Peyton is a beautiful baby girl, born on Thursday, September 4, 2008 at 2:14 pm to her loving parents, Kristin and Dru. Within moments of her birth, it was discovered that she had developed bleeding problems and difficulties with clotting. She was immediately stabilized with a platelet transfusion and transferred to a level 3 NICU. Within a day it was discovered that little Peyton was born with a rare and serious form of Infant acute lymphoblastic leukemia, sometimes called congenital ALL (or CALL). She is fighting against the odds, receiving intensive chemotherapy, and we pray each day for a medical miracle for this precious baby.
Many people have asked me, Peyton's aunt, how they can help. Well, here are several things that we all can do that will go a LONG way:
1. Pray! And please ask all your friends and family to do the same. If you can, add Peyton to your prayer roll at church. Peyton needs a medical miracle, and we definitely cannot underestimate the power of prayer.
2. Donate blood. Peyton is type A +. She has already received many transfusions and will continue to require these to stabilize her platelet count and prevent bleeding issues. Her hospital does have a direct donor program, so if you are interested in donating to her, you can contact the hospital. The web address is www.ccmckids.org. Even if you are not of the same blood type, please please please consider donating blood! One half a pint of blood can provide a baby like Peyton with 10+ transfusions, which is simply amazing!
3. If you have a moment, please send a letter to Peyton's parents to let them know that we are all here for them when they need to talk.
4. I will be adding a "chip in", onto this blog, which is a link where donations can be made through Paypal (whether 50 cents or 50 dollars, every little bit will help). This is going to be a long road filled with long-term hospital stays, chemo, home nursing, multiple medical procedures, and possible travel long-distance to specialty hospitals for specific procedures. Peyton's parents have insurance, but even the littlest of copays add up over time. Peyton's parents are wonderful people who would NEVER ask for help or a dime from anyone and that is EXACTLY why I want to set something up to help them. Another idea is to find out which chain restaurants are in the area and send a gift certificate. Kristin and Dru will both be staying in the hospital with Peyton (45 minutes from home), and Peyton is expected to be spending at least 6 months in the hospital, so they will not always have time to drive back to the house to grab a bite to eat.
5. Please, if you have time to read and research, any and all information is welcomed. Please send to me at kdlugozi@hotmail.com. Any information on experimental drugs, research projects or clinical studies that Peyton may qualify for may just lead to the medical miracle we are looking for.
Thank you so much. It means so much to Kristin, Dru and little Peyton to know that they have the prayers, love and support from so many family members and friends!
***Medical update...Peyton's was moved today from the NICU to the children's oncology floor, because she is considered medically stable enough to transfer there, so that is great! :) Her spleen is shrinking, which is a good thing, as it was pretty enlarged in the beginning. Her liver is still enlarged, as the liver gets filled up with all of these cancer cells....but it hasn't gotten any bigger over the past week, which is a good thing. Hopefully the liver will start to shrink soon. Peyton's platelets are an ongoing issue. After transfusions, the numbers go up (and her color looks good), but then eventually drop (and her color changes and she starts to bleed and bruise), so she will need ongoing transfusions. Her white blood count has been dropping, which is a very good thing. In fact, it is dropping much faster than the doctors even expected and faster than they usually see in these cases, which is amazing...maybe all of our prayers are working?!? I hope so. The doctors did a spinal tap last Sunday and found the cancer in her cerebrospinal fluid, but they expected it to be there and are pretty sure that they can get Peyton into the first level of remission. They will do a follow-up spinal tap in a few days. Peyton has a couple of small brain bleeds (because of the clotting issues), which they think she's had since birth, but they are small and the doctors think that the prednisone will cause them to shrink. The doctors are not at all worried about them.
The good news is that 80% of kids with infant ALL make it into remission (usually after about 4 weeks of treatment), but the issue is that cancer comes back in a lot of the cases. At that point, it is much harder to treat/resistive...and can come back anytime until her third birthday. Once she becomes 3 years old, Peyton will be officially considered cured, and we will be throwing a BIG party, complete with a pony named Peyton bought by her daddy. So Peyton will need all of our prayers for this crucial month to get into remission, and then double the prayers to stay in remission. Hopefully, by that point, one of these studies will come through for her....i.e. St Jude's or the National Institute of Health or Sloan-Kettering, or a similar research institute will accept her to try out a top of the line treatment to prevent a relapse. That is what I pray for more than anything.
Thank you so much for your continued thoughts and prayers.
Friday, September 12, 2008
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