As usual, it's after 3 a.m. and I sit typing. It seems to be the only time I can find time to read and respond to emails and get any uninterrupted time. Tonight, Audrey and I were both going to stay with Kinsey and Jillian was going to stay with my sister Diane, her Aunt Dee Dee (as she calls her). She was very excited and even dragged Kinsey's little Barbie suitcase out this morning for the occasion, saying "I'm staying with Aunt Dee Dee at Ronald McDonald's House (RMH) tonight." We packed everything including a small TV with a VCR. We all spent the day together on pass, ice cream first, playtime at RMH, then pizza before returning to the hospital. I got Jillian all set up at RMH with Diane and headed back to the hospital. I checked in at about 11 and all was well. At 12:30, Diane called saying Jillian had changed her mind. She had wanted Sprite, which Diane didn't have and didn't intend to give her anyway at 12:30 and that started her discontent. She got on the phone, "Mommy, I want you. I want you. I want you." Audrey was already "in bed" at the hospital. Kinsey was asleep. So I headed across the street to rescue her and my sister. It was cold and raining as we came back here to Kathy's House. She is sleeping soundly as I hope Kinsey, too, is doing as I try to catch up on the last of the incoming emails.
Quick Update on the numbers: After the last email, the next day was zero neutrophils but a large number of monocytes, about 140, which the doc said was "just as good." The next day 31. The next 16. Today: Zero again with very few monocytes. The doctor said yesterday, "Kinsey looks good and is clinically doing good but her white cells 'suck.'" Tonight she was chanting a new tune her grandpa taught her: "Take those pills. Get neutrophils. We love you much. Let's keep in touch."
We took her out on Lake Michigan yesterday on a one hour boat ride. She slept on my sister's lap for much of it but seemed to enjoy the uninterrupted peaceful nap with the nice breeze, gentle rocking and sound of waves quietly flapping. We had created the fortress around her in an attempt to ensure this kid with a cough couldn't come within 40 feet and no one else could come within 10. She enjoyed seeing the draw bridges and the park we'd been to from out on the water. Jillian liked it too. We all did. It was quite nice and truthfully such simple things hold so much more pleasure for me than they used to. I told Diane and Audrey yesterday morning, "We could go watch paint peel and it would beat the day I've had." Kinsey fought and fought about her medicine, especially the mouth swab which she only has to do once a day now. She fought me. She fought the nurse about having her blood pressure taken. For only the third time, the second since we've been here, she hit a nurse. It just happened to be the same one, one we like very much. She likes her too. The nurse even brought her a gift: a water pistol to get the doctor with, which she did. Nurse Maureen sent the doctor in and Kinsey pulled the big water gun out from under the covers and let him have it, giggling all the way. He told her, "You've declared war now. I will get sterile water and be forewarned that in your sleep you will be taking a shower!" She was in a great mood, looking forward to her pass, feeling good. Then came the pills.
She fought so hard, kicking me at one point, that she knocked the swab out of my hand and managed to pull the bottom of her bandage loose. I had to redo her entire bandage. And at one point during that process, I said, "Kinsey, I love you and I would never leave you so that you wouldn't be taken care of. But Nurse Maureen will take good care of you, and if you scream again, I will quietly get up and leave and send her in to finish the bandage change, because Mommy's nerves are shot and I am afraid to do this feeling this way and with you screaming and squirming." She said, "If you leave, I'll scream louder." I said, "You may, but I will walk far enough away not to hear it." She stopped. Perhaps it was her realization that I really was at the edge. In any case, the pass outing was a welcome change to the morning's activities. Today, she missed an hour of her pass, fighting about meds for half an hour and sitting in time out in the van with us for half an hour while Jillian continued to play inside RMH. The psychologist said kids in this situation will latch onto one thing they want to battle for control over and with her, it's meds right now. Six pills a day and one swab. The others have been removed for now. They crush the pills to put them in a little gel cap, and the bad, yucky cyclosporine liquid, too, is put into a gel cap, so... We can't figure out the big deal. Tonight, she fought and we held her down and then left the room for five minutes. She screamed for five minutes. We returned and she asked to take the next pills an hour early. She did, very cooperatively. Go figure. At 6 or 7 a.m. when she takes the next two, who knows?
There was an article about us in the Albuquerque Journal today. We were able to read it online tonight but couldn't see the photos. Kinsey has gotten a lot of email as a result and I assume some hits on the website but I haven't checked yet. She was feeling pretty excited to be such a star. She truly feels lucky to have such love and support. She told me again how sorry she feels for the orphans and other children who have no family helping them. "Without love and support," she says, "they probably won't make it." She talks about the kids on the 4th floor, the ones one doctor told her often don't get better. She feels sorry for them and for the doctors and nurses who work with them. She is such a compassionate kid and considers herself lucky in so many ways. She is. We are. But... I told my sister I thought it was unreasonable to ask God to not allow anyone in our family to get sick or to endure tragedy, but then again, we've had a bit more than our share already. Kinsey piped up and said, "Yeah God, pick on some other family." We all laughed and tried to think of awful people God should pick on, but no children we said.
We have laughed a lot more the last several days. Not that there's that much more reason to laugh; it's more a matter of, again, appreciating little things more and being grateful for minor triumphs. I was talking with an Albuquerque friend tonight whose husband is in the hospital and not doing well. We were comparing notes and talking about how such bad news can become relatively good news in the great scheme of things. Kinsey has a droopy eye and they just noticed the day before yesterday that the pupil in one eye is much larger than the other. CAT scans and neurologists and frightened moms. Bottom line: damage caused by the lung biopsy to a nerve. Best case scenario: it will heal on its own, Worse: it will always droop and have a smaller pupil and she will not sweat on that side of her face. That's it? She won't be blind? There's no bleed in her brain?
I remember the first cut she ever got. She toddled over to the fridge, opened the door on her own somehow and grabbed a glass bowl of grapes. We turned just in time to see her drop it. Glass shattered but I was so quick I picked her up before she took a step. Then I saw blood on my jeans and shoe and noticed her little foot was bleeding: on the top. A piece had bounced up and put a small slice in the top of her little bare chubby foot. She still has the scar. I told Audrey, "It's kind of like a new car getting it's first scratch. We can relax a little." She didn't like that analogy. I remember thinking, she'll always have a little scar on her otherwise perfect foot. And now, she has multiple scars on her chest and neck and back, some big and very dark, one very puckered and almost burned looking. She has already irreversible damage to her kidneys. Part of her lung is gone forever. She is incredibly hairy from the meds and puffy. And her eye may droop forever. But so what? Just let her get some of those elusive neutrophils for good and live and we can deal with all that petty stuff. She asked for a mirror tonight and we wondered why but gave her one. She was examining the incisions high enough up on her chest that she cannot see them by looking down. "Yuck," she said. But she, like us, didn't seem very shocked anymore.
One adventure we had the other day on pass that we all keep laughing about, inappropriately I'm sure, was our trip to the lakeside park. We debated about riding the paddle boats or surrey bikes. We picked the surrey bikes because we could all ride one. Three of us peddled and asked passersby if they knew CPR during the uphill parts. As we attempted to leave the park, we noticed dozens of police cars, crime tape around the little lagoon (in which we almost went paddle boating), a helicopter which had been hovering for 30 minutes, a dive rescue team truck and a line of traffic which wasn't moving. After waiting in that line for nearly 40 minutes, I walked to the front and explained that we had a little girl who needed to get back to the hospital. We got a police escort through the line to the front where we were asked some questions and had to give our driver's license, etc. "Did you see anything? Do you even know what happened?" Audrey said, "No, we were going to ask you but I assume you can't tell us." He said, "They found a body in the lagoon ma'am." Kinsey said, "What? What? What did he say Mama?" Audrey turned, "Honey, someone fell in the lake." The officer said, loudly, "No ma'am, it don't look that that's what happened." Thanks, officer. We later learned it was an Asian female and I haven't seen the news again to know more. We then proceeded to get incredibly frustrated trying to get to a Mexican restaurant on the other side of the river. Between the river, construction, and one-way streets, it seemed impossible, but we did it and Kinsey enjoyed her first real burrito in a while.
I will try to copy that article and email it separately to all of you, for those of you who didn't see it. We have a couple of good friends who will be sending us copies so Kinsey can see how famous she is. This is her second time featured in the paper. In Tucson there was an article published when she was a few months old called: Motherhood X 2. Poor Jilly Bean, the little sister of the famous one.
It's harder some days than others to laugh. It's harder some days than others to remember why we're here and what we are facing because we have so much to laugh and smile about. It's hard to get up each morning and work to make it as normal and as special as it can be and to know that it might be the last day she laughs for awhile, the last day she laughs. Today, I can't believe that. I believe those neutrophils know they have a few more weeks and are taking their time. 11th hour luck can't come too early and it seems to be the kind we have, so we'll wait. Her numbers will be back anytime and Audrey will call me as each of us does no matter the hour, and so I best get off this computer to open the phone line. More later. Thank you all again for your cards, calls, gifts, words of support. We are truly blessed by the kindness and support of family, friends, and a growing number of wonderful strangers, some of whom we hope to one day call friends. We know riding this coaster with us can make the best weary. Please hang on and keep sending your prayers and positive thoughts our way. We have only been on this nightmare ride for two months and we met a little girl and her mom a couple of days ago who have been on a similar ride for two years. The little girl is 5 like Kinsey, but Kailee was diagnosed with AA 2 years ago. She is 30 days post transplant and doing very well. She, too, had no neutrophils for a long time. The meds worked, but then she relapsed when she went off them. Looking at this sweet little girl, shy and bald and beautiful, I didn't know whether to feel anguish at the possibility of two years of hell or joy at the possibility of an eventual positive outcome (as she seems to finally have) after any amount of time in hell. Like I told the Albuquerque doctor, "If you were to just tell us we have to go to hell for a period of time, our bags are packed. We're there. We just want to have some reassurance that the trip through hell will have a different final destination." For today, her fever has now been absent for 7 days and 1 hour. Come on neutrophils!
| Previous | Next |