OCT 03

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   Well another normal day/ had PT at 4:00pm, Mom was just to pooped to go in with him, so bro and I stayed in the waiting area. He is doing well and even got a rubber band to exercise with. (tho mom had loaned him one of hers already)

Not much else to report.



     Another appointment with Rachel, picked up the boys at 11:00 form school. Mom had spent the AM trying to finish the Xmas shopping. Headed to Boston, not toooooo much traffic on the main road, but Rt. 9 was a hassle.

     Arrived in plenty of time, got to the floor about 12:40 and just settled inwhen Rachel arrived to take Ian in, but this time she wanted to see ALL of us.

     WE told her about absolutely NO tears at  the last blood draw, and she was QUITE impressed. Showed her the photo of Spiderman’s return, and talked a bit. Ian was getting giggly, and I asked him why was he upset? He fibbed he wasn’t then the façade fell. Rachel and I explained that THIS is what we were talking about, it’s OK to be upset over the fact that you are sick. You don’t always have to be a trooper. It ended quickly and Ian was back to ignoring the fact that he is sick, which seems to work for him.

     After a few more minutes, lil bro and I headed back to the waiting room and Ian finished up with Rachel. While they were doing this I went downstairs to Dr. S’s office and asked if I could get a copy of Ian’s test result’s rather than waiting till the next visit.

     They would have them printed up and be right out. While we were waiting  Dr. S. showed up. She did get my email, and apologized for not getting back to me, not a problem I told her she is busy making people better. She thought something was wrong with Ian, nope, just want test results, she pulled them up for me, we chatted a bit about Ian’s cold and she told me to maybe wait 7-10 days and then have Dr. Laura take a look at him, just to be safe,

     Arrived back upstairs only to have Ian all done within a couple of minutes. Seems we are ALL done with Rachel and she will be here if we need her. Ok now we are back down to 2 Drs not 3, and no trips to Boston until 12/23.



     I am soooo not into Christmas this year. Work has been very busy, and been a little tough t find time to go shopping with all the Dr visits, husband being in his next to last semester at school and me I my 1st.

     This weekend we did breakdown and FINALLY get a tree. Tho This year I opted for an artificial one, (we have had real since I got married)  I just didn’t want to deal with the watering, the mess and picking the needles out of the carpet for the next 7 months. I checked with the boys and they were ok with the fake tree idea as long as we got one.

     We normally move some furniture into the cellar and make room for the tree that way. Since the cellar is a mess We really don’t have anyplace to put a tree. But we HAVE  to have one.

So out we go to the stores…. That is a harrowing trip. There was of course slim pickin’s left at this date. We manage to find one that fits the pocketbook as well as the room. We take our prize home and open it up. The boys help me assemble it and we plug it in. (yes folks I went ALL THE WAY and got a PRELIT fake tree)  YES !!!!  it works. I throw the trash in the box and tell the kids “OK, we’re ALL decorated for Christmas”  “yah right  they tell me. Well it was worth a try. This is all I am able to do today, but tomorrow we will dig out the decorations and trim the thing.





     Well Mom has t o work, but when I get home I have 2 boys waiting for me to trim a tree. Dad has dug out the ornaments and has them all in the living room ready to go. The boys have a grand time decorating the tree. Ian finds all the keepsake ornaments and puts most of them up. He is looking for an angel for a tree topper. Don’t think we have one of those, but he finds the star we use, he has Dad help him put it up, but alas the star is too heavy for the tree. He is disappointed but moves onto other decorating.

     Ian disappears for a few minutes, (I figured a bathroom trip) he returns with a hand made tree topper. He has take a toilet paper roll and 2 pieces of yellow construction paper. He cut out a star and has attached it to the toilet paper roll. He and Dad place it on the tree top, it’s PERFECT!

     Here we have a few photos of the boys trimming the tree,





















      Ok when is it going to be ENOUGH? Ian had an appt. with orthopedics today. Seems when he had the MRI done back on 10/22 they found "something" on his left femur (thigh) so we were given this appointment to check it out.


       I let both boys skip school today (Christmas vacation starts tomorrow anyway) so off to Boston we go. We get there early and since we have Dad w/ us this time, we show him The Lindt Chocolate shop.


     Ok we arrive at the office & check in. Boy this is a BUSY place. Height, Weight the usual. But man has he put on some weight. He was 66.5 on 11/26 now he is 74.1 a gain of 4.6lbs in 27 days. Dr Sundell won’t be too thrilled with that tomorrow.


     We meet Dr K. & he and I talk while Ian is in the bathroom. On 1st assumption he is thinking the spot on the MRI has been caused by the steroids. Since those can contribute to Perthes Disease. Wonderful, you guys are just FULL of .GOOD NEWS. I have already done some research into this and it’s not a good thing. I am getting a sinking feeling in the pit of my stomach again. 


    When I tell him this was found BEFORE he started the Steroids he says he will go check the MRI & be right back. (excuse me but shouldn’t  he have looked at that BEFORE he came into see us???) Upon his return, He says it in the middle of his thigh bone not at the head when he originally thought. (See diagram note I was NOT shown this by the orthopedic Dr. This was given to me by Dr B that I met on 12/24/03)

     Ian comes back from the bathroom and Dr K. starts to talk to him. He asks if he has any pain. Ian says no, but when tested, (he has him lie down and lift each leg one at a time and pushes on the calf area) he indicates there is SOME pain and it is RIGHT where the spot showed on the MRI.   Dr K. explains from the least it could be would be a cyst, the worst a TUMOR.


     Ok ENOUGH ALREADY!!!!!. When is this nightmare going to end. They tell us we are going to get better and things just keep getting worse. Now we need ANOTHER MRI w/ an IV. (That didn't go over well. Ian has another breakdown about the IV. I thought we had this taken care of, after the visits with Rachel, but guess not) A CT Scan and then a follow up w/ Dr K.  And get this..........CRUTCHES.


     Dr K is worried about it being a weak spot in the bone and it would have a possibility of breaking if put under stress. As you can see in the cross section view that only 1/3rd of the bone is still healthy-the grey part and 2/3rd  is affected- the bright white part.  Gee I guess running on a treadmill at PT is a bad idea.


     I ask Dr K to tell Keith what his thoughts are while I go to make appointments. I head out but Keith calls me back, Ian needs to come back to the exam room so they can fit him for the crutches. I lose it out in the hallway as they do this. I want to know when is this going to be enough. How does a 9 year old deal with all of this. My head knows there are other kids LOTS worse off that Ian but they are not MY child. My heart is breaking because I can’t fix it for him and I couldn’t keep him safe from this.


     I get to the check out desk and deal with Ms Personality, NOT! She tells me I need to go to the MRI department and make an appointment to get that done and then come back and schedule the appointment with Dr K. I tell her that in Rheumatology they make all the appointments FOR me. “Not MRI, they make there own. She snips at me. Unless you want to come back on 2 different days, 1 for the MRI and 1 for the Dr.”  “OK fine but WHERE is MRI ??”  “Down that hall to the left” and she is off to another area. Geez I am a wreck and compassion this woman didn’t have. I don’t know my way around the hospital totally

(I know way more than I want to NOW) and she was NO HELP at ALL.


     Keith and Ian make it out to the waiting area and we ALL head off to find MRI. It’s slow going with crutches. We get there and the 1st available appointment is 1/9/04. Ok we’ll take it. I am still fighting tears here and the woman at the MRI desk hands me a box of tissue.


     Ok now it’s BACK to orthopedics and Ms Personality. I tell Keith to go to the desk, for fear I will lose it on Ms Personality, but he gets someone else and they are very helpful. We get the CT scan scheduled for early morning on 1/13/04 and then back to see Dr K later the same day.


     Now my question here is Why did we have to wait a month to have an appointment with this Dr K if when we got here he had not even LOOKED at the MRI on file, and then took 2 minutes with Ian and then needs more tests. Why couldn’t he have just looked at the MRI a month ago and order the tests so that he could have had half a clue the day we were in to see him. To me this visit was a complete waste of time.


     Ok we finally get to go home, but we are all in the dumps from this visit, I hope the one tomorrow goes better.


     On the way home we stop at the local mall to see Santa. There was no line amazingly, and the boys walk right up to Santa and into his lap.


     And we had a great photo taken of the boys with Santa. (You’d never know he parked the new crutches off to the side of this photo)


     Ian got around the mall fine on the crutches. We did spoil the kids and yep bought them yet, ANOTHER toy.


     Figures Christmas is 2 days away, and they already have WAAAYYYY to much  But after all the gloom from this visit they both needed a pick me up. And I even bought more Xmas gifts, great even more stuff to wrap.


     We get home and the bushes by our front door are FULL of boxes. Gee mom has been shopping again. One is a Christmas present from Keith's Dad. A quesadilla maker. Yum. We decide that this should be supper so Keith heads back out to pick up 1 more Xmas gift, and the stuff to make quesadillas. They were GREAT. Thanks DAD.


     After dinner Keith & I have a wrapping party. The last few months have been so nutz, that the buying was easy. The wrapping, not a chance.


     Around 9:00 we finish and head upstairs. Ian has had off and on bouts of tears, since the visit. Don't really blame him. This whole situation just plain SUCKS!

And I tell him it is ok to feel this way, if he feels the need to cry. Please do, it won’t do him any good if he keeps it all bottled up inside.    




     Ok out of the house early, 8:00 and head into Boston AGAIN.


     The traffic was NOTHING! We arrived at the parking garage @ 9:15 w/ another 1:45 to go we head to the Galleria for coffee. (I finally got some info on this place. clic here for the layout & shop listing)


     Well since we forgot the crutches, we grab a wheel chair and have Ian ride around. This is when we discover just how un-handicap friendly the Galleria actually is. We manage fine, but we had to stay on the lower level, since no one ever came to help us with the elevator.


     We hang out in the Children’s Lobby for a while, at the Big Screen TV area. We head up to the 6th floor around 10:35. While in the waiting area we apply the EMLA cream so that we will be all set for Phlebotomy.


     We get the Height, Weight, B/P etc.  He is still 4’7” but now he weighs 73.2 lbs an overall gain of 10.7 lbs since this all started. We head to the exam room and a Nurse B does all the preliminary stuff. She asks about Ian’s current meds and I have HIM tell her, since that was his homework from Dr S2. he passes with flying colors. Ok she is done and says the Dr will be in shortly.


     Next we get Dr B. he is one of the fellows on staff in the Rheumatology Department. (This means he is a full fledged Pediatrician, but now is getting his specialization in Rheumatology and Immunology.) He very friendly, and funny. Ian unwraps the plate full of cookies that we have brought in to share. (his dad goes on a baking frenzy every Xmas. We have at least 6 dozen of at least 12 different kinds of cookies at our house) Dr B thinks this is great and enjoys the peanut butter cookies.


     We go over the SAME things that we just told Nurse Be. (silly question..don’t they ever talk to each other???) Again Ian recites his meds list and when he says oral prednisone, Dr B is puzzled, it is usually done by shots, when we start to talk about shots Ian again dissolves, and I say “this is probably why they went with oral” He asks how things are going and I tell him GREAT up until yesterday. And then relate the story of the visit to orthopedics. This is when he offers to SHOW me the MRI and what every one is so concern about. Mind you this “thing” was an incidental finding, something they found by accident while checking him out for the Dermatomyositis. And he even gave me prints of the MRI’s



This is the 2nd  view of the MRI the white dot in his left leg is the problem. Dr B  thinks that as Ian’s mom I have a right to SEE this thing. At least he seems to know what’s going on even tho this is the first time he has seen Ian. I wish Dr K from yesterday had been as interested.


     He does the usual strength tests and we talk just a bit  I show him the Spiderman photos and he is really impressed with Ian’s progress. Ok next comes Dr Susan and Dr S2 in to see Ian. This turns into a GOOD visit. This one is filled with laughing, good jobs etc. Way better than yesterday.


     Dr B shares the Spiderman photos with Dr S2 and I get the other copies out that I made. There is one for everyone. Dr S2 wants to know if he can use them in a talk he has to give. Please do. I tell him. I also give them the business cards I have made to direct people to this web page. They think that this is great too.


     Down to business, Dr S2 wants to start lowering Ian’s dosage of Prednisone…yahoo. But with Ian’s phobia about needles still enforce he says he will opt to go with the 2nd best treatment, since the 1st best involves a SHOT of Methotrexate once a week administered by Mom or Dad. And just the mention of the needles has Ian in tears again. He again wants us to work on that with a therapist. I will have to find someone local, the trips to Boston are getting to me.


      New med on the list is Cyclosporine  this is to be taken for about a week before we start to lower the Prednisone dosage. He has also thought of skipping the blood work but decided we needed a baseline for the new med. I tell him about the visit to Orthopedics and the crutches and he says that we won’t be able to control Ian’s weight if he is not moving around. “Ian has been getting around with this thing this long and been fine, I think he will be fine a few more weeks, just be a bit more careful with it.”  This does wonders for Ian’s mood, to think he won’t have to sit still at the Xmas eve party at cousin’s house tonight.


      He tells Ian he won’t force him to have the shots YET! But there may come a time to we may HAVE go that route and Ian should prepare for it. We want to make you well as quickly as possible and 2nd best may not be good enough.








25 mg

Twice Daily

75 mg

Twice Daily

1mg M-F

@ dinner

12.5 mg Twice Daily

Saturday ONLY







50 mg/day/AM

75 mg/day/AM

1 mg M-F/AM

12.5 mg Twice Daily

Saturday ONLY

.5 CC



We head for home in a MUCH better mood than yesterday. We stop to get the new med, but they have none in stock, they wil have it for me Friday. This is fine and we head off for a dinner out. We all have a meal of steak and potatos. Mom and Dad just can’t deal with another round of McDonalds.


Then it is home for the old folks to nap and then go to Auntie’s for Christmas Eve. This was a good time, lots of talking, playing and fun for everyone. Dylan starts to fade around 9:30 and we head for home.


The boys settle in about 10:00 so that Santa  can come, Gramma is staying over so that she will be here Christmas morning and she is bunking with the kids.. I think Mom and Dad get to bed about midnight exhausted.



THURSDAY DECEMBER 25TH 2003                                              MERRY CHRISTMAS


The boys are up around 6:00 with Gramma and head out to the living room, I see them go by from bed. Gee this is a 1st we have had to wake the boys every Christmas so far.

 Keith and I get up and the fun begins, the tearing open of gifts and on to the next one. Ahhh some normalcy, I am getting to be like Ian in the fact that if I don’t think about all that is going on, it doesn’t seem as bad.



THURSDAY DECEMBER 31ST 2003                                   


Just another typical day at our house, (since we ditched the crutches and just have Ian be careful) Dad has to work until 10:30, so the boys and I order Chinese food (who doesn’t on New Year’s Eve) I have it delivered around 4:00 pm to beat the crowds and the boys are hungry.


They have a friend over and are off to play with the new Game Cube in the family room. I just busy myself with looking for a new car. These trips to Boston with a Manual Shift are taking a toll on the ole knees. Got more GOOD news. Since husband is so close to graduation, the job offers have begun to come in. Tho most of them mean relocating, we are all fine with that, the only concern being Ian’s Medical Care.


Dad arrives home to find me asleep on the couch, the boys are still up and they have more Chinese food with Dad and wake me at 11:50 to watch the ball drop on Dick Clark’s Rockin’ New Year’s Eve. We all manage to stay awake til 12:30 and it’s off to bed.


I sure hope 2004 turns out better than the end of 2003……………………………………………..



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