I’ve been a Mom for 11 years now. 2 summers ago I spent a lot of it with Rachel at Children’s Hospital Boston and / or at a variety of doctors. Last summer me and the kids took a month long road trip visiting a pile of amazing places and doing other road trips. This summer we have spent a lot of it at home having days at the pool but not really doing a lot but having simply fun.
Simple fun apparently sucks! This has been the most difficult summer of my mothering career and it is a summer I plan to avenge. I know some of the difficulty surrounds Batten Disease and behavioral issues that trickle down to my other 3 children but that can only take so much blame.
School goes back in 3 weeks. All 4 of my children will be in school full-time! Rachel is going into 5th grade, Julie is going into 2nd (with the best teacher ever), London will be starting Kindergarten and Boston will be at Montessori Preschool. I have promised them their own individual “back to school” shopping trips for some new clothes / shoes and supplies. They are so excited for their turn to go shopping with “just Mommy” as opposed to dragging everyone along.
So the Back-To-School Countdown begins!Read More
The Juvenile Batten Disease’s one and only trial that they have been talking about for years has finally been opened! I found it yesterday at clinicaltrials.gov and have emailed the folks running the trial to ask them to consider Rachel. It will require that she takes a liquid medicine everyday as well as ranitidine (antacid). The trial is double blind which means she will definitely get the medicine but she will also get the placebo. We’ll have to visit New York 4 times and work with Dr Sims (Rachel’s Neurologist at Mass General) for clinical evaluations. This won’t be a cure but if this medicine does anything, and is safe then maybe we’ll be able to get her this medicine after the trial. Here’s hoping!
Trial Medication: CellCept (Mycophenolate Mofetil)
What does this medication do? It’s an immunosuppressant
Side Effects: See also Warnings section.Constipation, nausea, headache, diarrhea, vomiting, stomach upset, loss of appetite, gas, tremor, or trouble sleeping may occur. If any of these effects persist or worsen, notify your doctor or pharmacist promptly.Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.Because this medication weakens your immune system, you are more likely to develop infections which may be serious. Tell your doctor immediately if you develop any of the following signs of infection: persistent sore throat/fever, night sweats, flu-like symptoms, painful urination, vision changes, a sore or wound on the skin that feels warm/tender/painful and appears reddened.This drug increases the risk of a rare and possibly fatal brain infection (PML – progressive multifocal leukoencephalopathy). Tell your doctor right away if you have any of these symptoms: clumsiness, sudden change in your thinking (such as confusion, difficulty concentrating), difficulty moving muscles, seizure, difficulty speaking.Tell your doctor immediately if any of these unlikely but serious side effects occur: unusual tiredness, fast/irregular heartbeat, muscle weakness, easy bleeding/bruising, swelling of the feet or ankles, mental/mood changes, weakness on one side of the body, unusual change in the amount of urine.Seek immediate medical attention if any of these rare but very serious side effects occur: chest pain, stomach/abdominal pain, black/tarry stools, vomit that looks like coffee grounds, shortness of breath/rapid breathing.A very serious allergic reaction to this drug is unlikely, but seek immediate medical attention if it occurs. Symptoms of a serious allergic reaction may include: rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing.This is not a complete list of possible side effects. If you notice other effects not listed above, contact your doctor or pharmacist.In the US -Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.In Canada – Call your doctor for medical advice about side effects. You may report side effects to Health Canada at 1-866-234-2345.
Warnings: Mycophenolate decreases the body’s ability to protect against illness and infection, and may also increase your risk of developing lymph node tumors (lymphoma) and other types of tumors. Therefore, this medication must only be given under close medical supervision. Discuss the risks of taking mycophenolate with your doctor. Notify your doctor immediately if you develop signs of infection (such as persistent sore throat or fever) or other symptoms such as weight loss, night sweats, enlarged lymph nodes, or skin growths.Read More
Rachel has a Grand Mal today on Nantasket Beach under the care of my 16 and 15 year old neices who also had Julie, London, Boston and their little sister. The girls handled Rachel very well, Sarah took care of Rachel while Haley ran to the beach bag and grabbed the Diastat and “did what had to be done” with it. So, so impressed with them.
The seizure lasted about 2 minutes. (Just writing this down for documentation’s sake).Read More
Rachel went to see iCarly (Miranda Cosgrove) in concert with her friend Anthony. Rachel had a great time and came home with a real concert t-shirt! Thank you to the Berlin family for being so generous and buying tickets so she could go! Pretty cool to cross off a bucket list item that you didn’t know you wanted to do until you were given the chance. Life is pretty amazing like that…Read More
Today we went blueberry picking with our wonderful cousin (my neice) Sarah. We all had a good time and then went to Mickey D’s and onto Bridgewater State so Sarah (going into her senior year) could look around.
Today was also another day that showed Rachel is becoming more aggressive. I need to do some “studies” and see if her aggression is because of being out of the house for too long or having her siblings around or…. I don’t know.
What I do know is that watching your child slowly lose her mind has to be just about the most painful experience in the world. People who think that everything happens for a reason are completely mistaken (I’m being “nice” in my terminology) or haven’t thoroughly thought that statement out and/or haven’t had to watch their child suffer extensively. There is no good reason to put a beautiful, intelligent and thoughtful little girl through this. If you take offense at this declaration then feel free to turn around and never visit this blog again. The next person who tells me that “everything happens for a reason” can expect an ass kicking.Read More
This is Rachel with her summer school teacher shooting hoops!!! Turn your head sideways to watch.Read More
Noah ran from Cali to Fla this year for kids like my daughter, Rachel. Kids that are living with Batten Disease. Check-out his new (and very awesome!) video:Read More
After the recent heat wave affecting New England we (me and the kids) have decided to postpone our summer road trip until September. Its a good excuse to blow off a little school but more importantly the weather will be more temperate and I won’t have to deal with 110 degrees while strolling through Hays, KS or Terre Haute, IN. We stayed there last year in our travels and both were little slices of hell on earth. Neither my kiddos nor their Mom do very well in such high heat.
We’ll be driving out to Colorado and hopefully staying at the Garden of the Gods Campground (they don’t close until September 30th) for about a week and hanging out with incredible friends (they can only be found in one place apparently lol). We were considering staying a while but the Colorado Springs School for the Blind isn’t sure if they’ll be able to provide programming for Rachel.
We’ve generally traveled route 70 and took route 80 home once but we are open to suggestions. Any good road stop ideas? I really want to go to Niagra Falls this time around…. but I hate the drive through upstate New York.
Planning to go to the Flying W for dinner, Santas Workshop for some fun, Geocaching, then float down the Arkansas River and we (me) are looking to do some stock friendly trails with the Jeep while we are out there. Every summer seems to be a little more difficult than the last so we have no choice but to take life by the horns……………..Read More