Anyone interested in being a kidney donor for Deziree, she is blood type A and can receive a kidney from an O or A. If you want more information, please contact Transplant Coordinator, Jamie Berry, at University of Colorado hospital at 720-848-2264 and she will put you in touch with the people that can answer your questions.

Have a heart, donate a kidney, Save a life.

We are also in need of a Team Lead or Co-Team Leads. Lauren Byrne did an awesome job, but Jaclyn was a $5 million project that was a great success. Its time to give Lauren a break and get a new Team Lead for Deziree or co-team leads. Bob Becker has agreed to take over the accounting and Karen Hillers will continue with the web updates. We are also in need of a PR person. Thank you in advance for all of your prayers and those willing to step up and help out. Contributions are always welcome as Jac's estimated expenses skyrocketed from $450,000 to $5 million.

Thanks in advance to everyone. Praying everyday that Deziree's kidney transplant goes perfectly.

Peace, love, happiness and good health to you and your loved ones,

Susan, mother of Deziree and Jaclyn

 Sorry for the delayed update, but Jaclyn has been doing amazingly well for the past 6 months. Her creatine remains about 1.1 -1.2, which is a huge improvement over the baseline calculated by LPCH prior to returning to Colorado and becoming a patient of the awesome team at UCH.

Her last Pet Scan was completed in Colorado and sent to LPCH, Dr. Garfin and Dr. Twist, two of our all time favorite docs and the results were good!

Great news.......It took a very long time, but Jac's new kidney loves Jaclyn and vis versa and no PTLD!

LIFE IS GOOD!!!

Peace, love, health and happiness,

Susan, mother of Jaclyn (transplant 7/4/09) and Deziree (listed for kidney).

Jaclyn's lab results are amazing!

She is feeling great!

Thank you for all your prayers. The power of prayer is awesome!

Love, light, good health, much happiness and lots of hugs to all of you and your families,

Susan, mom of Jaclyn

When things are good, they are really good, but unfortunately things can still go from good to very bad in one short week.

Last year, at this time, Jaclyn had the EBV virus, the titers were low at 12,000-14,000, but that didn't keep her from getting a very serious case of PTLD, Mono/Cancer. It put her in the hospital for 27 days and caused her kidney to go into vascular rejection, which had a domino effect of causing more problems.

Summer was good. She was hospitalized for 5 days in May for an infection that caused her creatinine to sky-rocket. Then she stayed out of the hospital for the rest of the summer until mid-August when low levels of CMV and EBV were detected, <10,000. She spent the weekend getting Cytogam infusions and was out within 3 days. She started a theraputic dose of Valcyte and continues to take the theraputic dose. I thought she was finally in the clear after 4 tests over several weeks showed that both the EBV and CMV were undetectable.

On Sunday, 9/19, all of her labs looked great!!!! However, it takes several days for the EBV and CMV results to return. I was in shock on Wednesday when I heard that her EBV titers were >120,000!!! 10 times the amount they were last year when she became seriously ill. The CMV had returned also, but only 3800.

She was retested on Thursday morning, because people don't usually go from 0 to 120,000 EBV PCR titers in 1 week and it was thought to be a lab error. Results were back today, 9/24 and the EBV titers are down to 47,000, still 4 times the amount that caused serious problems last year. At least the numbers are trending down. The CMV is 0. She is currently being retested at a different lab that will send her blood to the Mayo clinic.

Please pray that the EBV titers continue to decrease and go away and that the EBV, CMV and PTLD STAY AWAY!

Prayers for good health for you and your families.

Susan, mom of Jaclyn

There were some technical problems with Jaclyn's website and after being down for a couple of weeks, it is back up and running. However, all updates and comments made in the past month (8/16-9/15/10) could not be recovered. :~(

Recap: Jaclyn beat the ugly EBV and CMV viruses!!! The numbers were undetectable just in time for us to spend Labor Day weekend visiting with family in Laguna Beach. Jaclyn had not seen her granddad in 3 1/2 years. We visited when we found out about her kidney disease in early 2007, but once she went on dialysis, we were unable to travel anywhere. There are a lot of dialysis centers around the world for adults, but none for kids. In fact, Jaclyn's dialysis center at Children's Hospital in Aurora, CO is the only dialysis center for kids in an 8 state region.

She was very excited to see her granddad and of course some of her other favorite family members.

Jac and granddad in Laguna Beach, CA - Labor Day Weekend

Jac is currently doing very well getting up at 5:30-6am each morning and to school by 7am.  LIFE IS GOOD!

Thank you again to all of our heaven and earth angels. We never could have made it without you.

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

Susan, mom of Jaclyn

YEAH! Jaclyn is out of the hospital. She was starting to get very agitated. The plan changed slightly and she was given 3 infusions of Cytogam (5 grams each, Fri, Sat, Sun) and Valcyte 450mg two times per day to be continued until her EBV and CMV PCRs are back to 0.EBV and CMV are very scary viruses for transplant patients. The EBV caused the PTLD/cancer, which landed her back in the hospital for 27 days in 10-11/2009.  The Rituximab that was given to Jaclyn in Oct-Nov 2009 wiped out all of her “B” cells in her immune system. Her “B” cells are returning. EBV lives in “B” cells. Jaclyn is much stronger and on much lower doses of immunosuppressants so with the help of the Cytogam and Valcyte to fight off the EBV and CMV, I am optimistic that she will beat these viruses. Things could become very complicated if the PTLD comes back. Please pray that these viruses go away quickly and the ugly PTLD stays away.

She is feeling great. When the discharge papers came in, she could not run out the door quick enough. It is the last week of summer before school starts and she wants to hang out with friends. She will have to go back for blood labs tomorrow and a clinic visit with the UCH Transplant team. It will be several days before we know if the Cytogam and Valcyte wiped out the CMV and EBV viruses. Everyone will be micro-managing her again.  She has fought so hard and neither of us EVER WANT TO GO BACK TO THE NIGHTMARE OF OCT 2009- APRIL 2010....Been there, done that, not going there again.

Peace, love, much happiness and GOOD HEALTH to all of you and your families,

Susan, mom of Jaclyn

Ugh! I just spent an hour typing this blog and lost my internet connection and lost my entire blog.....so here is the condensed version.

Tuesday labs were great, awesome, perfect. Jaclyn has been out of the hospital for 3 months and feeling great. Life is good. Then at 1am this morning, an email popped up with final lab results on Jaclyn's CMV and EBV tests......NOT GOOD!

CMV PCR titers 12800 and EBV (the bad EBV that led to the ugly PTLD last year) PCR titers 3800. I was up all night and on the phone first thing this morning with UCH and LPCH/Stanford. The hospitals finally agreed on a treatment plan of several Cytogam infusions (4 grams -baby dose; she has had 5-6.1 grams) and Gancyclovir infusions (probably 200mg) and 900 mg of Valcyte has been added back to her daily meds.

I told Jaclyn that she would have to go back to the hospital and she disappeared....She was GONE! She said that she was needed at work and didn't have time for the hospital. We finally got checked in at 8pm tonight. Hopefully, after a couple of days, they can do the remaining infusions on an out-patient basis.

Please pray that these bugs resolve quickly and there are no more complications. Jaclyn is feeling great, just upset that its Friday night and she would rather be anywhere other than the hospital.

Thank you to all of heaven and earth angels for all of your prayers and support. Hug your kids a little longer and tighter tonight and every night.

Good health to you and your families,

Susan, mom of Jaclyn 

We enjoyed a fun bar-b-q at my sister's house on Sunday, July 25th. Jaclyn has been out of the hospital for more than 2 months and it was time to get the team together to express my extreme gratitude. Jac and I are forever grateful for the individuals that stepped up and made "Team Jaclyn" a reality. I never imagined all of the complications that could and did occur and throughout the past couple of years, TEAM JACLYN, has helped support our family financially and emotionally.

Lauren, the driving force behind Team Jaclyn, along with Mary, Linda, Ginger, Ashley, Val, Dez, Bob, Jim and all of the other kind souls with big hearts that make up Team Jaclyn, provided so much inspiration and emotional support for my family during a very difficult time. Should you ever come upon a bump in the road, remember Jac and I got your back. We will always be there for you.

The past year was an absolute nightmare with Jaclyn's medical bills exceeding $3million, our insurance company canceling us at year end and starting over with a new insurance company. Even with backup insurance coverage, the bills to get Jaclyn healthy were very overwhelming. We definitely could not have make it without TEAM JACLYN. We are forever grateful and will pay it forward.

TEAM JACLYN Appreciation Bar-B-Q Photos:

       Waterballoon Toss, always a favorite :~)

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