The Leukemia & Lymphoma Society Team In Training

July 23rd: Van and I visited Tyler and his mom and dad at City of Hope today to deliver some halibut that Van caught in Alaska. Tyler’s dad said that Tyler had been up until 2:30 A.M. reading the Alaska cookbook I brought him, looking for halibut recipes. So, he is READY!

Tyler goes to COH three times a week for infusions of drugs–the one that is making his lungs better and another one for the graft vs. host disease (GVHD.) When we went into the room, we were greeted with a darling puffy-faced cheery little guy sporting an awesome mohawk! Even though he was hooked up to an IV pole, his witty sense of humor was intact and he seemed glad to see us. His next hair plan is to bleach out the mohawk.

He talked about various cities (Manhattan, Brooklyn, Orlando) he wants to visit after he gets completely through this–they all had restaurants with special dishes he wanted to try that he’s seen on the Food Network! He also has his uncle hunting down a caribou supplier because he found a recipe for a caribou dish in the Alaska cookbook that he wants to try.

We gave him the San Diego Rock ‘n’ Roll Half Marathon and Marathon medals that Coach Kevin got for him and he was delighted. We all decided that the half marathon medal is prettiest because it has blue sky on it. As many of you know, he loves medals! Thanks, Kevin!

Unlike the many times before I left with tears in my eyes, Van and I left the hospital with rejoicing hearts. Tyler is back!! — Virginia
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July 22nd: We’ve been dining out each night in celebration of Tyler being out of the hospital. But it was starting to add up; so to save money, we told Tyler to pick a recipe from a cookbook tonight and we’d make something at home. Tyler chose smoked salmon carpaccio followed by lobster risotto. Plan. Foiled. — From Derek, Tyler’s dad.
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Wednesday, July 14, Tyler’s dad posted this update on his Facebook page: Six days ago, we were talking with doctors about ‘Do Not Resuscitate’ orders. Today, we were talking with doctors about discharge orders. Six days ago, a social worker was offering her assistance in making funeral arrangements. Today, we were talking to Tyler about celebratory dinner reservations. It’s been less than a week, but feels like a lifetime- or perhaps a 2nd life.

Friday, July 16, he sent this update: I’m typing this update from my sis in-law’s house….and I have my boy with me! Next on the agenda- a sushi celebration. Tyler is home again! And he gets to eat his favorite food–sushi!! How amazing is that?
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July 6th: “After serving a 1 month sentence at the hospital, Tyler Martin Cordova, age 7, was granted time off for good behavior today. He’s been released into the care of his parents, with instructions to report to his parole officer (doctor) daily. He has been issued a stern warning not to leave the area while invvestigations… continue. If seen, please report to the authorities.” — From Tyler’s mother, Holly, on Facebook

After many setbacks and procedures, Tyler is once again staying with his aunt so he can be close to City of Hope, as they require him to not be more than 20 minutes away. And after receiving a couple of cookbooks from Alaska, he plans on trying the many fish recipes he now has in his collection. He is amazing! — Virgina
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June 11th: Tyler update- Good news: Ty’s energy level is picking up and he is starting to smile and joke around again. Also, some of the swelling has reduced in his extremities and he doesn’t need nearly as much oxygen support as he did when he first got here.
On the downside, he now has steroid-induced diabetes and will need insulin shots. He’s also getting Lovinox shots; so combined, he’ll need 5 injections/day for now. — From Derek, Tyler’s dad.
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June 8th: After being admitted to City of Hope last week with pneumonia and a blood clot and after a rough several days and suffering a second blood clot, now Tyler is doing a bit better. He even played a game on the computer. He needs our constant good thoughts and prayers. — Virginia
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May 25th: Tyler’s been on really high dose steroids, which is one of the reasons the doctor wanted to start photopheresis. Now that those treatments have started, we’re aggressively tapering the steroids, but so far the side effects (puffiness, weight gain, major appetite, high blood pressure, high glucose…you know the drill) haven’t subsided. So he is uncomfortable, but hopefully things will start to get better now that his steroid dose is lower. Last week Tyler made ceviche, taquitos and burritos in cooking class. He was the only kid in the class willing to eat the ceviche (something about raw shrimp “cooking” in lime doesn’t appeal to the 7 year old set), but he was a little offended about making vegetarian taquitos (they had squash filling). As he told me, “I’m the opposite of a vegetarian – I take veggie meals and figure out how to put meat in them, not the other way around!” — From Holly, Tyler’s mom.
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May 13th: Tyler is having some skin flareups due to graft v. host disease, so his doctors say this can be helped with treatments called photopheresis. This is a procedure in which they take his blood out, treat it with a special light, and put it back in. Since this will involve two treatments a week, every other week for a year, Tyler had surgery to have a catheter called a Hickman put into his chest. At first, it didn’t work–they couldn’t get blood out. He went to City of Hope three times last week and stayed all day with no success. Tyler, the stoic one who never complains about any discomfort, was in pain all last week from the surgery. He had trouble walking and couldn’t do much activity without hurting. He even missed his cooking class!

The good news is, they finally got the Hickman to work this week and he had his first treatments. PLUS, he felt well enough to go to his cooking class and Chef Tyler’s creations for this week were ceviche and tortilla soup which his mom says were delicious. He has plans to cook fried catfish and pasta ponza next. — Virginia
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April 30th: Tyler the chef: Tyler enjoyed the trip to Washington to see his grandparents went very much. Although he did make some crab empanadas that his mom says were delicious, he and his grandfather enjoyed going to many restaurants to try different cuisines. Last week in his cooking class he made spanikopita (cheese/spinach pie,) baba ganoush and chocolate covered bacon. (This is making me very hungry!) According to his mom, Tyler and his dad inhaled the bacon dessert! He is busy planning a brunch menu for both of his grandmothers who are coming to town for Mother’s Day. What lucky grandmas!

Tyler the patient: Since he is still having some skin flare-ups that could be graft vs. host disease, his doctor decided to start a new treatment called photopheresis. They draw blood, treat it with special lights, and put it back in by IV–sort of like what dialysis is. The downside is that it is a long-term plan, with periodic treatments over at least a year. His mom was worried that he would be bothered by the additional hospital visits, and the disruption to normal life, but he doesn’t seem too concerned about it and is taking it in stride. He’s a brave and determined little boy. Looks like he’ll be getting a lot more beads for his Beads of Courage necklace. He’s our hero and we love him! — Virginia
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April 4th: Good news: Tyler’s doctors cleared him to go to Washington with his parents to visit his grandparents! This is huge because he loves to travel and hasn’t been able to for two years. He’s really excited to be able to fly again, and is already planning out what dishes he will make with his grandma!

Speaking of Tyler’s cooking, here’s a report on Easter from his mom: “While Tyler helped me make Easter dinner, he was completely in charge of Easter breakfast. He made a Fajita Frittata (which he first made in his cooking class), and it was delicious. And I’m not just saying that because I’m his mommy!”

Looks like things are moving along wonderfully for our Tyler! It’s about time!! — Virginia
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February 2nd 2010: Tyler has gone to 2 cooking classes so far, and he just loves them! He’s made smoked mac and cheese, green bean salad, deconstructed apple pie (the filling was a dip, with cinnamon tortilla chips), and brookies (half brownie, half cookie). He’s having so much fun, and meeting a lot of really nice kids in class. By the way, I’ve brought a camera to both classes, so I could send you pics of Ty in action, but it’s not really set up for picture opportunities. The parents are meant to leave during the classes, which is really great for Ty. Since he’s not in school yet and spends all day with Derek and me, he doesn’t have much opportunity for time to be independent. Although I’d personally love to spend every minute with him, for his own sake I’m kind of glad he basically kicks me out as soon as we get there!– From Holly, Tyler’s mom.
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Tyler is doing very well. He made one of the gumbo recipes from his TNT cookbook last week and it was delicious! He plans to try Terry’s chicken soup and huffy puffy bread this week, and I can’t wait! — From Holly, Tyler’s mom.
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December 22nd: Tyler DID get to come to the Spring team’s honored teammate potluck and was he in good form. I mentioned that he had to go back to the hospital because of infections instead of going home. Apparently, when he got there someone asked him how he felt about it and he answered, “Well, being in the hospital is not good, but it’s not as bad as being in jail.” His little spirit soars! Looking like the Pillsbury doughboy because of the steroids they give him for graft vs. host disease from the transplant, he enthusiastically opened up the many, many presents the team presented to him. As his mother told his story, he nodded in approval and added things she left out. By the way, his mother said he pours over his recipe book! If all goes well, he might get to leave his aunt’s house and go home today. Yippee for Tyler! — Virginia
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December 10th: Van and I met Holly and Tyler at City of Hope today where Tyler was getting his school session because we had stuff to deliver to him before he goes home to Valencia. Tomorrow is his 100th day after transplant, so if all is well, he gets to take off his mask and eat any food he wants and go home tomorrow. He will still be coming to COH twice a week for school and will check in with his doctors for follow up visits for several months.

He has a plan for everything he wants to eat and has a list of restaurants he wants to go to. The first thing on his list is sushi. He was energetic and had a sparkle in his eye. It’s obvious he’s still on steroids, though–he’s quite puffy–and he still has the port in his head. When I handed him a T shirt we got for him in New Orleans with alligators on it, he remarked, “Oh, those are crocodiles.” When I replied they were alligators, he said in true Tyler fashion, “Oh yes. Alligators are quite common all along the Gulf Coast.” (I’m sure that when I was 7 I didn’t even know there WAS a Gulf Coast, let alone that New Orleans was on it.)

I was heartened by seeing Tyler looking so well and acting like his old self. It was also good to see Holly looking rested and healthy. Fingers crossed that every day gets better and better for that little boy and his family. — Virginia
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November 2nd: Tyler was so happy to be at his Aunt Dorian’s, and to be able to trick or treat. He’s cooked about 6 dishes so far (the first being the avocado eggrolls that he mixed and rolled himself – delicious). It’s so great to have him home! — From Holly, Tyler’s mom.
[Photos: See Tyler's Beads of Courage and his Halloween Sword of Blood!]
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October 30th: The hospital worked out a way for him to be in the Halloween parade of the children today and he was very excited. He told his mother he wanted to be the grim reaper–she mentioned that it might not be the best costume for a pediatric cancer ward, so he settled on being a Ninja. Since I know this is his favorite holiday, we brought him some Halloween stuff including a sword I got at Walmart with blood inside it. He went CRAZY!! He couldn’t stop playing with the sword and turning it upside down to watch the blood trickle down. He was excited that now his Ninja outfit was complete. Success!!

Tyler was very perky and looked great. His Bell’s Palsy is getting way better and he showed us some 3-D Halloween scenes he had constructed out of the things the hospital staff had brought to his room since he can’t go to his group. He’s a very artistic little boy! I was impressed.

Remember the beads of courage? Well, he proudly showed us the necklace which now measures probably 5-6 feet long! And one of the new ones is a giant one that says STEM CELL TRANSPLANT. It’s sobering.

The doctor told his mother that if tests come back O.K. tomorrow, then he may be able to leave the hospital and go to Aunt Dorian’s house.

Van and I were heartened after our visit with Tyler this time. This sure is a roller coaster, but at least we’re in a high spot right now.
– Virginia
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October 27th: City of Hope has instituted a visitation policy that only allows two people at a time in his room (including caregivers) and all visitors have to be over 18. It makes things a little tricky because Holly or Derek really need to be with Tyler incase doctors or nurses come in. So for him, he can really have one visitor at a time … but these rules might have changed last night. Tyler tested positive for c-diff last night and is now in isolation. Poor guy. Luckily this is very treatable and eeryone was worried that he had GVHD in his stomach so this is a much better outcome. On the downside, because he is in isolation, since this is so contagious to the other kids, he cannot attend the hospitals Halloween activities. He was really looking forward to them and he was very upset when he found out he couldn’t attend. We are still hopeful that once the c-diff is under control he can be discharged. Poor guy has been there for over 2 months. Hope all is well. — From Dorian, Tyler’s Aunt
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October 21st: Tyler is feeling a lot better – now we just need to wait for the virus culture to come back clear. Until that happens, he can’t leave the hospital. The good news is that Tyler is in good spirits and reading his recipes! — Virgina
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October 14th: Unfortunately, Tyler picked up something called the BK virus which is common for transplant patients. His family isn’t sure how long he will have to stay in the hospital. Let’s keep those thoughts and prayers going down to City of Hope and right into his room. His mother said our recipe book [view photos] helped him through the disappointment of not being able to leave the hospital. He spent an entire day pouring over everything in it! — Virgina
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October 6th: Tyler and his family just got the results of Tyler’s bone marrow biopsy today. He has 100% engraftment which means his body has totally accepted the transplant. He is expected to be discharged to his Aunt Dorian’s “bone marrow half way house” on Thursday, which is 2-4 weeks earlier than expected. In celebration, for breakfast he ate Froot Loops, French toast, and peas. (What a character he is!!) — Virgina
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September 29th: Things are actually going great. Tyler is feeling stronger every day, and he really doesn’t have any of the bad symptoms from a couple of weeks ago. The doctor told us this morning that he thinks Ty should be able to go home pretty soon (which I think means 2-3 weeks). He gets his bone marrow biopsy on Friday, to see how the engraftment process is going – they want to see at least 95% of the marrow being from the donor, so I’m crossing my fingers for that! — From Holly, Tyler’s mom.
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September 24th: It’s +22 days since his transplant, and Tyler is getting stronger every day! — Virgina
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September 22nd: The TV Guide channel is running a program “Melrose Place, Where are they now” on October 4th (at 5pm or 8pm) and they are using an LLS clip from the golf event in Jack Wagner’s segment. Tyler is part of that segment. Be sure to tune in!!
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September 20th: +17 days since transplant and he looks so much better today! When his Aunt Dorian came to the hospital Saturday morning he was wearing a UW jersey and watching the UW vs. USC game. He told her, “I always root for whoever is playing USC.” (He’s an avid UCLA fan!)
Keep those good thoughts going down to City of Hope and Tyler’s room! — Virgina
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September 18th: +15 days since transplant. Counts are improving, skin is peeling, nose is very congested. He tested negative for swine flu. He keeps chugging along but it breaks my heart to see him fight so hard. — Virgina
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September 15th: Tyler’s Aunt Dorian reports that Ty is still hanging tough. 13+ days since transplant. He slept most of the day yesterday but is more alert today and his mom is reading him Harry Potter. Blood counts are coming up quickly but he may have contracted a mild version of swine flu. Luckily his counts are high enough to fight it.

Let’s all send him a good ole TNT “Go TEAM!!” — Virgina
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Here’s a photo from Virgina of the FINISHED pillowcase. Tyler couldn’t open his eyes to look, but his mom LOVED it. Later she emailed me to tell me what a boost it was to get it and to know we are thinking of them. Yea!!