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Saturday, September 5, 2009 0:42 AM CDT
Could it be?
Is this a hallucination?
No!
I'm updating my very own caringbridge.
Like always, it has nothing to do with the fact that my mother has asked/pleaded/threatened/bribed/forced me to. Just sayin'.
Alllll right. I was going to attempt to condense all memorable events from the past year into one update. I realized I was going to fail pretty bad. So I decided.. that I would just wing it.
One reason I'm updating is to commemorate my 57th birthday. Today (well, if you're going to get technical with AM/PM, yesterday) is 2 years since I had my transplant. Pretty hard to believe it's been that long since we were living in Durham, isolated from the world. It's also pretty crazy how the mind can get into new habits so quickly. Thinking back to my daily routine in NC, how it seemed so normal; And as grateful as I am for everything, these days I take for granted things that I would never have been allowed to do back then. Going to the grocery store is a chore instead of a treat. The human mind is pretty fickle.
Speaking of treats that have become chores -- School.
Actually, it's not all that bad. I'm not really digging the whole waking up at 6AM thing, or the massive amount of school/homework that an AP class apparently entails, but other than that I actually like it pretty well. It's good to see everybody again, and sort of be on a schedule again. That doesn't mean that I wouldn't rather it be Summer, haha. They kind of divided the school up into academies this year; they all have fancy names, but it's basically Art, Engineering, Business, or Professional Services. Since right now I'm planning on doing something with forensics after I graduate, I obviously chose the Science Academy, because you can get science credits for college. But, the downside was the unbelievebly bad electives. They too, had fancy names. Agricultural Tech. = Farming. Industrial Arts = Shop. Turf/lawn management = Free lawn mowing labor for CHS. Lots of winners. Luckily I don't have any of them, I have Spanish, English 2H, AP World History, PhysicsH, and BiologyH.
Mom has probably said something in one of her updates, but we've been going to a new church for like the past 6 months. I look forward to it every week, and I'm actually involved with volunteering and things that go on instead of catching zzz's. There were some great people at the old church and I miss everyone, but I think that this is where I need to be.
This month like in 2 weeks, I'm going to Durham for my 2 year checkup. I'm actually looking forward to it in a weird way, because after we get all the appointments done, mom and I usually stay a day or 2 and shop some and stuff. The mall in Raleigh is like 5 times as cool as the one here. Just putting that out there. I also have to go to the knee doctor while I'm up there, and see if/how much my knee death has progressed. You would really think that if a bone was dead, it wouldn't hurt. I guess that would be too easy.
Umm I'm running out of major things to talk about, and it's also 3:45AM, so I think I'm going to wrap this up.
Before I do though, I bet that you all would love to hear a Dude story, right? Ok:
Dude has always been afraid of the gates, and he knew even when the gate was open that he wasn't supposed to go into the living room. However, my dad loves Dude. A lot. Maybe almost rivaling Ian at times. And due to numerous occasions where dad has coaxed Dude into the living room so, if he would lay down and 'be little', he could be a part of the family, Dude now thinks that he is entitled to prance into the living room whenever he pleases. We have a cat. We don't really OWN the cat, but we pretty much have one, because the cat in question really likes our front porch. Our cat's name is PO. I'm not going to tell you what PO stands for, but suffice to say mom doesn't like the cat, and wishes it would go away. Dude either really likes PO, or really wants to eat him. Everytime Dude is walking around the living room and catches sight of PO through the front door, Dude proceeds to leap over to the door and bark. And bark. And bark. And PO just sits there. Today Dude was doing that and we were all laughing, I went over there, and he turned around very quickly and ran across the room in his furor. Dude's head is really hard. I fully realized this when, as he turned around it hit my bad knee. I may or may not have let fly an expletive or two(mortal danger), and then I just kind of slumped on the stairs for a few minutes, laughing and grimacing at the same time(didn't know that was possible), until I could move again.
So that's the most recent Dude story.
And with that, I will end my update.
I really do appreciate how many people still read this even though I'm slack on updating it. I hope I keep hearing from you guys.
-Leigha
Friday, June 26, 2009 1:42 PM CDT
It has been crazy busy around here, but in a good way. Weekend before last we went on a spur of the moment trip to Lake Lure, NC. A friend told us about the huge BBQ festival that's held nearby every year. Bryan called to get a cabin, but they were all booked up. We ended up getting a beautiful house on the top of a mountain all to ourselves for the same price. I never would have said "Hey, let's go to Lake Lure," because quite honestly, I didn't know it existed, but it is a beautiful place that I would love to go back and visit. It took awhile to get used to the windy, mountainous roads, but the views were awesome. Lake Lure is where the movie, Dirty Dancing was filmed. We also went to Chimney Rock which is were Last of the Mohichans, Firestarter, and Brother Where Art Thou were filmed. We took the elevator up to the top of Chimney Rock and it was unbelievable up there. The next day, we hiked to Hickery Nut Falls and climbed under the waterfall. Not to mention that Barbeque Festival was awesome. People come from all over the US and Canada to compete for the title of the best bbq. You buy tickets and can go to each booth and sample. We had bbq, wings, funnel cake, fried green tomotoes, and they even had a beer garden!!
Then the next week we were just chillin at home and I got a call from Dawn Richardson from Camp Debbie Lou. You should check out their website in order to see what a fantastic camp they have made for families with cancer and their families. They have an awesome hunting lodge/farm in Latta, SC where they have added a swimming pool, archery, go-cart tracks, bumper boats in the lake. They have stables full of horses and even a chapel. We went a few years ago, but they had a cancelation at the last minute and Dawn thought of us, because we have stayed in touch, especially Ian, who had just sent her a letter that she received the day they received the cancelation. So we were lucky enough to go back to Debbie Lou a second time. Bryan had to work, and make up a shift for a coworker who had covered for him the previous week when we went to NC, but he joined us on Saturday and had a full day and night at camp. It was awesome. We are both going to volunteer there next year. I can't put into words how it makes you feel to be a part of that Camp. You can definately feel God's presence at Camp Debbie Lou, that's for sure.
Well, I'm off to the grocery store, pay some bills, and finish all the Camp Happy Days packing. We had to go yesterday and buy a few pairs of shorts and other items the kids needed to pack. I have threatened Ian not to lose his clothes, like he has done the past 2 years, but we'll see what happens. Both Leigha and Ian are so excited about camp and I know how good it is for them, but I always miss them SO BAD. They will be gone a whole week!!
At least you know that you will be getting a personal update from Leigha, because I can always get her to do one after Camp Happy Days and usually after Christmas!!
Have a great weekend everybody!!
Wednesday, June 10, 2009 12:25 AM CDT
Hope everyone is doing well. We did not get the biopsy results back on Friday, but the nurse called on Monday to say that Leigha needs to go back for more surgeries. We weren't the most comfortable at that particular drs office, so we had the results sent to Leigha's ongologist at Duke. I spoke to Andre, part of the team at Duke and he said that what she has ( Melanocytic nevus) is pre-pre-cancerous and that I shouldn't freak out too much. If she needs surgery, we will go to Duke b/c they are the best. Leigha doesn't even want to go back to the other place to get her stitches out, she would rather her Dad remove them. I'm all about being truthful and to the point and honest, but the dr. who did the original surgery told her that he was very concerned about the places on her foot and when asked what would happen if it were melanoma, he replied, "You have surgery and if that doesn't work , it does you in." Ok, that might not be the best way to put it to a 15 year old who has been through everything that Leigha has. She didn't freak out, but said she would rather not go back there.
I got an email today from Leigha's donor. I forwarded to Bryan at work, b/c he's working OT and won't be home until tomorrow morning. The donor center told him that his original consent was lost in the mail. I ended up calling the lady from the National Marrow Donor Program who helped me organize our Strongman Competition/Bone Marrow Drive last August and she gave me the number of one of the "higher ups" at the NMDP who made it seem very mysterious and finally told us that one of the Registries was trying to plan a meeting down the road, but decided that if both parties were wanting to communicate now, that they would release the information. So, they did and Leigha's donor's name is Tim and he is from New Hampshire and he sent us pictures of his beautiful family and now we have faces to put with our prayers everyday! I did ask Tim in an email if he really liked hot wings, b/c we have wondered why Leigha has developed a penchant for them. After transplant she did not eat (literally for over a month) and when she did start eating, it was hot wings and now everytime we go out to eat, she orders hot wings and she never liked them before.
Thanks for checking in on us. Things are good-even though we need to follow up with the dermatologist in Durham, it could have been a lot worse. Leigha hasn't been able to go to PT for her knee, because of her stitches and holes in the bottem of her feet, but we will resume as soon as we can, because it did seem to be helping her.
Well, I better get some work done. XXOO
I will try to persuade Leigha to do a personal update soon.
Saturday, May 30, 2009 8:14 AM CDT
I know I have been horrible about updating. We still check in and check on our other caringbridge families, and I will try to touch base on some stuff that's going on.
I think I may have mentioned that Leigha's necrosis had progressed. When we were in Duke lask month, she had another MRI. Well she has been going to physical therapy twice a week and I really think it's going to help her a great deal. Not only is she helping her knee, but toning up all over.
We do have to go on Monday and get a place looked at that's a couple inches below her knee. Deb from Duke had to help us get an appointment. I know it's always difficult to get an appointment at a dermatologist, so I asked Deb for a referral b/c Dr. Lindsey is out of town. They told her initially that it would be Sept. before they could get her in. But, they worked it out where Leigha would see a plastic surgeon rather than the dermatologist. If they choose to remove it, she will get stitches and be off her feet for 1 week. The person who scheduled the appointment said it would be better if she did not go to school, but it's the last week and Leigha didn't want/couldn't miss, and I didn't want to put off the appointment even for a week, so they agreed that if she kept her leg elevated and didn't walk "much" she would be ok.
OK, some other really BIG news. When Leigha's donor was found on the registry, we were told that he would like to get updates on how she was doing. We had to be really careful about not putting anything personal in the letters, no names, and no info as far as what hospital she was being treated, if there where mountains, that our home was near the beach, etc. I wrote a couple letters and Leigha wrote one and we gave them to the social worker at Duke, who passed them on to someone at the Bone Marrow Registry, who looked them over before giving them to the donor. Well after one year, we were able to submit our contact information to be passed on the the donor and if he chose, he could submit his contact info and it would be passed on to each of us. The reason is that there is a mandatory 1 year wait before you can meet the donor or they can meet you, even if you both want to. Well, after submiting our info last September, we never heard anything, so we just assumed that the donor didn't wish to have any communication. Although we really wanted the opportunity to say thank you, we understood that there could be many reasons why, and we were just very thankful for what he has done for Leigha. Well, I did keep calling our person at Duke, and found out that the lady who handled donor information had been given several other "job titles" and was overwhelmed with too much work, then she had some medical issues and was out of work for awhile. I understood that with all that was going on, they had other more urgent matters to deal with. When she got back, she returned my call and said that she would make sure Leigha's contact information got sent to the Bone Marrow Registry again. Well, fast forward past several months of me calling every week or so to check in. About 2 weeks ago, I heard that the donor wanted to contact us and had filled out his information sheet awhile back, too. I found out that due to some "publicity" involving the donor, that someone at the Bone Marrow Registry had decided that it was not a good time to pass on the information. There could be many reasons that they may feel this way, I guess. If the person just won the lottery, I guess they would worry that we'd have our hand out. Or if he's famous, maybe they'd worry we might be stalkers, or dozens of scenarios. I personally don't care if the guy just got out of prison, I would like the chance to tell him Thank You for his wonderful gift. The whole time I thought it was his choice not to have contact, we were ok with that. But now, knowing that he wants to communicate with us, too, it's hard to wait. Especially b/c he may be thinking we don't want to have communication.
I was told that the person at the NMDP had his info on her desk but could not pass it on without clearance from her supervisor, which our social worker had never heard of before. She said that this has never happened, that usually as soon as the year is up and both parties wish, the info is immediately exchanged. I called someone I know at the NDMP and she said that that was really strange. Sometimes they will plan a suprise meeting, but as much as Leigha would like to meet him, she would prefer it were more personal. She doesn't want to meet him at an event with lots of people watching every reaction. If they wanted her to attend an event afterwards, she would, but she is worried to death that that's what's going on. Well, I'm sure whatever is meant to be will be. The more I think about it, the suprise meeting scenerio makes the most sense, but we will have to wait and see!
I better get off here. Ian has three friends over and I need to go see what they are up to!
Leigha has the rare opportunity to sleep in and when she gets up we will be heading to the book store and have a little "girl's day".
Have a great weekend, Everybody.
And Kath, if you read this, you inspired me to update but reading yours and give Jared a kiss on his 2nd Year Anniversary!!!
Monday, April 27, 2009 12:03 AM CDT
Bryan's finally off work, but I haven't seen him yet.
I am in between 2 closings and have a listing appt. on Cultra Rd. that I need to leave for 5 minutes ago.
I just was thinking very hard about some long time friends who are facing a very rough time. Janet is a beautiful wonderful woman who I met when I first moved to SC almost 20 years ago. You will never meet a kinder person and her smile can light up an entire room. (You've heard people say that, but it's really the truth with her) Her husband Jeffrey is a great person and loving husband and my thoughts and prayers are with them both.
Please, please take a minute to say a prayer for them. That they have some peaceful and painfree time together and pray for peace and comfort for them both. If you would like to send a kind word or prayer, her website is:
http://www.caringbridge.org/visit/janetboatwright
Thanks, Have a good day and hug your husband/wife, boyfriend/girlfriend, kid, dog, whatever, and let them know you appreciate them.
Friday, April 24, 2009 11:34 PM CDT
Hello Everyone,
This will be brief because I am going to catch up on some much needed rest. Thank you to everyone who has called and left emails expressing concern over the fires. I didn't get a chance to answer all of them,because work was crazy and Leigha had a dr. appt., but I really appreciate it. We are safe and our home was not affected by the fires. The worst of it is in North Myrtle and some of Carolina Forest and the other end of highway 90. Poor Bryan worked has regular shift of 24 hours and then pulled an overtime shift of 24 hours. He came home and was called in a few hours later for the fire. Tomorrow will be the 5th straight day he has worked. I've talked to him a few times on the phone, but I think his battery must have died. I just talked to someone on the command bus, and they said he was fighting fire, but they were about to switch him out, and that Colonial Mall had cots for the firemen to get some sleep. They said things were alot better tonight, so I'm hoping maybe, just maybe he can come home tomorrow.
Leigha had another round of her re-vaccinations today and was very brave. So far, she doesn't feel bad from them, but I'm sure her arms will be sore tomorrow, especially the tetnus arm.
She has an appt. Wed. w/ her eye dr. for her annual "contact exam", but I may have to take her sooner, because she has been rubbing her eys and they are kind of red and feel "weird". I asked her if she has been changing them like she should, and convinced her to wear her glasses over the weekend, but she is absolutely not going to wear them to school she says. I have 2 closings on Monday and 2 other appointments, so maybe if Bryan is home, he can take her to the eye dr. earlier.
Well, going to go spend a minute with Leigha and then get some sleep. Ian and his friend, Ian, sound like they are having an extreme Halo game, I can hear them from here, and I'm wondering if they will decide it's time to go to bed, or if I'm going to have to go in there and be the bad guy. :)
Leigha's concert at House of Blues got cancelled because of the fires, but she didn't seem too upset. We are just lucky that our home is not affected and that Bryan is safe.
Good night, and thanks for checking in on us!
Thursday, April 23, 2009 0:33 AM CDT
I had the best intentions of updating this site on a regular basis. There just doesn't seem to be enough time in the day, or enough days in the week. I have been working alot, which I am grateful that real estate is picking up and I am actually working hard and making a little money. I wish I would have gotten my real estate license years ago-I really love my job and that makes such a difference. I always thought that people who work "for themselves" were so lucky and could make their own hours, and that's true, but to succeed, you really need to put a lot into it. I have always worked hard, but before, whenever I got off work, my time was my own and I could watch tv, or go out, etc. Now, I have lists that transfer to the next day and just get longer instead of getting done! I'm not complaining-I love my work. I have 3 closings in the next week and have 8 properties listed, which isn't bad for someone "new to the business". My point is that I worked all day, got the kids from school, worked a little more, cooked dinner. I didn't spend as much time with the kids and Bryan as I would have liked, but I usually make time no matter what. Example, I am actually pulling an all night house cleaning, so I can work while the kids are in school tomorrow and take the rest of the day off, and actually do something fun without feeling guilty that I should be cleaning house.
Leigha and I have been bike riding, because the dr. said it would be a great low impact way to get some exercise. I haven't been skateboarding with Ian in awhile, so maybe that's what we'll get into tomorrow. Bryan is working tomorrow. He was supposed to be off today, but got called in for a huge fire that is still not under control. It is very windy here, so the fire has spread and caused a lot of damage, and a lot of people have had to evacuate. Right before Leigha went to bed, she told me it was threatening Brookgreen Gardens. A friend's restaurant right here in Conway burned today, too, in a separate fire.
Leigha is doing well. I'm going to take her to the eye dr. tomorrow. It's time for her annual appt. for her contacts, but she has been having some trouble with feeling like something is in her eyes, but we can't find anything. Her eyes are also a little dry and she's been rubbing them alot. GVH causes dry eyes, but I think it would be unusual for it to develop at this time, but I will probably email Deb at Duke if the eye doc. can't find a reason. I will probably tell her anyway if you want to know the truth. I keep her pretty well posted. :)
In addition to the eye dr., I need to make the entire family dental appointments. We all need a cleaning, I have a couple cavities, and Ian needs braces. I have yet to schedule Leigha's pt, which she is supposed to be getting twice a week for 4 months. Dude needs his shots and heart worm medicine. Leigha needs the chiropractor again. Everyone needs haircuts (especially Ian!) and my eyebrows look like caterpillars. Oh and Leigha is going Friday for her next round of immunizations. (She has to get all her "baby shots" again post transplant) I also need to go to the dermotologist to have a few places looked at on my leg and Leigha should probably have an appt. there as well. It may sound like I'm complaining and really I'm not, I'm glad to be making these "regular" appointments-I truly didn't realize how much I had to do until I started typing it. And I think I actually may be forgetting something.
Bryan and I actually made time for a lunch date yesterday. He picked me up at my office in his Challenger and we went to the Jerusulam Restaurant and I had a wonderful lunch of falafel, hummus, and kubbah, some of my favorite Mediteranean food.
Leigha babysat tonight for a sweet little boy named Nicholas. Bryan was at the fire and I was at Bible study so she watched him here at the house and did a great job. If anyone local needs a great babysitter, let Leigha know. She is great and is saving for her car. Which I can't believe she will be able to drive (w/o me in the car) very soon!
Tonight was my first time going to the Bible study, which is actually called a MyGroup. I met some really great people and enjoyed it tremendously. Long story short, and I have not talked about this, but when Leigha was sick, we could not go to church because of her immune system. Then we quite honestly had gotten in a horrible habit of not going to church. We had probably gone maybe 4 or 5 times since we came home from Durham. I know that's horrible. We knew how blessed we were, we had a church home that we had been members of for 16 years, we had no reason at all for not going, but just didn't. I think I had some buried weird anger issues that I did not even address about Leigha getting sick and going through everything that she did, but I truly was thankful and attributed her remission and recovery to God. I did have some issues about the other kids that we knew that did not do as well as Leigha, and lately she and I spoke about our feelings and had been feeling the same things. Guilt about being initially angry, guilt at questioning why the other kids died when their parents loved them just as much and prayed just as hard, and were just as good people. I have come to realize that I just need to put my trust and faith in God and not question those things. I know that my own life is a gift, that my marriage is a gift and both of my children are gifts, and I am blessed that God gave of a second and third gift of keeping Leigha here with us. But we are all human, and all have those moments of doubt. Speaking of doubt, it was something that the first Bible study I went to addressed that, I won't go in great depth, but we were talking about Peter walking toward Jesus, and then getting distracted by the waves and wind, and sinking, and Jesus asking him why did he doubt. Then we talked about doubt and what that meant and I got such an understanding of what that scripture actually meant. That's been happening alot to me lately, and I really feel like I am growing spiritually. It's a wonderful feeling and I really feel like I am on the right path, and it's really making a difference with how my life is going. Work is great, home is great, my friends are great, and all and all things feel really good and like there is more of a purpose to it all. Blah, blah, blah, I will stop now and finish my housework and I'll get Leigha to write a long, funny, post next time! :0
I'll remind her to tell you about our trip to the circus, her choice of academies in school next year, maybe a little dirt on Ian, and perhaps throw in a couple funny Dude stories. Oh, and I'll get her to tell about a really cool letter she got from someone in Baltimore (who knows my cousin in MD) and a concert that she is going to on Friday. She told her Dad who had invited her and he said,"that's a funny name for a girl". Poor Bryan.
Love to all, Mary XXOO
Saturday, April 11, 2009 7:37 PM CDT
Hello Everyone and Happy Easter. I tried to update the other day, and there had been some changes to the caringbridge site and I couldn't figure out how to log in!
Leigha and I just got home today from Duke. She appointments all day Friday. We were at clinic at 8:30 am for labs and check up. Her regular counts came back great and she saw Andre and then Dr. Prasad. Dr. Prasad asked her if she really had a transplant-and told her that she looked great! We are waiting on her immunology and a few other tests to come back. They filled out the paperwork for her to attend camp and Leigha was happy to hear that she has no restrictions this year. She can swim in the lake!! Both kids are already getting excited about Camp Happy Days. After that, we went to Lenox Baker for her MRI. Leigha slept through it, again. I don't know how she does it with all the clanking and banging. I had ear plugs in, and don't hear the best to begin with and definately could not fall asleep! Then we saw Dr. Patel, the orthopaedic doctor. The good news is that Leigha's knee pain is better, the not so good news is that the MRI had some changes that showed that her necrosis has spread. They are going to continue the treatment she is on and add some physical therapy. She said that hopefully since Leigha is off the steroids and has doubled the knee medication, it will begin to get better. She said that it's good that the necrosis has not spread to her hips and that her knee hasn't completely collapsed. Then we went and had lunch on Guest Rd at The Italian Pizzeria. I met the owners in Myrtle Beach a few months back and told them we'd come by next time we were in Durham and I'm glad we did, because it was awesome. Then we drove to Raleigh to her Endocrine appointment. Dr. Adkins raised her thyroid medication, and we need to follow up with her and the other drs. every 3 months to keep an eye on Leigha's knee. We went back to the hotel for a nap and then hit Barnes and Noble and Starbucks for awhile. We shopped and read while waiting for a bad thunderstorm to pass and then went to eat at Outback. Saturday we got up and went over to the Bone Marrow Unit to drop off gift bags we had made for the kids on the unit. Thank you so much to everyone who helped out with these. They turned out great and I'm sure the kids will love them. Well, I will be better about updating, now that I know how to access the page! We are going to color some eggs and watch a movie and are looking forward to church tomorrow and Easter!!!
Happy Easter and God Bless!
Sunday, December 21, 2008 3:53 PM CST
Yes, I know what you're thinking.
And No, you aren't dreaming.
I, Leigha Childress, am actually updating my very own caringbridge site.
The fact that mom has done all but threaten me has nothing to do with it.
Honestly.
I know that the last update was like in October or something.. Mom went on sort of like a caringbridge journal writing strike because she wanted me to do it..
I've been really busy though, and then I'd forget about it..
But now it's Christmas break, so I have some time to chill out and do what I want. School is good because you get to see friends, but I'm definitely glad that I have a break for a week or two. I'm still trying to comprehend that Christmas is so close, and still having some trouble. The weather feels like it's Springtime, I don't think I remember a day in December when its been 77 degrees, before this year. I think it might also be that I'm older, and I didn't start counting down the days until Christmas when October ended. Whatever the reason, Christmas is 4 days away, and it doesn't feel like it. Dad has to work on Christmas Eve this year, so he won't get home until 8AM Christmas morning, which means Ian won't get to wake everybody up at 3AM.
I had a good birthday. We finished the room above the garage, and it looks so cool. I had my party up there, and my friends came and we all just kind of hung out. It was nice having my birthday at home this year, instead of in the apartment in Durham. I told mom that next year is the dreaded sweet sixteen, year of the car... haha
I got my drivers permit last month. I'm feeling very lucky that I was born in '93 and not '94, because they've changed the law so if you turn 15 after January 1st, you can't get your license until you're 16. That really sucks for like, the majority of the people I know. But yea, driving mom's car isn't hard, and driving dad's truck is a little different but still not that hard. But driving mom's Mustang, which is stick shift,, I need some work on. Hah.
School has been going good, and high school is so much better than middle school. Plus It's been great seeing all my friends and getting to go places and do things I haven't been able to do in forever.
I've been doing great, mom might have mentioned that Duke pretty much told me I was normal last time I went. No restrictions or anything like that. I can eat what I want, do what I want, and getting sick isn't an automatic hospital trip. I've been sick a couple times, and I feel so normal haha. The only thing is my knee, which still hurts. I take that medicine for it, but I haven't seen much improvement. Its still hurts and I can't really run on it or anything. But I mean, if thats the only thing that I have to worry about, I'd say I'm doing pretty good.
Umm.... I can't really think of anything else.. I guess when you wait so long between updates it's hard to remember everything that happened. But anyway, even though this isn't super long, I hope that it will at least give people an idea of what I've been up to. Thanks for keeping up with me and checking this site.
Leigha
Sunday, October 26, 2008 11:03 PM CDT
Day 417
We just spent the most amazing week in Hilton Head. We learned of Hilton Head Heroes through Leigha's social worker at Duke, Marion. Leigha was not really able to go in the summer, and we were planning to go this winter sometime, but they had a cancelation and we left last Sunday. I would love Leigha to update, but I'm still waiting on her to update about school and Happy Days Family camp, so I'd better give you my version of the week, though she is so much more articulate.
There is no way that I can put into words how wonderful our trip was. It was so hard for us as a family to live apart when Leigha had her transplant and we had to live near the hospital for all of those months with the boys in SC and the girls in NC. As thankful as I was that she was doing so well, we still missed Bryan and Ian so much. Even though we have been back home for several months and things are getting back to "normal" I still get a panic feeling every now and then that we will have to leave our home and be separated again. Anyway, this week was all about our family spending time together. I want to tell you all about the organization who gave us such a wonderful week, but it is midnight and I have to work both jobs tomorrow (starting my day at 6am and getting off work at 3am, but I can't complain after having just had a whole week off!) If you want to know about Hilton Head Heroes and how wonderful they are, visit: http://www.hhheroes.com/
Anyway, last Sunday we arrived in Hilton Head and met a very nice couple named Carolyyne and Robert who gave us the keys to the beautiful Hilton Head Heroes House that is located in Sea Pines Resort. Also, a lady named Lisa had baked us some homemade scones and brought us some tea, which we enjoyed very much. The house was amazing. It had a pool, but though the weather was beautiful except for rain on Friday, but that was our "rest day". We unpacked and went to the grocery store and went to Coligny Plaza. We ate dinner at the most fantastic restaurants: Hudson's Seafood, Marley's, Smokehouse, Crazy Crab, Captain Woody's, Harbour Town Bakery, and the Quarterdeck. We went on a pontoon ride. Bryan and Ian took turns being Captain and Leigha and I chilled on the bow. Ian lost a sock overboard, but there was no other drama. We got to see by boat the lighthouse that we had climbed the previous day. We took a sunset dolphin cruise aboard the Vagabond, toured the docks and Benny Hudson's Seafood, played miniature golf, explored the island on our bicycles almost daily, found a nice skatepark. (Bryan or the kids may try to post a story about my amazing No Board Fakie/Gap, but don't listen to them, ok?) We played boardgames and watched Zohan, and had our family beach portrait done. We also enjoyed a place called Java Joes where we went for our coffee/internet fix. I know I am leaving out a bunch, but maybe Leigha can go into detail (hint, hint)
I have to get at least a minute's sleep before tomorrow morning comes, so I will post the pics later. Thanks for checking on us!
OOHHHH
I don't know if I ever explained about the air raid sirens. When we were in Durham 2 weeks ago for Leigha's 1 year studies, this very loud air raid siron went off in our hotel room at about 1 am. We were on the 9th floor which can be problematic for firefighters, so I had located the stairs when we first got there. Leigha was very calm as well and she and I grabbed my keys and purse and walked down all those flights of stairs. It was a little weird b/c nobody else was leaving. It turned out that there was an "accident" in the kitchen and the sprinklers/alarm had gone off. There was only 2 other people in the lobby. It was 2 young girls in their pjs like me and Leigha and they were trying to get the clerk to give them a room key b/c they had run out of their room in a hurry. The clerk was wanting to see id and the girls were trying to explain that they thought the hotel was on fire and they didn't take the time to get their room key or id. It kind of reminded me of the time Kevin locked Bryan out of the room in Vegas (This is a very long story, but very funny involving Bryan wrapped in a towel fresh out of the shower and Kevin would not acknowledge that he knew him, so Bryan had to walk to the courtesy phone (in a towel) and try to get the hotel employee to let him in his room and the employee kept insisting on seeing his ID. Anyway, funny story, and as far as me and Leigha's experience: All's well that ends well! Goodnight, All
Saturday, October 11, 2008 9:04 PM CDT
+401
Leigha is on the mend. Her antibiotic from Dr. Lindsey helped her sinus infection and Deb prescribed a new one b/c she still had an ear infection. Leigha and I drove to Durham Thursday night and after dinner we just relaxed at our room at Millenium. Her appointment on Friday couldn't have gone better. Her studies went very well and show that her heart, liver, kidneys, and lungs are in great shape. All the counts that came back so far have been great. The only part Leigha didn't care for was that Deb made her get a flu shot,and also told us to start getting Leigha's immunizations again! We saw Dr. Prasad and he and Deb said that Leigha is doing great!! We also ran into one of Leigha's favorite nurses from 5200, Whitney, who will be going to London to study interior design, which is very cool. We were at clinic from 10 am until about 3pm and then we went and checked into the Imperial Sheraton, which is an awesome hotel that Rick gave us a free 2 night pass to stay. After we settled in, we went and had dinner at Maggianos which is our favorite Durham restaurant. Then we walked around the Southpoint mall. Leigha was quite taken with the Apple Store and decided that she needs an Iphone for Christmas. Then we went to Barnes and Noble and back to the hotel. Today we slept in, went to lunch with my friend Charlie who lives here in Durham. We ate at Cheesecake Factory for the first time and it was awesome. We were disappointed that we didn't save room for cheesecake, but we vowed to go back later for dessert. After lunch, we tried to get on I40 to go to Raleigh to Vertical Urge and the Art Museum, but there was a some kind of freaky traffic jam. I had never seen traffic so bad, but we did some fancy driving and turned around and found a creative alternate route and finally made it to VU. Instead of going to the Art Museum, we went back to Southpoint and saw a (horrible) movie called Quarentine. Don't waste your money-it was truly awful. Then Leigha and I grabbed some dinner and got some scrumptious cheesecake and brought it back to our swanky hotel. And here we are, doing crosswords, watching tv, and basically having a great time together. I have the coolest daughter ever.
Oh, and Ian called. He shot 3 deer on his hunting trip so far. He had to go and skin them, so I'll get the details later, I'm sure. At least I know we'll have a freezer full of venison this winter!
I'll update more when we get home!!
Monday, October 6, 2008 4:29 PM CDT
+396
Leigha is sick. It started with a sore throat on Friday. The dr. said it was a little virus and that she did not have to be confined to the house unless she felt really bad. Well, starting Sunday she started feeling very bad. Today, I took her back to the local doc. and she has virus/sinus infection/ear infection. She says this is the worst she's ever felt and that my friends, is really saying something. Leigha NEVER complains and for her to say how bad she feels, it must be pretty bad. Please pray for a quick recovery and a good check up at Duke on Friday.
I am thankful for so many things and abhor negitivity, but things have been quite challenging around here lately. If it can break, it has. We have had to replace our air handler and entire duct work in our home due to some mold I found in the vents. Every homeowners nightmare, I know, but I had to get professionals in here quick to fix it, because that is nothing to mess around with, especially Leigha. The good news is that it was not in our walls, floor, etc. The bad news was that is cost $2000 that I don't have laying around right now. As much as I hate to, I am going to have to get a part time job. I love my new career, but I work more hours than I ever have and am spending more money to maintain my job and not making any. Excuse the pessimism-It will pass, I just need to vent. The important thing is my family's health, and everything else will work out.
Thanks for checking on us!
Friday, September 26, 2008 11:52 AM CDT
Day +386
Forgive me for not updating better. I guess in this case, no news is good news. Leigha has been going to school, skating rink (though her knee doesn't allow her to skate), having friends over, and going to friend's houses like a normal teenager. She adjusted to high school with no problem, which is pretty remarkable for anyone, especially someone who has missed the better part of 3 years of school. Her grades are excellent and I am so proud of her.
As each day passes, with life's normal day to day activities, I tend to dwell less and less on the "tough times" and focus on what's going on today. Leigha does not like to dwell on the past and is all about enjoying the day at hand. Sometimes, I will check another child's caringbridge page, or see the phone number in my cell for one of the moms I met at Duke and I will have mixed emotions. I know how very blessed we are to be home and for Leigha to be doing so well, but every now and then I'll just get a panicy feeling or think of some of the beautiful kids that did not make it, and I'll just have an overwheling sadness come over me. It's hard to put into words how you can be happy and not thinking about the hard times and then suddenly realize that you never know what life is going to deal you. All the more reason to enjoy every single day. My poor kids get kissed and hugged so much that it's amazing they are not bruised.
We go for Leigha's big check up next week. Pray for a good review. Her knee is hurting a little more than it was, but she is a lot more active at school and in general.
Work is going great. I have never worked so hard in all my life, but it's starting to come together. I got 2 listings last week and am working hard to get my name out there.
Ian is doing great at football. He played his first game this week, and we go as a family and watch all of his practices. When everyone is complaining about how inconvenient it is to be out there everyday for 2 hours, I'm thinking how nice it is to be home to be inconvenieced by it! I'll post new photos soon.
I still want Leigha to update about school and now Happy Days family camp which was awesome!
Hope everyone is doing well! Thanks for checking on us.
Thursday, September 4, 2008 6:33 AM CDT
******************Day+365***********************
Happy 54th Birthday, Leigha!!!!!! (or 1 year Anniversary) I can't believe that it's been one year since transplant. Thank you, God for watching out for Leigha and for her donor, who I think of everyday, but especially today.
Sunday, August 31, 2008 11:05 PM CDT
Day 360
I want to update about the event yesterday, but I may go into more detail later. I am tired and still recovering from yesterday. First, I want to thank everyove who helped, joined, attended, competed, prayed---EVERYONE involved. It was a huge success and we couldn't have done it without so much support. This will definately be an annual event and when I think of how much we accomplished in such a short amount of time, I get so excited when I think of what we can acomplish next year with a whole year to plan. My primary goal with the Lift For Life Drive was to promote awareness about cancer and the National Marrow Donor Program. Leigha's match was found on the registry, and although we have not met her donor, I do think of him everyday of my life when I am thanking God for letting my daughter be here with me. This man decided one day to join the national registry and I am so thankful that he did. I tried to let people know that it only takes a mouth swab to join and if you are a match and are chosen to be a donor, then the process, although important, is not as horrible as most people think it is. I won't go on and on, but please visit marrow.org to find out what it takes to be a donor.
Yesterday when I got to the event, I was saying a little prayer of thanks for the weather and my phone started ringing with people who were coming from the south, Charleston and Pawleys Island, and they were telling me how it was pouring rain. Then I noticed that the sky was rather ominous, but other than a few big fat raindrops briefly, we didn't have any rain. My next worry was that there were not going to be enough people to compete in the strongman. You have no idea how hard my husband, and others worked to make this thing happen. I told myself that whatever was meant to be would be, and it must have been meant to be. The competition was great. We had the perfect amount of competitors for our first competition. The MC, who is the President of the NAS and flew all the way from MO to help with our event, was awesome. One of the competitors (thank you) said he would pay the National Marrow Donor Program for every time Frank Domingoes (one of the competitors) lifted the car. Well by the time others matched that, and Frank lifted the car 30 times (!!!!!Yes I said he lifted a car 30 times!!!!), we had earned over $400 in about 1 minute! I will post exactly how much we raised (100 ill go toward future drives in SC) but I know it was at least $1000. I think we have gotten around 100 people to join the registry so far. I will try and post a picture before I go to sleep. The picture is of Brittany, a young lady who had a transplant a few years back, Willie Wessels, who had a bone marrow transplant as well, and Leigha!! I will update more about the event, and I would like to thank everyone again-we were so overwhelmed by all the support and the only thing I regret about the day is that I didn't have more time to spend with everyone who came out to support our wonderful cause!!! XXOO
Friday, August 29, 2008 10:17 AM CDT
Day +358
I have been very bad about updating this page. There has been a lot going on, and not much time to sit down and update. First I want to ask everyone to pray for our friend Kayla's family. Kayla earned her angel wings last week. It really hit us hard, because Sofia had just passed away. I can't imagine what these families are going through, and I know it upsets Leigha since she lived with these children for the 6 weeks that we were on the bone marrow unit at Duke. She has a hard time understanding why these children, and there have been so many that she knows personally, have to endure all of the illness, treatment, etc, and that's difficult enough, but not to be given a chance at life, is just difficult to explain to her or even to understand myself. I know that those family's prayed just as hard as I did, and I'm so thankful that Leigha is doing well, but my heart breaks for them.
I will get Leigha to update personally soon and let you know how she is enjoying school. She started high school this year, and so far things seem to be going well. Ian started middle school and hasn't gotten in trouble yet! :) He seems to like his teachers and has made some new friends. It's weird seeing girls (older girls, no less, flocking around my baby) And they text him constantly, even after he's gone to bed. I can still hear my parents telling me that girls shouldn't call boys, and you shouldn't call anybody after 9pm. :) If you want to what's going on in Leigha's social life, you'll need to get that from her, because I know better than to dislose her personal info w/o her permission!!
Work is going well, and I'm really enjoying my new real estate career. I've also been very, very busy planning the bone marrow drive and strongman competition. It's going to take place tomorrow at Myrtle Beach Mall/Callibakers. If anyone wants to join the National Marrow Donor Program registry and can't be at the event, let me know. If you live nearby, I have the kits here at home and have been trained to do them. I need to send them off on Tuesday. We have the NMDP reps coming tomorrow for the drive, different organizations on hand to talk about cancer awareness and help available, the North American Strongman competition, and music. I'm hoping it will be a big sucess.
Thanks for checking in on us!!
Sunday, August 17, 2008 9:21 PM CDT
Day +347
I ask you all to say a prayer for two families that we met in Durham when Leigha had her transplant.
Kayla is a beautiful, happy, remarkable young lady who had her transplant a week after Leigha's. She kind of reminds me of Leigha at that age, smart, and mature for her age, but fun. Leigha and me and Kayla and her Mom, Janice, were neighbors at the apartment we lived in for a few months after transplant. Kayla seemed to be doing great, but has relapsed with leukemia in her blood and well as other complications. She has gotten more chemo and radiation and was planning on a 2nd stem cell transplant soon, but news of another relapse has postponed that option. Please pray hard for this family who has endured more than most could even imagine. If you'd like to leave a comment on their guestbook, I'm sure they would like to know that there are people praying for Kayla. www.caringbridge.org/visit/kaylaroy
Also, please pray for Sofia's family. She is another little girl who was on 5200 when we were there. She earned her angel wings tonight after a long, courageous battle. When we were in the hospital, we would see Sofia and her Mom, Valeria taking long strolls in the hallway, doing arts and crafts and playing games. I was shocked to find out that she had her transplant in 2006 and they had been in Durham for a very long time. Sofia relapsed in her donor cells, and was seen at clinic for the past several months. You can't imagine what it's like to go through the transplant process, but I was in awe of this family, because no matter how many obstacles were thrown in front of them, they had a sense of inner peace and closeness of family that you don't see very often. I never saw Sofia's Mother without a smile on her face and without a kind word for someone. I still know that with all her strength and peace, she and her husband must be hurting very badly and missing Sofia, so please pray for them and if you get a chance to sign their guestbook it's: www.caringbridge.org/visit/sofiacastro
Thank you!! Love, Mary
Saturday, August 2, 2008 2:51 PM CDT
Day 332
Hello! We left for Raleigh on Thursday afternoon and checked into our hotel, which was very nice. We stayed at a Marrott and used our points that we had accumulated from the 3 months we stayed at a Marriott corporate apartment in Durham during transplant. I didn't know how that worked, but assumed that since we paid $75 per night to stay from October through January,we had probably earned enough points to never have to pay for a hotel again. Actually, we earned 18,000 points which equals 1 1/2 free stays! But we had a nice room that we didn't have to pay for on Thursday. We went to eat at Kanki which is a Japanese Steakhouse. We had gone to the one in Durham, so we thought we'd give this one a try. It was our server's first night, so he looked kind of nervous, and kept forgetting things, but he was so nervous and cute, we couldn't be mad. Ian was clocking the bandaid that he had on making sure it didn't fall into our salad. He has developed an expert eye for any chance of germ transfer! :) We have eaten at a lot of Japanese Steakhouses because it's one of the kids' favorite places, but we were impressed that our chef on Thursday was doing lots of fancy things that we had never seen before. Leigha and I said at the same time, "Wow, I wonder if he's ever..." and right at that minute the chef's spatula that he was flipping around went flying through the air and barely missed the lady at the next table. Then, he did this trail of oil on the grill, set the pile of shrimp on fire, and the trail ended at one of the guys at our table's plate. The chef grabbed a handful of fire, set the dude's plate on fire, and then waved his hand to put the fire in his hand out, I guess, but instead sparks went flying all over this pregnant lady. I was getting a little nervous, and rightly so, because when he juggled those big old salt and pepper shakers, pepper came flying out and went in my eye. It was burning, but all I could do is laugh. I could write this entire entry about our evening at the restaurant, but I'm sure you want to know other things!
Early Friday morning, we went to Dr. Atkins, the endocrine dr, and we were impressed with her. She has started Leigha's treatment for her necrosis of the knee. She will be taking oral medication weekly for 1-2 years. She has to take the med on an empty stomach and also sit or stand for at least 30 minutes b/c one of the side effects is horrible reflux/GI issues. As soon as that appointment was done, we drove to Durham for an entire day of tests, exams, etc. We went to clinic to get checked in. We were lucky to have Ian with us, because he caught the lady who was checking Leigha in drop the blood pressure cuff on the floor and called her on whether she was going to clean it or replace it before she used it again. I told you he has become very observant! Then Deb examined Leigha, she had her labs drawn, like a dozen tubes worth of blood. Then we went to the Bone Marrow unit to see Dr. Prasad since he was on call at the hospital, but wanted to see Leigha. We then went for her chest x-ray, then her thyroid sonogram, then a ct of her sinuses, then back to clinic to see Deb and go over results. I am happy to say that all the labs that have come back so far have been great. Her chest x-ray showed either an infection or from where she has not been breathing deeply, her avioli have kind of collapsed. She is taking antibiotics in case it's infection and has an inhaler to help her breathing. Her thyroid sonogram showed "disappearing nodules" on both sides which doens't seem to concern her doctor, and the sinus ct did not show infection. So all in all it was a pretty good check up for Leigha.
We will keep you posted as the other results come in and I am posting the following information about the bone marrow drive that we are having on August 30th. Thanks for checking in. XXOO
...........................................................
As most of you know, when Leigha needed her bone marrow transplant her brother, Bryan, nor I was a match. Her donor was found on the National Registry and this person helped to save her life. We are so thankful and feel so blessed and want to do something to help others. There are many people with life threatening diseases who are not fortunate enough to have a match. We are hosting a bone marrow drive on August 30th. We are having a Strongman Competition, and live music, so when you come to join the registry, there will be lots of entertainment. Anyone interested in participating in the Strongman Competition, contact me for details. There will be participants in all the regualar classes, and we will have a special class to see how our firemen measure up against each other!!! It will be a fun day, and more importantly, what we do will save lots of lives. The event will be held at Calibakers Firehouse and the Colonial Mall parking lot adjacent to Bass Pro Shop and Calibaker's. The contest starts at 11am.
If you want details on the Natioanal Marrow Donor Program, contact me or go to marrow. org.
This drive is primarily to get donors on the registry. But any person or company wanting to make a tax deductible donation should know that every penny will be used to fund future drives in South Carolina. There is no charge for the typing at our drive because of the generosity of others who have covered the expence. And there is never a charge if you are chosen to be a donor for a bone marrow recipient.
I do want to have t-shirts made, and I want to buy trophies for the contest, and I also have to have an insurance policy in place for the event. If anyone knows of a company, individual, or corprorate office who would like to help out with these expences or services, please let me know.
Please tell everyone you know about this event.
It will be a lot of fun and it's a great cause!!!
PS: Also looking for one or two more bands to help provide music.
Tuesday, July 29, 2008 9:50 PM CDT
+328
Hello everyone. Thanks for the thoughts and prayers and well wishes. Leigha took her heavy duty antibiotic, and is taking an expectorant as well. She still has that cough when she breathes deep, or laughs, etc, but it doesn't seem any worse. We've been going for a walk every night after dinner, to try and clear her lungs out. The good news or GREAT news is that we have managed to keep from being admitted in the hospital. Also, Leigha has gotten some good medical care here locally. I have been hesitant to take her to Conway Hospital in the past, especially the ER b/c of some previous experiences, but I have to say that her recent care there has met our high standards. Her pediatricians, Dr. Lindsey, and Dr. Sangtian have also taken great care of her and gone above and beyond their patient obligations. And knowing that all of you check this site, and pray for Leigha and send positive thoughts her way means more to us than you will ever know.
Bryan has had jury duty all this week. Or at least that's what he's telling me every morning when he dresses up and leaves the house. :) He hasn't gotten chosen yet, but has to show up each day this week. I have been busy with my new real estate career. If you know anyone who wants to buy or sell property, please let me know. We have all been gathering at the half pipe each night, and Bryan and Ian have been working together. Ian has mastered a few tricks that he couldn't do just a couple weeks ago. He is really an awesome skater. I don't know if I'm getting any better, but it doesn't seem like I fall as much, and when I do, it doesn't hurt as bad since I've lost some of that weight I'd put on. I have been strictly following my south beach diet and lost 10 lbs the first week!! I feel so much better already.
Speaking of clothes, as soon as Leigha gets better, we will be going school shopping. I can't believe that the summer is going by so fast! The plan is for Leigha to be able to go back to school. High school!! And the boy is going to start middle school. I am getting old!! At least I strive to be a cool old lady!! :)
Tomorrow and Thursday morning I have some work things to tie up, and on Thursday afternoon the kids and me are off to Raleigh. We have an early Friday appointment to see about getting Leigha's knee treatment started. Then we are going to Durham later in the day for check up, labs, x-rays, and other scans. Pray for some good results and we will update soon. XXOO
Friday, July 25, 2008 3:50 PM CDT
+324
We had Leigha's chest xray today and she has pneumonia, which is a serious thing for anyone, but we really need to keep an eye on her. She's having a 1 time/high dose antibiotic and hopefully that will help clear things up. We were all a little concerned with the persistant fevers, loss of appetite/energy, and other symptoms we don't like to see. Leigha asked if it was bad to feel releived that she "only" has pneumonia! Please keep my girl in your prayers for a quick recovery.
Thursday, July 24, 2008 7:42 PM CDT
Day +323
Today I had to go to Murrells Inlet first thing this morning to look at a house, and Bryan was at work. When I got home it was after noon and Leigha was still sleeping. That's not completely unusual, since she stays up so late, but when she did come downstairs, she told me that I should probably take her temp and sure enough, it was 100 degrees. She has been running a low-grade fever on and off since she came home from camp. OUr np at Duke said to take her to her local dr. and have an exam and get him to write for a ct of sinus and brain. He ordered a chest xray, but did not seem to think there was any reason to suspect a sinus infection. Bryan and I hate to go against what any of her drs. say, but usually question the xrays and other scans to make sure the benefit outweighs the risks. She has already had so much radiation. Anyway, we will have chest xray tomorrow to rule out silent pnuemonia(no thank, you) He did another strep test which came back negative. We plan on going to Raleigh next week for her appointment with the new endocrine dr. and them for check up, labs, and such in Durham. I hope she gets over these fevers soon. Please pray for my girl to get better and stay that way. Also, for Phil McElroy, who will be going to Duke next week for a leg injury he received in a fire engine accident awhile back. And of course, for everyone bravely fighting the beast.
I will update on bone marrow drive soon, but have a lot to say, and want to concentrate on my girl tonight.
Sunday, July 20, 2008 7:54 PM CDT
Day 319
I left Leigha's update as long as I did, b/c who knows when she will be inclined to update again personally! I know she wanted to update on her recent outings, but she is not feeling well. I guess she is paying for being so active and venturing outside of her "bubble" that we've lived in for so long. The Tuesday after Camp Happy Days found us at the ER getting cultures, labs, tests, and exam. Her fever shot up so quickly, we were scared to drive to Duke, but also scared to take her to Conway Hospital as we have had some unpleasant ER visits there. I must say that this time, Leigha had excellent care. Her ped. spoke to the Duke oncologist and got a plan of action. He then called the ER and explained Leigha's situation. When we arrived, the triage nurse knew to take her immediately to a room. All of the nurses, and the ER doc were great to Leigha. I called the hospital a few days later, to tell the customer service people how pleased we were, since I've never been shy about calling when we weren't pleased!! :) Anyway, Leigha took antibiotics and was feeling better w/i a couple days.
We went to Emerald Isle, NC this past Wednesday for 2 days and a night. We got to spend time with family we have not seen in over a year. It was really nice spending time with Gary and Carolyn, Tina and Kelly, and we got to meet Tina's new husband, CJ who got everyone's approval, even Ian, who is not always quick to give his approval! :) Gary and Carolyn had a huge tent set up on the beach, and it was nice and breezy, so Leigha was not miserable on the beach even though she couldn't swim in the ocean or pool. Bryan, CJ, Tina, and Ian built our annual sandcastle which I will post a picture of tonight on here. We took a nice walk on the beach Wednesday night, made some uptight dude mad by propelling water balloons with a slingshop, and went out to eat on Thursday before driving home. It was nice, but too quick!!
Saturday, we went to the West Ashley Outboard Motor Club for the annual Courageous Kidz family reunion. It was nice to see Flash and everyone. Leigha and Ian had fun on the many waterslides, which Leigha had gotten permission. Or the exact words from her NP were, "I guess it would be OK" They kids got to see some of their friends that they were missing from camp. It was much fun.
This afternoon, Leigha woke up with a fever. We have directions to go to the hospital if it reaches 102. So we aren't quite there yet, so we are just chillin at home and hoping that she can get better on her own.
I have much to tell you about a huge bone marrow drive we are hosting on August 30. I will tell you all about it next update. Pray for Leigha to feel better. Love, Mary
Tuesday, July 8, 2008 4:24 PM CDT
Day I'm really not sure..
So mom insisted that I get on here and give you guys an update. Said that everyone would want to hear of my camp experiences in my own words. So here I am. haha.
Well I just want to say that Camp was totally awesome. I'm starting to believe that it just gets better every year. I was there the full week, and as an extra bonus, I wasnt bald. So that was kind of cool.
So we got there Sunday and checked in and whatnot; Get this, I had to go through the lice check line. Yea I know right? So anyway, we all ate lunch outside, and kinda just met up with everybody, I mean, I hadn't seen these people in like a year, so I was happy to see them. Sunday was just kind of a chill day to settle in, and then that night we had like a party sorta. Many people that night got party-boyed curtousy of myself and T.A.
Monday we did... stuff. Honestly I was trying to update this day by day but it all kind of runs together and I don't really actually remember. I think we did something with team building where we had to build a boat out of cardboard and see whose team's could float the longest. I was on the gray team this year and uh it wasn't the best year for us haha. So yea, we lost. haha. Anyway, it had been kind of rainy, so I think it was Monday night that we all went out to the field at like 11pm and went mudsliding. Well I watched, as according to the "I won't do anything dangerous, dirty, germy, or stupid" promise I made mom. Cally didnt do it either because she can't run either (if you remember my knee died) so I didn't feel like as much as a punk as I would have had I been the only one. So after that (and showers) we went to bed,
Only to rise bright and early at 7:30am the next day. For those of you who arent aware, my schedule is more of a 'in bed by 3am, up at around noonish' kind of deal. So it was an adjustment that was not easily made. Also it was kind of weird actually eating breakfast, which I usually skip. I dined on fruit loops for the first time in a long time, and I must say it was a refreshing change from chicken wings and stirfry. I can't remember if Tuesday or Wednesday was pig day, but the theme was country, so they had a bunch of pig stuff and raced pigs and whatnot. I believe on this day the ongoing "That's what she said" competition started, in which we tried to see exactly how much we could incorporate that phrase into every day conversation. I'd just like to take a moment to say; It works with pretty much everything people. Anyway. They also had like this illusionist guy come, his name was Mike Super and it was pretty cool. He made up this word "Lavenous, and it doesn't have a meaning, so you can use it pretty much anywhere. He encouraged us all to go home and start saying it to everybody and see how long it took them to ask what the heck we were talking about. So then there was another party or something... And then the next day I think we did high ropes. I did that actually, it didnt hurt my knee too bad and I went through like the shorter one. I kinda just wanted to do the zip line. Plus there was like this little kid that would not go through for anything so she just like stood there for about half an hour and it didn't look like she was going anywhere anytime soon. That night we had like the big team building thing with the 4 stations and there was a lot of water sports so I kind of just was a spectator.
Thursday we went parasailing, which was awesome, and we also went tubing, which I couldn't do but it was still fun watching other people get thrown off, especially Al. Thursday was also the day of the prom, which I had planned on going to with T.A and Cally because a certain person decided it would be funny or something to wait until the day of to ask me but anyway, I ended up getting asked by Mack, and then T.A got asked by Josh, so we had to find a date for Cally, who ended up going with Jesse. We all had a really good time and it was really fun. For those of you who would like to see what I look like in a skirt (because I assure you, it doesn't happen often) you can go to my myspace and check out my pictures.
Anyway, after the prom we went back to the room and changed, and then we had the teen lockin. They played dodgeball for a while, and then, as is tradition, we tried to play capture the flag. And failed miserably. If we could just play without half the complicated rules and imaginary lines we might actually get through a game without someone getting hurt or chased by a dog or something, but whatever. The first game we played ended early because Beth, me and Cally were on the golf cart because we cant run so we went around the back and waited for the lights to go out and stole the flag while they werent looking. Nobody even realized it for a while, but when they did, there was animosity, and a lot of it. People take capture the flag a little serious in my opinion. So they played again (after everybody called us cheaters) and we kinda removed ourselves from the game to prevent further anger.
Friday was kind of a semi depressing day, because everybody starts kind of cleaning up, there's no team building, you start getting served leftovers for meals, and... the balloon ceremony. I understand that its good to let it all out and its a healing experience or whatever, but I still don't like crying. And I can guarantee you that if you are at the balloon ceremony you are going to cry. We did the Camp picture and they kind of trapped us because we were already all together so we did the balloon ceremony right after. So fastforward past the emotional crying like a baby and multiple hugs all around, to after when we went to go pick up our stuff at the program areas (anything we made in sewing, or pottery, arts and crafts, stuff like that) So we kind of just chilled out till lunch. Then we took a monster happy nappy, and slept through the entire derby car race, because nobody had made a derby car and everyone much rather would be sleeping.
Then I think we drove around aimlessly some more, and then went to dinner. Then we went to the talent show, where there was a bunch of awesome stuff, everybody was great, and afterwards we went and watched Fireworks. They were awesome too. Its really cool watching them right over the lake. So it had kind of been drizzly on and off and we were lucky that the fireworks werent rained out, but after we weren't sure whether we were going to get to do the trust walk, which is where the older kids go in the woods and the counselors scare them and stuff. So we finally ended up going and we waited in the field while they got ready for like,, 2 hours. So Finally we start walking and we get turned around twice and we finally get to the camp fire and we're just sitting there being bored and then we are just about to actually start and it starts pouring. I'm not just talking about a shower, or even moderate rain here, I'm talking about soak you to the bone, freezing, pouring, coming down in sheets kind of rain. The kind that you stand there for like 5 seconds and there's not an article of clothing on you that's remotely dry, and your shoes have so much water in them its... not amusing. So we start hurrying back out of the woods, but we're like really far so it took like 15 mins. to get back to the field and the paths are flooded and everybody is just miserable soaked and it's lightning and the thunder is sooo loud. So we finally get back to the field and this bolt of lightning hits like, in the field like literally 20ft. from us and it lights up the sky and you kind of see you life flash before your eyes or something dramatic like that, and we run under the porch of Dorm 4 (our dorm is on the whooole other side of campus...) and we have to stand there soaked for like another 20 mins. before it finally lets up enough for us to get back to the cabin. I made the decision that risking electricution is better than risking pneumonia, took a much needed shower, and collapsed on my bed.
Then Saturday I woke up, went to breakfast, which I skipped because I'd already eaten it yesterday.... and went back to the cabin to pack up. It's always really depressing leaving camp, you leave with what seems like so much more than a week of memories. Nothing can ever compare to just the profound impact the Happy Days has had on my life and who I am, and cancer sucks bigtime, but I actually consider myself lucky that I was fortunate enough to meet so many wonderful people, and that I get to be a part of such a great organization. It's a really big part of my life and I wouldn't trade the memories or the friends that I've made there for anything in the world.
So all in all, I had a wicked awesome time and I'm already looking forward to next year. A lot of people won't be back next year, your 16th year is your last, then you're too old and have to take a year off before you can come back next year to be a J.C. (Junior Counselor)
I have 2 more years, but when I get too old I will definitely be back as a counselor for the rest of my life.
I'm also looking forward to all the other fun events that Happy Days as well as Courageous Kidz has throughout the year, which I wasnt able to go to last year but I won't be missing them this year. So many great things to look forward to; every day I'm getting better and more healthy, I have so many fun things ahead of me, next year I'll be able to swim in the lake and do all the things I couldn't do this year. Life gets better everyday.
Sufficient update? Did I please?
haha Thanks again for all who sign the guestbook. Keep it up I love you guys.
Also you're cool if you check out the Camp '08 pics on my myspace. They're pretty much guaranteed to make you laugh.
Friday, July 4, 2008 2:05 PM CDT
Day +303
Happy Independence Day, Everyone. I thought I would give an update of our week and when Leigha gets home, I know she will give you a full update on camp.
Sunday, we went to our friends' daughter's 2nd birthday party. We went after we got home from taking the kids to camp. On Monday, Bryan worked his regualar 24 hour shift and I cleaned all day and then watched 2 movies in a row. I watched Georgia Rule which I knew that nobody else in the family would watch with me (maybe Leigha. but definately not Bryan, partly because it's a chick flick and he won't watch anything with Jane Fonda) and then I watched Order of the Pheonix. Tuesday was a great day. Bryan got home from work and we went to lunch and then ran a few errands. Then for dinner we went to Bonefish Grill and then to a comedy show. It was Manny Oliveira and he was hilarius. We had dinner alone, but met some friends at the Comedy Cabana and it was really fun. Wednesday, Bryan worked another 24 hour shift and I just chilled at the house. I couldn't find anything to clean, so I sat on the porch and read. Later, I went to Kim's house and hung out with her and Joanie. We were going to sit by the pool for awhile and then go out, but decided it was too nice just sitting by the pool, so that's what we did. Very relaxing. Yesterday, I went to work and Bryan was working one more day and we were going to go out tonight and see fireworks, but he started feeling bad at work and ended up having a fever. He had to leave b/c he couldn't treat patients or fight any fires feeling so bad and having a fever, but he didn't want to come home and make me sick and germ up the house right before Leigha and Ian come home, so he stayed at a friend's condo that is empty right now. I saw him for a minute last night after he had gone to the dr. and was about to fill his prescriptions. So, today it's just me and Dude chillin at the house . I will probably take Bryan some dinner later and maybe watch some more chick flicks tonight.
Ian has texted me twice throughout the week telling me that he is having lots of fun and that he loves me. :) He called me briefly yesterday to tell me that he had made a military derby car. That was pretty much the conversation: "I made a military derby car. Ok. Love you, gotta go!) Ha Ha I haven't heard a word from Leigha which means she is having fun and feeling well. I'll be sure that she gives you all a proper update of camp.
Monday we go to the specialist for her knee! Happy 4th to you all. Much love, Mary
Sunday, June 29, 2008 3:01 PM CDT
+298
I just got home from dropping the kids off at camp. I am so glad they got to go, but already miss them. We got to see a lot of familiar faces and that was nice. We got them unpacked and ate lunch and it started pouring rain (which it's supposed to do all week, I hear) I know Leigha especially is enjoying a little freedom, since she hasn't had any since last year! I'm sure she will update about all her adventures when she gets home. XXOO
Monday, June 23, 2008 3:41 PM CDT
Day 292
We just got back from a golf cart ride. We went to the marina and were going to walk around but it was too hot. So we rode to the Freeze and got ice cream which melted all over everyone on the way home! The kids can't wait for camp. I don't know what I will do with myself with the two of them gone for a whole week!! Thanks for checking on us!!
Sunday, June 22, 2008 4:31 PM CDT
Day +291
Today was wonderful. I am still thankful every minute that Leigha's results were good at Duke. Bryan has been working a lot of overtime (to make up for my slacker ways!!) He has worked the last 48 hours, Friday and Saturday, so today when he got home, we all went to Oh Clay Cafe, the pottery place. Leigha and I finished our pottery that we started before we went to Duke last year and Bryan and Ian did pottery, too. The kids are excited about camp and have already started packing. I have been busy training at my new office, Century 21 Broadhurst. I am so excited about my new career there. Thanks for all the prayers. Love, Mary XXOO
Friday, June 20, 2008 2:37 PM CDT
Day 289
I updated this morning, but don't know what happened to it!
Leigha's thyroid test came back normal, so the other lab result must have been an error. Her chimerism came back at 98% donor cells which is the best it can be and her immunology was in the 130's last time, and in the 250's this time. 300 is normal, but she will be able to have more freedoms. (like going to camp!!!) I will update more later.
Saturday, June 14, 2008 12:01 AM CDT
Day 283
Hello, Everyone. We left for Durham on Wednesday. We got there in time to eat at our favorite Japanese restaurant there, and then went back to the hotel and watched Drillbit Taylor with the guys. Leigha and I had seen it, but Bryan and Ian had not. Thursday, we got up at were at the clinic at 9am for Leigha's labs and vitals. Then, she had her echo, then her pulmonary function test, which is always brutal! Then she had her chest x-ray and MRI of both knees. She had never had an MRI before and we didn't know it would take so long. She did very well-I went in with her and the tech got her positioned and gave us both earplugs. I thought, hmm, earplugs, I wonder what that's all about, but I put the earplugs in and thought the machine would take a quick scan of her knees. Well, what proceeded next was all sorts of clanking and banging, mixed with what sounded like birds chirping, and just when I thought it was over, the timer would start over for another 5 minutes of a different pitch and tone. Finally the tech came back and I thought it was over, but Leigha had to do the same thing for the other knee. We were in there for an hour and I think that MRIs would be an effective form of torture or brainwashing, but guess who slept through the entire 2nd knee and didn't complain a bit? That's my girl!! After the MRI, we hurried out to the car and Bryan and Ian were waiting and wondering what had taken us so long. We drove to Raleigh to our favorite skatepark/shop, (Vertical Urge rocks) and got there just in time for the Emerica demo. It was way too crowded for Leigha to go in, but she and I sat in the car and Bryan took Ian inside. Leigha and I got to watch our own semi-private demo outside, and the very cool dudes at Vertical Urge hooked her up with some shirts AND a deck signed by the entire team. These are the same guys that get her autographs at all the demos, and when we were living in isolation in Durham, would let Leigha shop after hours because she couldn't be around people! After the demo, Ian skated awhile, and Leigha admired some of the skaters, and perhaps I did as well, and then we went to Carrabas for dinner and afterwards went back to the hotel. Ian and I went outside to skate and Ian landed a really cool trick and tried another and hit a rut and peeled off a great deal of his elbow. Both elbows were already skinned, as well as both knees, but this new injury was the most impressive yet. I had to get the medical kit out of my trunk and bandage him up. He has left a trail of DNA from here to NC, but that hasn't slowed him down. Anyway, after I bandaged him he skated some more and then we watched Semi Pro and called it a night. On Friday, we went for Leigha's appointment with Dr. Prasad. Deb was working another clinic, so Andre was her np. Early in her treatment, we had requested that we have Andre whenever Deb couldn't be there and they have honored that request ever since. I can't tell you how thankful we are that we decided to go to Duke for Leigha's transplant. Not only from the medical aspect (which is reason enough) but everyone from the valet to the nurses, to the ladies that check us in, they all go out of their way to make Leigha happy and comfortable, and that makes such a difference. Well, all the labs results that had come back were fine. We are still waiting on the chimerism and the immunology. That will decide if Leigha will be able to go to camp and other places that she is wanting to go this summer. I am praying hard for good results-it will be horrible if she can't go to camp, but like Dr. Prasad said, she has done so well and made such incredible progress, that it would not be worth going somewhere and causing a huge setback because her immune system wasn't ready. But.....we will know by next Friday. The only other thing that was off was her thyroid results. Dr. P said that he needed to run the test again and that did not make Leigha happy, but he needed to see if it was a lab error or truly a thyroid issue, which is not uncommon in transplant people, and also it runs in families and I have the same thing. So, Leigha had more blood drawn, and we headed to the orthopaedic dr to go over the MRI results. Dr. Prasad had already told us that it is natural associate bone pain with relapse, but he had no reason to think that her leg pain was any indication of that. We finally got to see the orth. dr. and she told us that Leigha has necrosis of the knee bone caused by steroids. One pack of steroids can cause this, and Leigha has been on massive doses on and off for 4 1/2 years. The good news is that we caught it early, and that it is not "relapse pain", but the bad news is that the dr. has nothing she can do for Leigha as far as therapy or surgery. There is no way to reverse the damage and it usually gets worse. She recomended bisphoshrate therapy, but Leigha will have to go to an endocrinologist for the therapy. She said that she has seen good results with this therapy, and Dr. Prasad agreed, so that's what we are going to do! I wish that Leigha could just be done with all this and go back to living a normal teenage life, but I am also very thankful that she is doing as well as she is. I'm glad to be home with my family and if anyone is still reading this ridiculously long entry: Happy Father's Day to all the Dads out there. Hug your kids!!
Friday, June 6, 2008 3:21 PM CDT
Day +275
I haven't updated in awhile. Everything has been going well! We are hoping for some good results at the 9 month studies next week. Ideally, Leigha's immunology results will be high enough to allow her to go out in public and allow her more freedom without the worry that if she catches some kind of virus or something, she won't be able to fight it like you or me. She will have the usual tests and labs, but her team has added an MRI of both knees and an appointment with an orthopaedic dr. She is still having the knee pain, but says that it is no worse unless she is on her feet for long periods of time, or if she goes up and down the stairs. Dr. Prasad seems to think it is her ligaments.
I finally took my real estate exam on Tuesday. I had taken the class test, but not the state exam. I was a little concerned about waiting so long, especially since I didn't study it after I passed the first test! But it was easier than the classroom test. I found a great company and I started training on Wednesday, and am just waiting until the paperwork gets done so I can get down to business!
Yesterday was Ian's awards/graduation from elementary school. It was semi-formal and he was stylin in a black Volcom suit. He got A's and B's all year, which he has done every year that he's been in school so far. I don't know how, because yesterday when he brought his books home, I was looking through all his journals and books. His social studies book had drawings on every page. Some were comic book style and all were quite good (mostly military drawings of soldiers and battles) but there was no social studies work in the whole book. Then I looked at his writing journal. Leigha would write stories and themes about her everyday life or certain topics and they would be 3-4 pages long sometimes. Ian's journal was quite different than that, but Bryan and I were rolling on the floor laughing at some of his work. Here's an example:
"Ectoplasm rocks it is so toxic and good I do not eat it" That was his exact punctuation. Here is his haiku: Ice, It's freaking cold I ran through it bare-foot once. I just about died. And here was his wish list: For no one to get sick. One day be a pro skater. be santa claus. Because lots more people would be happier and have better lives. Anyway, it was entertaining to read! I can't believe my baby will be in middle school next year.
Leigha had some friends drop by today and bring her a yearbook that was signed by lots of people from school. It was really nice, and she got to hang out with a few of her friends for awhile. Which was nice because a few hours before, all the middle school kids were outside (we live right across the street from the school) Leigha walked over to the fence and was saying hello to some of her friends who were sitting beside the fence. A few minutes later she came home and said that one of the teachers had told her to leave. She said she was polite and not a bit rude to him and told him that she was enrolled at that school and tried to explain who she was and her situation, but everytime she tried to speak he would say, "Go!" I felt bad for her and I think that is just an example that we should be sensitive to people's feelings. Here is a kid that has missed the entire last year of middle school who is happy just to stand there for the last 30 minutes of school and talk over the fence to her friends, and the teacher who won't even listen to her explanation. I could gone over and made a big deal over it but she didn't want me to.
Well, Leigha wants to get on the computer, so I will update more later. Thanks for checking on us!!
Tuesday, May 27, 2008 6:52 PM CDT
Day +266
Leigha and I just got back yesterday from an unscheduled trip to Duke. We had just spent a wonderful weekend out of town and had a great family weekend. We were guests at Beulah Land Plantation. The Richardson family holds camp Debbie Lou there every July for families with children who have cancer. We had the pleasure of going to camp a couple years ago and had the best family time we had ever enjoyed. This weekend was just as nice. We were invited to enjoy their lodge all by ourselves which is in a very tranquil and rural part of South Carolina. It is a very beautiful place with lots of activities to enjoy like horses, go-carts, swimming pool, bumper boats, archery, fishing, a chapel, arts and crafts, and games, just to name some. They even had a cook come and prepare wonderful meals for us, which spoiled me rotten!! We would enjoy the many activities, relax a little, do some more stuff, and at night after dinner we would play games together or do crafts, or just sit around the beautiful lodge. Leigha and Ian enjoyed driving the golf cart (which goes much faster than ours) all over the huge farm. And there were no neighbors as far as you could see, so nobody called the cops on Leigha!! We had the time of our life. We came home and Leigha had a little headache and we ordered Outback to bring back to the house, since I didn't have any groceries, and I was spoiled from not having to cook all weekend. Her headache got worse and she felt sick to her stomach. Later that night she got sick. I am supposed to give her a stress dose of steroid when she is sick, but she got her central line out and she didn't feel comfortable with me or anyone else giving her the shot in her muscle. We called Dr. Lindsey to meet us at the hospital to have a look at her and give the shot, but when I called him (at 1 am) he told me that he was out of the country. So, we decided to go to Duke. Bryan stayed with Ian and was going to meet us there the next day. We got there after 4am and went to the Bone Marrow floor of the hospital and Leigha was seen by the fellow on call. She got her shot and some fluids, and we went to the Bone Marrow clinic as soon as they opened the next morning. Leigha's doctor and np said that they thought that the sun she got over the weekend (though she was wearing plenty of sunscreen) as well as the fact that she was somewhat dehydrated had made her feel bad. Then, she may have had a little stomach virus, or else the food we ordered at the restaurant might not have agreed with her. They did blood cultures, but don't expect an infection. Anyway, they told us we would go home, so I took a 2 hour nap and we made it home yesterday afternoon. She is feeling better and has held down crackers, jello, and lots of gingerale. I'll update soon. Thanks for checking on us!!
Tuesday, May 20, 2008 11:21 AM CDT
Day +259
Thank you, everyone, for checking on Leigha and also for the guestbook entries and emails. It's nice to know that so many people are there for us. Things are about the same around here. Leigha's knee is still hurting when she moves around, but no worse. Unless things change, we will just keep our appointment at Duke for her 9 month studies, but they have added an MRI of both knees and an appointment with an orthopedic dr, as well as her regular studies which include an echo, a pulmonary funtion, chest x-ray, and her many labs. And of course Dr. Prasad will see Leigha as well.
We had kind of slacked off on exercise since her knee has been hurting, but since it hurts anyway, we thought maybe we should continue to exercise, so we went on 2 long walks yesterday. We tried to take Dude on the evening walk, but he lost his mind when one of Leigha's friends stopped to talk to us on his bike. He dropped to the ground (Dude, not Leigha's friend) and started rolling around and trying to bite the leash into pieces. He stepped on my foot and I thought he had broken it. So,, I see some obedience training in the not so distant future.
We have been just hanging around the house. Leigha, Ian, and I did go see a movie Friday afternoon. We were the only people in the theater, until right as the movie started, and 3 older ladies came in right at the last minute. We were sitting in the very back and they sat in the front, but just by their entrance we had our worries. You can tell by the way people enter the theater if they are going to be loud or not, you know? These ladies were very talkative, plopped down during the credits, and we could hear their conversation from the very back of the theater. They all propped their feet up on the chairs in front of them, and one of them was knitting, talking, and watching the credits. Leigha turned to me and whispered that they looked like the type that would cackle at anything remotely funny. Anyway, once they movie started, they were suprisingly well behaved!! We saw Baby Momma, by the way, which wasn't the best movie we had ever seen, but it had a few funny parts (mostly the one's they show on the trailor) and it was very predictable, but for people who don't get out much, it was fine!!
Bryan worked Friday, and Ian went skating, so it was just me and Leigha for the evening. We watched some tv-Netflix has been a great investment for us. We are all caught up on the new movies, have watched a lot of classics, and have now moved on to 80's mini series. We are finishing up V (the one from '82 where the aliens come to Earth to eat everyone) and are going to start Charlies Angels (the tv series) next. Any recomendations are welcome-as you can see, this is a big part of our entertainment!!
On Saturday, Ian went over to a friends house, and our friend, Jeff, loaned us his motorcycle, since ours is out of commission for the 3rd bike week in a row. I knew that Leigha was getting very bored with having to stay around the house so much, so I told Bryan to take her for a nice long ride. She got her helmet, and sunscreen, and they took off for a 2-3 hour ride. I think they both had a good time!
On Sunday, I had what can only be classified as a small emotional breakdown. I can honestly say that I am a pretty positive person, and I focus on the good stuff and try not to worry about the things that I can't control. I do tear up during sad movies or books, but haven't really had a "real cry" in about a year. Well, it just crept up on me and the next thing I knew, I was in my room crying into my pillows until my eyes were all swollen, I couldn't breathe, and I literally felt like I was going to throw up. My wonderful husband came in there and just let me get it all out of my system. He didn't try to talk to me, or tell me to stop, he just rubbed my back. And when I stopped, he told me to get dressed, and then he and I went for a nice ride on the bike. On the way home, we stopped at Rascals and had a nice competitive bowling series. Then I came home and got dressed again, for a spa party that my friends were having that night. I had almost talked myself out of going, because I feel like I should be at home, but it was really nice to get out, and see people that I haven't seen since I worked at 2001. I even bought some miracle beauty products, so when you see me next time, you'll know why I'm looking so good!! :)
Well, we will keep you posted, and maybe even Leigha will update one of these days. Her school wants her to take the PACT test at home, and we had not been planning on it. I thought it was up to the parent/student, but we are being told that she has to take it. I am going to look into it, but it may have something to do with the fact that Leigha always scores almost as high as you can, and it makes the school look good! She is worried that she may not do as well since she has missed so much time, but anyway...
Hope everyone has a great week!! XXOO
Tuesday, May 13, 2008 9:24 PM CDT
Day +252
Leigha's knee has been hurting. We didn't want to make a big deal of it, but bone/joint pain tends to make us very nervous. It has hurt since last Friday night, so we had it looked at today. Dr. Lindsey and everyone in the office took extra good care of her, and did labs as well. I was so thankful that all of her counts looked wonderful. They were actually normal; like normal person normal, not even bone marrow transplant normal :) We then went over to Conway Hospital and had x-rays done. They were very good to us there, too. From check-in, to getting the x-rays, and making us discs-also, everyone was very aware of making Leigha comfortable and making sure everything was wiped down extra good in her room. I have had my issues with the whole ER experience there, but have to say that Leigha has gotten excellent care with the outpatient lab and radiology dept. Anyway, Leigha's np from Duke says that steroid use can cause knee pain, that relapse is not the only thing that causes your knees to hurt, and her labs were very reassuring. It's just very difficult not to worry about every single pain, etc. Please continue to pray for Leigha to keep doing so well and soon be able to get out there and be a normal teenager!!
It was a strange day otherwise, though. We managed to get some laughs in, but it was one of those days that you just think, "What have I done?" or " You've got to be kidding!"
I had some adventures with Dude, trying to get some flea treatment and then actually treating him with it. Then walking him (I call it that, but it's the other way around) For those of you who don't know, Dude is a 200 lb. mastiff. We came home from our walk and there was this little weiner dog in our front yard. He's been running around loose for the past couple days. We've tried to get the name off his collar, but he runs away, into the street. Anyway, he was barking at Dude in Dude's own yard, and then to add insult to injury, he had the nerve to pee on Dude's trees, right in front of Dude. Well, Dude is not aggressive, but I was truly worried that he would break the leash in two and eat that little dog in 1 big bite! Theeeen, Ian comes home from skating at his usual spots around the neighborhood and wants to skate his ramp. Well, normally we let Dude inside b/c he likes to run in front of Ian as he is dropping in on the 6ft. high ramp. I told Ian that Dude had to stay out until I knew the flea stuff had worked, b/c I didn't want them in the house. I haven't seen any outside either, but he was scratching and I didn't want to take any chances. Well Ian convinced me that Dude was now scared of the skateboard and Ian had "trained" him not to chase him. Fast forward to the part where Ian yells for me to come outside and to make a long story short, Dude wasn't as trained as Ian thought. He was freaked out by the dog, b/c when Dude gets nervous/excited he foams at the mouth like Cujo. Then several funny things happened that I can't write about or Ian would get mad. At this point, Ian is in the shower, and I am going to Dominos to pick up pizzas, b/c of a dishwasher problem that I had 2 days ago turned into a busted hose problem yesterday and Bryan can't fix it until...you guessed it: TOMORROW (his favorite day to fix things around the house!!) Actually, the part won't come in until then, but back to the story, I back out of the driveway and BAMMMMMMMMMMMMMM-I thought I hit someone on a bike or something, but..my son had pulled the motorcycle trailer behind my car to grind and ollie over and I smashed right into it. There's lots more, like the termite scare, the food mix-up, the neighbor calling the police on us again after calling about my kids riding their golf cart, finding out that we are about to meet our $million max on Leigha's insurance, getting a crazy high bill from a repair man that did absolutely nothing, and other stuff I simply will have to tell you later. But guess what, it was still a wonderful day and we sat around the table laughing about most of it at dinner tonight. Oh, one more thing: Our friends Jeff and Anita had a beautiful baby girl who I got to meet on Sunday. She is just perfect!! I almost cried looking at her, so I wonder what that means???? Well, I'm off of here to see what other trouble I can make before bedtime!! Love yall!!
Sunday, May 11, 2008 12:29 AM CDT
Day +250
I slept in today and woke up to a wonderful breakfast and freshly brewed coffee made by my wonderful daughter, Leigha. Bryan came home from work and Mother's Day shopping (at Lowes!!) Then Ian woke up and we all lounged around while I ate breakfast in bed. Then we walked out on the front porch to look at my presents (2 plants and 2 birdfeeders!!) I have to say that my real Mother's Day present is having these 2 wonderful, beautiful people for my children. I've always known I was blessed and lucky to be their Mom, but after all we have been through I appreciate them even more. They are truly a gift to me and I love them more than words can say. I am so fortunate to have my family with me and I am just going to enjoy their company today with no distractions. I used to get sad on this day, because it made me miss my mother, but I know she wouldn't want that, and life is too short not to be thankful for what we have today!! Happy Mother's Day to all the great Mom's out there, and if you are lucky enough to have your Mom or kids with you, give them a big hug and enjoy them!!!
Wednesday, May 7, 2008 5:05 PM CDT
+246
I have been meaning to update, but am just now getting around to it. Leigha and I went to Durham last Wednesday. We went to her pre-op appointment and had her labs done. Deb, her np, stopped by to see her and she had a great check-up. We went to our hotel to check in afterwards. We were going to try and save money by staying at a different place, but that didn't work out. We were done with Leigha's appointments by 3pm, so our plan was to check in to the hotel, do our obsessive cleaning and disinfecting of the room, and then go to dinner at Kanki. (Japanese steakhouse) We had permission to actually eat inside, since we would be getting there when they first opened and it would not be crowded. Well, I walked into the hotel lobby, and a red flag went up when I noticed that I didn't need to open a door. The entire front of the building was missing. They were replacing the front doors and when I stepped in (around and over the workers and materials, I noticed that the ceiling was missing and it was quite dusty. Luckily, Leigha was in the car. I told the person at the front desk that my daughter could not be around such extensive construction, and explained Leigha's medical condition briefly. She said she understood and would change our room in the main part of the hotel, to a "very nice" room in a separate building behind the main hotel. When we got there, we brought all of our things upstairs, and although the room was very large and on the surface pretty clean, it smelled very musty and mildewy. I didn't want to be unreasonably critical, and thought that maybe I was just used to newer, more modern places, and it was an "old smell". I got out the disinfectant and went to town, and after I cleaned the room, I realized that my eyes were watering, not from the cleaner, but from the musty smell, so I called the front desk and asked by any chance, had the room had water/moisture damage, and was told "why yes, last week all the carpet had been flooded". So I explained that this was not acceptable, expecially for Leigha, and she said she didn't know what she was thinking, that if I came back to the lobby she would give me another room that was suitable. She when we are in our third room, we decided that it did not smell as bad, and we didn't see any evidence of flooding. So....I cleaned again. Then I went over to the AC to turn it up, and saw black mold growing all over the wall!! I knew that I needed to get Leigha out of there, so we ended up moving to the hotel where we usually stay, and decided that we would not try and cut corners on our lodging again. We had a wonderful dinner at Kanki, and a nice evening nap, and then we watched some really bratty kids on that Super Nanny show that we had never seen before. Leigha had to be at the hospital at 7 am for her surgery. (the procedure was actually at 9, but you have to be there early) Everyone was very kind and professional, and Leigha did great. She wasn't even that groggy from anesthesia, so we were out of there by 10:15. Dr. Prasad was not working clinic, but let us come by his office so he could take a look at her, and we were back on the road, headed home!! Other than being a little sore (Leigha couldn't talk Deb into anything stonger than Tylonal-though she tried!!:) she didn't have any problems, Thank God, and she is so glad to be able to shower and not worry about getting her central line wet.
We would have liked to done the Walk of Heros (honoring all the kids who had transplants this past year)which raises money for Duke Family Support, which helped us in so many ways while we were there. But we knew it was quite a big deal and would be quite crowded, so I decided to wait until next year.
Thank you everyone for all the cards, letters, and packages you have been sending Leigha. It has really cheered her up. Although she can't be around large crowds (school, church, busy mall, etc) we did get permission to go to restaurants (when they aren't busy) Our whole family went for a walk on the beach Monday, then to Carraba's, then to Barnes and Noble. It was the first time since August that we were able to do something like that together.
If all goes well, Leigha doesn't have to go back to Durham until her 9 month studies in June!!! Please pray for her continued good health. Love from all of us!!!
Tuesday, April 29, 2008 6:32 PM CDT
Day +238
Thank you for all the encouraging messages on Leigha's guestbook and for the cards and letters. It has really cheered her up. We leave early in the morning to go to Durham. She has her pre-op appointment tomorrow and labs drawn. Then on Thursday, she will have her surgery to get her central line out and then see Dr. Prasad. She has been feeling well and we have been trying to keep busy with things that we are allowed to do. We will update when we get home on Friday!
Friday, April 18, 2008 11:45 AM CDT
Day +227
We got the news from the immunology just now and it was not what we wanted to hear. The numbers had gone down instead of up. I knew when I answered the phone and it was the dr, instead of Leigha's np, that it probably wasn't great news. He said that he would consider the change in numbers a fluctuation, and that he will re-test in a couple months, probably at her 9 month studies. He said the thing to remember is that Leigha has done well coming off of her meds, but she is still early in the transplant stage. I think since she has done so well, that everyone, including the dr. expected her numbers to be higher. I know we need to focus on all the things that are going well, but this is devestating to Leigha because she was so looking forward to going back to school this year and now that is not an option. She has listened to and followed all the drs. instructions and precautions, but I think that these past couple days, waiting for permission that we just assumed would be coming, has been the most difficult for her. I know we are still very lucky, but my heart is breaking for Leigha, who has been through so much and deserves to just be a normal teenager. Please pray for Leigha, that this transplant allows her to soon be able to get out there in the world where she wants to be.
Monday, April 14, 2008 3:43 PM CDT
Day +223
Leigha and I went to Durham Friday for her labs and check up and she had a great report. All of her labs were wonderful: platelets 205, WBC 4.3 Hem 10.4. We are waiting on the results of her immunology and if the #'s are above 200 she will be allowed out of "isolation". She is down to 1 cyclosporine each day and next Friday, we hope to be finished with it forever. On Friday, they also stopped her blood pressure med, and her magnesium. She still probably takes a lot of medicine by most people's standards, but it's a lot less than she's been taking. Dr. Prasad, who is known to be one of the most cautious of the peds bone marrow team, said that he felt fine with Leigha returning to school next week if her immunology is 200+. It is very unusual for him to allow this to happen before a year post transplant. When I told him that I knew how blessed we were that Leigha had done so well, he said that in 20+ years of medical experience you just never can tell who will do well with the transplant and who won't. He said in so many words that certain people have things going on that may indicate that they will be prone to certain complications, but some patients develop complications that the dr. just didn't expect. He told us before transplant that transplant is a very dangerous procedure and that they could not guarantee that Leigha would do well. But, he told us Friday, that Leigha had far surpassed their expectations. I was so thankful for such a good check-up and ask that everyone continues to keep her in their prayers. I am so thankful that I got to bring my child home, and so sad for all the mothers we met at Duke who were not so lucky.
Leigha has taken an interest in cooking. She cooks dinner sometimes, and her specialty is desserts from scratch. She has made homemade strawberry shortcake, homemade chocolate cheese cake, among others. She says that she cooks them for Bryan and Ian, but it's usually so good, I end up having to try a piece or 3, so it's ruining my diet efforts.
Well, hopefully in one week's time, Leigha will be able to get out of the house and go back to school. As much as I am ready to be "normal" again, I don't know what I am going to do without her. We have spent every minute together for over a year, and she has not been able to go anywhere that there are other people besides the clinic, and she has worn a mask. And now I am supposed to just throw her back into the world-I am going to be a nervous wreck.
Thank you all for checking in on Leigha and signing her guestbook. I wanted her to update, but she is sitting here in the kitchen working on her research paper (on Kurt Cobain) that is due soon!
XXOO
Monday, April 7, 2008 12:36 AM CDT
Day + 216
I woke up today just feeling very thankful for Leigha's miracle. I just want to thank everyone for their thoughts and prayers and ask that you please continue to pray for her health. We go to Duke this Friday for pre-op appointment, labs, check up, and IVIG. Her IgG levels were on the low end of normal, and since she is planning to have her central line taken out on May 1st and possibly going back to school next month (if other levels increase and she does not get gvh) they want to give her a dose of IgG which helps to protect against infection. I am so thankful that she is doing so well, and we could not have gotten through this without the support we received from our friends and family, and even strangers who I will never be able to thank! I would not be surprised if Leigha doesn't need blood-I'm hoping I'm wrong, but I just have a feeling. We are not due to get local labs this week, and I have not e-mailed Leigha's np, because Leigha does not have any other signs of low hemoglobin except being a little "off color". I'm hoping this is my over active imagination, because she feels fine.
Thanks to all who continue to check on us, and please take a minute to sign Leigha's guestbook. I will try and get a personal update for you next time. It doesn't hurt for you guys to give her some encouragement (or guilt) to update!!
Love, Mary
Friday, March 28, 2008 8:01 PM CDT
Day +206
Last night I took my real estate class test. Only 2 people passed, just like the last class, and the 2 people were Kim and me! Now, I have to make up the class that I missed when I was in NC with Leigha, and take my state exam. Then I will be in business!!
We got off to a little late start this morning. We usually leave at 5:30 am so we can get there at 9am, but today we didn't leave until 10am. Traffic was really heavy on 501 and 95. Then some maniac came tearing off of the exit ramp without stopping and if I hadn't run off the road, he would have crashed right into Leigha's side of the car. But, eventually we made it safely to Duke, and got checked in and put in a room immediately. Today was Leigha's last scheduled pentamadine (breathing treatment to prevent pnuemonia) Leigha also got permission to cut back some of her meds and completely discontinue some of them. Her next appointment is not for 2 weeks, and we DON'T have to get local labs done at all! She has a pre-op appointment scheduled to get her central line out and if her immunology (drawn on April 11th) is over 200, she will get to go back to school! We were warned that anytime during the cutting back of cyclosporine, she could get gvh and that would delay things, but so far, so good! Dr. Prasad seemed truly impressed with how well she looks and how well she is doing. It was so good to see Leigha joking around with her nurses and dr. after all that time of feeling too sick to be herself. Today, Wendy was giving her a hard time and telling her to take deeper breaths during her p-tam treatment. She even held Leigha's nose to make sure that she was not "cheating". (Leigha doesn't cheat-Wendy just likes giving her a hard time!) Anyway, at that moment Dr. Prasad walked in and asked Leigha how she was feeling and she replied, "tachacardic". Then he gave her high five and punched her in the arm. Leigha then said that she could tell that he thinks she's doing better, cuz he used to pat her lightly on the back, then last time he thumped her on back, and now he is punching her in the arm. Labs were great and all in all, it was a wonderful checkup.
We got home and watched Ian skate on his new half pipe, which is all but finished and is awesome. He has had his first wipe out and it involved Ian dropping in on the 6ft. ramp and just when he built up some speed, Dude thought it would be cool to run right out in front of him and try to grab his leg. Needless to say, that didn't turn out well, but thank goodness for helmets. I really wanted to post his wipe-out picture on myspace with the others, but wasn't liking it. (You couldn't see my head swivel, finger snap, but my kids will know what I'm talking about!)
Well, time to do some meds and Leigha's central line. Thanks for checking on us! Oh, I forgot to say that Leigha has lost 4 pounds since her last appointment. A few people seem concerned about her diet, but she gained quite a bit of weight with the high dose/long term steroids when she had the graft vs. host thing in Durham. The doctor told her not to worry about the weight gain at the time, but when she was finished, he told her to eat healthy so she wouldn't be at risk for diabetes on top of everything else. So.. I didn't want her to be on a crazy or unhealthy diet and discussed South Beach with her team and they agreed that it was a healty balanced diet. She pretty much just doesn't do sugar, bread, and junk food.(Lean meat, veggies, and good carbs) Oh, and the good news I forgot to mention, she can finally have salads after all these months of not being allowed to eat them! She eats a lot of wok stuff, like stir fry and grilled chicken. Anyway, I didn't want everyone to think I was starving my child. :)
XXXXOOOO
Monday, March 24, 2008 11:22 AM CDT
Day +202
Hope everyone had a Happy Easter! Bryan had to work so we are having our Easter dinner tonight along with Ian's "birtday celebration". My baby is 11 years old today! Usually, when Bryan works his 24 hour shift on a holiday, I would just cook at the fire station or bring food there, but since Leigha can't be out like that, we decided to wait until today. I am cooking/helping the boys build Ian's birthday present: a huge half pipe for the back yard. So.... hopefully the next journal entry will not be telling about my broken femur or Bryan's broken hip, since we refuse to believe we are getting old and think that we have every right to be doing anything that the kids can do! Leigha is making Ian a homemade cake, and Ian has his own ice cream cake. Leigha has been strictly following the South Beach diet, but I hope she will at least have a piece of cake!!
Labs last Wednesday were good. So good, in fact that Deb said not to worry about getting them this week. We got to skip Duke last Friday, but go for check-up on the 28th. Leigha is down to 2 cyclosporines in the morning and 2 in the evening and so far, thank God, no signs or symptoms of graft vs. host!! A lot of the other meds that she took 3 times a day, she only takes twice. And some of the ones that she took twice, she only takes at night. So, slowly but surely, she is coming off of the meds! When she is completely off the cyclosporine, her immunology should come back better and she can actually go places, even school and movies and stuff like that. As much as we love being at home, it's hard for her not being able to go out. She's really looking forward to school, camp, and has already asked if we are going to Flash's house for Thanksgiving!
Well, the boys will be back from a trip the the store for a fitting for the nail gun, and I'd better not me in here on the computer unless I want to be ridiculed for not helping!!!
I will say that all the tests that came back from the 6 month studies were good and the 9 month studies have already been scheduled for June!
Oh, and I take my real estate test on Thursday, so wish me luck on that. And please continue to pray for Leigha and all the other kids who are going through so much.
XXXXOOOO
Saturday, March 15, 2008 1:05 PM CDT
Day +193
We are home!! We got to NC at about 9pm on Wed. and the hotel had lost our reservations. I had gone thru the Duke social worker to get a medical rate. I had done this in January and she had made the 2 night reservation in February, but the hotel said they did not have the reservation and that they could give us a room for Wednesday, but they were completely booked up for Thursday. I paged the lodging coordinator and she accessed the work computer from her home and did in fact have our reservation with confirmation, but said she would have to fax it to the hotel to the reservation's manager and that would have to be Thurs. morning. In the meanwhile, the reservationist at the hotel said that we would have to check out on Thursday b/c there were absolutely no rooms available for Thursday. Long story short, we worked it out, but it was kind of stressful not knowing if we were going to have a place to stay or not! I did not want to move rooms, either, because when we got there, I completely went over the room with disinfectant and even though we were only staying 2 nights, we packed a lot of stuff, including 2 coolers full of food so we wouldn't have to buy breakfast or lunch. We ate at Outback Wed. night and when I called the order in, they remembered Leigha and remembered everything that we order and how it has to be prepared. Wow!
Thursday, we went to Duke, and Leigha got her blood work done. Only 12 tubes. Ha ha. Leigha's nurse was awesome as usual, she got her checked in immediately and took her right to a room for labs. Then she had her echo, pulmonary tests (she did great, but on the most difficult one, the machine kept malfuncioning and she had to do it over 4 times! Then she had her chest x-ray. Then Leigha and I went up the 5200(the bone marrow transplant floor so Leigha could drop off some things and visit with her nurses. Because of the flu precautions, we couldn't enter the unit, but her nurses took turns coming out to visit with Leigha. Then, we went back to the hotel. We watched tv and then all of us napped (a lot) and we got up and ordered Kanki's (japanese steakhouse) to bring back to the room. It was the first time we have had that kind of food since Leigha went in for transplant and it was great. We decided with all the flu going around in NC that we would not go to the skatepark/shop or the Barnes and Noble even late at night, because it just wasn't worth Leigha or us picking something up. Instead we watched movies (jackass 2.5 and zoolander)
Friday, we went back to clinic. It was a little more crowded cuz it was 10 am, but we got visit with some of the people we met during transplant. We saw Elmer's mom, Anna, and finally caught up with Jared and Katherine!! Leigha had a super-long list of questions for Deb, her np. She got favorable answers to most all of her questions! Then Bryan and Ian came in the exam room and Dr. Prasad came and I can't tell you how it felt to see Leigha laughing and joking with her doctor, and thinking back just 6 months ago when the future was so scary and unknown. I remember Dr. Prasad being very honest and upfront about all the things that can happen during transplant, but at the same time, still giving us so much hope. I am so thankful to God for watching over Leigha during her treatment and for leading us to such a wonderful doctor and hospital. Leigha will continue to come off her immune suppressants. 50 % of patients have some sort of graft vs. host during this weaning of cyclosporine, but they just increase the dose and hopefully steroids will help that. If Leigha has no issues coming off of the meds, she will be able to go back to school in May!! She will get to go to Carowinds with Flash and Courageous Kidz and she will get to go to Camp Happy Days (just no swimming in the lake) Leigha can make the decision of when to get her central line out. There is an increased chance of infection having it, but w/o it she will have to get labs done thru her arm (which she hates) and if she need's iv drugs, she will have to do the same. I like how they give Leigha the last word on things like that. And her nurse Deb told her that during and after treatment that she wanted Leigha to keep her e-mail address, her pager, and her phone number, and if Leigha ever needed to talk to her, to never hesitate to call. She told Leigha that she was lucky that she and I had a good relationship and could talk about most anything, but she always made sure that her own daughters had a healthcare professional that they could trust and have access to at all times. It is comforting to know that Leigha's team is there for us during her treatment and post transplant care, but also knowing that they truly care about her and what happens to her in the future and will be there for her always.
Anyway, during the Friday appt. we got some of the labs back from the previous day. Her wbc was a little low, but anc was over 1000. We'll get local labs done Wednesday. Her hemoglobin had come up a little on its own 10.? And her platelets were 181,000. Woo hoo!!! Her heart and lungs look good.
After the appointment, we stopped by Barnes and Noble and I ran in and got Leigha and Ian a couple of books and then we came on home.
Bryan and Ian just left to go pick up Dude. He stays with his "girlfriend" Lily when we go away. I am about the go finish cleaning the garage. Yayyyyy! Thank you for checking in on Leigha and please continue to pray for her and all the children battling this horrible disease. Also say a prayer for our friends Lisa and Renee who are recovering from surgeries.
Love, Mary
Saturday, March 8, 2008 1:17 PM CST
Day 186
Hello, Everyone! Hope you are all doing well. We are great! Leigha's cold seems to be clearing up. She's been having some stomach aches, but I don't think it's gvh. We are going for her 6 month studies next week. She will get lots of lab work-you would not believe how many tubes of blood they take for the big check ups. I think her record at 1 time is 23!! The labs will check things like what percentage of donor cells are present (hopefully 98 /c that's the best you can get!) how her immune system is improving, and lots of other levels. Then she'll have and echocardiogram, and then Leigha's favorite: the pulmonary funtion test. Ha ha! This is not painful, but very, very tiring. It's not just one test, it's many tests that measure her lung functions. Then she will get a chest x-ray. She also will be seeing Dr. Prasad and her nurse prac., Deb. We had hoped to maybe get permission to go to the skateshop at closing, or to Barnes and Noble late on a weeknight, but with all the flu going around in NC, I don't know if we will be able to.
Today is another beautiful day, but I doubt we will go outside, because the wind is blowing like crazy. When I look out of my kitchen window I can literally see things blow down the street!
Well, I am going to try to get some studying done. My test day will be here before I know it and I want to be ready.
Thank you everyone for checking on Leigha and for signing her guestbook. Paul and Janet, we were just thinking of you and hoping all was well with you. Sorry to hear you've been under the weather.
We'll update with Leigha's study results if not sooner!
Wednesday, March 5, 2008 12:46 AM CST
Day +183
It is a beautiful day!! Leigha and I are going for a walk. She is still fighting what seems to be a head cold. Night before last she told me her left lymphnode was sore and it was a little swollen, so I called Duke. The dr. on call said that if she did not have a fever, we didn't have to come, but if she did get a fever she would have to go locally for cultures and antibiotics. The next day I called Dr. Lindsey, Leigha's local dr, and told the nurse that Leigha was fighting something and I just wanted to make sure our direct-admit plan was in place, so she could go straight to the pediatric unit at Conway Hospital and not the ER. When I told her Leigha's signs and symptoms, she checked with Dr. Lindsey and he wanted to see her. I was nervous about her picking up something worse at the dr's office, b/c there is so much sickness out there right now, but Leigha wore mask and gloves and they brought her in the back door to a room that had not been used all day. Dr. Lindsey has been so good to us and gone out of his way to accomodate Leigha's situation. We are lucky to have him as her local doctor. He did not seem really concerned and told her to take Sudafed (which Leigha told me on Saturday that she needed ) Anyway, she is still fighting it and thank God, no fevers. We are scheduled to go to Duke next Friday for 6 month studies. I decrease her cyclosporine again on Thursday, and Leigha is so glad to be coming off of that.
My class is going well. Bryan is working hard. Ian got a haircut Monday, not short, but it's not as long as it was. He didn't care for it at first, but is getting used to it. I stayed up until 4am after my class last night organizing and alphabetizing all the books in the library. Can we say: OCD???? This was after I disinfected the entire house after the electricians had been working all day. Yes, I have a few issues, but I guess cleaning isn't the worst obsession I could have-it's better than a crack pipe, right?
Thank you to everyone who has responded and helped me gather information to correct the cancer registry. I have heard from 15 parents/friends already and know that there are more children who were diagnosed during 2000-2008, so I'm going to keep gathering information until I feel like I have a more accurate number.
Well, like I said, it's a beautiful day and I think that Leigha and I are going for a walk since the wind isn't blowing to hard. (she doesn't like wearing a mask, but has to if the wind is blowing) I have kept her in since she has been having the cold symptoms, b/c it's been cold, and I didn't know if it was maybe allergies aggravated by something outside, but I think the fresh air and sunshine will do us both some good!
Have a wonderful day!
Sunday, March 2, 2008 11:55 AM CST
Day 180
All is well here. No gcsf for 10 days! Leigha's labs on Thursday were great. We do local labs tomorrow and that will determine if she needs them done on Friday or not. She seems to be trying to get a cold, so we have been giving her plenty of vitamin c and trying to be especially careful. So far no fever, just runny nose and sneezing. Please pray that it doesn't turn into anything serious. We have about 2 more months until Leigha is off her immune suppressants and I pray that she can stay well until she has some immune system to fight off colds and flu and stuff like that.
I am halfway through my class and test for my real estate license in a few weeks. My class has at least 20 people in it. The real estate book is divided into section A and B and so is the class. It works on a rotation where half of the class is always a section ahead of the other and when they complete the book, that half tests, and a new class starts the next section. Anyway, what's important is that the half of the class that tested last week had probably at least a dozen people in it and only 2 passed the test. It's not even the state exam, but the classrroom exam. I wasn't the least bit worried about passing the test, because I really think I have a good grasp on all of the info, but now I'm thinking that I might study a little bit harder!
Well, it's a beautiful day, and I'm going to get my housework done, b/c Ian wants me to go skateboard and Leigha and I are going to take the golf cart out after that. (if I don't break my leg-Ian thinks I'm ready to do more on the board and is a challenging teacher!) :)
Thank you for checking on Leigha and for signing her guestbook. Even though she doesn't personally update,
she checks her page everyday!
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Sun. 3/2 To whomever can help me with this:
I reviewed the numbers that the SC cancer registry had for pediatric cancer cases in Horry county and feel like the numbers are wrong. In 2004 they state that there were not more than the expected number children diagnosed with leukemia. (2) I personally know of 2, my daughter, Leigha and a family friend. I know that there were others but would like to have information to present to the registry, so they can ammend their numbers. There is a high incidence of pediatric cancer in Horry County, and it needs to be acknowledged and addressed. If you know of a child who was diagnosed with cancer between 2000-2008, please e-mail me with the following information: name, address, diagnosis, year of dx, and any other information you would like to share. If I have anyone's work e-mail or you can't answer this for hippa reasons, if you could just tell me the number of cases you are aware of. Thank you for the information. God Bless! Mary
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Saturday, February 23, 2008 4:17 PM CST
Day +172
Leigha and I got up at 5:oo AM yesterday. Well, I got up at 5:08, because I hit the snooze button and she got up at 4:59 because she said she was going to get up earlier than me and get dressed and pack her bag to take to Duke. Well imagine my surprise, when I went upstairs with the chore of waking her up and she was already dressed and ready!
It was bad weather driving to Durham, but we had a nice drive anyway, talking and listening to cds that Leigha made her Dad for his b-day. Leigha had a wonderful check up!! Her labs were great. Her hemoglobin stayed up on it's own, her platelets are almost in the normal range, and her wbc was 13 (she got gcsf the previous day, but the Dr has d/c that unless her wbc goes below 3.0. I asked Deb, Leigha's np, if Leigha would still need washed 0- blood or could she have her new blood type. Deb told us that she didn't think Leigha would be needing blood, that looking at her labs, it looks like she has "turned the corner". They are going to start slowly taking her off of Cyclosporine (immune suppressants) and once she is off of those, she will be able to have a more normal life and not worry so much about germs and crowds. We will have to watch for graft vs. host disease especially as she is coming off of the immune suppresants. The virus that we found out that she has (that musc wanted to treat and Duke didn't agree with) seems to be resolving on it's own. It is still present, but at much lower numbers and Dr. Prasad says it does not worry him at all. I am so thankful that I checked with Duke and did not allow Leigha to have that treatment, because who knows what it could have done to her kidneys and engraftment. I am still so hurt that a hospital that I trusted would tell me that Leigha's primary Dr. agreed with a treatment, when he told her that he did not want Leigha to have it. I am thankful to be back at Duke. Leigha and I both feel very comfortable there. If all goes well, Leigha will not go back until her 6 month studies on March 13 and 14th, partly because she is doing so well, and also Deb does not want her out and about until this flu epidemic has subsided. It was a wonderful checkup and we came straight home, and the weather was a lot better on the return trip.
We got off of 95 and I got pulled over for speeding. I explained to the officer that Leigha would have to put a mask on if the car window was down. He went to run my license and when he got back, I noticed that he looked very concerned about something. He was looking in the back of my car and watching me close and asking me questions like where I lived (which he'd already asked) and then he asked if I had anything in the car that I shouldn't, because he smelled a strong odor of alcohol. Well, at first I was like, No way, I've explained to this guy where I live, where I'd been, why I'd been, and then I remembered that I had just pumped gas and instead of going in the station and washing my hands, I dumped a bunch of Purell hand sanitizer,(which smells really potent especially when you use too much). I explained this to him and was trying not to laugh and look like a drunk, but the whole this was kind of funny. He gave me a warning and then we drove on home! Only I could get a dui for being under the influence of hand sanitizer!
Oh, I don't think I told you last week that Leigha got a post card from Wee Man. I thought that was kind of cool. It was a post card of him at 2 Felon's Skateshop and he had written her a get well message and signed it. She has it upstairs with all her Bam, and Luda Crooks stuff.
Please continue to pray for Kayla's chemo to get and keep her cancer in remission, and for our buddy Jared who is in the hospital with some breathing problems. Thanks for checking on us!!
Tuesday, February 19, 2008 10:04 AM CST
Day +168
Our routine with local labs is getting better. Conway Hospital is getting used to our situation of dropping off labs, and it doesn't take very long at all. They faxed the results to Duke, and Deb e-mailed them to me. Her WBC was 2.8, her hemoglobin went up on it's own to 9.4 and her platelets were 125!! So, if all continues to go well with Leigha this week, we will just go to Durham on Friday for her appointment with Dr. Prasad.
We have not let our guard down, but I realized that Leigha really, really needed to spend a little time with someone other that me, Bryan, and her brother. Last Friday, I let her skip "school". Her friends Samantha and Maria walked over here after school and the girl's walked around the neighborhood and stayed outside for a couple hours. Then on Friday, after making sure that Sam was completely well and giving her the drill on handwashing and the no shoe policy and such, Leigha invited Sam over to spend the night. They had fun, and when I told Leigha that it was too windy to go outside without a mask (she did not like this idea) her friend Sam wore one, too. They decorated them and everything. I can see a definate improvement in Leigha's spirits. She is sleeping better and everything. She wants to have 2 of her other friends spend the night (Danielle and Maria) and I will ask the Dr. on Friday.
School is going well. We are all very busy. Bryan got the shelves painted and up in the library, and I organized bookds until 2 am last night. I need about 3 more rooms of shelves! You would not believe how many books we have collected over the years!
I will update when we get back from Duke. Have a great week!
Friday, February 15, 2008 9:45 AM CST
Day +164
I am very happy to say that Leigha's labs yesterday looked good and if her labs on Monday are stable, we will not plan on going to Duke until next Friday. She continues to feel well and we have just been trying to keep her healthy, especially until she can start coming off of the immune suppressents, and her immune system is working a little better. All in all, things are going very well. She gets a little down about not being able to go anywhere. We have been especially carefully, even having people come over because of it being flu season and all that. Leigha has been reading ALOT. She has broken down and spent the rest of her b-day stash on books and I broke down and got her a big pile of books the other day, too. I read very fast, but it amazes how fast that girl can read. She really wants to go to school, but since she can't, we are grateful for her homebound teacher, who couldn't be a better for Leigha. He is a great teacher, but has a wonderful personality, and somehow cheers her up even when she is in a bad mood. They have gone over more material in a dozen hours that Leigha learned the entire time we were at Duke!!
Ian is doing well. He has one basketball game left. I love watching his games! He will not be playing baseball this year-he told me he doesn't like it, but promised he would get plenty exercise skateboarding, and play football again next season. He has been busy at school with lots of projects. He had to perform a task and explain to the class exactly how he did it, in order, (directions) so they would be able to perform the task. I suggested making cookies with me, and the class could eat the cookies after Ian explained how he made them. He told me that everyone would be doing something like that, so my son made a battery out of lemons! He even had a light that he turned on with it. He is full of these ideas ever since he read that book that Beth gave him for Christmas called the Dangerous Book for Boys, I think. Today he had a project on the Roaring Twenties and he made a poster about 2 boxers (I'll have to ask him the names) and he was going to dress up like a boxer. I am curious to see what he actually wore to school, because Bryan got him ready and took him this morning and I slept in. Next week, he has a book report. He read a very long biography on Cris Angel, that Leigha bought for him, and will be reporting on that as well as doing some illusions that he's gotten quite good at. He was student of the week for being "polite", and the teacher told me he is one of 2 children in the class to always say, "yes, maam" and "please" and "thank you" and general good manners. I am so proud of him! One more Ian story: He has been building a lot with his legos and has been begging me to allow him to put our old kitchen table (that we didn't use in this house since we have a counter in the kitchen)in his bedroom. He wanted something to build legos on. I told him that a kitchen table would look out of place in his bedroom and take up too much room. I finally gave in, and he helped me haul it down from the room above our garage. So, Ian now has a kitchen table in the middle of his bedroom. I figured what would it hurt? I need to get over my need to have everything just perfect, and it made him so happy-he thanked me like 10 times and told me how happy that it made him to have a table in his bedroom!
Bryan's birthday was Wednesday, but since he worked his 24 hour shift, we just dropped off a cake at his work. Yesterday, we celebrated his b-day. Leigha burned him some cds and we gave him a plaque. I put a pork roast in the crock pot to make homemade barbeque, and slow cooked it all day. Leigha made him a cake and decorated it. Well, at 4pm, I went to take the meat out of the crockpot and make the barbeque, and noticed that I had left the little plastic thingy on the bottom of it, and was scared to serve it, because I could just imagine all the carcinigin plastic juice that was bubbling in the crock pot after cooking all day. It was awful, because, we had smelled it cook all day and could almost taste it, and I was almost running late for school, so I had to make something quick, which turned out to be hotdogs (which are NOT Bryan's favorite thing for dinner. The only thing that made me feel better is that the roast was on sale, but I will definately be more careful next time!!
School is going well. There are lots and lots of terms to learn. I feel pretty good about it, even though the test questions are worded to confuse you. There is also a lot of math, but Leigha has been helping me study. I'm not kidding, that by the time I am finished with this class, she will be able to pass her real estate exam!!
Oh, Leigha put a picture of Dude on the photo page of this site. I forgot to tell everyone. It is not the best picture,and is a little old, but it will give you an idea of what kind of monster he is!!! The tiles under his feet are the 18" kind and if you'll notice his size compared to the appliances and counter top!! He's a big baby, though!!
Please say lots of prayers for our little friend, Kayla, who had transplant about a week after Leigha. She is 8 years old, and has a very good attitude and sweet personality. We had fun playing games in the playroom on the transplant unit together. Kayla's family found out that her leukemia has returned and I ask that you all please stop what you are doing and say a prayer for this sweet little girl. She is like Leigha, in that she does not complain about what has been dealt to her, but makes the best of everything, and is positive and thankful for the good things. Even now, when I read her caringbridge, she is telling her Mom that everything is going to be ok, and it breaks my heart that she is going through this after everything else that she has had to endure.
Also, please remember someone else we know, named Trish in your prayers. She is part of our firefighter family, and a wife and mother of young children, who found out that she has a mass on her lung and is waiting for the results of the ct scans.
And thank you for all your prayers for Leigha. Please pray that she continues to feel well, with good counts, and remain free of symtoms from this virus that she has, so she does not have to endure the toxic treatment that may damage her kidneys and engraphment. God is good!!! XXOO Have a wonderful weekend.
Saturday, February 9, 2008 4:30 PM CST
Day 158
Leigha and I are home!! She had a great check-up yesterday. She had a lot of lab work done, and what we got back looked pretty good. Some of the tests will take a little while. Everyone seemed happy with Leigha's progress so far. I feel like we are making the right decision by having her follow-up care done at Duke. I have such trust in her team of doctors, and Leigha is more at ease there. I will update better later. I have meds to do and dinner to cook before I go to work. Thanks for all the prayers and know that Leigha feels good and had a good checkup and we will update soon.
Thursday, February 7, 2008 11:36 PM CST
day +156
I hesitate to even try and post tonight. I am tired and emotional and have several things to do before getting a couple hours sleep and driving to Duke tomorrow morning.
Leigha's nurse called from Charleston today and told me that one of her tests had shown that she has a virus. It is something that most people are exposed to as children and never have any problem from, but in immune suppressed people and bone marrow transplant patients, it sometimes causes some trouble. The attending bone marrow transplant dr got on the phone and told me that Leigha needed to go to clinic in Charleston first thing tomorrow morning, for an all day treatment for this virus which includes oral meds, fluids before and after and an iv medicine. She said the fluids help prevent kidney damage, and that the treatment would be every week or every other week. She said that more than anything it will be an annoyance.
I paged Leigha's np in Durham just to let her know of Leigha's new complications, and she told me that she was going to get Dr. Prasad to call me, because she wasn't sure if he would want Leigha to have this particular treatment as it is very toxic and can cause major kidney damage. Sure enough, Dr. Prasad called me right back and said that this treatment is very toxic and can even effect Leigha's bone marrow graft and at Duke that do not treat this particular virus with this particular treatment unless the patient is symptomatic, because the benefits don't outweigh the risks, pretty much. He wanted to speak to Leigha's dr. in Charleston before he felt good about her getting the treatment tomorrow. I called MUSC and asked that Leigha's Charleston dr. call Dr. Prasad before we decided on going through with this treatment. Awhile later, I get a call from Charleston saying that Dr. Hudspeth had spoken with Dr. Prasad and that Leigha needed to be at clinic at 9am. Well. I felt better knowing that the 2 agreed, but then worried at why Dr. Prasad had changed his mind, maybe things were worse than I thought. So I called Dr. Prasad and found that he did not tell them that!!! He told the dr. in Charleston that he did not feel like Leigha needed this treatment at this time, perhaps at a later date she will. She told him that she disagreed, and she would call the family back. Well, the message I got was that they had agreed. Even if I misunderstood, which I didn't, they knew I was concerned about the treatment and should have let me know that there was a conflict. Instead, they misled me, on the severity of the treatment and the fact that Leigha's main doctor agreed with it, when he most certainly did not. I told Dr. Prasad that I would be bringing Leigha to Durham for clinic visits now, even though it is 4 hours away, I can't continue to go to a doctor who isn't honest with me. He told me that was fine, and that I should call Charleston and give them the courtesy of knowing that I would not be there. He never once said anything negative about that facility I called Dr. Hudspeth to let her know how I felt and she said that the entire clinic was aware that she disagreed, and the confusion must have been in the way I interpreted the deliverence of the message. Huh??? Anyway, she said it's their standard procedure to give this particular treatment and I told her I thought that she would be consulting with Leigha's drs. at Duke on issues like this and she laughed and told me about all her qualifications and Johns Hopkins training and said that she was not going to consult with another dr. on "every little thing". And I told her that I didn't expect her to consult on every little thing, but this is not a little thing. She then said that Duke does alot of things that other hospitals don't agree with and they had many practices that the "bone marrow community" did not agree with. And if I did not agree with her decisions, that I may need to be treated at Duke again. Which was exactly what I was thinking!! I did ask about the side effects of the treatment, which she explained a little better, but I should have been made aware of initially. She said that even with precautions, it could cause kidney damage.
That's not every word, but sums it up pretty well. We are going to Duke, hopefully for the day, but they may want us to stay. I have a much better comfort level with that hospital especially dealing with a potentially serious problem. They have done well by us so far, have never lied to us, do not feel like it's necessary to tell me where they were trained and have never put down other hospitals even when other places have fallen short. Also, they truly care about Leigha, encourage us to keep them informed even though she has come back home.
I will be sad to leave some of the nurses, nps, and Dr. Kraveka, but I feel betrayed and misled and will have a problem trusting anything I'm told from them now. My heart tells me that I am doing the right thing and Leigha agrees. She misses everyone at Duke, but doesn't want to get "stuck there" for a long time.
As much of a bad day that I thought I had, I just checked in on my caringbridge kids, and read that sweet little Kayla who had her transplant right after Leigha got some bad lab results back, and her docs are doing a bone marrow biopsy tomorrow. Her mother is praying that the results are wrong, because if not, they may indicate a relapse. Kayla has done so well after transplant, and I pray that she continues to do well, and for these results to be a mistake.
I am way behind on returning e-mails and messages, but don't know if I will have computer access if we stay in Durham, so be patient. I'll try to update this page, anyway.
Monday, February 4, 2008 11:02 PM CST
Day +153
Thank God for good counts today. All in all, it was a good checkup. Liver counts are elevated, but the dr. seems to think it is a little toxicity of the liver and kidneys due to high cyclosporine levels, so that has been reduced again. She does not think it is gvh, and Leigha is feeling pretty good. It was a long day at clinic, just to get blood drawn and checkup (10am-almost 3pm!)but I will sit there all day long for good counts!! Her platelets and hemoglobin were good, so I think the results from Thursday were not accurate. Also, we will only be giving gcsf twice weekly instead of 3 times.
Well, it's time to go give Leigha meds and a snack, and then I am going to try to finish reading my John Grisham book. Leigha is finishing The Stand as I type. She would have finished sooner, but I left it in Charleston last week.
Please continue to pray for the Richardson family who lost their beautiful little girl, Amber. Thank you for all the prayers for Leigha, we can honestly feel them working, and taking weight off of our shoulders!
Love, Mary
Sunday, February 3, 2008 10:23 PM CST
Day +152
Today was a beautiful day, and we spent a lot of time outside. I was especially aware of how fortunate my family is to all be together and have each other. Each day when I get up, I have my coffee and check on my caringbridge children, just as you check on Leigha. I have laughed and cried as I read other journal entries, but I was very, very, saddened to read Amber's update. Amber earned her angel wings yesterday morning. She was the little girl who we met on the bone marrow unit when Leigha was first admitted. At that time, in September, Amber was over 1 year post transplant and had spent a vast majority of that time in the hospital, but she always had a sweet smile, and would explain that she had encountered "a few bumps in the road". They were in the hospital when we were discharged, and have been in the hospital the entire time we were in the apartment and since we've been home. People tell me that they don't know how I am so tough, well, I have always felt that way about Nancy, Amber's Mom. She has hardly seen her older daughter in 1 1/2 years, and has only seen her husband in passing, and has had to watch as her daughter seemed to get better, only to have something else happen. I sat here and cried this morning, for Amber, and all the other children who we met who have passed away. And even though I am thankful that Leigha is doing so well, I cried for her and all that she has gone through, and all that she will continue to endure until that day that she can be "normal". I wonder if we will ever be able to go through a day without worrying about germs or cancer, and then I feel guilty, because Amber's family is making funeral arangements right now. Please, I ask you all to pray for the Richardson family. (www.caringbridge.org/visit/amberrichardson)
We go to Charleston first thing in the morning, so I need to get some things done and get some rest. I'm hoping for good counts. The local lab is working with me after much negotiation, I am allowed to draw labs and drop them off. On Thursday, I got home from dropping off Leigha's blood and got a call from the lab that there was too much blood in the tube, and I would have to draw another sample, which I did immediately and drove back to the hospital and dropped it off. When I had not heard from MUSC (who is supposed to have the results faxed to them right away, and notify me of the results) by 4:30, I called them before they closed and they had not gotten the 2nd results, and nobody at the lab knew what had happened to the blood. Later, one of the fellows from MUSC called with results that were surprisingly low (platelets, and hemoglobin had dropped since Monday) So, I'm hoping that it was a lab error, or results from the first blood that they told me was not accurate because I had too much blood in the tube. Anyway, we will find out tomorrow, but Leigha has felt pretty good. She just has a difficult time sleeping at night.
I will let you know how the appointment goes. And I start school on Tuesday. I will be going with Kim Bodkin, a friend from church.
Good night!
Wednesday, January 30, 2008 10:39 AM CST
Day 148
Ok, I have a few more minutes today. I was very rushed when I updated on Monday. I was also worried that Leigha was coming down with something, because she got sick at clinic and just didn't look her usual vibrant self. No more stomach problems and no fevers, though. She has just been a little tired, and kind of bummed out about not being able to go anywhere or be "normal". I keep trying to reassure her that she is already halfway to the point that she can go places, and hopefully the rough half is behind her, but I know how very difficult it must be for her.
Mr. Crawford came over yesterday for her homebound. I am so thankful that he's her teacher. They get along great and he is a great teacher/person.
Earlier in the day, yesterday, it was so beautiful outside that Leigha and I went for a cruise around the neighborhood on the golf cart. It was fun.
I have been trying to put some pictures of Dude on here, Karen F. but they have to be jpg for caringbridge, and I don't know how to do that, so we are at Leigha's mercy on that one, whenever she feels like doing it. :) And the housing market is not the best, but it can't stay like that forever. Plus, if I can make it when it's rough, I'll really rock when the market gets better.
Anybody who knew me a hundred years ago, will remember the 1968 Mustang that I had when I was 16. That was my very first bank loan. My boss, Stanley Schoppe, co-signed for me, and I paid it off working at his Dairy Freeze and Stan's Skateland. I loved that car, but had to sell it, and always wished that I could have kept it. Bryan always kept his eyes open for old Mustangs for sale, but I told him that I didn't want A Mustang, I wanted MY Mustang. Well, my friend/ adopted brother, Ben, e-mailed me asking me some info about my old car. He was working a deal with the owner (the same owner-her dad bought her the car when she was 14 and she has had it all these years) Anyway, I told Ben that if his deal didn't work out, to let me know, and being the kind understanding person that he is, he told me that it would mean more to me to have my old car, and he gave Christy, the owner, my phone number. Bryan and I discussed it, and it would be a good way for me to lose a car payment, by selling my car, and it will be cool to teach Leigha to drive the car that I drove when I was 16. So.....my wonderful husband got off work on Sunday morning, pulled a car trailer to the good ole Northern Neck of Virginia, got my Mustang, and pulled it right back home!! I'm so excited! The Washington and Lee High School parking pass in the back window makes the whole deal even better!!
Thanks for checking on us. Sorry for my slack updates, and maybe, just maybe, Leigha will do the next update and post some pics of Dude and the "new" car!!
Monday, January 28, 2008 8:09 PM CST
day +146
This will be a quick update. Went to Charleston today. Leigha had a little stomach ache. After her labs were drawn, she took a nap in the recliner. When it was time for pentamadine and check up, we went back to the exam room and Leigha got a really bad stomach ache and threw up. It was the first time since we left the hospital at Duke and I was hoping that it wasn't a virus or something bad. They stopped the pentamadine, put us in an isolation room and gave her fluids, then gave her the pent. and we got to come home. We got Outback to go for old time's sake, and Leigha ate well and is playing guitar hero. Her platelets and rbc was good. wbc/anc was 2/998 so we will do gcsf 3 X's this week. I am in a hurry b/c her infusion is almost done and I need to change caps, dressing, and read with Ian.
School starts (for me!!) on Feb. 5th. I will be taking my real estate exam in a couple months.
I'll update better later. Love to all!!XXOO
Wednesday, January 23, 2008 10:13 AM CST
Day +141
We went to Charleston yesterday for a check up. Leigha's counts were great, except her wbc was still a little low. Dr. Hudspeth decided to do her gcsf on Mon. Wed. and Fri. regardless of counts for awhile and see if that will give it a boost. In NC they were more concerned with the wbc, because they knew that her neutrophils were immature, but at MUSC, they want her ANC to be over 1000.
Leigha had a long list of questions that she presented to her np, who in turn checked with the dr. and I was amazed at some of the things she got permission to do. Leigha can start wearing contacts, and eye make up. She can skateboard if she wears protective gear and doesn't try any new tricks. (the dr. wasn't thrilled about this one, but Leigha was!) She can go to Walmart very, very late at night or very very early when there aren't many people there. She can not get her ears repierced for awhile, but was so happy with the other news that she didn't care.
I have filled out the paperwork for the homebound teacher, who will in fact be exactly who Leigha was hoping for. (Mr. Crawford) So, soon, she will be resuming her school work.
We are getting used to being at home and loving every minute of it! Our heat and air system crashed (right after I let the insurance policy expire that would have covered it) but we had it fixed on Monday. I was scared at how much it would cost, but it wasn't too awful bad. I am concerned at what the electric bill will be, b/c the tech said that our system has been working off of the emergency heat strips for as long as the compressor has not been working and Bryan says that's been over a month! At least we have heat, because it has been COLD!
I went to my place of employment on Friday to see when I could go back to work, because when I left to take Leigha to Duke, I was told not to worry that my job would be there when I got back. Well, I was told to get back to the owner this spring when things "pick up". (This is what they tell people when they don't want to come right out and say you don't have a job) I really don't understand why this is happening. I worked there for 10 years and I wasn't fired and I didn't quit, I just left to take care of my child, and now my job is not there. I offered to take a different position, because I had a really great position when I had to leave, but the answer was still no. I told my boss that I humbly asked him for any work, even one night a week until thinks got busy, but still the answer was no. I guess it is not meant to be, and I found another job that very night, that will probably work out better for me anyway.
Thanks to my friend Laura Haney for contacting a friend of hers at Southlantic Water who very kindly hooked up our water purification right before we got home.
Leigha's friend Maria made us some delicious brownies. Leigha's "Uncle Fitz" and "Aunt Kim" got her a sippy cup, which is kind of a joke between them that I won't get into.
Also, Leigha's friend Danielle, and her Mom stopped by last week. Danielle had decided to collect some money to put together a care package for Leigha since she would not be home for Christmas. She made flyers all on her own, and that child collected enough money to buy a tub full of gifts. (even for Ian and Bryan and me) and over $600 which I used for my car payment and luckily had put the rest away and that's what I used to fix the heater!
I was going to write more, but it is medicine time and I'll catch up later!!
Monday, January 14, 2008 10:19 PM CST
Day 132
I am sorry to keep you in suspence for so long. And I apologize that you are stuck with my boring old update, but the princess of wit and humor is too busy settling back into her room to grace us with another update so soon. I was trying to wait for her to update, but I noticed a hint of impatience, so I will do a quick journal entry, and encourage Leigha to take over soon.
Friday, we went to see Dr. Prasad. Leigha had a good check up and afterwards we went back to the apartment and ate a late lunch (since Leigha can't eat 'road food') and we turned in our keys and got the heck out of there! I had packed the car that morning, and even with sending Bryan home with a couple loads of stuff earlier in the week, our car was packed. There was not room for one more thing. Ian called and asked me breathlessly where we were and when I told him South of the Border, I heard him relay that to his Dad. Then Ian whispered that he was helping his Dad dust and vacuum and accidentally broke the crystal candy dish. I could tell he was really worried, and I remember being very attatched to the dish that someone had given me as a wedding present, but I honestly couldn't even remember what it looked like, and when I told him not to worry about it I could tell that he was releived!! Then Bryan got on the phone and told me not to get mad if everything wasn't done and I started worrying about the condition of the house because the 2 of them were sounding kind of frantic.
I had to stop for coffee to stay awake right before we got to SC and Leigha and I agreed that we would miss how nice people treat you at places of business in NC. I'm not saying that everyone in SC is mean, but everywhere in NC from McDonalds, to Hardees, to the skateshop, hospital, convenience store, grocery store, etc. is just so polite and friendly it's kind of surreal.
As we got into Conway, it sunk in that we were really going to be home and I got excited and Leigha just kind of sat there. I asked her why she wasn't excited and she said that she would believe it when we actually got home. She said that if all the tires rolled off of the car, or I had some kind of a fit that I couldn't drive, or an astroid fell out the sky and smited us (her exact words) she would not really be surprised. When we got home, Bryan and Ian came to the door, and I swear, Bryan was so sweaty and out of breath, he had really been working hard. I was so happy to see how nice the house looked that I held my tongue and didn't say how much he could have done w/o killing himself if he had started 5 months ago!! :) Seriously, he did ALOT of things to the house and it looks great. Then I saw Dude and I thought I was prepared for how big he had gotten, but he is HUGE. He is very well behaved and hasn't been a bit of trouble. He doesn't jump up on people (thankfully) but if he gets excited he prances around on his hind legs and he's taller than Bryan. His head is way bigger than a basketball and I know he weighs around 200 lbs!!!
I have been very busy unpacking and organizing and getting settled in, but am just about done. Today, Leigha had her first checkup back at MUSC and it went very well. It was so good to see our nurses and drs. that we haven't seen for so long. We played Scattergories with Michelle and everyone was happy with how good Leigha was doing. We got a surprise when we saw that Pam, Leigha's primary nurse from 4 years ago was still at clinic. She was supposed to have moved to Mississippi to be with her family, but things just haven't worked out for her yet. She is leaving next week and we wish her the best, but were glad that we got to see her one last time!
I'm trying to get Leigha's homebound lined up. Hopefully she will have Mr. Crawford like last year. I also called the hospital where I am supposed to take Leigha's blood for local labs, since she can't go there around all the people. I wanted to make sure that they used the same bullets (tubes) that I have been using at Duke. I was told that they don't allow "random people" to bring blood in, because they couldn't be sure it was really my daughter's blood unless they drew it. I assured her that I wasn't going to risk my daughter's health by bringing someone else's blood and it wasn't some sort of drug test it's a CBC and platelet count to see if Leigha needs blood products. She said that the only alternitive would be to have a home health nurse come to our home and draw the labs and bring them to their lab. That means paying 2 people to do something that I am capable of and have been doing for months. Anyway, we will figure something out and we are thankful for all the good news we had today.
Blah, blah, blah, I had a lot to report, so I didn't have time to redeem myself and be witty, but I'll just say this: I'll do a little better in a different environment. I wrote for 5 months about dr. appointments, what we ate, what we saw on tv, and when we slept in, and there is only so much you can say about that, people!!
Thank you for all the prayers and support. We will do better on the updating now that we are settled in. Please say a prayer for Sophia, a beautiful, sweet little girl, who we met on the bone marrow unit. She has donor relapsed leukemia, and her family was hoping for a second transplant, but they can't get her into remission.
Oh, and today was Bryan and my 17th wedding anniversary!! He had to work his 24 hour shift. We are going to have coffee together tomorrow and clean out the garage together though!! Isn't that sweet and romantic??? Then he is going to pick up the meat and deer head that Ian shot in October and Billy from the camp had mounted. I have to convince Ian how nice it will look hanging in his closet or in the garage!!
Goodnight!!
Friday, January 4, 2008 11:32 PM CST
Day +122
Ok
I give in ;P I'll give you an update since all of you rely on my remarkable humor and wit to get through the day. Haha Just kidding. But really, I figured I'd better do an update soon or you all might like, band together and attack me or something...
Ummm. I've been doing good, transplant has been going really well. I'm still exercising, trying to look a little less like a bloated up chipmunk (steroids SUCK dude)
Hmmm..... What else..... (I know, don't the words flow so eloquently in my updates?) My hair's started to grow back a little, I actually HAVE some now. haha. No shiny head anymore, but I think I can still pull off the sick-kid-cancer-look if I really need to. (Some of you probably have no clue what I'm talking about, but those of you who have suffered under it's reign know how powerful it is. Seriously man. It's brought tears to the toughest of tough. Heh.)
Well the best thing that happened today (haha I made you read all the less-important stuff before I wrote this! Oh yea, suspenssssse...) was when I went to the clinic for checkup. I didn't have to get any kind of meds, haven't needed blood for like, 2 or 3 weeks, haven't needed platelets for like 3 weeks or so, which is really good. (I guess that antibody thing is going away.) Platelets have actually been rising each time we draw labs. Doctor Prasad was really happy about that, he's really impressed with how good I'm doing with everything, how I'm exercising and I guess I'm looking better than I did, got rid of the muscle atrophy or whatever. But anyway, Deb (nurse practitioner) had asked if we wanted to go home, and I was like, "chyeaaaaa...." and she said maybe like around the 18th (2 weeks from now, which was what they said 2 weeks ago.) because she wouldn't be here next Friday, she would be in like London or somewhere, but she would be there the Friday after. That really didn't make a lot of sense, so we kinda were like asking her if there was any medical reason why I should stay an extra week, and it would be easier if there wasn't a reason if we could go home the earlier the better. So she said that we really could go home any time after next Friday, (I have my last dose of some med on next Friday) she had already written up the paperwork and everything, and so we'd talk to Dr. Prasad when he came in. When he came in he asked me if I wanted to go home earlier, and I said, "yeeeea" (I mean obviously dude.... haha) And he said "When?" And I was like, "Nowww.." so he said that I could come home next Friday.
So yea
SO
PSYCHED
ABOUT
THAT!
It's gonna be pretty weird being home after being up here for like 5 months, I mean, the apartment's not home, but it's kind of become our house up here, I've gotten so used to it. Whatever,, going home is by FAR worth being nervous about the transition from here to there. I guess I'll be nervous being so far away from Duke, after seeing how awesome they are here, I'll be used to how they do things, and it'll seem really different at Conway and MUSC. I'll get used to it though. We've been reallly super careful like follow the doctors every word literally kind of careful so I guess I need to work on lightening up on like being a germaphobe a little (I can only imagine how clean the house is after Ian and dad have been alone in it for 5 months....) but hey I was back to normal last time in no time so I'm not worried haha. Just want to finally be home all together and not have to look forward to weekends just because to me that means that Dad and Ian (again, Ian's bearable because I know that when he comes Dad comes haha) are coming to visit. Speaking of that, Dad went back to shift-work so he could get the work done on the house that needed to be finished before I get home on his days off, so when he left to go back home this past time he left Ian with us.......
If I can say one thing about the kid, it's that he has a knack for being.... possibly the most irritating living being on the face of planet Earth. I'm starting to think Mountain Dew might have some kind of negative contribution to his behavior, but be fooled not, it's mainly just his character. NO ONE should have enough energy to yell and shout and jump around on the couch and skip and hop around things on one leg (and I could go ooonnnn) at like, 12:30/1AM. Not that I'm complaining or anything ahaha(Heh sorry but it was either vent about that on here or flatten his nose.) Figured this was a more constructive outlet for my frustration. Hey, if all else fails and I "accidentally" DO flatten his nose or something, the never-fail answer, "I'm on meds" is great. Some of those meds really do screw up your moods, seriously!
Ok, but ummmmm what elseeeeeeeeee..
I don't think I've updated (ok ok, I know I haven't) since Christmas and all that, but I had a really good Christmas with the family; we got some really cool stuff. And I loved how Dad and Ian got to be up here with us. Heh wish Dude could've come. haha. Anyway, I know a lot of people sent us presents, and helped us out, and there's no wayyy I could name all of them and not forget someone, and I really don't want to do that, So to everyone who went out of their way to make our Christmas rock, and also to all the people who sign my guestbook and check up on me every single day, I just want to let you know how much we all appreciate the kindness; nobody has to do anything for us, but everyone checks up on us so much, and really cares about what's going on with us everyday, and it's totally awesome that we're lucky enough to know people like that. So Thanks again to everyone for their support and their help and everyone who sent us totally cool stuff for Christmas. It really made it rock.
New Years was cool too, it was kind of different because mom usually works, so it was pretty cool that she was there. We watched the ball drop at midnight and popped those popper things (they can be dannngerous in the hands of a 10 year old boy, believe me haha) and we had gotten some New years party stuff like confetti and streamers and stuff so it was a fun night.
Anyway, it's like, 2:00AM, and this is a super long update (figured I'd try to make it as long as I could, and pack it full of as much of my unique humor and insight as possible to satisfy my readers until mom guilts me into updating again, hehe) and my hands are starting to wish they were doing something else than weaving a tapestry of witty entertainment (I'm sooo modest right? ahaha) so I guess I'll end the long awaited update here. If I'm honest, you'll probably have to deal with mom's updates for a while because you know how I am about updating, but I'll try to update maybe a liittle more often. I read all those guestbook entries, I didn't realize how much you guys liked my updates haha.
Ok Well
Peace~~
Leigha
Friday, December 28, 2007 4:43 PM CST
Day +115
Leigha had her appointment with Dr. Prasad and he was very impressed with her exercise routine and how good she looks. He has been in contact with her oncology team in Charleston at MUSC and he says they seem anxious to get her back!! He said he would imagine that we could go home in two weeks. Bryan has some things to finish at home, and we are working out what to do with Ian, because Bryan needs to start working his 24 hour shifts rather than the day work they have allowed him to do the past 5 months, so he wouldn't burn up his family leave time so quickly. I am getting very excited about going home, but have not really accepted the fact that it's going to happen. You never know what the next day will bring in the cancer/transplant world, but God has been so good to us so far. Leigha got her dicluzamab (I've never looked to see if I spell that right) and pentamadine today. We are enjoying our family time and looking forward to going home soon! We never could have made it this far without all of you, our support team, and your prayers, and guestbook entries, cards, and help. We love you!!! XXXXOOOO
PS. Hopefully Leigha will do the next update. Maybe if you could encourage her and let her know how much a personal update would mean to you....... Ha Ha.
Wednesday, December 26, 2007 8:28 PM CST
113
Merry day after Christmas. Our whole family must have needed rest because we all slept until 1pm. I got up at 7am and did Leigha's meds, but went back to sleep!
Leigha made a list of things she wanted from Circuit City and Target and Bryan and Ian went shopping with the Christmas gift cards. They got Leigha's video games and Ian came home with some huge lego sets.
Tomorrow we are getting up early to drop off labs and go to a 9am appointment. We are curious to see if Leigha's counts have held. She has not needed blood products since last Monday!! If she needs anything, we will just have our appointment with Dr. Prasad tomorrow rather than Friday. Maybe he will give us a date to look forward to going home!
Bryan and Leigha are doing exercises. I did them this morning, but they have been doing them at least twice each day. Leigha got weights for Christmas and has incorporated that into her workout. I can see such a difference in her balance and strength. Her muscles are starting to develop and define and she really looks great!
We'll update tomorrow!
Tuesday, December 25, 2007 7:35 PM CST
Day +112
Hope everyone had a wonderful Christmas. We had the best day! Even though we were not officially home, we were all together here in Durham, and Bryan and I were awakened in the traditional way, with 2 kids jumping on the bed screaming,"It's Christmas, It's Christmas!!!" That means that no matter what time it is, we have to get up and open presents. There have been years that we got up at 3:30 am, but made a deal this year that we would not get up earlier than 6pm. This morning we "slept in" until 7. We came out to the living room and the kids opened their presents. After that, I put the turkey in the oven and napped on the couch for 3 hours!! The kids played video games, and after we ate, Bryan and I went skating around the apartment courtyard. Believe it or not, Ian chose to play Halo and Thrillville rather than skate with us.
We would like to thank everyone who helped to make this Christmas so special. The kids understood the circumstances, and truly get the real reason for the season. They said that they didn't expect a lot of gifts, but let's face it, kids love getting Christmas presents! We got packages in the mail, and when Bryan and Ian came to NC last week, they were loaded down with packages and goodie bags, desserts, and grocery $$$. All of the presents went under the tree, and especially Ian was going crazy to open them. I don't want to forget to thank anyone, and some of the things were from 'secret santas'. Anyway, you know who you are, and my family is very grateful. We are so blessed that Leigha is getting stronger, and we are so excited at the prospect of going home!!
We are getting ready to chow down on some leftovers and have a guitar hero competition. Bryan just told Ian to get the game warmed up, and I just overheard Ian tell his Dad that it's not like when he was little and had to crank the game for 10 minutes before it would play!! I think Bryan is even more determined to beat him now!!
The only disappointment for Leigha and Ian was when I went to make the traditional b-day cake for Jesus, the eggs had frozen in the fridge, and cracked funny, so rather than risk using them, I told the kids we would have to do that tomorrow. I assured them that it would be ok to be 1 day late on that!
Merry Christmas, everybody!!! Much love, Mary
Monday, December 24, 2007 11:43 AM CST
Day +111
Merry Christmas, everyone. We feel so lucky to be celebrating Christmas as a family and that Leigha is doing so well after her transplant. I drew labs and Bryan dropped them off, and when Deb called she told us to enjoy our day at home today!! Hemoglobin: 8.2 and Platelets are holding at 31. The WBC was a little low, but the home infustion company is sending me GCSF and I'm giving it here at the apartment. I don't drop labs off again until Thursday, and if we need to go in for anything, we can see Dr. Prasad on Thursday and have Friday off!! Things are looking up!!
Thank you to all of our friends and family who have given us support and prayers. We miss seeing our friends and extended family and can't wait to be able to see you guys!
Merry Christmas!!!!
Friday, December 21, 2007 8:20 PM CST
Day +108
Leigha and I went to her appointment at 2pm. It was the first Friday that she did not get IVIG. Her levels were high enough. It was also the first Friday since transplant that we did not have to go to the day hospital for some sort of infusion. Progress!! Dr. Prasad was very pleased with Leigha's progress. He said her transplant seems to be working well. He has kept us here because of the platelets (which seem to be getting better!) and also to make sure her GvH doesn't come back. He says that sometimes symptoms are overlooked, but her skin looks good and she has not had any stomach issues or high liver counts. He said that if all continues to go well, we could go home in 2-3 weeks!! I called today and extended my lease and they are letting me extend it for 2 weeks at a time. We have mixed emotions, but are very happy to be doing so well. We have gotten kind of attatched to this place and it will feel weird leaving. I know that probably sounds strange to a lot of people reading this. We have not been miserable here, and this area would be really nice if we could actually go out in public!! We will miss our doctors and nurses, our new friends at Outback, and will miss having such a nice skatepark to go to. But, I have almost forgotten what my house looks like. I can't wait to have our family together again, and see my friends, and Dude (who has a girlfriend and may be a dad soon!) and cook in my kitchen, and go to Rascals, and lay in my hammock, and I could go on and on!! I can't believe we've been here since August!! I wonder how long it will take to clean the house after the 2 guys have been living there unsupervised for months! And since my novel isn't finished, I will probably have to go back to work. This is the first time in my life since I was 14 that I can say I haven't worked in 8 months! Well, so many plans to make, but for now, we are going to have a nice friendly game of Sorry. (Actually probably not so friendly, as things tend to get rather competitive in this family!) To be continued.......
Thursday, December 20, 2007 10:29 PM CST
Day +107
I went back to sleep after dropping off labs and doing Leigha's morning medicines. My thought was that I would get a little extra sleep before I had to take her to clinic and get platelets and whatever else she needed. Well, when Deb called to give me the lab results, I was very pleasantly surprised. Platelets: 32!!! WBC: 3.3 Hemoglobin: 8.4!! We didn't have to go today and it looks like maybe her counts are trying to hold. We go tomorrow for her scheduled appointment and to see Dr. Prasad. I know that her platelet problem was keeping us here and they want us to get to the point where we are going to clinic maybe once a week before sending us home. Since we have passed the 100 days post transplant, we will be sent home as soon as Dr. Prasad feels like Leigha is ready. I have mixed emotions about that! I want to go home, but I feel kind of nervous about it. As much as we want to go home, we both feel a little bit safer here. (ok, alot) I know that it is very common to feel this way at the prospect of going home.
For now we will enjoy our good news! Bryan attributes Leigha's increased blood counts to the exercises that he taught her a couple weeks ago. :) We do them every night. First, we do calf raises, our "Captain Morgan/Mule kick", squats, abs, biceps/triceps, and shoulders. Leigha has gotten much stronger, and sometimes it's all I can do to keep up with her. We also take the stairs at clinic when we go.
We will update tomorrow after her appointment! XXOO
Tuesday, December 18, 2007 6:50 PM CST
Day 105
We slept in today, because we were up all night! We went to the early movie. We saw I am Legend with Will Smith. It kind of reminded me of the Stand. Leigha is reading The Stand and she said the same thing. We really liked it. After the movie, we went and got Outback to go, and when I picked it up, I finally got to meet, Krista, the manager, in person. She has been very nice to us.
Leigha got 2 packages today. One was an ornament from Lisa G. that says, "Dear Santa, All I want is a cure" and it has the ALL ribbon wrapped around a candy cane. It is hanging on our tree! Also, she got a beautiful, handmade scrapbook with lots of scriptures, inspiring quotes, and very impressive "crafty" items on all the pages. It is on our coffee table and I read it three times and cried all three times because it was so beautiful. That was from Robyn Feaser and friends, and now I know they don't call her Crazy Glue for nothing!
We also have presents under the tree sent from Beasie and Jo Jo and Aunt Lizzy, Michaela, Jared, and Garrett! Ian wanted to open them this weekend when they arrived, but I held my ground!!
Tomorrow, Leigha and I might ride to Raleigh for a road trip, and Thursday will be a big day of appointments. Pray for good platelet counts!!
Love, Mary
Monday, December 17, 2007 5:15 PM CST
Day +104
We have had some wonderful days!! The boys were not planning on coming this weekend, because Bryan has so much to take care of at home, but after basketball practice, Ian told Bryan, "Hey, Dad, lets go surprise the girls". Exact words-I guess because I call them "the boys", he feels like he should call us "the girls". Fair enough, I guess, and it was a great surprise!! We had a very peaceful, relaxing weekend and didn't go anywhere. Ian and I didn't even go skating.
Leigha got platelets last Thursday, and her regular Friday scheduled meds. We had the whole weekend off from clinic. I drew labs and dropped them off today, and had more good news. Her platelets were 19, which most people wouldn't be jumping up and down about, but it's the best they have held since last month. So,,,,maybe the antibody issues are resolving!! We did go in and get gcsf because her white count was low. Her hemoglobin held even with the washed blood last week! Deb, her np, said I could start giving Leigha her gcsf at home, and she would send the home health nurse to the apartment to show me how to administer it. I remembered the first home health nurse being a rather impatient person who had a not so nice attitude, who made Leigha and I very anxious, so I asked if I could have Beth,(the nice nurse). So, when Deb talked to the home infusion pharmasist, he said that I already knew how to use the pump, so I don't have to have more lessons. But: the great news of the day is about Leigha's counts holding and for that we are truly thankful!!
It is starting to feel a bit more like Christmas, maybe because it is so cold! It's time to cook dinner, but I will update tomorrow. I know I slack off on the weekends, but we try to spend as much time as we can with Bryan and Ian when they are here.
Thursday, December 13, 2007 6:26 PM CST
Day +100
A very important day!!! I can't beleive we are at the 100th day after transplant. I thank God that my girl is doing so well!!! Her wbc was 3.6. Her red blood was over 9, not a big bump for two units of blood on Monday, but washed blood is not as "potent". Her platelets were 13, so she was in and out of clinic today to get platelets. The rash on her feet I noticed last night was not GvH but petichiae, from low platelets. Leigha's "plan" for going to the hospital when we get discharged has all but been approved. Leigha's nurse prac. told me yesterday that it sounds great, but all decisions have to be approved by Dr. Prasad who we will see next week. The immunology results aren't back yet. We go in tomorrow for ivig and dicluzimab. It depends on whenever Leigha decides to start making platelets as to when we go home. When I told her that, and the importance of her 100 studies, she was like, "yeah, and no pressure, right???"
We used the rest of our Outback gift card tonight,which was wonderful, and are going to work on homework. That's the plan, anyway!!
Thursday, December 13, 2007 6:39 PM CST
Day + 100
A very important day!!! I can't beleive we are at the 100th day after transplant. I thank God that my girl is doing so well!!! Her wbc was 3.6. Her red blood was over 9, not a big bump for two units of blood on Monday, but washed blood is not as "potent". Her platelets were 13, so she was in and out of clinic today to get platelets. The rash on her feet I noticed last night was not GvH but petichiae, from low platelets. Leigha's "plan" for going to the hospital when we get discharged has all but been approved. Leigha's nurse prac. told me yesterday that it sounds great, but all decisions have to be approved by Dr. Prasad who we will see next week. The immunology results aren't back yet. We go in tomorrow for ivig and dicluzimab. It depends on whenever Leigha decides to start making platelets as to when we go home. When I told her that, and the importance of her 100 studies, she was like, "yeah, and no pressure, right???"
We used the rest of our Outback gift card tonight,which was wonderful, and are going to work on homework. That's the plan, anyway!!
Wednesday, December 12, 2007 3:18 PM CST
Day +99
Leigha and I just got back from the movies. We were the only people in the theater, so she could take her mask off. The seats are cloth and cannot be wiped off, so I just brought another shower liner and put it over the seat!! We saw Awake, which looked like one of those movies that could be really good or one where all the good parts are in the trailer, but actually it was quite suspenseful! We can continue to go to movies during the weekdays until school lets out, and we are both really looking forward to seeing I am Legend. It looks like our kind of movie and if a movie has to have only one actor, at least it's Will Smith!!
Tomorrow, I drop off labs and Leigha only goes in if she needs blood, platelets, or gcsf. It's very likely, but would be a great sign of improvement if she did not!
Leigha got a package in the mail today from Lisa G. It was an anti-cancer shirt and she loves it, but I can't tell what it says. :) A little hint: I think I saw Ozzy wearing it on his reality show.
Well, it's little old lady nappy time, and then dinner time, and then we have a triple feature of Netflix: Colors, SWAT, and Bad Santa!!
More of our jet-setting lives tomorrow!!
Tuesday, December 11, 2007 4:35 PM CST
Day + 98
Today was a great day. We did medicines and went back to sleep and caught up on some much needed rest. We hung around the apartment and then went for a nice long walk and then used our Outback gift card for some Outback take-out. We actually just finished dinner and are going to watch a movie. I may have worked out a way to resolve our homecoming delay. Duke doesn't want us in the ER, any ER-local or in Charleston. Charleston won't admit us to the hospital without going through the ER and they do not want Leigha traveling 2 hours without first being seen in Conway in case of blood/line infection. I talked to Kayla's Mom (she had her transplant a week after Leigha and they are hopefully going home next week! :) ) She said that her oncologist is 2 hours away from her home, too, but her local ped. will do a direct admit into the hospital for cultures and antibiotic, and if necesary they would be transported to the other hospital. So..... Dr. Lindsey (who has been Leigha's doc. since she was born) agreed to do that for Leigha. We have never been to the pediatric unit of Conway hospital, but I was pleased with the maternity unit there, and her pediatrician will be her dr. there. All I need to do is get Dr. Prasad's ok, but I don't see why not!! So, needless to say, I feel a lot better, and am very thankful that Leigha is doing so well. Honestly, being here isn't the bad part, it's being away from Bryan and Ian that's tough, and having 2 households to manage. Goodnight, Everyone!!
Monday, December 10, 2007 10:36 PM CST
Day +97
We got back from clinic at about 7pm. Leigha needed blood, platelets, and gcsf. She has not gotten blood in about 2 weeks, and they are now giving her washed blood. Her blood type has changed to the donors type, but her own blood has antibodies to the donor's type, so they are washing the antibodies from her previous blood type and giving her that for a month. Her WBC was 2.3(on Friday it was 3.6) Platelets were given last Thursday because they were 18, and today they were 15,so they actually held much better. Her nurse says that she looks good! The only news that was disturbing, and I have waited to post this journal, until I actually could comprehend the information, is this: When we were treated at MUSC, since we were 2 hours from the hospital, if Leigha got a fever, we would have to go to the local ER for cultures and antibiotic in case she was septic, then we would go to Charleston. Well, Duke does not want us going to the ER because of Leigha's immune system, it is not a good place for her to be. She said we would just have to get her to Charleston as quickly as possible. I thought about it over the weekend and realized that if Leigha gets a fever after 5pm (and don't they always happen at night!!) that we would have to go to the Charleston ER and then they would get us a room at the Children's Hospital. Deb, Leigha's NP, said that she would talk to Dr. Prasad and that he would have to call Dr. Kraveka in Charleston and see if they made special arrangements for bone marrow kids. She told be that he would not want Leigha in an ER for any reason, and that if that were the only solution, we might have to stay until her immune system recovers. When she told me 9 months to a year, I swear, I felt like someone hit me in the stomach. I know of families that have been here that long or longer due to complication, and I know that I should be thankful that Leigha is doing so well, but the thought of staying here until next September because there isn't a pediatric oncologist in my town, or because she might get a temperature and we can't get into the Children's Hospital in Charleston without going through the ER-!!!! We would not need to be seen at the Duke clinic, but just live near the bone marrow unit in case of infection or fever. I left a message for Dr. Kraveka to call me, which she promptly did, and I explained the situation and asked if special arrangements are made and she told me that they would want Leigha to go to the local ER(in Conway), and even if we went straight to Charleston, we would have to go to the ER there. So......the 2 drs. are going to talk when Dr. Prasad gets back from his conference. In the meanwhile, I'm trying not to worry about what ifs, but honestly, I haven't been home in 4 months. It's really not that bad here, especially when Leigha is doing so well, BUT I can only afford my apartment for 2 more months ($2300 per month), Bryan's work has been so good about letting him work days, so his family leave would last longer and so he could take care of Ian in the evenings and get him off to school, but the chief wants him back on his 24 hour shifts at the first of the year. What about my little boy? I don't want someone else raising him every 3rd day for a whole year. He can't stay here, especially not during school. I have not worked since April, so I probably don't have a job anymore, but that's probably not a huge loss other than financially. And just the fact that however patient we have been it was because we could see a homecoming in the near future. Leigha would miss not only all of 8th grade, but some of 9th grade, too. I'm sure we will work all of this out, but honestly right now it just makes me want to throw up. I'm going to get off of here and try to focus on the positive: eating midnight brownies with my beautiful daughter.
I know this may not make much sense, but what it means is: We may have to live in Durham until next September. And we really want to go home. :(
PS. Flash we got your gift cards today. Outback and Target. You know we will use these!! You always know just when to call, and just what to say. We love you!!!
Sunday, December 9, 2007 7:20 PM CST
Day +96
Friday was a good appointment. Leigha's nurse and also the doctor are pleased with her progress. Her pulmonary funtion test came back great, as well as a normal chest xray. The echo showed a normal heart with a very small amount of fluid which is not unusual for a transplant child. The immunology was not back yet, though she warned me that it would probably we very low. They will monitor that and the fluid at the 6month/9 month/12 month, etc. studies. She got platelets on Thursday, and ivig on Friday. We will be here for Christmas, and as far as after that, it all depends on the platelets resolving. The concern is that we are 2 hours away from MUSC. In the past if Leigha has gotten a fever, it has usually been at night. Well when you have a port or central line, anytime you get a fever, you must have cultures done, and start antibiotics. MUSC would have us go to the local ER (which didn't always turn out the best, since any emergency room is not the best place for an immune compromised person. ) Well, the nurse prac. told us that she did not want us to go to the er, we would have to go directly to Charleston, but I need to explain to her tomorrow, that even if we go to MUSC, if it's after 5pm, we would have to go to the ER before being admitted to the children's hospital.
Bryan and Ian were here for the weekend. It was unusually warm and nice! Friday, after appointment, we watched a movie, Cape Fear. On Saturday, I took Ian to the skatepark, while Bryan and Leigha hung out. Then Bryan and I snuck away for a couple hours to look around for a couple items that we had heard Leigha and Ian mention that they wanted for Christmas. We went to 3 places and each one of them had just sold out or had sold the last one 2 hours ago!!
Today, we slept in, had a big "breakfast" and then went to Duke Gardens where we walked for over an hour. Then after dinner, it was time for the guys to go home. The weekend went by way too fast and we were not ready to see them go!!
Bryan is going to finish with the library this week, and a friend found someone to install the water and air filtration!! So, hopefully everything will be in place in case we get permission to leave!! Oh, Bryan went to talk to the building inspector, but told me that when he got there, that the guy was so nice, he couldn't be upset with him. Anyway, the job will be done this week and it will be cleaned up then.
Tomorrow, we drop off labs, and only go in if Leigha needs blood products, which is very likely, but we will hopefully have Tuesday off.
Well, we have lots to do before bed! Love, Mary
Thursday, December 6, 2007 5:51 PM CST
I know I just did an extremely long update this morning, but this is what I've been wanted to share. I copied and pasted from my blog, so I wouldn't have to type it again. I would love to hear some honest feedback.
Don’t normally blog, but this is important to me
Current mood: vehement
I warn you, this is going to be a long one, and as I feel very strongly about this topic, emotional as well. Most every one of the people on my friends list are people who I know very well, and who are most probably aware that my daughter was diagnosed with leukemia in 2004, and after 2 1/2 years of chemo, relapsed after only 5 months of being "cured". She and I have been living in Durham, NC, where she received a bone marrow transplant, since August, and we are trying to get her well enough to come home. Home is a place that we literally ache to be, with Bryan and Ian, our friends, and our normal life, and a place where we should be able to feel safe, right?
When Leigha first got sick, we were in shock. Pharmacists, doctors, reporters would make comments that there were "so many" cases of childhood cancer in Horry County, but at that time, selfishly perhaps, I could only think about my own child. We would go to Charleston to MUSC sometimes for inpatient visits, and sometimes 3 times a week for chemo/checkups. Every time we went, we would meet another family from Horry County. Then, a close family friend, who was 2 months younger than Leigha was diagnosed 2 months after her, with the very same leukemia. (ALL) That was when I realized that something was seriously wrong. All the time we were waiting at clinic or stuck in the hospital, I spent researching. I talked to other mothers. I found that this "high incidence" had been going on since at least 1997 when 12 kids (that we know of)were diagnosed. In a county our size, we should statistically have 2 cases annually. I found out that one of the moms pushed to have a study done to raise awareness and classify us as an official cancer cluster site. I recently found out that we were, get this, 1/2 of a case away from being a cluster area. There have been so many more children diagnosed since then.
In my research, I learned things that I had never considered possible. I learned of the gross contamination at the former Myrtle Beach Air Force Base. I had no idea that it was a superfund site. I really didn't even know what a superfund site was. I attended a meeting where I was 1 of 2 concerned Horry County residents.Nobody knew about this meeting. (the notice in the paper would be in tiny print in the back of the newspaper and the date changed) The rest of the people there were DHEC, EPA, govt, and Grand Strand Water and Sewer. I found that there are, not were, still many contaminated sites at the base. Some have been cleaned up, some are in the process of being cleaned up, and some, if we really want to know the truth will never be cleaned up. I have unfortunately become familiar with words like VOC, TCE, benzene, groundwater contamination, just to name a few. Groundwater has been contaminated on several of the sites, it has migrated off of the AFB property, and this has been going on for over 20 years. I will just clear up the fact that I am not anti-military. My father retired from the Air Force. I know that I am safe in my country because of the military, and a lot of the contamination occured before the dangers of dumping these chemicals were even known. What I am against is that it was not made public knowledge. I should have had the choice of whether I wanted to live with a toxic waste dump in my backyard. I know that it is easier to believe that I am just reaching, or wanting to place blame because my child is sick, but these are facts that anyone can look up. It's public record, even though it's not broadcasted to the public. When you are dealing with a chemical that is measured in parts per billion, it is a dangerous chemical, and I firmly believe that our water supply has been compromised by this contamination. I know that would not be the best news to leak to all the tourists who go to the beach and assume they are swimming in clean water, drinking clean water, and breathing clean air. (By the way our air quality was in the 30's at the last testing, and that is out of 100, with 100 being the best) I also wonder if the people who will be buying those magnificent homes at Wither's Preserve will know the history of their property?
Anyway, here I am in Durham, reading Myrtle Beach online, and start following the latest outrage. Again, I am not anti-industry either, and I will just briefly summarize for anyone who wishes to look this up for themselves. AVX in Myrtle Beach knew in 1980 that they had a problem with tce (which is unsafe at 5 parts per billion) Rather that telling authorities, they chose to self remediate, drilling wells and excavating soil (which contaminated other areas) It was unfortunate that the contamination occured, but they chose to wait close to 15 years, all the while causing more contamination. When DHEC was notified in the mid 90's, they chose not to inform the public, who they are here to supposedly protect. So for all these years, people are breathing the vapors, factory workers are not the only ones whose health is at risk, they have tested a 10 block radius there are levels right now(who knows what they were before) in the thousands of parts per billion. And you will read in the paper that there is contamination for 10 blocks, but just remember, that is as far as they tested so far. They have no idea how large the plume is. The newspaper said that during the time that AVX was self-remediating they dumped this dangerous carcinogen into the sewer. Well guess where that goes? Into the ocean and eventually into our drinking water. Believe it or not, that is a brief summary. There are lawsuits filed right now. There is a meeting:
If you go
What | Community forums to discuss trichloroethylene contamination near AVX Corp. in Myrtle Beach
When | 1 p.m. to 4 p.m. and 5 p.m. to 7 p.m. Dec. 13
Where | Myrtle Beach Fire Department No. 3, 2108 S. Kings Highway
Who | Representatives of the S.C. Department of Health and Environmental Control will meet with area residents.
I really wish I could be there, but I urge any concerned Horry County citizen to attend. I feel again, like I should have been given this information when it was first found out, so I could have made the choice to live here or not. Most of the outcry I have heard so far has been about people worried about their property values. I own property in Horry County, but am mainly concerned about health issues, and feel that the residents should know when something that could cause so much harm is in the air and water.
I googled the Conway AVX and found out that the property there has groundwater contamination as well. If you make it to the meeting, give me an update...
Thursday, December 6, 2007 11:43 AM CST
Day +93
I have been meaning to update, but have found it difficult because there is a lot I want to say and know it will be a long update, so I keep putting it off, and getting more and more behind. Nothing has changed for the worse, with Leigha's health, so I don't want everyone worrying about that, but there are so many things going on, and I try to focus on the positive, but every now and then I just want to let loose, so to speak. I keep everyone updated as best I can, but Leigha does not like to broadcast her hardships and problems, so a lot of what she is going through gets "edited" or omitted. I will just say that she is a very strong, very tough, amazing person I am in awe of. We have been praying more together, and I have been doing some personal soul searching, but enough about me for now!!!
We had Tuesday off from clinic. We purchased a shower liner. (Sharon King gave me the idea, when she suggested a vinyl talbe cloth, but the shower liner was cheaper!) and went to the 1:00 showing of This Christmas. There were only 3 other people in the theater and they weren't anywhere near us, so Leigha took her mask off, and we really enjoyed being out!! We came home, napped like little old ladies, and then did our exercises. Bryan taught Leigha some exercises a couple weeks ago and we have been doing them together each day. I can really see a great improvement in her strength and balance.
Yesterday, she had her echo done. Then her pulmonary funtion test, and her chest x-ray. We will go over results next Friday, but if something were really wrong, I feel like they would have let us know right after reading the results. After the appointments, we came home and napped like old ladies again. Then I ordered Outback to go. What I am about to say is one of those things that happen that just makes you have re-newed hope in people in general and faith that God is looking out for you. I usually order Leigha 2 small lean steaks, because if I order 1 big one, it is not well done in the center. I have been using my credit card every week at Outback, at Harris Teeter, for her online shopping, and birthday, gas, pretty much everything. I knew I was probably getting close to the limit, and I had spent my cash "allowance" on the Christmas tree and decorations last week. Anyway, I had $32 to last me until Bryan gets here. So, I ordered Leigha 1 steak, and got some wings for myself, and knew I would have plenty to cover the food, plus parking $$ for the rest of the week. When I got there, the person who came to my car only charged me for the wings, so I told her there was a mistake, and she said, "No mistake, we're getting Leigha's Outback special". It's not that we haven't had many many nice things done for us, but I just felt very emotional and it was all I could do not to start blubbering like an idiot right there.
I drew labs today and dropped them off. A np called me from clinic and these are Leigha's results from Mon.: Hemoglobin went from 10.5 to 9.(no transfusion needed) WBC held at 3.3(they might do gcsf tomorrow to get us through the weekend) Platelets were 12 on Monday and she had a transfusion and today they were 18 which means whe didn't lose them all, it seems like they are slowly but surely improving. I asked if we could hold off until tomorrow on platelet transfusion since they are at 18 and she gets transfused at 20 but she said we need to come on in. That means that I need to wake Leigha up and get moving soon or we will never get there on time.
I wanted to go over some things that are going on at home, but one thing especially will take too long, so I'll save until next time. I will say that Bryan has been having some bad luck lately though. Just off the top of my head: he got a speeding ticket coming here last week. He was the middle car! He's having a hard time getting some last minute construction done in our last room we need to get ready for Leigha's and my homecoming. (whenever that will be) Anyway, the sheet rock men worked last week and were coming back today to finish up. Bryan cleaned up the yard where the old building material was thrown out the front yard. He put everything on a trailor to be hauled away at the completion of the project. Well, when he got home from work yesterday, there was a note from the building inspector STAPLED to my house, saying that he needed to have his yard clean in 10 days or would get a ticket. It's just ironic, that you can drive down the street and see many yards who could use a little cleaning up and he chose to staple a notice our house when Bryan is working so hard to get everything in order. He is also having some battles with the attendence lady at school over Ian's 8 absences (which we cleared with the principal, who has always been more than understanding of our situation.) The attendane lady knows the situation, too, but told Bryan that Ian could be held back if he misses 2 more days. He is just feeling a little overwhelmed by everything on his plate and feeling like no matter how hard he tries, it's not enough. Plus, it is probably even more difficult to be the parent that has to stay at home and hear updates about your sick child over the telephone, when you really want to be there.
Wow, I really need to go!! Please, continue to pray for Leigha and also for a sweet little girl named Mary who is really in need of a miracle. Also, pray for our little friend, Amber, to work out her "bumps in the road", so she can get out of the hospital and start enjoying life like a little 8 year old should. While you are at it please just pray for all of these children. It is especially difficult this time of year, and it's really taught me a lesson. Normally, I would be worried about getting a good parking place at the mall, or finishing shopping, and there are so many people who are facing terrible hardships that are unimaginable. I feel very fortunate to have my child, whether we are in Conway, or here!! Thank you. XX00
Monday, December 3, 2007 0:03 AM CST
We have had a good weekend. On Friday Leigha got platelets, gcsf, ivig, and the medicine that is for the GvH which I have never learned to spell but is something like dicluzameb. She also had pentamadine and asked her nurse to hold her benadryl (pre-med for blood products and it makes her very sleepy) until she had a chance to meet with Dr. Prasad, because normally by the time he comes to visit her, she is passed out or loopy. He was happy with her progress and said that in looking at the trends of the blood work, it looks like things are getting better. He gave her a few more freedoms. She can now order curbside takeout from Carrabba's if we let the manager know of her special dietary needs. Also, get this, we can go to Super Target or Walmart at midnight as long as the store is not crowded, as long as Leigha wears a mask. Also, we can go (during school hours) to the very first showing of a movie, as long as Leigha wears a mask and their aren't lots of people in the theater. I told her to keep asking him questions since he was in a good mood, but when we asked about going home, he said "Don't even talk to me about this yet." But we were happy with what we got!! He said that going home would depend on her blood counts resolving, and also as she is coming off of the steroids, the GvH or antibody problems could re-occur. All in all, it was a good check up, but kind of sad, because it was Heather's last day. She is the np student who has been following Leigha since we got out of the hospital. She is very kind, and patient, and is going to make a wonderful np, and Leigha and I will miss her alot.
Bryan and Ian were here this weekend. It went by way too fast. Bryan has taught Leigha some exercises and along with walking (we have started incorporating the flights of stairs into our walks) Leigha has become noticably stronger. We went on a long walk yesterday, and while Leigha and Bryan were going up and down the stairs, Ian tried to teach me some tricks on his board. I was going down the steepest hill I had ever gone down, and was enjoying the ride, until he thought it would be cool to come running up behind me and grab my jacket (he knows that I have stopping issues) Anyway, no broken bones, but I wish Bryan would have been filming because it was definately an America's Funniest Video moment. (or AFV, if you will-ha ha)
Also, Ian and I were coming back from Raleigh on Saturday and noticed all the cars with Christmas trees on the roofs, and I broke down and bought an artificial tree for the apartment. I know I said that I was not going to go commercial this year, but I had thought we would be back in Conway for Christmas and the thought of being here for Christmas without a tree was depressing! At home, we usually get a real tree, but Leigha can't have that this year. Also,at home we use the Hallmark ornaments that we have been collecting since our first Christmas together (1990) and we each get a new one every year, of something symbolic or special to us. We also use the multicolored lights and string popcorn. This year, we got a 6 1/2 ft. fake tree, and I got blue and white lights and all the ornaments are blue, green, or teal. It was nice decorating the tree together, and after we finished, we watched our traditional night of the tree movie- National Lampoon's Christmas Vacation. We also decorated stockings and Bryan hung them under the Happy Birthday banner.
Tomorrow we have to be at the clinic very early for the beginning of Leigha's 100 day studies. They start them a little bit early, because some of the tests take awhile to come back. Tomorrow is when she gets her big blood draw. I think the pre-transplant blood draw was something like 21 vials!! I am so thankful that she is doing so well and that we have made it to this point where we can even be thinking about coming home in the hopefully near future. I do need to call tomorrow and renew our lease so we don't end up homeless, and I am going to post this right now, because I am on the old laptop and it is doing crazy things and I'm scared I'm going to lose this whole update, so please excuse the fact that I didn't proof read, I just don't want to have to retype all this. Night!
Thursday, November 29, 2007 6:21 PM CST
Day +86 (I had to look and make sure that was right-I really don't know how that much time has past!)
Well people, I'm afraid that you will not be getting an update from Leigha tonight. I've been trying to hold off on the update, and thought that tonight would be the night, but she fell asleep in her chair doing homework. (Or doesn't want to update or do homework so bad that she is faking) Either way, you are stuck with me again. But I promise not to ramble on and on about my panties and such. I'll stick with the facts:
Lets see. Tuesday, we got Outback to go. That was our excitement for the day. We had the whole day off from clinic. On Wednesday, Andre called and said that Leigha's platelets were 22. She had gotten platelets on Mon. when she was at 13, and 2 days later she was at 22. (not a big increase, but at least she didn't lose them immediately ) Her hemoglobin had dropped (but not drastically) so she got 2 units of blood and her wbc was 3.3, so no gcsf) Last night, we read our new books and watched The Best of Will Ferrell for our entertainment. Today, platelets were 13 again, and although I was hoping that they would hold above 20, she did make it 3 days w/o needing platelets which is an improvement. She got gcsf to boost her white blood count which was 2.9, and she got platelets today. Her platelet antibody test showed an improvement, so hopefully that is resolving itself!! We still may be home for Christmas, but if not, it won't be the end of the world. We also ran into Leigha's respiratory therapist friend, Jack, who got Bam Margera to send Leigha that deck awhile back. Also, we decided to just go crazy and eat out again tonight. I figure all that red meat has to be helping her hemoglobin a bit, and even though we don't actually go inside the restaurant, we get to see different scenery in the car. Also, when Leigha and I got home, she had a surprise package full of goodies from her (I don't want to hurt anyone's feelings here, but I have to tell the truth) favorite hospital nurse, Karen. I say hospital nurse, because her favorite clinic nurse is Pam. As much as Leigha loves her new Duke caregivers, she misses those 2 like crazy!!
Well, I have tried to stick to the facts today but I do have to say one little thing about the items Bryan got me last week. Fuzzy socks. They are very underated. I have never personally had a pair until recently, but mentioned that I may want to try them out, because Leigha loves hers so much. I have found that when you are wearing fuzzy socks you truly do not want to leave the house, which is a good thing for us, cuz we're pretty much not allowed to!! I now have 4 pairs of fuzzy socks, so, thank you Bry, once again. And thank you for letting me drive your big old truck while you drive my noisy broken car and try to have it fixed even though the car-fixer-nazis want to charge you $600 for something that should be under waranty.
That's all for tonight. Stay warm and seriously, everybody should have at least one pair of fuzzy socks. XXOO
Monday, November 26, 2007 10:52 PM CST
Day 83
First I will update medical happenings. We are still busy being thankful for the good results on the chimerism, which is the test that shows how many cells are Leigha's and how many are the donors. She was still at 98 hich is the best possible result! Her counts are still not the best, but at least we know that the donor cells are still doing their thing, and that is not the reason for the blood counts being low. We found out on Friday that Leigha has developed antibodies to her platelets, which explains why they are not holding. Her platelet count on Friday was 19 (measured in thousands) and although that is still low, it was better than it has been lately.(Normal platelet counts are 150-450 with spontaneous bleeding a possibility at 20) Today, when I dropped off her labs, the platelets were 13, so she had to get platelets again and they did the antibody test again to compare ratios. Her dr. has decided to see if this will resolve itself as the red blood antibody issue did, but the 1st course of treatment would be steroids, which she is in the process of coming off of right now for the second time and they don't want to have her on steroids any longer than necesary because there are risks that go along with longterm steroid use. Anyway, hopefully it will resolve itself. Leigha's np said that the 100 day studies have been scheduled, but we would not be able to go home until the platelet issue is resolved. As much as I want to go home, I feel better being near Duke until this and her white cell count are better. So, we may be spending Christmas here in Durham. Leigha said to leave her Happy Birthday banners and decorations up for Jesus, just in case we are here.
Speaking of Christmas, in the past when I heard people complaining about the commercialism of the holiday and how crazy it is to spend money that you don't have on a bunch of crap that people don't even want or need-that people who did this were missing out on the true meaning of Christmas. I always disagreed that you could have it both ways. I thought it couldn't feel like Christmas without Christmas Eve candlelight service and baking a cake for Jesus, but also without all the piles of Christmas presents that I ended up paying off for months on the credit card. I would make lists and usually by Thanksgiving I would have all my frantic holiday shopping done (even if I didn't pay off the credit cards until the next Halloween) and then I would have time to enjoy the holiday, baking, relaxing, decorating, looking at lights, and watching all the movies that have become a tradition in our house. (I'm afraid we aren't the "It's a Wonderful Life" or "Frosty the Snowman" kind of family, but we have a few special Christmas movies of our own that we watch every year) Anyway, I truly see now how unimportant all of those piles of presents are and all the stress that goes along with acquiring them. Neither of the kids (or me) can name what we got for Christmas last year, but we can remember every year going to candlelight service on Christmas eve, coming home and them putting on new pjs and all of us reading "The Night Before Christmas". What I'm trying to say is, that I am ok with being here, as long as my family can all be together. I'm not saying that I won't miss being able to go to church, or have everyone come over for dinner, but I know I can probably order the kids a few things online and get National Lampoon's Christmas Vacation from Netflix and be content!
I guess I am making up for not updating yesterday! I have lots on my mind tonight, but it will have to wait until another time. I would like to say that Leigha and I had our night out last night. It was the very first time since August that she actually set foot in an establishment other than the hospital, clinic, or our apartment. We went to Vertical Urge which is next to the skatepark that Ian goes to when he comes to visit us. I can't even tell you how nice these guys are. They have hooked Leigha up with posters signed by pro skaters, dvds, t-shirts, stickers, and last night even stayed after work so she could shop when the store was not officially opened for business. We tried to hurry, but ended up spending an hour, and she got some clothes and a really nice jacket. I also bought a jacket which I desperately needed, and Bryan had threatened that if I didn't buy something for myself, he would personally go to K-mart and get me a new wardrobe. Now, I'm not dissing K-mart,or my well-meaning husband, but he will give me a chance to buy something that he thinks I need and if I don't, he will buy it for me, and let's just say....he has a talent for finding the unusual. He has bought me a hideous bathrobe once (it ended up being my favorite, though) and he always buys old lady slippers, and these really gnarly track suits, and he once bought me the ugliest shoes I have ever seen (and my shoe size didn't help anything) I wore those shoes at first so I wouldn't hurt his feelings, and I kept wearing them because they were the most comfortable shoes I ever had!! I even came to terms and forgot how ugly they were til I'd notice people staring at my feet!! Anyway, I have to say that last time Bryan was here for Leigha's b-day, he told me that if I didn't buy new socks (he can't stand holes in my socks) and panties, and new bras, that he would do it for me the next time he came to Durham. Well, I meant to go to Vicoria's online, but didn't, so Bryan went out last Saturday and came back with some really decent stuff. (He admitted later that he asked some chick that was buying panties to help him!!!)Anyway, I didn't mean to get sidetracked and share so much personal info--I'm just excited to have a new jacket and underwear and that Leigha and I got to go out together!!! Goodnight, and I'll try to talk Leigha into doing the next update-she is entertaining, but doesn't tend to ramble as much as me!!! XXOO
Saturday, November 24, 2007 11:20 PM CST
Day +81
Today was a good day. After I did Leigha's meds, Ian and I spent the afternoon together. It was good for me to get out of the apartment for a few hours, because I truly am developing agoraphobia issues from being in isolation so long! I guess you can probably figure out where he wanted to go!! (skating) Bryan and Leigha spent time together at the apartment. When Ian and I got home, we all bundled up and finally went to the playground. Guess what? Bryan managed to squeeze through the small slide and we got pictures! I guess we owe him an apology! Also,an apology for telling him about the C-Rob and Winnie the Shizzle thing we made up! Ian skated down the slide a few times and we came back and watched our netflix. Tomorrow is Leigha's special shopping spree she is looking forward to. I will give details tomorrow, but it involves some really nice people at Ian's favorite place to go in Raleigh, who are letting Leigha shop after they are closed. How cool is that? She is going to buy some clothes with her b-day cash. Bryan made me promise to buy some clothes-I packed to come here in July, so I realy didn't comprehend the fact that I would need a jacket and pants and long sleeve shirts,and even if I would have packed winter clothes, they would all be too small from all the eating and lack of exercise! Bryan and Leigha have started calling me Dobby since they saw the holes in my socks! Well, goodnight everybody!!
Friday, November 23, 2007 10:26 AM CST
Day +80
I hope everyone had a wonderful Thanksgiving. We did! Bryan and Ian were here and we ate a huge dinner. It was challenging to make all of my Thanksgiving dishes in this kitchen, but I managed to pull it off, it just took a little longer that usual! Afterwards, we took a walk around our little neighborhood and watched the Big Lebowski, which is where Leigha's puppy got his name (Dude)
On Wednesday, I took Ian skating. It was nice to spend time with him and to get out of the apartment for awhile. He came to NC in Novemember and only packed flip-flops. So, luckily, I found a pair of skate shoes on sale and watched him for a couple hours. Then I took Leigha to clinic where she got platelets and exam.
Now, for the great news: The chimerism showed that she is still at 98% donor cells which is what we were hoping for. The platelet test showed that she does in fact have antibodies which is why they are not holding. Her body is eating them up! Her platelet count was 19 today which is better than they have been, and for now they will not treat the antibody issue, but retest on Monday to see how the ratio looks. She will also get gcsf today for her white count. Her neutrophil antibody test came back negative, so that's not why her white count isn't holding. All in all we consider this to be good news. Today, she will get platelets, ivig, gcsf, and the one I can't spell that she was on for the gvh that she has to come off gradually.
Tomorrow, I will post the results on the "Bryan vs. the slide" experiment. Leigha thinks that the slide looks very small and that her dad would probably get stuck in it, and we have been meaning to test her theory, and plan to do so today. We had Bryan going so bad last night!! You know how Leigha and I ponder the deterioration of cartoons, and why Monopoly has to be automated with an atm card and no money/banker, and why Operation doesn't have the same body parts (they actually have you removing the "texting thumb") Also, we wonder why Kentucky Fried Chicken has to be KFC and K-mart has to be Big K,(you get the point) Well we told Bryan that Winnie the Pooh had a new cartoon where Christoper Robin is called C-Rob and he dresses like a gansta with baggy pants and boxers, and he believed us!! You should have seen the look on his face, it was hilarious!!
We are going to eat and then go watch Bryan get stuck in the slide!! Thanks for all the prayers and if you get a chance, sign Leigha's guestbook.
PS. Leigha's birthday is still going on. Bryan brought some things that had come to our house in Conway. Uncle Moo and Aunt Stacey sent a big bag of stuff that Leigha loved (art supplies, Hollister, Aeropostle, and silly string stuff-oh we are going to blast Bryan with silly string if/when he gets stuck in the slide!) Also, there were cards/presents from Beasy and Jo Jo, Tracey, and lots of Leigha's Happy Days friends, and Kaylee, Kamron, Dickie, and Kim. Thank you everybody!! XXOO Mary
Friday, November 16, 2007 7:59 PM CST
Day 73
We got up early and were at clinic first thing in the morning. Leigha's nurse wanted to do her platelets before IVIG (platelets take 30 minutes and ivig takes 2 hours) There was some problem getting the platelets, so we kind of just hung out for a few hours, but we were finished with everything at about 3pm. Leigha's platelets had gone from 21 to 18. Her red blood count barely dropped and her wbc was 3.3. Dr. Prasad says that the only one he is concerned about is the platelets and he ordered a test to be done on Monday to see if she has the antibody thing going on with her platelets. He ordered a chimerism that was drawn today and if you remember that is the blood test to see how many cells are donor and how many are Leigha's. The results won't be back until Friday. She had 98onor cells the last time and that's what we want to see this time. This test is normally done with the 100 day studies, but he's doing another one early because of the platelet issues. Depending on the results, he said we could do a bone marrow biopsy next week, too. He said that it is normal to worry after having cancer twice, undergoing and surviving life threatening treatment, and all that Leigha has been through to worry about counts and bone pain, and teenagers especially worry about these things, but lots of the time the worry is unfounded. So.....please pray as hard as you can for good results and Leigha's speedy recovery from all this so we can come home and just be healthy!!
Dr. Prasad did say that Leigha looked really good and he cut her steroid down. She will soon be off the solumedrol, though she will have to take oral steroids for maybe a year. The solumedrol is the one that causes the bloating and weight gain and the "moon face". I am not on steroids, but am somehow suffering from weight gain and bloating and it is going to get worse before it gets better. I can lose weight really well with the South Beach diet, but I actually have to begin the South Beach diet for it to work. And everytime I chose a day to begin, I recieve some sort of sign that it is not the right day to diet afterall. Today, the sign came in the form of a package from Karen Fallin and family full of yummy things to bake and some things to make it seem a little more like Thanksgiving here. And, even if I could have ignored that as a sign, Bryan called with further proof. Amy dropped off a bunch of goodies at our house in Conway for Bryan to bring to us if they get to visit. He didn't tell me exactly what it was, so he may be planning on keeping some for himself!!!
Leigha's sense of humor was back in full force today. She has really been in rare form today. I admit that I have a bit of a hearing problem, which happens over years of loud music, motorcycles, and shooting guns,(that made me sound like a redneck, didn't it) but anyhow, she asked me when I was going to get something she needed from the store and I told her that it was hard to shop in our situation, and she told me she knew of something harder.....my hearing. She will be in the next room and say something to me and I'll make her repeat it 3 times and then I'll have to walk in the room and have her say it again. She told me that she is going to get me one of those over the hill "bugle thingies" that old people hold up to their ear, so people can yell into it and be heard. She said that I probably won't hold out til my 40th b-day though-I'll have to have one a few years early. I'm glad her sense of humor is back, even though I happen to be her only target for now.
Well, medicine time and then it's Netflix marathon, eat lots of stuff that Karen sent night. Goodnight!XXOO
Thursday, November 15, 2007 5:23 PM CST
Day +72
I left Leigha's update up as long as I could, because who knows when she will grace us with another one! If you missed it, you can catch it on the journal histories.
Yesterday, Leigha had to go and get 2 units of red blood and 1 unit of platelets. Her wbc had gone from 1.6 to 3.3 with Tuesday's gcsf. We saw Andre who is an np who works with Dr. Prasad who we had not seen before. It's hard to choose a favorite nurse or np, because I haven't met one that wasn't good here. We were going to get Outback to go like we usually do on Mondays, but Leigha was craving it last night. We ended up being in clinic until after 7:30 pm and one of the rules is that we order right when the restaurant opens and the manager oversees the order. It was too late for that, so we ended up getting it tonight.
Today, I dropped off labs at the North pavilion like I usually do. It was cold and windy and rainy, so I made the judgement call to leave Leigha at the apartment rather that take her out in the weather. It only takes me a few minutes and she had her cell phone right beside her. Everyone has forbidden that Leigha gets left alone, because of all her meds and such, and I usually listen to every word they tell us, but she is a teenager and I know by now that none of her meds cause her to be disoriented or unable to watch herself for 10 minutes. Anyway, as I pull up to drop off the blood, who do I see walking up the sidewalk, but Dr. Prasad and Dr. Szabolcs. Dr. Szabolcs offered to take Leigha's blood and drop it off for me and I exchanged quick hellos and left before Dr. Prasad could ask where Leigha was. I know he will ask me tomorrow and I'll have to tell him, but it figures I would get busted, doing the one thing I'm not supposed to do!! I do look forward to meeting with Dr. Prasad tomorrow, as it will be our first time seeing him since he was in India for the past two weeks. I definately want to address the platelet issue. (Today Andre called to tell us Leigha's wbc was 4.2, her red was over 12 after getting 2 units of blood yesterday, but her platelets were 17 yesterday, and after getting a whole unit of platelets they were 21 today) I can't seem to get an answer on why this is happening, probably because it could be many reasons. I looked up some things on my own and found that platelets can drop due to certain medications including antifungals (which Leigha is on), or antibodies, which basically means that the platelets are recognized as something that shouldn't be there and get broken down. When I asked our np on Monday, she said that antifungals don't affect platelets and the antibody thing is more likely with red blood cells and very rare in platelets. I just need to quit speculating and see what the Dr. has to say tomorrow. I am very thankful that Leigha has such a great team of doctors. We both have grown so attatched to them. I looked up Duke pediatric bone marrow team a minute ago to see how to spell Dr. Szabolc's name and reread the bios on the team and it makes me feel so much better being here in their care. I will post after our appointment tomorrow.
As thankful as we are for this place, it is certainly feeling like time to go home soon. I heard a Christmas song on the radio 2 days ago and it really got to me. We have been here over 3 months! On one hand I'm thankful to be here and will be nervous to leave the security of Duke, but on the other hand, I can't wait to take Leigha home to our own house. Even though there will still be heavy restrictions, I think once she gets over the anxiety of leaving here, it will be very healing emotionally to be home. I know that I am really cool and entertaining and great to be around 24/7 but she might not mind a few minutes here and there without being stuck in the same space with me!! And it will be good for me, too, because like I said, I try and do everything we are told to do. We only go to clinic and straight home (Leigha wears a mask) and we drive up to Outback at exactly 4:30 and get our food brought out to the car. I try to go to the grocery store when it's not busy so I don't bring any bug back to Leigha. I had to go get my flu shot at cvs on Tuesday and I really felt weird being in public. I think I may be developing some sort of phobia, seriously. I used to laugh a germophobic people (I know, not nice) and I'm practically worse than Michael Jackson, (not in the pedophile way, but the germophobic way). Hopefully, I will outgrow that when I get home, and it will not be added to all my other eccentricities!! I guess it just comes from being separated from the "real world" for so long. I rarely talk to anyone other than medical staff and Leigha and when I talk to Bryan on the phone, I've been mean to him the last two times for no reason, except that I miss him so bad if that makes any sense. Well, thanks again for the free "therapy". I truly didn't mean to ramble. I usually erase the whiney portion of my entry and feel better for writing it, but I'm going to leave it as a reminder not to whine!
Love, Crazy Mary
PS. Right after I wrote that I never talk to anyone, my phone rang and it was my Dad calling with some very good advice. Thank you, Daddy!!!
Sunday, November 11, 2007 7:08 PM CST
Hey everybody
I know it's hard to believe, but
Yes, I am actually updating!
Haha I figured it had been a while so anywayy
Umm I've been doing good, transplant has been going well, I think that they're happy with how good it's going. They've cut back my clinic days alot. I only have to get check ups Monday and Friday and we draw labs only Monday and Thursday. The rest of the days we have off! It's awesome, especially the weekends, sleeping in haha.
I don't have to do those creams 6 times a day anymore because the GVH skin thing is better, which is very cool. hah. And I might be going on oral cyclosporine instead of through the IV maybe in the next week or so, which would be some real progress towards going home and stuff. They're also cutting back on the steroids, which makes me verrry happy because I really am NOT enjoying the puffy chipmunk face thing. lol
Well now that I got all the medical stuff out of the way haha
I had a really good Birthday. Ian and dad came up that week so it was really cool that the whole family was there to celebrate. I had a big breakfast and got a bunch of cool stuff! I got a digital camera/video camera, a deck signed by Chet Childress (Nike Team skater) A skate vid signed by the whole Nike team, some popcorn (don't ask lol) and a gift card to Hollister! Then we had a big chocolate cake that I had wayy too much of and we mainly just chilled around the apartment. It was a really awesome Birthday and I had a lot of fun! I especially enjoyed Dad and Ian being there, I really missed Dad (and like I've said before, I guess I'm required to say I missed Ian too) so I always have so much fun when they visit. Ian gets old after about a day but the good outweighs the bad. lol
I got soo many great bday gifts and cards from so many people, I'm in the process of writing Thank You's to everybody! I don't want to name any names of here because I know I would forget to say somebody, but I just want to say thanks for everything to everybody!!!! Mom would check the mail everyday and people would stare because of the sheer volume of cards that we'd get!! I've been online shopping alot lately because I got a bunch of gift cards! Again, Thanks to everybody!
Umm Mom's been doing pretty well with her 'myspace addiction' haha. I mess with her because she used to get on me for being on myspace a lot but she understands the draw of it now I believe. Haha. I'm watching Family Guy right now with mom, the new one. It's pretty weird lol. I think we're going to like watch Wizard of Oz or something afterwards. Haha it's kinda cool just chilling around all the time, we don't really have to do anything except go to the doctor every once in a while.
When I think about it, I feel kind of lucky. I mean, I could have it so much worse, I'm doing so well with transplant. I'm in an apartment eating and feeling good, and there are kids that can't even eat because they're so nauseus or they're stuck in a hospital room bored to death and it's like I have it kind of good compared to some people.
Well, I can't think of anything to write about, I know I'll think of about a million as soon as I post this, because that's how I am, but whatever haha. Sorry if my update isn't as filled with my amazing hilarious humor as it usually is, I'm kind of tired and I can't really think of anything exciting to make fun of. Hehe But anyway I guess I'll sign off now!
I totally appreciate all the prayers that you guys send everyday, I know that it's a big part of why I'm doing as well as I am.
I love reading the guestbook entries, so please keep writing me!!!!!!!!!
Peace Dudes :p
~~~Leigha~~~
Thursday, November 8, 2007 10:11 AM CST
Day 65
Two updates in one day!! I just had good news to share. The phone just rang and it was the dermatologist that I went to see last Thursday. The spot above my eyebrow was called benign lichenoid keratosis and the other was called something else that meant inflamed hair folicle. The good news is: no skin cancer. Neither place requires any more attention. Thank God!!! I went in Leigha's room right after the phone call, to disconnect her cyclosporine and I told her the news. She was half asleep, but woke right up when I told her and smiled the prettiest smile and told me that she had been praying for me every single day with her regular prayers and extra prayers, and since it had already come true, she informed me that her birthday wish was that I would be ok. I am so touched and grateful and lucky to have her for a daughter! Just when I think I couldn't possibly love her anymore than I already do-I truly can feel even more love in my heart today!!! We are going to have a girl's day with no clinic visit today!!!Later.
Wednesday, November 7, 2007 11:18 PM CST
Day +65
It is technically day 65 since I am updating after midnight. Today we went to clinic where Leigha received GCSF and platelets. We only do cyclosporine levels tomorrow. Friday is our big day where we see the dr and she gets her ivig and whatever other blood products she may need. The last type and cross supposedly was the same, with no antibodies, but today the lab had done some testing and there were antibodies found. What that means is that she may be needing more red blood or it may resolve itself. She felt good today. Her steroids are being reduced every Friday, but are still at 17 and given iv. The steroids have her eating quite well. We broke down and got Outback tonight and it was really good!
We got online and ordered The Notebook and The Stand with her Barnes and Noble gift card she got for her birthday. She has started trying to write her thank yous, but we need to do them in the afternoon or morning, because at night, she nods off from the medication. We are like 2 little old ladies living together!!
There were more birthday greetings in the mailbox today. Thank you everybody. Thanks Paula and Gary and also to Grandpa Aaron for the cash. She is saving her money for something significant. She will probably be one of very few teenagers to start their own business. Also, thank you Lisa G. for the huge box of cupcakes-that's the reason I have been frantically typing on the computer for hours!!
Well, I'm going to go brew some Earl Grey and watch some Girls Next Door with Leigha- Hef is turning 80!!
Love, Mary XXOO
Tuesday, November 6, 2007 9:50 AM CST
Day +63
Yesterday, Leigha got blood and her platelets were right on the border of needing more, but they are going to hold off until tomorrow. Her wbc was 4.4 which is considered "normal", but Leigha had just gotten gcsf, so I was expecting it to be a little bit higher. They lowered the number at which they give gcsf from 5 to 3. We have today off, no labs or vistit. Tomorrow, I will draw labs and drop them off and we will only go to clinic if she needs any blood products. The np that we see told us that platelets sometimes drop during gvh and even though Leigha's rash is gone, her body still has some gvh going on. They drew blood to run some viral tests, even though she is not having any signs or symptoms, it will rule out that as the reason for the low platelets. She said at this point they are not really worried about her counts, because there is a reason for everyting that is going on. Leigha was also complaining of bone pain yesterday. That is a side effect of the gcsf, that the bone marrow is working overtime, but it was also what Leigha went through right before she was diagnosed both times with the leukemia, so she associates bone pain with cancer. The np said that the gcsf could definately be the cause of that pain, but they keep all those original dx symptoms in the back of their mind for the first 5 years after transplant. 5 years!!! Just another reason we can't worry about every little count and hurdle that comes up. Leigha will have her 100 day studies done next month and with good results we may be able to come home. So, that's what we are focusing on.
I'm glad that Ian was here all week, because there were 4 cases of chicken pox and several cases of MRSA in Ian's school and other Horry County schools. I know that neither of these are new things, but I have to be so careful because of Leigha's immune system and I am concerned about Ian being exposed and coming up here, so we may have to wait until some of this blows over. What worries me about the MRSA is the attitude that people seem to have about it. I would normally not alienate myself or my family from someone with an illness as long as it is safe to be around them, but right now it is not. And apparently whoever is in charge of deciding when kids with MRSA can go back to school has not sat through Debbie Borst's blood bourne pathogens class, because 1 day of antibiotics is just not good enough, especially since so many people don't know any better than to discontinue their antibiotics as soon as they feel better and save them for their next cold-don't get me started on that! Anyway, I'm just super-aware right now of how many people go out or send their kid to school or go to work sick, just because it's inconvenient to themselves, when it can be life threatning for an immune compromised person.
On a lighter note, after clinic yesterday, we came back to the apartment, did the chicken dance a few times (that was so cool, Flash!) and chilled out in front of the tv all night! We have a similar plan for today. The only thing I have to get accomplished is having the maintenance people come replace my dishwasher, which I discovered is leaking water under the island-(not good) and also I need to figure out where to get my mandatory flu shot. They gave them on the bone marrow unit yesterday to the family members of the kid's, but I forgot!!!
Many, many heartfelt thanks to each and every person who participated in Leigha's Ride. And to all the people who worked so hard to make it such a huge success. You have taken so much of a burdon off of us, you have no idea!!!
I hope I didn't sound too whiney in this update, I can't stand complainers, but sometimes I have so much going through my mind that if I don't let some of it go, I truly may have some sort of mental break down!! Thanks for being my free therapy!!! XXXXOOOO
Monday, November 5, 2007 12:03 AM CST
Day+62
Quick update today. We need to go to clinic and get blood and maybe gcsf. Leigha had a wonderful birthday. Thank you everyone for all the cards and birthday greetings. Yesterday, when we took our walk around the apartment, we stopped by the office and there was a package from Beth that had been dropped off Sat. with multiple goodies and decorations which Bryan hung up before he and Ian went home! Leigha knows that she wants to order The Notebook from Barnes and Noble with her gift card. We are adjusting to life without Bryan and Ian for awhile-it was nice to have them here for a whole week and now we miss them more than ever. (I don't think that Leigha would admit to missing Ian, but whatever) For those who were curious about our b-day dinner: We had chicken, mac and cheese, garlic knots, mandarin orange slices, and peas and onions. Got to rush to clinic-we are running a bit behind (as usual) Love, Mary
Saturday, November 3, 2007 6:36 PM CDT
Day +60
Happy Birthday Leigha!
Today was Leigha's 14th birthday. After infusions, we went back to sleep and had a late "breakfast" at noon. Leigha wanted sausage, eggs, pancakes, and orange rolls, with orange juice, so that's exactly what we had! She got more birthday cards in the mail. She got money from Beth Mevissen, Fred and Karen Wolf, and a Hollister gift card from Stefanie and Emilee and Preston. We took a nap after our late breakfast and got several birthday telephone calls, and also updates on Leigha's Ride, the poker run that was held for Leigha today. We will try to post pictures and details later. Leigha opened her gifts and we just hung around and enjoyed the day. We took a walk around the apartment complex and are going to watch a movie in a minute.
Yesterday, we were at the clinic for a few hours, but not as long as we thought. Her hemoglobin held at 8.2, so she didn't need blood. She got gcsf which we weren't expecting-her wbc had fallen to 4.2. She got platelets-hers have been slowly dropping and they wanted to give her some for the weekend. She got her ivig which takes 2 hours, and she got her pentamadine breathing treatment. Her counts could be dropping because of the gvh, even though her rash is better, it is still going on. She saw Dr. Martin since Dr. Prasad is out of the country for 2 weeks.
While we were at clinic, Ian and Bryan went to the Nike skate demo. Bryan filmed it for Leigha and me to watch. He filmed Ian skating (he dropped into the bowl for the first time!) and the Nike team skate. Chet Childress was really cool and signed a Black Label board for each of the kids. Lance Mountain was there, but must have had an injury because he didn't skate. The entire Nike team signed their new video for Leigha and signed Ian's helmet.
Thanks for all the birthday wishes and prayers!! Love, Mary
Thursday, November 1, 2007 11:27 PM CDT
Day 58
We had a wonderful day yesterday!! Leigha did not need blood or platelets, but both were right on the verge, so tomorrow will be a HUGE day at the day hospital with IVIG, the infusion for her gvh that I don't know how to spell, blood (the type and cross showed that she is no longer O-, she has a brand new blood type-which means that the donor cells must be working pretty good!), and platelets. Also, her magnesium (that doesn't look like it is spelled right either, but it's late and I'm to lazy to look it up) was low even though she takes 1600 mg of mag each day orally. She will probably get an infusion of mag tomorrow. Anyway, they will get her all "tanked up" as they say for the weekend. Also, she gets pentamadine, so we will be there for HOURS!! The boys will probably go to the Nike skate demo. We heard that Chet Childress will be there!!
We decided not to go to the party at Duke Gardens. I'm sure it would have been fun, but Leigha said she would be just as happy at the apartment with her family. Awwww!! We bought an obsene amount of candy and gave Ian and Leigha a pillow case. I went in my bedroom and Bryan went in the laundry room and we made the kids go back and forth and knock on each door for candy. I let them off pretty easy, but Bryan made them say trick or treat and asked their name every time. He would also be a different person each time they knocked on the door. Don't ask!! Once, he was was a redneck, and once he put a towel around his head, and once he tied his shirt up in a knot-it was very interesting and I almost peed my pants laughing at him.
Also, yesterday when I checked the mail, there were so many cards in there I couldn't believe my eyes. There were 2 other people getting mail at the same time, and they looked amazed as well. I think they were probably trying to figure out who I was, maybe some celebrity in disguise who gets tons of fan mail. It is kind of nice that all the bills go to Conway to Bryan and we only get tons of happy mail. I will try to attempt to tell about some of her birthday greetings. I would try to mention everyone by name, but I think every single member of our church has sent Leigha a birthday card. Her "adopted mom", Susan Mevissen, has some wonderful co-workers who have sent her lots and lots of cards. We can't believe how generous and thoughtful everyone has been-as one card says "Know that friends, family, and strangers wish you a happy birthday". Let's just say that I could park at Duke for a very long time with her b-day cash!!! She says that she is going to save her money for something important. She wants to open a business one day, but I can't say what it is yet-she is designing some things and will probably use the cash to launch her business. I'm not just saying this because she is my daughter, but I have no doubt that she will succeed if she puts her mind to it!! She also got a Hollister gift card from Uncle Gary and Aunt Carolyn and Tina and Kelly, a Walmart card from Paul and Janet, more b-day cash from Pop-pop and Grandma Barbara, and a Best Buy card from her friend Berkeley and her parents. She also got a HUGE box of goodies from her friend since 3rd grade, Maria, and her whole family!
Today, we only had to drop off cyclosporine levels, so Leigha didn't have a check-up, but I had my appointment at the dermatologist. (I feel like I'm spelling everything wrong tonight) I had to get a couple places biopsied, and I will know hopefully within a week what's going on with that. I guess at any rate, my days of baking in the sun are probably over. I'm going to get one of those big floppy hats and some spf 50 sunscreen!!
I'll update more of our adventures tomorrow!!
PS- Normal is over-rated!!!!
Wednesday, October 31, 2007 9:25 AM CDT
Day +57
Wow, I can't believe we are on day 57 already! Time flies when you're having fun. Ha Ha!! I know I just updated late last night, but I am doing all my housework, and computer stuff, and drs. appts. early today, so we can have quality time all day today. It just so happens that two of our favorite guys in the whole world have snuck up here for a visit, but that's a secret because they are playing hooky from work and school!!
Happy Halloween!
Tuesday, October 30, 2007 7:18 PM CDT
Day+56
Today was a quick clinic day. Leigha got a 15 minute infusion and was out of there in no time. Tuesday will soon be a day off, but for now she gets an infusion for the gvh, even though the rash is gone. Tomorrow I draw a type and cross, because she will probably need blood. She hasn't needed blood for over three weeks though!
Thank you for the birthday dinner ideas! We haven't quite made our minds up yet. Thank you Flash for offering to get her a bakery cake and I wish she could have one, but it's on the no-no list. She can have "processed cakes" or freshly baked right out of the oven. So, she is stuck with me baking a Betty Crocker box cake. If we really get creative (and bored) we may try to bake from scratch. My mother used to do that sometimes, and make icing from powdered sugar and food coloring.
Leigha continues to get lots of birthday cards and presents! I hesitate to give thanks because I don't want to forget to thank anyone. But she did get jewelry from Pop Pop and Grandma Barbara, jewelry from our friend Maria from New York, $$ from Na Na and Pa Pa, $$ from Grandpa Bob and Grandmother Edith, and 2 very hard to find DS video games from the Jones family from church. Leigha is working on her thank yous and I'm sorry if I left anything out. She has had a very good birthday month, as her actual b-day is not until Saturday and she has already done quite well for herself!
Well, it's dinner time! Love, Mary XXOO
Monday, October 29, 2007 6:11 PM CDT
Day +55
Well, I know how to get people to call me! I just need to fail to update for 4 days!! Seriously, I love hearing from everyone, and I apologize for the lack of update, but as they say, no news is good news. We had the weekend off from clinic, and just hung around the apartment. We watched a lot of tv, ate alot, and took some walks around the grounds here at the apartment. Leigha has been spending quite a lot of time opening birthday cards. I have never seen so many! The postman must think we are some kind of celebrities to get so much mail. I have been using Leigha's b-day money for parking for the past 2 weeks!! I log it all in a notebook, so I'll remember how much I owe her, even though she says I don't have to.
Today, Leigha had an appointment. She got gcsf, but her platelets and hemoglobin are holding nicely. We also got permission to go to the outpatient bone marrow patient Halloween party at Duke Gardens.
We are trying to figure out what to have for dinner on Leigha's birthday. I wish Dude could come visit her for her birthday!
I will update more tomorrow. Leigha and I are going to watch CSI Miami!!!
Thursday, October 25, 2007 4:37 PM CDT
Day +51
We had a nice day. Thanks for all the prayers and well- wishes! It's so very comforting to know that so many people care about us. Your kind words, prayers, and advice mean more than you know to us!!
We only had to drop off cyclosporine levels today. I drew from her blue and red line, so we will know if her line got contaminated the other day. We have just enjoyed sitting around and watching tv and I even took a nap on the couch. Leigha has been attacking her school work with some kind of vengence. She is what her homebound teacher calls an independent student, (which means that she is probably as smart as he is and I'm not being mean when I say that-she is as smart as most people I know) Well, she does a chapter of work and her teacher checks over it when she is in clinic. He says that she should keep working that way until she finds something that she doesn't understand. (So far that hasn't happened!) I know that it's a good way to keep herself busy, but she is literally going to finish her science book before Christmas!!
I talked to Tena, our Blue Cross caseworker, today, and she was surprised to learn that Leigha is already off her TPN (she has been for 2 weeks) She says that she follows a lot of transplant patients, and it's unusual to have their appetite back so soon and maintain their weight on their own. Leigha is off all her anti-nasuea meds except the behind the ear patch.
Since Leigha is out of the hospital and doing better, I have been trying to get an appointment with a dermatologist to have a place on my forehead looked at. Leigha's doctor wrote me a letter of referal and explained my situation, as to why I had put off going, and that I needed to have it looked at, etc, and the drs. office called me to tell me that the next appt. was Feb. 2007!! I asked to get put on a waiting list in case of a cancellation, but that list is full! The secretary gave me the number of another drs. secretary, and I left a message on her machine this morning. So, hopefully I'll get some good news on that soon.
Oh, the last thing we ended up baking was actually brownie bites. Tonight, we will either have pie or bake brownies. We bake something everynight, depending on what Leigha is in the mood for.
News from home: - Bryan is working on something that will help us stay in touch better. (some sort of surprise)-Today was "wear pajamas to school day" and Ian, of course wore pjs to school. He went one step further though, and looked in the school handbook and realized that there was nothing that said you couldn't wear pjs everyday, so Bryan will have to deal with that!-Leigha and Ian have a new aunt;Their Uncle Matthew and Aunt Stacey were married in Vegas last weekend._Our church organized a team and are walking in the Light the Night walk in honor of Leigha.
I was trying to think of more interesting news, but Leigha wants to watch our netflix now!!! Love, Mary
Wednesday, October 24, 2007 12:18 AM CDT
Day +50
I am very saddened and humbled today. Leigha and I both have gotten a little carried away with the worrying about every little thing. We are so careful to the point of being compulsive. I know that it is important to be careful, but we also need to just be thankful for the fact that she is doing so well. I'm trying to convince her that all the worrying in the world will not help anything, and it just makes you not enjoy the good times.
While we have been worrying and "what if-ing", whining about pepper on french fries, and nursing mistakes, 3 mothers from 5200 have lost their children. I heard last week that Angel passed away. He was the 3 month old baby who had been there since he was 4 days old. A 3 year old named Mason passed away. And Jacob, who was our neighbor on 5200 died. It has been a horrible week for so many 5200 families. Please pray for these families in their time of need. Please pray for Leigha's continued good health . Please pray for my strength and ability to do everything in my power to make her better. Please pray that both of us will be able to quit worrying so everyday and enjoy the wonderful day that we are blessed with.
Thank you.
Tuesday, October 23, 2007 9:39 PM CDT
Day +49
We are doing pretty good. I think the steroids and the lack of activity has Leigha worrying about every little thing. We are both very careful and follow the rules, but things seem to just happen to us!! Yesterday, we got our Monday night Outback. I always order directly from the manager, because she is familiar with Leigha's situation and special diet needs. She's been great to us and remembers each week what Leigha and even I want. This time I ordered french fries for Leigha and after she ate one, she asked me if they looked like they had pepper on them and sure enough they did.(Leigha can't have raw black pepper, b/c of possible mold spores) I called to ask the manager and she told me that yes, they are seasoned after they are cooked. It was a misunderstanding, because usually Leigha only eats steak and the manager thought the fries were for me, and it was ultimately my responsibility to check out the food, but I just didn't think that pepper would be on the fries. The dr. said that the pepper probably didn't have mold on it, and that little bit would probably not hurt, but Leigha had just let her guard down about worrying about every little thing she ate.
Today we went to clinic for her 15 minute infusion for the gvh medicine. The rash is doing much better, by the way. It's hardly noticable. One of the NP's came in to talk to us and I asked her to have a talk to Leigha about trying not to worry so much. The NP explained to Leigha that she was doing a wonderful job and that it was good that she takes everything so seriously, but not to worry that every time someone gets close to her, she will end up in the hospital for months. She went on to say that some patients don't listen to the dietary restrictions and other restrictions and some of them still do ok. She said it is certainly important to listen to the drs instructions, but for Leigha not to worry herself sick over things beyond her control. Well, I could tell Leigha felt better and could literally see her shoulders loosening up, and then right at that minute, the nurse came in to flush her line where her infusion had finished and she did a blood return while Leigha's cyclosporine was running through her white line. (NOT A GOOD THING) It could contaminate her line where we can't get certain labs without sticking her vein, which is Leigha's biggest fear. It was horrible!! I know that we all make mistakes and the nurse didn't mean to do it, and she said she was sorry-she didn't know that cyclosporine was running. Leigha had told her nurse who was caring for her that she had cyclosporing running, but this nurse had just come in to help, b/c she heard Leigha's pump beeping. Leigha said that it wasn't fair that as careful as she is, as soon as she let's her guard down, somebody does something that could cause her a lot of trouble. She then pointed out that the cyclosporine pump was sitting there plain as day. I know the nurse felt bad, but Leigha felt worse!! Her NP gave her some ativan and we came home and napped.
Tonight has been a little better. We had a nice dinner and are going to bake some cookies! We talked to Bryan and Ian. They will not be able to come see us again this week! There is some chicken pox and sore throats at Ian's school. He has been doing good at football. I think his team is in 1st place so far. He also lost a tooth! Well, it's cookie baking time!! Love, Mary
Sunday, October 21, 2007 11:05 PM CDT
Day +47
I just realized that my update from yesterday did not post. Oh, well! We had a pretty nice day. We did take an unexpected trip to the day hospital last night (I guess that sounds funny, but the day hospital is open until 8pm and it's where you go to get blood or infusions, or where you go on the weekend, or when the clinic is closed) Leigha's central line site was red and we thought it was from the dressing, but wanted to make sure. All turned out well, and since there were no other patients, we hung out with the cool weekend nurses and had an interesting conversation about our favorite television shows.
Today had a stressful beginning, but turned out ok. Long story short, I had some problems with Leigha's central line, and could not get the Duke infusion nurse to return my page. I have called 4 other times and have only gotten a return call once. They really don't seem to understand that when people page them, it is a problem that needs addressing right then and there, or soon at the very least. I ended up doing what I thought was right, and then calling the day hospital (twice) for reassurance that I had not messed anything up. I called the paging operator to let her know that the nurse had not called me back, and gave her a brief history of the other instances, but she so obviously did not care. I don't want to sound like one of those people who just complain if something doesn't go their way and I'm not bashing Duke Infusion, because the pharmacist has called me back promptly (and personally delivered medicine to the apartment at 11 pm) but it is a very helpless feeling to be at the mercy of someone else in a situation, and be waiting on a phone call that never comes. I am not a nurse. I have asked hundreds of questions, and spent hours researching medical info pertaining to Leigha's illness, and I made sure I knew exactly how to handle all the things that were expected of me to do at home, but sometimes unexpected things arise,and I don't want to do something (or not do something) that will cause Leigha to go through even more than she already is. I know I'm rambling and that this probably won't make much sense, but I feel better after venting!!
On a brighter note, Leigha and I took a ride to Raleigh. The very cool guys at Project 58 and Vertical Urge had a demo with the Matix skate team, and they got Leigha a poster autographed by the whole team, a t-shirt, stickers, and skate mags. We pulled up to the curb, and Chris, one of the employees there, brought Leigha's stuff out to the car to her. He told her that the Nike team was coming soon, and he would get their autographs, too.
Bryan and Ian news: Ian's book report was a big success on Friday. Bryan was on his way to work Friday when a Conway police officer met him in the yard and told him that he was going to have to write him a ticket for not picking up Dude's poop. Apparently, this officer's off-duty sgt. saw Dude poop, and called this officer on his cell phone and told him to ticket Bryan. Bryan and the officer had a long discussion about it and after several phone calls and Bryan's request for the sgt. to come to our home, etc, etc, Bryan got a warning ticket. Last night, the boys went to a Halloween party. Today, they went to Sunday school and church. I can't wait until we can all go together. Some of our church members organized a golf tourn. and Thrivent added funds to what they raised. Half the money went to Mercy Hospice and the other half was for Leigha's expences. So, just when we were about to be in big trouble, finacial disaster was avoided once again. Thank you God for looking out for us and seeing us through this!!! And thank you to all of our friends and family, for your prayers and support. And thanks to all of you who read this incredibly long winded update. Goodnight!!
Friday, October 19, 2007 6:56 PM CDT
Day +45
I know you would all like to hear personally from Leigha, as her updates are so informative yet entertaining, but apparently her creative genius can't be forced, she says that she can only update when she gets the calling, that you can't rush inspiration. What that all boils down to is that although she loves reading her guestbook entries, you are stuck hearing from me again!
Today was a good day. Leigha got her IVIG, her GCSF, which helps increase her white blood count. (which was within a "normal" normal, but they don't want hers to fall below 5.0.) The rash is much better, but she still got the immunesuppresant infusion today, but we were told that we have the weekend off!!! Not even lab drop-offs since her counts are holding so good on their own. We were so used to going every single day, we forgot that that our appointments would become less frequent. She has only recieved blood one time and platelets once in 2 weeks. Back to the rash, Dr. Prasad he wasn't too worried about the rash. GVH is considered acute if it occurs within the first 100 days.
The birthday cards continue to come in the mail! She got 6 today!! We also got our netflix and are going to watch right after nightly infusions and meds which are due right about now! Goodnight!!
Thursday, October 18, 2007 3:41 PM CDT
Day +44
Today has been pretty uneventful. (which is a good thing really) Leigha and I dropped off labs, came back home. Her gvh rash was all but gone, and right before we went to her appt. at 1pm, I put her cream on it and it flared up worse than ever. Other than that, she got a good report. Her platelets came up on their own, her hemoglobin is holding, and her white count is holding it's own. Her "big" clinic day is tomorrow. She gets to see Dr. Prasad and he will make the call as to whether she will start the new iv gvh med. It's pretty much a done deal, though, because Michelle, the NP has already ordered it for tomorrow.
Leigha and I are just chillin in front of the tv and discussing the downfall of Cartoon Network. We agree that they have tried to "modernize" everything to the point of making it painful to watch. Then, the cartoons at night on adult swim are not just nasty, but just plain wrong. They have messed up Scooby Doo. Freddy doesn't even wear his cravat anymore. Even the commercials are bad, Barbie dolls look like prostitutes, and the toys and games stink. Anyway, that's what we are talking about. I guess we have too much spare time!!!
Leigha wants to say thanks for all the mail she continues to receive. Her b-day is November 3rd and by then we will have her whole bedroom wall covered. I will take a picture and post it on here, just so you can see how many cards she's gotten. XXOO Mary
Wednesday, October 17, 2007 10:30 PM CDT
Day +43
Sorry to worry everyone! We are doing well. I know it seems like we would be bored out of our minds, but believe it or not we keep pretty busy for people who can only go to the doctor's office! Leigha has been getting pretty good check-ups and her labs have been good. Her gvh rash is not getting better, in fact it is getting kind of worse. She has had her creams increased and iv steroids increased and if the rash is not gone by Friday, she will start a new medication. I can't think of the name of it right off hand, but I have the info sheet in Leigha's notebook. It is actually an immunosuppresant, so we will have to be even more careful about germs and such.
While we wait at the clinic, Leigha plays games on her Nintendo DS, and she had beat all her games, so we went to Circuit City after clinic yesterday, and I ran in and got her a couple more. She had gotten some B-day money in the mail, and had really been wanting Big Brain Academy and Tetris for DS. That should keep her busy for awhile!
She has also been working on her schoolwork. The teacher has been meeting us at clinic.
We have been watching our Netflix. We look forward to checking the mail after appointments each day, because Leigha has been getting lots of b-day cards each day. We also got a package from Beth with t-shirts from Happy Days Family Camp and a card signed by everyone. Also, Beth made Leigha a mug with her name on it--she is quite crafty!!:)
We also got a package of gourmet snacks from Lisa G. Very, very good stuff!!
Bryan and Ian are staying busy. Ian has a book report due on Friday, which he told his Dad about yesterday. (after the library had closed) Bryan picked up the book at Barnes and Noble and Ian read a few chapters after football practice!
We won't go so long without updating! Goodnight,all!!
(Please continue to keep Leigha in your prayers, as well as the other children here. There are so many brave children here going through so much. We heard that Mary, Eric, and Jacob are in the PICU and that little baby Angel passed away on Monday. He was 3 months old and had been in the hospital since he was 4 days old.)
Wednesday, October 17, 2007 10:30 PM CDT
Day +43
Sorry to worry everyone! We are doing well. I know it seems like we would be bored out of our minds, but believe it or not we keep pretty busy for people who can only go to the doctor's office! Leigha has been getting pretty good check-ups and her labs have been good. Her gvh rash is not getting better, in fact it is getting kind of worse. She has had her creams increased and iv steroids increased and if the rash is not gone by Friday, she will start a new medication. I can't think of the name of it right off hand, but I have the info sheet in Leigha's notebook. It is actually an immunosuppresant, so we will have to be even more careful about germs and such.
While we wait at the clinic, Leigha plays games on her Nintendo DS, and she had beat all her games, so we went to Circuit City after clinic yesterday, and I ran in and got her a couple more. She had gotten some B-day money in the mail, and had really been wanting Big Brain Academy and Tetris for DS. That should keep her busy for awhile!
She has also been working on her schoolwork. The teacher has been meeting us at clinic.
We have been watching our Netflix. We look forward to checking the mail after appointments each day, because Leigha has been getting lots of b-day cards each day. We also got a package from Beth with t-shirts from Happy Days Family Camp and a card signed by everyone. Also, Beth made Leigha a mug with her name on it--she is quite crafty!!:)
We also got a package of gourmet snacks from Lisa G. Very, very good stuff!!
Bryan and Ian are staying busy. Ian has a book report due on Friday, which he told his Dad about yesterday. (after the library had closed) Bryan picked up the book at Barnes and Noble and Ian read a few chapters after football practice!
We won't go so long without updating! Goodnight,all!!
(Please continue to keep Leigha in your prayers, as well as the other children here. There are so many brave children here going through so much. We heard that Mary, Eric, and Jacob are in the PICU and that little baby Angel passed away on Monday. He was 3 months old and had been in the hospital since he was 4 days old.)
Sunday, October 14, 2007 4:33 PM CDT
Day 40
Thank you to all of our wonderful friends who continue to pray for us, leave us messages to cheer us up, and send Leigha mail to brighten her day! Leigha and I were just talking about how lucky we are to have so many wonderful people in our life. We would certainly rather be at home and healthy and oblivious of the whole cancer lifestyle, but on the other hand, we have crossed paths with so many beautiful people that we never would have known, some we have met and some that I feel close to without ever having met. Things do happen for a reason, and when Leigha is well, I don't think we will ever take anything for granted again.
Yesterday was an interesting day. We dropped off labs early in the morning and went back to clinic after lunch. When we got there, Leigha's weekend/day hospital nurse Kristen, told her that they had something for her that someone had left, and that Leigha was lucky that they didn't sell it on e-bay. We look on the counter and there is the most beautiful Element deck and we are wondering where in the world that it came from. Well her nurse goes on to say that someone from respiratory therapy dropped it off, that he has some kind of connection with some band, and had gotten it sent for Leigha. Also, that he asked if we could take a picture of Leigha with her new board and send it to the band. Well we realize that the resp. therapist is Jack, who gave Leigha a pentamidine treatment when we were inpatient. He was a really cool guy who noticed that Leigha was interested in skateboarding. (Her entire room was filled with skate posters, and Bam autographs, etc) Anyway they had a conversation about skateboarding, and music (HIM and CKY, etc) Anyway , we are thinking that the band is CKY, but Leigha wrote Jack a note and asked him to give her the details. Anyway, what a really nice thing for him to do, and it meant the world to Leigha.
Leigha is not my only child to have excitement yesterday. When Ian came back from Camp Happy Days last July, he asked if he could on a hunting trip in October. We signed up for it, because it was something that Bryan and Ian had always talked about doing and never done. When Leigha got sick, we knew that she and I would not be able to go, but that the guys should still go if possible. Well, they went this weekend, and checked in Friday to tell us how nice it was, and how nice everybody was, and that Ian passed his written hunter safety course and they watched him shoot to make sure he could. I guess all the times at the MB Shooting Range and the VanAernom Shooting Range paid off, because Ian had no problem. Well, his first hunt found him and Bryan in a blind and after sitting there and waiting for awhile, a doe came up behind them and they couldn't get a good shot. Awhile later, Bryan's cell phone rang, with his Sanford and Son ringtone, and they thought that had ruined their chances, but soon after, Ian noticed a buck staring them down. It was quite far away, I'll have to tell you exactly how far later, but Bryan told Ian to wait until it turned and when he did, Ian fired his first shot which was a little short. Ian held his hand out for more ammo, Bryan handed it to him, and Ian reloaded and proceded to take down his first buck. He called me and when I asked if he had skinned it,and made sure he was going to eat it, he informed me that he had only just shot it, and I felt very special that he would call to share that with me right when it happened. Fast forward to the ceremony that evening. 3 out of 17 kids shot a deer and the meat was sent to be processed and they are going to mount the deer for the kids. Well it's customary to paint the hunters who made their first kill with the animal blood. They assured Ian that it would not get in his mouth or eyes. You have to understand that this is a kid that was raised all his life being told the importance of BSI and avoiding blood and pretty much being raised by a germaphobic (me). Well after they painted his face, they dumped blood on him and he was furious. He didn't speak to his father, or the hunting coordinator for the rest of the night and left the ceremony to go straight to the shower. He was ok this morning and was looking forward to doing some sort of corn maze and going on another hunt. He asked his father if he thought I would allow the deer head in the house!!
Today, Leigha had to get a magnesium infusion and increase her oral dose of mag. She also got iv steroid and her dose was increased for home, because the gvh rash is getting a little worse. All in all, she is still doing very well and she is feeling good and eating good. We got her a pair of shoes yesterday. I pulled up in the fire lane at Vertical Urge and asked if I could take shoes out to show Leigha. The guy was really cool about it and after a few trips, we found a pair in her size and bought them. I also got her a long sleeve shirt, since I didn't pack many of those and it is already cool here in the morning. Well, I certainly made up for not updating yesterday, huh??
XXOO Mary
Friday, October 12, 2007 10:43 PM CDT
Day +38
Today we dropped off labs and then went back to the clinic at 1:30. I forgot that it was her main clinic day and she needed ivig. (a 3 hour infusion) and platelets They were very busy there and did not premed her before the infusion. 15 minutes into it, she got a fever and high bp. After getting tylonal and benedryl she was ok to finish her infusions. Dr. Prasad said to continue her creams for the gvh and if it wasn't better by Monday she would have to increase the steroids and start a new iv med. He said he was very pleased with how well she was doing. We found out that before we get released from here, we will have to have a ped. oncologist and close access to a capable hospital that has irradiated blood products. I guess I will check into Wilmington and Georgetown, and I don't even know if Conway or Myrtle Beach has a ped. onc. If anyone has any ideas, let me know. If we don't have something lined up that the Dr. is ok with we will have to stay here longer. Today was the first time since Leigha was released that we met with her attending doctor. We asked him if we could have a visitor, because Leigha's Uncle Butthead was coming to see her on Monday, but he said that she can only have Bryan and Ian come here for now. Also, she has outgrown her shoes and they are rubbing her feet, which is so not good for her right now, and I thought we could go to Vertical Urge when all the kids were in school and wear a mask and she could pick a pair of shoes. He said that it was too soon for anything like that, so maybe I will take her and see if they'll let me take a couple pairs out and show her. Anyway, I'm thankful she's doing so good and I know it is still a critical time. I am very, very, careful, but was really looking forward to having Justin come visit us and taking her to get some shoes. Bryan and Ian won't be able to visit for awhile with school and work and football and everything, but we will just have to keep each other company! So far we haven't driven each other too crazy!!! Well, Leigha and I are going to watch Fresh Prince. We never get tired of that show. Love, Mary
Friday, October 12, 2007 0:05 AM CDT
Day +37
Today we dropped off labs and came back to the apartment. Leigha went back to sleep and I did some housework and paperwork. I'm having a difficult time making some insurance claims, because my primary insurance is auditing our old hospital. I don't know exactly what that means for me, but since we are probably getting close to maxing out Leigha's insurance, if they can find us a few extra dollars then I'm glad.
Leigha is on so many creams for her gvh that it seems like a constant cycle of putting on creams and she hates lotion and being greasy! We went to clinic at 1pm for Leigha's checkup. We have been really lucky and getting in and out of clinic quickly. She has only needed blood once, and the rest of her counts are holding their own which is wonderful. Today we waited to get checked in for 30 minutes, and I checked to make sure they knew we were there. They told me someone would be with us in a minute. Well, Leigha and I fell asleep and woke up an hour later!! Once we got in the exam room, we were done quickly. After the appointment we walked to the bone marrow unit to say hello to everyone and see if any of Leigha's mail was being held for her.
Leigha continues to look and feel good. Her appetite is great. Tonight she had a corndog, french fries, and gatorade. Everynight I bake cookies or brownies and she has them with a glass of milk (although it has to be lactose free because of her special diet that she will be on for 6 months) I told Bryan that he is going to have to bring me an exercise bike or something!
Tonight after dinner, we watched some CSI Miamis and wrote an update to her bone marrow donor. We can write to him as long as we don't mention any details that could give away who we are or where we are. The bone marrow registry people moniter the letters and pass them on if they don't break any of the rules. You can't even talk about the weather because that might give away location. Speaking of which, was very cool and fall-like today! We talked to Bryan and Ian. Ian's football team won their game tonight and Ian has been playing every quarter!! We are very proud of him.
There is going to be a special demo at the skatepark here in Raleigh with some pro skaters. I called and talked to them and they are going to put together something for Leigha since she isn't able to go, but at least she'll have autographs.
Everyone has asked what Leigha wants for her birthday. She really isn't one to ask for stuff, but she says that she does enjoy playing pc games which I get her at Best Buy when I can. The problem is that she beats the games so fast that I can't buy them quick enough. Oh, I got the results from her IQ test that they did pre-transplant. Her IQ is 128 and her memory is in the 99th percentile. Sometimes the methotrexate and radiation can cause problems with IQ and memory. She scored very high in all the tests even after 2 1/2 years of methotrexate! The dr. said that even if she does have some effects from this round of chemo(which she may not) that she is so advanced that it would not be a problem for her.
We see Dr. Prasad tomorrow and I will hopefully have more
good news!! Love, Mary
Wednesday, October 10, 2007 5:22 PM CDT
Day +36
Hello, Everyone. We had a good checkup today. Her gvh rash is still there, so we have 3 different creams to use.
Right now is is not a worry because it is mild and can actually help fight any cancer that may have been resistant to the chemo and radiation. It's just not the most comfortable thing for Leigha. Her counts are continuing to hold their own.
The cable guy came today, so we will have some hbo channels finally, although I am a little upset at hbo for cancelling John From Cinncinati. It's not even on the demand channel! Neither is Big Love, but if that's my biggest problem, I guess I can deal with it!! We've been enjoying the netflix Bryan signed us up for and reading a lot in clinic. Leigha does a lot of pc games and so far we have kept boredom away.
I can't believe that Leigha will be turning 14 on November 3rd!
We are about to have dinner and do iv meds and maybe watch a movie. Good night!!!
Tuesday, October 9, 2007 11:38 PM CDT
Day +35
Another great appointment. Leigha has not needed platelets since we left the hospital which is pretty impressive. She has only needed blood once and her white count is impressive as well, especially since she hasn't had GCSF, the shot that helps the white count, since before we left the hospital. We are getting into a routine with the iv meds and lab draws. Her appetite is wonderful. Yesterday, she got special permission to have that Outback steak that she has been craving. I just had to call and speak to the manager who is familiar with the bone marrow kids' needs, and ensure that the steak would be cooked fresh right at 4:30 when they opened, with no spices put on after it was cooked, and it had to be cooked well done. When I went to pick it up, the person who brought it out to the car said the manager, whose, brother had cancer, had taken care of Leigha's steak. I swear, I can go so long without crying or losing it, and things like that really get to me!! I made a mental note to write her a thank you and then remembered that I had made a mental note to write a couple other thank yous and couldn't remember if I did. Plus, when Bryan got home on Sunday, someone had cut our grass and weeded and he has no idea who did it.He said the yard has never looked so good. So, please know that we appreciate everything that is done for us, every prayer and act of kindness and if we fail to use our manners it's because we are sometimes overwhelmed by it all!! Back to Leigha, she is feeling good, looking good, and eating good. We did have to start some creams for gvh rash, so let's pray that that does not get out of hand. We are getting our mail here at the apartment, and mail is still coming in slowly from Duke. Apparently they have their own post office and it sometimes takes a little longer than it normally does. We will update better now that we have computer access. Love, Mary and Leigha
Monday, October 8, 2007 10:57 AM CDT
Day +34
Well you were probably all wondering what happened to us, huh? Bryan and Ian were at Leigha's confetti parade, which involved more silly string than I have ever witnessed. Ian walked beside her to spray anyone who tried to get her, and Leigha was armed as well. I had given Dylan 3 cans of silly string to get her really good, and he did not disappoint. It was very touching to see all the nurses and most every other patient come to see her off. It was very strange to leave the hospital together! We settled into the apartment, which is very nice, I might add, much nicer than our last apartment. I just got internet today, that's why I haven't been updating. I am just started to get comfortable with all the many oral and iv medicines. I do blood draws each morning and drop them off and go to clinic in the afternoon. (Thanks to Sharon's advice, and we have hardly had to wait) Yesterday was a long day at clinic because Leigha needed blood and it took 3 hours, but Bryan came and sat with her and Ian and I went to Target to stock up on more groceries and supplies. Leigha's appetite is wonderful and I fully expect that they will reduce her tpn ("iv diet") today. I'm just getting used to adding vitamins and spiking that iv bag, but things will be much easier without having to do that at home. Despite all we have to do here, it is so much nicer than being in the hospital. Leigha is happy and comfortable here and doing so good!! It was hard to see Bryan and Ian go, and it will be awhile before they can come back, but we really did have a great weekend. I will update better tomorrow, because we need to go to our clinic appointment at 1pm. Thanks for checking in on us! Love, Mary
Friday, October 5, 2007 1:52 PM CDT
Day +31
I have only one thing to say today: 100% donor cells, baby!!
Wednesday, October 3, 2007 6:13 PM CDT
Day +29
Tomorrow is the big confetti parade day!!! We will be going to our apartment in Durham. I signed a 3 month lease, but I haven't seen the apartment yet! I was going to go take a look at it first, but I didn't want to leave Leigha, and a lot of other moms told me how nice it is. I learned today how to give Leigha her tpn. I got all the stuff I need to draw labs. The first couple weeks is pretty much doing labs, giving iv meds, going to clinic, giving iv meds, and sleeping, but, at least we are getting out of here!! Leigha looks and feels wonderful today. She is getting ready to attempt to eat peanut butter crackers, her first food since the cheetos fiasco. I think once we are at the apartment and I am able to cook for her there, she will eat better. I just changed her caps and I am feeling pretty good about doing that. Dr. Prasad said that he is delighted at Leigha's progress and was going on about how good she looks! Well, I have a lot of packing to do before tomorrow morning. Love, Mary
Tuesday, October 2, 2007 3:25 PM CDT
Day +28
Very good day!!! Leigha did not go the the cafeteria last night. We were going to wait until late, and wear a mask, but some of the nurses advised against it. Just to clear things up, Leigha would never eat cafeteria food even with a "normal" immune system. She wanted to get some cereal and the special lactose free milk she has to have and she has to eat the processed donuts in a sealed packet. :(
Anyway, she ended up walking with me to the vending machine and her first food after almost a month was: Cheetos and Coke. Followed by horrible indigestion and advice that she should only drink flat soda. After "dinner" and watching CSI and Family Guy, Leigha took her methadone and ambien and slept like a rock!! She woke up this morning and somehow threw up way more cheetos and coke than she actually ate?????
I have had a busy day. I had a discharge meeting. Yesterday I learned how to administer iv meds through the pump. Today I signed a 3 month lease for an apartment, went and got a parking pass so I don't have to pay $6 per day for all the days I've been in the parking garage, bought Leigha some magazines and gum, and finally found the Duke Book Store where they sell the Kids Rule Duke Bone Marrow Transplant t-shirts. Then I had a massage here on the unit. While I was gone, I missed Dr. Prasad making rounds, but he told Leigha he was very proud of her and that she was doing excellent and that she will be leaving the hospital on Thursday if all continues to go well. I need to get groceries, supplies, and whatever we need for the apartment tomorrow, because Leigha can only go to clinic and the apartment for awhile. She can't go in a grocery store, mall, Target, school, church, etc. for the first year!! I can't leave her alone at the apartment or in the car, so it will be a challenge. Charlie, if you are reading this, I might be calling on you for emergency store runs!!!
I feel hyper and giddy at the thought of being out in the real world, even if the first couple weeks will be doing blood draws, dropping them off, sitting in clinic, and giving iv meds, at least we will be out of the hospital and that much closer to going to our "real" home. I will e-mail our apartment address to you if you want it. Sign the guestbook if you get a chance. Love, Mary
Monday, October 1, 2007 3:17 PM CDT
Day +27
Still no sleep for Leigha. She had the max dose of ambien last night and 2 consecutive doses of ben/phen. This morning she had 5mg oral valium followed by the max dose of iv valium. No sleep!! She didn't even want to go on her 4 hour pass because she is too tired, mentally and physically from no sleep for 5 days. <<<
We get our apartment on Wednesday and move in on Thursday if all continues to go well. We are very lucky that things are going so well. Please keep the prayers coming.
Debbie B. the postcards are a wonderful idea!! The mail takes awhile to get to Leigha here, so maybe everyone should hold onto any mail they have until I can give you our apartment address. Well, I am going to enjoy the evening with my daughter who is feeling like her good old self!!
Sunday, September 30, 2007 11:48 AM CDT
Day +26
I'm updating early today. Leigha still didn't get a good nights rest. Tonight they are doubling her ambien, and she is not going to lay in the bed at all today, until bed time. The doctors and nurses seem to think that if she is active during the day, that she will sleep at night, but I personally think that she is exhausted, but the steroids just need to get out of her system. The best part of the deal is that WE GET A 4 HOUR PASS TODAY!!!! We are waiting for Leigha to get disconnected from her pole and I have already wiped the car down. We could go to our apartment if we had one, but since we don't yet, we are going to drive over to Duke Gardens and take a walk and just sit in the sun. Sharon, if you read this, give us some ideas on what to do with ourselves when we get day passes, please!
Dr. Martin just came in and gave us the ok to go, so we are out of here people!!!!!
Saturday, September 29, 2007 9:19 PM CDT
Day +25
Leigha did not sleep well last night even with the thorazone, so needless to say, she was miserable this morning after tossing and turning yet again. At 6 am she told me she needed something to sleep. They have been reluctant to give her anyting during the day, because they don't want her sleeping all day and also think that if she gets tired enough, she'll sleep at night. Well, she was desperate for sleep and I pretty much told the nurse that it was necesary. She got 1 mg iv ativan, but Leigha has developed a tolerance to it, so we strongly requested another mg. That helped her sleep soundly for 1 hour and doze for another, but she still needed sleep. Tonight, she got ambien, which puts me right out, but everytime I think she's sound asleep, she'll toss and turn and sigh.
Dr. Martin did rounds this weekend. He also thinks we might get to go to the apartment next week. He also told me that he would be very surprised if Leigha's own cells could grow back this soon, and he feels confident that it is donor cells. It was nice to hear that Dr. Martin is confident that it is probably donor cells. He is not concerned that she is still not eating and said that it would be unusual if she were. The plan is to get her off as many iv meds as possible. Her bp has been elevated these past 2 days, so she is taking medication for that. I just pray that she stays well with no infections. I am so careful with cleaning the room with the clorox wipes and washing my hands at least 20 times each day, but I get kind of nervous that there are quite a few sick nurses working. They have a no fever policy and have to be on antibiotics for so many days, but just when 1 nurse gets better, it seems like 2 more are coughing. I know that some people have allergies and even smoker's coughs, but it tends to make you nervous to hear a nurse hacking away in a bone marrow unit. I am not shy to ask for someone to wear a mask or wash their hands in front of me and nobody has seemed offended by this, so I guess everyone here understands that it's a parent's duty to be their child's advocate.
Bryan has been working at home on putting the fence up. He is trying to keep a positive attitude despite some unexpected things that arose on the homefront. I couldn't help laughing when he told me of the problems he had digging holes for the fence posts. I can't even begin to repeat it, not that it's bad, it's just that I couldn't do his story justice. Anyone that has ever heard Bryan tell about something knows that he can describe things as mundane as standing in line at the post office and have you laughing until it hurts or the one about him getting red bugs in the woods will actually make you pee your pants. I was laughing until he told the one about how our homeowners wasn't figured into the mortgage like we thought it was, or how the house tax had somehow tripled. He couldn't even make that funny, and I got off the phone feeling worried. Until Ian called and told me that he had eaten his first vienna sausage and was having brats for dinner, but not to worry, Dad was starting him on Crestor. Bryan thought it would be funny for Ian to call and tell me all that, because Ian always insists that he is northern not southern. I tell him he was born in Conway, SC and that's pretty southern. Well Bryan told him that he must me southern, because if he were northern, he would have thrown up the vienna sausage!! (pronounced vi-(with a long I) E (emphasize long E) na)!!!
Anyway, people, I am going to go to sleep. I'm trying to type quietly, but Leigha is still tossing and turning and upset that her ambien isn't working like we thought it would.
Friday, September 28, 2007 3:05 PM CDT
Day +24
Leigha did not recieve her gcsf shot and her wbc stayed in the 20's. The test to see if it is donor cells will be given on Monday and the results take about a week to come back. Leigha has come off a lot of her iv meds which will make it easier when we are discharged. I have a meeting on Tuesday with a nurse who will teach me how to manage all of her pumps and iv meds. Dr. Prasad said that if she was not having the emotional/insomnia issues, things would be just about perfect. He says at this stage of transplant she is very lucky to be doing as well as she is and that we will be discharged on Thurs. or Friday of next week, if she has no fever, rashes, or stomach problems. Leigha is definately ready to get out of this hospital room! From what I hear from others, we will still spend the entire day at the clinic, but we'll be able to go to our apartment here in Durham at night.
Bryan and Ian will not be coming this weekend. Bryan has something going on that is probably allergies, but we don't want to take the chance of exposing Leigha to anything. Although her white blood count is high, it is not the mature cells you and I have in our bodies, but very immature cells that are just starting to grow-therefore not good at fighting off illness.
Bryan is trying to get some things done at the house. We could actually be coming home in 2 months and a lot of the work that needs to be done to the house can't be done right before Leigha comes home. You don't want to do remodeling or anything that will stir up dust right before Leigha comes home. Her room and bathroom upstairs was completely re-done right before we came here thanks to Flash at Courageous Kidz and some very nice friends of hers who helped out with that. They even got Leigha air and heat installed upstairs, since we only had HVAC downstairs. There was even a water purification system and Mr. Glen, our friend's father, found someone to donate an air filtration system. If anyone knows of a plumber or someone who can hook up the air filtration who would give us a reasonable estimate, please let me know. Bryan is good at doing anything around the house, but we'd like to get a professional to hook up these things since it's so important for Leigha's wellbeing. Bryan would be willing to go under the house, or help with whatever he could.
Keep praying for donor cells and that Leigha can get a decent night's sleep. The steroids really give her insomnia, but they are giving her something new tonight that will hopefully help her sleep until the steroids are out of her system. Let us know if you've visited Leigha's site. We love reading her messages!! Love, Mary
Thursday, September 27, 2007 9:09 PM CDT
Day +23
Leigha is physically feeling better, but is really starting to miss her home,her family, her friends, her puppy, and her "normal" life. She did not throw up any today, but is still not eating anyting. Her WBC was some crazy number like 29-it's no wonder her bones hurt so much. The steroids that helped her fever and nausea, have caused insomnia which is very frustrating to her. Dr. Prasad has discontinued her Lasix, her antibiotic, her gcsf shots, and she only gets cyclosporine every 12 hours. He said if all goes well, we may be able to leave here for our apartment at the end of next week. So let's all pray that all goes well.
We had a pretty good afternoon. Leigha played bingo while I went to a parent meeting. Then we walked 10 laps and watched some tv together. Leigha is trying very hard to get some rest and I am waiting for my clothes to get done and I'm probably going to try to get some sleep, too.
Thanks for all the letters and cards. They really brighten Leigha's day!! Goodnight, Mary
Wednesday, September 26, 2007 3:23 PM CDT
Day +22
Wow!!! Leigha's WBC is 8.6 and her ANC is 4500. Dr. Prasad says that she is officially engrafted because her ANC has been +500 for 3 days. The steroids got rid of her fever and there has been no throwing up today! She is going to get a lower dose of steroid and gradually come off of them. They are cutting her GCSF by 50% (that's a drug that makes the blood counts recover quickly) and her cyclosporine to 12 hours rather than 24.(that's a drug that prevents gvh.) She still has not had a bite of food, but maybe the steroids will help that. She will get a test on Monday to tell if it is donor cells or her own growing back. The results will be back next Friday. The next thing we need to pray hard for is that it is donor cells that are growing. I will post some information tomorrow that will explain what ANC and GvH is. Leigha wants me to come sit with her and watch tv, so I will give the quick version. ANC is a specific breakdown of what type of white cells she is making. The total white blood count is multiplied by the segs + bands. GVH is graft versus host and that is basically when the donor cells start growing and recognize Leigha's body as "foreign" or "the enemy" and gvh can be mild, moderate, or severe or acute or chronic. It can happen any time within the first year after transplant. She will be taking medicines for the entire year to prevent it and if she gets it there are medicines that can help it. It usually occurs in the lungs, skin, or gut. Doesn't all that sound lovely??
Leigha was invited to a birthday party this afternoon. It was David's 21st birthday, and he is a really cool guy that is having a transplant here. His mom had cake and cupcakes and a pinata, and Trey the music man played guitar and we all sang for him. What amazes me is his attitute-always cheerful and funny and trying to make the younger kids smile. A lot of people would be bitter about spending there 21st b-day in the hospital rather than being out with friends, but not this guy. Please pray for all these kids and sign the guestbook if you get a chance. Love, Mary
Tuesday, September 25, 2007 10:05 AM CDT
Day +21
Leigha is still feeling very sick. The nausea may be the tiniest bit better, but that only means that she is sleeping more than puking, rather than the other way around. Her fever had been around 100-101 (still negative cultures) but today it is 102.6. They are stopping the linezolid but starting her on a steroid. When Dr. Prasad came to the room yesterday, he said that it was the engraftment that was causing her to be so sick and that her body was doing so many amazing things, we couldn't even begin to imagine. Also, she was so sick from such a big jump from 0.1-0.8. He said that Leigha doesn't mess around! She went from an ANC of 0 to an ANC of 640. I thought I had my decimal in the wrong place when I figured it. Well, last night the nurse did labs at midnight and when I went to get Leigha some ice at 1:30am, she told me that her white count was 3.4!!!!! She was very surprised that it was that high. The dr. had actually told us not to get upset if it dropped before it got any higher. I have not talked to the dr. about the white count being so high, but all the nurses are amazed by it. Nobody has ever seen it jump so high, so fast. Her ANC is over 2000. I'm going to talk to the dr about the good and bad of it all, but I did ask if they would stop her GCSF (which helps the counts recover). I do know that they will do the test soon that tells us if the cells that are growing are Leigha's or the donor's. We definately want the cells to be donor cells, but such a quick jump could increase the GVH???? I'll find out this afternoon when Dr. Prasad makes rounds. If he thought 0.1-0.8 was impressive, he will really know that Leigha doesn't mess around now!! I guess everyone has been praying hard for her counts to jump up---well it's working, people!
I am waiting to hear from the Red Cross today. There is a platelet shortage at Duke. Leigha gets platelets 1-2 times each day. Yesterdays bag was 1/3 of what she normally gets and the nurse said that there must me a shortage, that it happens a couple times a year and they ration out the platelets. I asked what would happen if they ran out and she said that she has never seen them run out, but they will ration. Leigha will need platelets daily for a long time and this concerns me, so I called the red cross to get some info. I know that Leigha's blood products come from annonymous donors, but there is a way to designate. I know I could have a successful blood drive in SC if I do it in Leigha's name, but could the platelets be sent here to her? Platelets have the red cells taken out, so it's not a matter of matching blood types. I'm trying to see if they can send the red blood wherever the shortages are and have the platelets designated for Leigha. Also, I want to do a marrow drive. No child should go through this period, but imagine needing a transplant and not having a matched donor. It only involves a mouth swab, and the hla typing is done and kept on file in case you are ever needed.
I'll post more on this when I hear from Red Cross and find out more info.
Thank you for your prayers and for signing the guestbook. It is very comforting to read your messages. Love, Mary
Monday, September 24, 2007 11:31 AM CDT
Day+20
We have good news and bad news. The good news is that Leigha's white blood count has gone from 0.1 to 0.8. That is still very low, but quite a jump in one day. The bad news is that all this work that her body is trying to get done is causing her to feel very very sick. She has thrown up for 28 hours straight. None of the medicines have stopped it and she is afraid to push her morphine button for her bone pain, because she's scared it will make her more sick. We tried to watch our movie last night, but she was too sick. She just feels miserable. She has some mail waiting for her that will cheer her up, but she feels too bad to read it yet. I actually got some mail today. My Daddy and Barbara sent me a beautiful study bible, so I could do the reading that goes along with my Joel Osteen book. Thank you!!! I am going to see if I can do anything for Leigha. She is still having fevers, but so far the cultures are negative. We will keep you posted. Love, Mary
Sunday, September 23, 2007 4:03 PM CDT
Day 19
The computer just ate my extremely long journal entry! I will try again, but it may not be very witty!! I just got back from spending the weekend with Ian here in Durham. Bryan stayed with Leigha. I called him this morning to check on Leigha's counts and he told me that she was having a bad day. She has been throwing up all day since 8 am, so they changed her anti-nausea meds. She also started running a fever, so she is back on the Linezolid antibiotic. Both of these things may be caused by the engraftment, but they had to give antibiotics until her cultures come back negative. The only thing is, that the antibiotic may slow down engraftment. They also increased her morpine, because of her bone pain, so she is resting now.
It was really good to spend time with Ian, but I hardly got to spend a minute with Bryan!! The little bit of time I had with him was spent passing information back and forth on what I had missed at home and what he had missed with Leigha. I miss those guys already!! Ian and I had fun. Last night we ate at Carabbas (it was wierd to eat there without Leigha because that's one of her favorite places to eat)Then we watched Saving Private Ryan at the hotel (Ian's choice, but very good)Today, we checked out of the hotel and drove to Raleigh to the skatepark. No injuries and he met a couple of experienced older skaters and learned some new tricks. I'll try to post some pictures and videos on his myspace when I can.
Also last night we went to Best Buy and used the gift cards from the Hendrick pit crew already. I got Leigha Blades of Glory which she has been wanting really bad. Ian used his card with the money he has been saving forever and finally had enough to buy a Nintendo DS. He's never had a game boy of his own, Leigha usually passes hers down. Everyone has been asking what Leigha and Ian would like, and gift cards are great, because Ian will be wanting games for his new DS and he can use Best Buy giftcards for that. Leigha can shop online with hers, or she also likes to buy books from Barnes and Noble, which is also close to the hospital.
Well, I'm going to rest a little with Leigha and then hopefully she will feel up to watching her new movie.
Oh, Beth. I'll be posting a picture with the pit crew guy's names. One was with Jimmy Johnson. One had on a Best Buy shirt if that tells you anyting!!
Love, Mary
Saturday, September 22, 2007 1:58 PM CDT
Day +18
Counts are still at 0.1. That shows that it probably isn's a lab error,but actually some cells growing. Dr. Prasad just came by to see Leigha and said that she looks pretty good and that her mucositis may get worse as the new cells grow. He also says not to panic if her counts drop and then get better.
The Hendrick pit crew came by this afternoon. They visited and brought Leigha and Ian some presents, Best Buy gift cards, and some t-shirts and hats. It was a nice visit and really cool.
We're just relaxing and reading some new skateboard magazines, and I will update tomorrow, hopefully with more good news!
Friday, September 21, 2007 10:12 AM CDT
Day + 17 SPECIAL UPDATE
I know I just did a journal late last night, but I have a special update. Last night before I went to sleep, I prayed over Leigha really hard. I came right out and asked for some donor cell growth. I've wanted it all along, but I came right out and asked. Then I told the nurse to wake me if there was a change in Leigha's white blood count, because I had prayed hard. This morning at 4 am, she woke me up to tell me that Leigha's white count had gone from less than 0.1 to 0.1, which is still no immune system, but a wonderful, wonderful indication that her donor cells are on the right tract!! I called Bryan at 4am to tell him the good news and he told me that he and Ian had prayed hard that night, too. Then, I couldn't go back to sleep! This morning Leigha told me that she had bone pain and normally that is not a good thing, but it can be a sign of engraftment!! Well, I just had to share the good news.
Thursday, September 20, 2007 7:57 PM CDT
Day 16
Another good day. Leigha got up at 10:30 a.m. and went to "school". She took a quick nap and then went to bingo where she won 2 prizes. Then we played cards, and when we went back to the room there was not 1 package for Leigha, but 2 big packages. One was from her grandparents in Virgina and it was pjs, slippers, and a Hershey Kiss candle. (That is a symbol between Leigha and Grandma Barbara). The other package was from Leigha's friend and Happy Days counselor, Beth. There was mail and pictures, books, posters, scrapbooks, photos, and crafts from not only Beth, but Leigha's friends Jennifer, Al, Samantha, Berkeley, Elizabeth, Sommer, Kaleigh, and Josie, and I hope I'm not forgetting anyone. Well, Leigha had the biggest smile on her face that I have seen in a long time. I couldn't help laughing either. My favortive pic was the one of Beth on the ground and Leigha pointing at her and laughing, or maybe the one that looked like Leigha was some kind of unruly kid and Al was for whatever reason holding her on a leash!! Anyway, mail made her day today. Thank you everyone who has called or signed her guestbook, or sent her greeting cards. It truly makes her day!
Her liver enzymes are in normal range. Hemoglobin is holding pretty well. Platelets are given once a day, but her perimeters are to transfuse at 75 rather than 20, because of some special circumstances, so that's pretty good. White blood cells are still less than 0.1, but Dr. Martin says that they could grow any day now. She is only on 1 antibiotic rather than the 3.
Well, I am going to stop for now. Leigha's bathroom is flooding water when the toilet gets flushed and I am waiting for the plumber. I just remembered something from many years ago, when I worked at Chabad Lubavitch. I called in late for work and exlained that my washing machine had flooded and I needed to clean up before I made it to work. Rabbi Doron calmly told me that water was a blessing. Over the years, whenever something would flood Bryan and I would tell each other, "Don't get mad, it's a blessing." So, I'm focusing on the positive and taking it as a good sign.
I really am praying for some cells to growwwwwwwwwwwwww!
Love, Mary
P.S. One of the boys on the unit, Jalen, got to leave today. He had his "confettie" parade. Lucky for him, Leigha was sleeping, because she had a can of silly string with his name on it! Please, please pray hard for Dylan's cells to grow. He is a teenager who had his transplant over 40 days ago, and so far, no donor cells are growing. If I'm not mistaken, they are trying to find a match for a second transplant, but that won't be necesary if we all pray very hard and his cells grow!
Wednesday, September 19, 2007 4:44 PM CDT
Day +15
Today has been a very good day. When Leigha's day nurse got here at 7:30 this morning, Leigha was still awake. She slept during the day yesterday, so she didn't sleep at all last night. She did her homework and was on the computer. At 1 PM I woke her up, because some of the nurses and kids were playing a card came in the lounge. It's called "Who Knew" or "Who's It" or something like that. Anyway, Leigha didn't want to get up, but was glad she did, because it was a lot of fun. Then, Trey, the music therapy guy had a cool session where they all make a rap song about food. Leigha's food was "arugala". It was interesting. Then the nurse walked in when the kids were laughing hysterically about mustard. I think it was something that you have to be on morphine to think is funny. Then Leigha starting schooling the other patients who didn't have morpine buttons how to score one, and the nurse had to leave because she said it was inappropriate to laugh at what Leigha was saying even though it was very funny. Then, after mucic, they played the card game again. I thought she was probably worn out at that point, but she ended up meeting David and Dylan for a video game challenge. (Naruto) This is the most active she has been in weeks!!
Ian is, as I type, playing his first football game of the season. I talked to him on the phone right before the game, and I didn't mention his ankle and niether did he. He was talking a lot of crap about how he was going to do some hard hitting and I would probably be able to hear pads hitting all the way in Durham.
I am walking around like a little old lady. I've done something to my back. At first I thought I had been drinking too much coffee. I never usually drink more than 1 cup each day. Since I've been here, I drink 3-4 cups a day, so I thought maybe my kidney was hurting, but when I explained the pain to Dr. Bryan, he told me that the back pain was too low to be my kidney. It could quite possibly be the sleeping conditions here. I sleep on a Murphey bed and for those of you who don't know what that is, it is a mattress that folds out of a giant file cabinet thingy.
The doctors were glad to see Leigha up and about today, and have come up with some new plans to get her sleeping at night and not all day. We'll see how that turns out!!!
Leigha is wanting the computer, so I will stop rambling for now!! Love, Mary
Tuesday, September 18, 2007 6:05 PM CDT
Day +14
Not alot to report today. Leigha was sick to her stomach last night. At 4:30 AM she got some ben/phen and finally we went to sleep. Then her alarm started going crazy with her O2 stats again, so she got put on oxygen. She skipped "school" today to rest and we didn't do activites, but she did walk 5 laps and sat in the recliner rather than being in the bed all day. The doctor said it was good for her lungs just to sit up in the chair. Her liver enzymes were about the same, just a little bit lower, and she is needing platelets 1-2 times daily. She saw Dr. Martin today and he said that maybe by next week, she will be able to look back and say, "Wow, I really felt bad last week, but I can tell I'm getting better." I can't wait for that day! He decribed her progress as being "in the middle of the road". I didn't really start thinking of how many ways he could have meant that until much later, when I was sitting in this room staring at the walls and recounting the ceiling tiles. Does it mean she is doing ok, like average? Or that she has half of the worst part behind her? Or like literally, she's in the middle of the road and better hope a car doesn't come!! I know I have too much time on my hands to think about things, and I just need to be thankful that things are going so well, so far, considering all she's been through.
Bryan and Ian are doing well. Bryan is actually cooking dinners at night!! And apparently doing dishes, too, unless Ian is covering for him. Ian has sprained his ankle pretty badly, and suffered through football practice yesterday, and is hoping he'll be able to play in the first game which is tomorrow. I feel so bad, because I was the one who had him at the skate park when he came to visit and told him to do the vert ramp.
Bryan, if you are reading this, I forgot to tell you that Leigha REALLY wants you to get the film developed and send her some pictures of her puppy. She misses him very bad and wants a picture for her hospital room.
Thank you everyone for all the messages in the guestbook. We feel very special to have so many people thinking about us and praying for us!!! Love, Mary
Monday, September 17, 2007 4:31 PM CDT
Day +13
We had kind of a scare today. Everything turned out ok, but at 8:30 this morning a tech came into Leigha's room rolling an ultrasound machine. It was a little unsettling because we had no idea why she was doing an ultrasound of Leigha's liver. I had not looked at her midnight labs, so I didn't know if her liver enzymes had gotten really high. Anyway, her levels had increased even on the Actigol, so they wanted to rule out VOD, a serious complication that can occur with transplant patients. We had to wait awhile for the results, but the good news is that her liver, kidneys, and spleen appear to be normal, but her gall bladder is full of "sludge". They will moniter this, but the drs. think it is because of the narcotics and the tpn.
After the ultrasound, there was one thing after another and Leigha just wanted to sleep. She did 500 steps on the cardio machine last night, got up in the middle of the night and read her book for hours, got woke up for the ultrasound. Then the physical therapist came in to check on her, then the cleaning lady came to do the room, then her teacher came by and woke her up to do her school work. It was all necesary things, but she was not in the mood to do anything but sleep. She had to get a platelet transfusion, and then when she finally drifted off to sleep, her moniter alarm kept going crazy because of apnea and low O2 stats. She went on oxygen and has been asleep ever since. She missed the activities today, but I think she needed the rest more.
Anyway, it all turned out ok, so we are thankful! We appreciate all the prayers more than you will ever know and enjoy reading the guestbook entries. Love, Mary
Monday, September 17, 2007 4:31 PM CDT
Day +13
We had kind of a scare today. Everything turned out ok, but at 8:30 this morning a tech came into Leigha's room rolling an ultrasound machine. It was a little unsettling because we had no idea why she was doing an ultrasound of Leigha's liver. I had not looked at her midnight labs, so I didn't know if her liver enzymes had gotten really high. Anyway, her levels had increased even on the Actigol, so they wanted to rule out VOD, a serious complication that can occur with transplant patients. We had to wait awhile for the results, but the good news is that her liver, kidneys, and spleen appear to be normal, but her gall bladder is full of "sludge". They will moniter this, but the drs. think it is because of the narcotics and the tpn.
After the ultrasound, there was one thing after another and Leigha just wanted to sleep. She did 500 steps on the cardio machine last night, got up in the middle of the night and read her book for hours, got woke up for the ultrasound. Then the physical therapist came in to check on her, then the cleaning lady came to do the room, then her teacher came by and woke her up to do her school work. It was all necesary things, but she was not in the mood to do anything but sleep. She had to get a platelet transfusion, and then when she finally drifted off to sleep, her moniter alarm kept going crazy because of apnea and low O2 stats. She went on oxygen and has been asleep ever since. She missed the activities today, but I think she needed the rest more.
Anyway, it all turned out ok, so we are thankful! We appreciate all the prayers more than you will ever know and enjoy reading the guestbook entries. Love, Mary
Sunday, September 16, 2007 11:29 AM CDT
Day +12
We slept until noon today!!! Leigha walked 10 laps yesterday. The doctor just came by the room and said that her liver enzymes are still elevated, but no worse that yesterday. She continues to need platelets daily, but her red count is dropping very slowly, so she has only needed blood one time. Her white count is still >O.1 which is pretty much nothing. The doctor says that he fully expects her to have some bone pain and fevers, and maybe require oxygen in the next 5 days, and he would like to see her white count go up to O.2 to show some action. What that all means is that we may have engraftment in the next 5 days. I told the nurses to wake me up the second her labs come back on that special day, no matter what time it is!
People ask me how we are dealing with this and how we are surviving financially since we have 2 households and 1 income instead of the other way around. I really don't have an answer that explains it, but we are hanging in there. I have made up my mind to put it in God's hands and care for Leigha, and try not to think about bills, and apparently that works, because everytime we wonder how something is going to get paid, it's like a miracle-it just appears right before we get into trouble!! Like I was saying yesterday, one day I will talk to Bryan and he'll tell me that he really needs to go get groceries, and the next day, he'll get a gift card to the grocery store. The people who sent money in honor of Leigha's tea party paid our utilities for the entire month, and last week Bryan was telling me about a bill he had gotten for auto insurance. I told him not to worry, that it would all work out and guess what. Yesterday, our very good friend, Chris Fulmer, called Bryan to draw names for a raffle that he had been working on. Some of our firefighter family had donated items to be raffled. Jeff Gore provided a beautiful chocolate lab puppy, Everette Long donated a shotgun, and Jason Feinstein gave a really nice pair of fire boots. (Please forgive me if I left anyone out, I get the info over the phone by Bryan!!) Anyway, that raffle ended the worry about the auto insurance. I just can't thank everyone enough for their support and prayers!! And thanks for signing the guestbook, it really brightens our day.
Well, Leigha and I might watch a movie. Who knows, we might walk a few laps, too!! Love, Mary
Saturday, September 15, 2007 1:46 PM CDT
Day 11
Leigha had to go on oxygen in the night. She doesn't need it when she is awake, just when she's sleeping. Too much morphine and you forget to breathe, I guess. Her liver enzymes are still high, so she's getting meds for that, and they added a med. for the fluid overload. She gets platelets everyday, but has only needed blood once. Her hemoglobin is holding pretty good. We watched tv last night (or I should say this morning) and she walked only 1 lap, but we'll make up for that tonight hopefully. She still hasn't eaten-even the smell or mention of food makes her sick, but she is on the tpn. Today is the last dose of methotrexate, so hopefully her throat and mucositus will soon be better. She doesn't have to eat b/c of the tpn, but that is just something else that is hard on her liver right now. We are just sitting around waiting for the dr. to make rounds. It is starting to get a little bit boring here, but I feel bad complaining about that, b/c things are going so good for Leigha so far. I don't eat in Leigha's room and don't like to leave her room, so I haven't really been eating on schedule here. I'm craving Chinese food, so me and one of the other Moms are going to order some for dinner. I have called Bryan like 3 times already today and he's called me a few times to. Hope my Conway people will keep an eye on my boys and make sure their clothes match when they are out in public and that they don't starve or get too skinny! Seriously, I don't think that's going to happen. Bryan has been on 2 major grocery buying excersions, one to Wal-mart with a giftcard from the "Circle of 7" (Bryan's girlfriends from high school who planned the tea party) and today he went to Food Lion with a card from the Colin Rabon Foundation. Thank you everyone for looking out for my guys while I'm gone!!! Much love and thanks, Mary
Friday, September 14, 2007 4:48 PM CDT
Day +10
No fevers since yesterday!!! She will stay on the new antibiotic for 3 days if she stays fever-free and she'll stay on the other 2 until she grows cells. Tomorrow is her last dose of methotrexate and after that, there will be nothing holding those cells back. GROW CELLS GROW!!!!
Today's only new issue was elevated liver enzymes which she started a med for and high glucose, which they adjusted her tpn (iv "food").
Even though we have these issues going on, all in all, she is doing well. A little boy coded early this morning, and it just made us thankful to be doing as well as we are doing. The little boy ended up being able to stay on this floor and not go to ICU, but please pray for him, he is only 1 1/2 months old.
Ian went to a birthday party today and is having Zack spend the night, so he is happy about that. He had to lay out of football practice on Friday due to his skateboard injuries and getting hit hard at football practice.
Leigha continues to enoy her mail, and her messages in her guestbook. She is zonked out and getting platelets right now, so I think I will join her in a nap. Last night we got up at midnight to walk laps and watch a few Viva la Bams. I have all ideas that we will be doing the same thing "tonight". Love, Mary
Thursday, September 13, 2007 3:46 PM CDT
Day+9
Leigha had fevers late last night, so she had to start Linezolid which is a pretty hard hitting antibiotic. I was worried about it affecting her engraftment, but after discussing it with her team, I realize that she has to have it. The doctors said that since she had a bone marrow transplant with more mature cells, versus a cord blood transplant, it should not stop engraftment. It is not being used to treat her known infection, but since she has continued to have fevers for 5 days, they want to make sure they don't allow another infection to get ahead of them, since Leigha has nothing to fight infection with. Vanc. would be the next antibiotic choice usually, but Leigha had an allergic reaction to it at Conway Hospital, plus since she is already on Tobramycin they didn't want to jeprodize her kindeys or hearing.
Leigha got up around 2pm to play bingo. She won on her first card, but we had to leave during the 2nd game b/c she felt bad. She has had Zofran, Ativan, and Ben-phen, so she has finally quit throwing up. She is about to get her platelets and I think I will take a nap with her.
Bryan was supposed to bring me some thank you cards and a list of people to send them to when him and Ian came to visit this weekend, but they aren't going to be able to come. Bryan has to be at home for the HVAC guys to come fix the ductwork upstairs. Plus he is going to try and find someone to hook up her air filtration and water purification systems. As long as they make it for next weekend, b/c the Hendrick Pit Crew is coming to 5200 to visit.
We are just starting to get our mail on a regualar basis here. Leigha has enjoyed her many get well cards and they are hung on the door where she can see them. Also, thanks Maria for the computer lap cushion thingy-she has been wanting one of those and Debbie, we got the prayer cloth;thanks to you and everyone at your church who is praying for Leigha. We appreciate all prayers and sign her book if you get a chance. Love, Mary
Wednesday, September 12, 2007 6:20 PM CDT
Day 8
Well, not a whole lot to report today. Leigha has been getting blood and platelets everyday, but that is to be expected. Cultures are still being drawn, but the last 3 are negative so far. I have my fingers crossed that the fevers have broken. She has been fever-free since this morning. Dr. Martin is happy with her progress so far. We are just waiting on cells to grow!
Leigha got up long enough this morning to participate in Saul's confetti parade. Only, she did not throw confetti at him, she shot an entire can of silly string at him as he passed. He was a mess of confetti and silly string! I'm going to miss talking to his mom here at the hospital, but I think we will be neighbor's(at the same apartments) when Leigha and I get discharged.
Other than the parade and 1 lap today, she has slept all day. She did the same thing yesterday, and got up in the middle of the night and we watched Lords of Dogtown. So, I'm going to get some rest now, so I can stay awake all night if Leigha chooses.
Tuesday, September 11, 2007 2:57 PM CDT
Day +7
It's hard to believe that it has been a whole week since Leigha's transplant. The time has gone by fairly quickly. Even though she doesn't feel the best, the doctors assure us that she is right on track. The cultures show that her infection is a gram negative infection that is sensitive to the antibiotic that she is taking. The second and third cultures of the lumins have come back negaitive so far, but she is still having fevers. I asked Dr. Martin if the infection could delay or affect the new cells from growing and he said that this sort of infection is fairly common and shouldn't effect that, like other infections could.
Her nurse said that Leigha's blood pressure perfect. Usually by this point, the bp is affected and a lot of the kids are on bp meds. Her organs (liver, kidney functions)are within normal range and that is very good.
She has slept most of the day. She has had meds for her fever and mouth/throat pain. I didn't wake her for music therapy and her teacher gave her the day off, but maybe tomorrow she will feel better.
From what I understand, cells could start growing as early as Saturday. (earlier than that could indicate that her own cells are growing back instead of the donors) She is on some meds to stop growth and some to help and it seems like a very fine line. When I used to read about a child having a transplant, I always thought the transplant day was the most crucial, but have found that what happens before and much after is very very important.
I miss Bryan and Ian very bad today. I had a dream last night that I was at the old Conway Elementary and both kids were little agian. I could even smell the place it was so vivid. All day I've been remembering when Ian was very little with his blond silky bowl cut, and Leigha with her cute little smile and those dresses she would let me buy for her back then, walking into Mrs. Boyd's kindergarten. I can remember it like it was yesterday!
Please sign the guestbook if you stop by. I love reading the messages from everyone. Love, Mary
Monday, September 10, 2007 8:31 PM CDT
Day +6
Hello Everyone, Leigha and I took a nap late this afternoon and I just woke up. (at 9:30pm) She seemed to be talking a little better, so I was happy that her throat was probably feeling better, but the nurse said it was most likely going to get worse, because she got methotrexate today. They offered to up her morphine, but she is going to wait until this dose doesn't help anymore. She is pushing her button a little more often, so either she is in more pain or it's not as effective as it was. We learn more and more about transplants everyday. We learned today that MUD (matched unrelated donors which is what Leigha had) tend to grow white cells faster.
Leigha got a break from school today. She did not feel like walking, but did 4 laps anyway. We took a nap from 12:30 until 2pm and then went to today's activity, Fun With Science. The kids followed assigned animal tracks down the hall to the Connection, where they made "footprints" of their animal out of a mold and plaster. They made boats out of craft sticks and raffia and had a boat race in "Lake 5200" which was a huge rubbermaid tub full of water. Leigha's came in 2nd. The next activity was tie dye, but she was tired by this time and just watched. Then the kids sat around the "campfire" in the dark (they had made a realistic looking fire out of tissue paper with "rocks" around it and flashing lights buried inside)and toasted marshmallows for smores. We had to bail out of there at that point, because Leigha still can't think about food yet. All in all, it was a nice day, but exhausting. The campfire theme was appropriate, because the whole unit is being redecorated as "Camp 5200". When we got here, it was all a beach theme, but you should see it now. The nurses, parents, and kids have been working on it all weekend and it's been transformed!
Let's see what else. Oh, Ian had his first football practice today. He hurt his ankle and wrist going down the vert ramp at the skatepark this weekend, but he toughed it out. I told Bryan to dig out the old camcorder, so he could tape some of Ian's practices and games.
Back to medical stuff: Leigha's fever was caused by a blood infection that is in all 3 lumins of her central line. She was started on a broad antibiotic yesterday, and they added Tobramycin (I'm sure I mangled that spelling) and may change that when the cultures grow more and they see if it is more sensitive to another antibiotic. The nurse and doctor said that it's not uncommon at this point. She has no immunity, so all the bacteria that a normal immune system can deal with, is just sitting in her body with nowhere to go. It could be from the mucocitus or something else.
Thanks for all the prayers. The little girl who I asked you to pray for (that had been here on and off for a year) got to go home today!!! The other boy who I asked you to pray for is feeling really bad with rash and fever from the ATG that he had to have before his upcoming transplant. Well, I didn't mean to write a book!! Love, Mary
Sunday, September 9, 2007 6:11 PM CDT
Day +5
I hate to update on top of Leigha's from Friday, but like she said, I don't know when she will do that again and I know everyone likes to be kept up to date on how she is feeling.
It was so good to see Bryan and Ian, but so hard seeing them leave!! Bryan stayed with Leigha both nights, and Ian and I caught up. We went to Raleigh to the indoor skatepark on Sat. and today, and we loved that place. It was the nicest one I've every been to. We stayed up late watching movies both nights and had a good time together.
Leigha and Bryan didn't have a chance to watch their movies on Friday, but watched Incredibles (Bryan's fave) and Dumb and Dumber last night.
Today, Leigha needed platelets again, and her mouth/throat sores are still very painful. She also started running a fever, so she got cultures done and is on antibiotic for at least 5 days, longer if the cultures are positive. I had to take her blanket away, b/c her fever was getting higher and she had to swallow tylonal, which is difficult for her. On a positive note, she drank 2 oz of water, which is the first thing she has had to drink in days. The nurse says that fevers are very normal at this stage of transplant; her body is just so run down and defenceless. Later, she will get fevers from the engraftment, but it is too soon for that. She has not walked yet today, and I hate to force her, but it's so important to keep her lungs clear.
I found out that the poker run that our friends are planning for us is going to take place at Beaver Bar on November 3rd, which happens to be Leigha's birthday. (not her 53rd b-day, but her other one)
Well, time to do some laundry see if my girl needs anything. Love, Mary
Friday, September 7, 2007 11:33 PM CDT
Heyy
Since mom didn't update today
I decided I would
Hehe Mom seems to be doing good with the whole update thing
So I'll be honest and tell you I prob. won't be dazzling you with my humor often.... :]
I love hearing from everybody
It's nice to know that everyone reads and thinks about us daily!
Whenever mom misses a day we get so many calls asking if everythings ok, it's nice.
Ummummumm I got up at like 12 today.
But I was up through the night with stomach aches.
Today was wayyy better than yesterday, I only had a bit of a stomach ache and they gave me some morphine so it was ok. haha
We went and made buttons from some old pics of Dude.
I really wished I had a more recent one
He's pretty small in the one we have.
My 160 lb. puppyyy
Speaking of buttons, I got my "chemistry set" today.
oh yes. I'm feelin pretty good right now, I must say.
At like 4:30 dad and Ian came. I missed Dad so much. And I guess I'm required by some set of universal laws to say that I missed Ian too. But within the first 5 mins. I think my blood pressure went up.
Dad brought my guitar so I'm finally gonna get started on that!
Dad is spending the night up here with me and mom went to the hotel with Ian to spend some time with her "icklebabyboy". lol sorry I just had to.
I showed dad some stuff around the unit, the daily happennings and whatnot.
As I was walking my 10 laps we came across one of the many outbreaks of sillystring war. Careful to avoid crossfire, I was not recognized as a target, as I was unarmed. The final result of the war yeilded no winner, only sillystring-covered pumps and teens. As I said, I was spared this because I was smart and left my can in the room haha
The joke now is to pile the sillystring you collect from yourself or your pump on your head for 'hair'
Oh the irony that passes for humor in cancer kids
Like the other night, we were all playing cards
and one of the poles started beeping, and everybody stops what they're doing and checks their pumps like its nothing
And then one of the kids goes over and beeps the nurse and tells her "we got a beeper in the connection" and then everybody goes back to cards like nothing happened. haha
Well me and dad got 2 movies to watch
The Incredibles, his favorite disney movie and like the only one I've seen him like actually watch on his own without me and Ian with him. No seriously, it happened.
And Dumb and Dumber, Which I love.
Oh, and to everyone who has not seen Blades of Glory
WATCH IT!!!!
It's totally worth it and it's so funny and I have only come across 2 people who have seen it! It makes nooo sense!We went and saw it twice at the theater. It's that cool. And I quote it all the time and nobody ever knows what I'm talking about and I get all these weird looks.
So.... yeh. lol
Well I think that's about it dudes.
Later
Leigha
Thursday, September 6, 2007 7:48 PM CDT
Day +2
Today started off pretty good. Leigha's teacher came by and then at 2:00 she went to play bingo. Her prize was a can of silly string. While the kids played bingo, some of the parents met to talk. After we got back, Leigha started getting another one of those bad stomach aches. She was in horrible pain. She got Zofran, Morphine, benedryl, and finally ativan. She curled up in her bed and apparently found a more comfortable condition, because when I went to cover her up, she told me not to touch anything or move her bed. She has been fast asleep ever since. She didn't walk laps today, but at least she got up to play bingo earlier. Hopefully, she will wake up in the middle of the night and want to walk and spray people with her silly string! I'm going to get some rest now, so I can keep up with her when she feels better. Love, Mary
Wednesday, September 5, 2007 9:49 PM CDT
Day +1
Leigha had her first day of school. She is an official North Carolina public school student. Her teacher, Jeff, comes to the bone marrow unit Mon.-Fri. He has 3 other students because there are 4 13 year olds on the unit right now.
Leigha felt pretty good today. She lost 6 pounds, but had not eaten in 4 days and walks at least 2 miles a day. They started her tpn last night, but increased it today and added lipids. She has those sores in her throat caused by mucositis and the dr. told her that he didn't want to alarm her, but they would get worse before they got better. He told her that there was no reason for her to be stoic, and that she should get pain meds at the onset of the pain, b/c she would require less medicine than if she lets it go. Plus if she is in pain, she will not want to walk or do her mouth care. She will be getting her "morpine button" in the next couple days. The doctor says she is doing well and to continue exercising, because that helps with so many things, especially keeping her lungs clear. She is getting enough nutrition through her iv, and the dr. told her that she could eat if she felt like it, but she probably wouldn't for awhile. He was surprised that she sent me to the store for taco ingredients, and she ate almost a whole taco for dinner. She also had a brownie and 1 chocolate bar.
We can't wait to see Bryan and Ian!! They are bringing Leigha's electric guitar and she will be getting private guitar lessons from the music therapist here. She got to play music today. There are activities each day, and Leigha gets a sticker in her passport for each one she attends. She can earn cool prizes like Best Buy gift cards and other things. There are activities for the parent's, too. I can use a pass to go work out at the big gym at Duke University. Leigha has her own personal "best buddy" who will sit with her if I decide to do that, or if I have to go to the store. Or the best buddy will go to the store for us if I don't want to leave Leigha. Two massage therapists come each Tuesday to massage parents, so I will probably take advantage of that next week. Leigha said today that she would much rather be home and not sick, but she said she's probably having as much fun as most people!! It was great to see her in such good spirits today. I even have a funny story: Last night, Saul, one of the other teenagers here asked Leigha if she had had nurse Julie yet. Leigha said she hadn't and asked why. He said that when she took temps. she put the thermometer way down in the ear and it hurt. Well, today Leigha sees that her nurse's name tag says Julie. She asked her "Are you the only Julie?". The nurse told her that there was 2 Julies. Leigha asked her, "Which one pokes the kid's brain when she takes temperatures?". Her nurse laughed and said, "Saul......" Later on, Leigha sees Saul, gagged with tape and tied to a chair, being rolled down the hall by nurse Julie, while everyone sprayed him with silly string. The Duke t-shirs say "kids rule" and that is definately the case here! Well, Leigha wants to check her myspace and find some shoes to order online, before her midnight card game. (yes, she meets up with a couple of the other night owls and plays cards at midnight)
Please pray for her to have good days like today!! Love, Mary
Tuesday, September 4, 2007 9:15 PM CDT
Day 0
Transplant Day!!! What a blessing!! I just wrote the longest journel entry ever and the computer ate it. I will try to remember some of what I said. Leigha got her transplant at about 1pm. Her nurse gave her pre-meds and Leigha stayed awake just long enough to pose with her "bag of life". It had a big peace sign on it and the word "GROOVY". She also made a sign that said "Happy 53rd birthday, Leigha!" (She is 13 and her donor is 40, so she said this is her 53rd b-day) She slept thru most of the transplant with some high blood pressure readings being the only complication, THANK GOD. The bp meds helped with that. The only other thing was the "transplant smell" It will go away sometime tomorrow, but I don't think I will ever make my cream corn pudding agian. The transplant took about 2 hours to run and the nurse stayed in the room to control the drip rate and record vitals literally every 5 minutes. Leigha didn't sleep all day like everyone predicted. She was up at about 5pm reading a book and watching tv. She got up a little later and walked 10 laps (I'm not kidding) and played 3 games of Uno with a bunch of the kids in the Connection. There were 3 13 year old boys and a little girl that's younger than Leigha. The little girl has been here for the better part of 1 whole year and she was laughing and playing Uno with all the other kids. She had a smile on her face when she told me that she had "had a few bumps in the road". Another teenage boy got here tonight and when I talked to his mom I found that this is his 2nd transplant. He was here in June. Please pray for these kids-they are truly amazing.
Leigha and I got to see our first"confetti parade". A little boy got discharged today and all the nurses, drs, and patients who were able (Leigha watched from her window) stood on either side of the hall and threw confetti and blew bubbles and took pictures of him. People were laughing and crying and it was very touching and also gave me hope that yes, she will get better and we too will be having a parade one day. Just pray for Leigha to stay healthy and strong and for those cells to GROW!!
Thank you everyone who attended Leigha's tea party, and thanks for your comments, calls, and prayers. We truly appreciate them.
Bryan, I may have you start doing these updates, because you certainly have a way with words!!!
A very thankful, Mary
Monday, September 3, 2007 2:33 PM CDT
Day -1
Leigha feels much better today. She has started developing the mucositis and that is probably not going to be the most fun. She has not eaten in the past 2 days, but tomorrow she goes on her tpn plus she is getting fluids. She has mostly slept today and laid around in bed, but that is an improvement from yesterday! Her nurse is going to disconnect her from her 7 iv pumps, so she can walk laps without the pole.
Tomorrow is the BIG day!!! Leigha will get a lot of pre-meds to prevent allergic reaction to the preservatives in the bone marrow. The nurse stays in the room during the entire transplant and the doctor is on the bone marrow unit for the entire time. Common side effects are hypertension. The nurse says it is unusual for the patient not to have to get some meds for high blood pressure. They usually give Lasix for the fluid retention that is common from getting such high volumes of fluid, blood, and the actual bone marrow itself is a large volume.
Leigha will most likely sleep through the transfusion, because of the huge amount of benedryl she'll recieve. We don't know what time this will happen, but probably some time in the early afternoon. We'll post pictures as soon as we can.
Leigha and I will be thinking of everyone during the tea party tonight. If you want to send her pictures of yourself at the tea party, we can hang them on her bulletin board in the room. She'd like that!
Thanks for all the prayers and please keep them coming!!!
Love, Mary
Sunday, September 2, 2007 5:47 PM CDT
Day -2
Leigha is starting to feel the effects of her treatments. As much energy as she had last night, it was a surprise that she felt so bad today. I woke her up at 2pm, because Dylan, one of the boys down the hall wanted her to come play guitar hero. She had a horrible headache. She got an oxycodone, but then threw up. She got Zofran and Ativan for that, but she was still feeling horrible with a stomach ache. Kettie and Theresa, her nurses today, gave her ben-phen which knocked her out. I'm hoping she will sleep for a few hours and wake up wanting to walk laps all night. I guess today was a small eye-opener for what lies ahead. I think I have been trying to convince myself that Leigha was going to be the exception to the rule and not have the mouth sores, vomitting. high bp, kidney/liver problems, the list goes on. Although it's good to be optimistic, it's probably unhealthy for me to think this way, because I need to be ready when these things happen, so I can deal with them and help her deal with them. Don't worry, I'm not losing my positive attitude, just being realistic.
Bryan and Ian were home to go to church today. I miss being able to go as a family. After church, they went out to eat and to the skate park. I truly can't imagine being away from them for several more months, but I guess we just need to take one day at a time. When Leigha is feeling good, it is easier to deal with things, but when she feels bad, it makes me think about things too much.
I have met a lot of nice people here and everyone is going through transplant if they are on this floor. There are young babies and the oldest kid that I know of is 17. The kids who are able to, walk up and down the hallways or play video games or board games in the "Connection" as they call it. There are other doors that I haven't seen open, where the kids are too sick to come out or they are on contact isolation. The parents that I've met are all very nice and there are people from all over the world here. Most offer a smile, but you can see the fear in everyone's eyes if you look hard enough. Or the weary look that comes from caring for and worrying about your child constantly. One day of Leigha's feeling bad and I can already see that weary look in the mirror. Please pray for Leigha and all the kids here on 5200 who are battling cancer. And take a minute to hug your child or husband or mother or whoever and to be thankful for your blessings. I am lucky to have the best family in the whole world and just thinking about them makes me feel better!
Kind of a long update tonight, with no funny stories, but hopefully I"ll have some for you tomorrow. I'm posting a poem that I found and it just makes me cry everytime I read it, but it also makes me feel stronger if that makes any sense:
THE CHOSEN MOTHERS
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.
Did you ever wonder how mothers of children with life threatening illnesses are chosen?
Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation.
As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."
Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy."
"Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."
"But, does she have patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair.
Once the shock and resentment wears off, she will handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world an that's not going to be easy." "But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps -"Selfishness? is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side."
"And what about her patron Saint?" asks the angel.
His pen poised in mid-air.God smiles
"A mirror will suffice."
- Erma Bombeck
Saturday, September 1, 2007 7:18 PM CDT
Last night after I wrote our journal entry, Leigha walked more laps (a total of 20). We had a good night watching tv and doing laps. I went to bed late, but apparently Leigha stayed up much later, because there was a 750 piece puzzle that had the entire outer frame and quite a bit of the center completed. This morning she met her day nurses, and they were both from MUSC-Theresa and Kettie. They took great care of her today-I don't know how they can keep all of her iv meds straight. She has so many meds going at once it makes my head spin!! Leigha's neighbor told her last night to take advantage of doing laps while her iv pole was "light" because it will get much heavier as time goes on. Today he gave Leigha a can of silly string and I feel sorry for the nurses. They are really good sports, they don't look a bit annoyed to have teenagers spraying their hair full of silly string. Leigha did 30 laps this morning, and she is going to try to get in a few more miles tonight. She says she wants to get a lot of miles in before she starts feeling too bad to walk.
Bryan and Ian worked together today. Bryan was building a deck/ramp and took Ian with him to the job, and Ian ended up being a big help to him. I remember telling Ian a long time ago how nice it was that his Dad could build anything, fix anything around the house, and work on the cars. I told him he should learn from his father how to do all those things because one day his wife would appreciate it. Bryan told him that his life would be alot easier if he didn't learn. I wonder what he means by that?............Anyway, I think it's cool that Ian helped, because he could have gone swimming instead.
Well, Leigha is wanting to go walk now, so I'll update more tomorrow!!
PS. Debbie, we would love to have a new prayer cloth; Bryan is actually going to be mailing a package out to Leigha on Tues. so he could mail it for you. Thank you!
Friday, August 31, 2007 6:18 PM CDT
Thank you Bryan for giving the update while we were without a computer. You did a wonderful job and I miss you and Ian biggest and the much!!
Leigha had her last radiation treatment this afternoon. We are all settled into the bonemarrow unit. If anyone wants to write to Leigha, her address is: Duke University Medical Center, Leigha Childress, 2100 Erwin Rd., PBMTU-Room 5205, Durham, NC 27705. When we come into the bone marrow unit, there are double doors and only one can be opened at a time, b/c of the special ventilation. There are lockers, shoe covers, and sinks to wash your hands well. Leigha's room is small, but convenient. I guess I would compare it to a cabin on a cruise ship, small but somehow everything fits. (Only there is no ocean, or great food, or casino)There is a bathroom that only Leigha can use, a fridge for her food only, and game systems, laptop, vcr/dvd player. We brought some personal items from home, like some posters, her autographed Bam pictures, and her lava lamp. Also, one of her friends is putting together a care package of pictures and greetings from her friends to put on her bulletin boards. Bryan is taking some pictures of Dude (her mastiff puppy who is pushing 200lbs) There is a room called the Connection that has games, movies, etc, and is a place for the patients to hang out together. Leigha can leave her room, b/c the entire unit has special filtration, she just has to wear a mask if she leaves her room. There is a full kitchen and dining room that the parents share, and also a bathroom that all the parents share. Exercise is important and Leigha already has 3 laps in!!There is also an exercise room with treadmill and bike, etc. She has started her antinausea meds and fluids. Heparin (to prevent VOD) and chemo (cytoxin) start tomorrow. TPN (nourishment thru iv) start after transplant. They aren't concerned about her lack of appetite and tonight she ate a whole bowl of Lucky Charms (with special milk-she has started her neutropenic diet) Well, I'll stop rambling for now. I might take a nap-it was a big day moving from the apartment.
Thursday, August 30, 2007 12:29 AM CDT
Hello all,sorry for the lack of updates.Our new laptop has had some problems (imagine that) and we havent had access to a computer.Leigha has done relatively well with her radiation treatments,with the exception of jaw pain in her salivary glands, and some nausia.The doctor said approximately 1 in 10 people experience the jaw pain and the nausia is common.Leigha continues to be strong and in good spirits.We will be getting admitted this Friday the 31st,followed by two days of chemotherapy on Sat & Sun.Monday is going to be a day of rest for Leigha and Tuesday the 2nd will be the transplant day.I will try to update more often after I correct the problem with the laptop.Thanks for all your prayers and support,Mary,Leigha,Bryan,and Ian.
Tuesday, August 28, 2007 10:16 AM CDT
Leigha had her second radiation treatment at 8am. She jammed to CKY and Beck. Yesterday, they took several pictures of Leigha with a digital camera. We didn't really question why they were doing it, we just thought it's because she's so hot that they wanted pictures of her. One of the pictures was taken right after her first treatment. Leigha is double jointed and thought it would be funny to wait until her first treatment was done, and turn her arms inside out and say, "What have you done to me?" like she had developed some kind of super power or something. Well, it freaked the ladies out that Leigha could do that, and they took the picture of her with her arms all contorted. Well, since radiation patients don't wear arm bands, their picture is their id, so when the screen pops up with Leigha's name and other info, guess which picture they used for her id? When they asked what Leigha was going to do when she finished school, I told them that she was going to be rich and famous. Leigha proceeded to tell them that if I treated her well, she would build me a huge guesthouse on her mansion compound and if I didn't she was going to put me in a nursing home. I swear half the people here probably think we are crazy for having so much fun during such a time. Yesterday, when I asked Leigha if she felt ok after her treatment,she said, "Yeah, see.." and she hiked her pants up like an old man and galloped down the hall.
I don't think mentioned our "photo challenge". I made the mistake of bringing the disposable camera in Leigha's room a few days ago and taking her picture while she was brushing her teeth. She then surprised me by taking one while I was chewing food. Then it became a competition, where the only rule is: no toilet or getting dressed pictures. Well, I was reading in bed late one night, and I sensed that someone was watching me. I knew that I had locked all the windows and doors, but it was still kind of creepy, so I got up to investigate. As soon as I walked around the corner into the living room, all I see is a big flash go off in my face (this is like 2am) Leigha said I screamed like a little girl. I will get her back!!
Well, I'm going to try to nap before her 2pm radiation. Oh, and Karen F. in case you were wondering what Leigha had for lunch, you can just start laughing!!!!
Monday, August 27, 2007 10:30 PM CDT
This will be a quick update, because Leigha wants me to go in the livingroom and watch Family Guy with her before she goes to bed. She is going to bed "early" tonight since we had such a busy day.
We went to clinic for pre-TBI labs. They did lots of labs including cultutres from all 3 of her lines. Today she told me that her ear hurt a little so I made sure the dr. knew before she started the radiation in case it was an infection or something. One nurse pract. thought that it was scar tissue, and another thought that it could be infection, so after radiation we went to the ENT. Radiation went really well. I don't know what I expected, but it really wasn't so bad. Most of the time was spent measuring and positioning Leigha. She burnt a cd last night and had it in the room with her. I watched from the next room over the moniter while she got 5 minutes on each side. The ear dr. put her on drops just in case. So far, she feels pretty good. She hasn't been sick yet (Thank God)and ate tacos for dinner. (yes, we have had tacos 3 times this week!) She says she feels a bit tired, but so far, so good. We go tomorrow at 8am and then at 2pm with clinic in between visits.
Ian had a pretty good first day of school. Bryan had a good first day at admin and the boys ate at Ryans. (Surprise!)
I can't tell you how much Leigha and I enjoy reading your guestbook entries. It's so good hearing from everybody!!! More tomorrow!!
Sunday, August 26, 2007 12:45 AM CDT
I didn't update yesterday, because Leigha and I have just been taking it easy. We stay up late, sleep late, and watch alot of telivision! Leigha's appetite has finally come back, but everyone tells us that between the radiation that starts on Monday and the chemo she will get right afterwards, that she will not have any appetite. It's not just the nausea, but it causes mouth sores that can even go into your throat and stomach. She will start her tpn soon which is iv nourishment that is given continuously through her central line. I have been feeding her as much as possible this weekend. It is not unusual for us to have a 2nd dinner. I made tacos at midnight on Friday! I have not been following my South Beach diet and pretty much live in sweat pants now, but I'll have time to work on that over the next couple months. (Don't get scared, Bryan)
I spoke the the guys yesterday, several times actually, and learned that some of my fears were not unfounded. I asked Ian if he knew what he wanted to where on the first day of school, and he said that he would were a pair of his new plaid shorts and his blue Hollister shirt, but he didn't know where the Hollister shirt was. I told him that if it wasn't hanging in his closet (where I left it) then it was probably in the dirty clothes. His father spoke up and very proudly said that there was nothing in the dirty clothes, he had done all the laundry. Later in the coversation, I learned that the entire setee in the hallway was full of clothes that had just been dumped there from the dryer all week. Bryan says there is no need to fold them and put them away, because they are just going to get worn again pretty soon. :) Be advised, guys, that I may be sending a spy to the house to check on things!!!!
Leigha and I decided that we are going to co-write a book while we are in the hospital. She has also been doing a lot of sketching in her artbook. We will keep you posted on our progress. Love, Mary
Friday, August 24, 2007 9:12 PM CDT
We slept in today. Leigha had labs and check up with Dr. Prassad. Wendy, the nurse coordinator went over what to expect with radiation, admission, and meds during transplant and treatment. Leigha's labs were good except her magnesium is still low so they increased the dose.
I had a message from the donor who wished Leigha the best of luck and asked that we give him updates on her progress. I will be so pleased to do that. I have actually been working on a letter to send to him, but there are so many rules. I can't mention any names, where we are, the weather, where we work/ go to school, the exact nature of Leigha's illness, etc. I understand why the rules are in place. I understand it is to protect the privacy of all parties involved, but it's nice to know that this donor wants to be kept informed. I won't overwhelm him with details, but am trying to come up with a letter that gives him an idea of the person whose life he is helping to save and express the gratitude that we feel. During the first year, all contact has to go through our nurse coordinator and the bone marrow registry. After that, if all parties agree, you have the opportunity to meet each other.
Leigha was pleased today to find out that all of her blood draws and meds during transplant (including the G-CSF to increase counts) will be administered through her central line. We were always told that was not an option. The nurse also told us that the chemo she would be getting pre-transplant had a 1 in 10,000 chance of "making her heart wall disinigrate". The drug is cytoxin and she recieved it four other times and we were never informed of the side affects. Please pray that Leigha does well with the radiation and chemo and keeps infection away while her new cells grow!! Once she found out that all meds were going thru her central line, she was fine. She said she is not worried about feeling bad, cuz thats what pain meds are for. (She gets her own special morphine button) There is also an incentive program to get the kids up and moving around. They give rewards and post who does the most laps around the bone marrow unit, and she says she is going to break the record.
Thank you all for stopping by and for all the messages on the guestbook. We have been on a CSI Miami marathon for the last 2 nights. We have had our fill of sappy movies for awhile I guess. Last night there was some wierd Japanese animation show on Cartoon Network that was really the strangest thing I've seen on tv, but I fell asleep.
On the home front: Ian and Bryan went to open house at the elementary school and met Ian's teacher. They agree that she seems very nice. Also, Ian was pleased that one of his good friends is in his class this year.
Goodnight!! Love, Mary
Thursday, August 23, 2007 3:11 PM CDT
Bryan and Ian went back to Conway yesterday. Bryan had to work and Ian will be starting school on Monday. Soon Bryan will start working 8 hour days instead of 24 hour shifts which will make it easier for him to take care of Ian. I bought Ian's school clothes before I left, and my friend, Leslie, is picking up his supplies. Leslie is also the mother of one of Ian's best friends, and their house is Ian's home away from home, so it is comforting to know that Ian will have a "mother figure" while I'm away. I'm sure he and Bryan will get along fine, but it is a little scary to think about 2 dudes living alone for several months. Do they even know how to put laundry away, or how to scrub a toilet? Who will wake them up when they turn the alarm off and go back to sleep? Will their clothes match? Will they watch Rambo movies and eat fast food every meal? Sometimes as Leigha and I watch tv in our apartment, and listen to the sounds coming through the ceiling (I swear the people above us must have 12 children and they train day and night to be sumu wrestlers) I imagine our nice quiet homey newly remodeled house in Conway and I get tears in my eyes. So, even if the guys get a little messy, we'll be glad to be home.
In the meanwhile, we are making the best of things here. Last night's chick flick was The Notebook. We also watched CKY4 which balanced the sad movie with some sick twisted Bam style humor.
Today we were finished with appointments at about 1pm and after dinner plan to watch tonight's chick flick "Fried Green Tomatoes". Then we will possibly balance it out with something with Will Ferrell or Adam Sandler.
Tomorrow is labs only and Monday is when the radiation starts. Please pray that Leigha doesn't get too sick from the radiation. Sign the guestbook if you get a chance so we'll know who stopped by!! Love, Mary
Wednesday, August 22, 2007 12:23 AM CDT
We have really enjoyed all the guestbook messages. It makes us feel "connected". We ended up going to the mall Monday. Leigha's "one more outfit" turned into about 3 more. After the mall we went to a Japanese steakhouse called Kankis (or something like that) It was really good, and it was the first place I have ever seen fried giozas. My mother learned to make them in Okinawa and I have made them a few times over the years, but never have I seen them in a restaurant. They were delicious.
Tuesday, Leigha had labs and abdominal ultrasound. The labs showed low magnesium, so she had to get a 1 hour infusion. Tuesday night was low key, with Leigha on the computer in her room and Bryan, Ian, and me watching Zathura.
Today, we met with Dr. Prassad and Wendy, our nurse coordinator. Leigha's ultrasound, labs, and everything looks good. She will have to take a magnesium supplement, but that is not unusual. The donor cells are at Duke in the freezer and the cells look good according to Dr. Prassad. Our whole family toured the bone marrow unit, which has a kitchen, washer, dryer, family lounge, patient lounge. There are many programs and activites for Leigha, and her room will have a lap top and game system. We will be allowed to have our netflix discs if I wipe them down and handle them.
From here on out, until admission to the bone marrow unit, we will be staying at the apartment other than going to appointments (where Leigha will wear a mask) I will be preparing meals at home rather that eating out. Once radiation starts, her counts will drop and her immune system will not be functioning very well, and we don't want to risk her getting sick right before transplant.
Please keep the prayers coming and if you check in with us, please sign the guestbook; we love hearing from you!!!
Monday, August 20, 2007 11:19 AM CDT
Daddy is here!! He went with us to get Leigha's line care done (which only took 10 minutes) Then Leigha was craving Outback steak, so that's where we went. When we got back to the apartment, it was almost like being at home: Leigha was in her room on the computer, Ian had all his sigma 6 men spread over the table and floors doing combat, Bryan was watching a marathon of Ice Road Truckers or whatever that is on the History channel, and I was cleaning. See, we've established a routine already!!
Today, Leigha has labs and wants to wear a mask and go to the mall for 1 more outfit. She says I didn't pack enough, but hardly any of her clothes fit since she lost weight, plus when we go in the hospital there is only enough room for a week's worth of clothes. I'm sure we will find room for 1 more outfit!!!
It's nice having everyone here together and I want to enjoy every minute of it. Thanks for checking on us and please sign Leigha's guestbook.
Saturday, August 18, 2007 8:44 PM CDT
Leigha and I just finished watching Divine Secrets of the Ya Ya Sisterhood. Ian decided he'd rather leave the room than endure a chick flick, but Leigha and I enjoyed it. Netflix is working out really good for us. We've got a bunch of skateboard movies coming on Monday. Today we slept in (Leigha only had dressing/line care, so I changed her appointment from 9am to 4 pm) We were the only people at the clinic, so we made tomorrows appointment for the same time. The nurses are so very good to Leigha. She was so worried about having all new people take care of her, but she has gotten very comfortable here.
All in all, it was a very peaceful day, with the only excitement being the removal of a baby, tiny tick that had somehow found itself attatched to Ian. I swear, it was so small we never would have noticed it, if it hadn't hurt him.
I just got off the phone with Bryan. He is coming to see us tomorrow for a few days. We are used to him working his 24 hour shift, but we miss him if it's more than a day, plus the many miles make us miss him even more. His family leave act has been turned in and I don't think there should be any problem. He will be taking Ian home with him after this visit, because school starts soon. Well, I am getting kicked off of the computer, and I wanted to tell you all about the tea party, but it will have to wait until tomorrow!! Goodnight!
PS Happy Birthday to my Mom- I miss you!!
Friday, August 17, 2007 7:04 PM CDT
After Leigha got home from surgery yesterday, she slept ALL day. She woke up right after I went to bed (midnight)I heard her and Ian in the living room playing game cube and making noise. It sounded like they were having a party. I didn't say anything, b/c it was nice that they were getting along. Well, this morning when I went to Leigha's room to "wake" her (@ 7am) she said, "You've got to be kidding me; I haven't fallen asleep yet." Ian was difficult to wake up as well. Tonight I hope to watch a movie together and all go to sleep kind of early (for us anyway!) Bryan signed us up for Netflix, and it has been very convenient. We can order 3 movies at a time and they arrive in 1-2 days, or we can watch some movies on the computer.
Today Leigha had her central line dressing changed and line flushed, had her pentamadine treatment (she had it in a plastic tent and the nurse gave her and Ian markers so they could play tic tac toe on the plastic tent. Dr. Prassad met with Leigha and told her that all her test results show that she is very healthy going into transplant. He went over some of what she could expect, and assured her that all the drs. and nurses would be there for her no matter what she needs. Then Leigha signed her part of the consents, and we went for her eye appointment that took longer than we had planned, but all went well. Leigha was impressed that the OR people called to see how she felt after her surgery. She is still sore in her neck and at the site where they placed the central line, but she is very tough!! Another thing that was impressive: When Leigha was on the operating table, there were 3 big flat screen tvs playing Shrek from every angle. She was asleep before Shrek even made it out of the outhouse, but it was still kind of cool. At the dentist there was a flat screen on the ceiling playing Cheaper by the Dozen 2.
Tomorrow is dressing change and flush at 9 and the rest of the day free. That's another great thing. The clinic is open 8-8 even on weekends and holidays. As soon as the home health nurse comes by, I will be able to care for her line here at the apt. and we can have next weekend "off".
Thanks for checking in and for signing the guestbook. Karen, if you are reading this: as nice as this place is, we truly miss you taking such good care of us!XXXXOOOO
Thursday, August 16, 2007 6:36 PM CDT
Leigha did great in surgery. She had her broviac placed and her port removed. While she was in surgery, Bryan and I met with the dr. and went over the consent forms. I cannot stress how pleased we are with this hospital. Bryan and I both have such confidence in her doctors and it takes a lot of stress off of us. There are some drs and nurses from Charleston that we miss, but I am thankful she is having her transplant here at Duke. I think there are good drs in Charleston, but they seem overwelmed by the huge number of new patients there.
Tomorrow Leigha will have the dressing on her new central line changed and they will teach us how to care for it. Then Dr. Prassad will give her an exam and then we will go to Duke Eye Ctr. for her vision test.
We will update more tomorrow. Ian and I are going to watch a movie.
Thursday, August 16, 2007 6:36 PM CDT
Leigha did great in surgery. She had her broviac placed and her port removed. While she was in surgery, Bryan and I met with the dr. and went over the consent forms. I cannot stress how pleased we are with this hospital. Bryan and I both have such confidence in her doctors and it takes a lot of stress off of us. There are some drs and nurses from Charleston that we miss, but I am thankful she is having her transplant here at Duke. I think there are good drs in Charleston, but they seem overwelmed by the huge number of new patients there.
Tomorrow Leigha will have the dressing on her new central line changed and they will teach us how to care for it. Then Dr. Prassad will give her an exam and then we will go to Duke Eye Ctr. for her vision test.
We will update more tomorrow. Ian and I are going to watch a movie.
Wednesday, August 15, 2007 10:00 PM CDT
Today was a good day. We met with the radiation oncologist to discuss the upcoming TBI. We met with Dr. Prasad to discuss the transplant. All of Leigha's test results have come back good so far, and the preliminary results for the bone marrow and lp look good so far. They wanted to make sure she was still in remission, b/c there were some blasts in her blood sample, but they were apparently from the high dose chemo she recieved last round. Thank God!! Dr. Prasad feels she is in good shape to go to transplant, probably on Sept. 4. Tomorrow, Leigha gets her broviac. We need to be in the operating room at 9:30.
Yesterday, we had a very nice visit with Pop Pop and Grandma Barbara who drove from Gordonsville, VA to see us and took us out to Outback for dinner. It was very nice to see them!
Today we took advantage of good counts, and went to SouthPoint mall. Leigha and I told Bryan it was drs. orders since Leigha needed sweat pants (or knit pants with no metal for her radiation treatments) We also picked up a few more books for when we're in isolation.
Thanks to you all for checking in on us, signing the guestbook, and sending your prayers this way. It means a lot.
Monday, August 13, 2007 9:47 PM CDT
Bryan came back tonight and brought us a wonderful thing: a laptop. We were all going into withdrawals!! I will do a more elaborate update tomorrow, but here's a quick update for now. Friday Bryan left for Conway to work. He worked 48 hours so he could have the next 4 days off with us in Durham. Ian stayed here with us. Friday was a busy day with kidney function tests, xrays and ct scans. We had to stay in a hotel b/c of some problems at the apt. We moved into a new unit on Sat. so some of you may have our old phone #. We relaxed Sat. nite after the move and on Sunday. Today we had a talk with anesthesia, Leigha had a dental appt. and she needed 2 units of blood. The rest of her counts were great. The dr. moved her bone marrow biopsy and lumbar punture to tomorrow rather than Thurs. Bryan got to the hospital while Leigha was getting her blood. Him and Ian went back to the apartment. When Leigha and I arrived, they had balloons and a B-day cake for me. It was a nice surprise. We went out to eat at Cracker Barrel where I ate way too much. Tomorrow Dad and Barbara are coming to visit and we are going to Outback. I'll update more later. Love, Mary
Friday, August 10, 2007 1:24 PM CDT
This will be very short as I only have a few minutes on this computer. We are settled into our apartment. Leigha is recieving wonderful care at Duke. Each day is very full of appointments, but everything is well scheduled. Today she is getting kidney function tests, cts, and chest xray. Yesterday she had echo, ekg, and pulmonarey functions. Yesterday she had 23 vials of blood drawn!!!! We have the weekend off and dental appointments on Mon. I'll update later.
Wednesday, August 8, 2007 0:09 AM CDT
The car is gassed up and clean and we are all packed. We'll be leaving in the morning. Tomorrow we'll just be settling into our apartment and getting some groceries. The lodging coordinator at Duke called me yesterday with the name of the apartment and our new phone number. She handled everything for us, which was a huge help. Leigha's appointments start on Thursday, and there are plenty of them!!
We had a good day today. We slept a little later than I'd planned. Bryan got some paperwork straight for his work and finally got his haircut. He's been threatening to shave his head bald again, but Leigha and I tell him how much more handsome he is with hair. Her exact words were, "Dad, you look scary when your bald" I registered Ian for school and later on we all went to eat at Outback, which was Leigha's choice. Ian doesn't care for it. Last time we were there he ran out of Mello Yellow, grabbed my glass and chugged my drink. He gasped and turned red and said,"that's not lemonade". (It was petron and Grand Marnier margarita) He doesn't just assume it's lemonade anymore. After dinner, we came home and I took an hour nap on the hammock.(sleeping off my lemonade!!) It was kind of hot, but I'm really going to miss my front porch. Then we went to the new movie theater in Conway and saw Simpsons. There was only 4 other people in the theater. Afterwards we had the entire arcade to ourselves and cleaned out the claw. It was nice spending time together and the day flew by!!! I will update as soon as possible. I know the bone marrow unit has laptops and we will be admitted on the 31st. I'm not sure if we will have computer access for her outpatient appointments. OUr appartment has internet, but Leigha's laptop has stopped working. Maybe Bryan can update. We'll figure something out. Thanks for checking on us!! Love, Mary
Monday, August 6, 2007 1:17 AM CDT
Today went by too fast! I went back to sleep after giving Leigha her meds. Bryan had to work, and Ian and I got up after noon. I made pancakes and got Leigha up. I got most of the packing done just to get it over with. It's kind of hard to pack when there will be limited space for the first month or so, and we will need clothes for different seasons. Leigha wanted Amores but they were closed, so I guess we will have pizza tomorrow. I had to call the AC repairman b/c the brand new system we had put upstairs is not cooling. We've had repairmen out her at least 8 times. It is a ton and a half unit w/ all new duct work and it was set on 72, but the whole upstairs was 82. The first time the repairman came he said there was nothing wrong, it would just take time to cool, then there was too much freon, then not enough, then the duct work wasn't hooked up, then they said it was "doing the best it could" One guy said that it is a flaw in the way they ran the duct work. Tonight's repairman closed the ducts in the library and shut the door, so Leigha's room would cool. That just doesn't seem right to me!!! Enough about that; After dinner, Leigha made me go buy saran wrap. She is determined to saran wrap Ian to his bed before we go. I hope he doesn't get too mad at her. I will be sure to take pix!! Leigha and I watched John, and then the three of us lost track of time working a new puzzle. We started at 11:00 and before I knew it, it was 2:30. I only have a few errands tomorrow and am really looking forward to a nice family day. I don't know what we will be doing, but I'll keep you posted. Love, Mary
Saturday, August 4, 2007 8:35 PM CDT
WE ARE HOME!!! At least for a couple of days. Leigha is feeling alot better and we are both glad to be home. Bryan and Ian had cleaned the house, gotten groceries, and Bryan even cooked dinner. (Leigha's new favorite, tacos, of course.) Leigha is upstairs enjoying her new room, and I have been trying to get things together to pack for our trip, so I can figure out what I need to buy. I am getting ready to give Leigha her meds and kick back and watch John from Cinn. with Bryan. I love that show. Oh, Dude seemed like he gained 20 lbs. while we were away. I know he's getting close to 150. Pretty impressive for a 9 month old puppy, huh? Well, I'll update more later, I am ready to collapse!!!!!!!!!! Love, Mary
Friday, August 3, 2007 8:43 PM CDT
The counts are slowly but surely coming up. We may go home this weekend. The nurse went over how to administer IV antibiotic with me since it has been awhile since I've had to do that. We will go to Duke on Wednesday for a couple weeks of outpatient procedures that will ready Leigha for transplant. They plan on doing her radiation outpatient and admitting her at the end of the month for the transplant. Once we go to Durham on Wednesday, we will more than likely be there for 3-6 months. I can't imagine being away from home that long. I am working on ways to decorate Leigha's transplant room that will cheer her up and keep her from being so homesick. She just had her room at home remodelled (thanks to Flash at Courageous Kidz and some of her wonderful friends)It will be hard for her to leave it!! I will post pix asap and tell you all about it, but I have just a few minutes on this computer. Bryan is working on getting her a laptop and a web cam and a web cam for our home computer, so we can "talk" to each other. Everyone keeps asking what they can do to help and I really don't know what to say, except please pray for Leigha to have a speedy recovery, and for Bryan and Ian to be ok on their own for so long!! If anyone wants to feed them, I'm sure they would appreciate that. I worry about them eating fast food everynight!!! I'll let you know when we get home. Love, Mary
Wednesday, August 1, 2007 5:05 PM CDT
Well, Leigha's white blood cell count came up just a little, but her platelets and hemoglobin fell again. She got blood today and probably more platelets tomorrow. MUSC has a new attending who is over pediatric bone marrow. Her name is Dr. Husbeth (I think I'm spelling that right) and she is from Johns Hopkins. She seems very informed and confident and I like how when I ask her a question, she looks me in the eye and answers it. She has scheduled a bone marrow biopsy for Leigha for Monday. If her counts come up on their own, she will obviously not need it and we will be in Durham getting her pre-transplant work-up. I hope to at least have a couple days at home to pack, relax, and spend time together as a family. I spoke to the lodging coordinator from Duke today and she is working on finding us a suitable apartment for when we "move" to NC. Leigha and I read over the info about transplants today and found out that when the bone marrow is frozen, as hers will be since her donor can only donate on Aug. 16th, when it is thawed and given, it smells like creamed corn, garlic, stewed tomatoes. We asked the dr. today if it smelled like one of those things or all of the above and she said to add smelly socks and that just about covered it. Bryan called me from Walmart today to check on Leigha. He and Ian were getting groceries. I, overprotective mom that I am, said "Make sure you don't let him out of your sight in the store." and he replied, "I can just barely see him 2 aisles down; He's standing there with some big hairy guy who is touching Ian's butt". (not really) His way of saying not to worry, he's got it under control. He and Ian have been spending some quality time together. They have been trying out different skate parks and the one they went to yesterday is their favorite so far I guess. Bryan will be taking his family leave time soon, which is 12 weeks. He talked to someone today that told him that he could use the vacation time he has accumulated, but would need over 300 more hours in order to get paid for the time that he is on leave. I know that there is a way for other employees to donate leave, not just the firemen, but all county employees, so I know things will work out one way or another. Anyway, I'd better get back to the room. Leigha and I are going to play 5 card draw tonight! Love, Mary
Tuesday, July 31, 2007 5:56 PM CDT
We are still waiting for Leigha's counts to come up. This will be our 9th night in the hospital. I guess it's good practice for when we will be in for 6 weeks or so! Leigha had to get her port reaccessed today and wasn't thrilled about that. She normally doesn't mind, but it was very sore from the frequent accessing and the failed attempts at the local ER. She is eating a little better, but has lost quite a bit of weight. She gets tired of me pushing food in her face, but I'm determined to get her fattened up a bit before transplant. Bryan and Ian seem to be surviving without us, but I miss my boys very much. I think today they were going to the skate park and Ian is supposedly getting quite good at the ramps and jumps. He assured me that he would wear his "brain bucket" and Bryan is supposed to send me some pix on my cell phone. Well, I am in the attrium and don't want to tie up the computer, but I'll try to update tomorrow. Today has been pretty uneventful, which I guess can be a good thing!!!
Monday, July 30, 2007 11:10 PM CDT
I don't know if anyone even checks this anymore. Since Leigha has a myspace she doesn't update, but since we will be going for transplant very soon, I thought it would be a good way to keep everyone informed. We are in Charleston at MUSC right now. Leigha was admitted last Monday and they almost put her in ICU. Her b/p was very low and pulse was rapid and thready. She fainted walking from the car. She was severely dehydrated and her counts were all critical. She was doing much better after fluids and blood and her nurses on 7-b truly took good care of her. Her blood cultures showed an infection, which is being treated with antibiotics. She feels and looks much better, but her counts are still very low. She has been getting blood and platelets, but her ANC has been 0 for 4 days. As soon as her counts recover, we will go to NC to Duke for her pre-transplant work up. They want us there next Monday if Leigha is able to travel. They are finding us an apartment and we will go outpatiet for 2 weeks and then be admitted into the bone marrow transplant unit for 5 days of radiation, 2 days of chemo, and one day of rest and then, the big day. I was very impressed with the facility and the drs. and staff at Duke and feel like we are doing the right thing by having her transplant there. Leigha will miss her drs. and nurses here, but I'm sure she will make new friends in NC. The nurses here tell us that they fight over who will have her as a patient. I don't know if it's b/c Leigha is so cool or she has fun stuff to do in her room. Ian let her borrow his Wi and she also has guitar hero from the atrium. It's not unusual for me to wake up in the middle of the night or should I say early morning and see Leigha "partying" with her nurses! I will try to update each day even if it is just a quick entry and please sign the guestbook. Also, we would like to thank our friends and community for all the support and prayers that we have recieved. I had better get back to the room. Leigha has beat me at connect 4, scrabble, chess, and paper mario, so I'm going to see how I fare at backgammon!!
Friday, May 4, 2007 7:00 PM CDT
As you can pretty much tell, I'm not very good at keeping up with this page, but I do get on myspace like, every single day, so I'll leave the address here in case you guys want to see how I'm doing!
http://www.myspace.com/leigha_c
Thnx!
Saturday, November 4, 2006 11:39 AM CST
Sunday, July 16, 2006 2:34 PM CDT
Hi everybody! You probably think I've vanished off the face of the earth, but, I'm just really lazy. I don't think I could possibly tell all that has happened in the course of about 3 months, but I did have fun!
I went to camp Happy days about a week ago, it was tons of fun just like last year. This year it was circus themed, they had real circus people teach circus stuff. I learned how to juggle scarves while I was there. I also did other non-circus stuff too, like tubing on Slingshot's boat; it was especially fun when I fell off.
They had a fear factor competition one night and the second thing you had to do was put worms and crickets all over your head for 2 minutes. I am reeaaallly scared of bugs and I thought it would be awful but it was pretty fun actually! The third thing you had to do was eat a cricket, but I didn't make it that far (my time wasn't good enough in the first event, but it really wasn't my fault) I actually wanted to eat a cricket though (I was feelin' kinda brave that night huh?) Well, when finally the competition was over, by the time we started back (it was in the middle of the woods) it was like 4 AM! I was sooo tired the next day because you have to get up at like 6:30. I got asked to the dance this year, on the way back from fear factor, by this boy; because he thought it was awesome how I put crickets on my head and didn't flip out. Well, I now know that boys think crickets on a girl's head is totally hot. (Go figure!)
We still have Flash's Couragous kidz get together next week to go to, and I can't wait! Camp was awesome, but it wasn't quite the same without Flash there.
Ummmm, lets see, what else can I say... Well.. My counts are good, anc is like 1000 something, So I'm happy about that. Right before camp, they were a little low, so I was worried I wouldn't be able to go, but I ended up being able to. But the first day there, I had a fever, so mom and dad had to come back alllll the way to charleston, come and get me and take me to MUSC. They did cultures to make sure my port wasn't infected (it wasn't) and I got to go back to camp in the morning.
Well, I'm starting to lose feeling in my hand, so I'd probably better stop typing now. I will really try to update before October, haha. Well, Thanks for still visiting even though I never update!
P.S. If you have time, sign my guestbook!
Tuesday, March 28, 2006 0:49 AM CST
I have been trying to get this old computer set up to put pictures on Leigha's photo page, but it's not meant to be. I hooked up the printer, but my computer didn't recognize it. I lost the installation disk, so I downloaded the driver from the Lexmark webpage. (a major accomplishment for me) I scanned a few photos to get the size right, and then I got a message that my scanner top was open. Long story short: we need to get a new printer/scanner. Maybe next week we can get one and finally share some new pictures with everyone.
We all had a great time at Ian's birthday party. He had a good turnout for his "carnival birthday party". You should have seen the backyard with all those kids running around! One boy got his foot hung up in the rope ladder of the inflatable slide and had to be cut down. The inflatable slide collapsed once. (separate incident) I made the mistake of making cotton candy before Bryan got the food done on the grill, so all the kids got a massive sugar rush, which added to all the chaos. It was great!!! Leigha had invited a few of her friends to hang out with, so it wouldn't just be her against the 3rd grade!
The only down-side of the evening was when the party was over, Ian told me that his throat hurt. He had a low grade fever and I felt bad that he had been around all those kids at the party. I took him to the doctor this morning and the strep test came back positive. Also, his tonsils and adnoids may need to come out. I'm glad we caught it so early and hope that even though there is still so much strep and flu going around, we can keep Leigha from picking up anything funky. When I picked up Ian's work from his teacher she told me that he had been selected Tiger of the Week!!
I take Leigha tomorrow for labs here in Conway. The steroids are really getting to her this time. She is having a very difficult time sleeping, as well as all the other negative steroid symptoms. She is also very sad that her good friend, Michelle, is moving and will be going to a different school. Leigha continues to do amazingly well with her piano and is doing her best to catch up with all the school work she missed.
The kids got a fish bowl for Christmas and I just got around to buying a fish today. He is a fighting fish that they named Willie. He seems to like his new home, it is much more spacious than his Walmart abode. We decided not to tell Bryan about the fish and see how long it takes him to notice it. So far, he hasn't!!!
I hope everyone has a good week and I'll try to get the pictures up. Keep in mind that it took me 3 months to buy my kids a promised $3 fish, so who knows when I will get the printer. Seriously, any suggestions on what type to get would be appreciated. I've bought three printers(cheap, moderate, and expensive) and they never last.
Take care, everybody!! Love, Mary
Wednesday, March 22, 2006 9:55 PM CST
Well, I have given Leigha a chance to update, but she has been very busy. She has missed so much school due to low counts, but started back last week. In addition to her 71/2 hour school day, she usually goes straight to Conway Elementary, where Mrs. Foxworth is doing her homebound instruction. On Thursdays we fit in a piano lesson.
Last week, my grandmother passed away. Bryan had to work, but the kids and I drove to Virginia for the funeral. My Dad and Barbara had the funeral in Kilmarnock. It was the first time all my family and I have been together in probably 10 years. It's a shame it had to be for a funeral, but it was nice to see them. I see Gary the most, and Larry usually when we go to Virginia, but Harry lives near Boston and we never get to see him. (Yes, Harry, Larry, Gary, and Mary!!!)
We also got to spend a week with Gary, Carolyn, Tina, and Kelly when we went on our cruise last month. It was a wonderful vacation. Leigha chose the Disney Cruise for her "wish" last year and we decided to go on another cruise this past February. We planned it for almost a year, but we were all too scared to get excited, because we knew that there were plenty of things that might prevent us from going. (low counts, virus, etc.) Well, we did get to go, and had so much fun. I will try to post new pictures soon since the ones in the guestbook are over a year old!! The weather wasn't the best, but it was still a fantastic vacation. The ship had golf, ice skating, in-line skating, and a huge rock climbing wall, just to mention a few things. The food was unbelievable. I will let Leigha go more in depth when she gets a chance to update.
I drove her to Charleston today for her check up and procedure. She only has procedure every 10 weeks now. She goes to sleep and they take out some spinal fluid to check and give her IV methotrexate and vincristine. Her counts were barely good enough to get the procedure. Her ANC has been kind of low for quite ahile now, so they are taking her off of the medicine that she takes to prevent pnuemonia. (First Septra, then inhalation pantamamine, then Septra again, and now off the Dapsone) She will get IV pantamamine next week. She also had elevated liver counts, so further testing was done to try to figure out if it's the 6-mp. We'll keep you posted.
Ian is looking forward to his birthday party Sunday. His actual b-day is Friday the 23rd, but he is celebrating on Sunday after churh. I can't beleive my baby is turnig 9!! He is playing baseball and seems to like it. You won't beleive how much he has changed when I finally post the pictures. Leigha told him that it is cool to have long hair, so he has grown his hair out. I haven't seen his face in months.
We will try to do better on the updates!! Please keep Sarah Otte in your prayers. She is a vey nice lady I met at the Light the Night walk two years ago and she is having a very difficult time getting a diagnosis for a long and trying medical condition. Also, please pray for all of the children who are battling cancer. God Bless!!
Love, Mary
Tuesday, January 24, 2006 2:52 PM CST
I am updating Leigha's journal since she has gotten a little behind on doing so. All in all, it has been a very good week. Leigha is back in school after missing more than a month due to low counts, hospital stays and feeling bad. She has looked and felt really good lately and we are very thankful. We were very lucky during the beginning of her treatment not to have a problem with low counts, infections, and hospital stays. Now that she is in maintenance, it is unusual to go through what she has (she had to get 7 units of blood since Thanksgiving)but Dr. Barredo said it is just bad luck and he didn't feel that it had anything to do with her leukemia, but she just picked up a few viruses and had trouble fighting them off. The last virus caused her temperature to go up to almost 105!!! I normally don't panic, but that was a little scary. Neither of my kids have ever had a fever that high.
We were very lucky to be home for Christmas. On Christmas Eve, we went to canlelight service at church and then the kids opened their traditional Christmas Eve present (pajamas) Then, we read The Night Before Christmas and they went to bed. Now, our other tradition is, whoever wakes up first, Leigha or Ian, will wake up the other and then they will both come in Bryan and my room and jump on the bed screaming, "It's Christmas, It's Christmas!!!" Then we go in the living room and open presents. Well, every year they get up earlier and earlier and this year it wasn't even 3:30!! We had planned on getting up early since Bryan was working his 24 hour shift on Christmas, but not that early!! We ate dinner with Bryan at the firestation later in the day and we celebrated Christmas with Na Na, Pa Pa, Grandpa Aaron, and Uncle Moo next day.
Leigha is doing very well with her piano lessons. I have been listening to her practice while I type this. I'd better get her started on her homework. She has so much regular work, plus what she missed when she was out of school. Anyway, we will do better on the updates. Even though Leigha doesn't update as much, she still checks her guestbook very often.
God Bless!!! Mary
Sunday, December 4, 2005 2:02 PM CST
Hi!!!!!!!!!!!! This update will be sort of short because I am in the hospital and the only computer is in the atrium which closes in 1 hour. This is the first time I have been allowed in the atrium and I want to have time to play. I was in the hospital for two nights last week and came home on Thanksgiving day. Yesterday I was in Conway ER and came by ambulance to MUSC. But at least I didn't have strangers transporting me, they were all my dad's home dogs from work. (Harv, Travis, Ethan, and one of the Skipper's who I can't tell apart.)
I'll close with some good news. I had a wonderful birthday and I had 6 friends come over for a sleepover. I had a lot of fun! I will keep you posted! BYE!!!
Wednesday, October 26, 2005 4:55 PM CDT
Hey!!! Once again Sorry for the delayed update! I guess you all are used to it by now though.
School is pretty much the same. Mr. Hendrick doesn't blow his whistle as much now... I guess he got out of breath. I got asked to join this Math program along with a few other kids. (It's for the top scores on PACT) But other than that it's pretty much no different.
Light the Night went really good. We had a good turnout and I had a lot of people walk on my team and/or donate money. Thanks to everyone who participated!!!! I walked the whole way and thought that it was shorter than last year. I wasn't really tired at all. I was talking the whole time and my mom asked me how I could talk like I did when I was walking that far and not pass out, and I told her that I would rather pass out than shut my mouth. She wasn't surprised.
For Halloween I am going to be a Vampire. (Just thought I'd post it because someone's bound to ask sooner or later)
I don't have to go to Charlston for 2 more weeks, so that is good. I was going every other week, so it's a nice change.
I guess that's all that is going on right now. I'll try to update soon! (You're probably tired of hearing this and it not happening, so I'll probably just stop saying it eventually)
Bye!!!!!!!!!!!!!!!!!! :)
Tuesday, September 13, 2005 3:31 PM CDT
Hello!!!! Sorry it has taken me SOOOOOOOOOOOOO long to update, but I have been really busy. I don't remember exactly how long ago you last heard what I was up to, but I don't think I told you about camp yet.
We did so much I can't remember half of it probably, but I know for sure that it was REALLY fun. I had really good counselors and everybody that was in my cabin was nice. Kaylee was in my cabin too. They had a lake with all kinds of fun stuff to do and every night was a party. The place where the parties were was decorated different every single night. They even had a prom night. You got to pick out a dress and keep it. They did make-up, hair, and nails too. You could sign up for tons of different actvities every day. I climbed a 55 foot tall rock wall (with some difficulty). I also went tubing lots of times and the first time I did it I was on the back of the tube where you fall off easier. I did fall off, but your supposed to fall off. If you do, you get a t-shirt. The guy who drives the boat's name is Slingshot, so it's no wonder about everybody in the camp had a t-shirt by the end of the week. I had a lot of fun that week.
(Two months later...) I get to go to school now every day even on Wednesdays. On the weeks that I get to go to Conway Hospital, mom just waits until I get out of school and then she takes me. It works surprisingly well too, because not many people are there that late. On the weeks that I have to go to Charleston, I get to at least go to school for a little while, and then at about 11:30, mom picks me up from school early and takes me to Charleston. Middle School is really fun! You get lockers and you get to talk in the hallways too. It's hard to get what you need from your locker, go to the bathroom, and get water in 5 minutes though. Pretty much all of my teachers are nice, and I'm in 2 classes with Maria, Science and Social Studies. My classes in order are Orchestra (I play the Violin), Math, Science, Lunch with the 7th grade, 7th grade French, 7th grade Language Arts, and Social Studies. Since my house is so close to the school now, I get to walk. Mom usually takes me there in the car or she walks with me, and then I walk home by myself. I'm deaf by the time I get home because my social Studies Teacher, Mr. Hendrick, keeps blowing a whistle as loud as he can becuase some of the class is talking. I don't think that's fair for the kids who aren't talking, but whatever.
I got a Gameboy DS a while back and a game called Nintendogs. It's SOO fun. DS's are really cool. You get to use a little pen to do all the playing. I'm really glad that I bought it.
Light the Night is coming up again in October, so If you would like to walk for my team or donate some money, go to light the night.com. I would really appreciate it!
Well, I've typed a lot, so I guess I'll get off now. I'll try and make an effort to update more, but I forget a lot!!! Bye for now!!!!!!!!!
Thursday, June 23, 2005 6:54 PM CDT
Hey everybody!!! Sorry it's taken me Soooooo long to update but I've just been having so much fun lately that I havn't had time to. Let's just say it's been a very eventful Summer!! I got a new bike about a month ago, and the first day I rode it I got both of my knees skinned, one pretty bad! Ian, Maria, and me have done the lemonade stand 1 or 2 more times since we opened up, but we all want to do it some more!
Maria came over the Friday before last and we had a REALLY good time. Saturday we went to the mall and saw the movie Madagascar, but we had about 30 minutes before the show started, so we went to the arcade and Maria and I did the Dance Machine. It was really fun! We did that a few times then went to the Theater part of the mall to see Madagascar. It was a Really funny movie!!!! I enjoyed it a lot! When Madagascar was over we went to the arcade again partly because the Dance Machine was so fun and partly because we didn't have time to trade our tickets in for prizes before the movie. The next day Maria came to church with us and afterwards we picked up Ian's friend Zachary and went to Ryan's. After we had eaten, we went to the arcade Again!!!! It was still just as fun though, because we got to play more games, and do the Dance Machine some more, and get even more prizes. Then we went to Family Kingdom for the rest of the day!!! We did pretty much every ride twice!!!! (Except for the ones that were too small for us.) Some of my favorites were the Swings, the bumper cars, the log flume, the Slingshot, the Pirate Ship, and the Swamp Fox. The Slingshot is is this ride that you sit in and it takes you up in the air so fast that your stomach does backflips. Then it stops at the very top, and when you least expect it it will shoot down and stop just before the bottom. It's really fun. The Swamp Fox is a roller Coaster that is really fast and sort of jerks you around. I like to sit in the very front car, because you go extra fast!!! The Pirate ship is this ride that I'm Really scared of, but I went on about 4 times with everybody else anyway because it was the only way I could get Maria to sit in the front car of the Swamp Fox with me!! I didn't just get on the Pirate Ship either. I got on the very end seat (with Mom and Maria of course!) where it is the very scariest because when it starts to rock back and forth really fast and high, the edge seats go the very highest!!!! There are other rides I liked, but there are too many to name! After that we took Zachary and Maria home, and went to bed after an exciting, and tiring weekend!!
Last Monday Maria came over again, and we played gameboy and the whole family rented the movie Hitch and we watched it. It was really good!!! The next day we chilled out until about 2:30 and then Mom took Ian, Maria and me to Collin's Park. While we were there Me and Maria saw a boy that was in our 5th grade class, Raymond. I could just as well call him Ian though, because he is the exact 11 year old version of Ian!!! He says the same stuff Ian says and gets along perfectly with him. In fact, the whole time we were at the park, Ian was playing with him. We played tag, swung on the swings, and did a lot more stuff. It was really hot though, so we went home after about an hour and a half and ate Peanut Butter and Jelly sandwiches. Then we went to The Freeze and got Ice Cream. We sat outside on the bench while we ate it, and after that we took Maria home because I had to go to Charelston the next day. My counts were 2000 by the way!
Camp is coming up really soon and I'm so excited! Mom has already packed both me and Ian's stuff for camp and we're all ready. She say we have to call her at least once and write to her everyday, because last year only Ian got to go because I was in the hospital and even then she almost went into withdrawel, so with both of us gone, I don't know what she'll do!! I'm really looking forward to camp though, because Ian told me everything they did last year and it sounded like SO much fun! I can't wait!
Since Kaylee and her family are in Hawaii, they said we could use their pool! We have gone twice so far, once when they were at their Grandma's wedding, and we also went today for about 2 hours after I went to piano lessons. I did pretty good at piano today and had SO much fun at the pool! I dived for dive sticks, jumped off the diving board, swam so much underwater in the 8-feet deep end that my ears started to hurt from all the pressure, raced Ian from one side of the pool to the other and a whole lot more!!!! Dad went with us last time, but not today, because he had to help set up the combat challenge for tomorrow. I did all kinds of stuff off the diving board, like cannonballs, a poorly attempted jackknife, jumps, and dives. I had so much fun both days I went to their pool!!!!
I have started to read the Harry Potter books again because the 6th book comes out in July, and I want to reread the old books so I'll remember better. I'm reading the 2nd one, The Chamber Of Secrets, right now, because I took the 1st one to school in third grade and it never came back. The teacher probably still has it! I can't wait until the 6th one comes out. The books keep getting longer and better everytime!!!
I did a lot more stuff since I last updated but I've typed SOOO much so that I'm going to sum up this journal entry. I'll try to update more frequently from now on, but if you don't here from me for a while, it means that I'm having a whole lot of fun!!
Bye!!!!!!
Tuesday, May 17, 2005 8:26 PM CDT
I have been busy with PACT tests all last week and this week, too. Today, after school Ian, Maria, and I sold lemonade. We did pretty good and gave Mom some of our profits so she can buy us some more supplies so we can sell again tomorrow. I have local labs tomorrow, but I won't have to miss school because we found out that they open at 7a.m., so I can get them done first thing and then go straight to school. My counts have been really high, but the doctor says it's because I have a sinus infection. I had to get xrays done in Charleston last week and I am taking antibiotics, clariton, flownase, and benadryl along with my chemo meds. I feel a lot better and I can breathe now which is definately a bonus!!! Another girl in our town got diagnosed with leukemia, just like me and Kaylee. Her name is Stephanie and she goes to Aynor Elementary School where Kaylee goes. Please pray that her treatment goes as good as mine has. Also, please pray for Cally who is not only having a hard time with her treatment, but her Dad just died. Please sign her guestbook if you get a chance. It is on the links of my homepage.
Saturday, April 23, 2005 4:27 PM CDT
Hey!!! I had a lot of fun yesterday. I got all A's except for one B in math, so I got the Merit Roll, but last 9 weeks I got the Honor Roll (All A's) so I got to go to this hour long dance they held in the gym for the Honor Roll people. It was SO fun. They had a DJ and really cool songs too. They had one last 9 weeks too, but I don't think I was going to school yet. I saw pictures of it on the School Tiger Time (the News) because during the dance they go around and take pictures and put them on the news. I made sure they took my picture at least a few times. By the time it was over, I was about to collapse because I had danced the whole hour. They were giving away water bottles too and I drank the whole bottle! Mom came with me and she said her heart was beating fast just watching us. After it was over we went back home to rest, and then at about 5:00 we went over to the Conway High School Track for the Relay for Life Walk. It was just Dad, Ian, and I though, because mom had to work. It was from 7:00 PM to 7:00 AM but we had to get ready so we came early. Kaylee and her family had their camper parked at the track, and dad cooked hamburgers and hotdogs for dinner. Kaylee and I got to wear purple shirts because we were cancer survivors, and the people who weren't wore white shirts. The first lap around the track was just supposed to be for survivors, but there were a lot more people with white shirts than there were purple. We did about 2 laps and then sold light up neckaces, different colored light up things that you put on your tongue, silver yo-yo's that were supposed to light up but only some did, and different colored bracelets that could open up and become pens. We sold it at a stand at first but we had better luck when we started to ask everybody that we passed as we walked around the track. Once or twice during the night it drizzled a little bit, but we didn't have to go inside. My legs started to feel kind of tired by 11:00, and by 11:30, I was quite sure they would fall off. The funny thing is, I didn't really walk around the track that much, I just walked back and forth trying to get people to buy the stuff that I was selling. At about midnight we went home and it took about 3 minutes for me to fall asleep, but I had to get up at about 2:00 in the morning to take my 6MP because I have to wait 2 hours after I eat and I ate late at night. I was so tired I slept until about 11:00 that morning. I had a very eventful day! Well, Kaylee is over (Ian is at Kamron's) so I'm going to get off of here. I will try to update soon!!! If you have time, try to sign my guestbook!!! See you later!!
Wednesday, April 13, 2005 4:37 PM CDT
I went for my appointment today. My counts were good and I get to go to school this week. Next week, I have my procedure and get Vincristine which I haven't had in a long time. I am not looking forward to that, because my hair has finally grown back and I don't want to lose it again. Mom said it shouldn't be so bad this time because I only get one treatment of it.
Ian and I got our packet from Camp Happy Days. I know it isn't until July, but I'm really excited. Last year I didn't get to go because I was in the hospital, but Ian told me about all the stuff he got to do. They have activities, swimming, rock climbing, and they even made snow for the kids to play in. Meredith said Kaylee and I could be bunk mates!
Well, we are getting ready to watch a Star Wars movie!!
Monday, March 28, 2005 5:00 PM CST
Hope everyone had a nice Easter. We didn't get to go to church because of all the flu going around. We did have a nice dinner and Jeff came over. Na Na didn't feel good,so Dad brought her a plate. Mom hid eggs for Ian and me and then we hid eggs for Mom and Dad. I went back to school today. When I got home I fell asleep and just now woke up. Well, time for homework.
Thursday, March 24, 2005 5:46 PM CST
I got to go to Ian's party. He had a lot of people at his skating party. We had pizza and pinata, too. My counts dropped some, but were still good enough to go. Mom says my body is fighting off the flu. I don't have any fever, just a little cough, but it's not in my chest. Tomorrow we are coloring eggs. Now Ian and I are going to play with all his new toys!!!
Monday, March 21, 2005 7:54 PM CST
Spring Break!! We aren't going anywhere for Easter, but it is nice to be home. We went to the zoo yesterday. Dad didn't get to go, because he was worked 48 hours at his new station. It was nice to be back at school, but I have got a lot of catching up to do. My counts have been over 2000 since my cruise. I get local labs on Wednesday and when I go to Charleston next Wednesday, they will see about raising my 6mp to a higher dose. (They had to lower it, because of my low counts last month) There is a lot of flu going around, and I have felt kind of tired and headachey today, and Mom packed a bag just in case, but she said we can't worry about what might happen and she has a good feeling I'm going to fight the flu off!! I hope so, because Ian's birthday party is this Thursday at the skating rink and I don't want to miss it. He has invited so many people and I even got to invite some of my friends. Happy Easter, Everybody!!!!
Wednesday, March 9, 2005 5:47 PM CST
Hey, Everybody!! Sorry if I have worried you. I have been so busy trying to catch up from all the school that I missed. I have had journals, writing prompts, reports, and much, much, more to catch up on. I had labs done today and if they come back good, I can go back to school tomorrow. I went out to see my horse, Patch yesterday. He has calmed down so much and he was really happy to see me. I have so much to tell, but not much time to write, so you'll have to stay tuned. I'll try to update tomorrow. Love, Leigha
Tuesday, February 22, 2005 6:33 PM CST
Sorry it has taken me so long to update. It has been very busy around here. First, let me tell you about my trip. We drove all night to Port Canavral, and the ship was even nicer than I imagined. I got to swim for the first time in a year! The ship had three pools and a water slide. We went to a show everynight onboard. There were Movie Theaters (One for the plays and one for the movies). The plays were awesome and the movies were cool. Some of the movies they played were still in the Movie Theaters back home. There was also an arcade. (The brochure said there were two arcades but we couldn't find the other one until the third night of our cruise when me dad and Ian were exploring. Turns out we couldn't play it though, one, because we had just spent all of our points at the other arcade, and two, because it was in the place where only teens are allowed. (They have all sorts of stuff for kids, teens and adults.) It wasn't a very good arcade anyway. The only cool thing was a dance machine, but that was about it. It took up most of the space too, because it was really small compared to the arcade we had just come from. We wouldn't have even been in the teen room, but the ship has 10 floors, and when we got into the elevator, we saw a mysterious 11 button, we tried pushing it, but nothing happened. Dad said it probably led to the captain's quarters and that you probably needed a key to use it. There are two stories on the deck! We were on 9 when we saw the 11 button, so we pushed 10 thinking it would just take us to the normal elevator lobby place it usually goes to, but instead, it took us to the Teen Room. Those elevators can be really weird sometimes. We snuck up a flight of stairs and quickly peeked into the Teen Room. It was about 1:00 AM, so there weren't many people up there, except for some kid playing video games, but that was about all. The ship also had a spa that smelled good, a gym that overlooked the Captains Quarters, a netted in area that was half basket ball court and half soccer court,(I can understand why it was netted in because it was on the top deck and it can get windy up there! I wonder how many balls they have lost??) Ping Pong and Shuffleboard, ( I wonder haw many balls they have lost there too??) and Three Gift Shops. (I only went to one and spent all my money in about 10 minutes.) I won $120.00 playing pirate bingo at the bingo parlor, I was on a Game Show, (Which we should have won, but the buzzer clearly was not working at all because we were almost always the first ones to buzz in, but usually she would call on someone else. I think she was just picking people at random.) We still got two coin thingees anyway. It was fun. Mom and me went to a pirates party and did the konga. We were at the perfect spot. It was on the top deck above the stage and we could see everything without being mauled by the crowd. Plus, all ther characters in the act were right beside us when they appeared. It was cool. I left out an important part. FOOD!!!! There was so much food and it was so GOOD!!!! We had the same servers each night and they pampered and spoiled us. We went to a different resteraunt each night. They were all different themes, but they had the same menu. The names of the restraunts were (in this order, Tritons, Animators Pallette, and Parrot Cay. I had sirloin steak every night. My hemaglobin went from 7 to 12!!! Each night our beds got turned down and the made towels into amimals and left chocolates on the animals like eyes and stuff. Once we got out a ways the ocean was crystal clear blue. On the second day, we arrived at Nassau, and everybody mobbed you for taxi rides, hair braiding, and horse carriage rides. Mom finally gave in, and we went on a horse carriage ride around town. It was really cool. The driver told us all about Nassau, and the horse had a little hat on. Then, we took a taxi to Atlantis, which is a huge hotel. We couldn't swim at the pool because it was way too cold and windy. But, we did get to go to their Aquarium. It was really cool. Way better than Ripley's Aquarium. The next day, we went to Castaway Cay, which is Disney's Private Island. I met Minnie Mouse and got her autograugh, and we rented a paddle bout and I paddeled a really long way out there till my legs were a little sore. Ian also buried his brand new light up camoflauge flip flops in the sand and we never got them back because the tram was about to leave and we didn't want to wait until the next one. BAck on the ship, Ian and I got to make flubber at the Oceaneers lab. I'm afraid Im going to lose all this so I'll type more on my next update and leave you wondering what happens in the next chapter of "Leigha's Great Adventures". MWAHAHAHAHAHAHHAHAHA!!!!!!!!!!!
Wednesday, February 16, 2005 8:35 PM CST
Hello, Everyone!! Leigha has not had a chance to update, and I know that some people are concerned and wondering if she was able to go on her cruise. We found out Wednesday that her counts were coming up, so we drove from Charleston to our house, picked up Dad and Ian and drove all night to Port Canaveral and boarded the ship Thursday morning. We had a wonderful time and just got home last night from Florida. Today we went to Charleston for labs and exam and had a good check-up. (Counts over 1000- Thank you, God!!) Leigha gets to have her 5th day of school tomorrow, but we are going to try sending her half days at first. I don't want to tell about the trip, because I know that Leigha will want to tell you all about it, but I will say that we had a wonderful time!!!! Thanks for signing the guestbook. Leigha will update tomorrow about the trip. Love, Mary
Monday, February 7, 2005 8:28 PM CST
Well, my labs at home Friday went up to 700 since I wasn't taking the 6MP. Today we just knew they would be nice and high, but they went back down to around 200. Kaylee was at clinic today and she gave me a really cool paint set where you paint 2 horses. She got it at her book fair. We started playing Adventure Park with Mom, Kaylee's Mom, and Michelle, the child life specialist, but then I got called back for my check-up and when I got done Kaylee had gone for hers. We did play long enough for me to find out that Mom's favorite superhero is Aqua Man. ???????? I was glad to get out of the playroom, because everybody was coughing and sneezing and Mom made me wear a mask the whole time. I think the sick kids should be the ones who have to wear a mask. Dr. Barredo saw me after Miss. Debbie and he said it was strange that my counts went up Friday and went down so fast again. He said thatit is probably the virus hanging on, but I have to go back Wednesday for labs and if they are over 500 I can go on my make-a-wish cruise and not to eat on Tuesday after midnight, because if my counts are low, I will have to get a bone marrow biopsy to make sure everything is ok. We were going to leave on Tuesday and spend the night in a hotel, but Dad said if my appointment goes good, we will leave and drive all night to get there on time!!!! Well, Mom is making me go to bed early even though I don't have school tomorrow. Goodnight!!
Tuesday, February 1, 2005 6:36 PM CST
I am so glad to be home after 6 days in the hospital. I had to get blood twice and my counts were not coming up until they stopped all my chemo meds. They were not going to let me come home until my counts were over 500, but since they went from 148 ANC to 328 in one day, they sent me home. BUT, my port had to stay accessed. My Mom has to flush and give my antibiotics and hep-locks. A nurse came by the house to make sure she was doing it right. If my counts go up Fri. the needle can come out. I go to clinic Monday if everything stays good and we are supposed to go on our trip, but I have to get permission on Monday. No school for awhile. Thank you everyone for signing my guestpage. Hospital was very boring at first, because I didn't have computer hook up in my room and I wasn't allowed in the playroom because I had fever. I felt too bad the first day to do anything anyway. Then Kaylee came and my fever went away and we had lots of fun. She left on Sunday, and it was just me and Mom after Dad took Ian back on Monday. Today I got to play Scene It in the atrium with a girl named Callie who also has ALL. Scene It was very fun.And when I got home, I had a big surprise. My grandparents from VA were at my house. We just ate dinner together. My Dad and Pop-Pop brought food from Applebee's to my house and we all ate together. They left already, because they wanted to get home before the roads got icey. It was nice to see them even for a little while. Since I couldn't kiss them goodbye because of my counts, I gave them each a Hershey kiss (they gave me the whole bag:-) and Grandma Barbara said she would save hers forever and Pop-Pop said he was going to eat his the first chance he got. When they left Mom was sad and it made me realize how much I missed my Dad for the 2 nights he couldn't be at the hospital. Well I am very tired and have to get up at midnight to make sure Mom flushes my port right!!!
Monday, January 31, 2005 10:13 AM CST
Again, I have limited computer time, so I will make this quick. Thank you everyone for signing Leigha's guestbook and sending her e-cards! Her cultures were negative, Thank God, but they have her on antibiotics until counts go up. ANC was 600 on Thurs. Fri-Sun ANC was 250 and they want to keep her until counts go up. Well, last night's labs were 148- not good! Dr. Barredo discontinued her 6 MP and told us he still thinks the low counts are a combo of virus and chemo. He doesn't think we need to do a bone marrow biopsy right now. He said that even if the counts are due to relapse ( I don't even want to think about that) that treatment/outcome would be the same if it was detected today or 2 wks. from now. We kind of get nervous when different drs. tell us different things. Yesterdays dr. told us she should probably get a biopsy if
counts didn't come up in a couple days or if they went down. Thursdays dr. didn't think she needed to be admitted at first and told me not to discontinue 6mp when I raised that question. Leigha's hemoglobin has dropped already, too and she needs another blood transfusion today. Please pray for Leigha to get better!!!! She is feeling better, we just need those counts to come up. And if it is meant to be I hope she doesn't miss her Make a Wish Disney cruise next week. Well, my time is up!!! Will keep everyone posted. Love, Mary
Saturday, January 29, 2005 9:26 AM CST
Hello, Leigha hasn't updated because she has been in the hospital. Her room doesn't have internet connection, so she has not been able to update. She called me from school on Thursday and told me she was tired and wanted to come home. After picking her up, I took her temperature and she had her first fever since May. I took her to the clinic in Charleston where they did labs and cultures. They started her on antibiotics, and admitted her. She had to have blood Thursday night, since her hemoglobin was down, but her fever is gone. They have kept her in the hospital to wait on the cultures and because her ANC is very low. At least Kaylee is here to keep her company. Kaylee is getting her last scheduled methotrexate drip. We will find out in a couple of hours if we will be staying awhile longer. Leigha will update ASAP!!! Love, Mary
Monday, January 24, 2005 6:34 PM CST
Thank you, Lt. Loeper for fixing our computer. I missed being able to check my web-site and e-mail. Sorry I haven't updated in so long. I have a lot of news, but not much time to tell about it, since it is a school night and I now go to school!! I started back on Wednesday. I love my teacher and get to sit right beside Maria. I went home early on Friday, because my jaw hurt from the steroids and lots of people were coughing at my table. I had clinic today and it wasn't too bad, except for when we got to Charleston and Mom told me to put my coat on I realized I only had my thin jacket. I left my coat at home and Mom had put it on the heater to warm up. We had to call and Justin checked it out for us. Mom said she would never live it down if our house that is owned by 2 firefighters burned down because she left a coat on the heater. I have been feeling pretty good. I have been craving chicken legs from KFC. Mom said I will be growing feathers soon.
I got my horse moved to Conway and go see him every day. He was so wild at first, but now, he comes right up to me and lets me pet him. Mr. Randy is training him for us and has really done good with him.
I will write more when I have more time and will put new pics soon. Oh, one more thing. I get interveiwed tomorrow for Reel Kids!!!
Saturday, January 15, 2005 3:02 PM CST
Leigha has not been able to update, because both computers are down. Hope to have them fixed soon. Things have been going pretty well here. She has a procedure and gets vincristine and steroids on Tuesday if her counts are high enough. She is hoping to return to school next week. That also depends on counts. She met her new teacher, Mrs. Matthews, and really likes her a lot. Maria is going to be in her class and she is very happy about that. We have just been hanging close to home lately, but Leigha and I did go for a nice long horseback ride on the beach. Thank you, Carrie!!! If anyone in the MB area wants to have a wonderful day riding horses on the beach call Sea Horse Beach Rides. It was awesome!!! Also, Kaylee came and spent the day with Leigha on Tues. They had fun. Leigha's grandmother got out of the hospital on Thursday evening. Please keep her in your prayers. Leigha will update ASAP. Thanks for signing her guestbook. I would write more but I am on the library computer and am running out of time. God Bless!!! Mary
Saturday, January 1, 2005 1:17 PM CST
Hi. horse horse horse horse horse horse horse horse horse horse horse horse horse horse horse horse horse horse horse. Well, I guess everyone knows whats on my mind. I went and visited him last week. He's really pretty. We are probably going to pick him up next week. My dad is working on a place to put him.
I had a wonderful Christmas. Christmas Eve, Mom cooked a huge dinner for everybody. Before that, my Grandparents came to our house and we opened the presents that they gave us and gave them theirs. After dinner we went to the 10:00 PM candlelight service. It was really cool. I had not been to church since last April. Mom got special permission form the doctor. When we got home it was very late. Ian and I left cookies and opened our traditional Christmas Eve Pajama present. Right before bed, my Uncle Butthead came by to give us a card but he had a fire to go to and had to leave quickly. We didn't go to bed till 1 AM. Next thing I know Ian woke me up like he always does on Christmas and we went into the living room. Once we had confirmed Santa had come, we woke mom and dad up the traditional way, by jumping on the bed and screaming at the top of our lungs, "IT'S CHRISTMAS!! IT'S CHRISTMAS!!!" They let us open Santa's presents, but since it was only 3:30 AM, they made us wait to open the rest after they took a little nap. We woke them back up at 9. It was the best Christmas. We all stayed in our PJ's all day long and played with toys and ate leftovers.
I had hoped to go back to school this Monday, but I am not going to be able to. We'll have to see what my counts are this Monday. Next Monday, I go to Charleston for check up and labs and the next week, I go to sleep and have my lumbar puncture and vincristine and steroids. I told Mom that she better stock up on food. I haven't been on steroids in a long time (last time they forgot), but I remember how hungry they make me. I even ate gross stuff like beef-a-roni.
Thank you everyone for making my Christmas so nice and all your prayers and for signing my guestbook.
Sunday, December 19, 2004 2:15 PM CST
Hi everybody! It's been a while since I updated but so much has happened. We decorated our tree a week or two ago. It looks really nice. Every year everybody in the family gets a Hallmark ornament and this year since I am taking piano lessons and I couldn't find a horse ornament, I got a Piano one that has Santa and some reindeer, and you can wind it up and Santa and one of the reindeer move like they are playing the piano and it plays the first Christmas song I learned to play. Its really nice.
The raffle was so cool. We got about 2,000 dollars from it. I was really excited because a lot of people said that they would give the horse to me if they won it, and almost all of the fire fighters put my name on the ticket. It took me at least a full minute to pull the name out because I kept swirling my hand in the bucket around and around.When I pulled the name out, It said Stanley Foster, and thats when mom started to freak out. She said it was someone at her work that she had sold it to, and he had said that if he won, he would give it to me. So.................. I NOW OWN A HORSE!!!!!!!!!!!!!!!!!!!!!!
He is a baby, only 5 and a half months old, and he is a paint horse,the kind that looks like paint is spilled all over it.I want to see him really bad, but we have to wait until Mr. Pope is there at the place that they are keeping him.
My Math MAP score was really good, a 236, 1 point higher than my Language score!!!! I thought I was going to do bad on it!!! My mom called the doctor to see about my school schedule and the doctor said that until I can go back regularly, I can have my home school lessons at school after school lets out. I really like that because everything that we might need is already there and sometimes I do stuff to help Mrs. Foxworth like clean the board off and stuff, and thats fun.
Well, my fingers are beginning to get sore from all of this typing. I'll update more later. Merry Christmas!!!
Wednesday, December 8, 2004 9:39 PM CST
I have been very busy!! Last Monday, I went to clinic. We left the house at the crack of dawn, so we could get done faster. I had my labs done (they were good) and I had my exam and breathing treatment (YUCK). It makes the most nasty horrible taste, I can't even decribe.
When we got back to Conway, we loaded up the car and started my Andy's Special Friends trip. Andy was a boy who had cancer and his family started Andy's Special Friends to send kids who are going through cancer treatments on a weekend trip to Myrtle Beach. Because of my parent's work schedule, he sent us Monday-Wednesday. First, we went to Dixie Stampede. I had never seen the Christmas show before and it was really good, but after the show was even better. I got to meet everybody in the show and ride on the horse drawn sleigh with Santa. They all signed a bible and a real cowgirl hat for me. I will post the pictures later.
Then we checked into our condo. Ian and I each had our own queen sized bed and our own bathroom. Mom and Dad had a huge room and bathroom and there was a kitchen and even a washer and dryer. We were right on the ocean.
The next day, we went to lunch at Hard Rock Cafe. Ian and
I got our picture taken on the motorcycle and the food was really good. We got to watch videos while we ate. After we ate we went back to the condo to change my pants because the tables were kind of shaky and I ended up wearing a Pepsi. After that, we went to Ripley's Aquarium. We stayed there for a long time. We saw the Titanic exhibit, did the power walk, where the sharks and fish and eels are swimming all around and over your head. We all got to pet stingrays and hold horseshoe crabs and watch a dive show.
Then we went to Benjamin's Calabash and ate dinner. They have every kind of food you can imagine. I mostly ate crab legs, though. We got to sit at a table right over the inlet.
Then we went to the condo and changed into our Andy's Special Friends shirts, and went to Alabama Theatre. The Christmas Show was great. Me and Ian got to go on stage and after, I got to have my picture taken with some of the cast. I was so tired when we left. We went back to the condo and spent one more night. The next day, we ate breakfast and came home. I was tired for two days after that.
On Friday, I went to the County Line Arena, for my live nativity. It was SO beautiful. There were live animals and music and good food. I got to see Sterling and Jessie Carr that I haven't seen since I took dance last year. I can't describe how nice the nativity was. Becky's sister sang, too. Saturday night, my mom had to work, but me and Dad and Ian went. Dad brought barrels and wood and Mr. Pope had heaters, so it was a lot warmer. I wrapped up in a blanket Mom sent, and enjoyed the nativity. Saturday night they even had gospel singers. If anybody reads this that was a part of the nativity, I just want the say: THANK YOU THANK YOU THANK YOU!!!!
More good news, we put up our tree and and even put lights outside this year. I wasn't sure we would be able to have a live tree, because I can't have live plants around me. Mom asked the np and she said we could get a live tree. It is the best one we have ever had!!!! Mom also asked if I could go to church on Christmas Eve if I wear a mask and she said yes to that, too. I was so worried I would miss candlelight service.
I also went to school yesterday and today (not during school hours, but after) and I took my MAP test. I was worried I would do bad since I have missed so much school, but I got a 235 and a 246 and I take the math test on Friday after school.
Well, I'm getting very tired. I'll write more later and post pics tomorrow.
Sunday, November 28, 2004 11:43 AM CST
I hope everybody had a happy Thanksgiving. I sure did. My mom cooked so much food, and we ate kind of early and my grandparents came and Jeff, who is kind of like a family member but not. That nite we built a fire and me ian mom and dad watched movies. We also got a phone call that my make a wish has been accepted. WE ARE GOING ON A DISNEY CRUISE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
On tuesday before Thanksgiving, there was a knock at the door, and when mom answered it all that was there was a big Patrick balloon. we later found out that some of my friends (Katherine, Mrs. Clark, Makela Rae, Allie and Sara Ellen) were hiding in the bushes. They brought a surprise belated birthday party to my house. They thought of every thing too. They had decorations, Spongebob plates, napkins and party favors. Cake and ice cream, and lots of presents. the best part was seeing my friends.
Yesterday, we went to the happy days Christmas party. It was so much fun. We ate food and played lots of games. I got to meet people that I have only emailed. There were presents for all the kids that came. I got a bath set and Ian got a Jeff Corwin doll that can strech. If you dont know he's the annoying crocodile hunter guy. Mom strongly dislikes him. Everytime she hears the word "Croiky"(I cant spell it because we are forbidden to watch that show)she screams really loud. She screamed bloody murder when she saw what he got. Ian said COOL!!!! and started to chase her around the room with it. Mom squawked like a bird over and over again. Speaking of which, I actually got mom to come up and do the chicken dance with me, which was hard because she was tired from people wrapping her up as a Christmas tree and wrapping presents with our hands tied together. Those were other games we played. There was even a dj at the party. and a dancing Grinch with one grinchy green hand and one human hand. There was also a Shrek, though he looked like baby Shrek becase he had beady eyes. Later some robot came in but we could not identify who he was supposed to be. We had SO much fun.
This past week, I got a box in the mail with 101 cell phones for my fund raiser. It was SO heavy. It was from my cousins in maryland. Thanks Jenny, Dickie and everybody.
The live nativity will be held at the County Line Arena at Seven to Eight thirty this Friday and Saturday. Anybody who would like to buy tickets for the paint horse let me know, I have A LOT!!!! And if anybody is wondering what they would do with a paint horse if they win, it would make an absolutly wonderful Christmas gift for a certain 11 year old girl....
Wednesday, November 17, 2004 10:13 PM CST
I have been pretty busy this week. This past Friday, I went to visit the Breakfast Flakes in the studio. I was actually on the radio with them for almost 2 hours. They are so nice. It was very fun, but kind of sad, because it was Mark and Ron's last day. Korby is staying, so at least I am happy about that. They gave me lots of cds and some t-shirts and we got to eat cake together. The cake was chocolate and very heavy. It probably weighed 13 lbs and was pretty except it had a weird bulge on the side and I kept thinking that something was going to pop out of it everytime it twitched. Also, the guy who brought it to them had a daughter who swiped her finger around one side of it. I watched them cut it and I noticed that they were cutting away from the bulge and the finger swipe. Finally, in an act of tremendous bravery, Mark, armed only with a notebook and a fork, started to poke at the bulge. It burst and covered us with weird green ooze. Just kidding about that part. Everything else is true.
I went to Wild West today to spend the rest of my b-day money. I got a black and white stuffed horse that reminds me of Trinity. (My dog that I had to put outside when I got sick) I also got a real rope like they use in rodeos. I played rodeo a lot today. Ian was the cow. I lassoed him and hog tied him and drug him through the house and threw him into the closet and gagged him with a sock. I had a quiet day, except for the occasional cry for help coming from the closet in Ians room...
The people at Wild West heard me on the radio last week. They are having a Live Nativity for me at County Line Arena. It is going to have people acting out the nativity scene and even real animals. Mary is going to ride a real donkey and there will be sheep too. Local churches are going to feed everyone who comes and there is no charge, unless people want to make a donation. They will also be selling tickets to give away a baby paint horse. They are selling those tickets right now at Wild West. I will draw the winning ticket on Dec. 15th at Wild West in Conway. I can't wait to go to the live nativity. It will be at County Line Arena on Dec. 3rd and 4th from 7 until 8:30. I want to thank Mrs. Pope and everyone who is helping out.
If you get a chance, sign my friend Kaylee's guestbook. She is linked at the bottom of this page. She is in the hospital for a couple days and that is NO FUN. People don't know how much we like getting messages in our guestbook, especially when we are stuck at home or in the hospital.
If you want to buy a raffle ticket for the baby paint horse, I have some or you can go to Wild West in Conway. Their phone number is 843-347-WEST.
Monday, November 8, 2004 10:36 PM CST
Well, Let's see. I just typed the longest journal ever and lost it while I was trying to enter it to my page, so forgive me if my writing isn't perfect. Today I was supposed to have labs only. I am one of the few people who would rather have their port accessed than "the dreaded fingerstick" . They won't access my port for just labs b/c of risk of infection. In Georgetown, Mom pulled over to put the numbing cream on my finger and she told me I should ask my nurse if she would stick the side of my finger, not the middle, b/c the middle is the tender part. Then, Mom got me a biscuit from Bojangles which I have been craving, but for some reason, as soon as I smelled it, I felt sick and couldn't eat it. A good thing did happen. The Breakfast Flakes played the "What the Heck is it " game and the ? was "what is full of hot air?" I actually got through and said my brother, Ian. I didn't win the prize, but I got the glory of saying it! Mark and Korby asked me when I was coming to visit them at the station and Mom said probably this week. When I got the clinic, Michelle brought the box of "thingies" which is what I call the coping toys. I don't actually look at them or play with them, but it's a tradition that Michelle brings them in when I get my blood drawn. The side of the finger thing did not hurt quite as much as usual so that's how we are going to do it from now on. Dr. Lou did my exam and then I went to the playroom to do my craft. Then Dr. Barredo came in and said it was 2 for 1 day and he was going to examine me, too. What that actually means is that the first Dr. found something that is wrong with me, and she wanted Dr. Barredo to look at it. My neck was swollen, and he wanted me to do a thyroid test. Guess what that meant??? They needed to access my port which meant that the finger stick was for nothing. I'll get my results back tomorrow. I also had to get that yucky breathing treatment done upstairs on the fifth floor. I can still taste that nasty medicine. We didn't go see horses, b/c Mom ate McDonald's and she normally doesn't eat hamburgers. She said her body was rejecting it. What that means is she had a horrible stomach ache and we had to hurry and pick up Ian from Fisher's house and go home. I had a huge writing prompt to come home to for homework. But I do have some good news. My anc is high enough to go see the Incredibles during the week when the movie theater isn't real busy. I know I am not using proper paragraphs, but I am so tired and I'm still mad about losing my other journal. I hope my teacher doesn't read this one, b/c I'm not even going to proofread it. Coming up:1. Maybe I will get the go to Virgina for Thanksgiving. 2. Andy's Special Friends is sending my whole family on a trip 3. a girl named Nicole is doing a school project on leukemia and she interviewed Mom and is using me in her project and collecting cell phones for me. Also, Please keep praying for Chelsea's family and also my cousin Jenny who Mom just told me is having an appointment about a car accident she had a long time ago, and all my caringbridge friends who I am going to link if I can figure out how to do it. Anybody, how do you sign the guestbook and put your name as a link? or put your friend's name and have it go to their site???/ And how do you put songs on your website. Thank you. Good night.
Monday, November 1, 2004 9:06 PM CST
Hi, Everybody. I am going to ask you a favor. I appreciate everyone saying prayers for me and I can feel them working. I want to ask that you pray for Chelsea Altman's family. Chelsea has gone to Heaven and even though that is a wonderful place, I know her Mom and Dad and sister will miss her a whole lot. Her website is linked at the bottom of this page.
I also have a new caringbridge friend. Her name is Sierra and I want to ask that you keep her in your prayers too. That she gets to come home from the hospital. She had to spend Halloween in the hospital. Her caringbridge site is mn/missysierra, so check out her site and sign her guestbook if you get a chance.
I started a new chemo today called divided dose methotrexate. I have to take it every 6 hours and I can't eat an hour before or after. I also have to take extra 6-mp, and I can't eat 2 hours before or 1 hour after that. And I can't take the 2 together. That doesn't leave a lot of time to eat!!!
I go to Charleston again tomorrow to check my methotrexate levels. My blood levels were good today thanks to everybodys prayers!!!
Then Wednesday is : MY BIRTHDAY!! I'm having a family party and maybe next month I can have my slumber party. Mom said Maria can come to my family party along with Mom and Dad, and Ian and Justin and Jeff.
I start piano lessons on Thursday. I got to go see the horses today on the way home but just to look, not to ride.
I found out that our leukemia walk has raised 47,000 and they only expected 21,000.
Please sign my guestbook if you have a chance.
Thursday, October 28, 2004 6:32 PM CDT
Hey everybody, I havn't updated in a while because I've been playing the game I won off ebay (Paper Mario) nonstop since two days ago. Well, ok, I did have to take bathroom breaks and go to bed, but I wouldn't if I didn't have to. Before the two days I did'nt update because I was WAITING for the game!!
I had to go to the Conway Hospital for a fingerprick (OWWWW) and my mom said the doctor called her and said my counts were almost as good as a normal person's!!!! My best friend Maria came to my house and spent the weekend last week and she's spending the night tomorrow too!!
My birthday is 5 days away!! We are going to have a home party on my real birthday and my family will go to that one. I also hope to have a slumber party pretty soon after my birthday. We have to move around counts and school and it's hard to find a day that works.
I'll TRY to update soon. Gotta go!
Thursday, October 21, 2004 10:43 PM CDT
Hello, First I would like to thank everyone for coming to walk on my team at Light the Night. I wish I could have spent more time with everybody, but there was so much going on. I am scared to start naming people because I might forget to name someone and I appreciate everybody being there. I had a huge team and we raised a lot of money for leukemia cure. Thanks to everyone who made a donation. I will post how much we earned later when I have a total. I even had some celebrities on my team. The Breakfast Flakes (my favorite radio people) came and walked on my team, too. My legs are so sore and my feet feel like they are going to fall off.
I get labs done in Conway on Tuesday, so I don't have to go back to Charleston for 2 weeks. I start some kind of new chemo at home called divided dose.
I was going to have a slumber party on Nov. 1st for my b-day if my counts were still up. I'm glad I didn't send out invitations, because I have to go to clinic on the 1st and 2nd. Those would have been perfect days for my party because school was out. Not that that effects me, but my friends go to school.
I am going to start taking piano lessons next week. I have always wanted to play piano. At least it won't matter to the piano if my counts are up or down.
I still don't know what I am going to be for Halloween. Any ideas? Also I am still collecting cell phones. If you have any old ones let me know.
Please sign my guestbook. I asked mom if everybody was getting tired of my website and she said maybe if I updated, people would sign more. I really like hearing from everybody, so please sign. Also, if you go to my friends site, you can sign theirs,too.
HOW NOW BROWN COW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Tuesday, October 12, 2004 9:53 PM CDT
Hey Everybody!! Leigha here reporting from the hospital. I am getting my last scheduled methotraxate. They have changed my doses for my at-home chemos, so my counts will hopefully stay up. I am almost to Maintenance-Thank you God!!!
My hospital room is huge. Mom and I have had a pretty good time at the attrium. We have watched lots of movies, and read a lot,too. I even made something for Ian! My room is so cool, it's back behind two doors and you can't hear any doctors or buzzers or kids crying. It almost doesn't feel like I'm in the hospital.
My Light the Night walk is SO CLOSE. PLEASE let me know if you can walk or send a donation. It is not too late, almost too late, but not quite. I sent some e-mails out to some of you and I'll tell you again. My personal goal was to raise $1000 and I have raised almost $700. (Not bad for a girl who isn't allowed out of the house or hospital!)
Thanks for all the cell phones everybody!!!
Well Roseanne is on, I'll write more later. Remember:LIGHT THE NIGHT LIGHT THE NIGHT LIGHT THE NIGHT
Friday, October 8, 2004 4:55 PM CDT
I went to clinic Wednesday but did not get my last methotrexate drip. For some reason my counts are too low again. The doctor did a bone marrrow biopsy to make sure i'm still in remision. I am but it was scary waiting for the results. The doctor took me off all my chemo meds at home too. We're going to try again on Monday. I get my first breathing treatment on Monday. On the bright side I can eat after 10:00 since I don't have to take my 6MP. On the bad side, I can't ride horses, go see Shark tale, or be around people.
Light the night is right around the corner, but it's not too late to sign up to walk on my team or make a contribution. Thanks to everyone who has signed up or donated money. (Arica, Beth, Lisa, Karen, Tanya, Cory, Station 23 volunteers, Rescue 2, Cindy, Jeannie, Ms. Rosy, Amanda, Megan, and Christ the Servant Lutheran Church Youth Group.)
I'm still doing my cell phone fund, let me know if you have an old cell phone you have to give me.
Michaela, let me know if you make anymore soccer goals.
One more question. I'm deciding what I should be for Halloween. If you have any suggestions please tell me.
We're going to go eat and carve some pumpkins!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Wednesday, September 29, 2004 3:11 PM CDT
My counts are up. The doctors changed some of my medicines. I don't take Septra anymore. I'm going to get some kind of breathing treatment at the clinic instead. Next Wednesday is my last scheduled hospital stay for methotrexate. Yipeeeee!!!!
It is nice that my counts are up. I have been stuck in the house. I still can't be around sick people or really crowded places, but we are planning to go to see Ladder 49 when it comes out on Friday. Ian has gotten to go to 3 movies that I couldn't go to because of my counts, so I'm excited about going to the movie. Mom said we might even sneak in a horse riding lesson, but I won't be able to groom.
I am still trying to get people to walk on my team for Light the Night. If you can walk PLEASE e-mail me or call me. If you can't walk, but want to make a contribution, you can make it out to the Leukemia and Lympoma Society and mail it to me. I will turn it in at the walk.
A lot of people are asking about how the cell phone fund works. You can go online and look at Cellphone Fund. How it works is: You mail me your old cell phones and in December Mrs. Sharon Carr who is organizing this for me and Kaylee will mail them all at once to the fund. The company uses the cell phones to make new phones. They take the old ones apart and use the parts to make new ones. They directly mail me a check for the phones. (This fundraiser is for me. It doesn't have anything to do with the Light the Night walk) Thank you everybody who has mailed me phones.
Today a reporter came by my house and interviewed me for a newspaper article. It was about the WIRE ladies at Horry Electric giving me the laptop and blanket and horsies and other stuff.
I also got chosen at my school to be the REEL kid and I will be on t.v. for that. I will let everybody know when.
I got to go play in my backyard for the first time since I got sick. Mom had to put the dogs up, but I still got to see them. I hadn't seen my little Trinity since she went blind. She went blind right after I got sick.
I'm working on some really neat pictures to put on my site, so be watching for them.
Monday, September 20, 2004 6:49 PM CDT
First of all I want to tell everybody how much fun I had at the rodeo. I saw barrel racing, bull riding and calf roping. Becky made shirts for us and me and Ian rode the ponies. There was a calf scramble where you try to get the ribbon off the cow's tail. I asked mom if I could do it and before she could say no, I was over the fence!
The light the night walk is October 21. If you can walk on my team please let me know. Also if you can't walk and want to make a contribution, they are tax deductable and can be made out to the leukemia and lymphoma society. Get in touch with me and I'll tell you where to send it.
Also remember any old cell phones you may have don't throw them away because I can use them for my cell phone fund.
Well we are getting ready to watch Home on the Range and have a snack. Speaking of food, my mother is so desperate for me to eat that before she went grocery shopping, she offered to get kid cuisene and lunchables. I asked her "Who are you and what have you done with my mother?"
Please continue to pray for Charlie Stephenson. Also for Chelsea Altman and her family, she is a girl my age struggling with cancer.
Thank you "Mrs. Anonymous" for you know what. Also thanks Beth and Arica for helping me with Light the night.
Don't forget to check out my friend Kaylee's website.
Love,
leigha
Friday, September 17, 2004 9:50 PM CDT
well I got some good news and some bad news. My methotrexate levels are too high to leave the hospital. We were going to leave tonight because dad has to work tomorrow, but now he has to call in because he has to keep Ian. The good news is: today was pretty fun considering I was in the hospital. Mom and I went outside and read books then we went to the gift shop and bought a stuffed horsie and candy. THen we went to the atrium and played monopoly on the computer and Road rage. ( I'm practicing to take my rightful place as champ.) Then mom and I looked at all the disney resorts on the computer, all exept one because the hospital computers net nanny said it was "inapropriate." Now I ask you? What can be inapropriate about a disney resort? I almost wet myself when mom suggested some of her theories... ( ask her about it later) Lets see, Happy days sent us steak, cheesecake and chocolate cake. Flash came to see me. Everyone please pray for her husband Charlie, who is going away to New England for nine weeks for cancer treatments. Also I have a really cool nurse tonight. She smacked me on the way down the hall and you should have seen me trying to chase her down the hall while dragging my IV pole. Keyword "drag" because none of the wheels roll on it. Anybody who wants to walk on my team for the light the night walk, (October 21,) please let me know. It's a really good cause and will be a lot of fun. Thank you Beth Mevissen and Arica Oliver for all that you are doing. Please everybody say an extra prayer that I will be able to go to the rodeo tomorrow. Please sign my guest book when you look at my site. I love getting new messages!
P.S. Hey nana, if your not sitting on it, maybe the cats hid your camera book in the litter box!:)
Thursday, September 16, 2004 12:18 AM CDT
Hi, everybody. I am in the hospital right now getting my methotrexate. I'm glad my counts came up. I just found out that I have a fever, but it's probably because of the ear infection that I have. I hope I am out of the hospital in time for the rodeo Saturday. I have been looking forward to going for weeks now. I am on the Starbright computer right now because the internet doesn't work on my laptop while I'm at the hospital. I found out that the atrium rents out gameboy games which is pretty cool. Thank you everybody for checking out my webpage. Please keep leaving messages. I love to hear from everybody.
Monday, September 13, 2004 7:09 PM CDT
I am on my laptop right now. I just got internet today. I got on it as soon as I got home but then a few minutes later I had to do my home school. My counts went up a little and hopefully I will be able to be admitted this Wednesday. this is my second to last hospital visit, then I'll be in maintenance! In January I get to go to school, and I might take horse riding lessons when my counts are up! Thanx for all of your emails that you have been sending me. Gotta go!
Wednesday, September 8, 2004 3:09 PM CDT
I am at clinic. I'm not going to the hospital this week. They had to postpone my chemo until my counts go up. Hopefully next week. On the bright side: Mom said she might go to Wild West and get me the Seabiscuit horse. I already have Hildago.
Wednesday, September 1, 2004 12:47 AM CDT
Hey I'm at clinic updating now, but I am about to go home. It's about to storm here, It seems like it always rains when we are driving home.On the way to and from Charleston, we see a lot of horses. I can't wait for when I can ride regularly, but my counts are low right now. Yesterday I met my fith grade teacher for the first time. She is so nice. I have a lot of homework; three days worth! I will have my laptop hopefully sometime this week. Then I can update everyday! Thanx for your emails. Bye
Monday, August 30, 2004 7:53 PM CDT
My horse riding lesson rained out, but I got to groom the horse. Her name was Little Annie. The horse riding teacher's name is Shannon. She is so nice. Since it rained that day, I went the next day. It was only my second time on a horse ever and I was catching on fast. I remembered most of the things I had learned the day before and I can get on the saddle without help. We went out to the pen and Shannon put the longe line on Little Annie. I walked arond the pen. WE went both ways. Then she took the line off and I did it all by myself. After that, I learned how to jog. It was bumpy, but fun! I also went across the bridge and the poles. It was really fun and I hope my doctor will let me start lessons before January. I don't think I can wait that long! Oh, And I'm going to my first rodeo! YEEHAW
Friday, August 27, 2004 1:29 PM CDT
I am at the fire station updating this but next week I hope to have my laptop. I am so exited! Today I take my first horse back riding lesson. Mirs. Sharron Carr arranged it for me. I just went to Wild West and got a riding helmet and shirt. Becky helped me and she was so nice!! More later, Leigha
Tuesday, August 24, 2004 7:29 PM CDT
Leigha hasn't been able to update her journal, because her counts have been down, but her grandmother has been printing out her guestbook entries for her. She has really enjoyed all her messages!! She hopes to update at the clinic tomorrow. Thank you all for visiting!!! Mary (Leigha's Mom:)
Saturday, August 21, 2004 9:20 AM CDT
As soon as the doctor looks at me, I will be able to get out of the hospital. If I don't get to update for a while, it's because I don't have a computer at home and my counts will be down so I can't go out in public. Hopefully I'll get a laptop pretty soon. This stay hasn't been so bad because of the computer. Last night Ian yanked out his front tooth and bloodied up the whole hospital room. It looked like the set of a horror movie! He'll do anything for attention and a few bucks I guess. Please leave me some messages because I'll be stuck at home with nothing to do.
Friday, August 20, 2004 9:49 AM CDT
Yesterday night Flash from Happy Days sent me pizza so I did'nt have to eat the yucky hospital food. I made dad eat the meatloaf. Weirdly enough he liked it. I was on the computer all night until I fell asleep clutching the mouse. I slept soundly until Mom woke me up for my medicine. Then I screamed at her in my sleep like I usually do. Sometimes I'm so tired I miss my mouth and end up with it in my ear. Ian is in the atrium so I get a well deserved break. Thank you for all my e mails. I hope to go home late tonight or tommoow. It depends on my levels.
Thursday, August 19, 2004 3:45 PM CDT
I am in the hospital getting my 24 hour methotrexate drip. The child life specialist, Erin got the Starbright computers up and running so I just established my website. I hope to get lots of e mails from all of you.
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