Thursday, 14 March 2013

Rykauna is headed to surgery...

Rykauna has had more doctor's appointments/tests in the past few months than she has ever had in her life.  When she had a routine physical in the fall her pediatrician had ordered a back x-ray after I mentionned her posture was typical of a growing girl... poor.  Weeks went by and we never got around to finding the time to check whether she had any scoliosis, until I noticed a lump on her throat.

We quickly got her xray done and got an appt with the doc the next day.  Her own pediatrician was super booked up but she was able to be seen by another doc in the office, and an ultrasound was ordered.

A day or so later our pediatrician called.  She said, "I am really confused by the back xray results. She does have very minor scoliosis but that is not the issue.  Does Rykauna have ANY limitations in terms of her mobility?  According to the radiologist's report she has bifid processes on her spine, hypoplastic 12th ribs, and a widened thoracolumbar column."

Stunned, all I said was something like, "Oh. I see."

The pediatrician went on to say, "So we are talking spina bifida."

Woah.  I was not expecting this at all.  SB??  Talk about blow me away.

"I would like to order an MRI to make sure there is not any neurological damage.  If there is, she will be referred to a neurologist," continued the physician.

I hung up and tried to take it in.  See, we did not feel comfortable parenting a spina bifida child so we did not put it on our adoption homestudy and here we have been parenting one for 13 years.  Talk about God having a sense of humour!

So we waited a few weeks, and had the MRI done.  The above picture is of Rykauna dressed in the hospital issued scrubs she was asked to wear for the procedure.  Since she cannot have any metal on you at all when having an MRI, no hair thingy was able to be worn in the pic.

We waited another week and found out the MRI was completely normal.  Great news!  I am not sure about the spine itself...will have to ask next time we are into the office.  What I do know, is that the nervous system is normal.  Thank God.
Meanwhile, the results of the ultrasound came back, and we were told Rykauna likely has a thyroglossal duct cyst or necrosis of a lymph node. Her physician wanted her referred to an ENT specialist as well as she wanted the ultrasound repeated at our local children's hospital.  She mentioned something about having a few misdiagnosed thyroid ultrasounds recently so she wanted the test done by a radiology team she knew and trusted.

The results of the second ultrasound were the same... thyroglossal duct cyst is suspected.  In case you are like me and had no idea what a TDC it is a cyst that develops in a pathway from the tongue base to the thyroid.  The pathway is used in early embryonic development and should not still be open/there.  But this pathway is, and while the thyroid was moving from the tongue base to its present position (8 wk gestation or so) a few cells got left behind and have started to grow a slow-growing cyst.  This cyst will apparently continue to grow, be much harder to remove when bigger, and may interfere with swallowing and/or breathing if not removed. 

Soooo this brings us to Tuesday, March 19th.  Rykauna is going under the knife.  The ENT surgeon thinks there is a small chance it could be a dermoid cyst.  This type of cyst is more easily removable and requires a smaller cut, and no overnight stay.  If it is the suspected TDC, then the cut will be bigger, she will stay overnight in an observation unit with a drain in situ, and have part of her hyoid bone removed.  It is minor surgery but as Rykauna says... "Sure minor surgery, all they are doing is slashing my neck!"

Please pray for Rykauna and for her surgeon.  As you can imagine this is scary for a 13 year old  not too mention the fear of what her neck will look like after this is all over.  Her school friend has unwittingly scared her a bit by saying, "My mom had thyroid cancer a few years ago... I know what I am talking about when I say you will need to wear scarves for a long time to hide the scar." 

We are keeping this in perspective though, Rykauna has seen kiddos with chemo effects, kids with significant deformities, those with severe mental delays, and those with several IV pumps behind their wheelchairs  in our trips to the children's hospital.  Rykauna's condition is truly minor in comparison.  We have a lot to be thankful for... this year is the first year we have ever set foot in the pediatric hospital for care for one of our kids.  Truly blessed.  Not to mention the "lump on her neck" could have been the Big C.  So thankful :)



  1. It was very enlightening to read your so complete report regarding Rykauna's present health issues. I now understand a bit more. Rykauna, as you know, Grand-maman will be praying for you and will be with you in my thoughts and prayers especially on March the 19th. I know you are a brave girl.... and don't forget that God is our great Physician. Looking forward to the end of this as I am sure you are as well. Love you Kiddo.
    Grand-maman xox

  2. wow... a bit un-nerving/scary for everyone, but thankful for the medical care Rykauna has quickly received. Will be praying for her and her surgeon... and for all of you!

  3. Praying for Rykauna's health. I can only imagine how worried she is, and you too, especially when you found out. Thankful for a Father who cares for her.