For our angel friends whose lives were cut too short and their families.....

We have been at the Ronald McDonald House a long time and have met some great friends. Many kids barely hanging onto life were saved. Unfortunately, several of our friends went to heaven and we miss them very much. I want to dedicate this to Ayanna, Brittany, Gabriel and their families.

Your angels will be with you forever - watching you and waiting for you to join them. Your life is richer for having them in your life, even if it was just for a little while. Ayana, Gabriel and Brittany are free, angels of love, watching over you forever. I know that my words can not ease your pain. It is not fair. I will always continue to pray for Ayanna, Brittany and Gabriel.

Following is a poem a friend sent to me last year. I know that your angels are watching over you and one day you will be reunited.
 
Guess What Mommy & Daddy?

Guess what mommy & daddy,
Heaven is great.
Just like you said,
There's not much longer to wait.

Guess what mommy & daddy,
I have a guardian angel who comes at night.
I told him I wanted to go,
But the times not right.

YEAH!!!! Good news today. Results from Jaclyn's biopsy on Friday are clear and perfect, no bad PTLD. After perfect Pet Scans in November and December, an UNEXPECTED ABNORMALITY appeared on Jaclyn's Pet Scan last week. This was very scary since PTLD is very serious and Jaclyn's team of specialists are monitoring her very closely.

Jaclyn has been attending school full-time. This is very exciting since Jaclyn has not attended school full-time since she started dialysis in January of 2007, two years ago. She attended school part-time throughout dialysis and missed most of last semester after being hospitalized due to serious complications after being infected with EBV/Mono/PTLD. She has a photography class and we walked through the Stanford campus so she could take 60 photos for homework. The weather was beautiful and it was a nice walk.

We will be staying in the Palo Alto area for the near future as Jaclyn's doctors want to monitor her closely. Tonight was BINGO night at the Ronald McDonald House. Jaclyn won a Ronald McDonald House coffee mug for me tonight and it is inscribed with the following.....

This is the house

Where families meet

To continue their lives,

To eat and sleep,

To find their strengths

And dry their tears,

To look forward with hope

To better years.

This is the bouse

That becomes their home

This is the home

That love built.

I couldn't have said it better. The Ronald McDonald House has the best staff and volunteers and we have met so many new friends. We are forever grateful to have such a beautiful place to call home so close to the hospital with so many great people.

Thank you again to all of our heaven and earth angels.

Good health and much happiness to you and your loved ones.

Susan, mom of Jaclyn

Sometimes life just seems very unfair. We reviewed the final Pet Scan results today and unfortunately, the preliminary reports of the Pet Scan being perfect and awesome were wrong. Currently, they are inconclusive. Jaclyn has the doctors confused again and another team has been added to her team of numerous specialist to meet this evening and determine the next move.

Jaclyn is feeling very healthy. We will meet tomorrow with her Nephrology team. I doubt that they will have any answers, just a new plan. I will post the "NEW PLAN" asap.

Counting my blessings that Jaclyn is feeling good and still out of the hospital and attending school. Prayers and positive thoughts always appreciated.

Susan, mom of Jaclyn 

Jaclyn has been doing very well. The methylprednilosone infusions that Jaclyn received a couple of weeks ago did not reduce her creatinine to the levels that her doctors anticipated, but that doesn't mean that the kidney won't last her another 100 years......positive thoughts. :~)

Jaclyn had a Pet Scan on Monday and the preliminary results indicate that the bad PTLD is staying away. Final results should be available tomorrow so until then I am keeping my fingers, toes, legs, eyes, and everything else crossed and praying for a perfectly clear final Pet Scan.

Jaclyn is feeling very well and is attending classes at Stanford Monday through Friday. Although her creatinine did not decrease with the infusions, it will be a while before we know whether the mild rejection her kidney was experiencing has been reversed. Once again, fingers, toes and everything else crossed. We have an appointment with her Nephrology team on Thursday. Jaclyn and I are micromanaging her medications, walking a thin line, keeping the EBV, PTLD, CMV, BK, H1N1 and all the bad stuff from infiltrating her under-suppressed immune system while keeping her immune system suppressed enough to reverse her mild kidney rejection.......STRESSFUL. Other than that, LIFE IS GOOD.

Thank you again to all of our heaven and earth angels. We never would have made it without all of your prayers and positive thoughts.

Peace, much love, good health and happiness to you and your families,

Susan, mom of Jaclyn 

Thank goodness for a new year! There was a "Plan" at the end of last year to get Jaclyn's kidney to behave, but it was scratched due to Jaclyn's lab results being incredibly good the day the plan was to be implemented. This was a good thing, because the plan was to energize the kidney by infusing Jaclyn with Thymogloblulin for 4 days. This would have destroyed her immune system for weeks. This was a major concern since her immune system was previously wiped out, allowing EBV/Mono, PTLD and all kinds of very dangerous infections to infiltrate her body landing her back in the hospital in October and November for 27 days of excruiating pain.

The new plan, after her fourth kidney biopsy, in 6 months, is to treat the cellular rejection with Methylprednisolone infusions on Monday, Wednesday and Friday of this week, with Cytogam/IVIG infusions on Tuesday and Thursday. The Methylprednisolone infusions are expected to reverse the cellular rejection and eliminate the infiltration of T cells attacking the kidney. The Cytogam/IVIG infusions help prevent CMV and EBV. Cytogam/IVIG is derived from adult human plasma selected for the high titers of antibody for CMV (Cytomegalovirus) and EBV (Ebstein Barr Virus). Although 95% of the population are EBV and CMV +, indicating that they have had the viruses at some point in their lives, these viruses are extremely dangerous to immune suppressed individuals and should be taken VERY SERIOUSLY. Treatments to prevent and/or fight these viruses before and/or as soon as they present themselves should be AGGRESSIVE.

I wish I knew 6 months ago what I know now, but I can only move forward toward getting Jaclyn 100% healthy and that continues to be the goal!

Thank you again to all of our heaven and earth angels watching over us.

Peace, love, good health and much happiness to you and your families.

Susan, mom of Jaclyn 

May the wonder of this magical season captivate your heart and may you be healthy and happy throughout the coming year. Always remember, your greatest gifts cannot be wrapped or placed under a tree.

Jaclyn has had a very rough year and we are still in California, going on 6 months. Jaclyn and I miss my other daughters, Val and Deziree, terribly. Thank you to their wonderful stepdad Jim and Grandparents, Great-grandma and Aunt Linda who continue to watch over them and insure they have a joyful holiday.

We have had several plans to get Jaclyn stable enough to return to Colorado, but all have been unsuccessful. I expect a new plan next week and praying that the NEW PLAN is the PERFECT PLAN to get and keep this kid healthy! I will post "THE PLAN" as soon as it is available.

Thank you to all of our heaven and earth angels that have supported us through Jaclyn's journey. You are truly amazing and we are forever grateful.

Happy and healthy holidays!

Susan, mom of Jaclyn 

(posted @ 10:16 in California. It is still Christmas here)

Jaclyn's well deserved 10 day trip to Colorado was cut to just 5 days when she had to fly back to California on Dec 2nd :~(  Jaclyn has tried to go home to Colorado twice and her new kidney is having issues leaving California. I expect all issues will be resolved soon.

We had the opportunity to reunite with some transplant buddies over the past week. These kids are courageous and amazing. All of the families are so supportive. Nobody ever expects to be watching their child play football one day and be hooked to an artificial heart the next day, running and playing and then hooked to a dialysis machine waiting for a kidney, or emergency airlifted to another state when their child's liver suddenly fails. No one expects it and no one really understands how you feel except those who have been there.

The kids and families that I have met over the past several months have provided me with so much strength and inspiration.... Parents that have left their jobs to make sure their child continues to breathe and to be their to hold their hand should they stop breathing.... Kids that continually reassure their parents not to worry, that everything will be okay.  All of these families are very special and I am blessed to know them.

Thank you again for all of your prayers and support. We never would have made it without all of you. May we learn from Jaclyn's struggles to hug our children a little tighter, evaluate our priorities and love a little more.

Peace, love, good health and much happiness.

Susan, mom of Jaclyn

Jaclyn is finally back in Colorado for a 10 day break!!! She put up quite the battle to get out of the PICU, although she doesn't remember any of it, discharged from her 3-West room, and then released from the area to go back to Colorado. She is a fighter!

She used to love California, the beaches, Disneyland, her aunt and cousins,  but now she officially HATES California, too many hospital days. :~(

She is having her blood lab work done in Littleton and faxed to LPCH/Stanford at least twice a week. She is trying to get caught up with all of her homework. Thanks to some of her professors that let her slide on some of the assignments. :~)

She will be back in Cali on 12/8 for several days and then back again 12/29. After that, it is anyone's guess. 

I was at the hospital billing office yesterday trying to get all of Jaclyn's bills paid, but they said it would take several days to sort it all out. She has exceeded the $1 million mark. :~( 

I am frantically trying to select a new medical insurance plan for 2010 and everything is so confusing. Our current insurance is being dropped as an option through JIm's employer. Jaclyn definitely needs continuous coverage without having to pre-authorize everything again. Please let me know if you have any insurance knowledge and can provide advice.  Options include Samba (offering Cigna PPO) or Blue Cross Blue Shield among a host of others. My email is susanmballard@msn.com and I can provide you with a link to the insurance options that are available. I have notified the hospital insurance specialist and am still waiting. I need to choose one within the next week. UGH! Please help!

May you and your families be blessed with GOOD HEALTH and much happiness.

Susan, mom of Jaclyn 

Today was beautiful in San Francisco and Jaclyn is doing very well...staying out of the hospital and plannning to keep it that way for a very long time.

Jac and her sisters, Deziree and Val, enjoyed a picnic at the edge of the Golden Gate Bridge......Good times.

Jaclyn was finally discharged from the hospital, Thursday, November 12th, after 27 days. Thank you! Jaclyn received more than 100 cards. She has the best buddies in the world. We need to hang out in the Stanford area for the next couple of weeks. She misses her Colorado friends so much, but got to have lunch with some of one of her Santa Cruz friends, Tatiana, today.

If you want to send Jaclyn a smiley, her address for the next couple of weeks is:

Jaclyn Perea
c/o Ronald McDonald House Room  c201

520 Sand Hill Road
Palo Alto, Ca
94304

She is excited that her sisters, Val and Dez, will be flying in for Thanksgiving break next week. Jac and I miss them so much!!!!

Peace, much love and good health to you and your families.

Susan, mom of Jaclyn