Posted: January 25, 2017
3 Years Old at Diagnosis.
December 15, 2014 was a regular Monday. Khloë was at her 3-year checkup, as she just had her birthday on December 2nd. Dr. Goldberg was in the middle of her physical exam when he started to palpate her abdomen. He hovered for a bit, all the while holding a conversation with me. He checked both sides but concentrated mainly on her left side. He then advised me calmly that he would like for Khloë to have an ultrasound, just to check her stomach (while also trying to keep me calm). He said today would be best, and he would call ahead to Baptist Children’s Hospital to advise them off my arrival.
Within ten minutes of my arrival, the doctor on staff arrived in the room to palpate Khloë’s abdomen, and she had me do the same. Sure enough, I felt a large bulge on what would be her left kidney. She advised me Khloë would be having an abdominal ultrasound.
After her ultrasound, the results came back rather quickly, Khloë was diagnosed with bilateral Wilms tumor, the only cancer to have five stages. And here she was at stage 5. Wilms tumor generally has a very good prognosis, but because she had it bilaterally, it was a bit more challenging.
By Thursday she had her port and by Friday, December 18, she started chemo. I always consider ourselves blessed because aside from hand and foot pain (which started during the very first chemo) and the fact that it be a bit heartbreaking as you see your child go through it, we really did have minimal side effects with the chemo.
Khloë lost her appetite and subsequently, quite a bit of weight. She had hand and foot pain and at times, a sudden feeling of coldness in them. Her nail beds turned brown and she developed droopy eyelids for about five months. She also had a round of chemo, then her bilateral open biopsy in February, giving the tumors a chance to shrink to minimize spillage. The biopsies confirmed the tumors were Wilms. She had another round of chemo and her surgery was scheduled for April 1, 2015, where she was scheduled to have a total left nephrectomy with partial right nephrectomy.
The day of the surgery her surgeon advised us that two new embryonic cells were present on her latest scan of the right kidney. They prepared us for all possibilities, from a smooth surgery to the possibility of another transfusion, to short or long-term dialysis. Everything did go well, and no dialysis was needed. Khloë walked out of the hospital Sunday April 5th, 2015.
They were not able to remove any part of Khloë’s right kidney due to how much of the kidney the tumors encompassed. They were on the front and went up the back of the right kidney. At that point Dr. Hogan advised us of the possibility of having to put Khloë on a donor list. He and Dr. Daghistani then contacted COG (Children’s Cancer Group) for a new treatment map. All the while, the biopsies that Dr. Hogan took of the tumor on the right kidney were sent off to Baptist’s lab. Khloë started her third round of chemo and had radiation this time as well.
This was probably the hardest time, which was still probably better that some families go through. She lost a bit more weight and had terrible nausea. She threw up a few times and ended up with a double ear infection that brought her counts down quite a bit. That was her only unscheduled admittance to the hospital, and luckily it was only a couple of days.
Khloë’s last chemo was on July 6, 2015. Dr. Daghistani advised us that the tumors on her right kidney were necrotic Wilms tumors in addition to nephrogenic rests, an aggressive but benign form of tumors. Her port was removed January 2016 and she went back to pre-school in March of 2016, where she was sorely missed.
Khloë is in Pre-K now, where she is beginning to read, and she’s a happy, very active 5-year-old girl. She has her follow-ups every six months with her nephrologist and Dr. Daghistani as well, who has advised us that due to the nephrogenic rests, Khloë does have to likely follow-up beyond the 10 years to 15 years. My husband and are I just fine with that!
I support CureSearch because it puts into perspective what and who the true superheroes are. It allows the community to recognize and celebrate our beautiful children and the fight the give for survival. CureSearch’s mission and passion to find a cure for childhood cancer is the main reason they have taken my top donation spot and hold a dear place in my heart. I believe their commitment and conviction. I have always given to causes for children, but when I heard the pitiful disgraceful percentage (4%) that the NCI allots to childhood cancer, and found out the ridiculous gap between it and AIDS and breast cancer research, I was seething. CureSearch is a great source to use for information, fundraising and donating.
Written by Trudi Kroger, Khloë’s mother
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