We don't always understand God's plan, and frankly I don't think we should even try. My prayers are with you, young man, and know that God will take care of you.
Evan had surgery one week ago today to remove the lesion in his head. The surgery was scheduled for 4 and a half hours but it ended up being an hour and a half. During the surgery our name was called to see the neurosurgeon. We thought he wanted to discuss some aspect of the surgery and then complete the procedure. Instead, he told us it was finished and Evan did very well. The Omaya port was placed and about 90+ percent of the lesion was removed. Besides the brievity of the operation, the other news of the surgery was that the lesion was in fact growing from the brain, not out of the Dura. This confirms that Evan's second relapse is of the central nervous system. The protocol that he is on is definitely the correct one for him.
Following the surgery, he was in the hospital for 2 days and then released. He had ******** for the pain for about 24 hours, switched to Tylenol with ******* for about 24 hours and then did not require any more pain meds at all! He has 2 stitch sites on his head, one on the top that is about an inch and a half (where the port is) and the other is on the left side (where the lesion was) and is about 3 inches. He will get the stitches out next Thursday. He is thrilled that he can't have his hair washed until his stitches are removed. He went from hating the stitches to loving them once he found out about the no-wash rule. His exact reaction was, "stitches rock!"
Today, Evan had a spine MRI that took about an hour. He was awake and extremely cooperative all the way through, even though he hates the noise of the MRI machine. Later, he had his first radiation appointment. He lays on his back and they put a custom formed mask over is head so that he can't move. He lays on top of a formed back plate as well. Turns out, they didn't actually give him any radiation today, they spent about 45 minutes lining him up and taking xrays and measurements to make sure everything is precise. Tomorrow, he will start the radiation.
Next week, he will get low-dose chemo AND radiation every day because the chemo (irinotecan) is a radiosensitizer that enhances the efficacy of the radiation. The following two weeks will be radiation only.
He is feeling great. Tons of energy and a big smile on his face. We are so thrilled to be close to finished with the first hurdle of treatment, the operation. When he actually gets all the stitches removed, we will consider step one finished.
We have been home for a short time over the last week and a half when the schedule allowed. Short stays at home will continue to be our strategy, when we have the opportunity and Evan is feeling up to it.
Evan has finished radiation!!! 17 sessions and he is done! He toleratated all of it very well. He had to be custom fitted with a mask that was clipped to a table so he couldn't move during radiation. Most kids and some adults have to be sedated so they can deal with the mask. Evan worked with it like a champ. Today that mask was papermached and painted by Evan to look like a motocross rider.
Evan was reunited with one of the radiation techs with whom he has worked before, a very nice man named Kerry. Evan has declared that Kerry is his best friend because they have a lot in common...they like the same movies and music, they are both left handed and they both like chicken soup. Once we are at home and I have my computer hookups I will include a picture of Kerry in with Evan's photos.
Evan's counts have begun to drop due to the radiation and one week of low-dose chemo. Compared to last week, they have actually improved a bit! The doctors expect that they will slowly decrease so the counts will be checked regularly. He may require a blood or platelet transfusion in the next few weeks.
Evan has lost his hair and is not very happy about it. The first few days he wore a hat whenever we went anywhere. Today he hasn't worn a hat all day. I hope that is because he has gotten used to it. I told him that it will grow back and he keeps asking, "in how many days?" Gavin had his head shaved to join forces with his son.
We will be returning home this weekend. Evan's counts will be monitored and in about 3 weeks when the docs give him the green light, he will get high-dose chemo in DC.
We are thrilled that this chapter of treatment is coming to a close. Evan has done so well and we are thankful. He will be scanned again after chemo. We are hoping for NED once again! Please keep sending positive thoughts his way. Thanks for all of your support.
After a 2 week break after radiation, the doctors decided that Evan was ready to move on to high-dose chemo. He was admitted to Childrens' Hospital in DC on Tuesday and received 2 days of cisplatin and cyclophosphamide. Today, he received etopiside. Thursday and Friday he will receive etoposide as well as an outpatient. Unfortunately, he had nausea and vomiting on Tuesday and Wednesday. For 22 hours post infusion each day, they gave him constant fluids so that the chemo did not rest in his kidneys and bladder for too long or else it could have caused damage. So he had to urinate about once an hour or two around the clock. Today, he was so afraid to put anything into his mouth for fear of getting sick again. After we got home from the hospital late in the day and he took a nap, he woke up and was ready to eat. What a great effect being home has on him!
The doctors expect that his bloodcounts will drop by the end of next week and he will need to be admitted to the hospital for recovery. At this point, they do not believe he will need his stored stem cells in order to recover. We hope not too as the stem cells are his "rainy day" fund and our treatment options will be diminished if we don't have them available in the future.
On Wednesday of this week, our friend Owen Lea from Virginia lost his battle to neuroblastoma. Sweet Owen fought hard through 7 relapses with the help of courageous and positive minded parents who were always the first to find the bright side of a dire situation. We are heavy hearted to think that yet another child has lost the fight to this unrelenting disease. Please pray for comfort and strength for the Lea family.
With hope,
Wendy
Evan with his best Friend Kerry, the radiation tech at Sloan
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