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?