Leapyear Updates

Written 2/29/08

Family updates

Andrew-



we went back up to Duke yesterday. We left in the morning after the rounds of dropping off kids. Fortunately, we didn't run into any traffic issues and arrived at our 1:00 app. at 12:55. Talk about cutting it close. They gave us great news. The PET showed very little activity in the tumor. Although they disagree with the treatment Andrew received in Charlotte, and are concerned about the side-effects, the radiation is working. As I already reported, the tumor has shrunk in size, the cyst caused by the radiation is gone, and Andrew is doing well right now. At this point, they recommend just watching the tumor, and Andrew, to see what the radiation is going to do. No chemo at this time!!! Unless Andrew shows symptoms, we go back in 3 months for testing.

They were concerned though, about the amount of secretions in his lungs. They explained that where the tumor is located on his brain-stem controls lung function, and when he gets a cold, it is and will be very difficult for him to cough out the phlem. They did chest x-rays to make sure that everything in his lungs right now is just phlem, not food, considering that the tumor lays on the nerves for the airway path and swallow. We know that his gag reflex is working right now, and pray that it continues to work, as the two months Andrew had his feeding tube were very hard and he loves to eat. So they will call us with the results of the chest x-ray, if there is any food, there would be an immediate end to his eating, a feeding tube placed, and back to shock treatments on his throat. We are confident that this is not the case right now. Rick and Andrew are so connected, he has proven time and time again that he somehow knows what is happening inside Andrew's body. It is amazing. We left with an antibiotic to help with any lung issues, if indeed it is just phlem. So, we are very pleased. This was fantastic news, and the Lord is so good to us, considering that just over a month ago, Andrew could not walk, was showing terrible symptoms, and we were prepping him for surgery.

Make-a-wish comes tommorow to interview Andrew. He is now saying that his wish is to go to disney. I don't know how long it takes to take the trip, but Andrew is doing better in the last month than he has in two years, so I pray the trip is soon, in case he takes a turn for the worse.

Brooke-



She is focused on getting her grades up so that she is not kicked out of the IB (Internationl Baccalerette) program. Since it is a magnet program, the school she is in is not in our district, so she would have to transfer to a different school. Although I deleted the posts about what she is going through, I do want to say that if you have a teen or pre-teen, I highly recommend getting their e-mail password and checking it periodically. Maybe nosey, your kid may get mad, but it is our job to protect them.

Brittney-



doing well, nothing out of the ordinary, beautiful, sweet, and funny as ever.

Kyley-



still studying for the upcoming county spelling-bee. Cross your fingers for her. This will be 3/11, and we happen to have a Duke trip the following day, so it will be her turn to go. A little break after all the stress.

Rainia-



sweet and sassy as ever, she is progressing quickly in gymnastics, and it is the perfect fit for her given how little and spunky she is. She has grown a bit this year, her sz.6 pants are finally a little short (she is 9).

Jake-



Lord help us with that one. I don't know how he comes up with the things that he says, but his wit and sarcasm are way too advanced for a 5 year old.

Josh-



He got his first visit from the tooth-fairy. He lost 2 at the same time. SO cute.

We are struggling with field-trips. Brooke and Brit $400 a piece, Ky and Andrew $300 a piece. Rick needs to go with Andrew, so another $300. So that comes out to $1700. A caring person at Andrew's school put $300 toward their field-trip. THANK-YOU!!! I will post later
-Heidi

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.

Stung by the Bee

Written 2/15/2008

Quick Update- Kyley, our 11-year-old, just won her school spelling bee!!!!! I am so excited. I never thought that I would have such strong feelings about spelling, but when it got down to her and one other boy, my heart was beating out of my chest. I am so proud of her. Her picture will be in the newspaper, she will be on the local news station, and she will receive a trophy. Next month, she goes to the county spelling bee, then if she wins, it goes onto state, and national. I was worried, because with everything else going on in our life, I haven't had time to quiz her or work with her at all. She still won!!!

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?

Parenting and Tears

Written 2/6/2008

It has been a good day, although we are dealing with some behavior issues with one of the girls at school. Nothing major, but it seems like lately the teacher phone calls are getting more frequent, and the grades are getting worse. I wonder if she is just being herself, or if she is trying to get attention. In such a large family, with the health issues on top of it, I will always wonder how the kids are affected. They usually amaze me with how well they handle everything.

I, on the other hand, am not handling things too well these days. I had an emotional breakdown two nights in a row. One because the cat bowl was missing, and the other because one of the kids moved the clothes that I had just folded and it took me 30 min. to find them. I actually cried over both of these things. Talk about misplaced emotion.

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.

Transfer

At this time, I need to transfer the items from another site to this one.

Discarded

Recent Conversation:

"You are so disgusting. And retarded. Do you know what that makes you?"
"Discarded?"
"Exactly."

Septic System

There is this show on one of the hundreds of channels of nothingness that I sometimes watch. It is called Dirty Jobs, and has a man Mike? Who goes around the country trying out the nastiest professions known to man. These are the jobs that No one wants to talk about or acknowledge, but are needed for our country to function properly. I once saw an episode where he was a sewer worker. I don’t recall exactly why they were swimming in the sewer, but they were. This was so revolting to watch that even though I don’t have HD, I could literally smell the putrid, vile, horrid, foulness seeping out of my television. I almost threw-up.

That is the vision I get when I think about my emotional state in the last month. The things I’ve been confronted with, they are the contents of that sewer. And I am swimming around in the stuff, holding my nose, trying not to vomit. So mostly I have been wading around at waist level, some of the time I was up to my neck in it, and for a couple of days it was over my head. I could actually taste it. I am here to report that right now, today, I am only in it up to my knees. And? I can see a spot ahead, somewhere in the distance when I will be on solid ground. I’m not positive what this spot looks like, but I know that it is there. And that is good enough for me.

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"

Cast of Characters

Who We Are:

I am Heidi, aka Doodlebelle. I am trying to figure out how to be a parent. I am also trying to figure out how to survive/defeat my past. I have full-custody of four great kids. I enjoy reading, dancing, singing loudly in the car, laziness, losing my shit, and pms-ing.


This is Rick aka Big Mac, aka The King. Every Queen needs a good King. He is trying to figure out how to be a parent. He has full-custody of three great kids. He enjoys playstation, sports, procrastination, freaking out, and talking before he thinks.


This is Brittney, aka Shyness. She is 13 yrs old, and is the twin of Brooke, and the daughter of Rick. She enjoys dancing when no one is looking, competitive cheerleading, blaming her sister, and completely ignoring her parents when they ask her a question.


This is Brooke, aka The Fearless Leader, aka Trouble. She is outgoing, funny and popular. She is 13 yrs old. She is the twin of Brittney, and the daughter of Rick. She enjoys shopping, her friends, 4-wheeling, sports, competitive cheerleading, getting in trouble at school, dating people her parents disapprove of, and arguing with her siblings.


This is Kyley, aka Berd, aka The Genius. She is Smart, funny, and extremely weird. She is 11 yrs old. She is the daughter of Heidi. She enjoys reading, horses, watching TV, and sighing heavily when asked to do anything.


This is Andrew, aka The Amazing Recovery Boy. He is 11 yrs old, and lives with brain cancer. He is the son of Rick. He is funny and amazingly resilient. He enjoys playstation, computer games, drawing, talking back, and trying to get out of chores and school-work.


This is Rainia, aka Sassy. She is the daughter of Heidi, and is 9 years old. She is bubbly, fun and affectionate. She enjoys playing school, being a princess, eating, competitive cheerleading, telling everyone else what to do, and bossing around whoever she can.


This is Jacob, aka Jake, aka Rotten. He is 5 yrs old, is the son of Heidi, and the twin of Joshua. He is funny, sarcastic, and entertaining. He enjoys action figures, bugs, dancing, being the center of attention, trying to annoy people, getting in trouble at daycare, and ruling this family.


This is Joshua, aka Josh, aka Prince Charming. He is 5 yrs old, is the son of Heidi, and the twin of Jacob. He is loving, sweet, and affectionate. He enjoys Computer games, Playstation, sports, singing, and mimicking other people to try to get a laugh.


To contact me: iamdoodlebelle@gmail.com

About Us

Contact: iamdoodlebelle@gmail.com

We are a blended family with 7 children, one of whom has a brain tumor. The DoodleBelle's are: Heidi, Kyley 11, Rainia 9, Jacob 5, and Joshua 5.



The Big Mac's are: Rick, Brittney 13, Brooke 13, and Andrew 10.







We are so glad that we have eachother, and God, love, joy, humor, and fun are what get us through this crazy life of hospitals and treatments, step-family issues, financial hardship, and parenting such a large family.

I, (Heidi, a single mom) and Rick (a single dad) met when I bought a car from him in April 2003. We dated for some time, and decided to introduce our children. The kids hit it off immediately, enjoying eachother's company and loving doing things together. Throughout this time, Andrew was sick, getting severe headaches, and losing weight. Rick took him to many doctors and hospitals, who kept saying that Andrew was upset over his mother, who struggles with mental illness. Andrew got progressively worse, having vision problems, refusing to eat and vomiting after every meal. Finally Rick got a doctor to refer him for a CT scan. This was August 8th, 2006. The next day, Andrew was in emergency surgery to remove the huge (baseball size) tumor that was growing on his brainstem.

When Andrew awoke, he was paralized on his right side. He had a trachiostomy, and a feeding tube. He had a permanent shunt put in to drain excess fluid on the brain. Andrew struggled in the PICU for three weeks. When finally able, he was transfered to the hospital's rehab center, where he finally after two months, through shock treatments, gained back the use of his gag reflex, allowing him to swallow food.
Throughout this time, Rick never left Andrew's side. Brooke and Brittney, Rick's daughters, moved in with me and my four children. Still unable to walk, without the use of his right arm or left eye, Andrew was released on Oct. 17th, 2006. Because he needed homebound school services and intense rehab three times per week, I quit my job at Rick's car-lot where I was working, so that I could take care of him, and Rick could return to work. Rick and Andrew moved in with what had become the seven of us, making nine.

Andrew rapidly learned to walk, and returned to school in Jan. 2006. He continued to have PT and OT, through the school, and through private practice. How wonderful he did, until the tumor started to grow again. Andrew had 28 rounds of radiation-treatments in March and April of 2007. Unfortunately, around this time a cyst began to form on his tumor, creating more and more pressure on his brain, bringing us to the first update entry.

Oh-Yeah, plus we are engaged as of Christmas Eve, 2007.