Well, the last update was posted with 5 days of radiation left. As of last Friday (April 10th), we are totally done with radiation! We told Dr. Wolden thank you, but we hope to not see you in this office again! Eli cruised through the last 7 days of radiation since it was just a boost and it was quick. Also, because it was a boost, he didn’t get nauseous or anything. His counts were pretty darn low and he wasn’t a fan of having to wear his mask anytime he was outside of the room, but it was important to keep him from getting any kind of little infection that would land us inpatient. I am happy to report that once radiation was over, they let us give Eli the GCSF shot on Saturday and Sunday and today his ANC was 4.7, which is well out of the neutropenic area. He knew he was waiting for a number higher than 1, so when the NP assistant (Kevin) told him it was 4.7, Eli said, “WHO HOO! I’m not Neutropenic!” and ripped his mask off. I think Kevin got a kick out of that. We are in the process of debating the chemo plan with them now because they want us to wait until 4/27 to do the chemo because they think his counts are going to continue to drop. We have begged to differ and think his counts are going up (they seemed to be going up even before we did the gcsf for two days). So we are going to see if his counts rise this week on their own so we can show that starting chemo a week earlier wouldn’t hurt, but I don’t know if we’ll get anywhere. Like most pediatric cancer parents, we don’t like to sit and do nothing, we like to be attacking every second we can.
Last weekend there was a big party for Neuroblastoma patients past and present and all of the doctors and nurses were there. They had posters up of all of the kids and it was pretty cool. Eli got to meet two of the players from the 1969 Mets. Eli even got to wear Rod Gaspar’s World Series ring. It was baseball themed, so we all wore our Mets shirts. I was glad we got to go, I know several families actually came to NYC on a special trip just to attend it. Dr. LaQuaglia spoke and talked about what got him into doing Neuroblastoma surgeries and talked about the positive data that is out there for the effectiveness of the surgeries. Then he said, “But you know, when I’m doing the surgery and I have my hands in your child, I’m not thinking about the data or the scans or the studies. I’m thinking about the parents…specifically the moms…and being able to walk into that consult room after the surgery and tell them that I did the absolute best that I could and that I got as much out as possible.” There were definitely some wet eyes in the auditorium. It was the largest group of people that completely understand this “Neuroblastoma world” that we find outselves in that we have ever been assembled with. Click on the thumbnail to see some pics from the event (although none really show the magnitude of the number of people there!)
Last Thursday night we bowling with some families at the Ronald McDonald House and had a great time. Eli likes to bowl, but I think the video game area is his favorite part. He is especially fond of Air Hockey. On Saturday we enjoyed a trip to the circus! Ringling Brothers was in town, so we took a House trip to Madison Square Garden and saw a great show (although Eli quipped that he didn’t think it was the GREATEST show on earth). I think Eli mostly enjoyed playing with his laser gun and showing people how the laser pointer would go all the way to the other side of the arena. I also found out from a friend at the NYPD that pointing a laser pointer at people in NYC is harassment according to the law. 🙂
We also had a very nice and very traditional Easter. Much like in all my years growing up, it included eating a Dominican dinner of pork/chicken/rice while listening to a singer from the Dominican Republic jam out with a DJ and watching a clown/magician entertain the kids followed by an Easter Egg hunt with a few dozen children. Ok, so my Easters growing up were slightly different, I don’t really remember a clown. 🙂 I thought I experienced a lot of culture in my years at Iowa State and from traveling around the world for work, but I think living at the Ronald McDonald House can expose you to more culture than you would get in many months of traveling. As I was watching people dance around and having a good time, my first thought was to shake my head and think “This doesn’t really feel like Easter.” And then I thought, “You know, if you think about the significance of Easter and the fact that our Savior defeated death and set Himself apart from every other religious leader in all of history, I think dancing with overflowing jubilation and giving Him praise is definitely an appropriate response.” It reminds me of the chorus to the song “I Can Only Imagine” by MercyMe.
Surrounded by your glory
What will my heart feel?
Will I dance for you Jesus,
Or in awe of you be still?
Will I stand in your presence,
Or to my knees will I fall?
Will I sing Halelluja,
Will I be able to speak at all?
I can only imagine
I can imagine the parties that the Israelites had as they remembered God bringing them to the Promised Land of Canaan. Speaking of the Israelites, we also had a few Passover events and one night a Rabbi explained the Passover Sedar plate to the kids and let them try the different food items. Eli announced quite loudly that he wasn’t a fan of the Matzah. It reminded me of what a 5 year old Jewish boy would have been saying when he had to eat Manna (or even his parents after the first week or two of eating it). 🙂
Finally, I will end with a food review because people who have been following since the beginning have probably been missing my food reviews. Ok, missing might be a strong word, but I know one or two people that actually enjoy them, so this is for you! We are big Chinese food fans and thankfully NYC is anything but short of Chinese restaurants. In fact, there is a pretty good Chinese restaurant 1 block away called Six Happiness. Yes, six happiness. I think they got a great deal on their English translation service. Anyway, after a year and a half of a certain place, it’s nice to mix things up a bit. Yesterday I mixed it up by going to a Thai restaurant right next door to Six Happiness (called Spice) and got some great chicken curry that actually agreed with my stomach (I was pleasantly surprised). Today we decided to go up to Best Buy on 86th Street and I knew we were going to pass a restaurant Eli and I had discovered a while back that we both really liked called Empire Wok. They have lunch specials for $6 that come with an entree, choice of rice, and a side (egg roll, spring roll, soda, etc.) We don’t frequent this place often because it’s a little far away on 2nd Ave and 81st Street, but it was our second time and once again we really enjoyed it. It’s never busy, the helpings are generous, and the food is awesome (along with the great prices I already mentioned). Eli enjoys the Shrimp Lo Mein and spring roll, but he also likes stealing my General Tsao Chicken and Lacey’s Baby shrimp in lobster sauce. He ate like a pig today, which made us happy since he is sitting at 36 pounds right now. I really think the General Tsao chicken is the best I have had, and the fried rice is really good. So, the next time you visit NYC and want to check out a good Chinese restaurant for lunch, bypass the Wok ‘N Roll and head for Empire Wok. If you want to take it to go and don’t want to go all the way to 81st street, Six Happiness is also a good choice.
Thank you to everyone who has continued to pray for Eli during his treatment. Honestly, we attribute the fact that his side effects were minimal and that he avoided getting a fever to all of the prayers going up daily for him. We will count on more of your prayers as he goes through his next step of high dose Irinotecan and high dose Temodar. Thank you for being there for us!
Don’t forget, I’m continually posting pictures to our NYC photo album!
 |
| NYC |
Facebook
Twitter