Thanks for all of your prayers and positive vibes....THEY WORKED! Jaclyn had a Pet Scan at Stanford Hospital on Tuesday. On Wednesday, we met with her DREAM TEAM, Dr T and Dr. G. I credit them for saving Jaclyn after she became terribly ill with PTLD in October 2009. The Pet Scan shows that she remains PTLD FREE!!! I will post a photo of Jaclyn with her Dream Team this weekend.

We did have a bit of a scare when Jaclyn's creatinine, tested at the Stanford labs, bumped to 1.7, after being very stable at 1.2-1.3 for the past 5+ weeks. Although Jaclyn is convinced that the Stanford lab just does not like her, it was probably due to dehydration caused by the flight and being NPO prior to the Pet Scan.

NO CANCER. KIDNEY FUNCTION IS GOOD. LIFE IS GREAT. 1 year kidneyanniversary on July 4th.....Independence from dialysis and a BIG CELEBRATION after a very tough year. Good health and good times ahead!

Peace, good health, much happiness and lots of hugs to all of you and your families who have continued to support Jaclyn and our family through the past several years. We never would have made it without you. We are eternally grateful for each one of you.

Susan, mom of Jaclyn

Jaclyn will be returning to Lucile Packard Children's Hospital for a check up with her Oncology Team on June 29-30th. In October of 2009, Jaclyn was diagnosed with PTLD,  Posttransplant lymphoproliferative disorder. PTLD is a combination of Mono and cancer. It is caused when the EBV, Ebstein Barr Virus, infects the B cells due to a weak immune system.  The more intense the immunosuppression used, the higher the incidence of PTLD and the earlier it occurs. Jaclyn's PTLD was very severe. She spent 27 days in the hospital, 10 were in the intensive care unit. The Oncology PTLD Specialists, Dr. T and Dr. G, took over and were able to eliminate all of her B cells with Rituximab, thereby eliminating the PTLD. 

Jaclyn had zero B cells from November 2009 until last week. They have started coming back, which everyone expected. She will be tested at LPCH/Stanford to confirm that all of her B cells are coming back healthy, NO PTLD. She has had several PET scans,  Positron emission tomography,  and no PTLD has been detected since all of her B cells were eliminated in November 2009. 

According to Wikipedia a PET scan is a nuclear medicine imaging technique which produces a three-dimensional image or picture of functional processes in the body. The system detects pairs of gamma rays emitted indirectly by a positron-emitting radionuclide (tracer), which is introduced into the body on a biologically active molecule. Images of tracer concentration in 3-dimensional or 4-dimensional space (the 4th dimension being time) within the body are then reconstructed by computer analysis. In modern scanners, this reconstruction is often accomplished with the aid of a CT X-ray scan performed on the patient during the same session, in the same machine. IMO, Scary Stuff.

It has been 3 months since Jaclyn's last PET scan and we are confident that her scan will show that the PTLD has not returned and her new B cells are healthy.  I do have some anxiety about returning to the Bay Area as our experience there over the past year was an absolute NIGHTMARE. Please pray that our trip is smooth and uneventful and the PET scan shows no abnormalities and we can be back in Colorado within a couple of days.

Thank you to all of our heaven and earth angels as we never would have made it without you.

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

Susan, mom of Jaclyn 

Our friend, Ky, received her kidney transplant, June 2009, one month before Jaclyn. Ky's kidneys failed due to FSGS http://www.nephcure.org/fsgs-facts.htm

Only one of Ky's native kidneys was removed before her new kidney was transplanted a year ago. It was a very rough year for Ky. Last Wednesday, June 2, her remaining native kidney and her transplanted kidney were both removed. The disease that attacked her original kidneys had reoccurred and began attacking the new kidney immediately after her transplant last year.

Ky is extremely intelligent. I think she knows more than some of the doctors and most of the nurses. She will talk your ears off about the plasmapheresis, her gastric feeding tube and treatments that she endured over the past year to try to save her kidney. She is so brave, but she confided in me that the past year has been harder on her than the dialysis she received for years prior to her transplant.

I imagine that Ky will be running that hospital in the next 20 years. It would be sooner, but she is currently only 6 years old. Ky has lots of spunk and I am sure she would welcome your prayers and positive energy to find a cure for FSGS and find a new and perfect kidney for her when she is ready.  She would also welcome an interview with Oprah or Dr. Oz as she has an amazing story to tell....that will have a happily ever after ending. :~)

Thanks in advance for your prayers for our good friend.

Much happiness and good health to you and your families.

Susan, mom of Jaclyn

WOW!!!  11 months and the last several weeks have been smooth sailing and I plan on keeping Jaclyn healthy for a very, very long time!

FINALLY! Good lab numbers and a healthy kid for 3 weeks!!!  I am elated. Jaclyn is so tuff. God must have finally heard me screaming, “ I am at my breaking point “ and decided to cut me some slack. THANK YOU!!!! 

We are done living at the hospital. Dr. C, at UCH, asked several weeks ago if the hospital food at UCH was better than Stanford….UGH!  I would rather eat airline food than hospital food any day. Hospital sleeping accommodations varied between a vinyl couch or vinyl recliner. I have learned to sleep on anything, anywhere, but can only sleep when my baby girl is not in pain. Jaclyn and I have definitely spent too many days and nights in the hospital and the doctors couldn’t agree more. They grew tired of seeing my blood shot eyes every morning. I did nothing but insure that Jaclyn received her medications and she was comfortable and I have never been more exhausted in my entire life. No more pain, no more hospital stays, just healthy living from here on out.  

Thank you again for all the love,  support , and donations for Jaclyn. We are blessed to have such wonderful people in our lives!

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

Susan, mom of Jaclyn

Jaclyn has been back in Colorado for 3 weeks and she plans to STAY.....No more emergency flights back to CA. Life has been good although she had a small bump in the road. I don't think many people can come to Denver, the sinus infection capital of the world, and not get sinusitis. The good news is that her hospital stay was short and painless. That's right! No excruciating pain and NO Code Blue! She received some IV hydration and IV antibiotics and some great care from the awesome medical teams at University of Colorado Hospital during her 4 day stay.

Since she was released, she looks and feels great. She took her driver license test and scored 100%! She also found out today that she got accepted into the Forensic Science program through her high school. She is very excited! In August, she will attend a couple of classes in the morning at Columbine High School and then drive to Warren Tech School for the Forensic Science program from 11:45 - 3:30 Mon through Thursday.

Jaclyn is reconnecting with all of her friends and enjoying her new freedom that comes with her jeep and license. Life is good.

Peace, love, great health and much happiness to all of you and your families,

Susan, mom of Jaclyn 

Happy Birthday to my wonderful, amazing and beautiful daughter!

It seems like only yesterday that I held you in my arms for the first time. Today, you are 16 and you have made me smile and warmed my heart more times than I could ever count.

The past several years have been rough, but you perservered with amazing strength and courage. You are an inspiration to so many. You are my hero!

I know that you have a beautiful and healthy future ahead.  Reach for the stars, dream HUGE, make lots of wishes and never give up.

Happy 16th birthday, Jaclyn!

Love you forever,

mom

I feel like this is a new beginning for Jaclyn. It's interesting that this is Easter and a time of resurrection. I see it as a time of rebirth, it's a new start for Jaclyn. Last week was tough. Jaclyn was admitted to the hospital on March 28th and we are still here on Easter. She has a bad sinus infection and Paratitis in her left cheek. Once again, due to a wiped out immune system, it seems that every bug is attacking Jaclyn.

Jaclyn was in much pain March 29-30th and was getting the pain med, Dilaudid through an IV drip. On March 30th at approx 4:30am the Dilaudid pain med was changed out for a new bottle. Within 20 minutes, Jaclyn stopped breathing....CODE BLUE and the Crash team surrounded Jaclyn giving her oxygen. Finally, Jaclyn started breathing on her own. Watching Jaclyn "Code Blue" was an absolute nightmare. The bottle of Dilaudid pain med was pulled and sent to the lab for analysis. Since Jaclyn had been receiving that pain med all night without any problems until the bottle was replaced, the most likely explanation is that the med was mixed incorrectly.

This is worse than any nightmare I could have ever imagined. Too little pain meds and my poor daughter is in agonizing pain....too much and she stops breathing.  Time to check out of this nightmare. 

Good news.... Pet Scan on Monday was PTLD FREE! I have so much respect for Jaclyn's amazing ONC Team. Dr. T and Dr. G are the best! Creatinine is coming down now that Jaclyn's mouth infection is resolving. I know that Jaclyn will be back home this month for her birthday, April 30th.

We plan to pack up and check out of this joint soon as Jaclyn has had all that she can possibly handle. In the very near future, we are checking out and headed................

Can you believe it?

Are you ready?

I am going to say it.....

I really am...............................................................

                                                      HOME                  

definitely prior to April 30th.

It's our time to be healthy and happy in Colorado again.

Thank you to all of our heaven and earth angels. May you and your families have a very blessed Easter.

Peace, love, good health and much happiness to all of you.

Susan, mom of Jaclyn