My wife spoke with Evan's mom today. Here is what she sent out to some of the other moms/friends. Keep the prayers coming. They seem to be helping......
"Hi Everyone,
I saw Wendy today and wanted to give you an update. They are heading back to Children's tomorrow (Wed) morning to start round four of chemo. They are actually a week behind in the chemo schedule as they were waiting to hear from Sloan. They still haven't gotten a firm date for the antibody therapy at Sloan, so they are just going forward with the next chemo here. I think Wendy is happy with that. She was getting nervous b/c there would be such a lag time between chemo treatments if Evan had to go to NY now. So, they'll be at Children's til Sat. Then home.
Evan is doing great. They were on their way to the park behind my house when we talked. He is back up to his pre-cancer diaganosis weight and his appetite is great. This round of chemo is going to be like the first two rounds, so they are expecting Evan to feel pretty yucky. They are also pretty sure he'll be back at Children's w/some kind of infection later next week. He was lucky not to go through that this past round.
Anyway, just wanted to fill you in. If you have a chance, give Wendy a call at Children's this week. I'm sure she'd love to chat w/you! Amy"
Friends of Evan's family have established a website as another opportunity the spread the word for raising money and getting updates out on how Evan and the fund are progressing. It is also an opportunity to make others aware of this rare form of pediatric cancer.
It was quite touching for the family to learn that one of SFC's very own had been through some years ago what they are going through now. They were ever so encouraged to hear that Going Deep's daughter beat this thing and were given additional strength to continue the fight.
Gavin, Wendy and Evan want to thank all of you for your prayers and support. It truly does make a difference.
Hi Girls-
I called Wendy a little while ago to see how things were going at Sloan. She had a lot to say, so I will do my best to relay what I remember.
They flew to NYC on that little prop plane Tuesday and it was extremely bumpy with the wind. They are staying at the Ronald McDonald House which is five blocks from the hospital. The majority of kids there have neuroblastoma and they even met two families from Maryland. They feel very comfortable with the atmosphere at Sloan. People are very positive and friendly and things seem to be run more efficiently than at Children's. The doctor they are working with deals solely with neuroblastoma so they feel they are in experienced hands.
Today they get the results of two tests. The "biggy" is the bone marrow test. They will meet with the doctor this afternoon. Today Evan gets injected with the contrast for that sensitive bone scan (MgB?) he will get tomorrow. He is eating enough so that they felt he could be taken off the liquid nutrition. They went to an Italian restaurant which was nice and Evan thoroughly enjoyed his spaghetti one noodle at a time! Wendy says they also found a great NY diner near the hospital that she loves! Today they may check out FAO Schwartz which apparently is pretty close. They are looking for something fun to do Saturday night and then rented a car to drive back on Sunday.
If all goes well, Evan will begin getting his shots again (to boost his immune system) this Wednesday and then they will head back up to Sloan on Sunday to begin antibody therapy. Wendy was able to pick the brain of the 15 year old who has been undergoing this treatment and he described it as excruciatingly painful for fifteen minutes after the injection. Apparently they give you something like ******** after that and then patients sleep. Wendy says it is an outpatient procedure lasting one to two weeks (I think) and then in-between treatments they will begin radiation.
Sorry, but don't quote me on that last part.
Anyway, the good news is, they feel they are in good hands at a reputable facility and Evan seems to be doing well. Keep them in your prayers. Wendy says she'll be in touch after they get back Monday or Tuesday.
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They couldn't have Evan in a better hospital than Sloan!
Donation in the mail!
It's a shame that something so precious as a child has to go thru this.
Prayers sent and Best wishes!
I will be sure to forward this around for the sake of Evan and family, every bit helps.
I went similar with my father and It's a horrible expense and health insurance only covers parts of treatments. It's quite amazing how insurance,doctors, and hospitals determine your faith.
Your thoughts and prayers mean so much. If you can do more great but just knowing that people are pulling for Evan has been a blessing for this family. Remember that anyone interested in contributing is welcomed to review the account expenditures. www.evansfund.org
An email sent out by my wife...........
Hi Everyone,
I spoke to Wendy last night (Sun.). They had gotten home earlier that day. She said they are still waiting on the results of the bone marrow test and one other big test. The CT scan looked good, so that was good news. She said that you could have a good CT scan and still have cancer in your bone marrow, etc. So, they should get the results tonight or tomorrow. If there's still a fair amt. of cancer, they'll do another round of chemo here in DC otherwise, they'll head to Sloan Sunday.
Monday-Fri. will be the anitbody therapy and then the following week will be radiation twice daily for a week. So, up in NY for two straight weeks. Then they'll be home and will go up for a week each month to do antibody therapy. This therapy could continue for up to two years, I think she said!
Anyway, they really seemed happy with the care at Sloan. The only tough part will be that Wendy and Evan will be up in NY alone for most of the time . Gavin can't really take off work. So, I'm sure that'll be sooo difficult.
Just wanted to share the latest. Hope you are all doing well.
....but still fighting and looking forward to more treatments at Sloan. Keep the prayers coming. Here is an email update my wife sent out:
Hi All,
Not sure if you've talked to Wendy so I wanted to update you. I spoke to her last night. She said the results of the bone marrow test were good, but the other test showed some cancer in Evan's arm. So, the Sloan Dr. wants them to do one more round of chemo at Children's.
I think this will be the last round even if there is still cancer present. That's what Wendy thinks anyway. So, they will probably go to Children's very soon w/in a few days. This last round is going to be a really yucky one and will probably make Evan pretty sick. They are introducing something new to his chemo.
Anyway, after he heals from this round, they will have to go back to Sloan for all the same tests AGAIN. Then come home, wait for results, give Evan some shots for a week and then head to Sloan for the antibody therapy and radiation following. I think Wendy is a bit frustrated that they have to wait to go to Sloan and that they will have to go through the exact same thing once up there, but at least they know what they are dealing with at this point.
She's holding up very well and was in good spirits when I spoke with her last night and Evan is being such a trooper.
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