Journal History

Click here to go back to the main page.

Tuesday, January 13, 2009 3:01 PM CST

Happy New Year All -

Things are going pretty well here. We had a wonderful holiday - it was great to spend time with so many of our family and friends.

We had to switch up protocols again because the drug Meg was taking summer-fall was causing her counts to bottom out weekly and we just couldn't get enough of the medication onboard to be effective. So the Children's Memorial docs started her on a new protocol in November and this medication does not cause her counts to drop.

We had to go to Chicago weekly for the first 5 weeks of the protocol and so far things are looking good. Now Meg goes once a month for checkups and we do weekly blood draws locally.

We surprised Meghan on her birthday with a sweet 16 trip to the beach in Mexico. She was so excited. We had a wonderful time.

Meg will scan again in February. We hope this new drug is stabilizing things once again for her.

Thanks for you continues support.
Love,
Shannon

Friday, October 10, 2008 8:54 AM CDT

Hi all -

Meg started her sophomore year of high school. It's so hard to believe!

We had a wonderful trip to Ireland. It was so beautiful (even with daily rain) and the kids just loved every second of it. We had a great house. We so so much of the country. And we were so blessed to have Grandpa and Grandma Heisler with us and Aunt Kim. It was lovely.

Meg had a scan in Sept that showed a few spots of slight progression in the brain. Damn. :(

So we reviewed a few options with Dr. Jason from Children's Memorial in Chicago. And started Meg on a course of Vinblastine. She's had 2 doses and then the counts dropped. Uggghh. Her bone marrow is just so tired of this stuff. So now we are trying to get the counts up again so she can resume at a lower dose. We need to feel like we are doing something.

Meg doesn't appear to have any symptoms from this recurrence so that is a good thing at least. She is working on the school play this year and is in Madrigals. She is still trying to drive from time to time but it scares her quite a bit.

Please keep Meg in your thoughts and prayers as she starts this new treatment course.

It was 9 years last month since Meg's diagnosis. We've been blessed with such wonderful support and we continue to charge on in this battle.

Love,
Shannon

Monday, June 30, 2008 11:08 AM CDT

Dear all -
Wow summer is here already. Meghan is doing so well. She finished her freshman year of high school. She had her struggles off and on staying on course academically - but generally she had a pretty good year. Socially Meghan blossomed this past year. She really enjoyed meeting new people at Lutheran High School. She participated in 2 school plays and sang in the choir. While she's not a typical teen who is on the go all the time. She's really been doing more and more. Sometimes she still likes to be a bit of a homebody. But she's 15, should I complain about that? ;)

Medically things are still going pretty well. Meg has been taking the lenolidomide since last fall. Her scans have all been stable. I think once we even had a couple of tumor spots that had "very slight decrease".

She's had some periods of time where the medication has really caused her counts to drop. She needed platelets and blood transfusions. But we continue to adjust to the dose to try to accommodate that.

Meghan has her driving permit now. She really doesn't love driving so much. But she's trying to get the hang of it. With her smaller size it really makes her nervous though. With time I think it'll get better for her.

Meghan is spending much of her summer babysitting. She's been doing things with friends and is gearing up for another week at Camp Coco.

We will be traveling to Ireland in August. We are all looking forward to that great trip. And from there it'll be time for her to head back to school as a sophomore. Meghan is going to be in the show choir this next year.

Thanks for checking in.

Cheers,
Shannon

Thursday, November 29, 2007 9:22 AM CST

Happy Holiday all -

Things here are going pretty well. Meg entered a clinical 1 phase drug trial in September with the hopes of once again stabilizing the tumors in her brain and spine. The trial is run out of Children's Memorial Hospital in Chicago. So we've been making several trips up that way.

So far things are going pretty well on drug. It has caused her blood counts to drop some - so we watching that closely. So far the MRIs have been good for us. The first one in October showed slight improvement and stable. And another this week showed stable. So we are very encouraged by that.

We went on our RV trip to Yellowstone and the Grand Tetons in early August. It was amazing. We had such a wonderful time. The kids really enjoyed every minute of it. We are so thankful to be able to do these trips with the kids.

Meg started high school in September. She's attending a small Lutheran high school in town. She's really enjoying it so far. She's been more active and that's been a good thing.

We hope this holiday season finds you all healthy and happy. We appreciate all the support you've given over the years.

Merry Christmas and Happy '08
The Heislers

Tuesday, July 31, 2007 11:43 AM CDT

Hi all -

Things here are busy as always. Meghan is starting high school in just a few short weeks. We think she's slowly started to get excited about it.

Meghan has been doing a bit better emotionally these past few months. She's been somewhat more social and that's a very good thing for her.

Meghan's last scan was very similar to the one this past spring. Stable in the spine, slight growth in the brain. So it does appear that it's time for us to try to do something else again to stop this slight growth. She is not symptomatic and clinically is still doing well. But if we can stop this "slight growth" pattern - then hopefully we keep her this well.

So we are hoping to get her into a clinical trial at Chicago Children's for a new "chemo" type drug. It shows some promise and is really the next best option for Meg. Hopefully she'll be a candidate for the drug and will get it quickly. It makes Meg sad to have to do something again - but it does sound like it's not too harsh so that is a good thing.

Meg has continued doing her horseback riding and really enjoys that. We are headed out on a trip to Yellowstone and the Tetons soon for an RV adventure. We are all looking forward to that.

Thanks for continuing to check in on us and for continuing to keep Meg in your thoughts and prayers.

Love,
Shannon

Tuesday, January 9, 2007 7:39 AM CST

Wow has it been a REALLY LOOONNNNGGGG time since we've updated. And for the most part, no news is good news.

Meghan's last scan gave us another stable report. We were happy to hear that news. We continue to monitor her with the oncologist, and an opthomalogist, and with an endocrinologist. Meghan is going to continue to be short and that's troubling for her. She is now about 4' 9" and she doesn't really seem to be growing much at all. What growth she is getting seems be be absorbed by the scoliosis in her spine.

Meghan is in 8th grade and is eagerly preparing for high school. Terry and I really can't believe that is coming up already. It's truly amazing. She is looking at several high schools in the area. She's focusing on the smaller schools -which are probably a much better fit for her physically and socially.

She's been a bit more active in school this year with her art class and yearbook. Meghan is still not too interested in being social outside of school and that continues to be a struggle for her. But there are times when she really works on it and it's better.

Classwork this year has been up and down. She has days/weeks where she just isn't interested much in what's going on academically. Which forces us to be the bad guys and get on her about it. Hopefully that will turn around for all of us soon. It's hard to know what is typical 14 year old behavior, and what might be related to her illness and the treatment she's had. So we just plug away the best we can.

The holidays were really nice. We were able to see all of our family and that was great. We went to visit Grandma Judy and John and Great Grandma Nixon in Ohio over New Year's - and that was a ton of fun for all of us.

Meg and I are still working out with trainers and that's been really helpful for Meg with her balance, etc. She's gotten much stronger. She still is *supposed* to wear her back brace but she fights harder and harder on that anymore. She got a new brace and it needs to be adjusted for it to be more comfortable for her to wear all the time. Her back had worsened a bit at the last appt. with the orthopedist so we are concerned that she'll need surgery soon.

As usual, we are in the middle of a busy hockey season for Nick. Most of the time all of us attend all of his games and it's really fun for all of us.

Terry and I are starting our training to run a half-marathon in May. I'm thining about how to turn this run into a fundraising opportunity for the Children's Brain Tumor Foundation. It seems like all this effort somehow should go "towards" something.

Our brain tumor community lost a wonderful warrior and a family friend recently, Kyle. We've talked about him on our board several times. It's heartbreaking for us all everytime we think about him. Please keep his family in your prayers. His website is listed below if you want to leave a message for his family. We met them at camp sunshine and we miss them all very much.

We hope you all had great 2006 and we wish you much health and happiness in 2007. Thanks for continuing to check in on us.

Shannon

Saturday, July 15, 2006 9:34 AM CDT

Wow it's been a really long time since our last update. Things are going really well for us here.

First off Meghan had her scan in June and the results were once again stable. We were very thankful to once again here those words. Next scan will be in October.

We went to Hawaii (Kauai) in June as well. It was a fantastic trip for all of us. We stayed really busy but at the same time we all were able to lay back and relax. Meghan loved playing in the surf, Nicholas loved snorkeling and boogie boarding. We all went on a helicopter ride and an awesome catamaran snorkel ride. Nicholas took surfing lessons as well. The kids really handled the long flights well. Our condo was great. We met up with some friends while we were there as well and it was great that the kids got to play together.

Meghan just returned from another week at Camp Coco. She said she had a great time. I can't believe she's gone to that camp for the past 5 years.

Meghan starts her last year of middle school in a few weeks. Time just goes so quickly - I can't believe she's a short year away from high school. She's still taking horseback riding lessons and is hoping to ride in a show later this month.

Thanks for checking in on us. Know that we are so thankful for all your continued prayers and good thoughts.

Sincerely,
Shannon

Wednesday, March 22, 2006 8:01 AM CST

Hello all -

We hope this finds you all doing well. Things here are going very well for us. We have finally wrapped up hockey season and we are enjoying having some free weekend time back.

Meghan is doing great. She really just seems to get stronger and stronger. She is now working out twice a week with a trainer to help get some of her muscles back from when she was in the wheelchair. Her calve muscles are almost non-existent. She is in definite need of some strength training. Hopefully this will strengthen her core muscles as well and that will improve her balance even more. You really cannot tell much anymore of her deficits with walking, etc. - she just looks a little "clumsy" from time to time now.

Two weeks ago, she decided she was ready to give bike riding a try again. I was a little panicked at the thought, but she really wanted to try it so Terry helped her along. And after just a little while, she was riding all on her own again. She hasn't been on that bike in at least 2 years.

Two years. That's how long it has been since the scan we had in March 2004 when things got so rough for Meghan and all of us. It's amazing to look back over what the past 2 years have brought us - it's painful too though. I feel like we just went through a tunnel and that we just went into autopilot to get through it. The paralysis, the radiation, the hours and hours of PT at the hospital and at home. At the time, it just seemed what we did. But now I realize what a real accomplishment we all achieved together. Some days I look at Meghan with such amazement. When she's throwing a fit about doing the dishes or about having to get started on her homework and I sort of laugh. Because I have seen how much she can do when she puts her whole heart and soul into it, but some days she just wants to be a teenager that fights it all. In some ways, seeing her this way is refreshing. In others, not so much. ;)

We are still planning to head to Hawaii. But with the weather problems they've had there and the difficulty to find what we want in accommodations for that time period, we've decided to go as soon as school is out instead.

There are several of our friends in the brain tumor community who are battling this monster now. We ask that you keep their families in your thoughts and prayers. I have linked to their website below. Kyle has the same tumor type and spread that Meghan has. We met him and his family sometime ago on a support board, and then in person last year at Camp Sunshine.

We thank you for your continued thoughts and prayers. Know that while I have slowed on updating this website, it is only because we have gained a sense of a normal life; it is not because we don't still think of all of you and give thanks for you all every day.

Sincerely,
Shannon

Monday, January 23, 2006 7:34 AM CST

Hello all -

We hope you are all doing well. It's been some time since our last journal entry, and in this case no news has definitely been good news. Meghan is continuing to do very well.

Last week brought scan time again. It really just sneaks up on us sometimes. First we met with Dr. Brandt and he said that he thought Meghan was doing very well. He said she's looking stronger each time he sees her. He was glad to see she wasn't using the crutches anymore at all. Then we headed over to the hospital for her scan.

The results were that everything appears stable. Yippee. Nothing got smaller, and nothing got bigger. The plan at this point is to stay the course and keep Meghan on the immunotherapy drug. Both Dr. Brandt and the Dr. that develops the immunotherapy drug believe that it might be a good idea, though, to intermix the immunotherapy with some Temodar (oral chemotherapy) every couple of months. This would give Meghan a break from the shots. Meghan took Temodar once before (it's pretty mild) but she took it when things were bad for her and right before she required radiation. We are still thinking about what to do with the Temodar. But since the immunotherapy has a very limited supply, it's probably a good idea for us to add in something else as well.

Dr. Brandt also said that with this last stable scan he thinks it's time to go longer in between scans. So we are waiting until 4 months for her next scan.

Meghan is still wearing her back brace almost all of the time. She went to see the orthopedist this month as well and he was happy with the progress she's making. The curves in her spine are improving. She definitely has better posture now and she says that it really feels better with the brace on vs. off.

Meghan had a big birthday this month. She's now officially a teenager. She had several friends attend a slumber party with her at a local hotel. They had a really nice time. It's been so hard to believe that she's 13! But I know she enjoys being able to say that she's a teenager, even if her parents don't enjoy it.

She's going to start up swimming lessons again this week. We keep trying to encourage her to get more active and to get her muscles moving so she can get stronger and stronger. Swimming is something she's always loved to do so it's a natural fit to get her back in the water. It's like coming full circle from March 2004 in some ways because she was in lessons back then when she started losing function of her legs, etc.

Meghan still loves to read and play Sims on the computer. She really loves reading comic strips - Calvin and Hobbes being her favorite. She is usually reading a couple of different books at the same time as well. She's been more social with friends the past couple of months. Though we still have to push her to initiate outings with her friends. She's spent so much time at home and alone that I think it sometimes doesn't even occur to her to try to make plans with others. It's a catch-22 for us, we like her home with us, but we want her to be embracing this time in her life as well.

We have plans to go to Hawaii sometime this spring. The kids are really looking forward to it. Nicholas is keeping us all very busy with his hockey. The season will officially be ending in March. So it'll be nice to have some weekend time back.

Thanks for continuing to check in on us. We are so thankful that things are going well and for your support.

Can you please keep our cousin, Joe, in your prayers. He's in the heart transplant program at Barnes in St. Louis. His website is listed below.

Sincerely,
Shannon

Thursday, December 1, 2005 2:20 PM CST

All is still going very well with Meghan. She's doing great with her back brace and has adapted to it like a champ.

We have sad news though - Meg's wonderful friend, Tera, from Camp Sunshine passed away this morning (12/1/2005). We so loved meeting Tera and her family and we will miss her very much. Please check out the Tera's website that is listed below and say a prayer for their family.

Thanks,
Shannon

Thursday, October 20, 2005 9:20 PM CDT

Things are still going well here and we are still very much enjoying our recent Stable MRI report.

Meg wanted me to ask all of you to please pray for her dear friend from Camp Sunshine - Tera. Tera has a brainstem tumor and it's been a rough time for her and her family since Camp. I'm linking to her website below so you can check in on her. I'm also putting a pic of Meg and Tera on the pics page.

Also - check out the link to the St. Louis Blues website below. Several of the Blues players were at Cardinal Glennon hospital last time Meghan was there and she got to meet them. It was great for her.

Thank you for continuing to check in on us. Your ongoing support keeps us all going.

Thanks,
Shannon

Thursday, October 13, 2005 7:58 AM CDT

STABLE! STABLE! STABLE! STABLE!

That's the word from the MRI. Everything is "at least" stable. There are several mentions on the MRI that state that lesions are enhancing less which may also indicate some improvement. But for the most part this scan is STABLE, and that's what we wanted to hear.

This means we do not have to make any choices at this time about treatment and we will stay the course we are on.

Thank you all so much for the prayers, well wishes, good thoughts, and messages in the guest book. Meg read them all this weekend and was so happy. She said they helped calm her nerves before the scan.

Thanks again!

Love,
Shannon

Monday, October 3, 2005 1:51 PM CDT

Wow it has really been a long time since I updated. We finished up the summer just as busy as we started it.

In August, Meg and Nicholas spent a week at Grandma Kathy and Grandpa Barry's house. They had a great time.

Meg, Nicholas, Terry and I then spent a long weekend up in Chicago. We had so much fun. The kids really enjoyed seeing the sites. I've loaded some pics from that trip so check them out.

Also in August, Meg had her checkup with the orthopedic specialist. He said that her legs had really improved so she got to get much smaller (and less obvious) braces for her feet. The bad news was that her back had worsened - she has severe kyphosis (back hunching) and scoliosis (spine curving) as a result of her illness and radiation. It's really at the point to need surgery, but she's still growing and so we need to wait as long as possible for that. So she had to get a back brace. Poor thing it was really tough on her. But as with everything else, her strength and courage prevailed and she just took it on like she has every other challenge. It's pretty uncomfortable and she has to wear it 23 hours a day for the next year to two years. It's a hard age for her to had to take something on like this - but she'd doing well with it. As always, we are just so proud of her.

Meg has also continued her horseback riding lessons. She's really loving that. Last week she learned to ride using a saddle and was able to steer with the reins. She loves it. She is such an animal lover.

Meg is really doing great at school. And she's been so social this year as well. Awesome news for us all. She's riding a regular bus and that makes her so happy.

Next week is scan time again. Ugghh I am just not ready to even think about it. But it's here already. Please pray that there has been no additional growth in the brain as we don't want to have to put her on chemo or more radiation again. She's been feeling sort of yucky lately and we are hoping it's just a flu-bug and nothing else. It's so hard to worry like this whenever she complains of a stomachache or headache - your mind just races.

We appreciate you checking in and hope you'll keep Meg in your thoughts and prayers next week.

Love,
Shannon

Saturday, July 23, 2005 9:27 AM CDT

Hi all -

We hope this journal entry finds you all doing well. There is an update to Meg's recent MRI report. And it's a bit of mixed news.

Dr. Brandt spent some time reviewing her scan with the radiologist and the radiation oncologist and they have concurred that indeed everything in the spine has improved. So this is still a big YEAH!

There are a few spots in the brain that at this time have shown that they have grown a bit. So progression in the brain. And Dr. Brandt says and to tell the truth I don't know what, if anything, we should do about that.

One of these lesions is in the optic chiasm and so we have to worry that it progresses too much more that Meg will have vision problems. But surgery and basic radiation really isn't an option for this spot.

And at this point she is not symptomatic from any lesions in the brain. Her appetite is the best it's been in a long time. She's mobile, she's active, she's not having headaches, her vision is good. So what to do?

This tumor type is really known to go through periods of activity and then dormancy. Since we didn't really hit these with radiation last year they have really remained stable for some time. We are hoping that this slight progression is stopped and that they will stabilize again between now and her next scan, in 3 months. We will watch and see at this point. We told Meg she deserved a good summer and we plan to give that to her since last summer was just so crummy for her.

If in 3 months these spots show progression again, or if she gets symptomatic between now and then we'll figure out a next step. We will spend this time being present in the moment and researching what other options we have for her should we need them.

We think that we are still on a very good path with the polyICLC protocol and we are going to maintain it. Perhaps it just needs a bit longer in the brain. Who really knows? It's a mystery.

I'm bound and determined to not get freaked out about something that I really have no control over. I am trying to give up the fear of what CAN happen over the next few months because that fear and worry just paralyzes us all.

So truthfully, we are celebrating a good report in the spine and we are proceeding cautiously with a wait and see approach in the brain.

Dr. Brandt said he even felt confident about Meg's spine scan to go 6 months before taking a look at that. I was not so willing to give up the 3 months scans. She tolerates them very well and I don't want to take any chances after 1 good report. Maybe if there's more regression in the spine next time we'll be willing to change the scan protocol. But not now.

Thanks for checking in on us and keeping Meg and all the other kids battling brain tumors in your thoughts and prayers.

Our love and good thoughts go to all the Camp Sunshine families.

Sincerely,
Shannon

Monday, July 11, 2005 1:29 PM CDT

Dear all -

Preliminary MRI report is finally back. It took some "hounding" of the doc since he's up in Bloomington at Camp Coco - but he did call me back to relay the results he got today from the radiologist.

First of all - things in the spine look overall much better. The thoracic spine is very improved and basically Dr. Brandt said that all the lesions (tumor spots) in the spine look smaller and better. So that's great news.

Secondly - there are no new lesions anywhere in the brain or spine. Again very good.

Thirdly - there is one spot of question in a specific area of the brain. The radiologist said that it may be slightly bigger from the last scan. Dr. Brandt says he's not sure what to think about that - and that he wants to review the scans personally with the radiologist to confirm that reading. He said it's really hard to measure growth this small. The plan is for him to review the scans when he gets back from camp next week and we'll talk about this again next week. But he said if there is growth, it's slight and that because she's doing so well clinically we may only watch it closely at this point.

Overall Dr. Brandt said he's happy with this report. We would have liked the spine report with a stable brain report to be super happy as well. I think we take this as a step in the right direction nonetheless. The spine is the most concerning part of Meg's illness so we are definitely thrilled to have news that it's improving.

The kids are up at Camp Coco for the week and the nurses and Dr. Brandt reported today that they are having a good time already. Meg put some reddish (temporary) highlights in her hair just for camp and Nicholas got a Mohawk. They wanted to stand out a little at camp. Meg's hair is too dark to really get the result she wanted. But she had fun playing with it anyway.

Thank you all for your continued thoughts, prayers, and kindness throughout our journey - especially during scan weeks like this one. Your guestbook entries the past few days helped us all stay calm as we went into the MRI and while we waited for the results. Now we wait just a little longer to talk to Dr. Brandt again regarding that one spot on the brain.

Sincerely,
Shannon

Tuesday, July 5, 2005 6:15 PM CDT

Hello all,

We hope this journal update finds you all doing well and having a nice summer. Things are going very well for us.

First of all we want to ask you all to keep Meghan in your prayers this week. She has an MRI this Friday. This will be the 6 month mark since starting the immunotherapy. We are hoping to find that this has helped keep everything at least STABLE for her. Since it's been almost one year since finishing her radiation therapy - this is a bit of a milestone scan for us. Please keep her in your thoughts and prayers.

We went to Camp Sunshine in Maine last week. It was really a wonderful week for us all. Forty-one brain tumor families were there to spend the week together. The week for all the families was funded by the Children's Brain Tumor Foundation. And it was great for Meg to get to meet so many other brain tumor patients. Nicholas was so sad to leave - he was sobbing Friday night. The kids were kept busy with lake activities, swimming, mini golf, arts and crafts, and so much more. They had fun evening activities for the whole family too. We all made some new friends that we are looking to talking to more over the years. We miss you all already!

One afternoon we had some free time and we were able to rent a pontoon boat and head out on Lake Sebago for the afternoon. Another family from the camp joined us and it was so much fun.

We were also able to spend a day in Portsmouth, NH before flying home. What a cool place. I'm loading up some new pics from the vacation so be sure to check them out.

Next week the kids are off to another adventure as they head back to Camp Coco. They are really looking forward to heading back. Last year was such a hard time for Meg at camp and for her nurses and counselor. She's really looking forward to getting around better and participating in all the activities.

Right before vacation we visited the stable where Meg will be taking horseback riding lessons. She's supposed to start this week. She is really excited about it. She picked out the horse, April, that she's hoping to ride. It looks like such a wonderful place. And it's supposed to be great therapy for her.

Please have a great summer and we appreciate that you continue to check in on Meg. And please remember her on Friday a.m. when she has her MRI.


Sincerely,
Shannon

Thursday, June 9, 2005 7:37 AM CDT

Hi all -

Summer is well underway here. Meg is continuing to do so well. We have her next MRI scheduled for early July. We are all praying and hoping for another stable report.

Meg got her trampoline wish granted a few weeks ago. At first the jumping on it was tough for her, but it's getting better. The kids are really enjoying it.

The kids have both been swimming a lot. Another good fun therapy activity for Meghan. She's hopeful to be able to switch out her leg braces for some less restrictive ones before school starts up again.

Meg is being a lot more social these days as well. She told me that last summer was just the worst of her life and she's hoping to make this one the best so far. Me too.

We head to Maine for Camp Sunshine the last week of June. We are all looking forward to it. Then in July both kids are heading back to Camp Coco. Should be a lot of fun for them this year.

Thanks for checking in on us. We hope you are enjoying your summer as well. Check out the new pics of Meg on the tramp.

Sincerely,
Shannon

Monday, May 16, 2005 8:16 AM CDT

Hello everyone -

Wow it's been some time since I updated - my apologies to all.

It's definitely ok to assume that no news is good news. Things are continuing to go very well for Meghan and the rest of us.

She got her new hot pink crutches and she's getting along so well. She hasn't used the wheelchair in a long time. She looks and acts so much more like her old self too.

Meg is still taking the immunotherapy shots twice a week. And doing physical therapy regularly as well. She's hoping to be able to take horseback riding lessons and swim a lot this summer.

I've added a new pic of Meg and Nicholas at Nicholas' first communion earlier this month. You can see how much healthier she looks now.

We are planning to go to Camp Sunshine in June. This camp is in Maine and we are going the week specially dedicated to brain tumor families. I'm sure it's going to be lots of fun for us all. We are looking forward to meeting some of the friends we've met online in some of the pediatric brain tumor support groups.

Thanks so much for your continued thoughts and prayers.

Sincerely,
Shannon

Friday, March 25, 2005 5:01 PM CST

FINALLY GOOD NEWS!!!!!

Preliminary results from the MRI show at least stable and perhaps even a little smaller. The spot that was of concern in December is much less bright on the MRI and really does look likes it has reduced in size.

This is the best news for us right now. We thank you all so much for your thoughts amd prayers.


So now we continue as planned with the immunotherapy, physical therapy and three-month scans.

Thank you all again for shoring is up yet another time.


Sincerely,
Shannon

Monday, March 21, 2005 12:53 AM CST

Happy Spring to you all!

Well this week is MRI week - uggghhh. This will be the first MRI for Meg since starting the immunotherapy. We are all a little nervous. We aren't really expecting any major news, but we really, really need to hear that everything is at least STABLE. That's our word this week - STABLE. Please send Meg as many prayers, good thoughts, and positive thinking as you all can. We are committed to doing this therapy for at least 6 months and a STABLE report will help us all know we are on the right path. I'm shamelessly asking that you please share this with your prayer groups, friends, and families. The more we have thinking of her - the better.

Good news this week already though. Recently Meg started taking a lot more steps without her walker. She is motoring all over the house without it and it's wonderful to see. Clinically that makes us very hopeful that things are heading in the right direction for her. It has given her a lot more bounce in her step as well. Her physical therapist is very encouraged by her progress as well. We think she'll be retiring the walker and moving to crutches very soon. Yippee.

Meg has been much more social lately as well. I think she's just overall feeling stronger and better.

Meg is really excited to have been selected to be in the the All City Middle School choir. They'll be performing as a big group next month. She also worked very hard this month at school on the 6th grade's Renaissance Faire. She was in a skit that performed educational information about Leonardo Da Vinci.

Hockey season is over. Nicholas' team did very well this year and we all had a great time with the team. Soon baseball will be starting. Nicholas is doing very well at school as well. He really just loves to learn so much. We are currently redecorating his room. "Finally" as he would report. He's going for an airplane themed room. It should look very nice once finished.

We are hoping to go to Maine this summer for the Family Brain Tumor camp. We were scheduled to go last year but had to cancel because Meg was doing daily radiation. This year is a different year and I so hope we'll be able to make it.

As always, thanks so much for your continued thoughts and prayers. Keep Meg in mind on Friday, March 25.

Sincerely,
Shannon

Wednesday, March 2, 2005 10:46 AM CST

Ok sorry, sorry, sorry for not updating sooner. I know it's been a long time when I start getting emails and phone calls telling me to get this updated.

For the most part, though, no news is good news. Things are overall going very well. Meghan is taking her shots twice a week and is handling them very well. We haven't been home for a weekend in more than a month and we are all ready to have some downtime at home.

We went to Destin, FL in early Feb. to see Grandpa Bob and Grandma Terry and Aunt Shannon, Uncle Bill, and Brennan. That was a really good time. Meg got an icky cold while we were there - but we stayed pretty busy for the whole long weekend. We all had a great time going to the Naval Air museum, and shopping and eating seafood. Meg and Nicholas really enjoyed the visit.

Then we were off to Wisconsin for a hockey tourney. Meg got to go visit her friend, Hannah, again and she was thrilled to see her.

This week, Meg is participating in a Renaissance Faire at school. The project is being put on by the whole 6th grade and they've been working for weeks on it. She's so excited.

Meg is still getting around very well. She is able to stand a little bit more without support. She is still doing physical therapy. She is really hoping to be able to walk by herself by June. I hope she can reach that goal.

I'm still pushing Meg to be more socially active. She really needs to spend more time with her peers and less time by herself. But that is so hard to accomplish because she really has to be proactive about it.

Thanks for continuing to check up on us. Meg will be getting her next scan in March. We are hoping and praying for a stable report!

Thanks,
Shannon

Friday, January 14, 2005 8:33 AM CST

Happy New Year -

We hope all of you had a wonderful holiday and are having a great new year so far.

We had a wonderful Christmas and really enjoyed having time off from school and work together and spending extra time with our family.

Meg had her MRI on Dec. 28. We had mixed news on that one. The tumors in the spine look better and have decreased some so that's fantastic for us. The tumors in the brain (where we didn't do radiation) actually looked like the increased in size a little. While we didn't really want to hear this news, it didn't set us off into panic mode just yet. At the time we knew we were just days away from getting the immunotherapy drug in hand and because that was the course of action we'd chosen we wanted to stay on that path for the time being. There is a chance that if the next MRI shows more growth that we can do some more localized radiation. But it's in an area of the brain that we can't do too much to it, without causing damage.

Meghan started her immunotherapy yesterday and we are just thrilled. We are praying that this drug does as we've hoped and at the very least stabilizes all the tumors in her body from getting any bigger. There are some patients with tumor-types like hers that have been stable on this drug for a very long time and we are hopeful that we will achieve this as well. Unfortunately, we also have to worry about availability of this drug long term. There are limited supplies of it and if it starts working and we can't get anymore than well we won't know where to go. But that's one of those "cross that bridge" when you come to it kind of things I suppose.

The immunotherapy is given by shot two times a week. Meghan wasn't thrilled with the shot part, but after the first one was done she said that she thinks it won't be so bad and she'll be able to take it. She's a really strong girl. Every night before she goes to sleep she is imagining this immunotherapy drug is traveling to her tumor locations and making them smaller and smaller.

Meghan had her 12th birthday on Jan 2. It's hard to believe she's 12 already. But we are so happy that things are going so much better for her now. She just overall seems so much happier these days. She loves the freedom she now has with her walker. She achieved her goal of taking it to school with her and now she uses it almost exclusively. She only uses the wheelchair to go long distances. And this has given her more freedom to be more social as well. She even took her walker outside last weekend to play in the snow. Many people are noticing the difference in her mood and it's refreshing.

Nicholas is doing well too. He is still playing hockey and is thrilled to report that he finally scored his first goal last weekend. And in an important game, too. He is so sweet to Meghan (most of the time). Just the other day, Nicholas and I were watching a little girl playing in the doctor's office and she was climbing all over stuff. Nicholas looked at me and said "I wish Meghan could do that. I can't wait until she can again." He's an amazing kid and it's hard sometimes when I sit back and think about what all this does to him as well. Last night he even told Meghan that "I think your shots hurt me more than they hurt you." LOL. Of course she replied with, "get a shot in your leg first and then you can decide if that's true!" LOL.

Since Meg is feeling better we are so excited to be able to travel a little bit more than we were last year. The kids are thrilled that we have made plans to go to Florida next month to visit Grandpa Bob and Grandpa Terry. We booked the trip this week and Nicholas asks several times a day when we'll be leaving. We also get to go to Wisconsin again in Feb. for a hockey tourney and Meg will get to see her good friend, Hannah, again.

As always, thank you so much for all your support, prayers, and good thoughts.

Sincerely,
Shannon

Monday, December 13, 2004 7:37 AM CST

Happy Holidays All -

Things here are going very, very well. Finally we have seen some good progress for Meghan as far has her mobility goes. Just a week and a half ago Meghan took her first unaided steps with her walker. And now she is using her walker around the house and at other homes to get herself around. She is thrilled with the new independence and being able to get herself out of bed, to the bathroom, and to pretty much anywhere else in the house has been so wonderful for her. You can see her happiness in her face and in her mood. (Though she still throws her preteen fits from time to time!) She still can't stand without support -but hopefully continued physical therapy will get her there as well.

It was such a surprise to me as well, as I had gone on a long weekend with some girlfriends to Vegas and when I came home Meghan walked to me to greet me hello. I pretty much have been tearing up daily since then. It's just been wonderful for us all and we've all agreed that Christmas came early in our home.

It's also amazing how much more willing Meg is to go to her physical therapy appointments now that she can actually SEE the results working. She started water PT a few weeks ago. And that has been really good for her too. She's really able to get around well in the pool and it's fun for her. She works a whole new set of muscles in that session and she's definitely tired afterwards.

I started noticing a few weeks ago that her spine seemed somewhat curved. Whenever she started radiation we knew that she had a bit of sciolosis, and I wanted to make sure that it wasn't worse. I was worried that if we didn't take care of her back then her ability to stand alone and walk even more could be hindered. So we saw the orthopedic specialist last week and he confirmed that she does have some sciolosis and kyphosis (hunched back) but that he thought that it wasn't at a point to treat with a back brace of anything. He directed Meg's physical therapists to do more strengthening of her back muscles so that she can hold herself up better. The sitting in the chair for seven months definitely contributed to this. Meg has been very conscious of improving her posture since talking to this doctor.

However, this doctor did recommend that Meghan get some custom braces for her lower legs. She was wearing some temporary ones and he said that he thinks it's a good idea to help keep her ankle flexible since it is so tight whenever she tries to move her foot up. Meg is actually excited about the braces because she's hopeful that they will allow her even more walking function. She also got to pick a special picture to go on a section of the braces and she picked a Unicorn. She gets her braces on Dec. 27th - until then she's going to continue to wear the temporary braces throughout the day. You really cannot even tell she has them on.

We are hopeful that the positive steps we are seeing means that the radiation has continued to work and decrease the tumors in her spine. We'll know more on Dec. 28th when Meg goes for her next MRI. We ask that once again you continue to keep Meg in your thoughts and prayers as she goes into this MRI. We'd all love to hear REDUCTION, REDUCTION, REDUCTION! At the very least we'll take stable. But I'm doing the reduction mantra to myself all month.

We think we are much closer to getting the immunotherapy drug that Meg is going to start taking for maintenance. We've (and our doctor's office) has had to jump a lot of hurdles to get this as an option and we are certainly hopeful that it will help keep Meg stable for a very long time. We are encouraged that it is non-toxic and in some ways - good for Meg. Although we hate that it has to be administered via a shot. :( Meg said she's ready though and she's willing to do whatever she needs to do to get back to a normal life.

School for Meg continues to go well. Her goal is to take her walker back to school after the holiday break and use it at least in the classrooms to get around. I think that's a great goal.

Thanks so much for all your support throughout this year. We hope that this holiday season finds you all blessed, healthy, and happy. We thank god for you all every day.

Sincerely,
Shannon

Tuesday, November 16, 2004 9:27 AM CST

Hello all -

Things here are moving along pretty well. The kids are very busy with school and homework. And Nicholas is keeping us all busy with his hockey schedule.

Meg is doing pretty well. She continues to make slow progress with physical therapy. We are expecting to start the experimental drug therapy sometime later this month or next month. We are hopeful that this new therapy will at the very least continue to hold the tumors in her spine and brain stable. Of course we alway hope and pray for tumor reduction as well.

Meg still struggles with being social. The addition of the wheelchair makes it so much more difficult to do things with her peers. This is obviously an age where kids "notice" differences. And although she, for the most part, handles it very well - we have to stay on top of her to actually do things with kids her age and outside of the house.

Unfortunately Meg broke out in the shingles last week. I was out of town on business and the poor thing was really uncomfortable. She didn't get too many spots of rash - but she said it hurt a lot. It's pretty much cleared up now.

The kids are looking forward to the holidays. I think Meg is especially looking forward to a break from school. She likes school overall, but again it's a thing where actually being there just takes so much physical effort on her part.

Thanks for checking in on us.

Sincerely,
Shannon

Wednesday, October 6, 2004 11:16 AM CDT

Hello all -
My apologies for my delay in posting yet again. I actually got a phone call last night and got spanked because I've not been more regular. LOL. Well it worked and here I am.

First of all Meg's MRI last month went well. The results were somewhat positive for us. There was no tumor growth in her spine or brain. The report showed that there was reduced edema (swelling) in the spine - so that is definitely a positive.

At this point Meg is off all treatment. She's still recovering from her radiation and chemo induced exhaustion. And school definitely makes her tired too. But she's doing pretty well in school and seems to be making friends and getting active. We are all thankful for that.

We are hoping to start an a new drug therapy that is non-toxic and that will help keep her stable for much longer this time. It would be great if this new therapy went ahead and just erradicated to tumors for us too - God can you make that happen for us please?

I'm going to be posting some more pictures today so be sure to check them out. Meg sends her thanks for all your good thoughts and prayers.

Thanks,
Shannon

Wednesday, September 8, 2004 9:09 AM CDT

Hello all again:

Before school started we had a great visit to Wisconsin to see Meg's friend Hannah and her family. It was really a lot of fun. The drive wasn't bad at all. Meghan and Hannah had fun playing in the house. And we all took a beading class together. We went to see the Princess Diaries 2 as well. They all enjoyed that. The boys had fun too going to a Brewers game. Meg came back from that trip much happier than she had been in some time. Thanks so much to Laura, Mark, Alicia, Hannah and Colin (oh and the dogs too) for such a wonderful trip. It was a nice getaway for all of us.

School is back in session. Meg started middle school two weeks ago and it's been a whirlwind for sure. For the most part she's enjoying being back in school. She has her own wheelchair bus to ride back and forth. She doesn't like the morning bus at all because it's in need of new shocks or something. But they assure her that they are getting a different bus for her. She hates the bouncing.

Meg has a full time aid helping her get around at school. I think that has taken some getting used to. But that seems to be working out quite well. At first, Meg was just like any other 6th grader and was totally overwhelmed with the middle school experience. Lockers, changing classes, and lots of homework does take some getting used to. Add a wheelchair into an old school and it's a challenge. But they have a lift and the school has been so great with making this work for everyone. Meg is making friends and she seems happy. She has to spend a lot of time at night on homework and that doesn't make her happy. But she does it without complaint.

We found a wonderful CNA to meet Meg's bus afterschool and help her into the house, get a snack, do her stretches, etc. This setup is working very well for everyone. Meg is so tired afterschool that she usually does her stretches and then goes to sleep for a quick nap.

At this point we aren't doing any treatment. We continue to see progress from the radiation. Meg can now stand for a short time using a walker. She's not ready to take any steps, but she can crawl now. It's super hard work for her. But more and more she is getting control of her lower body. She's able to support more of her weight when transferring from her wheelchair to bed, etc. And we take all of that as a good sign. She had several weeks of nausea that was no fun. But that as well seems to be getting better. She is still doing physical therapy 3x a week. Her therapist is very impressed with her determination and progress. As much as Meg hates the hard work, she does it all with the goal of walking again.

Next week is MRI time again. So please continue to keep Meg in your thoughts and prayers and pray specifically for lots of reduced tumor in her spine.

Thanks for checking in on us.

Sincerely,
Shannon Heisler


P.S. Earlier this summer, Meg's friend Hannah gave her a prayer pager. The idea behind the pager is that whenever you think of Meg or say a prayer for her - you can page her and let her know. Since she has so much hard work ahead of her I thought maybe some of you might like to page her from time to time to cheer her on. I don't want to post the number on a global website - but if you know our email address, email me and I'll send you the number.

Thanks again!

Wednesday, August 11, 2004 9:15 AM CDT

Hello again,

Things here are going pretty well. Meg finished her radiation treatments 2 weeks ago. Yippee. Another milestone for us. She also completed the second round of her chemotherapy and is on a break from that.

She is doing a lot of physical therapy with the hopes that she is on her way to getting her leg function back. She can make more movements with each passing week. And that is encouraging for all of us. She of course wants things to happen more quickly. But we told her that only happens in the movies.

Emotionally Meg has been doing much better. She's been playing with friends a lot more and has even been going swimming a bit. It's nice to see that smile back. There are still rough days and days where she's just mad at the world. But lately there are more better days than bad. And that's helped us all a lot as well.

School is just around the corner. Thankfully the new middle school that Meg is going to is helping us a lot so that she can get as normal as an experience as possible. And Meg is really excited about school. I can't believe she's heading to middle school.

This weekend we are heading north to visit Meg's good friend, Hanna. Meg is just beside herself with excitement. I'm hoping the car ride isn't too much for her.

Thanks for all you continued thoughts and prayers. We appreciated every one of you.

Sincerely,
Shannon

Wednesday, July 21, 2004 9:28 AM CDT

Wow it's been a long time since I updated. The kids have gone and returned from Camp Coco. They had a nice time.

Meg had some times where she didn't feel well at camp. But her nurses took really good care of her. She continued to run a fever off and on throughout the week. That had us all a little worried. We tested her for infections, but nothing indicated that was the case. It was hard for her to be at camp in the wheelchair, and it wasn't the same experience as last year. But she says she's really glad she went and she did have some fun.

As a result of the fevers, our doc wanted to do an MRI of the brain to see if there was some reason there that could be causing the problems. We did that MRI on Monday of this week. And the results were no change in the brain. This news was good for us and we are all breathing just a bit easier.

Meg has 4 more radiation treatments to go. She's really happy to be almost done with this phase. And hopefully the next phase will be tumor stabilization and reduction and return of function for Meg. She gets very frustrated being in the wheelchair. She wants to see results right now. And I can't blame her at all.

She's also still on her second round of the chemotherapy. And she's really tired much of the time. She's starting to worry about how she'll do in school in the coming weeks. Poor thing, I wish she didn't have to worry about this stuff at all.

Last night our community lost a great person. A friend of our family and Terry's godfather, Jim Brahler, passed away from a brain tumor. The loss will be felt by many. He was dear to our family and we will all miss him. Please keep his family in your thoughts and prayers.

Thanks for checking in on us and thanks for all your great thoughts and prayers.

Sincerely,
Shannon

Monday, July 5, 2004 10:43 AM CDT

Greetings again,

We hope you all had an enjoyable holiday weekend. I apologize for my delay in updating this last week. Sometimes it's just difficult to find the mindset I need to recap what's been going on for us here.

For the most part things are the same here. Meg is continuing to do her daily radiation treatments. It's still very hard on her to lay on the treatment table flat on her back. We try to get the treatments done as quickly as possible.

Her blood counts have started dropping due to the extended radiation exposure to her bone marrow. Her white counts and her platelet counts are very low. They can help up the white counts with neupogen shots, but really we just have to hold treatment if the platelet counts drop too low. We are hoping that the extra day over the weekend is giving her body enough time to help bring the numbers up a bit. We don't want to delay finishing this treatment if at all possible.

We weaned Meg off her steroid the last week. Even though we tried to wean her slowly, this past wekeend she stilled showed some signs of withdrawal. Poor thing had a fever, muscle aches, and she's been very lethargic. She also started her chemotherapy again - so she's been sleeping a lot this weekend. She'll be on the chemo for another 5 weeks.

At this point Meg is still planning to attend Camp Coco. She's very nervous about going, but she desperately wants to attend. I think she's worried about being away from us, but I know she's also worried about how her camp friends will receive her. Last year at camp she was off treatment and able to do everything there. This year she's going back on treatment and in a wheelchair. That's pretty scary for her. Sometimes it really gets her down when she watches other people do things that she can't do anymore.

On a positive note, we are seeing subtle signs that radiation is actually helping Meghan though. She has been able to move her feet a little bit more. She said she's feeling tingling again in her legs. And her physical therapist says she thinks that Meg seems to have more control in her trunk. I guess for us we are hanging on this improvement and hope that we'll continue to see more in the weeks/months following treatment.

Thanks for your continued prayers and good thoughts.

Sincerely,
Shannon

Thursday, June 24, 2004 3:30 PM CDT

Hello again -

Things here are progressing along for us. Radiation has been hard on Meg this go around. It's very difficult for her to lay flat on the table for the treatment. Even though it doesn't take long - it's very uncomfortable for her.

Last Friday she was to have her port accessed to get her blood counts checked. Due to the weight gain from the steroids, it was very hard getting the port accessed. This made Meg really uncomfortable and upset. She didn't even get to do radiation that day because it just escalated from there.

Last weekend we went to Nicholas' baseball game, and then to watch my niece's softball tourney. Meg had a good time. Though it's hard for her sometimes to be around kids her age because she can't just get out of her chair and play with them like she wants to.

Monday Meg's good friend came back to town for a visit. Meg has loved having her around again. They've been to see 2 movies, and tomorrow evening they are planning to go to dinner together. It's nice to see Meg happy again.

Today we tried Meg's port again, and this time we were able to get it accessed and get the blood drawn. This was a big relief for everyone. Radiation has gotten better every day this week. And at today's appointment she was able to lay on the table for the entire treatment without getting up once. Hopefully this is a sign for us that things are starting to look up for us again.

Meg and Nicholas are both planning again to attend Camp Coco in July. Meg is really looking forward to it. She's apprehensive because this year she'll be less mobile due to the wheelchair. But she's going to have her own counselor. And her oncology nurses are really going the extra mile (thanks Justine and Mel) to make sure that Meg has a great time.

This coming weekend is the local Relay for Life. Meg loves going every year to do the survivor lap and to hang out at the campsite with the other oncology kids.

Thanks to you all for your continued thoughts and prayers.

Sincerely,
Shannon

Monday, June 14, 2004 11:32 AM CDT

Greetings again,

We hope this week finds you all doing well. Things are going fairly well here for us.

Meg started her full-spine radiation last Thursday. The setup was a little scary for her, but we are now all setup to go 5 times a week for 28 sessions. We have 2 down! Hopefully soon we will start seeing some benefit of this treatment and Meg will start getting some function back in her legs.

Her mood goes up and down with the day. But I think the same could really be said for all of us in our house - I'm on edge sometimes, Nicholas feels totally left out sometimes, etc. - all in all it's just a difficult situation to be in. Learning to cope with Meg in a wheelchair is hard, and worrying about the efficacy of this treatment is even harder.

We had a busy, but nice weekend. We were back down in the St. Louis area for my cousin's wedding. It was so wonderful to see the whole family. And everyone had a great time. Meg was down when it came time for the dancing. But she pulled out of it quickly enough. She was worn out yesterday though.

Thanks for your wonderful messages in the guestbook - it boosts all of our spirits.

We appreciate your wonderful thoughts and prayers.

Sincerely,
Shannon

Thursday, June 10, 2004 4:10 AM CDT

Back home!

We made it home from the hospital last evening, and according to Meg it was about time. It's just never any fun being in the hospital and this visit didn't even seem productive for any of us as there really was no progress made in Meg's treatment.

Things again went full circle after we met with the SLU radiation oncologist. He really felt that the cyberknife radiation was not going to be enough for the amount of tumor Meg has in her whole spine. And he felt that the only way we are going to get her some relief and possibly get her back on her feet is with whole spine radiation.

It took some time for us to get our arms around that. But the neurologist, Dr. Geller, really made it more clear for us when he told us that he's very concerned that if Meg's lack of sensation goes any higher than it is now then we are could be looking at respiratory difficulties. And that isn't anywhere we want to go. So we are home now and going back to radiation today with a change in course from the cervical spine radiation to whole spine radiation. Hindsight being 20/20 - this is where we probably should have been all along.

Long term side effects for whole spine radiation are more scarier than what we were looking at before - but we are in a different place now and we don't have the luxury at this point to worry about that far down the road.

Meg did end up having a great roommate at Cardinal Glennon. And for Meg I think that it at least helped pass the time a bit. Meg continues to just amaze me and fill me with so much pride. Her roommate was in the hospital for a severe broken arm - and Meg was so worried about Caralyn and felt so bad what she was going through. It was just so touching. We hope that Caralyn's family gets to take her home soon and that she has a great summer. It was wonderful having you all in the room with us.

Thanks everyone for your thoughts and prayers. We are exhausted and still not resting well. But we are so thankful to be home and hope that soon Meg will be feeling better.

Sincerely,
Shannon

Tuesday, June 8, 2004 11:39 AM CDT

Greetings all,

Things have been really busy here and have changed rapidly. Earlier this week Meg's walking became even worse and she really could not put any weight on her legs much at all. At one point in time she was trying to roll backwards with her wheelchair and she couldn't figure out why she couldn't get it back - answer was that she was rolling over her own foot and she didn't even know it. :(

A call to our doctor Monday morning prompted an unplanned visit to the neurologist. The neurologist examined Meghan and found that she definitely was showing signs of increased spinal cord compression and problems. She could not feel a sharp poke anywhere on her legs and up her abdomen. He was very concerned by this and suggested that we not wait any longer to get her MRI. From his office we went over to the oncologists office with the idea that we would be getting a scan at that time. Our doc though felt that, based on the call from the neurologist, we needed to get Meghan to a children's hospital where she could have access to a neurosurgeon should she require surgery to relieve the compression of the cord. We had a big discussion with the doc as to what we needed to do. Then we went home, packed and headed down to Cardinal Glennon Children's hospital in St. Louis.

This was our 3rd 'emergency' trip to this hospital and at least experience made it less scary for us all and we certainly we able to pack better then we've done in the past. LOL.

We spent way too long in the hospital ER last night telling and retelling Meg's history to every resident that came to visit us. They called in the MRI tech on call to get a scan of Meg's spine. Unfortunately the MRI machine was broken and we waited and waited and waited and yet we did not get a scan last night. Then they decided to just get the scan at the adult hospital next door early this morning. Sooooo they admitted Meghan for the night and then we went back to the ER to wait for her room to be ready. In the end, we spent more than 5 hours in the ER last night. Ugggghhhhh. Terry, Meg and I were having a contest to see who could last the longest without getting irritated and snappish. I must say we all did pretty well - though there were moments when I wanted to let my head spin and just go off.

But finally we got into our room and thankfully she's doesn't have a roommate. Whew - I didn't want to subject the to Meg's snoring. LOL.

Overall Meg and I slept pretty well considering how hard it is to rest in a hospital. Why is that anyway? We took her over to SLU for her MRI this morning. And then the neurologist and neurosurgeon came in to talk to us about the films. Unfortunately the news wasn't great for us. They said that the tumors in her spine from top to bottom are definitely causing issues with the spinal cord. They do not think that there are any surgical options that will help her with any of her symptoms or deficits. At the time they were recommending that we go ahead with full spinal radiation.

There was a touch of good news which was that the one area of the spine (cervical) that we had been hitting with radiation had shown some improvement - so this at least encourages us that radiation can actually do us some good. Full spine radiation can have some serious side effects and long term effects - but they believed at the time it was our best option. This news did sadden us a bit because we've always been steered away from full spine radiation.

Ok having said all that, things have changed since. The neurosurgeon came back in and said that they had been discussing Meg's options further and they believe that she's a candidate for cyberknife radiation and that will be a much better option for her because it is highly targeted radation and we won't have to expose the entire spinal cord. Just the areas that are being affected.

At this point, we are still in the hospital. We are expecting to stay no more than one night. But it's possible that we'll be staying in the area for the next few days if we can get the cyberknife radiation started while we are down here.

The past 24 hours have been a total roller coaster. Meg is in wonderful spirits and is sitting here in her room eating fruit and cottae cheese. Her grandparents and little brother came for a visit. And that's made her happy. The child life specialist brought her some play-doh to keep her occupied.

Keep sending Meg your good thoughts and prayers - we appreciate them all.

Love,
Shannon

Wednesday, June 2, 2004 8:43 AM CDT

Hello again,

Well the long weekend is come and gone. We had lots of visitors over the weekend that really helped boost Meg's spirits - Grandma Bean, Aunt Vikki, Jordan, Grandpa Barry and Grandma Kathy - all were at our place at one time or another over the weekend. I know that we all enjoyed visiting with them.

Friday Meg had her radiation appointment and physical therapy. She has some days where she likes PT and some days where she really hates it. After treatment though, Meg got to do a bit of shopping and go out to dinner with her Grandma Bean while Terry and I took Nicholas golfing. Then Vikki and Jordan came to spend the night and Meg had a lot of fun hanging out with them. Especially Jordan.

Saturday we all went to Nicholas' baseball game and he made his first double play, yeah! After that we had a cookout with Terry's family to celebrate Grandma Bean's 60th Birthday. She had a couple of surprises at the party and it was a really good time.

On Sunday, Meg and I went to see a movie. We just love to watch those chick flicks together. At first I was concerned about getting Meg in and out of the theater by myself, but we worked it out. Sunday evening we spent some more time with Grandma Bean.

Meg finishes her chemotherapy this Friday and we are all so ready for the break. She will still have radiation for another two weeks. She is getting her wheelchair today and I think that we are all finally ready for this step. We certainly hope that this is temporary. But I know that Meg really wants to have more freedom of her comings and goings. I hope that this provides that for her. Last night she went down the street to visit a friend. I think it was her first outing without parents in weeks. And I know she was happy about it. As much as we have no problem pushing her in the jog stroller or in the chair - nothing compares to her being able to do some of the things she enjoyed so much before things got bad again. Hopefully this break from chemo will give her a bit of time to regain her strength and her walking will improve some.

School is officially out now for the summer - and I know that Nicholas is really excited about it. He's going to be playing baseball and hockey for much of the summer.

Both Meg and Nicholas will be heading to Camp Coco again this year. They are looking forward to it - and I think Meg is really looking forward to seeing some of her old friends.

Thanks for keeping us in your thoughts and prayers.

Sincerely,
Shannon

Tuesday, May 25, 2004 8:05 AM CDT

Hello all,

I'm sorry it's been so long between journals - it's hard sometimes to find the time and the emotional strength to write a journal entry.

Radiation is going ok. One upside is that it's fast and Meg doesn't feel a thing. Meg has had 4 treatments so far. She had to miss one last Thursday because she was in so much pain in her back that she couldn't lay on the radiation table at all. This was one of the worst days we've had to date. She was so uncomfortable and upset. She got some relief from a bit of pain medication that evening and things turned around at that point.

The Dr. also was very concerned on Thursday because Meg's walking was so bad. She really couldn't walk at all. It's as if she's lost complete control of her legs from the shin down. That part of her leg and her feet are cold all the time, but she says she doesn't feel cold. And sometimes they look purple. All of this seems to be due to the decreased circulation to this area. We're not sure what kind of permanent damage is being done and this means for Meg's long-term recovery.

Her docs doubled the steroid she has been taking in the hopes of helping with the back pain and the walking. The back pain is much, much better. We aren't seeing a whole lot of signs of improvement in the walking. She's due to finish this first round of chemo in 2 weeks and hopefully she'll be able to recover some during that time. If things get better then, we'll know that the problems she's having are more related to the treatment than to the disease.

It has been so difficult for everyone to watch her go through this. It's so hard to believe that she walked into the MRI on April 8 on her own power and in the time since the recurrence diagnosis things have changed so much for her.

Meg's spirits seem to go up and down a bit. With the added steroid she's a little bit more on edge. She did get letters from her 5th grade class yesterday and that really perked her spirits up. I know she's been missing her friends a lot. We are planning to take her to the 5th grade talent show and end of year ceremony on Friday morning.

We are so blessed to have Aunt Tina with us to help us through all of this. We couldn't have gotten to this point in one piece without her.

Thanks again for all your wonderful messages, cards, and thoughts.

Shannon

Tuesday, May 18, 2004 7:46 AM CDT

Hello all -

Meghan tells you all thanks so much for continuing to check in on her and for all your wonderful words, thoughts and prayers.

Things at our house are going 'ok'. Meghan had her first appointment yesterday at radiation. This visit was to do the setup work needed to get started. Meghan really likes the radiation oncologist. We all do. He has a remarkable bedside manner and he is really good with her. Watching the setup was really interesting for us, but of course it was sad too. She starts her daily treatments (5X a week) today and she's going for 23 treatments. Hopefully this will help reduce some of the symptoms she's been having.

The walking has continued to get harder and harder for her. Her legs just won't do what she wants them to do. Some of this is tumor related, some is probably related to her being weaker from the chemotherapy. Hopefully as her body gets used to it and as the radiation gets going, things will get better.

She's not been able to go to school at all. She's getting lots of rest at home with Aunt Tina. I think she really is missing her friends and not being able to go outside and play like the other kids in the neighborhood is really getting to her. I think this has really gotten her down lately. She has been playing with some of the girls down the street and she enjoys every minute that they spend with her. I'm trying to get her to call and invite over some of her school friends for a board game or something, but she seems to think they don't want to play with her since she can't be very physically active. Hopefully she'll get over that soon. Poor thing, we hate to see her depressed on top of everything else. But she certainly is entitled to a pity party every now and then. We just try to lift her spirits as much as possible.

She's been in some pain off and on. It seems when she's done too much or is really tired that her back really starts hurting more. We are trying to keep her comfortable with ibuprofen and tylenol - and giving her a muscle relaxer at bedtime to help her sleep.

Thanks again for all the cards, well wishes, offers for help - it means more to us than we can say.

Sincerely,
Shannon

Monday, May 10, 2004 7:08 AM CDT

We hope you all had a good weekend. We had spectacular weather here this weekend - my mother's day was wonderful.

Meg's MRI last Thursday went well. Basically the scan of her cervical spine showed that there has been no change in the past month in the tumor burden in her spine. However, the doctor really still thinks that due to this one area in her spine that has a lot of tumor in it we should do some radiation. He thinks that there is just so little room left there for any progression that we should try to reduce it as much as possible now. He said that he would only recommend radiating this one area (right above her shoulder blades) and that they would target the tumor site as much as possible to reduce affecting healthy tissue and to try not to injure the spinal cord anymore.

We have a consultation tomorrow with the radiologist. Our doc thinks that we'd keep the dose low and she would probably go daily for 3-4 weeks. We have a lot of questions for the doc tomorrow and after that we'll decide for sure if we are moving ahead in this direction.

Surgery was discussed again, but with the type of disease Meg has it just does not seem that it would be effective in helping at all. And the risks do seem high at this point.

Meg is actually feeling much improved from last week. She's been emotionally happy for several days now and it's such a welcome change. She played with friends a couple times towards the end of last week and she even went to school for a full day on Friday. My sister in law came to visit and help us out while Uncle Mark is out to sea. Meg is really happy to have her here - everyone is.

We had a mother's day cookout yesterday with much of the family and it was so nice to get everyone together.

Thanks for all your wonderful messages - Meg is so thrilled to read them and she said she thinks half the Navy is praying for her. She loves that. Check out the new pic of Meg in her USS Ramage hat. She says thanks all the Ramage sailors and family members for serving our country and she says to keep well.

Thanks again,
Shannon

Wednesday, May 5, 2004 8:05 AM CDT

Hello all -

Things here have been a bit up and down. Meg has good days and bad days. She's been on the chemo now for 10 days and it definitely is making her very tired. She's had some mild nausea as well.

Sunday evening things got a bit worse for her as her walking became much more difficult. Terry and I were both very concerned - and at the time we weren't sure she'd be able to even return to school at all. On Monday she was not feeling well at all. She was having a lot of trouble getting around and was complaining of neck pain, headaches - and she was vomiting and running a fever. We took her into the oncology clinic to check her blood counts for infection.

Seems she had some sort of viral bug - but her counts looked fine. After the visit there she really turned around and started feeling much better.

Both our local doc and the Duke doc thought we needed to do a scan to see if things in her spine had progressed even more since she was definitely suffering from symptoms of cord compression. That scan will be tomorrow. It's possible that the chemo is making things shift a bit and that things just have to get worse before they get better. It's also possible that her spine is progressing more rapidly now and if that's the case we'll need to look into possible radiation for that area or even surgery.

Yesterday was a much better day for Meghan. She was feeling better, was in better spirits, and thankfully she was getting around better as well. It's hard for us to get used to these bad days and it's really hard not to panic when that happens.

Terry has been looking into what types of options there are surgically if we do need to go that route. It's always been something that we've stayed away from because of the risks involved - but sometimes you get to a point when you have to look at it. And that it the same thing with radiation. If we do radiation it would only be to the area in her cervical spine that is causing the cord compression.

It's very different this go around because Meg is older and wants to ask more questions - she wants to be more informed about treatment options, side effects, etc. It's a catch-22 as well, because we want her to know and be involved in the process but at the same time we want to shield her from some of the harsher realities.

Please know all of you that we thank you so much for all your kind words, thoughts, prayers. Meg sat down yesterday for a long time and read all your messages in the guestbook and she was so thankful and in good spirits after doing so.

Thanks again,
Shannon Heisler

Monday, April 26, 2004 12:33 AM CDT

Hello all -

We got started on the chemo protocol last Friday evening. The Duke doctor actually did want to change the protocol a bit and hopefully this will be easier for Meg to tolerate. She'll be taking about 50mg of the Temodar every day for 6 weeks - and then a 2 week break. She is scheduled to repeat the 6 week on/2 week off cycle for 12 months.

She'll do another scan in late June and hopefully that will show stabilization or (even better) tumor regression and then we'll know that this is a good option for us at this time.

So far Meg is doing well with the treatment. Mostly, she's just extra tired. Though she didn't really sleep extra this weekend. She wanted to go to school today and all seems to be going well there. So thankfully, this chemo regimen has started up with little fanfare.

We are looking at going to a family brain tumor camp in late June. We heard about this camp last year at the family brain tumor retreat in Chicago and we thought it sounded really interesting. We weren't sure if we wanted to go since Meg was off treatment and doing so well - but once things changed we thought it would be nice to spend time like that with other families that are facing the same challenges.

Meg is going to start physical therapy again this week. Since her last MRI the foot drop and bad balance have become more pronounced. Poor thing - it just frustrates her so much to have trouble walking.

We thank you all for you thoughts and prayers and for continuing to support us for so long.

Sincerely,
Shannon

Tuesday, April 20, 2004 10:44 AM CDT

Thank you all so much for your messages. They are helping to shore us all up as we prepare to fight this beast again.

We are scheduled to start Meg's chemo treatment today or tomorrow. Since it's a pill we just have to pick up a prescription and give it to her a bedtime. We are still waiting on word from our doctor at Duke - and provided that he doesn't have anything different to say we will proceed with the Temodar as planned. The protocol calls for a dose a day for 5 days and then 23 days off. She should do this every 28 days for 12 months - provided that the scans show that she is not continuing to progress or that the side effects are not too much for her to take.

Terry is still spending a lot of time researching the immunotherapy protocol that seems to hold some promise as well. He's spoken with several doctors from all over who have used it and that has only encouraged him more to keep researching it. The downside for this protocol is that it is injections twice weekly. The upside is that it's not toxic and really only boosts the immune system. At this point we are hoping to be able to have this as an option as an add on to Meg's chemo protocol or as an option should this protocol be too much for her system.

Meg started on a steriod last week for the minor back pain she's been having. I think the dose was too high to start with as she became easily frustrated and angry. We backed it down and she's doing better much now. Thank goodness.

I also took Meg to a Reiki therapist yesterday. Reiki is an ancient Japanese hands on healing approach. Several people recommended this local Reiki practitioner (she's also an RN and a nun) as an option for easing some of Meg's back pain and also helping her emotionally prepare for this next round of treatment. Meg has been so upset since we told her about starting chemo again - I needed to get her relief. She really enjoyed the visit and wants to go back. And this morning she was feeling much better and was more like her self. We were all glad to see that.

We thank you all for your kind words and prayers. I think we are coping ok - but we all have our moments.

We'll keep you updated.

God Bless,
Shannon

Wednesday, April 14, 2004 2:38 PM CDT

Greetings all -

I've been putting this journal entry off for a few days because I knew it was going to be a difficult one to write and also I wanted to get all the information I needed before I shared it with you.

Here goes:

Meg's MRI last week showed the tumors in her brain and spine are growing again. This was a huge blow to us since we had such good news in December. We met with our local oncologist yesterday and he is definitely very concerned about what this means. His biggest concern is that Meghan's condition has worsened after only a year off treatment.

We spent a lot of time talking about treatment and we are going to start Meghan on another round of chemotherapy in a few weeks. This chemo drug is really the newest drug to the brain tumor community in the past decade - and it has shown some promise for tumor regression as well as achieving stable disease. And that is good news for us. We like hope and promise.

We will continue to do treatment here and interface with the doctor from Duke and from other places as well. This chemo drug is also much less toxic than the last regimen that she was on last time. It's in pill form and doesn't hair loss, problems with walking, etc. For the most part she should just be tired. Timing wise it seems to be good since school will be over soon and she'll have the summer to lay around as much as she needs to.

This is a tough one for us but we are all holding up well. Meg was really worried that she'd have to take the drug again that caused so much problems with her walking - but we have assured her that is not a concern.

It's time to round up the troops and get back into battle and I have to ask again for you all to keep Meg in your thoughts and prayers. I will go back to more regular journal entries and hope you'll stop by here often to check up on Meg and to leave her a note of encouragement in the guest book.

Your support these past years has really helped us through this and we thank you all for coming on this journey with us.

God Bless,
Shannon

Tuesday, January 27, 2004 8:57 PM CST

Happy New Year to you all - my apologies for being so bad about updating the journal these past months. Frankly I think no news is good news here and me staying away from the journal as been just another step in our return to a normal life.

Things here are going very well. Meg had an MRI right before Christmas - and it was another good report. Actually we had a "slight reduction" report for the first time and that was very exciting. There was one odd thing on the MRI report that was noted, however, the oncologist believes that it's nothing new and we are just hoping to confirm that with the doc at Duke. Overall we were very happy with the report.

Meg is doing pretty well in school. She struggles sometimes with being too social and not focused enough on her studies. It's hard I know - and a challenge for us all. Meg is doing karate - as you can see from the new picture she received her yellow belt recently. She seems pretty excited about it. I hope that for her physical well being that she'll continue with it. She still seems weak sometimes - though it was absolutely better than it was this time last year. She has grown so much too - 3 inches since last February. She's a total beanpole.

Meg is excited to report that she was accepted in the lottery for the technology magnet middle school that she wants to attend next year. She's really looking forward to it.

Both kids had a nice Christmas - and recently they had their birthdays as well. Meg is now 11. It's so hard to believe sometimes.

We hope that this finds you all well and healthy. We thank you for your support these past few years - you all sustained us.

God Bless,
Shannon Heisler

Monday, October 13, 2003 7:28 AM CDT

Greetings all -

We hope this update finds you all healthy and happy. Since school started back up things have once again gotten very busy at our house.

The kids are doing PSR (Parochial School Religion) once a week and Meghan continues to take karate and she has also added a dance class. Nicholas signed up for a Mite hockey team and he's spending a lot of time at the rink. It seems that Meg really wants to give up the karate - but I'm hoping that she'll stick with at least long enough to test for and achieve her yellow belt. It really helps her balance so much.

School is going well for both of the kids. Meg is finding that 5th grade is much more challenging than she thought. But she's doing very well with her grades. She's really become an avid reader this year and that's nice to see. She continues to struggle with spelling and that's very frustrating for her. This week Meg and I are going to tour one of city's middle schools in preparation for next year. I can't believe she's less than a year away from getting on a bus and heading off to middle school. We are really just not ready for that at all. But it's easy to tell with her up and down temperament that a new era is truly is around the corner. Both the kids are looking forward to school this Friday as it will be Grandparents Breakfast.

Physically speaking Meg is doing well. We haven't seen her oncologist since August. She's also stopped physical therapy and just uses her dance and karate and school PE classes as her PT. She still stumbles from time to time and has some balance issues. But it's not remotely as bad as it was for her when she was in the middle of chemotherapy. She has also put on a few pounds and boy is she getting tall. Finding pants for her long legs and little waist is such a challenge. I'm thinking that she is going to be several inches taller than me when all is said and done.

This September was a small milestone for us since it was 2 years since Meg's rediagnosis and all looks well. It was 2 years almost to the day from her original diagnosis when we found out that her tumors and recurred and spread. Perhaps that's why this last MRI was nerve wracking for us. Dr. G from Duke reviewed Meg's film and MRI report and he said that she was stable as well. Terry continues to scour the internet for more cases like Meghan's and for information about future treatment options. We started Meg on an additional dietary supplement after her last MRI that has shown some promise in reducing tumor burden. We hope and pray that God will heal her body.

Meg has been playing with friends more and more - though it seems that the social stuff is still difficult for her. She has started her Christmas wish list - we can't believe the holidays are once again around the corner. Since Meg is going to be off treatment for her birthday this year she is hoping to have a big party that includes a shopping trip to Club LuLu in St. Louis. I guess we'll be spending the next few months hearing about that. It is so nice for her to be able to make bigger plans these days and not have to worry about being too weak or tired.

The kids got their Halloween costumes this weekend. They are very excited about it. Nicholas is going to be a race car driver and Meg is sporting a cheerleading costume. Nicholas was all over my case for days to get out Halloween decorations - so we got that done this weekend. Now we just need to get out and get a pumpkin. This upcoming weekend is IC homecoming so Terry and I will spend some time over in Jacksonville. The kids will be getting together with their med school Special friends for a bonfire and a hay ride. That should be lots of fun.

Thanks for your continued support and prayers for us and for all the brain tumor kids. Check out the photos section -I added an updated pic of kids from Aunt Kimberly's wedding. The whole family was in the wedding and everyone had a wonderful time.

God Bless,
Shannon

Friday, August 22, 2003 12:39 AM CDT

Well summer vacation has come and gone. The kids went back to school today. Take a look at the guestbook and above at their first day back pics. They are just looking so grown up.

The kids had a wonderful summer. They spent a lot of time swimming and just playing in the neighborhood. They both had a great time at Camp Coco in July and in Tennessee for the family reunion.

But they were both really eager to get back to school as well.

Meg continues to feel better and better everyday. She had her first off treatment MRI 2 weeks ago - and her report was good as it showed no change in the brain or spine. We pray that we can get these reports for a very long time.

All in all life is returning back to normal without chemo and everything that comes with it.

We hope this finds you all well and enjoying the last days of summer.

Thanks for your thoughts and prayers,
Shannon

Monday, July 7, 2003 1:10 PM CDT

Happy Summer -

We hope this updated message finds you all enjoying the summer as much as possible.

All at our house is going well. We are really getting used to this "no chemo" lifestyle!

Meghan is doing really well. She is still getting stronger and stronger the further from chemo she gets. She is walking much better. And even more, she's really enjoying the new energy and is spending much more time playing with friends, etc.

Both Meg and Nicholas are home this summer. They are both doing karate and swim team. Last week they had 2 swim meets. They really seem to enjoy it - though I think they both wish they could come in 1st place every time. What Meg lacks in speed she makes up for in technique and determination.

Later this week they are both heading to Camp Coco for a whole week. A few weeks ago, Meg helped out that the Camp Coco golf outing. She had a great time. I think (and hope) that she has a really good time at Camp this year.

We also all participated at the Springfield Relay for Life with the kids cancer team. It was really a lot of fun for all the kids. Nicholas and Meghan got into the hula hoop contest - very cute!

Later this summer they kids are also heading to Tennessee for the family reunion.

Have a great summer,
Shannon

Saturday, May 10, 2003 12:15 AM CDT

Greetings all!!!

Just a quick update to let you all know that our trip to Duke turned out very well. The doctor there really didn't have much to report. Meg's scans of the brain and spine both looked good. There is no substantial change - so it was a "stable" report. But stable for us is very good. Meg's next scan will be in July. Every stable report we receive keeps her off treatment - and that's our goal!

Meg is getting stronger and stronger every week. She started karate up a few weeks ago and she's really enjoying it. We have noticed considerable improvement in her balance and walking. And I think she is noticing as well.

She is really starting to look more and more like a pre-teen. I'm not sure we're really ready for all the changes.

Both kids are eagerly awaiting the end of school and summer vacation. I think we'll be keeping very busy this summer with weekend trips, etc.

We hope that you all are doing well and enjoying your spring. I've added some new photos to the site - so check them out!

God Bless.
Shannon

Wednesday, April 2, 2003 9:31 AM CST

Greetings all - Chemo is Done!!!! New pics from the last treatment have been added so be sure to check them out.

It has really taken me too long to write this update – we just seem to get busier and busier! The great news is that Meghan officially finished her chemo protocol on March 13! Yippee! It was a great day.

We made it a really special visit to the clinic and took a lunch and treats for everyone there. It was so exciting – Meg’s smile told us all that it was time. I had one moment at the end where the whole thing scared me –I just gave the fear away to God and put the next steps in his hands. And that brought me the peace I needed to transition to this next step.

Tomorrow would be the day that Meghan would have gone back to chemo. It’s going to be strange not going there every week – but I think we can get used it. She’s still been pretty tired – I’m sure the energy will slowly start coming back as she doesn’t return to chemo.

We’ve planned our next trip to Duke Medical Center right after Easter. We’ll actually be in Raleigh for the holiday. At Duke, Meg will get her next MRI and we’ll also go through brain tumor clinic with the doctors there. Both the kids are looking forward to the trip. We’re anxious to see the doctors from there again – and get their perspective on her progress.

We’ve also changed Meg’s supplement drug protocol to adjust it to an off-chemo regimen. We’ve added some supplements that have had some successes in reducing tumors, etc. Hopefully this is just another step in her complete regression.

We cannot thank all of you enough for your continued support, kind words, good thoughts and prayers throughout this whole process. You all have made our passage to this point easier for us to tolerate.

Both the kids are keeping very active with basketball, soccer, swimming, karate, etc. etc. – this list just seems to get longer and longer. And my car just seems to get more and more miles – LOL. Their 3rd quarter report cards came home last week and things are looking very good there. Meghan actually had the best report card ever – she was just thrilled. Nicholas’ also showed a lot of improvement. Both are looking forward to the end of the school year and the summer. They are both going to be swimming on the swim team, going to Camp CoCo, etc.

Again thank you all for all the support and prayers. We’ll update again after we return with our report from Duke. Please continue to pray for Elijah as he battles a brain stem tumor. If you have time – please leave him a message on the site linked below.

Thanks.

God Bless,
Shannon, Terry, Meghan and Nicholas

Friday, February 28, 2003 8:26 AM CST

Greetings all,

As always, things are busy and going well for us. We have some news to share.....

Yesterday at Meg's chemo appt. her doctor told us that they went through her records, etc and determined that she is currently on her last cycle of chemo. Translated that means that Meghan will be finishing chemo in 2 weeks!!!

We were thrilled to hear that news and Meghan is so happy.

What does this mean? Well it means that she has completed the protocol that she's on and now we move to the next phase - Watch and See. We will scan every 3 months to watch the tumors in her spine very carefully. God willing - we've done enough damage to these tumors to keep them from getting any bigger or any more invasive for a very, very long time. (Forever would be our preference!)

We are filled with excitement - but at the same time it's incredibly scary for us all. In a lot of ways, chemo has been a security blanket for us. I think we all feel pretty vulnerable without it - but we can't continue to put 'poison' through Meg's system indefinitely.

We are scheduled to make another trip to see the doctors at Duke in late April. Meg will have her next MRI there and she'll be seen by the brain tumor doctors as well. This scan will serve as our baseline for future 'off-treatment' scans.

We have every reason to believe that Meghan can stay off of treatment for a number of years. And as she comes off treatment and stays off of it we can also expect that she'll become stronger and have more and more energy. The Dr. also told Meg to expect a growth spurt - she's happy about that.

We thank you all for your continued support, prayers and good thoughts through this. We're planning a "milestone" party of sorts at Meg's last appointment on March 13. I'll be sure to post some pics at that time. We ask you to keep her in your prayers as she transitions into this next phase.

We'll continue to keep this site updated. Thank you all again.

The Heisler Family

Thursday, February 13, 2003 9:32 AM CST

Greetings all -

As always, things have been very busy around our home. Meghan started another round of chemo 3 weeks ago - and should be finishing it up today. Except she got that nasty flu bug 2 weeks ago. She was down with it for more than a week so we had to skip treatment. And last week her counts were too low (probably in response to the flu). Hopefully her counts are back up and she'll be able to resume treatment today. I'm still unsure as to how many more rounds she is going to have until she gets a really long break (perhaps forever)!

Meghan and Nicholas both started swimming lessons up again a few weeks ago. Meghan is really becoming a great swimmer. I think breaststroke is now becoming her favorite - though she still loves to swim backstroke. She's funny at lessons because you can tell that she's constantly trying to be the first in the group done with every set of laps. Sometimes that competitive streak makes her swimming a bit sloppy. But it's so nice to see her excel at something physically. The swimming sure does help with the walking as well.

Both kids are also going to be playing basketball in the grade school's program. Nicholas has already played in a local gym program - but this will be Meg's first shot. I so hope that she doesn't get frustrated with it and get down on herself. She wanted to make sure that I told the coach about her difficulties with running. I think the benefits of playing on a team will be great for her.

Meghan should be having an MRI at the end of this month - but we've decided to wait and do her next MRI at Duke in North Carolina. We're planning a trip there in April. We've kept in close contact with the doctor there and we're insterested in his impression of Meg's progress over the last year.

Meghan went on her first "girls" weekend this past weekend. She and I flew up to Minnesota to visit one of my friends. We spent one day at the Mall of America. I think we found Meg's heaven on earth. She enjoyed playing with my friend's daughter, riding some of the rides, and of course shopping. I think she could have kept going and going and going. Of course once we hit the car she was out like a light. She loved seeing the Minnesota landscape - she was enthralled by the ice fishing houses and all the snowmobiles. She even went on a snowmobile ride - and was pulled by it on a sled. She really had a good time. It took a few days for her to recuperate from the traveling. We're so thankful that my friends hosted us for the weekend and showed us such a good time.

The kids were out of school yesterday. They both have their school valentines completed and are ready to share them tomorrow at school. Today Nicholas' class is celebrating the 100th day of school. Last night he carefully counted out 100 chocolate chips - and sorted them into groups of 10s, 5s and 2s. He was taking them to show today.

This weekend we don't have any major plans and we're all thankful for that.

We hope you all have a wonderful Valentine's day and weekend. Please continue to keep Meghan in your thoughts and prayers.

God Bless,
Shannon

Saturday, January 25, 2003 at 10:25 AM (CST)

Hello all -

We've had couple of busy weeks here - and everyone is doing great. Meghan started back at chemo on Thursday. She had PT first and then her treatment. Her counts looked very good and overall things are going just as planned.

Meg's return to PT has been very helpful and her back pain and walking difficulties are much improved. She's getting around very well now. Her emotional problems have also gotten much better. She's been playing more with friends and getting along with them at school. That is so nice to see - and I think it makes such a difference for her as well.

She signed up to take an afterschool drama and theatre class. She is so excited about it. It's nice to see her getting involved in extra-curricular activities again. Both Meg and Nicholas signed up for basketball as well. Meg said she knows she won't be able to keep up as well but she just wants to play. She's such a trooper. Nicholas had his first game last night. It was very entertaining - to say the least. The program is a great program and really focuses on the fun of the game and teaching the basics. Nicholas made a few baskets and had a good time. He also started karate last week - he's really enjoying that as well.

Last weekend was Nicholas' 6th birthday. We had some of his and Meg's friend's over for pizza dinner then off to see Kangaroo Jack at the movies. Then some of the kids spent the night. We were all tired on Saturday. But we got up early and went down to St. Louis to see my family and our kooky cousins.

We met up with Barb and Joe at the St. Louis Magic House - it was a great time. Soon I hope I'll be able to post a pic from Meg's hair raising experience! It really was a great visit with them and a great day.

The kids enjoyed a no school day due to the weather on Thursday. Unfortunately Meg spent most of it at treatment - of course she was happy that she didn't miss any school this time. She got her report card this week and once again it looked great. She has one topic that she needs to work a little harder on - but her grades are a great reflection of how hard she works each and every day.

This weekend we have some small plans - but will mostly stay near home.

Be sure to check out our photos - I added a new photo from Meg's birthday.

If you can please post a note to Elijah's website linked below - he's finally home from his 4 months stay in New York city where he received radiation and chemo for a brain stem tumor. The family is so happy to finally be home and sleeping in their own beds again. Elijah is doing very well and showing improvement every day.

God Bless,
Shannon

Tuesday, January 14, 2003 at 07:38 AM (CST)

Greetings all -

We hope you all are having a wonderful New Year. All here is going well. Meghan turned 10 on January 2. Woo Hoo!!!! Happy Double Digits!!!!

Her birthday was pretty quiet because her back and neck were really hurting for a few days that week. She spent most of her birthday propped up on the couch. I think she overdid it over break - with all the long car rides, snowman building, etc. She started physical therapy back up last week. The therapist said she thought that all the back and neck pain were muscular and that she just needed to get it stretched out. Things have gotten better since she started back up.

She is now on chemo break. Due to start the next round on Jan 23. Last week was a pretty exciting week. Our kooky cousins, Barb and Joe (Jackson sadly stayed home), came to visit and we had a nice dinner with them and the other Springfield family. Also Meg's good friend Hannah, who moved to Wisconsin last August, came to town for the weekend and Meg had a great time seeing her again.

Meg signed up to participate in an afterschool drama/theatre class. Hopefully she'll get into the class - they only have room for 25 - she's so looking forward to it. We keep telling her that she doesn't need a class to teach her to be dramatic - LOL.

Nicholas is starting karate and basketball very soon. He's going to be very busy.

Tonight all the special friends are coming over for dinner and to play. The kids are really looking forward to it.
And Friday is Nicholas' birthday. He's excited about having some friends over for pizza and a movie Friday evening. This weekend we are also planning to head down to St. Louis to visit those cousins again and see some of our other family.

Have a great week!
Shannon

Sunday, December 29, 2002 at 09:44 PM (CST)

Happy Holidays -
We hope you all had a wonderful long holiday weekend. Our holiday was enjoyable - but very busy. We returned home this evening as we've been travelling off and on since Christmas Eve.

Meghan was thrilled to get the white Christmas snow on Xmas eve - even though it made our trip out to Athens, Illinois that evening very slow going. We were at Grandpa Bob and Grandma Terry's house for Xmas eve. It was a very nice evening - with a visit from Santa included. Even though the whole family didn't make it this year - we managed to have a wonderful time.

On Xmas morning both the kids woke us early to see what surprises they could find under the tree. Everyone was quite excited with their gifts and then we shared a nice Xmas breakfast together. The kids also enjoyed playing in the backyard snow with Redd. He really loves the snow. Later on Xmas day we drove down to Granite City for to celebrate the holiday with my family. My mother made a wonderful Xmas dinner and we really had a good time. We got home late that evening.

We weren't home long as we got up early Thursday morning to drive to Ohio to visit Terry's mom and grandmother. It was a great visit with them all - we even got to see Terry's great aunts one afternoon. We all went to a paint your own pottery place and then Terry and the boys (we took our nephew Logan with us) went for an afternoon of bowling. The weekend came to an end too quickly and we headed back home this morning. I sure was glad to get home- but those fairies didn't come and clean up all this Xmas stuff in our absence.

Tomorrow Meghan has chemo in the morning. This will be her last treatment of this year. She'll be on break again for a few weeks. She's been pretty tired lately and very emotional. We are wondering whether the steroid she's been taking for as an appetite booster is causing some of the frustration and stress she seems to have quite frequently. We decided to stop the medicine for awhile and see if it gets any better for her. She's been having a lot of problems at school with her friends - it's so hard to see her upset. She says she just can't seem to get along with any of her friends and she doesn't know why. Poor thing. She desperately wants friends - but feels the differences between herself and her peers. And nothing we say seems to help. Hopefully this steriod has been the culprit and she'll be back to her normal self in a week or two. Emotionally this all (understandably) takes a real toll on her from time to time. And since she normally handles things so well - we aren't usually prepared whenever she "acts out".

As the new year approaches we are filled with hope for a healthier and less stressful 2003 for Meghan. We are so looking forward to the end of these treatments for Meghan and welcome a normal childhood for her for as long as possible. Though she has changed so much through this experience - I believe it has made her so much wiser and prepared for what life has to offer. I pray so much that when she has her last appointment in May - she'll be able to stay off chemo for at least 2 years. I'm afraid to wish for more than that - it feels selfish. Once she finishes in May we'll be working with the nutritionist more to put her on a tumor fighting protocol and diet that will hopefully help her body fight this disease and take over where the chemo stops.

Meghan is looking forward to an afterschool drama class in January. Goodness knows she can be dramatic!!! LOL. She turns 10 years old this week - I can hardly believe that little 5 pound 6 ounce child has grown so quickly. Where have the years gone? Some days I miss that tiny baby - but then again I marvel so much at the child she's grown into. She teaches me something new every day.

As always - we thank you and ask God to bless you all for your continued prayers, best wishes and good thoughts. May you all have a wonderful 2003.

Happy New Year,
Shannon

Sunday, December 22, 2002 at 09:17 AM (CST)

Happy Holidays,

We hope this entry finds you all healthy and enjoying the holiday season. All is going well here. Meghan had chemo again this past week. She won't have a treatment next week over the holiday due to scheduling conflicts. She'll wrap up this latest round on Monday, Dec. 30.

The kids are really looking forward to Christmas break and the holidays. They've been updating the countdown calendar every day. Last weekend we went to the our company kids Xmas party at the hangar. Meg had a great time playing the games - but mostly working on the crafts they had available. From there we went to see Nicholas at a swimming birthday party.

Last Sunday the kids and I went to the Springfield Theatre to see the performance of 'A Christmas Story'. The kids both loved the live presentation as they wondered whether or not Ralph would get that coveted Red Rider BB gun. It was a lot of fun.

On Wednesday we all went to St. John's for the Special Friends Xmas party. It was a lot of fun as both of the kids had most of their medical students there. The Ursuline Academy madgrigals performed and there was even a visit from Santa. Though Meg has clearly become "too" big for that stuff. They also had crafts there and Meg and Nicholas worked on those with their friends. We had a chance to spend some time talking to another family whose daughter has a brain tumor. Their daughter (almost 2) is just a darling child - she's blind from the resection surgery but a complete bundle of energy. Terry and I realized how difficult the situation must be for a family whose child can't tell them what they are feeling, etc.

We're very much looking forward to the next year and are hoping that this year will bring the end of Meg's treatments for a long time. It's hard to believe how far we have come this past year. Last Christmas was so difficult because of the unknown - I'm so thankful we've been able to get to a place where our day to day life is not all about brain tumors, etc.

We'll never had the words to thank the so many wonderful who have made this past year easier for us - but please know that we continue to ask God to bless you all for your goodness.

We hope that you all have a wonderful holiday and a very Happy New Year. We will spend the holidays with all of our families and are looking forward to some quiet time together.
God Bless,
Shannon

Monday, December 02, 2002 at 10:23 AM (CST)

Greetings all -

WOO HOO!!!!! We have good news today!!! Meghan had her MRI of the brain and spine last week - and for the first time she has showed more than "no change" in the spine. The MRI report shows improvement and slightly decreased tumor in the cervical region of the spine and the spinal cord compression that concerned us last MRI has also improved. Her brain MRI also shows improvement with no new tumor lesions. I can't tell you all how much this news means to us - it's a baby step but finally it's a step in the right direction. I can only say thank you to God for answering all of our prayers and thank you again to all of you for supporting us each and every day!

We all hope that everyone had a wonderful Thanksgiving. It was all of your support this past year that we were most thankful for this Thanksgiving weekend - as well as everyday.

On Thanksgiving we went down to visit my family in Granite City. Oh how I miss those huge family Thanksgiving with that gang. I'm not sure how many people we had for dinner - but it was great to be together with my family - grandparents, aunts, uncles, and cousins. I'm so thankful for them all.

On Friday we did a bit of Christmas shopping and enjoyed spending the day with my parents. Saturday Terry took the kids ice skating. It was difficult for Meghan since she just can't skate the way she used to. She really can't even stand up on the skates without support anymore - Meg got frustrated a bit at first - but just kept trying and did show improvement. Nicholas took off on his new skates and really enjoyed skating.

We have a lot going on this month – there are so many holiday parties planned I’m not sure we’ll even be able to make it to all of them. We did get up most of the holiday decorations this weekend and we all are enjoy them around the house.

Thank you all again for a long year of your prayers and good wishes – it means the world to us.

God Bless,
Shannon Heisler

Thursday, November 21, 2002 at 07:58 AM (CST)

Greetings all -

Things here are going along very well. Meghan has one more treatment tomorrow for this round of chemo and then she's on a 3-4 week break again.

Next week is one of our nervous weeks as Meghan goes in for scans on Tues. and Wed. We continue to pray that we'll get a complete response report. With the Thanksgiving holiday I don't think we'll hear much from her scans until the following week.

Meghan is definitely getting around better these days - she hasn't had Vincristine since May. The physical therapy really seems to be helping as well. She's a little run down this week as she finishes chemo. Last night she went to bed at 7:15 p.m.

Last weekend Meg and I went to the local theater to see Footloose. It was a very nice play - Meg really enjoyed. And a few weeks ago the Special Friends group had a bonfire and hay ride - Meg was on the news again.

Please keep us in your thoughts next week as Meg goes into her scans - and please also continue to share your thoughts and prayers with the Elijah Levine family (see link below) as he continues his radiation and chemo treatment in New York.

As always we thank you for your continued prayers, support and good thoughts. Next week will also be the one year anniversary of Meg's first chemo appointment - I can't believe we've been doing this for a year. Some days are harder than others - but the reason that we've all come through this as well as we have is because of all the wonderful support we receive from all of you.

God Bless,
Shannon

Wednesday, November 06, 2002 at 08:26 AM (CST)

Greetings all -

If you missed our Make-A-Wish trip update be sure to go to the history page to check it out.

Meghan started back up at chemo last week - her white counts and neutrophils came back up and thankfully she had no reaction to the Carboplatin.

She continues to go to physical therapy twice a week. Her walking is getting better every week. I think that lately all of this is getting to her emotionally. Later this month will be the one-year anniversary of her first chemo appointment - sometimes it seems like yesterday when that IV drip started for the first time. Meghan has about 6 more months of the complete protocol before she'll go off chemo, hopefully for good. We thank you all for your support and comfort this past year and appreciate you sticking with us. Your prayers mean so much to us all.

This week the kids are off school on Friday for parent teacher conferences. On Saturday we are going to a bonfire and hay rack ride with the Special Friends group. The kids are looking forward to it - hopefully it won't be freezing.

Please be sure to check out the link below to Elijah Levine's new site. Their family is in New York city undergoing radiation and chemo treatment for Elijah's brain stem tumor. They are staying at the Ronald McDonald house.

God Bless and have a wonderful week.
Shannon

Wednesday, October 23, 2002 at 10:16 AM (CDT)

Greetings All!

We are back from the Make A Wish trip to Orlando. It’s taken sometime to be able to sit down and write the recap – my apologies for the delay! Be sure to check out the photos page as I've added pics from the trip (unfortunately I'm limited to 3 so can't add as many as I'd like).

Basically – our trip was amazing – it was the best week ever. Meghan did exactly what she was supposed to do and just forgot about everything back here and enjoyed herself immensely.

Saturday evening we arrived at the Give Kids the World Village. This village is a 51-acre resort that is truly magical. It was created just for wish families and it includes everything. (See the web link below to see photos and read the story about its creator.) Upon check-in the kids received wonderful gifts and we were taken to our villa. The villa was so nice and was stocked with munchies, etc. The kids were thrilled with the bathroom that had a Jacuzzi tub big enough for a small family! We checked out one of the pools for awhile and then had dinner with some friends that live in the area. (Leann and Ken thanks again for making the trip to see us – it was a great evening.) Our only regret about the village was that we were so busy throughout the week we just didn’t have time to enjoy it as much as it deserved. There were also gifts in the room for the kids everyday when we returned from the parks.

Sunday we headed to MGM Studios with the kids and my parents. Nicholas was a bit timid about the attractions this time around – but we saw some great shows there. Meghan had a button from GKTW that allowed us VIP access to all the attractions – it was so foreign to receive such treatment – but Meg loved every minute of it. The highlights from MGM were when Terry made it into the ‘hot seat’ at the Who Wants to PLAY Millionaire show – he got up the 32,000 question (of course it’s not for real money!) Also Meg was treated extra special by the Queen of Hearts character who took Meg from character to character for photos and autographs. It was a very tender moment that touched all of us.

Monday we went to Magic Kingdom and proceeded to ride just about every ride and attraction available. We also were able to meet up with another friend for lunch and we had so much fun with that (Gina and family it was fantastic meeting you). Nicholas got over his ride phobia once he realized that there really wasn’t a whole lot to be afraid of. His favorite ride was Splash Mountain and Buzz Lightyear – he rode them both twice!

Tuesday we all went to Universal Studios for more rides and attractions. We all enjoyed the Men In Black ride and were pretty ‘moved’ at the Back to the Future ride. In the afternoon we had a special VIP backstage tour of Nickelodeon studios. The kids got to see and ‘taste’ GAK and SLIME! (They both said it tasted pretty interesting!) Then we all went to Nickelodeon’s Game Lab show. It’s not a taped show – but it’s where they test out games for future shows. Meg got slimed there! It was hysterical. Then we had reservations for Nickelodeon’s real show ‘Slime Time Live’ – Meg was part of the studio audience. And she got Pied in the face on Live TV! It was so funny. I had called my grandmother in advance to record it so thankfully we have it for historical reference.

Wednesday was Epcot. We had a lot of fun there going to the different shows – and we all agreed that the Test Track and Honey I Shrunk the Audience were the best! We stayed there all day and watched the amazing light and fireworks show.

Thursday was technically the end of our stay at the village so we moved to a hotel. But this was one of the best days. We had made reservations at Discovery Cove for a day of snorkeling, swimming, sandcastles and face-to-face meetings with real dolphins. Meghan, Terry and I all swam with dolphins. It was very cool. Nicholas just loved snorkelling around the lagoon and river! This place is just amazing! We all had a fantastic – relaxing time!

Friday we went to Sea World in the morning and then spent the afternoon shopping and then poolside! Then that evening we went to the Medieval Knights dinner theatre. It was so much fun – but Meg the ever-animal lover was afraid the horses were going to be hurt. Nicholas was very thrilled when our knight won and defeated the dark knight.

That pretty much sums up our trip. We can’t thank Make A Wish and Give Kids the World enough for a great getaway at a time when it was very much needed.

Meghan was supposed to start up chemo again this week – but white counts are too low so we’re waiting another week. Tonight we have a Halloween party with the Special Friends group – which the kids are really looking forward to! Although our costume situation still up in the air – oi vey!

Have a great week all,
Shannon

Thursday, September 26, 2002 at 07:29 AM (CDT)

Greetings all -

Things are still going quite well here. Both Meghan and Nicholas wrapped up their sessions of swimming lessons - they were both excited that they graduated up to the next class. Meghan's swimming has improved so much - she's really getting good at the breaststroke - though the backstroke is clearly still her favorite. She's hoping that after swim lessons all school year she'll be quite a contender on the KC swim team next summer. Nicholas has grand plans of swimming on the team as well. They'll both be starting up lessons again in a few weeks.

Meghan wrapped up another round of chemo last Thursday. The last two treatments of this round brought some difficulties as it seems that Meg might be developing a Carboplatin allergy. It's pretty common - but uncomfortable for her. Once the chemo finishes she has started shaking and chilling quite a bit and then she spikes a fever. Thankfully her port was still accessed and we could treat her with Benadryl to stop the reaction. We'll start pre-treating her with Benadryl to help ward off any future reactions. We are really hoping that we'll be able to come up with the correct equation - these reactions are very exhausting for Meghan. She can't really even walk once it's passed. I don't want her to get to the point where she is so afraid of the reaction that her spirit towards going to treatment goes down.

On the upside of things - her walking has dramatically improved as of late. With the physical therapy and supplements she's feeling much better about her ability to get around. She's even been asking to sign up for the YMCA basketball team. Terry and I are both a bit leary of that but we certainly don't feel comfortable holding her back. You just gotta love her attitude that she doesn't want any of this to stop her from having a normal childhood.

Last night was the kick-off party for another year of Special Friends. This program matches SIU medical students with children with cancer - and siblings as well. Both Meg and Nicholas enjoyed spending the evening with their own special friends. It's such a great program. Meg had her group of 5 students do a dancing circle - and it was quite the hit of the party.

Our Make-a-Wish trip is fast approaching. We are really getting quite excited - though we've not done much in the way of planning. Meghan has been making a list of her must-do's and rides that she must hit! Thankfully the trip hits towards the end of this chemo break so her energy level should be at quite a high.

Hope you all have a good week. Thanks for keeping us in your thoughts and prayers - your unwavering support means so much to us. Please also keep Elijah Levine in your prayers as he seeks treatment for his brain tumor.

God Bless,
Shannon

Saturday, September 14, 2002 at 07:38 AM (CDT)

Greetings all -

Wow things got very busy around here - I think all of our heads are spinning a little bit.

Meghan is doing very well. She has one more treatment this round and then she'll stay off chemo until we return from our Make-A-Wish Disney trip in October. We are getting very excited about that.

Last weekend Meghan was quite the celebrity - she represented Make-A-Wish at a charity golf outing and spoke a little bit about her wish and how much fun she's had as a wish child.

Then on Saturday, Meghan was honored by the Illinois Air National Guard as a Young Hero. It was a fantastic ceremony with all the guardsman in formation on the flight line. The medal is given to children who have exhibited great courage and bravery - well that's definitely her. From now on she's an honorary member of the National Guard family and she'll be invited to their social events - including Air Rendezvous. She was very honored and excited about the award. Thank you to Russ F., Master Sergeant Jordan, and the Guardsman for this great honor - we had an incredible time.

Both Meghan and Nicholas are enjoying school very much. Nicholas' exhuberance gets the best of him sometimes in class (that's a nice way of saying he gets into some trouble). But Meghan is once again excelling as a student - she has such wonderful study habits. She loves her teacher, Mr. Fowler. She said he just makes her laugh. For the first time in many months, Meghan has become more social at school and at home. She's really enjoying playing on the playground at school and has a newfound love for 4-Square. Last year, she stayed away from the playground because she was weary of her walking - but now she said she just is going to go for it. Physical therapy and her continued workouts seem to really be improving her walking. Thursday she was thrilled to report to her doctor that she actually ran in PE class - she said "I wasn't winning any races - but I was running for sure!". It is so hard fully describe Meghan's spirit - she is truly an inspiration to us all. Terry and I are so lucky to be her parents.

Meghan started taking nutritional supplements last week. These supplements are to reduce inflammation. They are also to boost her immunity system so her body can continue to fight the bad cells and to help the chemo work. Meghan's doctor, thankfully, is wonderful about letting us direct her treatment and try things that are not medical standards. We're hopeful that these supplements might help with the cord compression so that we can avoid spine surgery and radiation.

We also have some sad news. This past week Springfield lost two very young souls. John Gonterman, a handsome, 16 year old football player, died from a rare brain infection. We attend church with the Gonterman family and our hearts go out to them all. And Breanna Young, a 7 year old brain tumor patient died on Monday. Breanna was at chemo clinic with us many times and she was pure sunshine. Meghan and Breanna were also at Camp Coco together. They were little buddies. It is so hard when we lose one of these kids to this awful disease.

Also a young boy, Elijah 8, was diagnosed earlier this week with a brain stem tumor.

We thank god for all of you every day and know that you keep Meghan in your daily prayers - I would like to ask that you include The Gonterman and Young families and Elijah in your prayers as well.

I hope that you all are enjoying this wonderful weather. Today we are going to a picnic hosted by St. John's hospital in celebration of Childhood Cancer Awareness Month.

God Bless,
Shannon

Thursday, August 29, 2002 at 11:38 AM (CDT)

Greetings all,

Well Meghan and Nicholas headed off to their first day of school today - they were both very excited. (Although Meg tried to downplay it all - she's a big 4th grader now!)


Meghan's platelets came back up and she started chemo again yesterday. It seems that physical therapy is really helping her with her walking. We are so happy about that. Her weight is still holding steady as we've taken her off the steroid.

She has an appointment with the neurologist in St. Louis next Tuesday to help determine if we need to do anything at this point in time about the cord compression.

Please check out the photos section as I added the kids first day of school photo.

Hope this finds you all happy and healthy.

God Bless,
Shannon

Monday, August 26, 2002 at 07:35 AM (CDT)

Greetings all,

Well we had another extra week off of chemo as Meg's platelets are still low. The number is coming up and she should be able to start up again this Wednesday.

School starts for Meg and Nicholas on Thursday. They are both so excited. We'll try to post first day pictures quickly.

Not much word from the doctors yet on the final MRI reports - but it appears that everything at this point indicates no change. However, we are still waiting to hear more about the spinal cord compression. We will be heading to St. Louis sometime soon to get a neurological exam to determine if Meg is having any symptoms from the compression.

Please keep the prayers coming.

Thanks so much.

God Bless,
Shannon

Monday, August 19, 2002 at 07:30 AM (CDT)

Greetings all,

We hope that this entry finds you all healthy and happy and enjoying the last few weeks of summer.

Meghan had her spinal and brain MRIs last week. We still have not heard final word on the scans - but preliminary reports of the spine showed "no change". At least that means the tumors aren't growing. However, the spinal MRI showed that Meghan is having some compression of her spinal cord in the middle of her back. This compression could be causing some of the walking and balance problems she's been having - of course it could also still be chemo related.

Our local doctor is going to call the docs in New York and at Duke to get their opinions of possible courses of action for the cord compression. Future compression could cause any number of complications. Please pray that we'll find a treatment option that doesn't carry many high risks and terrible side effects.

We had a very nice weekend - our niece, Jordan, was up for a visit - as was Grandma Bean. The kids had fun visiting, swimming and going to the fair.

Meghan started physical therapy last Friday. She said it was hard work - but her walking seemed better afterwards for awhile. We are still doing daily exercises at home as well. She'll have another PT session today and on Thursday.

Meghan was also supposed to start up chemo again last week -but her platelets were too low so we're waiting another week for the counts to come up.

We need lots of prayers this week. Thanks for all your continued support and good thoughts.

God Bless,
Shannon

Friday, August 09, 2002 at 08:12 AM (CDT)

Well the kids are almost done with their vacation to Virginia Beach and Maryland. Reports home are that they've had a great time.

They went to the beach, a water park, a carnival, the Naval Museum, and Busch Gardens. Thank you so much to the individual who gave the kids the Busch Gardens tickets. They had an amazing time there.

The kids really loved their visit to my relatives in Maryland. Every time we talked to them they were just bursting with stories. I think Meghan was pretty charming and made herself some wonderful new friends. Thank you all for taking such good care of my kids.

Terry and I are really ready for our babies to be back!

Next week is Meghan's next MRI - I ask that all of you pray for wonderful results. These weeks are always the toughest on us all. We pray for strength and courage - and even a miracle that the tumors in her brain and spine are disappearing! Please spread the word and help us.

School is just around the corner - I can't believe how quickly this summer went by. Both kids are excited to see their new classrooms and meet their teachers. I hope that Meghan's strength will hold up so that she can make it through school each day.

Thank you all for your continued good thoughts and prayers.

God Bless,
Shannon

Monday, July 29, 2002 at 01:56 PM (CDT)

Meghan finished another round of chemo last Thursday. I've actually lost track at what maintenance round we're on - how sad is that? But in some ways I guess that could be considered a good thing - we are continuing with life in spite of the monster that is still living with us. But there are constant reminders for us that things aren't "normal". And sometimes those reminders are overwhelming.

For the past few weeks Meghan's walking has seemed to have gotten worse. We don't know if it's because she wasn't swimming for awhile - of if it is just progressive. Even though we took Meg off the Vincristine we haven't seen any signs of improvement yet. These days this is the hardest thing about Meg's illness - it's so hard to see her stumble and to have trouble doing things that other 9 year old girls can do. And as strong as Meghan always is - this is very hard on her as well. She was trying to kick the ball with Terry last week and she became so frustrated because of her limitations. It was just heartbreaking. She finally just broke down and told us how unfair it all is. She doesn't ask questions anymore like why did this happen to her - but she sure wants to understand why the "treatment" for her illness seems harder to take sometimes then the illness itself.

But Meg's spirit remains unbroken. She might be getting tired of all this - but she's still the fighter that we need her to be. Her strength is still a daily lesson to all who know her.

Meg and Nicholas are leaving Thursday to go to Virginia beach with Grandpa Barry and Aunt Vikki. Terry and I are sad that our babies are going on vacation without us - but we know that they'll be safe and have a wonderful time. Please pray for a wonderful trip for them all (and pray that the backseat fighting doesn't drive Grandpa crazy!).

Upon Meg's return it will be MRI time again - pray as well that we'll continue to see response and lots and lots of tumor shrinkage in the spine and the brain. I still have daily fantasies of hearing the doctors tell us that all sign of tumors are gone and I pray every night for that miracle.

I'm ready for my little girl to get her life back, I'm ready for the day that she can run again, play all day with her friends - she deserves all those things.

Have a wonderful week.

Thank you for your continued prayers and good thoughts,
Shannon

Monday, July 22, 2002 at 09:47 AM (CDT)

Greetings all -

It's been a few weeks since I've updated, my apologies. This summer is really keeping us all very busy.

Meghan went to Camp Coco on Sat., June 13. She was very excited to go and had a great time. She was even interviewed on the Channel 13 and Channel 20 news while she was there. She did get very homesick (and sent home some heart-wrenching letters) and came home 2 days early. But overall the experience was a good one and she said she definitely wants to go again next year.

Meghan will be wrapping up another round of chemo this week. Based on our calculations she is right about half-way through the entire protocol. She caught a bit of a flu bug a few weeks ago and had some high fevers and a lot of exhaustion. But she seems to be over that now.

This past weekend we travelled to Ohio to visit Terry's mother and grandmother. It was a great visit. Meg was pretty tired - but we managed to do quite a bit. And we had lots of fun visiting with both the "grandma's". Nicholas loved Great-Grandma Nixon's spool collection, he and Grandma made lots of racetracks and skyscrapers. We also went to the town's Art Walk and Festival Fair - it was fun. Thanks to both of them for showing us such a great time - we miss you so much already.

Both the kids are still hoping to go to Virginia and Maryland with my dad and sister in August. Nicholas is certainly planning to go and Meghan is assuring us that she won't get "homesick" once again. Hopefully they'll both be able to go and have a great time.

This summer is just flying by. I'm not at all ready for the kids to go back to school. I'm certainly not ready for my baby to be in kindergarten.

Hope you all are enjoying the summer.

Shannon

Monday, July 08, 2002 at 09:13 AM (CDT)

Greetings all,

We hope that everyone had a wonderful 4th of July long-weekend. Ours was busy and lots of fun.

Meghan started chemo up again last Wednesday (day change due to the holiday). Her counts again were good, her weight is still holding steady and her spirit is still quite strong.

There are 2 new families at the clinic receiving chemo for brain tumors. Sometimes it is just so sad to see new faces there. One little girl is 18 months old - she's just as cute as can be. She is on the 3 treatment of her protocol. Unfortunately her tumor surgery left her blind - but she's a complete bundle of energy.

We spent the day of the 4th at home. Then in the evening we cooked out with several families from the neighborhood. It was hot - but lots of fun.

On Friday the kids and I headed to the pool. Meghan had her swim practice and did very well - especially being 2 days out of treatment. She spent the rest of the day resting and napping. She takes naps most days now - especially with all the swimming. Friday evening we went to Terry's sister's place on the lake to watch the fireworks.

Saturday we went to Granite City to see my family. My dad is building a new deck - so Terry, my brother, my nephew all worked with dad all day on that. My sister and I took the kids to the Collinsville water park. It was very fun and not too crowded at first. The kids loved the waterslide, lazy river and other stuff. That evening we all went out to dinner with dad for his July 9th birthday.

Sunday we had a lunch/pool party at a friend's house as a Thank You for the Daughter's Hope committee. Everyone had a great time. Thank you so much to Amy and Darryl for hosting the party for us - it was wonderful.

Meghan leaves on Saturday for a whole week at Camp Coco, Bloomington, IL. She seems very excited about it. Of course, mom is not quite as excited. I'm not sure I'm ready for her to be gone from all family for a whole week. But I'm sure it'll be a great week full of fun. Past campers have told us that it's a fantastic experience - and I'm glad that Meghan is going to be around other kids "like" her. Please say an extra prayer that Meghan has a wonderful time and doesn't miss us at all!

Have a great week.

As always, thanks for your continued thoughts and prayers.

God Bless,
Shannon

Tuesday, June 25, 2002 at 07:44 AM (CDT)

Greetings all -
We had a wonderful trip to New York. We all loved the city a great deal. Getting around wasn't as daunting as we had imagined. The streets and avenues are laid out so logically - although there's tons of traffic it's really difficult to get lost. Nicholas really enjoyed hailing cabs! He also liked telling them the address of where we were heading - it was hilarious.

We went to see Central Park, Museum of Nat. History (dinosaur bones!), Times Square (w/ the new Toys R Us), St. Patrick's Cathedral, FAO Schwartz (of course), Grand Central Station.

We also took a 2 hour cruise around Manhattan island - we saw the skyline which is very cool, the bridges, and the Statue of Liberty - which at sunset was so beautiful.

The Ronald McDonald house was nice. They had a great play room with tons of arts and crafts, toys and a lot of video games that were all free! So every evening we'd all head there for a pre-bedtime round of pinball, foosball, etc.

The visits with the doctors were great - we liked both doctors. We didn't have to wait at all for either appt. Both told us that they agreed with Meg's current diagnosis and treatment. They both explained to us that Meg's tumors in her spine are pretty severe and they were kind of surprised that she's really had no symptoms because of it. They also said that they believed that these tumors in her spine were probably there all along - but since the original tumor was found in the cerebellum - protocol didn't call to scan her spine at the time. We completely understood that.

All in all the conversations were very good and the best news is that both doctors told us that the tumors right now are not growing, there has been significant response to chemo in the brain, and that we have time on our side. As it stands now Meghan has 11 more months of chemo to go and then we'll stop and just watch things for awhile. She could possibly be off and on some form of treatment for quite awhile - but the doctors gave us much more hope then we've been able to give ourselves for some time.

They recommended that we start some mild physical therapy for Meghan to help her with the muscle weakening and balance problems and her foot drop and that we stop the chemo drug that causes this stuff until she improves. Basically they said we'll always be balancing quality of life issues with treatment and that's why we need to make these adjustments so that Meghan can walk better and not fall down as much.

We also presented the $25,000 check to the Children's Brain Tumor Foundation and it felt so wonderful to be able to share all of your goodness with them.

Thank you all for your continued good thoughts and prayers,
Shannon

Saturday, June 15, 2002 at 02:10 PM (CDT)

Hello once again,

Be sure to check the photo page - we've posted new ones!.

We've had a very good week here. The kids are really enjoying summer break. They've been going to the pool almost daily - even though the water at the pool is still very cold!

Meghan has been attending swim team practices and while this is very hard for her - she enjoys it and has been improving daily. She can't make it through an entire practice yet but she sets goals for each practice and has really been giving it her all. She even had her first swim meet this morning. She was fantastic. She was very nervous at first, especially when she found out she was scheduled for 4 events - but after the first event she was hooked. She was smiling so proudly. She loved swimming in the relays with other team members - her 2 relays took first place. Then we had a celebratory lunch at Meg's favorite restaurant, Chili's.

She had her last treatment for this maintenance round on Thursday. Again we welcome the break. This round even seemed to go by pretty quickly.

Next Wednesday we leave for New York to see the doctors at Beth Isreal and NYU. We're excited to be staying at the NYC Ronald McDonald house. We've also bought tickets to see Beauty and Beast on Broadway. The kids are both very excited about that. We're glad we'll be able to have a mini-vacation at the same time we're talking to the doctors. Quite a good use of our limited vacation time. We also plan to go to the Children's Brain Tumor Foundation to make a check presentation from A Daughter's Hope.

Hope you all have a good week - we post again once we return from New York.

God Bless,
Shannon

Monday, June 10, 2002 at 03:19 PM (CDT)

Hello all,

Well one more treatment and it's chemo break time again - yeah! Meghan is doing very well right now. She had treatment again last Thursday and it went pretty well. We are now going to chemo earlier on Thursdays and we weren't used to there being so many more people there at that time. I think it was a bit of a shock for Meghan. But it went smoothly nonetheless.

My summer work schedule allows me to be home on Thursday and Friday with the kids - I'm so glad that my company is so generous and is allowing me this time for the summer. I'm so lucky.

On Friday the kids and I went to a friend's pool and had a great time swimming and visiting. Nicholas really loves the water. Then Friday afternoon Meghan had a friend over and they did sand art - then we all went to watch Nicholas' baseball game. Those games are really funny to watch - Nicholas made a great slide into 3rd base, though, he finished the slide about 2 feet short of the bag. He had a few good hits that night as well.

My sister and niece came down for the weekend and we had a great visit. We spent some time at the KC Pool and then went to the American Cancer Society's relay for life. Meghan got to walk with the other kids from the children's oncology team in the survivor lap. It was very touching. Then the kids had a great time dousing their nurses with water balloons, etc. I think they really enjoyed it.

Sunday brought more time at the pool, a soccer game for Nicholas, and then "stuff" around the house.

Today Meghan went to her first swim team practice. It was hard work for her but it sounds like she enjoyed it. We are just happy to find a physical activity that is not so hard on her body.

She's getting tired of her feet dragging sometimes. Her knees and tops of her feet are pretty scratched up from all the falls, etc. It's hard to see that happen to her - but as with everything she teaches us a lesson. Whenever she falls, many times, she simply shakes her head, asks for help up and says something like "these darn legs!" Sometimes she even chuckles at herself. She's all spirit!

I added a new photo to the site today from Nicholas soccer game - check it out.

Have a great week,
Shannon

Monday, June 03, 2002 at 10:21 PM (CDT)

Meghan is so excited for the last day of school tomorrow. She's ready for summer break - what a year 3rd grade has been for her. She's finishing this year with the wisdom and spirit of somone so much older than her 9 years.

Chemo last week went well. The vincristine is clearly effecting her motor skills, etc. I think we'll leave it out of the equation this week. She has also developed a bit of a cold and has been having trouble with a lot of coughing. She's not sleeping as well because of it. A quick check by Dr. Brandt showed that it is truly only a cold. She's taking some codeine now to help with the cough and to help her sleep as well.

Great news - final numbers from A Daughter's Hope are complete and we will be presenting a $25,000 check to The Children's Brain Tumor Foundation when we go to New York City later this month. We are still so incredibly overwhelmed by all the support we received that night at the benefit - thank you all.

Our main purpose for trip to NYC is to visit two doctors. We are seeing one at NYU and another at Beth Isreal Med. Center. Of course, we aren't expecting to hear much of anything new but we are very excited to be talking to more doctors that have experience with Meg's rare condition.

Meg is also hoping to "hitch" a ride and a vacation to Maryland with her grandparents later this summer. She's also heading to Camp Coco in Bloomington, IL for a week at "cancer camp" - she tells me she's going to be just fine away from home for a week. Perhaps someone should tell her that mom's not going to be just fine.

Terry and I were talking tonight about our upcoming trip and it's interesting sometimes how we have the same thoughts about something but are afraid to vocalize the words. There are so many times I just want some doctor to tell me that once Meg finishes this chemo protocol that will be it and we'll be able to move on to the next step of our lives. But no doctor ever says that to us. One of the doctors we are visiting put it best today in a email - that he treats this condition as more of a "chronic long-term disease" - then something that can be cured. I guess that really is the best way to explain it - we are going to be living with this beast for a very, very long time.

Meghan is actually considering swimming on the KC swim team. She obviously won't be competitive - but feels that the daily exercise would be great for her. I told her that she didn't even have to swim in any meets if she didn't want to. She's going to try it out at one of their practices and we'll see. Nicholas wants to go to! Perhaps we have a little family of growing fish.

Hope all is well for you. Thank you for your continued prayers.

God Bless
Shannon

Tuesday, May 28, 2002 at 07:53 AM (CDT)

Meghan started chemo up again on Thursday. Her counts looked good as well. It definitely hit her on Friday as she was exhausted and needed lots of rest. She was tired for quite a bit of the weekend - but she still kept very busy.

Meghan started again on Sunday with the muscle weakness and balance problems. She really takes these difficulties in stride and just shakes her head whenever she falls down.

Friday evening Nicholas had a soccer game. It was a great game and Nicholas scored another goal. He was pretty pleased. He had a nice save in goal as well. After soccer we all headed to a friends house for dinner and fun - the kids had a great time.

Saturday we worked around the house, did some shopping and went to see the movie Spirit. The kids liked the movie - but Meg was pretty teary-eyed for quite a bit of it. She has such a big heart.

Sunday was another nice day and after church we all went to the driving range to hit golf balls. Meghan and Nicholas each got a new club and they both hit the ball very well. After that we went to visit my parents.

On Memorial Day, Terry and my brother played a quick 9 holes then they both helped my dad put a roof on his new shed. Meghan and I visited my grandparents grave - we spent a bit of time there enjoying the many American flags up for Memorial Day and I also told Meghan several stories about my grandparents - Meghan really enjoyed hearing the stories. Then in the afternoon we headed down to my other grandparents house for a family BBG. It was great seeing all my aunts, uncles and cousins - that group is so much fun. It was no surprise, though, that the BBQ was eventually "rained" out. It's a family tradition! Everyone had a great time nonetheless.

Both the kids slept most of the way home last night.

Meghan is counting the days until school is out - she finishes up next Tuesday. She's very excited. Nicholas finises his school this Friday afternoon.

I'm really excited about being home a few more days of the week with the kids this summer as well.

Hope all is well,
Shannon

Sunday, May 19, 2002 at 08:19 AM (CDT)

Greetings all-

We had a pretty uneventful (thankfully) week here. With the benefit over and no chemo we sort of just coasted and it was a nice catchup week for us all.

Meghan continues to feel well. She was very tired last weekend after the benefit - but I think she's caught up now. This has been a great break from chemo. She seems to get stronger every day. Of course we all know the vacation ends this Thursday when we head back to the hospital.

Nicholas learned how to ride his bike without training wheels today. He still has trouble getting started and turning around [who needs those skills anyway ;)]. He's very excited about the "two-wheeler". Meghan did quite a bit of bike riding this week as well - she got a new bike on Tuesday. It's great exercise and it sure seems to help her work on her balance.

We are just waiting for it to warmup to be able to do more stuff outside.

We found out that we are for sure heading to Disney in mid-October for Meghan's Make-A-Wish. We hope that will be a perfect time to go. Some wonderful people gave Meghan and Nicholas some Disney clothes, PJ's and Disney dollars in anticipation for their trip. They are really excited.

Meghan had a friend spend the night last night. They went swimming at LRS, ordered pizza, played and watched a movie. Meghan got pretty tired early so it wasn't an all-nighter for her - but she had a good time.

She's also registering this week to go to Camp Coco in July. This is a kid's cancer camp hosted by SIU Med. School. She says she really wants to go - we're a bit concerned because she really doesn't do so well away from us for any extended duration. Guess we'll better be able to see whether or not she can really handle it as we get closer.

Hope that all is well - and all this rain and cool weather ends soon.

God bless you all,
Shannon

Sunday, May 12, 2002 at 09:50 AM (CDT)

A Daughter's Hope was a smashing success for everyone.

More than 450 people packed into the Knights of Columbus on Friday evening - and we believe everyone had a great time.

The silent auction tables were bustling most of the evening and there was clearly something there for everyone.

Our family was just overwhelmed with all the people and could not have been more pleased with the outcome of the evening. It was also so nice to see some surprise visitors from far distances.

Even Nicholas' soccer team paid a visit after their game - and boy can all those little players dance!

The band was fantastic! You guys did a great job.

And the good news we more than doubled our fundraising goal and plan to present the Children's Brain Tumor Foundation with a very large check when we head to New York in June.

Again, we cannot thank everyone enough for coming out and supporting us - I trust that you all had a great time. And even more thanks goes out to the Daughter's Hope committee who worked so hard for the past weeks and all evening as well.

Happy Mother's Day,
The Heisler Family

Monday, May 06, 2002 at 10:18 PM (CDT)

Hello all -

We had a very busy weekend here. It was so beautiful.

We spent a lot of time in the yard and working on the house - washing windows, working on the lawn, preparing for guests, etc. But we had time for play as well. On Saturday we all went to Knights Action park to spend a few hours with the special friends from the American Cancer Society. Everyone had a great time - Meghan and Nicholas actually have pretty good golf swings. The kids loved the driving range and playing putt putt. Then we all took a lap around the track in the go carts - Terry and Nicholas came in first, Meghan and Joelle (Meg's special friend) had a fast second place, and my pitiful excuse for a go cart was lapped several times by all the "younger" drivers. Couldn't have been because I'm a slow driver - hmmmmpppphhh.

Nicholas unfortunately came away from the trip with a bad case of sun exposure or sun poisoning. He ended up with a high fever and vomiting Sat. evening - it wasn't fun at all. We are certainly not used to Nicholas being the one who feels bad.

On Sunday we worked more around the house and then had an impromptu cookout with some of the neighbors. Again I was a big loser - but this time at bocce ball. The kids had a great time playing in the yard and on the swingsets.

Meghan is feeling really good these days. She wrapped up this round of chemo last Thursday - and she really wasn't even too tired this weekend. But of course she was ready for the break. I think she's really getting excited about upcoming summer break as well. She's started her workouts again and is still doing yoga regularly. Since we've been doing lower doses of the Vincristine her hair is starting to grow in - she has all the super soft short hair under the longer strands that never fell out. I guess at some point we'll have to get a cute short cut to catch it all up.

Well the benefit has really taken off and we've already achieved our goal of $10,000 to pass on to the Children's Brain Tumor Foundation. We have more than 400 tickets sold and the number appears to be climbing. Meghan is starting to get excited as well - though she worries a bit as she tends to get pretty overwhelmed in large crowds and with so much attention placed on her. Terry and I have both told her that she is free to just be herself.

Sometimes it's weird - it seems like we've settled into such a normal life that every now and then, for a moment, I forget about this huge monster we have living in our house. Especially these days with Meghan feeling so well - it makes it much easier to keep the "what if" and the "when" questions at bay, even if just for a moment. And those moments are so nice. On the other hand, this experience has given all of us perspective that I can't imagine living without. It sure is a catch-22. I'd give anything for Meghan to be healthy - but I know that because of it I treasure every moment just that much more.

Working on this benefit with our wonderful friends and family has also taught us many lessons - lessons of unparalled giving and of unconditional love and support. I can only say thank you from the bottom of my heart to everyone and thank god for all of our blessings.

I'm looking forward to seeing so many of you Friday evening.

God Bless,
Shannon

Saturday, April 27, 2002 at 09:39 AM (CDT)

Happy Rainy Weekend once again,

We had a pretty normal week here. Meghan had chemo again on Thursday. She's been having trouble again with balance and falling so she only had the one chemo agent. We left the Vincristine out as it is the one that causes the problems.

Yesterday I took Meg to see the endocrinologist. This doctor is going to make sure that the tumor near the optic nerve is not causing any pituitary gland problems. We'll know after her labs next week.

One more treatment and it is break time again. Just in time for the benefit.

We were hoping to get some work done in the yard today - but it's very rainy, cold and windy. So I think we are heading to the movies instead.

Meghan is all moved in her new room and she loves it. She is really excited about having a desk in her room - she's so good about getting her homework done there as well.

Nicholas had another soccer game last night and he scored another goal (we think, it was hard to tell with 12 kids in the goal!)

We're doing well on the benefit. Merrill Lynch employees held a lunch this week and gave all the proceeds to A Daughter's Hope -thank you to them.

Terry and I have also enjoyed getting back in touch with some old friends as a result of this benefit.

Everyone have a great week,
Shannon

Saturday, April 20, 2002 at 10:43 AM (CDT)

Hello all -

Meghan had her second MRI and tumor clinic for this session on Wednesday. This appointment was much less stressful then the one in January - in terms of waiting and waiting and waiting.

The MRIs showed no substantial changes in her spinal tumors but the small tumors that are in various places in the brain showed a marked improvement from October and Jan. scans - so that's good news.

Meghan had chemo again on Thursday. She's really taking this all like a champ these days. She works very hard to go to school and to do well. Usually by the weekend she's pretty drained and exhausted from school and from chemo. Her spirit is simply remarkable!

Nicholas had his first soccer game of the season last week - he even scored a goal. It was nice to participate in a "normal" activity again. Nicholas is really hoping to play baseball as well - but we were a bit behind in our planning and it appears it's too late to get him on a team. Perhaps in the fall.

Meghan has been practicing her yoga every morning - she really enjoys it. She hasn't had much more back or neck pain since last week - so that's good as well.

It got cold again for the weekend - so guess we'll be focusing on in house activities. Meg's room is pretty much finished - we are still waiting to hang some artwork and for some of the bedding to come in.

The benefit is coming along well. We have so many fantastic donations for the silent auction - I'm sure there will be something for everyone. I hope that all of you are planning to purchase tickets and attend - we are looking forward to a great evening.

We've scheduled another trip to a "brain tumor center" - we are going to Beth Isreal Med. Center in New York in late June. The doctor there as also been communicating with us on Meghan's case since last fall - we are looking forward to the trip and to hearing any new ideas he may have. Hopefully we'll be able to turn the trip into a long weekend for the whole family as well.

Meghan and Nicholas wish you all the best and Terry and I thank everyone so much for their continued prayers and good wishes.

Have a great week,
Shannon

Saturday, April 13, 2002 at 10:51 AM (CDT)

Greetings all -

We've had a very busy week. Terry was out of town on a golf trip until Tuesday evening, Nicholas had soccer practice 2 times and a game last night, Meghan has been taking the ISAT test at school.....and so on.

Also, on Wednesday Meghan and I headed down to St. Louis for the first part of her quarterly scans. She had her spine scanned. Everything went very well - and we got a "no change" report for the spine. Means the tumors are still there, but they are not getting any bigger. After the appointment we met Meg's Kooky Cousins - Barb and Joe near Union Station. They are from Lake of the Ozarks area, but were in town as well for Joe's checkup on his heart condition - please pray for Joe! We got to visit with them, swim at the hotel pool, and have a lunch together. It was a nice time.

Yesterday Meghan started Yoga instruction. She really enjoyed it a lot. The Yoga instructor is so nice and had a lot of good ideas for helping Meghan stretch her weakened muscles and work on relaxing as well. I might have to try it myself.

Today I took Meghan to my hairdresser for her first haircut since last summer. She got a fantastic massaging shampoo - Meg really enjoyed that. The hairdresser cut Meg's hair so that it'll look thicker and to catch up with the parts shaved from the surgeries - she's very happy with it.

Today I'm heading down to St. Louis to celebrate my niece's Jordan's birthday and then I go to DC tomorrow to attend a training class.

I fly in early Wed morning and will go straight to the hospital for the next MRI and tumor clinic.

The fundraiser is moving along great - we've collected a good amount of money so far and we have great items for the silent auction. Anyone wanting tickets or to make a donation, just email the address above.

Hope all is well - have a great week,
Shannon

Saturday, April 06, 2002 at 08:55 AM (CST)

Happy Spring -
Meghan was scheduled to start chemo up again yesterday but we held off because she wasn't feeling very well once we made it to the doctor's office. She was complaining of back pain - and has also had some complaints of headaches.

The doc wanted to wait until her MRI next Wed. before we started again - I'm not sure what's he's thinking at this point. But Meg's back pain has us all a bit worried.

She also went to St. Louis on Thurs. for an appt. at the Eye Institute with an neuro-opthamologist. That was a very good appointment - Terry and Meghan really liked this doctor a lot. The doctor explained Meghan's vision problems, etc - she said that the problems are much more related to damge from the previous surgeries and less to any tumor. She said that normally Meghan's eyes could probably adjust, but since she's on chemo it's more difficult for her body to "compensate".

Make A Wish came on Monday to begin the process for Meghan's wish - looks like she's wishing for a trip to "Give Kids the World" - which is a very magical resort in Orlando strictly for wish kids. They do much more than just provide tickets to the local attractions, etc. Preliminary plans are for an early October trip. Although we'll have to pull the kids out of school for the trip - we think it'll be less stressful in the "off-peak" season.

The tickets are available for the benefit and sales are going well. Hopefully many of you will be able to join us - if you need tickets just send me an email at the address above.

Hope that all is well with you, our friends. Please continue to keep us in your prayers as we head into 2 weeks of MRIs and tumor clinic.

Thanks and God Bless,
Shannon

Thursday, March 28, 2002 at 07:56 AM (CST)

Greetings all -

We've had a pretty good week here. Another Thursday of no chemo. Meghan has been in great spirits.

She brought home her report card yesterday and it was the best report we've ever seen. It was very clear that she worked very, very hard this quarter. She's gotten a new focus about school and she's so proud of herself. It's nice to see and quite a welcome change for us all. She's gotten so much better about school that she hasn't even had homework for the past week because she's been finishing it up at school. I honestly can't even say enough about this new development because school has been so tough for Meghan for the past year and to see her enjoying it is just wonderful.

We don't have any major plans for Easter weekend. This holiday kind of sneaked up on us. We are all excited about having a day off together tomorrow. We plan to work a bit on Meghan's room and then go to the movies together - Meghan and Nicholas want to see ET on the big screen.

Monday we are having a visit from a Make-A-Wish volunteer (wish granter). She'll interview Meghan and help Meghan figure out what she'd like to do for her wish. Right now Meghan is leaning towards a trip to Disney or the Disney cruise in early fall. If all goes according to plan, this fall will be about half way point through chemo.

Next week Meghan has a visit in St. Louis with an eye specialist, then she has 2 MRIs scheduled later in April. I can't believe it's scan time again - soon my stomach will be in knots all over again. Also, Meghan is starting a kids Yoga class next week - she's very excited about that as well.

Nicholas is doing well too - he's so excited about starting kindergarten in the fall. He just loves reading to us and doing his "homework". He's starting soccer and T-ball up this spring. He is such a fun boy to have around all the time. Yesterday when I picked him up from Montessori he started crying because he was just planning to go outside and play with his friends - he didn't want to go home. So I let him stay longer while I picked Meg up from school.

I hope that you all are making plans to come for the benefit during Brain Tumor Action week - it is shaping up to be a great party.

Happy Easter to all.

God Bless,
Shannon

Thursday, March 21, 2002 at 10:45 AM (CST)

Meghan is still on break from chemo. She has been doing very well. Still eating like a champ.

This weekend we have a Oncology family support group luncheon and then we are heading up to Peoria to celebrate Logan's birthday.

Anyone wanting to order tickets for the fundraiser ($25/person) please email us at the address above.

Have a great week!

Thanks, Shannon

Saturday, March 16, 2002 at 03:08 AM (CST)

Greetings all,

We've had another really good week. Meghan has been feeling great. She's gained 2.25 pounds since starting the steroid 2 weeks ago. She's so proud. She eats 2 breakfasts every day - a bowl of cereal before Terry is ready for work and a 2-egg and cheese omelet once he's ready. And she likes to eat Mac-N-Cheese for an after school snack and then eat a good dinner as well.

She's been having a really good time at school. Instead of fighting and crying about homework - she said she's really enjoying it again and has been getting all her work done in advance. A nice change of pace for her.

As of Thursday, we are on chemo break again. Meghan only had the Carboplatin on Thurs. - so once we come back from break she will have been off the Vincristine (the one that causes all the muscle weakness) for almost 28 days. This should give her muscles a nice recovery period.

Last weekend we had a great time in St. Louis at the hotel and the Science center. Nicholas was enthralled with the hotel location and spent lots of time in the window watching the planes land at Lambert.

This weekend we plan to just be home and work on the redecorating room project - we still have the shelf and furniture to finish painting. And Terry is still putting up ceiling for the finished basement.

Plans for the fundraiser are going along very well. We've been collecting lots of cool stuff for the silent auction. The flyer is completed - so watch your email or regular mail for your copy soon.

Happy Anniversary to my parents, Kathy and Barry. And Happy 9th Birthday to our nephew Logan.

Hope this weekend finds you all happy and healthy,
Shannon

Friday, March 08, 2002 at 02:07 PM (CST)

Good news yesterday - Meghan's counts were back up so she was able to have chemo and she gained 1.25 pounds! She said that she was so proud of herself. This new steroid certainly seems to be boosting her appetite.

Tomorrow we are heading down to St. Louis to spend the night at the Renaissance and go to visit the Titanic exhibit. The kids are very excited for the mini-vacation.

Hope that everyone has a great week - don't forget to Hold the date for:

A Daughter's Hope - Benefiting Pediatric Brain Tumor Research on May 10.

Shannon

Friday, March 01, 2002 at 08:02 AM (CST)

Hello all -

We hope this week finds you all healthy and happy.

Meghan did not have chemo yesterday. The Dr. wanted to wait a week with hopes that her WBC (white blood count) and Hemoglobin both come up. She was home from school Mon-Thurs - and she was very, very ready to go back to school today. I think that the time at home and all the rest has done her some good. She's looking a bit perkier than she has in the last few weeks.

This week was tough on us - we've gotten into such a "normal" routine that this setback was difficult. It was like a punch in the stomach to look at Meghan's very pale face, thinning hair and dark circles under her eyes - it was quite a dose of reality for me. But every day got a little bit better and when she started smiling and skipping around the house I was very relieved. Her appetite even increased a bit. The one drug she's taking for her appetite hasn't made a noticable difference, however. We are going to start her on something else and hopefully this one will be better.

Meghan was very worried that her eating habits were the reason her counts were so low this week - she was pretty weepy about it on Monday and Tuesday. I had to explain to her that it's not her fault at all and that it is the chemo that does it to her body - not her food intake. I realized after this discussion to be more careful in trying to get her to eat so that she doesn't feel that way. I think her sadness was par for the course for how tired she was feeling.

On a better note, the time at home this week allowed me to get a good jump on the room redecorating project. I got all the wallpaper border down in Meghan's room, the walls prepped, the the apple green color onto the walls. I really think this is going to look great when it's done. Meghan enjoyed helping with the painting. The room is looking pretty bright! This weekend we are going to paint the top of the walls, ceiling, and furniture. And Terry has some woodworking projects to do as well - he's making a shelf to go around most of the room and a "coffee" table unit that will double has storage space.

HOLD THE DATE: We are hosting a fundraiser for Brain Tumor Action Week at the Knights of Columbus on May 10. Plans are underway for a fun evening - we'll have a silent auction, 50/50 drawing and a band for entertainment. The proceeds will go for Brain Tumor research - we haven't chosen the organization yet. But we hope that lots of you out there will be able to join us. More details to follow - if you have any organization you think might want to sponsor or donate an item for the silent auction please let me know. (Sorry for the shameless solicitations - but we are really hope to have a very successful fundraiser - and a great party!)

Have a great weekend,
Shannon

Monday, February 25, 2002 at 07:48 PM (CST)

Hello all,

Meghan started chemo up again last Thursday. Even though she had a good break - white blood cell count and hemoglobin counts were both pretty low so she is really exhausted these days.

She is home from school for a few days and we probably won't be doing chemo this week. We are hoping that her counts will come up again soon.

We had a nice weekend. We were pretty surprised this morning to start getting snow. Too bad Meg is so tired, she probably won't be able to get out in it much.

We are in the process of planning an event in May for Brain Tumor Awareness Week. A planning committee has been formed and we hope to have more information for you all very soon. Hopefully we'll be able to have a great time and raise some funds for brain tumor research as well. Statistics are now showing the brain tumor diagnosis in children is surpassing childhood leukemia. Unfortunately there is not as much research dedicated to finding better treatment and cures for brain tumors. Perhaps we can all help in some way. I'll post some more ideas for you all soon.

Have a great week,
Shannon

Sunday February 17, 2002 8:02 PM CST

Greetings all -

We hope that everyone had a fantastic weekend. Meghan, Nicholas and I went to the Jr. Blues game Friday with Make-A-Wish. The game was packed with people - I think Make-A-Wish was getting a percentage of the proceeds so I was glad to see so many people there.

We had a dinner with other wish families and wish volunteers before the game. Unfortunately, Meghan was pretty tired so we didn't stay past the 2nd period. Meghan started a new medication this weekend to help boost her appetite. She said she seems to be hungrier - we are certainly hoping that this works.

On Sat. my sister Vikki came down from Peoria and picked up the kids and took them to my parents in Granite City for a visit. They said they had a great time down there and were happy to get to see everyone. Grandma and Grandpa even took them to see the new Peter Pan movie.

Terry and I went out to dinner and up to the Peoria riverboat to celebrate my birthday. We had a very nice time - but we were so glad when the kids came back home today!

Terry and I have been making plans to redo Meghan's bedroom - so we spent a lot of time today shopping for a desk for her room and looking at paint chips, etc. Meghan is really excited about redecorating - she's said she's going for a funky look. The paint she has picked out is like apple green and a periwinkle blue - it should turn out pretty good!

Meghan and Nicholas are out of school tomorrow - so Grandma Terry is once again coming over to spend the day with them. They are looking forward to that.

We go back to chemo on Thursday. This break has been a good one.

Other good news, Meghan is student of the week for her class. She's very excited about it. She gets to go down to the office every morning and appear with the other student's of the week on the daily "televised" announcements. And we get to go to a luncheon one day this week as well.

Thank you for your continued prayers. We hope this week finds you happy and healthy.
Shannon

Wednesday February 13, 2002 7:24 AM CST

Greetings All,

We hope that this week finds you all happy and healthy.

We returned from our trip to Duke Monday evening - and aside from a bit of exhaustion we were very energized from the whole weekend.

Travel-wise the trip could not have gone better. We had no difficulties with delayed flights, increased airport security, rental car reservations, etc. Actually both of our flights arrived at our destination early - and that does a lot to reduce travel-related stress!

We arrived Sat. evening in Raleigh-Durham and drove to our good friends house. Mark, Jen, Ryan and the animals were the perfect hosts - we had so much fun with them and we were able to relax and just enjoy the beautiful atmosphere and weather - thanks guys!

Sat. evening we went to another friend's house for dinner. Thanks to Beth, Marc, Cathy and the girls for the great meal and company - we just loved seeing you all!

On Sunday we all went to the Museum of Natural Science and Life. We all enjoyed the museum a lot - but Meghan was not a fan of the insect exhibit!

We found Duke University without difficulty and had some extra time to walk around the campus a bit. The chapel there is absolutely gorgeous. Once we download our photos we'll be posting them here for you all to enjoy.

We didn't have to wait too long for our appt. with the neuro-oncologist. He reviewed some of Meg’s previous and most recent MRI films with us. He actually pointed out several other tumor locations in her brain that we were not aware of. He did say, however, that all of those locations have showed response to the chemo and are all now smaller in size. He concurred that there was no change in the tumors that are in Meghan’s spine. This doctor spent a lot of time with us explaining all the treament options, etc. His recommendation was to stay on our current protocol since Meghan is showing some response.

He was very current on what currently going on in brain tumor research and he also had some ideas of some other things we could be doing. He even made a recommendation for how to increase Meghan's appetite - he was very worried about her size.

The doctor confirmed what we already knew - that this is going to be a long battle for all of us. But thankfully there are many new treatments being researched and tested and hopefully some medical advancement will come up soon that will provide a "complete response" and remove all of Meghan's tumors.

Overall the trip was wonderful. We were very pleased with the doctor and plan to keep him involved in Meghan's ongoing treatment.

Thank you to everyone that helped make this trip possible - we give thanks for all you prayers and support every day.

Sincerely,
Shannon, Terry, Meghan and Nicholas

Friday February 8, 2002 8:34 AM CST

Hello all -

The break from chemo this week could not have come at a better time - Meghan was getting pretty run down from the 10 straight chemo treatments. She rested quite a bit this last week and thankfully her appetite is starting to return. She will start chemo up again on Feb. 21. Then she'll be on a 4 week on/2 week off schedule.

Terry, Meghan and I leave tomorrow afternoon for the trip to visit the pediatric neuro-oncologists at Duke University Medical Center. We are all very excited about the trip, talking to the doctors, and having a bit of time visiting with some of our good friends that live in the area. The wonderful people from the Department of Insurance heard about this trip and held a bake-sale to pay for our tickets and other expenses. They were all so wonderful and we really cannot thank them enough for the help.

Thank you so much to everyone from Blessed Sacrament school for all your entries and prayers this week. Meghan misses all of your smiling faces so much.

Also a special thanks to Meghan's past brownie troop from Blessed Sacrament. They took up a collection and bought Meghan a GameBoy Advance - she's been hoping for one the last few weeks and will be very excited to have the diversion on the plane ride to Duke tomorrow. She is so excited about this gift! Thank you again.

Nicholas informed me the other day that he was going to have too much fun this weekend at Aunt Rebecca's and Uncle Chris' house to miss us while we were gone. He even packed his own suitcase. He's so funny!

I hope that this week finds you all healthy and happy.

Thank you for all the good thoughts, prayers, and wonderful assistance.

Shannon, Terry, Meghan and Nicholas

Thursday January 31, 2002 7:21 AM CST

Hello all -

Yesterday was a very long day for us at Cardinal Glennon. Unfortunately there were a lot of delays (some that could have been avoided, some that could not).

We stopped on our way to the hospital to visit my grandparents in Granite City. Unfortunately my Grandma Dee broke her knee a few weeks ago and she's not "flitting" about at her regular warp speed pace these days. Meghan and Nicholas both spent a lot of time Tues. evening drawing some "Get Well" pictures for her and we were very glad to get to spend a bit of time with her.

Our time there was shortened, however, when I realized that we had forgotten the Emla cream. This magical cream gets put on Meghan's chemo port and numbs the skin so that she doesn't feel the needle go in when her port is accessed. Not having this is very bad! So we made some quick calls and had a prescription called in to Granite City and we were all relieved to have that situation taken care of!

When we arrived at Cardinal Glennon we found out that they had mistakenly ordered an MRI of the brain only - not the spine. That took some time to work out, we insisted that they take a look at the cervical spine (upper) because it's not worth looking at unless they are monitoring the tumor tissue in the spine as well. Anyway that got sorted out and the MRI finally got started.

Then it was off to Tumor clinic where we met with the neurosurgeon, oncologist and neurologist. Clinically they said that Meghan is looking very good and that she is physically tolerating the chemo very well. She's lost reflexes below the knee but her muscles are still pretty strong.

Then we all looked at the films together and the net of that is that there is "no change" in her tumor. She still has tumor in the linings of most of the spinal cord - but does not appear to have grown since the fall. She also has a bit of tumor tissue around one of her optic nerves. There was a bit of "better" news in that the neurosurgeon reported that there appears to be no tumor tissue left in her cerebellum - after the surgery in the fall he thought he had removed 70 percent, but now he said it looks like her really got all of it.

Their recommendation is to stay the course with our current treatment. They really had nothing new to tell us about other options, etc. available at this time.

We are very much looking forward to our trip to Duke and to meeting the doctors at a "major brain tumor center" - if they don't have anything more to add, perfect. If they do then we'll take at look at that as well.

Thank you for your prayers, especially this week.

A special thank you to all the people from Dept. of Insurance for your wonderful contribution this week - you are all very wonderful and special.

God Bless,
Shannon, Terry, Meghan and Nicholas

Tuesday January 29, 2002 7:48 AM CST

Greetings all,

We've been so busy at home we just haven't had time to post an update. Meghan is doing very well. She had her 9th treatment last Thursday and it went as well as the others. She's been feeling a bit run down lately - but it hasn't slowed her too much. Our friend, Jackie, has been coming to Meg's treatments and Meg just loves it. One week Jackie did her nails, and last week they all played UNO. I think it helps take her mind off of everything else.

She had a friend over all day on Saturday and we all went to another families house for dinner that evening. We all had a great time.

Tomorrow is Meghan's MRI. I think we are all getting a bit apprehensive about the whole thing - this really is the hardest thing. We are hoping so much that Meghan's tumors have not grown at all. Please pray for good results tomorrow.

Thursday will be Meghan's last treatment before she has a 2 week break. I hope she'll get a bit of energy back on that break.

We'll post as soon as we can after tomorrow's tumor clinic.

Thank you for your continued prayers and good wishes - we hope this good weather finds you all in good spirits and health.
Shannon, Terry, Meghan and Nicholas

Thursday January 17, 2002 7:07 AM CST

Happy Thursday all -
Today is Nicholas' 5th birthday. He was so excited last night he could hardly stand it. He told everyone it was his last day as a 4 year old - he's just too cute some times.

Meghan is continuing to feel pretty well. Today is treatment number 8. She'll get a two week break here soon. On January 30, we go back to Cardinal Glennon for brain tumor clinic and MRI scans of the brain and spine. Terry and I are getting a bit nervous about it - we so desperately don't want to hear that the tumors are continuing to progress regardless of the chemo treatments. Of course, in our dream world we want to hear that the tissue has regressed substantially - but we really know that a "no change" report would be good news for us at this stage. It's hard to remember "baby steps" all the time.

The second weekend in February, Terry, Meghan and I are planning to go to Duke Medical Center to visit with to pediatric neuro-oncologists. They reviewed Meg's slides and films last fall and now we want them to review the next set and check Meghan over as well. This team has seen and treated this rare tumor spread more - and every patient family and report we read talks about how important it is to involve a major brain tumur center in the treatment. We're very interested in what they have to say.

So we are in the process of pulling together all the arrangements for that trip.

Meghan and Nicholas are both enjoying the change in Terry's and my work schedule. Terry is there with the kids every morning and takes them to school and I get home right when school is out. Meghan certainly gets more time to rest and play now. She doesn't complain near as much about doing her homework, etc. So that is definitely a plus! We've been playing lots of games in the afternoons and that has been great as well. We are planning to go to the library one afternoon as week as well.

I hope that this finds you all well and happy.

As always we appreciate your good thoughts and prayers.

Love, Shannon

Sunday, January 13, 2002 at 10:29 AM (CST)

Hi everyone, it's me Meghan.

Just wanted to tell you that the Jr. Blues lost in overtime last night. It was a bummer - they had a 3 goal lead going into the 3rd period and the other team made quite a comeback.

I had a great time with the Special Friends group and got to meet one of "my" Special Friends. She's a 3rd year medical student at SIU Med school, her name is Leah - and I thought she was real cool and funny! Last night Channel 20 news came to the game to do a story on the Special Friends - and I was on the 10 p.m. news - the tape was of me cracking up in the bleachers. I was probably laughing at something silly Leah said.

Today our family is coming over for cake and ice cream to celebrate my birthday and Nicholas' birthday.

I'm so happy to read your guestbook entries and that you are praying for me - please include my "kooky" cousin Joe in your prayers as well.

(Hey Nikki tell your mom the skirt still fits me so your mom can still hold off on the diet! LOL)

Love Meghan.

Hi everyone it's me Nicholas - I just wanted to say that the Jr. Blues lost last night - but I still had a lot of fun at the hockey game. Next week I get to have a birthday party at Jungle of Fun - I'm excited about that. I like getting on the computer and playing games!

Love Nicholas

Tuesday, January 08, 2002 at 02:54 PM (CST)

There are so many new messages from you all it's hard to keep up. Life at our house is going pretty well. I changed my schedule at work so now I am home as soon as Meghan and Nicholas finish school. Meghan now has more rest time, before the evening gets away from us - homework, dinner, baths, bed, etc... I think we are all going to be much happier with the new schedule.

This Saturday we all get to go to watch the Junior Blues hockey team play with the Special Friends group from the American Cancer Society. This group matches up medical students from SIU-Med. School with kids receiving chemo. The kids get to have some one-on-one time with their special friend and also enjoy monthly group activities like the Blues Game. Meghan is very, very excited about it. She is especially excited to meet some other kids in the area "like" her.

On Sunday we're having some of the family over for belated cake/ice cream for Meghan and premature cake/ice cream for Nicholas - oh 2 January birthdays is exhausting! :)

Meghan is back into the swing of things at school and has been doing very well. The workouts must be helping her because the other day she showed us she now has a bit of a muscle on her arms - she's so proud. Her energy level has been up the last few days and she's been in a great mood!

Sleeping is still difficult for Meghan - trouble getting to sleep and trouble staying asleep. That sometimes makes getting up for school a bit tough. Most nights a dose of Benadryl does the trick.

Best Wishes -
Shannon

Friday, January 04, 2002 at 12:36 PM (CST)

Yesterday was Meghan's 6th treatment. She is scheduled for a scan on Jan 30 - we don't expect to have any real news on how the treatment is working this early in the process.

Meg's birthday was great. We will be getting together with the family in a week or so to celebrate Nicholas and Meg's birthday "officially" - but she had a nice one. We went to Chuck E. Cheese for pizza and lots of games. Meghan is looking forward to a shopping trip tomorrow to spend some of her birthday money - at least I know she'll wear the clothes she picks out on her own.

She's been doing very well with going back to school - even has jumped right on the homework. But she said this morning she's glad it's a Friday. I hear that!

The other day Meghan decided to list all the good things about losing her hair - thought you might enjoy the list:
1)No hair in your face when you are eating
2)Less shampoo and no haircuts
3)You can swim faster
4)No hair on arms or legs

Terry and I are so proud of her for trying to be positive - and it certainly helps us stay upbeat as well.

Happy New Year to you all and as always thanks for your continued prayers and support.

Shannon

Monday, December 31, 2001 at 09:45 AM (CST)

Well it's almost New Year and we are certainly hoping for a better 2002! Meghan has been pretty tired the past few days - we are hoping for a quiet New Year's eve and New Year's day so that she can rest.

The wonderful people at LRS, where Terry and I work, have set up a meal schedule for Meg's treatment days and we are now receiving home cooked meals every Thursday. Although it's a bit hard to accept this type of help - it truly has been a godsend for us. Thank you to them.

Happy New Year to you all.

Thank you for your continued prayers.

Shannon

Thursday, December 27, 2001 at 05:08 PM (CST)

Merry Belated Christmas to everyone. We had a fabulous holiday with our whole famiy in Springfield for the day. Mark, Tina and Jordan are still visiting.

Meghan was feeling very good for Christmas Eve and Christmas day - she says her favorite part was passing out presents to everyone and watching them open her gifts. She even told Grandpa and Grandma Heisler that "they just spoil her so".

Today was her 5th chemo treatment. This one was an easy one as she has 2 weeks off the Carboplatin (which takes an hour to administer) so we were in and out in 15 minutes. She's been pretty tired since Xmas day - finally convinced her to take a nap today.

Tomorrow we are travelling to Bloomington to visit Jill and Suzi. Jill really lives in California but is coming through town for the day to visit her sister Suzi. Jill is my good friend and both of them having been keeping Meg's spirits up with tons and tons of cards, letters and small gifts. Meg is really looking forward to spending some time with them.

Next week on Jan 2 Meg will turn 9. So we have to get all the Xmas decorations down this week so that we can prepare for birthday - oi vey! What will we do if more presents come in this house? It's bursting!

We hope that everyone has a happy and especially healthy New Year. Thank you for your continued prayers and notes - we all love reading your messages and it certainly encourages us all.

Love, Shannon

Sunday, December 23, 2001 at 10:16 AM (CST)

Thank you for all your entries into my guestbook - they sure do cheer me up. I'm very, very lucky to have so many friends like you praying for me.

My Grandma Bean came last Wednesday to visit for Christmas- she's going back to Ohio today. We've had lots of fun with her here.

Merry Christmas to you all - and have a happy, healthy New Year.

Love, Meghan

Friday, December 21, 2001 at 08:29 AM (CST)

Wow we are so excited to get the guestbook messages from all of you - we appreciate all the good thoughts and prayers.

Yesterday Meghan had her fourth chemo treatment. So far she's holding up very well with minimal side effects. Not too much nausea. She has some leg pain as one of the chemo agents causes muscles to weaken. But Terry is very good about taking her to the gym at our company to workout and swim - so far that is seems to be keeping her muscles from getting too bad. She's quite a swimmer!

Her hair is still holding strong. The doctor is very surprised that she hasn't lost it all by now - that makes Meghan very happy.

Today is Meg's last day of school before Xmas break - she's sure ready for that. We are almost ready for the holidays- and are looking forward to having our family up here for Christmas.

Happy Holidays to you all - and thank you again for all your prayers. We are in awe by all the support we receive every day.

Love, Shannon, Terry, Meghan and Nicholas

Saturday, December 8 - 8 a.m. (CT)

This is our first entry into Meg's Diary. We hope that this diary will keep all of you informed about Meghan's progress as she is treated for brain and spinal tumors.

Please check here often as we'll all try to make regular journal entries. Meghan is very excited about seeing your entries in the guestbook so be sure to leave her a note every now and then.

Soon we'll be adding photos as well.

Love, Shannon, Terry, Meghan and Nicholas

Click here to go back to the main page.

----End of History----