Monday, March 14, 2011

Forgot one thing... (And some new news!)

Though the week had been wonderful, our only sour note came on Thursday or Friday night.  Emily told me that she saw two littler boys at school pointing and laughing at her.  She ran up and yelled at them.  :)  I'm so proud of her for that.  She told me that she yelled something to the effect of "It's not funny!  Do you think I want to be like this, on all of these medications and in pain all of the time?"  She thinks they were kindergarteners.  Poor kids didn't know who they were messing with ;)  I feel so sad that she has to go through this, but I'm so proud that she's finally standing up for herself.  I cannot wait until she has burned off the Prednisone weight, at least to a point where she can be comfortable & have a sense of balance again.  

Also, Kevin's doctors FINALLY called back today.  To sum this up, he had tried calling them to find out the results from the cancer scan after the radiation.  They returned his call on Friday- only to tell him to schedule his follow-up appointment for May.  He yelled at the lady, asking her if he had any other cancer in his body, but she didn't have any idea about his testing or his conditions.  She claimed that she would have the doctor call right back.  Yeah, sure.  So, finally today (Monday) her Physician Assistant called to tell Kevin that he is cancer free!  Praise the Lord!  Thank you all for your thoughts and prayers.  Lord knows that we have needed them.  I'm hoping that maybe we will have a fantastic rest of the year.  I'll take boring, too!!!

JA Picnic, Make A Wish

After I got home from work, I laid down to watch TV, and woke up 5 hours later!!!  (Oops!)  The great part about it?  It's 4 A.M., almost everyone is asleep, and I now have time to update without everyone talking to me at once  :)

Emily & Parker
These 4 got along so well!  My son has a huge crush on Dakota, and Emily & Parker clicked quickly.
This has been a wonderful week!  Starting with last Saturday, (which I realize is now more than a week ago).  Last week, we made the trip over to Orlando to join up with the Arthritis Foundation's Juvenile Arthritis Family Picnic  :)  Unfortunately, Kevin was still radioactive and in isolation so he couldn't go, but I packed up all three kids.  Gir thought that she would be bored.  I knew better  :)  I knew that there would be some older siblings there.  It is so awesome to be able to get the kids together with other kids that are suffering in ways similar to them.  The beautiful thing about this is that when they get tired, no one bugs them to keep going.  These kids understand each other in ways that most other kids can't.  If they can't run, no one is going to name call, or harass them to get their way.  The kids had a wonderful time connecting.  It was really cool to look around and see the ways that certain people clicked with others.  My son followed around little Dakota, the older woman for him  :)  Little Carolina & Cole clicked as well.   They are both so little that it was absolutely adorable watching them!  I tried to get pics but totally missed the opportunity.   Emily made a special friend, also.  I had wanted Emily to meet Parker for quite some time.  I just knew that they would click.  They seem to have similar problems at the moment, too.  Em is really shy; she wouldn't just go talk to him.  Somehow, they finally got talking!  They chatted away for quite some time.  They really understood each other- so important right now.     While the kids were busy playing and getting to know each other, the adults had the opportunity to chat and compare notes.  I had met most of our mom's before, but it honestly felt like I knew them all so well.  (Thank you, Facebook!)  It is so important to share your triumphs and frustrations with people that understand!!!  Heidi brought books, including one that she had made based off of her blog!  (Pretty cool, huh?)  She also brought a few classics that got passed around.  Some were for kids and others were for us adults.  When this is what you live and breathe but don't get to talk about much to people in your normal daily life, this is very important.  There is so much sympathy from family to family, children and parents alike.  Those that are going through a LOT still think about other that are going through less.  We have an amazing extended family now that I am so blessed to have met.  Some great things really do come out of bad situations! 

Proving how quickly things can happen for these immune suppressed children, Heidi's daughter got sick on the way home.  She ended up going to the ER the next day and staying at the hospital for four days.  You would never have had any idea that she was ill watching her play.  We all know that often you can't tell with our kids.  These little people are so used to feeling badly that until it gets very, very bad they can't often tell that they are sick.  Of course, I think we all panicked over this.  Worrying for her, hoping she would be all right sooner rather than later, but also hoping that our own children wouldn't get sick.  For some it would be just plain disasterous.  

I had such a wonderful time on Saturday that I actually felt relaxed for the whole week.  Maybe having a three day weekend helped, too.  I have been in a fantastic mood all week.  By Wednesday night I was feeling a little edgy, waiting for the Make A Wish volunteers to come.  On the one hand, I am so thrilled for Emily because just by telling her about, her attitude is better.  Not that she's been unpleasant.  Not by any means!  It's just that she seemed to have no will to do anything before.  It was so sad to always see her sitting at scouts alone while everyone was playing.  They weren't excluding her; she was just too unhappy to want to play.  Just thinking about her wishes has made her happier.  Having them come over just made it real to her; she knew that I was truly following through with what I said.

When our Make A Wish volunteers came, they came bearing gifts for all of our kids.  That is so important.  I'm so happy that they try to make the siblings feel special, too.  I try so hard to love them all equally, but of course there are more demands from Emily.  I have to spend more time with her.  No, we can't just go places like other families can.  It depends on how well she feels for the day, if we need the wheelchair, how easy it will be to use the chair, etc.  Most of the time we are home.  It takes a toll on the other kids.  I can't tell you how many times we've had to cancel plans or change them at the last moment because of health concerns.  Anyway, one volunteer sat with me and we filled out paperwork and talked about the future.  The other one sat with Emily and together they decided on her wishes.  (They do it this way so that they make sure that the child understands that it's almost anything they want, and not what other people want them to do.)  For her wishes Emily did ask for her Disney trip, or a hot tub, or to be a princess.  They have them pick 3 in case they can't do one or two, or if the doctor vetoes the plan.  It really didn't take long, and I think that Emily feels really good about this.  It is so exciting to think about!  Our rheumy said that they almost never turn down a Disney request.

I truly hope that the Disney one gets granted.  That is what she wants most of all, and of course that is what all 3 kids will enjoy most.  I had thought that it would be only Disney, but apparently it's a week in Orlando with tickets to any parks that you'd like to go to.  I have heard that they make it absolute magic.  No waiting in lines for most things, a MAW volunteer guides you through the parks, and often everyone goes out of their way for the MAW families.  There's also a Cinderella meet in the castle.  She would love that!

I am also using this as incentive to get her moving.  I told her that while I don't mind taking her chair, I don't want her to have to use it every second we're there.  I am hoping to use this to build her endurance back up a bit, and her muscle tissue, too.  It's amazing what we'll do when there's something to look forward to!  I'm hoping that this will also help her to burn off some of the steroid weight.  This week we decrease her dosage to 9MGs daily!  I can't wait until we're on 6MGs- that's where they say the weight will really start to drop off.  One wonderful thing about the steroids is that she finally eats!!!  This is the kid that wouldn't eat much of anything, who wouldn't try new things, who ate like a bird.  Now this is the girl that carries one lunch menu around in her backpack, has one next to her bed, frequently reads them in an anticipatory fashion, and talks non-stop about food!  Before we tried everything to get her to gain weight, but now we may have to worry about her gaining too much!  It's better than being 42lbs at age 9, right?  She's earned a new nickname:  Sharky!  :)  She's so funny!  We are soooo blessed!  She's had a few joint issues, but nothing major.  Her Remicade is increasing at her next appointment.  Hopefully that will do the trick.  My only worry is that she should be seen the first Tuesday of April but it will now be the 2nd Tuesday because all of the docs will be out of the office that whole week.  She usually starts to hurt the day before, so I hope this doesn't result in a flare.

I have got to get to bed!  Have a wonderful Monday!  :)

OT Misc rambles

I meant to post last week.  Due to Kevin's video card dumping on him, there are now 3 other people sharing my computer.  Considering that we have more often than not had 3 computers running at a time, this is a huge inconvenience for us all.  Needless to say, my time on my computer has been limited!  Thankfully, his new card should be here by Thursday.  I wish his pc had waited a week or two to toast.  I wish that I could say that his medicine would work immediately and he would have instant relief, but that is far from the case.  He's still feeling just bad.  He is tired 24/7, and he still feels swollen and cold.  A perfect time to just sit at the computer and mindlessly click things to help take your mind off of it.  Hopefully soon...  At least he isn't a danger to the household anymore  :)  One thing that is interesting while watching all of the horror that Japan is going through:  he's been watching how they are scanning the thyroids of people suspected of radiation poisoning.  We have learned more about that this week.

I want to extend my deepest condolences to the people of Japan.  This is been hard on us.  My friend Chris (Hirohide) and his children live in Aomori.  Gir & I spent a panicked first day looking for info on their prefecture.   Once their power came back on, Fiona emailed Gir and let her know that their family is just fine!  They had a crack form in a wall and the power was off for almost the whole first day, but otherwise they are ok.  Shaken, but well.  I am so happy that Gir & Nona keep in touch.  They were best friends until Nona moved there, and now they stay pen pals.  I'm so glad.  I know that they got very lucky in their area, but obviously many were not so lucky.  It is so sad watching the destruction on the news.  It's unreal, like a movie.  Please keep these people in your prayers.

Friday, March 4, 2011

Our latest crazy update

Where does the time go?   I feel as though I haven’t had an extra second for days now.  Holy frustrating week!!!   I thank God that I have a 3 day weekend coming up.  I really need some down time, & some fun thrown in! 

Monday started the week with Kevin going in early for his one big radiation pill.  We knew that he would need his own bathroom, and that he was supposed to eat using disposable stuff.  No contact.  Yeah, that was the start of all of the other things that they should have told us but didn’t.  He got home from the hospital as I was trying to get the kids off to school, telling me that everything we were told was just the tip of the iceberg.  He couldn’t be within 6 feet of anyone.  Like, they asked him if there was another bed within six feet, even with a wall separating.  If so, that person in that other bed could be in danger.  Doesn’t that give ya’ the warm fuzzies???  Better yet, anything that he wears or sleeps on has to be stored away after his seven days of confinement  for a full week before it can even be washed.  Wow.  His plates, forks & cups have to be thrown away in their own bag and stored away for a week before we can put it out for the garbage truck.  And he has to carry a card with him (once he’s allowed near people again) saying that he’ll be radioactive until May 21, 2011.  He will set off Geiger counters.  (He has a half life!)  Yay, huh?  Yeah, we had no idea what we were getting into.  This gave us both this grim, scary feeling about it.  It’s been very surreal as he put it.  It’s freaky.  I know it’s necessary.  I know that this is a precaution; I’m trying not to get too absorbed or freaked out by it, but it’s scary.  One funny that came out of it... one of our wonderful, beautiful children expressed their disappointment last night that Daddy wasn't actually literally glowing.  The kids had expected him to glow like a Christmas tree.  LOL!!!  He slept through the first 3 days for the most part, but I think he's recovering now. 

That Monday night, Make-A-Wish was supposed to be here.  Our volunteer has Lupus.  She’s on Methotrexate & steroids, just like Emily is.  She panicked when I called her to ask her if they’d like to reschedule.  We rescheduled for this upcoming Wednesday.  She didn’t think she could be around the radiation.  That made me worry, so I called our rheumy to make sure that I didn’t have to move Emily into a hotel for the week.  I also realized that Tuesday was our Gainesville day, & I had been expecting Kevin to be able to take Zach to school.  I realized that I would have to leave before I could even drop him at school, and there’s no way that I would be back in time to pick him up.  I asked my parents to get him, but dropping him off here wouldn’t be a good option with no one to take care of him, so I kept Zach with us when we went to Shands.  It was a longer drive than usual.  Construction and the endless “are we almost there, Mom?”’s kept me busy.  That boy had me so busy while we were at the hospital that I didn’t have a spare minute.  Usually the time drags by. I totally expected to catch up on Facebook, but I didn't have any time at all to.

Her appointment was AWESOME!!!  They seemed amazed by how well she's doing.  For the first time her muscle enzymes are down!  When she was admitted in October, her ALD was a 15.1.  The normal range is 3.3 to 9.7.    This week Em’s was a 9 -- within the normal range!    I was supposed to get a copy of her labs, but we all forgot.  We have more of a decrease plan for her steroids!  I am so thrilled that by the end of the month she will only be on 9mgs daily, and after her next appointment it should be down to 6mgs!  Her attitude has been better with the decreased steroids, as well as the prospect of Make-A-Wish. That has helped her to feel better.  They said that she will be on steroids for a total of 2 years, but from next month out it should be very low, maintenance  doses.  They said that at about 6mgs you see the water weight start to drop off.  That will help a LOT!!!  Her elbow has been hurting her, and she’s had that sternum pain lately so we’re increasing her Remicade next time, but I’m comfortable with that.  We discussed sun rules, since sunburn can actually cause a disease flare (which would NOT be good!), we discussed shampoos.  For whatever reason, the steroids make her scalp dry, which is normal, but her hair is very oily.  They say that’s weird- usually the hair dries out and starts to break off.  I thought that was interesting.  To make things even better, they were able to get her IV with one poke, and get a ton of blood from her on the first try!  I’ve been telling her that it’s the steroids that were making it hard;  I think she finally believes me! 

Last time she went, she felt well enough the next day to go to school & therapy.  This time… no such luck.  I had panicked a little bit, trying to figure out how to make all of these things work again.  Thankfully, my work is very understanding.  I was able to stay home with Em yesterday.  Heck, I won’t lie- I needed it, too.  I wouldn’t have called out for myself, but Emily not feeling well offered me a chance to breathe & vegetate.  Also, Kevin hadn’t eaten all day Tuesday while we were at the hospital because he’s afraid to touch anything.  I can’t take care of him the way I’d like, but I can kind of help him out that way.  Jeez, had we known how complicated this was going to be he’d have just stayed at the hospital.  Or I’d have taken the week off.  We truly had no idea.  So that has been this week’s roller coaster.  I hope you’ve enjoyed the ride.  Now please get off before you start to lose it, too!!!  J   We’re trending up.  I can feel it.  We can laugh about it now  :)