As many of you know, the last few weeks have been truly awful, worse than we could have imagined. But there have been some good things to come out of this horrible ordeal, so far. One of those is that we have been reminded how many people care about us and how many people are willing to be kind and caring and help. We truly appreciate and need help right now. So thank you all. The cards, flowers, goodies, balloons, packages, and calls have all been great. Kinsey has really loved getting so much mail (and soon she will have her own website). She has even designed her own thank you cards made from drawings she did in the hospital.
Many of you have said you hate to call and "bother" us, that you know we are very busy and overwhelmed right now (and that's true). But you have said you'd like to know what's going on with Kinsey. Initially, we had a sort of phone tree set up but as we've realized how truly long-term this battle/race is going to be and how often things may change, we thought setting up a group email might be helpful. We still want to talk to you, but repeating the same things over and over (without crying sometimes) or forgetting whom we've told what is a challenge, especially since we are not operating on a full charge (we forget little things like to feed Jillian, turn off the porch light in the morning, or how to get out of the neighborhood; fortunately for Jillian, she can open the fridge). So we hope this is helpful. If not, please let us know and we'll be glad to take your name off the list. We know we may sometimes provide more information than you want to know (we never wanted to know nearly this much about any of this) such as the lengthy list of pros and cons for a broviac vs. a port (Kinsey chose the broviac, fewer needle sticks, but harder on Mom to maintain daily). So we won't be offended if you'd prefer less frequent, less detailed updates. If you know of anyone else who'd like to be added (we're still gathering email addresses), let us know that too.
So for update #1, here goes: After having been diagnosed with Aplastic Anemia 2 1/2 weeks ago and having endured two hospital stays, one ambulance ride, one surgery, numerous needle sticks, thousands of vitals checks, several incompetent staff (along with some very good ones) and 7 room changes in 9 days, Kinsey came home last night!!!! We all waited all day at the hospital with our fingers and toes crossed and finally the doctor said, "Go." Audrey and I had to take a two-year medical course in 30 minutes yesterday, with an additional refresher, 20 minutes by phone this morning, but hey, piece of cake after watching Kinsey shiver uncontrollably in ICU and hearing her alarms ring every 10 minutes last week. She is truly thrilled to be home and today our biggest problem (aside from feeling like we had to perform surgery with broviac bandage change and flushing) was keeping her and Jillian from fighting. We were more successful with the "surgery." She seems to feel great overall and has a much improved attitude since leaving that "hateful" hospital where there are still several nurses and doctors working whom she told, "You should be fired." She says I taught her that word during a discussion about "consequences."
If all goes well (no infections, unexpected bad reactions to meds, or other curve balls) Kinsey should be able to have most of her treatment here at home. She is taking lots of medications (she learned to swallow pills yesterday and is a pro today, but she still fights about one liquid "chemotherapy" drug which she calls, "Bla Bla.") We sing, dance, pretend to faint, and anything else she asks and still have to end up holding her down, pinching her nose, and forcing it in (but we do prepare the "best milk shake in the world" complete with crushed fresh Oreos for a chaser; I haven't figured out what to do with all the middle cream, any ideas?). The meds have some pretty awful definite and potential short- and long-term side effects, but we force them out of our minds by simply considering the alternative. She will need to go to the clinic twice a week for labs and possible transfusions.
Otherwise, she is on severe isolation and cannot really go anywhere where other people will be or where a lot of children have been (no restaurants, malls, theaters, grocery stores, etc.). She can't even go to the park next door when it's empty because of 1) germs left behind and 2) the risk of falling and causing a brain bleed, due to low platelets. She has no immune system right now at all, and even we wore masks around her until yesterday. Clorox is our new best friend and hand washing is our new middle name. We haven't even let her go upstairs to play with toys until we have a chance to wipe them all down, as directed. She cannot be around flowers, plants, eat fresh fruit or play with stuffed animals (except the few she values enough to endure our attempt at sterilization). We did have one great adventure on our way home, though, dinner out at Sonic while we waited for her prescriptions to be filled. As it is one of her and Jillian's favorite places, they didn't seem to mind and we just parked far from others and hung out our Get Well Balloons to officially mark the celebration site.
The treatment, we are being told, should last about a year. If it fails, she will still need a bone marrow transplant. Her odds of survival are about 70%, but as they keep telling us, "For her it will be 100%, it works or it doesn't." We know it will work, but we know we've got a long tough road ahead. We are starting a Caring for Kinsey Fund and her website: CaringforKinsey.com should be up and running soon as well. The purpose of these is to help raise awareness (of this disease and the importance of donating blood, platelets, and registering as a bone marrow donor) and funds to cover the costs of her care as well as to prepare for the possibility of a transplant. More info to come about those.
Kinsey wrote two emails tonight to other little girls with this disease. One, age 5 and here in Albuquerque, was diagnosed two months ago. The other in Illinois was diagnosed 5 years ago and is doing okay after a marrow transplant 3 years ago. I will make sure Kinsey participates in these updates and try to send them frequently enough that they will be briefer.
Thank you again to all of you for your thoughts and prayers! Keep them coming. We need all the help we can get. While these weeks have been heart wrenching, the help of friends and family has gotten us through. Aunt Ann (Audrey's sister), who arrived on day 2 of hospital stay 1 and stayed through the surgery was a great help and is coming back on Thursday. Aunt Dee Dee (my sister Diane) came a few days last week and helped tremendously while we attempted to juggle caring for both kids and keeping up with daily changes. Special thanks to my sister Teresa and niece Jacki for their above-and-beyond-the-call-of-duty willingness to come to our aid as well! Our wonderful friends Jill and Jim Rich, Hilary Elliot, and Richard and Jane Nadolny have really come through with some extraordinary help and support, too. And my boss, Bettye Pressley, and co-workers have also been wonderfully supportive and continue to give me the time and flexibility I need to try to hold things (and myself) together. I cannot imagine what life would be like had they been "average" about this. There are so many others I should mention but I already sound like a bad academy award acceptance speech so I'll stop and thank you all, again. Jillian asked Kinsey the other day why we'd gotten so many cards and packages, and Kinsey said, "Because they all care!" Thank you for caring. Thank you for being there. These are times we did not think we could bear, and we are getting through them. As a card from my sister Teresa said, "Know you are stronger than you think, and you are not alone." Thank you for helping us to know that.
Karen, Audrey, Kinsey, and Jillian
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