Hi,
I haven't written in a couple of days because I wanted to make sure the plan was in effect before I updated everyone.
Since Hans has no evidence of disease he can now go into what is called the Maintenance Phase. Typically for Neuroblastoma, a child would go on 6 months of Accutane to prevent relapse. However, Accutane is pretty rough on the kidneys and since Hans had a poor kidney function test, we had to find an alternative. Hans was given a prescription for Etoposide, a chemotherapy, he should be able to take it in pill form. Over the weekend though, we found out that it's hard to dose Etoposide right for someone Hans' size. The docs are working on it - hopefully by the end of the day we'll have the medicine in hand and we'll get him started. Our neighbor, Carlie, also took Etoposide for her maintenance phase. Her mom, Charon, said that Carlie had to work through a couple of problems with Etoposide. At first, the dose was too strong and her blood counts dropped low and she went back into the hospital with fever. I'm sure we're not "up" for that again. But, here we go! One thing we've learned is that all kids are different. The idea is to find a low dose of Etoposide so that the kid can go about normal life. Our Dr. told us that Hans' hair should still come back in, but Charon said that Carlie's hair initially fell out with Etoposide. I suppose we shall see!
The good news is that Kevin and I have been amazed with Hans. His energy level seems to have soared back up to where it was at last summer. He's funny and amazing. Four years old has always been one of my favorite ages. The kids just say funny things and have such magical thinking. I am happy to be able to enjoy the charms of this age here at home and not from the confines of the hospital. Hans has gained some weight now, he's up to about 27 pounds (from 23 pounds just out of transplant)! He appears to be growing a bit too. He's just over 93 centimeters - throughout this whole treatment period he has measured anything from 89 to 92.5 centimeters. It's really nice to see some growth since he hasn't grown at all this whole year. He's pretty tiny for a four year old. But, somehow it just enhances his cuteness and lovability for us.
Other good news: We get our Elle back tomorrow! Yay! My mom and Elle are coming in on Tuesday afternoon. Elle has been having such fun up in Washington seeing all our family and old friends that I'm not at all sure she is ready to come home. My mom will stay a week, and I'm grateful that her trip coincides with the Renal Appointment on Wednesday. It's always helpful for me to have another set of ears when getting a lot of new information.
Thanks for all your comments! It was really fun to read them all! PL - I think Hansie's hair is looking either dishwater blond or light brown - it's sort of hard to tell when there is so little of it. Even less of it showed up in the sun. I think I did a little overkill - I wanted to take a photo in natural light so you could see hair and eye color (Elle's request), but it's pretty washed out.
Lara
I haven't written in a couple of days because I wanted to make sure the plan was in effect before I updated everyone.
Since Hans has no evidence of disease he can now go into what is called the Maintenance Phase. Typically for Neuroblastoma, a child would go on 6 months of Accutane to prevent relapse. However, Accutane is pretty rough on the kidneys and since Hans had a poor kidney function test, we had to find an alternative. Hans was given a prescription for Etoposide, a chemotherapy, he should be able to take it in pill form. Over the weekend though, we found out that it's hard to dose Etoposide right for someone Hans' size. The docs are working on it - hopefully by the end of the day we'll have the medicine in hand and we'll get him started. Our neighbor, Carlie, also took Etoposide for her maintenance phase. Her mom, Charon, said that Carlie had to work through a couple of problems with Etoposide. At first, the dose was too strong and her blood counts dropped low and she went back into the hospital with fever. I'm sure we're not "up" for that again. But, here we go! One thing we've learned is that all kids are different. The idea is to find a low dose of Etoposide so that the kid can go about normal life. Our Dr. told us that Hans' hair should still come back in, but Charon said that Carlie's hair initially fell out with Etoposide. I suppose we shall see!
The good news is that Kevin and I have been amazed with Hans. His energy level seems to have soared back up to where it was at last summer. He's funny and amazing. Four years old has always been one of my favorite ages. The kids just say funny things and have such magical thinking. I am happy to be able to enjoy the charms of this age here at home and not from the confines of the hospital. Hans has gained some weight now, he's up to about 27 pounds (from 23 pounds just out of transplant)! He appears to be growing a bit too. He's just over 93 centimeters - throughout this whole treatment period he has measured anything from 89 to 92.5 centimeters. It's really nice to see some growth since he hasn't grown at all this whole year. He's pretty tiny for a four year old. But, somehow it just enhances his cuteness and lovability for us.
Other good news: We get our Elle back tomorrow! Yay! My mom and Elle are coming in on Tuesday afternoon. Elle has been having such fun up in Washington seeing all our family and old friends that I'm not at all sure she is ready to come home. My mom will stay a week, and I'm grateful that her trip coincides with the Renal Appointment on Wednesday. It's always helpful for me to have another set of ears when getting a lot of new information.
Thanks for all your comments! It was really fun to read them all! PL - I think Hansie's hair is looking either dishwater blond or light brown - it's sort of hard to tell when there is so little of it. Even less of it showed up in the sun. I think I did a little overkill - I wanted to take a photo in natural light so you could see hair and eye color (Elle's request), but it's pretty washed out.
Lara
5 comments:
I think that we can all agree that Hans is pretty amazing! And the pic with his new shades and big smile certainly depicts the wonderful, funny little person that he is.
We're thankful for the growth - it is certainly good news and a sign of his current health! So glad that you are having a much deserved break from the TCH routine.
I know that Elle is anxious to return home, but we certainly miss her! We had great fun!
Love to you all,
Grandma Kathy & Grandpa Dale
Hi you guys - poor Elle was still asleep this morning when I took them to the airport!
Good work Hansie - keep eating, keep getting taller and as Erin says, quoting from "Ike the Horse to Samuel the Sheep ..... Grow Hair!" love, p.l.
Glad to hear Hans is getting back to his old self, gaining weight, getting taller. All great news. I especially loved hearing he's doing the bear dance again!
Elle - I'm sorry I missed you up in Washington, but glad to hear you had a great visit.
Love and prayers,
Aunt Holly
Hi! My computer has been down for a few days. It was so nice to turn it on and see the good news!!! I am so thankful Hans is growing, he truly is amazing! I'm glad life is becoming more normal for your family. I sure had fun with Elle and Grandma Kathy, we all wish you all were closer so we could spend time with you. Have a great weekend! Love, Cindy
Dear Lara and Kevin,
Finally got caught up on blog reading. Postings as usual are wonderful, love the birthday pics, and I am so happy to hear all of the good news. NO CANCER...NO CANCER!!!! I'm so happy I'm crying!
Earlier this week I called the house and left a message. Have been thinking of you often and missing my extended family. Let's get together sometime soon. I would love to see you all.
Love,
Leigh Ann
Leighb3@aol.com
caringbridge.org/visit/reniroo
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