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| Peter and Gokul-Uncle |
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| Peter and Sheela-Aunty |
Peter's trip to Jordan, Dubai and Sharjah
Peter and I returned from Dubai on Sunday April 3rd. We both caught colds from Sheela-Aunty and Gokul-Uncle, but despite his low white blood cell count, Peter weathered it much better than I did. What a nasty piece of work!
Flying on Royal Jordanian was an interesting experience. At our gate in Chicago, we watched some of our fellow passengers facing Mecca and praying while waiting for the flight to depart. When it came time to board, a dozen TSA officers formed a gauntlet through which we all had to pass. Every passenger was carefully scrutinized, to say the least. My feelings were mixed. On the one hand, I have struggled with Islam since well before 9/11, and when the attacks happened, I knew that life would forever be divided into pre- and post-horror. On the other hand, most of the travelers (beards, skullcaps, hijabs and burkas not withstanding) spoke with American accents. I can only imagine how awful it must feel to be an Arab-American right now.
Despite all the uprisings in the middle east, things were fine during our transit through Amman, Jordan. We had a great lunch at a restaurant in the airport topped off by exquisite gelato. (The middle east seems to be full of exquisite gelato!) The food on the flight was particularly odious, so it was a very good thing that I had packed oodles of snacks for Peter. I needed him to keep eating every couple of hours so that his long-acting insulin wouldn't bring his blood sugar too low. It was a constant battle.
It was a crabby trip for Peter. Unlike our trip to India, he was touchy and inflexible most of the time, and entirely fixated on food. Indian people have a wonderful way of living in the moment and their relationship to time is much more fluid than ours. It's one of the things I love most about visiting India, or Indian friends wherever they may be. It's therapeutic for someone like me to not live by the clock all the time. But Peter -- oh my goodness, the moment he finished breakfast, he'd start hounding me about lunch. Fortunately he enjoyed idlis from Gokul-Uncle's restaurant for breakfast, and was even more delighted with the homemade french toast that his aunty and uncle made him. Most of the time we were out and about for lunch, and since one of Dubai's greatest attractions is its malls, he got to have his fill of American fast food. Oy, the food courts! In the evenings we ate at Gokul-Uncle's Indian vegetarian restaurant most of the time, but Peter turned up his nose at most of its offerings. On the last day, he declared that the pakoras (vegetable fritters), Hakki noodles, fresh watermelon juice, cheese sandwiches and ice cream were delicious, but along the way he was most unpleasant. I tried to rein him in, beginning with the first meltdown at Amman airport, but his aunty and uncle indulged him completely once he turned on the waterworks.
But never mind all that. Dubai is a splendid place to visit this time of year, with the brightest sunlight, blue sky, turquoise sea, and light-colored buildings -- the total antithesis of Chicago. We visited the only 7-star hotel in the world (Burj al Arab), went to the top of the tallest building in the world (Burj Khalifa), spent time at an amazing "kid's village" (Kidzania at the Mall of Dubai), visited a falconry center on the outskirts of Dubai, observed the antics at a huge ice rink AND SKI AREA (!!!) inside the Mall of Dubai, took some nice strolls and admired the yachts along Dubai Creek, shopped here and there, drove over to Sharjah (another emirate) to see the exquisite new University there, spent a wonderful few hours at Sharjah's Arabian Wildlife Center, took in the most exciting sound-and-light show I've ever seen at another mall, watched India beat Pakistan in the World Cup cricket semi-final, swam in the Arabian sea, ate delicious ice cream and gelato whenever we felt like it, and then joined with Indians all over the world to watch the Indian cricket team WIN THE 2011 WORLD CUP!!!!!! It was an amazing match against Sri Lanka, more riveting for me than Peter, but we both loved seeing all the people dancing in the streets, honking their horns, beating drums and screaming afterwards. It was a real party that night at Gokul-Uncle's restaurant.
Peter missed a week of school after the trip because of his cold, but he's been quite perky since. I wonder if his red count is up ...? We'll know in a couple of weeks. On the trip to Dubai, I found that I needed to give him less and less insulin every day. That has continued here at home. We're down from 14 to 10 units of long-acting insulin every morning, and instead of giving him another 25 or so during the day, we're down to less than 10. It'll be interesting to hear what his endocrinologist has to say about that.
We postponed and then changed our Make-a-Wish trip based on the sense that Peter will be here longer than expected, and input from the MAW people about our initial plan. We will definitely go out to CA to visit our Indian relatives there before the year is out, but Peter decided he'd like to see Harry Potter World at Universal Studios in Florida. The folks at MAW offered their "standard" (amazing) weeklong family package, including all transportation, accomodation, meals, free passes to Disney (3 days), Universal Studios (2 days) and Seaworld (1 day). We'll be staying in a special village just for MAW kids and their families. We won't have to wait in any lines. What an amazing experience this will be. We're trying to set things up for the week beginning on Labor Day, since the parks will be less crowded then and the weather will be a bit cooler than during the peak of the summer. Leo, Annie, Peter and I will be going. Dr. Goodell, Peter's hematologist, thinks it's good that we're not going to postpone the trip too much. Nothing is ever predictable.
Last weekend after doing some more research on the web to assuage my thirst for information about bone marrow failure syndromes, I realized that we were missing an opportunity if we didn't enroll Peter in some studies. Peter himself doesn't have anything to gain in terms of his treatment or prognosis, but these are orphan diseases, and there are only a few hundred new cases a year. Researchers are finding that there are a lot more genes involved than they once thought, and there are several different ways in which the DNA strands can be damaged. Ultimately, the cure for these diseases will be gene therapy, wherein healthy genes will be introduced into a kid's marrow via some kind of host such as a harmless virus. Right now we're probably 20 years away, but the work is still progressing quite rapidly. But the scientists need as many data points as they can.
So, I decided that it would be a good idea to offer Peter's DNA to those who can make productive use of it. I wrote up a brief summary of his case, and then Googled "bone marrow failure syndromes genetic research". It didn't take long to find the top 12 researchers around the world along with their email addresses. I knew that these people probably don't hear directly from parents very often, but I thought that one or two might get back to me with some interest. However, within 72 hours, ALL TWELVE had written back to say they would love to get a sample of Peter's DNA. This is relatively simple, because we can draw an extra vial of blood for one of them each time we do a blood draw to test his levels. But clearly we can't work with 12 different researchers ... so I've selected a study (DNA bank) at NIH in Bethesda, Maryland, another at Rockefeller University in NY, and a third at Queen Mary's College in London, where the head researcher is Indian, and particularly interested in getting more Indian DNA.
I've been busy gathering Peter's records all week so that I can send copies to each of the study nurses who handle the paperwork. I've been working on paperwork to authorize their use of the DNA and reading up on the specific research they are doing. In each case, they will be examining Peter's genetic material to see if his defects match those that have been identified to date. One interesting learning is that it is still quite possible that he does have Fanconi Anemia. FA turns out to be a much more complex disorder than previously thought, and it is not unusual to get a false negative on the first line test. Another possibility is Dyskeratosis Congenita, the next most common disorder after FA. (Of course, these are both extremely rare). If he does not match any of the known defects, then his DNA will be banked for future use.
There is a skin biopsy for FA and a telomere study for DC that I believe our insurance will cover. Dr. Goodell had mentioned them before, but it was my thinking that there was no point in doing more testing because it wouldn't change anything -- for Peter. Now I think differently. There is a point. The day the first child is cured of bone marrow failure with gene therapy, Peter and all the other kids whose cells supported critical breakthroughs will be right there. Peter's life will have made a difference not just to our family and friends but to other kids and families we'll never know.
(Regarding telomeres, I believe they are the "caps" at the ends of the strands of DNA, but I'm a bit out of my league ... and I'm not 100% sure whether DC is the only syndrome with a telomere defect. I'm sure Dr. Goodell will give me a layman's summary the next time we see him).
Apparently NIH will bring us to Bethesda at some point to do a full workup on Peter. I think they'll be looking at every organ system, but there won't be anything more invasive than a blood draw. In fact, I've always wanted to see an MRI of Peter's brain, because his cognitive deficits are so unusual. We'll turn the whole thing into a fun holiday where Peter's whims can be indulged in exchange for visiting with the docs. My brother Russell owns a geodesic dome house not far from Bethesda, and he says he can give us a key if we'd like to stay there. More likely we'll be in a hotel attached to the NIH facility, but it's nice to know it's there.
I am very optimistic about finishing my online paralegal course (which I plan to start around May 1) and starting my new career before Peter falls ill. More importantly, SPICE is coming up in June, and it will be a sweet, sweet, sweet time for all of us. I probably won't be posting too frequently for the next few months, but in the back of my mind, I know I'll be needing your prayers by and by. Thanks for following Peter's journey with me.
