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Sunday, February 15, 2009 10:28 PM CST
Hi all! Just a quick update to let you know the happenings around here and ask for a prayer request. We have been staying busy with all the kids activities and just enjoying the fact that Billy is still at home. He is still eligible to be called until June, but so far so good.
Noah has just finished his second season of basketball. He did very well this year, in fact his team (a great group of boys that were mostly all on the team last year) finished in a tie for second place. Noah was high-scorer in many of the games. Last year, we won only one game, so it was exciting to see the boys improve so much. Alli is still preparing for dance competition and will have her first one of the year next weekend. Leah is reading like crazy and still enjoys Kids' Day Out. We're getting ready for soccer season for her and baseball for Noah.
The last couple of weeks have been kinda rough around here. The kids and I all had type A flu (despite having gotten flu shots) and it was very miserable. The kids were out of school for about a week and we were all feeling so bad. Noah had a fever of 106.9 which was terribly scary. Immediately following the flu, we are all on antibiotics for ear infections, sinus infections, etc. I am hoping that this week will be a turn around.
"Flu-week" was also a real pain because it ruined some plans we had that weren't necessarily easy to arrange. We were scheduled to go to Alvin for the weekend for a visit with my family and for Leah's doctor appointments -- an eye exam and an oncology appt (more on this one later). Massive coordination effort to get several doctor appts. on the the same day, get Billy the day off from work, etc. The oncologist actually opened up his schedule on a day he doesn't see patients, to help us out. Well, since we were sick as could be, we definitely had no business being in the cancer center. We have rescheduled for this week, again coordinating and again the doctor seeing us on a "non-clinic" day, but this time I'll travel alone with just Leah, so the kids don't miss any more school. So here's the "arrrggg!!" part. . .
We've discovered a lump in Leah's right chest area. . . it's a very "specific" lump -- about an inch in length, very cylindrical -- almost like a little bead or tube. . . and feels much too "perfect" to be scar tissue or a tumor. Coincidentally, this lump is right where her port-a-cath was. . . You guessed it -- we're now thinking (as does her pediatrician by the way) that they may have left part of the port in there! Crazy, right? Oh. my. goodness. What an exciting life we lead. . .
I don't know what will happen if it is indeed a piece of the portacath. She had the port removed when she was about 18 months old (Jan 2005). She is now 5 and 1/2 which means she's had it there for over four years and I hate to just go after it when it's not really causing problems. The pediatrician has said that even though it isn't causing trouble, it is potential and they may want to remove it. So, at this point we wait to see what they say. Of course, we never do x-rays (because of her genetic predisposition to more cancer the doctors advise against it), so why would anyone have ever seen it? Even when she had pnuemonia, her pedi just gave her medication to treat it -- our x-ray philosophy is no x-ray unless it will change the course of treatment and is absolutely necessary. If it's only used for confirmation and the treatment will be the same regardless, no use in exposing her to the xray. However, I am guessing there will be some sort of diagnostic imaging done to figure out what it is and then we'll go from there. One would think if you're removing a portacath, that you double-check somehow to make sure it's all gone, right? Crazy. Then again, maybe we're wrong; I hope to feel very foolish and be just that, but it sure feels suspicious, and the pedi agrees with our theory. Of course, the day that the port was removed, we had pulled off another massive coordination effort in the OR -- on that day she had an EUA, a mold for prosthesis done, the portacath removed, and her ears pierced -- several doctors taking turns all in one surgery. . . so who knows. . . maybe they got distracted?
I'll keep you posted on what we learn. Please pray for things to go smoothly. Leah HATES the eye drops that are involved with the exam. They, like so many medical things, are scary for her (and they sting). And of course, pray for whatever the lump is, to be easily dealt with.
On a more positive note, we are finally going to move ahead and apply for her Make-a-Wish which is an exciting and fun thought. We are also hoping to return to Camp Sunshine this year and are happy about the possibility that Billy will join us, since we thought that wouldn't happen. As soon as I return from the doctor appointments I'll start working on that . . . the airfare is astronomical, about $2500, so I will begin the process of finding a good price and finding help with that. Camp is so wonderful and we look forward to it all year. It's an awesome opportunity, for one week a year, we are able to have such fun with some great families who have shared our experiences, and for that one week a year, Leah really is just like everybody else. She loves her friends that are "just like her" with their special eyes.
As always, I hope this finds you well. I'll update after the Houston trip (we see the doctors on Wednesday) and maybe add some new photos then too. :)
Thanks again for caring enough to read.
Tuesday, January 20, 2009 12:43 AM CST
Happy, happy (not-so) New Year! Since I never got to the Christmas cards this year, I'll say first off that we are grateful for all our friends who check in with us on a regular basis and we wish you a very happy and healthy 2009!
We had a fun December with Noah turning 8 and celebrating with a TEN-boy sleepover at our house. It was lots of fun but likely won't be repeated anytime soon! :) We were joined by my parents on Christmas and Santa was extremely good to us this year. Then the kids and I spent New Year's in Alvin, as Billy had to work anyhow. The highlight of the holidays was when we finally got the call that Leah's biopsy was normal and all results were good. We are so thankful. I am very sorry that I am just now reporting it. We were getting ready for Billy's deployment, and well, we have really just been focusing on spending time together and accomplishing all the things that needed be done before he left. So, thank you for your prayers, she is doing great and we are relieved. She'll have her next checkup in a few weeks, the first week of February. I've attached a couple of slideshows with photos of December happenings and a fun time we had climbing Enchanted Rock. Also, I've added the link and password to Noah's new 8-year-old photos. They turned out pretty cute -- it was really bright outside that day and he's a little too squinty in most, but there a couple really good ones.
Well, as I mentioned, many things have been ignored while we focused on Billy and his impending departure. I have over 100 emails built up in my inbox, and all sorts of stacks of papers to be dealt with, but someday I'll get to it. Here's the latest on Billy and his deployment to Iraq. The original plan was that he would leave on Monday the 19th from San Antonio airport. Then, last Thursday, we got a call that the departure flight had been moved to today, Tuesday the 20th at 8:00. There becomes a point, when the time for leaving gets close, that it just gets really hard emotionally. . . knowing how tough it's going to be and waiting on it. It is sort of like the thought "let's just get on with it so we can be sad a few days, get over it and start the clock so he can get back." So that's definitely where we were last Friday afternoon, just as I was leaving to get the kids from school, when the phone rang. It was someone from the readiness office on base calling to say that Billy's deployment had been cancelled. WHAT?!!? Say again? What do you MEAN cancelled?
Here's the story as I know it, along with the good and bad points. . . Apparently, it works like this. There were, at this time, two nursing spots to be filled for the O.R. at the hospital in Balad. Billy was one, "X" was the other. For whatever reason, some power that be decided that "x" should be cancelled. (Word has it that things are very slow over there and that they really don't need as many staff as before). HOWever, "x" had already left, is over there and it's now easier to cancel Billy since he was not yet on the plane. I'm very sorry to "x" and family, but hopeful for us! So, as of TODAY, he is not leaving. This is news that would thrill us if we weren't concerned that this status can change just as quickly as it came to us. Here's the good and bad. Billy is not leaving today -- GOOD. Billy might not have to leave at all -- very GOOD. Obviously, if he stays, he'll get to be here for some important family events like Noah's First Communion, which is great. And the not-so-good. . . we are essentially now in limbo. Bascially, until June, he's fair game. Which means we can't really plan on anything before January 2010, because if he gets sent as late as June, he'll be gone until then. He could have to leave with only a couple days notice at any time. He could have to go to Iraq or Afghanistan (I really don't want that), or somewhere else. He is supposed to be the officer in charge of the infectious control of the entire hospital in Iraq and someone might realize it and decide they need him there so they don't have to do it. If someone there or elsewhere has a family emergency, etc. he could be sent to take their place. He is already scheduled to go to Alabama for an important training for 5 weeks in September/October, and if they deploy him later, it could cause him to miss that. Also a later deployment would mean no time together over the summer when we'd hoped for at least one month, or it could mean that he misses Leah's first day of school. We've also already spent over $100 to ship his things to Iraq. It's hard to know whether to be excited or not (well, we're excited he's here now, but you know what I mean). I pray, and please feel free to join me, that we fly under the radar until his band (his window of time to be sent) is up and he stays here. If the powers that be have a spot that needs to be filled wherever (word is that Bagram -- the base in Afghanistan -- is getting busier and busier just as Iraq is slowing down) and they see that they have a guy ready to go, they may just throw him into that spot. The not knowing is hard, and hard to explain to the kids, but hopefully, we avoid deployment entirely. Time will tell. Our prayer is that if he's going to have to go, that it be sooner than later, Iraq over Afghanistan, but of course, not at all is preferable. :)
So that's the latest. The kids are doing great. Noah is wrapping up a very successful basketball season and looking forward to baseball and golf. He got braces to bring his two front teeth together and is happy about that. Leah is signed up and ready for soccer, and Alli's dance competition season begins next month. We're busy but blessed. We love to hear from you whenever time allows. We always read the guestbook and even though I sometimes take a while to respond, I always check the email.
Take care and blessings to you all.
Make a Smilebox slideshow 
Make a Smilebox slideshow
Thursday, December 18, 2008 4:45 PM CST
Okay, no updates for months and months, then two in two days! So far I'm keeping up much better! :) If you didn't yet read the novel I wrote yesterday, it gives the comprehensive update, so look for it in the journal history. . . but I felt like I really had to share how today's appointment went.
We were very nervous about how Leah would handle it and asked prayers from friends literally all over the world. I have to say, I truly felt that prayer support this morning. Shortly after Leah woke up I started talking to her about the appointment. We feel like it is best to be very honest with her about medical things because then she knows she will be able to trust that we will do so. We are honest as we can be, avoiding all words that would trigger instant panic, like "shot." With all the medical things she's had and will continue to have, it's better that way. Otherwise, during something very routine, she'll be on the lookout, wondering if she's going to be tricked, which just creates more fear. So, she knew we were going to the doctor today, but shortly after she woke up I told her that the doctor was going to need to scratch a little spot on her back to check and make sure it wasn't something that would make her very sick. She instantly starting crying and pleading that she didn't want to do that. We talked about how it wasn't fair and we wish we didn't have to do all the yucky things, but that because of her cancer, we just have to sometimes. We talked about which parts were scary and what to expect. She was still crying and scared, and wanted to know what the tool was called that the doctor would use, and so on. Then, we said a little prayer together that Jesus would help her to not feel so scared. The morning went on and as we got ready, she'd say she didn't want to go and I'd tell her I understood and was sorry. We got to the doctor's appointment (Daddy too -- we purposely waited till he could be with us) and the nurse put the emla cream on her back. So far, so good. For those of you not familiar, emla is a numbing cream we call "magic cream" and it is truly magical and helps so much! You have to wait 30 minutes for it to be effective. Our dermatologist is a precious and sweet lady who is very caring. We decided to wait 40 minutes, just to be sure. So, while we had 30-40 minutes to kill, we decided to get the heck outta there rather than sit and dwell on what was to come. We took Leah to Starbucks got her a vanilla creme with peppermint and whip cream (her favorite), and then we sat in the car and listened to music (country, what else for Leah?) and played around until our time was up. When it was time to go in, we praticed laying still on the table (we'd done this once at home too), and then the doctor came in. She was very good about talking to Leah and answering her questions, showing her the tool she was going to use (okay, we showed her a harmless-looking tool, but who's counting?) and then she asked her to get on the table. Leah calmly did, and then she looked at me and said, "I don't want to do it, I'm scared." She does not like to lay on a doctor's table, I think because it feels like she is vulnerable and has little control, so we compromised and rather than lay completely down with her head on the pillow, she laid her head in my hands about 6" above the table. . . and then, she lay perfectly still and scared but calm (no crying!) while the doctor took the sample. This procedure included several numbing shots (which the magic cream disguised!) and then a "punch" using a tool that cuts straight down about a quarter inch or so into the skin. She has about a 4mm circular spot on her back that will take a couple of weeks to heal. (We will also get results from the biopsy in 1-2 weeks, which we believe will be good.) I can't tell you how much all the prayers and sweet messages meant to me today. We are so proud of how well Leah did . . . the difference in today's appointment was far from the norm, a milestone, and such a relief! I know many of you played a part in that. Thank you. We are blessed to know so many caring people who would take the time to think of us today.
Now, I am off to prepare for class Christmas parties and a 10-boy birthday sleepover tomorrow! Happy Birthday to my 8-year-old Noah! (tomorrow)
Make a Smilebox slideshow 
Make a Smilebox slideshow
Thursday, December 18, 2008 4:45 PM CST
Okay, no updates for months and months, then two in two days! So far I'm keeping up much better! :) If you didn't yet read the novel I wrote yesterday, it gives the comprehensive update, so look for it in the journal history. . . but I felt like I really had to share how today's appointment went.
We were very nervous about how Leah would handle it and asked prayers from friends literally all over the world. I have to say, I truly felt that prayer support this morning. Shortly after Leah woke up I started talking to her about the appointment. We feel like it is best to be very honest with her about medical things because then she knows she will be able to trust that we will do so. We are honest as we can be, avoiding all words that would trigger instant panic, like "shot." With all the medical things she's had and will continue to have, it's better that way. Otherwise, during something very routine, she'll be on the lookout, wondering if she's going to be tricked, which just creates more fear. So, she knew we were going to the doctor today, but shortly after she woke up I told her that the doctor was going to need to scratch a little spot on her back to check and make sure it wasn't something that would make her very sick. She instantly starting crying and pleading that she didn't want to do that. We talked about how it wasn't fair and we wish we didn't have to do all the yucky things, but that because of her cancer, we just have to sometimes. We talked about which parts were scary and what to expect. She was still crying and scared, and wanted to know what the tool was called that the doctor would use, and so on. Then, we said a little prayer together that Jesus would help her to not feel so scared. The morning went on and as we got ready, she'd say she didn't want to go and I'd tell her I understood and was sorry. We got to the doctor's appointment (Daddy too -- we purposely waited till he could be with us) and the nurse put the emla cream on her back. So far, so good. For those of you not familiar, emla is a numbing cream we call "magic cream" and it is truly magical and helps so much! You have to wait 30 minutes for it to be effective. Our dermatologist is a precious and sweet lady who is very caring. We decided to wait 40 minutes, just to be sure. So, while we had 30-40 minutes to kill, we decided to get the heck outta there rather than sit and dwell on what was to come. We took Leah to Starbucks got her a vanilla creme with peppermint and whip cream (her favorite), and then we sat in the car and listened to music (country, what else for Leah?) and played around until our time was up. When it was time to go in, we praticed laying still on the table (we'd done this once at home too), and then the doctor came in. She was very good about talking to Leah and answering her questions, showing her the tool she was going to use (okay, we showed her a harmless-looking tool, but who's counting?) and then she asked her to get on the table. Leah calmly did, and then she looked at me and said, "I don't want to do it, I'm scared." She does not like to lay on a doctor's table, I think because it feels like she is vulnerable and has little control, so we compromised and rather than lay completely down with her head on the pillow, she laid her head in my hands about 6" above the table. . . and then, she lay perfectly still and mostly calm (no crying!) while the doctor took the sample. This procedure included several numbing shots (which the magic cream disguised!) and then a "punch" using a tool that cuts straight down about a quarter inch or so into the skin. She has about a 4mm circular spot on her back that will take a couple of weeks to heal. (We will also get results from the biopsy in 1-2 weeks, which we believe will be good.) I can't tell you how much all the prayers and sweet messages meant to me today. We are so proud of how well Leah did . . . the difference today's appointment was far from the norm, a milestone, and such a relief! I know many of you played a part in that. Thank you. We are blessed to know so many caring people who would take the time to think of us today.
Now, I am off to prepare for class Christmas parties and a 10-boy birthday sleepover tomorrow! Happy Birthday to my 8-year-old Noah! (tomorrow)Make a Smilebox slideshow Make a Smilebox slideshow
Wednesday, December 17, 2008 9:25 PM CST
And now for a long, and long overdue update. . . (if you don't have time to read it all, skip to the ***PRAYER REQUESTS at the bottom please!)
Wow! This year is flying by! I can’t believe how busy and quick this school year has been. I have intended to update for weeks, no, months now, but for one reason or the other have just transferred it to the next “to-do” list instead of getting it done. Today is the day! Be advised, this one will be L-O-N-G, long.
I don't know what exactly the term is for how busy we've been. . . I think maybe it's "blessed." Blessed to have so many opportunities, and blessed to be able to take advantage of them. I guess I'll start where I left off. . . when I intended to update at the end of August (argg, I can't believe it's been that long.)
We celebrated both girls' birthdays in August. Leah turned 5 and Alli turned 9. We spent time at the beach house (always fun) and had a great time with all the cousins and even Papa at the waterslides! We went crabbing and caught several, which was exciting! We also had a birthday dinner with the Van Beverens in San Antonio at the Rainforest Cafe.
As summer came to an end, we caught a Missions baseball game and spent an afternoon at the huge pool and waterslides at Ft. Sam (where we had the whole pool to ourselves for quite some time!). The kids started school and are thrilled to have wonderful teachers this year. Alli is in 3rd grade and Noah is in 2nd. Leah started "Kid's Day Out" at Prince of Peace Catholic church. It is fabulous and I am continually bummed out that I didn't know about it sooner -- they are so caring and she loves it -- I just can't help thinking "she could've been coming here the last 2 years!" She goes on Tuesdays and Thursdays and like I said, she loves it! Until November, her class had 8 kids. . . 7 boys and her. Now, another little girl has joined the class which Leah thinks is great.
September brought us lots of excitement. We had a whole house full of people for a while due to Hurricane Ike. At one point, we had 6 adults, and 7 kids aged 9 and under! It was a little bit like a zoo. Fortunately, damage to my family's homes was minimal, and by some miracle the beloved beach house survived. Damaged, but survived. Most of Crystal Beach was devastated. . . over 60 percent of the homes are simply GONE, many more damaged heavily. Hopefully, after the new year, repairs will begin and we'll be ready to go to the beach again by summer. Water and electricity are starting to be restored and though it will be many years to get back to normal for Bolivar as a community, we can't wait to return. Also in September the kids started up on their various sports. Alli tried her hand at CYO volleyball and LOVED it. She gained skill through the season and while she is not the "star" player she'd like to be just yet, she can't wait to play again next year. Noah played fall baseball and his team finished 2nd in the league. He hit 4 homeruns in his last 3 games and did really well all season. Leah chose to play soccer and had a blast! We joined a YMCA team coached by some friends from church. She can't wait to play again in the Spring. It took some serious logistics at times to get all 3 where they needed to be, but everyone was able to "do their thing." Oh, and the girls continue to dance as well. . . Alli takes 4 classes a week and is again competing in clogging, and Leah takes once a week. So, yeah. . . busy.
In October, Alli got her braces off. It was a big day and she looks beautiful! When the rest of her teeth fall out/come in, I am sure we'll go down that road again, but for now, we have moved them around to make room for the others, and they look beautiful. Halloween was great fun. We went to a party at a friends' house and of course, did some ever-popular trick-or-treating. Leah was a belly dancer, Noah a SWAT team guy, and Alli was Cleopatra.
All 3 kids were on the cover of the November issue of "Space City Parent" magazine. That was neat! It is a Houston-based magazine aimed at, you guessed it, parents. Our photographer usually supplies the cover photos and they were chosen for that issue…very cool. We also enjoyed the Air Show here in November and spent Thanksgiving in Alvin with family.
That brings me to December! whew! (she catches her breath) Friday is Noah's 8th birthday and he is having a sleepover with 10 friends. Yes, you understood correctly. . . 11 little boys will take over my house. . . and on the night that they have gotten all sugared up at a Christmas party at school, no less! We will stay here for Christmas and my parents will be coming here too. We'll have Christmas dinner with both sides of the family, which will be nice.
Now for the individual updates and ***PRAYER REQUESTS. . .
I've covered a bit of this already.
Alli is doing well in third grade and continues to make us proud in every way. She enjoyed volleyball and is now concentrating on dance, preparing for competition season. She is considering taking a break from dance next year to allow for more participation in other sports. She is currently taking an hour each of tap, ballet, jazz, and clogging. She has figured out "the secret" about Santa Claus. . . let me tell you what it is. . . it's that all those Santas in the malls, etc. are not the REAL one. So, if she tells you she knows. . . THAT is what she knows. :)
Noah is in 2nd grade, and is becoming quite the athlete. He did very well in fall baseball and is currently playing CYO basketball. His team is 2 and 1 and he has scored points in all 3 games. In fact, he has scored at least 1/3 of the points for his team in each game. He is already registered for Spring baseball and I imagine he'll probably do track as well. Noah has a history of sinus issues and had a catscan done a couple of months ago. His sinuses are not formed correctly which is the culprit of his continual congestion, etc. He will be having surgery the day after Christmas to try to alleviate things. The doctor will go orthoscopically through his nose to make the openings in his sinuses a little larger and hopefully help them to drain properly. ***Please PRAY that this procedure goes well and remedies things. We've been told that compared to the tonsillectomy, it should be a "piece of cake."
Leah is loving Kid's Day Out. She still loves her short sassy hair and has even gone a little shorter than the original cut. It's stacked in the back and has lots of bounce. It suits her very well. She is reading anything and everything! Leah LOVES country music. It's a bit abnormal actually. Where other kids will watch cartoons, etc. Leah will watch CMT all day! She knows the title and artist of a song within the first few seconds of a video or the first notes of a song. It's crazy! She often asks me to move the GPS cord in the car because she "can't SEE the radio!" (It tells title and artist). I asked her the other day to name the country singers/bands she knew. . . within minutes she named over 55! Seriously, It's hilarious! Old stuff, new stuff, obscure stuff, she knows it all. She still loves Taylor Swift and will die when she realizes that we don't have tickets to her rodeo show here. I didn't realize that tickets were going on sale till it was too late to get anything not in the scary steep section at the very tip top. :( She thought soccer was loads of fun and hopes to play again in the spring. She had to sit out the last couple of games due to a cold which made her asthma a little uncontrollable. The pulmonologist basically told us that she better be a couch potato if we didn't want to end up in the hospital. She is much better now though. She'll have her eyes checked again in February. The spot on her back that we've been watching is going to be biopsied tomorrow. The doctor is no longer comfortable, with the risks she carries, just watching it. I am not overly concerned that it will be something "bad," but more so about how she will deal with the procedure. It will be done in office and is a relatively simple thing. . . but she gets so very terrified at all medical things. It is painful to watch that fear consume her and not be able to "rescue her" from the medical things that she must endure. Even the simple things are scary because of all her history and her mistrust of the unknown. So ***please PRAY for her tomorrow. Pray that she is comfortable and has minimal fear, and of course, that the spot is nothing to worry about. Leah, Alli and I were all diagnosed with strep throat today too, so that doesn't really help with overall state of mind/being. The doctors have both said it's okay to go ahead though, so we will.
We will, in part, because we are trying to "get it all done," -- that enormous "it" that encompasses more than what is likely possible before Billy leaves for the desert. Yep, for those who haven't heard, he is heading back to Iraq in mid-January. And, for those who are wondering, it has been 15 months since he returned last time. He will be gone for six months this time which means he should return in late July or early August. I personally am hoping for him to be here by Leah's birthday August 5th. His time does not begin until his boots are on the ground in Balad, so that travel time on both ends always adds a few weeks. ***Please PRAY for his safety while he's deployed. Please pray for us as a family while we are separated. We are very close and it is incredibly hard to be apart for so long. Please pray that the kids handle things well. Please pray that I handle things well. We hope that since school is in session, that will help keep us occupied, make for a normal routine, give mom a little break, etc. The older kids go to a school that is largely military kids, so they have peers that share this experience, and counselors that are sensitive to the situation and even meet with kids of deployed parents in small groups to address any issues they may have. We're thinking this deployment will be much harder on Leah than last. She is quite a daddy's girl and seems concerned about his being gone. Billy will miss her preschool graduation, Noah's 1st communion, Camp Sunshine, and lots of other important family days, but we're thankful that he will be back in time to spend a little bit of our summer vacation with us, and for her first day of kindergarten. Now, if I can just figure out how I am going to get them to all their activities. . .
So, I don't even know if this will all fit on the webpage. . . but I guess I am about to find out. I don't think I'll ever wait this long to update again! Here are some slideshows and Please check the links below for current photos and information too! Merry Christmas to each of you, and blessings and health in 2009!Make a Smilebox slideshow Make a Smilebox slideshow
Wednesday, August 27, 2008 3:43 PM CDT
Real quick before we head out the door to the kids' religion class. . .
All went well at Leah's appointment today and the doctor said the spot looks like some kind of mole (it had a name I don't remember). She said that she is comfortable just watching it and she'll check it again in 3 months. The marching band can be quiet again! :) Thanks for your prayers!
Tuesday, August 26, 2008 10:19 PM CDT
Hi all! I hope to update with all the latest news, start of school report and photos this week, but wanted to post just a quick message to ask for a little prayer. . .
When I took Leah for her well-check a week ago, I asked the doctor about a spot on her back that seems like a little bruise, but has been there quite a while. . . and doesn't seem to be going away. She said it is definitely not a bruise, and it needs to be checked at the dermatologist. Tomorrow we'll be going to do that. Please pray that it's something simple. It probably is, but with Leah's genetics, there's always that fear. . . a friend who is a mom of a child (actually 2) with Rb describes it as a marching band that goes through her head all night, before a check-up. :) I'll update and let you know what the doctor says. Thanks!
Also, the girls' birthday photo shoots we did 2 weeks ago are now online. They are also at the link below (the one where our family pics are), but will be listed as "Van Beveren girls" and you'll need the password Is3937 to view them. They turned out really pretty which always makes it hard for me to choose!
Make a Smilebox slideshow
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Make a Smilebox slideshow
Sunday, August 3, 2008 9:01 PM CDT
Hello there. Thanks for checking in. Here's our latest happenings. . .
Big change you might've noticed from the photo above. . . Leah got her hair cut -- almost 11 inches! She donated the hair to Locks of Love and was so proud of herself! It was really cute. . . she got lots of attention in the salon with everyone telling her how nice she was and ooohing and aaahing over how cute her new "do" was. She was so happy. She spent the first few days looking extra-long in the mirror and telling everyone that she got her hair cut short and that she "shared her hair." The evening of the haircut, we were on our way back to San Antonio from Alvin and had stopped at a restaurant to eat. She came up to me where I sat at the table and whispered to me, "Mama. . . I love my hair!" We're proud of her too!
It's hard to believe that she'll be 5 years old on Tuesday! Some parts of those 5 years seemed like decades, but overall, it's hard to believe 5 years have passed already! She has really grown this past year, shedding that "baby" look, thinning out and growing taller. The hair cut makes her look older too! We're not sure we're ready for that! :) She's very excited over the approaching birthday. . .
We spent a week at my parents' beach house in early July and had a blast! Beach every morning and evening and water slides every afternoon. . . fun, fun, fun. The kids are so lightweight that with Billy's longboard (9'4") they can easily ride the smallest waves. They had a great time learning to surf. Noah became the master of the skim board and Alli had her first encounter with jellyfish (which she thought was seaweed, so she kicked it around a bit before the pain began!)We built sandcastles, cruised around in the golfcart, and collected 100's (literally) of hermit crabs. It was a very fun week. We went to the waterslides every afternoon (one day we went to two different ones!). One of the places has 2 curving slides built into the hill. It's the one we preferred. . . they don't really give a rip about what you do, so we had lots of fun races and tried to out-do each other with our kamikaze moves! Leah particularly loved the slides.
After we got back, Leah began swim lessons again and she is doing so well. She is finally starting to really swim on her own. After months of her telling the swim teacher "I'm gonna DrOwN!" every time she was supposed to come off the side of the pool, she is now swimming to us sometimes without warning! I have gone from trying to convince her she won't drown, to telling her she can't just take off without telling someone. . . now I'M telling HER, "you're gonna DrOwN!" :)
Noah enjoyed a week of baseball camp at UTSA with some buddies from his little league team. He is currently trying to decide whether he'll play Fall baseball, soccer, or flag football. . . ahhhh, decisions, decisions.
Last week we took a day to go downtown and do some of the tourist attractions we never take advantage of. . . we went to the Alamo (brief visit, favorite part according to Leah = the snowcone), the riverwalk including dinner and the boat ride, and the mirror maze. We really had a good time. The mirror maze is just that. A series of mirrors and pathways, but you can't really distinguish which is which. We did it about 20 times, and still couldn't find our way through without several detours. We had fun trying to "set a new record" or team up to see who could get out first, etc. It was fun! It's a great place for hide and seek because even though you see each other, finding the real person versus the mirror image is tricky!
This past weekend my sister and her crew came for the weekend. We had a great time Friday night when our families met up with a friend (& family) for dinner. On Saturday we saw The Backyardigans Live show which, though not as good as the Dora or Diego shows, the kids enjoyed. (Okay, now everyone who doesn't have a kid younger than 10 is saying what the heck is she talking about?!) Anyhow 2.5 days with 7 children in the house and the oldest is 8 (almost 9) makes for some tired parents! Though they're all exhausted, everyone had lots of fun.
This week we'll celebrate Leah's birthday once with family (at Chuck E Cheese) and again with her little friends from dance (at McDonalds), plus we're going to take in one last Missions game for this season, and possibly make a trip to Fiesta, Texas to use the kids' free tickets they earned at school before they expire. We've got one last trip to the beach planned, we're waiting to hear if when/if we'll get to play baseball with Craig at the Biggio Baseball party, and then I suppose we'll call it a summer. Alli will turn 9 (holy cow!) on the 24th and the next day it's back to school.
Hope you are having a fun-filled summer too!
You can view our new family photos at the link below. I've got some new photos . . . And I'm going to try something new. . . I hope it works! Click below. . .Make a Smilebox slideshow
>Make a Smilebox slideshow
Thursday, July 3, 2008 2:20 PM CDT
Part 1 of 3:
It’s been forever since I updated and that can only mean two things. . . .(1) everything is going well, and (2) we are keeping busy! I may not have updated in a very long time, but here is a very long update to make up for it! Maybe if you read it over the course of a few days, it’ll feel like I am doing a better job of updating regularly!
Here’s the latest happenings in our little world. . .
Relay for Life was good. Leah walked the survivor’s lap and was the youngest survivor there. We stayed for a while, but did not do the overnight. I don’t think we’re quite ready for that yet. We’d like to have a team in the future and do the full relay, but it’s hard because our family and friends are scattered around, so for now, we just participate at a limited level. Thanks again to those who contributed to the ACS in Leah’s honor. We hope maybe to relay with one of Leah’s Rb survivor friends and her family next year. We think that’d be lots of fun.
Alli made her First Communion in May. We were joined by her grandparents, godparents (who happen to be her aunt and uncle) and their children, along with a great aunt and uncle. It was very nice and she looked beautiful. Our house was certainly busy for a couple of days with 7 children (aged 8 and under), and 6 adults! We were glad to have them here.
The kids finished out their school year on June 4th. Where did this one go? It really did go quickly. Noah will begin 2nd grade and Alli 3rd grade in August. Noah’s permanent teeth were trying to make a showing without the benefit of first losing his baby teeth, so with the help of the dentist, he lost FOUR top teeth a few days before school ended. He looks so cute with his toothless grin. We have been to the orthodontist and for now, we are watching and waiting. He’s definitely going to need some help making room for those bigger teeth, just like Alli. They expanded her braces to go to the back teeth in June. She still has brackets on the front 4 upper and lower and now they’ve put them on on the back 2 molars upper and lower, so her braces go all the way around. We are trying to make room for the teeth that are supposed to fit in the empty spaces (where the others were removed last summer), which is going to be a trick!
We made a quick trip to Houston on June 5th for Leah’s MRI of the brain and orbits and for her visit to the oncologist. I am happy to say that we got a clean bill of health and Leah did pretty well with the anxiety prior to getting the I.V., which is never fun.
On June 14th, we left for Camp Sunshine in Casco, Maine. There is a wonderful but long story about how it worked out that we got to Camp Sunshine this year (airfare was almost $3000) and I will spare you the most of, but I must mention that the Tropical Smoothie Café in Austin was gracious enough to sponsor our airfare. The Tropical Smoothie company has chosen Camp Sunshine as their charity of the year this year and have/will be doing fund raisers throughout the year to help send families like us to camp. If you’ve got one near you, please support them, and if you are in the Austin area, definitely go there, have a smoothie, and make sure to tell them we sent you! I am pretty sure there is some sort of story/photos of Leah at that location. (Click on journal history to continue. . .)
Thursday, July 3, 2008 2:18 PM CDT
Part 2 of 3:
Our flight plan this year was much like last, we flew Jet Blue out of Austin to JFK in New York and then on to Portland, Maine which is just under an hour from camp. We were supposed to arrive in Portland at midnight (cheaper flight) and spend the night (or what was left of it) in a hotel until camp picked us up in the morning. HoWeVeR. . . when we got to JFK it was beginning to rain. That turned into full-out thunder storms and the airport was shut down, delaying all flights. The next thing I knew, our flight was cancelled! NO hotel help, since it was due to weather. We did find a hotel with a room (you can imagine they were quickly booking up because of the situation), figured out the air train system and got to the place where the hotel shuttle would pick us up. Then, we spent a night in Queens in a room with 4 of us in a king size bed, Alli in a roll-away, with NO luggage! The next morning we got up early (easy to get ready since we only had the clothes on our backs) and took a shuttle back to the airport. The rides to and from the airport were straight out of the movies! Crazy driving and lots of honking – at one point Noah was in my lap as we went around a curve because the grown lady next to him couldn’t hold herself up against the centrifugal force and she was in HIS lap! It was pretty funny. So we had a little New York adventure on the way!
Many of you will remember that the kids and I went to Camp Sunshine last year, and we were thrilled to be returning and bringing Billy with us this year! Camp Sunshine is a camp for children with life threatening illnesses and their families, and it is such a fabulous, magical place. It is very hard to describe in words. The week we go is dedicated to children who have retinoblastoma. Because Rb is pretty rare, even at our own hospital we don’t really get the opportunity to talk to/meet others who have been through our experience. At camp, everybody has! The kids have a blast, doing all kinds of fun things (arts/crafts, game room, outdoor games, mini-golf, playground, lake activities – canoe, kayak, paddleboat, indoor swimming pool, and more!) with a MILLION volunteers who give them a TON of individual attention, Leah gets to be “just like everybody else” (because the majority of the Rb kids there also have at least one prosthetic eye), there are fun and games, and group sharing for the parents, and it’s just wonderful. It’s a week away from the “real world” and just having fun and relaxing together. The camp is free for families, funded solely by dontations. If you’re a charitable giver, this one is DEFINITELY worth adding to your list. The kids all 3 participated in the talent show. Leah sang a Taylor Swift song “Teardrops on My Guitar,” Alli danced, and Noah shot an apple off of Billy’s head with his nerf gun! We even let the girls have a sleep-over with 2 of their friends in our cabin on the last night. At the end of the week, there is a “wishboat” ceremony, where the children launch the boats they’ve made, with a lighted candle on them, and make a wish before blowing out the candle. Alli wished for a cure for cancer, Noah wished that the children with cancer get better and don’t die, and Leah wished that we can go back to Camp sunshine next year. I hope that they all come true!!! The end of the week is always difficult and tears are shed because it’s easy to become attached to the wonderful people there. Again, hard to describe, but suffice to say, some really strong bonds and friendships are developed over those quick few days. The kids are already talking about next year (Alli will be old enough to climb the rock wall and do the challenge course and go on the overnight sleep-out!) and we’re already trying to figure out a way to make it happen. (and hoping he won’t be in Iraq!)
The night after we returned from camp, the girls had their dance recital. They did very well and looked adorable (Alli probably wouldn’t approve of this term for a girl her age!). Leah’s class did a tap dance to “Yankee Doodle Dandy” and Alli did 3 routines: tap, jazz, and clogging. They were both great!
The next night (are you tired yet?) we went to the Taylor Swift / Rascal Flatts concert where we got to go backstage before the show to see Taylor on her new tour bus!! She is so adorable and was very sweet. It was all too brief, we were in and out in a flash, wishing we had just another minute or two, but feeling so lucky to have been there in the first place. We did take a photo with her as a family and of her with Leah. She signed a couple of things for the kids, and I had a quick chat with her mom. (Reminder: we met them at the radio station in Houston a few months back and her mom promised the kids that when she came to San Antonio they’d get us tickets (that had a $100.50 price on each!!) and let us come in the bus.) Her mom was working putting some photos in a scrapbook and gave one of them lo Leah as she looked on, then when Noah discovered some guitar picks in a cup holder told him to take one for himself and each of the girls. Such nice people! We didn’t really get to talk to Taylor, it was more of a hi and bye, it was literally only a few minutes before the show, but Leah had drawn her a picture before we got there and she was able to give it to her,* and Alli gave her a note that she brought from one of her counselors at camp. *When Leah drew Taylor a picture she decided to make the dress in the picture light blue with dark blue flowers. . .guess what Taylor was wearing when we met her?? You got it! A light blue dress with dark blue flowers!! Leah was thrilled! (to be continued. . .)
Thursday, July 3, 2008 2:17 PM CDT
Part 3 of 3:
Noah finished up his baseball season in early June and his team tied for 4th place out of 9 teams. They were the youngest team in the league (it’s a 6-8 year old league and we were the only team without a single 8-year-old) so we were very proud of their season. His team had their end-of-season party at a San Antonio Missions (San Diego Padres’ minor league team) Game last Sunday where we had a pre-game picnic with hamburgers/hot dogs/ice cream, etc. and then he and his teammates got to take the field with the Missions player in their position and stay until the National Anthem was over. It was really cool! All 3 grandparents were able to join us for the party and game so that was also a special treat! Noah is going to UTSA Baseball camp later this month with some friends from his team and he is looking forward to that.
Alli and Noah participated in Alamo Area Summer Swim League again this summer. They did very well. It was a short season with only 3 regular meets and divisionals, and we missed one meet while we were in Maine, but they still managed to collect quite a few ribbons! They have improved drastically over last year, cutting their times to less than half! The divisional meet was last Saturday and they each took a bronze medal in individual backstroke, Alli took 8th in her freestyle, Noah 5th in his freestyle, Alli’s relay team took a gold medal and Noah’s relay got a silver! Not a bad way to wrap up the season! Nonna and Papa (in town for the Missions game) got to watch too, so that made it even better!
Alli has one last dance competition this weekend, Starbound Nationals, and then we’re done with dance until August. Alli will move up to the senior level next year which will mean a few more hours at the dance studio each week.
Billy is still working the weekend night shift at Wilford Hall. We are thinking maybe that he’ll get off that schedule and go back to days sometime in the fall. For now, it works nicely to have him off during the week so that we can run around and play this summer. We have beach plans and lots of fun day trips still on the agenda! He is scheduled to deploy back to Iraq in January, this time it would be for six months. Of course, in the military, everything is always subject to change. They are looking at a scenario now where they might possibly pull nurses from other hospitals who haven’t been to Iraq (WOW! What an idea!?! You mean, we could send nurses who haven’t been instead of sending the same ones over and over?!) and then send our nurses to fill in their spots while they are gone, meaning that he would be sent to Florida or somewhere while the nurse there got to do a tour in Iraq. That is in very beginning stages and neither Billy nor I are holding our breath, but we’d take it!
Okay, I think this holds the record for longest update ever, so I will end it for now! I’ve changed the links at the bottom, and will be updating photos as well. We hope you are having a great summer! Let us know you’ve visited by signing the guestbook and/or the buddy map!
Thursday, May 8, 2008 9:19 PM CDT
Hi there! Wow how time flies when you're having fun! Here's our latest. . .
Leah had an eye exam last week. She did very well and only cried at the dreaded eye drops. The doctor said that everything looked good and she will check again in 4 months. If everything is good at that check, we will begin to space to every 6 months! So, that's great news, but that's not all. . . she also said that at this point she sees no reason to do exams under anesthesia any longer and that from now on, we should be fine with just the office exams. Leah is scheduled for an MRI and visit with the oncologist in early June. That one will be a little harder, because it will require an IV for sedation. The MRI checks the brain and orbits to ensure that nothing out of the ordinary is going on in there. After the MRI we visit the oncologist to do an overall health assessment.
April was a busy month for us. Noah has been playing baseball and is doing quite well. His team is so far in a position to make the playoffs. . . they go back and forth, but for the most part have stayed within the top 4 teams. Alli competed in another dance competition where her group earned a high gold and 9th overall. We've been on school field trips with both of them, once to the zoo, and once on a nature hike. Alli enjoyed her "special day" with mom and dad at the performance of Michael Flatley's Lord of the Dance. She & I have seen it before but it was just as good as we remembered and we all enjoyed it. Leah got her "special day" with a trip to Kiddie Park, an amusement park for little kids with all kinds of "ride around in circles" rides. :) (Noah's special day alone was back in January to see the Globetrotters, so don't think he was neglected.) Billy was Flight Commander for 59th Medical Wing in a big military "Fiesta" (A San Antonio thing) parade on base. It was a big to-do! We were proud of him. I am playing softball with a friend's church team and it's been lots of fun. . . not quite the leisurely "church league" I anticipated (these girls can play!), but lots of fun! Swim team begins in a couple of weeks and the older two are chomping at the bit. Also, during April we had to put our beloved lab, Barley, to sleep the day before her 13th (101 in dog years!) birthday. She had grown very sick and it broke my heart to let her go. She was so sweet and good with the kids. We will likely get another dog, but have decided to wait until after the summer months when we won't be travelling and we'll have more time to spend with a puppy.
We made the decision to keep Leah home another year and start her in kindergarten at 6, like we did with Alli. She is smart as can be, but with that August birthday, we just worry that in later years when there are many pressures and such, that that year will really count. We'd rather her be on the mature side of her peers. Besides, kids have to grow up so quick these days, we're just not ready to rush it! We've always been very happy with that decision for Alli. We have signed Leah up for a nice, structured Mother's Day Out at a nearby Catholic church and we think it will be great for her. She is excited about attending.
Tomorrow Leah will do her SuRvIvOr's LaP at the Relay for Life. We couldn't be more proud to participate! We made the goal of raising $100 for the American Cancer Society this year and thanks to help from our friends and family, exceeded that goal! What a great cause. Many thanks to The Fletcher, Appelt and Schneider families and to Grandpa Van B and Aunt Tricia for donating in Leah's honor. We hope that next year we might join an Rb friend's team or create our own team for the walk. It is really a neat event and they are held all over, so check it out when there's one near you. You can get more info. at the website listed below and it's not too late to donate! I will post photos when we have them. In fact, I was planning to post other photos today but I think I'll wait till I've got the relay photos and post them all at once.
Hope this note finds you well. We love to hear from you when you get the chance, so sign our guestbook and buddy map and let us know you've visited!
Take care!
Sunday, March 30, 2008 10:56 PM CDT
**New photos in photo album too**
Hi there! Thought it was time for an update. Here’s what’s been happening in our little corner of the world. . .
We are, as always, busy with the day to day running kids from here to there. All 3 competed in the CYO track meet in February. They put forth a good effort in the sprint races they were in and Noah and Leah took first place in the standing long-jump for their age groups. Leah didn’t actually have any competitors (although she jumped an admirable 2 ft. 9 in.), but Noah beat out his entire group on all 3 of his jumps. Noah finished basketball season and can’t wait to play again. He really loved it. For now, he is playing coach pitch baseball; he is on the Braves this year. Alli has competed in several dance competitions with her clogging group and they have done very well, making the top ten overall in each competition. She got braces in February, which thrilled her. She looks so grown up with them. Leah is still enjoying gymnastics and dance. She recently had to have a mole removed for biopsy. It was not a very pleasant (in fact, quite traumatic) experience. It was in a not-so-great location in a nether region which made it even more of an issue. Bless her heart; she is so scared by all things medical. I am happy to report that we just got results back and it was atypical but benign. I can’t tell you the weight that was lifted with that report. Because of her genetics, her risks for additional cancer are always present and mostly we keep the thoughts pushed under the surface, but for the week we waited for results, it was a nagging thought. Also, after skirting around it for about a year, we are actually using the word asthma with regard to Leah. We visited a pulmonologist earlier this month and have since been on some new medication that seems to work quite well. We will visit the ophthalmologist in late April for her next eye check which will be done in office, and she will get her MRI of eyes and brain in June.
In general, though we live a crazy schedule, we have been having lots of fun. We have made several trips to the Houston area lately. Billy has been working weekends, so the kids and I have traveled alone. In early March, we enjoyed some time at a family reunion and were also able to visit with my aunt and uncle from California. Then, we returned during Spring Break for a really cool event. This one requires a little background info. . . Leah absolutely LOVES Taylor Swift, the country music starlet. We listen to Taylor in the car, at home, everywhere. Leah sings along to every word. When Taylor comes on t.v. Leah’s head whips around, she plays “Taylor Swift,” etc. I am never allowed to be Taylor when she is playing – only she can be Taylor, I am only allowed to be Carrie Underwood – ha! Anyhow, she has drawn the whole family into her Taylor obsession and we’re all big fans of hers now. Leah is eligible and we have been waiting till we felt she was old enough to remember before we apply for Make-a-Wish. So we often talk about her wish. . . whatever may be suggested by her siblings is always met with “. . . or meet Taylor Swift!” So, Billy and I were talking about how maybe we’d check to see if Taylor was performing in our area in the near future. After searching the internet a bit, I was finding little information when I thought of a friend who works at a country radio station in Houston. I emailed her to see if she could tell me if she knew about any upcoming concerts. Cut to Spring Break. . . so thanks to my friend, the kids and I wind up going to an event at the radio station where we get to meet “Up Close and Personal” with Taylor Swift. For almost 2 hours, she did an interview, sang a few songs, and was just precious! Love that girl! She is so cute and has an adorable personality! We were able to take a photo and get an autograph too. Since our friend at the radio station had told Taylor and her mom all about Leah, we also met her mom and one of her record company reps. Her mom and the record label lady told us that she would be touring with Rascal Flatts and that they would be coming to San Antonio. Her mom then proceeded to tell us that when they came, they would make sure that we had tickets, AND that she would take the kids out to see Taylor’s new tour bus to see where she sleeps, etc. How ExCiTiNg!!! We can’t wait! During Spring Break Billy and I went to see Phantom of the Opera which was very good. We took the kids to see “High School Musical on Ice” also. They loved it of course, and it was all the more special because Alli’s best friend from Alvin (since they were 2) was in town and we had an extra ticket. She was able to join us AND spend the night which was lots of fun! Next, we are working on plans to return to Camp Sunshine in Maine during the summer. Billy wasn’t able to go with us last year, so we really hope we can make that happen. We’ve been accepted to the camp, but we’re trying to work out the airfare, which is very expensive. It was such a good experience for all of us last year and especially for Leah who was able to identify with the other kids “just like her.” Other events on our horizon include Relay for Life, Alli’s first Communion, the girls’ recital, and of course a few beach trips during the summer.
On Tuesday of last week, our family was blessed with a new member, my newest nephew, Aaron. He is precious! I was able to go stay with the 3 other nephews while their mom and dad were at the hospital. That same evening we lost Billy’s uncle after a long illness. He was a simple man who never married, but valued family and children, and he will be missed.
Thanks so much for checking in with us. We’d love to hear from you too, so if you get a chance, sign the guestbook or drop us a line. Take care!
Tuesday, January 15, 2008 5:31 PM CST
Hi there! Well, you know they say that no news is good news. . . it’s been forever since I updated this site! Despite MANY good intentions, I just have just been busy with our daily life and after moving it from “to do” list to “to do” list, here I finally sit! Maybe I’ll just wipe the “Christmas Card” off the list this year and hope I do better next year. sigh. I have updated the photo album too as well as the links. The Imaging Studios link has both girls’ most recent photos (plus some older ones of Alli too) under Galleries and then Kids. Alli is on the front wearing pink – and she and Leah are both in the gallery with several photos of each. The ice cream photos of Alli are from 2 years ago, but the pink background and the light blue background of Leah are from August. Noah’s most recent photos are under online viewing but only for the next week or so – you have to go to online viewing, then vanbeveren7, and use the password is3470. Check them out – they turned out really cute! The kids as you can see are getting too big too fast.
After Billy came home, we enjoyed a few weeks of his being off before having to return to work. But, all good things must come to an end, and we settled back in to our routine. Billy is still working in the O.R. at Wilford Hall Medical Center. He is due to return to Iraq next January unless something changes before then.
I am still running the kids here and there and trying to maintain some sense of “normalcy” to our daily lives. I play bunco with a group of ladies once a month which I really enjoy.
Alli is enjoying second grade and does very well academically. She has very much loved her teacher this year, so it’s with great sadness that he leaves her class on Friday to pursue another opportunity. She is looking forward to getting to know her new teacher. She is still dancing several times a week and is gearing up for competition season with her clogging class. She recently won the “Tim Duncan Character Award” which is given to a student nominated by a teacher (in this case her school counselor) for having outstanding character. The counselor wrote a paragraph about her giving up her recess several times a week to help in the preschool classroom. She was the only recipient at her school (1300 kids). She was given two tickets to the Spurs game, a t-shirt and certificate. It was really neat because San Antonio is a big city and she was chosen to be a recipient of the award from among kids all over the city. We had a good time at the game. With Billy back, she seems to have lost the majority of her anxieties that were plaguing us earlier in the year. She is also still swimming and has really developed her skill. She should be pretty competitive this year in Summer Swim League.
Noah turned 7 the week before Christmas. He is growing like a weed. He has now passed Alli in height and weight. He played coach pitch baseball this fall and enjoyed it. He will begin again in a month or so. He has been playing on the CYO basketball team for our church and loves it. He is the tallest kid on the team so he always gets to do “jump ball” and he’s pretty happy about that. Somehow, despite his parents’ previous lack of interest in the sport, he is really a pretty good little player. He loves most outdoor sports in general. He is in first grade and also does very well. He has been hunting with his dad this fall and is quite a fan of it. (He is just an observer at this point.) He is really happy with his dad home. He too is taking swimming and does very well.
Leah enjoys Mother’s Day Out with gymnastics, and she rolls and jumps and tumbles all over the house. She loves learning about the alphabet and tells us the beginning letter of everything. She also has a unique skill. . . she can recite her alphabet backwards just as easily and quickly as she does forwards. I stumbled upon this skill accidentally. I think she just analyzes everything. She still takes dance once a week and swimming as well. Hopefully by summer, she will be swimming on her own. She had an EUA (exam under anesthesia) on January 3rd. Everything looked good and we do not have to see the doctor for another 4 months, which will be an office visit. Bless her heart, she HATES those eye drops and she hates going to surgery. She was fine and dandy until we passed through the door to pre-op and then she lost it. It’s all too familiar, I guess. Fortunately, we’ll only be doing the surgery and the MRI once a year now, with office visits every four months. MRI will be in June.
We celebrated Christmas here with my parents joining us this year. Santa was good to us and God has blessed us abundantly. We hope this new year finds you happy and healthy!
Drop us a line or sign the guestbook when you get a chance. We love to read it! Also, if you haven’t already, would you please sign in on our buddy map? All you have to do is click the following link and post your name and city. If you’re inclined and extra-savvy, you can add a photo or message too, but we really just want to track all our visitors and see where they are from. Please? Thanks!
Blessings to you and yours!
Monday, December 31, 2007 0:47 AM CST
Update coming soon. . . I promise!
Friday, October 5, 2007 3:47 PM CDT
Halleluiah, he’s home! I should’ve probably updated before now and I know many of you have been wondering, but the last few days have been a blur – but a happy blur!
We originally thought Billy would be back last Friday, then we had an actual flight reservation for Saturday, but as is the military way, that was changed as well. He finally got home on Sunday. He finished up in Balad on the 20th, spent a few days in Qatar, and then flew to Baltimore via Germany. He was in the U.S. Saturday evening by 5:00 our time, but it was the case of “so close and yet so far.” There were no outgoing flights that could get him to San Antonio until Sunday. (For those of you that are counting, yes -- that means I missed my ballgame – a heartbreaker, but of course, well worth being here instead!)
His flight was scheduled to arrive in San Antonio at 2:30 p.m., but there was an earlier one that would arrive at 11:30, so he woke up early and tried to get on it – and things looked as if he would, but at the last minute he was told that, though there was an empty seat, the baggage weight on the flight was too high and they couldn’t let him on. So, the kids and I went at 2:30 to pick him up. It was so wonderful and memorable. We got there early and we were all so excited. We got our gate passes and went through security and then began the longest 40 minutes of our year! “Mama, is Daddy here yet? What time is it? Is it 2:30? Is that Daddy’s plane?” Billy’s plane was supposed to arrive at terminal 35 – which was very crowded with other outgoing passengers, as was terminal 34. So, we found some seats in terminal 36 where we could sit and wait. After changing seats about 4 times, we finally found just the right spot to where we could see out the window near terminal 35. We visited with some elderly folks seated nearby - each of the kids had made a sign to welcome Billy home and the people asked, “Is someone special coming home today?” That’s all it took to get them going and tell all about their daddy and what was about to happen.
Finally, about 2:40, I saw an American Airlines plane come in and as it headed toward #35, so did we. We said goodbye to our new-found friends and headed over to the doorway where Billy would be exiting the plane. I tell you it was soooooo exciting! The kids were beside themselves and I was shaking like a leaf – he was finally home! There were two other families there also waiting to greet service members that were flying home as well. One of the groups also had “welcome home” signs. It was really neat to see that in both crowded terminals on either side of the doorway, people began to realize what was about to happen. You could tell they were touched, but what happened next was awesome. As the passengers began to come off the plane (no servicemen first on this flight) we saw the first airman in uniform – not Billy but another dad – and as his family greeted him and they shared a big group hug the entire area erupted in applause and cheers! It was really neat. Then another airman greeted his family, another airman, and then finally Billy. The kids ran to him and excitedly began talking to him and telling him about their signs - it was fabulous! The crowd in terminals 34-36 and those in the sports bar behind them cheered for each of the military members coming off the plane, and as we walked through the airport to claim Billy’s baggage he was greeted along the way with “Welcome Home” and “Thank you for your service.” It was really nice. I can’t tell you how nice it is to hear that from random people you don’t even know.
I tell you, 4 ½ months is a long time to be apart, especially when I can hear mortars and alarms going off in the background during phone calls. Of course, Billy just went because that’s his job, and a life we chose, I might add. BUT, it means a lot when people appreciate the sacrifice that military families make. We’ll never forget the day in Houston when he was eating lunch in uniform, and when he went to pay the bill a stranger had already paid it anonymously. It’s just a nice touch. So, if you see a military member, say thanks. It feels nice to be appreciated.
We jumped right back in to the routine: Sunday evening swim lessons, Monday evening baseball and clogging, Tuesday evening dance, Wednesday morning dance and evening Religious Education, a break on Thursday, baseball practice on Friday and there’ll be a double header on Saturday! NO rest for the weary! Billy has taken the kids to school and tried hard to listen to and look at every little thing he’s missed over the last 4 ½ months – it’s been a whirlwind I tell you! (A bit of sensory overload too, I’m sure!) He had to report to work on Monday before he could begin his leave, and the rest of the week has flown by! We really have had very little time at home even – he just finally unpacked last night. So, if we didn’t call or let you know personally, please don’t be offended, it has just been crazy since he arrived.
He has come home with loads of photos and stories and a renewed appreciation for life as an American. He told me that if all Americans could just go over for a day and see how life there is, they would be less worried about “the small stuff” and more grateful for the life they have. He saw some really sad things there and made some interesting friends. We continue to be so grateful that he was on the airbase where life is safer. Also we’re blessed that he was in the hospital where communication with us was readily available and that his deployment was only 4 months. We have such respect for the men and women “outside the wire” (in the thick of things, not on an airbase) and the families that wait for them to return.
Many of his “friends” in Iraq are there for years at a time without visiting their families. While he was there he became friends with John, a Ugandan guard that worked at the hospital. Since Billy returned home John sent an email that I think is special enough to be shared. John’s email to Billy reads exactly as follows:
Hei,it's long now since you departed from the desert ie Iraq,i beleive you are now at home.I asure you that me as one,miss you so much.Your group was characterised by being good,hard working and inteligent p'ple.Thanks for all you did in Balad,thanks for taking care of us Ugandans and i thank esp. your Gov't of USA which has AMBITIONS of PROMOTING PEACE IN THE WHOLE WORLD,MAY GOD BLESS THEM. JOHN-UGANDA [ HOSPITAL-SECURITY GUARD ].
Nice, huh?
So, for the next short while, we are catching up around the house and just enjoying Billy’s time off between the kids’ extra-curricular stuff. Health wise we’re hanging in there ( A few weeks ago, Noah got a touch of pneumonia too, but is better now) and just fighting the fall allergies. Leah will likely get new glasses next week (still just clear glass for safety) because her old ones are so scratched up-- I’m not even sure how she can see! All 3 are gone with Billy now to get a flu vaccination. (fun for him, hee, hee.)
We appreciate your friendship and prayers! I have put new photos in the photo album, and I have included a few new links. One shows some footage of the hospital where Billy was and one is a very short clip about detecting Rb and retinoblastoma awareness (feel free to share with any friends who have young children). Please take a minute to sign the guestbook when you have a chance. We love to read the entries. After almost 10,000 visits to our site, we are trying out a new map feature that will show us where all of the people who check our page live. Please sign in!
Take care and be blessed!
Monday, September 10, 2007 10:36 PM CDT
Hi there!
I am finally getting around to the update. We have been busy around here! When I last updated, we had only a few weeks of summer left, and here we are with school already in session and only a few weeks till we celebrate the day we have been dreaming of since May – Billy is coming HOME!
We finished up our summer with a bang. One more trip to the beach house, where Noah learned (for the most part) to ride his bike with no training wheels (still too sweaty for Alli – maybe she’ll try later), we enjoyed goofing around with “Flat Daddy” (our life-size Billy cut-out) and Nonna and Papa.
We also went to the Biggio Baseball Party hosted by Craig and Patty Biggio at Minute Maid Park. The kids got to play ball on the field, and we had a wonderful afternoon! We got cotton candy (I think Leah had two bags for lunch), popcorn, hot dogs, nachos, cokes and all kinds of junk! Leah was on the news on several Houston channels in their footage of the event. One of the best parts was seeing our special friends from that area. Leah's Rb buddy, Maycie, lost both eyes to retinoblastoma. We see all the same doctors, as Maycie was also treated at Tx. Children’s Hospital. Her sister Victoria is great friends with Alli from their time at camp (in Maine this summer). Her parents and brothers are always fun to be around and we always have a good time together, so the fact that they were there too made it extra special. We caught a San Antonio Missions (San Diego’s minor league) ball game the last weekend before school and it was great fun too – Leah loved “the puppy” i.e. the mascot dog named Extra. Check out the photo – I think he loved her too!
During the time we spent at the beach/Alvin, and shortly there before and after, I had pneumonia and pleurisy, which is quite uncomfortable to say the least. It was nice to be with family during the worst days of it and my parents were a huge help. My washing machine broke and flooded my kitchen/laundry room on the morning I was leaving for that trip (this after the back door leaked and soaked a section of the living room carpet during a major rainstorm a few days before), so needless to say, between my feeling bad and one calamity after another here, it was nice to get away a bit. My sweet parents gave me the most wonderful surprise on our return. We were hustling back to get to “meet the teacher” night on the day we returned, so we left early in the morning. About an hour after we got back to our home my dad called and asked if my repairman had showed up yet (he had said he’d try to find out a reputable company in our area). Thinking he was just being silly I told him no and we went back and forth a bit before he told me that my repairman ought to be there any minute. Lo and behold, there in front of the house pulls up my parents who had, unknown to us, followed us back to San Antonio with a new washer. He installed it, took my old one, Mom helped iron the kids clothes for meet the teacher, Dad helped get the dead cricket (ewww!) out of the big light fixture in the kitchen, and off they rode into the sunset. Four hours there and four more back, . . . that’s love. It made me feel unbelievably loved and taken care of – it was such a relief at a time I was really not feeling well.
The next day Alli celebrated her 8th birthday. Unfortunately, a large part of the day was spent in the doctor’s office and then at the hospital getting the x-ray that diagnosed HER pneumonia! I am glad to say she recovered very quickly and is doing just fine now. You’ll see in the photos that her daddy was able to “be with us” via computer while she opened her presents. That was neat. She had a celebration with family at the beginning of the month, a celebration with friends a week before her actual birthday, and we went for a birthday dinner on her actual birthday – that girl knows how to drag it out!
The kids have all started school and are, I am pleased to say, enjoying it. Alli has Mr. Barrs for 2nd grade. He is very nice. This is his first year teaching. He has previously taught flight training to Air Force Academy graduates! We think he’ll be great and he has been very sweet about her anxieties and helping to reassure her. Noah has Mrs. Ramirez who has taught first grade for 11 years. She seems great and she has told me repeatedly how pleased she is to have Noah and how wonderfully well-behaved he is. "If everyone in my class was just like him, it'd be great." (hmmm, he must save it all up for home!) Leah is loving her “gymnastics school.” And, frankly, so am I! It’s weird to have a chunk of time to myself, but, by golly, it’s nice!
The kids have started their extra-curricular activities as well. Alli and Leah are dancing, Noah will begin baseball soon, and Alli and Noah are attending religion classes. Alli will make her first Holy Communion this year and she is quite excited about it. She has decided not to try to be on the dance competition team this year because the time requirement is a lot. She will compete with her clogging class, so she'll still get that chance. (whew! That highly-influenced decision freed up a couple afternoons a week!) They have spent a lot of time outdoors lately – they love to ride their scooters, bicycles, etc. Just last night, we went (they on scooters, me on feet) for a good scooter ride down the hill and back (thank God for helmets because that steep hill had me quite nervous a time or two.) Then Noah and I played catch (wow! He’s getting good!!) while Leah rode her bike like a little Tour de San Antonio girl and Alli got a cool towel to put around her neck while she tried to coax us to come in where there was air conditioning (remember she won’t go in by herself because then she’d have to let me out of her sight!) She’s hilarious – so dramatic and girly and such. I always say something happened and she must really be her Aunt Bridget’s child!
Leah broke her glasses in half (second time) week before last and we are waiting for them to be fixed. Thank God for the wonderful place we go to in Houston – I mailed them in and they are going to replace the frames and send them back. Fortunately, we get 5 full sets of frames before it costs us. The lenses are very scratched, so much so she doesn’t really like to wear them much these days. The next time we go to town, we will probably order a new set of frames and keep this pair as a backup. Meanwhile her Daddy was having a conniption over the fact that she was going to be starting “school” (pencils and scissors, let alone gymnastics!) with nothing to protect her eye – which is why you’ll see her in her Tinkerbell sunglasses in her first day of school photo! She and Noah are both a little under the weather and will see the doctor tomorrow for a cough and fever and runny nose, but she has not had any more strep. We have cancelled the tonsillectomy for now, and will do it later if need be after Daddy returns.
Billy is due to return to us at the end of the month. I can’t tell you how often I have dreamed of the day! We cannot wait to have him back. We won’t know a specific date until it’s actually happening, but we are hoping he leaves Iraq around the 21st, stays for a hopefully short time in Qatar, and then to Baltimore before San Antonio. Please continue to pray for his safety. In fact, please remember all the troops AND their families who miss them. It’s so close now and my nerves are on edge. I know that things have escalated a bit because of Ramadan and there continues to be a pretty steady barrage of mortar sent over the wire at Balad. Several hit quite close to the hospital while we were on the webcam one day recently. It’s a little unnerving to hear. Billy has protected me from most “scary” stories while he’s been gone but I know a doctor serving with him was hit by a stray bullet the other day. Bottom line, is that I will sleep better when he is safe back with us. That said, I want him home most of all, but we are also very much hoping that he will come back before or after the 30th but not on that day. I will be flying to Houston to watch my Astros’ last game of the season and my fave Biggio’s last game before retirement. I really don’t want to have to choose between Biggio’s last game and greeting my husband at the airport!! Billy would win out no doubt, but the baseball-lover in me is dying to be at that game!
Speaking of Biggio – he is up for the Roberto Clemente Award for Community Service. There is a link to astros.com at the bottom of the page that shows him and the Sunshine Kids (guess who is in that photo? My Leah!) From that page, you can click on the vote link and vote for him. If you would be so kind, I’d love it if you could vote for him. He’s such a good guy and you might win tickets to the World Series if you do! Thanks.
One last thing. . . On September 22, Leah will be cancer-free for 3 years! Hallelujah! There were days that were very rough in our journey with her, but many of you have been there through it all, and we really do appreciate your support. I love that I have this website that kind of chronicles it all and has your messages of support that I can share with her when she is old enough to appreciate them more. This is also Childhood Cancer Awareness Month. Throughout National Childhood Cancer Awareness Month in September, the Chili’s Grill & Bar restaurants nationwide will encourage patrons to make a donation to St. Jude for the opportunity to receive a "Create-A-Pepper" coloring sheet. Guests’ coloring sheets will be displayed in restaurants during the month. Restaurants will also raise funds through the sale of "Create-A-Pepper" gift cards, dog tags and T-shirts. In addition, Chili’s WILL DONATE 100 PERCENT of its SEPTEMBER 24 profits to St. Jude. It’s a tremendously generous gesture on the part of Chili’s Grill & Bar, and St. Jude’s is a most-worthy charity. Please eat there on Monday the 24th if you can. Heck, eat there twice – it’s good! :) The little girl on the coasters is an acquaintance. She too has retinoblastoma. In fact, she will be on Good Morning America on the 11th tomorrow morning (see more about her at http://www.stjude.org/corporate/0,2516,410_2034_23636,00.html
and I believe that the little golf prodigy boy who has retinoblastoma is going to be on the Ellen show tomorrow. What great publicity and awareness for Rb. This is an issue that brings me great frustration – children are still dying from retinoblastoma because not enough people know about it and the child is diagnosed too late. It took me 4 visits to the doctor to convince them something was wrong with Leah. Do me a favor and tell someone you know with kids under 5 about retinoblastoma – to especially be aware of the most prominent sign – a white “glow” where the pupil should be black or is often red in photos. There, now we all did our part a little! Please also remember to pray for Leah’s continued good health and for all the little ones fighting this awful disease!
Well, now I see why I took so long to sit down and do this update – I had a lot to tell! I hope the webpage will let me put this much on there! For those of you who have written me personal notes or notes in the guestbook that I have not answered, please forgive me. I really have been ill and then catching up in the last month. I love to get them though. There are new photos in the photo album and new links at the bottom of the page. The girls’ new photos will only be there till Sept. 21st and you gotta vote for Biggio once a day till October 5th ! (or at least check out Leah’s pic).
Be blessed!
Tuesday, August 14, 2007 11:00 PM CDT
***New photos in the photo album***
Hello there!
I apologize for taking so long to update. Our summer is flying by at record speed. We have kept very busy and spent little time at home. We have had a lot of fun! When I last updated, we were finishing up swim team and dance recitals and had just returned from Maine. Since then, we spent a week at Nonna and Papa’s new beach house at Crystal Beach, did swim lessons (Leah), spent many afternoons at the neighborhood pool, spent a few days with the cousins visiting us here in San Antonio (we saw the Go Diego Go Show – which was lots of fun), went back to the beach house for a little birthday party for Leah, and stayed in Alvin for another 7-8 days for medical appointments, the Craig Biggio Sunshine Kids Celebrity Golf Tournament (we were one of about 5-6 families invited to come represent the Sunshine Kids), and such! With school less than two weeks away, we’ve just enough time to make one last trip to the beach and cap it off with the Craig and Patty Biggio Baseball Party at Minute Maid Park where we will get to play a little ballgame with Craig. He is the spokesperson for Sunshine Kids and such a genuinely good guy, plus he’s really hot! :)
Of course, Billy is hot too – literally and figuratively. Hee, hee. He has 37 days left before we can begin the process of getting him home, and we are all more than ready! They have moved out of the tent hospital into a fixed building that has a more effective a/c which is good. Of course, he was part of the “moving crew” so that wasn’t a whole lot of fun. He has been fighting a heel spur for a while which was quite uncomfortable, but I believe that is under better control now too. He did a duathlon a few weeks back – swim and run – crazy boy can’t resist a physical challenge and free t-shirt even in 130 degree heat! His “bingo” date is September 20th and his replacement is slated to be there by the 18th. Hopefully all will run smoothly and they’ll get him home by the 27th or so. It is the military though, so we won’t hold our breath. I personally am hoping he might accompany me to Craig Biggio’s final game as an Astro on the 30th, but I’ll be happy if he’s home for my birthday, October 2nd.
The kids are enjoying summer and not particularly looking forward to the beginning of school. They are beginning 2nd and 1st grade and will attend the same school they were at last year. It is about a mile from our house. Leah is going to attend a Mother’s Day Out program 2 days a week at a local gymnastics place. They do a regular preschool-type curriculum and include 1-hour of structured gymnastics. I heard from many parents at camp how gymnastics has helped the balance and depth perception of their monocular child (which are common weaknesses), so we think this will be a good program for her.
Alli will be 8 on the 24th of this month. Holy cow. She will still be dancing this year – clogging, ballet, tap and jazz. She’d add hip hop if I let her, but I’ve drawn the line. She wants to try out for the competitive group (and was actually asked to do so), so that adds some extra time commitment as well. She will also take swim lessons to further her skills and improve on the different strokes. She visited the orthodontist yesterday and it seems that in the next month or so we will be extracting 6 (yes, SIX) of her baby teeth to make room for the big guys. Like mother, like daughter I suppose. Unfortunately, her teeth are going to be as crowded as mine were. Finally, I’d like to mention something I wish you would help me pray about. She has really struggled this past year adapting to the move, dealing with some fears (long story), and her daddy’s deployment. She has great separation anxiety and has difficulty letting me out of her sight. Please say a prayer for her on this issue. It is really a paralyzing, irrational fear for her and something I’m concerned about.
Noah is 6 ½ and growing! He now weighs more than Alli although she still has him beat in height by about ¼ - ½ an inch. His shoe is barely smaller than mine – I wear his flip flops all the time if I just need to run outside for a minute or something. He will be playing Fall Ball with Helotes Little League. He will also be swimming with Alli. He lost his first two teeth last month at a visit to the dentist – had to move them out to make room for the biggies coming in behind (sound familiar?). He is very much a lego guy these days, creating all kinds of things with those colorful-tiny-painful-if-you-step-on-them blocks. He had a rough time at the beginning of the deployment behavior-wise, but has really gotten better as of late. His daddy’s coming home will be so good for him.
Leah celebrated her 4th birthday on the 5th of August. Where did that time go? She is growing like a weed and tall for her age. I actually had a lady at the neighborhood pool (mind you we were in the water, so height was a little hard to judge) ask me if she was my 7-year-old. She took swim lessons for 2 weeks during July and loved it! She will continue in the fall and I hope to have her swimming on her own soon. She is and has always been very much a fan of the water. She will also continue taking ballet and tap dance which she loves!
Her eye exam went very well last Monday. She did it like the champ she is! The doctor and I discussed the pros/cons of the office visit versus the EUA (exam under anesthesia), and though the office visit allows her to see all but 10 percent of the eye, and Leah has never had a problem in the right eye, her genetics make us a little more cautious. We have decided to do an EUA at least once a year and office visits the other times. We are now on a four-month eye exam schedule, with MRI only once a year. Until she is 6, this plan is a little safer. For those of you who may not remember, Leah’s genetic analysis proved her to have heritable unilateral retinoblastoma. This means that although she did not inherit it from Billy or me, she carries a gene mutation that will give her offspring a 50 percent chance to have retinoblastoma as well. More importantly at this stage of her life, it also means that she is at much greater risk to develop other secondary cancers. Most cancer survivors are less likely to get additional cancers the longer they are cancer-free, but for Leah it is the opposite. We try to just use that information to be cautious and appreciate her current health. We will celebrate 3-years cancer-free next month – woo hoo! Also on our recent trip we got her glasses and her eye adjusted and polished, so she’s looking rather spiffy! (She and Alli just had new photos made, I’ll add the link when they are available for viewing). On Tuesday, we visited the ENT for a follow up on the hearing and also to discuss with him the recurrent strep throat that Leah continues to get (3 times since June – plus Noah and Mom (oh no!!) have had it too!). Great news is that she passed her hearing test this time!! We have scheduled her for a tonsillectomy in September. I may put it off until October, or just wait and see if she gets strep again. The doctor’s concern is that she is getting it closer and closer together and that it is summer – not even cold and flu season! She’s had it 5 or 6 times since January. If we go ahead with the tonsillectomy, that ENT practice will have had FOUR tonsillectomies, 4 sets of ear tubes and adenoidectomies this year from mine and my sister’s kids. I think they should name a room after us!
Well, I suppose this is quite enough for now. I should try to work on shorter, more frequent updates, but it just doesn’t seem to fall in to place. Take care, enjoy the little bit of summer that’s left and be blessed! Thank you for caring about our family enough to check in! Leave us a note in the guestbook when you have the chance – we love to read the messages.
Wednesday, August 8, 2007 0:28 AM CDT
Quick note to say that all went well at all the doctor visits over the last two days. Thanks! I will write details soon.
Monday, August 6, 2007 1:24 AM CDT
Please pray for my sweet girl today as she has her eye exam. I will update when we get home. Thanks.
Saturday, June 30, 2007 4:48 PM CDT
***New Photos in the photo album!!****
Howdy! It’s taken a week or so, but here’s the update I promised. We had a wonderful, wonderful week at Camp Sunshine in Casco, Maine. It is a camp for children with life-threatening illnesses and there is no charge to the families who attend. We were there for the first-ever retinoblastoma week. It was really neat. There were 31 families there and most of the children with Rb had lost at least one eye. Even at Leah’s age, she was thrilled to meet kids “just like me!” Many of the families we have communicated with over the years through an online group, so it was great to finally meet face-to-face. There were tons of teenage and adult volunteers (most of the time at least a one-to-two ratio if not more!) from all over the country there to help make the week a success – they were awesome! We had breakfast each morning and then the kids would go to their day camps (divided by age) and the adults had activities of our own. The kids did games, arts/crafts, swimming, miniature golf, waterfront activities (canoe, paddleboat, kayak, etc.) with their groups. The parents also did games, rock wall climbing (of course I did it! – and made it to the top too!), a challenge course (crossed a rope between 2 trees WAY up in the air – did that too!), and we had meetings where we could share our experiences. We would meet back with our kids at lunch and then the afternoon was much like the morning. We’d meet for dinner and then have familiy activities in the evening. There was a costume party, a dance, a talent show (Leah sang, Noah played piano, Alli danced), even a night party for the kids while the parents enjoyed a nice dinner and karaoke. It was sun up to sun down, full active days! The camp has the before-mentioned rock wall and challenge course, it sits on a 55-acre lake where we were able to do activities (Leah wanted to ride in the “camoo” (canoe)), a miniature golf course, a basketball court, an indoor pool, several playground areas, a bonfire spot where we roasted marshmallows, a computer room, shuffleboard, archery, library, you name it. The link below will show and tell you all about it. Like I mentioned before, the families attend free of charge! It’s a wonderful charity if you are looking for a cause. It was a refreshing week with great weather and a chance to meet with others who share our experiences. I can’t say enough good things about it!! As if camp itself wasn’t enough, we were treated to a limo ride on our way to the airport the day we left. It was wonderful. The airport, not so wonderful. After several hours waiting in Maine, we flew to New York where our 3-hour layover turned into 6. We arrived back in Austin at 2:30 Saturday morning and walked in our door in San Antonio at 4:30 a.m. It was exhausting but well worth it!
That night, we attended the girls’ dress rehearsal and the next night the dance recital. They did fabulous of course. There was an absolute downpour as we arrived at the building, but thanks to the help of my family, and Grandpa saving everybody seats, it all worked out fine. Allison won the “shining star” award and a trophy which is presented to a “stand out” dancer. That was neat! My family was here with us to lend a hand (and then some!) and witness it all, so that made it even better.
Monday the kids swam in their last regular swim meet of the season and today Allison had her divisional meet. She did very well and should receive 2 medals. Noah will swim his age group divisional meet on Monday and then we’re off to the beach house until next weekend!
Healthwise, we battled strep throat x 2 right before we left for camp and we’re going through it again now. Hopefully, we’ll get past that and avoid the doctors until Leah’s eye check on August 6th, the day after she turns 4. (Wow – where did THAT time go?)
Billy is busy in Iraq too. He has volunteered to be part of the Honor Guard at the base there which requires practice several times a week and often a time commitment on his days off. He has served at 2 memorial services thus far, including being the bugler at a service yesterday! I know, most of you are thinking “I didn’t know Billy could play the bugle!” And, you would be correct – he can’t! Luckily for him, nobody else can either and they have a special bugle with a button that plays a recording! He was quite proud of himself when I talked to him yesterday that people actually thought he was playing it.
He is hot and ready to come home. We are ready too. Unfortunately, we have only just passed the 1/3 mark of his time. I ask him regularly if he needs anything. There are only three things he’s actually told me. . . on a day that he was working his tail off and it was hot as can be, he told me, “If people ask if I need anything, tell them lotto tickets. . . lots and lots of lotto tickets!” :) Also he has had to reload his phone account, which I still don’t know how to let others add to it – maybe I’ll get a chance to look into that sometime soon. And, he said he wants Campbell’s Clam Chowder in the drinkable cup – for days when the cafeteria food just doesn’t make the grade. I send him junk on a fairly regular basis. Postage is the same as domestic mail because he is at an APO address. The flat rate priority boxes are my favorites because you can mail a ton of stuff (up to 70 pounds!) for one price - $8.95. I would love for him to keep getting lots of mail even just to know that people are thinking about him, so if you get a chance, send him a quick hello – just a regular 41-cent stamp will do it! I was very proud when he told me after he’d been there a week or so that the folks he worked with said to him “Man, someone must really love you, you get mail all the time!” Please continue also to pray for his safety.
Cpt. Billy Van Beveren
332 AEW EMDG/OR
APO AE 09315-9997
billyvanbeveren@yahoo.com
I hope this summer finds you relaxing and having some family fun. Thanks for checking in on us!
Thursday, June 21, 2007 10:55 AM CDT
Having a blast in Maine at Camp Sunshine with 31 families who have experienced retinoblastoma! Wish you were here! We'll go home tomorrow very late and I hope to update next week! Did I mention we're having a BLAST!!!!!?
Check out the camp at the link below -- a fabulous cause if you are looking for a charity to support!
Wednesday, June 13, 2007 0:51 AM CDT
Hi there. Just a quick message to say that Leah did AWESOME at her MRI last week and results were good. Please keep Billy in your prayers and us too as we head off this weekend to Camp Sunshine in Maine. I will update when we return. Thanks!
**NEW photos in the photo album**
New links too.
Cpt. Billy Van Beveren
332 AEW EMDG/OR
APO AE 09315-9997
billyvanbeveren@yahoo.com
Wednesday, May 30, 2007 11:20 PM CDT
Hi! Here’s the latest. . .
Billy got to Balad, Iraq, Saturday a week ago (the 19th). He is working in the hospital which is a real blessing because communication to home is great from there and not-so-great from everywhere else on base. He has found a phone program designed for deployed military that charges us only 4 cents a minute which is an incredible rate! We have been able to talk every day and often at length. This is far superior to those not working in the hospital that are limited to 15 minute calls after waiting in line forever. We have also been able to talk via the webcam which is great because the kids and I can SEE him and vice versa. Especially with their age, the visual is important – they love the webcam. As far as the phone cards go, Billy can still use them, but they are more expensive (usually 22-28 cents a minute) and a little more involved to use. I don’t know how to add to his account minutes without passwords and stuff but I am trying to find out for those of you who have asked about sending him phone cards. Other than that, he says he really has most of what he needs. When he called us the other day he was eating Twizzlers and drinking a coke, so he either packed to support his caffeine/candy diet or has found some there. He basically, eats, works, and sleeps. He is working nights. He “lives” in a converted trailer (like a “pods” storage box) with 2 other officers, but that should be down to 1 after today. I think the shower/bathroom is about 100 yds. From his room. His roommate that was on “house arrest” (long story) should be leaving today. He has gotten the chance (knowing Billy, made the chance) to exercise too. He went for a swim in one of Sadaam’s pools (I believe it is the one where the Olympic team trained), and ran on the track they always showed in the stories about the athletes that were killed if they didn’t do well enough. He walks most everywhere on base, although there are busses (vans) that run too. He walks about a mile to work. He wears his Kevlar and helmet and carries a loaded 9mm at all times (well, not at the pool). He says it is hotttttttttt! He also says it is very dirty and nasty and that we are blessed to live in America. In the hospital which is a bunch of tents connected, he wears scrubs and his 9mm. The radar-controlled equipment tracks and shoots down most of the mortar that is lobbed over into the base, but a few get through and they have to call and check in. (This happened while we were on the phone the other day – Billy keeps telling me it’s pretty safe where he is and you just get used to hearing it.) He has GREAT respect for the guys outside the base. He told me of a young soldier that came in the other night, had been 11 months sleeping in a tent, eating MRE’s, “showering” with bottled water, and had no contact with his family at all in the last 3 months. The guy has another week or so before getting a few weeks off and than going out for another 4 months. He was glad to have a few days at the hospital (he was accompanying an insurgent that they had hurt) for the opportunity to have a bed, shower, etc. Billy let him use his phone program to call his wife. How grateful I am, that Billy is able to call us!
The kids and I are doing well. We miss Billy incredibly but are so proud of him. We are staying busy with activities and trips here and there. They finished school today, and we’re looking forward to a fun summer.
Please continue to pray for Billy’s safety and for us as a whole family. Thanks! Happy summer!
Here is Billy's info. again to keep it handy on the front page here:
USAF Cpt. Billy Van Beveren
332 AEW EMDG/OR
APO AE 09315-9997
billyvanbeveren@yahoo.com
Wednesday, May 16, 2007 10:19 PM CDT
***new photos in the photo gallery****
Howdy folks!
Hope this little note finds you doing well. I thought I better get on here and update because it’s an easy way to share info. with everybody.
We have been busy, busy, busy! (That is a theme that runs in our life). Billy was off the past two weeks to spend time with us and get some things done around the house before he left. We didn’t finish all the around the house stuff, but we did enjoy being together. We spent a day at the Incredible Pizza Co. where we ate, played games, rode go-carts and bumper cars, ate, played mini golf, went bowling, ate some more. . . we made a day of it and all 5 of us were beat, but it was sure fun!
Last Friday, we participated in the Relay For Life in Helotes, Texas. Leah walked the survivor lap and it was a very special night. She has been the youngest each time we have participated, and of course everyone makes a fuss over her. This year there were about 5 teenage Miss-this- and-that beauty-queen types that made their appearance there. They came and sought her out after the survivor lap and presented her with a little tiara, took photos with her and asked for hugs. She was pleased with the attention. Survivors are treated to dinner and a t-shirt and some goodies which she enjoyed as well. She got a giant balloon bouquet that looked big enough to carry her away from a lady working the event and then as we were leaving she won the grand prize in the door prize drawing: a teddy bear and dinner for 2 at Johnny Carino’s with appetizer, entrée, and dessert! She was thrilled with the bear and we’re saving the dinner coupon for me and Billy to use when he returns. The older kids also enjoyed the night and got to do fun things like face paint and games. They were very gracious in allowing Leah to get all the special attention of the day.
All 3 kids have joined the neighborhood swim team and are enjoying getting to swim every afternoon. I am enjoying that they are so tired that bedtime comes easier! :)
On Monday we saw Billy to the airport. We were allowed a special pass to accompany him to the gate where we waited until he boarded the plane and it taxied away. It was nice that the kids got to physically see him get on the plane and go, I think, for their understanding, although Leah continues to ask if Daddy will tuck her in or make plans about "when Daddy comes home tomorrow." On Sunday, Billy gave the kids each some special gifts: They all got an air force t-shirt and a photo of just themselves with their dad to put in their bedrooms. Allison got a silver heart-shaped locket with photos of Billy and Alli inside. Noah got a special “dog tag” necklace that has a photo of Billy and Noah etched into it on one side and is engraved with “I love you Noah From Daddy” on the back. Leah got a special “daddy doll” that I made – a little rag doll with Billy’s face on it. It’s hilarious and she loves it. We are adjusting to his absence. . . slowly. As expected, Noah is having the hardest time, but I think after a week or so we’ll get into a groove and things will be okay. I, myself, continue to make little realizations about how much Billy contributes to our family and home! I miss my best friend. I haven’t cried today though, so that’s progress! :) Again, I think once we have a few days to adjust it will get a little easier. Today was a really good day, so maybe we are getting the hang of it. We have talked to him several times since he left. He has been in Virginia until Tuesday night/Wednesday morning, and he called me from Ireland this morning. From there he will make stops in Kuwait and Qatar (or that’s what we believe) before he ends up at Balad (north of Baghdad). He will be there 123 days (or so). The forecast for next Tuesday has a high of 112, so for Billy, the biggest sweater I know, I am sure that will be a challenge. We plan to stay in contact through e-mail, a webcam, and with the use of international calling cards. From what we understand, the communication set-up there is pretty good. You can email him at: billyvanbeveren@yahoo.com for now. He will get another email set up once he arrives, but it’s probably best that we use this one anyhow so that jokes, etc. don’t get him in trouble. His mailing address is:
USAF O-3 Billy Van Beveren
332 AEW EMDG/OR
APO AE 09315-9997
I know that some of you have asked about care packages and since he isn’t really there yet, I don’t know of anything he would really need except for international calling cards. Any of you who have ever talked to Allison via the phone will understand that she’s going to hog up all the minutes! Of course, he is THE original cookie monster and quite a snacker, so I guess something like that might be good too. I believe he will have access to quite a bit over there though, so I am sure he would just appreciate hearing from friends in general. Please don’t be offended if he doesn’t respond to you, at least right away. He’s not real swift at e-mail and from what I understand he will be working practically every waking moment.
Please keep Billy in your prayers that he will be safe and feel loved in a country filled with so much hatred. Please pray for our family that we will adjust to being apart and that the time will pass quickly. I will post more when I know it so check back! I am also posting new photos!
Thursday, April 19, 2007 3:14 PM CDT
****New photos added to the photo page **** (They are kind of big, but you can reduce the size in the lower right corner of the screen and if I make them smaller they get blurry.)
Hi there, strangers! It’s been quite a while! We have been busy bodies around here and good intentions and all; I just haven’t done an update in a while. Thanks for those of you who have kept up and posted messages anyhow! Here’s what we’ve been up to. . .
First and foremost, thanks for your prayers and support of our family and all our medical woes. Leah did very well at her appointment and as of now, we will continue to do office visits instead of EUA’s (general anesthesia in the O.R.) every 4 months! What a milestone!! She was very cooperative and everything looked fine. Her vision acuity has improved a bit since her last exam (part of which is due to her understanding the tests better) and is now 20/30 if I remember correctly. Of course, she will continue to wear the glasses which are simply clear safety glass to protect the good eye. Unfortunately, the follow up to the ENT visit during Spring Break wasn’t quite as exciting. It seems that she has some mild hearing loss. She hears well in the upper and lower ranges, but not as well in the middle. There is a possibility that it is not permanent damage, but for now, we can’t be certain. Two of the 3 chemo drugs she took are known to cause hearing loss. The specialized machine showed deficiencies in the mid ranges, but honestly, the part where she had to participate, she really bombed, and I don’t think she understood very well. (Despite many efforts!) Anyhow, the ENT says we’ll retest again in late summer, and that the loss is not enough to warrant hearing aids, but probably preferential seating (which the vision will already require) when she begins school. Leah will have an MRI of her brain and orbits (which requires sedation) in June and her next eye exam will be in August.
Leah gave us quite a scare back in February – and a new experience – a ride in an ambulance. Seems like since we’ve moved here we haven’t gone much longer than a week or so with everybody well! She woke in the middle of the night with croup, and she was REALLY struggling to breathe. After a few attempts to alleviate the situation, Billy and I agreed to call 911. She and I took a little ride to the hospital where they gave her some epi and a breathing treatment and then she talked my ear off for the next 4 hours that she had to be observed. It didn’t seem to matter to her that it was 2:00-6:00 a.m. She looked at papers pretending to read them (random conversation with herself), and threw in an exclamation of “Almighty God!” here and there as if she were leading a prayer service.
She is really growing. She loves her dance class and will perform in her first recital in June. It ought to be great! She is going to be a flower girl in the wedding of one of our dear friends this month (I’ll post photos) and she will participate in the Survivors Lap at Relay for Life in Alvin in June. Also in June we are going to fly (first air trip for all three kids) to Maine for a week to Camp Sunshine (there’s a link below). There we will join other families who have battled retinoblastoma for a week of fun. We are excited to be with others who have had similar experiences and to meet many online friends we’ve gotten to know over the years. Billy won’t be able to join us, which really stinks, but we know it will still be a great experience.
Noah had his tonsils and adenoids removed and tubes put in his ears on April 2nd. This came after 5 ear infections in 6 months, strep throat, etc. Though uncomfortable for a while, he did very well and is now completely recovered. We were very proud of him and his bravery on surgery day. He had to miss his class field trip and some fun events prior to the Easter holiday in the week that followed, but we’re glad he had it done. He was taking several daily allergy medications and nose spray prior to the surgery (and for the last year or 2) and since has not taken them once – and he is doing awesome – no more problems and no more snoring!
He is playing T-ball with Helotes Little League. He mostly plays first base which he enjoys because he gets a lot of action. He was taking piano and tennis at the beginning of the year as well, but we have dropped those off for now. Our piano teacher had a conflict in her schedule and had to drop us, and with dance 3 times a week, Religious education class, baseball, and tennis, we were busy enough not to rush out and sign up somewhere else! We finished our season of tennis and did not re-enroll for now. Swim team begins at the end of the month, so tennis will not likely be on the schedule any time soon. Noah will be a ring bearer in the wedding I mentioned before – boy, does he look handsome in a tux! (Says the completely non-biased mother)
Allison is happy to be avoiding all the medical stuff, but has dental stuff instead. She has been steadily losing teeth and actually lost one at school yesterday. She got a retainer to correct a cross bite back in January. By February it had worked so well she no longer needs the retainer for now (even though we’re making payments on it until July!) She’ll still need braces, but we’ll have to wait for more permanent teeth for that. She is doing well in dance and will be in a competition this weekend with her clogging class. She too will have recital in June – (the 24th if you are, or want to be, in our area on that day!) She will dance 3 dances: tap, ballet and clogging. She was also involved in tennis and piano, and will do swim team this summer. On Easter we went to Sea World (we have season passes and have gone several times for a few hours at a time) and she rode the Steel Eel – and was quite proud of herself! She’s barely tall enough to get on, and for those of you who don’t know, it is the largest roller coaster in the park and quite a thrill for even an adventurous adult, let alone a 7-year-old! We had a good time. We enjoyed Disney’s Princesses on Ice as a family over the Easter holidays as well. Princess Alli is very excited to be joining her brother and sister as a flower girl in the wedding too (um, hellllooo – fancy dress and center of attention)! I will be sure to post photos of all 3 in their wedding attire.
Billy will be leaving for Balad, Iraq in less than a month. We had been told that he would not go until July, which was nice because he planned to join us in Maine, but should his time get extended at all, it might have left him overseas for the Holidays. A few weeks ago, his schedule was changed back to May. He should be there 4 months. It’s a total bummer that he won’t get to join us in Maine (especially for Mom!), but he should be home for Christmas even if they extend his stay. The Air Force Theater Hospital in Balad is on an air base about 60 km north of Baghdad. (See link below) It’s pretty developed and better housing conditions that Afghanistan, so that’s good. We know it will be a strain on all of us for him to be gone but we are doing well and making lots of plans to stay busy and stay connected. I’ll write more about that later since this is so long. For now, please just keep us all in your prayers. Obviously, we pray for Billy’s safety, but the emotional toll on us and especially on the kids, is also a primary concern.
I will update with photos of the wedding, addresses for Billy in Iraq, and more in a few weeks.
As always, we appreciate your support of our family in prayer and friendship!
Wednesday, April 4, 2007 1:14 AM CDT
All went well, everyone is doing fine. Will update very soon. Thanks.
Friday, March 30, 2007 10:37 AM CDT
Hi friends!
This will be a really short update, but I promise to post again very soon -- it has been my intention for some time but we have been living in fast forward!
In short, I am writing THIS message for a couple of reasons.
On Monday, Leah will have her eye exam. This is a major milestone for us -- we will attempt to do this exam in the doctor's office -- if she is cooperative, that means no more surgical exams with general anesthesia!!! Please pray that she does well and is healthy. Also, on Monday, Noah will be getting tubes put in his ears, having his adenoids and tonsils removed. Please pray for his comfort before, during and after the surgery.
I think this is the longest we have gone between updates - though I have meant to do so for over a month. We've got lots of news around here to share (an ambulance trip for Leah, some fun plans for summer, Billy leaving for Iraq, all kinds of stuff!), so I will post an update asap and share new photos too.
Sunday, December 31, 2006 10:48 AM CST
Happy New Year!
We are certainly in a celebratory mood. Our visit to Houston was quite successful. Leah had tubes put in her ears to hopefully stop frequent ear infections, she had her adenoids removed, and she had a mold made to create a new eye (which we'll go to do the painting and completing next week) and (drum roll, please) her eye exam was all-clear! The optho doctor has told us that we will do the next exam in four months, in THE OFFICE! That is a big step for us! If Leah can cooperate well enough, that will mean that the EUA (exam under anesthesia) will be a thing of the past for her -- and after 25-30 (I've lost count) times under general anesthesia, that's a goal we've longed for!
She was a bit uncomfortable the day of the surgery, but has bounced back in true Leah fashion and has enjoyed the weekend, playing with all those new Christmas things she received.
In other news, we also took Noah to the ENT while in Houston. Both he and Leah have had recurrent ear infections and have had problems with reactive airway disease--the beginnings of asthma. (Though Leah's is a bit worse and she is already taking a daily medication for it -- maybe the adenoid being gone will help with that too.) The ENT feels like Noah should see an allergist and that his issues will likely be alleviated with medicine and/or avoidance of whatever he is allergic to. So, we will go to the allergist and hopefully help him out there.
We appreciate your prayers and wish you a Healthy New Year!
Tuesday, December 26, 2006 5:13 PM CST
Merry Christmas! We hope this finds you and yours enjoying the Christmas season. We had a nice Christmas here in San Antonio and will be in Alvin later this week to celebrate with family there. While we are there, Leah will have her surgery to put tubes in her ears, remove her adenoids, and also to check her eyes and make a mold for a new eye. Please pray for her safety, comfort, and health before, during and after the surgery. Thanks so much!
We wish you a happy and healthy 2007!
p.s. -- there are new photos in the photo album --
Thursday, December 14, 2006 8:44 AM CST
Merry Christmas! It's been quite a while since I updated and though I have just a few moments, I'll try to catch things up to speed. . .
Everyone is doing well and excited about Christmas.
But before that, we'll celebrate Noah's 6th birthday. He is getting too big!! You can see some neat photos of him and his kindergarten class at the link below. He just finished his first t-ball season, which he really enjoyed.
Allison is still dancing, loving it, and keeping up with girls 5 years older than her in her clogging class! She's going to visit an orthodonist next week so we can see about what may be in store for her as her baby teeth are falling out and those big girl teeth are coming in. She is reading on a 3rd grade level and her 1st grade teacher has great things to say about her.
Leah is getting big too. She is taking a ballet and tap class and really enjoys it. It is adorable to watch. Healthwise, she is doing well, although we have now put her on an asthma medicine. She is going to have tubes put in her ears and have her adenoids removed on the 29th. We have pulled-off a mini-miracle and coordinated her eye exam and a mold for a new eye at the same time! So, she'll get "the works." We'll go back to Houston to paint the new eye (hers is getting much too small) in early January.
This week is Radiothon for Texas Children's Hospital. I encourage you to listen to 93Q (92.9 FM in Houston or www.kkbq.com on the web). They do such a wonderful, loving job of bringing awareness and raising money for the cancer center. Leah's story was featured 2 years ago and was replayed again last year, and I just heard it this morning! If you are looking to donate to charity this season, it is certainly a wonderful cause -- and one very dear to our hearts. I am so saddened to tell you that Chelsey, a courageous girl fighting cancer who we have asked you to pray for in the past, lost her fight against her cancer last Saturday. Please pray for her family to find peace and comfort as they deal with the loss of her.
We wish you blessings beyond measure, health, and happiness in this Christmas season!
Saturday, October 21, 2006 3:10 PM CDT
Happy Fall, Y'all!
Just a quick note to say that all is well. Our trip to Houston a few weeks ago produced only good reports! Leah had an MRI of the brain and orbits, an exam under anesthesia, and a doctor visit. We also selected some new glasses for her. All went very well. She was very brave and we were so proud of her! Everything showed no sign of any problems and we've even graduated to the surgery every 4 months instead of every 3! Her eye is getting too small, and unfortunately we didn't realize it in time to coordinate to make a new mold with this surgery, so we will replace it in four months when she is under anesthesia again and we can get a good mold made.
Since we've been back, we've battled all kinds of unpleasant colds, bronchitis, pneumonia, etc. through the whole family, and I am happy to say we've won and are all feeling good again (knock on wood, QUICK!). The kids all got a flu shot (mean, mean Mommy!) yesterday, so we're hoping the wellness will continue.
Noah is enjoying tee ball, Allison is enjoying dance and will begin tennis next week, and Leah will begin dance this week. Both older kids are also going to religion class once a week. We are staying busy getting the kids here and there. Billy is helping to coach for the tee ball team (The Raptors). He will spend this week playing soldier in the woods, sleeping in a tent and eating MRE's. Meanwhile, I'll play supermom.
We are enjoying San Antonio in general and have settled in pretty well. Our house is still not quite unpacked, but we're working on it bit by bit in between the rest of our life. We're making friends and have found a new church family to join. Overall, life is good.
I put a few new photos, some with Leah's new glasses, Alli's recent dance performance at a school festival and Noah playing t-ball in the photo album. Don't forget to check the link to Noah's kindergarten class to see other photos of him too.
The kids have a friend over and they are jumping in our mini-moonwalk in the front room (which has no furniture in it right now), so I feel I better go supervise!
Take care and drop us a line or sign the guestbook (I check it faithfully) when you get a chance!
Monday, October 9, 2006 2:02 PM CDT
Just a quick update to say that everything went fine last week and all the results were good -- everything looks normal. Leah was SO brave and did so well with everything. We were very proud of her. Leah also got a new pair of glasses which I will post a photo of soon. Sorry, I haven't updated sooner. It has been eventful since we've been back, with Leah fighting pneumonia, Alli & Noah fighting a cough and cold and Mommy sick with fever and cough & in bed for a few days as well. I think we're turning the corner on it all and are on the upswing. Thanks for checking in on us.
Sunday, September 24, 2006 3:27 PM CDT
Hi there! It’s been some time since I did an all-out full-family update so here it goes!
We have been moved in to our new home in San Antonio for about 2 months now. Things are going well, but we’re also quite busy. We’re not entirely settled in, but so far, so good. We’re comfortable here. We bought a 5 bedroom, 2 ½ bath house in a new neighborhood up on a hill. It has nice views and a neighborhood pool & park and we have very nice neighbors & lots of kid playmates. Each of the kids has his/her own room and there is a guest room and large game room upstairs. The kids are going to Ott Elementary school maybe a mile from our driveway and Lackland is only about 15 minutes away.
Friday was a very important day for our family! It was the 2nd anniversary of Leah being cancer-free!!! YEA!!! We went to the park, then to the Exchange where everyone got to pick a little present (for Alli some just-for-style look-like-real just-like-she’s-always-wanted glasses, Leah a pink purse with a monkey on it, and Noah a banana-flavored chapstick), then we went out to eat and had a special dessert (courtesy of Chili’s – eat there on 9/25 -- the profits will all go to St. Jude’s Hospital) to commemorate the day.
Leah LOVES our new house. She has from the get-go. On one trip back to Alvin when I was going to get the last few things out of our old house, she refused to go in saying, “I not go this house. I go to my new house!” She is growing like a weed and talking non-stop. She’s still a huge fan of Dora the Explorer, and has now developed a love of the Reader Rabbit Toddler computer game. She is pretty bored while the kids are at school and we’re (I’m) hoping to find her a Mother’s Day Out or a playgroup soon. We’re also considering swimming lessons once I get a little more caught up around here. She is doing well health-wise too. Next week, we’ll go to Houston for testing – Friday an MRI of her brain and orbits, Monday an exam-under-anesthesia, Tuesday an oncologist and ocularist appointment. Please pray for a safe trip, for her comfort and for all good results.
Noah has begun Kindergarten. He is, quite honestly, not thrilled to go in the morning, but has a great time once he’s there and has many friends. He has the MOST magnificent, caring teacher and you’ll find a link to his classroom below. There you can see for yourself how neat his classroom is. You can view photos of him and activities he’s done and even see a video clip of his classmates dancing (he stood next to the teacher the whole time). Click on Class and Internet Projects to check it out. Noah is getting big as well – tall - I think if he hasn’t passed Alli in height yet, he soon will. He is going to play baseball this fall. His submission for the Texas Children’s Cancer Center’s Making a Mark Art Exhibit was chosen as a Blue Ribbon Winner. It should be on their website soon but is not there just yet. He entered a photograph of Leah playing doctor – it is very cute.
Allison is now in 1st grade. She is enjoying school also. She began dancing with a local studio and is doing well. She is taking ballet/tap/jazz and clogging. Her clogging class is quite a challenge. She is one of two 7-year-olds in a class with mostly 10-12-year-old girls. She keeps up pretty well. There are a plethora of extra-curricular activities offered in our area and of course, she wants to do them ALL. Girl scouts, tennis, acting, singing, piano, cheerleading, and the list goes on . . . the jury is still out on which other activities we may add. She was very ill this week and missed the entire week of school. She had some kind of virus that really did a number on her. She wound up dehydrated, losing about 6 pounds in 5 days and we ended up at the hospital on Wednesday, with all her blood levels WAY out of whack. She was really quite pitiful and I am happy to report that she is now on the mend. Also, she lost one of her two front teeth on Thursday and got a visit from the tooth fairy. The other is loose and should fall out just in time to be singing “All I want for Christmas. . .”
I have been busy trying to unpack, chauffeuring kids, taking care of sick kiddos (all 3 have also had ear infections since August), and making lots of annoying “push-1-for-English”-type phone calls. I have been getting all the household things set up, changing addresses, and fighting to get Leah’s insurance issues and vision instruction with the new school district taken care of. (More details on that later.) My dad paid us a visit week before last and I really enjoyed taking a couple of days to just hang out with him.
Billy is settling in to the Air Force and is finally, after weeks of briefings, working in the O.R. Things are going pretty well there and I think for the most part he is comfortable in his new job. He is still on “orientation” for now, so we can’t quite make a judgment just yet on how we like his schedule, etc. He is on a team that is scheduled to deploy to a hospital in Balad, Iraq in May. His deployment should last 4 months. Ironically, we chose Lackland AFB because of its proximity to family and Leah’s medical care, but it is also, we’ve learned, THE “hot spot” sending most of the Air Force support to Iraq. Balad is supposedly one of the “safer” places to be in Iraq (oh, don’t we feel better now). Please pray for all of us in this situation – for Billy’s safety, my sanity, and that the kids cope well. We certainly knew this was a possibility/probability when we went active, but it will be hard for all of us nonetheless.
Well, I think that sums most of it up. (Whew, are you as tired as I am?) I am posting new photos too, so check those out! :0)
But before you go . . . 3 More things:
I haven’t sent out address/phone change cards yet because frankly, I just haven’t gotten around to it. I don’t feel comfortable posting it here, but I will send it soon and if you want it sooner, just let me know and I’ll email it to you. We have free long distance at this house, so maybe we might get the chance to catch up by phone too!
The kids are doing a fundraiser for school. If you feel you just haven’t had enough little kids knocking on your door selling you overpriced items that you don’t really need, please check it out at the link below. We don’t know many people here (that don’t also have kids selling this stuff), and the kids were promised fabulous prizes if they sold x amount of products. You’ll have to use their names, San Antonio, Texas, and Ott Elementary, as the info when you check out. Go ahead, buy something!
Finally, if you are not already saving Box Tops for Education (the little square on Pillsbury, Betty Crocker, General Mills, etc. packages) for someone else, please save them for us! Thanks!
Thanks for caring enough to read till the end! God bless you and yours.
Monday, August 28, 2006 9:18 PM CDT
Hi there! I am writing this from our new home in San Antonio. Asked the other day if we were yet settled in, I honestly replied, "Well, we're in, but I wouldn't say we're exactly quite settled." . . . and that's the truth. We are slowly "getting there." I would love to post all the details but feel almost guilty stealing a few minutes for this simple post because so many other things are waiting for me to get them done. I will eventually share all the happenings here, but for now, just wanted to let you know we have moved, everyone seems happy, the kids have made friends and started school, and we have been blessed with some very nice neighbors. Will post a complete update soon. Thanks for checking in!
Monday, July 10, 2006 1:48 PM CDT
It was our best EUA yet -- Leah did VERY well without any pre-medication and we were leaving the hospital by 10:00! She did eye drops and everything with minimal trauma/crying, so we were very pleased. Everything looks good and she'll go again in 3 months. Because of her genetic situation, the Dr. has decided to keep that schedule a little bit longer which is okay with us because it provides peace of mind everytime we get a clean report. We may go to every 4 months this year but probably won't go to every 6 months until later than we thought. Thanks for your prayers!
Thursday, July 6, 2006 6:08 PM CDT
It's been a long while since an update and lots has happened, so here's what we've been up to the last couple of months. . .
We had an absolutely fabulous time on our cruise! The scenery was beautiful, the excursions were a blast, the shows fantastic, and the food delicious! Alli attended "school at sea" for a few hours on 2 of the days, and Noah did spend one very sick day "cabin-bound," but all in all it was a wonderful, relaxing time. In Montego Bay, Jamaica, we went to an all-inclusive resort with a private (beautiful) beach; water park with fast, fun slides; a pool, food, drinks, etc. Next was Grand Cayman Island. Wow--it is soooooo beautiful there! We went on a catamaran to Stingray City where we swam with the stingrays, each of us kissing one (7 years good luck) and getting a "stingray back rub." We also made two stops to snorkel. It was our favorite port. In Cozumel, we went shopping, Alli got her hair braided, Mom got a henna tattoo (around the ankle) and we went to "Paradise Beach." Billy and the older two tried out the water trampoline, ocean kayak, and climbing iceberg while Leah and I hung out at the beach and played in the water. We made some marvelous memories.
Back to the real world, both kids finished up school in late May, each with a "graduation" ceremony. Alli also received multiple awards for her academic efforts and was named "Most Accomplished" of her class.
June brought much craziness. We had a fun week with the Astros, where we were treated to 2 games in the same week. On Thursday, Billy and a group of Air Force recruits were sworn-in down on the field prior to the game with the Atlanta Braves. It was neat, with some USAF astronauts conducting the ceremony which was broadcast up on the big screen. We had great field level seats along the 1st base line and the 'Stros won! It was lots of fun. Then Saturday, the 5 of us along with Nonna and Papa headed back to Minute Maid Park for Leah's gig with Arnie, "The Peanut Dude." This is something that happens each weekend home game where a featured Sunshine Kid sells peanuts with part of the proceeds going to the Sunshine Kids. First, Arnie took her to the Shed and let us get a shirt for her, then, we watched the game from our 5th row seats down 3rd base line. During the 5th inning they introduced her and put her picture up on the big screen and then she sold peanuts with Arnie for the inning. She got to keep $30 for herself! It was fun, fun, fun!
Next on the agenda would be Allison's dance recital. We ate, breathed, and slept dance as it grew nearer. She was in 4 dances this year with tons of rehearsals. Then there were costume alterations (thanks, Nonna) and on recital day, costume/hair changes and all that. She did a hip-hop dance this year to "Jump On It" that was lots of fun. It was her favorite. Then she did a jazz routine to "Jailhouse Rock" and a clogging routine to "If You're Gonna Play In Texas" and a daddy/daughter dance with Billy to "Centerfield" (with an Astros theme). As always, she stole the show, but that's just one unbiased Mom's opinion. :)
One week later, we co-hosted a 40th anniversary party/dinner/dance for my parents and close to100 friends and family. It was lots of fun.
Last week, Leah got her very first haircut. Just a trim, but her first one nonetheless.
Throughout these other activities, we have been house-hunting (no fun!) and are now trying to close on a new home. It is in a newer neighborhood on the west side of San Antonio not far from Sea World. The house itself is a year old. It is two-story, 2740 sq. ft., with 5 bedrooms, 2.5 bathrooms, and a large game room, so there's plenty of space for guests, which we hope we will have. As soon as everything closes, we'll send our new contact info. so you can visit! Billy's first day with the Air Force is July 26, so we will be moving just prior to that.
Before we do, we plan to spend a week at the beach, possibly do some photos/commercials for the blood center's 2007 campaign, and I suppose we also have to pack at some point.
Leah will have her next EUA (surgical eye exam) on Monday, July 10th at 9:00. Please pray for her comfort, limited anxiety, and good results. We have been playing "doctor" at home this week to try to make things go a little easier. She absolutely screamed and covered both eyes when I suggested that I (as the doctor) give her eye drops on Monday, but is now willingly taking them from me, brother, and sister as well as administering them to whichever doll or person is her "patient." Maybe some of that will carry over?
We'll post a brief update before heading to the beach and let you know how it goes.
An update on Gorata, the 4-year-old little girl with Rb we've asked your prayers for before -- She continues to do better than expected on hospice, though she is now completely blind, paralyzed in both legs and one arm, speaks very little and tires easily. Please continue to pray for her, her family, and all those affected by pediatric cancer.
So that's it update-wise for now. . . I have added a new link, The Snowdrop Foundation, which was recently established by our friend, 93Q's Kevin Kline, after he was inspired by the kiddos at last year's radiothon. Check it out -- Leah's story is featured there. Also, I added lots of photos, (give it a minute to load & you might have to scroll across), so check those out too.
Hope you are having a fun summer!
God Bless!
Wednesday, June 7, 2006 11:27 PM CDT
Hi there! I know I haven't updated in quite a while. Things are ridiculous-busy around here. . . we're looking for a house (please pray we find one), Alli is head-deep in recital practices, etc., and we are gearing up for Vacation Bible School, Kids' College, and all the day-to-day stuff.
We had a BLAST on our cruise (with the possible exception of one day that Noah was very sick with a stomach virus -- but we did get to see where the ship doctor was, so that was exciting!)! I would love to give details and show photos and I hope to do that soon.
For now, though, just know that all is well!
Oh! And for you Astros fans who might just have a ticket. . . at tomorrow night's game my husband and a few others will be sworn-in to the Air Force down on the field prior to the start of the game with dignitaries and a possible fly-over and all kinds of excitement! Then, on Saturday, our Leah will be featured as the "Sunshine Kid of the game." They will put her beautiful face on the big screen and she will be throwing peanuts with "Arnie the Peanut Dude!" Lots of baseball game excitment this week! :)
Take care!
Sunday, April 23, 2006 11:59 PM CDT
Hi there! We have great news to report! We got a call from our geneticist last week to say that our genetics results are in and the news is good for Alli and Noah! The blood tests done on me, Billy, Alli, & Noah show that none of us carries the genetic defect that can cause Rb. That is good – it means that Alli and Noah need not worry about passing Rb to any future children and that they are not any more susceptible to cancers than anyone else. What this means for Leah is that she is what they call “constitutional hereditary” for Rb. She has definitely tested positive for the hereditary form of the disease, but she apparently got it randomly because neither Billy or I have the gene deletion she has. She still has a 45 percent chance to pass Rb to her offspring and an increased (about 40 percent) chance to have other cancers in her leftime. She is simply put, “predisposed” to cancer. We can’t do anything about it except pray and protect her from things like the sun, etc., but it is a relief to know that the other kids do not share her situation and admittedly, it is nice to know that Billy & I didn’t pass Rb to her.
We have been busy as can be, but we’re doing all kinds of fun things. Today we went to a party at the Sunshine Kids which is always a good time. Alli won a first-place ribbon for her science fair project, so we have the regional science fair competition next Saturday. We also leave next weekend for our Caribbean Cruise with stops in Jamaica, Grand Cayman, and Cozumel. We are very much looking forward to it. Alli will have “school at sea” a couple of days to ensure she is not counted absent during the week, and other than that we are just going to play and have fun. We have scheduled a trip to swim with the stingrays in Cayman along with one of her little classmates. She is also preparing for this year’s big dance recital. She will be in a jazz dance, a clogging dance, a hip hop dance and the daddy-daughter dance. Noah’s preschool class has a field trip every week until school gets out, so he’s keeping us busy as well. He has really enjoyed preschool this year. Billy and I are just keeping up with the kiddos and trying to make plans for our move this summer. Like I said, we’re busy as can be, but blessed to be able to participate in so many neat things.
Some other quick news. . .
Alli lost her first two (!) teeth a couple of weeks ago – with a little help from her dentist. A new one grew in behind the baby teeth and her little ones weren’t really ready to vacate the space, so out they came! It was very exciting and the tooth fairy awarded her nicely. (We have also been promised she will eventually need braces.)
The link below for the Kids Courageous Section of the Texas Children’s Hospital website is a newer version of Leah’s story which was recently updated. Check it out! I also added some other new links to a couple of neat stories.
Finally, I added some new photos to the photo page. I only took the time to put up 3. I will try to do better about updating, and add some others soon. I have some really cute ones from the SSK party today and from Easter, but haven’t loaded them from the camera just yet. I am sure we’ll have loads from the cruise as well! I’ll post them when we return.
Take care and thanks for checking in!
p.s. As we begin to search for a new home, please pray that Billy and I can find something nice in an area that is both close to his work and has good schools for our kids. Thanks!
Monday, April 3, 2006 9:47 PM CDT
Leah's EUA went very well today with all good results. Thanks for your prayers. Since the eyes are fully developed by the age of 5, and because the majority of that happens in the first 2 years, Leah's possibilities of something developing in her good eye continue to decrease with her age, which is great!
She did very well prior to the surgery. We had worked out with our sweet anesthesiologist that they would let me give her some versed (makes her very drunk and carefree) in the outer waiting area which is less threatening to her, so that she would be woozy before we did anything -- vitals, eye drops, anything! She took it like a champ -- I was so proud of her -- she did throw up a little bit which we expected, but it was minimal compared to other times, and she kept enough down to do its job.
She was hilarious. Like a little drunken 2-year-old. We did all vital signs and eye drops without tears or screaming. It did take longer for her to wake up, but overall we're very pleased with how things worked out today. She had a couple of green popsicles and we were on our way. She stayed "drunk" for a while, but was in a good mood the rest of the day. We enjoyed dinner out with Grandpa (he was here helping with the older kids getting to school, etc.) and now we're all just ready to collapse!
Thanks so much for your prayers and for the kind words you've sent or posted in the guestbook.
Monday, April 3, 2006 4:54 AM CDT
Just a quick note to ask that you please say a little prayer for Leah this morning. She is scheduled for her EUA at 9:00. We will arrive at the hospital at 7:00 to begin all the pre-surgery stuff that scares her so much. Please pray for her and her anxiety, for her comfort and safety before, during and after the procedure, and of course, for favorable results.
Thursday, March 16, 2006 9:46 PM CST
Hi everybody! Just a quick post to say that things went very well today. Leah’s MRI results were all clean and everything looks good. The rest of us had blood drawn to be sent for what should be our last genetic testing – to determine if any of the rest of us carry the gene mutation. We were very proud of Alli and Noah – they were brave and did a great job! (Thank you Ms. Dana for the numbing cream and wonderful encouragement!)
We are now set for the next EUA on April 3rd.
We are finishing up our Spring Break which has been good and bad. It’s very nice to have everyone on a leisurely schedule, sleep in, etc. However, the kiddos have been a bit under the weather – mostly the girls. Leah has run a fever since Monday – high, 103-104, even 104.6! but consistently over 102. We’re quite frustrated with it as you can imagine. We are going back to the doctor again tomorrow to see if we can’t do something! Leah told me yesterday, “I whiney, Mama. I grumpy.” And she was! Poor kid. Hopefully we’ll get her some relief soon.
One last thing, okay two really. . .
1. I forgot on the last post to clarify that the move to San Antonio will not occur until late July. Also, the kids took the news quite well.
2. I am always mindful of our blessings in regard to how Leah is doing, but never more so than the days we visit TCH. Please remember all the kids and their families affected with cancer, especially Chelsey who is still hospitalized, and Gorata, who will be four on Friday -- she has sadly had a relapse of Rb after a year in remission, and her cancer is no longer treatable.
Take care!
Saturday, March 4, 2006 1:38 PM CST
Hi there! I am sorry I didn't update any sooner, but this week flew by before I even realized it! Monday went quite well with Leah's M.R.I. and we should receive the results with our office visit on the 16th. On that day we will also do the rest of the genetic testing with Billy & I and both older kids submitting a blood sample to be analyzed. It should be high drama when they realize that they have to do so! The MRI yielded a few cute stories from my Leah. As she woke up, she immediately noticed that Daddy was home and we were about to leave with her still in her pajamas. At that point, she said "Me no want no eye drops!" She gets the eye drops at her EUA's and they sting, and obviously, she put things together and figured she was in for an EUA. So we reassured that there'd be no eye drops and off we went. When we arrived at the hospital the first thing we had to do was get her IV in place. We did that in the cancer center because they are so skilled and we've always found them to be much better at that kind of thing. At first she didn't mind when we walked into "BandAid Junction" (the place where the finger pokes and IV's are done) because we often visit Veronica, one of our favorite ladies at the cancer center. When she realized Veronica wasn't in there and we headed toward Cheryl, the absolute best IV giver in the universe, Leah started crying and saying "Me no want that!" A little amusement from Daddy and the ladies of the cancer center, and a lot of talent from Cheryl, and we were done. The I.V. was in place, wrapped in a pretty pink band, and her Dolly even got a pink bandage to match! So off we go to Diagnostic Imaging. Just as they took us back, Leah says to me "I hungee Mommy!" Poor kid, I was too, but fortunately she was about to go to sleep. Billy said, "I am hungry too Leah!" to which she enthusiastically replied, "AMEN, Brother!" So now we're in the back near the MRI where we are greetd by the anesthesiologists. Leah takes one look at the situation, sizes up the scene, and starts crying and yelling, "Me no want no holy smokes! Me no want no holy smokes!" (She is used to the EUA where they take her to the back and put a mask with anesthesia gas, i.e. "smoke" on her face.) Everyone got quite a kick out of it, and we all reassured her she didn't have to get any holy smokes! I held her while a clever anesthesiolgist hooked into her IV and in a flash she was asleep. An hour and a half later she was done and woke up just fine in a good mood, although she was quite wobbly for the rest of the afternoon. All in all, it was a pretty smooth morning. Please continue to pray for good results on the MRI and the genetic testing. I will update on those as soon as I get them myself. And keep praying for all the kids and families dealing with cancer -- especially Chelsey who came through her 28 (yes, 28!) hour surgery and is now recovering little by little.
Another quick story -- Leah fell out of the Suburban a few weeks ago when it was parked in the garage --long story-- and she landed on her forehead (it was really pretty!). So, as I took her to the doctor and she kept telling me "hurt my head!" I got pulled over for speeding, going 38 mph, about a block from the dr. office. When asked, "Do you have a medical emergency?" I began to cry as I explained how my kid had fallen on her head, and the officer told me "luckily your kid has a big lump on her head" so he'd give me a warning. Then we got to the doctor's office and somehow managed to spill half a sprite all over Leah -- not her best day! Anyway, she was fine although the doctor who saw her (of course it was our doctor's day off) was, I think, a bit panicked by the fact that her pupils were not equal before I told him she had a prosthetic eye! HA! Anyway, since she still has a small lump on her head, they said they'd check that out too as long as they were taking pictures -- what a deal! :)
Finally, I wanted to share a little good news. I mentioned a while back that this year promises big changes for our family. Although I didn't mean to be mysterious, apparently it caused quite the curiosity! I just wanted to have a little more information before I shared. Billy has been accepted to the Air Force. He will sign soon to go active duty and our family will be moving to the San Antonio area, as he will be stationed at Lackland. This is a decision we have put great thought into. Billy will earn 20-30 thousand dollars a year more than he does in the same position as a civilian. Also, he should have less than 10 years before he can retire. (He has 17 years now, 8 of which are active.) The thought of guaranteed medical insurance for the both of us and for the kids, especially Leah, through college is great reassurance to us. The possibility also exists that while on active duty, Billy may be able to pursue the dream of becoming a nurse anesthesist. The plan is that once he retires (at or around age 45), he'll find a per diem job and work a few days a week (because we won't have to worry about benefits). The Air Force has shorter deployments (only 4 months at a time vs the Army's 1-2 years) and relocating every 3-4 years is optional for officers. Looking at the big picture, we just think it's too good to pass up. We plan to tell the kids today and are hoping they will be excited. It's scary to leave what we know and be away from my family, but we are moving closer to many of Billy's friends and family. We are little scared (okay, that's mostly me) and excited. Please pray that things will go smoothly and that the kids will just roll with it and adapt well to the change.
This is long, so I'll quit for now. Take care and be in touch!
Tuesday, February 21, 2006 9:21 AM CST
HOWDY!
Hope this update finds you doing well. We are approaching Leah's M.R.I. and wanted to post a message to say hello and also ask for your prayers. We've been busy since I last updated (we're always busy -- that just comes along with 3 active kids!), but we've been having fun all along the way. Billy spent 2 weeks with the Army in San Antonio for his yearly AT at the end of January. The kids and I went to visit him one weekend. It was nice to be away from all household responsibilities and just relax as a family. We spent some time at the park, did some shopping and just hung out. Back at home, Noah and I went to see the Berenstein Bears stage performance -- just a date with Mom -- and that was fun. All the restaurants in Galveston to choose from and guess where we ate -- Noah's choice of course -- you guessed it -- McDonald's (or Mickey Donald's as it is known in our family). It was a fun little outing that was a payback of sorts for my taking just Alli to see Lord of the Dance. When Billy returned he began working 8-hr. shifts instead of the 10's he was working before. It has been a change we all enjoy. We don't miss the day off because we usually had something scheduled anyhow, and it is so nice to have him home early enough in the afternoon to spend a little time together before it's time to eat and get ready for bedtime. He gets home around 4 now instead of 6. We, along with our extended family including Grandpa from San Antonio, had a great time at our church-sponsored Valentine Dinner/Dance on the 11th. The kids love to dance as do we, so it was the perfect place for family fun and we stayed late and shut the place down. The following day we went to see Dora the Explorer's Pirate Adventure on stage which was a Christmas gift from Grandpa. The kids LOVE, LOVE, LOVED it -- especially my Dora fanatic, Leah. It was great fun to see her so excited about something. She had a blast and cried when it ended. It was a fun weekend. Then last weekend the older kiddos did a 1K fun run. (Leah and I stayed home because she had ear infections and the weather was horrible.) They enjoyed it in spite of the cold, rainy weather and were most pleased to get a medal. Alli is gearing up for the dance recital, learning her routines. She will be in 4 numbers this year: a jazz routine to "Jailhouse Rock," a clogging routine to "If You're Going to Play in Texas," the Daddy/Daughter dance to "Centerfield" and "Take Me Out to the Ballgame" (Astros theme), and a hip hop dance that we have yet to learn. Should be a great show. :)
Now that you're all caught up on Van Beveren family activities, I'd like to ask for your prayers for us this coming Monday, the 27th when Leah will have her M.R.I. This is a rescheduled appt. from the cancelled one last month and is now about 2 months overdue. It is a routine preventative test to monitor both her eyes and a spot on the brain that can be affected by retinoblastoma. It will require sedation and since she no longer has her port, that means an I.V. Please pray for her comfort before, during and after the procedure (it wouldn't be a big deal if she weren't so scared of all things medical) and for only favorable results. We still have yet to do the genetic testing on the rest of us -- it was scheduled with the original MRI and now we're just trying to find a day we can all go without anyone having to miss school. We should do that soon, maybe during Spring Break. Her next EUA is scheduled for April 10th.
We appreciate your prayers for us and please remember all the kids and families affected with cancer especially Chelsey--who I have mentioned before--as she is having a major surgery today.
Thanks!
Tuesday, January 17, 2006 2:18 PM CST
WARNING: The report you are about to read is long, but an overdue update on everyone.
Hi there! Well, I’d love to give you great results from Leah’s MRI, and tell you that the older kids did great with their genetic testing, but the truth is we haven’t done either! It was a real Friday the 13th! About 1:30 a.m. Leah began to cough and have a terrible time breathing – croup -- so we took her into the bathroom and steamed it up until she was doing better and put her into bed with us. At 3:30 we had a repeat episode that was even worse – when Billy gets scared, I know I should PANIC! We spoke to a doctor and decided we needed to get her to the emergency room. We wanted to make sure that she went to Texas Children’s so we decided not to call an ambulance (I'm telling you, she was really struggling!) but to take her ourselves. We did the steam trick again while we got dressed and my mom came over to stay with the other kids and then we were off to TCH. By the time we got there, she was much improved and breathing easily, so instead of subjecting her to pokes and prodding, we decided to wait and take her to her pediatrician. We went home and slept a bit, then did just that. She was diagnosed with croup and we got some medicine and with the exception of a little lingering runny nose and cough she is doing just dandy. It sure screwed up our plan though! :) Billy has few days off as he is relatively new in his job and that wasted one. ARGGG! But, of course we wouldn’t want to risk Leah’s safety by putting her under anesthesia when she has respiratory issues (the doctors wouldn’t allow it anyway). So, . . . we’ll wait for another day that Alli is out of school and get the older kids tested, and we have rescheduled Leah for February 27th – which means her MRI is now 2 months behind schedule. :( Oh well, that’s how it goes. . .
So now for an update on everything else. . . we had a great but busy holiday season. We had a blast at the Sunshine Kids holiday party where we got to see and visit with Craig Biggio again. That’s always a treat. We were privileged to participate in the 93Q radiothon that benefited the cancer center again as well. It was awesome – those folks are just good people, period. Very nice and extremely committed to helping out – and we are blessed to call them friends! They used Leah’s song quite a bit and I got to speak on-air on 2 occasions. They raised $960,000!! It’s such a wonderful event! I hope you got to listen a bit. December also brought some sadness, as two little Rb boys we know of were called to be angels. Please pray for the families of 2-yr.-olds Crew and Mitchel. Both lost the fight on December 7th.
Alli is still enjoying school. She was selected student of the month in December and also got to be “St. Lucia” for her class for a program at mass. That was especially neat because she is the saint for eye problems and blindness – an irony not lost on us. Alli is dancing twice a week, tap/ballet/jazz & clogging. She still very much loves it! She and I recently got to go see "Lord of the Dance" and it was phenomenal!! She also goes to “Kids’ Club” – an afterschool activity at the church across the street on Wednesdays--and she really likes that. She is, as always, the social butterfly and type-A competitive perfectionist.
Noah started going to preschool the week after Thanksgiving. He was bored without Alli at home and we thought he could use the social “practice” being away from home. He goes Mon-Wed 8:30-11:30 at the church across the street from our house and I am so pleased to say he LOVES it! Yea, Noah for venturing out! He recently celebrated his 5th birthday with a swimming party (indoor of course) and is growing like a weed. He is loud, messy, all-boy, a “bull in a china closet” and quite loveable all at once!
Leah is much fun these days. She is a huge fan of Dora, tap shoes and wearing her bathing “soup” (suit). She taps around the house from the moment she wakes till the end of the day. I have, however taken her out of dance class for now. Although she loves to dance at home, she cried a lot at class unless I was with her. The class was at 6 p.m., a horrible time for 2-year-olds. We will try again next year. She is speaking in full sentences and has become quite the communicator. She is so funny. She is sleeping in the big bed full-time and we have begun to do a little potty training. She is growing too! And her hair has gotten long! She has quite a temper that we’re working on, but she is lots of fun, and a whole lotta cute. She got a new eye in December, but we’re again working on a new one because it had a few things we weren’t happy with. It looks pretty good, but when it’s your kid, you see all the little things. She should have her new, new one at the end of this month. It does fit well and I am thrilled to say that she is keeping it in for days, even a week at a time! When she does take it out, I can tell her to put it back in and she does. Now that’s talent! :)
Billy and I are just trying to stay sane in the crazy routine we call life. He is still working at UTMB in the O.R. I am shuttling kids here and there and juggling the household responsibilities. I am also working on some cancer awareness projects that are neat. Leah’s story will be featured in a world-wide book about Rb – about 6 stories for each continent and Leah is one for North America. Also, the direct mail piece to benefit the cancer center (that featured Leah) went out in December and it was neat that several friends and even we received it in the mail! I didn’t realize it at first – I’m glad it didn’t get tossed! She is also now featured permanently on the Kids Courageous section of the TCH website. The story and photo are a little old, but will be updated soon. The link is below. We are excited to be planning a 7-day Caribbean cruise with the kids in late April. Alli’s school is sponsoring the event as a fundraiser and the kids that go will have school-at-sea for some of the time we are there so they won’t be counted absent. It’s a neat opportunity and should be a wonderful time. It’s also a nice early-10th anniversary gift to ourselves. The new year also promises some big changes and excitement for us (NO, I am not pregnant!). . . more details on that news later.
We hope this finds you happy and healthy. Please continue to keep Leah and all the kids/families affected by childhood cancer in your prayers, especially for Chelsey who we’ve “met” (know of) through a special friend. She is fighting undifferentiated sarcoma, a cancer that is very rare and difficult to beat. She’s giving it her all, and with prayer, some good doctors, and a great attitude, she is going to be the exception!
Take care and keep in touch when you can!
Tuesday, January 3, 2006 11:13 AM CST
Good morning! It really is! This morning’s EUA went very well. Leah’s eyes look good and we were done and home by 10:00!! That may be a new record. She did pretty well this morning. We took along our new portable DVD player that the kids got for Christmas and with the help of a new Dora DVD, we kept her distracted for a while. She still cried and continued to say “GO BYE BYE!” off and on from the minute we went back to the pre-op, but overall several things really worked in our favor. We got our favorite pre-op technician who is very good with her and was able to get her weight, oxygen saturation, and temperature with limiting fussing. He opted to forego the blood pressure which was a VERY good decision! Also, she always has to have 3 sets of eye drops 3 times each (9 total since it’s only one eye now) and they have always been a huge hurdle – they sting and she HATES them – fighting each and every one! I always administer them myself because it seems to work better that way. Well, this morning we learned that because her eyes are blue we really only need to use 2 types (not the one that stings the worst) and only do them twice! We cut the drops from 9 to 4 which was GREAT!! Our anesthesiologist was apparently extremely busy and up all last night and was not able to be there this morning, but she spoke to the doctor du jour and we really liked him. He followed closely what she has done that worked in the past and Leah woke up very smoothly and was REALLY chilled out. That was nice. In addition, we discussed options for pre-medication – in the past we have given Leah versed to “space her out” before the surgery – she becomes very loopy and carefree – the problem is that she hates the medicine and we struggle to get her to take it – it’s really nasty and she usually throws up immediately after taking it which means she doesn’t get the full effect (or any at all) and Billy or I are wet and yucky. We have in the past 5 or 6 surgeries opted to let her yell a bit because it just didn’t seem worth it – she could yell the short time that it takes for them to get her to sleep, we don’t have to fight to get her to swallow the versed and we don’t get thrown up on. Today we got a prescription for valium that we can give her at home before the next EUA (in three months), so that will be good. She is much more cooperative in the safety of her own home, so we’ll give that a try and see if it helps calm the fears next time. There was also an anesthesiologist fellow on her case today and we were impressed with him. He took a minute to build a good rapport with Leah and she really took to him (I have to admit he was very likeable.) When we leave her at the double doors that lead to surgery, often the nurse has to pry her off of me, but today, albeit crying “I want to see Daddy” she willingly went to the anesthesiologist fellow’s arms and he told us she even stopped crying once they got back to the room. That’s nice.
Oh, one more good thing -- She didn’t even try to pull out the IV in post-op! She watched Dora all the way home, had some yogurt and a cereal bar and is watching some more Dora now and playing around the house in her tap shoes. So. . . all in all a good day. Grandpa got both older kiddos to school with no problems and all is well. We’ll go next Friday for Leah’s bi-annual MRI (to check her brain and orbits for anything that shouldn’t be there) and will also have all 4 other family members genetically tested. That should be a challenging day with Leah getting an IV while awake and both other kids giving a blood sample (HIGH drama!). You did such a good job with prayers for today, I’d like to recruit you for that day and those test results as well! Thanks so much for your prayers. I am going to pick up Noah from preschool and see if we can all take a nap! I will update on the whole crew and add photos soon. Take care!
Monday, January 2, 2006 2:02 PM CST
Dear Friends and Family,
I hope this little note finds you enjoying a fresh start to a Happy New Year. I would like to ask that you please say a little prayer for Leah. Tomorrow morning she will have her Exam Under Anesthesia (regularly scheduled, to check her eyes). We are scheduled to arrive at 6:30 and her surgery is scheduled for 8:15. Please pray that Leah’s EUA will have only good results, that her eye and socket are both clear of anything unexpected, and that Leah will be comfortable before, during, and after the procedure. As she gets older, it is definitely getting harder on her because fear is now a factor, and anesthesia, IV’s, etc. are all so unsettling to her. We are so pleased that our much beloved anesthesiologist should be there (we always request her) because the wake-up is usually smooth with her “recipe.” (She must like us a little too, because she is staying to do Leah’s surgery after being on duty all night unless “she gets killed”!) She has been there for most of Leah’s surgeries since she was 3 months old and it gives us great comfort to know she’s there. Please pray too for her other nurses and doctors – we are so thankful for them, their wisdom and their skill. I will update with results tomorrow night and give some updates on the other Van Beverens along with photos soon. And. . . as long as I ’ve already got you here and you’re already at it, please pray that my other 2 kiddos have a good first morning back to the school routine (with the help of their Grandpa Van B since we will be with Leah.) As always, thanks so much for your support!
Wednesday, December 14, 2005 0:37 AM CST
Hey there! Things are quite busy in the Van Beveren household with the holiday hustle and bustle. . . an in-depth update and photos are on their way soon, but we needed to send a quick "heads up" that The Cure Kids Cancer Radiothon begins Thursday and we wanted you to know! Leah's story will be featured as a "repeat" and then we will do a live update as well. We are scheduled to be on air Thursday morning (and we'll be back up there on Saturday too, but I know we'll be on air Thursday because they wanted us during one of the busier days). We told them we'd be there between 9-10, so we should be on sometime around then. You can listen on-line if you are not local, but for those of you in the Houston area, it's on 92.9 FM. This radiothon is really a special event, so give it a listen. . . Thursday and Friday 5 am - 7 pm and Saturday 7 am - 2 pm. Click the link below for more information and to listen.
Lots of other things are happening around our house and I'll post about them soon. Until then, Merry Christmas!
Thursday, November 24, 2005 10:48 AM CST
Happy Thanksgiving!!!
I hope this holiday finds you enjoying time with family and friends.
We are so blessed and thankful.
We are grateful for blessings big and small.
We are thankful for the many men and women who don't get to spend the holiday with family because they are serving our country. Please remember their sacrifice; remember them and their families in prayer.
We are thankful to live in a country where medical treatment is readily available to children like our Leah in a comfortable environment. Please pray for the children who are not so fortunate. (read the account at the link below and you'll see what I mean.)
We are thankful for supportive friends and family like you.
Have a wonderful day!
Sunday, November 6, 2005 10:36 PM CST
Sunday, November 6, 2005 10:36 PM CST
Sunday, November 6, 2005 10:36 PM CST
Thursday, October 13, 2005 9:48 PM CDT
Just a quick note to say that all went well with Leah's exam today. Her eyes look good. More details to follow on a day we haven't been awake since 4 a.m.! Thanks for checking on us.
Tuesday, October 4, 2005 10:37 PM CDT
Hi there. I am just dropping in to update that Leah is feeling much better and we're scheduled for EUA on the 13th and Genetics results on the 20th. I inadvertently spoke with a person from the lab that did her genetics and he told me that my "daughter's results were conclusive and very clear". . . wow, finally we're going to learn something! That makes me relieved and nervous at the same time. I am glad that we will get final answers, but scared what they might be. We have to meet with the genetics doctors here to get the results because they are the ones that ordered the testing and they like to review it and explain it. It's been a really crazy life around here lately, and I still intend to update photos. . . be patient with me.
Take care and thanks for your prayers on our current issues!
Thursday, September 29, 2005 11:24 PM CDT
Hi there -- Just a quick note for those who are dropping in to check on Leah's EUA that was scheduled for today.
She did not have the EUA because she has pnuemonia and anesthesia does not partner well with it! She is doing well and has been on medication since Monday. It seems as though she is getting better each day, and she is happy and playing as normal. Because the EUA was cancelled, the genetics appt. was also postponed. New date for EUA is Oct. 13 and new date for genetics results is October 20. I will post the updates as soon as possible afterward.
Meanwhile, everything else is fine in our little world. We evacuated last week in an effort to escape Hurricane Rita, and all is well. We drove 10 hours to a destination that is usually about 3 - 3 1/2 hours drive, but I suppose from what I hear, that wasn't so bad. (It felt pretty awful at the time though, if I tell the truth.) It was a real experience! (Not one I care to repeat.) All's well that end well, though.
While we were gone, we celebrated Leah's one-year anniversary of being cancer-free! Wow -- does that feel good -- YEA LEAH!!!!
I will make an effort to post new photos soon -- really, I promise.
Take care!
Sunday, September 18, 2005 1:06 PM CDT
Well, I finally got around to an update, and boy is it long! Things are busy as always and ever-changing in our household.
The girls both celebrated birthdays in August. Leah turned 2 on the 5th and Alli turned 6 on the 24th. They had a little mermaid party with swimming and lots of fun. Then Alli began kindergarten in August. She attends Our Lady of Lourdes Catholic School in Hitchcock and really seems to enjoy it. It is a little bit of a drive, but hasn’t been bad because she is captive on the way home and I have 20 minutes to grill her and get her to tell me about her day. She now prefers the much more grown up name of Allison, which is what she chooses to be called at school. She is reading everything in sight and doing quite well. She began her 5th year of dance last week. She will be taking tap & ballet and clogging.
Leah has also started dance – just tap. Her teacher is in for a real challenge! She continues to love being in the water and has been taking some swimming lessons from her Aunt Bridget. We will possibly enroll her in year-round lessons when it becomes too cool to swim outside. Leah continues to amuse and frustrate us. She marches to the beat of her own drum, and doesn't particularly care if it's what you want her to do or not. She is definitely hitting the “two” stage of “Leah do it!” She is talking up a storm and repeating like a parrot. She loves to go places and actually cries when we turn on to our street when we return from anywhere – and says “bye, bye again!” Apparently, we’re not quite doing an adequate job of entertaining her here!
Noah is taking a break from gymnastics for now. He misses Alli as his primary playmate during the day, but it has given him the chance to “be in charge” for a while. He still loves to be outdoors and play baseball, soccer,run, etc. He watched a karate class and decided he wasn’t really interested in that, so for now, since he is most comfortable being at home with his family, that’s mostly what he’s doing.
Billy has started a new job as of September 12th. He has returned to nursing and is working at UTMB Galveston in the O.R. He really seems to enjoy it so far. The sales job was great in that he had quite a bit of flexibility and lots of days he’d get off early, but it was very unpredictable and we were not able to plan anything. We never knew if he would be working until the moment they needed him. The only opportunity for growth was for him to become a full sales rep and that requires more family time than he (or I) was willing to spare. The money is about the same and possibly better, there is room for growth, and more stability for future, and he seems very happy, so that’s all good. I do miss him leaving late, coming in early, being off for the day, etc., but, the set schedule is nice for planning. And, Billy’s big news is that . . . HE EARNED HIS BACHELOR’S DEGREE in August. I am sooooo proud of him. It was many years in the making, with many late nights, and lots of child interruptions, but he kept at it and he did it! He didn’t want to walk or recognize it with a celebration, so I have to toot the horn for him, but I really am so proud of him (and happy it’s done!)
I am driving kids around from here to there, working on Halloween costumes (a genie, Luke Skywalker, and Princess Leia), paying bills, supervising homework and playtime, and all the other fun things moms do. Life is busy, but blessed.
We are celebrating Leah’s anniversary of ONE YEAR CANCER FREE on this Thursday, September 22. It’s a very special day for us and we hope to celebrate many more. The local paper ran an article about her for Childhood Cancer Awareness Month, with a large color photo on the front page. It was really neat. She is also helping Texas Children’s Hospital in their fundraising campaign by being a “poster child” of sorts for their current mail-out. I have a digital copy that I will try to find a way to post, but e-mail me if you’d like to see it or the newspaper and I will send a copy. Leah will have her next exam under anesthesia on Sept. 29th. Hopefully a clear report there will keep us away from the hospital until next year! Also on that day, we will meet again for some hopefully final genetic conclusions. We know the odds are not in our favor, but are hoping against hope that her Rb is not hereditary. On that day we will also be molding for a new eye – we have been using her original one and she is outgrowing it, so a new one will be made from the mold that is taken. Maybe one day she will leave it alone and not take it out several times a day -- hopefully before she gets old enough to start school! I will try to post an update on the 29th or shortly thereafter with the results of everything (and add some new photos of everybody – only the main page photo is new).
We get very nervous at exam time. Please pray for a clear exam, for Leah's fear and discomfort to be minimal and favorable genetic results. Thanks and God bless!
Sunday, August 28, 2005 9:21 PM CDT
Just a note to say all is well and I am sorry for the lack of update lately. Alli has begun school and we are still adjusting to the new routine. Add in both girls' birthdays, Billy pursuing a new job, out-of-town company and maintaining the day-to-day, and we're just plum crazy around here! We do have some new and very cute photos to share -- soon -- along with an update on everyone -- promise! Thanks for checking in!
Wednesday, July 27, 2005 8:31 PM CDT
Hi there! Just a quick note to say that everything is going great. Leah had a follow-up appointment with her occuloplastic surgeon today and he says that she looks great and that her tissue should be well-grown into her new implant by now. We'll have one last check back with him in 6 months. Her next EUA is scheduled for October 3, so we're feeling great! We had her glasses adjusted today and think we'll be able to get several more months out of them before we need to get new ones, so that's good. She turns 2 next Friday and we'll see the regular doctor for a checkup, and hopefully just hang out till October! She is hilarious these days. Her vocabulary continues to expand and she is talking all the time. It's lots of fun. I can't believe she's going to be two! In some ways, it seems like it's gone by so fast, in other ways it seems like she ought to be 10 by now! (I am glad it's only 2 though.) Everybody else is doing great and trying to take advantage of our last days of summer. Take care!
Thursday, July 14, 2005 10:19 PM CDT
Hi there! Sorry for the tardiness of this report; I had intended to do it on Monday, but things just got busy. Billy’s dad was with us until around 9 Monday night and then we just crashed. Those EUA days of getting up at 4 are brutal! I honestly don’t remember what we did Tuesday, probably just recovered, then last night we got together with some friends we haven’t seen in way too long and stayed out late. So, here I am today. If you only read when I send an e-mail, you may want to check the journal history for what’s happened in between because I do try to update regularly even when I don’t send out an e-mail.
Here’s what happened on Monday. . . Leah’s right eye is still clear with no signs of anything unusual – Yea God! Her left socket also looks good with nothing that is of concern to Dr. Paysse. Double Yea! -- We have been concerned about a spot in the socket that we thought was another hole, and although we haven’t had all the “goop” like last time, it was a big worry for both Billy and me. Dr. Paysse says it is NOT a hole, just a little fold in the tissue, so that’s GREAT! Leah was her typical upset self at all the things prior to surgery, dilation drops, blood pressure, weight, etc., and cried, but we opted not to give her the sedative we have in the past. She hates it, and we usually have to fight her to take it after which she usually throws up on one of us and herself, and so sometimes, she doesn’t even get all of it. She cried as the anesthesiologist carried her off to the back singing “The Wheels on the Bus.” In recovery, her face was very swollen (she had been given quite a bit of fluid too) and she had bitten her lip at some point – it grew absolutely huge! She didn’t even look like herself! I have to admit, it was a little unsettling for me, and it didn’t help that since she didn’t have the medication, she was more awake after surgery and was inconsolable for quite some time. I don’t know which is better, to fight her before and have her throwing up or to have her so upset. We’ve used the versed for probably the last 15 surgeries or so, and we just were thinking that it’s just as easy to have her upset until they get the mask on her as it is to fight her with the medicine that gags her. I didn’t think about it helping after the fact. I am not sure what we’ll do next time, but thankfully we don’t have to worry about it for another 3 months. Her next EUA will be in October.
After the EUA we went upstairs to meet with the geneticist where we got our testing results. Remember that we’ve been unsuccessful up until this time at gaining results that would clarify if Leah’s Rb is the hereditary form or just sporadic. Obviously, we want it be sporadic not only for future generations of Leah’s offspring, but for Leah – the hereditary form carries with it a probability of future secondary cancers (not recurrence of Rb, but separate additional cancers). So, survey says. . . the results are still not finalized! We do have good news though. Although we cannot say that Leah for sure has the sporadic type, the lab did find the mutation in her gene. The problem is that they want to find it in both copies of the gene and because the DNA was not of great quality (because we had tried to destroy the tumor with chemo) and they did not have a “sufficient amount” (very frustrating – this has something to do with the fact that they couldn’t “find” her tumor) they have only found it in one copy. Sorry, this genetics stuff is so confusing for me to understand let alone, try to explain it! Anyhow, they are now going to thoroughly retest her blood as though it’s never been done and try to pick up anything that they can in that way. I honestly believe we’ll never have an absolute yes or no unless it is negative, so I guess we’ll just take what we’ve got and be happy. Even if more advanced testing comes out in the future, there’s no more tumor to test, so we’ll just have to be happy with what we’ve got. The longer she goes with only one eye affected, the more sure we are with the results. They have told us that they believe she has less than 15 percent chance to have the hereditary form, and we think that’s great! Her case history has more than one trait of the hereditary type, so we’re happy that they think she’s an exception!
Finally, we attended the first Rb Family Support Meeting on Monday afternoon. It was nice to visit and meet some of the other families who truly understand our experiences. Leah made friends with a precious little girl who is 3. She had her 2nd enucleation this year after a long fight. She is a real doll and an incredible kid. Her blindness doesn’t seem to get in her way at all. She was a joy to be around.
In other news, we’ve been enjoying our summer. Last week we were able to go to the Astros game with the Sunshine Kids and we got to go into the locker room before the game for a “meet and greet.” The ‘stros lost to the Padres, but we had a blast – all 5 of us!! Leah was particularly fond of “Junction Jack” the jackrabbit mascot and continued to chase him around yelling, “Bunny!” I have posted new photos in the photo album of our fun outing. Leah continues to add to her vocabulary and “talents.” She is outgrowing her first set of glasses and will probably get new ones in the fall when she gets her next new eye. I lost the appeal to the insurance to pay for the first eye at a higher rate – ARGG -- can’t say I didn’t try! She is doing better about keeping the eye in for longer amounts of time. We did find it in the floor at Academy on a recent shopping trip though! Noah is getting taller by the minute. He and Alli are going to Vacation Bible School this week and having a great time. Alli will start school on August 10th, and trying to fit in all the things we want to do before we have to be on a daily schedule is leaving us feeling pretty “scheduled!” Billy is diligently working on his last 2 classes to complete his bachelor’s degree. He will graduate in August and I am SO proud of him. He has (we have) worked long and hard, little by little, forever, and he hasn’t given up despite all of the other responsibilities he’s had, particularly in the last couple of years. He is still doing sales support for now. . . not sure what the future holds on that front, but we’ll see what’s in store.
Wow! This is long, so I guess I’ll go for now. Thanks for all your prayers and well wishes! We’d love to hear from you too!
P.S. Crew and Libby, 2 Rb kiddos a little younger than Leah (see previous posts) are still putting up a good fight, so thanks for praying for them. Crew’s malignant cells went from 6 percent back up to 50 percent in his last LP, so please pray extra hard for him. He’s still here 60 days after they only gave him 30 to live, and they were at 86 percent, so keep storming the heavens for him to go back in the right direction! Libby’s bone marrow transplant is moving right along and hopefully she’ll engraft soon. You can check on them yourselves at www.carepages.com under LibbyNeifert (one word) and MasterCrew.
Tuesday, July 12, 2005 11:08 PM CDT
Just a quick note to say that yesterday's news was all good. I hope to add a journal with details and new photos maybe tomorrow -- it's been a busy week so far! -- but all news was good. . . again, I'll update with details soon.
Thanks for checking on us!
Friday, July 1, 2005 9:51 AM CDT
Howdy! We went to the oncology visit yesterday and we're thrilled to report that it was all good news! The MRI reults showed that everything is A-OK and there is nothing of concern! That is, of course, what we expected, but the nervousness always creeps in when it's time for results. Speaking of which, Leah will have her next EUA on July 11, so please pray that everything is clear there as well. On that day we are expecting that we will also be given the results of her latest genetic testing (Got the $8600 bill the other day -- thank you God that insurance paid!). As I have said before the results of these tests will have a forever impact on Leah, her chances for secondary cancers, her children, etc. Please pray that results are that she does not have the genetic form and that if she does, we take it in stride, and trust God in His plan for her. We will also be meeting with a newly-formed parent group for retinoblastoma on that day. We are hoping that the group is successful and that we may find some friends for Leah with a similar experience and hopefully in the years to come, when we face struggles that naturally, are certain to come, she'll have someone else just like her that can share her frustrations and issues with her eye, etc.
Leah continues to grow and develop and be lots of fun. She is talking more and more and more. She LOVES to swim and had a great time during our week at Crystal Beach. She keeps telling me "bye, bye --beach!" this week. She gives us a wink (both eyes), and plays peek-a-boo (only covers her good eye), and just keeps us amused most of the day. She knows most of all her body parts including knee, elbow, neck, chin, etc. She can also curl her tongue -- maybe I'll try to get a photo of that little trick! We are so blessed to have her in our lives. I think I mentioned before 2 little ones that we are praying for. . . Libby is 1 and she has trilateral Rb, currently in remission. She is receiving a bone marrow transplant this week, so please pray for its success. Also, Crew, who is about Leah's age, also with trilateral (both eyes and brain) Rb and was given less than a month to live, is not only alive more than a month later, but the doctors have taken him off hospice and are treating him again with chemo. He is in far less pain and they have cut back his medication, and most importantly, his tests a month or so age showed 86 percent malignant cells and a week ago it had decreased to only 21 percent! Please also pray for this family and all those affected by childhood cancer!
Take care!
Thursday, June 16, 2005 1:20 PM CDT
HI there. Leah had her MRI done yesterday and overall it went pretty well. By the time they took her back she was saying, "eat, eat" because she was so hungry, bless her heart. She did very well once again with the IV, thanks in huge part to the skill of Ms. Cheryl at the hospital who is so wonderful at what she does. She did cry, but didn't fight it which makes things so much easier. She was not pleased with the visit in general and woke up quite grumpy and irritable, but she was easier to calm and distract than times before. We will be at the beach next week for a little R&R, but we'll have a follow-up visit for results and a check-up the following week. We had her eye polished since it was beginning to show some of the teeth marks from where she always takes it out and chews on it! The occularist seems to think that the eye is or soon will be getting small, so we've decided to just continue with the prosthesis she has now (it's good and we're happy with it even though it's not custom-fit) and remold for a new one at her EUA in July or October. By going this route, we will save the cost of another eye because it will take the place of the last one we never got. Noah goes tomorrow for his further hearing evaluation. Alli is doing fine and glad that she's avoiding all the medical treatment! I'll update again on both kids after we get some results. I am also going to post a few new summer fun pics on the bottom of photo page. Take care!
Saturday, June 11, 2005 0:07 AM CDT
Hi all! Just a quick note to update you on things around here. We are still experiencing the roller coaster of kiddie illness -- just when one seems to get better something else comes up. Leah was in this week with fever and possible pink eye. Now today Alli has had a runny nose all day and woke up earlier tonight and was throwing up. Noah failed a hearing test this week, so we will have further testing done for that next week. Maybe our house is poisoned or something!? We are waiting for Leah to be absolutely, completely well before having her new prosthesis finally fitted and until then she is still wearing the original. She is scheduled for an MRI this Wednesday to check on things and I think Billy and I will both be relieved to have her EUA in July. After checking in every 4 weeks for over a year, it seems like forever since we have been reassured that she's okay. With all the random illness around here lately, I think some reassurance is good.
Things are busy around here as is typical. Since I last wrote, Billy and I celebrated our 9th anniversary. Alli and Noah are enjoying the outside play in the summer sun as is Leah. She has mastered climbing to the top of the playground whether I like it or not(makes me very nervous!). They are all particularly fond of swimming. We will spend a week at the beach soon and everyone is excited about that.
Leah is now running and talking more than ever with short phrases like "hold me please" and "Daddy bye-bye, work." It's cute. She loves to color and most of the time even keeps it on the paper (thank goodness for washable crayons!). She also loves to play with baby dolls. She's quite entertaining these days. She's getting so big (2 in August!) it's hard to believe. I think we will probably have to buy her new glasses soon as she is outgrowing her frames. She's had them since 7 months though, so I guess that's good. It turns out that the direct mail piece that will feature her story will be sent in September to 200,000 homes in Texas. I can't wait to see the final product.
I hope this little note finds you happy and healthy and finding some time for fun.
Thursday, May 26, 2005 9:43 PM CDT
Well, hi there! Thanks for dropping in. I am happy to report that although the kids are still not well, this week has been better than the last. There is nothing worse than a sick kid, unless of course, (in my case) it's 3 sick kids! The fever is gone and we are now left with very persistent coughs and runny noses. I took all 3 kids to the doctor AGAIN yesterday. I told her that I had spent this much on doctor visits and that much on prescriptions and they were all still coughing! I then asked that if she couldn't "fix them" that she please just "drug them!" (hee, hee!) Okay, not really like that, but at least give them something so that they could sleep at night (and so could we). So, we're trying some new medicine (free samples, thanks) and we'll see how that works out. Leah is in MUCH better spirits and we've even gotten some smiles and laughter this week. Today she ate lunch which was great because she really hasn't been eating at all. Surely we're on the mend. Also, I might have forgotten to mention before that she is currently getting all 4 of her first molars at the same time. That's enough to make you cranky in and of itself!
Today we went to the hospital to do the interview and photos for the hospital's direct mail project. I believe it will come out in the fall. It went well -- even though Leah was a bit of a stinker while I tried to talk to the ladies and she wasn't her most cooperative for the photo, I am sure it will be great.
Our next scheduled event is her MRI on June 15th. Pray about this one please. In addition to good results we pray that she handles it well. She is not scheduled until 10:30 that morning and she will not be able to eat or drink, plus she'll need to get an IV again.
I have finally gotten some new photos on the photo page. They include some that were taken of the girls in March and one of Alli's dance photos. There are none of Noah, I know I'll hear about it - he's having his photo made at the end of June and I'll post his then!
Hope all is well with you and yours!
Friday, May 20, 2005 10:31 PM CDT
Well, here's the latest. This has been a week of good news/bad news. . .
We went to the ocularist on Tuesday to get Leah's new eye. She was not feeling at all well, so he did not want to fit her until she is feeling better and everything is at optimum condition. That's bad news. However, the old eye is still working nicely and looks good (when she leaves it in). That's good news. I don't have any photos of the new eye since we didn't get it, but I should get some new photos of other stuff printed this weekend if all goes well and I'll post those for now.
I got a call from the public relations lady from the cancer center on Tuesday. They would like to feature Leah's story on a direct mail campaign for the hospital. That's good news. We have agreed to do that so we will meet with the writer next week and also have Leah's photo made. So, watch your mailbox, and if it's from TCH, don't throw it out with the junk mail!
Poor Leah has had a rough week. She began running fever on Monday for no explainable reason. Because of her history, we tend to freak when something comes up with her that cannot be explained. We took her to the doctor (and Noah and Alli who were still runny nosed and coughing) on Tuesday and all 3 checked out clear with no ear infections or other obvious maladies other than possibly a virus or cold, so that was good news for the moment.
I spoke with the genetics counselor on Wednesday. Apparently, Leah's entire tumor sample was sent to the lab in Philadelphia at the time the first testing was done. The practice is that the lab immediately extracts the DNA and reproduces it because it is a much more stable form with which to work. Standard practice is that they usually keep some DNA for 6 months or so in case something further is needed. In Leah's case, they did have the DNA and it should by now have been sent to Toronto to do the testing we need. So, that's great news! I have investigated the possibility of "banking" some of this DNA if satisfactory results are not found this go round so that if technology improves in the future, we will have DNA to test. Hopefully, we'll get some conclusive answers and that will not be necessary.
On Thursday, I learned about a little boy in Michigan who is a few months younger than Leah. His name is Crew and he has trilateral retinoblastoma (both eyes and brain), which is incredibly hard to fight. Crew is not doing well and the doctors have discontinued his treatment, opting to try to simply manage his pain. They have given him 30 days to live. Please pray for his family and for him that his final days will not be filled with pain. It's a terribly tragic story. I also found out this week that another little girl, Libby, who just turned 1 and also has trilateral Rb (was not expected to see her birthday) is now in remission - that's wonderful news. We hear all these stories all the time and are so thankful and blessed that Leah is doing well. I tell you, it could always be worse!
Which brings me to the fact that by Thursday, Leah continued to run fever and both big kids continued to cough and have runny noses, and Billy began running a fever. ARRGGG!! Will we ever rid ourselves of whatever plague we've had for the last 2 weeks?! After 2 nights of all-night coughing and everyone awake, we took all 3 back to the doctor again today. I have now been to the doctor's office on 5 separate days in the past 2 weeks, and paid for 7 office visits (today we just paid for Leah and got them to throw in some medicine for the other two!) Leah had continued to run fever (oh, I forgot to tell you about the rash earlier in the week or that I was treating her for pink eye too!) and is now also coughing -- sounds kind of like a seal, but also as if she's drowning in each little cough. After a blood count and chest x-ray to rule out pneumonia, she had an ear infection and everyone has croup. We got prescriptions for everyone. In addition to oral medicine and eye drops, we're doing nebulizer treatments for 3 kids 4 times a day for the next 5 days (at least) --2 treatments are 10 minutes each and 2 are 20 minutes each -- which means for about 3 hours a day we're giving medicine. (I think you could probably make a pretty good word problem out of this -- If 3 kids have to take 4 treatments for 5 days, and 2 treatments take 10 minutes and 2 treatments take 20 minutes, how many minutes. . .) Leah screams through her entire treatment which actually gets the medicine down in her lungs better, but is pretty miserable to witness. In addition, the medicine that they are getting has a tendency to "rev them up" and here it is after 11 pm, the big kids didn't have a nap, and Alli is still awake. Honestly, as I sit here and type not a full minute has gone by without somebody coughing. It's driving me insane! Leah and Noah both coughed until they threw up this afternoon. I am hoping that the medicine works wonders and tomorrow is a much better day for all of us!
We were invited to go to a fun activity on Saturday sponsored by a cancer group called Kids Unlimited -- A Day at the Farm -- with horse rides, petting zoo, hayrides, games, chuckwagon cooking, music, cowboy story telling, etc., which was good news. I just don't see it happening unless something really spectacular happens overnight. Not only are our kids not up to it, we can't in good conscience take them there with the possibility that they'll get other kids with low immune systems sick! What a bummer! We were really looking forward to that, so that's bad news.
In summary, good news: found tumor, participating in direct mail effort, hopefully on the road to recovery, things can always be worse; bad news: after 5 doctor visits at approx. $225 and 7 prescriptions at $160, everyone still coughing and cranky, we'll probably miss the fun at the farm, and still no new eye. Better news: Everyone is finally asleep and not coughing! Best news: tomorrow's a new day and we've got lots of friends who check in on us and pray for us! Thanks!
Monday, May 16, 2005 11:15 PM CDT
Hi! Thanks for those who prayed for us this week and left messages of encouragement in the guestbook. This past week was better than the last, at least in the fact that it wasn't quite as hectic. We still do not know what the status is on trying to find Leah's tumor sample. I called and our genetics counselor did not yet know if a sample was available from the Philadelphia lab. Frankly, I haven't pushed the issue because I am scared of what the answer will be. Maybe I'll muster up the courage to check on that tomorrow. The kids and Billy got over their sore throats and fever just in time for me to start in with it on about Tuesday or Wednesday. Then Saturday I noticed that the older two seemed to have pink eye. Luckily, I have loads of antibiotic eye drops from all of Leah's issues and after speaking to their doctor was able to get them started right away. I didn't want to risk Leah getting it! Leah has run a fever all day today and the older two each seem to have a runny nose that encourages me to run out and buy stock in Kleenex. Oh well, it's always something I guess. It could always be worse. Thank God that Leah no longer has her port, so at least we don't have to run to the ER with the fever!
We'll go tomorrow to get Leah's new eye and hopefully things should slow down for a while, although maybe I shouldn't say that out loud! Alli danced in her recital yesterday doing a fine job in both tap and clogging. That means no more dance until fall which comes as a much need break (for me -- she'd do it year round I think). Leah will begin dance next year which should be a real hoot -- I hope her teacher rests up this summer. Also, we have enrolled Alli for kindergarten next year at Our Lady of Lourdes Catholic School. She is excited about this prospect and we are just bewildered by how the time passed so quickly that she is old enough for school. Noah is still enjoying gymnastics and will continue with that through the summer. I continue the everlasting battle to "get caught up" and get organized around here. That school thing is going to be a real change for us! Billy is still going to school and working in sales, but has recently made efforts toward a few new job opportunities that should develop in the next month or so.
I will take some photos of the new eye and try to get them up by the weekend. It's been quite a while since I updated any photos! Hope all is well with you and yours! Please drop us a line when you have the chance.
Saturday, May 7, 2005 11:02 PM CDT
Well, this week has been like swimming upstream: difficult, frustrating, and making little progress. We had loads on our plate for this week with multiple appointments and obligations each day.
On Monday we went with Leah to the ocularist to paint her new eye. That went pretty well. We followed up on Wednesday, and when we tried on the new eye, it looked really "bug-eyed." Our ocularist had also made adjustments to her old eye (increased pupil size, made it a little darker) and we tried it on next. It too looked really "buggy." Because Leah's been wearing (?) a conformer for so long and because it is so much smaller and because she really only wears it about half the time (little stinker takes it out all day and night!), her tissue in the socket area is a little bit constricted. Rather than make a lot of adjustments to the new eye, we decided to adjust the old one, wear it for a few weeks and then once her eye has had a chance to adjust and sort of "stretch" back out, then go and have the new one fitted. So, we had the old one adjusted so that it didn't look like it was bugging out, and that's what she is wearing. It looks good. It is strange because we are very unaccustomed to seeing her with 2 eyes, but it is pretty. I think the new one will be even better because the iris (colored circle) is a little smaller on the new one and matches more closely in size to her right eye. The new one is more green, the old one more blue so that she will have two and will be able to wear the one that best matches according to how her natural eye reflects depending on her clothing.
Because she had been feeling pretty rotten with a runny nose, red sore throat and fever, we took Leah to the doctor Wednesday afternoon. She had an ear infection that she is receiving antibiotics for. By Thursday morning, Noah had fever and a sore throat, so back to the pediatrician we go. He had 2 ear infections, tested negative for strep throat although the doctor said "it looks like it should be positive" and he also is on antibiotics.
Thursday afternoon, I received a rather disturbing phone call from the genetics counselor at the hospital. She called because we were supposed to meet her Friday morning before Leah's MRI to collect a blood sample to be sent for the new genetic testing that we are to have done. She called to say that the lab "cannot find any of Leah's tumor," that the sample is gone. This is TERRIBLE news. They are currently hoping that the lab in PA that has done the previous testing might have saved part of the tumor sample that they had and that they can forward it to the lab in Ontario. Please pray that someone somewhere can find Leah's tumor. Without it, we will never have the testing we want and she will not get the answers we would like her to have. Either way, this would have been our "last shot" at getting some results (because they generally save 2 samples of tumor and both would have been used) because without the tumor, testing is just not as conclusive. Please, please pray about this. It is very important to us.
So that brings us to Friday -- the week that seemingly would never end. Leah did FANTASTIC on Friday morning. I was so proud of her. She had to get an IV and this is the first one she has had to get while awake (we've always been able to use her port before). She is very strong and it often takes both me and Billy to hold her down for procedures, but she just sat and did so well. She did cry, but she really did great. (It helps that we had it done in the cancer center where their skills are phenomenal!) She got her IV and we gave the blood sample to the genetic counselor (they are proceeding with testing hoping that PA will have the tumor). From there we went to diagnostic imaging to get the MRI (routine testing to make sure that her brain is not affected). She was hungry and tired and every so often whined a bit about her IV, but she was really doing so well. We got our pre-testing procedures done and just before the sedation would begin, the staff decided that she should wait and reschedule the MRI when she was not so snotty. ARGGG!!! I totally understand not wanting to put her at risk when she has a runny nose or congestion and can appreciate that. I just wish that someone could have decided that before the IV and everything else! She had seemed pretty clear Friday morning, but after/while crying all morning, she was pretty snotty. My biggest diappointment is that now, she'll have to do the IV and everything again, and she'll be much more aware since we have just done this. ARGGG! So, we removed her IV, set a new appointment (earliest available in a month and a half) and went to the optometry office to switch her orange sunglasses frames for red ones. I guess all was not lost. Meanwhile, Billy was feeling pretty bad with a sore throat, fever and runny nose, so he went to the doctor and got on antibiotics Friday afternoon. Late Friday, Alli started in with fever and a sore throat.
Which brings us to Saturday. . . and another trip to the pediatrician (that's 3 this week). She tested negative for strep and her ears were clear, so she is not taking antibiotics. Needless to say, it is a pretty whiny, cranky, atmosphere around here this weekend. We are hoping that tomorrow brings us a new week with a brighter outlook!
Thanks for keeping us in your prayers! Happy Mother's Day!
Friday, April 29, 2005 10:45 PM CDT
Hi there -- Just a note to update you on things around here. We went with Leah last Tuesday to see the ocularist. It was disappointing to find that he was not as far along with her new prosthetsis as we had expected and so she does not yet have her new eye. ARGG! We will go on Monday and Wednesday of this week and we should finally have it by the end of this week. Hopefully, all will go well and that will be the case. Meanwhile, she is scheduled for her MRI on Friday to check her remaining eye, left eye socket and brain. We just got a new computer, so I am still in the process of getting everything set up and haven't added new photos in a while. I will try to take care of that soon so that I can post photos of the new eye. Hope all is well with you. Please pray for us especially on Friday that things go well with the MRI and specifically that Leah's fears are calmed with the prospect of an IV and medical "stuff."
Love and blessings to all!
Sunday, April 10, 2005 10:30 PM CDT
Hi there! Well, Leah had her latest EUA on Monday and we’re thrilled to report that all is well! Her left eye is healing quite nicely with just a touch of inflammation left. The ocularist was able to create a mold of her socket and she will be getting her new eye within the next couple of weeks. I’ll send photos when we do get it. She has been in just a conformer for so long now, that it will be strange to see her with both eyes. We’re quite accustomed to her little pink eye and think she’s a cutie either way! Her right eye was also looking good with no signs of any retinoblastoma – yea!!! With this clear report, we’ll go a whole 3 months until the next EUA. That’s really good news because as Leah gets older anything medical is extremely difficult. She is uncooperative and gets soooo upset. She dislikes most everything -- getting her weight, height, temperature, and she hates to have anything connected to her like blood pressure or even a paper I.D. bracelet. She yells and kicks and screams and is pretty much inconsolable until we remove whatever it is unless she is drugged. And she especially dislikes the IV. (We miss her portacath on surgery days for sure – but definitely enjoy the fact that we no longer have to rush to the hospital if she has a fever.) They place the IV in her hand after she is asleep and the minute she wakes she begins to cry and try to rip it out. I am concerned about the MRI she will have on May 6th (routine scans to check her brain and orbits) because she will need an IV and she will be awake when they have to start it. Please add that to your prayer list!
Also, regarding genetic testing. . . if you haven’t stopped in for a while you’ll find the synopsis of our genetics consult in the journal history. Since the entry that details things, we’ve learned that our current insurance will not cover any of the cost of the genetic testing that we need. Because the testing is quite complex DNA analysis and because of the international factor (the lab is in Canada), the testing is quite costly and we really don’t want to a) have to pay for it out-of-pocket or b) have to wait for Billy to change his career path to get an insurance that would hopefully cover it. We have sent letters from our geneticist and ourselves asking for an exception for medical necessity and that the insurance company cover the testing but as of yet have not received a reply. That’s another good one to add to the prayer list please. We would particularly hope that they would respond in our favor and do so before the MRI on May 6th so that Leah’s blood can be obtained while she is already being poked for something else. We hit our yearly “out-of-pocket maximum” on February 1st, so if they agree to cover the testing, we shouldn’t have to even pay our 10 percent. That’d be really great.
Finally, just a few tidbits. . . Leah got some new (prescription) sunglasses this week, they are really cute. She is also wearing her regular glasses almost all of the time and much more successfully these days. She is up and running and busy, busy, busy. She stays on the go, tearing stuff up, making messes, and climbing all over the place. She chitter-chatters all day long. She is lots of fun at this age. I was looking for something on the Texas Children’s Hospital website the other night and lo and behold, I accidentally came across a link to “Leah’s story” about a child with retinoblastoma – clicked on it and there she was featured on the “Kids Courageous” section for Children’s Miracle Network. It is the same story that was used on 93Q Country radio station’s website during the radiothon, but I didn’t even know it was there. I put it in the links below in case you are interested. The older kids are doing fine, Alli getting ready for her dance recital in May, and Noah still enjoying gymnastics. Since we hope to have several months with little medical news, I’ll try to do a more detailed update on the rest of the family sometime soon. For now, I’ll just leave some new photos on the photo page.
God bless you and yours!
P.S. -- Since I originally wrote this, the insurance company called and said they would make an exception and cover the genetic testing. Yea! Now, we have to make sure they don't say something silly like they'll only pay part or make sure that it is not over "reasonable and customary" charges, but so far so good! :)
Friday, March 25, 2005 10:37 PM CST
Howdy! It took a few days but here I am to update on our appt. Wednesday with the geneticist. And the long awaited genetic testing results say . . .Drum roll please. . . not much! The testing was inconclusive -- ARGGG!
Okay, quick review -- when Leah was first diagnosed and we all thought she would keep her left eye, genetic testing was done of her blood only. The testing is done in an attempt to determine if Leah has the inherited form of retinoblastoma (Rb). Rb can be heritary or sporadic (random) and can affect one or both eyes. In Leah's case, there was only evidence of Rb in the left eye, but because she was so young, they did not rule out the possibility that it would not develop in her right eye as well. (Still a possibility although not a probability at this point.) In a child that has Rb unilaterally (in only one eye), the chance for a hereditary case is about 15 percent. When Leah was first diagnosed, doctors believed for a child diagnosed under the age of 6 months (Leah was dx. at 2 months), this percentage may be somewhat higher (although that thought is now being challenged -- that's good news for us). Also, because she had multiple tumors, her chances of hereditary Rb were greater. So, the blood was tested and no mutations were found.
Quick lesson -- Rb is caused by a mutation of the the RB1 gene. This mutation (change) causes cells to not function properly causing the disease. So, the genetic testing attempts to find that mutation to try to determine if the change is simply in the cells in her eye or in every cell of her body. Confused yet? This is complex stuff!
The most recent testing that was done looked at a sample of Leah's tumor and also of her blood. The hope was that the lab would find the mutation in the tumor and then look for it in the same place in her blood. If it was found in the tumor but not the blood, we could guess that the mutation was only in her eye, not hereditary. The report however states that "The laboratory did not find any mutation in the retinoblastoma gene (RB1) in Leah's tumor. As you know, this does not change the diagnosis. Rather, it suggests that there may be an RB1 mutation that is difficult to detect using standard laboratory technology or that the gene is silenced by another mechanism." Basically, without delving into further complex genetics (am I too late already?), we still don't know what type Leah has because she doesn't fit the "standard mold".
So.... we have chosen to send another sample of her tumor (they just use a small piece and it is stored at the hospital here in Houston) and a blood sample to a lab in Canada (there are only 2 labs in the US that do this testing) that specializes in Rb testing. They do some techniques that are more comprehensive (Leah's case is obviously not simple nor the more common error). Of course, this means more time and more money for testing.
This testing will not change the course of her treatment in any way. Why do it then? It will become increasingly important as she ages. We could wait and do this testing years down the road, but if something happens to her tumor sample, nothing can be done and we'll never know. Finding out if she has hereditary Rb is important for her to know because if she does have the hereditary form she has a 45 percent likelihood to pass it along to her children. Also, it affects the chance that Billy and I will have other children born with Rb if we choose to have additional children. Also, and foremost on our minds is the increased risk of Leah developing a secondary cancer during her lifetime. These are cancers that result from the genetic mutation that has caused the heritable form of Rb, not a recurrance of Rb. We've been told that a child with hereditary Rb has this increased likelihood of additional cancers and we know from our conversations with Rb surviors who have experienced sometimes as many as 3-4 additional cancers that it is very real. One source says that by age 50, the likelihood of a secondary cancer (often sarcomas - bone cancers, or melanomas - skin cancers) is 50 percent and that the likelihood increases in tandem with age -- 60 percent chance at 60, 70 percent at 70, etc. Additionally, if Leah's mutation is found, then we can be tested which might be crucial to other family members if for some reason Billy or I carry the mutated gene but never developed Rb for whatever reason. In one case I know, the grandmother had unilateral hereditary Rb, had 4 children none of whom had Rb but 3 carried the gene, and now she has 2 grandchildren with Rb -- one unilateral and one bilateral. So, because of genetics results can be important for Alli, Noah, and first cousins, etc.
So, to summarize, we still do not know what type of Rb Leah has (pray for sporadic!) and we have elected to do further testing because we really feel like the information will be beneficial to her in the future.
Wow -- I didn't really mean to make this so long and/or detailed, but it's hard to explain without providing some details on how it works!
In other news, everyone is eagerly awaiting the Easter Bunny. With the help of her wonderful, loving physical therapist, Leah is walking better and better. Because of her monocular vision and a problem judging depth, she walks to and then crawls over any change in surface (floor to carpet, a crack in the sidewalk, etc.) and then stands up and walks again, as she can see the difference but cannot judge if there is a difference in depth. She is learning to feel with her foot to determine if there is a step and then navigate it while remaining in a standing position. It is interesting to watch her develop these types of skills that enable her to compensate for any deficits she has. She is also talking and lots of fun these days. She will have her next EUA on 04/04/05 and at that time we'll make a mold for her new "hero" eye (hero-because it came along with the remedy to save her life). She is scheduled for MRI in May to check the brain and orbits ensuring that all is still clear there. I'll update again after the EUA if not before. I hope to put some new photos from Easter up next week and will also be getting her 18 mo and Alli's 5 1/2 professional photos back soon as well.
Take care and Happy Easter!
Thursday, March 17, 2005 10:58 PM CST
Hi there! Just a quick note to say things are going well. Leah's eye is healing very nicely and so far things are looking great. She is getting so fun and funny! We FINALLY are scheduled to receive some genetic testing information next Wednesday at 9 am, which is good. We still pray for a sporadic case, even though we know the odds are not with us. It will be nice to know something either way. Leah's next surgery (EUA) is scheduled for April 4th and we look forward to her getting a new "hero" (hero because getting her eye removed and getting a pretend one saved her life) eye shortly after. MRI and an oncology visit will take place in May, and then we should be free and clear until July! I'll update again after the genetic visit! Happy St. Patrick's Day!
Wednesday, March 2, 2005 9:07 PM CST
Hi there! Just checking in to update you on Leah's progress. She had a follow-up visit with the eye surgeon today and all seems to be healing well. He was pleased with how it looks and said that unless we have concerns, we will not need to see him again until after she receives her new eye. She will have an EUA to check her right eye (and the left socket too) on April 4th. At that time, we will also make a mold of her socket so that a new prosthetic can be made. Hopefully, all will continue to go well with that situation and once we get the eye we'll just have the EUA's every 3 months and the scans every 6 months. Leah is scheduled for her next scans (MRI of her brain & orbits) in May.
Thanks for checking in with us. I will surely update after the next EUA on April 4th, but I do update the journal and photo album from time to time even if I don't send an e-mail about it, so feel free to check in anytime. There are new photos in the album now, and a new link to the photo studio where we get the kids photographed. You can find photos of all of us there. . . under family, children (all 3), gallery sets --Halloween promotion, so check it out if you've got the time.
Hope all is well with you. Drop us a line when you get the chance!
Monday, February 28, 2005 11:11 PM CST
Hi there - things so far are looking good. We go to the doctor on Wednesday to check on things. I am in the process of adding new photos to the photo album and will update after Wednesday's visit to the doctor. Take care!
Wednesday, February 16, 2005 9:32 PM CST
Hi all! Just a quick update following our doctor visits today. . .
We removed Leah's patch on Monday night and were surprised at how she looked -- like a little prize fighter. She was a little bruised and very swollen. NO wonder she was in such pain last week. We were told to expect the swelling so it wasn't alarming really, but just sort of a surprise because she had so little after her enucleation. She also has had NO GOOP(WHOO-HOO!) and even though the tissue looks swollen it looks very healthy. Anyhow, the swelling is decreasing each day and we started today with a visit to the surgeon's office. He was very pleased with how things are healing and he was shocked at how little swelling there was because she apparently was quite swollen in the OR on the day of surgery. We will put in her conformer (clear disc that holds space) this weekend and go back for a check-up in two weeks. So, that's good.
This afternoon we checked in at the regular pediatrician for a 18-mo. well visit. She weighed in at 24 lbs. 15 oz. which is 50-75th percentile, and was 32 3/4 inches tall which is 75-90th percentile. Bottom line: she's getting big! She got one shot which she was not at all happy about, and all is well.
Hope today finds you happy and healthy!
I hope to post some new photos next week. Take care!
Wednesday, February 9, 2005 2:36 PM CST
Hi – this is the second part of an update on Leah’s surgeries last week and yesterday, so if you’re checking in for the first time in a while, read the journal history to get the rest of the story. . .
We went yesterday for Leah’s surgery. There was discussion as to whether or not we would try once again to repair the opening by going in with some more stitches. Honestly, that made us nervous because of the other stories of a couple of moms I know whose children had the same type thing and that was not successful. We do have great confidence in our surgeon and had asked him many questions about it and decided to trust in whatever he thought. The doubts were there, but we were trying to think positive too. Well, by Monday, the stitches had pulled open even further that the original 2 areas, and by then the suture line was open most of the way across her socket. The doctor thought it may be best to replace the implant altogether, and frankly, we agreed. There was not certainty that the implant needed replacing, but the thought of a drawn out ordeal with multiple surgeries that might eventually lead to replacing it was not a good option either.
The surgery went well according to the doctor’s report. I had mentioned before that there was concern with repeated surgeries that there would eventually be a shortage of conjunctiva – the doctor said post-surgery that Leah had plenty and that was not a worry, so that was good. He also said that he was still 50/50 on whether or not he thought the implant actually needed replacing. Although there was some separation at the front of the implant, her tissue was growing very nicely into the back and was very vascular, a good sign. Despite that, we all felt good that we were getting a fresh start. The doctor put a smaller implant in this time, saying that perhaps the size of the first was a factor. This greatly increases the likelihood that she may need additional surgery as a teen, when/if her body “outgrows” the implant. At that time, they would put another implant behind this one to fill the volume. There are clinical trials being done now on an injectable implant substance to fill volume in the socket, and that may be available by the time Leah grows to need it. For now, though, this size is a more conservative route, making sure that nothing is too big to get the closure to heal properly. The other impact from the replacement is, of course, scar tissue and slightly less mobility of the implant, since the muscles are involved. The doctor thinks that the difference will not be noticeable, so we’re hoping that is true. She had really good movement with her first one. For now, Leah has a large patch on the eye that will hopefully remain there 5-7 days. Then we go through the healing process again, waiting 6-8 weeks. She has been in quite a bit of pain with this surgery, much more than when her eye was originally removed. She has been sleeping a lot, crying and very clingy. This afternoon she did play a little and we finally got her to eat a bit. Hopefully, she’s on the uphill swing.
Her next “regular” surgery (EUA) is scheduled for April 4 to check her eye, so we will make a new mold of the socket then (hopefully everything will heal well in plenty of time) and then she will get a new eye made and we’ll all live happily ever after.
We also learned yesterday that there was a “technical problem” with our DNA testing. We have been waiting to get the results that determine her genetic situation. Something about it being resistant to amplification. . . anyhow that will hopefully be solved soon and we will get some information about Leah’s form of retinoblastoma. Keep praying it’s not hereditary.
So for now, we will go back to the surgeon next week to check up on how things are healing. She also has a regular well-baby checkup next week. I will update after those appointments.
Thanks for your kind thoughts and prayers!
Saturday, February 5, 2005 11:48 PM CST
Hi there! It’s been an interesting week and I thought we’d better catch you up on things so that you can join our current prayer effort. Make sure to take a look at the new photos in the photo album before you leave too.
Leah’s eye (okay, her socket, really) has been a real problem lately. I mentioned before about battling the goop. Her eye was always filled with goop all of the time. When she woke it was matted shut and throughout the day it needed cleaning. Since this began about the time that she got the prosthetic eye we attributed it to an improper fit and possibly a reaction to the new eye. The problem is that even when we switched to the clear conformer (a clear plastic disk used to hold space), the problem didn’t cease. We went through 2 ointments, 4 different steroid eye drops, oral antibiotics and still no luck. A mold was created to make a custom-fit eye when she had her surgery in January. When we went to the ocularist (eye-maker) he agreed with us that her eye should not look the way it did, and he did not want to proceed until we got things under control. A relief for us, actually, because we were tired (as poor Leah has to be) of the goop, and don’t really see how it would get better with an eye that fit more snugly. Frankly, some goop is expected, but hers was excessive and just down right gross.
So, back to the oculoplastic surgeon we go. (He has been seeing her through all the goop as well). Still puzzled, we tried more antibiotics and the strongest steroid we could give locally (just in the eye) to no avail. Well, back in November, 6-7 weeks after her enucleation, I had asked about a spot on the tissue in her socket. The doctors said it was fine. I asked again in January, “what’s that little dot that looks indented?” Again, I was told it’s fine. Billy on the other hand, continued to think that the source of the goop was somewhere in the corner of her eye. After talking to a couple moms in our retinoblastoma on-line group, I heard a couple of stories that sounded like Leah. I became more and more convinced that the little dot I had asked about (which by the way seemed to be getting larger) was actually a hole leading in to her implant, hence, the loads of yucky, smelly goop. So, a Friday afternoon call to the surgeon ended with a plan to see her first thing Monday morning, to really pin her down and get a good look and try to see what it was. Sure enough, it was a hole. We scheduled surgery for Tuesday to clean it up, cut the edges and restitch the opening.
Tuesday was a pain. We were told that Leah’s surgery time was 11 and when we arrived the hospital said they had her down for 12, AND they were running behind. They didn’t think they’d take her back until around 1, so they let her have some Gatorade from 11-11:15 (mind you she couldn’t eat because we were pre-surgery). Long story short, they finally took her around 3, poor little tired, starving kid! It was NOT the doctor’s fault and not really the hospital’s fault, just one of those things that happens (it’s not happened before in about 17 surgeries), but it was really frustrating. On top of it, we had all 3 kids with us, so we were trying to feed 2 without letting the other know. The end result was good (so we thought), the doctor said that they had actually found 2 holes (the one I saw and one in the corner – like Billy thought). They stitched her up finding minimal separation from the implant and things should’ve been fine. (Remember that within the socket is an implant – a porous ball that muscles are attached to and tissue grows through – it is enclosed in tissue stitched closed and it should never come out.) The problem is that when we took the patch off on Friday as directed there was a bigger hole than the original one and we could see the implant even more! We took off to the doctor’s office who confirmed quite disappointedly that something was definitely not right – the stitches had torn through the tissue and we will be heading back to surgery Monday or Tuesday. The hospital’s surgery schedulers had gone for the day but the doctor’s office said they would call first thing Monday and insist we get in on Tuesday. The opening has continued to increase in size and we will be calling first thing Monday to see if they can’t get her in sooner. Either way we’re in for surgery again this week. Please pray that this one takes care of everything. There are several fears: (1) you only have so much conjunctiva (the pink tissue in the socket), so if they continue to cut it out and not be successful and then there’s not enough to enclose the implant, they then have to graft skin from inside the mouth and (2) if there’s a problem with the implant being exposed, they may have to replace the entire implant which means that the muscles have to be isolated, removed, and reattached and that the tissue already growing through the implant has to start over again. My fears are compounded by the fact that the other 2 moms I know that have experienced this type of problem went through multiple (6 and 15) surgeries before they finally replaced the implant and got the problem fixed and they both started out with the surgery we are doing now. So please pray that Leah’s case is different and that this one works well.
After surgery, she’ll have to wait another 4 weeks or so before she can wear her prosthetic eye, and we’re not sure if the mold made in January will still be good given that the surgery is bound to change the socket. In that case, if we have to make a new mold, she’s not scheduled for her “routine” surgery until April. ARGG! We’re very used to seeing her without the eye, but I for one am really ready to have a new eye and be settled with things for a while. I had really hoped she’d have her new eye for our family reunion in a couple of weeks, but these surgeries knocked out that possibility. The important thing is that we get the socket healthy, but it would be nice for her to get to have 2 eyes again.
In other Van Beveren news, Leah turned 18-mo-old today. She is walking 10-15 steps at a time, climbing like a goat, and talking up a storm. She IS Miss Congeniality, telling everyone, everywhere “Hi!” It is really cute. She talks to everyone we see – at the store, in the elevator, during church, everywhere! She makes sure to tell each and every person hi in the doctor’s waiting room and particularly in elevators at the hospital or doctor’s office. It catches folks off guard, but in a good way. Noah (see his 4-year-old photos in the photo album) is still enjoying gymnastics and Alli dance. They have taken a break from swimming lessons after a year and a half. We all joined Billy recently during the second week of his Army 2-week training in San Antonio and had a nice time, getting some time to visit with Billy’s family and get together for dinner with some good friends.
That’s really all the news for now, but I before I go I have to share with you the newest lessons we’ve learned:
(1) 12 hours in a hotel room with 3 kids can drive one crazy
(2) you can teach a 1 ½ year old to curl her tongue
(3) if you toss a couple of juice packs into the front seat of the car, you must be careful because the straw from one can poke a hole in the other and before you know it the seat will be full of juice
(4) you can wash a piece of bubble gum in the washer and though the paper may fall off, it will stay intact (whew!) – this is NOT true for when bubble gum gets in the dryer (learned that one several months ago)
AND. . .
(5) It takes approximately 2 pounds of dry elbow macaroni to completely cover our kitchen floor!
Hope all is well with you -- Take care!
Thursday, February 3, 2005 0:10 AM CST
Hi there! Thanks for checking in. We are all well. Leah had surgery yesterday and is doing great. I hope to do a complete update and add new photos tomorrow or Friday. Take care!
Sunday, January 9, 2005 10:49 PM CST
HI there! Well, I had good intentions to update right after Leah’s surgery, but as always the little things just kept getting in my way and here I am a week later, but here’s the latest. . .
We had a wonderful WHITE Christmas! The older kids were in the Christmas program at church on Christmas Eve, and as we walked out of church, we were greeted with snow falling just like a scene out of a movie. It made for a magical touch on our Christmas celebration. The older kids and we played outdoors from 10:30 until 11 pm on Christmas Eve, afraid that the snow might be gone in the morning. We had snowball fights and made snow angels and just enjoyed the “new” experience. When Billy and I went to bed at 2 am, it was still snowing, so when Alli woke us just before 6, we hurriedly went through the surprises Santa left, and went back out to play. (Leah slept through both instances of outdoor fun, but she enjoyed the day and opening presents.) It came and went just like Christmas, but it sure did make it memorable. Not 7 days later, the kids were wearing tank tops and shorts and we had our air conditioner on. You gotta love Texas weather!
So, on last Monday, Leah had “the works.” A monstrous feat of coordination resulted in her having everything done with one bout of anesthesia. We were able to coordinate several procedures and 5 specific medical personnel – not an easy task, but with a little (okay, a lot) of help, we got it done. Under the loving care of our favorite and always requested anesthesiologist, first and foremost, Leah’s eye and eye socket were examined. Her right eye still is looking good, with no evidence of retinoblastoma – Praise God! The left socket is also apparently doing well, and although we have had some real issues there (more on this below), Dr. Paysse (opthamologist) says it looks great. We don’t have to return for a check for THREE months! YEA!!! Next, came the ocularist who made a mold of Leah’s left socket so we can get a new prosthesis that is custom-fitted. I will be calling him tomorrow to check on things there, but she should have a new eye (this will be the 2nd one) by the end of this month, and it should hopefully be a great fit which we are told will help to alleviate some of the problems we’ve had. Hope that’s true. The next to work on Leah was the pediatric surgeon who did 2 procedures. First, he removed her portacath. This is big news! The port is the little device that was implanted under the skin prior to any of Leah’s treatment. It is a central line that allowed her to receive chemo without damaging her veins. The removal of her port is big news because it means a.) that we don’t need it anymore or foresee needing it and b.) when she has a fever now we can treat it at home with Tylenol like a normal kid instead of rushing to the emergency room. Yea! The port is gone and they used the same incision spot (which had actually all but disappeared). Hopefully, the scar will be very minimal, but they place the incision just under her breast so that as she grows and develops it will be hidden. How clever and thoughtful those TCH surgeons are! Secondly, and oh so importantly, she had her ears pierced! :) She now has lovely little gold studs in her ears and though her hair is growing back nicely and rapidly, there is the definite feminine mark of pierced ears. She has had so many medical procedures that she just screams and fights at anything – even to mark where earrings go would be a major battle for Leah, so to have her ears done while she was asleep was great. We figured that this is the last time we plan to see a general surgeon for some time (forever!), so we should take advantage of it. Otherwise, she’d probably be grown before it was done, because neither one of us wants her poked one more time than necessary. Finally, she donated a blood sample for a research study being done at Children’s Hospital of Philadelphia (CHOP). Angela’s cousin’s 3-year-old is a survivor of neuroblastoma and we are participating in a research study that is looking to determine if there are familial traits that might be found. Whew! After all that, she came home and played. It’s always quite remarkable to see how quickly she recovers.
Leah is now 17 months, talking, and close to walking (she takes a few steps at a time, but prefers the quicker method of crawling) and developing quite a personality along with a bit of attitude as well. She’s lots of fun.
We are still waiting to hear results of her genetic testing that was sent out in September. It should return any time now, and we look forward to those results. They will hopefully tell us if she has the hereditary or sporadic form of this disease which is important because a.) the hereditary form means her offspring have a 45 percent chance of having retinoblastoma (Rb) and because b.) those with the hereditary form of Rb have a 40 percent chance of other cancers in their lifetime. I know of several Rb survivors who have also survived 3 or 4 other cancers! Heaven forbid!
We have been battling the “goop” in her left eye for what seems forever now, so she has not been wearing the prosthesis. In fact, she wore it to church on Christmas Eve, but other than that I don’t think she’s had it in for about a month. Her eye socket was very irritated and had something similar to pink eye, which resulted in some yucky goop in the eye that has never gone away. She is now on her 3rd prescription drops and 2nd eye ointment along with an oral antibiotic, and we’re still fighting it. It’s really gross. We see the eye surgeon again on Wednesday, and along with his treatment, many assure us that once we have a better-fitted prosthesis, things should improve. I’ve heard from lots of moms in our Rb group that the “battle of the goop” is likely to be an ongoing thing, but it should be better than how it is now.
In other family news, Billy is off with the Reserves for his 2-week active training. He is again in San Antonio, so we hope to possibly join him for a few days next week. His Army unit is readying themselves to be sent to Germany for 18 months next February. We are working on a “special needs child” consideration that would keep him stateside. Families do not get to travel overseas with the Reserves, so we are praying that everything will work out. He is also continuing his pursuit of a Bachelor’s degree through on-line courses with UTMB. If all goes well, he’ll finish right on time (if you’re on the 10-year plan) this December. :)
Whew! That was long! Hope all is well with you and yours. Check out the new photos in the photo album and drop us a line or sign the guestbook when you have the chance. We’d love to hear from you!
Sunday, January 9, 2005 10:49 PM CST
HI there! Well, I had good intentions to update right after Leah’s surgery, but as always the little things just kept getting in my way and here I am a week later, but here’s the latest. . .
We had a wonderful WHITE Christmas! The older kids were in the Christmas program at church on Christmas Eve, and as we walked out of church, we were greeted with snow falling just like a scene out of a movie. It made for a magical touch on our Christmas celebration. The older kids and we played outdoors from 10:30 until 11 pm on Christmas Eve, afraid that the snow might be gone in the morning. We had snowball fights and made snow angels and just enjoyed the “new” experience. When Billy and I went to bed at 2 am, it was still snowing, so when Alli woke us just before 6, we hurriedly went through the surprises Santa left, and went back out to play. (Leah slept through both instances of outdoor fun, but she enjoyed the day and opening presents.) It came and went just like Christmas, but it sure did make it memorable. Not 7 days later, the kids were wearing tank tops and shorts and we had our air conditioner on. You gotta love Texas weather!
So, on last Monday, Leah had “the works.” A monstrous feat of coordination resulted in her having everything done with one bout of anesthesia. We were able to coordinate several procedures and 5 specific medical personnel – not an easy task, but with a little (okay, a lot) of help, we got it done. Under the loving care of our favorite and always requested anesthesiologist, first and foremost, Leah’s eye and eye socket were examined. Her right eye still is looking good, with no evidence of retinoblastoma – Praise God! The left socket is also apparently doing well, and although we have had some real issues there (more on this below), Dr. Paysse (opthamologist) says it looks great. We don’t have to return for a check for THREE months! YEA!!! Next, came the ocularist who made a mold of Leah’s left socket so we can get a new prosthesis that is custom-fitted. I will be calling him tomorrow to check on things there, but she should have a new eye (this will be the 2nd one) by the end of this month, and it should hopefully be a great fit which we are told will help to alleviate some of the problems we’ve had. Hope that’s true. The next to work on Leah was the pediatric surgeon who did 2 procedures. First, he removed her portacath. This is big news! The port is the little device that was implanted under the skin prior to any of Leah’s treatment. It is a central line that allowed her to receive chemo without damaging her veins. The removal of her port is big news because it means a.) that we don’t need it anymore or foresee needing it and b.) when she has a fever now we can treat it at home with Tylenol like a normal kid instead of rushing to the emergency room. Yea! The port is gone and the used the same incision spot (which had actually all but disappeared). Hopefully, the scar will be very minimal, but they place the incision just under her breast so that as she grows and develops it will be hidden. How clever and thoughtful those TCH surgeons are! Secondly, and oh so importantly, she had her ears pierced! :) She now has lovely little gold studs in her ears and though her hair is growing back nicely and rapidly, there is the definite feminine mark of pierced ears. She has had so many medical procedures that she just screams and fights at anything – even to mark where earrings go would be a major battle for Leah, so to have her ears done while she was asleep was great. We figured that this is the last time we plan to see a general surgeon for some time (forever!), so we should take advantage of it. Otherwise, she’d probably be grown before it was done, because neither one of us wants her poked one more time than necessary. Finally, she donated a blood sample for a research study being done at Children’s Hospital of Philadelphia (CHOP). Angela’s cousin’s 3-year-old is a survivor of neuroblastoma and we are participating in a research study that is looking to determine if there are familial traits that might be found. Whew! After all that, she came home and played. It’s always quite remarkable to see how quickly she recovers.
Leah is now 17 months, talking, and close to walking (she takes a few steps at a time, but prefers the quicker method of crawling) and developing quite a personality along with a bit of attitude as well. She’s lots of fun.
We are still waiting to hear results of her genetic testing that was sent out in September. It should return any time now, and we look forward to those results. They will hopefully tell us if she has the hereditary or sporadic form of this disease which is important because a.) the hereditary form means her offspring have a 45% chance of having retinoblastoma (Rb) and because b.) those with the hereditary form of Rb have a 40% chance of other cancers in their lifetime. I know of several Rb survivors who have also survived 3 or 4 other cancers! Heaven forbid!
We have been battling the “goop” in her left eye for what seems forever now, so she has not been wearing the prosthesis. In fact, she wore it to church on Christmas Eve, but other than that I don’t think she’s had it in for about a month. Her eye socket was very irritated and had something similar to pink eye, which resulted in some yucky goop in the eye that has never gone away. She is now on her 3rd prescription drops and 2nd eye ointment along with an oral antibiotic, and we’re still fighting it. It’s really gross. We see the eye surgeon again on Wednesday, and along with his treatment, many assure us that once we have a better-fitted prosthesis, things should improve. I’ve heard from lots of moms in our Rb group that the “battle of the goop” is likely to be an ongoing thing, but it should be better than how it is now.
In other family news, Billy is off with the Reserves for his 2-week active training. He is again in San Antonio, so we hope to possibly join him for a few days next week. His Army unit is readying themselves to be sent to Germany for 18 months next February. We are working on a “special needs child” consideration that would keep him stateside. Families do not get to travel overseas with the Reserves, so we are praying that everything will work out. He is also continuing his pursuit of a Bachelor’s degree through on-line courses with UTMB. If all goes well, he’ll finish right on time (if you’re on the 10-year plan) this December. :)
Whew! That was long! Hope all is well with you and yours. Check out the new photos in the photo album and drop us a line or sign the guestbook when you have the chance. We’d love to hear from you!
Sunday, January 2, 2005 10:26 PM CST
Surgery tomorrow -- EUA, port-removal, custom-mold for a new prosthesis, and ear piercing. We'll update after! :)
Sunday, December 19, 2004 2:09 PM CST
Hi there! Well, the radiothon is over and it was quite a success! As of the end of the radiothon on Saturday afternoon they had raised $406,886 in 2 1/2 days! The website is still taking donations for a week, so that is sure to grow. Thanks to those who called to say they donated in honor of Leah. The crew at 93Q did such an awesome job on Leah's and all the other kids' stories. It was neat because they really did care. We spent Saturday up at the hospital where they were broadcasting and they were really great. They interviewed me live on air and Leah got to help present some flowers and the final check. It was neat. For those of you who couldn't listen, they mixed the kids' stories into a song and these songs played off and on during the radiothon. They did the broadcast from the hospital all 3 days and talked to and about the different kids at the cancer center. Leah's story was mixed into the song "In My Daughter's Eyes" by Martina McBride. It was beautiful. Her story will be on the website for another week if you haven't had a chance to see it and want to do so. Since Texas Children's Hospital is part of the Children's Miracle Network this year they will be having a telethon on channel 11 in April that we have promised to help with. THat should be fun. Hope you are having a wonderful holiday and taking time for the things that truly matter. Merry Christmas!
Thursday, December 16, 2004 10:25 PM CST
Hi all! Things are good at our house. We have been listening to the 93Q Country Radiothon all day and they are doing a great job. Leah's story played 3 times today. They mixed the interview into the song "In My Daughter's Eyes" by Martina McBride. It's really neat. We will probably be on live tomorrow via phone (in addition to the story which will continue to play) and again Saturday when we go to the wrap-up party. You can hear at 92.9 FM in Houston and also listen via the website. Also, the link below to her story is the main site. You have to click on donate here to find her story, but you don't have to donate to access it. Hope all is well with you!
Sunday, December 12, 2004 10:45 PM CST
Hi there! We have had a busy and exciting last week. We had a fun Breakfast with Santa, and a wonderful time at the Sunshine Kids Holiday Party last Saturday. There was great food and loads of fun activities for the kids. Then, Sunday night, Leah took her first official steps. She is gradually building her confidence to more steps at a time but is not yet fully walking. She can stand alone without any support or something to "pull up" on and she is taking about 5 steps at a time. We had her to both the ocularist and the eye surgeon this week to try and make some peace with her prosthesis. She has what is called GPC which is sort of like pink eye in her left socket, so we are leaving the prosthesis out while we treat it. We're still looking forward to that custom-fit eye to help alleviate some of the issues and the gunk with her eye. The 93Q Country Radiothon to benefit Texas Children's Cancer Center is this week and Leah's story is already on their website. You can see it at www.kkbq.com under the radiothon link. I will add it to the links below. The story is a pretty good one, although the author didn't apparently quite understand how the prosthesis works. The muscles are NOT attached to the prosthetic eye, just to the implant within the eye socket which is enclosed in her tissue -- so don't let it confuse you. Listen for us during the radiothon. We are planning another fun-filled week with 2 dance class parties, gymnastics, swimming, a birthday party for Noah, a visit from Grandpa,a choir practice, a party for the radiothon (complete with gingerbread house building!), and trips to the Nutcracker Ballet, the Christmas Train, and to see Santa at the fire dept. open house! We're just a whirlwind of holiday fun around here! :) Hope all is well with you and you're having some holiday fun as well! There are new photos in the photo album as well.
Friday, December 3, 2004 11:26 PM CST
Hi there! It's taken a while, but better late then never. Leah's latest MRI came back with good results. All is normal and clear of any suspicions. Yea! We are still trying to make peace with her new eye. It apparently does not fit as well as it need, and she takes it out a lot -- chews on it, etc. We are working with our ocularist to make necessary adjustments on it until we can get a mold for a custom-fit the next time she's under anesthesia. It looks like that may be in January. We are really not slated to have her next EUA until February, but we have asked to move it up to January for a couple of reasons, namely to be able to get a better-fitted eye sooner and to go ahead and have her porta a cath removed. I am still hoping to have her ears pierced as well, but that's not a certainty. We learned that our genetics testing was not yet finished and doesn't promise to be any time soon. We're guessing that it may come in January as well. This week Leah got her 2nd flu shot and the 12-month immunizations she was not previously permitted to have due to chemo. She is now up-to-date on everything which is nice. She is very close to walking and is quite a lot of fun to be around these days. Her vocabulary continues to build.
We are proud to be part of a project that is happening in a few weeks with Children's Miracle Network. They are having a radiothon and the proceeds will all be going to Texas Children's Cancer Center. I did an interview a few weeks ago that will be cut and spliced in to a song that will play on the radio (92.9 FM -- 93Q Country) during the 3 days. It is Leah's story and will air off and on during the 3 days along with quick "sound bites" that they will also use. She is not the only story, but is one of the featured and her story will also be on their website. I'll try to remember to put up a link during those days so you can check it out. It's neat that the proceeds will go to the actual facility that has cared for her and been so supportive of us. Listen for it on Dec. 16th-18th. On the 16-17th it will be from 5 a.m. until 7 p.m and from 9 a.m. till 2 p.m. on the 18th. I hope by now you know how much we think of TCH Cancer Center and the facility in general. They have been great. This is definitely a worthy cause.
I also got a call a while back from the Parent Consultant at our Candlelighters Childhood Cancer Organization office asking me if we would let them sponsor our family again this Christmas. So we will be getting a visit from "Santa's friends" before Christmas with some gifts for everybody. Isn't that nice? Candlelighters has been VERY GOOD to us, helping with parking expenses ($10 a day adds up over time!), and just being kind and caring. The organization as a whole does a lot to promote the awareness of and support the causes of childhood cancer. Check out the link to the awareness tree that will be on display in Washington DC if you have the chance. People donate $5 or more to purchase a gold ribbon in honor of a child with cancer and after Christmas the ribbon is mailed to the child. If you go to the "search ribbons" section, you can read about the kids for whom the ribbons were purchased. Wow -- it will make you acutely aware of what a blessing healthy kids are.
I really hoped as I said to get this update in sooner, but it seems there's always something else taking precedence. Life is never boring as the mom of 3 kids 5 and under. One (really bad) day last week I learned several lessons in the span of 1 hour. 1.When your 1-year-old throws a kicking screaming fit in the middle of Walgreens while you try to have a civil conversation with the pharmacist, it can be quite embarassing. 2. When your almost 4-year-old wraps (don't ask me why) the seatbelt under and around his leg so that it retracts and then cinches up tighter as you try to free him in the crowded space of the backseat of the suburban, you'll have no option but to try to turn him upside down and may have to wriggle the car seat out from under him before you'll get him out unless you want to cut the seatbelt. 3. If your child takes her $2500 fake eye out in the car (for the third time that day), you may have to search for 30 minutes, take out all the car seats and even pull the bench seat up to find it. 4. If your husband's cell phone isn't working right and you're sure he hasn't even left work yet, fearing that you are not going to get a break from any of this any time soon and he happens to pull in the driveway immediately after #1, while #2 & #3 are occurring, you're probably going to owe him an apology for the ambush that will greet him at the end of his long day. It's all about the little life lessons. . . :)
We are busily getting ready for the holidays and Noah's 4th birthday (12/19). It's a very exciting time as you can imagine. We are grateful that this Christmas we are not worrying about keeping Leah out of crowds, and are just free to go do all the fun, special holiday activities. The kids took photos with Santa the other day. Leah was not a fan. We are planning to go to "Breakfast with Santa" tomorrow morning and then the Sunshine Kids Holiday Party tomorrow afternoon. Both promise to be lots of fun. Alli & Noah are a marketing director's dream this year, very influenced by all commercials. Alli really wants things like the Smores maker, Icee maker, McFlurry maker, Hershey's Kisses maker, and other messy-sounding devices. Noah on the other hand is quite taken with a hot wheels monstrosity called a "Slime-cano." Just the name conjures up all kind of cleaning nightmares! It is HUGE volcano/car ramps thing and slime drips from one level to the other while hot wheels go down ramps and through chutes and fall in the goopy mess. Oh please, Santa, bring that one! Luckily we can still tell Noah (and sometimes Alli) things like, "oh, yeah, you have to be 6 to get that" and they buy it! Alli, the complete television aficionado, saw a commercial for the "Ab lounger" the other night and beckoned me to come view this "must-see" item that she declared we should really think about getting for her daddy (because he likes to exercise). Ahh, the impressionable minds of youth. . .
Hope this update finds you taking some time to enjoy the holiday season and all is well. I will try to update the journals once a week or so as I have been doing rather than always send a notice about it. If you haven't checked in for a while look to the journal history for anything you might want to know about that you might have missed.
Take care!
August 2, 2004
Wednesday, December 1, 2004 11:12 PM CST
Still waiting on MRI results. . . hopefully on Thursday night we'll be able to update and post some new pics. Thanks for your patience!
Sunday, November 21, 2004 11:16 AM CST
Hi there! Thanks for stopping in! Just a quick note today to say things are going well. We go to the ocularist again tomorrow to get Leah's new eye adjusted (details in the previous journal). She is doing really well with it and has only taken it out 3 times in the 10 days she's had it which is much better than the 4-5 times before lunch every day she'd take out the conformer. It stayed in an entire week before she realized she could take it out and we found her in her crib with it in her mouth! We're hoping that tomorrow's adjustment will help with the fact that it is often been turned upside down or sideways which makes it look like she's looking 2 different ways at once. I haven't put the Halloween pics up yet because several people have wanted to see the others and hadn't yet seen them. I will do that this week. We have an MRI of her brain ond orbits scheduled for Wednesday (a standard scan to monitor things and make sure that nothing is happening in her eyes or with a spot on the brain that can sometimes be affected by Rb), so maybe I'll update after and add the photos then. Until then, thanks for caring and take care!
Thursday, November 11, 2004 11:27 PM CST
Hi all! Today was a good day. Leah had her 6-mo. (off chemo) checkup and all went well. She is 24 pounds and 31 inches – a growing girl! She can now get her immunizations caught up and we can stop taking her yucky medicine! She has to have an MRI of her brain and orbits next month to assure that everything remains clear, but we’ve done that before and hopefully it shouldn’t be too bad. They will sedate her, so the worst of it is probably going to be the no-eating before the sedation. We should get our genetics results back hopefully next month and other than flushing the port-a-cath every six weeks, we shouldn’t have to go to the doctor until February if all stays well. In February she will have her next EUA to check on her right eye and at that time we will also have her port removed. We are also looking into the possibility of having the surgeon pierce her ears as long as he’s in there and she’s out-of-it.
AND THE BIG NEWS IS. . . Leah got her new eye today! It looks pretty good. She immediately turned it upside-down so that it looked as if she were rolling her eye at us, but she then continued to spin it around back to the right place. At least she has not yet taken it out and chewed on it like she always did with the conformer! :) Boy, let me tell you – we are going to have some stories to tell with this kid! We are to go back on Nov. 22nd for a checkup to make necessary adjustments, discuss concerns, etc. Our poor ocularist – he got 2 extra-picky parents in Billy and me. We’ve already begun our list to discuss! We think that the iris (colored part) is a little bit too big and that the pupil (which, since it doesn’t dilate/contract like a natural eye needs to be a good middle size) seems a little too small for our liking. Lighter colored eyes are harder to match and Leah’s eyes tend to change with her wardrobe as well, but we think he did a good job on the color. It does seem a little bit lighter than her natural eye, but in what she was wearing yesterday it did not. All of these things are very subtle and unless you are studying her, they are not very noticeable. All in all, it’s a pretty good first run, especially since Leah is not at all cooperative with the process involved in making the prosthesis. The next time, we will coordinate the ocularist with an EUA and he will be able to do exact measurements to match her natural eye and custom fit the socket when she is under anesthesia. For now, we are just pleased to have an eye at all, although it is a little bit strange. We had grown accustomed to seeing her without it and honestly, rarely thought much about it unless we were away from home and someone inquired about her.
I did get some Halloween and other photos developed this week, but for now will delay their debut in order to show those of the new eye, so tell us what you think. I will probably try to get the Halloween ones up in the early part of next week. Of course, if you ever miss any of the photos, you can just e-mail me and I can send them to you. I wish I could archive them like I do the journal entries, but I guess you can’t have everything.
Thanks for checking in! Hope all is well with you and yours. Thanks for your continued prayers for us (especially that the right eye stays healthy and that the genetics testing goes in our favor) and for all the little Rb warriors!
Wednesday, November 10, 2004 5:04 PM CST
Hi there! We have begun!! Leah's new eye is being made today. We did not attempt to do the process where they make a mold of her socket -- no one thought we would possibly get usable results. We instead did a trial and error fitting. We'll use this eye and if with time it doesn't seem to fit well, or we are unsatisfied with it, then we will have her custom measurements done the next time she is scheduled for anesthesia already. It looks good so far! The ocularist painted it today and is "baking" it tonight so it will be ready for us tomorrow. It is very exciting. We have a visit to the oncologist tomorrow for a 6-mo. checkup as well. Hard to believe that it's only been 6 months since she was on chemo -- seems like forever ago. Everyone is doing well and I hope to have new photos of the eye by this weekend at latest (I really hope to have them tomorrow, but have to give myself leeway :) just in case).
Friday, November 5, 2004 0:28 AM CST
Hi there! Thanks for checking in! Despite our best intentions, it’s been a while since we last updated and there’s lots to tell! It’s been a busy couple of weeks around here. Beware, this posting is long and rambly. . .
Last Thursday, Leah was admitted to the hospital and we stayed there until Saturday. She had a fever off and on since Monday and it carried through till Thursday when she also developed a rash. Because she still has a port-a-cath, (the implant in her chest, a central line where she received chemo, etc.), any time that she has a fever it has to be checked out. Since the port is there, they worry that fever could indicate an infection and it must be treated as life-threatening until proven otherwise. Well, we didn’t realize until we waited late in the day, and wound up having to go through the E.R. which was no fun. They call ahead for cancer patients, so they know we’re coming and we get a little bit of preferential treatment, but when the E.R. has 100 kids waiting, it’s a mess! We learned we’d be admitted around midnight, and our room became available around 3 a.m. Leah and I got to sleep about 5:30 Friday morning. They gave Leah antibiotics and ran tests that determined what we believed all along, that she had a virus. We stayed in the hospital until Saturday afternoon.
We had a nice Halloween and a fun trick-or-treat. Leah was the cutest little witch in town, Alli was a “pumpkin girl” and Noah was a firefighter. I should have some photos to put up during the week so check back.
On Monday, Leah had her EUA (exam under anesthesia) and it went very well. She is getting so big and really fighting any medical procedure these days. She is very aware the minute we arrive to any medical facility and definitely suffers from “white coat syndrome.” In fact, if you are wearing gloves or scrubs she’ll start hollering the minute you approach. Once we got her a little medicine to relieve her worries, she did just fine. Her left eye socket is healing well and her right eye is still looking good, with no signs of cancer.
Leah will meet with the ocularist this coming week on Wednesday and Thursday and should have a new eye to wear home on Thursday. She also will have her 6 mo.-off-treatment office visit with the oncologist on Thursday and then other than “regular” doctor visits and flushing her portacath every 6 weeks, Leah shouldn’t have to undergo any medical anything until FEBRUARY! Wow! That’s forever for us – yea! In February, she’ll have her next EUA and also have her portacath removed.
We are still waiting for genetic testing results that we hope will be done by the end of the year. They will tell us a little more about Leah’s cancer. Hopefully, we’ll learn that her cancer is random and not hereditary. Her doctor thinks that it will be unilateral (only affecting one eye) but hereditary (which means her children have a 45 percent chance of Rb and that Leah is predisposed to other cancers in her lifetime). We are praying that she is wrong. Noah had an exam on Wednesday, and his eyes are still looking good too. He will turn 4 next month, so he probably won’t need any more exams.
So, to review, we need to pray that Leah will cooperate with the ocularist this week when we go to have her eye made and that our genetics tests will come back with good results.
Now for some more explanation. . . to clear up a few things. . .
Leah’s new eye is like a contact lens. It fits in the upper and lower eyelid and will be removable. The “ball” part was surgically implanted and is covered by tissue so that when you look at her, her eye space is pink. The eye (the contact-type prosthesis) moves when the ball part underneath moves. She will be able to remove it to clean it, but can sleep with it and everything else. Hopefully, since it will be custom-fit, she will leave it alone. Right now, she has the clear plastic conformer in that holds space until we get the fake eye. It looks like a clear hard contact. She takes it out several times a day and puts it in her mouth, etc. She thinks it’s funny. We’re looking forward to getting the custom fit to hopefully alleviate that problem. She will have to go to the ocularist about every 6 months to a year to have her eye cleaned and polished and/or replaced (Sometimes they are able to just add a little to it without remaking it altogether.) while she is still growing at a rapid rate, and then not quite as often. When we go on Wednesday, they will make a mold of her eye socket (like a dental mold) – which is probably not going to be real easy since she screams and fights when they just take her temperature under the arm! Pray for success! We can perhaps do this under anesthesia if necessary, but that will add risks and delay things.
In other news, we’ve been busy, busy! We went to the last regular season Astros game courtesy of the Sunshine Kids. It was lots of fun. The following week we went to the Sunshine Kids House and painted pumpkins at a party there – another fun time. On the 23rd, we went to the Woodlands to attend the Children’s Festival at the Woodlands Pavillion. In addition to the festival, we stayed at the Woodlands Resort and it was great. The weather was warm enough that the kids were able to enjoy one of their fabulous pools with waterfalls and slides. We had cookies and milk delivered to our room for an afternoon snack, room-service pizza for dinner and an in-room movie with popcorn and candy bars and cokes. A fabulous buffet breakfast topped off the weekend on Sunday morning and it was all courtesy of Parents Against Cancer. It was a very nice break.
As for our other activities, Alli is taking dancing on Mondays (tap/ballet/jazz) and Wednesdays (clogging) and Noah is taking gymnastics on Tuesdays. They both have swimming on Fridays. Leah is getting physical therapy 3 times a month and is getting closer and closer to walking. She is climbing everywhere and I often find her grinning at me from the middle of the kitchen table. She is growing and learning to talk and is lots of fun! She receives services from a vision teacher 2 times a month to supposedly help her to learn to overcome any vision deficits she has. (Which is not much!) Billy is still working away at continuing his 4-year degree through online courses and hopes to finish this summer – YEA! He is still doing medical sales support and with the exception of some insurance glitches (they are charging us 3 times what everyone else is paying since Leah has cancer – long, ugly story) it’s working out pretty well for now. He is eligible to be called to active duty again after November 26th, but we think he will be left alone for a while. (Go ahead and add that to your prayers while you’re at it!) I am just trying to maintain things each day until about 11 p.m. or later when I collapse! We are busy but blessed.
I am posting new photos of the family and hope to replace them with some others from Halloween next week, so check back to see. Of course, I have been intending to write this for over a week, so be patient with me! I am only able to post 3 at a time, which is kind of a bummer. I will try my best to update the journal after the prosthesis next week, and give some photos of the new eye too!
One last thing. . . check out the links below to some new websites. The blood center features Leah in their newsletter, which can be found under “recipients.” The Candlelighters organization, which has been very good to us, is sponsoring a Christmas tree in honor of Childhood Cancer that is filled with gold ribbons (the symbol for childhood cancer). With a donation of $5, you can purchase a gold ribbon to honor a child with cancer. It’s a great cause if you’re looking to do some holiday good will. Finally, the retinoblastoma site at the end has tons of great info about retinoblastoma, prosthetics, etc. if you are interested. You’ll also find the story of a little girl there, Gorata, who is experiencing recurrent retinoblastoma. We are involved in several internet groups (they’ve been great for providing information, sharing experiences, fielding questions, and just “getting it”) that revolve around Rb, and learned of her a month or so ago when her mom posted a question. It is a really tragic story, and she could use your prayers too.
So, this has been lengthy, but well overdue with much information to share! Hopefully, we’ll stay on top of things a little better in the next few weeks with the prosthesis and genetics results, etc. Thanks again for checking in and for keeping us and all the little Rb warriors in your prayers!
Angela
Sunday, October 31, 2004 12:04 AM CST
Happy Halloween -- new journal entry and photos coming soon! We have had a crazy week with Leah in the hospital for 2 1/2 days. All is well though. She will have an EUA tomorrow, and I'll update after. We also have new photos to share. Hope to post everything on Monday!
Thursday, October 14, 2004 10:20 PM CDT
Hi there! Just a very quick update since it's been a while. Things have been a bit crazy around here. Leah's eye is doing great. The stitches popped yesterday, so it is now open and seems to be healing very nicely. We will follow-up with the surgeon on the 22nd. I hope to have a new family pic and change out the others soon, as well as post a more complete update. For now, just wanted to say all is well. Thanks!
Wednesday, October 6, 2004 10:50 PM CDT
CHECK OUT THE PHOTO ALBUM FOR NEW PHOTOS!
Hi there! Things are still going good for Leah and her recovery from her surgery. Her eye is still stitched shut although the stitches are starting to gap a bit. She is healing nicely and remains happy. Check out the new info. at the links section. She is featured in the Blood Center's latest newsletter.
Also, I have been in contact with some ladies who will help me as I begin efforts to do something in the arena of awareness regarding retinoblastoma. A story was featured on Montel Williams the other day. I believe it is set to re-air on Oct. 15th. The lady in the story is the grandmother of a child who died due to retinoblastoma and she is a champion of Rb awareness and legislation. I am excited about the possibilities she can help me with.
We attended the final regular season Astros game last weekend courtesy of the Sunshine Kids. It was lots of fun. This weekend we'll be painting pumpkins with the Sunshine Kids. It should be fun.
Thanks for checking in and for remembering us and all the retinoblastoma warriors in your prayers!
Wednesday, September 29, 2004 11:24 AM CDT
Hi! Just a quick note to say that the surgeon called yesterday and had the results of Leah's margins, and they were all good! This means that they test the areas around where the eye was removed to ensure that the cancer has not spread beyond where they believed. Her optic nerve was clear as well as everything else! Of course, that is exactly what everyone thought from pictures, but it is always good to get the actual testing results. She continues to recover with grace and happiness. If you're looking for details about the surgery or recovery, you'll find them in the journal history. I hope to add some new photos about once a week, but I am only allowed 3 at a time. Hopefully next week I'll have a new family pic. Have a great day!
Monday, September 27, 2004 3:34 PM CDT
Well, we did it! We kept Leah’s bandage on the entire 5 days – and it was no small feat, I’ll tell you! Today we visited the surgeon’s office and got Leah’s bandage removed . . . and in true Leah fashion, she did just great. There was lots of redness from all of that terrible sticky tape, but it is gone now. The eyelid is barely swollen and just a little bruised. She looks like she lost a fight, with a little black eye. After the bandage was first removed she cried off and on, but we’re not sure if that was tenderness around the eye, the sting of having the tape pull her delicate skin, or frustration that the eyelid is stitched shut and would not open. My guess is the last, but whatever it was, she is over it now. She is playing and happy. The stitches should supposedly last a couple of weeks, but there is a little bit of a gap already, so I am not so sure about that. I suppose we’ll see. In the meantime, when she’s awake, she’s in a perpetual wink. When the stitches do pop open, it will look pink, like the inside of your lip. We have an appointment with the ocularist on Nov. 3rd to start the process of getting her new eye, and we should have it by mid-November if everything goes well. Our doctor was very happy with how little swelling there is (as are we) and he seems to think she’ll have no problems or delays. She’ll have her next EUA (exam under anesthesia) on her right eye on Nov. 1st to make sure it continues to have no issues. Also, Noah will be checked again on Nov. 3rd. So until then, we get a little break. Everything has gone SO smoothly, I know that the tremendous volume of prayer offered for us has been instrumental in that. Thanks so much.
Wednesday, September 22, 2004 4:25 PM CDT
Just a quick update to let you know about our day. Everything went fine. We were off before 6 and at the hospital around 6:30. Leah went back around 8:20 and we were in recovery by around 9:30. The doctor said everything went very smoothly and seemed pleased with the procedure. He was able to use a large implant so that hopefully it will be a good size as she grows. He was also happy with the section of optic nerve he was able to get for testing and felt mostly confident that the cancer was all taken – we’ll have some definite answers on that later but have every reason to believe that it is GONE! The tumor sample will be sent to Philadelphia and genetic (DNA) testing will take a couple months before we get results. We are hoping they find the mutation; that’s our best-case scenario.
Leah seems to be doing great. She woke up in recovery and was really no different than she generally is after her monthly surgery, which is remarkably normal but a little sleepy. She woke up and talked to everybody and seemed fine. We had to stay there for about an hour and then we were free to go home around 11:30. We went up to the cancer center to visit our friends there and check-in at her oncologist’s office before we left. She was happy and playing. She took a nap on the way home and then enjoyed a milkshake and some french fries. She has a large patch on her eye and we are supposed to try to keep it on until her appt. on Monday. Wish us luck!! Fortunately, we have some wonderfully considerate neighbors who fashioned a jacket for her that has lined sleeves with a plastic mesh in between the lining and the sleeve. It allows her to move her arms and hands, but makes it difficult for her to bend her arms enough to pull at the patch. Isn’t that clever?! So far it’s working pretty good. She got an injection of pain medicine in the socket itself and we are giving her tylenol, but really she seems to be doing fine. The patch covers a large portion of her face, but swelling is minimal and so far it doesn’t look as though bruising will be too bad. Right now she is outside swinging with her daddy and brother. So far so good. . . She is going to be just fine and so are we. Thanks for your continued prayers.
Tuesday, September 21, 2004 10:14 PM CDT
Well, tomorrow's the big day. . .
We're feeling nervous and ready for it to be done. Hopefully, we'll be able to hold it together and Leah will have little pain, swelling and bruising. So many have offered prayers, thank you. Please continue to pray for us, especially tomorrow. Also, please pray that the genetics testing comes back in the best possible result: that they are able to find the gene mutation in her tumors. I hope to post an update after surgery tomorrow but don't promise anything. . . it will be a long day.
Saturday, September 18, 2004 0:22 AM CDT
Howdy! I had every intention of updating things right after our appt. last Friday, but we had a few bumps in the road, namely a stomach bug this week. The appt. with the surgeon went well and he was able to answer a few questions for us.
Leah’s surgery is still scheduled to take place on Wednesday, September 22, at 8:15 in the morning. We expect she will be done and ready to go home before noon. (Isn’t modern science great?) The doctor expects that she’ll be bouncing around like her normal self in 2 days. Essentially, here’s how it works. . . when they take her eye out, they will put an implant in (picture a wiffle ball) and they reattach the muscles to the implant. This allows it to move with the other eye. Then they enclose that implant with her eye tissue so that when she has no prosthesis it looks pink like the skin on the inside of your cheek. The surgeon has told us that he will try to put the largest implant in that her eye will accommodate, so that as her sockets grow, she hopefully won’t outgrow it. This will make things fit very tightly for the first year or 2, meaning that the eye movement will not be as good. After she grows a bit, it should get better. If she does eventually outgrow the implant, they can make the prosthesis bigger, which would also make it not move as well, or do another procedure where the put another implant behind the original to essentially fill the space. During surgery they place a clear plastic lens in the eye to help keep the space for the prosthetic and so that the doctor can see how it is healing. She will wear a patch for supposedly 5 days (nobody expects her to allow this for the entire time). The doctor will stitch her eyelid shut to help with healing and so we don’t really have to worry with the patch so much, or look at it until it get a little better. After 5 days the patch comes off and we wait for healing. The stitches on the eyelid are self-dissolving, so after a few weeks, she’ll just open the eye one day. After 4-6 weeks, if healing all goes well, she’ll see the ocularist who will handpaint a custom eye to match her other one. It works like a big contact lens. She will have a fully functioning tear duct system, so that eye will cry and move and do everything the other does except see. Any questions? Feel free to ask.
In other news. . .
The Texas Children’s Cancer Center’s art exhibit “Making a Mark” opened last weekend. It is an exhibit of artwork created by cancer patients and siblings. All 3 kids contributed to it, and Alli’s picture made the “Blue Ribbon” category. The exhibit will travel the country to other hospitals, children’s museums, etc. The opening was very nice and also fun for children. Unfortunately, Noah and Leah were throwing up all day, so only Alli and I were able to attend. It was neat though.
We told Alli and Noah about Leah’s enucleation today. The Child Life Specialist actually told them and they were pretty much like, okay. . . can we go play now? Alli did comment that Leah would not be able to see if her other eye got sick, but other than that they pretty much took it in stride. I think that Alli will still have some additional concerns, but she plays her cards pretty close to the vest and I think they will be addressed over time. She listened but didn’t really want to discuss anything. Just wanted to play.
Billy and I are really doing pretty well with everything now. I think now that we have had a little time to embrace the reality, we are ready to just get on with it. There will be some sense of relief when the eye and thus, the cancer are gone and testing results return. We have been able to find lots of resources on-line and have gotten support and helpful advice from many parents of and survivors of retinoblastoma. That, combined with the prayers of so many, has been tremendously helpful.
I know God has a special job for Leah. She has done so much already, touching many lives. It’s funny I have never really thought about asking “why?” – It has always just been “okay, what will we do?”. We spoke at church (4 times) a few weeks ago to encourage blood donation. Our church had its largest drive ever, something we’re very proud of. (Have you donated lately?) Also, Leah’s story will be featured in the Blood Center’s next newsletter, which is distributed through the mail in the Gulf Coast Area and probably on-line at the link below. (It hasn’t come out just yet, it has just gone to press). They had talked about featuring her in their 2005 calendar and ad-campaign, but the photos for that will be taken in October, before she gets her new eye, so we’ll maybe do that next year. Also, we have given consent for the Child Life Specialist at the cancer center to document Leah’s enucleation from our checking in at the front desk to her getting her prosthesis so that she can make a picture book to help other families who face our situation. I think that’s neat and will be helpful to others. There is a book called My Fake Eye that is available now, but other than that there is very little to help kids understand. We had a family photo taken last weekend. Our photographer (who moved from the other studio we have always used and opened her own great new studio, Imaging Studios, in Friendswood) is very sweet and also took some close-ups of Leah’s precious face. She agreed to allow the Blood Center to use the images in their publicity and will also do some “before” and “after” photos that she will share with the hospital to use in the book about Leah’s enucleation. On top of that we will be pictured in their yellow pages ad and on their business cards. We’re just everywhere these days!
Finally, just a quick lesson in retinoblastoma to clear up what seems to be a common misconception. . . RB is a disease of early childhood. It doesn’t spread from one eye to another. If Leah’s other eye becomes affected, it will happen not because we didn’t control the left eye. It happens because the cells in her eye are still developing and they are missing a gene. When it spreads, it goes through the optic nerve to the brain and then throughout the body. When that happens it is really, really bad with terrible survival rate, something like 4%. (Which is why if it doesn’t get better, you don’t mess around, you just get it out.) So, the other eye can become affected on its own, that doesn’t mean that it “spread”. Of course we pray that the right eye remains completely RB-free! Again, genetic testing of the tumor should give us some good information on this too.
I am sure there is more to share, although this is probably long enough. I hope to update sooner this time, but for sure after surgery. Please continue to keep us in your prayers especially on Wednesday.
Thursday, September 9, 2004 11:51 PM CDT
Hi everybody! Thanks to all that have checked on us, prayed for us, e-mailed, and signed our guestbook. It really is neat to know that Leah has touched so many lives. We look forward to each new entry in the guestbook and the encouraging and thoughtful words there.
I am sorry it has taken so long to update with this information, but things have been a little crazy around here. We learned last week that Leah's surgery will NOT be on the 16th, but has instead been moved to Wednesday, September 22nd at 8:15 a.m. The pathologists involved are not going to be there on the 16th, and their work is crucial to the genetic testing that we want done. It's easier on Leah to have surgery in the early morning since she isn't allowed to eat, so the change in schedule is good in that sense.
We will meet with the surgeon tomorrow and should learn much more about what's to come. When we do, I'll update again and explain about the genetic testing as well. For now, just know we're praying that they find the mutation in the tumor, which will mean that it's likely that only the cells in her eyes have the abnormality (because they couldn’t find it in her blood).
Alli and Noah are still uninformed. We hope to meet with the Child Life Specialist at the hospital next week and are expecting a book to share with them soon. I think that there will be some real concern particularly on Alli's part, but I think they will do just fine and probably help us more than we help them. I had an interesting conversation with Alli the other night. Out of the mouth of babes. . .
Something was mentioned about Leah’s eye and I said to her “well, you know only one of Leah’s eyes works. The sick one is broken so she can’t see out of it.” (a brief comparison was made here between this situation and our deaf dog whose ears don’t work). Alli then said to me, “but, Mama, if Leah’s other eye gets sick, then she won’t be able to see anything.” Talk about your fears voiced. I told her that the doctors were watching her eye very carefully and that hopefully that would not happen. Then she said, “but how can she have cancer, she’s only a baby. . .” Wow. I told her that it’s nobody’s fault and nobody knows why people get cancer but sometimes it happens to babies or big kids or mamas & daddies or grandmas & grandpas, and doctors are trying to learn why so they can fix it. That’s when she said, “Mama, if Leah’s eye doesn’t get better, is she going to die?” OH boy!! I told her that sometimes people with cancer do die, but that the doctors are going to fix Leah’s eye and she will be okay.
She is a smart little cookie. I am glad we had the conversation because I think it will help pave the way to the fact that we have to take the eye to “fix” the problem. Please remember Alli and Noah in your prayers as this whole cancer situation has inevitably been rough on them too. We are trying to maintain a sense of normalcy as best we can for them. Alli will begin a new season of dance on Monday, this year going twice a week. Noah began gymnastics last Tuesday. They both go to swimming on Fridays, and I try to catch my breath in between.
We have done lots and lots of late night scouring the internet for information in the last week and have gained lots. We have spoken with people on both coasts and feel confident that Leah is getting the proper treatment. We have also "met" many folks with connections to retinoblastoma, whether they are the parent of a child or an adult survivor. I think that in all we are doing pretty well with the whole situation. That is not to say that the whole ordeal isn't going to slap us in the face on the 22nd. We know it's going to be difficult and that it will be very real that morning, but we also know we have a lot of prayer support too. I think the hardest part is knowing that Leah will have to once again face things nobody, let alone a child, should. She is such a strong little lady.
Several people have asked about visiting Leah/us at the hospital. Again, we should find out more tomorrow, but what we do know is this: the surgery is outpatient (believe it or not!) & we’ll be home that night; Leah will likely experience some pretty severe nausea due to the optic nerve being connected to something in the stomach; and surgery is very stressful on her “ordinary” monthly exam, let alone this. We would rather you support us in prayer during this time. We really don’t want to hurt any feelings, but we need to focus on Leah and each other during the surgery and recovery. We also want to make sure we are focusing attention on and meeting the needs and concerns of our older kiddos. We would love to have visits once we have gotten over the initial recovery and know that Leah is comfortable and that we can enjoy your company. Thanks for understanding.
More after we visit with the doctor. . .
Wednesday, September 1, 2004 10:26 PM CDT
Well, hi folks. This website has been in the works for a while now, but current events have shifted priorities and I haven’t had the time I wished to put in to it. Regardless, we’ll gradually add to it as we can and it will now serve as an info. source for those looking for an update. Of course, you are always welcome to send us e-mail, I was just looking for a way to not fill up your mailbox. Anyhow, we will start with the current update and try to fill in the other blanks as we go. This is a private website and can only be accessed with the address I sent to you. Feel free to share it with your prayer partners, I just wanted you to know that you will not find it in a search.
This week has been hard. Leah had her exam on Monday and things didn’t work out as we had hoped. The good news is that her right eye is still free of any sign of disease. The bad news is that it seems we’ve lost our battle to save her left eye. The original large tumor that had begun to show new growth last month is very much alive and well. The area we were watching has more than doubled in 4 weeks. In addition to that, there are several smaller tumors that are showing recurrence. And. . . if that is not enough, there was yet another new tumor. The opthamologist thinks that at this point enucleation (the removal of the eye) is the best route for Leah. We are of course, incredibly saddened by this news, but know it is the only option at this point. Our choice is not a choice, put simply, we can remove the eye or Leah would die. As I told Billy, I’d rather choose a prosthesis than a coffin.
Our older children DO NOT KNOW yet, and we would like to keep it that way. Alli is especially astute and will pick up on things easily, so we are trying not to discuss it in front of them at this time. We are working with the child-life specialists at the hospital to tell them in a way that will help them to understand things at their level and only shortly before the procedure so that they do not have a long time to anticipate and worry.
Billy and I are going through what I think is probably a normal grieving process. We know that it will all be okay with time, but are still very disappointed and sad. The loss of vision is very different from the loss of the eye. (Your little finger does very little to help you function, but you’d still miss it if it were gone.) We, of course, realize how much worse it could be, and know that compared to many, we are lucky. However, as a parent you just want everything to be perfect for your child, especially when she has already fought so hard. We know that with our help she will continue to be the happy, beautiful girl she is, and with some time, it won’t be that big of a deal. Right now, though, we’re just really sad.
There is an added benefit to the enucleation. With a tumor sample, further genetic testing will be done, and it should give us much better information. We should be able to a high degree of certainty (never 100%) know if she carries the genetic link. This is important because if she does, her children would have a 45% likelihood to get retinoblastoma. Also, a child with the hereditary type of retinoblastoma carries the highest probability (40%) of all cancers to develop a secondary cancer (like leukemia or sarcoma, etc.). Please pray they find no link.
So, for now, she is scheduled for surgery on September 16 at noon. Please keep us in your prayers. Please pray specifically for Leah to have minimal pain and discomfort, for the skill and wisdom of all of her doctors, and for our family to find peace within God’s plan.
I know there are those of you who are interested but won’t ask questions, so there is good information on retinoblastoma and on how enucleation and prosthetics work at these sites:
www.ioi.com/patient/primary.html (figure 1 shows the prosthesis)
www.stjude.org/disease-summaries/0,2557,449_2167_3003,00.html
www.stjude.org/search/0,2616,582_3161_10465,00.html
www.eyecancer.com/Enucleation/enuc.html
www.lpch.org/DiseaseHealthInfo/HealthLibrary/oncology/retino.html
http://www.instituteforfamilies.org/retinoblastoma.html
Wednesday, September 1, 2004 2:46 PM CDT
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