OCT 03

NOV 03

DEC 03

JAN 04

FEB 04

MAR 04

 

 

 

 

 

 

APRIL 04

MAY 04

JUNE 04

JULY 04

AUG 04

SEPT 04

OCT 04

NOV 04

DEC 04

JAN 05

FEB 05

MAR 05

 

 

 

JULY 2004

 

THURSDAY JULY 1ST , 2004

 

IAN - -3D CT SCAN 10:00 CHILDREN’S

Ok we are all up in the trailer by 0700, Dad and Dylan are along on this trip. We head out the door by 8:15 for the appointment. Mom even packed Ian's "book" and his most recent MRI's, in case they need any additional information.

 

We arrive in Boston around 9:30 and head into Radiology. The boys have brought Game Boys and Yu-Gi-Oh is on the TV, so waiting is NOT a problem.

 

Ian has decided that Mom will accompany him into this CT scan, since she missed the last one and Ian says these are “easy”.

 

We go in and have the scans done and wait until the films are checked for clarity, etc. A few minutes pass and we are given the ok to leave.

 

Keith and I are discussing stopping at the Blood Donor Center on the way out, and then Dylan decides that he has to “go”.

 

With that done, we are JUST about to head out the door when over the PS we hear “Ian Allen please report to Radiology, Ian Allen please report to Radiology” Ok so what’s up with this, don’t tell me that with their “new” software they have deleted the scans they just did. Well at least we won’t have to drive back in.

 

We arrive at the same desk, and ask about the page. Turns out that the radiologist has SEEN the scans and wants a few more. Hmmmmmmmm this in my book doesn’t sound so good. But like Ian said, it is an easy test and we complete round 2 in record time.

 

Because they made us come back, we are given a FREE pass to the parking garage. When they are done I ask if they are “sure” because Ian has no intention of stopping anywhere on the way out the door. The nurse puts us in another room to double check and does take the new MRIs for them to look at. When he returns we are given the green flag to go home. Ian grabs my hand and drags me to the waiting room and tells Dad and Dylan “lets go”

 

We get to the elevator and have to wait, only to see the nurse come around the corner and say “oh just wait up a sec will ya?” then smiles and says “just kidding” Ian chases him back around the corner laughing.

 

Ian says no blood donations today, he has a beach with his name on it waiting for him in Taunton. So back we go to the campground and the beach, Mom takes a nap, and the 3 boys head to the beach, just as mom finishes lunch and was going to head down, they return, we putter around a bit and it’s off for a bike ride.

 

Ian still wants to have a campfire somehow, so we decide to borrow the fire pit on an empty site, no one bothers us and we have smores, for real. Now it’s a camping trip. Well since mom has to go to work in the AM, she heads to bed, and the boys (all 3) stay up watching movies.

 

FRIDAY JULY 2ND , 2004

 

Well got awoken by the stupid dog, going spastic, at 3:00 in the morning so I figured I would take him out, (just in case) done? good, now I notice that there is thunder off in the distance. So I move all the bikes under the awning. And the dog and I head back into the camper.

 

Then the storm showed up, well the dog was so scared, he was awful. The storm was like Armageddon. The rain, the wind, the thunder and lightening, man I feel bad for all the folks in tents around us. This thing even took the power out at the camp ground. But the dog is now insane because of the storm and won’t stop shaking and panting, etc. even the doggie downers I give him in these situations isn’t working tonight.

 

Dylan woke up and since Mom was in the living room keeping the dog quiet, he went up to sleep with Dad. Ian slept thru it. So much for sleeping in this AM. Never again will the dog go camping, he just can’t take it any more. (Neither can I)

 

Here are a few photos of the trip. Amazingly I did not take many. It was a very relaxing few days.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


here is a view of the inside

 

 

 

 

 


 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


View of the boys room

from mom and dad’s room (they

have 4 beds and their own TV/DVD

player)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


Here’s Mom and Dad’s room

 

 

 

 

Mom headed off to work at 0730 and the boys took the trailer back to the house. They had a blast, and already want to come back.

 

SUNDAY JULY 4TH,2004

 

No major plans, Mom worked and then we headed to the Brockton Fair for the fireworks, the kids rode a few rides and we wandered around a bit. We got home around midnight. Only 3.5 hours sleep ewwwww!!!

 

TUESDAY JULY 6TH , 2004

 

Still trying to get the CT Scan results, actually talked to Dr Z’s secretary, and she will call me back if she can get another copy of the results. She said that they mailed me a copy on Friday and that I should have it today. We shall see.

 

Still no info in the mail. Keith brought the boys to work with him and I took them home. We ran quite a few errands and then headed home.

 

WEDNESDAY JULY 7TH , 2004

 

Mom is swamped under things to do, laundry, phone calls, Dr Appointments., to make and reschedule. It just never ends. Trying to find a cheap ladder since all of ours have finally given up the ghost. Spent an hour or so on that.

 

Keith was busy around the house, taped over the vent that snapped off the trailer while camping, I have to try and find a replacement for that. Had Keith take digital pics of it, so I can show it to the guy at the RV shop.

 

Called Dr. Z’s office AGAIN, and was told that she would find out and call me back (gee I have heard this song before and it’s getting old)

 

The boys rode their bikes in the AM and headed to Colin’s (neighbor) pool for the afternoon.

 

Mom spent the afternoon spinning her wheels, with so many things on the list of things to do, I got nothing done.

 

I called Dr Z’s office yet again at 4:00, and she STILL doesn’t have a copy of the report. And tells me again that they mailed me a copy on Friday.. hmmmm would I still be calling you if I got the letter?????????

 

She spoke to Dr Z and he recommends that we see ANOTHER Dr. this one is a bone lesion specialist, and he is thinking the thing needs to have a biopsy taken. Ok who moved the floor, when is this going to be enough?? How much more can my tough guy take?? Dr Z’s secretary gives me the number for the new Dr. and I call to make an appointment, she is just leaving for the day and will call me back 1st thing in the AM. I am left to wonder, worry and fret, for the rest of the evening.

 

Here is a link for additional information -

COPIED from the Children’s Hospital web site

 

Condromas

 

 

THURSDAY JULY 8TH , 2004

 

Well true to her word Dr G’s secretary calls me at 0812. and we schedule Ian for his next available appointment. Unfortunately it is not until 8/17/04. We’ll be there I tell her and then call Keith so he can plan for the day off also.

 

Another update as of 2:30pm

 

Ok after an errand or 2 the boys and I arrive home, Aha!! The “letter” is finally here. While it is not BAD news, it is not GOOD news either.

 

“The cystic lesion is not larger in site than the last exam, but does thin out the lining of the bone slightly. This increases the risk of fracture with contact sports and probably should be avoided” (gee I knew that part already) he then recommends the new Dr. and then goes onto the good and bad news all in 2 sentences. “This cyst continues to appear of a BENIGN and safe type but can enlarge with growth, increasing the chances of fracture.

I would say that bone grafting of the cyst along with a biopsy and possible support with metallic fixation would be a good consideration.”

 

Great, that is what I thought would happen, now how do we explain this one??? His leg doesn’t hurt, but we have to fix it anyway, by taking a piece of his hip bone and putting it in place of the hole and possibly a metal rod to boot. At least the summer will be mostly over by the time they may get to it. And I am not telling him anything until JUST before the appointment.

 

Hopefully we can still go to Maine for the last week in August. I know THAT would really upset Ian, if that trip got cancelled

 

 

FRIDAY JULY 9TH , 2004

 

IAN - -DOWN TO 7MG PREDNISONE (4 WEEKS)

Height growth should resume sooooooooon J

 

I emailed the new Doc with some questions, while in his reply he didn’t give me much information, he DID tell me that if he does a bone graft, he uses bone form the bone bank and NOT from the patients own hip. That in itself makes me feel better.

 

Ian had a friend sleep over, and Dad will drop the 3 boys over at the friend’s house around 0900 since he has to work tomorrow also.

 

SATURDAY JULY 10TH , 2004

 

Mom gets all the errands done on the way home, since the boys are at a friend’s house. They have spent most of the day in the pool and playing video games. And neither one wants to come home when I finally arrive at 6:00pm to get them.

 

SUNDAY JULY 11TH , 2004

 

We have all the chores done by 0800, and then hop in the car for our trip to MAINE.

 

I gave Dylan his birthday gift early, since I knew it would help on the ride home. He finally got the Game Boy SP he has been waiting for, and 2 new games.

 

We were on the road at 0813 and to South Portland by 11:00. 1st stop is the Cookie Jar, the best bakery in Maine. Then it is off to Great aunt Connie’s.

 

I had been under the assumption that Keith had gotten a hold of the family that we had headed to Maine to visit. This was NOT the case, we arrived at Connie’s around 11:20 and she had plans to go out at 11:30. She was quite disappointed that she could not visit with us.

 

Then when I asked if he had spoken to Bruce and Ellie, (relatives from Florida that prompted the excursion to Maine in the 1st place) He said nope, he had not been able to get in touch with them. OK so HOW do we find them I ask?? No idea was the answer. Oh well, we can still have a great day. It’s off to DiPetro’s for Italian sandwiches (a childhood favorite of Keith’s) and then off to Portland Head lighthouse Park for a picnic. Then the boys and Dad headed for the beach. The beach here is very rocky and choppy as you can see.

Dad and Dylan

 

Dad, Dylan & Ian

 

 

 

 

 

 

 


 

 

 

 

 

 

 

 

 

But the good site was seeing Ian PLAYING in the water and in the sand. Not sitting like a bump on the beach like he did on the last trip to Maine (just prior to his diagnosis with the JDMS)

 

Well Ian got cold (Ya the water in Maine is cold) and we wondered what was next on the list. I suggested we head south to OOB (Old Orchard Beach) our FAVORITE place in Maine. That met with a rousing approval from all the boys.

 

We stopped at the Flea Market and Mom picked up a sand pail and some suntan lotion, since this had not been on the itinerary. Then off to the beach, well we did a 1st, we actually DROVE through OOB center. Normally we are walking since the campground is just off the center. The place we ALWAYS camp is WILD ACRES FALMILY CAMPGROUND it is an awesome place, and for those of you who want to be within walking distance of the beach, stay on their OCEAN WALK section.

 

Of course today, there is no where to park near the PIER. So we follow the road towards the campground and familiar territory. We park at the RR tracks and walk to the beach.

As you can see this is a more foot friendly beach LOLOL

 

Hmmm think hes having fun???

 

No Worries Dr S. he has on

SPF 45 and it is 4pm

 

 

 

 


 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The boys and I have an awesome time on the beach; it is great to see Ian out in the ocean with his dad and his brother, building sandcastles. RUNNING AROUND and doing the things he should have been doing last August.

 

Man do I wish we had the trailer with us and could just stay. The boys drop Mom on the Beach and head for the water. Mom gets to try out her NASCAR.com to go program on her phone, since I am actually away from the TV on race day.

 

And doesn’t it just figure mom’s favorite driver (TONY STEWART) WINS today and I don’t get to see it, Dad says I have to stop watching races now and stop jinxing my driver, hmmmphh.

 

 

Congrates

TONY

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We head for home later than usual, since we are all enjoying ourselves so much. It is 5:30 and we still need to stop for supper.

 

We arrive home at a little after 9:00pm; Mom heads to bed and leaves the unloading of the car to her guys.

 

MONDAY JULY 13TH , 2004

 

Mom played hooky today, she got up late AGAIN, and just said oh well, not gonna play today.

 

Kids and I had a good day, Ian wanted to learn how to use the sewing machine and he did great, after prowling through mom’s craft supply closet, he made himself a pillow with some left over fabric and then made his brother one too.

 

It’s always a good thing to know, how to run a sewing machine and hand sew. Even for a guy.

 

PS : I finally have pictures from Keith’s Graduation clic here and go back to May to see them.

 

TUESDAY JULY 13TH , 2004

 

Not much to tell today, it was a rainy quiet day, but I have a few new photos of the cats, so I guess I’ll share those

Hmm looks as if

the boys are race fans too

 

And who say cats are afraid of water???

Check these 2 out.

 

 

 

 

 

 

 

 

 

 

 

 


 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

WEDNESDAY JULY 14TH , 2004

 

DYLAN - -DR LAURA, ALLERGY FOLLOW UP

IAN - -5 WEEK BLOOD WORK @ DR LAURAS making it all one trip

Well today was lousy weather wise. So the kids got to play Video Games undisturbed by Mom, since there was nothing else for them to really do.

 

Decided to get ready and head out around 2:30 and got Ian’s EMLA. Well then he had a meltdown, seems it is getting to him (can’t say I blame him there) I just hugged and soothed till, it slowed and we headed off to the Dr’s.

 

Dylan checks out fine, on his hearing, just the typical “selective” hearing, or lack of paying attention when someone is talking to him. We talk to Dr. Laura a bit. I show her the “letter” from Dr. Z and she makes a copy for Ian’s file and writes up the blood work orders.

 

Then it’s off to the lab, Ian is having a harder time than usual, but nothing like at the beginning. And to his surprise, this tech doesn’t hurt him like the last one did. All done and we’re outta here!!!

 

Then we head to A.C. Moore a craft store, to spend a birthday gift certificate that Ian has had for months. I got out only spending $24.01. I got stickers and scrapbook paper that I hope to use on this web site. (Getting more and more creative as this thing grows.)

 

Then home and supper and to bed.

 

SUNDAY JULY 18TH , 2004

 

DROP TRAILER AT NHIS FOR USE NEXT WEEKEND,

RV LOTS OPEN AT NOON

 

Ok, we set off for NHIS around 0930 and arrive promptly at NOON, only to find that RV’s have been arriving since Friday at 5:00pm. The lot sections start at L11 and work back to L1 with L11-L7 being for Handicap RV’s well we were already into L3 by 5 minutes after the lot was SUPPOSED to open.

 

We are placed in our spot, only 1 in from the road, which is nice, however the spot is only

16 ft wide and our RV with the Awning is 25 ft wide.

 

Takes them awhile to figure out what they are doing, and

the 900 heat doesn’t help any.

 

Once we are all set up this is the amount of space that

we get. In this space we are to have the awning, the slide

AND THE TOW VEHICLE, I wish I knew what these folks

were smoking to think that with the newer rigs that all this

will fit in that amount of space.

(Note: in the photo there is NO vehicle – even my small

car would not fit in the allotted space)

 

We have lunch, and then head for home, we hit traffic

in Boston, and arrive home around 6pm and just finish up

the household chores.

 

WEDNESDAY JULY 21ST , 2004

 

MOM, IAN AND DYLAN: HEAD TO NHIS FOR

NEXTEL CUP RACING WEEKEND

 

The boys and I head out around 8:30; we make it to the NH border in 67 minutes and to Wal-Mart in Concord, NH (10 minutes from the track by 10:00). We pick up the last of the supplies needed and the ice for the cooler (only $1.00 per bag here as opposed to $2.50 per bag at the track) and then head in to the spot.

 

 

The Rules are quite tight now, only 1 vehicle is allowed with the trailer. I do not have a tow vehicle sticker on my car; Keith has it on the truck at home. (I have made a copy of the sticker to prove that I ACTUALLY have a space in the L Lot and so they will know I belong there and will tell them to come with me, to prove there is ONLY 1 vehicle with the trailer)

 

We drive right in, no one looks twice at us and head to the trailer and get unloaded, it is again about 900 in the shade, and there is no shade J.

 

I know the kids will be bored, so I take them over to the movies in Concord, we see

Shrek 2. They have a great time, tho I forgot to brig hear plugs for Dylan. We then go to the local mall for dinner and then head back to the trailer.

 

I have to pick up gas for the generator and stop just outside the track to do this. We pull out of the station and meet “Billy Bad Ass” security stooge.(give them a yellow shirt and a lil authority and look out)

 

As I turn into the track he stops me, as I try to explain where I am going, he reaches INTO my car ( I have the sticker copy – in a baseball card sleeve laying on the dashboard for easy access) and GRABS the sleeve and demands that “THIS HAS TO BE AFFIXED TO THE WINDOW” then goes on to say “this is a counterfeit sticker and IT’S MINE” he then calls over another person, this one has a white shirt and a spiffy security badge. I try to explain I have 2 small kids, a can of gas in the trunk and I am the ONLY vehicle with the trailer, and the tow vehicle is at home. Man, these 2 make a great pair. I am made to feel like a criminal and told to wait “over there” until someone can escort me to my trailer and MAKE SURE there is no other vehicle with the trailer.

 

Well we get back to the trailer and unload, I practically knock over the grill, since the trucks across the way are now here and I have no swing room. I speak to the people on the end of the row, and then move my “highly illegal” vehicle down to the end of the row. NOW we have enough room to move.

 

THURSDAY JULY 22ND , 2004

 

We spend the day wandering around the track, watching Haulers arrive and generally checking the place out and relaxing.

 

I try to find a friend who works at NHIS, but no luck, he is on infield duty and not the tunnel. Oh well.

 

FRIDAY JULY 23RD , 2004

 

PRACTISE, QUALIFYING AND FEATHERLITE MODIFIED RACE

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

This is the view from where we sat to watch qualifying, we went to 1st practice at 11:00 and then to the sponsor trailers for something to do,

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


Looks like they had fun, tho they would hate to admit it.

 

Then we headed back to our trailer for lunch and then to the qualifying.- tho we missed most of it, since the sponsor trailers took more time than I expected. I did get to see my driver qualify, so I was happy.

 

The boys did not want to see the Featherlite Modified race and we decided to get Ice Cream and head back to the trailer and then the heavens opened up. We were drenched, tho cool finally LOLOL.

 

Once back to the trailer it was, try to get some of the water off the tarp and lower one end of the awning to get rid of the water on top. I didn’t do too bad for being there solo with the kids. Then I got the grill going and we had burgers and dogs for dinner.

 

Keith and his mom were to arrive around 11:00 but got off to a late start.

 

DAD AND GRAMMA B ARRIVE AT NHIS 1:00AM

 

SATURDAY JULY 24TH , 2004

 

PRACTISE, HAPPY HOUR AND BUSCH SERIES RACE

 

Since we had so much to do, we never made the practice sessions L. We got the kids to the MRO tent and they painted pinewood derby cars. Mom and Dad left them with Gramma and went to get gas for the generator. We needed to go to truck (parked at the front gate) and since we were there we went to the flea market

 

Then back to the trailer for lunch. While putting around the trailer getting ready to go to the Busch Race, I checked my email and got the most

AMAZING NEWS!!!!!

Ian’s blood work came back and it is 99.9999999% normal

Only the ALT is off and then only by 1 digit

 

 

P

CPK or CK

Aldolase

Von Will

LDH

AST

ALT

10-15-03/Wed

~~

516

~~

~~

~~

~~

~~

10-22-03/Wed

~~

501

15.3

-

527

58

25

10-25-03/Sat

~~

130

15.3

170

489

37

25

11-05-03/Wed

50

35

8.3

261

322

22

19

11-26-03/Wed

50

23

6.5

301

319

22

24

12-24-03/Wed

50

36

8.1

241

290

19

20

01-21-04/Wed

45

39

9.3

205

265

21

16

02-26-04/Thu

20

56

7.8

107

298

23

17

04-21-04/Wed

10

92

6.7

158

310

26

19

05-10-04/Mon

9

84

9.5

~~

298

~~

~~

6-9-04/Wed

9

74

7.5

196

256

25

15

 

7-14-04/Wed

 

7

79

7.7

125

203

24

31

NORM

 

4-175

3.0-12

5.0-150

110-295

2.0-40

3.0-30

 

With lunch complete and snacks packed, it was off to the track. The Busch race was good, tho lotz of cautions.

 

Jamie McMurray

in new Busch ride

 

The kids did not want to watch the Busch North or the rain rescheduled Featherlite Modified’s.

 

So the kids and I head back to the trailer and Keith and his mom stay for the races.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


Mom in Law in hat I made.

At her driver’s trailer with Dylan.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

They got back to the trailer around 8:30, and we headed out for a walk. Back to the trailer and then to bed.

 

SUNDAY JULY 25TH , 2004

 

NEXTEL CUP RACE

 

 

 

 

JEFF BURTON/MARK MARIN

 

 

 

 

JEFF GORDON /DALE JARRETT

 

 

 

 

 

 

 

JEFF GORDON JEFF BURTON

TONY STEWART/MICHEAL WALTRIP

 

 

 

 

 

 

 

 

 

 

 

 

Looks like he had a busy day

 

 

 

 

 

 

 

 

 

 

TUESDAY JULY 27TH , 2004

 

 

This was a quiet day at home. I offered to take them to the movies and pizza but he didn’t want to. Oh well, as a friend of mine stated, don’t say I didn’t offer.

 

This is probably one of the 1st birthdays Dylan has been AT HOME in a long time, seems we are always on vacation for his birthday. Hope the kid doesn’t feel gypped that he never has a party.

 

WEDNESDAY JULY 28TH , 2004

 

Dad’s idea, we head to McDonald’s for an Unbirthday lunch, then to Shaw’s to pick up a cake. We then have cake at home, before Dad heads to work.

 

We have another quiet day at home, since Mom has to head back to work tomorrow.

 

SATURDAY JULY 31ST , 2004

 

POOL PARTY AT IAN’S FRIENDS HOUSE.

 

The boys had a great time and we will be seeing the friend again, since he is going camping with us in a few days.

 

 

OCT 03

NOV 03

DEC 03

JAN 04

FEB 04

MAR 04

 

 

 

 

 

 

APRIL 04

MAY 04

JUNE 04

JULY 04

AUG 04

SEPT 04

OCT 04

NOV 04

DEC 04

JAN 05

FEB 05

MAR 05

 

 

 

 

 

 

 

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