Svanfrídur Briana Romant
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Svana was born on November 6, 1999 in Corpus Christy TX, she was lbs. 14 oz
and 20 ¾ inches long healthy and beautiful. When she was about 6 months old she
stopped gaining weight and her growth was very slow. I knew then that there was
something wrong and started talking to her Dr. She kept telling me she was
fine and that she was just going to be skinny like her mom! Then she started to
develop a rash on one side of her face when she ate certain baby foods. So
the Dr. thought she had allergies and she sent her to a allergist. She
came out fine, but that Dr. found a lump on the side of her neck and were
worried that it was lymphoma. So she went for a CT and ultrasound but in
the end was diagnosed with cat scratch fever, even though there was no possible
way she could have gotten that from any where. As a result she was on
antibiotics for about 6 weeks and nothing changed.
I kept pressing the Dr. about finding out what was going on, because I knew it
was something else. Finally, on her first birthday she went for a biopsy
and the surgeon was so worried about leaving a scar that he made a tiny little
incision and nothing ever came out of that biopsy, so she still had Cat scratch
fever according to the Dr.
About a month later we moved to Iceland my home country. We spent x-mas with my family and soon after the new year Svana started to vomit a lot. In January I started taking her to the Dr. here in Iceland and on February 5, 2001 she was admitted to the hospital due to failure to thrive. At that point she was 15 months and did not walk or crawl, all she did was sit and all she said was mama.
On the 10 of February she went for another biopsy and due to respiratory distress she required a tracheostomy at this time. We finally got a diagnosis she has Neurofibromatosis 1. She had a large tumor from the base of cranium down to clavicle with extension into the pharynx and hypopharynx.
On February 19, 2001 we were at a hospital in the US where they preformed supraglottoplasty and dissection of the plexiform neurofibroma (tumor) in her neck. After the resection she started to aspirate all swallowed materials, so she got her G-tube. They were not able to remove all of the tumor, so after surgery residual tumor at the skull base and in her pharynx. Now she had two tumors instead of one big one.
We got back to Iceland after spending 10 weeks in the US and she still had to
spend some time in the hospital here due to pneumonia and other complications.
Then she started physical therapy and learned to crawl and walk before we left
the hospital on the 1 of June 2001 she got a speech valve, that was so great we
both cried.
Later on Svana was diagnosed with ADHD and learning disabilities her muscle
strength is very weak despite physical therapy and about two years ago she
stopped being able to use her speech valve :o( She will be 6 years old on
November 6, 2005 and just started 1st grade. The tumors have grown she has
now lost hearing in her left ear and her little voice is fading she learns sign
language for the deaf, so she can better communicate. She is also getting a
wheel chair due to low energy and poor stamina. Also her newest MRI showed
a new tumor in her back on S1, a nerve that goes down her left leg.
We are waiting and hoping that she can have surgery again to debulk some of
the tumor in her neck. The Dr´s here are looking for Dr´s in the US who might be
willing to see if she is a candidate for surgery again.
Despite all her problems and challenges Svana is a happy kid and very giving.
She does not let anything stop her and if she can't do the things other kids are
doing, she finds her own way of doing it. She is a fighter and the light
of our life's.
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I´ll post updates when they arrive.
Hanna Svana's mom
