Before I give you a play by play of today's adventures (like it or not), I will come right out and say that today J.R. received his first stem cell treatment! Hooray!
Tim and I are convinced our hotel (room) is situated directly on the equator. Tim is so sunburn that he can barely wear clothing, and I wore long sleeves today to protect my arms (and my ego- I didn't want the ICM doctors to say "I told you so!") Believe it or not, the clinic rep told us that Costa Rica is experiencing a phenomena that is causing the sun's rays to beam down perpendicularly (we believe over the Hotel Intercontinental). Our beet-red appearance (along with Tim's incessant butchering of the Spanish language) screams turistas even louder than ever.
Thank the Lord we were easily able to fill up the day with fun activities to keep J.R. busy. We could have easily done a day trip to the beach or rain forest, but with our luck we'd hit a snag and miss our 2:30 p.m. appointment altogether. Instead we hit the mall, played in the hotel fountain, and exposed ourselves to toxic chemicals.
This afternoon we returned to our room to freshen up for J.R.'s appointment. A smell that I can only describe as a combination of glue (the kind you are DEFINITELY not supposed to sniff), formaldehyde, turpentine, and gasoline poured from the elevator. I was lightheaded by the time we hit the 5th floor. As we stepped out of the elevator and into our room, I thought "who is burning carcinogen flavored incense?" We were absolutely overwhelmed by the smell (and fear we'd pass out and die after ICM had cashed our check but before having administered any treatment!). Loooong long story short, I packed our bags in 7 minutes flat and we were off to another room. I won't tell you that I reminded the concierge we were in this country to make our son well, not worse. Pura vida!
Okay so the TREATMENT...(you know, the whole reason why we are here!) went fairly well. Dr. Lara cut off J.R.'s bandages that kept his catheter clean and dry, which we knew would prove anticlimactic because we KNEW J.R. would love this part only to learn he'd be rewrapped after the injection. Tim had to hold J.R. down (as we fully expected) and our little buddy was pretty unhappy about about the whole thing. Then again, he wont even tolerate a doctor looking in his ears. All in all we are THRILLED we chose to utilize the catheter. Five minutes later J.R. was back to his same ol self, laughing and wanting his Leapster game (and the 100 other things we promised him over the 5 minutes it took to receive the cells). One injection down, three to go.
Tomorrow we're taking a trip to the zoo after a 10:30 a.m. treatment. Can't wait. Gotta go pack my sunscreen :).
P.S. To see some pictures of our trip so far, click on the Flickr links on the left hand side of this page.
Peace!
Tuesday, March 31, 2009
Monday, March 30, 2009
My Good Luck Charm
Today was our first full day here in Costa Rica, and I swear the sun came up at 6 a.m. J.R. woke up ready for the day. Did I mention how great he has been acting? Naturally we have his Leapster with us which he rarely puts down, but even still, the bean has been a dream. How lucky are we?
I don't like talking about luck, because it's inevitable that once one does (at least in my case) that's when it starts running out. So mum's the word. Before we took off on Sunday, my friend Brenda brought me a lucky silver token inscribed with the words "wish it; dream it; do it". Well at least I THINK that's what it said, as I have nearly rubbed the writing off from grasping the token so tightly. I won't say if the charm has worked as to not jinx myself.
Our ICM (Institute for Cellular Medicine / clinic where J.R. will get his IV's) appointment was at 8:30 this morning. Our driver picked us up (miracle) at 7 anticipating the Manhattanesque traffic one encounters here in San Jose. Naturally we made it in 20 minutes flat. Normally the protocol would be this: patient goes directly to CIMA Hospital on day one where he is sedated for the catheter and bloodwork. In J.R.'s case, the doctors had us go to ICM FIRST where he could be checked out. J.R. is getting over a sinus infection, and so we wouldn't have to cancel our trip for the THIRD time, the doctors said "just come and we will play the treatment schedule by ear." They are so wonderful. Dr. Tomas, who is a female which is ultra-confusing considering she has a male apellido (surname), looked J.R. over and said his one ear was red but it would not cause any problems. Hooray! We're actually doing this.
After lucking out with J.R.'s health, we participated in what we thought at the time was a useless presentation about what to pack for our trip (hello, we're here!) and the need for sunscreen while visiting. We rolled our eyes only to fry ourselves to a crisp at the kick-ass hotel pool an hour later. We are such losers. The couple we met at the hotel traveled to ICM with us, and we met a new couple at the presentation. I know this is a horrible thought, but the more affected children we run into, the luckier we feel to have J.R. Believe me, living with the bean is no picnic, but this one 3 year old little girl at the clinic...all I can say is pobrecita. If she was awake, she was screaming bloody murder. The irony of the situation is that her (very young) father is a doctor. I had to distract myself by turning to Tim and telling him I thought the dad looked like Steve-O from MTV's Jackass (oh yeah, now Dancing with the Stars). Ironically he asked 4,000 questions at the presentation and Dr. Lara (a guy) took the time to answer each and every one of them. In Spanish.
I remembered why I DON'T speak Spanish at home- it's because the little I do speak, I do so sin accento. Entonces (for that reason) people think I am fluent, and think that's carte blanche to go all old school on me and start speaking 1,000 mph losing me at "hola." Well estupida Kristi asks Dr. Lara to answer Steve-O's questions in English. But I ask in Spanish! Therefore midstream everyone forgoes the need to speak English, and by the time all is said and done this is all I could gather:
Human cells have surface "markers" that tell the body which type of cell it is- be it skin cell, neuron, you get the picture. Stem cells are undifferentiated. Therefore once they are introduced into a patient's system, the body does not know to reject them...or at least the rejection rate happens with a statistically insignificant percentage of cells. In fact just recently the clinic STOPPED the procedure of incubating the patient's blood with several different stem cell samples to determine which sample produced the least amount of rejection. After over 200 procedures, the clinic found that the amount of rejected stem cells consistently fell between 5 and 7%. So it's possible that 95% of the 9 million cells (I think that's the amount that's injected) are "accepted" (if that's the medical term for the opposite of rejected).
Are you still awake? My point is...I had to translate most of this! Hooray for growing up in Bonaventure with Angel Gomez, Advanced Placement Spanish, Universidad (go FIU!), and memorizing Gypsy Kings lyrics for shits and giggles (NO easy task I tell you!). I rock!
J.R's last hurrah with water had to take place before our 12:30 p.m. hospital appointment for the catheter placement. So after being shuttled back to our DOPE hotel, we let the sunbathing/burning begin. At least we had the sense to douse J.R. with sunscreen. As we speak I am typing with one hand and applying aloe to Tim's torso with the other. Again, losers with a capital L.
CIMA Hospital is a stone's throw from our hotel. Cool. After being assured that all we had to do once we got there was whisper ICM and they would trip over themselves to help us, the staff looked at us like (and I quote Tim) "we asked them if we could board the space shuttle". Once again someone dropped the ball, but I've said it once and I'll say it again...that pura vida attitude is catchy. Even though I yelled out something reminiscent from Sally Field's performance in Not Without My Daughter, I knew everything would be fine. They eventually did figure out who we were. The BEST part came when Tim calls me over to translate- he figures out that halfway through giving our information to an admissions clerk that the dude didn't speak English. No big deal; I'm fluent (in my own mind) and I can handle this. As a nurse enters to room to take J.R. to prep for the procedure, the clerk leans over and says to his coworker in Spanish, "oh, it's the kid who's the patient, not the dad?" Thank the Lord I had the sense to tell Tim this story AFTER we leave the hospital. He would have been madder than Mothra.
J.R. was a real trouper and so was his dad. I laughed myself to tears when Tim put on the size XL scrubs and they were SO tight he looked like a (burnt) stuffed sausage. The REAL, sad tears came not when they took J.R. away, but as I had to hear the 3 year old girl we met at the clinic scream herself to sleep next door. My heart just broke for her. The COMPLETE irony? She still has no diagnosis. Pobre Dr. Steve-O. And I am one lucky, lucky mommy.
We were told that J.R. would be "angry" as he came out of the anesthesia. All I could think was GRRRRRRRRRRREAT, J.R. has 45 minute crying spells after waking up from naps, so I could only imagine how this would go. As luck would have it, he did great! And the little man who can not tolerate a band-aid (no I am not kidding) has maybe asked 3 times in 6 hours if he can take the bandage off.
The real test comes tomorrow. Our appointment at ICM for J.R.'s very first stem cell injection isn't until 2:30 p.m, so we have a looooong day's work ahead of us keeping his mind off of the pool. We didn't want to do any excursions this day (rainforest, beach, zoo, etc.) because God forbid we get stuck somewhere and can't make it back for the appointment. Soooooo the saga continues tomorrow. At this very moment J.R. fell asleep with his Leapster in hand, and Tim is watching some Chris Rock movie that I think was only released in Costa Rica. As for this lucky girl, I'm off to bed after a second dousing of aloe-vera. Peace out!
I don't like talking about luck, because it's inevitable that once one does (at least in my case) that's when it starts running out. So mum's the word. Before we took off on Sunday, my friend Brenda brought me a lucky silver token inscribed with the words "wish it; dream it; do it". Well at least I THINK that's what it said, as I have nearly rubbed the writing off from grasping the token so tightly. I won't say if the charm has worked as to not jinx myself.
Our ICM (Institute for Cellular Medicine / clinic where J.R. will get his IV's) appointment was at 8:30 this morning. Our driver picked us up (miracle) at 7 anticipating the Manhattanesque traffic one encounters here in San Jose. Naturally we made it in 20 minutes flat. Normally the protocol would be this: patient goes directly to CIMA Hospital on day one where he is sedated for the catheter and bloodwork. In J.R.'s case, the doctors had us go to ICM FIRST where he could be checked out. J.R. is getting over a sinus infection, and so we wouldn't have to cancel our trip for the THIRD time, the doctors said "just come and we will play the treatment schedule by ear." They are so wonderful. Dr. Tomas, who is a female which is ultra-confusing considering she has a male apellido (surname), looked J.R. over and said his one ear was red but it would not cause any problems. Hooray! We're actually doing this.
After lucking out with J.R.'s health, we participated in what we thought at the time was a useless presentation about what to pack for our trip (hello, we're here!) and the need for sunscreen while visiting. We rolled our eyes only to fry ourselves to a crisp at the kick-ass hotel pool an hour later. We are such losers. The couple we met at the hotel traveled to ICM with us, and we met a new couple at the presentation. I know this is a horrible thought, but the more affected children we run into, the luckier we feel to have J.R. Believe me, living with the bean is no picnic, but this one 3 year old little girl at the clinic...all I can say is pobrecita. If she was awake, she was screaming bloody murder. The irony of the situation is that her (very young) father is a doctor. I had to distract myself by turning to Tim and telling him I thought the dad looked like Steve-O from MTV's Jackass (oh yeah, now Dancing with the Stars). Ironically he asked 4,000 questions at the presentation and Dr. Lara (a guy) took the time to answer each and every one of them. In Spanish.
I remembered why I DON'T speak Spanish at home- it's because the little I do speak, I do so sin accento. Entonces (for that reason) people think I am fluent, and think that's carte blanche to go all old school on me and start speaking 1,000 mph losing me at "hola." Well estupida Kristi asks Dr. Lara to answer Steve-O's questions in English. But I ask in Spanish! Therefore midstream everyone forgoes the need to speak English, and by the time all is said and done this is all I could gather:
Human cells have surface "markers" that tell the body which type of cell it is- be it skin cell, neuron, you get the picture. Stem cells are undifferentiated. Therefore once they are introduced into a patient's system, the body does not know to reject them...or at least the rejection rate happens with a statistically insignificant percentage of cells. In fact just recently the clinic STOPPED the procedure of incubating the patient's blood with several different stem cell samples to determine which sample produced the least amount of rejection. After over 200 procedures, the clinic found that the amount of rejected stem cells consistently fell between 5 and 7%. So it's possible that 95% of the 9 million cells (I think that's the amount that's injected) are "accepted" (if that's the medical term for the opposite of rejected).
Are you still awake? My point is...I had to translate most of this! Hooray for growing up in Bonaventure with Angel Gomez, Advanced Placement Spanish, Universidad (go FIU!), and memorizing Gypsy Kings lyrics for shits and giggles (NO easy task I tell you!). I rock!
J.R's last hurrah with water had to take place before our 12:30 p.m. hospital appointment for the catheter placement. So after being shuttled back to our DOPE hotel, we let the sunbathing/burning begin. At least we had the sense to douse J.R. with sunscreen. As we speak I am typing with one hand and applying aloe to Tim's torso with the other. Again, losers with a capital L.
CIMA Hospital is a stone's throw from our hotel. Cool. After being assured that all we had to do once we got there was whisper ICM and they would trip over themselves to help us, the staff looked at us like (and I quote Tim) "we asked them if we could board the space shuttle". Once again someone dropped the ball, but I've said it once and I'll say it again...that pura vida attitude is catchy. Even though I yelled out something reminiscent from Sally Field's performance in Not Without My Daughter, I knew everything would be fine. They eventually did figure out who we were. The BEST part came when Tim calls me over to translate- he figures out that halfway through giving our information to an admissions clerk that the dude didn't speak English. No big deal; I'm fluent (in my own mind) and I can handle this. As a nurse enters to room to take J.R. to prep for the procedure, the clerk leans over and says to his coworker in Spanish, "oh, it's the kid who's the patient, not the dad?" Thank the Lord I had the sense to tell Tim this story AFTER we leave the hospital. He would have been madder than Mothra.
J.R. was a real trouper and so was his dad. I laughed myself to tears when Tim put on the size XL scrubs and they were SO tight he looked like a (burnt) stuffed sausage. The REAL, sad tears came not when they took J.R. away, but as I had to hear the 3 year old girl we met at the clinic scream herself to sleep next door. My heart just broke for her. The COMPLETE irony? She still has no diagnosis. Pobre Dr. Steve-O. And I am one lucky, lucky mommy.
We were told that J.R. would be "angry" as he came out of the anesthesia. All I could think was GRRRRRRRRRRREAT, J.R. has 45 minute crying spells after waking up from naps, so I could only imagine how this would go. As luck would have it, he did great! And the little man who can not tolerate a band-aid (no I am not kidding) has maybe asked 3 times in 6 hours if he can take the bandage off.
The real test comes tomorrow. Our appointment at ICM for J.R.'s very first stem cell injection isn't until 2:30 p.m, so we have a looooong day's work ahead of us keeping his mind off of the pool. We didn't want to do any excursions this day (rainforest, beach, zoo, etc.) because God forbid we get stuck somewhere and can't make it back for the appointment. Soooooo the saga continues tomorrow. At this very moment J.R. fell asleep with his Leapster in hand, and Tim is watching some Chris Rock movie that I think was only released in Costa Rica. As for this lucky girl, I'm off to bed after a second dousing of aloe-vera. Peace out!
Madagascar 3- Escape to Costa Rica
Wow where do I start? Flight was great...and guess what movie was playing? You guessed it, Madagascar 2, the movie we've watched at least 50 times in the past month. How funny! Ultimately, it saved us because J.R. was absolutely glued. Does anyone know the part in the movie when the animals are on the plane and the movie playing in first class ("...this is first class...it's nothing personal...we're just better than you") is a montage of all the failed flight attempts of the early 20th century? Well American Airlines / Dreamworks cut out all of those crash scenes and inserted Shrek! Too bad our actual landing was MUCH like the one Madagascar 2. Of course Tim yells out "touch down like you're kissing your sister" as I grab J.R. for dear life. And no lie, the second we come to a screeching halt J.R. says "mommy, how in the HELL-o are they gonna fix that plane?" Ha ha!
Just when we thought the craziness was over we get to the airport, go through immigration, wait a bit for our luggage at the carousel, and there is an announcement that the Vice President of the United States had just landed and all airport operations were to halt. After taking a second to remember who the VP of EEUU was, I start to realize what the Costa Rican people mean by the term "Pura Vida." If we were at MIA, I'm sure people would be up in arms, cursing up a storm. Here? Not even a shrug of the shoulders. Everyone just popped a squat and chatted. We had to laugh, epecially since all the 3 of us had to left to eat was a king sized bag of Raisinets (which we fought over). After a 30 minute wait- no worries, pura vida!, we clear customs and walk outside to meet our driver. No driver. No fancy Mercedes. 20 minutes go by, and still no driver. In the interim, these 2 creeps are all over us asking us where we need to go. Long long story short, it turns out the creeps were officials of the turismo bureau and THEY ended up driving us to the hotel. Oh P.S., our driver WAS there but LEFT US!!! Guess he said screw the Joe Biden mess. As we pulled out of the airport I swear the ENTIRE COUNTRY was leaned up against the airport border fences hoping to get a glance of big JB. I tell Tim: if he is staying at our hotel, we're royally screwed. Well guess what...?!
Our hotel is bbeeeeaauuutiffffullll. Beyond beautiful. The tower/concierge/club/whatever you call it level is only 6 months old. Pristene is a good word for it. Do I have to come home?! Luckily we arrive right as the concierge spread is open for business. Beautiful foods, but then again our last meal consisted of Raisinets so anything at this point would appeal to us. We decide after eating (it's 6:30 pm, 8:30 pm FL time), that J.R. would have to swim. We had the entire place to ourselves and J.R. TORE THE PLACE UP! Fun. Before passing out in bed, we turn on the TV to find the movie Cars is playing en espanol. Can a girl go a week without encountering a Pixar film?! We just had to laugh, again. Pura vida baby!
After the debacle at the airport we weren't sure ANYone would get us from the hotel and take us to the clinic. But Rafa appeared. Very nice guy. We met another couple from New York who has 12 year old son with J.R.'s very same diagnosis. Lots to chat about with them. Come to find out they are staying in the next room. We later learn that we're probably the only two families at the Intercontinental because of the Vice Presidential summit going on! Tim KNEW there was a reason why we were asked to keep our curtians shut during our stay. How do you say SNIPER in Spanish? P.S. The VP of Honduras is way shorter in person.
Okay this blog entry is wayyy long. Take a bathroom break and I'll post more in a few...
-K :)
Just when we thought the craziness was over we get to the airport, go through immigration, wait a bit for our luggage at the carousel, and there is an announcement that the Vice President of the United States had just landed and all airport operations were to halt. After taking a second to remember who the VP of EEUU was, I start to realize what the Costa Rican people mean by the term "Pura Vida." If we were at MIA, I'm sure people would be up in arms, cursing up a storm. Here? Not even a shrug of the shoulders. Everyone just popped a squat and chatted. We had to laugh, epecially since all the 3 of us had to left to eat was a king sized bag of Raisinets (which we fought over). After a 30 minute wait- no worries, pura vida!, we clear customs and walk outside to meet our driver. No driver. No fancy Mercedes. 20 minutes go by, and still no driver. In the interim, these 2 creeps are all over us asking us where we need to go. Long long story short, it turns out the creeps were officials of the turismo bureau and THEY ended up driving us to the hotel. Oh P.S., our driver WAS there but LEFT US!!! Guess he said screw the Joe Biden mess. As we pulled out of the airport I swear the ENTIRE COUNTRY was leaned up against the airport border fences hoping to get a glance of big JB. I tell Tim: if he is staying at our hotel, we're royally screwed. Well guess what...?!
Our hotel is bbeeeeaauuutiffffullll. Beyond beautiful. The tower/concierge/club/whatever you call it level is only 6 months old. Pristene is a good word for it. Do I have to come home?! Luckily we arrive right as the concierge spread is open for business. Beautiful foods, but then again our last meal consisted of Raisinets so anything at this point would appeal to us. We decide after eating (it's 6:30 pm, 8:30 pm FL time), that J.R. would have to swim. We had the entire place to ourselves and J.R. TORE THE PLACE UP! Fun. Before passing out in bed, we turn on the TV to find the movie Cars is playing en espanol. Can a girl go a week without encountering a Pixar film?! We just had to laugh, again. Pura vida baby!
After the debacle at the airport we weren't sure ANYone would get us from the hotel and take us to the clinic. But Rafa appeared. Very nice guy. We met another couple from New York who has 12 year old son with J.R.'s very same diagnosis. Lots to chat about with them. Come to find out they are staying in the next room. We later learn that we're probably the only two families at the Intercontinental because of the Vice Presidential summit going on! Tim KNEW there was a reason why we were asked to keep our curtians shut during our stay. How do you say SNIPER in Spanish? P.S. The VP of Honduras is way shorter in person.
Okay this blog entry is wayyy long. Take a bathroom break and I'll post more in a few...
-K :)
Saturday, March 28, 2009
Let's Try This Again
Since our last post, we've canceled Costa Rica TWICE! J.R has had 3 infections in 6 weeks. Ready or not (he's on his 3rd day of antibiotics) we are taking off Sunday afternoon.
The doctors at the Institute for Cellular Medicine have been amazing. They assure us that they will not administer treatment to J.R. (or take our cash) if he still has an infection Tuesday. In fact, they're changing our schedule around a bit to make extra sure he is well before any injections.
I'm leaving so much out regarding ICM's protocol. If you are interested in knowing more, just respond to our posts.
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