The doctor did their prior authorization leg work and insurance rejected it. Rachel’s rash is worse today from her old medication. I called the pharmacy and asked them to fill the prescription ($289) and I’ll just pay it out of pocket. With only prozac in her system today she did really well. I’m not looking forward to the rest of the week but I’ll just take each day as it comes (like we have any choice in the matter)… If she gets through the lamictal without a rash and we can get her on the regular pills the price might lower as the pharmacist explained, there are no guarantees. There are never any guarantees in life I am told. Why the hell not? Now if only I could get my hands on some Cellcept. Cellcept is an organ anti-rejection medication that U of Rochester has been organizing a Juvenile Batten Disease Drug Trial for…. for years but the trial price has gone up and postponed. If I remember correctly from our trip to the U of Rochester a year ago, the main requirements of that are 1. You have to have Juvenile Batten Disease 2. You have to be able to walk ten feet When I heard the second requirement I was all “we’ve got that in the BAG” when can we get started. Now I wonder if her central nervous system will be too deteriorated by the time this trial starts. She has years for walking still (knock on wood) but I’d like a crystal ball. Picture of today: I believe it was taken in 2003 and I called it “Sunshine” back then. Pictures like this literally kill me because I can’t stop wishing I had done more, spent more time, showed her more things back then. Literally kills me.
No school today and I’m going to have to keep Rachel out tomorrow. LOTS of work to do for work which is awesome and I look forward to the quiet late nights. Working on getting my “ole faithful” mini christmas tree working again (fuse?) because I find the lights so relaxing late at night. The girls and I carved our pumpkins tonight (yes, we know it was late but we ran out of time on Halloween). Better late than never is my motto on Halloween because we run out of time every single year. The girls were so thrilled to stab and gut the beautiful squash which are now glowing the night away on my doorstep.
The rash from the Risperdal is getting worse and the Lamictal “starter pack” was denied (I got the letter today). I can’t keep her on the Risperdal with the rash like that so I’ll be stepping her down starting tomorrow, as quickly as possible. I put a call into Rachel’s doctor within a minute of getting the denial letter so I am hoping she will call something else in (or a different version of Lamictal) tomorrow. The Lamictal starter pack costs about $250 out of pocket…. Rachel is going to be (and going to feel) HORRIBLE this week so will likely miss school. Send me a shout if you don’t hear from me for a while. The picture: This picture is of Rachel on her 5th Birthday with my Mom (Granny) and her baby sister Julie.
Rachel’s rash from (presumably) Risperdal has been developing over the last few months and covers a good portion of her body. Its not an angry rash, I would say it looks more like goosebumps that are red in a few places. This medication has been good to get the ADD symptoms of Batten Disease under control and help make for a happier day for her and everyone… BUT… she has put on nearly 50 pounds since starting it. At her age she was expected to gain some weight as puberty is around the corner but 50 pounds is crazy. I’ve been working on coming up with the next step for her medication (she, thankfully only takes Risperdal and Prozac) because this weight makes her uncomfortable. I brought a list of possibilities to the Doctor 10 days ago and we agreed to start her on Lamictal which is an anti-convulsant medication that is the only medication certified by the FDA to treat Bipolar disorder (other than Lithium). Apparently the “starter pack” of the medication is quite expensive and insurance is still taking its time… I find this endlessly frustrating and time consuming. Making multiple phone calls to get a medication that she NEEDS for an organic, degenerative brain disease seems terrible. I’m absolutely positive that I’m not the first person with a sick kid who had to climb through hurdles and I’m quite positive that I’ll look back at this entry in a few years and laugh with all that is to come.
I love the anticipation, the weather, the thrill my kids get when someone asks “So, what are you being for Halloween?” So much excitement and easy happiness that I simply cannot get enough of this time of year. John is making a cheesecake with Rachel right now (its 8am) and I have plans to make candy apples with them later on. My brother and nephews are coming up and we’re having a small, family Halloween thing on Sunday nigh and a friend is having a birthday party for their freshly minted 8yo daughter. 🙂 Life would simply be perfect if it weren’t for… Can’t let myself think like that today because there is nothing I can do. We, as a family, must force ourselves to ignore the disease and enjoy this weekend in spite of the challenges brought to Rachel through her diagnosis. Happy Halloween, everyone. Do me a favor and tell me what your kids are going to be for Halloween and/or what you’re going to do this weekend to make it amazing. (Note: If your “amazing” is going to involve baking a cake, I’ll be happy to hand over my address. LOL)
From a dear friend who, if possible, Rachel would steal this friend’s husband and marry him one day. 🙂 The complaint is that the website background is (well, was) too grown-up and “isn’t this a website to represent a child?”. This friend is right… so I’ve decided to keep the website theme in tune with upcoming Holidays and Seasons. So if you hate the new Halloween theme you’ll only have to stick with it for a week and then we’ll be onto Thanksgiving. The picture in this entry was taken of Rachel with her brothers about a year ago. To everyone offering to help with the 5k, thank you so much! I will definitely be calling on all of you to help and I really appreciate the offers!!!!!! Thinking of dropping the candle prices to $10 as a few people gasped at the price. I’d rather sell more and raise more research money than hold my head high and refuse to bend. What do you think? Is $10 a better price?
I’ve stayed up until nearly 2am to put this blog together and make it look good enough to put Rachel’s name on it. It’s kind of hard for me to stay on top of everything when the children are awake, especially when Rach is home. Not everyone who will read this knows about us so I’ll quickly explain that we are a family of 6 that lives in the Boston suburbs with 4 great kids. Rachel is 10 and has (suffers from (I hate that term)) Juvenile Batten Disease which is very rare and you can either read more about it here or go directly to www.bdsra.org and the Batten Disease Support & Research Association will be able to educate you better than I can. Our other children are Julie (6), London (5) and Boston (4) and they are truly the best kids (wish the food bill were a little cheaper but other than that… lol). In the last year I (Rachel’s Mom) have been working on getting Rachel’s educational and medical needs met and more recently have done some fund-raising work. We hosted a Lemonade stand on the fourth of July, had a table at Endless Summer and have started selling candles at Batten Candles. The next major fund-raiser we are working on is a 5k Race / Walk in our beautiful seaside Hull, Massachusetts town (May 2011). If you have any fund-raising ideas for Batten Disease Research, please contact us (and thank you)!
I’d say version 2.0 (since we took a trip in August) but I feel more comfortable adding a sub version to this trip since its still 2010 (and version 2.0 is planned for January 2011). I’m taking the kids back to Colorado next month for a week and can’t wait. We’re going to have an early Turkey Day with the best of friends and if we’re lucky we’ll get to see some snow. Also hoping to find somewhere that has snow tubing already going by then but won’t mention it to the kids until I get some good news. And we’re also hoping that the Flying W will have already started up their Christmas Show by then. Rachel loves their music.
Who would have, COULD have conjured up this situation. Not only is Rachel ill and declining, we have been told that she is eventually going to die and there is nothing that we can do. No treatment, no trials, no plans of attack or courses of action. As a parent it is an unimaginable detour in life and I don’t think you can really grasp the what this is like unless you are a Batten Parent or have a child with a similar diagnosis. Its not like she’ll be lucky enough to get hit by a bus at age 20 and get it over with, she gets the nice long road of losing ability after ability until there is nothing left but death. There are dozens of books out there about a wide range of diseases and illnesses and how to cope. There are local support groups (which I doubt make it all that much easier) for other major diseases. Don’t get me wrong. I’m THRILLED that there are so few of us out there but I just wanted to say that we are in an unimaginable situation, one that has little comfort and very few answers. A situation that so many people pray for but those prayers are never answered because our children are still dying. Possibly pessimistic to say this (its definitely realistic) that there is no hope for Rachel given the complexity and location of Juvenile Batten Disease. I block this feeling out and I am living life but sometimes it just KILLS me to say that there is literally nothing that I can do to save my child. I’ll raise money towards research for the rest of my days but nothing being able to save my child, my daughter…. well, it just kills me. Feel free to read and not reply to this. The traffic on this blog is very high but not reflective in my (much appreciated) comments. I guess if I were in your shoes I wouldn’t know what to say either.
We didn’t get too many good pictures from the “Our Promise to Nicholas” Fundraiser last weekend because it was at night and I was chasing kids but I did get three pictures. It was freezing!!!!!!