Not the news we were hoping for

Abby had her first MRI since her radiation treatment and we found out yesterday that the most worrisome cyst has grown back.  This cyst sits close to Abby's fifth nerve which runs out to her left ear.  It is very deep at the bottom of the tumor and they could not remove it during the fist surgery because of this. They were able to pop it and it did not show up in the scans in June so they were hoping that it had been taken care of it . Our neurologist said it is about the same size as it was before surgery.  We were told in Florida that sometimes the cysts grow before the radiation causes them to shrink.  They will do a follow up MRI in 6-8 weeks unless Abby starts to show any adverse effects.  We will be watching for hearing changes, balance issues, facial numbness, and any new pain in or around her left ear or headaches on the left side.  Any of these symptoms will move up the MRI date.  They are booking her for another auditory test because of the growth of the cyst.

The cysts are very unpredictable and can grow very quickly or the radiation can begin to have an effect and the cyst can collapse.  If the cyst grows faster and causes issues before the radiation kills the tumor and cyst then they will have to intervene. There are a few different treatment options but all of them involve a second surgery.  At this point we will be sending her latest scans back to Florida to get their opinion about the cyst growth.

In all other ways Abby is stable.  Her eye sight has not deteriorated and her hormone levels are good with her medication.  She is even still growing...a little bit!  She has started to loose a little weight which is great news.  We have been able to add more carbs back into her diet and every once in a while she even gets a sugary treat!  Yay!  Abby still gets tired easily and needs a nap after school several times a week.  By the end of the week she is usually very tired.

Abby also met with the psych neurologist who will do cognitive testing to see if any cognitive issues were caused by the radiation.  They will do baseline testing in the new year and follow up testing each year.

We had appointments in Edmonton Tuesday, Thursday and Friday so we had a very busy week.  By Saturday Abby was exhausted! 

We are hoping that no issues appear over the next few weeks and in 6-8 weeks the new MRI shows that the radiation has started to work on that stupid cyst!

Comments

  1. Unknown9 December 2017 at 17:32

    Wishing you all the best Abby. Keep on keepin on.

    ReplyDelete
  2. tulipdjc9 December 2017 at 17:38

    You all still have our prayers!!!💚💚💚

    ReplyDelete
  3. Unknown11 December 2017 at 12:05

    Keep on fighting Abby. You are such a special girl.

    ReplyDelete

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