MRI results

We got back late this evening. I know you are dying to know, so I wont keep you waiting. The tumor looks the same! That is fantastic news. Also, that is one Drs. opinion. The other Dr. said that he thought it looks like it went DOWN a small amount. We are ecstatic, and counting all of our blessings. I know that when we switched our medical team from Charlotte to Duke, they told us that radiation would NOT have been their choice of treatment. We know what the side-effects are. But, thank God, the stuff is working!!! I hate it that he has known and unknown long-term damage from the radiation, but Holy crap, it's working! I guess we are lucky, as far as statistics go. I know that if we had started our treatment at Duke, radiation would have been a last-resort, it would have come after chemo. I don't know why the Charlotte Drs. pushed for radiation BEFORE chemo, but as of right now, today, I am grateful that they did. (That is said with full some not enough understanding of the long-term effects that might pop up later.)

One of the Drs. even said something about not needing another MRI for a year. Of-course, being a worry-wort, I said I prefer 6 months, and the other Dr. agreed. So six months it is. We wont go back until August, unless Andrew's balance, coordination, etc. gets worse.

Thank-you so much for keeping us in your prayers, they are working!

I'm scared.

Pray for us, or cross your fingers. We are headed up to Duke. Andrew has another MRI tomorrow. Let's pray that this isn't the one where they tell us he needs to start chemo. I am definately going with them, because I don't want this to happen.

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.

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...

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!!!