When Amber was around 5 yr old in 2004 she started loosing weight. She would sweating a lot, she would get sick and vomit. We took her to the Dr. several times but of course they found nothing. She spent the summer of 07 with me in Fl. She would get sick and in 5 min be running around and be fine. I thought maybe it was the heat. When she returned to Vt.(where she was living at the time) she was still sweating a lot and from Aug to Nov she had lost 15-20 lb. When she finally saw the Pediatrician she sent Amber to the Hospital the next day to have test and scans done. When they done the CT scan they found a tumor between her shoulder blades it was (almost the size of a football) 6.3X4.7X3.3 cm mass in the region T6-T10 with extensions in the leftT8-T9 vertebral. The Endocrinologist at Fletcher Allen Health Care in Burlington Vt. realized that it was a rare type of Cancer called Paraganglioma. Since it is such a rare cancer little is know and NOT a lot of Dr know how to treat it. We found out that NIH in Bethesda, Md. Done research on this cancer, they accepted her as a patient in Jan 08. We also learned that this cancer is usually genetic, Amber was tested and found to have the SDHB genetic gene which she inherited from her father who also has the gene. James (her dad) was also tested and had the same SDHB gene, In Dec 2008 her dad had a tumor removed from his corroded artery. Amber was fine till Dec 08 and when tested at NIH her lymph nodes in her abdomen were swollen, her B/P was going up & her pulse was often high. We returned to NIH on Mar 2009 After lots of tests they found that Amber had 15 small tumors all through her abdomen. In April of 09 we went us up to CHOP in Pa. to have a MIBG 131 treatment (radioactive iodine put directly in the blood). In the weeks following the treatment her BP went back to normal and the tiredness and sweating stopped. In July 09 we returned to NIH the scans showed that the tumors had stopped growing and appeared to be dead. Amber done fine for a couple of years. In June of 2011 they found 7 lesions in the bones. She had 2 in her spine at T8, T9, and the rib at T9, T7 she also had one in the rip on her chest one in shoulder and one in hip. They didn't seam to bother her till Nov when she started to have BP problems again. At NIH they found the tumors have not grown but were very active. We returned to NIH again in April 2012 because of her BP Amber had a few new tumors in the abdomen. They decided because of the location of the tumors/lesions it was time to have another MIBG 131 treatment. We went to Sloan-Kettering, Manhattan, NY. We were there from the middle of May till the end of June. Before the treatment they done a stem cell harvest for future use as there are no studies of side affects of this MIBG 131 treatment. We were there for almost 5 weeks and had the first MIBG 131 treatment of radioactive liquid done in June 2012. We returned to NIH & NYC the end of Aug 2012 and she was scanned and they found the treatment seamed to be working. We went back to NIH & NYC the first of Oct and she had another treatment. She seamed to be doing ok and the tumors/lesions seamed to be responding as her BP was going back to normal. She had gone from taking 7 pills a day down to 3 pill a day. She got sick when we got home from the treatment in Oct she got pneumonia and spent a week in the hospital. In Jan 2013 we returned to NIH & NYC and she had another treatment it was really hard on her. She was really sick and lost 13 lb in 10 days. She spent almost 2 weeks after the treatment in the hospital before she was released. At this time they decided to wait about 6 mo and see how she done before they would do any more treatments. She was fine on NO medication for 6 months, the first of June her BP started going up again. We returned to NYC July 2013 they done scans from head to toe. They decided since her tumors had all shrank and 2 of them were almost gone they are going to wait before doing another treatment as this treatment is not FDA approved and there are no studies of the side affects especially on children. We returned to NIH & NYC in Nov 2013 and things still looked the same. We returned to NIH the last week of March & to NYC the first week of April 2014. The tumors in the soft tissue of the abdomen had almost disappeared and the lesions in the bones seamed to also be shrinking exceptions of the one at T8 has actually grown some. Her BP has stayed normal since her last treatment and she is taking only 1 pill. She will be returning to NIH & NYC for check ups and possible treatments some time in the fall of 2014.
Amber had all her tests done and all the numbers for her cancer were negative. So happy, we did not go to NIH Bethesda Md with Covid they are not seeing people. So she will probably go next yr. Hope 2021 is a better yr for everyone and stay safe Alice
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