A Little Update

Thank you for all your kind words about Victoria.  It’s meant a lot to our family.

I thought I’d post a little update on how she’s doing but I’m not sure I ever posted much information to begin with so here’s a super short recap:

Victoria had surgery on May 2nd to remove a lump that had been below her ear for over a year.  A doctor and specialist had told us that it was “nothing” but we finally pushed for it to be removed and another doctor agreed it was best since it was growing larger.  The surgery was a parotidectomy, since the lump was sitting on top of her parotid (salivary) gland. 

She had a difficult recovery, with a lot of pain and pretty severe swelling on the side of her face.  At her two week recheck, the doctor informed us that a biopsy had revealed a rare type of cancer of the parotid gland instead of the benign cyst he was expecting.  He said he was optimistic that it had all been removed, though. 

Last week, we went to an oncologist who specializes in cancers of the ear, nose and throat who told us that the surgeon had removed the cyst in a way that was dangerous since he hadn’t known it was cancerous (basically, you want to take extra all around and “ink” it to help determine if there is more anywhere and be sure you got it all).  She also palpitated the site to see how Victoria was healing. 

Within about an hour of the appointment, Victoria was in a lot of pain and by that evening she was in excruciating pain, sobbing and shaking with a high fever.  We rushed her to the emergency room, where they gave her large doses of pain medicines and IV fluids to no relief.  She spent the night in the hospital and in the morning we rushed her back to Sioux Falls to the oncologist’s office.  Victoria’s oncologist was now in Aruba, so another specialist saw her and immediately admitted her to the pediatric ward of the local hospital.  She had a severe infection where she’d had the surgery (it’s likely the infected area burst and spread during the palpitations the day before).  They did emergency surgery that night to deal with the infection, and she was released from the hospital on Sunday.

The good news is that she’s healing very well from this surgery and she’s in much less pain.  She had her stitches removed yesterday and the surgeon told us he looked at the pathology report from the initial surgery and the cancer does seem to have been removed well (there were clear margins all around, meaning that the extra that they want was there).  She will have a special type of CT scan in three months to look for more cancer.

Victoria is still on antibiotics and pain medication, but she’s getting back to her usual self.  She’s pretty weak and things like chewing still cause her pain, but her spirits are much better.

(If you’d like to send her a card or pick-me-up, you can at:  Victoria Bayer, PO Box 304, Westbrook MN 56183)

The cancer is a very rare type and it tends to be very slow growing, which is good news.  Victoria’s surgeon has another young patient who had the same type of parotid cancer and has been doing well for two years.  We’re optimistic right now about the cancer, the surgery, the infection and her medical team.

Meanwhile, every other member of our family has been sick this month too.  We’ve had coughs, colds, flus, an eye infection, a respiratory infection, fevers, stomach pains, allergies, sore throats, headaches, lost voices and general exhaustion.  We all finally seem to be getting better now that the worst of the crises are over.  We have high hopes for June!

I’ll be back soon.  Thanks again for all your sweet comments, thoughts, prayers, letters and words of support.  :)

~Alicia

 

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9 Comments

Filed under the big stuff

9 responses to “A Little Update

  1. I’m glad she’s on the mend and the news was as good as possible. Healing thoughts to you and yours.

  2. Peace be with your entire family.

  3. I’ll be praying for your family. My son (now 3 1/2) has had 8 surgeries in his short little life…some emergency surgeries, some planned. So…I know some of the emotions you are feeling. Glad things seem to be looking up. I LOVE your blog…it reminds me to have FUN with my children.

  4. Liz

    I’m sitting here on the other side of the world with tears in my eyes feeling your anguish. Thanks for making my problems seem minor in comparison. Sending you lots of love and happiness.

  5. nina

    thankyou for sharing your news- love and strength to you all – x

  6. Nancy

    wishing you all, especially your daughter peace and healing!!!

  7. Sending well wishes to Victoria.Parotid cancer is nasty, my mother had surgery for it about 2 years ago now and still sees the oncologist every 3 months to keep an eye on it, she is also some paralasis as they cut the nerve in the side of the face, but its getting better and better as we go on. Its really not good that the DR misses the infection in her, surely there was some sign, but lucky you guys got her into hospital in time to get something done. Hugs to all…we will be sending you guys a get well card on thursday.not sure how long it will take to get there from Australia but hopefully in a week or two.Hugs to everyone.

  8. linda robert

    wishing you and your family the best. i hope that everything will be good. greetings from belgium, linda

  9. Oh my! I have no idea why I wanted to look up your blog again, I haven’t visited in years, but for some reason I was wondering how you were. I’m so sorry to hear Victoria has gone through all this. I hope everything will have a happy ending. And many congratulations on Fiona! I still pass on your post ‘What Every 4 year old needs to know.”–it still is the best bit of advice I pass on to every new parent!

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