I know it’s been awhile since I have last posted. We’ve been busy with lots of doctor appointments and all four little ones came down with a nasty virus upon our return from Sacramento. After a few visits to urgent care and a couple of IV’s I think we are now on the up and up.
On November 8th our entire family journeyed to Sacramento to attend a XP Family Support Group Medical Conference and Firefly Kids Camp. We were finally able to meet Michele Milota, Executive Director of the XP Family Support Group (XPFSG). I already felt that I really knew her after speaking to her and emailing her countless times over the 6 weeks prior to our in person meeting. Michele has truly been a lifeline for Albert and I. We also had the opportunity to meet many children, young adults, and adults afflicted with XP and their families as well. Prior to our trip my husband found a blog online about an adorable little girl named Anna, who has been diagnosed with XP-D. You can follow her blog at http://www.annaliberty.wordpress.com. Oliver had the chance to meet Anna and play with her and the other kids for the weekend conference.
Our oldest Savannah, volunteered to help out with the kids camp. That was such a blessing because Oliver has been exceptionally clingy these last two months. My husband and I would have had to switch off attending the seminars so that we could care for Oliver if it hadn’t been for Savannah. I am grateful that we were able to attend the seminars together. Some of the subjects were a bit heavy and I am glad that I was not alone. We had the opportunity to meet Debby Tamura (Dr. Kraemer’s nurse) from NIH. I felt like I already knew her so well after speaking to her on the phone for a couple of hours over the past several weeks. We also got to hear different seminars from James Cleaver,Ph.D and Eric Huang, MD,Ph.D both of the University of California, San Francisco as well as Dr. W. Clark Lambert. They talked about the causes of DNA damage, the neuropathology of DNA damage, how to manage xeroderma pigmentosum and the research that has been done and continues to be done for XP. Of course our favorite talk was given by Dr. Bari Cunningham, one of Oliver’s dermatologists. Our least favorite but necessary seminar was given by Debby Tamura. Her seminar was titled, “The Ultimate Gift-Organ Donation for Research”. I have always been an organ donor since I turned 16 and had that pink dot placed on my driver license indicating so. It has always been my belief that I would only donate the necessary organs for live donors. That way in the event I pass through this life I maybe able to help someone else live a more full life. It had never occurred to my husband and I,that we would someday be sitting down in a room discussing the possibility of donating our own child’s organs, eyes, etc to aid in the research and future cure of xeroderma pigmentosum. I don’t think that anything can ever prepare a parent for the possibility that they may outlive their own child. We have decided to send off Oliver’s registration to the Brain and Tissue Bank for Developmental Disorders at the University of Maryland, Baltimore so that he can be a tissue donor IF he returns to his Heavenly Father sooner than expected. We still are waiting for his biopsy results. The results will tell us whether Oliver has a significant risk for having neurological abnormalities. It is our hope and prayers that Oliver will outlive us both and he will be able to live a long and fulfilled life here on earth. When Oliver is an adult he can choose to rescind the donation, but as his parents we want to be prepared in case that awful day arrives before we are ready. I encourage all of you reading this blog post to take a few moments to sit down with your loved ones and discuss whether or not you want to be an organ donor. If you do choose to give the gift of life, please don’t wait. Please take the necessary steps to make your wishes known to your loved ones as well as have the proper documentation done ahead of time. You just may make a difference in not one but several people’s lives.
Attending the conference was a bit emotionally draining but my husband and I both agree it was well worth all the effort it took to get 5 kids up there. We had the opportunity to meet all the men and women who called us in the first week of Oliver’s diagnosis and gave us a lot more promising information than what we had received from using Google search. They gave us hope that if we take the necessary precautions now, Oliver has a good chance at living a good life. We hope it’s long and fulfilled, however, there are never any guarantees. For today we live on hope. We are grateful for the friendships were we able to forge and for our new XP family that has so lovingly welcomed our entire family.
Tomorrow is Oliver’s big day. We head to Children’s Hospital Los Angeles early in the morning to meet with an ocular oncologist in regards to the lesion on Oliver’s right eye. We are hoping that it is just pre-cancerous and can be easily removed. I will post an update as soon as I can. Thank you for following our sweet Ollie’s blog.