Ikika Endrina's Home Page

As the year's go by and thing's change the one constant in our live's is the love we have and as long as life contiues we will always have each other.......


Ikika 13 yr old

CNs Germinoma 12/01 , relapse 11/03
Chemotherapy: cisplatin 160 mg
Carboplatin 4,000 mg
Etoposide 1,800 mg
ifosfamide 12,00mg

Radiation: whole brain 3060cGy, craniospinal 1980cGy with boosts to 3060 to sites of relapsed disease

Surgery: right frontal transcortical subchoroidal approach to removal of the third ventrical tumor, removal and replacement of a right frontal ventriculostomy.

Complications off therapy: Endocrine: hypothyroidism, diabetes insipidus, partial ACTH deficiency, cortisol dependency and hearing loos







IKIKA'S CONTINUES TO ENJOY A CANCER FREE LIFE!!! THIS TIME FOR GOOD.....














Welcome to Ikika's Place! IKIKA WAS DIAGNOISED DECEMBER 24TH WITH A GERMINOMA TUMOR IN HIS BRAIN.HE WENT THROUGH SURGERY,CHEMO AND RADIATION.HE WAS CANCER FREE FOR FOR ABOUT 5 MONTHS AND THEN HADENT BEEN FEELING WELL THE DOCTORS THOUGHT HE HAD THE FLU BUT ON THE 5TH WEEK OF THE STRANGE FLU I TOOK HIM IN AND ASKED FOR A MRI.SO ON NOVEMBER 17 WE FOUND OUT HE HAD 2 NEW TUMORS ALSO IN HIS BRAIN.SO WE HEADED BACK TO SEATTLE WASHINGTON FOR MORE TREATMENTS.HE AGAIN HAD CHEMO AND MORE RADIATION THIS TIME TO HIS BRAIN AND SPINE SO WE FEEL LIKE IF ANYTHING WILL BRING HIM A CURE THIS WILL BE IT! Update... 7/8/2007 he has now been off treatment for 4 years. the radiation and chemo have taken so much from him. Life is a contiued daily battle. they might have brough cure but very little quality of life. His memory is gone and he has started losing his hearing. He stuggles socially and never speaks with any kids out side of school. He seems to be upset more than not and is contiually fustrated by school. what a life for a kid. I see those parents who say their thankful for all the cancer journey has brough them. well im not thankful about any of it. It has ruined his life and as time goes on it just keeps taking more from him. the cost of the cure is higher than i could have ever imagined!




If I could give any gift in the world, I would give more cures for cancer. Cancer is not a fun disease and touches many people's lives daily. It can be devastating to families who have a loved one with cancer and hardest on the cancer patient.
My gift of a cure for cancer would eliminate the time a family has to spend apart from one another. So they have someone to make them feel better and to give them more hope. This gift would chase away the loneliness.
Bruises. Who wants the arms to look like a war zone? My second reason is there would be no more blood draws. So the don't have bruises all over their arms. My gift would not have any needles piercing the skin. There won't be and more bandages the pull the skin and leave a sticky reminders.
My third reason would be no more chemicals pumped into the body so their stomachs don't get sick. A room soaked in chemical smells won't be something they miss. Likewise, they wont have seizures or other problems due to the strong chemicals. Being cancer free would be the greatest gift of all.

Ikika Endrina
age 11
in remission

Journal

Thursday, March 26, 2009 7:01 AM CDT

Ikika did so wonderful in the play at school through the Missoula children's theater. He had one of the main parts and pulled it off flawlessly. It was amazing to watch him up there, I had thought he was terrified of public performance but actually he told me he is terrified of not knowing exactly what he is supposed to do in a public performance. He missed the schools Christmas performance because he wasn't sure what he was supposed to be doing. I felt terrible he came home from school threw up that night and then stayed up the whole night. So of course by the next day was sick from all the worry and didn't go to the performance. The odd thing about it was he tried telling the music teacher but she just thought he was making excuses I guess. Although in her defense she did go to the principal and spoke with him and he never mentioned Ikika's IEP but rather told her Ikika had to do the program. If ikika would have just gotten a little extra instruction he would have been ok and done the Christmas program, but after I spoke with the music teacher I think she understands and will take the time next year to make sure Ikika understands so he will be able to make the program. They had a choir festival and she sent home the songs so Ikika could practice them and he was so excited about going to choir festival and then he ended up with the worst bloody nose he has had in a very long time. It bled for 50 minutes! We ended up in the ER because we couldn't get it to stop. They ran labs everything came back ok except his red count was down but he had a bloody nose a couple days before that was pretty bad to so he had lost a bunch of blood that week. We did figure out it was because the humidifier was down to 10% and it needed to be at 35%. That life time limit of radiation to his head really took a toll on his sinuses.

On to some good news! It looks like Ikika will finally be getting the help he needs for math in high school. I am not sure why he is finally getting help but I think it has to do with a different principal. Ikika will get a full pull out for math and reading in high school. He will be able to work with A teacher that he seems to be able to do well with. Although we will miss Mr. Ross, he has such a amazing way with Ikika and Ikika has learned so much from him. He will be one of those teachers Ikika remembers his whole life! I will be posting new pictures of the play this afternoon so check back!

Hospital Information:

Patient Room: HOME NOW IN HIS OWN BEDROOM

Children's Hospital and regional medical center
4800 Sand Point Way NE
Seattle, Wa 98105
(206)987-2050

Links:

E-mail Author: enneberg@northerntel.net

---

 

Your gift will help millions of people stay connected with friends and loved ones during challenging times.

---

 

This page has been viewed 20320 times.

Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.