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Hello, My name is Allyson. I have a germ cell tumor, specifically a yolk sac tumor. The doctor also said I am the only one in the country at this time to have this type of cancer in that location that he knows of! It is located behind my nose.

Hello, My name is Allyson. I have a germ cell tumor, specifically a yolk sac tumor. The most famous person that has had this type of cancer is Lance Armstrong. The doctor said I am special because the tumor is located behind my nose. The doctor also said I am the only one in the country at this time to have this type of cancer in that location that he knows of!

Where to start....Ally had started with a cold about a week before her birthday on January 9, 2010. She had a runny nose, no appetite and not sleeping well. At her two year check up with her primary pediatrician on January 12, 2010 she had an ear infection in her right ear and she also discovered what they thought was a cyst on the roof of Ally's mouth on the left side towards the back. Ally was prescribed a medication for the ear infection and the pediatrician contacted ENT regarding the cyst. We saw ENT on January 14, 2010 who stated that he was not concerned about the cyst. He said it was a mucus cyst and when Ally was feeling better in about 4 to 6 weeks we could come back and he could remove the cyst. Ally continued to be lethargic, no appetite and not sleeping. We took her back to the doctor on the 18th. We saw another doctor who looked and stated that he ear was still infected and prescribed Zithromax. He also saw the cyst and did not feel that had anything to do with Ally's illness. We back to doctor on January 25th as Ally continued not to eat, not sleeping well and very low energy. That doctor prescribed Bactrim for 14 days. Again, not concerned with the cyst. After about 5 days on the Bactrim Ally would vomit after receiving the medication. We returned to the doctor on February 1, 2010 and saw our fifth doctor. He stated that he ear was not infected anymore so no need for antibiotics and not concerned about the cyst. Went back to Ally's primary pediatrician on February 4th as continued not to eat, not sleeping and no energy. Ally had X-ray of her chest and neck which came out good. She also had blood work completed and that was normal. The doctor was a little concerned about Ally's breathing and stated if it changed to bring her back in ASAP. We really did not notice a changed but we took her back in on February 10th to a nurse practitioner. This is when I finally broke down, we knew that there was something wrong and not just an ear infection or a virus. She had continued to lose weight and was at 21 pounds, not sleeping and no energy. During the examination, she was concerned with the cyst as it appeared that it was blocking Ally's air way and that is why she was having problems breathing. She transferred us to Children's Hospital in Minneapolis. Ally had to be transported by ambulance to Children's. I was able to ride with her and Chris followed right behind us and we now begin the journey of our life!
 

We arrived by ambulance to Children's Hospital in Minneapolis and admitted into the ER. We were greeted by many differnet doctors who were all concerned about Ally's air way. They contacted on-call ENT (ear, nose & throat specialist) who did not feel the breathing was an emergency situation as she was able to breath by herself. They stated that they would follow up with us in the morning. We stayed in the ER for about 5 hours waiting for them to find a room that was available. We then went to short stay for the night.

We woke up today with a team of three ENT doctors starting to evaluate Ally. They were concerned with the mass in the back of her mouth and decided to call Oncology to assist and consult during the surgery that was scheduled for later that afternoon. The Oncologist came in before pre-op and and informed us that he was just there assisting and would know more after the biopsy of the mass.

Surgery was scheduled for 11:30 AM. Ally went into surgery for a biopsy of the mass, full body CT scan, nasal endoscopy (tub down the canal which connects the nose and throat), suctioned secretions from her nose and ear tubes in both ears.

We were in the family waiting surgery area when the Oncology doctor came in and gave us the worst news of our life! He stated it he thought it was a tumor and that we would be looking at chemo and radiation almost immediately.

The Gustafson's(Chris, Ann, Emma, and Ally)

 

If you would rather donate to the family directly, you can send to:

Jeremy Ostendorf
14902 Sumter Ave
Savage MN 55378

 

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