In my Prayers

I am trying to get day 2 posted, but I can't because of this page. Little Coleman Larson has ended his battle with cancer. He has touched so many lives in his time here, and was one of the first carepages I started reading when I started this adventure a year ago. Team Larson, you are in my prayers, and your unwaivering faith is so incredibly powerful. You have been an inspiration to me and so many others on how to cherish every single day that we have with the children that God entrusted in us.

(The link is located on CarePages, the health-care community that Duke referred me to a year ago. You need to register to access these pages, as privacy is so very respected there. Coleman's page is called "ColemanScott".)

The Big Secret

On Monday, we finally got the house cleaned up (kind-of) from all the Christmas activity. Rick went back to work, and it seemed as if things were finally settled back to our normal pace of craziness. Also, add in a little bit of Oh shit! What do you do when 7 children are home from school?

I told the kids that if they cleaned-up pretty well, then we could ask Rick if we could go out to eat when he gets home from work. (Unfortunately, this is a rare occasion in our house. It's something that both sets of kids had in their previous lives, but since we became the Brady-Doodle's, It was one of the first things we gave up. Even McD's costs about $40-$50 for us.)

So they cleaned, and I was so sneaky, because the dinner was already planned, and we weren't even paying for it. But My God people, you would have done it too if your kitchen looked like mine did. And then when Rick got home, they nominated Rainia to do the begging, and she batted her eyelashes and asked in the sweetest voice possible if we could go out to eat. With all of her eylash batting, and sweetness, Rick gave in (planned) and off to the steakhouse we went.

When we walked into the back room, where all the REALLY long tables are, to the kids surprise it had balloons, and a couple of people they soon recognized, and some signs that Andrew had to get about 6 inches away from to read, but there it was, in large print. "Bon Voyage Andrew!" "Disney Bound!"

Before we went into the restaurant, we had given the kids the normal pep-talk which included things like No Screaming, No Running, Don't stand on the table or climb the walls. You know, pretend you are actually civilized. And of all times to listen to us, they chose this one. So there we were, they had just found out we are going to Disney, and not a peep out of this bunch. You could have heard a pin drop. Ummm...Kids? Helloooo? We are talking about the happiest place on earth! In three days!

Finally Andrew asked if we were going to miss any school, Of-Course we are, and then the excitement started. Brooke quietly asked me if she could let out a little squeal, just one, and I happliy obliged, her and Rainia screamed, jumped a few times, and then the giggling, talking, and eating began. They were sweet. And funny, and started talking about what to pack. And I wasn't even embarassed in front of the make-a-wish people the whole time. Well, only once, when Rainia told Kyley that no one wanted to hear her bladder. She actually meant Blabber, which wouldn't have been a nice thing to say at all. But Bladder was much more enjoyable for everyone. Oh-Yeah, also when one of the make-a-wish ladies told her she had ice-cream on the tip of her nose, and she proceeded to clean it off. WITH HER TONGUE. I quickly had to remind her that that was a talent best kept to herself. She also made an announcement that this was the best day ever because she found out she was going to Disney, AND she got food. Now I know that she meant food in a restaurant, but this was just too much for Rick, who announced that the best days of his life also were the ones when he got to eat food. They all really had the make-a-wish ladies laughing the whole time.

And when we got home, and the kids got the luggage that Rick and I have been collecting for the last few weeks from the goodwills and thrift stores in our area (and neighboring towns), the kids REALLY freaked out. This is where I was glad I said all the stuff about not climbing walls, or practicing your cartwheels in the restaurant. But they quickly calmed down when we put in the DVD they had given us about disney. They sat watching, mesmorized, with smiles from ear to ear, and the occasional squeal of delight.

So we leave early tomorrow morning, and we are staying here That site is for the general public. But they also sent us a site to look at for the families. Kind of a 'what to expect'. And of course I will share that with you as well. It is here. I haven't decided yet if I will bring my laptop, so I don't know if I will be updating, but I definately will when we get back. We get home on Wed. the 7th. And the kids aren't actually missing that much school, because they weren't scheduled to go back until the 5th anyway.

Cut the boy some slack!

OK, another look into the e-mail inbox. Man, that seems to be all this blog is about lately. Alright, I promise, this is the last one for a while. And, in this one I was VERY nice, because I know when to use the honey to catch the bees.

Ms. Teacher,

Hi!

I have a concern about Andrew today.

He says that he is positive that he put his homework folder in the appropriate place. He says that when you looked it wasn't there. He says that he had break detention because of it. He is worried that he will continue to have break detention, and not get homework passes because now he doesn't know where the folder is.

I know that he is trying extremely hard, and was so excited to get a homework pass last week.

Background info:

Andrew has cancer, and has no vision in one eye and limited vision in the other. He has had radiation treatments, which have affected his cognition. We are waiting for his first IEP meeting, have already spoken to a counselor, and understand that they will schedule it as soon as they can.

I only bring this up because is there any way that he could have placed the homework folder close to the box and not actually in the box due to his vision problems?

I looked through his bookbag and it is not there. I am more than willing to help him look through his locker, but I am hoping to avoid having to come to the school to help him find it, as this would be embarrassing for him.

Please let me know if you have any suggestions, as I am not sure what to do to help him.



Thanks so much,

Heidi Underhill McQueen

And the e-mail I received:

Ms. Underhill,

Andrew's folder was found. It was placed into the wrong class's homework tray. Since it was not signed, I gave it to the student in that class who has the same class number as Andrew. During planning yesterday, I checked into what happened to Andrew's folder. The other student returned it to me this morning and I then gave it to Andrew and explained what happened. Hopefully he will remember to bring it home tonight and you can sign it.

Thanks for your understanding and have a good day.

Ms. Teacher

I completely understand that we haven't had an IEP meeting yet. But we TOLD Ms. Teacher that Andrew had cancer and vision problems. When he told her that he turned it in during class that day, and she couldn't find it, could she not just take a little peek into the tray right next to the "correct" tray? It would have been on top of the pile. Did she HAVE to give him detention for placing it the wrong tray? OK, I understand it was his fault, but he has been trying SO hard. And now he has a DETENTION on the record. blah! Cut the boy some slack!!!

Hooray!!!

Everything looks great!!! I am so happy. The tumor has actually gone DOWN since the last MRI, meaning the radiation is still working. YYYYEEEEAAAAAHHHHH!!!!! I will post exact size measurements when Rick gets home with the paperwork. The Dr. says that the dizziness was probably caused by the tumor changing (shrinking). I guess that the attitude was simply 11 year-old-boy!!! Totally normal, but at least now we can feel more comfortable disciplining. lol. He doesn't even want to see us again for another MRI until Jan. unless Andrew shows symptoms. PHEW! Rick says he feels like 600 lbs. was lifted off of his chest, and I feel the same. Now to get ready for our camping trip...

I'm Scared

Rick and Andrew just left without me, because I decided to stay home and clean and pack for our camping trip this weekend. Now I'm really scared and sad because what if they get bad news without me. And is camping gonna matter if they find out tomorrow that Andrew has to start chemo? Of course not. Great. Now I'm crying.

Let them teach eachother

Hey All!!! We go up to Durham this evening. Andrew has a MRI early tom. morning, and then an appointment for us to get the results. We are praying that everything is OK. It's so difficult with his tumor to know what is normal and what isn't. He has had more of an "attitude", but is it from the tumor or is it because he just turned 11, and is testing the territory? He has had decreased appetite, but is it from the tumor, or is it because he's not going through a growth spurt right now? He did have a couple days of dizziness, but is it from the tumor? or did he have a little virus? We just never know. It's so scary to deal with this. Where his tumor is located, and the kind it is, eventually it will start growing again, and he will need to start chemo treatments. We just pray that the day is not today. Lets hope that the radiation is still doing it's thing, and we don't have to worry about more treatments right now.

I will leave you with a video of him, taken by Kyley without his knowledge. This is SO hilarius to us. He still has not regained full control of his right arm and hand, and he has a limp. All curtesy of the surgery. In this video, he shows that these things can have a distinct benefit.

Parenting 101 Lesson 4: What you can't teach them, let them teach eachother

Always Amazed

If you haven't been following my posts, I am so amazed at the care we receive at Duke Children's. I wanted to share with you an example of their commitment. Here is a copy of the e-mail I sent to his medical team at 9:39pm :


Dear Team,

I'm really not sure who I am supposed to e-mail about scheduling, Andrew McQueen, has an appointment with Dr. Grant on July 14th. We have noticed an increasing "attitude" for about a month, as well as lower energy for about that long. Now, he has complained of dizziness for 2 days. He also needed assistance walking once yesterday and once today. I was wondering if we should get an MRI scheduled sooner?


Thank-you,


Heidi Underhill
XXX-XXX-XXXX


Here is the reply we received at 9:43pm :


Hi there. We will try to move things up to see him sooner.
Latonya will give you a call.

Best regards,

Gerald Grant, M.D.
Assistant Professor, Pediatric Neurosurgery
Duke University Medical Center
Box 3272, Durham, NC 27710
Tel: (XXX) XXX-XXXX
Fax: (XXX) XXX-XXXX


And the reply we received at 9:46pm :

Yes, we can see him earlier as necessary. However, i would be at the ISPNO meeting from June 29th through the 3rd.

SG

**********************************************
Sri Gururangan, MRCP (UK)
Associate Professor of Pediatrics and Surgery
Director, Pediatric Clinical Services
The Preston Robert Tisch Brain Tumor Center
Duke University Medical Center
047 Baker House, Trent Drive
Durham, NC 27710

Tel: XXX.XXX.XXXX
Fax: XXX.XXX.XXXX


I am just amazed that within 7 minutes, we had received 2 replies. Did I mention that I love them? Also pray, or cross your fingers, or whatever you do. Keep Andrew in your thoughts.

Quality Time

Written 5/2/08

I have not updated in quite some time, but that is because of all the insanity raising 7 kids requires. I was about to say that nothing too interesting has happened around here but then I remembered that our lives are interesting simply because there are SO MANY of us.

Andrew went back up to Duke for a vision exam. They had told us in Charlotte that there was nothing that they could do about his vision, but after finding so many differences between Duke and Charlotte we decided to get a second opinion on that. Unfortunately they said the exact same thing. There is nothing that they can do about the vision issues. His eye has nerve damage, and the nerve is actually a different color in his “bad” eye. So no vision out of that one. His “good” eye is still not going to be affected by using glasses, they said that his is not a near or far sighted problem, but a focus issue.

I kept the boys home from daycare last Fri. because I didn’t have to work, and wanted to spend some quality time with them. During our quality time, I was in my bedroom watching Dr. Phil and they were in the living room watching Dora. Joshua threw a toy at Jacob, hitting him square in the middle of the eyebrows causing an intense amount of blood, tears, and guilt. I found Josh hiding under Brooke’s bed, I wanted to hide under my own bed, and even Dr. Phil felt bad. I rushed him to the ER, where they glued his gaping hole into a tiny scratch.

Unfortunately, the other boys at daycare can’t seem to resist reaching out to touch the purple circle in the middle of his eyebrows, but it should fall off on its own in a couple of days.

Rainia does have to have the tubes put in her ears, and she was x-rayed today to see if she also needs to have her adnoids removed at the same time. She seems to be very excited at the prospect of having surgery, and I for one, can’t wait to be her caretaker during the recovery process, because I love how she needs me EVERY 2 SECONDS when she has a cold.

Berd

Written 4/2/08

Congratulations to my berd* and her team for winning 1st place in the Battle of the Books for the first time in her elementary school's history.

We got the results back from Andrew's neuro-psycological assessment. It is very interesting, but we are still trying to decipher it. Maybe we should have Kyley explain it to us?

They are getting ready to go on the outerbanks field-trip. Rick is definately not going, but now we are questioning that decision. They said there would be A LOT of walking, students have to carry their own luggage, they will need to wear sweatshirts and coats, shed them and carry them, etc. All normal activities, but things Andrew might struggle with.

Brooke has her 1st soccer game tomorrow, and then the boys start T-ball on Sat.

That's all I have to report for today, except that next week is spring break for our school system and I am SO excited. I need a break.

-Heidi

*berd- beautiful nerd

Sick in Bed

Written 3/20/08

Sorry about the late post, but in the last few days, I have had to endure emotional issues so vile and repulsive that the very thought of them makes me want to vomit on this computer. Thus endagering mine, my fiance's, and a certain 5-year-old who is addicted to nickjr.com's, life-line to the outside world.

Anybody who sent a lovely e-mail about our safety, thank-you. We figured out the reasoning behind my near electrocution and house-fire. The "new" dryer had wires crossed, in that the red was connected to the white and the white was connected to the red. We re-wired them. Now we can sleep safely at night while also drying 1/200th of the laundry that needs to be done.

We fixed the water leak that saved our house, and we re-fitted the robot-arm to safely dispose of any lethal lint. By "we" in any of the above mentioned chores, I mean Rick. "We" also moved a large storage building from a house in the next town over to our current home, so that 9 people's off-season and waiting to fit into the next child-in-line's clothes will have a nice, dry, home. "We" also patched the roof, because a terrible storm blew off pieces of lovely to hear the rain while in bed on a stormy night tin roof all over our yard.

Andrew had a vision exam scheduled at Duke, and while on route, Rick and Andrew broke down in the car recently fixed by the new mechanic. The new mechanic had to drive the 1.5 hours to get them, because Heidi was dealing with vile emotional issues, while also dealing with a terrible cold or the flu or please put me out of my misery virus.

Rainia has hearing loss in both ears, more so in the right, in the lower tones. She has been put on steroids, nose spray, and daily sudafed to try to prevent tubes being put in to drain the fluid causing the hearing loss.

More later, I need to go cry hysterically, or throw-up, or shake violently while covered with three blankets while trying to sip tea with honey.

Doctors, parenting, and more doctors

Written 3/14/08

It sure has been a busy few days. The evening after the spelling bee, we had to get ready to go up to Durham, which is no small feat, since we have to lay out clothes not only for the ones who are going, but the ones who are staying as well. Plus make sure there is enough breakfast and dinner so that my brother doesn't have to deal with any of that. After the morning rounds of dropping off kids on Wed., we headed up and actually arrived 2 hrs early for his 1:00 app. Fortunately, they let us check into the hotel early so that we could rest and freshen up. The appointment was long. about 5 hours. At one point, Kyley and I left for a run to the store and ended up lost in the wrong part of Durham. But we found our way back, and after the appointment, we ate dinner and they swam in the pool.

They said that it would take 2-3 weeks to get back the report, which covers his intellect, memory, ability to learn, etc. everything that radiation can affect. So we should be armed and ready at his next IEP meeting. We got home at about 3:00 on Thur. afternoon, which was teacher conference day, so we went to our 5 conferences. Luckily all teachers got us in shortly after we arrived, since we weren't sure what time we would be back, we didn't schedule any specific time. The longest we had to wait was about 20 minutes.

When we got home at about 5:30, Rick had to turn around and go back to the shop, and boy did he miss all of the action. The kids staged an intervention on Brooke. I am not kidding. They sat her and I down and told her (and me) that she has this boyfriend that they hate. (same boy that seems to be the cause of her friends turning against her and her grades dropping from A's and B's to F's.) They said that he had called Brittney, Rick, and I many terrible things, and had even called Brooke terrible things. They told her that they didn't trust her decisions or her word, since she had said that she didn't like him anymore. They said more, but I am practicing the whole discretion thing.

I was so amazed, that the kids would do this, that when Rick got home, I had them go through it all again. I know that it sounds typical for a 13 year old to have a boyfriend, but this can't be normal that it would affect her friendships, grades, and even siblings, so we're really at a loss. Were not quite sure what to do.

Rainia had a follow up Dr. appointment today, her infected toe is much better. Unfortunately, her ears are still too full of wax. At our last app. the Dr. suggested this homeopathic remedy called ear-candling, which was so funny, I'll have to post some pics. But, the candling didn't take care of the problem, so now we are being referred to an Ear, Nose and Throat specialist. He said that the wax build-up is really severe, and she probably has loss of hearing at this point. She has always had an abundance of wax, and the reason we switched pediatrician's is because the last Dr. office busted her eardrum while trying to irrigate the ear. Poor Girl!!! This was years ago, but she was so afraid to go back in there we had to switch Drs. (I don't blame her. They say that a ruptured ear-drum is extremely painful.) Fortunately, our pediatrician now says that anything like that should be done by a specialist who knows what they are doing. So more Drs. appointments on the way.

Brooke got her glasses today as well. So, this has been the first chance I've had to post an update. And now to tackle the bags of clothes and toys that are still in my living room...

Who needs the Gym?

Written 3/9/08

There is NEVER enough time to do everything. This is what Rick and I did all day: moved furniture. That's it. Didn't have time to do laundry, didn't have time to give the kids haircuts (which they desperately need). didn't have time to clean house. Nothing just moved furniture, grocery store, dinner, homework. I'll be so sore in the next few days. We finally got all of the stuff and furniture out of Rick's old house, but we have no room until we get a bigger house, so to the shop it went. Except for about 15 bags trash bags full of clothes and toys that I have to go through. Our next yard sale will be a big one.

Rick is not happy, because the kids room in his office now looks like a storage shed. But, better there than in our house. We already have 9 people crammed into 3 bedrooms. I'll be SO happy when we get a bigger place.

We had someone come to the house from hospice that Duke recommended. She came to talk to the kids about dealing with andrew's illness. It was not very productive, because they have been dealing with this for 2.5 years. This would have been really good in the very beginning, when Rick and Andrew were in the hospital, and the girls came to live with me and my kids. At that time the kids needed someone to talk to, to cry to, probably to scream at. Now, not so much. Now they are used to this chaos that we call life. But, since switching to Duke, we are taking advantage of everything that they offer.

We still go up to Duke Wed. for Andrew's neuro-psyc. app. This app. takes 4-5 hours, so we will be spending the night up there. Kyley will be coming with us this time, it's the day after the spelling bee.

I can't believe that I have to go back to work tomorrow, with 15 trash bags in my living room, and not having accomplished what I wanted to this weekend.

I did get Kyley's room done on Sat. though. when she won her school spelling bee, we rewarded her with a room make-over, which is a loft bed that we built the weekend after the bee. I hung curtains and built a shelf for her stuff and TV the following weekend, and I now finished the bottom, with an office area and a dressing area. It is so pretty. She now has the best room (well, half a room) in the house. She also has much desired privacy. Now all the kids want curtains on their bunk-beds. Maybe next weekend...

not too much pain

Written 2/27/08

Andrew's PET went well, and they got back in time yesterday to make the transportation rounds. Dr. Grant wrote us a RX for the topical numbing cream, and Rick put it on Andrew an hour before his appointment. It made a big difference, Andrew was able to take his shot w/out any tears. So, we head back up tomorrow for the results. the app. is scheduled for 1:00, so we wont have to spend the night. We'll leave early, and head back after the appointment.

Worth the Trip

Written 2/26/08

Yesterday was back up to Durham. We drove 2 cars, Brittney and I in 1, and Andrew and Rick in the other. we spent the night at the hotel, and let Brit and Andrew play in the pool. Early this morning, we took the hotel van over to Duke for the MRI. It was a long one, as they were doing the brain and spine. Plus, Andrew kept coughing, so they had to take some of the pictures over. He hates IV's!!! After everything that he has been through, needles still bother him. Alot.

So, 2 hours later, we took the hotel van to another building for lunch and the appointment with doc. Grant to read MRI pics. We had to wait, wait, wait, wait, wait. But, it was worth it as Dr. Grant said he thinks that there is no need for chemo at this time. YEAAAAAAA!!!! Not trying to get overly optimistic though because he said that they still need to see the results from the PET tomorrow, but YEAAAAA!!! He said that the MRI from last month to this month has good improvement, which means that the radiation is still working. There is no sign of the miracaculous imploding cyst, which he said was probably a side-effect of the radiation. Thank-you God that it's gone. We did get some info. on the exact size and location of the tumor 4cm x 2.5cm x 4.2cm. This, compared to 6 months ago of 4cm x 3.2cm x 5.1cm. So, very good visit today.

Brittney and I drove home, while Rick and Andrew stayed for another night. They will go for the PET tomorrow, and come home. Rick, Andrew, and I will go back on Thursday for the results, and the visit with Dr. G (different then Dr. Grant)

Andrew's shunt moved during the MRI today, and it took a very long time to get it back on the right setting. Also, Dr. Grant refered us to the pediatric eye specialist up there to see if there is anything that they can do about Andrew's vision problems. We were trying to get it scheduled for the day after his neuro-psyc. in March, but they want to do it the following week, so, it looks like next month will have a lot of travel time and expense as well.

One thing that has been bothering us is that Andrew seems to be having some halucinations. He had a terrible fright a couple of weeks ago, but we thought that it was related to his fever, as he had a bad cold. Oddly, while up there in the pool with Brittney, the under-water lights were playing tricks on his eyes. He was pretty scared. So, we are going to mention it to Dr. G on Thur. just in case it is more than just his normal vision problems. Has anyone ever heard of this?

Well, I have a long day tomorrow, since I have to get the kids to 3 different schools in the morning, then go to the shop for Rick, then go to my job, which is taking a field-trip, and I wont be done until about 7:30. Hopefully Rick and Andrew will be home in time to do the rounds of picking up kids. If not, I will ask my mother and brother for help. I hate the days without Rick and Andrew, it reminds me of when they were in the hospital for 2 months.

I was going to stay home last night, because of everything going on with Brooke, and because of the inconvenience of taking 2 cars up there. but, I'm really glad that I went. I like to hear things directly from the doctors, and especially when it's good news.

Field of Dreams

Written 2/21/08

Everything is well with Andrew, we are still planning on going up to Duke this weekend. He will have testing Mon. and Tue. we will get the results on Thur. The doctors will tell us if they recommend chemo. We are praying for good results.

Make-a-Wish called and they will be coming out on Mar. 1st for his interview. Our prayer on this is that Andrew is sensable. He has been talking about a baseball field in the back yard. Not so wise, as my mother owns the land, and if we buy it from her, we will be building our house right where he wants his field.

Blessings

Written 2/11/2008

More of the same good news today. We had a IEP meeting today at the school which included the doctor. I guess he is the Gaston County School Dr. because he has been at our IEP meetings before. when we updated him on Andrew's case, and explained that the cyst growing on his tumor had collapsed by it self and drained itself, he was very impressed. He stated that he had never in his career heard or read of that happening. Just more confirmation of how much of a miracle this was. We have an amazing God who has blessed our boy with a second chance. We know that if we had not cancelled the surgery, Andrew as we know him wouldn't be here. It is amazing the difference in Andrew's actions and personality since he got that cyst off of his brain stem. He is active again, like when he first came home from rehab. Like before radiation. The teachers mentioned, and we know it all to well at home, that it is so awesome to see him like this that we all don't even want to correct his behavior. Of course, we don't want to create a monster, but we find that it may just take a couple of seconds before we tell him to stop running through the house, or flipping onto the couch. It is just so good to see him doing these normal, everyday activities that we haven't seen out of him in a year and a half. Thank-you Lord.

In other news, Rick and Kyley are sick with a bad cold.

Jacob and Joshua cannot wait for t-ball to start.



Brooke has a pinata project at school, and I knew before hand that the boys (J&J) would be bothering her the whole time, so I said that they could make one, and the next thing I knew, we have six kids currently making pinatas. They have to dry between each layer, so I am making two large batches of paper mache every night. There are so many ripped up newspapers (25 - I got them from the school I work at) in the kitchen that it looks like a giant mouse house. We had pizza last night and McD's tonight because I can't get to the oven.

Got to go- company. More Later

The Call

Written 2/7/2008

Quick update- The Make A Wish Foundation called during lunch today. We knew that Andrew was eligible, we knew that the Doctors at Duke were going to refer him, we even spoke to him about it. Why was it such a hard phone call? When I talked to Andrew about getting to have this great wish he was excited, and so was I. When Rick and I talked about it we were both happy for him. Why now, that we got the call, does it seem so sad?

Busy, Busy, Busy

Written 2-5-2008

Well, we have four appointments scheduled at Duke in the next couple of months. We have a Doc. app. with neuro-surgeon, and a MRI on Feb. 25th, followed by a PET scan on Feb 26th. On Feb. 28th, we go back for the results of these. Mar. 12th, Andrew has a neouro-psycological eval, which should help with the IEP meetings at school. So, we're very excited and nervous to be returning to Duke, but the transportation issues are beginning to arise.

Although the ride is only three hours, we need to stay up there on Sunday night, since his app. will be early Mon. morning, so that we don't hit any traffic issues. We will also need to stay up there Mon. night, as it doesn't make sense to come home and drive back the next day. (Cost of gas). So, we have decided that we will drive two cars up on Sun. night. Brittney will also be coming along. (Last time Rainia went). We will stay through the app. with Doc., and the MRI, and then Heidi and Brittney will return home to the other kids, school and work. Rick and Andrew will stay Mon. night for the PET on Tue. Then, they will return home to school and work. Thursday, Heidi, Rick and Andrew will drive back for the results, and drive home the same day. PHEWW. A Lot of figuring out who is where and a lot of driving. Our prayer request is that the MRI and PET scans show enough improvement that Andrew will not need to start chemo-therapy.

In other news, Andrew is doing well adjusting back to school. He is eligible for some home-bound services, which we have decided will be about three hours a week at the school (Since Rick and Heidi both work). His wonderful teacher, Mrs. Culbertson, has offered to be his tutor, keeping him in the classroom after school, and then transporting him to Rick's shop afterword. Yeah! He is also eligible for EOG tutoring one hour after school on Tuesdays. Hopefully he will be able to have enough strength and energy to go through the school day plus 1-2 hours after school. (Another Prayer request)

All other kids are doing well, although we have been having lots of discussion about chores since I, (Heidi) am at my absolute stress threshold, and if I find any more clean clothes in the dirty laundry that I have to rewash I will cry. laundry for nine people is impossible. Every time that I think I get the pile down, they clean their room, and in comes another truck-load.

All weddings plans have been put on the back-burner until we find out more about what Andrew will need, but it is a wonderful escape. After talking to doctors on the phone and researching astrocytoma treatments, after going to work and the grocery store then cooking dinner, after dealing with grades and homework, after bathtime and bedtime, and laundry, and laundry and laundry; how wonderful it is to escape into the world wide web of venue locations and dresses and cakes. It has been so fun to daydream and talk about receptions and lodging and of course the honeymoon. Can I stay at this stage forever? We don't even have a date, and thank God, because that would be more STRESS!!!

Thank-God

Written 2/1/08

We were encouraged by the social worker at Duke to begin this page, as it will be an easy way to keep everyone updated at the same time. Please don't stop your wonderful, supportive phone calls, as we love these.

As those of you who know us already know, we have recently switched health-care providers from Charlotte to the Robert Preston Tisch Brain Tumor Center at Duke. I encourage you to visit their website. We are extremely excited about this switch, as we finally feel that we are in capable hands. We feel as if the world has been lifted off of our shoulders, and we don't need to make these crazy, life-altering decisions on our own or uninformed any longer.

For those of you who don't know, Andrew was scheduled for his second brain surgery on Jan. 14th. Both Rick and I were extremely hesitant and scared of this surgery, because of Andrew's experience with his first surgery, and because of our amazing Lord putting fear and hesitation into our hearts through the Holy Spirit. In the last few months Andrew's dizzy spells have increased in number, both at school and at home. He could usually recover from these, by sitting on the floor and waiting for it to pass. Unfortunately, right before Christmas vacation, Andrew had a bad spell at school, which he was unable to recover from. Rick picked him up from school, and during vacation, Andrew got progressively worse, finally unable to walk at all.

Andrew was extremely ill, unable to walk, and spending his days at work with Rick, using his wheel-chair for mobility. This is why we agreed to the surgery, which his surgeon had been trying to get us to agree to for some time. On Jan. 11th, 3 days before his scheduled surgery, Andrew got out of his wheel-chair and went outside to play at the shop (Rick's car-lot). The next day, while home with me, Andrew went outside to play basket-ball with Brooke, where he spent most of the day. The following day, Jan. 13th, we went to church, where our pastors and elders annointed Andrew with oil, and we laid hands on him to pray for healing, and a succesful surgery. Andrew later told us that little Joshua's idea of laying hands was to repeatedly push on Andrew's cheek with his little fist.

That eventing, at home, Andrew was dancing in the living room, while Rick and I looked on in amazement. These three days were extremely hard on Rick and I, as we battled the Doctor's advice with what we were witnessing. We talked, we prayed, we cried, we laughed, we fought, and we prayed some more. Sunday night, we spent over an hour in the car (where we have most of our adult conversations. The only place out of ear-shot) parked in our own yard, and tried to put into words what we both were feeling. Monday morning, the day of Andrew's surgery, we woke up at 4:oo am, both of us praying for clarity. We got Andrew ready, and loaded him into the car. while on route to the hospital, we came to an agreement. We knew what we had to do.

When we got the hospital, at our scheduled time to begin the anesthesia process, we told the receptionist we were cancelling the surgery. After speaking with the doctors, knowing we were doing this against medical advice, we gathered all of Andrew's medical records and MRI's and headed up to Duke, not even knowing how to get there. TGF verizon navigation option on our cell-phone. When we showed up at Duke, without a referral or appointment, crying for them to take our records, we know how we must have looked. When we called our family and friends, we know how we must have sounded.

They granted our appointment! The two week wait was agonizing. Fortunately as you may know, when we finally got our appointment, all of our prayers were answered. We were told that the cyst on Andrew's tumor had imploded, and that if we had gone through with the surgery, the results would have been devastating! Thank-you Lord Thank-you Lord. Thank-you Lord.

Andrew's Story

Taken off of Andrew's Fund-raiaing page. To view the page, click here


Hi!

My name is Andrew, and when I was about 6 years old, I started to get very sick. I didn't want to eat anymore! I lost a lot of weight. Then it got worse. When I was 7, when I did eat, I threw it up. Food was really disgusting to me, and I hid my food in many different places. I went to the doctor a lot, but they never helped me. I got dizzy all the time, and sometimes I couldn't see anything. I got really bad headaches, and my neck hurt. One day, when I was 8, I went to the doctor again, and everything changed. I got a CT scan! The next thing I knew, I was on my way to the city to get a MRI. I was scared, and my family was crying. I was also happy though, because I knew that these were the doctors that were finally going to help me! The next day, I had a surgery.

I don't remember much about the surgery, or the month after the surgery, when I was in ICU. The doctor said that because my brain tumor was on my brainstem, he couldn't get it all out. He also said that it was huge! Then I went to rehab. I lived in rehab with my Dad for 2 months. I learned how to use my arms again, and I learned how to stand up. I was in a wheel-chair because I couldn't walk. I also couldn't eat, because the food would go down the wrong hole. They did shock treatments on my throat though, and right before I went home, I learned how to eat! I was so excited when they took out the feeding tube, and I ate everything!

When I went home, I kept going to rehab 3 times a week, and I learned how to walk again. I got well enough to go back to school. I stayed healthy for a year, but then I got sick again. I went to another doctor, and got radiation lots of times. They had to put my head in a plastic mask and I had to lay down. The mask was bolted to the table so I couldn't move. I went 28 times. I was really tired, and I lost my hair in 2 big spots on my head. Plus, I couldn't go to school.

I got better for 7 months, but then I got sick again. I was really sick this time and I went back to using my wheelchair. My doctor was going to do another surgery, and I was scared because I almost died after my last surgery. My parents cried all the time. Then, 3 days before my surgery, I went outside to play! God made me feel better, and I could walk again. I was so glad when my parents cancelled my surgery. We switched doctors, and now I go to Duke. They keep giving me MRI's, and then we wait for the next one. I am feeling very good right now.

My tumor is a JPA. The doctor's say it is the best brain tumor to have, in the worst location. My parents said that most kids who get this tumor get to have it taken out by their doctor. My tumor can't come out because it is on my brain-stem. All of the money collected on this page will go to JPA research. I hope they can find a cure for my cancer.

Thanks,

Andrew


ETA: Andrew's fundraising page is now closed. To learn more about Juvenile Pilocytic Astrocytoma, or to make a donation in Andrew's name, go here. His is "Team Andrew"