Actually, we do not know when or how this started to grow in her head. All we know is that since it all started, Khetam has changed a lot. Every two weeks, she was having a high fever with vomiting and diarrhea for no reason. We did a lot of blood tests for her, but all the doctors said was that Khetam was having a lack of blood (leukemia) and we just needed to feed her well and give her iron and vitamins and everything would be okay .
But nothing was okay. Every two weeks she had more than 38.5 fever. And every time we did more tests, they said the same thing: "Give her vitamins and feed her well."
Slowly we started to see that her right leg was having some problems. All the time, her leg was shaking when she would stand and she couldn't stand on it very well. We took her to an orthopedist to check on the problem with her leg. He also said that everything was okay . She also started to be afraid of closing the door or turning off the lights. She didn't want to play or do any such things, and she was tired and sick all the time. Her meals also started to change. All she was asking for was chocolate and cola to drink. She could eat a full box, but when it came to food she didn't want any.
I remember the last time she got a fever, and I took her to the hospital. I thought it was Covid or autism, or maybe someone was scaring her. But none of that was the reason.
Every test was okay. But her blood test also showed that she had leukemia. They asked us to stay for a couple days to make sure that she didn’t have any bacteria in her blood. I spent 4 days in the hospital with her seeing more changes in my baby girl.
On Thursday, February 25, 2021, we could see that her right leg went to the inside a little when she walked and she couldn’t stand on it very well. But on Sunday, February 28, 2021, both her legs went out while she was walking. They both were directed outward very far. She couldn't walk more than a few steps without falling.
I asked to get a CT for her head to make sure everything was okay. Even when I felt that it was not the nerves, the doctor checked her leg’s reflexes and there was no reflex while he was checking. So he asked for the CT.
On Tuesday, March 2, 2021, we did the CT. Immediately, they asked us to go to the bigger hospital where they would tell us what we should be doing. In the CT we saw a big tumor in the middle of her brain and water trapped on four sides.
On the MRI they did on March 4, 2021, they told us that there was a vein that the tumor had made to feed on her blood. And that was the reason why she had leukemia. They explained how difficult the operation is and that it would take at least 7 to10 hours. We knew that if they came out before this time, it meant that we lost our baby girl.
It took 9 and half hours. But thank god that everything went well that day. We were so happy. But the next step is what we were afraid of: what kind of tumor is it? Is it cancerous or not?
On March 11, 2021, they told us that she was diagnosed with ATRT, a rare and aggressive cancer, and that there is no cure for it.
It was so hard to hear that my daughter could die at any moment now. But when we saw how brave she was after the operation, we had hope that maybe she would be cured and our life would come back.
They put a Hickman line in on March 18 for chemotherapy. On the same day, she had some shocks and didn’t wake up at all as if in a coma. They did a CT and discovered that the remaining space in her brain was so big and full of water, so they did another operation and put a drain in to suck it all out so she could find her way back to us and wake up. In the end, they decided to put a permanent drain inside her head.
All went well and finally she started to wake up.
Khetam started her first chemotherapy 3 weeks after the big surgery. It was really hard. She lost a lot of weight. At first, they put a feeding tube in her nose, but when she kept taking it out they put a permanent one in her stomach. She couldn't open her mouth because of the wounds from a mouth ulcer. She was crying slowly and wailing.
After finishing the first chemo, Khetam lost a lot of her IQ. She also was wearing diapers and could not walk or stand or talk.
She started to earn back her strength before the second chemo. Everything went well. I helped her by massaging her body and cleaning her mouth 3 times a day so it wouldn’t get as bad as the first time she had chemo.
But bad luck. Because she was itching her wounds, she accidentally opened one of her head wounds where the permanent drain was and water started to come out of her brain. They cleaned it up and closed it once again. But after she started the second chemo, the wound opened once again on its own because she had no immunity, and once again they had to clean it up and close it again. But this time she caught a bacteria inside her head called “Pseudomonas aeruginosa”. Then began a 40.5 fever, pain, yelling. She couldn’t move her neck or head. And the worst thing was that Khetam’s HB was 6.4. She had no immunity at all and the platelet count was 20 thousand when it was supposed to be 50 thousand at least.
They told me that a surgery must be done. We needed to take that drain out of her head or she would enter into a coma and die.
There was also a possibility that she could die during the surgery. But this must be done. This happened in the month of May.
Since May, we stopped every treatment because she couldn't bear this kind of bacteria. She was supposed to travel to New Jersey in America for radiation, but everything was canceled. She had no other tumors and her head and spine were clean. But we knew at sometime the cancer will start to spread. She took Antibiotic therapy and started to heal from the bacteria.
Khetam lost her sight and became blind.
Everything she has gone through was so hard. A lot of surgeries for her head just to clean the blood and water in her head and the inflammation from outside drains.
They did an MRI on July 21, 2021 and saw that there were no tumors at all in her spine or brain, not even any cancer cells. It was something good for us to hear.
On August 22, 2021, they did another MRI and there were 2 tumors in her brain at 0.5 cm and one tumor in her spine that was also 0.5 cm.
On October 17, 2021, because of her condition, they asked us to try to get a CT first and if they saw nothing then they would do an MRI. But the CT showed that now Khetam’s cancer is spreading fast. They found that the tumors were now 2 cm and that there was a new one also. Now she had 3 tumors at 2 cm. But they didn't do one for her spine. They told us they could already see that it also had spread to her spine. She couldn't move her legs at all now. Now she had hemiplegia, blindness, she couldn’t understand any more at all, she was sleeping all the time with large amounts of narcotics and intravenous fluids.
She has been through so much. It really hurts watching her lose something new every month. I would prefer chemotherapy not be given to children, it has hurt Khetam so much.
She is my only child and my first one. I never thought I would lose her this way someday.
Even now, I still can't believe that this sleeping beauty is Khetam herself.
Still I feel that I will go home and find her waiting there for me.
They told us since October 17, 2021 that Khetam has just weeks or months left to live with us.
Now I pray that she can be cured by a miracle, that maybe she will wake up and ask for me.
But after it all, I know that she is going to a better place waiting for me there. But still I can't imagine my life without her.
May God bless all the children and cure them from this evil illness so they can live their life as they should live.
No pain and no suffering