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Caterina Marcus Bonetti 
Welcome to Caterina's web page! We have created this page to update our loved ones about her progress. On June 9, 2004, Caterina was diagnosed with Hurler's Syndrome,a rare genetic disease, which falls under a larger group of inherited diseases called "Muco-Polysaccaridosis" or MPS syndromes. For more detail, please see links below. Although there is no cure for Hurler's syndrome, treatments currently available include bone marrow/stem cell transplantation and enzyme replacement therapy. On August 6, 2004 Caterina underwent an umbilical cord blood stem cell transplant at Duke University Medical Center. Thank you for visiting her site. For updates on our journey, please visit the journal.
Journal
Monday, May 11, 2009 10:45 pm EST
We are coming up on the big 6th birthday celebration for Cati! This sixth birthday is more like a 100th birthday celebration! May 30th she will be partying like a rock star with 40 of her closest friends (and trust me, we had to trim the list down!). Shortly after that, on June 12th, the Make-A-Wish organization has granted her her own wish – a trip to Disney World with the family. We will all be celebrating her again for 6 days in the magical world of Disney.
I made it to the Spring update before May turns to June and June brings us Summer. I know it’s been a long time coming, but these days I hardly find the time to sleep. Just last night, I fell asleep at 8:20 pm while reading the kids their bedtime book. That’s due to the 5 am wake up calls from our 21 month old – “the rooster” as Alain calls her. But now I’m digressing….
So where did I leave off last? January came with a bang! Just when we had entered 3-4 weeks hiatus from hospital visits, we walked into our first January labwork to find Cati’s kidney functions flying off the roof. Her creatinine was above 1.0 and her BUN was rapidly rising from 75 to 95. I got the scare of a lifetime (if you can believe there are still some left). Just when I thought all the organs were finally working together nicely and we were past the “dark” ages of worrying about any kind of blood counts, I had to listen to the words “dialysis” and pretend it was just another day of routine for us. Thankfully, after a few days of extreme iv hydration and visits to the new member of our team, the nephrologist (I thought these doctors were reserved for the above 80 crowd), it was diagnosed that Cati’s kidneys have been somewhat impaired over time. This is mostly due to a combination of medications, poor hydration, and God knows what else. Nonetheless, Dr. Pearlstein was not alarmed, and seemed rather unfazed by the latest developments, prescribing 1-2 LITERS of water per day to alleviate the kidneys and get us back into “normal” territory.
That’s where gratitude comes in very handy. Imagine trying to give a 5 (soon to be 6) year old 2 liters of water per day. I’ve run a Marathon and I don’t think I drank that much. So bottom line is THANK GOD for the g-tube. It has come back to being our saving soldier and I insist on keeping that in until she’s in college! I flush her with water a few times per day, somewhere between 40-50 oz per day (about 1500 ml).
The kidney issue also explains her high blood pressures last Fall. So now her blood pressures have come back to normal (she is still on low doses of enalapril, once a day).
To continue with the medical front, this Winter development involved blood draws 2 times per week to monitor electrolytes. These have been finally weaned back down to 1 time per week in the past month; so once a week we draw blood and every two weeks we see the Team at clinic. You may think this is actually a drag, but there is this small part of me that actually enjoys being there. It continues to serve as a reminder of where we are and how far we have come.
Just when you think your day is going terribly, with a 20 month old waking you up at 5 am, your 7 year old fighting with you about what she wants to wear and how she does not like her hair, and Cati and Camila fighting at each other's throats over whether breakfast is French Toast or Pancakes, all before 7:45 am, when you try to hail a taxi in the coldest Winter we’ve had in a while in NYC, then run both of them back to school and then back to School again at 11:45 to pick Cati up to drag her fighting to clinic… as my breath begins to fail me I take the elevator up to the 9th floor and take a big sigh in and look around. We’ve made it. I see the bald heads walking around with their iv poles… infants all the way to 30 year olds. I see the fear in their mothers faces and the angst in their fathers eyes, and my heart softens and the breath returns, and gratitude flows all the way back in. We’ve been there and have survived. So clinic, in my view, is a good thing.
Spring has come and almost gone, and although the Weather has been something to complain about, all has been well on the homefront. Cati has grown in leaps and bounds. Her weight is now 16 kilos! She is 92 cms, still about the size of a 3 year old, but growing. Her vocabulary is exponential, and for the first time in 3 years we’ve survived a Winter without having to go inpatient. More gratitude!
She is fighting viruses well on her own.
She has actually been doing so well that she was given the OK to travel to the Dominican Republic in April to be a flower girl in my cousin Julia’s wedding (the picture on the slide show all dressed in white!). It was like a dream come true. I finally had my 3 kids in the homeland! It was a magical 4 days, and the girls had a blast. We all were containing tears all weekend. Cati thought she was going there for her own “debut” as opposed to Julia’s wedding. She had the time of her life. Everyone has commented that since our return her self confidence has exploded (as if she needed more of it!). But it really is a sense of “I can do the things my sisters can do too”. She does not say it, but I know she feels it.
We have become “world travelers”. Spring Break took us to Florida, then DR… and more to come. It’s as if we’ve encountered a freedom we never knew. The ability to actually put your three kids on a plane and go somewhere. Never without the fear, but with much more confidence that all will be well. And all has been…
School is a breeze now… she is there every day, fully integrated into the classroom, and going without her SEIT (special education itinerant teacher). We had a big meeting mid Semester to discuss her progress and all the teachers felt she would be better off trying to do it on her own than having a “special” person assist her when she needed help. Very Montessori! So the first week when she figured out she couldn’t reach the toilet paper in the bathroom, she devised a way to pull it out of the handle, unroll a portion of it, and stack it in a place that she could access it so that she could clean herself up when she went to the bathroom on her own. And like that, there are dozens of other stories. She is fully bilingual in English and Spanish, but the mix of the two is better than anything your kids have seen on “Handy Manny”.
She is “graduating” on June 4th. Another momentous occasion shortly after the birthday party! I think I’ll need a box of tissues to make it through that one. And that’s only nursery school. I don’t know what I’ll do when we get to the “big ones”. She’s off to a Kindergarten in Brooklyn at a wonderful Friends school for children with learning needs. There will be 10 kids and 2 teachers in each room. All the kids are highly intelligent, they just need extra support. For those that know Manhattan, Fall is bound to be fun for this mom! One child in the Upper West Side, one child in Brooklyn, and a toddler at home. Not complaining though… just preparing for my own sitcom.
May 2nd we had a team of 17 partake in the 9th Annual Rainbow of Heroes Walk at Duke. It was a celebration of life, and for us, a celebration of Cati’s FIFTH year post-transplant, coming up on August 6 of this year. We had an amazing team of people, and I am so grateful to all that came and to those that supported our “Team Caterina”, which won 2nd price for Fundraising! Thank you all!
There are so many days that I wish that I had one of those voice recorders for executive assistants in my pocket. One of them was last week when I overheard the following conversation:
Cati: “Camila, your school goes until 12th grade, right?”
Camila: “Yes, Cati”
Cati: “My school that I’m going in September goes to 6th grade”
Camila: “I know, Cati”
Cati: “After 12th grade, you will go to college”
Camila: “I know Cati”
Cati: “Will you live in college?”
Camila: “Yes”
Cati: “Will you ever come back?”
I did not know whether to laugh or to cry. These kids are growing up way too fast for my taste. And I can’t talk about “the Rooster” because she is the fastest developing of the 3! One day I had a baby, now I have a curious babbler who makes the energizer bunny look like his own batteries are dead. Now I know why people baby proof their house. This concept had eluded me with my first two! She is a delight and a recipe for sheer exhaustion. Anyone with problems falling asleep, give me a ring, I’ll send her over for 2 days… bedtime will never look so good.
So all is well. I sit and write this update and am astounded at myself for taking so long to update and regroup. But no news is always good news. We will travel to Duke this Summer for our usual check-ups. I promise another update sometime after our Make-A-Wish experience.
In the meantime, thank you for coming along on what we’ve come to know is a perpetual roller coaster ride. Always grateful that we’ve made it this far.
Hug your kids… and don’t doubt for a minute that every day is a gift, and the future is always a mystery, so make sure to enjoy the present!
Much love and peace to all.
Clau
Read Journal History
Hospital Information: Duke Pediatric Bone Marrow and Stem Cell Transplant
HOME SWEET HOME
New York, NY
(212) 426-8426
Links: http://www.mpssociety.org General web page describing the diseases such as Hurler's which fall under the MPS category.
http://www.missmollyb.com A beautiful story of a little girl transplanted at Duke a few years ago. This will help understand the process we are about to go through.
http://www.stemcelltransplants.org This is a good informative link on stem cell transplants.
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