From Julian's COTA journal
By now, some of you are receiving your hard copy of our Christmas Newsletter, which was written a few weeks ago. Below is an abridged version of the hard copy.
Hello everybody, and Happy Holidays!
www.cota.org) in the distribution, and as we were entering names and addresses, we were struck by how many of you we’ve never actually met. Add to that the hundreds of people who have been praying for Julian for the past four years, and the list would be staggering.
We are truly blessed and humbled. It’s Thanksgiving weekend here in the U.S., and we’re thankful for the support we’ve received from every one of you. 2008 has indeed been quite a year - especially for Julian.
A year ago at this time, he underwent surgery to place a catheter for peritoneal dialysis at Denver Children’s Hospital. Since then, we trained for P.D., the catheter failed, and he underwent surgery (#2) to remove it in January. We then discovered the steroid-free kidney transplant protocol at Lucile Packard Children’s Hospital at Stanford University, were accepted into that program, and in April, Stacy & Julian moved into the Ronald MacDonald House in Palo Alto. Julian underwent surgery (#3) to install a hemo-dialysis port, and was on hemo-dialysis for roughly six weeks. Cheryl Humble, a friend of ours from Stacy’s tenure at Ravencrest Chalet, graciously offered to be a live donor for Julian, and on May 20th, Cheryl and Julian underwent surgery (#4 for Julian) to transplant one of Cheryl’s live kidneys into Julian. What a miracle! Thank you forever, Cheryl. A few weeks after that, he underwent surgery (#5) to remove the hemo-dialysis port. Julian had a great summer, and we enjoyed our season at the coast. Then in September, Julian underwent surgery (#6) to have his 3 month biopsy. Then a week later, he had surgery again (#7) to have his tonsils removed, after it became clear that he may be having Obstructive Sleep Apnea, a condition not uncommon for transplant patients once they start to “catch up” on their physical growth (Julian gained over ten lbs. in the ten weeks following the transplant).
Seven surgeries in less than a year! And he’s still one of the sweetest little people we’ve ever met. Not that we’re biassed.
In late September, once Julian’s observation period was complete, he and Stacy moved back to Colorado. In November, they relocated to Gilbert, AZ, where Julian can receive the care he needs in Phoenix over the winter. David continues to live and work in Longmont, and flies to Arizona to visit when he can. Certainly not what we had planned, but we do what we must. Hopefully this will be a short-term arrangement.
Through it all, we recognize God’s hand of healing and guidance, albeit not always beforehand. There have been times when it’s been just plain scary. But at present, Julian is remarkably stable, and the Docs in Palo Alto consider his case “boring” - which means everything is going exactly according to plan. It seems that Cheryl’s kidney is perfect for Julian, and continues to exceed our hopes and dreams for this transplant. Of course we as parents are thrilled with Julian’s progress, and have every hope that it will continue for many, many years.
One of the reasons for this newsletter is to remind you that it’s always possible to make a financial donation to the Children’s Organ Transplant Association on Julian’s behalf. Donations are tax deductible for U.S. residents, and help to offset the ongoing costs associated with Julian’s transplant, which include monthly prescription co-pays, which can exceed $300.00 per month. Add to that regular labs and doctor’s visits here in Arizona, periodic visits to Palo Alto for biopsies and protocol clinic visits - it adds up fast, even when things are going well. Please click the “donate” tab at the top of the page. And “thanks” in advance from all of us.
Please stay up to date with us right here at Julian's COTA Journal. If you're reading this online and would like to be added to the hard-copy mailing list, or you have an address change, please drop us a line and let us know.
The Phillips Family - David, Stacy and Julian