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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
Wednesday, September 17, 2008 9:30 pm EST
After an amazing summer we are off to a great start of the school year! Apologies for the delays in updating but know that we subscribe to the "no news is good news" theory. We took a family trip to North Carolina on July 25th, after spending a very nice month of June and early July in New York City. Camila attended her first day camp in Rockland County, NY (about 40 minutes away) and Cati enjoyed 2 weeks at her pre-school camp.
I suppose that after watching too many National Lampoon Vacation movies growing up, I decided I needed to take it upon myself to drive the 3 girls down to North Carolina (as opposed to flying)… and so we did it! We left bright and early (5 am) on July 25th and made it down to Figure 8 Island by 4 pm that same day. The girls did great in the car and by the end of the trip they could regurgitate the names of the 7 states (plus DC!) that we drove through. It was very exciting for all of us. No doubt something my grandfather Papa Jimmy would have been proud of.
The 2 weeks on the beach were absolutely glorious. We were privileged to be joined by Titi, Tio Chris and their gang for part of the time, as well as Tita (with fresh new hips all the way from Texas where her surgeon gave her the go-ahead to come walk in the sand). The second week we had our good friends from NYC join us with their two kids and everyone had an absolute blast. It’s the kind of place that no matter where you grew up brings you right back to your childhood. (Or maybe it’s just something for us Caribbean folk?!)
To listen to the sound of the ocean every night and walk on the sand for a large portion of the day is priceless. I was reading a book while I was down there where a group of women share a Summer experience and the belief that there is nothing that some sand between your toes cannot cure. I subscribe to that club. It must be the memories of my great grandmother (as told by my mom) who said that there was a nothing a dip in the Ocean could not cure. Call it sand or the saltwater… or a combination of both. It certainly worked on dear Cati.
She strengthened her leg muscles, regained her appetite, got a slight tint of color on her skin from the sun (despite much sun protection and gear!) We got back to NYC with a fresh new Cati on our hands.
While we were down there, we took advantage and drove to Duke (about 2.5 hours) on two occasions to complete a total of 4 days of our FOUR YEAR transplant check-up. Dare I say it? On August 6, we celebrated Cati’s 4th birthday of her new lease on life. It is something to bow down to in gratitude.
The 4 year tests all went very well. We had nerve conduction studies done for the 1st time and thankfully there are no signs of abnormality there. Her echocardiogram was great. Her MRIs (of brain and hips) were both stable. Let me digress here a little for a Cati anecdote…
The day of her MRI she needed to be in the machine for one full hour. For those of you who may have been subjected to this, you know it involves going into a closed machine, with very loud noise, and you have to remain completely still. On top of it, for the brain MRI, you have to have some sort of Darth Vader mask (white, not black) attached to your head in order to immobilize it. Leave it to Cati to decide she did not want the sedative. She overheard me talking to the doctor about the options (sedation, no sedation) and in her usual manner said “WHAT MOM?” to which I gave her the 3 minute explanation about going to sleep or not going to sleep. She said “I don’t want to go to sleep”. Needless to say the doctors and I agreed to prepare all the medication because this was going to be an impossible feat – one hour with banging sounds, frozen like a soldier, inside a claustrophobic machine – most of us would take a valium or a few glasses of wine any day right? We figured there was no way.
I guess I should never underestimate dear Cati. She proceeded to go through the entire test, holding tightly to her determination and willpower and NO sedative at all. Halfway through it we took a break, she shed a tear or two, I gave her the option to go to sleep with some medicine, and again, she said no, took a deep breath, and lay down for the final 30 minutes. When all was finally done and I unstrapped her she sat up, said “YEAAY” and then “Where are we going for dinner?” That’s my girl!
Her orthopedic checkups followed. Dr. Fitch noted that her hips have not changed since last year so we’ll continue to watch that. Her knees have gravitated inward more (she is more “knock-kneed”), which he wants to observe closely but felt that there was nothing to do right now. Over the next year or two he may want to insert some plates that may help straighten out the knees as she grows.
So overall we got a clean bill of health at Duke. Her immune studies are ok… still not great. She is still not making b-cells but thankfully we can give her immunoglobulin through her monthly IVIG. Her hemoglobin has been holding steady (requiring less and less epogen). Platelets in a very normal range.
We returned home and were able to wean the TPN!!! This has been a huge feat. No more diarrheas… Cati is FULLY potty trained. Those who know me know that I like to discuss bowel movements in full depth. This time, I tell you, fully formed stools once a day! A year ago, who would have thought?
In August, I also had the opportunity to travel for 3 days to visit my 85-year-old grandmother. I wanted to take Arianna to meet her, even though I am not sure she knew we were there. Nonetheless, in spirit and energetically I thought it was great to be there and am convinced she felt our presence. Cati stayed behind with Alain.
Labor Day weekend Alain and I got to celebrate his 40th birthday by going to France for 5 days. My mom took care of the girls, alongside my dear aunt Tere (who was a teacher and knows how to handle 3 girls under 7!). It was a very welcome break for us parents and a nice bonding experience for the girls and their grandma and great-Aunt.
September has rolled off to a great start. Cati started school full-time last week. She goes 5 days a week from 8:30 to 11:45. In October she will be going one or two days a week until 2:45. In addition she has physical therapy, speech therapy, occupational therapy and vision therapy services at home every afternoon. So this kid is busy between 8:30 and 4:00 every single day (except Fridays!). The amazing thing is you would think she collapses and at 8 pm she is still going strong like the energizer bunny. She does nap every day still which really helps to regenerate her for the afternoon therapies and she loves her little nap. (I could use one myself!)
Nutritionally, she has remained steady with her weight despite being off the TPN (iv nutrition) for almost 4 weeks now. She eats by mouth and we are hard at work with a feeding therapist (once a week for the next 4 weeks) at introducing new foods and strengthening her mouth muscles so that she eats better and better. I still supplement her via her g-tube at least once or twice a day. I like to call it her nutritional “enhancement”. I give her green juices (kale, spinach, celery, beets) and oatmeal, barley, fresh berries, and other sources of healthy food which she (nor any normal 5 year old) would eat by mouth. For anyone who does not believe in the power of nutrition, please come to our house and I will show you before and after pictures of Cati. Her hair is the best example. It is absolutely incredible and a real testament to the age-old saying “you are what you eat”.
I told the doctors as far as I’m concerned I’ll keep the g-tube there until she’s 15.
On the medication front she is almost off all steroids (now every other day) and down to very minute dosage of blood pressure medicine. The rest are minor and being weaned too.
To add to our “FUN”, I am also in the process of handling Cati’s educational needs for the next school year, when she turns 6 and will be leaving her current pre-school. We are in the process of trying to continue all her current special services (which in NYC involves a lawsuit with the Board of Ed) and also looking at what would be the best option for her educationally as she moves forward. Being in NYC, we have a WIDE range of options; this is a most wonderful thing but also requires a significant amount of research, evaluations, and work. More on that as the year progresses…
In the meantime we will enjoy how much this child is thriving at school, trying to keep up with others, having a ball on the playground, writing her name, trying to sound out words, and pretending to “read”, all while finally gaining the confidence and strength to go up and down the long flight of stairs to start her day there! We are blessed to have a team of extraordinary people to help this happen… and I don’t know where we would be without them. I must agree with Hilary Clinton in that it does take a village. But let’s not get into politics because I’ll have you here for another hour of reading…!
I write this and I cannot believe how far we have come in a year. While this is most evident in the health and well-being that we see in Caterina, it is not escaped when I look behind me to feel a tug on my leg from Arianna, who is trying to climb on anything that is in front of her, and approaching her 1st birthday in 3 days; it is also screamingly clear when I look at Camila who started 1st grade 2 weeks ago; at times I pinch myself and do a double-take in the mirror while asking myself “wasn’t I just there the other day?”
Time flies when you’re having fun!
As we rejoice in our own amazing story this year, we don’t forget the challenges that are constantly being faced by those who walk this road. In July, we lost another precious Hurler child, Susannah White, who battled this disease with dignity and grace for 9 years. We were honored to have followed her journey when we first found out about Cati’s diagnosis and will always be grateful to her for her incredible spirit and to her family for sharing her precious life with all of us. Please keep them in your prayers as they embark on their new life without her.
Finally, I have to share one last story… last weekend we ordered Chinese food which, like typical NYC folk, we like to do on the occasional Sunday. We sat around the table and opened up our fortune cookies. Cati was very excited and opened hers. I still have the message clipped to our bulletin board in the kitchen. It reads as follows:
“You emerge victoriously from the maze you’ve been traveling in.”
I’ve pondered this thought for a while. The human instinct is to believe that we’ve reached some sort of “final victory” in this road. But I know in my heart that the victory lies not in the ultimate end, but in our attitude and in our spirit as we face the inevitable challenges that life places in front of us every single day.
The key is to emerge victorious each day. That's our goal.. one day at a time.
Thank you for keeping up with us... love and peace,
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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