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Wednesday, December 17, 2008 9:03 PM CST

Hi guys, I ordered extra Christmas cards (it's a picture of our family) so I could send some out to any of you who might like to have one. I know I like to have pictures of the missionaries I know (all 2 of them) in my Bible to remind me of them, so if you'd like a picture of our family I'd love to send you one. Please email me at lesley227knology.net and give me your address.

Check out our new pictures at http://lesleyburnette.shutterfly.com too.

Merry Christmas and God Bless us Everyone!
Darryl, Lesley, Wen and Kate.

Tuesday, December 16, 2008 7:33 PM CST

Hi! No news is good news! Or, no time.

Kate is LOVING Kindergarten and so are we.

No other real news to report. She is busy with school, and she goes once a week to the tutor, once a week to her dance class, once a week to OT, and once every two weeks to PT.

I have updated our picture page with some new pictures. I will get some 1st day of school pics on there eventually but they are in Darryl's camera and I haven't gotten them off it yet. http://lesleyburnette.shutterfly.com/

I will do a real update before Christmas, I promise. I just got my order of cards today, so I haven't even done Christmas cards yet!

Ho Ho Ho! Lesley

Tuesday, December 2, 2008 8:04 PM CST

Hi, a very very short update:

Kate started back to school on Monday! She is thrilled and very excited, and we are too. She loves it. Everyone at her school has been so welcoming and warm and inviting.

Here's a website where you can see a family photo we just had made at Bookout Photography:
http://bookout.squarespace.com/

We had a great Thanksgiving, with many blessings to count.

Keep us in your prayers,
Lesley

Friday, November 21, 2008 1:11 PM CST

Hi everyone! I don't have much to say other than Kate continues to feel great and have a pretty good appetite. Unfortunately she threw up Tuesday morning (ate egg, threw up, immediately at biscuit and gravy, threw up, and while she was still vomitting said she wanted to eat some marshmallows and gravy and as disgusting as that is, she did eat that).

Then that night her GI button suddenly got stuck/stopped up. We could not get it unstuck, and the only option was going to be to go to Birmingham to get a new one if Kate wouldn't take her meds by mouth. And we couldn't go to Bham that night or the next morning as we had family portraits made then. Fortunately it finally and suddenly came unstuck (it might or might not have been the green coated christmas ornament hanger I stuck in it). In any case, I realized that home health had never sent the buttons we ordered, and have called them again and expect them today. We are going in to our pediatrician on Wednesday to get it changed out. She has a nurse whose daughter has a button and the nurse is going to teach the whole office how to do it. Again, Kate gets to be the center of attention of a group of people saying "Huh, I've never seen that before."

We did get family pictures made Wednesday at Heather Bookout Photography (google them!) and Heather did such a fantastic job with us all. Kate is so difficult to photograph because of her light sensitivity, but Heather overcame that quickly and I'm so eager to see the pictures next week.

Kate is going to Jump Zone tonight for a party given by someone from her classroom last year, and I'm very excited for her to be able to see her friends. I am working on a proposal, so Wen is going with her to help her slide and jump.

I have everything ready to register Kate for regular school and just found out that it's going to take longer than expected because she needs an IEP (her individual education plan) meeting with all teachers and therapists before she can be discharged from homebound care to regular school. And a meeting is not easy to come by at the end of a term when everyone else needs one too. So please pray that all her team will miraculously have an opening early in the week after Thanksgiving and Kate can get started in school.

I am very thankful for all of you lovely people who keep us in your prayers faithfully, who check our website, who send us cards and gifts, who draw up medicines, do laundry, cook meals, and shop. I'm thankful for the friends and family who help us take care of Kate and who make her feel like center of the universe (that has its drawbacks too). I'm thankful for my neighbor Vickie without whom my life wouldn't work. I'm thankful for Kate's teacher and tutor and neighbor who reads with her and her many therapists who always find fun and creative ways to work with her. I'm thankful for my job that gives me a respite and a salary. I'm thankful for Wen who is the best big brother ever and is not too awful for a teenager. I'm thankful for my husband Darryl because this is a team effort. We will be married 20 years this spring. I'm thankful that Kate is just happy to be here. She truly just doesn't care that walking, hearing, writing, everything, is difficult. She finds fun and happiness in everything. Oh, and I'm thankful that my sister is engaged and moving into her new home this weekend. I'm VERY thankful that no one asked me to come help move.

God bless you with friends and family the way he has blessed us. Happy Thanksgiving! Lesley

Thursday, November 13, 2008 5:03 PM CST

Mid updated update - the photo is just after Kate lost her second tooth. I have added a couple of new pics to the photo page too.

Hi! No news is good news, right? Kate is feeling GREAT - she has a wonderful appetite and hasn't thrown up since last Monday morning. We have her medicines pared down to morning and night, which is nice for us and her. Her good appetite means that she has food in her stomach when we give the medicines and I think that has made a big difference.

She continues to do well in her school work, and is very busy with lots and lots of activities given to her by her occupational therapists and her physical therapist. She has just gotten evaluated by the school system's physical and speech therapists, and will be getting some PT through the school but we aren't sure yet about speech. Her speech problems seem to be related to muscle weakness in her tongue, and she also has that nasally sound that people with hearing loss can have.

Speaking of hearing loss, we also have managed NOT to lose any hearing aids yet.

Kate had a great time at Halloween - she was a Barbie witch. We went trick or treating with two other families in the neighborhood next door. Last weekend we went to Auburn for the football game and she really enjoyed it. We went out to eat Friday night. Kate had fried oysters for the first time, so not only is her appetite great, but she's more willing to try new things. Week before last we went out for sushi and she ate a whole California roll save one piece, regular rice, fried rice, and miso soup. The three of us were all done and had to sit for about 20 minutes waiting on Kate to finish.

We also walked all over Auburn, and while we were in the bookstore her second tooth fell out. The tooth fairy does come to RVs in Auburn and she got $6.

Kate's also gotten some "sticks" (crutches) and is doing much better walking on them, although someone still has to keep their hand on her to catch her as she's not very steady yet. We haven't used the wheelchair in over a month. Mostly she uses her gait-trainer (walker).

So, that's about all that's new with us. We are finally settling into some sort of a routine, just in time for it to be thrown all off by the holidays, but with help from kind friends to shop for us, arrange Kate's medicines, and provide us meals, we are muddling through, albeit rather exhausted.

My goal is to have Kate back into school after Thanksgiving. I think this will be a nice few weeks to get acclimated to being back in school during a time when maybe things aren't so strenuous. I have some limited choice in what I can do, so please pray for the right place for Kate.

Continue to pray for Kate's physical strength and coordination. I want her to be able to walk by herself again. I asked her the other day if it bothered her that she couldn't walk without her walker and she just flippantly said "Nah."

Keep praying for us too. It's still very emotionally rending when we think about our future and Kate's, and I suppose it's not something we will get used to, but we can learn how to live with it. We need rest and strength.

Thank you for all your prayers and cards and expressions of love and care, Blessings, Lesley

ps. please pray four our Camp Sunshine friend Bowen Downey who is starting a transplant for DBA. His link is somewhere on the page!

Friday, October 31, 2008 7:43 AM CDT

Hi,

Finally an update!

Kate is feeling much better than she did the previous two weeks. I think that she must have gotten some sort of stomach bug as she had diarrhea and vomiting all week. Then when we decided to give her gut a rest by not giving her meds or formula for two days, her calcium and CO2 dropped. We pumped in a few liters of Pedialyte into her over a couple of days, and continued to have her drink it and pumped some, and added back in her meds, and the turnaround is tremendous. She feels very good, she’s got a good appetite, and normal bowel movements for the first time since June.

Unfortunately, even though she’s got a good appetite, she never eats more than a few bites. Definitely not enough to sustain herself much less grow/put on weight. She has lost a few pounds since we came home from the hospital (she gained weight there because she got so much formula every day). Whenever she feels the least little tiny bit full or her medicine makes her feel even a little bit weird, she starts vomiting. Sometimes we can distract her enough to take her mind off it, but rarely. In the past she would spit up and be done, but now she’s dry heaving and throwing up everything. So that’s still a real concern. We are trying to give her some formula at night but she will wake up vomiting from that sometimes too, making the whole exercise fruitless. Some of the problem is that once she’s weakened that valve by vomiting, she’ll continue to have episodes for days. Her favorite foods are soft tacos with no meat, cheese enchiladas (from Little Rosies only), chicken noodle soup without chicken, taquitos, and ribs. She has started eating an omelet at breakfast, which I’m thrilled about since cheese adds calories and calcium.

Kate has been very eager to get a pair of crutches (“those sticks”), and cried at PT when there weren’t any in her size. Her therapist ordered her some, and she was very excited when she first got them, but when she realized they were rather difficult to use she cooled off some. She’s gotten back to them, although she cannot use them without someone to hang on to her. I have a picture of her walking in them and will hope to get it up on the site soon.

Kate accidentally pulled her GI button out last night, a 3 hour ($150) trip to the ER ensuing. The hole left in her stomach when it first came out was the size of your thumb, but Darryl said by the time he got to the ER (20 minutes?) it closed up and looked like a belly button. They had to put two “stretchers” in there in order to open it up enough to put the button back in. And good thing the button wasn’t damaged – Huntsville Hospital DOESN”T HAVE GI BUTTONS!!! What are you people thinking??? If we hadn’t had it, they would have put in some sort of catheter and sent us home until our home health company mailed us one. Who ever heard of such a thing???????? I called and ordered one today so we’d have spare. Should we really have to bring our own medical supplies to a hospital?

Katie got her first report card and it was all 100s, except math, which was a 99. Figuring out how to get her back into school is progressing very very slowly. I think she would really enjoy being in school, although she would need to have naps occasionally (which they would allow).

For the first time since June, Kate played her Wii Cookin’ Mama game and did very well with it. The tremor in her hands is still very bad, but she’s figuring out how to get things done. She dresses herself almost completely, and buttoned some buttons at therapy yesterday.

She’s also been going to a new dance class called Dance Your Dreams, which she calls “dance class for people who can’t walk very well”. I think I said this last time. Anyway, she still enjoys it and we are very grateful to the people who provide the class to our community.

We’re going to try out a trip to Auburn with the kids, we’ll need prayers for that!

I’m reminded again how grateful we are for the people who help us. I came home Monday night to dinner sitting on my front porch, cooked for our family by someone I don’t even know (at least I don’t think I know them!). We get delicious meals twice a week and help with errands and grocery shopping and drawing up Kate’s medicines. Even with that help life is exhaustingly full, and we don’t do any activities except 1 dance class, 1 guitar class, one soccer team (who won their league championship last night – Go Tigers!), and one Sunday afternoon baseball team.

Please pray for Kate to be able to eat a sufficient quantity of food and to not vomit any more. It’s very distressing! Also pray for her to continue to progress physically and be able to walk unassisted. Pray for the right place in school.

Thank you for your prayers and concern and help. God Bless You!

Wednesday, October 22, 2008 1:23 PM CDT

Hi, another week, another short update. Sorry!

The best thing that happened to Kate last week was the first class in her (as she says) "ballet class for people who have trouble walking". She enjoyed it very much. It's a Dance Your Dreams class at Merrimack, and there are sweet volunteers who help each participant. I admit it was a bit rough on me - it was the first time I've seen Kate in a group of handicapped children and that's a tough place to see your kid be. I think only one other child was only physically handicapped as most had some form of mental disability also. But they all had a great time, if the noise level was any indication. She has the next class tonight. Pray that I can find her ballet shoes!

Kate has really struggled this week with her GI tract. She's thrown up quite often, usually about once a day, and had diarrhea all week (her normal 1x/day movements were diarrhea, she didn't have constant diarrhea). Sometimes the vomiting and diarrhea happened at the same time and that was very un-fun. We have decided to give her a gut rest this week, giving her no formula, no milk, and no medications other than the periactin (appetite stimulant), CoQ10, Sudafed, and Prevacid. She was taking all but the prevacid before she got sick. I'm seeing some improvement, but she threw up yesterday afternoon. Sometimes its from getting gagged on medicine, sometimes she just feels a little sick, then starts vomiting. Also she has no appetite and all and eats almost nothing. Sunday she ate 1 pancake at breakfast and 1 or 2 Ritz crackers with peanut butter late in the afternoon. She ate nothing else, but still managed to throw up in the hallway at church (sorry Lydia!). Something's got to give there.

So, your assignment, please, is to pray for Kate's appetite and for her digestive system that it would be strong, healthy, and operate normally. Please ask everyone that you know to pray the same. I know a lot of people have stopped reading the website now that we are stable, so please find whoever you can to help us this way. We are rather distressed about it.

Blessings, Lesley

Wednesday, October 15, 2008 1:13 PM CDT

Hi All, quick update only. We've had a good week (other than the fact that Darryl and I went to the Auburn game), but now Kate's having a bit of stomach trouble and has been throwing up again. Pray about that.

We saw the "neuro-opthalmologist" and did a yukky retina test (involved laying wires across Kate's eyeballs and making her look at a strobe light) and he said she does have defective rods in her eyes, and therefore should be night blind. Of course she's not. He said, as ALL her doctors do "Well, I just don't know." I just said thank you very much and left. We'll wait to hear from her regular eye doctor if he wants to do the vitamin A therapy or not.

You can see pictures of the fundraiser last week at www.lesleyburnette.shutterfly.com.

Pray for Kate's tummy to be settled, for her to have a good appetite, for her physical strength and improved walking and hand use. Pray for us as we start to make decisions about when and where to send her to school and what grade to put her in.

Blessings, Lesley

Tuesday, October 7, 2008 1:02 PM CDT

Kate has had a wonderful week. She feels so good, she has so much energy, and her appetite has improved (a little). She has discovered Chili’s baby back ribs, and between those and soft tacos with no meat, we might be able to keep her fed.

She’s only thrown up once all week, and that was my fault. I was given the good idea to make a “green smoothie” out of her nighttime feeding, and so I mixed up her formula with her creatine, plus some protein and fiber and some spinach. I was blending it all up and Wen came in the kitchen and got all excited and said “Oooh! Can I have some, can I have some!?” I said “Sure, get a glass” and held up the pitcher. He changed his mind. Anyway, because of the protein powder it made a huge volume. I turned down the rate on the pump, but still, just at the end, she threw up a big green slick. I’m really glad I didn’t put pomegranate juice in it.

We continue to work hard on her school work, and I’m using this fall break week to try to get a bit ahead, as we are like 6 weeks behind the school’s schedule on work. Kate is very proud of herself for making another 100% on her spelling test and a 95% on her math test.

Kate’s going almost everywhere in her walker now, and we use the wheelchair only occasionally, when we’ll be on terrain that she can’t roll the walker over. She’s been seeing a chiropractor and she LOVES it. She just flops her little self face down when it’s time to be adjusted (it’s just a very gentle thumping along the spine, no neck cracking or anything like that).

Last Wednesday we went to Birmingham to see her eye doctor. He changed her prescription only slightly. It’s either good that her eyes aren’t changing much or bad that they aren’t changing much if it means they aren’t changing because they aren’t growing. I’m not going to worry about that. We are going back Thursday for a more in-depth look at her retina. Retinitis pigmentosa is a common problem associated with Kearns-Sayre Syndrome, so he’s going to be looking for any changes in her retina. He doesn’t see any yet, but if/when he does, then we will consider high doses of vitamin A, which have been shown to slow progression. KSS is usually not diagnosed until the teens, so we are fortunate to get an early diagnosis and be able to take precautionary supplements. Kate takes bicarb to balance out the excess lactic acid in her body, L-carnitine and creatine to help her muscles have energy, and CoQ10, which has helped some mitochondrial patients.

Wednesday we also saw the ENT and audiologist, and found that Kate has hearing loss. I don’t know if it’s because of the trauma of the hospital this summer, or because of the KSS (hearing loss also goes along with mito stuff). But it’s only moderate loss (she’s been getting along fairly well, though she failed a hearing test for the school system) and will be easily helped with hearing aids. She chose white hearing aids with bright orange Hawaiian flowers. I was a bit concerned about the color, but after I spent a good bit of time this weekend looking for someone else’s lost hearing aid, I’m wondering if we can get them in a brighter neon color with strobe lights and a loud alarm. I will tell you how much they cost only because I want to tell everyone who has given us any money at all, or worked at the fundraiser this weekend, how much appreciated your gifts are. They cost $5600 and are NOT covered by any sort of insurance. I contacted the state children’s rehab, the Alabama Institute for the Deaf and Blind, and also some sort of organization that helps kids get hearing aids and could not qualify for any of their programs. So today I’m stopping at Redstone on the way to get Kate and getting a check for the full amount from the Burnette Family Fund. Thank you all so much!

The fundraiser was the highlight of our week, of course. The weather was so beautiful. Chilly in the morning and blazing hot in the afternoon, but that’s Alabama. There were so many items for sale in the yard sale, including appliances and furniture. I was thrilled to get my garage cleaned out of the huge pile of stuff that’s been waiting for the sale! The bands that played were fantastic, and each so different from each other. The bands from Cove Church, Aldersgate Methodist, and Rivertree all played, plus a lovely couple who played bluegrass. The kids enjoyed the inflatables (even the teenagers had one – the bungee run) and Kate rode down the slide with her teacher, Mrs. Patrick. The adults enjoyed visiting and the music and beautiful day, and everyone enjoyed the hot dogs and soft drinks. Darryl and I were so blessed to meet several people we have talked to only online, including two more mito families, one with KSS. I have searched and searched for months to find someone else with KSS, even starting a Yahoo newsgroup, but only ever found a 15 year old in Saskatchewan, and his condition was very discouraging to us. And wouldn’t you know it, just down the road in Gurly is another family, with a lovely and gracious 29 year old daughter with KSS.

So many volunteers from Rivertree, Aldersgate, Holy Spirit, and family and other friends worked really hard at the fundraiser. A boy scout troup camped out to guard the yard sale items, and got sprinkler-ed on at 4am! It was a real joy to see so many different people from so many different traditions and situations working together, and even more joy to know that they were working for us. We feel very humbled and grateful that anyone would be willing to do such for us. We have already been greatly blessed by God with family, love, and material supply, and this is just heaping blessings on blessings. It was my prayer for the fundraiser that everyone who worked on it would feel like it was a great success, and therefore would do such a thing again for someone else. It was definitely a great success. The current total raised at the fundraiser and as a result of the promotion of the fundraiser (from people who gave me checks at church or who deposited money directly in the Burnette Family Fund) is just over $20,000. I’m just amazed and so thankful. If you did not feel led to give or to be a part of that (or even if you did and want to do more), I would encourage you to look around and find another family with a handicapped child and find a way to help them. I know a number of such families and have never met a single one who complained or asked out of the blue for help, but I know they need it. A card, a meal, an errand, a gift, anything. You can feel very alone and isolated and forgotten in that situation, and are always tired and stressed.

“All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God. Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.” (2 Corinthians 4:15-18) I hope that the grace we have seen reaches more and more people, so that thanksgiving to Him and for His glory will overflow. Darryl and I do not lose heart, because so many people are being used by God to renew us day by day. And just think how big and fat Kate’s eternal glory’s gonna be if this situation is “light and momentary” in comparison!

Please pray for Kate as she adjusts to the hearing aids, and also pray that she will establish good routines to provide for the care and keeping of those solid gold (might as well be) puppies. Pray for Kate to walk independently, and for her short term memory to improve and for her to progress rapidly with her schoolwork. Pray thanksgiving and blessing for everyone who keeps us afloat with food, errands, and gifts.

Blessings, Lesley

Sunday, October 5, 2008 9:51 PM CDT

Hi all! A quick update and hopefully more tomorrow. What a WONDERFUL weekend we've had. The highlight, of course, was seeing how God provided for us through the Charity Jam fundraiser on Saturday. Beautiful weather, beautiful people, and over $20,000 raised (not all that day, but as a result of the fundraiser). Thank you God and thank you to everyone from Rivertree Church, Aldersgate Methodist, Holy Spirit School, and so many more (I will list them all when I find that paper that had it on there). The bands were fantastic too. And I've got a nasty sunburn.

Kate feels WONDERFUL and is so happy and full of energy and joy. She's only thrown up once since last Friday, and that was my fault (a volume issue).

You can see pictures of the fundraiser at
http://lesleyburnette.shutterfly.com/

Blessings, Lesley

Monday, September 29, 2008 11:50 AM CDT

Hi everyone,

We are getting very excited about the fundraiser this Saturday. It sounds like it’s going to be a huge event – there are like 3 or 4 bands, hundreds of hot dogs ordered, 4 inflatables, and the yard sale includes at least one whole houseful of furniture. And of course, it’s not just a yard sale for us, but the entire and vast Hampton Cove community is having yard sales.

Some of you have asked for direction to the Hampton House, so here goes: Go East on Eastern Bypass (Old Highway 431), Turn Left onto Hampton Cove Way at the main “Hampton Cove” entrance with the large waterfall. Take the 3rd right turn onto Honors Row. Go to stop sign, turn Right onto Hampton Cove Way; this dead ends at the Hampton House and there will be 2 parking lots on your right.

In case you haven’t heard, a lovely group of people from Rivertree Church in the Hampton Cove community have used their “Big Give” seed money to organize a fundraiser for Kate, to coincide with Hampton Cove’s fall yard sale date. They’ll be providing morning coffee and munchies and later hot dogs for lunch. They will be taking donations, charging only for food, and the proceeds of the sale of the yard sale items along Mill Run Road will go to the Burnette Family Fund at Redstone Federal Credit Union. The yard sale will start at 6:30am and the bands at 10am. If you can’t attend but would like to donate, you can do it to the Burnette Family Fund at RFCU 220 Wynn Drive, Huntsville, 35893. www.redfcu.org.

So many lovely people have lived out the encouragements of Peter and Paul:
• Serve one another in love. Gal 5:13
• Serve wholeheartedly, as if you were serving the Lord, not men. Ephesians 6:7
• Everyone should use whatever gift he has received to serve others, faithfully administering God’s grace in its various forms. 1 Peter 4:10

I prayed thanks this weekend for our many friends, family, and acquaintances who have served us, as I prepared to teach the 7th Grade Sunday School lesson on Matthew 20:20-28, that just as Jesus came to serve us, not to be served, so we are to serve others. Then in my Bible study last night Beth Moore was encouraging us to spontaneously give away whatever people complimented us on (sort of). All the people who are making us food, doing our shopping, and providing the money to pay our bills (and to share with others who are in harder situations that we are) are making our lives so much easier. Part of the scripture I read this week for Bible study was from Psalm 125, where God surrounds his people like the mountains surrounding Jerusalem, so that they cannot be shaken but endure forever. He has done that for us by encircling us with loving and giving people. I admit to some shaking, but I do believe our faith will endure forever.

Thank you again and again.

Now, on to Kate. Kate has had an interesting week, and it seems really long. We had a real problem with vomiting during or after every meal for two days last week. Sometimes it was when she received her medicine, sometimes it was when she got choked or gagged. Sometimes it was during a meal, and she would start to feel sick, throw up a bunch, then go on eating. Usually this happened at a restaurant (Rosie’s, Gibson’s). Finally on Friday morning she threw up twice and I took her to the emergency room. I can’t let her get dehydrated, as it will throw off her pH level and send her into lactic acidosis and possibly back into the situation we got into in June. At the ER they gave her an IV and some Zofran and did blood tests. She was funny, in a sad way, crying about the IV all the way to the hospital. She said she thought Wen should have to get an IV every day and sleep outside and that would make her feel better!

1.5 hours after we got there, Kate was hungry and wanted Little Rosie’s, so I went and got it, and she at ½ a soft taco (no meat!) and chips and cheese dip. We would make her stop eating and take a break every once in a while to be sure she didn’t overwhelm her stomach and the whole time she’s sing “I’m hungry! I’m hungry!” I’m not certain what the ER folks thought about us bringing in a kid for vomiting and feeding her Mexican food 2 hours later, but it seemed to work. Kate hasn’t thrown up yet! I’m trying to be less strict about eating and medicine times, and just go with what she wants. It’s helping with the vomiting, but she’s not eating much. We are giving her 8oz of formula in the pump after she goes to bed, but that’s not enough overall. It’s a catch 22 between supplementing enough to keep her healthy and not supplementing too much so she’ll have an appetite. I have started back giving her an appetite stimulant, Periactin.

I tried to get her to take the Periactin by mouth, but she refused. She says she doesn’t remember that she took it every morning and night before she got sick.

We did realize that she does have reflux, when once on Friday or Saturday she said she tasted the water in her throat when I flushed her GI button line. She’s getting Prevacid 2x/day now. Pray that it helps.

One thing I'm very glad about is that her blood tests showed normal levels, meaning that it's still OK that I'm not giving her some of the supplements. And also good, her lactic acid level was elevated, as we would expect, but not very much! Yeah!!!!

She’s working hard in school and I’m seeing improvements in her reading.

Friday night Wen had 3 other boys over playing football in the backyard. Kate wanted to go out there too, so she stayed out with them for an hour or so on a towel (although I believe she spent a good bit of the time crawling around in the grass). Saturday she had friends over and went over to their house for dinner. She slept all day Sunday! Sunday night she took her walker to church instead of her wheelchair, and also took her walker to Gibson’s today. She walked around to visit her Gibson friends and also to the cash register to get gum.

Kate and I will be going to Birmingham on Wednesday for an eye doctor appointment, and she has an ENT appointment the same day back in Huntsville.

Kate is dressing herself almost completely, which is a big help to me in the mornings.

So, please pray this week for the success of the fundraiser, for the workers/organizer to be greatly blessed, for our safe and TIMELY arrival at both Dr. appts on Wednesday. Please pray for Kate’s appetite to increase and for her to eat and take medicines without any vomiting. Please continue to pray for her physical improvement in the areas of walking, talking, and using her hands/arms, and for her memory to improve to help her with schoolwork.

God bless you all, have a great week!

Monday, September 22, 2008 4:50 PM CDT

Hi everyone,

We've had another great week and attempted our first trip away from home. We went to Anniston on Friday for our nephew's birthday, and left the kids with their aunt and uncle and Darryl and I went and stayed at the Victoria inn. Then Saturday we four went to Atlanta to eat with friends and then go to the Braves game. We had a great time, the Braves won, and Kate got her face painted, as you see.

Kate is speaking much better, and her private speech therapist said don't come back (since we expect to get ST from her school). She can walk if you hold her hands, and if her balance is good, even if you hold just one hand. But she still loves that wheelchair! She is going to PT twice a week, OT twice a week (once at home), so it's a lot of work still and she still has a long way to go to be able to walk on her own or have legible handwriting.

School is going well and Kate got a 100n her first spelling test. The teacher comes for one hour each on Thursday and Friday, and the rest of the week we do her lessons with her. It's basically working full time and homeschooling also. Some of her work gets done during the day, but when you see her schedule of therapy, plus tutor visits, plus random things like getting her glasses fitted, and the absolute necessity of at least one (and preferably two) naps a day, you wouldn't believe we could get anything done. Plus she has to do some of her OT/PT exercises daily. I want very much for her to go back to school and be able to flow into her classroom, but we started a month behind, and we don't seem to show much hope of getting head. If we have to let things slide, I suppose the school work would be it, as she could repeat a grade, but she'll never have a chance to make her neural connections again and the therapy has to be done.

We have been discharged from Hospice, which I think is wholly appropriate. Hospice Family Care, and our nurse Jan and social worker Martiel were very helpful to us and good to us and we have been fortunate to have them during this time, but I think we are ready to go it alone.

I took Kate on Thursday to the school offices to redo her IEP (special ed plan) and at that time she also did a vision and hearing test, which she had to pass before she could be evaluated for speech. She failed both! She had one her old glasses as her new ones needed fixing, so hopefully that's all that was (I'll get that redone soon) and as for the hearing, I have put her back onto Sudafed PE, which she took before she got sick, which helped her hear better. I will have to get her into the eye and ENT docs very soon.

I also took Kate for a blood draw at the pediatrician's to check her electrolyte levels. Her numbers are all good, and her magnesium and sodium were a little above normal, so we decided to stop giving her those meds and WOW what a wonderful difference that makes. We only have to give meds 3x/day now, and those particular ones we cut out were high volume meds, so the volume is less. Kate is good at swallowing pills, so I'm going to see if any of them come in a pill form too. Right now she's taking calcium carbonate, bicarb, l-carnitine (all liquids), CoQ10 and Sudafed (pills), and creatine (powder that goes in her formula).

Eating is still a huge issue. I don't want to give her so much formula that it squelches her appetite, but she also has to get enough calories to continue to improve and gain weight (weight gain will help her with her physical issues like walking/hand tremors). We have been only giving her formula at night, after she goes to bed. One can of formula over one hour using a pump. But I have decided that's not enough, and I gave her a couple of ounces this morning and just gave her 6 ounces during her nap. She eats just the teeny tiniest amounts, and never wants anything but crackers/bread/noodles.

She's also still throwing up, but fortunately not every day. Yesterday we stopped at Pappadeaux's in Atlanta and we were so thrilled she was just munching out on some giant coconut shrimp. Then she got choked and threw up so very very much. After I got her all cleaned up and changed, she said she wanted to eat. She chowed down again, and then started throwing up everything again. They might not let us back in that place.

I'm still not giving insulin, but still checking glucose mostly 3x/day. Kate's glucose numbers are rarely low, and occasionally high, but mostly normal to slightly high.

Please pray for these things:
* Appts at the doctors (eye and ENT) very very soon
* Appetite and not throwing up
* Blood sugars stay normal
* Electrolyte levels stay normal given change in meds.
* For her success at school, particularly improvements in reading and in comprehending addition/subtraction and to be able to "see" how many of something there is, without having to count it out.

Please remember our fundraiser coming up October 4th.

Thank you to everyone who fixes us meals (how in the world would I ever find time to cook?), goes shopping for us, sends us cards and notes, sends us money (I frequently find random $$ stuck into my purse, Kate's backpack, my camera bag), is working on the fundraiser, and particularly everyone who prays for us. The things that we really and truly need can only come through the power of intercessory prayer.

God Bless You All! Lesley

The Charity Jam 2008-Eat, Jump, Jam and Play……All for Katie May fundraiser will be at the Hampton Cove Hampton House on October 4th from 6:30 am on, with a yard sale (please come buy my stuff!!!!), moon bouncy stuff, live bands, food, etc.

If you wish to make a donation, you can do it to The Burnette Family Fund at Redstone Federal Credit Union
220 Wynn Drive
Huntsville, AL 35893
(256) 837-6110
Toll Free: (800) 234-1234
www.redfcu.org

Friday, September 19, 2008 11:15 AM CDT

HI everyone,

I understand that a letter went out to all Holy Spirit families in the Wednesday folder with information about the October 4th Charity Jam 2008-Eat, Jump, Jam and Play……All for Katie May. We did not receive this in our packet, so I cannot be certain of what the letter said, but I have been told that it says that Kate has maxed out her insurance and that we are completely financially responsible for all her medical costs. I want you all to know that that is NOT true. We haven't met her lifetime max and Blue Cross Blue Shield is still paying our medical bills.

We do have copays up to $35 for each of her many medications, plus fees for three to four therapy visits each week (we are maxed on for the year on that), childcare, tutoring, and various and sundry things that she needs. I hear that her formula and pump rental totals $450 a month after insurance, but I haven't gotten a bill yet. We do expect her future to require a good bit more in the way of assistive technology and other modifications. Any gifts are greatly appreciated and needed and have been so helpful up to this point, but it is important that no one misunderstands our situation.

I don't know what happened in the letter, and I know that no one did it intentionally, it's just a miscommunication or some misinformation, but please accept my apologies and do email me if you have any questions.

Blessings! Lesley


The Charity Jam 2008-Eat, Jump, Jam and Play……All for Katie May fundraiser will be at the Hampton Cove Hampton House on October 4th from 6:30 am on, with a yard sale (please come buy my stuff!!!!), moon bouncy stuff, live bands, food, etc.

If you wish to make a donation, you can do it to The Burnette Family Fund at Redstone Federal Credit Union
220 Wynn Drive
Huntsville, AL 35893
(256) 837-6110
Toll Free: (800) 234-1234
www.redfcu.org

Tuesday, September 16, 2008 9:41 PM CDT

Hey everyone,

Here are some of the highlights of our week:

• Kate got a new bicycle (because Wen got one) and hers is a Barbie bike. She’s been riding it every day.
• Kate has had lots of homework and it’s taken us all week to get it done! This does confirm my belief that I would be a terrible homeschooler. We have recruited neighbors, tutors, uncles, etc. to help us out with this. She does perform much better for other people!
• Kate’s glucose levels are a bit high, particularly since she has a new, lower range of acceptable now that she’s off insulin. But sometimes they are still low. One area of concern is her lack of eating, still. Plus all she wants to eat is white flour stuff like biscuits, pasta, and waffles. I had a talk with her today about the effects of white flour on blood sugar levels (she said “Huh?”) but I think it hit home when I said “more meat and vegetables or you have to start the shots again.” She ate better at dinner tonight.
• She has been throwing up a bit more lately, mostly around her 10am medicines, and I think it’s mostly in her head. We have “discovered” that standing up will prevent vomiting.
• Kate and I went to Target the other day and spent all her birthday money (that we had left). She got pink sparkly shoes, undershirts, books, a new lunchbox, and a whole outfit of exercise clothes – tank top, pants, jacket. She wore them the next day and that afternoon we went to the gym! She did the leg press (yes, really), we rolled a 4lb ball to each other, and setup an obstacle course to step over. She also jumped off the boxes (with help).
• Sunday morning (I think it was) I woke up to Kate getting in my bed. I assumed that Darryl had carried her in there and dropped her off on his way into the bathroom (at some point Sat. night he went and slept in her bed) but as it turns out she had crawled from her bedroom (D helped her get out of bed) to ours and climbed up in my bed.
• Kate went to pool therapy yesterday and loved it. She splashed and swam and played and had a great time. I’m not certain how much therapy she did, but she did get lots of exercise. She also had speech and occupational therapy yesterday, so mostly the only other thing she did was sleep. Her therapist is fitting her for some sort of brace for her pitiful little right hand, and also fixed up a pen to better help her with her left hand, which she now writes with. We also strap a ½ lb bag of beans onto her arm while she writes, it stops the tremor. Her homework involves a tremendous amount of writing in worksheets, but she doesn’t seem to tire.
• Did I mention that a couple of weeks ago Kate and I went to an open house for a special dance class for children with physical limitations? They have a teen volunteer who holds/helps/moves the child and they have classes and performances and, the most important thing, costumes. We are very excited about it. The classes will start in mid October, after Fall Break. If any of you are interested in such a class for someone you know, contact Merrimack Hall.
• Please remember our fundraiser on October 4th. We are greatly blessed with good jobs and insurance and helpful family, and so many of you have been so generous to us, but we do have therapy and tutoring bills and there are many things we would like for Kate to be able to experience (she already knows there is skiing for people in wheelchairs!). I have included the information about the fundraiser at the end of the update.

Our lives are jam packed, every minute. Work is very busy for me right now, and Darryl struggles to get his hours in (thanks again all you great Sparta folks who have donated enough time to allow me to work only what I want to, although this week and last it’s been a bit more than that!) and the time we have at home is filled with the usual things that go along with children, like homework and soccer games, but also with extra schoolwork with Kate, doing therapy exercises and speech games with her, preparing her meds and bags and lists of things for the next day. There is little time to reflect, but maybe that’s a good thing! I know that the feeling of dread and fear that I had before is gone. We have stood with our toes hanging off the edge of the bottomless pit, we have faced the worst and realized we could survive. We had considered a life without Kate, and then a life with an invalid Kate, and now to have a Kate that does homework and goes to dance class and gets in trouble for not being polite is a real blessing. What happened happened, and now we can get on with the business of living. I still have my moments, get a good cry in, feel sorry and sad and pitiful, and then go clean something up. I will say that our house is better decorated than ever (I’m finally hanging up stuff) and the garage is neat as a pin (except that one whole ½ is taken up with stuff to sell at our fundraiser). I know it’s a psychological response to try to control some little corner of my out of control life. Hey, I just realized that part of why I like my job so much is because it’s all about sorting and organizing data in ways that make sense and can be easily used. Soooooo unlike my life!

Darryl and I have each found places to reconnect with groups studying God’s word, and places to serve. The best way to stop feeling sorry for yourself is to stop focusing on yourself! We are so blessed to have our church, which is full of such interesting people who, I realized after reflecting on this in my Bible study this morning, don’t dwell on what’s wrong with each other, but are very accepting and encouraging. What do people in situations such as ours do without such a group? Get yourself to church – you never know when you might need them – and certainly someone there needs you now.

Wen says he needs the internet for his homework, so I’ll end now, but as always I say Thank You over and over for all of you who encourage us, feed us, care for us in so many ways from helping us with Kate’s education to running to the store for us. It means so much to us and makes our lives so much better. God bless you all. Please continue to pray for us and for Haley Callahan’s family.

Here's the information about the fundraiser:

Hello All,
I want to share with you a wonderful opportunity that our Life Group has found out about to truly be a blessing to a family here in Huntsville. There is a 7 year old little girl named KatieMay Burnette who lives here in Huntsville. Kate, as she is called, was born with an extremely rare type of anemia called Diamond Blackfan Anemia and has also recently been diagnosed with a second and even more debilitating disease called Kearns Sayre Syndrome. I will attach an excerpt from her Caring Bridge webpage that is written and updated by her mother Lesley on a daily basis:

Kate just turned 7. She was born with Diamond Blackfan Anemia (she didn't make red blood cells) and had a bone marrow transplant when she was 2. It was very successful and she has lived a very normal life since then, although she has been small and a bit uncoordinated. Due to that, and a few other things, we had begun looking into the possibility that she might have a mitochondrial cytosis (a genetic defect of the little pieces of your cells that use nutrients and create energy) but no tests were conclusive and the docs all said "there's no way she could have survived a bone marrow transplant with a mito disease." But it seems to be settling out that Kate does have a form of mitochondrial cystosis called Kearns Sayre Syndrome, which normally is diagnosed in the early teens, and the life expectancy is in the mid 20s. No one understands the hows or whys, but it seems that her mitochondria just quit working, and the fact that they can't work has damaged her brain and will possibly progress to other organs.
We love her and she has loved us, and we will continue to care for her and love her as long as we have her. We are excited about the improvements that she has made since her illness this summer, but we do spend a lot of time in therapy, giving medications, and caring for her needs. .
Thanks to you all for your faithful prayers, Lesley

If you read some of her other journal entries, you will quickly see what an incredible battle this family and this little girl are fighting. Not just physically, but also financially. The Burnettes attend Aldersgate Methodist Church and their older son Wen is a student at Holy Spirit. Lesley and Kate have spoken publically about Kate’s illness and have even been featured on WAFF 48. This family has impacted many lives here in Huntsville and in Hampton Cove.
We would like to host a "party" on the back lawn of the Hampton House on October 4th to benefit Kate. Charity Jam 2008-Eat, Jump, Jam and Play……All for Katie May will kick off at 6:30 am that day with a Garage Sale along the sidewalk on Mill Run Road to coincide with the community garage sale. We will provide, (for a charge), hot chocolate, coffee and doughnuts during the early morning hours of the sale and then around lunch time hot dog meals. We will have inflatables and games for the kids. Beginning at 10:00 am we will have live band entertainment. Several Praise Bands from area churches will jam on into the early afternoon. We will have donation jars available and charge only for the food. We will have a Power Point going with photos of Kate and her family and their story, we hope that they may even be able to come out and celebrate the day with us. Boy Scout Troop number 757 has offered to help direct traffic.
We hope to give the folks here in Hampton Cove, who might not otherwise have ever heard about Kate, a chance to meet her and her family and put a face with someone who desperately needs our help. Our hope is that this would turn into a huge neighborhood block party and that Hampton Cove residents would come out in force and help out this family and have a great time in the process.
Thank you for your time. If you have any questions about the fundraiser or about Kate, please don't hesitate to call me at 533-3244 or email ktsquare@bellsouth.net. We welcome any volunteers who would like to help on this project and donations can be made payable to the “Burnette Family Fund” and dropped off at any Redstone Federal Credit Union branch. We hope to see you all on October 4th.
Please visit Kate's webpage at http://www.caringbridge.org/al/katiemay/index.htm.

If you wish to make a donation, you can do it to The Burnette Family Fund at Redstone Federal Credit Union
220 Wynn Drive
Huntsville, AL 35893
(256) 837-6110
Toll Free: (800) 234-1234
www.redfcu.org


Thank you again and have a wonderful day,
Glenn and Karen Tillery, Reggie and Sherri Spivey, Sam and Heather Givhan, Vic and Tammy McCarn,

Monday, September 15, 2008 8:57 AM CDT

Hi! I know I'm way late making an update, but our internet is down at home and I couldn't do it at home and I'm really busy at work making the world safe (Ha!). I promise to do an update soon.

Kate got a bike Saturday and rode it a bit and we have been busy doing homework for school. She has her first spelling test on Thursday and I expect she'll make an A.

One very sad thing I have to pass on, however, is that Haley Callahan passed away. Some of you may have followed her link from this website and may be following her story. She was having a bone marrow transplant for DBA in South Carolina, and her lungs, liver, and kidneys failed, due to graft vs. host or veno-occlusive liver disease, or both, I'm not positive which. Kate flirted with both of those problems during her transplant. Please remember her family in your prayers.

Blessings, Lesley

Sunday, September 7, 2008 9:24 PM CDT

Hi1 9:30 on Sunday night! I'm going to go fast, and then attach some information about a fundraiser that some dear people in our community are putting on for our benefit. I will get some new pictures up sometime this week.

Kate has had a FANTASTIC week. She STOOD UP by herself on Thursday. We were at Wen's soccer game, she was sitting in the grass and had been playing with some girls, and we heard "Mom!" and looked over and she was standing up! She was too far from us for us to catch her but fortunately someone else was.

She is speaking very well, and using complete sentences.

She started homebound school this week, with two one-hour sessions with a teacher. She also had a tutor come and we work with her. I hope that when (I'm talking in whens not, not ifs!) she goes back to school, she will be on an academic par with the rest of her class.

Kate hasn't had any insulin since Thursday morning also. Her glucose levels have been a fudge high but also rather low sometimes. We have been allowing her to try to eat more, and so not giving her quite as much formula so that she can have the opportunity to eat. We've put her on the pump at night to get in a full 8 ounces of formula.

She has, unfortunately, thrown up almost every day.

Kate went to Sunday School and youth group today and spent the night at her grandparent's.

She walked, in her walker, from our house to our neighbor's house, across the street and down a couple of houses. She was very proud of herself and so were we.

I've been hanging pictures and so have a mess layed out all upstairs, so I'm off, but please read below about a fundraiser planned for our benefit on Saturday, October 4th. We are very humbled to be chosen by this group as their focus of mission, and ask and pray that you will all support them in their endeavor and that God would bless their efforts. We continue to be surprised and overwhelmed by the generosity people have shown us. Somethings are very small, but still kind and tender gestures, and some things have been so large we, shamefully, cannot imagine ourselves being so generous and so are overwhelmed by other's generosity. Thank you all.

I started a new Bible study today (whoopie! I am so glad!) and between that and today's sermon I have been reminded again about the power of the Holy Spirit to work in our lives so that we can love others in the way that God intends us to. We have seen so much of this power channeled for our benefit, and thank God and thank you and ask all of you to pray for each other as you pray for us. Pray specifically that Kate would find her appetite, and find a variety of healthy foods appetizing (biscuits and waffles won't cut it). Pray that her glucose levels will be steady and normal. Pray for her schooling, that her teachers will challenge her and that she will be determined to learn. Pray for us, that we find time for rest and exercise and don't feel too awfully hectic. Pray for Wen, that we recognize and meet his needs. He is a precious boy and you cannot possibly imagine anyone to be a better brother than he is.

Blessings, Lesley

ps I realized that I keep forgetting to tell you all that we did get the DNA results back and they do show "a DNA deletion consistent with Kearns Sayre Syndrome" and they will be doing some more testing on that same sample to pin down exactly where the defect in the DNA is.


Here's the information about the fundraiser:

Hello All,
I want to share with you a wonderful opportunity that our Life Group has found out about to truly be a blessing to a family here in Huntsville. There is a 7 year old little girl named KatieMay Burnette who lives here in Huntsville. Kate, as she is called, was born with an extremely rare type of anemia called Diamond Blackfan Anemia and has also recently been diagnosed with a second and even more debilitating disease called Kearns Sayre Syndrome. I will attach an excerpt from her Caring Bridge webpage that is written and updated by her mother Lesley on a daily basis:

Kate just turned 7. She was born with Diamond Blackfan Anemia (she didn't make red blood cells) and had a bone marrow transplant when she was 2. It was very successful and she has lived a very normal life since then, although she has been small and a bit uncoordinated. Due to that, and a few other things, we had begun looking into the possibility that she might have a mitochondrial cytosis (a genetic defect of the little pieces of your cells that use nutrients and create energy) but no tests were conclusive and the docs all said "there's no way she could have survived a bone marrow transplant with a mito disease." But it seems to be settling out that Kate does have a form of mitochondrial cystosis called Kearns Sayre Syndrome, which normally is diagnosed in the early teens, and the life expectancy is in the mid 20s. No one understands the hows or whys, but it seems that her mitochondria just quit working, and the fact that they can't work has damaged her brain and will possibly progress to other organs.
We love her and she has loved us, and we will continue to care for her and love her as long as we have her. We are excited about the improvements that she has made since her illness this summer, but we do spend a lot of time in therapy, giving medications, and caring for her needs. .
Thanks to you all for your faithful prayers, Lesley

If you read some of her other journal entries, you will quickly see what an incredible battle this family and this little girl are fighting. Not just physically, but also financially. The Burnettes attend Aldersgate Methodist Church and their older son Wen is a student at Holy Spirit. Lesley and Kate have spoken publically about Kate’s illness and have even been featured on WAFF 48. This family has impacted many lives here in Huntsville and in Hampton Cove.
We would like to host a "party" on the back lawn of the Hampton House on October 4th to benefit Kate. Charity Jam 2008-Eat, Jump, Jam and Play……All for Katie May will kick off at 6:30 am that day with a Garage Sale along the sidewalk on Mill Run Road to coincide with the community garage sale. We will provide, (for a charge), hot chocolate, coffee and doughnuts during the early morning hours of the sale and then around lunch time hot dog meals. We will have inflatables and games for the kids. Beginning at 10:00 am we will have live band entertainment. Several Praise Bands from area churches will jam on into the early afternoon. We will have donation jars available and charge only for the food. We will have a Power Point going with photos of Kate and her family and their story, we hope that they may even be able to come out and celebrate the day with us. Boy Scout Troop number 757 has offered to help direct traffic.
We hope to give the folks here in Hampton Cove, who might not otherwise have ever heard about Kate, a chance to meet her and her family and put a face with someone who desperately needs our help. Our hope is that this would turn into a huge neighborhood block party and that Hampton Cove residents would come out in force and help out this family and have a great time in the process.
Thank you for your time. If you have any questions about the fundraiser or about Kate, please don't hesitate to call me at 533-3244 or email ktsquare@bellsouth.net. We welcome any volunteers who would like to help on this project and donations can be made payable to the “Burnette Family Fund” and dropped off at any Redstone Federal Credit Union branch. We hope to see you all on October 4th.
Please visit Kate's webpage at http://www.caringbridge.org/al/katiemay/index.htm.

If you wish to make a donation, you can do it to The Burnette Family Fund at Redstone Federal Credit Union
220 Wynn Drive
Huntsville, AL 35893
(256) 837-6110
Toll Free: (800) 234-1234


Thank you again and have a wonderful day,
Glenn and Karen Tillery, Reggie and Sherri Spivey, Sam and Heather Givhan, Vic and Tammy McCarn,

Monday, September 1, 2008 8:27 PM CDT

Hi everyone,

Yeah, yeah, I know, where have I been and why haven't I been updating? It's just so hard to find any spare time at all, so I'm trying to keep mental notes of the week to update you as I can. I'm going to go quickly as I'm going to bed as soon as I'm done! Too much labor on this Labor Day.

Kate's had a great week. I think sometimes that her speech is much improved, particularly in the mornings. In the evenings it's slower and more spare. In the mornings I get full sentences and it sounds clearer. She went to youth group at church last Sunday for movie night and enjoyed pizza with her friends. This Sunday morning she was clingier, and Darryl had to stay in SS with her.

Kate got a new walker at therapy and she uses it a little every day. It's tiring to her, so she doesn't go much. She got a new wheelchair Tuesday and it's PINK and it has the name HANNAH embroidered on it so of course it's a HANNAH MONTANA wheelchair. Whoo Hoo!!! I have to force her to take the stroller or sit in some other chair when I just don't want to get the wheelchair out, she loves it so much. This week in therapy she sat up from laying down all by herself, and was very proud. She has been crawling on the sofas, which is good as it uses her right arm.

Kate has several toys she likes to play with. Most of them are toddler toys, shape sorters and ring towers and such, but she likes them because they challenge her. She has some pop beads that she likes (those big ones made for toddlers that have a hole in one end and snap together) and she uses both hands to get them put together, then she plays a game she made up called "Throw and go get 'em." She never wants to take a turn at "go get 'em."

Three of her friends came over Saturday and we all walked across the road to the movies. Four girls, three drinks, 4 candies, 1 popcorn, 1 wheelchair, and wanting to sit in the top row = disaster. Fortunately no one was hurt and we all enjoyed the movie. We saw Wall-E, which Kate was supposed to have gone to see with all her friends for her birthday.

Kate's tutor is coming twice a week, and we are doing worksheets and reading with her, as are her grandparents and Aunt Vickie. This week Darryl and I will have a meeting with the special ed teacher and coordinator and the homebound teacher, and hopefully that will get things started with the homebound teacher visits. Kate just works so much better for other people than for us, and all the schooling help we can get is good for all of us. All of the people we have come into contact with in the school system have been very kind and accomodating, if a bit thrown off by our situation and diagnosis. Keep them and us in your prayers, that Kate will love her teacher, that he would challenge her, and that she would respond with the determination she has always shown towards school.

Kate still gets very tired, and needs naps during the day. We wore her out completely last night by going to the FAIR! Kate rode the teacups and the ferris wheel (3x) and the slides (2x). I got to carry her up all the slide stairs both times! She played the fishing game and won better prizes than the other kids. We came home with a lot of stuffed animals. One of the carnival workers jumped out of his booth and ran over to give her a stuffed animal. She ate nachos and drank Dr. Pepper and generally had a very good time, as we all did. She had to take 2 naps today.

She's going to Gibson's every day and eating an egg and a biscuit top with gravy with either coffee milk or tea. Other than that, she doesn't eat much, just the occasional bowl of Sugar Pops. We still feed her formula and she is gaining weight. She does still throw up occasionally, usually when we have fed her too much or too fast, but it's not very consistent, but fortunately also not too awfully common.

When we came home from the hospital, Kate was on 8 units of insulin every day, and sometime her sugar got really high even then. I have dropped her dose THREE times this week and she is now on just 2 teensy units a day and her sugars are holding quite normal to not too low. I'm going to fax her glucose level in tomorrow and let the endocrinologist tell me whether to stop it or not. I'm happy to play doctor for a while, but I know my limits. Thank you for all your prayers in this area. I feel very confident that God will answer our prayers that her pancreas heal and she no longer will be insulin dependent. I'm certain we will still need to check her glucose regularly but not to have to give her a shot daily will be wonderful for us all.

We've been doing a bit of home improvements, and some projects that should have been done a long time ago but we were "indisposed" this summer. We have washed the porch rails and ceiling and floor and the deck and Darryl put sealer on them today. Wen and I have completely cleaned out his bedroom and now I can call the painters and order him a new desk and my 13 year old will no longer have to sleep in his room all decorated as it was when we brought him home from the hospital. Of course, my bedroom is now full of boxes of things to give away because I can't move them to the garage because it's full of boxes of stuff from Kate's playroom and we still haven't made it to the garage cleanup task. I cleaned out my den bookcases and then cleaned out my wardrobe in preparation to have it moved to an antique shop tomorrow to be sold on consignment. Darryl and I have spent hours today rewiring all our A/V equipment. You'd think an engineer and a mathemetician could snap that out. Probably the start of a "how many engineers and mathemeticians does it take..." joke. I have spray painted the hinges on the cabinets and bought new pulls to go on them, so once our new TV gets here, and our new couch, it will be a very pleasant den. We've resisted the new TV because of all the changes it would require, and also because we rarely ever sit home, but now our lives are significantly different and we find ourselves home in front of the TV. Last time that happened was probably just before Wen started playing soccer at age 4.

Oh, Kate also goes to the potty all the time now too. Quite nice for all of us.

Please continue to pray for Kate's insulin dependence to go away. Pray for her fine motor skills to improve, particularly in her right arm/hand. Pray for her strength to improve, both overall and in her legs. Pray for her to work hard and do well in school and for the health of all her caregivers. Thank you all for your kinds words, cards, thoughts, and prayers, they sustain us and encourage us and they definately help!

I put some new pictures in the photos page.

Blessings, Lesley

Monday, August 25, 2008 4:27 PM CDT

Hi,

We’ve had a lot of fun this week. When asked her age, Kate kept holding up six fingers. She didn’t realize she was seven because she didn’t have a birthday. So we decided to have a very tiny party for her on Friday night. It ended up being no so tiny, and I still haven’t got all the gifts put away! I think we now own every item Hannah Montana ever thought about putting her name and/or picture on. One of Kate’s friends told her that she too was 7, but Kate, remembering that Emily’s birthday is after hers, said “Uh-uh, I’m not seven yet.” Maybe Emily will need another party too. Kate also had an impromptu birthday party at Gibson’s for breakfast Friday, and collected a goodly sum of money and had both birthday cake and coconut pie to go with her egg and biscuit/gravy.

I was worried that Kate would be upset that she couldn’t play with her friends too, but we carried her wheelchair out into the yard and she laughed while she watched her friends play, and reached out with her arms to pull the hammock back and forth and dump her friends out. It was so good to see her laughing. I’ve put some pictures on the website.

I was also worried that her friends would be wierd with her, but she has seen several of them, and they've all be great. They have played with her, accomodated to what she found fun, made her pictures and gifts, and been happy to see her.

We have been doing some worksheets and other things to see how much she’s retained from Kindergarten, and she seems to be right on, given that she hasn’t had any practice at reading for two months. I am supposed to have a meeting with the special ed homebound department this week, please be praying that that happens quickly. Kate needs to be doing schoolwork.

We all went to church together yesterday. Kate said she wanted to stay in the sanctuary (she said that big word!) and as soon as I got it all settled she said “go to Sunday School” (our church service is during SS and usually D and I go to church while the kids go to SS and they get a church service during school – Wen gets two!) and so we trucked her off to her class with 9 boys. Last night she went back for youth group, and ate about 2/3 a piece of pizza, and stayed awake for the movie (it was movie night).

Kate is working hard with her hands, although her right one is still hard to use. I made her use it on the computer, so she laid it up on the keyboard and used her left hand to push down her right fingers. Very Kate-like. She is working with pop beads, blocks, sorting, clay, etc. She can walk if you hold her body up, so I’m hoping that when we next go to PT they’ll be able to give her a device to allow her to move around on her own. She can sit up for very short periods without help, although her posture is awful (her back is rounded into a C). She does sit up very nice and straight with some support.

Kate currently loves her wheelchair and wants to take it everywhere rather than the stroller, so my back is feeling it, but it does lift her up to table height.

We’ve managed to get to Gibson’s every day since Thursday for breakfast, although I feel like a nap once I get there. I worked every day last week, not full days, but I did make it. So we seem to be finding a workable schedule, with the help of all the good people who are bringing us meals and running our errands.

Please continue to pray for Kate’s physical recovery: for her speech to become quicker and more coherent, for strength in her core and legs, and for her right arm/hand to gain mobility. Kate is now on half the dose of insulin she was on when we got home and her blood sugars have been very steady. They will suddenly get low for a day and I'll decrease the insulin, and they'll restabilize. Keep the prayers coming!

I have a large oak wardrobe that I need to sell/get rid of. It has been modified on the inside by a carpenter with solid oak shelves, drawers, pull-outs, and cubbies for electronics and storage. We are getting a new TV and have to have a smaller, lower cabinet which I've already bought and it's on its way. I've put a picture of it on the photo page. It's very very heavy, so don't plan on taking it up very many steps.

Thanks, Lesley

Thursday, August 21, 2008 12:40 AM CDT

Hi, just a quick update. Here's what Kate has done since yesterday:

-Ate pieces of ham, cheese, and crackers.
-Sat at the the dinner table with us.
-Asked to and enjoyed sitting in her wheelchair.
-Smiled and talked to her friends, and played and drew/painted with them.
-Counted to 10 and said her ABCs (alternating with me) and read words in speech therapy.
-Went to Gibson's and at about 2/3 of a fried egg and a goodly bit of biscuits and gravy.
-Asked to sit in her wheelchair and play games on the computer.
-Used the bathroom (whoo hoo!)
-Stands (briefly) with support to have her pants put on.
-Walked (with major support) short distances.

Tuesday was a bit of a letdown after Monday, but Kate was so tired - she didn't sleep at all Monday night because she was so excited! But we all got a good night's sleep on Tuesday and so yesterday and today she's had some good days.

She doesn't remember anything about the hospital, and when you ask her how old she is, she says 6. So we are having a tiny little birthday party for her tomorrow, and she has ordered Hannah Montana decorations (I spent $70 on them!!!) and a white cake with purple icing.

Many of the gifts people sent in the hospital weren't things she could play with, but I have saved them all and we are going through them and she's enjoying them, particularly the Hannah Montana headset/radio (thanks Katelyn!) and all the art/drawing things. We all freaked out and have overloaded her with paints, colors, blocks, and other therapy-recommended toys, filling the house back up and forgetting that the garage is full of her packed up toys from what used to be her playroom but is now her downstairs bedroom.

Re. school - when I walked in to the school on Tuesday morning, they called the special ed teacher and she said "Oh, we were just talking about you yesterday." We went to private school last year, but had her evaluated for special ed at the public school in case the private school wasn't going to be appropriate (but she did great). The teacher has been following her website, and the other teacher is one of my long-time childhood friends! Prayers answered! The teacher already had an IEP (individualized education program) started when I returned yesterday, and hopefully we'll get that completed soon. It involves a lot of setting goals for what she should learn, which is difficult because a. I'm not a teacher so I don't know what she's supposed to learn when, and b. I don't know what all she can still do or not do!

Her blood sugars tracked at the very lowest end of normal yesterday. If they stay that way, they'll reduce her insulin yet again, so keep on praying!

Thanks for everything. It was great fun to get out today and see folks at Gibson's, but mostly it was fun to watch Kate's little spark light up when she worked hard at therapy and was successful. I can't wait to see her this afternoon.

God bless you all!

Monday, August 18, 2008 10:06 PM CDT

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen. Ephesians 3:20-21

Wow!!

Kate slept ALL weekend long, night and day, until last night when she had such a bad night. She ran a fever, whined “Dad” constantly, made him sleep with her, woke up constantly looking at her poor toe where she’d last been stuck for a glucose check and whining. I thought she might have been constipated, and finally we gave her Ativan and hoped she’d sleep.

This morning when I woke her up she was still clingy and whiney, and I debated about going into work. Since I had only planned to go for a couple of hours, I asked if she’d like to go to Aunt Vickie’s (our neighbor who is keeping her) and she said yes, so I took her. I left her laying in their bed and went off to work. When I came back to pick her up, she was laying on the couch watching TV. Vickie said she had opened her mouth and started talking. She said TV, movie, Hannah Montana (!), hungry (!), cereal, pops (these are her favorite that she gets only at Vickie’s, Sugar Corn Pops). She petted the dog, who she refused to even look at before.

I told her I had some pops, and we’d go home and eat them (they were only 3 months old and in a bag that got left open) and then go to therapy (OT). She cried “No therapy!” and when I started to take her in our house she said “Aunt Vickie!” and when we left for therapy she said “go home”. She at FOUR BITES of POPS!!!! Then she said “bed.” Unfortunately there was quite a bit of trauma surrounding the glucose check, and after she finally picked her thumb to do it, she was very upset every time she saw her thumb, even though it had a Backyardigans bandaid on it. She was so upset about it she said “medicine” (I have suggested to her in the past that she could take the ativan by mouth b/c it would make her feel so much better). I hated to give her ativan just before therapy, so I decided to just give her Tylenol, but was out of that (another neighbor kindly ran out to get it for me), so I just gave her her regularly scheduled meds and that seemed to satisfy her! I asked her if she’d like it in her mouth or the tube and she said “tube.”

I had a discussion with her about the value of therapy to her life (basically I said if you want to go over to Abby and Emily’s house you’ll need to do good in therapy) and she was a total trooper at therapy. The first thing they did was “fingerpaint” on a standing easel using baby lotion. But Kate could see her bandaged thumb doing that and it was too upsetting. So the therapist showed her two pictures of different activities and she picked the ones she wanted. She picked to play in the rice and beans, and picked animals out of a box of rice/beans and handed them to the therapist, then picked them up off the table using verbal clues (“the brown cow”) and handed them. Then she picked to play with blocks, and the therapist showed her drawings of simple shapes with colored blocks, and Kate selected the right color block and placed it on the easel in the right order, even stacking one block. She said red, blue, green, purple, and choo choo. Then she made the blocks move like a train using both hands. Then Kate picked up each block one at a time and put them into a small cup. This was a major major major advancement. Last week in therapy she rolled over. Listen – one week ago she learned to roll over, this week she is picking up small objects by verbal clues and releasing them into a cup. She was working so intently to get her hand over the cup that one time she didn’t even notice she had dropped the block way back.

We also went to pick up Wen at school and several of his friends who dote on her came to the car and hugged her and said Hi, and she hugged them and waved and smiled, the first smile I’ve seen since June 21st. We made over her very big and she was very proud of herself and Wen was also quite emotional about it. We celebrated with a trip to Baskin Robbins, and brought home bubble gum ice cream and Kate ate a lot of it, until I made her quit (ice cream and Sugar Pops are not really appropriate treats for a diabetic, but her blood sugar is OK anyway). I didn’t mean to let her get any bubble gum pieces, but she did get one piece, and she just chewed and chewed on it and then swallowed it, although I tried to get her to spit it out. Swallowing is a fear, and she hasn’t handled thin liquids well yet. After I fed her she also seemed in pain and I asked her what hurt and she said “tummy.”

Kate is picking up her head and upper chest. Just a bit ago, she was sitting in her beanbag (she said “beanbag”) and I was teasing her, asking her what she had eaten (tuna? Brussel sprouts?) and finally Dad said “bubble gum?” and I said “Nah, you had ice cream, not bubble gum” and dang blasted if she didn’t pick herself up into a completely sitting, nearly leaning forward position, and smiled a big smile and said “One!” (one piece) and looked exactly like our wonderful Katie May, Holy Spirit’s Most Determined Kindergartener. I was so excited I laughed and it totally crushed her and she cried.

Now, if that’s not enough, before I started to feed her her “snack” (she is given larger feedings at 7am, 1pm, and 7pm with blood sugar checks before each, and smaller feedings at 10am, 4pm, and 10pm with no check) and she said “Are you going to check my blood sugar?” I figured out the “Are you going to” after three repeats, and finally she just held up her thumb and I got it. We had to have a talk about diabetes and what that means and that she has to have a check four times a day, and I showed her the picture of her friend at the ballpark who has diabetes. She cried a bit and then seemed to go on with it.

Darryl is wandering around flummoxed saying “It’s like night and day” and “it’s freaking crazy” and he’s right. Maybe all that sleeping over the weekend was healing, and all the itching over the weekend was her brain rewiring, and the bad night last night just the last gasp of it. I saw her pediatrician tonight and she said “Aw, doctors don’t know anything.”

We’ve had visits from several excited grandparents and her teacher, who marched in past the grandparents and made Kate say her name (a good Lithuanian name, so Kate is definitely getting the wiring together).

So we are very excited, very thrilled. I am going to register Kate for school tomorrow, and hope that she will be able to receive some services in our home. We are excited to see her personality and to see her be able to communicate her needs and wishes and to eat with us. It does not change her diagnosis, or the likely course of her disease, but if even if she doesn’t improve any more past this, we count this as a great gift and answer to your many prayers. And of course we have learned to moderate our emotions, having been disappointed in such severe ways.

Hey, why don’t we just go on ahead and pray for her diabetes to be cured. Why not? If she’s going to ask to eat ice cream and Pops, then we’re going to need the diabetes taken care of.

Oh, and I also forgot to mention that she has stayed awake ALL DAY today, not sleeping until about 4:30 or 5pm. We woke her up about 8:30 and she’s just now starting to get sleepy again (9:30). Hopefully she’ll sleep all night.

She has said these words while I was typing this update:
I want glasses.
Down
Bear

So, please pray for the diabetes, for her not to itch so much anymore, for her tummy not to hurt, and for her continued improvements in communication and movement. Also, she has some funky red swelling around her GI button which might be granulo-something skin, which would have to be lasered off. I’d rather not deal with that. Also pray for our dealings with the school system, that we get the services we need in an efficient and speedy way.

I have put a picture on the website from Saturday, of Kate with her great grandmother (how many people have a g-grand who can get down on the floor to visit with them after coming and cooking their parents fried chicken livers, fried chicken, fried potatoes, fried corn, fried okra and tomatoes, and field peas?) and then a picture of Kate from today, sitting in her purple chair eating ice cream, and a picture I just took a bit ago of Darryl and Wen painting her nails with glow in the dark polish. You can see the difference yourself!

Thank you all so much for your love and support and encouragement and prayers. Please keep it up, it sustains us and renews our strength as we hope in the Lord.

OK, I could not even get the post onto the website before Kate said “chair” and then “color” and is now sitting upright in her purple chair with a desk in front of her coloring with markers. She wants a blue marker and there isn’t one so Darryl has gone to the store. I woke Wen up to come see. It’s only 10pm. OK, now she has said “Blocks” and I threw all her little blocks on the table and she’s picking them up and putting them in a bottle. I have got to get this out before she stands up and starts tap dancing. Praise be!!

Am I getting it across? At 7am she could not lift up her body, sit upright, talk, eat, anything, and right now my baby is sitting upright drawing on paper and picking up little blocks!!

Now she said cross, santa, lipstick, tinkerbell. She's pulling little items out of rice/beans; she's very excited to show everyone what she learned at therapy today. She's as thrilled as we are.

Sunday, August 17, 2008 2:38 PM CDT

Hi,

We’ve had a full week, part of why I haven’t done an update. I know somewhere on the caringbridge site there's a way you can sign up to get an email notification when the page is updated. Then you won't have to check it only to be disappointed! I'm glad everyone enjoys it so much.

Wednesday day, my neighbor came over to babysit Kate while I went to work for a few hours. That afternoon, another kind friend came over to stay with Kate, but since I was waiting on the new washer and dryer to be delivered, I couldn’t leave. So I haven’t been to the gym all week, but I do have a lovely new washer and dryer and am so thankful for it as we’ve been doing laundry non-stop it seems.

Thursday I also went to work, I think (if my memory serves) and Kate went over to my neighbor’s. My precious neighbor has a handicapped son herself, and loves Kate as her own, and will be keeping her two days a week for me. My mom will keep her two days, and my dad the other weekday, plus all the nights and weekends we’ll be calling him for (he lives in town, my mom lives about 1.5 hours away). I also went to work on Friday and I have totally enjoyed it.

Hmm. I think of stuff to say when I can’t sleep at night, and then when I sit to write I can’t think of a thing.

Kate has been throwing up a lot more. There always seems to be something precipitating it: a larger amount of food, sinus drainage, thrashing/being upset during the feeding. Wednesday night I went to Bunco and while I was gone Kate threw up in the bed so much that Darryl and Wen had to take off not only all the sheets, but the mattress pad, mattress cover, and the dust ruffle. Friday night when we finally had it all washed and were putting it back on, I bet Darryl that she’d throw up again in it. And she did. When she throws up it comes up so fast and it comes out her mouth and both nostrils. Yuk. The worst thing is that it gets in her hair and she has to have a bath, which is never pleasant. A couple of times this week Darryl has taken her in the shower with him. It’s not any less traumatic on her, but definitely saves by back from leaning over in the tub.

We took her Friday night to our family’s hair stylist, and she washed and cut Kate’s hair short. It was just getting too traumatic on Kate to try to brush out the rats’ nests in the back of her hair every day. So far it seems to work. It’s not too short, like a bob, not a boy cut.

Kate has been sleeping quite a lot lately, and we try to keep her in her downstairs bed if we can’t get her to sit in her chair or beanbag. She points to the ceiling and wants to sleep upstairs all the time. Yesterday afternoon I took her up to let her have a nap, but when we got there, she pointed at the window and covered her eyes, showing that the light was too bright (her room’s window faces the west). So down again. I would like her to be awake more often, and to sit up more often, so that she is comfortable like that and could go places with us. This morning her teacher came to stay with her while we went to church (Karrie goes on Saturday nights), and Kate didn’t want us to leave. Karrie asked her if she wanted to go with us, and she said yes. She’ll have to be much better at sitting quietly in a wheelchair or stroller in order to do that.

I do believe that Kate is less sensitive than she was, that her brain is leaning to process sensory input better. She does still cry when you move her, but not as much, and tolerates touching better. Noises will still startle her, but she’s not always so upset when you are talking in her room. She is moving her right arm more, and last night I saw her try to scoop up her little stuffed dog Kipper to get him under her chin (with her left). She points with her left hand, but doesn’t grasp things. She tries to scratch herself when she itches, but gets frustrated. She can rub her eyes and nose. Thankfully Kate has regained her champion-level nose blowing abilities. Now if only Wen could learn them. Kate seems to have full functionality in her legs, and moves them as she wishes. She can move her head as she wants, and is supporting it much better. The problem seems to be in her truck/arms. She can roll over and over, but struggles to scoot herself up in the bed and needs help.

She has expanded her vocabulary. Every morning she has a major itching session and we scratch and scratch her tummy and sides and no matter how hard we scratch she says “hawda” (harder). I got her to finally say Dad, and the same day she said Nana (my grandmother, who was coming to visit her). Today she is calling “Dad”, which is a nice switch from “mamamamama” which is her generic word for “something’s wrong.” She uses several non-verbal clues, such as hitting and biting when she’s angry, and she does this shivering movement when she’s cold, and she points a lot. Wen went to kiss her goodbye Thursday morning and she hit him. I had to fuss at her about it, and she gave him an “I’m sorry” look and let him kiss her. Friday morning she reached out her arm and put it around Darryl and then Wen’s neck for a hug. She will also purse up her lips and kiss. But through it all, it’s totally Kate’s personality as she only deigns to kiss, hug, or talk if she wants to.

I believe that she is fully aware and her mind works just as before, but she just cannot make her body work as she wants it to. When I ask her to try to say a word, I can see her working to try to get it to come out of her mouth, and sometimes it does and sometimes it doesn’t. The more she can communicate, the less frustrated she (and we) will be. Unfortunately she doesn’t enjoy therapy at all, so she screams all the time, or it could be a real help to her.

Her blood sugars have been very consistent, so that’s a real blessing. She has not been interested in eating at all.

Thank you to everyone who has drawn up meds, brought meals, run errands, sent us cards and notes and email and money. I promise that I am trying to find more tasks to add to the website for you to do. I don’t buy all I need so I can have something to give someone to do (someone brought us 12 cases of Diet Coke – they make a fortress in our garage). I have heard that a church in town is planning a fund raiser on Labor Day, but I won’t give any details until I’m certain that will happen. Everyone has been very good to us and we are very blessed to know how many friends we have and how good they are. Today at church the band played one of Kate’s favorite songs, “God is Good”. The lyrics continue “… all the time. He put a song of love in this heart of mine.” I thought that God is good to us, that He has put a song of love into our hearts so that we are able to find blessings in this time. If we did not know Him, would the bitterness and anger not consume us? We feel those things too, but they share space with the song. The minister mentioned us today as examples of faithfulness, but I am reminded that our church has a lot of families with handicapped or disabled children, with grown children with mental retardation, with families who have lost a member and they too are witness of God’s faithfulness and abiding love and are rarely recognized for it because they haven’t had a recent crisis and don’t have a webpage. Please lift them up and encourage them, or anyone you know in that situation.

Please continue to pray for our friends the Quinteros.

God bless you all, He is good, all the time.
Lesley

Friday, August 15, 2008 11:44 AM CDT

Hi! Yes I know an update is overdue, I'm trying! It's been busy, rather more vomitting and subsequent clothes washing than I care for, but I will get an update done today or tomorrow.

I think I've figured out the photo thing. You can go to www.lesleyburnette.shutterfly.com and see photos now.

Also, if you want to signup to bring meals or run errands, you send an email to beppielever@earthlink.net.

So, that's three websites of ours to keep up with, sorry. Wouldn't it be great if Caring Bridge added the sort of features that lotsahelpinghands.com has?

Blessings, Lesley

Tuesday, August 12, 2008 5:42 PM CDT

Hi everyone, thank you so much for your prayers for our trip to Birmingham today, it went very well. Kate slept or at least sat quietly all the way down, and insisted on wearing the headphones for the DVD player (Dad drove us and his car has a DVD player), even when it was the second season of Lost playing rather than The Pacifier. When we started to pull off on 4th Avenue she said, out loud "Where are we going." It took 3 times and mostly I could only get the "where" but she said it. This morning she also said "cover" - she was pointing at the foot of the bed, but I thought she was pointing at the table. I think she got frustrated with me going over every single item on the table and decided to take matters into hand herself.

Kate also waved goodbye to the doctor today.

She was very calm inside the hospital, but was bothered by the noise of babies crying (all the clinics surround an open waiting area, so it's noisy). Here's a gift of grace - the sink in our exam room was stopped up, and maintenance got there when we were in the room. I told them that noise would bother her, so they got the doctor in quickly to get us out quickly. I'm not going to spend too much time dwelling on how much more important getting maintenance in and out on time is than patients, I'm just thankful for getting out of the hospital in 40 minutes.

On the way home, Kate never cried until we got on Airport Road. She's been fussy since we got home, but Darryl got her settled in her bedroom upstairs and she's resting well.

I had to pack two cans of formula, a syringe and feeding tube, Ativan and mylicon, water to flush, wipes, diapers, a pad to lay on, pillow and blanket, DVDs, sunglasses and glasses, a sweater, a change of clothes, and a book for me. I forgot her 1:00 meds! I fed her a couple of ounces laying in the car on the top level of the parking garage, but other than that didn't have to feed, medicate, or change diapers until we got home.

I talked to the Metabolic doctor yesterday, and the DNA test results show a deletion in the mitochondrial DNA, consistent with Kearns Sayre Syndrome. Again, the doctor said she just can't understand how Kate could have a successful bone marrow transplant. Does she know my God? Just think what the last 5 years would be like with weekly blood draws, monthly (or more) transfusions, nightly hook-ups to the desferal pump, and deteriorating health due to graft vs. host and iron overload from the transfusions. What grace this has been to be so healthy for the last 5 years.

I'm sure I have lots more to write, but the stomach rules, and it's dinner time.

Please be praying for our friends the Quinteros. Marisol and her husband Juan have a son Kate's age with DBA (he is transfusion dependent and their daughter is not a match) and Juan is in the hospital on a ventilator in the final stages of ALS (Lou Gerhig's disease). They are dear and brave people, and we have enjoyed knowing them via the DBA newsgroup and finally met them at camp last year. Darryl often says "It could be worse" and I know he is thinking of Marisol and Juan.

God bless you, be praying for Kate's GI system, we are going to work with the metabolic nutritionist to find some solution that will allow her to have some more normal "activities" in that area.

Lesley

ps. I'll mention again for new folks, if you want to help out with errands, meals, etc. you can email beppielever@earthlink.net and she will get you signed up to the www.lotsahelpinghands.com website. Thanks!

Sunday, August 10, 2008 2:48 PM CDT

Hi, time flies! First off, I know that you can't get to the shutterfly link to see our pictures, but I don't have time right now to figure that out - I'll add it to the list (near the bottom!).

We've had a couple of difficult days. Thursday Kate had low low blood sugar all day, and generally felt bad. I took her to speech pathology, and she cried through the whole thing. She did get interested in one computer website that would play a simulated piano when you hit a keyboard key, but that didn't last long. The therapist will be helping us find ways to help Kate communicate with us.

I did find that Kate will watch DVDs on our travel DVD player, which I placed on top of a clothes detergent box on the table by her downstairs bed. I think the other TVs were just too far away for her to either see or hold interest in. Watching DVDs has given her some entertainment and perhaps kept her up a little bit more during the day.

Friday Kate slept a good bit, and a friend came over to stay with her while I went to the gym, and with another kind friend they filled up all her medicines for the week. In the afternoon I went to work for a couple of hours. That day was so beautiful, and when I got home I put Kate in the wheelchair and we went for a short walk around our circle. I couldn't say she enjoyed it, but she didn't protest too awful much.

Friday night she slept all night, thank to a full dose of Ativan at bedtime. I have to admit, though, that I didnt' really feel any more rested when I woke up than usual!

Saturday, again, she didn't feel good and had low blood sugar. Darryl called the endocrinologist and they reduced her insulin again. She is sleeping today mostly non-stop, and is whiney when she's awake.

My 3 college roommates came to town Saturday, and we visited and went to dinner and I spent the night with them at a hotel and had a fun little break. We have a great time when we get together as we are the funniest people we know. I don't understand why other people don't think we are that funny.

Somewhere in there I also went to my 25th college reunion for a bit.

My in-laws came up yesterday and stayed with Darryl while I was out and Faye cooked us a giant lunch. It's amazing I can even type now.

I did go to Target today and bought Kate a stroller. I think the wheelchair is uncomfortable to her, and it's awfully heavy for me. If she will fit in this stroller I think she will be more comfortable.

Kate has appointments at Children's on Tuesday, and I'm thinking about how awful it's going to be to have her out of bed all day long. Lately the bed and the beanbag chair are the only places she wants to be. She doesn't like to be held. So, please pray for her comfort. I'll be taking the Ativan for certain.

Forgot to say that Kate's two best buddies, Abby and Emily, came by yesterday and saw her, and Kate smiled the tiniest little bit at the corners of her mouth. She was high on Ativan at the time.

Everyone I have seen everywhere in the last few days, from our reunion to Target today, knows about Kate and has been praying for us. We appreciate it so much and crave that support.

Please pray this week for our trip to Birmingham on Tuesday (safety and comfort and good communication with doctors), for Kate's glucose levels (to be normal and stable), and for Kate to tolerate her therapies and improve her communication abilities.

Thank you all, may God bless you and provide for you as He is for us. Lesley

Thursday, August 7, 2008 7:23 AM CDT

Hi. It's been a jam packed couple of days.

I spent about 6 hours Tuesday morning collecting and copying all the information we were told to get for Kate's SSI interview, and filled out this form online that took 2 hours to fill out, then I couldn't print it. I was falling over exhausted by the time I was done. The phone interview with Social Security yesterday consisted of giving our names, SSNs, and incomes. That's IT. We'll be receiving our denial letter in the mail. Hopefully all that work will be used for the other medicaid waiver applications. There are only 399 people ahead of Kate on the list for medicaid wavers. Hopefully the SSI denial will move her up. We have taken the opportunity of the Education Savings Accounts, where you can put $2000 a year in an ESA account and use it, tax free, for ALL education expenses, from K through college, including living expenses, gas, etc. Unfortunately, providing for your child's education (so they can get a good job and pay more taxes) means they have assets and therefore get no help from the government in a situation like this, when you could really use it. Better I suppose we should have taken all our money and plowed it into a bad mortgage on a house we could never afford, leaving our children to take out student loans to pay for school (which they could later just default on), then we could get some help. Oooh, sour grapes!

Then Tuesday afternoon Kate and I went for her occupational therapy appointment. Her OT gave me some suggestions for things that could help her deal with her sensory issues. I think the best way I can explain it is that Kate's brain just doesn't process information about sensations, from food going in her stomach to where her body is when she's being moved. This makes her cry, so whenever we move her, feed her, frequently when we talk to her, she cries. When she first woke up in ICU she cried all the time, but her brain is "rewiring" to be able to handle sensory input, and she's been steadily improving. So we are going to do things like swing and wear tight fitting clothes/wraps (this would make her feel secure and more aware of her body) and stick her hands in stuff to feel.

Tuesday night I fixed Darryl a good Southern birthday dinner, all from our organic Community Supported Agriculture box (and a few green tomatoes from my backyard, which are, by virtue of being neglected, organic also). See www.doerunfarmtn.com. Fried okra with green tomatoes, fried squash and onions, creamed corn, sweet pickles my Nana made, and sliced tomatoes. Yum Yum.

Then later I fed Kate and went outside and swang with her. Then when I brought her in she immediately threw up all over Darryl. Happy Birthday Dad.

Yesterday morning I got her all bathed and shampooed and dressed and lovely, then fed her. She threw up so much it came out of her nose too. So another bath for Kate. The rest of the morning yesterday is a blur, but we did go to physical therapy yesterday. They lent me a little seat on a base that rolls so she can sit more comfortably than the wheelchair and still roll around the house. And that lets me leave the wheelchair in the car. I'm getting better at it, but that wheelchair is an unfun way to learn patience: standing outside in the heat taking apart a wheelchair to put in the car, then driving 5 minutes to stand in the heat and take it out and put it together.

We stopped at the dr.'s office yesterday to draw some blood for labs to see if we can't reduce some of the medicines that Kate is on. She's taking magnesium, bicarb, sodium, and calcium because all these levels got low in the hospital. Hopefully, since she's getting regular food now, she doesn't need them.

Today Kate has a speech pathology appointment. I'd like to see if we can't find some ways for her to communicate more with us. She has started pointing some, which is an ackward flinging motion with her left arm (she can't move her right arm much at all), pointer finger extended. I've been putting up two choices in front of her to encourage her to do that, or asking her which direction she wants to turn.

Kate was getting really high glucose numbers at bedtime, so we've had to add another shot of fast acting insulin to her list of sticks for the day (6 total now, and that's if I get the blood on the first stick, not the third like this morning).

Wen started back so school yesterday, and I admit to a good little cry in the morning because Kate was not going back. She, of course, did not want to go to 1st grade (too hard!) so she's probably glad to stay home. I kept thinking of the first day of school last year when I woke up to her standing by my bed waaay before time to get up, holding her uniform and saying "Help me get this on!" She loved school and loved her friends and her teachers and all of Wen's friends (the 6th graders were "buddies" with the Ks, plus Kate has been a regular in Wen's classrooms whenever I volunteered). And they loved her too.

Please pray for these things:
-complete and continuous nights of sleep
-level blood sugars - no wild swings of highs and lows
-that she'll keep all her food down and not throw up
-that we'll find a solution to ugly diapers (maybe a formula change?)
-that we find time and energy for OT/PT/SP exercises and that Kate benefit from them

Thank you all for your love and support. Many people wonder where God is when their lives are hard, but we know that God is working to minister to us through you all. Thank you for allowing God to use you as His hands and feet in our lives. Last night I went to Home Depot and bought a new washer and dryer (whoo hoo!) and got the better model for the same price due to an advertising error. The lady said "You are one lucky person!" I said "If you knew my life you wouldn't say that" and ever since then I have regretted that. Bad stuff happens to everyone, but I am very blessed to have the upbringing, the spiritual training, the marriage, the family, and the great cloud of witnesses around me to make me able to live with joy, through great sadness, anyway.

Lesley

Monday, August 4, 2008 3:54 PM CDT

Hi,

Well I did get the food today, but perhaps I should have asked for prayers for me to get the formula in a way that did not involve lots of stressful phone calling and frantic driving. I arrived home with a case with a whopping 30 minutes to spare. I'll spare you the details.

We've had a fairly calm couple of days. Saturday night I took my first venture out with Kate, to my Dad's. She just slept in their bed while I ate.

Sunday morning I went to church (Wen when to the lake with friends on Saturday) and was really touched by the message given by one of our youths. He talked about how, as your faith matures, you can move from focusing on questioning God to answering God's questions with "Yes" as you change your focus from yourself to a mission-mindset. It helped me view taking care of Kate as a mission to her.

Sunday night our neighbor sat with Kate and Darryl and I went out to eat. We saw several friends and one of the family's bought us dinner. We pretty much just cried all through dinner, who knows what the poor waitress thought!

Kate had her wheelchair fitted today, Dad was here (I went to WORK!) and he said she screamed through part of it, but was quiet for some of it. She has been asleep since I got home at 12:30, so I haven't put her in it.

I did go to work, for just a few hours, but I really enjoyed it. I didn't really do any work, but I did get caught up on all the happenings.

I put a couple of new pictures on the photo page.

Gotta run, Lesley

ps I'm trying out a new way to share pictures, see if you can go here:
http://lesleyburnette.site.shutterfly.com/

Saturday, August 2, 2008 8:53 AM CDT

Hi, sorry for not posting yesterday, but I was exhausted, it was a wild day. We had lots of folks in and out, and they were all extremely helpful, but it left me expended. Fortunately, Darryl and I just sat all afternoon while Kate slept off the ativan I gave her for her wheelchair appt.

The boys got home about 1pm yesterday. They finished EIGHTH out of 98 teams! Whoo Hoo! Yippee!! What a fantastic week they had, and I am so happy that Darryl went and that nothing happened here that made him regret that decision. Thank you for your prayers on that. Wen came home with a huge towel covered with pins from other teams, a custom-carved bat, hats, shirts, etc. etc. The boys lost their morning game Thursday morning, but in order to win the tournament, they would have had to win 4 games that day, the final one at 9:15pm. As it is, they got to do some fun things and have a giant spend the night party Thursday night (although they had to get up at like 2am to drive to Albany and get their flight).

Of course, all that fun disappeared when Wen realized school starts Wednesday and he's not halfway through his required reading book.

Kate has had a fairly smooth couple of days. She wakes up about 12:30 or so each night, and I have been giving her a little ativan to get her back to sleep. But yesterday I had given her some about 1:00pm, so she slept until that evening, then had a terrible fussy time, for about 1.5 hours. Welcome home Dad! Finally we gave her some ativan (I was trying to hold off on it to save it for the night) and she calmed down. She did sleep almost all night, with one wakeup at 12:30 for a change and I held her in the bed a little until she got sleepy again. I think that when I asked her if she wanted me to hold her, she tried to say "hold", or at least made an "h" sound.

Also she said "no" yesterday when Wen asked her if he could kiss her on the cheek. But she only did it that one time.

The wheelchair "fitting" turned out to just be a "Here's your wheelchair, sorry it's missing a footrest, call this guy to fix it next week." I'm very disappointed because I wanted to have that chair to use this weekend. But the custom fitting people are coming to my neighbor's Monday morning, so she got them to come here afterwards.

We had some lovely help this week. I generally don't mention people's names on the website, but we had someone come and pull up all of Kate's medicines for the whole next week - 98 doses total, plus I draw her insulin shot each day. Having that done and sorted makes it so much easier for me - I grab a cup of meds at the beginning of the day and pull out a baggie for each time needed. Also a good friend from NC came by and I met her at the door with a list of bathrooms to be cleaned and sheets to be changed (a REAL good friend). People dropped by with food (my refrigerator is STUFFED and overflowing), friends from church made dinner in record time (thanks!), I have a bag of money to repay people for errands, another couple of church friends went to the license department and got our handicap tags (is that the BEST thing ever - to find someone to go to the DMV for you?) and also shopping and bought my brother's birthday present, curtains I'd been wanting (I bought one, so I have one red curtain and 3 old brown ones - now I have a complete set), and some other things I needed for Wen. And of course all three sets of Kate's grandparents have been here, been run ragged, and sent home to sleep. So you see, I have no problem asking for help.

I have setup times and jobs on the www.lotsahelpinghands.com website, and I'm still messing with it, so if I change something you've signed up for, please forgive me! As we try out these things I'm finding I need to make some changes. If you want to help out through that website, please email beppielever@earthlink.com.

I have some slots on there for "skilled diabetic care", and I wanted to explain that a bit. These times wouldn't be times anyone needed to give medications or glucose checks or any other sort of thing, but since Kate is diabetic now, they would have to be able to recognize signs of low blood sugar and feel comfortable treating that (I could teach you). I would like to be able to go to the gym during that time, and you could of course always call me. I expect I will have grandparents of one sort or another here most of the weekdays, but I thought if I could find a couple of reliable folks to sit with Kate, that would give us all some flexibility. You would need to be able to pick Kate up and move her (she weighs 30 pounds and can be floppy, so you need to be secure with that, and also moving her up and down from a low position in the bean bag chair) and change diapers. If you didn't feel comfortable with that, I'm sure I could find some work around the house to do and if she needed moving, I could do it.

In short order it will be time to find some regular care situations for Kate so that I can go back to work. Darryl and I can work our schedules to overlap so that we are only gone about 5 hours a day. Please be praying that God will provide exactly what we need to care for Kate.

Also, here's a quick prayer I need for this weekend: I've just realized I only have enough formula for today and tomorrow. Please pray that I'll find a source for this formula before I run out (it's delivered from a home health care place, maybe they can get here Monday a.m.)

I hope everyone has a great weekend. Unless something interesting happens, I think I won't post again until Monday. Keep us in your prayers for full nights of sleep, regular diapers, and glucose levels that don't vary wildly.

God Bless You, Lesley

Thursday, July 31, 2008 5:56 PM CDT

Hi,

We are settling in quiet well, today feels easier than yesterday. I actually went to the gym! I did one set of 15 leg presses, 15 push-ups, and 15 situps and went home. But I did walk there and back, so that counts! Except I was "forced" to eat one of Babs' delicious recipe experiments so the net calories expended wasn't in the right column.

Kate had a bit of a bumpy night. Everything went perfectly for the 9pm feeding, then she slept so nicely until about 11:45, then screamed for quiet a while. I took her glucose to be certain it wasn't that (it was 137) and finally just gave her 1/2 a dose of Ativan and she slept perfectly the whole rest of the night. When I checked her glucose at 2am it had dropped all the way to 86 or so, so I had to feed her to get it back up. Wierd how it can drop so quickly, but then when I checked it again at 7am it was still just under 90.

I'm thinking maybe she's sleeping so much during the day that she's more awake at night and wanting some attention. I've been trying to mess with her as much as I can today to keep her more awake, but at the moment she's asleep in her pink princess room. Sam the puppy came to visit her today, and she liked looking at him but not having him lick her. My neighbor also brought me a communication board thingy, that has large buttons you can push to say different things. I recorded "yes, no, leave me alone, put me in the bed, put me in the bean bag, my tummy hurts" for her and played a bit with it with her, but I don't think she has the motor skills in her arms/hands to use it. Maybe when we start some therapy it could happen. It would help!

Lovely people from church made us a delicious dinner last night in record time (thanks!) and tonight we are having another delicious dinner made by my neighbor. I sent out a list of things that I needed bought/done, so I promise I am trying to get as much help as possible. I'm hoping that the Lotsa Hands website will help for that. I have asked for help with meals two nights a week (we get a farm box each week and with leftovers I think 2 nights is enough for now), errands 2x/week, addressing thank you notes, pulling up and sorting her meds daily, and weekday times of respite when I could go to the gym. My family is large and very helpful, but I would like to find people who can help outside that group also. If you would like to help, please email your info to beppielever@earthlink.net. There will be things that can be done one time (like the cards or running errands) and things that you could commit to doing regularly if you wish. What a great idea, isn't the Internet wonderful?

We continue to receive cards, gift cards, checks, and more from people we know and love and from people we don't know and still love. I am so blessed to be the recipient of such a flood of generosity and selflessness. It makes a HUGE difference to us. It gives me courage because I don't want to let you down, and gives me hope because I feel like there are so many people I can count on no matter what happens.

Please pray for us to fall into a quick routine, for Kate to sleep peacefully each night, for her blood sugars to always be within acceptible levels, and for everyone who has helped us through their words and actions and prayers to be blessed.

One funny thing is that I'm finding all these great connections: my Dad's hair guys knows my neighbor; my dear church sister's first cousin goes to the same church (Pulaski St. CoC in Leoma or is it Lawrenceburg?) as my great-aunt, etc. etc.

Big deal for tomorrow: wheel chair fitting at 1pm. Lots of prayers for smooth running of our first excursion.

Blessings and prayers for a full night of sleep,
Lesley

Wednesday, July 30, 2008 4:38 PM CDT

Hi.

Kate said "Mama" two times today. It's good to think that she might be able to communicate her needs and wishes to us. It's hard to have to face the idea that she may comprehend her situation.

She had a good night last night, although she threw up right after I fed her and put her in bed. Lesson learned: Don't feed then move. This time I'll feed her while she's in the bed. She slept from 10:30 or so until 2am, when I had to check her glucose and I knew I'd have to feed her a little b/c her glucose would be down from throwing up. After that, she cried out about once an hour, but once I made it into her room, she didn't need or want anything. Finally about 6:15 she woke up crying a lot, and my mother in law took her downstairs and rocked her.

Other than that, she's mostly been sleeping all day. I did give her a bath in our big whirpool tub, using a shower sprayer attached to the sink faucet. Dad spent about 2 days finding and fixing that up for us.

The hospice nurse came today and had her first visit. As I can understand it, we aren't "really" entered into hospice, but they are coordinating her care and evaluating her. If she plateaus and maintains her current state, who knows what will happen. It's impossible to predict. But our insurance only pays for 6 months of hospice, so we don't actually enter full hospice care until we think need that. What I can figure that means is that while hospice will order supplies and what not for us, we actually have to have the companies bill us directly and we pay the co-pays and deductibles. If you are "in" hospice, then the insurance pays only hospice and you don't worry about it.

When I got home, there was a giant stack of cards and notes, and I was really lifted up by reading them. Someone from church called to see if they could do anything and I said "Could you bring me dinner tonight?" and they are! Thank you all so much for your offers to help, for the money and gift cards you send, and for all the well-wishes and thoughts. If I forget to thank any of you, it just slipped through the cracks, I am trying to keep up with it! I have enjoyed being able to reconnect with friends and family and to meet new people through this situation.

Re. helping. The website I mentioned the other day is www.lotsahelpinghands.com. I put in where I need help (meals, errands, etc.) and people can sign up for those things. In order to sign up, though, you have to have your email address entered into the website for my page. If you would like to participate that way, then please email my friend Beppie Lever at beppielever@earthlink.net and she will set you up. I haven't looked at the site yet, but it has stuff like meals, running errands or shopping, coming and sitting with Kate (if you know how to care for a diabetic), and I sure I will add more stuff. I am keeping a list of errands I need, such as picking up prescriptions, and grocery/store stuff.

I also wanted to point out to everyone re. the vacation time donated at Sparta that I have only been there since January, and my group is very small. I know relatively few people. The 529 hours weren't donated because I'm so popular (but I will be ;) ) but rather because the good people of Sparta are generous and loving and I'm so blessed to work there. I have been praying for a long while now for the "perfect job" and I do believe I found it. Thank you all, again.

I can't think of anything else to say. I'm just wading through the bills and papers and other accumulated piles of stuff that appears when you have been away from home for a month.

Oh, the Argonauts are STILL undefeated! WHOOO HOOOO!!!! I watched bits of their game this morning on the webcam and they have another tonight at 7pm CDT. Google the Cooperstown Dream Field, then go to the Dream TV button, then Selected Games, then Field 4. They are in the TOP TEN out of 98 teams and I am just so happy that Darryl is there.

Keep praying for Kate's stomach to adjust to her all-liquid diet, for her to sleep through the night, and for her to become less sensitive to stimulation so that we can talk to her, dress her, move her, etc. less traumatically.

Thanks, Lesley

Tuesday, July 29, 2008 7:51 PM CDT

We're home, and tired. Got home about 3:30 and met the pump and formula man, then the hospice folks. I have tried to clear out a bit of space and get her medicine schedule figured out (hospital had stuff at midnight and 2am, so I just decided to make me a new schedule!).

My dear friends completely remade Kate's playroom into the prettiest bedroom, with a beautiful bedspread, table, and lamp. In pink, of course. They also fixed up her bedroom and got us all sorts of supplies and equipment we'll need, then fixed us a delicious dinner.

I'll write more later, just too tired now.

Thanks, Lesley

Monday, July 28, 2008 4:28 PM CDT

Hi,

We are still planning on going home tomorrow, so keep that in your prayers. I’ve talked to all her doctors, the therapists, social workers, nutritionist, hospice, and insurance company today and I think we are ready. Except that I have to finish the diabetes care training.

Kate had a good night last night, although her tummy is still not really happy. Hopefully some time and some fiber added to her formula will help.

The metabolic doctor discontinued most of her supplements, so I think that will be better for her tummy.

The therapist brought me a bath chair, kinda of like a big bouncy seat made with mesh, so if I can find a good time for Kate I’m going to try to give her a bath.

I know everyone is eager to help out, and one of my friends found a website where you can “register” to help in various ways, so she’s going to set that up, and I will let you know about that.

I know also that many of you will want to visit, and I will enjoy seeing you and catching up. However, Kate veeeerrrry much does NOT like to be talked to or touched, and does not like it if there is a lot of commotion, noise, or talking around her. Therefore, I need to limit the visitors that we have at one time and also arrange them according to what is best for our schedule (which I will first need to establish!). And after I’ve had a shower for the day. So, I ask if you would kindly call ahead and let me schedule you for a visit. That’s pretty regimented I know, but until we all get used to being at home, I think that is what will be best for Kate.

Hospice arranges our supplies and prescriptions and equipment, and will meet us at home when we get there and help us get all ready. I think tomorrow will be a very tiring day of setting up and training and arranging. Fortunately some kind friends cleaned out Kate’s playroom as a daytime bedroom for her, and the maid came last week just before the boys left, so we’ll have a nice clean and ready home to come back to. My in-laws will stay with me one night, my mom one night, and my dad one night, then Darryl will be home and we’ll get to have a weekend together before we have to figure out what to do next week. Ah! School starts back that week!

The Argonauts won their third game this morning and are playing right now. They are ranked 14th out of 98 teams. Very exciting. I’m so glad that Darryl went.

I repeat myself, but I’m so pleased with everyone’s posts and cards and well-wishes. Your love and support lifts us up and keeps us going. Please pray that we will get home safely tomorrow and that all our needs will be met in the coming week before we even know we need them.

Blessings, Lesley

Ps I just got an email that says I had 529 hours donated at Sparta. As eloquent as you all say I am, there is no way whatsoever that I could ever express what that means to me. It is the gift of time, which all the songs say you can’t give. What would you give for 529 hours with your child? It’s priceless to me, and I thank every single one of you from the bottom of my heart. God bless you all, and I pray that your lovingkindness will be returned to you multiplied over and over again, and that I will one day have the opportunity to be as generous as you all have been.

Sunday, July 27, 2008 6:42 PM CDT

Not much to say today. I bathed Kate and the nurse and I washed her hair. She has slept or rested most of the day, but I plan to get her up this evening and maybe take a wheelchair ride around the floor. If I keep her up more maybe she’ll sleep more at night. She cried a good bit from 11-12:30 last night, I think from stomach problems, but maybe she just didn’t want to be in the bed. It’s hard to tell what she wants, but yesterday she shook her head no and today she shook her head yes, so that will help. Of course, that is all dependent on if she feels like communicating or not.

I put her glasses on her, and I think that made her more willing to watch TV and look at people. But not much.

Today her GI button got clogged up with the CoQ10 medicine, the same one we’ve had so many problems with, so I have decided not to give her any more of that. A surgeon had to come and run a wire through it to unclog it.

The Huntsville Argonauts won their first Cooperstown game big and are about to start their second one. I was proud to have seen Reuben Stoddard yesterday, but when I talked to Darryl, Darryl had seen Pete Rose and Yogi Berra and a bunch of other people that are famous to baseball but not to me.

The idea is still to go home on Tuesday morning. I will have a very full day tomorrow seeing all the doctors, therapists, nutritionist, and social worker one last time and get all my questions answered, plus working with Hospice to get home ready. The doctors offered up Monday to go home, but I can’t imagine being ready or getting home at a decent time.

Taking care of Kate is going to be a lot of work, with carefully timed injections, glucose monitoring, feedings, and a silly amount (volume and quantity) of supplements, given literally around the clock. There will be equipment to learn and stuff in the house to rearrange and organize. It will be like bringing home a new baby. You can prepare as best you know how, but a lot of it just involves time.

Please pray for Kate’s tummy to be settled with her new feeding regime, for good and complete communication with all the medical specialists tomorrow. Pray for us to quickly learn Kate’s ways of communicating.

Blessings, Lesley

Saturday, July 26, 2008 7:25 PM CDT

Having internet issues and can only type slooooowly, so quick update. Most exciting thing that happened today: saw Rueben Studdard (American Idol winner) at lunch.

Kate OK, bit of tummy trouble adjusting to new formula feeding schedule and amounts. Should be OK.

Love Lesley

Friday, July 25, 2008 5:00 PM CDT

Afternoon,

It feels like a busy day, but I can't say I did much. I did go out to lunch with an old friend, and go to Walgreens to get Kate more glucose testing supplies. Her glucose has continued to rise, so the endocrinologist believes that she is slowly becoming diabetic due to the mito disease, and wants to give correction factor insulin when her glucose is high (over 200) until we start having to give correction factor 3x a day, then go to the daily 24-hour insulin (personally I'd rather have a 1x/day shot than 3x/day). In any case, I love the new monitor as the sticks are very tiny and it only needs a tiny bit of blood.

A surgeon came and took out the stitches holding in her GI button, and then someone else came and taught me how to use it and clean it. You have to rotate it around everyday and it's so eeeewwwww to think you are rotating around a little knob and balloon going through your child's abdominal wall and into their stomach. It's easy to use though.

PT came and messed with her pretty good, and we had a check of how she'll do in her carseat. We need to rig up some head support and she's good to go. Mike James, if you have any advice please send it. She needs something that holds her head upright - like maybe rolled towels on each side.

I fed Kate some pudding today, which she seemed to like for a couple of bites only, then I gave her some graham cracker. She ate some of that, then when she decided she'd had enough, she opened her mouth really wide to breath in, clamped her lips shut, and puffed out her cheeks in the classic "I'm not eating it" face that Kate is well known for. It was precious. Then when OT came, they fed her more pudding, which she liked for a while, then she made the same move. So now she has learned to communicate to us that she doesn't want to eat anymore.

Right now she is relaxing in a red bean bag chair sitting up on top of her bed and is sleeping. I think she spent a good bit of last night awake but quiet, so she's slept a lot today.

Don't know of any other news (the boys got to NY safely), please keep us in your thoughts and prayers,
Lesley

Thursday, July 24, 2008 8:32 PM CDT

Whew! I'm tired and dehydrated, but all is well. A very hectic day.

Darryl and Wen came down today, and we were looking forward to being all together, but then they decided Kate needed calcium and magnesium, and she had to be on a monitor for that, and you can only be monitored in ICU, Special Care, and Stem Cell, so off to Special Care we go. The calcium runs for a hour, then after that the magnesium runs for 4. Then you take labs and wait for the results. The results were that the calcium was still a bit low, and the doctor gave me the option of just going back to the room (they kindly held it for us) and starting the feeds back and waiting for it to come back up, but I preferred to go ahead and spend another hour (plus the 45 minutes it took to get the stuff up from pharmacy) doing another calcium infusion. In the middle of all that we had family visiting and we went to eat lunch and we also met with the nutritionist and did her diabetes eduction. It was a loooong day.

I did enjoy the time from 4:30 until now that I've spent with her. The physical therapist had her sitting upright (holding her) when I got there. I had a nice talk with the chaplain who baptised her that long ago Friday morning, and I held Kate for a while. But that also meant 4 hours with nothing to eat or drink and I'm parched! I've finally re-hydrated and gotten my appetite back from the ICU. My brother brought me dinner and I'm enjoying tabouli and falafal. What a treat to live within such proximity of such a variety of foods.

One little possible bit of good news is that since Kate has not had insulin in 2 days and yet has kept her glucose levels normal, she might not be insulin dependent. This would make life easier - not testing 4x/day and giving Kateshots. One little hitch - the metabolic doc made the mito diagnosis based on the diabetes fact. If she doesn't have diabetes, can she still be certain it's mito (which it is)? What else will she want to prove it and is it something we're willing to do? That doctor is off at camp this week, we will see her on Monday.

I did get a new glucose monitor that just makes a teeny tiny stick in her finger and now she doesn't bleed profusely when we stick her. I stuck Darryl with it and he said he didn't feel it.

I've also talked with the hospice people today and started thinking about what needs to be done - mostly doing more research and thinking more. I sent a friend off today with a gift card and a list of items we'll want at home next week. Just you wait, there will be plenty for you to do too!

It's eat or type, and I'm hungry.

Pray for us to get up to speed on feeding with the GI button quickly, for Kate to continue to be successful without insulin, for safe travel and play for Wen and Darryl on their big trip, and for nothing drastic to happen while they are gone. And for all the arrangements and applications etc. etc. for getting settled at home happen smoothly and quickly.

Blessings, Lesley

Thursday, July 24, 2008 8:43 AM CDT

Morning. Kate had a very calm night, even though she still hasn't had anything but fluids. She can start on clear fluids today and maybe food later.

But, because she's been off her feeds, all her blood chemistry numbers are off and they need to give her a calcium infusion. They have to have her on a heart monitor when they do that, and they don't allow monitoring on the floors (except stem cell), so she will have to go to Special Care (step-down from ICU) while they do that. It will be a short trip and we'll be back in the room soon.

The lower levels of stuff in her blood has made her a bit lethargic and a little shaky.

I'll try to update again later this afternoon when maybe I'll have more to report. Darryl and Wen are coming down this morning, it will be good to see them again.

Lesley

Wednesday, July 23, 2008 5:08 PM CDT

Kate made it through surgery fine and seems to be resting pretty well with just Tylenol suppositories. Your prayers availed much, she slept all morning and they did the surgery early - about 12:30.

She will just rest for the rest of the day and tomorrow we'll try out the new tube.

Surprisingly, her glucose numbers have been steady and normal for two days, including the fasting time.

Blessings, Lesley

Wednesday, July 23, 2008 9:11 AM CDT

Morning. Kate's surgery is scheduled for 2pm. She has been fasting since midnight, although she has fluids running in her IV. Please pray that the surgery will happen early and that she will rest and not be upset b/c of hunger until that time. And of course for a successful outcome.

I'll update later this evening. I changed the pictures in the photo album with some photos Mom had on her camera.

Blessings, Lesley

Tuesday, July 22, 2008 11:23 AM CDT

Hi, we have had a pleasant yesterday afternoon and morning so far.

Kate was very calm all day yesterday, save one little spat yesterday late afternoon. Last night she suddenly threw up and threw up her feeding tube with it. Nasty! There was tube going in her nose and out her mouth. The nurse grabbed the tube and pulled it all out through her nose. EEEEeeww. But afterwards she was just as calm and peaceful as she could be, and the attendant washed her hair without her making a move. Kate seemed to really like the beauty parlor treatment. But then they had to put the nose tube back in. I noticed since then she coughs a bit and is less settled. So I think the tube bothers her throat and gags her a bit.

They are going to put the GI button in tomorrow. I don't know the exact time, they haven't told us. Of course she's NPO (no food) after midnight - you are always NPO at midnight no matter what time your surgery is. We had discussed before also doing an MRI, but her team has decided it's not necessary since the metabolic doc made the diagnosis. The surgeons discussed doing a fundoplication (sp) which is a sort of band/valve that prevent her from throwing up. Her doctor team doesn't think that's worth the extra complications, and we can always go back and do it later on if it's necessary, so I believe they will not do that.

We have chosen our hospice (Hospice Family Care) and expect them to contact us very soon and get us started on what we need to do to bring her home. Barring unforseen complications, we should be going home early next week.

Kate got fussy this morning and kept opening her mouth and turning it towards whatever was close, several times getting her fingers up in her mouth and biting on them (until she realized they were fingers). So I got some graham crackers and she ate about 1/4 of a square, with a few drops of milk from a straw. That seemed to satisfy her and she's resting again.

All our DBA friends are getting back from Camp Sunshine in Maine and sending us well wishes and letting us know they thought about us and talked about us. We sure did miss being there. But it reminds me that there are people everywhere dealing with similar and worse situations. One of our DBA friends has a son Kate's age who is transfusion dependent (meaning weekly dr. blood draws and monthly all-day transfusions and nightly chelation pumps or medication) and her husband is deteriorating rapidly with ALS (Lou Gerhig's disease).

It may be pharasiacal to favorably compare yourself to others, but seeing other people in worse shape than yourself can give you courage and conviction that you can deal with your own problems, since they are dealing with theirs. Those of you who are our friends who have been caring for your special needs children for many years have given us such good examples of uncomplaining, unfailing devotion, acceptance, and love, and have cleared the road on which we now travel. You are our neighbors and friends and fellow church members. Thank you and God bless you, your life has made a difference in ours.

Many of you have written me and said you don't know how we do it, or that I am doing it so well, but I will let you in on a secret about this and all blogs: you only read what I write - sometimes I write what I want I wish I felt, or what my head tells me that my heart hasn't quite taken hold of yet. But as I tell Wen all the time, the best way to change your attitude is to go ahead and act the way you want to feel. I'm ministering to myself! Here's the other thing - if you are a half-way decent parent then the fact is that you just do what you have to do. The strength is there, you step up to the plate when it's your turn to bat. Maybe you strike out, maybe you hit a home run, but you are there (a little more baseball analogy for all you folks heading to Cooperstown). We have seen everyone in our family step up, deal with it, and move on to do what has to be done.

Re. the why do bad things happen to good people question. I know many of you have children who are asking that. I'll give you my take on it if it helps you at all. First off, none of us truly good. We are all fallen sinners standing before the throne of a Holy God, in need of forgiveness and grace. To compare ourselves to others and say we are "good" when they are "bad" is to cut ourselves slack and excuse ourselves and therefore to decide that we are somehow OK because others are not (which is the "judge not..." thingy). Secondly, bad things just happen, and they happen to everyone. That is life. We certainly saw that in the ICU waiting room!! Life is what it is, and sometimes we are lulled into a sense of security and ease and entitlement because of the great blessings and prosperity that has blessed us to this point. This hospital, all other hospitals around the world, your neighbors homes, and homes all over the world, are full of people suffering and dying. It's just life, and life ain't fair. It's actually God's grace that we DON'T get what we deserve.

Back to my blog secret: this hasn't stopped either Darryl or me from asking "why us" and "what have we done" but it's helpful to remind ourselves that in our less emotional moments we have these beliefs to fall back on. They do not come from our emotions, they come from the core of our beings and define who we are. How do people who have no faith make it through such times? As my friend Bob says (hi Bob!) "How can they keep from running, screaming, through the night?"

Well I have waxed quite poetic today, now you know what happens when I have time on my hands! Get back to work, all of you (especially at Sparta and Torch).

God bless us all, Lesley

Monday, July 21, 2008 12:16 AM CDT

Hi, we have had a quiet weekend. I went home and Darryl stayed with Kate (hence, no update). Today Kate is resting very quietly, and this is the last day of her methadone. She fussed a little about midnight, and fusses when someone moves her or messes with her, but otherwise lays in the bed or sits in her chair and sleeps. She hasn't even opened her eyes very much, but she does relax her legs, which she had been holding so stiffly. She also moves her tongue around a lot more, something very evident when the OT came today - but Kate did bite and eat a bit of graham cracker and sucked water out of a straw (but spit it back out).

We plan to do the GI button for her feeding as soon as they can schedule it. After that surgery, then the goals will be to set up a feeding schedule and insulin dosage/schedule that works and once that's all stable we will go home. Kate had problems over the weekend with her crushed and not-very-dissolved vitamins clogged up her tube and they replaced it 3x. We finally just asked them to discontinue the vitamins.

The only other thing that's a little off is that her pancreas numbers have bumped up. They'll check it again, it may or may not matter.

The palliative care doctors came by, and they'll get back with us after the button and help us with learning that, and they have recommended hospices. Once we pick that then they will start helping us get together what we need to go home. Also her insurance case manager should come by so we can go over what insurance we have remaining for Kate and what it will cover.

It's nice and quiet in our room, and I slept hard in the few hours I did sleep between Kate's scheduled tests and meds. I will enjoy some quiet time to get caught up a tiny bit on my emails and work and reading.

Please pray for the surgery to go well - that Kate will be intibated and extibated without problems. Pray for them to find her a wheelchair that fits her that we can take home, that her insulin/glucose will level out so they can reduce the number of times they have to test her each day. Also, Darryl has been planning for a very long time to take Wen, along with a whole team of boys and their dads, to Cooperstown, NY to play baseball at the Dream Field. They have tickets to leave on Friday. I so much want Darryl to go and to have fun and to enjoy watching Wen play. Please pray that nothing will interfere with that trip. Praying that he will go without too much worrying is perhaps not realistic!

Blessings, Lesley

Sunday, July 20, 2008 11:32 AM CDT

Good morning, Just wanted to provide a quick update. As everyone may know I have spent the weekend here with Kate and Les went home (that is why only the single update). Anyway, no big events this weekend... Kate is in a room now and the doctors continue work on getting her ready to go home. I have been able to hold her several times this weekend which helps a lot... Not much else other than please continue to keep us in your thoughts and prayers as we as a family learn to care for Kate.

Darryl

Friday, July 18, 2008 5:00 PM CDT

Hi, sorry for the late update, but there's just been no time today. When I came in this morning Kate was sitting up in her wheelchair with her physical therapist, then I held her for a while, then I went with her to her Upper GI thingamabop which was fine, then I meet with the palliative care doctors then they moved her to a room (yeah!) and here we are.

The palliative care doctors are a UAB team of doctors that help people care for a patient, managing symptoms and coordinating therapies to help the patient and their families maintain the best possible life they can. They will be helping us get home and taking care of us then. We will be also working with a hospice group in Huntsville, don't know which one, and they will provide nursing care and plenty else but I don't know what all yet.

The occupational therapist came today, and we are trying to evaluate how much Kate will be able to take by mouth before we decide for certain to do the GI button. The OT tried some ice chips, and Kate fought and struggled against getting anything put into her mouth, but once it was in there, she immediately stopped fighting and just started chewing and swallowed. By the third piece she opened her mouth for the spoon but then she decided that was it for the day.

Funny how excited you can get about your 7 year old chewing up a piece of ice!

So we will enjoy being a room now and having some quieter, calmer surroundings. Please continue your prayers for us, we appreciate them all.

Thanks, Lesley

Thursday, July 17, 2008 4:46 PM CDT

Hi, quick update. The doctors came by while Tiff and I were out to lunch and changed a bunch of stuff (discontinued her pain meds!) including saying she could go to any room in the hospital, but I talked to a doctor on her team and asked him if we couldn't wait for a room in a particular wing of the hospital which has large rooms, and he agreed. We were next on the list for a room, but now we may not get one today. It will absolutely be worth the wait as we will still be here for a couple more weeks at least.

OT also came while we were gone and put Kate into a little red padded wheelchair. The nurse said she really didn't like it at first, but eventually settled in a little bit, and they will keep working on it. Also they put a popsicle in her mouth and she hated it! They tried something else, and she did better. For 3 weeks plus, everything that's gone in her mouth has been unpleasant, so maybe this will improve with practice. Kate won't ever be able to eat enough orally to support herself, but it would be good if she could eat or drink some things.

She has been extremely calm all day, and I asked the nurse if she would talk to the doctors about reducing her methadone and atavan a bit more. Turns out the dose was the smallest measurable bit, so they just cut it all off scheduled, and said to just give it as needed. I think that's a bit extreme, so the doctor agreed to continue the methodadone on schedule and give the atavan as needed. I plan to give her the atavan just before the therapists come so she can be relaxed for that. But I think she needs to be as awake as possible so she can adjust herself to her situation and not be irritated by it.

OK, that wasn't all that quick.

Thanks everyone for the lovely posts and your love. Darin, loved the baseball analogy. How appropriate for a 2 Time City Champion T-Ball player from her coach!

Lesley

Thursday, July 17, 2008 12:42 AM CDT

Hi. We still haven't moved out of ICU because the hospital is full and there are no empty beds. But we expect to move today. They have transferred Kate's care to what they call the "Gold Team", which is a team of doctors that will coordinate her care.

Kate was a bit fussy when my sister and I got here this morning, but calmed down at 9:15, just in time for her OT session. She did well but didn't ever bend her right leg.

I held her from then until just a bit ago, and she has been relaxed and relaxed her joints.

Kate threw up before we got here, but I think we have realized that they are giving her way too many CCs of medicines and crushed pills dissolved in water at one time. I've asked the doctors to discontinue the absolutely unnecessary ones (the metabolic doc said she'd giver her vitamins but they wouldn't help), and space out everything else.

Tomorrow they are going to do an upper GI study to be sure she is OK for a GI button. They won't be putting that in until the beginning of next week, to be certain she is healthy enough for surgery and that she definately needs it.

Otherwise she is resting well and breathing better. She's not so rumbly and her mouth not so gooey, so I think she's got less secretions in her throat.

Her glucose levels are up and down, they are working to find the right dosages of Lantis and Novasomething (insulin in shots) for her.

Here is just an interesting tidbit her ICU doctor told us today: they have recently treated a child who was shot by his brother with an Airsoft gun in the chest, and it penetrated to his heart and he lived but has a new hole through two chambers. Wen: go buy a chest protector.

I think Wen is doing well, he asked me yesterday when we would be home, that he just wanted to spend time with Kate. He also asked if we could get a wheelchair and take her out places! OT will be bringing her a wheelchair tomorrow to help her spend time in a sitting up position to keep her joints healthy.

Please pray that we get into a large and comfortable room, that Darryl is comforted as he stays home, that we will have safe travel back and forth, that our Medicaid waiver goes through with miraculous speed, and of course still for Kate's diagnosis to be made and her to be comfortable.

Blessings, Lesley

Wednesday, July 16, 2008 11:28 AM CDT

Hi. The doctor plans to move Kate out of ICU today, but I don't know where to. The rehab doctor decided that she needed more medical care than rehab offered, so we'll be going somewhere else. Kate is now insulin dependent, plus had a little hydration problem overnight, so those are the issues. The metabolic doctor says that the insulin dependence is another clincher for mitochondrial cytosis, but I believe she will still want to do another MRI to see if there have been any neurological changes since last week to make a final diagnosis.

Since they have to intebate (vent tube) and sedate her to do the MRI, they are going to try to do surgery at the same time to put in a "GI button", which is a direct access into her stomach, where we will feed her.

They also will replace Kate's IV insulin with some other named medicine that goes under the skin. We have dealt with sub-q medicine before when she was on chelation therapy to reduce the iron buildup from transfusion.

Yesterday afternoon she got choked on mucus/secretions and threw up. The nurse and I cleaned her up and then I picked her up and held her in the chair while the nurse changed her bed. Kate got calm and one of her legs bent (she generally holds them very stiff) and I enjoyed the time with her. She threw up 2 more times after visiting hours, but has been fine since.

I think that yesterday Kate also got a little over-medicated, but my sister and brother and I took the chance to detangle the mass of her hair in the back. I know she was drugged if she laid still and let us do that! By the time we sent my brother out for hair bands to try to put all her hair up she had woken up enough to protest and sling her head from side to side, so we quit. We are going to try again this afternoon right after her 2pm dose of methadone. My brother came back with Auburn tattoos for her, which I have not applied, yet.

OT came today and worked on her hands, arms, and shoulders to keep them flexible. Kate really liked the shoulder massage and got really relaxed while she was doing it.

Kate is calm now. She just had a little bout with gooey mucus in the back of her throat, but she is breathing through her mouth and I suppose that makes her worse. She looks exactly like herself, especially when her mouth is closed, and she opens her eyes and closes them. I don't think she really "sees" anything, but when I wave my hands in front of them she shuts them tight, so she has some sort of vision.

She doesn't seem to need as much methadone and atavan, and they just give those on schedule.

So, moving to the floor will be good, it will be quieter and we will get to be with Kate all the time. But also we will *have* to be with Kate all the time. It's been nice to get to go away and sleep at night, and to leave during the 3 hours a day and know that the nurses are watching her through the glass. We won't have that on the floor, but we have lots of family who are eager to spend time with Kate.

I hate to have to write it, but please do not try to visit us. I know everyone means well and wants to be helpful, but Kate gets irritated by noise and commotion, and the rooms are small and usually only have one or two chairs, and it's just not appropriate for us right now. Plus I admit to being tired of talking about it over and over. I'm glad to have Caringbridge to get the word out and I'm glad all of you check in on us and care for us.

Isaiah is sitting up and protesting loudly, what a great sign.

I thought I might recap for those of you who are new to the site, there seem to be a lot lately and I appreciate all your concern. Kate just turned 7. She was born with Diamond Blackfan Anemia (she didn't make red blood cells) and had a bone marrow transplant when she was 2. It was very successful and she has lived a very normal life since then, although she has been small and a bit uncoordinated. Due to that, and a few other things, we had begun looking into the possibility that she might have a mitochondrial cytosis (a genetic defect of the little pieces of your cells that use nutrients and create energy) but no tests were conclusive and the docs all said "there's no way she could have survived a bone marrow transplant with a mito disease." On Saturday June 21st, she threw up a couple of times, but she does that occasionally, and she had no fever. We went to a fundraiser for Camp Sunshine, to the ball park, and to friends' to swim and eat. Then about 3am Sunday morning she started vomitting, had some diarrhea, and ran a 101 temp. Looked like a normal stomach bug, but Monday morning she was breathing funny, so we went to our pediatrician then to the ER, and stayed at Huntsville Hospital until Wednesday, when we went home. Then Thursday morning she started throwing up again, we went back to the ER, and she just seemed to take a dive. She was altered, her blood chemistries were off, finally they had to put in a breathing tube and central line and fly her to Children's. We have been in the ICU for 20 days, and have had some really really lows and some highs. But it seems to be settling out that Kate does have a form of mitochondrial cystosis called Kearns Sayre Syndrome, which normally is diagnosed in the early teens, and the life expectancy is in the mid 20s. No one understands the hows or whys, but it seems that her mitochondria just quit working, and the fact that they can't work has damaged her brain and will possibly progress to other organs, and possibly continue to progress in her brain.

We love her and she has loved us, and we will continue to care for her and love her as long as we have her. We are very, very glad that she never knew that she had this disease.

Please pray for Kate that she will be comfortable and not choke on the secretions, that she can be taken off the IV insulin, that moving her to a room will go smoothly and she will be able to remain in a room and that we will quickly be able to go home.

Thanks to you all for your faithful prayers, Lesley

Tuesday, July 15, 2008 11:22 AM CDT

Kate is much, much calmer today. I don't know if it's that the methodone works better than fentanyl (it didn't before), or if her tummy was hurting from CDF, or if her brain is learning how to handle stimulus. It's probably all the prayer. Just since I've been with her since 8:30 her periods of irritability have tapered off, and her heartrate and respiration rate are the lowest I've seen. She still has a little decreased breath sounds on her left side but they don't seem concerned, she's had them a few days.

Her glucose is still not under control, but by the afternoon she will be on feeds and off the IV nutrition and it's possible it could stabilize better (although it didn't last time, but she had lots of steroids then). They'll have endocrinology look at her.

Her sodium is down, they don't know if that's a kidney problem due to mitchondrial cytosis or if they just switched something (I can't remember what they said it was) and the sodium level she's taking in is less, so her kidneys haven't figured out what to do yet.

Kate is resting comfortably. She snores as she still has a bunch of fluid moving around in her chest. She opens her eyes wider today than yesterday. She doesn't focus on anything, but if I'm in her range of vision she acts irritable (I don't take that personally). She will wrap her fingers around your hand sometimes, which she didn't do yesterday. Kate still holds her legs out very rigidly, although she can bend her knees, I've seen her do it. The PT therapists had a hard time getting her to bend them as it irritated her. I do not believe that she will regain any sort of intractive ability, but it would be nice if she were not so stiff and didn't upset for seemingly no reason. The doctor said it's like a baby that doesn't like what's going on and doesn't have any way to respond except through crying.

The doctors are working on getting her off all her IV medications today/tomorrow, and hopefully tomorrow they will move us out of ICU. Where we go is unknown. The rehab doctor will come and say whether we can go to rehab or to a regular room.

Please pray that she will continue to be calm as they switch out her medications, that we will move out of ICU tomorrow, that the DNA tests will come back quickly, and for us. Darryl has gone back to work, which I know is extremely difficult for him to do, he has taken such excellent care of Kate and of me, and he's still doing that by taking care of Wen and his career. Wen is staying with Dad during the days, our wonderful babysitter is off this week.

Isaiah is still here, and he just got his vent tube out about 5 minutes ago and seems to be doing well. Ian has been able to stay home, I got emails from him mom and grandmom. I can hear a doctor talking to someone in nearly the same situation as we are, and it reminds me that we are in a hospital full of grieving families, we are not alone, so please remember them also.

Your prayers are comforting and they have helped Kate, please continue! Thanks, Lesley

Monday, July 14, 2008 8:19 PM CDT

Darryl and I were grateful for the little break we took last night. I did check my personal email, but didn't answer the phone, and I think it was helpful to get away. I certainly enjoyed being with Wen again.

We came back to the hospital this afternoon and met with the metabolic doctor, a neurologist, Kate's transplant doctor, the medical student assigned to us, the social worker, the ICU doctor, a chaplain, and another person who I think was a doctor. We discussed what they thought about Kate and what we thought. The metabolic doctor has talked to other metabolic doctors and they all agree that she must have a mitochondrial disorder, probably Kearns-Sayre syndrome. They aren't completely positive, and can't be without the DNA testing from Baylor. The doctor will call them and ask them if they could do it faster. Until they are positive, they will continue to treat her for any possibility. Once they are positive, we can make decisions about her treatment.

For now, the plan is to get her off the IV fentanyl and replace that with methadone. They are also going to try a drug that they give brain damaged patients which helps them with this "brain irritation" as they have called it, if the rehab doctor agrees (tomorrow). This is the part when she suddenly cries and today she is thrashing her head around and pulling her hands up to her face. She will pull the feeding tube out if they don't watch it.

Once she is off the IV sedative, they want to move her to the rehab ward, where they will get Kate and us ready to come home eventually.

They continue to treat the CDF (sp?) "infection" in her intestines, but have stopped the acyclovir as her tests for brain/spinal infection were negative.

Her sugars seems to be coming under control, and they will get the insulin down really low, but as soon as they cut it off, her glucose shoots back up. They are going to have the endocrinologist look at her again.

We have to learn to live with this new normal that we have, so Darryl has gone home to try to start back to work. I'm staying here, I still have a bit of vacation time left due to others' generosity. Our brother and sisters are going to come and stay with me at night in the hotel. Hopefully she'll be in a room in 48 hours and I can stay with her.

Please pray that the DNA test results will come faster than possible, that the methadone and/or other drug will calm her irritability, pray for Darryl and Wen at home and for me here at the hospital and for our families.

I got to hold Kate today for the first time in 3 weeks and I think she liked it as much as I did. Her oxygen sat started to drop (I think it was because her head was tilted) so I quit but I am very grateful for that time.

Thanks always for your love and prayers, Lesley

Monday, July 14, 2008 6:41 AM CDT

I'm sorry I didn't update yesterday, I just didn't have the heart to do it.

The results of Kate's lumbar puncture are that her lactic acid levels are 4 times normal, only the second time the metabolic doctor has seen that. This shows that the mitochondria in her brain are not working efficiently/correctly, and they are throwing off lactic acid as a by-product (like when you exercise too hard, when you aren't using oxygen efficiently and your muscles burn). Also the proteins are elevated and that means encephalitis or encephalopathy, I can't remember which one she said. They are giving her acyclovir for that.

This means that Kate will not recover. She may get worse, she may get a little better. She might come home, but she will not be our Kate. It could take weeks more to get home, and even if we did, eventually her brain would quite directing her body properly, but how long that would take is unkown.

No one knows what will happen, when it will happen, or why. There is nothing we could have done to stop this, lessen this, or even know that this would have happened. Her situation is so confounding to the doctors, but the lactic acid level is the one definate that the metabolic doctor can identify. We won't know DNA results that would back that up for a while.

Kate is on vancomycin because she ran a fever Saturday, so it's precautionary, and also still on her insulin drip. Her glucose levels were coming down well, but when they stopped the insulin it went back up over 300. She is on a fentanyl drip because it helps keep her calm. She is getting IV nutrition and some vitamins that you give for mitochondrial disorders but that don't help.

She lies in her bed peacefully, breathing a bit hard, and sometimes she scrunches up her face and stiffens her back and legs and makes little cries like she's in pain, but the doctors reassure us that it's not pain, it's a typical reaction when the brain isn't processing properly. The fentanyl helps reduce those episodes and that makes us feel better. When I try to suction the gooey out of her mouth she clamps her lips together, so she's aware of some things, but she doesn't focus her eyes when she opens them or make any kind of sign that she is aware. She is sensitive to touch and sound, so we keep things quiet.

Mom and Vance brought Wen down yesterday to see her, and on the advice of the hospital chaplain we three came home last night to spend some time together. I'll be going back today. Darryl's sisters stayed with Kate.

I want you all to know that through of the trial of the last four weeks and the precious help of our family and pastors and chaplains, Darryl and Wen and I feel a great peace about Kate, despite our sadness. She has had a happy and full life, despite her health problems, and she has been loved far and wide by everyone from family to internet-only friends. I prayed so hard to have Kate, and when she was born, I prayed over her the prayer of Hannah in 1 Samuel 1:27-28 "I prayed for this child, and the LORD has granted me what I asked of him. So now I give him to the LORD. For his whole life he will be given over to the LORD." My children belong to the Lord, for their wholes lives, no matter how long or short that is.

Before Kate's transplant, we studied in BSF the book of John, and the story of the man born blind (John 9:3) became very precious to me. The disciples saw him and asked Jesus why he was born blind, did he sin or did his parents sin, and Jesus answered "this happened so that the work of God might be displayed in his life." Our prayers are that we all might see the work of God in her life, and secondly, that Kate not suffer. Pray also for our physical strength and endurance, and for our families.

Thank you for your thoughts and prayers and gifts. Thank you to our neighbors who have been taking care of our home and yard. Thank you to our families who have loved us and cared for us.

Saturday, July 12, 2008 2:58 PM CDT

We have had a very big setback, please pray urgently. The doctors became concerned today that Kate was agitated constantly and couldn't be calmed down, and her body was getting rigid.

They had a neurologist come and look at her to see if there was any explanation, and they decided to do a spinal tap to test for infections, viruses, mitochondrial disorder, who knows what else.

They have completed the tap and she did fine, they sedated her and didn't have to put back in the breathing tube. It's possible that they might have to do an MRI later and that will require intebation.

The doctors don't have any idea what it is, what it could be. Please just pray for Kate to miraculously recover.

Lesley

Saturday, July 12, 2008 10:00 AM CDT

Good morning, Katie is still holding her own without the breathing tube, and is even off oxygen. She pulled the nose thingy off herself yesterday afternoon and did fine without it so they left it. The raspy breathing sound is better.

Dr. Tofil pushed on her belly and she didn't act like it hurt, so that's a good indication that there's no appendicitis or pancreatitis (or the pancreatitis is very mild and caused by the shock and will get better).

She isn't alert, she's pretty out of it, and is sometimes calm and still and sometimes she stiffens up and scrunches up her face and cries. She acts more like she's mad than in pain. It could be withdrawals (she does better after a dose of methadone), could be a sore throat that she keeps waking up and realizing she has and forgets that she already knew that, could be an unspecified pain, could be some difficulty in her brain re-orienting herself and processing the stimuli in her body and her surroundings, all of which will take time to repair itself. Remember that her MRI was good and so we have no reason to suspect that she won't "wake up" fully. Dr. Tofil talked to Dr. McGrath again today and they just said it would take time.

The least little bit of stimulus can upset her, and we have found that she is calmer when we are not with her. Hearing people talk, touching her agitates her. It seems to make her angry when she sees me. So we have chosen to stay out of her room, and to just go back and check on her regularly. That's hard on us but it's better for her.

I'm going to run home for a few hours and pay bills and come back.

Please be praying that Kate will quickly recover herself, that she will not be in pain or be agitated, but will rest well.

She also lost her first tooth Thursday, which I've kept forgetting to tell you all. We have saved it for when we get home. I'm sure the tooth fairy will be very generous.

Blessings, Lesley

Friday, July 11, 2008 10:40 AM CDT

The tube is out!!! Yeah!!!!! They took it out at about 9am after they unhooked the ventilator for a bit and watched her. She was very upset, probably from all the tape they had to take off her face, but finally she settled down. She has some strider (sp) which is this long intake of breath (I think) and it sounds wheezy, but they are giving her albuterol treatments and she is getting better. She just needs to lay still, but of course the albuterol mask and the hourly glucose checks aren't helping. Plus I had to change her diaper. We are trying to get her to be positioned in the bed with her bottom in the bend and her upper back along the top, tilted up. She has different ideas, and when you slide her up she stiffens completely and that makes her slide right down. Then she wiggles around until she sideways in the bed and one leg is sticking off.

Pray for calm, easy breathing and for her to wake up and be calm and herself, although these can be mutually exclusive things.

Yesterday was another day on the rollercoaster of horror. The ICU doc went with her to get her MRI, and told us when we came back that her basal ganglia were lighting up (where the brainstem meets the brain) and that was bad, and then the radiologist called and said "lesion due to metabolic disease" and the ICU doc said we'll get the tube out but after that we're so sorry. Don't bother imagining how bad off we were yesterday, no one needs to ever feel that bad. When we came back to the hospital at 4 we told them we absolutely had to talk to an neurologist before we left. They closed the ICU at 4:30 and to our knowledge never reopened it due to a trauma, but at 5:30 they called us back and her neurologist was there with 6 other neuro residents, and he gave us the great news that she passed a neuro exam with flying colors, and that the lesions were only due to her current illness and were reversible with time as she healed. He said her body didn't reflect what the "d**n MRI" showed. I asked if there was any reason to suspect that she won't be herself when she finally wakes up and heals, and he said no, that the only thing he suspected was that she may have some new weakness in her left leg, based on the results of the exam. No big deal, we'll just do more PT. Oh, he also said that if she's had a worsening metabolic condition that caused the lesions it would look different. He couldn't compare yesterday's MRI to October's because your brain just looks different when you are sick and it wouldn't give him good info.

I asked again about the possibility of ruptured appendix, and the doctor said highly unlikely if it was ruptured it would continue to throw out infection and she doesn't have any more infection (she does have C-diff in her intestines, which is a side effect of all the antibiotics). When she is awake enough to tell us, they will ask her if she has pain in her side and if so they'll do a CAT scan.

PS. Dad and Tiff, the enzyme thing is possible but not with the drugs she had, it's specific to another drug.

Also, her glucose level is much more controlled. Her pancreas "numbers" are a bit higher than normal, indicating a mild form of pancreatitis, which is also entirely likely due to something which I can't remember and I left my notes in her room. Anyway, it's not a worry at the moment.

More tests show that the acidosis is entirely attributable to the diarrhea and not metabolic. Yeah!

I want to thank you all again for your prayers and well wishes. Our minister came down today and brought us communion, reminding us that Jesus himself prayed for the cup to pass by him, just as we prayed yesterday, and that God understands our suffering as He watched his own child suffer for our sakes. There is no explanation for why we suffer, why bad things happen, why us. Life is what it is, and there are so many people here surrounding us who are in just as bad if not worse situations. We have watched three families lose a child here, that we know of, and we are blessed to have our baby and be hopeful of her outcome.

I haven't mentioned our employers, Torch Technologies and Sparta, but I want to say what a blessing it has been to not worry about our jobs, which we haven't showed up at in weeks now. People have donated vacation time to us, which is fantastic as we are both in the hole now, and Darryl has commitments to take a team of boys to Cooperstown in a couple of weeks. Thank you so much. I think vacation time is one of the most precious things we have and giving it away is generous and loving, as I am quite stingy with mine! Please do pray that Kate will be in a situation by Sunday so that Darryl can go home and be with Wen and work some.

Wen has enjoyed camp this week, and is at graduation now and will enjoy a weekend with my parents. Summer is so short and so full of baseball and camp that is gets by us without a weekend there sometimes.

Thank you thank you. Please continue to pray for Kate to make improvements, to return to herself, and for her body to strengthen. Pray for Darryl and my physical health and particularly my back. Three weeks of sitting in hospital chairs made for people taller than me is getting to me! A nurse here that is from my church at home told us about a family lounge on her floor that is muc more comfortable, private, and has a less-used bathroom and we are using it. They have a chair that fits my body and my back feels better after I sit in it. (I'm short for those many of you who don't know me).

Best wishes to everyone leaving for Camp Sunshine this weekend, we so wish we were there too! Please be sure to update us with the new information the doctors have.

Blessings, Lesley

Thursday, July 10, 2008 12:26 AM CDT

OK, some good news. Kate roused a bit without anyone trying to get her to and opened her eyes a crack a couple of times. Typically Kate Burnette timing: she did this 15 minutes before they planned to take her to get her MRI. FOR WHICH THEY HAVE TO SEDATE HER!!!! AHH!!!!

So, that's good news that she is rousing and the doctor was thrilled. But now it will be hours and hours before she's able to try that again. Please continue to pray that she'll come out of the sedation quickly and be willing to follow the doctor's orders (open her eyes and hold up two fingers. If you know Kate you know that getting her to do anything that they want her to, when they want her to, is going to be a miracle in itself!

I know you are all concerned and I try not to freak anyone out but I am still honest with what's going on so that you can all pray for the right things.

They are also starting her on some specific vitamins which the metabolic doctor suggested which could help her in case she has a metabolic problem. I haven't explained it, but a mitochondrial condition is one in which the mitchondria of your cells do not properly process nutrients, and the missing nutrients and/or the waste products of that inefficient processing can do damage or cause you problems. Those waste products are oxidents, which we hear a lot about regarding anti-oxidant vitamins (the oxidents are frequently called free radicals). Mitos are the little parts of your cells that process the nutrients into energy. I'm not much up on metabolic issues, but they are related. It could be mild, it could be serious, it could cause or explain a whole host of other problems from the DBA to the droopy eyelids.

So it's possible that Kate has a mito/metabolic issue going on, and that issue might or might not have caused this whole situation, been magnified by this situation, made this situation tougher to resolve, or just got the doctors to look into because of this situation. We don't know, we might not ever know.

Also I can't get into my work email/websites and knology email seems to have made some "improvements" to their website which are preventing me from getting any email right now.

Love you all, Lesley

Thursday, July 10, 2008 10:22 AM CDT

Good morning,

They are not going to try to extibate Kate a she is too sleepy still. The doctors are concerned about why she won't wake up, given that she hasn't had any sedatives in 36 hours (although they did give her some atavan this morning as she was uncomfortable but still not awake enough to follow any commands). It could be just a build up of two weeks of sedatives, or it could be something else or something related to an underlying metabolic condition. She is still acidotic, and some of that is from having diarrhea (part of withdrawals) and some of it from whatever is under all this.

Endocrinology came and checked on her to see if they had an idea why her glucose is varying wildly, but it's not a big concern.

They will do either a head CT or MRI, depending on what the metabolic doctor wants. They have a CT from the ICU in Huntsville and an MRI from October to compare it to, so it should be very helpful.

They are discontinuing all the sedatives unless her nurse feels like she needs them. They are adding back in hyperall for nutrition but no other food yet.

The venitlator is barely doing anything, and her lungs are healthy and everything else seems very good. We are of course quite upset and discouraged about this end to the progress. The doctors are going to be meeting over it all today and hopefully will have some ideas.

The best of all possible things is for Kate to just wake up and get the vent out and get back to normal to regulate herself. Please pray for that.

Also please pray for the doctor's wisdom and for them to discover whatever the issue is. Pray for Kate to be comfortable and for whatever tests need to be run to happen very quickly and the results to return quickly.

Thanks for all your prayers and support for us,
Lesley

Wednesday, July 9, 2008 5:10 PM CDT

STILL SLEEPING! AAAAAHHHHH!

Kate is sleeping so peacefully, we'd be thrilled if we weren't so impatient to get this tube out and get out of ICU. BUT, since midnight she has had NOTHING in the way of medication save for insulin (not a big deal, just hard to regulate her blood sugar when she's getting so much IV dextrose in wildly swinging doses) and a dose of Protonix as an ulcer preventative (just in case). So, no antibiotics, no blood pressure stuff, no painkillers, not even Tylenol. She's over her illness and now she's sleeping it off.

The doctors say as soon as she wakes up they'll pull it. She has roused a couple of times today, just barely getting her eyes open, but she can't sustain it long enough for us to get a doctor over.

I, apparantly, have no problem being "awake" even when I'm asleep. I took an Ambien last night on the way home from the hospital. Usually it takes an hour for one to work, and they are very very mild, and frequently they don't even help that much (I just take them if I've had a hard time sleeping for several days). But last night I started getting sleeping as soon as we got to the hotel room, and went right to sleep. I thought. I said something to Darryl about it today and he said "Yeah you were really loopy talking on the phone." A friend called me last night and I had a whole conversation with her, which I don't even remember. I wonder what it says about me that she didn't think I was that off!

Pray today for Sam and Reggie, my neighbor's dogs who got attacked by a pit bull mix that got into their yard and attacked them last night. I think they will be OK but Reggie may lose an eye. Kate would *really* be inconsolable if she woke up and realized she missed her birthday, DBA camp (which is next week in Maine), and we lost her buddy Sam.

Good luck to the American League All Star Teams. The 11-12 year old team is going to State and the 12 year old team is playing tonight to win the district championship and go to state. Win one for Kate!

Blessings, Lesley

Wednesday, July 9, 2008 12:42 AM CDT

Still sleeping....

Wednesday, July 9, 2008 9:30 AM CDT

They haven't taken the breathing tube out yet, Kate's too sleepy still. That's good in a way, because she's not having withdrawals from the narcotics (our little junkie!) and they are able to reduce her methadone and atavan.

As soon as she is awake they'll take the tube out, so be praying all morning that that happens quickly. I'll update the website when they do.

Thanks, Lesley

Tuesday, July 8, 2008 10:26 AM CDT

Hi, this will be a waiting day for us. They have taken Kate off all IV medications, except for an insulin drip (because her feedings have so much glucose). She gets atavan and methadone through her feeding tube, and they have discontinued the fentanyl and versed. She is getting 6 more doses of Decadron to keep her airways open. The vent is on the lowest settings, and they will try the CPAP test (almost turning off the vent) tonight at 7, and if all is going well they will try to extibate her again in the morning.

The doctor said that she felt the problem might not be swelling alone, but also secretions that she was unable to cough up. So they are going to get her more awake for the next try. She should be more and more away today. Yesterday Kate would open her eyes most of the way, but she's in a foggy, drugged state and doesn't seem to see anything or care about what she sees.

She does stir a bit and it seems like she's trying to rollover onto her back to sleep. Yesterday Kate was yawning too, that was funny. It's wierd to see her yawn and cough with no sound coming out (because the air doesn't go over her vocal cords but rather through the tube). She has periods of sleeping and waking. They also took out the central line yesterday, and her other arm IV. She has the arterial line in one wrist and an IV in each foot.

Now that we are not afraid of Kate getting into a crisis, we feel comfortable leaving the hospital during non-visitor hours. The nurses watch her constantly, so we are confident that they can care for her. We find it very helpful to get out of the hospital during those two 1.5 hour non-visiting hours during the day and we go get something to eat or run an errand. It's good to get somewhere quiet and to be away from the hospital. We have even both slept at the hotel at the night, at the same time! I have to admit that even after a full night's sleep I don't really feel any different.

Please continue to pray for Isaiah, I am worried that he is not improving. They will be here even longer than us. Ian is still here, in a private room, and I visit with him mom a bit every day. They should go home soon, but his problems are still not fixed.

Pray for Kate to be awake and comfortable in the morning, and for her throat to be open and clear when they pull out the tube and afterwards, and that we can leave the ICU Thursday morning. Also pray that her arterial line will continue to work for a few more days.

Blessings, Lesley

Monday, July 7, 2008 10:31 AM CDT

Well we are very disappointed this morning. They pulled out the ventilator tube this morning, but Kate's throat started swelling and they had to put it back in. Her lungs are very strong and doing well, but the swelling surprised them. They have put in a smaller tube and will treat her with steroids for 48 hours and try again. So, 2 more days here in ICU.

They have taken out her catheter and given her the last dose of antibiotics. Also they are weaning her off of the IV sedatives and going to give her methadone and atavan by IV on a regular basis. This is because she can't leave the ICU on IV sedatives and this way she will be prepared to leave the ICU 24 hours after being extibated (the vent tube out). They are going to remove her central line this afternoon, leaving the IV and the arterial line.

It will take her 5-7 days to wean off the painkillers, so we are looking at at least 10 more days here in the hospital, and at least 3 in ICU. I'm trying to be as positive as possible, but I've hit the wall on the ICU waiting room.

Please pray for Kate's throat/airway to become completely normal, for her to not need too much in the way of sedatives, but to be calm and restful. And pray for our endurance and patience and to view the other people around us in the waiting room with patience and love. I'm afraid I'm not feeling so humorous about them the last couple of days. There was only 1 person in the waiting room Saturday, but then yesterday it just filled up completely and I think the sudden change in the noise/energy level, combined with my flagging energy just put me a bit over the edge. It's hard to find some times of peace and quiet and after 11 days here we could use some!

Wen is enjoying camp and we are glad he is occupied.

Thanks so much for all your well wishes, gifts, and prayers. We so much appreciate it and feel the love! Lesley

Sunday, July 6, 2008 9:09 AM CDT

Today is prepare for extibation day. They will lower Kate's respiration rate setting to 10 (it's at 16 now), leave the peep at 5 and O2 at 35%, and then sort-of cut off the respirator machine, but it's not really off, it's more like a CPAP setting which doesn't help her breath but makes it easier for her to breath. They'll do that at 4am and if she does well on that they will remove the tube. If not, she'll stay on the vent a bit longer.

They'll also be cutting back on her sedatives, giving her some decadron to reduce any swelling in her throat, increasing the lasix from 2x/day to 4x/day to finish off the fluids, and then they will dicountinue her feeding at 12 midnight so she'll be NPO. They will give her PRNs as needed (pain meds given all at once rather than in a continuous drip).

They are going to spend today increasing the amount of food she gets, until 12pm.

She's still on the maintenance nutrition/fluids like hyperall, lipids, TPN. Kate's got one more dose of one antibiotic but they rest are discontinued.

Otherwise, all seems quiet in the PICU and in the waiting room.

Pray for Kate to be strong enough to breathe on her own and for her to not be too agitated, in pain, or upset when the sedatives are reducing.

Blessings, Lesley

Saturday, July 5, 2008 11:33 AM CDT

Kate is continuing to improve and they are continuing to wean the ventilator, dopamine, and sedatives. Her peep is now 5, the oxygen at 35%, the nitric machine is completely gone, and the resp rate is 19. Her lungs are much healthier. The lung peak pressure had been up in the high 30s but is now at 15, which is about normal. They have to lower the fentanyl and versed to bring her out of the sedation so she’ll breathe more on her own. But this will agitate her and so it ain’t gonna be pretty around here for the next couple of days. They are increasing her feed quantity to 15cc/hr. Dr. Leslie is thrilled with her urine out put. Kate’s still getting a bit of insulin and some lasix. She’ll be on her antibiotics just one more day. Dr. Leslie says that she might be ready to extibate (remove the ventilator) Monday morning, and if so, Dr. Leslie will come in early to do it herself because she doesn’t want to hand her off to next doctor in transition. So we probably won’t get to be here for it, which might be a good thing for us, maybe not for Kate. I asked if we could come in even though it’s not visiting hours, but they say the kids do better without the parents.

I enjoyed my short time at home. I first sorted through the massive amounts of food-stuffs we’ve been given and brought back what I wanted to share with my fellow wait-mates (I had made a basket like this a couple of days ago – more on this next paragraph), what I thought we’d never get eaten at the hospital (and we are SET for lunches for the next school year) and what I wanted to bring back
down. I’m munching on some trail mix as I write, not good for the touch pad. Wen and I did a bit of last minute shopping for camp, got some take out, and watched Be Kind Rewind. I got to sleep at 10:30 but woke up at 5:30 am and couldn’t go back to sleep. And I really didn’t feel any better! But I did get the photos on the page changed and paid bills (much easier to do with all these marvelous gifts we’ve been given), ate breakfast at Gibson’s (biscuits and gravy!!), straightened out the house and took Wen to camp. I didn’t even get the car into park before he jumped out, grabbed his bags, and ran off. Total time to get there, get him registered, checked in with the nurse and bunked: 15 minutes.

If you see cars riding around Huntsville with “Pray for Kate” painted on them, I believe that the American League All Stars Team has painted their cars up for the start of the tournament today. Good luck guys, I know Darryl is itching to be there!

When I got back to the PICU last night, there were totally different parents there, and only Isaiah is still here (keep praying!). Interesting people who will walk right by the “No Children Under 14” sign, which we moved into the center of the doorway so you have to walk around it, with their toddlers and tiny infant babies. Then when the nurses make them leave, they are indignant.

Good news – the smoking family left. BUT, on their way out they picked up the basket full of snacks/fruit and took it with them.

The parking deck has a perfect view of the fireworks over Vulcan on Red Mountain and so I went out there tonight to watch them. They were very pretty and it was fun to see all the kids in their wagons and wheelchairs and IV pumps enjoying them. Right after they started the helicopter took off and turned in front of the show. It really added and exciting element but it also means the PICU would
be getting busier. They closed the unit and I had to leave at 10pm because two traumas were coming in. I heard later they had some trouble identifying one, but did, but hadn’t identified the other child. How sad! The parents may be in another hospital.

I visited with Dyan and Ian in their room for a couple of minutes yesterday. He’s still struggling. Isaiah is holding steady, but please pray for some encouraging improvement today.

Blessings to all of our faithful followers who keep us lifted up at all times! Pray for Kate to not be too agitated as she comes out of the sedative, for her
BP to stay normal, her lungs to be stronger, and for her irritated skin (from tape, fluids, IVs, and general funk from laying in bed for two weeks) to clear
up without discomfort.

Lesley

Friday, July 4, 2008 11:49 AM CDT

Good Morning from PICU and Happy Fourth… Kate had a good night and continues to improve slowly… The doctors and staff here are all happy to she her progressing in a very slow manner. Kate’s heart rate, blood pressure and respiratory numbers continue to improve. The nurses continue to work on bringing her blood pressure med down while they also continue to lower the settings on her vent. Kate also looks a lot better today; a lot of the swelling/puffiness is down because she is working hard getting rid of all the excess fluids in her little body (a lot of pee). Finally her lungs, we have all been worried/concerned about her lungs… Today they sound much better than yesterday... According to her doctors and nurses getting the excess fluid off along with her moving/wriggling some in the bed is making a big difference in clearing those up…

Thats about it, please keep us in your prays and thoughts and hopefully in a couple more days things will start to get back to normal… Well at least normal for the Burnette family… Sorry but not much action in the waiting room over night other than someone's cell phone kept going off... He must not know how to turn the vibrate mode on because it rang constantly, however he never talked to anyone!!!

THANKS TO ALL

Darryl

Thursday, July 3, 2008 11:10 AM CDT

I re-read yesterday’s blog and it reads like Kate will have lung scarring, but that should be that it’s unlikely she’ll have scarring, but no way to know.

Kate is continuing to improve. They have reduced her vent settings to 45xygen, .1 ppm nitric, peep 7. They are going to unparalyze her so they can reduce the respiration rate and she can make up the difference with her own breathing. They also had to pull out the tube 1cm b/c where it was sitting would make her feel like coughing when she woke up a bit. They had to untape her face to do that, which is the second time they’ve done it, and her poor little face is all burnt up. They have placed on a plastic tube holder that sits lightly on her face and will leave that until the end of the day to let her face heal a little.

Her urine output is still very high, her glucose is within range, and her heartrate and bp are also within range. They had reduced the dopamine again, but her hr went up overnight and they bumped it back a little. It seems to go up once a day.

They are giving her some sort of nearly-already-digested nutrition later to keep her GI tract working.

They have stopped the vancomycin antibiotic but are keeping the rest. Still nothing has grown on any of the cultures, so it’s very unlikely that we will ever know what caused the infection.

Wen is leaving Friday for Aviation Challenge Camp at the Space & Rocket Center. What excellent timing. He loves it. Last year his group won the “crashed into the wilderness and have to find your way to base” scenario and he was very proud. I asked him what they won and he said his group got to drink water first. He believes it to be a very satisfactory prize. I plan to go home this afternoon and see him off to camp and come back. I know everyone is eager to see and call and I feel awfully guilty and unappreciative saying this (and I’m very thankful for all of you) but I really need a quiet night home with my son, and we won’t need anything since we’ll both be leaving out again on Friday.

So the goal today is just still steady weaning and becoming unparalyzed, but still sedated with the painkillers.

I have a few random musings and things I’ve been wanting to write about but only had limited time:

When we got to the PICU last Thursday night, we buzzed back to tell them we were here, and this voice said “It’s nice to see you again, I’ll tell the doctor you’re here.” I thought that was strange, but obviously had other things on my mind. When they finally called us back, the lady sitting at the desk was Sonya, who had been the night receptionist when Kate was in Stem Cell. Sonya and Kate’s favorite nurse, Keisha, would take Kate to the outpatient clinic and watch Barney with her all night while I slept. Then, to add to that, Keisha is also now in PICU, and I got to catch up with her last night, although she was not Kate’s nurse tonight. We only see the night nurses for a short time, if at all because sometimes I sleep through the 12-2 visit or just pop back there for a few minutes and try to rest. I slept at the hotel for about 4 hours yesterday afternoon so I was still awake for the 12 visit, and finally slept about 2:30-6:30 this morning. Lucky for me everyone else in the waiting room was exhausted too, and the smoking family decided to settle down about 2:00, after they all had a imitation-snoring-and-laughing contest.

A nurse told Darryl they are building a new building, to include a new PICU, and each patient will have a family room with a sleeping area, TV, and microwave. That would make a world of difference. The chairs here are small, straight-ish backed, with high arms topped with finished wood that can’t be sanitary. I push two together and curl up in a ball. Other people sit up and rest their feet in another chair. Last night several people pulled the bottom cushions off, piled them on the nasty floor and slept there. I know that they discourage people sleeping in the PICU, but honestly, what do they expect parents to do? Do they really think that a parent will leave their near-death child to drive to a hotel or the Ronald McDonald House (OK, yes, actually, a number of them do, but not us). It’s reasonable to ask that no more than 2 people per patient stay, but they should provide some sort of more comfortable sleeping arrangement for those people. They do have a shower, so they at least are aware of it. The lights are bright – 3 sets of them. Florescents, then canister lights around the seating area, then sconces on the wall (my brother pulled out the lightbulbs on one). And they stay on all night – no dimming at all and the switch is hidden. I’m really impressed with the people who can sleep through such stuff, and I wish I was one of them.

There’s been a complete turnover in the families here now, and the mom and grandmother whose baby was next to us, then in Special Care, have now moved on to a new room. They were good sleepers. We are now the old-timers. Oh, Ian is off to a regular room too, and I’m about to wander up there and see if they are still awake. Isaiah is still here and seems to have not changed status. I don’t know if that’s good or bad, but his family is concerned and there’s a bit of drama there too, so pray for him and his family.

One thing I’m really impressed with is the volume of biscuits and gravy consumed here. Given the volume of the people consuming the biscuits and gravy, I shouldn’t be surprised. Baked fat spread with congealed fat just doesn’t seem like something I want on my stomach when I’m stressed, tired, and inactive. I’ve watched several people come in new to the PICU, and be told it would be about 30 minutes until they could see their critically ill child and be told by the doctor whether they will live, die, or be permantently mutilated. Apparently this thought occurs to them: “Hmm, this would be the perfect time to go get some biscuits and gravy.” Drink of choice for all B&G eaters: Mountain Dew.

We have been the beneficiaries of even more gifts. My father in law says that the trunk of our car is now riding low, it’s so full of food and gifts and good wishes. And Diet Coke! My mother in law has been washing our clothes, some of which Darryl’s sisters either bought or lent. You know how some people’s laundry always smells so good and even if you bought the same stuff they do, it never comes out the same? My mother in laws laundry smells good. Friday we are getting a shipment from work, including Greek food, brownies, and breakfast items. Our neighbors are watering plants and mowing grass, and have cleaned out the fridge. Kate’s kindergarten teacher and good friend of our family’s washed all the laundry and then Wen’s clothes this week.

We have met another social worker (I never met the first one who got us the hotel, but D says she’s who we had in stem cell) who is, by all appearances, my Aunt Rejetta’s long lost twin (in personality). She decided we needed to stay in the Ronald McDonald house, and called and got us a room and not only gave me directions but walked me outside to show me where to go. Too bad all my stuff was in the waiting room still! I did go and check it out, but D and I decided that we will be much more comfortable in the hotel, particularly since I sleep during the day. It’s a lovely place, though, new from when we were in transplant. I think the deal breaker was the no food/drink in the rooms rule. What would I do with my Diet Coke and all the other goodies? Food comes first.

The smoking family, for lack of a better name, is still assembled. Last night they brought a small child with them to hang out. At 11:30 pm and she was running around and they were offering her candy. I was going narc on them when I went back at 12 (there are large and clearly posted signs saying no kids under 14), as personal confrontation with people whose cell phones play Deliverance isnt’ wise. It’s really quite dangerous for kids to be here, there are infections, staph, meningitis and TB cases in the PICU, not to mention what germs they might be bringing in. The other PICU waiting room inmates are also complaining about their behavior.

One of my fellow wait-mates had a c-section 7 days ago and has been sitting in this waiting room 24-7 since they got here about 3 days ago. Her feet are all puffed up and I feel so sorry for her. She went home yesterday to get her staples out and came right back.

On the smoking topic, when I was walking in the hospital yesterday afternoon I passed a lovely family taking a smoking break. Both the mom and dad were partaking while their handicapped child sat in his wheelchair with his IV pole (maybe about 7 years, old, probably had cerebral palsy among other things.) I suppose they thought he’d like some fresh air. I bet he would.

I know my musing run off the road from humorous observations to downright judgementalism. Getting it out on the blog at least helps it from growing exponentially in my brain!

Thanks again for everyone’s posts, cards, gifts, etc. etc. We can’t reply back to everyone and probably will find some thank yous falling through the cracks, but we do appreciate all your thoughtfulness and love and concern. Dad said he sat in Gibson’s (this is a local restaurant where Kate holds court every morning over breakfast) until 10:30 Tuesday and took well wishes and answered questions.

Blessings, Lesley

Wednesday, July 2, 2008 9:20 AM CDT

Good morning!

First, let me apologize for freaking everyone out yesterday. Kate has had ARDS (acute respiratory distress syndrome) this whole time, it's just the first time I'd heard those words. She has ARDS, sepsis, and shock. But it's not a new diagnosis. I wanted to logon and correct my blog, but my brain is so fried I kept trying to logon to my work computer using my home login and couldn't figure it out (thanks, Dave!).

Kate is doing really really well. Dr. Leslie's quote is "she looks so good." But, slow and steady wins the race and we will not be attempting any big gains, but a very very slow weaning process.

Dr. Rutledge, the metabolic doctor, came by and said that Kate's metabolic panel isn't normal, but it's consistent with her current illness, so she does not believe that she has a metabolic issue (very good news). If we come out on the other side of this thing ruling out metabolic or mitochondrial issues it *might* have been worth it. I'm reserving my judgement yet!

They are working on giving her the right amount of paralysis - they currently have her paralyzed too much because apparantly it takes a horse tranquilizer to get her down but not much to keep her there.

They gave her just one dose of lasix yesterday, but all night she has had great urine output - an excellent sign that she is resolving her infection.

Her respiratory system is improving. Her blood gasses always come back perfectly, and occasionally she breathes over the ventilator (despite being over paralyzed). Her chest x-ray today looks better than yesterday. They are going to wean down her nitric oxide today, and keep the peep up at 9 as the pressure keeps the fluid out of her lungs.

Her dopamine dose is about half of its high, and her bp has been holding at 110/50ish. While were were in there this morning, it dropped and stayed low. Dr. Leslie has decided that since her HR is also low (good), she will reset the parameters and allow her to maintain a lower bp. If her hr goes up they'll give fluids or more dopamine. They have noticed that her heartrate goes up every afternoon.

They are continuing all the same meds, hyperall, lipids, and TPN. They aren't going to give her any food today as the dopamine restricts the bowel's functioning. Maybe tomorrow.

To prepare for receiving the food, they are also tightening her glucose levels, and so she might end up back on an insulin drip if her glucose stays above 200 (before it was ok anywhere below 250).

I'm going to go to the hotel and sleep, even if it means missing visitation time today, I'm beat. I got some good earplugs and a black bandana for an eye cover, and went right to sleep about 11 last night, sleeping through 12-2 visitation. Then at 2:30 a large family of 16 people whose 2 year old had pulled a TV onto himself came it. They were really revved up and noisy (understandable), and at 3:30 once they finally saw him, they all left en masse for a smoke (which they stopped to buy on the way to the ER - lovely). When returned en masse from said smoke, I had to leave. I bought some water, wandered the halls then tried to walks some stairs. I am so way out of shape. 10 flights and my muscles are still quivering.

Finally I gave up any hope of sleep, and after the group had woken up the entire waiting room by 5:30, they all fell asleep. We all hate waking up early because the wait from waking up to 8:30 visitation is so long.

We have met several nice and a few interesting families here. One of the "interesting" families had a fist fight in the hallway, with my brother breaking it up and telling them all "You all just get on home now." It was a child abuse case. One mom, whose baby was right next to us, slept almost nonstop while she was here, seeing her baby very little. We have overhead another family whose teenage daughter is in the exact same situation as Kate, only since she fainted she got here sooner and isn't as bad off. They don't know what her infection is either, but she has been at camp.

We have loved all our nurses so much. Kate has them all wrapped around her finger, even though she's unconscious. They love taking care of her, and several have made comments about how they have enjoyed their shifts so much this week. They are all so skilled, and almost every one of them has a Huntsville connection - most of them are from Hsv, and our nurse today is the granddaughter of some of our church members. She didn't realize it until she got an email from them asking her to pray for Kate.

We have had very much help from very many people. Our ministers have been here, and one brought a prayer shawl that some lovely ladies in our church make and they bless on the altar. One of her friends from school sent her a Build-a-Bear (one of the things it says is "Let's go home!"), and another sent her a goody bag. Another friends' mom brought the best of all possible gifts - ice cold diet coke in a can. Friends have given generously of their time and money (that helps us buy food and it will help with gas when we start traveling back home), and we hear there is more on the way today. My trunk is full of snacks and drinks and things to do and we bring in a few when we come (real estate here is minimul - we have two chairs and the space between them and we don't like to keep too much because we don't want to leave things unattended). My brother brings us good and mostly healthy lunches every day. We generally eat the only two healthy items the cafeteria offers (boiled eggs and minimally wheat-ish bread) for breakfast, then eat lunch at 2:30 and that's it. I might eat leftovers at about 10:30. I ate salad and cold soup a couple nights ago, which was surprising good. I hear my office is bringing Greek for dinner tomorrow - yum. One nice thing about Bham is the restaurants we don't have, and we try to enjoy them while we are here.

OK, two other people are fighting, one has offered to knock the other's teeth out. Lovely.

Oh lovely, the smoking family is arguing over what to do with the one that's currently in jail. Plus they all have emphasema. And none of them wash their hands after they use the restroom (this is the second family in the waiting room that doesn't. I don't touch ANYTHING).

I got on the elevator a couple of days ago with a family that didn't know how to work the elevator. They were trying to get to the ER, and apparantly they just got on the elevator when the doors opened and rode it wherever it went, and when the doors opened, there I was. They asked me how to get there, I said "ground floor" and the man stared at the control panel and said "I don't know how to work this thing, we're from the country."

I say it again, there's NOTHING like a trip to Children's Hospital to humble you and stop your whining.

Keep us in your prayers today, and continue to pray for Ian (he should be moving to a room today), and Isaiah - that his infection will miraculously be healed. Pray for Kate's lungs to heal without any scarring (no way to know if they will, but likely not), that her BP will stay up, her temp down, her HR down, and her urine up. Pray for her to have a bowel movement too so they can continue the bacterial panels (but it's not likely). And good sleep for us all.

Thank you again and again for your posts, we enjoy reading them so much and get great fun from seeing the "7 degrees of separation" that connect us all. I know so many of you want to do "something", but honestly, it's such a limited existence at this point, and we are blessed with an abundance of family who tend to do better when assigned tasks, that we are at a loss to find enough things we need. When we are in a private room, and then when we are at home, that will change.

God bless, Lesley

Tuesday, July 1, 2008 10:56 AM CDT

OK excuse any typos, I'm dealing with the plastic keyboard cover. I'm grateful to be getting my laptop today.

After the many steps forward that Kate took yesterday (getting completely off paralysis, fentanyl, all bp meds, and lowering the vent settings), she has had a major setback. Yesterday afternoon I turned her on her side, listened to her lungs (which sounded like they were growling), and noticed that she was flaring her nostrils. The therapist did pulmonary toiletting (using a thumper machine on her checst to break up lung congestion then suctioning), and during that Kate did a major bowel movement (about 10 minutes after getting her first food). She wsa thrashing arond and really moving in the bed, just not able to pick up her head. Her numbers all started getting bad, and the nurse gave her a pain shot. She was doing this hard rocking breathing, so they had to put the oxygen back to 100% and reparalyze her to stop that. Her urine output went down, she got acidotic again, her glucose went back up, they had to give her insulin. Some of that was a result of stress, probably from pain and all the activity asssociated with moving around so much.

So, the doctors say that her lungs are getting sicker, although her sepsis/infection is improving (becase her cardio functions are good). It's disappointing, particularly because everyone (including them) got so excited about her progress, but not unexpected or unusual. It will mean more time on the vent allowing her lungs to heal. This is called "acute respiratory distress syndrome."

The good part of this situation is that her lungs are not so sick that they don't work - they just need help. They did add back in the nitric (hope I got that right - Dr. Patrick, let me know), but the oxygen % is only at 65% (it was as high as 100%) and the peep at 9 (they had gotten it down to 6 but it's been as high as 15). The SIMV rate is 30, and we had gotten it down to 16. So disappointing!

She won't be getting any food today. The goal is just for her to lay there and breathe. Her acidosis is resolved and her urine out put is better now that she's sedated again.

Please be praying specifically for her lungs to heal and for her to continue to resolve all the extra fluids in her body. Say extra prayers for her doctors - this is the day of the year that all the brand new residents and fellows start. We will have only one doctor, the attending, who has PICU experience. Let us pray that they will be smart enough to know when they don't know and particularly that Kate will not do anything that will challenge their expertise. The nurses are wonderful and I think always seem to know exactly what the doctors should do and hopefully the new residents will consider their views.

Here's what's she's on:
TPN (iv nutrition)\
midazolam
dopamine
lipids
cisatracurium
fentanyl
several antibiotics and antifungals

Her HR is 122,
BP 113/60
MAPS (METs?) 80
CVP 10
O2 95

I think it's time for Darryl and I to figure out some way to alternate coming home and taking care of work and house and banking. Please pray for the right timing of that as it's very stressful for us to even be at the hotel when we are scared that she might take a dive and we can't be right there with her.

That's all for now, but when I get my laptop today I may take the time to write a bit mor about the interesting and puzzling people I'v been sharing this ICU waiting room with. It's been a distraction to me to watch their soap operas unfold and forget about my own for a while.

Pray for Ian and for Isaiah.

Thank you so much for your posts, I love reading them. I don' have much computer time to email but I will soon.

Thanks, Lesley

Monday, June 30, 2008 11:06 AM CDT

YOWSA GEEZ I am frustrated! I typed a whole long long update, let the computer sit for 1 minute while I took a phone call, and it rebooted. Then the lady busted me for taking off the plastic keyboard cover which means I have backspace twice or every leter I type (se - no f, no t, no e).

Then I retyped a short update and added it, but it's not on the page.

Third time, even shorter. 5 hours of sleep doesn't set me up for patience.

Doing great, off the epinephrine, dopamine in half, lots of clear urine. All means she's shedding fluid and not leakig more. Vent weaning slowly slowly b/c she's so weak. Will do a tiny bit of pediasure through tube to stomach hourly. Off fentanyl to reduce the sedation, still on verset.

All doctors very pleased and nurses captivated by her charms, which seem to show through even when she's unconscious.

Praye for waiting room friend Diane and son Ian - to get sodium regulated, correct sleep study, miraculous willingness to wear CPAP. I tought we were pitiful for Kate's missed birthday - Diane missed her wedding on Friday.

OK, just found the second update in the history if you want to check that out. I will try to find a time when I'm less frustrated to come back and redo. I really want to tell you about the people I met on the elevator....

Keep praying for us. Thanks, Lesley

Monday, June 30, 2008 11:01 AM CDT

Morning. I just typed up a whole update, witty observations and all, and let the computer sit dormant for about 1 minute and it shut down. Plus I got busted by the lady for taking the plastic cover off the keyboard but I CANNOT type with it on! So excuse any typos and this will be much shorter than the original.

Kate is doing great. She is off the epinephrine and the dopamine dose is halved (meaning she's holding up her bp better). Her peep is down to 6, but she is still very weak so the ventilator weaning will be slow. Her urine is clear and profuse so given the bp and that, she is fixing up her capillaries and sheding the fluid buildup. They are stopping the fentanyl to let her be more awake. They will give her tiny bits of pediasure into the NG tube into her stomach every hour.

Darryl slept a full night's sleep at the hotel, I slept here about 5 hours.

Please pray for our waiting room friend Diane and her son Ian, who can't regulate his sodium and may have bad apnea but wouldn't wear a CPAP. I thought I was pitiful for Kate missing her birthday. Diane missed her own wedding on Friday.

Thank you for your words of encouragement and your prayers. Keep 'em coming!

Sunday, June 29, 2008 9:40 AM CDT

Good Morning,

The doctors are very happy with Kate's status today, so we are too. They have weaned down her ventilation, and removed the nitric gas with no change in her status. They have taken her off the milirone, which was helping with profusion (getting blood to her extremities). They are increasing the calories and protein in her TPN (nutrition), discontinuing the calcium drip and reducing the potassium. Her dosage of epi is lower (.14; her dopamine is 15) but she is still very sensitive to any reduction in the blood pressure meds, so she's still very sick.

When you have sepsis (infection in blood), then your capilaries leak fluid out into your body (and lungs - part of her problem also) and this makes your blood pressure too low. They think that Kate has peaked on the amount of fluid she's taken on, which is good, as she will begin to resolve that and we'll know that when she starts putting out more urine. At that time they may help her with some lasix therapy.

They are also reducing the amount of sedation she's on and we should see more activity out of her. So far she's been moving her jaw and head a bit, and her arms some, her legs a couple of times, and bowing her back when they move her. She definately protests when they do mouth care! The movement is good as it helps break up the stuff in her lungs and also keeps her from being as weak as she would be otherwise.

Dr. Winkler (intensivist) thought she might be off the ventilator by Wednesday if things continue this way. In order to do that, the ventilator has to be set at the same pressure that she would naturally have (5) and the % oxygen has to be at 50%. Right now her peep is 8 (it was 15 Thursday) and at 60%. She also has to be breathing well over the ventilator. They are also reducing the title volume to 120 then to 110. I don't know what that means, but some of you might.

She has no bowel sounds yet, so it will be a bit longer before they try to put anything in her GI tract. This means that she has no stool to get a sample of, which might have helped solve the mystery of the infection. Still nothing shows on any of her cultures.

Her heart rate is down, very good.

Here are the numbers:
HR 140
BP 110/50
CVP 10 (central venous pressure - they like it in the upper teens but this lower number is ok because she also has a lower HR and a higher BP)
SO2 97%
RR 25 (anything over 20 means that she is doing some work to breath on her own, not solely the ventilator)
Peep 8
%O2 60
Rectal temp 99

I went to the hotel last night and slept 8 hours, but strangely enough I still don't feel rested! Hopefully as we feel less stressed we will feel more rested. It should be an interesting day today as Kate comes out of the sedation a bit more.

We have asked our families to try to work out a schedule amongst themselves for staying down here. It's helpful to have someone to get us food (the cafeteria is AWFUL) and make phone calls, but we worry about our parents and my grandmother sitting in an uncomfortable situation for so long, and it will ease our minds to know that they are in more comfortable circumstances. I think we can all feel confident now that Kate will improve, slowly, slowly, slowly.

Thank you so much for your prayers for Kate. They absolutely worked. When I think about what terror we felt at 5am Friday morning, and how excited and hopeful we feel today, I can only attribute it to that. Despite the friendly debates I've had with my Methodist ministers about our adamant belief in believer's baptism, we did call the chaplain in Friday morning and have Kate baptised, as we did not think she would live. Now when we say in church 'Remember your baptism and be thankful' it will have special meaning for us.

Please continue to share Kate's webpage with anyone you wish, asking them to pray for her and for us, and for each precious child and family that we are holding vigil with in this wonderful gift of a hospital (despite the uncomfortable chairs, lack of Coke products, and funky cafeteria smell).

Blessings to you all on this the Lord's Day, Lesley

Saturday, June 28, 2008 4:01 PM CDT

Hey, if you haven't read the earlier updated today, read that for complete info. This is just an addition.

The nurses realized today that when they moved Kate or messed with her central line, her blood pressure dropped. Then there was leaking of blood and fluid out of it, and they did a doppler on it and realized that it was up against a valve in the vessel that was sending the meds back out, so she wasnt' getting all the dopamine she needed and her pressure was dropping.

There was a bit of dissent between the resident, the chief of radiology, and the nurses whether to shove it up higher with or without a flouroscope, or to just do one in the other leg, so Darryl and I tried to tactfully insist they call the ICU chief who is on call today (those of you laughing at the idea of me doing anything tactfully - I hear you). She came down and fixed it.

The radiologist was there because they ultrasounded her belly to see if she might have had a ruptured appendix. He said she did, which make a bit of sense thinking back over her complaints Friday of a sore tummy, which we of course ignored because she ate out, went to the ball park, and went swimming. But, the ICU doctor says she does not believe this is the case because the fluid in her belly is not pus as it would be with a ruptured appendix, but it just fluid from all the meds/hydration they are doing.

In any case, they would treat it just the same, and the only way to be sure is a CAT scan, and she is not well enough to be moved at this time.

Visiting hours were over at 2:30, so I haven't seen her in 1.5 hours, but she did open her eyes once before I left (but she's not focusing or recognizing/seeing things). I'm excited to see what she's like when I go back in 30 minutes. Darryl has gone to the hotel to sleep and shower and will come back for the night and I plan to go to the hotel and sleep, assuming Kate is still stable.

Thanks for all the posts, we love to read them and try to figure out who the people are whose names we don't recognize (give us a little hint!) and especially the different locations (worldwide!) where people are keeping us in their hearts and prayers.

Saturday, June 28, 2008 10:38 AM CDT

Morning. Normally on this day I do an update of the last 6 months about what our family has been doing, how Kate is healthwise, and add new pictures. It's been nice to do a twice a year update. Today is Kate's 7th Birthday.

The doctor's are very pleased with her situation. However, it's like if we measured her progress on a measuring stick, with 0" being when we came in, and 3' when we go home, we are about at 1/2", and getting her off the ventilator is at about 2'.

This morning at 6am her heartrate was down to about 160, her bp was at 115/60, her oxygen sat was 93, and they had turned her oxygen % down to 60 and the peep to 11.

At 8:30 her heartrate was back up a bit and her bp down, so they are going to increase the amount of albumen they give her to keep her venous pressure up. They increased her bp med so when I left it was back up to normal.

We listened in on her rounds, very interesting, feel sorry for the med student, but they were nice to him. They are reducing the frequency of checking her gasses, they are going to slowly wean down the ventilator (peep 12-14 then down to 10), her extremities are warmer, the electrolytes are stable but they still give her magnesium, calcium, phos(phates?phorus?), lipids, and they will add protein. Her blood sugar is 311 so they are giving her more insulin (this is what's left after they gave her so much glucose, which they have stopped now). They also tried a high dose of steroids to see if they would help but they didn't.

She might have a metabolic or mitochondrial condition, so we'll have to look into that later, but they have decided this is not related. She is septic (meaning blood infection) but none of her cultures have revealed anything. They might never know.

They are going to start TPN (nutrition in her IV) today. Her digestive system isn't ready for food yet.

The big plan for today is to take her off the paralysis medicine and keep her stable. So she'll be waking up, but still sedated, but I'm betting she'll be mmaaaaaaaaad!!! And we'll be glad to see it.

Dr. Sande came to rounds too and was kind enough to explain it all to our families.

Here's what she's on and some of you medical types might understand it all:
potassium chloride
saline
insulin
cisatracurium (the paralytic which they have stopped)
midazolam
dopamine
vancomyacin
epinephrine
calcium cl
fentanyl
milrinone

So, we will be here at least 2 weeks, and possibly on the ventilator that long, but hopefully not.

Please pray for: Kate to come out of the paralysis without too much agitation, that she will remain stable, that her respiratory system will strengthen and they will be able to reduce the ventilator support, and for times of good rest for Darryl and I and for all our family, particulary Wen, who is having fun playing ball today but is still worried about his sister. Pray for her many kind and intelligent doctors and her loving nurses. And for all the families in ICU.

Blessings to you all - we feel your love and support and prayers as we have always.

Lesley

Friday, June 27, 2008 4:45 PM CDT

Everyone, I don't know often I'll update, but I will do my best with the help of some friends.

I need to be brief, but the story is that Kate got sick on Sunday morning with fever, vomitting, a little diarrhea. I took her in to Dr. Cochran Monday a.m. and we went to the ER to get some fluids. Her CO2 level was low and she was acidotic (too much acid in her blood/body). We were admitted, got all the levels back up, and went home Wed a.m. Kate was still groggy and not eating well, but we thought she could recoup better at home. Thursday 3am she started throwing up again, so we took her back to the ER. Shortly after getting there she began vomitting, thrashing, being incoherant, etc. Her lactic acid level was high, her CO2 low, and her blood chemistry all wrong. They transferred her up to ICU at Hsv Hsp, where she continued to not improve. She started gurgling up foamy stuff in her mouth and nose, and they intebated her and put in a central line and arterial line and transferred her via helicopter to Children's ICU. She got here about 11:45 last night, very very sick. We stayed with her until about 3, then the doctors came and got us at 5 afraid that she might not live. Her blood pressure dropped very low but they did recover her.

She has seen every doctor here, I think, including all her old doctors who have been very helpful to the intensivist, as well as the cardiologist, a geneticist and a metabolic specialist. We have been working over the last 8 months to try to figure out the source of Kate's muscle weakness and lack of coordination, and have been fiddling with the idea of mitochondrial cystosis or a metabolic disorder. So we have been thinking that this might be related to a long chain fatty acid disorder, where someone will have lactic acidosis after a fast.

However, this afternoon the doctor had a long talk with Darryl and she told him that she believes this is a crazy, system, septic infection. But she's never run a fever and nothing cultures. But they doc said they have seen this situation recently. Let us pray it is an infection and not an underlying physiological condition.

She has been stable since 7am, and even improved a bit at the end of the day. Please pray that she will continue to make improvements, specifically to lower her heartrate, maintain her blood pressure, increase her oxygen saturation while the ventilator is decreasing its help to her. Pray that her blood chemistry levels off, that her fluid levels maintain evenly, that her CO2 levels stay high.

I will try to update as I can, please keep us in your prayers. Lesley

Wednesday, December 5, 2007 9:12 PM CST

Merry Christmas Everyone! I hope you are all healthy and happy. Please sign the guest book and let us hear from you.

We are busy doing all the same things that everyone else with a kindergartener and a middle schooler do: drive around and write checks.

Kate loves Kindergarten. She has had a bit of a time adjusting to the discipline, though, and for a few weeks she kept having to "pull a fish" when she got in trouble. For a pip squeak 30 pounder, her violations included: pushing someone off the monkey bars ("they were in my way"), shoving someone in the lunch line ("she wouldn't move"), and telling someone that she hated them ("she didn't believe I was 6").

Kate's still busy doing karate twice a week (she has a yellow belt now) and dance once a week. We also go to physical therapy monthly and try to do our home/gym exercises. She is also occasionally doing occupational therapy to increase her grip strength and overcome the tremor in her hands. She gets to do fun stuff like play with Silly Putty and draw up/shoot out water from syringes.

She's learning all her letters and numbers. I quizzed her today and the only letters she still doesn't know are Q, W, R, and U. She's a bit slower than her class, particularly if she has to do a lot of writing or cutting, but so far she seems to be doing well enough and we are please with that.

For Christmas Kate wants Butterscotch the Pony (no!), a dog in a carrier (yes), and "a Dora in a seashell" (yes). I'm sure she won't be disappointed as long as we can get her off that giant robotic horse idea.

Wen is well. It's been a bit bumpy ramping up the studying for middle school, but this seems to be a common malady amongst all our friends. He has lately come to see the value of studying. I'm sure no TV, no basketball, no computer, and no video games had nothing to do with that!

If his grades improve, Wen will be playing baseball this winter for our district's public middle school and we are very excited for him to finally get to play for a particular coach that we really like. Wen is always just a shade too old to play in the same league as this coach's son, but it worked out great for this team.

Darryl and I took Wen to Washington DC for Fall Break and we had a blast (Kate went to Disney with her grandparents and never missed us a bit). He's the perfect age for it. We ate around the world: American, Austrian, Italian, Chinese, Native American, Ethiopian, French, Spanish, Burmese, Greek/Lebanese, and Mexican. Wen impressed waiters all over town with his adventurous (sp?) eating, but he could stomach the fish balls at the Burmese restaurant!

Please keep us in your prayers, and continue to pray for Kate's health. She is eating much better since she is in the regimented and exhausting school environment, and she has put on 2 pounds since this summer! None of her pants from last year fit, either.

I'll be going back to a "real job" at Sparta sometime at the beginning of the year (it depends on when my security clearance comes through). It will be great to be back in program management, which I love, and to have some money, which I also love, but it will be a great adjustment for our whole family. Darryl and Wen are already practicing doing all the laundry.

Thank you to everyone for your love and your concern. Please pray for Kate's health, that God will give her a strong faith for the challenges of her life, and that He will use her life to glorify Himself (which is, of course, the whole purpose of anyone's life, but still, a good prayer!). God Bless You All!

ps. I ordered a lot of extra Christmas cards. If you'd like a photo of us, leave your address in the guest book or email me, I'd like to get rid of a few!

pps. Don't forget that donation to the DBA Foundation, Children's Hospital Stem Cell Unit, and Caring Bridge make great Christmas gifts to lots of people you don't even know!

Monday, August 20, 2007 5:32 PM CDT

Well it's way late, but Gloria Bink has reminded me that I never updated and I said I would.

Kate's checkup at Children's went fine. They did blood work, a cool EKG/ultrasound that was colored red or blue depending on the direction of blood flow, a chest x-ray, bone density test, and maybe more but I don't remember. I do remember that everything came out normal and we got out of there by 11am - a record.

Since then Kate has started Kindergarten, and she loves it. I woke up the first morning with her standing by my bed at 6:14 holding her plaid skirt and saying "How do I get this thing on?" I told her to go back to bed but she said she had to get ready.

She thinks she's very big now. I overheard her watching television, and the television said "Kids, get your parents help to..." and Kate said "I don't need any help, I'm in Kindergarten."

She got in trouble last week. Most kids are getting in trouble for talking when the teacher talks, being out of their seats, etc. Kate told some other little girl "I hate you." Apparantly the girl didn't believe that Kate was six. I explained that we don't tell our friends we hate them. Kate said "She's not my friend."

Keep us in your prayers, and the other DBA friends.

Thursday, June 28, 2007 9:14 PM CDT

Hi! Just a quick note to let you know that I will update the page on July 13 or thereabouts, because that's the day Kate has her yearly stem cell visit.

Her 6th birthday was today and we are happy to celebrate it. Her party is tomorrow, so we are dragging it out as much as we can. She told everyone in Gibson's today that it was her birthday and thereby collected $10, a bit more over her usual 50 cents or so she "earns" by paying people's bills for them.

Please be praying for Claire and Coleson, two DBA friends who are starting transplants this week. Their websites are:
http://www.caringbridge.org/cb/visit/clairecalhoun

http://www.caringbridge.org/la/coleson/

Monday, January 8, 2007 11:02 PM CST

Happy New Year to everyone!

First off, I should have done this before the end of the year, but I must mention that if you have extra money laying around and you'd like to put it to good use, please consider a donation to the Diamond Blackfan Anemia Foundation (you can find a link to their website near the bottom of this page). It's a tiny little foundation, but we learned at camp this summer how the money sent there makes a huge difference. The foundation grants money to doctors to do research and this beginning research then gives the doctors some promise they can show to the big money folks to get bigger grants to do more research. We were fortunate enough to hear first hand from five different doctors how their research is benefiting DBA patients and their families. Please give!

Well, on to Kate. Kate is doing very well, all things considered. Right now we are dealing mainly with her neurological issues. She's had these issues since the transplant, but it took us a while to figure out that it wasn't getting better, and then even longer to convince our doctors that we needed to do something. Kate has, according to Dr. McGraff, her neurologist, "toxic (or chemical) neuropathy" and damage to her cerebellum from the chemotherapy. The neuropathy means that she has damage to the nerve systems in her legs and hands, and the cerebellum damage means that she has problems getting her body to do all the things it needs to do in order to perform physical tasks like reaching out and touching something. We saw Dr. Avi Madden-Swain, the neurophysiologist, back in early November (I think) and she got us set up with a full physical and occupational therapy evaluation here in Huntsville at United Cerebral Palsy. They do more than just CP. In fact, when I called to get the appointment, I said “Now, I need to be clear that Kate doesn’t have CP” and the lady said “Oh yes, we treat 130 different diagnoses here” so I said “Well now it’s 131!”

So the results of the OT exam were that Kate has a tremor in her hands, which I didn’t notice, but her teacher and the neurologist did. We just thought she was ambidextrous, but as it turns out, her hands just get tired from trying to control the pen and she swaps hands. She doesn’t need more therapy for that, but we are working with a wiggle pen and blocks and sewing cards and beads and blocks to strengthen her grip. It could cause her some trouble in school, but like Scarlett says “I won’t think about that now, I’ll think about that tomorrow.”

As for the PT, Kate has weak stomach muscles and of course the neuropathy in her lower legs, particularly the front of her calves. So she went to a few PT sessions, and will go back once every 6 weeks for a while. The therapist gave us a set of exercises to do and we go to the gym and do them 3 times a week or so. Kate really thinks she’s something getting to work out at the gym. But she’s made great improvements in just these couple of months. She can already jump on one foot, something she’s never been able to do before. And at first, she couldn’t even jump over a flat ladder on the ground, and now she can jump over small hurdles. Darryl said that this weekend they were outside playing football and her running is much improved.

We went back and saw the neurologist on Wednesday, and he spent a good bit of time talking to me. When I saw him last we were so focused on the myasthenia gravis that I just didn’t care to try to tackle these other issues. But he explained them all very well and said that the fact that she’s improved so much so quickly is promising, but that we shouldn’t expect a full recovery. No biggy. It was interesting talking to him, because he said basically they just don’t know a lot about chemical neuropathy resulting from chemotherapy in children, because until recently most children just didn’t live long enough to be bothered by it.

Re. the myasthenia gravis, of course she doesn’t have it, and we have appointments with the eye doctor and the eye surgeon the first of March to get her droopy eyes fixed. And we are still trying to get Kate to gain some weight. She was doing really well after her first visit to the endocrinologist, but then she got a stomach bug and lost it all and has never gained any more. She still weights 30 pounds, and wears size 3T. I think she may be the only middle schooler still in a buckle-in car seat. I’ll have to go on ALL the field trips for years to come. Please pray for her appetite!

I think that’s all the health stuff! We have been keeping Kate very busy with physical activities to try to help her balance and coordination and also to train her to be an active person for her whole life. She continues to take dance and gymnastics. The balance beam is such a challenge to her, but her teacher encourages her very much and Kate says her new leotard with the stars helps her and so we can wear nothing else. She cheered for Wen’s football club this fall and really enjoyed that. The best thing we’ve found, though, thanks to my college roommate Kim’s roommate Elizabeth, is karate. On her advice, we started taking classes and Kate has never liked anything better. We took from Master Lee, a lovely, wonderful man who I met at the gym where I work. It was tiny little Kate and about 9 boys, some as old as 14, and Kate just held her own. I wish I had some pictures to show! Master Lee has a gift with children. Kate loves him and hugs on him when she sees him at the gym. Master Lee goes to Birmingham twice a week, to Baptist Hospital and to St. Vincent’s and performs acupuncture on people who are having surgery but can’t take anesthesia (he does it for all but open heart surgery but is training to do that). He was raised in an orphanage in Korea and made a movie in Korea, and movie producers brought him to America to make movies, but I’m not sure what happened there. There’s a DVD of him floating around but I haven’t snagged it yet. Anyway, unfortunately for us, Master Lee has been tapped to open an Oriental Medicine center at Emory in Atlanta, so he has had to stop teaching lessons. We started new lessons today at the YMCA – it’s 20 5 and 6 year olds and not nearly the same, but Kate likes it still so I think we’ll stick with it.

Kate likes T-ball best, though, and asks occasionally when she can play again.

She likes preschool and has warmed a bit to the idea of Kindergarten. In the past she has said she doesn’t want to go to school because she doesn’t want to work hard, but since her best friend will be going next year and she knows one of the teachers, she’s starting to think it will be OK. That teacher gave us a little tiny uniform shirt and shorts and Kate is excited about wearing them.

As for the rest of us, we carry on as usual. I am still working part time at the gym, and also part time for my aunt doing clerical work and bookkeeping and whatever else she will agree to pay me for! I am thinking about going back into engineering next year, but hoping for some windfall to make it not necessary! Darryl is our park’s baseball president for the year, and so far has only made everyone mad, so he must be doing something right.

Wen starting the wrestling season tonight, after a really nice break from football – the first time he’s played that, but definitely not the last. He loves fifth grade, and makes good grades when he remembers to study. We are starting to hear more about girls, but fortunately no one calls the house yet. He has a steady girl since forever, but apparently there’s a list of girls in waiting for when this one is on the outs.

(OK, I have to say it – Go Gators! Yeah Florida won the Nat’l Championship and AUBURN BEAT THEM!)

Got to go to bed. Thank you all for your continued prayers and interest in our family. Kate still needs your prayers, particularly for her growth and now her neurological problems. As we told people at camp this summer, a bone marrow transplant isn’t really a total solution; it’s just trading one set of problems for another. It’s just a matter of which problems you are willing to live with. God bless you and give you a happy 2007!

Thursday, September 14, 2006 5:52 PM CDT

Hi,

Well it's been a long and tiring day. Today we have seen the Stem Cell doctor, an endocrinologist, and two neurologist. We have been to the stem cell unit, the lab, X-ray, nuclear medicine, and the PICU. All in six and a half hours! (Plus 4 hours worth of driving).

Everything is great for Kate as far as the stem cell stuff goes, her labs are perfect.

She had a chest x-ray and bone density test as part of her regular work-up, we don't know any results of those.

We talked to an endocrinologist, Dr. Abdullati, who was very personable and showed us charts of Kate's growth and weight and BMI that showed that her height is low, but her weight and BMI (her weight in relation to her height) is really OK, and that we shouldn't be too worried about it and just continue to try to feed her as many calories as possible.

We saw two endocrinologists, Dr. somebody and Dr. Fu. It was quite funny to see a distinguished (sort of, if you can call someone younger than you that) specialists sit down on the floor and "race" your child to see who can stand up first. They did a lot of checking and "playing" with Kate to figure out what's going on with her droopy eyes. If you missed my last post, check out the journal history. They said, as we expected, that there wasn't really anything indicating myesthenia gravis other than the eyes. Also they said that she does show midline something or another problems, and probably neuropathy, meaning that the part of her brain that deals with her midline movements isn't working all that well, probably a side effect of the chemo (more on that later). They decided to take labs and do a test where they put a medicine into Kate's IV (she had to have TWO sticks and did very well) to stimulate the receptors that myesthenia gravis affects. If her eyes suddenly popped open, that would mean she had MG. But they didn't. So we are waiting 1 week for results of the antibody test they did to completely rule it out. If those come back negative, we'll proceed with the corrective surgery.

We didn't see the neuropsychologist today as she works in Huntsville on Thursdays, but that means we will get to see her another time here in town. At that session is when we'll see what we can do about her balance/midline issues. We will wait for Dr. Sande to set that appt up for us.

I also got to drop off for our hemotologist, Dr. Watts, who we don't have to see anymore, a packet of handouts and articles and pamphlets from our trip to Camp Sunshine. And I also told him how much we appreciate the excellent care we've gotten and how we realized that. He sent me an email this afternoon and thanked me and he said he hadn't heard of camp, so I hope that we will be able to see more patients from Alabama going to Maine.

Thank you all for your prayers, please continue them!

Tuesday, August 29, 2006 6:44 PM CDT

Sorry for the late update, but I’ve been trying to hold out until Kate’s yearly stem cell appointment, but since that has been pushed back into September now, I’ll go ahead and update. I have added some extra pictures on the journal space, so I hope you enjoy that. If anyone has a history of the Kate Updates that I sent via email before we discovered Caring Bridge, I would really love to get those, I didn’t save them and now I regret that.

We’ve had an interesting and busy time since Christmas. This winter we have tried to spend as much time as we can outdoors, being an “active” family. It’s important for Kate to get exercise and will continue to be important as she grows, but organized sports are going to be difficult for her. So we’ve been out hiking most every Sunday afternoon. We’ve tried to make it more fun by geo-caching. This is where someone hides a cache (usually just a box or bag or such with a log book and maybe some trinkets). They then go on a website and post the GPS coordinates of their cache, and you get that info off the website and try to find it with your GPS. You sign the log book, take something, leave something. Kind of a sophisticated hide and seek. Mostly Kate rides in the backpack carrier, but she frequently walks. One time we went out hiking with the Sierra Club and they got lost! Ha!

Kate’s dance recital was a hoot. She’s been practicing it for months in the dance room in front of a mirror. The day of the recital was the first time she’d done it on the stage. I realized quickly that she didn’t know the dance, she’d just been copying it by watching others. So she spent the whole time frowning and looking sideways and doing each motion/step about 2 motions behind everyone else. But she looked cute in her elephant costume. Next year I’ll video the practice and we’ll learn it!

Kate played T-ball this spring also and she loved it. She asks all the time when will it be time to play again. She was actually one of the best hitters on the team, and she did very well catching the ball. Her only shortcoming is her running, which was also what made soccer so hard. Her little legs are so short, and she’s rather uncoordinated, so getting to first base was a real accomplishment. Fortunately for her, most kids this age can’t catch or throw, or she never would have made it to base. As it was I think she might have been our only player who ever got thrown out at first. Darryl was her coach and I think he enjoyed getting back into softball (for those of you who don’t know, I met Darryl when he was my softball coach and he coached at our local park for years before Wen was born).

Speaking of Darryl, he also helped coach Wen’s baseball team, both the regular season and the all-stars. Apparently he did a pretty good job because someone talked him into running for Baseball President at the park and he ran unopposed and so won. Wen got to play catcher most all year, and this year he pitched a bit. He’s not a fast pitcher, but he’s extremely accurate. So if our fielders can back him up, he can do really well. He’s playing football now, his first time.

This summer we went to the beach twice and Kate discovered that she loves to float. She has, in the past, refused to learn to swim and even been very afraid of the water, but the first day we were at the beach in May she walked her little self out in the water (wearing floaties on her arms and holding a swim ring) and basically didn’t come back in until we left to go back to Huntsville. All the adults just had to take turns standing out there with her. Fortunately when we went in May the water was crystal clear and beautiful. We saw rays, fish, hermit crabs, blue crabs, and more right where we were staying. In July when we went the water was cloudy and there was lots of seaweed. Thankfully we were with friends who had kids, so she had other kids to keep her distracted when we didn’t want to float in the seaweed.

The best part of the summer was that we got to go to DBA Camp at Camp Sunshine in Casco, Maine. What a great place. Camp was free to us, compliments of different sponsoring groups and people (our sponsor was KOA Camps). We did have to get there, though, so we used every frequent flyer mile we had and it was worth it. Originally the land was part of a “resort” on Lake Casco. The owners created Camp Sunshine as a camp for families with children with life-threatening illnesses. Every two years they have a DBA camp. We expected, from the website, to have lots of free time and time to spend together as a family. HA HA HA. The kids had a great time, it was like day camp for Wen with a climbing wall, swimming, boating, bass fishing, a challenge course, crafts, games, etc. Kate’s was more like daycare, but she enjoyed it and next time we go she’ll be of the day camp age. The adults spent all day every day in sessions with doctors! We had lectures from Drs. Lipton and Vlachos from Schneider Children’s Hospital on Long Island (these are the big-time DBA docs who we took Kate to see), Dr. Blanche Alter of the National Cancer Institute, Dr. Hanna Gazda from Boston Children’s, and two other doctors, one from Johns Hopkins and one from University of Louisville. They talked about DBA and hematology in general, treatment options, direction of research, the DBA registry, the genetics of DBA, cancer in DBA/bone marrow failures, and iron overload management. Even though it might seem that some of it wouldn’t apply to us, we learned something in every single session. What we got out of the whole week mostly, though, was the realization of how blessed we are to be able to have had a transplant that went so well, and also to have gotten such excellent health care from every one of our doctors, from the pediatrician to the hematologist to the stem cell docs. Not every family was nearly so lucky this way. Also several things that we have worried and wondered about, questions about “did we make the right choice?” were laid to rest. For example, right after Kate’s transplant was when they did the first “mini” transplant (and Mark came to camp for a visit), and I’ve wondered if perhaps we did our transplant too early. But we learned two things: transplants done before age 10 are hugely more successful than those done later, and also that “mini” transplants can only be done when a regular transplant isn’t an option because they have other problems associated with them. It’s good to know that we made the right decisions for our daughter, and not to second-guess ourselves.

We met three other families who’d had transplants, and Wen got to meet three other donors (two were teenagers and one was just three I think). They all decided that getting the pressure bandage off was the worst part of the whole donation. We got to meet Kylie and Coleson and lots of other kids and families who we feel like we know so well from the Internet but haven’t ever met in person. There was a family there from LA, from North Dakota, from Miami, from near Kingsport, TN, and we met a family from Nashville, just 1.5 hours from us! The adults did have some fun too, including these silly Love Cup games and a night for just parents with a delicious dinner and karaoke. I think I may have stunned the crowd with my rather accurate portrayal of Tammy Wynette.

Now Kate has started school (pre-K) and gymnastics and is also cheerleading for her brother’s Pop Warner football group. She loves it so far. After Labor Day we’ll start dance again. She’s usually very sweet, sometimes rather rotten. She’s still the mayor of Gibson’s BBQ and I suppose next year when she goes to kindergarten we’ll have to get up really early to get there before school starts.

OK, on to the medical stuff. The good stuff is that Kate feels great, she’s active and energetic and having a great time being normal. Her skin looks FANTASTIC. Even though she’s been to the beach twice this summer and has a tan, her spots are barely noticeable. We got 15 minutes at camp with Drs. Lipton or Vlachos, so when we talked with Dr. Vlachos she seemed very positive that her skin would eventually look normal.

The so-so stuff is her growth. Last November Dr. Cochran decided that we needed to do something about it. Kate is small, but the problem was that she wasn’t even growing on her own curve. So Dr. Cochran put her on Periactin, an appetite stimulant, which has helped. We checked back up in 6 months, and she had grown 1 inch, perfect, but hadn’t put on any weight at all. So she sent us to see Dr. Aftab-Guy at Vanderbilt, an endocrinologist. She examined Kate and also did a bone age study (hand x-ray). According to her, Kate still has plenty of time to catch up on her growth, and it’s just a very very very slow process to get well after a transplant. Three years apparently isn’t too long to wait. So she told us to start feeding Kate more fat, more junk food. Yikes. This is so against my nature! Darryl and I went to the grocery and started checking labels for the stuff with the MOST fat, with the MOST calories (did you know that wasabi peas have 420 calories per OUNCE – too bad she won’t eat them). She’s eating a lot of pizza these days. Then at camp Dr. Vlachos confirmed this, and said to stop feeding her so many vegetables (ah!). Whatever she’ll eat, she gets. Unfortunately she doesn’t like ice cream, but we are drinking Ensure Extra “coffee” and we put butter on everything. She has gained from 28 pounds last time we saw Dr. Cochran to 31 pounds last week.

The maybe not-so-good stuff is that we saw Kate’s eye doctor in June, she and I decided that it was time to do something about Kate’s droopy eyelids. Dr. Lewis diagnosed this as “bilateral ptosis” which is when the eyelids droop. She said it was a nerve disconnect and no way to know if it was connected to the transplant or not. The fix is surgery to create a sling for the eyelids from connective tissue taken from the leg. We had an appointment with Dr. Callahan on August 1st. Then at camp, I have already gone over my time with Dr. Vlachos when I mention “oh by the way…pstosis” and Dr. Vlachos gets a look that I didn’t like. She called Dr. Lipton over and they had a look and said that it could be myasthenia gravis, which is a muscle problem caused by an immune system imbalance and it could happen after transplant, and not show the classical symptoms, which Kate has NONE of (muscle weakness in neck, extreme tiredness). Dr. Vlachos said we should have a neurologist see her and rule this out (Darryl says he remembers her saying that it wouldn’t be a tumor since it was bilateral). So I cancelled the surgery appointment and called Rookie and asked him to set all that up. I talked to Dr. Sande about it and she agreed that we should see a neurologist first as if it is myasthenia gravis, surgery wouldn’t fix the problem. So we are waiting to get an appointment in Birmingham, more on that when we know.

Also I’m concerned about Kate’s gross motor skills, particularly her balance. It’s very poor. It improved last year when we enrolled her in dance and gymnastics, but I think lately it’s worse and not better. So we have an appointment to see a neuropsychologist on September 14th, the same day as our stem cell appointment. I will update the website again after that.

On August 6th, the third anniversary of Kate’s transplant, we had a blood drive and bone marrow donor drive to celebrate. We got a good turnout. We learned at camp about the DBA Foundation and how, even though it’s a small foundation with small amounts of money to give, it can help the doctors get a big grant. The foundation will fund a doctor to do enough research to show some promise, so that he/she can then apply for a large grant and get the money to do studies. Dr. Lipton has declared 2006 “The Year of the Ribosome” and so we all now know all there is to know about ribosomes (but please don’t ask us) because of the promise the research shows. So if you have money you would like to donate, consider giving it to the DBA Foundation. It really makes a difference.

Watch this site for more info after September 14th. Thank you all for your continued interest in and prayers for our family. I don’t think we’ll ever not need them, and certainly never not want them!

Blessings, Lesley

Us at Camp Sunshine

Chicken Little Playing T-Ball



At the Front Doors of Camp Sunshine



Helping Brother Sing in the Talent Show at Camp Sunshine



2 Miracles and 2 Heros - Kate and Kylie, Wen and Jordie







Kate and Darryl on July 4th

Saturday, July 22, 2006 7:39 AM CDT

New Update Coming Soon!

We have just returned home from DBA Camp at Camp Sunshine in Casco, Maine and as soon as I can digest it and type it I'll update it!

New (and more) pictures coming at that time too.



Love Lesley

Monday, December 12, 2005 1:51 PM CST

Merry Christmas! Feliz Navidad, or as Kate says, "Danise na-ne-na!"

I hope this letter finds everyone that we know happy and healthy. We have certainly enjoyed more than our share of miracles of healing among our friends this year and we are thankful to the Great Physician for our blessings.

But first, a bit of urgent and upsetting news. The Diamond Blackfan Anemia Foundation is running out of money to fund the research that encourages so many of our DBA families. The DBA Fund in the past has funded the DBA Registry, a vital source of information about who has DBA, where they live, how they are being treated, etc. Doctors need this information to decide what treatment options yield the best results, and also to give information about what might cause DBA. The Foundation has also funded the research of several doctors who have committed their lives to finding the causes of DBA and finding a cure for it. DBA is one of many "orphan" disease, and we do not receive money from the government or large corporations and groups. Every penny given is appreciated and vital to the cause.

The Foundation has asked us all to help them raise $50,000 by December 31 of this year, and $500,000 by 12/1/06. You can be a part of this by sending your tax deductible donation to me (write your check to the DBA Foundation) and I will collect them all and send them on in Kate's honor, or you can send a donation directly to the Foundation at 20 Tracy Lane, Seneca, NY, 14224. Many companies will match your charitable donation, so check into that option. You can get more information on the Foundation and check the progress of the money at www.dbafoundation.org.

I know lots of people ask for your money at this time of year, but I am asking too. We are very fortunate to be able to cure Kate via stem cell transplant, but very very few other DBA patients have this option. Almost all DBA patients are living with steroids and their side effects, or transfusions and chelation and those side effects.

One bit of good news before I go back into an update on Kate - the FDA has approved an oral chelator! That's such good news for all the folks out there who have to stick themselves with a needle every night and live with a pump 12 hours a day.

OK, back to Kate. A lot has gone on since I last wrote in July or August. Kate had her check up at the Stem Cell Unit and is doing very well. The only thing that was a bit off was her phosphorus level - low. Since the grown and health of her bones needs to be monitored closely due to the side effects of the chemotherapy, and since I was diagnosed with advanced osteoporosis at age 38, they plan to enroll her in a bone mass study at Children's. I haven't heard anything more about that and need to check back with them. It was good to see our friends at the unit again, and just wish we could see more of them than the few on shift when we are there.

Next Kate went to see her eye doctor, Dr. Lewis. Last year her eyes were fine, just a little astigmatism, but this year one eye had quite a lot of astigmatism, so Dr. Lewis has put her in glasses. Kate really likes to wear them, she says she sees better. Since she has always worn sunglasses outside, wearing the glasses was no big deal for her. We have had to have them straightened out three times and one lense replaced since September, though!

Kate has also seen her dermatologist, and her skin really looked great all summer this year. She reminds us to put the sunscreen on every day. I bet she'll be the youngest looking woman anyone knows as she ages, since she'll have had the benefit of SPF 45 every day since she was a baby!

Lastly, Kate had her 4 year old appointment with the pediatrician, Dr. Cochran. She's very healthy, but hasn't grown at all, either in height or size, in the last year. They track this at the stem cell unit also, but they didn't say anything about it, which Dr. Cochran thought was unusual. It's not surprising that Kate hasn't grown, she basically eats breakfast (at Gibsons every day - one egg, one biscuit, a bowl of gravy) and nothing else all day. Dr. Cochran put Kate on an allergy medicine that stimulates your appetite (oh that I needed such a medicine!!). When we were in the pharmacy getting it filled, Kate asked my "What's my 'rescription' for?" I said it was a medicine to make you hungry so you'll eat more and grow more. Kate cut her eyes across at me and said "It won't work." Well despite Miss Priss's best intentions, it does work, and she ate 6 fish sticks for dinner two nights later. Dr. Cochran said that if she doesn't show good growth in 6 months we are off to see an endocrinologist (hormone doctor) at Vanderbilt. So keep that in your prayers.

Last week I had Kate evaluated by the school system for development delays. We observe that she has poor balance, can't hop on one foot, is ackward running, etc. She seems fine when she's with 3 year olds (we have held her back and she's in a 3 year old class and on track for Kindergarten whe she's 6) she fits in, but with 4/5 year olds in soccer and gymnastics, she doesn't. The school system will evaluate you for free and if you fall below 78f whatever the measure is they will provide free therapy. Kate is developmentally delayed, but not low enough for therapy. The therapist said she didn't believe Kate needed private therapy, that having her in gymnastics and dance and soccer would do the trick, as long as we see her improving, which we do very much. They asked me if I felt she had any speech problems, and of course I said no. The speech therapist said she had to do a cursory exam anyway, and said that when she got up to where Kate scored as a 6 year old she just quit.

Otherwise Kate is great. She's enjoying her Mother's Day Out class and making friends there. She's had a little girl come home with her to play one day. Kate is also taking gymnastics class and she likes that but pretends that she doesn't. I see a lot of improvement in her balance and strength since she started. She's just so very tiny (she still wears size 2T clothes and just hit 30lb this week) that she has a hard time keeping up or using the same equipment. She's also taking a dance class at a local church. It's really more of a movement class, and they do some book reading and pretending too. It's just perfect for her and she's having fun doing it. Kate's also taking violin and doing very well at it. She likes it, especially now that Mom has been kicked out of the classroom and sits in the hallway.

Kate's favorite things to do are to ride her bike, play with her friends, watch Elf and Frosty the Snowman. She has asked Santa for a pink rolling backpack, a Tinkerbell sleeping bag (she switched that to Dora a couple of weeks ago and had to be steered back to Tinkerbell), and a pink scooter with a pink basket on the front. She's terrified of Santa but asked me if I'd sit on his lap and tell him what she wants.

Wen is doing very well too, and making very good grades. He even has an A in spelling! We had one little bullying issue that we finally resolved (with the principle's secret blessing) with Wen taking down the bully (in the library in front of two teachers - we forgot to mention that this sort of thing should be done in the locker room or on the playground). He's continuing to play the guitar very well, and playing all his sports - soccer, baseball, wrestling. He's a Webelos 1 scout this year.

Darryl and I have both turned 40 since I wrote last. Darryl and Wen went to Space Camp together for Darryl's present, and for mine, Darryl and I went to New York and saw Spamalot. We stayed in Brooklyn at an Orthodox Jewish bread and breakfast. Quite different from our other New York trips and I highly recommend it. We stayed in Brooklyn the whole weekend, except for the play. We went to the Japanese garden and to Coney Island.

Darryl started a new job in October at Torch Technologies. It was like tearing off an arm to leave Amtec - the people there love us like family and we feel the same way. They have been so good to us through so much and for so long. But it was time for Darryl to move on and we are fortunate to find another Christian-run small corporation where he can continue his database work for the Army.

All four of us are going to Bible Study Fellowship and studying Genesis, and getting a lot out of it. We are particularly proud of Wen, who stands up for what he knows to be right among his friends, and even spent his Christmas money on Toys for Tots.

As for our friends, ALL our DBA friends, including Kylie are just doing terrific. Our friend Tony with the brain tumor is a medical miracle. Now our friend Randy, who we go to church with and who coaches Wen in wrestling, is dealing with a spinal tumor and the effects of that, but fortunately it isn't malignant as they were told to expect.

I'm sure when I finish this page I'll think of lots of things I forgot to put in. So just email me if I forgot something. Thanks to everyone to continues to pray for us every day. We cherish your thoughts and prayers and love you very much. Merry Christmas and best wishes for a Happy and Blessed 2006.

Friday, July 1, 2005 11:32 AM CDT

Hi Everyone,

I know it’s been since November that I updated the page, but honestly, we’ve just had nothing but “normal life” to report, and what a blessing that is!

We have just been enjoying our whirlwind lives, doing all the normal kid stuff. Now that school is out, we’ve already gone to the beach, had Vacation Bible School (more on that later), sent Wen off to Boy Scout Camp and Kate to grandparents for a week, had non-stop baseball practice and tournaments (finally over, thankfully), and have sent the kids off to grandparents again. Wen has just 3 weeks left in his summer, before he leaves for a 2 week trip out west with my parents, so we are trying to cram everything into three weeks. Summer always seems so long in May, then suddenly one day you wake up and realize all the stuff you haven’t done yet! Wen was selected for one of our park’s All-Star teams, and had baseball practice 6 days (or more) a week. We’ve just done baseball for the last few weeks. Now we are trying to squeeze in grandparents, swimming, trips to local water parks and other attractions, movie matinees, and a trip to Atlanta to see friends and the Fernbank.

Let’s see what all tidbits of info I can remember. I’m always thinking of funny things Kate has done that I can put on the webpage, but actually remembering then when I sit down to write is another thing.

First of all, Kate turned 4 on Tuesday. We had her birthday party at the same time and place as Wen’s (what a coincidence!). That worked out well because she’s been wanting to have a party, but she doesn’t really have enough friends for one. They went to Blacklight Golf (indoor, glow in the dark putt putt) and she had a good time. She totally ignored all the friends she invited, wouldn’t say thank you for her gifts, and otherwise acted like a still-3-year-old. But that’s my fault, because I put “Happy 3rd Birthday” on her cake and only put 3 candles on it. I don’t want her to grow up! But on the other hand, isn’t that what this whole ordeal has been about – being sure she grows up? I have to keep that in mind! Once Kate had her party, she decided she was 4, and there was no other birthday after that. Until the actual day of her birthday, when everyone at Gibson’s (yes, she’s still there 6 days a week) and at the gym and at the ball park was telling her Happy Birthday. Then she starting asking when we were going to Blacklight Golf for her party and was so-and-so going to be there!

Kate took swimming lessons at a local public pool. It went shockingly, amazingly wonderful the first lesson. She was the best one there, I couldn’t believe it. Then when they got some free play time in the shallow end at the end of the lesson, the instructor let go of her where it was too deep, she went under, and no one saw her for a moment. Not even long enough for me to jump up out of my seat, but long enough to convince Kate that she should never, ever again participate in any way in swimming lessons. So for the rest of the term she just sat on the side and screamed. We finally quit the lessons. Then suddenly a couple of weeks ago, she decided that maybe swimming could be fun. Now she jumps off the side of the pool to me and she lets me let go of her briefly. That’s real progress, I was afraid she’d never leave the baby pool (and even then she held onto the sides).

Oh, VBS. Kate LOVED VBS. In a drastic change from last year, when she wouldn’t leave my side and spent her days with the second graders, this year she trotted herself off to her class every day, and if I showed up she said “Go away.” Our theme was about Jerusalem during Holy Week, and she learned to say “yarmulke” (that little skull cap) among other things. She tried goat cheese, which she didn't like (good, more for me!) and she reminds me weekly "I tried that chese at B-cation Biba Kool and I didn't like it." James and John came running into her room to hide from the Roman Soldier, and when the threatening soldier came in to ask if anyone had seen two of Jesus’ disciples, Kate volunteered “They’re behind the door!” My little narc!

Kate is obsessed with death. She went to several funerals this winter/spring, one where the closed the casket in the funeral. Now we talk about it every day and she prays for the dead people every night. She won’t pray for anyone else but them. Her Aunt Nancy gave her $10 for her birthday. Kate looked at the picture and said “I thought Mama Lu died.” (this is her great-grandmother whose funeral she went to). I explained that it was Alexander Hamilton, first Secretary of the Treasury. She said “Did he die too?” “Yes.” “Did they put him in a box and close the lid too?”

Kate is also obsessed with her orange flip flops and her “boy socks”. The orange flip flops are worn every day, even to church. The only good thing about them is that if I let her wear them, then I can pick out the clothes without too much fuss. Then she found the Boy Socks in a drawer. They were Wen’s socks, red and navy with trucks on them. They are size about 9 months. She also wants to wear them every day with her “Glues Clues” (Blues Clues) tennis shoes. At least they give me a break from the flip flops.

Kate’s favorite things to do are play with her brother and his friends (they LOVE that), swing (but never at our own house, always across the street), ride her bike, play with the two boys in the neighborhood, spend the night at grandparents’, and recently do the Slip ‘n Slide. She doesn’t watch much TV but she does like “Doda”, Dora the Explorer. She says “p-tause” for because. I wish I could think of more funny things she says, but if I remember them I’ll update the page.

Well it’s about to storm and I need to go to the gym, I’ll put this out there in case anyone reads it and get back in here and update it again later.

Oooh, we’ve had a recent miracle. Kylie Jae Monica in NJ had a “mini” sort of transplant. It looked as if it failed (no engraftment) and they would have to risk a full transplant. BUT suddenly she has a red cell count! They gave her Procrit shots to boost any of her sister’s cells that might still be there and it worked! Keep praying for her. Also please remember the Meadowcroft family, their 2 1/2 year old Caleb is going in for a transplant in the next couple of weeks. And my cousin Tommy Balentine who is in Tikrit, Iraq. Our friend Tony Goodloe who had a brian tumor and lung cancer is doing FANTASTIC. You guys are a good bunch of prayer warriors, keep it up!

Love to you all, Lesley
Ps. We’ll go back for Kate’s 2 year check up in August, I’ll let you all know something then.

Wednesday, November 10, 2004 1:33 PM CST

Hi everyone

We are doing great, just doing all the normal 3 year old and 9 year old stuff.

Kate is really having fun at Mother's Day Out with "Miss Marfa and Miss Ma'gimia" (Martha and Virginia). Every day she asks me if it's a school day. If I say yes, then she tells me all morning that she doesn't want to go to school, and I just say OK. When she's done with breakfast (at Gibson's, of course, 6 days a week) she'll suddenly say "I weddy go to 'cool" and off we go. She's very sly. She came and got in bed with us about 1 a.m. Monday morning. That day Darryl asked her why she came and got in our bed and she said "I just do dat sometimes." Then after Darryl walked out of the room she said "I might do it again." She talks CONSTANTLY about HoHo and when he's coming, is he coming today, is he coming after nap time, where is he going to sit, what's he going to eat, is Daddy going to sit in his lap. She's been processing it all and declared "I yuv HoHo but I not goin' to sit in he [she uses "he" for his, him, her, and hers] yap [lap]." Fine with me.

Wen is having fun in 3rd grade, once we got the routine of all the extra work down. He made the A/B honor roll and also played his guitar extremely well at both our church service a couple of weeks ago and his school's mass. He had a Halloween party for his class which we hear was THE party of the year. We went to the Tennessee and the Arkansas games (vs. Auburn, of course) and he has enjoyed that very much.

Kate fell in the shower Sunday morning and busted her chin on the seat thingy in there. She got four stitches. This is her eight set of stitches (two each from the port and the central line and three skin biopsies) but her first accidental ones. She did great until the nurse had to hold her head for the stitches then she screamed "I can't hear!!" for a while. Eventually she calmed down and was very good. Now she's quite proud of them.

She's still quite tiny - just a hair under 30 pounds and just now wearing 24 month clothes. But she's growing on her curve and doing fine developmentally so no worries there. She has her last set of immunizations the end of this month and she'll be completely done and we won't think about doctors again until August. We all got our flu shots fortunately.

Hope everyone has a wonderful Thanksgiving and Christmas. God bless us everyone! Lesley

Thursday, August 12, 2004 3:42 PM CDT

Hi, just wanted to let everyone know that Kate had her appointment with Dr. Lewis, the pediatric opthamologist and everything was just A-OK. We are going to go back next year just to follow up.

Dr. Lewis is about my size, but skinnier. She had red curly hair. She was just exactly like a tiny, red headed Bette Midler, and acted like her too. She had on a tight black pantsuit with a leopard belt and animal print shoes. She played it up big with Kate and Kate cooperated beautifully the whole time. Dr. Lewis had moving toys in her office that made Kate's eye do whatever they were supposed to do, and a TV with the Jetsons running. Other than a little bit of crying when the nurse put the dialating drops in, Kate was a total angel.

On the way home Kate wanted to play her "Game Coob" (Wen's old off-case Gameboy with some game in it she can't even play) and she stared at it, moved it back and forth and said "I tan't see it!!"

Kate also started "cool" (school) on Tuesday and loves it. I didn't tell her she missed it today!

My Mother in Law's body scan/CAT scan results came back completely cancer free! We are very excited. Even after her last two rounds of chemo it wasn't clear like this. We are looking forward to seeing her recover and plan to get away to North Carolina with the entire Burnette family for a long weekend soon. Keep Kylie in New Jersey in your prayers, her transplant is set for August 16th.

I can't imagine what more I'm going to have to update everyone about Kate, but I can't bear to actually type outloud the thought that you don't have to check the website anymore. I finally told the church they could take her off the prayer list. That seemed like a big step. I haven't told Wen's school yet, though and she continues to show up on the prayer list in each Wednesday newsletter. I suppose I'll have to do it soon.

So, I'll just say that if anyone wants updates or new pictures, email me anytime and I'll update the website for you. Otherwise I'll just try to update it occasionally and put new pictures out. I can't bear the thought of giving up all you dear people and your prayers, which have sustained us and continue to maintain us.

God Bless you all, we love you,
Darryl, Lesley, Kate and Wen

Friday, August 6, 2004 3:08 PM CDT

Hello friends,

Today is Day 356, the one year anniversary of Kate’s bone marrow transplant. It has been a year out of time and space, a year out of our lives which as, in return, provided Kate with a lifetime to live as a normal person. Or at least as normal as you can get coming from our families!

When we reflect back on this year, it seems to have gone by so quickly in some respects, and so slowly in others. It seems like a long, long lifetime ago when we had to sit all day in hematology and get blood transfusions, or go to the pediatrician every week for blood draws and count checks. But it seems like just yesterday that we were checking into the hospital for the transplant. We are having nice cool weather this week (82 degrees, no haze, brisk breeze) and it reminds me of all those days we spent in the apartment in Birmingham. As I like to remember it, all we had to do all day was walk and find ways to fill our time. But then when I really think about it, I remember all the doses of medicine, the throwing up, the daily trips to the outpatient clinic, constantly trying to get food down Kate, and trying to keep everything and everybody germ-free. I see that my selective memory is working just fine and dandy.

Kate herself has changed so much this year. Probably no more than most kids change from 2 to 3 years of age, but most don’t have a change in hair color! She is sweet and happy almost all the time. She is very much looking forward to starting “school” next week – Mother’s Day Out for two mornings. I think she really needs it too – this year of isolation has spoiled her and she needs to learn how to play with friends her own age. We stopped into her school last week to turn in her immunization card and by chance got to see her room and meet her teacher. Kate talks about school quite a lot, and when we drive by she says “Dat’s my ‘cool!” When we talk about Wen starting school she always reminds us that she is going also.

Wen has certainly changed a lot physically – he’s got a lot fewer teeth and suddenly his clothes don’t fit anymore. His face seems to have lost all that baby look and he’s a big kid now. He just got home from a two week trip to Colorado and Cheyenne, Wyoming and has decided to become a calf roper when he grows up. Kate missed him so much and every day she’d say “It’s time to pick up Brudda” or “After my nap it’s time to pick up Brudda”.

Kate had her 1 year follow-up at the Stem Cell Unit yesterday. She had blood drawn and an X-ray of her hand taken for a bone-age determination. She saw an endocrinologist (hormone doc) who will follow up on her each year. They had us scheduled for a cardiology check also but decided against it. We saw the new stem cell doctor, Dr. Kharbandah. She very young! We liked her, she was very nice. Dr. Sande is on vacation. I’m sure she’s glad not to be the only doctor up there anymore. As usually everything is just great. Kate’s ferratin level was up to about 1000, from the 850 it was when we saw Dr. Watts in hematology in June. Ferratin levels go up and down easily, so the doctor decided that we would just recheck it in two months and see what it’s doing then. 1000 is the mark where they would want to treat it by chelating with desferral, which is what we used to do until Dr. Watts took us off it in June. Even now Kate will occasionally say, walking up the stairs to bed, “I don’t have to do my boo-boo anymore!” So it would be a real disappointment to us to start it again. Our pediatrician will do the ferratin check in two months when we get the next set of immunizations, so we won’t be back to the stem cell unit for another year.

When Kate had her last visit to the pediatrician they did a well child exam also, including vision and hearing screening. One of Kate’s eyes didn’t measure right in the test. It might have just been because she wouldn’t look directly at the machine, or she might have something like lazy eye or poor vision in that eye. So Dr. Cochran referred us to Dr. Lewis at the Eye Institute in Birmingham. He’s a pediatric opthamologist. We have an appointment on the 12th. I’ll update the website next week.

Again, I can’t say thanks enough to everyone for their prayers, cards, gifts, money, food, well wishes, an checks of the website (26,000!). My mother in law Faye has completed her treatments and we are eagerly awaiting her scan results today. Our friend Tony has completed his treatments and is doing very well. I found out that Jorrit in the Netherlands is recovering from his second transplant, still weak but getting better. Please pray for the Monica family. Kylie is the 4 year old with DBA who started a transplant then her liver reacted. They have had to wait while she recovers from Epstein-Barr Virus so that they can do a mini-transplant which uses less chemo but is not as successful. Just as they were getting ready for it, she now has infections in her ports. She will be hospitalized now for the duration to keep her healthy until they can transplant her. This family has 10 children and has been through so much! They are in the best of hands with Dr. Lipton, the doctor we saw in New York.

Blessings for everyone, especially those starting back to school next week! Lesley

Friday, June 18, 2004 2:05 PM CDT

Hi everyone,

I hear it's time to update the page! We've been so busy enjoying our freedom that I haven't thought about it. I did notice that the last update said we were "unofficially" release from Stem Cell, that should have said officially.

Kate has been feeling much better over the last three weeks. Almost immediately after we stopped all the medicines and started getting out of the house, she seemed to be in an ill mood most all the time. It is common for stem cell patients to be clinically depressed, and possible and common even for small children. So maybe that was it, or maybe it was the sudden change in our lifestyle, but in any case, she is herself again. She has been enjoying the little bit of summer we've had so far. We went to the beach last week and she "swam" in all the pools and in the ocean too.

Kate has seen Dr. Cochran to get her first series of immunizations, and we go back mid-July for more. She now has a serious fear of doctors and particularly Dr. Cochran! We took her to the dentist today and although she would open her mouth wide and talk about the big chair before we got there, she clammed up and refused to open her lips and screamed (cute trick with closed lips) once we got there.

Yesterday we went to Children's to see Dr. Watts, our hematologist, to keep up with her iron counts and her chelation. While we didn't get her ferratin counts back before we left, he did agree that we could stop doing the chelation! We are thrilled - no more boo boos every night. Now we just have to finish immunizations and go back to Stem Cell once a year. We will go back around August 6th, and I'll update the website after that.

The only ongoing issue we have is Kate's skin. The graft vs. host disease damaged it, and we just don't know what effect that will have. At the beach last week I kept 50 sunblock on her, plus a safari-style hat and glasses and a long sleeved, high necked sunblock shirt. Her legs tanned beautifully, with no splotching. Her neck is tanned but splotchy, and her arms tanned where the undamaged parts were and the damaged parts got a little red but are fine now. I think it was from the heat and not the sun. I keep sunscreen on her every day.

Kate will be three on June 28. She's still so tiny - just under 27 pounds and just now wearing 24 month sized clothes. When she says and does things that an almost-three year old should do, it freaks me out sometimes because she's so tiny. But she is a normal little girl and acts like it, for better and sometimes for worse.

Well, off to cook and clean and decorate for Wen's 9th birthday party. Please do keep us all in your prayers. My mother in law had her final chemo treatment Monday and we are all thankful for that!

Friday, April 16, 2004 3:03 PM CDT

Yeah!

We are unofficially released from the Stem Cell Unit!

We went to the clinic yesterday where Kate got her usual good report. Her weight and height are clocking right along - she's still in the almost lowest percentile for her age, but as long as she doesn't drop below the percentile she was already in, that's good. Dr. Sande suggested we shave her arms and back as she's still so hairy and it is warm weather now. They drew all her labs but we left before they were back. They also drew tons of other tests, like a re-do (again) of the FISH test, etc.

All of her counts are in the normal range now. Her white counts went up to 9.something from 6.75 last month. Her ferratin (iron) level is down to 1100 (it was 2300 two months ago) so at that rate maybe we'll only have a couple more months of chelation. Rookie called this afternoon to let me know the good news that her detailed white counts were all in the right ranges (apparantly they batch these tests, so while we had to wait two weeks last time, we only waited 24 hours this time) and that she can get rid of the mask! Still no official word on the prophylactic medications though - he's going to get back to us about those. Kate is Rookie's first patient (he just took his boards for becoming a nurse practitioner - he was a nurse on the unit before that) so some of this stuff is new to him.

So we do not have to go back to the stem cell unit until August for her 1 month checkup. Dr. Sande is sending us back to Dr. Watts in hemotology for continued monitoring of the chelation so we will be going back to the hospital every month still. Rookie will be faxing our pediatrician a schedule for immunizations, which will take about a year to complete.

So, it's been 251 long and yet amazingly quick days since the transplant. I would wax philosophical, but nap time is almost over, I can hear Kate rustling around through the monitor, and Wen should be home any moment. I will continue to update the website every month and continue to be thankful to the Good Lord for His great blessings, which include all of you and your prayers.

What are we going to do now? Well this afternoon we are going outside sans the mask and probably play in some dirt. Then in the morning we are all going to Gibsons (for those of you not in town, this is a local BBQ restaurant that we eat breakfast at about 6 days a week and they totally spoil Kate - she goes back into the kitchen to get her own biscuits)! And Sunday we are all going to church together.

Thank you all again for your many prayers, cards, gifts, well wishes and thoughts.

ps. Please continue to pray for my mother in law Faye as she continues her cancer treatments, and also my friends Tony (he's doing great!) and Yoo Ja as they are being treated for cancer. And of course all the dear DBA children and adults.

pps. The hemotology group at Children's is trying to pre-sell at least 1000 car tags by July. These tags are like the Auburn or Alabama or Environmental tags you see around the state, and they cost $50 more than a regular tag (although since they haven't started producing them yet, you can get a really great personalization!) $41.25 of that money goes directly toward cancer research for children, much of which benefited us. And of course that part is tax deductible. Please visit their website at www.curingchildhoodcancer.org and consider purchasing a tag for your cars.

Wednesday, March 31, 2004 1:08 PM CST

Hi, well I'm only 2 weeks late on the update, but since I finally got new pictures out I know you'll forgive me.

I'm late on all of it because after we went to the hospital on Thursday, Kate went home with Mom and then on Friday Wen met up with Vance (my step-dad) and I didn't get either of them back until the next Sunday. While they were gone, Darryl and I pulled up the remaining carpet downstairs and replaced it all with laminate flooring. We still have the shoe mold to go, but I'm going to paint the baseboards first. So the computer was taken apart before I could get to the update and new pictures, then when it was put back together the scanner was kaput for a while. The computer still tells me it doesn't have a driver for it, but it works anyway.

Kate's appointment two weeks ago was the usual good reports. Her red count was up to 15. They drew off an extra 20cc of blood when they drew her tests, and next time they will draw off even more. Dr. Sande said for the adult transplant patients who have iron problems they give them Procrit to make them over-produce red cells then draw off pints of blood. She considered this for Kate, but Procrit is a daily shot and since the Desferal (chelation) is being tolerated just fine, we'd stick with that, even though it takes longer. Apparantly extra red cell production is common post-transplant but I don't know why, I'll try to remember to ask next time.

Kate's white count was 6.75, which is for the first time above the lower normal limit of 6.0. But until they re-do her white panel she still has to wear her mask. But it's so nice to get to go where and when we need to and eat normal food. Just getting a glass of water or putting ice in her drink seems like such a luxury! She's been pigging out on grape tomatos the last couple of days - when she pooped today I freaked because it looked like she had bloody pulp in her stool. Then I remembered all the tomatoes she had yesterday!

We went through the drive-thru at "Chik-ee-Yay" Monday and Kate said "I go 'opital" and I asked why and she said "I tell Dah Sanee I go pay [play] there" pointing at the play place. I keep telling her when Dr. Sande says we can go there we will.

Darryl and I went to Pensacola last week (it was freezing) where he had some business meetings, then on to Atlanta Friday where we went to a fundraiser put on by another DBA family. They have a non-DBA daughter, and two DBA sons, one of whom they adopted from China. This was our second year to go and we had fun again and were again impressed with the amount of money I'm sure they raised. Dr. Lipton, who we saw at Schneider Children's Hospital on Long Island, was a special guest and we got to visit with him. There were also three other DBA families there, two from the Yahoo newsgroup that is our lifeline and source of so much information and commiseration.

Please keep us in your prayers, especially that Kate would drink more milk! She needs the calcium more than other people would, and just won't drink it. Also keep Darryl's mother in your prayers. She's doing well but the chemo is hard. Our friend Tony is doing fantastically and has finished his radiation and is starting his chemo and they expect him to recover fully (even though he had cancer in his brian and lung - wow). And also my friend YooJa, who has been undergoing chemo for ovarian cancer and gets CT tests next week. Oh and sweet little Kylie who started to get a transplant but had liver reactions to the chemo. They are getting her back into shape to try a mini-BMT. This is where they don't kill all your marrow - one adult DBA patient had this done a few months ago and is doing wonderfully. I hear that Jorrit's still having problems creating red cells even after his transplant.

Blessings, Lesley

Thursday, March 11, 2004 8:01 AM CST

Hi everyone,

*** Please note my new email address - change the "comcast" to "knology" ***

We got the test results back on Kate's white cells Tuesday. She still has a "selective deficiency in a sub-catagory of T-cells". Therefore, she has to continue her medicines and also continue to wear her mask. But, Rookie did allow us to take her pretty much wherever we want around town, except church (too many people too close up). That will make it easier to get to the grocery store! Also he said we could allow her back on a normal diet again, just being careful to wash everything still. I let her drink some regular water yesterday! And Rookie said we can pull up the rest of our carpet now and finish our flooring, so we will be sending the kids off during spring break and getting that done.

Rookie said that we would do this for two more months, then do her immunizations and then release us from the stem cell unit back to hematology. Since our March appointment is a week from today, we really have a good bit less than two months to go. I am disappointed that she has to keep the mask on. Since the weather is nicer we are spending a lot more time outside. While she doesn't complain about the mask, I do think she'd be more comfortable without it. But I did tell myself that I would set aside an entire year for the transplant, and we are 4 months short of that so it's my own fault for getting my hopes up!

I know I need to update the photos on the website, but amazingly, I don't have any new pictures since Christmas. I have been taking pictures this week trying to rectify that and when I use up this roll and get it developed I'll get some new ones out there.

Kate is a real treat these days. As I write she is sitting on the desk "fixing" my hair with a brush. She also likes to blow dry it. So you will all understand why I look like I do so much. She has also been using the potty very consistently, except at night. She has also suddenly developed manners, and I don't know where that comes from as we haven't really been pushing except for please and thank you, but she says "Dank oo vedy much" and "Yef ma'am" and "No dank oo". She says "don't tush it" (touch) and "Yemme see dat" or "Yemme haf summa dat" (let me have some of that). I like to watch her watch Barney or Teletubbies videos. She does all the dances and sings and does the motions. Wen NEVER did anything interactive with the TV - he just sat and watched, except for the videos with fighting in them (like Hercules) where he acted that out on my furniture.

Kate eats an amazing amount of food up until nap time, then she seems to taper off. Yesterday she had 1/2 a grapefruit and a waffle for breakfast, then a container of yogurt, then two biscuits. All that before lunch. She's getting a little belly back and her legs have really filled out, I think she'll look OK in summer clothes.

Kate's hair will be really curly just after a bath, but it smooths out during the day. It's soft and wavy and brown and about the same length as Wen's.

I'll write more next week after her next appointment, blessings, Lesley

ps. we will be switching over to Knology cable on Friday (so Darryl can pig out on the Braves on Turner South), so watch this website for email address changes if you are not already in my address book.

Monday, February 23, 2004 4:49 PM CST

Hi everyone,

We have had a very good month. Kate has been very much herself (more so at times!) and been eating well. She gained 0.4 Kg so that's pretty good. None of us have had really even a cold this year, which is a true miracle.

At the hospital today, Kate got her usual good report. And again she actually has a bit too many red blood cells. Next month when they draw blood they are going to draw off a few ccs extra just to reduce that, but it's not high enough to be a problem.

Her overall white count was 5.45. The bottom end of the normal range is 6 (the high is 11 I think) so she's almost there. They sent off a sample to do a functionality test, which will tell them how much of each type of cell she has. This will take two weeks. When they get those results back then we'll know if she can go out without her mask, eat normal food, go out to eat, etc. When that happens they will start her immunizations and then discharge us from the stem cell unit back to hemotology. I think we will see the hemotologist every 6 months and the stem cell unit every year.

We are still doing her chelation and they will recheck her iron next month.

We were on the radio this month for the Children's Health System radiothon - they pre-taped me and then Wen and I were on live also. And we got a video tape of the vignette they made of Kate's story for the telethon. It's so good! I'll be sure to remind everyone when the telethon is on.

I can't think of anything else new about Kate, just keep praying for her to gain weight (she does have a little tummy and her legs don't look like sticks anymore) and for her immune system to be strong.

As for our other friends, our friend Tony does have cancer, in his lung and brain. Both tumors have been removed and he's started radiation with chemo to follow. It might be caused by radon - we immediately had our home tested and it passed. Darryl's mother Faye began her chemo and it's much stronger this time than she's had before, and she feels it. Right now she's in the hospital with pneumonia and a kidney infection, but her doctor says she'll be all better by Friday. Please keep her in your prayers. I have had no updates lately on the other DBA kids undergoing transplants, but do keep all these sweet little ones in your prayers.

Monday, January 26, 2004 6:46 PM CST

Hi Everyone! This month has flown by, and crawled by!

We went to the hospital today for Kate's checkup and got the usual great report. All her blood counts are good. Her lymphocyte count is 34 This is a bit low for sibling donors at this point, but the doc said that since it's higher than it was last month, and since Kate gained weight this month (yeah! 11.1 Kg) that next month we should see some real improvement and be able to discuss when she gets off her prophylactic anti-everythings and begin her re-immunizations. She'll have a complete immune system when the count is 100f we understand that right.

Kate also got to go off her high blood pressure medicines.

And her ferratin level (an indicator of iron levels) is half what is was last month, so down to about 1400 now. If we continue this way maybe we'll only have to chelate a few more months.

Elsewise Kate is doing terrifically, just a normal two year old (which can be hideous). The hair on her body is just as dark and thick as ever, but I did shave it on her legs for the chelation and it has never come back there. So I expect with her body hair finally falls out that will be normal again. The hair on her head looks just like Wen's, which means brown and wavy but not blond and curly like it was before (sob, I admit my vanity). We have a bit of cabin fever as we never take her ANYWHERE except to the grandparents to babysit. Since the weather has been a bit warmer she's been able to go out in the afternoons and ride her cars. But we have all been extremely healthy this winter, so the isolation is working. The timing of everything has been so perfect - with Wen's school, with being in the hospital during the heat, getting out and having beautiful weather to keep us occupied at the apartment, and now during the time we need to keep her isolated the weather is cold and rainy anyway.

I have some very important prayer requests - of course continue to pray for Kate to gain weight, grow white blood cells, and stay healthy. My mother in law Faye is again undergoing treatment for non-Hodgkins lymphoma. This is the third time she's dealt with this, and it's more serious this time. She's been through radiation (just finished today) and will start chemo soon. Also, a dear friend of ours named Tony Goodloe has cancer in/on his brain, and on his lung. He will be having brain surgery very soon and then a lobe of his lung removed a couple of weeks after that, with chemo to follow. He and his wife Kim and children Ashlynne and James deserve all the prayers they can get.

As for our transplant and DBA friends, everyone seems to be doing very well! Please keep all these children (and DBA adults now too) in your prayers.

Thanks to everyone for all the blessings you've channeled our way!

Tuesday, December 23, 2003 12:35 AM CST

Merry Christmas everyone. As usual we have all good news. Kate hasn't gained any weight since her last clinic visit, but she's held steady at 10.5 Kg. Dr. Sande took her off the secondary hypertension medicine she was on, so she's down to just 6 doses of medicine a day, very reasonable compared to what we started at! She is still doing her chelation at night, of course. And we don't have to come back to the clinic for a whole month!

It was two years ago yesterday when we took that wild ambulance ride down to Children's Hospital when Kate's hematocrit was NINE. What a difference a couple of years and a transplant make - yesterday her hematocrit was TOO HIGH - 39+!! Ha ha! Not high enough to draw any blood off, it was probably just due to the lab procedures or Kate not drinking enough. But we thought it was funny!

Kate is absolutly terrified of Santa. She freaked out when he appeared in the Stem Cell Unit, but she finally calmed down enough to be in the same room with him at the unit's party. She does love to open presents, so she's having fun with Christmas.

I don't expect to do another update until the end of January. If you miss us terribly, just email!

Keep all the other DBA kids and the transplant kids in your prayers, wouldn't it be bad to have to stay in the hospital at Christmas? Keep Kylie in your prayers, the 4 year old in New York/New Jersey. She had two days of Busulfan (chemo) and had some complications and they had to stop the whole process, and her other 9 brothers and sisters all have the throwing up virus. Who knows what will be next? I haven't heard from Jorrit's aunt still, and that worries me, so say extra prayers for his family.

Merry Christmas, God Bless Us Everyone!

Wednesday, December 17, 2003 1:14 PM CST

Hi everyone,

Kate got her central line removed yesterday and everything went just fine. There's still a folded up gauze pad and tape on it so we can't really see what it looks like but it's supposed to have a butterfly bandage on it.

We got to the hospital, per the surgeon's office's instructions, at 6am (meaning we got up at 3:45) only to find out that none of the nurses work on Tuesdays until 7am, so we went up to the stem cell unit to wait it out. That's so that Kate could take off her mask. While we were there I weighed her and she was down to 10.1 Kg, which is down from 10.3 last week, and down from 10.8 five months ago (although she has gotten taller). She really does eat just fine for a two year old, but just not good enough for a stem cell patient. So please continue to pray for a good appetite and weight gain.

That seems to be the only issue right now. We go back to the clinic on Monday and will attend their Christmas party that day also, so I'll let you know next week.

Keep all our other DBA children in your prayers, and enjoy the season!

Wednesday, December 10, 2003 3:02 PM CST

Hi everyone,

I'm trying to add some new pictures but my scanner is making them come out funny, so I'll keep working on it.

We went to the clinic yesterday, and while Kate didn't gain any weight, she didn't lose any, so Dr. Sande was happy with that. All her other counts were fine, although her white count was a bit down because she's had a cold this week. She feels yukky and hasn't eaten much the last couple of days, but ate tons the other days, so maybe she has a tapeworm??

The best news is that she gets to have her central line taken out! We are scheduled for Tuesday. They will do it in surgery so she can be sedated but it should be a quicky procedure. That will be so much easier on us, not having to change the dressing and flush the lines every day. Of course, we are doing chelation, so we still have yukko medical stuff to do every day, but every little bit helps.

Also Dr. Sande took off one of her hypertension med doses, to begin weaning her off that medicine. So have a new meds schedule - down to only 15 doses per day!

Oh, and we only have to go back to clinic every 2 weeks now. Our next clinic visit will be on the 22nd, which is also the day they are having a stem cell reunion Christmas party, and they will also finish up the interview with us that they started when we came to Children's (the one for the stem cell promo).

Can't think of much else today. Kate's hair is growing every second, I think if she were still enough we could see it grow. It's fluffy now, and will stick up if you use a stiff brush. And since it has a little length to it, it looks lighter, not so jet black.

Please pray for Kylie in New Jersey. She is 4 and has DBA and starting her transplant at Schneider Children's on Long Island, which is where we took Kate for her second opinion. Her family has 10 kids, so it's going to be extra tough on them. I haven't gotten an update on Jorritt lately, will send an email now.

Blessings, Lesley

Monday, December 1, 2003 8:27 PM CST

Hi everyone, I hope you all had a great Thanksgiving. This was my first in 15 years not to be at my in-laws and Darryl's first ever not at home. I really missed them and the chicken and dumplings and the dressing but I enjoyed eating with my dad's end of the family and cooking my first ever turkey (which was, by the way, delicious if I do say so myself).

OK, first things first. All I can say about this Auburn fiasco is that I suppose we now know how the 'Bama folks feel. Ha.

Kate's checkup today was excellent, as usual, with the exception of her weight. She lost almost a whole kilogram, or 2 pounds, since last week. Since she hasn't had IV nutrition this week I expected it to be a little low, but not that much! She's been eating consistently (a whole bag of Apple Jacks in one week) and drinking more, and even drinking milk (yea!) so I didn't expect that. But, Dr. Sande (who is back from her 2 months off of clinical work) didn't seem too concerned, and sent us home with food logs so they could get an accurate calorie count. She said that Kate's body needs to use up a lot of calories repairing itself and it's to be expected. I just hope that we don't have to go back on IV nutrition. It's been so very nice at have a normal evening, and Wen certainly gets more attention. I've been bathing her and changing her dressing and flushing her lines during the day so that we don't have to spend our family time doing that at night and it's been so much nicer not to have to mix IV bags and get that done on time and drag the equipment around.

Speaking of lines, on Tuesday last week when I flushed her line I felt a spurt of fluid. So I pushed some more saline into her line, and didn't feel anything. I assumed that I hadn't gotten the syringe twisted on good, and finished up. Then on Wednesday morning when I flushed I not only felt but saw a spurt of liquid come out of her line - she had a tiny pinhole just next to the cap of her red ("out") line. So, we spent Wednesday driving back down to Birmingham and waiting almost 2 hours for a surgeon to come up and repair her line. Wen was out of school and so he went and my Dad drove us down there. Wen got the best end of the deal on that as if he'd stayed home he'd have to stay in his room on restriction but as it was he got to watch cartoons all day in the clinic.

They redid Kate's ferratin (iron) level and it is high, so we are to begin doing chelation therapy again. We'll start when her supplies all get in. It involves sticking a needle under her skin and hooking that up to a pump that dispenses a drug called Desferral over 10 hours. The drug binds to the iron in her body and it's passed through her urine, which then turns pink! Thanks Dr. Forrest for that bit of knowledge. We do it 4 to 6 nights per week, depending on our schedule. Our wonderful Yahoo newgroup for DBA clued us in on a needle used by diabetics for insulin pumping. It comes with an automatic inserter, and can be in place for up to 48 hours, which seems like it works much better than the standard getup that the hematology clinic uses for chelation. It should be inserted into a fatty part of your body, but unfortunately Kate doesn't really have any more fat so that could be more painful.

I dropped off 3 rolls of film today, so I promise to have new pictures next week.

Keep us in your prayers. I haven't gotten an update on Jorrit, but I saw Ketavious today in clinic and he's doing great - very fat!!! Another DBA transplant child, 12 years old, with a matched sibling donor, died last week. I don't know him or the details, but I'm awfully glad not to have known of any failures before we started. Ignorance is bliss!

Blissfully, Lesley

Monday, November 24, 2003 8:37 PM CST

Hi. Before I forget, I put a new picture on the photo album page. I haven't taken any film in since I've been home, so I had to get one from Dad. I'll try to do better.

Kate got still another good report at the doctor today. She is back up to 11.3kg (from 10.8 to 11.3 to 11.0 back to 11.3) so she is going off the IV nutrition for a week to see how it goes. Keep your fingers crossed and knees bent. I have no idea how all her tests last week came out. I forgot to ask and they must have been fine because no one told me otherwise. Except her ferratin (iron) level was atrociously high, high enough that it was obviously incorrect and they will redo it. So we get to wait at least another week before restarting chelation.

Under the catagory "If it's not one thing, it's another" AKA "We can't win": Wednesday morning Kate slipped off a stack of flooring (you know, those 2 rooms worth of flooring that is stacked in my kitchen because we can't put it in because we can't pull up the carpet while Kate is living in the house becaue 15 year old carpet is moldy (yuk)) and did something to her foot/ankle. I took her to the ER in Huntsville to get it x-rayed and they didn't find anything wrong, but still she wouldn't put any weight on it and it hurt when she did, so Darryl took her to our pediatrician, who couldn't find anything wrong, and so finally today at Children's they still couldn't find anything wrong. Except that Mom and Dad and Grandmother's arms are about to fall off. But nurse Brenda put a magic wrap on it and remarkably, since we have been home today, Kate has stood on the tops of her feet (holding on in the crib), squated on her feet, and also squated and stuck her butt up in the air. She was also caught this weekend standing on them twice. Hopefully by tomorrow she'll be walking again.

And of course Darryl was out of town most of last week again! But I got to go off this weekend for my annual Girl's Weekend and had a marvelous time. It would be nice just once, though, to get to leave without spending the 48 hours before going away in ERs and pharmacies and in other general crisis situations.

Kate is on her last week of cyclosporin. So keep her in your prayers that she won't have any graft vs. host show up now, and that her white counts would rise quickly to normal levels. I expect them to do as well as her red and platelets.

As for out other DBA friends, Jorrit has received another transplant 6 days ago (too late to get into my update last week) from an unrelated donor. They also gave him more chemo and some radiation this time. He is in better shape than he was two weeks ago (which was awful) but they don't know about engraftment yet. So please pray for the Zeldenthuis family, they have been through so much. Another DBA child, 12 years old, has died from a perfectly matched sibling donor transplant. I won't say his name as I didn't ask permission; I did not know them but the lady from the DBA Foundation posted a message about them. I don't know any more than that, but you can pray for them too. Darryl and I made our peace with this possibility for Kate, feeling that we would be risking her life if we didn't do the transplant, but I can't help but think I would still blame myself if it had gone differently for us. Ignorance can be bliss.

We have much to be thankful for.

War Eagle,
Lesley

Tuesday, November 18, 2003 12:40 AM CST

Hi everyone, not much new to report. Kate's appointment yesterday went fine. She has not gained any weight this week, though, so please keep that in your prayers.

They re-did a bunch of tests to verify engraftment, but with a hematocrit of 33, I think it's a waste. And besides, even if it showed that she didn't engraft, who cares? She's making normal blood.

They also tested her ferratin level (an indicator of iron in her body) to get a baseline before we start back on chelation to get rid of all the iron left over from her transfusions. For adults, they draw off blood and force the body to use the extra iron up making new blood, but drawing blood out of kids is another story.

We enjoyed celebrating Kate's 100th day on Friday. I suppose the next big day will be day 365. Seems like a long time away, but I bet it will be here before you know it. One of our previous minister's wife use to say about raising kids "The years fly by, but the days drag on forever." So true.

Blessings, Lesley

Tuesday, November 11, 2003 3:24 PM CST

Hi everyone,

Once again your prayers have held, and Kate gained almost a pound this week! Actually 0.4kg. The doctor says as long as she continues to gain some weight each week, in a few more weeks we could try going a week without IV nutrition and see how she does. This would be a step toward getting her central line out, which would give us a much more normal life.

Elsewise Kate is doing great, very happy and energetic. The hair on her head is growing in quite well, and she has a dark shadow over her whole head. Because of that and the dark hair on her forehead (which looks like she's got a really low hair line) we have noticed a striking resemblance to Quse Hussein (Saddam's son). And I think if Kate had an army at her disposal she might be inclined to be as bad tempered as Quse, at least occassionally!

She's been busy this week taking care of her baby dolls and taking them on walks. She gets a pretty good ways down the road with them and you canNOT convince her to turn back. Then she tuckers out and you have to carry her, the doll, and the doll stroller (which comes up to your knees so kills your back to push) all the way back home.

I got a statement from Children's Hospital for $292,000. I took it to the clinic yesterday to pay the $175 that we owed for it and everyone got a real kick out of seeing it.

Please continue to pray that Kate will eat well and gain weight and stay healthy.

Friday is Kate's Day 100, a statistically important day for stem cell patients. On Monday they will redo all her engraftment tests (but duh, she's got a normal red count, of course it's Wen's marrow!) and also an iron level as we will have to start back on chelation therapy to help her get rid of all the leftover iron from past transfusions. So we plan to celebrate that this weekend; we have much to be thankful for.

I'm very sad to tell you that Markice passed away Saturday, due to complications from graft vs. host disease. What a hard hard thing for his family. Some good news, though, that they have decided Ketavious' transplant may have worked after all (hard to tell with the disease he had) and he has gone home (after about 5 months in the hospital). And also Jorrit will go through another transplant next week, this time with an unrelated donor. He continued to have completely unproductive marrow and they have to try again. He has been through so much, please pray extra hard for him.

How lucky we have been. When people comment on how difficult this must be for us, I think of these other children and realize that what we've been through scarcely compares.

Blessings, Lesley

Monday, November 3, 2003 2:07 PM CST

Hi everyone. We have been to clinic and home today. Kate's blood numbers all look fine, as does the rest of her, but she hasn't gained any weight. She has eaten very well this week, so if she keeps it up then perhaps we'll see improvement next week. The doc said take another week and we'll talk about a feeding tube or gastric button then. Once this week I meant to set the delay on her pump to 40 minutes and set it for 40 hours instead, and then Thursday night she only got 2 hours before we had to unhook her to take her to the ER (see below), so she didn't even get two nights worth of IV nutrition.

Kate ran a fever of 100.1 on Thursday night and we had to spend the night in the ER. Fortunately the SCTU allowed us to go to Huntsville Hospital's ER instead of having to drive to Birmingham. They cultured Kate's blood, her central line, her urine, checked her out, and ran a bag of antibiotics. After being there 4 hours her fever was gone and she never ran it again. According to the last word all her cultures have been negative. She did have a little bit of a snotty nose on Friday so it was probably just a viral thing.

Fortunately Darryl came home Thursday about 1 hour before we had to go to the ER. He was in Orlando all last week, which I didn't mention because who knows who is reading this and I didn't want to announce I was home alone. Wow, that was HARD being alone with Kate and Wen - lots of work! My mom came up and helped a couple of nights and Wen also talked her into staying on Thursday night. That worked out great so that we didn't have to call someone in to take care of Wen while we were at the hospital.

Both kids had a great time on Halloween, although the first people to come to our door had an adult dressed like a doctor with them and Kate kept saying "No hurt! No hurt!" all night. But she did wear her Raggedy Ann costume and a got a full bucket of candy and enjoyed herself. Wen decided on St. Patrick for Dress as Your Favorite Saint Day at school, Indiana Jones on Friday night, and the Grave Reaper for a party we went to on Saturday night (Kate stayed at Dad's). Darryl went as an OB and I went as a pregnant woman (ooh - very scary!).

Please keep praying for Markice, he is now in the ICU at Children's on a respirator. He has graft vs. host in his intestinal tract and liver and is very bad off. Also, Ketavious' transplant didn't take. His presenting condition didn't require him to have chemo, so I hope they will be able to redo his. Keep them and Jorrit in your prayers. Everyone we have gone through this with except Stevie is failing, and it reminds me what risk we put our child through, and what grace we have received. I actually think we had a very easy time of it.

Blessings, Lesley

Tuesday, October 28, 2003 1:10 PM CST

Hi everyone. Sorry not to make an entry on Monday but it was just impossible! I had Wen's parent teacher conference yesterday as well as the tirp to Birmingham (Wen is of course a wonderful student but needs to slow down and get his handwriting, grammer, spelling, and punctuation right). Tuesday nap time may be my best chance to do updates.

We went to the hospital yesterday morning. Kate's blood work all looks great (her hematocrit was 36!!!) and her skin looks completely normal and her runny nose is gone although she's still got a cough. However, she weighs exactly what she weighed when we entered the hospital and she should have gained some weight by now. She has been on a constant growth curve up to July, but now she has dropped down to the next line on the chart. Those of you with young kids understand what I mean, I don't know how else to phrase it.

Dr. Sande is off for two months, so we see Dr. Crawford, who I like very much. He says that he's willing to wait and see for a couple of weeks, but that if she drops down any more on the growth chart, he wants to put back in the feeding tube. I'm totally unhappy about that as you can imagine. The first tube was a nightmare to put in and of course Kate pulled it out a few hours later. They can do a gastric button, which is a little hole through the abdomen, done with a laproscope. This is a surgical procedure and so more risky, but it sounds like it would work better for Kate. What's one more scar at this point?

The doctor says that often for patients if they can get the gut filled up and working for about 5 days that it will suddenly "come alive" and the patient will be back to eating and drinking normally. Of course this is all the result of her digestive tract being damaged (not permanently) by the chemotherapy. And I think that wouldn't be such an awful thing, because we wouldn't have to do the IV nutrition at night and Darryl and I could actually go out for dinner and stay out past 7pm. It would make our evenings much less stressful, not only because of the IV nutrition work but also it's about the time Kate could get her central line removed, and that would mean we wouldn't have to change her dressing every night. That's a very traumatic thing we all go through daily.

But since I'd rather Kate start eating the natural way, we are focusing this week on eating!! I have bought all the high fat but yet healthy foods I can think of. Wen won't drink "that fat milk" so I'm having to buy double of things. Actually Darryl's doctor put him on Atkins diet a couple of weeks ago, so I've been buying and cooking with fattening stuff lately. It's a real departure from my usual style. But I suppose if I've got one to fatten up and one to slim down I'll have to stop doing what I've been doing. For you pizza addicts out there, know that pizza is about the most fattening food there is. Fortunately Kate likes it.

Instead of feeding her all day on demand, we are working on three meals with snacks, and sitting down at the table for each one. Since Kate eats much better with her brother, poor Wen has to sit at the table for quite a while until I'm sure Kate won't eat another bite. I think she's doing a little bit better just in the last day, but it could be wishful thinking.

Other than the weight thing, she's perfect. The hair on Kate's head is growing, at least on the top, but not in the back, so she's gonna look funny. Her back and her little bottom are just completely covered with long black hair. In the shower she looks like a wet dog. Her unibrow is holding steady, though, as are her sideburns. 5 more weeks until she's off the cyclosporin!

Kate plays and sings and does all the other stuff two year olds do. If she had some hair and a little more weight on her you'd never know she had a transplant. Of course when we go outside for walks and she has on the mask and a hat and sunglasses and there's basically no skin showing, we get a lot of funny looks.

I'm hoping that she'll put on her Raggedy Ann outfit for Halloween Friday, but I'm not kidding myself. She likes to look at the costume but won't put it on. Wen has been planning to be the Grave Reaper but this week has suddenly gotten into Indiana Jones and has put together a homemade costume that he wears every day after school. So who knows come Friday.

I asked Rookie the nurse practitioner if her white count would come up right away in December, but he said there's no gaurantee of that, that it could take a long time. But of course I don't believe him, everything else has gone so splendidly. He wouldn't even give me an idea of when she could go out without her mask. And also they won't let us put in our new floors that have been sitting in the garage for weeks (and are now in the kitchen). Pulling up the carpet throws up too much mold into the house and Kate would have to be out of the house for two weeks if we did it.

Well I'm sure I'll think of lots to say as I'm cleaning house this afternoon, but for now that's all. Your prayers have kept us afloat until now, and healed Kate's skin, so I'm depending on you all to get Kate eating again, and quickly. I have every confidence in you!

Blessings, Lesley

ps. please continue to pray for Jorrit and also for Markice and Ketavious. Markice was the little 9 month old baby admited just after us. They are still in the hospital (60+ days) and while I didn't get a complete update from his grandmother yesterday, I understand that something is not going well, and she was very upset. He is a beautiful, happy, precious baby who has a rare marrow problem also, having to do with his platelets. I didn't see Ketavious' mom, but he's still there to and that's been months now for him.

Thursday, October 23, 2003 12:28 AM CDT

Hi, I know it's not Monday but on the chance that some of you are checking in, I wanted to ask you to pray for Jorrit Zeldenthuis. He's the 6 year old boy in the Netherlands who has DBA and had a transplant that failed (they did the whole chemo and rATG and transplant from his infant brother, but when the first white cells appeared they were Jorrit's own cells and not his brothers. It's possible that his brother just didn't have enough stem cells to make it work as he's a baby, but they had to do the transplant now as Jorrit's health is poor). They sent him home and he has been making white and platelet cells, but then started running a high fever and stopped production. They found some dead tissue in his rectum/large bowel area (perhaps the chemo did this?) and removed it, and hopefully this will correct the problem. But he was already so sick and then went through the whole chemo/rATG drugs and now this, things are very bad for him.

We have been blessed to have been encouraged by the two successful transplants before us, but can't forget the risk we subjected our family to. Many other DBA patients on the Internet group are now considering transplants also and I hope they will find the same success that we have.

Blessings, enjoy your weekend, Lesley

ps. Kate is doing great. I think two months of constant attention have ruined her, and I get very little time to myself so once a week updates might be all I could manage even if I did have something new to report!

Monday, October 20, 2003 3:02 PM CDT

Happy Monday Everyone,

We have been to the hospital today and gotten a very good report. Kate's blood counts are all good (we didn't stick around for the lymphocyte count so I don't know what that was) as is everything else. Of course she still eats hardly anything and only drinks about half of what she needs to, but they are unconcerned about this. Kate continues to get IV nutrition at night.

We are still tapering down on her cyclosporin. If all goes well she should be off it by December 1.

We have been busy here at home cleaning out closets and the play room. Now I just have to tackle my sewing room, which could take forever as it's the room I just throw everything in when I don't want to look at it!

I forgot to mention in last week's update that last Tuesday they told us we only have to come once a week to the clinic. So I will try to do updates on Mondays or Tuesdays at the latest but I doubt I'll do any others. Being home is wonderful but it is so much more work! Even with Darryl home to help with getting all of Kate's nighttime stuff done (bathed, dressing changed, central line caps changed/flushed, IV nutrition mixed and hooked up and read to and rocked) there's still Wen and all his homework and reading and soccer, not to mention cooking and keeping a large house clean. And cleaning isn't something I can let slide - it must be done and done regularly and done well. But the girls at church are still helping out with meals and soccer should be over soon! It was a lot easier in the tiny apartment with just Kate to take care of and cereal for dinner.

I hope everyone has a wonderful week. We have been blessed with a beautiful fall and that makes everything better (except for you Bama fans). Blessings, Lesley

Tuesday, October 14, 2003 6:28 PM CDT

Hi everyone,

I know it's been a long time since I wrote (and quite a number of you have reminded me) but we have been so busy! Wen and I were in Anniston and Atlanta over the weekend, and since Darryl was off on Monday we had a lot of cleaning up and out projects around the house.

We went to the hospital today and Kate is doing terrific. Her blood pressure is good, all her counts are within the normal range, and even her lymphocyte count is up to 10 (it was 3 on Friday and I think normal is about 40). Her skin looks just about normal now. In good light you can see splotches on her head and she still has some dark on her belly. I asked Dr. Sande if this was really such a good thing, that perhaps it was all just the GVH taking over completely and she said well, she just had no clue. She said she is fascinated by Kate's skin. As long as her skin doesn't get red, rough, bumpy, tough, it should be fine.

We continue to taper Kate's cyclosporin and are down to 0.7ml this week. Cyclosporin makes any hair that you have get really thick and dark. So not only does Kate now have her dad's eyebrows and back hair, she also has a hairy forehead. I tried to get her to let me trim it with Darryl's trimmer but she wouldn't let me. The hair on her head is also growing. You can see it in good light, and it's dark and about 1/8" long, but there's not enough of it over her whole head to make her head look any darker than the rest of her skin.

Kate is doing a good job taking her medicines, and now they have added Bactrim as a profylactic (sp?) antibiotic on weekends. She still does not eat or drink as she needs to and we still give her IV nutrition/fluids at night. She's sleeping pretty well but now that Wen is home and we are trying to get them both into bed by 8pm she has decided it's more fun to play up the parent sympathy and try for 10pm or later. She likes to sleep late now, which is something she never did before (Wen has never slept past 7am I don't think).

We are working this week on finishing the cleaning out of closets and I'm going to tackle the play room also. If you are in need of any clothes or toys, I think you can get a good haul at our church's rummage sale next fall. Also I'm trying to finish up the thank you notes - we have really been showered with love through gifts and services!

Mom has asked me to pass along prayer requests for Traci Wells, who is my grandmother's boyfriend's granddaughter. She has been diagnosed with cancer but they can't figure out what yet but it has something to do with her bone marrow.

Blessings to us all, Lesley

Friday, October 10, 2003 6:07 AM CDT

Good morning, hated to leave today without a little note.

There's not a lot to say, really. We have been enjoying being at home. Mostly I have been working at putting away all this stuff we brought back with us. The pantry and freezer are overflowing, and the toy situation is out of control. Completely. For both kids.

Kate and I have been going on bike rides every day and walking a bit. I ran a few errands yesterday but since I can't take her into the grocery or Target or such we are limited in what we can do.

We go back to the hospital this morning and I will stop off at the apartment to pick up some papers I forgot, and at my brother's to get the big basket of toys that even after two trips we couldn't get home (what will Christmas be like?). Then Kate and I are going to Anniston to my sister in law's house. Darryl will meet us there, as will his parents and Wen. Wen and I are spending the night there, and Saturday he and I and my sister- and brother-in-law are going to 6 Flags in Atlanta. Wen and I are spending Saturday night in Atlanta with my sister. Wen will have gotten a complete tour of all great grandparents, grand parents, aunts, uncles, and cousins by the end of the week.

I hope Darryl and Kate will have a nice quite weekend at home. Whenever we drive by someplace Kate likes to go like Gibsons or the gym, she says "Pat!", which is the name of her favorite waitress and also the name of the lady in the child care center at the gym.

I'll write back on Monday after our clinic visit.

Blessings, Lesley

Tuesday, October 7, 2003 1:10 PM CDT

Hi everyone,

As I said in my short posting yesterday we are now home for good!

Monday at the clinic I asked Dr. Sande if we could be home Thursday through Sunday couldn't we be home Monday through Thursday also? And she said sure. Maybe this weekend was just a trial, huh?

So anyway Kate and I went back to the apartment, packed everything and put all we could in the car and left! I didn't tell Darryl we were coming home so when he got home after work he opened the garage door and there was my car. He was very surprised. I told him it was a good thing he didn't decide to go out with his girlfriend after work. He said, no girlfriend, but he did stop off and buy chips and dip to have during the playoff games last night. Almost as bad as a girlfriend!

Actually Darryl has lost a good bit of weight over the last two months, and I have gained back everything I worked so hard to get off. I hope that in getting back to a more active life I can lose it again but I bet now that I'm home cooking it won't be so good for Darryl.

We are going to go back to the apartment tomorrow and clean it and take home the remaining stuff - the huge pile of toys and the food from the fridge/freezer.

Kate has to go back to the clinic on Mondays and Fridays and being home is a change of location but not of routine. There's still all the medicines to take, and the rules about food and places and people. But it's still good to be home.

Wen is off on a grand tour of the grandparents this week as he's off on Fall Break. He and I and some combinations of sisters and in-laws are going to Atlanta to Six Flags this weekend. Last year we went to Orlando (Darryl had a business trip) during this week and in some ways it seems so long ago and in some ways it seems like yesterday.

Thanks everyone for your prayers, please keep them up, especially for Kate to eat and drink (and to drink something better than Coke).

Monday, October 6, 2003 6:34 PM CDT

Hi! More great news - we are at home for good! We have to go back on Mondays and Fridays for bloodwork but otherwise are living at home now.

More info later....

Saturday, October 4, 2003 7:52 AM CDT

Hey, we've had a great time so far at home. We did all the usual stuff - soccer game, and therefore a late dinner (thanks Inmans), getting to bed too late, rushing to get ready for school, etc. I went to the gym and also got a lot of work done in the yard yesterday while Darryl took Kate for a ride in the jeep and to play in Dad's boat and for a long nap on his chest in his chair. Now the shrubs don't look quite so overgrown. I also managed to get a bit of the house picked up. I'm not sure what the guys did between when I left on Sunday and Thursday, but I counted the number of pairs of socks I folded - 13 for Wen and 17 for Darryl. What have they been doing????

Today I'm going to tackle some transplanting of the horticultural variety!

We had dinner at my dad's last night. I hope today we'll get to go the the Greenway Trail and ride our bikes. It's really fun to do the normal things again.

Kate had a bit of trouble sleeping in her own bed the first night so Darryl slept in the big bed in her room but last night she did great, until about 4 this morning and he had to go back in there and sleep. Now Darryl's gone off to breakfast and Kate won't get up! But she's an hour late for a medicine so I've got to go get her up.

Enjoy your weekend, I don't think I'll write until Monday. Oh and put a new picture on the picture page.

Thursday, October 2, 2003 6:17 PM CDT

Hi! Guess where I'm writing this from? Home! With Kate!

When we were at the clinic today Dr. Sande was making over about how wonderful Kate was doing and how great her skin was looking (it IS better - keep those prayers going) and how she wished everyone could do so well. So I threw out "So that means we can go home this weekend?" as a joke and Dr. Sande said Yes!!!

We had to wait for the home health company to bring all her nutrition stuff and I wanted to do a little Christmas shopping while Mom was in Bham to stay with Kate so we didn't leave until this afternoon, but we are home.

We are going to Wen's soccer game and stand way far away from everyone else, and other than that a quite weekend hopefully. All the same rules apply as in Birmingham - no restaurants, no crowds, no dirt/grass, no other children, but it's great to be home.

Darryl made a little party for Kate with balloons and poppers and even a little present for Mom from Klos jewelers (love those Klos bags - thanks Reid!).

We're off to the game, blessings, Lesley and Kate and Wen and Darryl.

Tuesday, September 30, 2003 3:16 PM CDT

Hey, I don't have much to report today. Dr. Sande has reduced Kate's cyclosporing dose by 0.1 ml to 0.9 ml. Kate didn't throw up all day yesterday but spit up her medicine quite a bit this morning.

We slept late this morning then went over to my brother's house and went for a walk with him and his dog. Kate said "My Honey. I yuv me." She gets that from Barney - she moves her head Stevie Wonder style and sings "I yuv me..." so now that means "I love you". Went ran into Target quickly for diapers and Chick-fil-A for take out and now she's napping.

Blessings, Lesley

Sunday, September 28, 2003 6:03 PM CDT

Hey.

I think Kate was really glad to see Darryl on Friday. Friday morning she said "I 'un my Daddy pees". When I told her he was here (in the parking lot) she clapped her hands and looked at me and said "Bubba?" Sorry, no Bubba this weekend.

I stayed Friday night here and went home Saturday morning. I went to Wen's soccer game in the rain (sat in Dad's car), bought flooring at Home Depot (no more carpet downstairs!), paid bills, ordered delivery and watched a movie with Wen and washed clothes, went to church this morning, and canned some peppers and pulled some weeds this afternoon. It sounds like work but it was a good break from what my days are like here.

When I left this afternoon Kay Inman was pulling weeds and Tom was mowing the grass. The Goodloes mowed and weeded for us last week. Much appreciated!

We had a guest singer at church today, and already I can't remember his name, but it was the lead singer from The Spiral Starecase (Staircase?), and after church he sang "I love you more today than yesterday" which I love and reminds me of senior slide show at college. He lives in Guntersville and takes piano lessons from our church's piano player.

About an hour after I left Saturday morning Darryl and Kate had gone out for a 45 minute walk and when they came back someone had broken into Darryl's Jeep and stolen his stereo, sub-woofer thingy, and all the stuff in his console (and they broke his console). I'm glad he didn't have it locked as all they would have done was tear the soft top to get in. Obviously they were watching for him to leave and his was the only car in the lot.

Was it Emily Litella or Rosanne Rosanadana who said "If it's not one thing it's another?" Actually I feel more like the Whiners than Emily or Rosanne.

Kate ate all the dumplings I made on Thursday (or did Darryl help?) and so I've made some more already today and she's eating them now. Darryl said she had a major throw up session today, so hopefully she's gotten that out of her system for the day.

Tomorrow we go to the clinic and I expect them to start lowering her cyclosporine dosage. Please be praying that there won't be any graft vs. host problems resulting from that and requiring her to stay on a higher dose.

Blessings, Lesley

Friday, September 26, 2003 11:10 AM CDT

Hi, Darryl pointed out that my explaination of Kate's white count was totally illegible yesterday. Probably because I was trying to do the update before Kate noticed that I was playing with the computer and not her.

Kate's white count is in the normal range, on the low end of it. But instead of having a 50/50 split of neutrophils and lymphocytes in that count, she has almost all neutrophils because the cyclosporin is suppressing lymphocyte production. Which it's supposed to do to prevent GVH. Hope that makes sense.

I forgot to say that as we were walking along the outside of the golf course yesterday there were three men teeing off just on the other side of the fence. They all had on kilts and matching socks and hats and even sporran (those purses). Well except one guy that just had on a t-shirt and baseball cap and tennis shoes. And the kilt and socks. They looked so interesting but they wouldn't tell me what they had on under the kilts. It's a public course but very very hilly with lots of really rough rough so I imagine it's challenging. The sprinklers were on parts of it and that's Kate's favorite part. I was hoping to see some people get caught in the water but missed out.

I made chicken and dumplings last night and Kate a huge bowl of them (so did I) and also a slice and a half of cantelope. She wanted eggs and sausage for breakfast but once I fixed them she wouldn't eat them. She's napping now but it's time for medicine so I'm sure she'll be awake shortly.

Darryl is coming down today and I'll go home tomorrow. I'm hoping to get some more yard work done (my poor garden and beds look so sad!) and go to church on Sunday. We are really enjoying this beautiful weather that we have had every single day (but two, I think) since we were discharged and count it as a real blessing.

Thursday, September 25, 2003 4:11 PM CDT

Hello,

We have been to the hospital this morning, both had a nap, and took a really long walk, mostly uphill. Kate's blood count today had no "L"s on it ("low"). All her counts are in the normal range. She has the wrong proportion of neutrophils and lymphcytes but it's still a low. And her cells sizes are a bit high for some counts because her marrow is kicking out some cells before they are completely mature (to compensate for low counts).

Next week they will start weaning her off cyclosporin. It will take about 10 weeks to get off it assuming she doesn't have any problems with GVH. The cyclosporin is what's depressing her lymphocyte production.

Everything is going relatively well. In another 30 days we may get to come home on weekends if everything stays this way.

I forgot to turn the pump on last night so when I woke up this morning she still have a full bag of TPN. Oh well. Sometimes the nurses in the hospital also forgot to turn on the pumps, but those pumps beeped to let them know!

Also, Kate's head is fuzzy, like razor stubble, but I can't see any color to the hair yet.

Wednesday, September 24, 2003 1:30 PM CDT

Hi everyone, I don't have a lot to report. We are just doing our thing, walking and playing and cleaning up and sleeping. Kate only has to go to the clinic on Thursday this week (we went Monday) but I ran out of a medicine and we had to go today anyway to get the refill. But we walked there so we combined two things in one.

Kate's throwing up is better. She's just been throwing up first thing in the morning mostly, although she did gag on her medicine last night and throw up. But overall she's keeping her medicines down much better. Her eating and drinking are about the same, except that yesterday and today she ate a little bit for breakfast, which is new. Maybe the reduced calorie load in her IV nutrition is the cause of that.

Enjoy this beautiful weather!

Monday, September 22, 2003 8:25 PM CDT

Hi everyone, I finally got cable internet at the apartment and I hope to be completely up and running soon. By the way Mom's computer had 111 virus infected files on it, so if you got email from me since we've been at the apartment you might want to run virus check. You can get a free scanner at www.mcafee.com, but you have to buy the software to fix it.

Kate is doing very well, her counts are all good. Her hematocrit is 32 something, and her retic count is 6.5! She has the beginnings of an ear infection, and I'm not surprised since her nose has been running for almost three weeks. Actually I'm surprised it's taken this long. So there's another med to add to the list.

They have reduced the calorie count of her IV nutrition, but I want to keep doing it as it gives her the vitamins and fluids that I couldn't get in her any other way.

Kate also didn't throw up at all this morning, first time ever. But just as we were turning onto 29th to come home from the hospital she just threw up. Maybe it was motion sickness.

Oh, Darryl pointed out that I was wrong in a previous email re. Day 50 being the pivot point for chronic vs. acute GVH, it's actually day 100 (which is my birthday! and which is also statistically important for survival odds).

We got the rest of the bills for August - grand total, $288,000. And that's just the hospital. It's not the doctor's bills or any outpatient bills or any of this home health stuff we get. Wow! Blue Cross is trying to charge us $1200 when we only owe them $300 but I talked to a nice lady at Children's and she's going to work all that out for us. And that lady said that we were one of the less expensive transplants she's seen (she does all transplant billing).

Happy Monday.

Sunday, September 21, 2003 3:06 PM CDT

Hi everyone. We have had a good weekend. Wen did great in his soccer game and the team he was playing had 7 kids from our church on it, so I got a chance to visit with some friends during the game. We went out to the Po Boy Factory Friday night. Wen wanted alligator but decided on the frog legs instead. Wen enjoyed his school's carnival also and then we came down here. Since then we've all just been taking it easy. The boys are on their way home now.

I put some new pictures on the picture page. Blessings, Lesley

Friday, September 19, 2003 12:23 AM CDT

Happy Friday everyone. Kate is doing well. She has entertained everyone at the hospital this morning playing basketball with the garbage can, hide and seek with the privacy curtain, and passing out Tic Tacs. She even gave Rookie (her RNP) a hug goodbye. Of course at the beginning of the morning he talked to her and she got so ugly I had to make her stand in the corner!

Kate’s runny nose and cough were all cleared up when we left the hospital Wednesday and by Wednesday night they were back. So all this is allergies. She’s already been on Zyrtec for a week, so maybe it will kick in. Her blood pressure was good today and her counts were also good. So we don’t have to go back until Monday.

Darryl is on his way down (hopefully right now) and I’ll be going home for tonight. Wen has a soccer game in the a.m. and he wants to go to his school’s carnival tomorrow, but he also wants to come spend the night with Kate, so we’ll be back tomorrow night. I’m looking forward to getting some different clothes to wear. I’ve had the same four outfits on for almost 8 weeks and they weren’t that attractive to begin with.

Kate enjoyed her day with Grandmother and I enjoyed a day shopping. I think it was better just to be out by myself for a while even than new clothes but I’m happy to get us all a few new things for the fall/winter. OK, mostly Kate got new stuff but I did buy Christmas and birthday presents.

I hope you all have a good weekend. Don’t expect Darryl to do an update! On Monday the cable company is coming to run a cable internet line so I will have real service then!
Blessings, Lesley

Wednesday, September 17, 2003 9:30 AM CDT

Hi everyone, we are busting out of here today. Everything's fine. Kate's counts are all down a bit today, so the doc thinks the sample must just be off for them all to be down. Hopefully we will be in the apartment this afternoon.

Kate continues to feel good and smile and talk. Except when her nurse practitioner Rookie came in this morning, and she threw her food menu at him. So she had to go back to bed and she's sleeping now. She threw up more last night (the nurse mixed a bit too much cherry syrup with her meds I think) and a little this morning but has kept her many meds down very well.

She's taking Isradipine (2x/day) for high blood pressure, Acyclovir (2x/day) antiviral, Cyclosporine (2x/day) to reduce GVH, Reglan (4x/day) to help digestion, Fluconozol (1x/day) antifungal, Zyrtec (1x/day) to help with her congestion/cough, and now this new high blood pressure medicine 2x/day but I can't remember the name of it. We cream her skin up with triamcinolone cream 2x/day and protopic 1x/day. My life is meds and vomit. And since she's on TPN she doesn't have to take the vitamin, folic acid, or Tums (calcium).

On day 50 (which is in just one week!) Dr. Sande will begin weaning down the cyclosporin. Day 50 is important as any GVH that shows up before 50 is consider acute and not as threatening. Anything new after day 50 is chronic and a concern. Dr. Sande said that because of Kate's skin she probably would rather not wean her, but that because they can't get her high blood pressure under good control it's more important to do that. And so we will be seeing the dermatologist for PUVA (UVA light) treatments. The light areas are Graft Vs. Host and the dark areas are normal skin. Her skin has just lost pigment in spots where the attacking T-cells have damaged the melanin cells. Mostly the spots are small but they are "merging".

Here's how her skin looks - for those of you familiar with how her forearms looked before - the light areas are increased, and have spread up to her upper arms and across her shoulders/back. She has them on her shins (and now they are quite light with little darker areas) and thighs and her knees look really dark. She has it on her chest but that's looking much better since it's almost all light area now. Anywhere that her skin has been "damaged" is getting these light patches. So everywhere she's gotten suntaned (take heed all you tanners out there!), a scar from surgery, or a scratch from when she was on morphine, or around her central line where the bandages have been wearing on her, is light patches. Her neck is very dark, though, and that might be darkened from the chemo, but who knows. She has a few light patches on her jaw line but it seems to have stopped there and not spread to her face. I finally pinned Dr. Sande down that these spots are permanent. It might be that the light areas will all fill in and look normal (as long as she's not in a bikini). If you've ever seen a white person with vitiligo it's similar to that but the light patches aren't so large. And since Kate's skin was darker to begin with, the light patches are not white, just pink like my skin. She will need sun protection every day, as she would have anyway as a transplant patient.

I hope that we will be pleasantly surprised some day when her skin all looks normal (so add that to your prayer list, and especially that her face is not effected). If it doesn't then it will be unfortunate that the main side effect of this process is so visible. I suppose it could be much worse of course but she won't think so. I can imagine that when she's in junior high she'll hate us and think that having a blood transfusion monthly and desferral nightly would be much better than spotted skin. One of the drawbacks of doing this transplant so early is that she'll never understand fully what the alternative was. But it's fortunate that we will be able to send her to the same school for K-8 then onto Catholic High with mostly the same folks for high school, and the kids she is with will learn early to disregard that.

Here's a funny thing that happened Monday night. Just after midnight a lady walked into our room. I thought it was Keisha (since it was dark I couldn't see) coming for vitals and I said to her "Brenda (nurse) already got her vitals". The lady opened the bathroom door (how the nurses light the room at night) and said "I'm just opening this door to get it light in here" and I said again "She's already had her vitals done". I realized it wasn't Keisha but they have been hiring new nurses so I thought maybe it was another nurse. The lady said "I'm not here for her vitals." I had to ask her what she wanted and she said "I'm here for CPT" and I asked her what that was. She ignored me and walked over to Kate and said "Have they moved you around?" and I asked again what CPT was and she finally said something (I forget what, started with a P) and I said "We don't do that, she's not supposed to get anything else" and the lady said "She's not hooked up to her monitor" and I said, "No, she's not supposed to be" and she said "I'll have to report that" and I said "She doesn't need to be on the monitor, we only did that earlier when she was getting IVIG. What are you here for?" and the girl got snippy with me and said something like "Well, now I can see what's going on with the monitor and put that in my report." Then she walked out and I could hear her telling the other nurses that that lady in there sure was ill tempered and they said I could be that way at night (duh). Well I asked Brenda at 4 who that was and turns out it was the respiration therapist and she had come into the wrong room. And she said *I* was snippy!? She's just lucky I was awake before she gave my child a breathing treatment! And besides she should have answered my questions.

Well, that's a long update, but I'm taking advantage of the high speed Internet here. I hope to get it at the apartment but I have to check that out with the church first. We don't have to come back tomorrow and Mom is coming down so I'm going to take part of a day off and go shopping. No update tomorrow.

Blessings, Lesley

Tuesday, September 16, 2003 11:54 AM CDT

Hi everyone.

Apparantly a hospital visit is just what we needed. Kate is absolutely a different child. She's laughing, singing, making faces, dancing, blowing kisses, talking on the phone, playing (which makes Jennifer the play lady feel wanted again I'm sure since Kate has been so sullen to her). She is still throwing up all the time, and lucky us, they've added Reglan FOUR times a day (to help her digest her food more quickly so she can get more benefit from it) and another high blood pressure drug twice a day which tastes yukky and which can't be given near the other one, which is three times a day. So we get to give that late at night.

I suppose we'll just be giving medicines all day. Right now I have ones to give her at 7, 7:30, 8, 10, 11, 1, and then a repeat of the 7 to 8 and 11 ones at night.

Still her only real problems are the high blood pressure and GVH in her skin (which is spearding a bit in area and the areas that she already has it are become more saturated with GVH). The eating and vomitting and drinking will come along I hope.

Right now she's eating mac and cheese and "falling" backwards onto pillows and giggling with Jennifer t.p.l.

Dad is on his way to pick up his new boat in Clanton so he's going to stop by. We expect to be out of here tomorrow barring a bad result from one of her cultures. She hasn't run a fever since early yesterday so it shouldn't be a problem.

Kate won't let me leave the room to shower but I'm going to try again....

Monday, September 15, 2003 3:52 PM CDT

Bummer! We are back in the hospital. When we were in the clinic today Kate got the chills then started running a fever. It got up to 101 under her arm, but is already back to almost normal. They have cultured everything on her or in her that there is to culture, and done more chest x-rays. No news yet.

Kate got an infusion of IVIG (immuno-gamma-globulin) today to try to get rid of this cough and runny nose that she's had now for almost two weeks.

When we walked into our old room Kate said "My room." She was pitiful for a while, all bagged up and hooked up to all the monitors while she got the IVIG. But she looks petty normal now and has been painting and is now doing a puzzle. Whenever her IV beeps she thinks it's time to go home.

My sister in law came by and stayed with Kate so I could run back to the apartment and get some things. We are told to expect to stay at least 48 hours while they wait for all the culture results and to see what happens after she gets IV antibiotics (she's already had one set of them).

I heard we were on TV again Friday night. Our nurse Jane was at her parent's in Huntsville and saw us too!

Oh well, and the weather is so perfect!

Sunday, September 14, 2003 12:59 AM CDT

Hi everyone. We have had a really nice weekend. Kate was happy to see her brother and Pop and Gran; Darryl and I were happy to get to go out alone for a while.

At the hospital yesterday morning Dr. Sande said Kate had the CBC (complete blood count) of a normal person. She only had one number with an L marked beside it (low). Of course she still doesn’t have the proper proportion of white cells and those that she has haven’t been “trained” properly yet. But it’s very exciting to see her making enough red cells finally.

Kate ate pretty much non stop yesterday afternoon/evening, but threw it all up just as I was laying her in bed. A good old fashioned kid’s projectile vomit, too, so it all came up. But at least her appetite is improving and we can work on the vomiting. She is getting the IV nutrition also.

Today we did not have to go to the hospital. I think it is like day 39, so that makes it about 48 days since we haven’t had to go to the hospital. As long as everything continues as is with no problems, we will probably be able to go only on Monday, Wednesday, and Friday. It will be a while yet before we are allowed to leave the city, though that doesn’t keep us from looking forward to it.

Friday, September 12, 2003 9:39 PM CDT

Hi, sorry for being so late, but it was a very busy day. Kate is in a much better mood since her daddy is here. She stayed awake at the hospital this morning (usually she takes a nap) and chattered away. She ate some Cheerios and peanuts. She didn’t have much of a nap, but she ate some chicken and dumplings and we got the OK from the doc to “eat outside” as Kate begs to do. So we went to Rojo’s down the hill and sat outside and ate an early dinner. In between that eating the home health people came to teach us how to give Kate her TPN, total parenteral nutrition, which is IV nutrition. It will run 12 hours overnight.

The best news is that Kate ate three helpings of chicken and dumplings last night and asked for a fourth, although she just sat with the bowl in front of her. I must say they were quite good.

She only threw a little bit of them up. She also threw up one medicine this morning but hasn’t thrown up any more today. I’ve started giving her the cyclosporin at 7, waiting 30 minutes to see if she keeps it down, then giving Isradipine (high blood pressure med) at 7:30, then Acyclovir (antiviral) at 8. It seems to be helping but it’s a long hour of watching the clock and prolonging the “incidents”.

Dad and Linda are coming down tomorrow and bringing Wen. They will stay long enough for us to get an early dinner. My sister in laws came by today with a gift certificate so we are really going to enjoy our meal!

Keep up your prayers for good appetite, lots of fluid drinking, taking meds nicely, and no throwing up. Thanks everyone!

Ok since I wrote that above the home health delivery FINALLY came. At 7:30. PM. So we finally got the stuff figured out and hooked up about 9pm. As it has to run 12 hours I don’t think we’ll make it to the hospital by 9am. The hospital has nothing but trouble with this company, and so far so have we. But their Huntsville office was the only agency that would get us the insertion sets (needle/tube) we wanted for Kate’s desferal treatments (that removes iron from transfusions). So we have been working with the Hsv office and that’s why we started with them here. While everything in Hsv went like clockwork at home it’s just the reverse here. To top it off I opened up the sterile kit to clean Kate’s central line and I didn’t recognize anything in it! It wasn’t at all like the kits we’ve gotten from the hospital. I couldn’t even figure out how to bandage it, so I quit and got the “emergency” extra kit I’ve been saving. For just such an emergency! I’m going to Target tomorrow to get a kid’s toy organizer to store all these supplies in. They have one like Wen has that matches Kate’s room so we’ll get plenty of use for it.

OK, those are the complaints for today. I’ll take the yukky kit to the hospital tomorrow and have them show me what to do or chunk it and find a company to get me the right ones. Here’s some good news. Kate gets to start brushing her teeth now as her platelets are up. So I bought her a Barney toothbrush and she’s just brushing away. We don’t have to do mouthcare anymore!

Thursday, September 11, 2003 2:13 PM CDT

Greetings on Patriot Day.

We have had a frustrating morning. Yesterday afternoon Kate’s cough got worse, and her runny nose also. She’s had it since before we left the hospital, but it just hasn’t gotten any better, only worse. So we had to sit in the isolation room today, no fun. Kate also threw up her medicines twice. So the third time I just gave her only the cyclosporin, the most time critical medicine. She held it down for 25 minutes, throwing up just after I got the car pulled through the alley to get to the street. So back to the apartment for the last clean outfit she had. (I tried all day yesterday to wash clothes and could never get to the machine before someone else would, and someone also left their clothes running in the dryer for hours. There’s only one set of machines for 8 apartments. The first time I washed it wasn’t a problem, but it was Sunday morning and this place is less inhabited on the weekends. I had taken all the sheets and pillowcases off the beds too and bundled it all up with the rest of the dirty clothes to take downstairs. So I slept with two top sheets and not enough pillowcases. But finally I got them in (had to take someone’s clothes out of the dryer and put his underwear in the dryer) finally last night and today someone folded my first load and dried my second so I’m just waiting for an opportunity to go get them.)

At the hospital they did another viral panel (wire with a swab end up the nostrils) and a more complete X-ray. Usually they do chest x-rays on the unit, but for this one we had to go to radiology. We’ve had 3 trips to radiology so far and were forgotten on 3 trips. But I don’t have the energy to be mad about it. Fortunately one of the nurse practitioners from the hematology clinic was walking by and he got us straightened out.

Her lungs are completely clear and we won’t know the viral panels for several days. But they have all been clear for over a week. So Dr. Sande gave us a prescription for Zrytec allergy medicine. Great, another med. But maybe the snot is what’s causing all the vomiting. When we came home from the hospital today Kate was standing at the fridge looking to see what she wanted to eat and she just started throwing up.

But we both had a full night’s sleep, probably the first in 6 weeks. I’m going to fix chicken and dumplings for dinner, maybe she’ll eat. I fixed black eyed peas last night, one of her favorites, but she didn’t eat a bite.

When I was home last I opened the first bill (July’s??) for the transplant. $53,000. What a bargain! And that’s just the hospital’s charges! I keep close track on all our medical charges, except prescriptions. We had as of last time I went home spent $90,000 plus on medical charges. Insurance paid all but $1600 of that, and our medical insurance is about $1600. Now I haven’t kept up with prescription costs, but I have already this week written checks to Children’s Hospital Pharmacy for $300. If our copays are that much, I can only imagine what the actual drug charges are. Of course if we couldn’t afford the transplant we could still have it, and if we had to sell everything to pay for it anyway we would. Thank the Lord we have insurance!

We got our first mail here day before yesterday. One was a card from someone at Homewood Church of Christ (the church that provides this apartment). Wouldn’t you know it, it was a computer made card. Do all COC people have computers and color printers and know how to make their own cards? I don’t. Perhaps this is the skill they learn that makes up for not having instruments in church J. In any case, they are much appreciated and I’m completely impressed with their computer skills.

Darryl is coming up today since I’m so obviously stressed. Wen wants to stay for soccer practice so I think Dad is bringing him down Saturday (last time I heard the plan, anyway) and we are hoping to talk him into staying a bit so Darryl and I can get out for an early dinner together. My “second mother” Barbara Huckaby Woods’ son James Huckaby works at Highland/Bottega/Chez Fon Fon (he moves around between them) as souz chef and I’ve always wanted to go eat at one of his restaurants. Bottega is within walking distance of us and they have outdoor dining, so maybe we will go there.

Kate is going to start IV nutrition for 12 hours overnight tomorrow, so we will be learning that. Between having to work an IV and trying to give meds at 8pm having someone to babysit/stay isn’t a possibility yet. Look at me, one week of freedom and I’m already trying to break out.

Wednesday, September 10, 2003 12:42 AM CDT

Hi everyone. Kate had a really good day yesterday. She took a good nap then we went walking and she swung at the park. We also went to a drug store to get some gumball vitamins. They are so big I have to cut them in half, but she did eat both halves yesterday. Today she won’t have either.

She had macaroni and cheese and Ranch stew for dinner, but then after I gave her her meds she threw up. Three times. I had to give her the meds four times. The first three times she did such a good job taking them, but the fourth was unpleasant.

Kate slept all night with just one wake up when I came to bed, and woke up this morning in a good mood, which lasted until I gave her medicines. She also ate a bowl of cereal. This was the first time she’s eaten breakfast in a month.

Today at the hospital she got upset at having to lay down to get a blood draw (her CVL only works when she’s laying on her right side with her arm above her head or behind her back) she threw up all that cereal. Then she took a nap. She was eating more cereal when her fluids were done and once that IV beeps she was outta there. But she did walk herself out of the hospital. She’s also been walking down the stairs at the apartment, which is more exercise that she’s been getting for a while.

All her counts are really good. Her crit is about 30, her white count is over 8, her platelets are up there. She did have to get some magnesium today but that’s normal. Her blood pressure is staying high as they are keeping her cyclosporin level high because of the GVH in her skin. So that’s that much more ikky meds to take.

The weather here is beautiful. I have taken my camera out with some black and white film while we walk and am trying to find some interesting pictures to take.

Thanks to Debra Palmer, who I don't even know but who reads the website (I think that's the majority of the readers!) my email is fixed! Others may have sent me the right solution too, but she's the first I read. One small favor to ask, please don't send me any large emails as it's too long to download them. Thanks.

Blessings, Lesley

Tuesday, September 9, 2003 1:26 PM CDT

Hi everyone. We have been to the hospital today and gotten fluids. Kate is still not eating or drinking enough, but her kidney functions are better.

We got the skin biopsy results back today. The light spots on her skin are graft vs. host disease grade 1 and the dark areas are just her normal skin. Since we have left the hospital I haven’t noticed any spreading of the light areas, and the light areas seem smoother and not so “angry” as my grandmother would say. Dr. Sande has given us some other type of cream to use, and if this doesn’t help we may try PUVA therapy which is UV-A light therapy. Since there was no change in her skin when she was on high dose steroids we probably wouldn’t do that again. We’ll just have to wait and see what happens and see if it gets better in the future.

Yesterday afternoon we went for a long walk. We watched the dogs play in the park and we swung on the swings. Kate had some soup for dinner and I had some delicious BBQ that some friends from church delivered. We got all bathed and dressings changed and cream put on and even took the medicine pretty well (but not so lucky today). So Kate sat in my lap and went to sleep while I watched a movie. We actually managed to sleep in our own beds from about 11pm to 7am. And now Kate’s taking a nap and sleeping in her bed.

I’m sure this afternoon we’ll be out walking more.

Re. My email – maybe someone of you out there can help me. I am using Outlook Express on a PC and connecting with NetZero. I download my email from Comcast.net. I can download my emails but not send any. Selecting to receive using authorization doesn’t make a difference. At the hospital I had to check that option to logon using a secure server, but when I check that here I can’t download emails. Any ideas? I get this error message:

The connection to the server has failed. Account: 'mail.comcast.net', Server: 'smtp.comcast.net', Protocol: SMTP, Port: 25, Secure(SSL): No, Socket Error: 10060, Error Number: 0x800CCC0E

Monday, September 8, 2003 12:08 AM CDT

Hi everyone. Sorry for not putting in an update yesterday, but I just couldn't manage it. It takes so long to get on the Internet through the phone lines that I couldn't do it. Right now we're at the hospital in the outpatient area of the SCTU and I'm using a computer there.

Kate is doing well, she ate a good bit more and drank more yesterday afternoon than she has before. They told me today that if it wasn't for the fact that she wasn't drinking enough and needs fluids every day, we wouldn't have to come every day.

If we are awake, we are outside or at least talking about it. We took a long walk yesterday after Darryl and Wen left, then ate some dinner and went to bed. Kate did better sleeping yesterday than any other night since she's been off methadone, but it wasn't anything wonderful. Maybe each night will be better.

The weather is wonderful, once again a reminder that God's timing is perfect - if we had gotten out earlier, it would be so hot although we'd still have to walk.

Keep praying for the meds to go down easier and for Kate to sleep better.

Saturday, September 6, 2003 9:32 PM CDT

Hi everyone! We are in our apartment now and Darryl and Wen are here. We sat down tonight to a real dinner around a real table and I really enjoyed it. The apartment is in a GREAT location. It’s on 29th St. S just off Highland Park. See the main page for address. For those of you that know Birmingham you know we are in Highlands. If you went to my sister in law Jennifer’s wedding, then we are just around the corner from the Donnelly House. There are three parks (that I’ve found so far) within a very short walk of us and there is a convenience store and a pseudo-Greek pita snack bar thingy and a restaurant called Rojo’s just around the corner. We had take out last night and it was great. Too bad we couldn’t actually eat there as they have outdoor dining and the weather is perfect – who’d think this was still Alabama in September? Kate has to keep her mask on. I fixed her a sippy cup to take on our walk last night and didn’t realize until we got outside that she couldn’t drink from it!

The sidewalks are bumpy but Kate doesn’t want to do anything at all but go outside and ride in her stroller. She already knows what it looks like when we turn onto 29th and she says “No home!” Today we took her to a park and she got to slide once and then swing (shhh, don’t tell the doc). She loves to look at all the many many dogs that get walked around here. Today at one park there was a wedding, and after we walked by that we saw another newlywed couple riding in a horse carriage. They looked like “This seemed like a good idea at the time, but right now we’d really rather be on the honeymoon!” The bride had her shoes off, I totally commiserated.

The apartment itself is old. It’s a one bedroom and furnished a la lake cabin. But it’s free and except for the carpet, clean. I bought a rug at Walmart today to cover the carpet where Kate would play and that makes it much better. My dad and stepmother got us totally set up for food, and I will try to cook Kate some of her favorites – chicken and dumplings and Ranch stew. Lou Sherer suggested custard but I don’t know how to make it! It’s like fried chicken – why make it myself when my grandmother makes it so much better?

Darryl took Kate to the hospital today. She only had to get labs and fluids. We had planned on blood also, but her counts all went up really well and she didn’t have to have it. He only had to stay about 2 ½ hours.

Her attitude is completely different since we got out of the hospital. She talks so much and smiles and played in the sink today. Right now she’s “helping” me type this. Mom lent us her laptop to use here and she likes to move her finger around on the mouse pad. Her appetite is better, but nothing near what it needs to be, nor is she drinking enough. But this is such an improvement, we’ll take it.

The worst problem now is getting the meds down her. She of course hates it, and usually throws up afterward. Wen got her to take her vitamin today by taking one himself but I can’t give him the other meds to set an example for her – but since I give her the cyclosporin in chocolate milk, I can try that with him.

I thought today of so many things I wanted to say in my update but now I suppose I’m so overloaded I’ll have to try to condense it:

Here are the things I miss about the hospital: Someone to cook, someone to clean, someone to take care of Kate at 2am (D had to sleep holding her in the chair), being able to leave Kate while I get something done (like laundry – the laundry here is in the basement and it will be a challenge to get Kate and the laundry down there). I miss the nurses to decide when Kate has thrown up so much of her medicine that she needs more. Knowing that everything we touched or walked on was clean. A high speed Internet connection.

Should I even list what I don’t miss? That smell. Having someone taking something (vitals, blood, samples) at all hours. The terrible food. The lack of privacy. The confinement. Having to go down the hall to the bathroom or shower. Small scratchy towels.

I walked today for about an hour, all the way to Southside and back and stopped and had coffee and went to Walmart. I put on makeup. Kate got to see her Pop and Gran and her Grandmother this weekend. Kate got to say “Eat!” and stand at the open refrigerator door and say “Ummmmm”.

Re. Some previous update – we expect to be here 3 MONTHS not weeks. After a while we will get to go home on the weekends but who knows when that will be.

Also, something funky has happened with my email. I’m missing everything from yesterday and today, so if you sent me something and I need it, please send it again.

Thanks everyone, pray for those meds to go down easier. I suppose Auburn is beyond our prayers at this point.

Friday, September 5, 2003 11:08 AM CDT

Hi, have to make it quick as we are about to have Kate's going away party. We are all packed and trying to move it to the car.

When I know the address to the apartment I'll put it on the website.

Thanks everyone for all the many many cards and emails and prayers. I can't possibly send everyone a thank you note (my grandmother and mother are gasping in horror here) but it's not because I don't appreciate it all - I just can't keep track!!

Keep us in your prayers, we are not at all near completely healed but at least don't require constant care.

Blessings, Lesley

Thursday, September 4, 2003 1:55 PM CDT

Hi everyone,

Kate and I will be leaving the hospital tomorrow sometime mid morning for an apartment. The lady from Homewood Church of Christ called last night and said they had a one bedroom apartment available and she's holding that for us. It's in 5 Points off Highland Ave. This will be a great area for us to take walks and have lots of things to see. We will be coming back to the SCTU every single day as outpatients. I don't know how long we'll have to stay each day, but we'll find out! I also don't know how long we have to stay in Birmingham, but I am planning on 3 weeks.

I'm so fortunate to have a family that sells disposable supplies for a living. I put in big order for paper towels, toilet paper, Chinet, cutlery, cups, garbage liners and all sorts of cleaning supplies. If I could have only married into a family of grocers we'd never have to pay for anything. Darryl will bring down any other things we need. I think he's going to bring our home computer so that I can have my email and do the updates.

Kate ate about 4 bites of Surin thai noodles today but she just threw everything back up. They've given her some fluids today as she didn't drink enough yesterday. But they don't seem too concerned. Her blood pressure has been so high lately, they keep working on that too.

The nurse practitioner biopsied two places on her arm - a light/pink place and a brown place. I hope that the results will tell us exactly what's going on.

I have often said that a trip to Children's Hospital is just what I need when I'm feeling pitiful and put upon. There are so many children here who will never get better, who have never and will never eat or smile or talk or walk. It makes me feel like Kate's illness isn't that big a deal in the grand scheme of things. Surely I can take care of my vibrant, beautiful daughter if these other parents, who often look like they don't have the resources or education to care for healthy kids, are so lovingly raising their very ill children.

And so I find myself again being thankful for this ordeal that we are going through. I got a very sad email from Lenny, Jorrit Zeldenthuis' aunt. Jorrit is the 6 year old DBA patient in the Netherlands who had a transplant about 5 days before Kate from his infant brother. Jorrit has had many many health problems and they all felt like they needed to do the transplant as soon as possible. They got back Jorrit's FISH test results (although his test was different than the fish since he had a same-sex transplant) and he is making his own blood cells and not his brother's. So they will have to continue on through this process of recovery without even the encouragement of knowing that at the end of it he will be cured. Please please pray for this family as you have prayed for us. I am so terribly sad for them. I hope that there will be options for them. Perhaps the baby just couldn't donate enough stem cells for Jorrit's size, and it could work later on.

Oh, also pray for Kate to sleep better, especially at night. Last night she went to sleep at 10:30 but woke up at 11:30 with a tummy ache but magically felt better when I put her in my bed and she played and talked until I got pretty tough with her at 2am and made her go to sleep. Then up at 8am and now it's 2:30 and she still hasn't gone to sleep. Mommy is tired!

Wednesday, September 3, 2003 2:03 PM CDT

Hi everyone. 37 days and counting. Dr. Sande says we will probably get to leave on Friday. The social worker is working to find us a place, but if she can't find something nice by then I told her we would put ourselves up somewhere until something comes open. Kate has been taken off IV nutrition as of today, although if she doesn't eat more the next two days they will probably teach me how to give this to her at night at our apartment. No problem.

Kate hasn't eaten anything today but about two bites of spagetti. She asked for fries and I went to McDs (or B-Donalds as Wen always said) for her but she would only pick up the burger a couple of times but not eat. And she has thrown up a good bit today. When Kate throws up it's a lot of clear mucous, which is the mucositis healing.

Her sleep is all messed up. I finally got her down last night about 12, then the nurse came to hook her up to her med at 12:30 and it woke her up. Again I poked her out the door to Keisha and I think they came back in about 1:30. I had to put her in bed with me to get her to sleep though. Since she was up by 8:30 this morning and is just now getting down for a nap, maybe tonight will be better.

Her weight today was what it was when we arrived, although I suppose when she finally gets rid of all this fluid and gas she should be weighing less since she hasn't eaten. Her white count is the same as yesterday. Her red counts have dropped. She's making red cells but it's just not enough to keep up yet, and the same with platelets.

Re. her skin, Darryl has gotten our dermatologist from home that biopsied her arms earlier to fax over the pathology report. To make me feel better they are going to biopsy her skin again tomorrow. It's possible that this spreading discoloration is just her skin turning back to its normal color after being darkened by chemo, which is what Dr. Sande thinks. But her skin has never been that light, and the change looks like just a spreading of what's already on her arms. So we'll find out tomorrow.

Keep praying that she'll eat!

Tuesday, September 2, 2003 2:28 PM CDT

Hi everyone, I will start with the best news - Kate ate 11 bites of a McDonald's cheeseburger and 3 french fries and about 2oz worth of the ice out of her coke! I had started to despair this morning that she would ever eat, and here she goes. Please pray that this keeps up! I guess I'll be going to McDonald's for dinner too. Her doctor and the transplant coordinator went out for the lunches today.

Yesterday after I wrote, Kate slept until about 8:30pm. I got Keisha to come in and try to wake her up, which Kate hated. But finally she did get up and played for a while, then we did the whole bath and dressing change and creaming up. But then Kate could never get to sleep even after watching the same Barney tape twice, so I just poked her out the door to Keisha and went to sleep myself. Sometime around 12:30 Keisha brought Kate back almost asleep. But she had a restless night, occasionally crying out and finally this morning I think I figured out that her belly button hurts, but it has only bothered her once more today.

So Kate got into bed with me but then once all the oral meds came (5 different ones) she spent a good bit of time throwing up. Then breakfast and more throwing up. So I got her dressed and creamed up and she went back to sleep.

When Kate woke up from her nap she was in a much better mood. We have been walking and I even chased her and got kisses and she giggled! We also put a couple of her small chairs in the hallway. We sit in them, and throw the ball down the hall after we say "Ready, set, go!" and after I throw it we jump up and run to catch the ball. This is apparantly a game she and her daddy made up this weekend. And we walked more and had a tea party with Jennifer the play lady, then the food came. First she fed her pull-toy dog and the happy meal toy Barbie a fry, but eventually she started eating the cheeseburger herself as if it hadn't been three weeks since she ate anything!

So she seems to feel much more like herself and has been talking more a smiling.

Kate scratched her head up pretty good when she was itching from the morphine, and so her head is still scabby in addition to the 5 o'clock shadow/stubble of hair she has right on top of her head (it never fell out completely). Her stomach is much smaller, I think it might be back to normal. It is also scratched up but almost healed. Her belly button pokes out still and I believe she has a hernia there from how distended her stomach was. But it will heal itself like it did when she was born. The scars on her neck and side (from the port removal and central line insertion) are healed up. She still has some bubbly red rash on her shoulders, neck, and around her elbows which is graft vs. host (GVHD).

The thing that's worrying me is that the discoloration that's on her arms and shins (which has been there for months and was biopsied and diagnosed as GVHD from transfusions) has spread over the weekend to her thighs and jawline. I hope she doesn't get this on her face. The hope was that the rATG medicine would kill the T-cells that caused that. So now all of them are stumped as to what it is really and why it's spreading. I think that it's not the dark spots that are appearing, but rather the light spots. It's like the pigment in her skin is disappearing in spots and leaving baby pink skin. Like that disease that Michael Jackson claims to have - I'll have to look into that and see if white folks can get it.

So Kate is sitting in the bed now playing with the cars that are supposed to be Wen's. I am hoping she will fall asleep so that we don't have a night like last night.

Please pray for two things: that Kate will have a voracious appetite (and that we'll know for what) and that this skin thing will go away.

Blessings everyone, Lesley

ps. her white count went down really well over the weekend, down to 2.80, but it's up today to 3.06. Her cough is much better today.

Monday, September 1, 2003 8:04 PM CDT

Hi everyone, this is very late so it will be short. Kate never would take a nap today with Darryl so he didn't have time to do an update.

Here's the big news for me - Kate has a reticulocyte count of 4.5! This is the count of new red blood cells - Kate's has always been 0.5. So although Dr. Sande has said she's making platelets and some red cells, this confirms for me that Kate is cured of DBA.

She seems like she feels good, she played with me a even gave me a kiss. She nibbled a cracker and ate 3 goldfish crackers, but otherwise eating and drinking are still a problem. Her cough, which has faded and worsened and faded again, has gotten worse so they'll do another chest xray tomorrow. She also has a runny nose, so maybe she has a little cold or never got rid of her pneumonia.

Kate is on completely oral medications but still gets IV nutrition at night.

Goodnight, Lesley

Sunday, August 31, 2003 6:57 PM CDT

Hey Everyone... It's me again... Lesley was able to go home for the weekend so I am here with Kate...

Let me catch everyone up... Wen and I came down Saturday morning to relieve Les and let Wen visit for a short time with Kate before he and his mom returned to Hunstville... Wen and Kate both were excited to see each other and did the typical stuff... Played for a short time and then went their seperate ways... Just to prove my point that brother and sister did do the typical thing, Wen did have a gift here which consisted of several little cars and trucks... Well Wen is gone and the trucks and cars are still here, who do you think has them?

Kate's status is good... She continues to improved!!! I was yet again able to see an improvement once I got here... Currently the big thing is for here to start eating... I have spoken to Dr. Sande and she expressed that this was the next big hurtle... Kate is now taking all of he meds orally which is a really big deal... This is the initial step to get out of here and into an apartment...

Dr. Sande came by this morning as always for here morning checkin, Kate was not in the best of moods due to being woken up. This is not uncommon but the nurses and Dr. Sande are wonderful; if ever I am asked for medical advice this is by for the best place for medical care. Dr. Sande and the staff here truly make this experience much eaiser to deal with and I am thankful for them.

Other news; Kate's white count this morning was down around 3000, no alarm though. Dr. Sande give me the news and also explained that it was not uncommon for a tranplant patient's count to drop, she informed me that it would go back up, it just will take a while... Dr. Sande also beieves that Kate is producing other cells as well, this means Patelets and Red cells. Kate's patelets counts have been going up daily. And her hematocrit and hemoglobin
counts also seem to be improving... This is all good news and if so makes the past weeks worth it (No more transfusions !!)

Everyone keeps asking if we need anything, my simple rely is no just keep praying and thinking of us. Really everthing is seems to be taking care of itself right now, our main need is truly your continued support through pray. Lesley, Wen and I really want to see Kate moved into an apartment, hopefully this week, so keep praying for Kate's continued improvement and that she will get her appetite back soon (Would love to be updating this next weekend from some other location other then Stem Cell Unit)!!!

Now, as for the Auburn game, it can be put this way... USC kicked Auburn's rear!!! And that that is saying it in a mild manner.

War Eagle !!!

Darryl

Friday, August 29, 2003 1:45 PM CDT

Happy Friday everyone. The FISH test came back that Kate has 100ales cells in her blood. Thereby proving that male blood in your veins makes you a grouch.

The form they send with the sample doesn't tell the lab why they are doing such a test, and when Dr. Sande called the lab, the lab folks were afraid Kate might have some horrible genetic disorder! Everyone has said "you much be so glad/relieved" but if you don't expect any other sort of results then it's just one more thing to check off.

Kate is doing MUCH better. Last night she was asleep and I was outside the room (they turn the monitor on). We heard her wake up, and when I went to change her diaper, it was FULL of poopy. I think it must have woken her up. It took two of us to change it, and then I weighed her and she weighed 1/2 a kilogram less! And her stomach was much smaller. It's still a bit bloated, but she had another poopy today and she weighes 0.3 kg less today also. She stayed up a good while playing with Keisha (refusing to let me even look at her, of course) and Keisha even got her to say Thank You, which are two words that have never passed her lips before.

Dr. Sande has reduced her methadone to once a day, and now it's oral. She is going to slowly move Kate to all oral medicines. Kate has been awake a good bit more yesterday and today with less pain medicine. They have to wean her slowly so she doesn't have withdrawals.

Kate's rash looks better, but it's still there. GVH is when Wen's T-cells attack Kate's body. It's of varying degrees of concern.

Her white count is down to 4.something, which is still OK as she's making plenty of new cells. Dr. Sande said she had a lot of immature cells in her blood and the counts would level off sometime soon.

Kate at about 3 sour cream and onion chips yesterday, and this morning she put a piece of cheese toast in her mouth but it was too crunchy to eat. And she touched a slice of banana. Whooooo.

Mom sent us a tape of mostly Kate at the beach in July. We watched it this morning. I realized while I watched it that I've gotten so used to a Kate that doesn't smile or talk much or play with any energy (she sits and dabs at paint or such) and how much I missed the old one. Kate must have thought the same thing too because ever since she got up she has been talking more, moving more, and even smiling several times. I could see it in her face, like "Hey, I forgot I could do that, let me try that again." Darlene the clinical aide danced for her just before naptime and she smiled the funniest "Ooh look at the crazy lady!" smile.

I put some new pictures on the photo page. Dad said I should, but you have to know that I don't have a digital camera, so I have gotten the ones I have from the transplant coordinator who takes them and emails them to me. Then I have to shrink them and so they come out a bit fuzzy. I haven't gotten any of my own pictures developed yet but when I do and when I'm home to scan them in I'll put those out. I can only have three on the photo page. Kate will not smile for the camera, and the digital camera has a delay on it, so if she is smiling, by the time the picture takes she has noticed the camera and stopped. Plus she wants to work the camera herself so in most pictures she's grabbing for it. She has on a hat because she has scratched up her head, and then she picks at the scabs. She even sleeps in it.

Darryl and Wen are coming down tomorrow, and then Wen and I will go home tomorrow evening. I'll be back on Monday. I hope Darryl will leave another of his sweet updates on Sunday and Monday. Those of you who know him think he doesn't talk much (unless you start talking computer/sports/work stuff and then oh boy) but now I think he has blown his cover.

Have a good Labor Day weekend, Lesley

Thursday, August 28, 2003 12:43 AM CDT

Hi everyone. OK I'm better today.

Kate enjoyed playing with the volunteer yesterday, especially since Tammy was an ex-Army fitness instructor and didn't mind carrying her up and down the halls the whole time. But Kate got sleepy and so I cut the time short to get her bathed and into bed before she fell asleep completely. I did go out and eat at McAllisters all by myself which was nice, and brought back some pie for my before-bed chocolate, which I've gotten in the bad habit of needing.

When I took Kate's clothes off I saw that she has a raised red rash. Where she already has graft vs. host disease, her arms and up to her shoulders, and her shins and the "v" under her neck (everywhere the sun gets, basically) are splotched with brown spots. When she gets mad the areas between the brown spots turn red. So this rash was like the red parts bumping up, but it it also on the back of her shoulders. The doc on call came and looked at it and said "yep, looks like GVH, put some hydrocortisone on it" and that's pretty much Dr. Sande's attitude too. They don't seem too concerned about it. Dr. Sande says we'll treat it with topical steroids and it will probably come and go for a while. If it comes and stays they will give her oral prednisone (fun fun fun).

She slept a while, then about 9:30 woke up and said "Walk!" so I got her up and out and since Keisha was here by then she refused to have anything else to do with me. If I even walked by she raised her hand up and growled NO at me. So she and Keisha played until about midnight, when Keisha brought her in almost asleep and put her in bed. I think they even watched a Barney tape in the outpatient area.

Dr. Sande reduced her methadone to once every 12 hours (we've gone from 6 to 8 to 12 in about two days) so that means that the nurse only had to come it at 12, 1, 2, 3, 4, and 5. I convinced Shannon (the night nurse) to change her diaper at 5 instead of 6 so I actually slept without waking from sometime after 4 until about 8:30 when the day nurse came in. I even slept through the doctor and nurse practitioner's visit. Kate gets a pretty thourough going over from today's nurse so it woke her up and we've been up since then. Kate has been outside fingerpainting a bit with Jennifer the play lady, but apparantly today is Sherri the nurse's day to be favored with Kate's approval, which means no one else can be.

I sat at the nurse's station by Kate with my breakfast and after a while Kate decided she wanted it. So she sat with it in front of her (cheese toast and a banana) but never ate any - still that's progress. But later on she did eat two sour cream and onion potato chips and they had to order more. Unfortunately she has now gone to sleep and the new chips just came in.

Markice, the 10 month old baby here, was out in the hall in his walker and he and Kate have a thing going on. She followed him around and looked at him and talked to him, and cried when he had to go back to his room.

Dr. Sande says she's got a perfectly respectible white count (8.something) and her other counts are looking good. Her outputs are still nice, but they are restricting her IV fluids still to try to "dry her out". That makes her blood more concentrated and you have to remember that with her counts.

When I logged on there were 9991 hits on the website, so I bet by now we have crossed 10,000. I'm thinking that's about 200 people a day. Thanks everyone for being so interested in us and praying for us. My mind doesn't focus so awfully well so this is a real way for you to help us.

Oh, speaking of help, my cousin Bryan Balentine (an ER doc at UAB finishing up his residency) brought me a good salad supper the other night, our minister Larry came by yesterday and didn't scare Kate too badly, and my friend Drake Nunn who works for Children's now came by today. Also Joel Barnett, who is the CFO here, came by last night - his wife is a friend of my mom's who grew up in Florence. Did I miss anyone? Melody, my sister in law, is on her way here with an emergency order of spagetti and hopefully a paint with water book. When Darryl was here this past weekend a work friend from Ft. Rucker came by with a huge bag of books, toys, magazines, and probably more things that got eaten by the time I got here.

I'm slowly working my way through my long list of thank-yous. If I miss you please know it's just a mental deficiency on my part, but my gratitude is intact.

Wednesday, August 27, 2003 12:47 AM CDT

Hi everyone, it's day +21 now. Kate's white count is down to 10.19 but that's still good. Her hematocrit has only dropped one point in two weeks, which is unprecedented (sp?). She still likes to get out of the room (today she painted with q-tips and played some play-doh) but she's still pretty grumpy. I had to make her stand in the corner today because she threw a cup of paint instead of just saying "No Thanks". So I guess if you are punishing your kid in the SCTU it means they are getting better.

She still won't eat, and in fact she threw up today when I put a plate of plain spagetti noodles in front of her. Her stomach is still huge although they have quit measuring it. She doesn't seem to have any pain and I have asked Dr. Sande to continue to reduce the methadone as best she can to get her off of it. Maybe this will help.

Kate has a cough and runny nose today too, so they did another chest x-ray. It turned out to be an improvement over the last one, so the cough doesn't seem to be too much of a concern.

Her fluid output is still very good. So it seems like everything is going well for the situation we are in. Eating and drinking is the big thing right now, so please pray that she'll have an appetite and that we'll be able to figure out what she wants to eat.

Several of you have commented that we sound tired. We've been here 30 days now. The month has flown by but the days drag on forever. I'm sick of reading and there's nothing on TV and when I do turn it on Kate is reminded of how much she likes Barney. I feel very uncreative and so it's hard to enjoy doing my scrapbooking. I'm eating even though I'm not at all hungry because I'm bored. I've done good with my exercise each day, but 45 minutes of exercise can't make up for 23 hours and 15 minutes of sitting or lying all day. It takes all my effort not to get angry and start yelling at the nurses during the night. Truly not an hour goes by that they aren't in here doing something, and the hour before and the hour after 12, 4, and 8 are constant interruptions. I suppose a lot of this has to do with the "phase" that we are in - nothing much happening, a lot of tiny incremental improvements, the next thing to look forward to is leaving so it makes me impatient. Oh well, nothing to be done about it but try to make the best of it. I'm going to take a nap now and later I'll probably feel guilty for unloading on the website. The social worker has started a new volunteer program and I'll get a volunteer for 2 hours tonight. Maybe I'll go walk around the block, that should make me feel better. Maybe a Big Mac for dinner....

Well here's a bit of excitement that just happened - Kate is on the oxygen sat monitor when she sleeps as her sat has been wanting to drop occasionally, so they blow oxygen at her if needed. She was sleeping on my bed and her level tanked down to 66 suddenly. I picked her up and she wasn't breathing (don't freak, she's fine now) but got a breath quickly. I put her in the bed with the oxygen blowing on her and they've been in here listening to her and she's fine. I had asked for some fenergen (sp) or Benadryl to help her with the nausea (she threw up again when the nurse gave her some medicine) and she just got it a little too close to her dose of Methadone. She's fine.

She was painting with dark red paint which is all over her sleeper and hands and face, so everyone who comes in freaks out at first thinking she's bleeding. Hah.

Tuesday, August 26, 2003 1:09 PM CDT

Hi, I have nothing much to report today. Kate is still doing well, still has a good white count (although it has fallen a bit since she's off the booster medicine), is holding onto her platelets a bit longer, and feels about the same as yesterday. She still won't eat. She did walk around a lot more today pushing her baby stroller.

Dr. Sande is changing her methadone to every 8 hours instead of 6, so maybe she'll be awake a little more (although she sleeping now). Otherwise it looks like another day like yesterday.

The FISH test results won't be back until tomorrow at the earliest, possibly not until Friday.

No news is good news I suppose. Blessings, Lesley

Monday, August 25, 2003 1:14 PM CDT

Happy Monday Day +19 everyone. Kate continues to make small improvments. Her stomach is about a centimeter smaller today, and it's definately softer since I saw her on Friday and also it doesn't seem to hurt her when I pick her up or change her diaper.

She slept late this morning and when she got up she immediately went "outside". She sat at the nurses desk and painted some, then blew bubbles. I went to the little support group meeting with a couple of the other moms and a grandmom, it was nice to chat. When I got out they had pulled the child-sized table and chairs from the parent room into the hall and Kate was playing with Play-Doh. She even smiled a little bit, but mostly she's fairly grumpy and growls a lot.

She has been unhooked from her fluid IV and currently is only hooked up to the syringe pump for some medicine or another, but for a good bit of this afternoon she will be untethered! I hope I can get her to walk during that time. She is also off all the monitors except the oxygen saturation and that's only for when she's sleeping. Kate is negative on fluid output (more out than in) and that's good. They redid her chest x-rays yesterday and saw that the fluid in her torso is decreased, but also that there's some fluid left in her lungs. Probably she had pneumonia last week (which would account for the coughing) but as she was on the antibiotics she would have had anyway, she's fine. Dr. Sande has put her on something else (vincomyacin?) to help clear the last of it up. I've been so worried about infections but it doesn't seem to be such a "lock down" situation as I thought it would be. One of the nurses told me that a while back they had a virus going around the unit and they made all the parents even sleep in gowns and gloves and masks and everyone went around sweating the whole time. Kate is off of isolation as of yesterday so we don't have to gown and glove anymore.

Our goals now are to get her to eat and exercise. Dr. Sande mentioned the "d" work (discharge) this morning, and if Kate continues to progress maybe we can leave the hospital for an apartment next week.

Her white count yesterday was 21.59 and today has dropped to 16.27, which is expected as they have taken her off the boosting medicine. They continue to tweak her medicines based on her bloodwork but I never mention that as I rarely remember what changes they tell me they make.

Last week there was a thunderstorm that fried the cable for most of last week. It came back on maybe Thursday or Friday, but was really snowy. I notice today that some channels are OK but many are hard to watch. I bet there are a lot of unhappy kids (and parents) here. I noticed that the NICU waiting room, which usually has a couple of people sleeping in it, was empty while the cable was out.

Blessings, Lesley

Sunday, August 24, 2003 6:09 PM CDT

Hi everyone, just a quick note. Kate's white count was something like 21.0 today, way over normal. But none of these cells have been "educated" on what they can fight, so she's even more susceptible than a newborn baby (who gets some of the mom's immunities). She's going off the white cell booster, and they are also going down on her methodone dose. Apparantly the standard dose was a bit too much for her and she has slept most of today and last night, although not peacefully. Her oxygen sats are getting much too low and so she's getting "blow-by" oxygen - oxygen blowing over her face while she sleeps and that keeps it up above 94%.

She had another set of xrays and everything is looking better. Less fluid, less gas. She ate 7 macaroni noodles this afternoon!

Darryl is on his way home and I had a good weekend with Wen. I got a manicure/pedicure, we went out to eat all weekend, Wen and I went on a hike/tour of 3 Caves (which is really just an old limestone mine/quarry in Huntsville), rode our bikes to Chili's and Party City and Barnes and Noble, and went to the Animal Planet Expo today. Wen was on his way back the expo with our neighbors when I left. The only bad part was that after I finished my manicure/pedicure and was feeling all pampered and relaxed, while I was under the lights drying, a commercial came on the radio - for Barney Live. Complete with Barney singing and everything. Ah!!!

Saturday, August 23, 2003 1:16 PM CDT

Hey everyone, this is new for me but I wanted to let everyone know that Kate is doing well... Her stomach is still swollen and really large, her belly button wants to poke out!!! Her white count this morning was over 14 (14,000) which is great, Dr. Sande explain that the meds she is taking is helping her body generate white cells and they will be discontinuing that after today (this is not uncommon)... They have also took her off here pain meds given via central line as well..

However with that quick status on Kate following is what we have done while mom has been away getting some much needed rest, although I am sure she will have found something at home which I am not doing correctly to tell me about...

Kate sleep most of the early evening Friday night after she had her bath, however at about 10:30 PM she woke and was ready to play. We played on my bed for a short time and then she decided she was ready for a stroll. So with that we disconnect everthing and put on our funny little yellow growns (I hope no one takes a picture of us) and ventured out into the great hallway, folks this is a hallway which by now I and I am sure Les could describe in complete detail. After strolling for short time, which by the way is really good for Kate (it helps get her body active again) we sat at the nurses station and blew bubbles till around midnight at which point we sat on my bed and watched Barney and she had sips of water (she actually asked for it, wa-wa). This lasted until around 1:30 AM or so...

From that point on Kate got what I think is best best sleep I have seen here get in a long time, she rested peacefully and did not wake when the nurses came in or when the alarms on the pumps went off. No matter how hard the nurses attempted to be quite I was up, I was pressing the nurses call button when a alarm went off and cutting the alarm off itself before Kate was awaken, it was worth the hassel though. By the way this was first time in quite a while that I could see my little girl act the way I remember her, her phases, mannerisms, the way she looked while asleep etc. It was great to see improvement and to know that soon this will be behind us.

This morning started out typical, more bubbles and more strolling, although Kate is sleeping now... She still has not eaten but is drinking juice and water on a fairly routine basis.

Our next big hurdle is coming up on Monday, the FISH test. Not sure what FISH stands for but it will tell us if Wen's marrow or Kate's is producing all these great white cells, pray that it is Wen's. This means that we are well on our way.

Well I have rambled enough, for those of you that know me please don't be too critical of the grammar, incorrect spelling or any thing else, you know this is not my thing and for those that do not know me well don't tell too many jokes...

Keep prays and entries coming, we continue to need your support... By the way I read though all the entries every night and I am amazed at all the people leaving notes...

Also, to Les and Wen because I know Les will be checking to see if I updated the journal... I love and miss you both can't wait till this is all behind us and things can be normal...

Darryl

Friday, August 22, 2003 1:19 PM CDT

Well you just won't believe what Kate's white count is today - 4.5. At the low end of the normal range. Of course, it's great but it's still risky for her as it's all "newborn" white cells and she has no built up resistances to any infections. She will have to get all her immunizations done again, bummer. I haven't asked when we are breaking outta here yet, but I know we'll have to have Kate off the pain meds and eating so there's no sense in asking yet. And with Kate, if you try to encourage her to eat (or do anything) she gets the idea that something's up and she ain't playing along. So this could be a slow process. We have been here 25 days, and the average stay is 45. So be patient!

My friend Beppie brought Kate a Barbie picnic set with dishes and cups and such. So yesterday we had a little picnic with her baby doll and some banana, cheese sandwich, and apple juice. She didn't eat any of it but she did manage to sit there with food in front of her and only threw up once. Progress!

They are weaning her off the phentinal (sp?) with methadone, hoping that it will help get her bowels moving while not hurting too much. She had a pretty uncomfortable night last night and finally at 5:30 this morning I had to get her some drugs so she could rest. But when she got up around 10:30 she got right up and outside and walked and played. She's nibbled about 1/4 of a saltine and actually ate a bite of orange. She threw it up, but still it's progress that she'll even try to eat anything.

Her stomach is a few cm smaller. She still has diarrhea and now her bottom is getting a bit raw from it. She hasn't run a temp in a while. Her blood pressure is still up there and probably will be now that she'll be hurting a bit more in her stomach. All the rest of her counts are good, but they are still going to give her platelets as there is some blood in her stool and they don't want her to be bleeding in her digestive tract if they can help it.

Darryl is on his way down now, and hopefully I'll make it home to see Wen's practice soccer game. I'm looking forward to getting a couple of different clothes to wear and sleeping in my own bed with no interruptions. Wanna bet I can't sleep at all?? When I left last Saturday to stay at the Burnette's I missed Kate so much! But I also miss Wen and Darryl. Mostly Wen since Darryl will talk to me on the phone for more than two sentences whereas Wen won't. It's probably easier for me than Darryl since he's at home and it's obvious that we are missing, whereas here we are out of space and time and it's so wierd anyway that why should we have our family together? For those of you at church reading this I won't be there Sunday morning so that I don't bring any bugs back to Kate, but I'll be missing you.

I hope Darryl will update the site while I'm gone. If not, don't assume the worst! Enjoy your weekend.

Thursday, August 21, 2003 1:48 PM CDT

Hi everyone. We are having a very good day so far. Kate's count this morning was 1.81, more than double what it was yesterday. That means it's the third day of counts over 0.5 and she is officially engrafted! Yea! I don't know if we would say she engrafted on Day 8 since that's the first day she had some count improvment, or day 11 since that's the first day of the start of the upswing trend, or day 15 which is today.

Dr. Sande will do the FISH test on Monday to confirm that it's Wen's marrow but since Kate never made white cells like this on her own, I have no reason to doubt they will be.

Kate feels better although her stomach isn't improved. She also has a cough but it's probably just the fluid in her lungs working itself off.

It was an OK night last night, although I think Kate is fed up with the nurses and doctor as she protested every time they came in last night. This morning when we got up, she sat up in my bed for a while, then asked to play. Instead of putting her on her mat, because the monitors don't reach and her blood pressure has been too high to take her off, I put her toys in the bed with us and she was really having fun. Jennifer the play lady came and played with her also and she actually laughed some. The laughing made her whole body shake like St. Nick's bowlful of jelly.

The big treat for the day was that we got to go outside the room and walk around. Since all of Kate's cultures have come back negative for the second time (meaning no infections anywhere) they said if she took a bath and wore gloves and a gown she could come out. So she took a long and deep bath which she enjoyed (there's blessings in not washing hair) and then we did all the creaming up and dressing changes, which she doesn't enjoy. The nurse cut down a gown for her to wear and she went out in her lovely gown, adult gloves, hat, and mask. She walked down to the scales and weighed herself, then back to the basketball goal. By then she was hurting too bad and was too pooped so we came back to the room and she's still snoozing. Hopefully the exercise will help her move the gas out.

I did get her to take one sip of milk today (in exchange she got to push the nurse call button) and put one fruit loop in her mouth, although she couldn't chew it. Last night when I brought in some pizza and fries for her (spicy foods are often what they want to eat first) she took a whiff and threw up. She has been throwing up on and off for several days now. When she throws up it's mostly clear mucous or mello-yello colored mucous, all part of her digestive tract healing itself. Her mouth is also much better, although it threatened to bleed today so they are giving her more platelets.

So keep praying that she can get up and move around and also eat so that her stomach will get back to normal.

Dr. Sande has been reducing her pain medicine and that's part of why she felt more like playing today. They are going to start her on methadone to help with the withdrawal symptoms. She get the shakes when she gets really tired. My little junky!

My friend Beppie came back today on her way back to Atlanta and brought more food and gifts (plus dishwash detergent and clothes detergent!) and also my minister Larry Stephens popped in. Kate got scared and wouldn't look at him until he took off his mask to throw it away on the way out and then she recognized him.

Gotta run, it's clean all the toys day today and I need to get started before she wakes up. Oh, Wen went home sock again yesterday afternoon so pray that he's well too. Oh and there was a new patient yesterday and another new one today, so keep us all in your prayers up here. I need to eat up all the food I've got in the freezer to make some room for everyone else, now.

Blessings, Lesley

p.s. I put a new picture of Kate on the picture page.

Wednesday, August 20, 2003 3:47 PM CDT

Hi everyone, things are definately getting exciting around here. Dr. Sande came in yesterday afternoon and said "Guess what her white count is?" I said "Above 500?" The answer: 690! So yesterday counts as day one of the "three days above 500 to be declared engrafted". Today's count is 750 (0.75) so she is doing great on the white cell department.

After I sent the update yesterday I turned around and Kate had picked the scab off her mouth and it bled again. Finally late last night the scab came out and it hasn't bled since then. I have even been able to do her mouth care twice today, which she needed as she now has a little bit of thrush on her palate. Her lips are chapped and her gums still swollen but otherwise her mouth is pink and pretty.

Her stomach is still just as bloated. Correction to yesterday's info: the CT scan showed some fluids leaking from the bowels but the bloating is from gas in her small intestine, which will move slowly. They did X-rays of her kidney/bladder area today to be sure there wasn't some sort of obstruction but since she has gas and diarrhea then this should just be an issue that time will correct. Pray that she gets hungry and we find what she'll eat as that will help this resolve itself also. They are reducing her pain medication in an effort to get her bowels moving too. Her stomach really hurts when I pick her up, move her, or change her diaper so I think if we could get that fixed she'd really feel pretty good. They are giving her mylecon (remember those baby gas drops?) by mouth not maalox by IV, my mistake from yesterday also.

She has not run a fever today either and all the cultures they have run so far are negative.

Kate got up and played a little today until they made us get back on the monitors and now she's sleeping. My college roommate Beppie came today with gourmet homemade salads that she trucked down from Atlanta, plus Diet Coke. I said I was giving it up but I need the caffeine.

Last night was a better night. The nurse said "Oh, it won't be bad tonight, it's only meds at 10, 12, 2, 4, and 6." Great!!! Except those meds run for 20 minutes or one hour, and so it's more like 10, 10:30, 11, 12, 12:30, 1, 2, 2:15, 3, 3:30, 4, 5, 5:45, and 6.

But all's well that will end well. Blessings, Lesley

Tuesday, August 19, 2003 1:32 PM CDT

Hi everyone. Things are looking up although I can't say that Kate is really feeling much better.

Kate has run a fever of 99.9 or less on and off since Sunday afternoon, although she doesn't have one at the moment. They have cultured everything there is to culture but I haven't heard back any results yet. The results from the CT scan were good - she is "third spacing" fluids and so has fluid in her abdomen and a little in her lungs but nothing too bad, and very little blood leaking.

She has drunk almost a whole can of "diet" (meaning regular Coke, I'm pushing a strawberry milkshake but no takers yet) since last night which is a big change. The doctor has increased her lasix dosage and frequency to try to get her output closer to her intake and so she's thirsty. After the first gulps last night she threw up and out came the giant blobby mass of nasty blood just inside her lip, but after it came out it didn't bleed anymore! So she has some crusty blood on the outside of her mouth but that's all. I haven't seen inside her mouth yet today but the doctor says it looks much better. Her gums have been swollen up so much they almost cover her molars, so I hope that's better. I may try to do mouth care later.

She's got gas pretty good, and continues to have diarrhea, but that's good as it's getting her bowels back to life. They have started her on maalox (IV!) to help with that.

Her stomach is really swollen and hard and it hurts her. She won't sit up and play and cries when you move her legs around to change her diaper. It's also hard for her to get a good breath.

Her white counts are moving up - it was 0.29 yesterday and 0.39 today, so we are very excited. It shouldn't be too much longer before she starts feeling a bit better. Hopefully this will allow us to get a bit more sleep. I'm not sure that I slept at all last night and Kate woke up every time the nurse came in (which was at least every hour) and wanted a drink but only if I held the cup.

Wen threw up at school today so Darryl has had to go get him. Amtec, please don't fire my husband for never showing up at work! Hopefully it will be a one-time thing and Wen won't have any sort of virus. I want to go home this weekend!

Blessings, Lesley

Monday, August 18, 2003 11:00 AM CDT

Hi Everyone,

Sorry for not updating yesterday. I got to the hospital Sunday afternoon and Kate was asleep and Darryl was leaving to go to Anniston to pick up Wen and then go on home (Wen stayed at Darryl's sister's for the weekend). I thought I'd be able to write this short update that said "All's well, no new news" but of course that's when it all fell apart!

I'm not really sure what the entire order of events is now, it's blurry, but Kate's mouth started bleeding really bad (I think it's coming from her upper right lip just at her canine, and it's not just thin blood running out, but nasty clumpy blood that turns my stomach and dries her mouth closed and otherwise grosses me out), her temperature went up to 99.9, her abdomen, which was already distended, seemed really big, she felt bad, acted like she was in pain, her heartrate went up and so did her blood pressure. They don't consider 99 a fever, but since she normally runs 97 instead of 98.6 it is for her. Actually Kate runs 95 under her right arm and 97 under her left.

They drew blood and got urine to do cultures/tests for infection, and decided to give her another unit of platelets (they had given her red and platelets in the a.m. and also took her off morphine and on something else because of the itching). They did a blood test too, and the results came out that her platelets were lower than that morning and her red was only one point higher. That pretty muched freaked me out and got everyone hopping.

It could have been that she had some internal bleeding, possibly into her abdomen. But that would be really unlikely. Any bleeding they would expect would be in her GI tract and she would vomit or poop it. It could have been some sort of anemia where her B-cells (she still has those) attack/eat the donor red cells because she might have built up a resistance to them. So they ordered all sorts of tests about that and also a CT scan of her abdomen.

So I managed to get 30ml of contrast apple juice into her, which I thought was a lot for a kid that hasn't had anything in days, but turns out that was only 1 oz. Then she threw up really good and made one huge nasty green slick diaper. Worse than those first newborn ones. And she felt some better.

The resident called Dr. Sande in around 10:30 (Darryl drove back down, got here about 12 or so) to go over it all with us. By this time they had drawn another CBC which came out completely fine. Dr. Sande decided that there had been some problem with the first sample that showed no improvement in numbers. Then all the tests for the "attack" anemia came out negative. Her stool tested positive for blood, but you can tell by looking and smelling it that it wasn't a lot of blood. So Dr. Sande decided that she was OK but since we'd already ordered the CT and drank the juice and she is distended that we would do the CT.

So we had a CT at about 1am this morning, which went quite well actually. We haven't got the final results back but the preliminary shows that she just has fluid leaking from her bowel into her abdomen. They said her fluid is "third spacing" meaning that it's pooling in areas that are "empty" instead of staying in the bloodstream. This is because she doesn't have the blood cells to hold it in. They are giving her lasix which she has responded too, which means her kidneys work fine. But lasix only works for fluid in the veins, so they have given her albumen to help with the rest. Only time and white blood cells will really fix it.

So, it was a bit of a scare but what it boils down to is that she is beginning to engraft. The beginning of this whole transplant process is about shutting down her system. When it starts back up, it can be a bit violent on her body. Not only has her marrow been shut down, but her whole GI tract, and so that's having some upheavals starting back. Her white count was 0.24 yesterday, and in all the CBCs last night and this morning it's around 0.1 so that's very promising. Also Dr. Sande said that when she looked at her blood smear she could see some nuetrophils (the white cells) and that they looked like boy cells. Apparantly the girl cells have a chromosone that gets shut off and so it appears as a black dot and you can tell the difference visually. Amazing. Also many people run a low fever when they engraft.

So Kate still feels really bad. Her mouth isn't bleeding at the moment, but there's a big blob of black dried blood hanging out of it. Yesterday the bleeding stopped and Kate reached up and pulled the scabby thing off and started it again. So I imagine that will happen today also. She has already thrown up again today, probably because of the blood. They are giving her another drug to help with the bleeding, and her bp is down to normal range. Her fever is down a bit. Since she has had diarrhea she is in contact isolation, meaning we have to wear gowns and gloves around her, which we remove when we leave the room, to protect the other patients from any bacteria she might have.

I told Dr. Sande this must be the storm before the calm, and hopefully this will be our worst day and things will all be uphill from here. We didn't get to bed until about 3:30 this morning, so hopefully Kate and I will sleep some today and hopefully Darryl will not sleep any on the way home!

Almost 7000 hits on the website - I continue to be amazed and to ask you to continue to pray for us. Kate bald head looks really pretty and her face is very pretty without the distraction of the hair. Her eyes look bigger. What's left of her hair seems to be holding on - so that she's got a good bit of fuzz on the top, but it's patchy so it would have looked awful if we hadn't shaved it.

Saturday, August 16, 2003 1:21 PM CDT

Hi everyone, hope you are enjoying your Saturday. Wish we could be at the August Birthdays picnic today in Florence but we'll have another one next year!

We had a just fine evening and night and morning so far. Kate's pain is under better control, so she has felt like playing some, walking her dog, blowing bubbles, and watching the nurses and docs play basketball. Dr. Sande has a vicious dunk. She plays for a short while, but is very short tempered and gets frustrated easily, and slaps and swings her arms around (Kate, not Dr. Sande). She get tired quickly so she'll get back into bed and watch Barney until she goes to sleep. Her skin still itches from the morphine but between some sort of IV itch medicine and hydrocortosone cream from head to toe, and total body PJs, she is doing OK. Her white count is down further but that's just the way it is.

Her blood pressure continues to be the main issue. It's not at any sort of dangerous levels, but they have to watch it as if it gets too high, the combo of high BP and cyclosporine can cause seizures. The cyclosporine and pain make her blood pressure high, but then the hypertension medicine and reducing her pain make it go down. Then there's the fluids issue. She retains fluids because there's a "vacuum" in her marrow/circulatory system from no marrow production and so the fluids go to fill those empty spaces. That can make her pressure higher. Then they give her lasix to reduce it, that makes her pressure lower. So it's a balancing act.

Her mouth looks pretty good to me. It did bleed some in the night as there's a little blood on her pillow and sleeve (she rubs her nose with her sleeve b/c it itches and that busts open her lip again). They gave her more platelets early this morning and so far she hasn't bled any more. We are vigilant with the mouth care and so get regular peeks at her mouth. She is not as hoarse today as yesterday, and doesn't snore as much, so I think her throat must feel better too. If she would stop growling at people who do horrible things to her (like look at her in the hall or say "Hi Kate") it would help.

I give out all this info because a lot of you are interested in all the details (especially those few of you who have this in your own future!) but I don't in any way want anyone to think that Kate is in any sort of bad way. Actually she's just perfect for the situation she's in, and really much better off that most kids in this.

Darryl and Wen and Jen and Tripp really had a great time at the ball game last night. They were sitting right on the right field wall, so if you saw the two catches that Sheffield made back there during the game you might have seen them on TV. I saw them in the first inning but didn't get to see any more as I was enjoying Barney. Darryl's here now so Kate won't have anything else to do with me.

Kate's hair has fallen out more. She's pretty much bald around the sides with some short hair on top. Sort of a reverse of her Uncle Mike's hair do. We are charging up the clippers to buzz the rest off as we are all tired of hair being everywhere. Dr. Sande says sometimes their eyebrows and eyelashes fall out too. And when their eyebrows grow back in they come in black and thick and uni-brow (because of the cyclosporin, but when you are off it they go back to normal). No problem, she'll look even more like Darryl then!

I'm off to get an uninterupted night of sleep. Actually last night was pretty good - we had Barbie the Stealth Nurse. I don't know how she does it, but she's in and out of here without a single sound - take vitals, takes blood, hangs platelets, changes diapers, everything in total silence.

Blessings, Lesley

Friday, August 15, 2003 1:45 PM CDT

Happy Friday everyone in the "real world". Kate's count is back down to 0.07, as Dr. Sande said it would. Later yesterday afternoon her mouth started bleeding pretty bad, and that's a fairly good sign that her mouth isn't improved so her white count isn't coming up quite yet. It will be up and down some but in order to declare engraftment it has to be above 0.5 for 3 straight days.

Kate got platelets last night and more today. They have also increased her morphine dosage in the constant drip and given her some medicine that will help with the itching. The morphine makes her itch all over, which is bad not only b/c it bothers her, but also because she has scratched herself until blood comes in a couple of places. I have her covered neck to toes in a sleeper but still her neck and nose itch. Scratching her nose makes her rub her mouth which makes it bleed, so it's a vicious cycle. Her throat is also hurting her and she's very very hoarse. There are probably sores in her throat as well.

Her hair is still falling out but less so today. She has patches of bald but still a fair amount of hair - she looks like a nuclear bomb victim. Kathy took a digital pic of her and I'll be putting that up in the photo album as soon as I get it.

Kate has slept a good bit, but suddenly rallied a bit ago and walked around, made her people slide down the roof of the playhouse, made the people slide on her slide, raced her cars, and played with her new books and necklace (my college roommate Sally McMillan Purnell came today with food and gifts!). Then just as quickly she got fussy and tired again. I put her in bed with a Barney tape (ah!!) and while I was picking up she saw the bedside tray and said "Eat!!" So I fixed her mac and cheese but she wouldn't eat it, but won't allow me to move the tray. She has also spent some time hanging out at the nurse's station today and blowing bubbles with Jennifer TPL (the play lady).

She slept well last night but because of her throat her respiration was a bit slow and we had to mess around with her sleeping position to get it right.

The boys are off to Anniston to pick up Darryl's sister and brother in law and they are going to the Braves game tonight, then Darryl will be back here on Saturday. Wen said he had a good day at school yesterday and did good on his vocabulary test today, so I think the initial shock of 2nd grade has worn off.

I am very proud of myself as I have done my exercise tapes 5 days in a row (but if you could only see the junk food I'm eating!!) and completed several scrapbook pages. I'm now only about 7 months and 2 Disney trips behind! The more I type the less scrapbooking I do. Thanks to everyone for the prayers and huge stacks of cards we get each day. Blessings, Lesley

Thursday, August 14, 2003 2:04 PM CDT

Here's the big news - Kate's white count is 0.31. Yesterday it was 0.03 and the day before that 0.05. Dr. Sande said it's like popping the clutch. We'll probably see it go down, but before we come to any conclusions we'll have to give it a few more days. So I'm excited, but like everything else we've been through, we don't expect the best but try to prepare for the worst and are usually pleasantly surprised.

Just after I finished typing up the update yesterday I looked over at Kate and she was taking her baby doll's temperature - rectally. She has played a little, but she has a short fuse and sleeps a lot. She likes to go outside the room but just wants to sit and watch everyone else instead of walking (although yesterday she did walk her little dog some).

When her dinner got here yesterday she said she wanted to eat, but when I took the cover off she got one whiff and threw up. She hasn't eaten anything since but has drank a good bit of 7-Up today.

Her mouth doesn't look any worse, and hasn't bled at all today until just now when I did her mouth care. Her gums were really swollen up yesterday but they look better today. Her bottom is also looking better, it had gotten red with the first bout of diarrhea and now the creases at her legs are peeling but the rest is looking better.

Kate's hair is all over the place, covering me, her, both beds, all the pillows, the toys, etc. So this morning I got out my scrapbooking scissors and gave her as close a haircut as I could. I left some little curls at her temples but mostly it looks like Wen's hair now. Dr. Sande said don't give up my day job but too late for that now. It's still falling out like mad but at least it doesn't float all over the place or make hairballs on the floor.

Kate's blood pressure is still being watched closely. Lately it's been almost too low.

Dad and Linda were at my house yesterday cleaning and washing. As many of you know, the steps are carpeted but the last step is finished oak, matching the foyer floor. Everyone who ever goes down the steps, even if you warn them, thinks the last step is the floor and busts. Dad busted and had to go to the ER. Fortunately it's just a bad sprain (doesn't seem to have stopped him from going to the barber shop and Gibson's this a.m.) and fortunately they had finished all the cleaning!

So if any of you go to my house while we are gone, please be warned about that step and please don't sue us. My plan is to rip all the steps up and redo them and repaint the floor but I'm busy with other stuff at the moment.

Wen says second grade is really hard, and that they don't get any play time, but he is excited that he can take home any library book he wants whenever he wants.

Blessings to everyone, your prayers are working, Lesley

Wednesday, August 13, 2003 3:35 PM CDT

Well we've been here 16 days now - but it's really passed quickly. I think when you come to the hospital prepared for a long stay, instead of being surprised at being there and wondering if the doc's going to let you go home today, then maybe it's not so bad.

Kate had a pretty good afternoon yesterday. She played and walked and managed not to throw up until I gave her the blood pressure medicine. I've got to get better at that.

We had a less than restful night as Kate's monitors (heartrate, respiration, oxygen) went crazy and by the time we figured out it was just that the sticky things on her chest weren't very sticky she was wide awake. Here's a hint: never watch Barney at 1am and then go to sleep. Nightmares ensue. Kate sprawled out in my bed and I think she slept really well.

When she woke up this morning she said she was hungry, but as I got her breakfast all arranged she just suddenly threw up (and I didn't give her any meds!). The vomit tested positive for blood but they think that was just from her mouth; her upper lip is still bleeding on and off. And they think the blood is what made her nauseous (nausiated?). After that she was pitiful for a while and then just went back to sleep. Dr. Sande has increased her morphine dosage, and they are going to keep her platelet level up higher from now on. They try to keep it as low as possible to limit her exposure to bad stuff. When she woke up she sat in front of her lunch for a while but wouldn't eat. She did play on her mat a bit then the play lady came. They blew bubbles a while but now she's tired again and watching what else? Fortunately Jennifer the play lady got me about 6 new Barney videos, not that that really makes a difference. Kate is really irritable and slaps at you and slings herself around and hits things when she's frustrated or doesn't want you to mess with her.

She has started taking a drug today that stimulates production of nuetrophils (a white blood cell). They don't give it sooner because it might stimulate Kate's marrow instead of Wen's, but at this stage it should help with engraftment and then with getting her white counts up to less-than-critically-dangerously-low. Dr. Sande said they continue to give it for a while after the counts get up, and that it will make the marrow so full of cells that her bones will actually hurt.

I do miss her feeding tube as now she has several medicines she has to take orally. She absolutely won't cooperate about them. Sometimes she'll take Tylenol ok, sometimes from Keisha ok, but never from me. We have been bribing her with gum and candy and when she says she wants to go outside I say "OK, but we have to take the medicine first." Today Keisha gave her a piece of gum no strings attached and she looked at me and said "No me'cine" and then when Kate wanted to go outside I got her already (masked up and lines lifted) and she turned around and pointed at me (with a rubber chemo glove on her hand) and said "No me'cine!" so I think the bribery must end. Add this situation to your ever-lengthening prayer list.

I asked Dr. Sande what would be the signs of engraftment. She said her white count would get to 0.100, and probably bounce up and down a couple of times and then take off upwards. The only way they can be sure is to do something called a FISH test on the white cells. Since Wen is male (oh so) then Kate's blood cells will have an X and a Y chromosone on them. So if Wen's marrow is engrafting, these cells will have XY, if it's just Kate's they'll be XX. What this means, as I told the Yahoo DBA group, is that if Kate ever takes up a career as a violent offender, as long as she only leaves blood evidence (no saliva!) then the cops will think it's a guy.

Joritt, the 6 year old boy in the Netherlands, engrafted yesterday! They have his infection under control (and the docs told them they had not been giving him any prophylactic antibiotics this whole time and don't know how they missed that - makes our radiology fiasco seem not so bad) and he's doing well. The 15 year old in Portland, Arash, had a lung biopsy and it is graft vs. host in his lungs - and they were right at day 100, almost got away clean. He'll have to take Prednisone for a while but will be OK also.

Kate's hair started coming out today. When I brush it the brush is full of hair, and there's hair on her pillow. I expect by tomorrow evening she'll be bald.

When the mail comes she said "Mail!" and likes to open every one, pretend to read it, shove it back at me, and rip open the next one. Let me just say that if you ever get sick and cards make you feel better, get on West Huntsville Church of Christ's mailing list. I get at least 5 a day from people that go there, and most of them are custom made on a computer, so not only are they some pretty nice folks there, but artistic and technologically advanced.

Kate's just watched a Barney Christmas video and is playing with the thermometer but I need to get her to sleep, so thanks everyone for the prayers and emails and guest book notes - over 5000 hits so far, it's really inspiring.

Tuesday, August 12, 2003 3:49 PM CDT

Happy Day 6. Only time for a quick update as I opted for a nap instead of updating and now Kate's awake too.

Kate's white count has tanked at 0.05 (normal is 4.00 or so). Her mouth has got a couple more sores but inside her upper lip is still bleeding. They gave her some platelets last night but that spot is still yuk.

They have also started her on a morphene pump but she hasn't been awake long enough to see if it makes a difference. She's been really irritable today but still played, colored, and ate a bowl of cereal.

Wen started 2nd grade yesterday and I bet he had fun but he's upset that it's "hard" and he has homework every night. He has his first guitar lesson today so maybe it will be a better day.

Got another stack of cards in the mail and haven't even had time to go through them all yet, thanks everyone.

Monday, August 11, 2003 3:07 PM CDT

Happy Monday,

It's been another uneventful day here at the SCTU. Kate has felt really good and spent most of her time last night and this morning outside the room. I think we did at least 25 laps around the nurses station and watched Keisha throw a lot of baskets. When Jennifer the play lady came today they blew bubbles for about an hour.

Kate feels fine, but her blood pressure continues to be high, about 120/70 give or take a bit, which is good for me but they'd like hers to be 90/60 (or is it over 40?). Anyway, she has thrown up some yesterday and today, mainly when I make her take her blood pressure medicine. She also has a couple of sores in her mouth now, and one spot that's bleeing pretty good when it's rubbed. Her lips are looking reddish and cracked. But that didn't stop her from eating half a bag of Sun Chips for lunch. Her hair seems to be still firmly rooted in her head and the tape holding down the remnant of the feeding tube is also holding fast. Dr. Sande thought that she might have some mucositis affecting her gut, and ordered some morphine which maybe helped her if she was in pain but didn't seem to slow her down at all! When I took morphine it was like an instant clonk on the head. It just revved Kate up.

There's another patient here now, Ketavious, who is 8 months old but I don't know anything else about his condition other than he seems to be in pretty bad shape already. I have only seen his mom once and didn't get a chance to speak to her. She's staying close to him and there's a protective isolation order for him, so I may not see them for a while. There's also supposed to be another patient checking in this week.

They had the first meeting today of a support group for caregivers of stem cell patients, but as the outpatients had all left and Ketavious' mom was taking a nap I was the only one there! But they had Roly Poly sandwiches and I like Michelle the social worker so I enjoyed myself anyway. Angela Shock brought me dinner and more homemade bread last night. Good thing I brought stretchy clothes.

I have actually worked on my scrapbooking some the last couple of days and did an exercise tape today (first time since Tuesday) so it's more like a "normal" day. The time here so far has been out of what I thought would be ordinary since Darryl and Wen have been here so much. But I think this week we will settle in for the long haul.

When we get back home it will be very different too, maybe for about 6 months. She will still be immunosuppressed, and can't go to crowded places or church, has to wear a mask in public places, can't go to any restaurant with below a 90 rating (unfortunately I think Gibson's has an 88 but guys - there's time to pull that up!), and can't drink anything from a fountain type machine (no more trips to Target for slushies or popcorn), or eat anything that wasn't just made fresh for her, or eat raw/crunchy fruits or veggies, or eat anything made with non-distilled water (unless it's boiled a long while or baked). Wen probably won't get to have friends over and I suppose we'll be homebodies for a while. But after this year is over we'll finally have "normal" lives. It will be worth it.

Keep thinking of us! Thanks to everyone who has signed the guestbook. I have tried to thank you personally but I've gotten confused on who I've mailed and who I haven't so forgive me for that!

Sunday, August 10, 2003 2:05 PM CDT

Hi everyone,

We've had a really good day so far today. Kate has been up since about 6:30 and has eaten a good bit of cereal, gotten dressed (mom cannot also claim this victory, however), spent time playing on her playmat with her toys, cleaned her own slide, taken 3 trips "outside" including a race with mom,dad, and brother, and also had a little mac'n cheese before throwing up. Now she's taking a nap.

I admit to be at a bit of a loss for any other news. No news is good news I suppose. She does have one small sore in her cheek, but otherwise her mouth/lips/tongue look really good. Still has hair. We did finally force her to let us trim off the two ends of the feeding tube, but she still has about a 3" section of it taped down to her face and a piece of tape on her back that she won't let us remove. We'll just wait for it to come off.

I stayed with Kate last night and the boys have now gone on home so that Wen can get ready for his first day of second grade tomorrow. Our nurse did an excellent job of coming in before any IV alarms went off, but as I was up finishing the latest Harry Potter book I didn't go to sleep until after 12 and the nurse had to be in doing stuff to Kate at 2, 4, and 6 all that nice sleep I got the last few nights is over!

Remember us in your prayers and also Jorrit, a 6 year old boy in the Netherlands who is about 8 days ahead of us and also doing very well although he has an infection at the moment, and also Arash, a 16 year old in Portland who has completed his transplant but is now in the ICU and they think it's GVH (graft vs. host) but don't know where in him it is yet.

Saturday, August 9, 2003 11:02 AM CDT

Morning everyone.

Well, believe it or not, Kate pulled her feeding tube out last night!

Darryl said she was sleeping curled up on her stomach in bed with him and when she rolled over there was the feeding tube laying there. He says he freaked but the nurses said no big deal, and the doctor says we won't bother putting in another one. She can get IV nutrition, and since she is getting such excellently potent and well matched marrow, she's not expected to have the most horrible time of it, and probably won't need supplemental nutrition long enough to harm her liver. So all that trauma yesterday for one night of nutrition! But hopefully they will fix all the problems and the next kid who has to go through this won't have any problems.

It's so like her. Darryl was telling me this on the phone this a.m. and Kate said "I did it". But now she won't let anyone pull the tape off her face so the feeding tube is still hanging off her and she plays with it.

So I don't suppose we will shave her hair off after all. Although when I told Wen that we were going to do it he got excited and asked me if I was going to do his too. Kate did throw up this morning, but with the feeding tube going in and out I expect that little valve at the top of her stomach is a bit weak. She had a problem with that when she was littler but took something (Zantac?) for a while that fixed all that.

We were talking with Dr. Sande yesterday about the chemo that Kate is still receiving - on day 1, 3, and 6, and why it won't stop Wen's marrow. This chemo kills T-cells, and so helps prevent Kate's from attacking Wen's marrow and Wen's T-cells from attacking Kate's body. Since Wen's marrow won't begin producing T-cells in Kate's body for a while, it can't effect any new ones. The point of all this was that she was explaining that new T-cells go to the thymus for "T-cell education" (but the name was must longer and funnier) on what NOT to attack. You have this school going on in your body for a while when you are a baby, then as you grow your thymus "goes away". But then with a transplant it grows back. We are just amazed at the stuff the medical folks know, but Dr. Sande says it's more interesting what they don't know. She said transplants are barbaric, and they are hoping for new treatments soon. There is much research on gene therapy, but two children in France who had it have developed luekemia, so all the brakes are on that.

Darryl has been staying with Kate since Wednesday night, so I've actually had 4 nights of complete sleep at Johnny and Faye's. I told Wen he was like an orphan child being raised by family. But he doesn't even care, he's having so much fun with Bailey (our nephew). I got a chance to go to Pepper Place Market this morning. I keep reading about it in Southern Living and wanted to go. It's like a mini-farmers market for stylish people. But they also had musicians and some crafts and a chef doing a cooking demonstration, so it was a nice break. I got an iron sculpture for my garden, which I suppose will sit in the back of my car for another couple of weeks.

Almost 4000 visits to the website - I count each one as a prayer for us, so thanks so much!

Friday, August 8, 2003 4:06 PM CDT

Afternoon. We have had a mightily traumatic day. Kate is doing fine, have no fear.

Yesterday Dr. Sande decided that it was time for Kate to have the feeding tube put in. Everyone on the unit gets supplemental nutrition eventually. A feeding tube is best because the food goes into the intestines and therefore part of the digestive tract, and the liver, are still "exercised". They stick the tube through the nose and down into the instestine, and they do it with a fluoroscope.

So at 10 this morning when we were scheduled, I took Kate down to Radiology. As it turns out, the radiology group had started doing a VCUG (the sort of X-ray Wen used to have when he had his bladder/kidney problems - where they catheterize the kid and xray the fluids going in and out) and after they catheterized the kid they realized someone didn't load the film. So they had just moved them into the room Kate was supposed to be in. So they asked us to wait. In the hall. With 50 pharmacy students walking by. Kate's white count is 0.11. Normal is 4.0. Finally the radiologist showed up and asked about when Kate ate. She had been eating a cracker just before we left. No one had told us that she couldn't eat, and the nurses here in the unit say that sometimes radiology gives NPO orders (no eating) and sometimes not, so they thought not for Kate. So back up to the room we go with instructions to come back at 2. I told the radiologist that when we come back at 2 I expected to be taken immediately in a room.

So of course this would be the day that Kate wants to eat, asks to eat, suspects that I might be eating and wants to look in my mouth.

They won't give her any more Verset (sp - sleepy drug) or unhook her IV until they've confirmed with Radiology that they are ready for her. So at 2pm down we go again. And they ask me to wait in the hall again - I refuse and ask for a room. Which I wait in. And wait in. Finally someone asks me what I'm there for, has me stand in the hall while they look through her chart, and takes me through more halls, past the public waiting area, into a room. Several people come in and out scurrying to get equipment out and discussing who is supposed to be my doctor and who's available to do it. Finally the doctor shows up, and just before they start I have to ask them all to wash their hands. They are wearing gloves, but still! Then of course the whole thing goes badly - Kate threw up, she's kicking and crying (so would I if you stuck something in my nose and down my throat), and the doctor can't get the tube to go far enough into her intestine. So he had to go get another doctor who does manage to get it in. And this whole time this tube, which is going in Kate's body, is flopping around on a table that is not covered, and some child with menengitis or pneumonia could have just been on it. I saw the doctor pick up a syringe off the floor (I watched to be sure he didn't use it, I don't think he did). The nurse used a betadyne swab to clean Kate's face before putting on the tape to hold the tube. The tube is plastic with a glass vial inside - you break the vial and it soaks a swab at the end of the plastic. She broke the vial by pressing the swab end against the table. Ah!!!

I considered jerking Kate up off the table and high-tailing it back upstairs, but I decided that I would be exposing her to more germs by doing that as I'd have to come back anyway.

So of course I returned up here in hysterics and they've had radiology reps and hospital reps and everyone else up here. The head of radiology is off today but we are told to expect to see him too.

I told the hospital rep guy they oughtta be glad I made all those interviews YESTERDAY.

Ok, I'm calmer. It seems that Darryl and I are jinxed when it comes to radiology as we switched to Children's for Wen because Huntsville Hospital's radiology department must be the training course for hell.

Other than that, how was the play Mrs. Lincoln?

Kate is actually doing terrific. Dr. Sande says "beautiful". Still no sores in her mouth, but we think they will start soon. Last night she had chicken noodle soup for dinner. Last time she had it she ate two full bowls of it, but last night she put a bite in her mouth and spit it out, which she only does when she doesn't like something. Food tasting bad is the first sign of mouth sores, then a mucousy saliva. But, the first sign of white cell production is that the mouth sores get better.

Kate has been playing today and asking to eat as I said. Her blood pressure has been too high and they've been concerned about it (not overly so though, stay calm grandparents). They have her on some drugs and it's been down the last few times they took it. She's started on an anti-fungal today too. She has spent a good bit of time out in the nurses' area, watching Keisha play basketball and directed her to "miss it" "make it" or "dunk". She also likes to "go fast" and run around the halls, which she did even though she'd had a dose of Verset. Darry and I had to hold each hand to keep her upright but she still wanted to run.

The other patient went "home" (actually to the Residence Inn) today, so we are here all alone. They do expect to admit two patients next week, and I have deduced by the crib outside that at least one of them is another baby.

Wen is doing great and walks almost normally. Mike and Melody are taking him and Bailey to a movie this afternoon. Keisha produced 4 tickets to Friday's Braves game so Darryl and I are in talks to see who goes and who stays with Kate. I think I may be here!

Kate had another platelet transfusion today (platelets are really short-lived). Her red count is still pretty good. Darryl and I are thinking we will just give her a buzz cut when she wakes up. I hate to do it, but I think if we have to continue to wash her hair, therefore running water all down her face, the trauma of having to change the tape and tagaderm patches holding down the feeding tube will be too much for us all. I'll get a digital picture of her after we do it!

Keep us in your prayers and pray for Kate's mouth sores to not happen or at least not be bad, for her blood pressure to respond to the drugs, for her not to catch any bugs from anywhere!

Thursday, August 7, 2003 4:52 PM CDT

Hi everyone! Kate continues to feel good mostly. She slept all last night, played this morning, then slept more today (on daddy's stomach) after she had to take some blood pressure medicine under her tongue (not happy). Now she's rolling her bowling pins down her slide, but dinner just arrived and she's considering it as it's soup, her favorite.

Her blood pressure is up due to the high dosage of cyclosporine (anti-rejection drug) she's on. She will start a scheduled hypertension drug tonight so they've got her one some "shots" of something until then.

Elsewise she's doing well. Still has her hair, still no sores in her mouth but she does have diarrhea pretty bad. It's nice that she feels good now but we don't delude ourselves that it won't get bad, and probably soon.

Wen is feeling good enough to play Gamecube non-stop. By the time I left the hospital with him today he was walking pretty well, but kind of ducky. The NP removed the pressure bandages from him punctures, that was pretty traumatic as they are sticky, but now he only has bandaids. I mentioned that he was a marrow stud. Normally they expect to see 3 to 4 million stem cells per kilo of marrow. Dr. Sande told me yesterday as I was leaving that Wen had FORTY million per kilo! He got tons of presents yesterday, I can't even remember what all, things got a little wild.

The channel 48 and the Children's Miracle Network people both asked me what I expected to happen from here on out. I told them I didn't see any reason why we would have two children who were such perfect marrow matches and had so many stem cells except to have a miraculously successful transplant!

Thanks to everyone for all their love and care! Lesley

Wednesday, August 6, 2003 11:43 AM CDT

News Flash - WAFF 48 is on their way here to interview me (Darryl and Wen opted out). I don't know when it will run but just watch if you'd like.

The kids are both sleeping on my bed and Wen's marrow is pumping into Kate. It started at 11:30 and will take about two hours.

Wen's part went really well. He was afraid this morning but Jennifer the child life specialist (aka play lady) stayed with him the whole time, to the OR and in recovery and that helped. He came up to the unit in a wheel chair looking pitiful (sp?). But he said it was all worth it after he opened his Nintendo Gamecube with Gameboy Advance player and several games and even remote controllers. Now he's asleep. Darryl also wrote the Braves and they sent autographed pictures of Jave Lopez and Greg Maddux, and Auburn U. sent an autographed football yesterday and also a box full of baseball stuff.

Apparantly Wen is a marrow stud. Dr. Sande took 150cc of marrow, which is what she planned, but once they tested it it has twice the number of stems cells they figured on. So Dr. Sande says this is good for Kate, she may engraft (that means Wen's stem cells start producing white blood cells in Kate's marrow) earlier, but also there are more T-cells in that marrow and she may have more problems with graft vs. host. Also she left Wen's red blood cells in the marrow since he's a universal donor, and Kate will get a mini-transfusion as well as a transplant. Very efficient.

We had a good night last night. Darryl and Wen came up and after they left Kate went right to sleep. She never woke up fully again until I made her get up at 7am. Since I also feel asleep at 7:30 she didn't get a bath or a dressing change on her central line, so we had to do all that this morning. She has a bit of a runny nose.and her left eye is red and tearing. They swabbed her eye (that was so fun!) to be sure it's not an infection but I think it's just one of those things. Elsewise she feels really good. Her platelet and white counts have almost hit bottom, she had to start wearing a mask today to go outside our room.

Since I got to sleep so early I woke up about 11:30 and stayed up until around 3. I ate, read, had a nice quiet time. Wouldn't you know THIS night the room was quiet and the nurses weren't in much. Kate's night nurse mentioned that Kate hasn't had to have too much going on at night yet, but that she would soon. Great! :( This would be due to mucositis (mouth/digestive tract sores) and other of the nastier side effects. I got up about 5:30, got dressed (makeup too) and went to see Wen before coming back up to wake up Kate.

Children's Miracle Network has been tagging along filming us for a short piece for the telethon, and also for an informational film about the SCTU. They got Wen smiling on his way to the OR and both kids together here as well as the boy bringing the cooler of marrow (I took several pictures of him too, he was highly embarrased). Jennifer the play lady took some digital pictures for me to post on the website so be sure to check the photo album.

So as of today Kate no longer has DBA!!!! Praise be and thank you God for our beautiful brave children. Now we wait 7-21 days for engraftment, and then for Kate's white count to rise enough for us to go outpatient. Please pray for those things and for no graft vs. host (this is Wen's T-cells attacking Kate's body).

Thanks for the LOAD of cards we got today and the messages on the website.

Tuesday, August 5, 2003 3:21 PM CDT

Hi all,

Not too much new to report today. Yet another night full of nurses coming in and out, but I snoozed this morning and didn't even get up and dressed until almost noon.

Kate is done with her chemotherapy now but has this last day of rATG. She's doing much better with it. She threw up one time yesterday evening but otherwise did fine yesterday, mostly sleeping. When I gave her a bath about 7pm she seemed to be in pain when I touched her. You know when you just feel so bad that it hurts to be touched? So they gave her the teeniest dose of morphene and she seemed fine. They can get blood draws depending on the nurse and Kate's body's position.

She has started the cyclosporin (sp?) which is an antirejection drug and she's still on all the anti-everything elses. She has diarhea, but not too bad since she hasn't eaten. A side effect of the chemo but possibly the anitbiotics too.

She only ate a bowl of cereal yesterday but drank a good bit. She ate about 1/3 of banana and about 7 bites of lima beans today and is considering a snack of Cheez-its, popcorn, and two types of sugary cereal. They did give her lasix and she's a diaper factory now. One of the side effects of one of those meds is that her fluids "leak" into her tissues instead of her blood stream and urinary tract so that helps.

Darryl and Wen are here now and Wen and Kate are snacking and watching a movie. Darryl brought me some tomatoes from my garden (I don't even want to know what sort of shape it's in or how many veggies have rotted out there so far - Darryl is reading over my shoulder and says "None" but I bet there are some major sized green beans out there). Darryl and Wen will stay at the Burnettes tonight.

Wen is due to be here at 6am to get ready for his surgery, which will be about 7:30am. It's not that bad for him - they put him to sleep, stick a large needle into his hip and start drawing out marrow. Dr. Sande will try to not poke more than one hole in his skin but will have to make several holes in his bone. She calculates how much marrow she thinks she needs and when they get close to that amount she sends some off to get a count of stem cells, then recalculates the exact amount. Then they filter it, "clean" it (since Wen has a different blood type than Kate), and bag. Then it's sent upstairs (Wen comes along when he's able) in an IV bag and Kate gets it via IV. It's really only surgery for Wen.

Children's Miracle Network has asked to film Kate's part of the transplant and WAFF 48 has called about coming to interview us (we'll see).

I asked Wen if he was nervous about the surgery tomorrow and he said "No, I'm excited!" so that's a cheerer-upper.

Blessings, Lesley

Monday, August 4, 2003 1:44 PM CDT

Hi Everyone,

Kate is sleeping peacefully at the moment. We had a really long and un-sleepful night last night. They didn't finish the rATG drip until 10:30 (they had to slow it down because she felt so bad yesterday) and so we had a lot of things to finish up with after that. We also waited to clean her central line until around that time. Her nurse and I thought that we'd try doing a blood draw without any dressing or such on the site, so that we could be sure the problem wasn't with the way the external part of the line lay. She finally got just enough blood, but then the night nurse seemed to be able to get plenty, and they are doing OK with it now. It seems to make a difference exactly how Kate's body is positioned whether they get blood or not. The end of the cather is probably lying against the wall of her vein and so when they try to suck blood out it gets "plugged". So keep praying that that problem works itself out. They can reposition it if they have to but I'd rather she not have to go through the stress of another surgery.

Kate's fever got up to about 102 last night, which is high for her since she usually runs low. They have started her on antibiotics and antivirals as a precaution, but fever is a normal side effect of the rATG. Her heart rate stayed 160-180 all night, and her blood pressure kept getting down to the bottom number around 30 (below that means they have to give her drugs to raise it). So although it took me until 11:45 to get her to sleep in her bed (knowing that they'd come back for vitals at 12) we decided that she needed to sleep sitting up to keep her pressure up. So she slept mostly sitting up in my bed. Too bad for me that Darryl went home, his specialty is simultaneous sleeping while holding a sick baby upright so he/she can breathe/vomit. Speaking of, she did vomit a little more, but only when I would give her Tylenol.

Kate slept better than me, as the nurse seemed to just camp out in our room but I think it was more like she just checked on us every hour, you know how it is when you are zombie-like (me, not the nurse).

This morning Kate has felt really good, and even ate a whole bowl of Cheerios. She is limited in her movements because of all the monitors and IV lines (she has a triple pump, a single syringe pump, and then another pump besides that!) but we (the childlife specialist aka the play lady) were able to get her down onto the playmat to play with her dollhouse. She likes to line all the people up on the roof and make them slide down/go flying in all directions. Then she wanted to slide on her slide, but settled for lining up all the dollhouse people on the top of the slide and counting "One, doo, one, doo, one, DOOOOOO!!!" and having me push them down the slide. And pick them all back up and doing it over and over. Who ever said two year olds don't have a good attention span? Unfortunately, she has also discovered Barney. I really truly thought I was done with all that.

About the time she started getting sleepy and irritable it was time for her pre-meds, Cytoxin, and rATG again. She also got some Demerol, so she's cozy in her bed, still wearing the latex gloves she wanted to wear while we were doll sliding. This day and tomorrow should go better than yesterday, but they will still be yukky. Here's what Kate is taking today: Nosyn antibiotic, Gentamycin antibiotic, Acyclovin viral preventative, Zantac to prevent ulcer, MESNA to prevent bladder bleeding from Cytoxin, Cytoxan chemo drug, rATG to kill T-cells, Nofran helps with nausea, phenergen or benedryl as needed for nausea, and tylenol as needed for fever. And demerol so she'll rest and not be uncomfortable because one of the side effects of something she's taking is muscle soreness. Everything but Tylenol is via IV. Oh, she is also not really putting out as much urine as she ought to be, and her face is puffy, so they are considering giving her some (oh, I can't remember that drug's name, sounds like lasix but that's eye surgery... you know what I mean, a diaretic). But again, dearest grandparents, do not freak, it's all completely within the normal parameters for what she's doing. All the nurses say "that rATG is some nasty stuff."

My sister in law Melody brought me lunch (I never mentioned that my other sister in law Jennifer brought me dinner a few nights back) today, my friend from high school Drake Nunn, who has a daughter Julie who spent a lot of time here beating liver cancer and who now works for Children's doing fundraising (Drake, not Julie), came by today, and a very old friend Joe Schock brought me some delicious lemon poppyseed bread that his wife Angela made. Oh, one of Kate's nurses is a girl I went to high school with, Jane Campbell, now Estes. And there are 1500 hits on the website! Wow. Thanks everyone. We are quite comfortable and mentally prepared for the long haul as long as you keep in touch.

Blessings, Lesley

ps. I put a picture of the whole family on the photo album page.

Sunday, August 3, 2003 4:40 PM CDT

Hi Everyone,

Well the time for Kate to feel bad has come a bit sooner than I predicted, but don't freak out, it's all completely normal.

Kate had her first of two days of Cytoxin today, no real side effects to speak of. But she also had her first of 3 days of rATG, a drug derived from rabbits that kills all the T-cells in her blood. The T-cells would otherwise attack Wen's marrow. Since it's an animal's stuff, of course it causes a lot of side effects when injected in a human. She's got a fever, a higher heart rate, slightly lower BP, has thrown up a little, is a bit loopy (she said "No Flush!" and "Ball?" and otherwise talks jibberish), and generally feels bad. She's sleeping just fine now. The doctors say it's all normal and they've given her lots of other drugs from Benedryl to Demerol to control it.

We got an email today from the aunt of 6 year old Jorrit who is getting a transplant in the Netherlands. He's day +5 (transplant day is day 0) and they specifically mentioned, without any info from us, that the only bad day they had was the first day of rATG but that it was better the next two days. Our docs have said it will most likely be better tomrrow.

The other problem we have is that her central line isn't giving a good blood return. It has pulled out a little (for you docs/nurses out there, only a little - the cuff is out) but that should still work OK. It may just be positional as it works sometimes. But they have cultured it just to be sure and have ordered a chest X-ray to see where it is. This isn't the best situation but not uncommon. So pray that that gets resolved without any invasive procedures.

Again Kate woke up at her 10pm dose and she and Darryl stayed up a long while. Then again the nurse woke him up at 6am to say her glucose was low and she needed to get up and drink juice (right). Then again Dr. Sande said it was no big deal, she's just one of those people who have low glucose in the a.m. Then again Dr. Sande upped the "sugar" in her IV. So I've asked her to tell the nurses NOT to wake us up anymore at 6am unless her glucose is dangerously low. When the charge nurse is here tomorrow I'll talk to her about it.

Kate is hooked up to a million leads and 3 or 4 bags of medicine so she couldn't reach her playmat this morning and hasn't wanted to play or been asleep the rest of the day, so it's been quiet.

I hear Wen is having fun and seeing all sorts of movies that I'm glad I don't have to see too! But I miss him and will look forward to seeing him on Tuesday, which by the way is Darryl's birthday.

Love to you all, Lesley

Saturday, August 2, 2003 1:51 PM CDT

Hi Everyone,

Kate is doing great again today. Dr. Sande said to us today as we were sitting at the nurse's station eating breakfast (it has a long bar with stools and chairs) "She is doing just great." Kate had BBQ potato chips for breakfast.

For those of you surprised that she's not feeling bad, just wait. We don't expect her to begin the yukko part of all of this until maybe next weekend. So far the meds she's taking manage all the immediate side effects like nausea, but today she finishes the Busulfan and tomorrow begins 2 days of Cytoxin (more chemo) and 3 days of rATG (kills all the T-cells in her bloodstream). The rATG is derived from rabbits and therefore is really incompatible with humans and causes lots of side effects during the time she takes it. By next weekend she should be well into the no-immune system, bad mouth/digestive sores, not eating (therefore with a feeding tube), etc. etc. But we are prepared! We think.

So much for the pleasantries.

Darryl brought a Little Tykes play thingy with a slide that takes up all the empty space in our room. Kate loves it and it lets her get a little physical activity in the room. I didn't think about the IV when I picked it out, so she can't actually climb into the thing and slide down herself, but we can poke her up into it from the slide entrance and then she can play and then slide. Dr. Sande says that after she is done with her Cytoxin (they have to flood her with fluids during that - they have warned us that we will be changing diapers constantly) we can unhook her from the IV for an hour or so each day and she can play freely.

She is acting much sweeter now as her favorite nurse Keisha is back on. Of course she acts just fine when her daddyis here - she didn't even cry when he rinsed her hair in the bath but just sat there so still. She actually said "please" to Sonya the clerk. But when Dr. Sande introduced her to the resident on call for today she initiated her with the customary greeting of "NO". Kate took her Busulfan dose at 10am all by herself mostly. She put on the chemo gloves (blue rubber gloves that would be great for dishwashing) and held the syringe to her mouth, but I had to help push the plunger. She only has 2 more doses of that. Then everything but the Bactrim will be via IV.

I slept at the Hope Lodge last night. It's in Five Points next to the Red Cross. It's just exactly like a hotel, but with more common areas, absolutely no food or drink in the rooms (not even any glasses for water), really nice people working and staying, a big area with 4 kitchens, and plastic pillows and mattresses. I slept the whole night through but will remember my own pillow tonight! It was nice but I do hope when we are discharged that they will find us an apartment. I think it will be difficult to live at the Hope Lodge with a toddler, but we could manage if we had to.

Darryl didn't make out quite so well. He said Kate woke up for the 10pm Busulfan dose and she wanted to stay up and play. They sat in the chair and watched a Discovery channel show on boats and finally went to sleep at 2:30. They she was up again at 4pm and he never could get her back into bed, so he let her sleep with him. That will be a hard habit to break now. They are both sleeping now, Darryl is snoring away, Kate is sleeping sideways, as she always does. This sideways sleeping is what makes sleeping with her an exercise in insomnia, but she's in her own bed so who cares, until her foot gets stuck out of the bars.

We are over 1000 hits on the website now, I continue to be amazed. As I have told many people, even when I don't feel close to God because I have chosen not to, He lets me know He's still there. God works in this world through His children, and it helps to know so many of them are out there praying for us. I find it difficult to do much myself, but learned from Suzanne Matthews to say "Holy Spirit pray for me!" and trust that He does. God does not abandon us no matter what.

Blessings, Lesley

Friday, August 1, 2003 2:28 PM CDT

Hey everyone. Before I continue with the update, I thought I might mention that if you don't want to send your messages via the guestbook (although that's fine if you do, but if you signed it already once...) you can email me directly. I get and send email just fine now, thanks to someone in the family knowing something about computers (sorry dearest parents, but that Computer Engineering degree I got has gone to waste). The address is down there on the web page somewhere. I'm also going to put some new pictures out. Wen caught a record bass and that needs some publicity!!!

Kate has had a GREAT morning. She's been in a really good mood and has made friends with Beth and Keisha, her nurses today. I think we have rotated on a new shift. Sherri the child life specialist played with her for a long time today, long enough for me to get my exercise tape mostly done and get a shower. They got Kate this big doll house with dolls from an unused room and she's enjoying trying to climb up the staircase herself (3 toes fit on it) and also putting the dolls on the roof and making them slide down. She kept seeing the house through the door of the unused room and saying "my howwwse" until they gave it to her. She played basketball with Sherri, Beth, and Keisha and also had a few footraces with Keisha.

Darryl got here today with a shipment of frozen meals from my stepmother Linda and some macaroni and tomatoes from my great-aunt Nancy. Yum! But I do have to say that the freezer is now full, so if this gives anyone some good ideas, please wait a bit! He also brought me a bedside table to give us some more table space and also a play gym for Kate. I haven't seen it yet, but I do know it has a 4 foot slide, so there goes all that empty floor space in our room.

Kate's magnesium is a hair low so they are giving her an infusion of that today. This is very normal for transplant patients, and she'll need magnesium supplementation for a while. They have also increased her Busulfan dosage, almost double. They drew blood again for 6 hours on Wednesday and that's how they know how much she actually "absorbs" and she needs more. She ate two bowls of chicken noodle soup and a little bit of milkshake made with Ensure-like stuff last night. This morning most of a large slice of french toast and a bit of water but a lot of chocolate milk. We just call it chocolate though because if you offer her milk she says "NO MILK". She had more chicken noodle soup and some french fries for lunch.

This is an interesting place. I think the ratio of workers to patients is about 7:1. There are two pharmacy workers, a transplant coordinator, a transplant supervisor, a nurse practitioner, a clerk, a cleaning person, from two to four nurses, always at least one doctor (there are rotating residents that spend the night, one ofwhom is all of 12 I think), and another woman whose job I haven't figured out yet. Oh, and usually a nurse or two in the outpatient bay. And there are TWO patients. But since I have to leave Kate to go to the bathroom and I can't get my own water (no one but staff allowed in the pantry and no drinking from the taps) I suppose it might take that many.

I will be staying at the Hope Lodge in Five Points tonight as they only allow 1 person to stay in the room, so perhaps I can get an uninterrupted night. Our night nurse last night (who we had the first night also) turns on too many lights and goes in and out too much to sleep through, so Kate and I got up at 4am and watched the news until she fell asleep again at 5:30 in the bed with me. But she did sleep until 9am!

Blessings, Lesley

Thursday, July 31, 2003 2:02 PM CDT

Hi, Kate is sleeping and looking like a little angel, instead of the "uber-two" that's been terrorizing the SCTU today. She screeched NO at Dr. Sande (who's back from vacation today and yesterday was Dr. Lucas' last day here) several times and refused to take any meds for me. But I rushed back from my shower at 10am to help with the Busulfan dose and she took it just fine from Nurse Renne. Of course, Renne bribed her with gum.

Pretty much everything is just fine. Kate has a mild urinary tract infection which she brought in with her and so they have increased her Bactrim dosage. This isn't uncommon for girls but it's the first she's had. She is still doing the same routine as yesterday and will be the same the next two days I think.

The pyschologists came to try to finish their evaluation with her. She managed it pretty well, considering that she doesn't like to play anything that is someone else's idea. They have her do stuff like put things on top, under, beside. She has to do puzzles, match colors, etc. She HATES the book with pictures - stuff like name the picture, identify the object from one pic to another, etc. She started this a couple of weeks ago, but it's just too much for anyone but the most compliant child to do in one day. Of course she passed with flying colors. And brilliant people are always tempermental.

We both slept really well last night. Kate slept through everything and i doubt she was very awake when I gave her the Busulfan at 4am. I slept really well too. I think I might have stirred at the 12am vitals but the nurse had to wake me up for the 4am stuff. I think she was in there at 3:30 also but I just went back to sleep. Totally unlike me and I'm glad for it. Her night nurse, Shannon, who I really like too, keeps wanting me to get her up at 6am or such because her glucose levels are low and she needs some juice. So I mentioned it to Dr. Sande and she said that most people are low in the morning and no big deal. So I ain't trying to feed this child no more juice at 6am. Dr. Sande did order her some saline drip with more "sugar" in it to keep her level up.

My college roommate Sally McMillan Purnell's mother in law Gloria (Glo) brought me lunch today. Kate ate a pancake for breakfast but would only have a milkshake for lunch. The other two patients on the floor (a 20 year old who is discharging today and a 13 year old from Huntsville who is on day 21 and just engrafted yesterday) don't want their food at all and don't even want it delivered to their rooms. So the nurses are not in the habit of delivering the meals, and we have gotten breakfast and lunch late. We did, however, get dinner at 4:30 yesterday so go figure.

Cleanliness is next to Godliness around here. You have to get buzzed in, wash your hands, go through more doors, wash again to go in the patient room. Wash to go out of the patient room. I have to use the restroom and shower in another room, so that's a pain. And more handwashing. Any toy that hits the floor has to be washed. This is a LOT of washing for a two year old who PLAYS on the floor. I've been tryng to encourage her to sit on my bed and play so of course my bed is covered with grape juice, chicken grease, etc. They have her one section of a gymnastics mat but it's really not big enough so we are waiting on another section before we take it.

I saw even more guestbook posts, some from people I have no idea how they know about us, but we are getting used to that. Thanks everyone.

ps. King and Larry, Kate loved the card with the waggy dog tail, until she pulled the tail all the way out!

Wednesday, July 30, 2003 8:07 PM CDT

Hi Everyone! Thanks so much for all the encouragements on the guest page. Wow, so many people that I don't even know are praying for us.

Kate is laying (lying?) in her crib behind me watching "Kate TV" and supposed to be going to sleep, but she's screaming NO! as she has all day. It's been a very "two year old" day. I'd love to blame it on the medicines and intrusions and strange surroundings, but she acts this way at home, too. She screeches NO! at everything, whether she means it or not. I handed her a cookie and she said NO as she took it and ate it. She has scowled at all the nurses except Renne, who made friends with her by getting her a hot dog and french fries. And now she's over there smiling and flirting at Shannon,the night nurse. Kate TV is home movies. After we watched ourselves on the news she kept pointing at the tv and saying "Watch Kate" so this keeps her happy.

Otherwise we've had a pretty good day. She didn't like taking her medicine at 4am this morning as she just wanted to sleep. Then they kept getting a low temp on her so they cranked up the heat. Turns out it was just a low battery on the thermometer (perhaps the fact that it took 3 minutes to get a reading would indicate this) but we didn't get that fixed until the next shift. Her glucose was low this morning too so I had to get up with her about 6:15 and get her to drink some OJ. She never woke up through the whole thing and didn't get up until I made her get up just before 9. She took a good nap (we both did) this afternoon. She took her Busulfan really well at 10am - she got a taste and made a face and said YUK but drank some OJ and got it all down. But then at the 4pm dose I had to force it in her! We'll see what happens at 10pm. All her meds are IV except the Bactrim and Busulfan. They even give her Benedryl via IV. She gets Xantax to reduce acid and Zofran for nausea.

The nurses are trying to get her used to the idea of wearing a mask. Kate likes to go out in the halls and walk or push her stroller or ride the wheelchair. Even better is pushing me in the wheelchair, which means I have to scoot along with my heels to make the chair move. Good thigh work. Soon she won't be allowed to leave the room without a mask on, and she's not going to like that. So some ofthe nurses have decorated masks and they wear them around her. Kate colored one but she screams at you when you suggest she try it on.

Jennifer the child life specialist came to play with her today but of course Kate screamed at her. So Jennifer and I played and Kate thought maybe she ought to get in on that. Jennifer brought a doll with a "noodle" which is the tube that hangs out of her central line. She brought a doctor kit and syringe so Kate could doctor the baby.

It only took me until noon to get a shower, but I did get most of an exercise tape done, so I consider today a personal success.

Talk to you all tomorrow, love you.

Tuesday, July 29, 2003 11:00 PM CDT

Short version: Got all unpacked, learned all the rules, got a transfusion, got Dilantin, will start the Busulfan chemo at 4am. Keep the cards and letters and emails and guestbook notes coming.

Long version:

Whew! I was waiting until the end of the day to write so I could get the whole day in. I didn't realize that we have to do the bath, medicines, IV, dressing change, mouth care, and screaming baby who won't sleep in the crib bit all after 9pm.

We got here late today after one flat tire and while that was being fixed we found another tire that was messed up. If it's not one thing it's another! We unpacked (only took two trips) and tried to make the room look a bit cozy. We have a really big room and since Kate has a baby bed I have her bed. I brought a lamp to give us some non-florescent light and new toys and books and pillows, plus some family pictures and such. It still looks like a hospital room!

Darryl set up the computer for me so that it is just like being at home, with no email address restrictions. But a the moment I can receive messages but not send them, so we are working on that. WOWOWOWOWOW to the website - 225 hits today. I didn't know that we even knew 225 people, I should send more Christmas cards. Thanks to everyone who has signed the guestbook and sent us messages, it really helps. I can see where this is going to be one of those experiences of absolute boredom punctuated only by periods of extreme duress. Kate is already saying "Go home" and going to the doors of the unit and saying "out".

The child life specialist came and brought Kate and Wen new toys and spent some time with Wen playing and being sure he understood everything. Kate got a transfusion and took a nap. She was really really fussy and ill-tempered all day (just your normal 2 year old stuff) but after her nap and some dinner she was her better self. She has been cruising the unit with her stroller and pull dog and riding in the wheelchair.

Speaking of dinner, she is on an low-microbial diet to keep her from catching anything from her food. Basically, nothing raw or even crunchy. She can have bananas, oranges, and melons if you wash the skins first. But no grapefruit, it somehow messes with the cyclosporin (anti-rejection drug). It's pretty much common sense, but the hard thing will be that she can only have distilled or reverse osmosis filtered water - even in soups. No ice, no food, no tea, no coffee, etc. without that kind of water. She will be on this diet for the rest of the stay plus for a while when we go home.

They have now hooked her up to a saline IV that she will have for the duration, I think. She has had her Dilantin (anti-seizure as a precaution with the Busulfan) and some Bactrin (antibiotic). She will begin getting the Busulfan (chemo to kill her marrow) at 4am. They will then do blood draws at 15 minutes, 30 minutes, and every hour for 6 hours. I also learned how to swab out her mouth with three different rinses. She's supposed to rinse and spit but for some reason that didn't go well.

So at 4am we will be drugging, drawing, and swabbing. We have to do mouth care about 6 times a day, including midnight and 4 am. But they have suggested we do it more often since Kate is already predisposed to thrush and cold sores. Oh, mouth care is because the chemo kills all your fast reproducing cells, including those in your mouth and entire digestive tract. You get sores all in your mouth and can't use a toothbrush and regular paste. You have to treat the sores and prevent infection.

She will be getting the Busulfan along with the other drugs for the side effects and possible problems every 4 hours for the next several days (round the clock).

To end on a happier note, we have received lots of gifts before we left, and appreciate them all. Real thank you cards will come when the boredom sets in. Especially appreciated are the outfits that came with matching hats, the pad of paper for the list of stuff I forgot (toothpaste, batteries), the blueberry banana nut bread (no time to get lunch), and the art set for Wen. I'll enjoy everything that I got when I remember what else I got that I didn't need to get into today.......

Thanks everyone for your outpouring of love. Even though I just haven't been able to respond back personally everytime I really really do appreciate it and need it!

Monday, July 28, 2003 9:44 PM CDT

Kate, Dad (my dad - Ken), and I spent today in the outpatient clinic doing Kate's Busulfan test. They gave her a dose of Dilantin first (because the Busulfan can, rarely, cause seizures) and a saline drip. Busulfan for Kate is given orally and is supposed to be yukky. So I laid Kate down to "force" it down her, but after she took it all she sat up (crying) and said "No Yuk". Then a period of sleepiness, then total hyperactive "TWO"-ness all day. They drew her blood every hour to see how she metabolizes the drug and will set her regular dosage from that. When she starts chemo she will take a dose every 4 hours (round the clock) for several days.

Our nurse Jennifer was really helpful in getting us ready to admit tomorrow. Turns out that she is here from NY while her husband is in orthodontic school. In NY she worked in oncology at Schneider Children's Hospital, which is where the two DBA docs are and where we took Kate last Easter.

The car is packed with whatever I think we might need for the next 3 months and the laundry is done and the bills are paid (mostly). People have been sending us lots of cards (got some at the hospital today even!) and gifts and food and cash - all much appreciated as are the emails even if I don't respond to them all due to time contraints. So we must be ready to go. It's a leap into the unknown, but a leap of faith. Keep us in your prayers.

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