3 Weeks Have Dragged By and No Appointment

I really do think this has been the longest three weeks of my life - with no end in sight.  Despite repeated calls to McMaster, we still don't have a date for Leah's thyroid Fine Needle Aspiration Biopsy.  It seems there is a back up in Diagnostic Radiology and her appointment will be delayed while they "triage" the wait list.

I want to scream and shout and throw the mother of all tantrums!  "What is there to triage, this is an eight year old little girl!  She needs this done NOW!"
But of course I don't, because my more logical self knows that

• it won't do any good - it might feel good to just let it all out but it won't help
• there are many people on that waiting list with the same feelings I have
• because Thyroid Cancer is as her endocrinologist says "the good cancer" or, "If you're gonna have cancer, this is the one to have!"  And this means they won't triage her as urgently as I want
• the scared mommy side of me really doesn't want to know because then it is real and right now I can still pretend

Right from the start of all of Leah's issues, when I would feel myself sliding into bouts of self pity and "poor Leah", I could give myself a kick in the pants by reminding myself it could be worse, it could be cancer.  When we finally got her MRI back and it didn't show any masses, it was a big PHEW! moment - not cancer.  I have always figured I could handle anything as long as it wasn't cancer.  

Now when I am having a bad day dealing with the doctors or watching Leah have her issues, I automatically start my mantra, "remember, it could be worse it could be cancer....oh wait, it might be!"  Which then starts a whirlwind of thoughts and feelings that just feed off each other.

I need a new mantra.  Something a little more positive.  Today I am drawing a blank, but I am sure it will come to me.  Because really, I have to remember that even it if is cancer, we CAN handle it.  It won't make me throw my hands in the air and give up.  I can't, Leah will need me.

Questions and Answers

In response to the previous post, we were asked some very good questions; it made me realize in hind sight that in my attempt to avoid over dramatizing the situation, I may have in fact mislead everyone as to the serious nature of what we are facing.  I wanted to address those questions.

1. .......You may want to research the side-effects of biopsies before going ahead with one. Did you know that if there are cancerous cells, a biopsy can increase the risk of spreading these cells from this localized area?
2. My mum had been told she had a thyroid nodule and was told to have a biopsy. I cautioned her about it so she only had an ultrasound instead and opted to take natural means and supplements to get her thyroid back to normal - she'd never seen her doctor so upset with her before!   Anyway, about 8 months later, she took another ultrasound test (one of the safer medical tests) and her tests were fine - no thyroid nodules!
3. ....what are the doctors going to suggest as a solution? Surgery and thyroid med's for life? 
4. I just wanted to let you know of other options in case you wanted to investigate them further......

The first question I would like to address is the Fine Needle Biopsy.  Leah will be undergoing an Ultrasound Guided Fine Needle Biopsy.

Fine Needle Aspiration Biopsy (FNA): An introduction

A Fine Needle Aspiration (FNA) Biopsy is a simple procedure that involves passing a thin needle through the skin to sample fluid or tissue from a cyst or solid mass, as can be seen in the picture below. The sample of cellular material taken during an FNA is then sent to a pathology laboratory for analysis. Fine needle aspiration biopsies are often performed when a suspicious lump is found, for example a breast lump or enlarged lymph node, or if an abnormality is detected on an imaging test such as x-ray, ultrasound or mammography. Fine needle aspiration is a relatively non-invasive, less painful and quicker method when compared to other methods of tissue sampling such as surgical biopsy. A cyst aspiration can also be achieved with a FNA, where the fluid is drained from a cyst with no need for analysis........The risks of fine needle aspiration biopsy include the possibility of cancer cells being trailed into unaffected tissue as the needle is removed, but this is rare when the test is performed by skilled practitioners. 

 

Is there a risk of cancerous cells being trailed behind?  Yes there is, but looking at the overall picture, I would rather take that risk than the risk of not finding cancerous cells at all.  Ultrasound alone can not reliably offer a diagnosis of whether a nodule is malignant or not.  Without the FNAB we are putting her at a very great risk.  We can not afford to stick our heads in the sand with this.  As it stands right now, Leah has a 25% chance that the biopsy will reveal cancerous cells.  If you had a 1 in 4 chance of winning the lottery you would buy a ticket right? - you would think the odds are in your favour?

Question #2 - It is a medically accepted fact that thyroid nodules in children represent a higher risk.  Both because they are relatively rare in children and because if they turn out to be malignant, it is very aggressive.

• Thyroid nodules in children present a much higher risk of malignancy that in adults (25% versus 5%) .2  In light of this finding, all thyroid nodules in children must be considered worrisome until proven otherwise using ultrasound (US) and fine needle aspiration biopsy (FNAB).  Nodules bearing low-risk cytology findings need to be closely monitored with interval US to confirm that there is no change in size. 
• http://www.ut-ent.net/2817/management-thyroid-nodules-children/

• Thyroid nodules are uncommon in children before puberty (1.5% or less). Any nodule discovered in such an age group should therefore be viewed with suspicion and the diagnostic approach should be more aggressive in children than in adults because they are more often malignant than in adults. The mean incidence of thyroid carcinomas in childhood thyroid nodules which were operated on is summarized in Table 1⇓ and shows an overall 26.4% risk of cancer.
• http://erc.endocrinology-journals.org/content/13/2/427.full

•  Thyroid cancer is very rare in children, but when it does occur, it can be more  aggressive than it is in adults, often spreading into nearby tissue such as the lymph nodes. The most common type of thyroid cancer in children is papillary cancer.Because the cancer can be more aggressive in kids, treatment must be equally aggressive.
•  http://www.netplaces.com/thyroid-disease/thyroid-disease-and-children/thyroid-cancer-in-kids.htm

Supplements - I spend hours and hours researching a natural approach to helping Leah - as a compliment to the medical interventions, not as a stand alone approach.  I have read books and research papers by so called "experts" and so much is contradictory.  I can do real harm to Leah if I make the wrong decisions on supplements and natural interventions.  Keeping in mind that she is not just dealing with thyroid issues.  She has an ongoing Autoimmune Disease that is affecting many areas in her body and it is a very misunderstood disease and not much is known about it as a whole.  Currently we are modifying her diet, eliminating all soy and goitrogens - 

• Goitrogenic foods: Goitrogenic are foods that can affect thyroid function by inhibiting synthesis of thyroid hormones, resulting in enlargement of the gland (goiter). Goitrogenic foods include Brussel sprouts, kohlrabi, turnips, rutabaga, radishes, cabbage, kale, and cauliflower.

She is taking an excellent quality mulitvitamin, Vitamin C and an excellent quality of Amino 3s for brain health. 

As well, she is set to go see an allergist to rule out food allergies and/or gluten intolerance that may be contributing to the high immune response in her body.

She sees a massage therapist to help with the aches and pains from her body's inflammatory response that is so commonly seen in Autoimmune Disorders.

To assist with her nutritional deficits due to a very poor appetite she chooses one of these each day.  She is 10th percentile for weight and 25th percentile for height - she used to be between the 70 and 85th percentiles for both.

http://abbottnutrition.com/Products/pediasure-sidekicks-clear

Question #3 - Leah is already on a lifelong course of thyroid meds.  Her thyroid has already been damaged beyond repair.  Our goal at this point is to minimize any further damage and to support it with the thyroid meds so it can continue to produce the natural hormones for as long as possible.  The current thinking in the medical field is this is the only way to treat it.  Unfortunately I don't accept this answer and continue to look for ways to minimize the immune reaction and therefore minimize the damage to the thyroid.  There are lots of information out there supporting my thinking and we will continue to research this.

And of course it goes without saying, should the biopsy show cancerous cells there will be a surgery of some sort - whether that means a full thyroidectomy or just removal of the left lobe would be decided if/or when necessary.


Question #4 - We are always looking for and open to options, innovations, solutions....anything!  No decision is made without HOURS and HOURS and HOURS of research, thought, prayer and discussion.  I belong to several forums and groups of parents of children with Hashimoto's and groups for adults with Hashimoto's.  This way I can find out what is being prescribed for other patients, what their medical care plans are, what has worked for them at home, what supplements or alternative therapies they are using and so on.

It's official!

Yes, it is official, Leah does NOT have Narcolepsy. 

Not that any of us are surprised by the news, we (family) never believed she did anyway.  But it is nice to have it verified by the professionals.

We went for the follow up appointment on Wednesday with the Sleep Specialist - very nice man.  Unfortunately we left him scratching his head because he can't figure out what this thing is either!

We go back to see him in three weeks for another follow up.  He has offered us the option of starting Leah on Dexedrine - a half tablet in the morning and if no results add another half at lunch.  The thought process is that it <might> help with her episodes of overwhelming tiredness, as Dexedrine is a stimulant and has proven very beneficial in patients with Narcolepsy.  He is hoping if we could eliminate the symptom of overwhelming tiredness, maybe she would be able to stay at school and not come home so often. We haven't decided yet if we will start her on the meds.  I need to do some more reading and weigh the pros and cons.  I have the prescription if I decide to go ahead with it.  He said if it was going to help we would notice a improvement quickly.  I just need to see if the benefits would outweigh the side effects.

He was also going to do some research into a Functional MRI.  In a nutshell, a regular MRI is to see the structural aspects of the brain, a Functional MRI allows you to see how the blood and enzymes affect the brain.  He needs to do some research because he had a niggling thought in the back of his brain, that there have been some advances/research on the role of a functional MRI and Narcolepsy/Sleep disorders.

As for Leah herself, she has developed a prolonged case of the "blurries"- since an episode on Jan 16th, she has maintained a constant state of her head feeling blurry on the inside.  Back in the spring when this all started, this had happened, and she stayed blurry for a over a month.  Since then, the blurriness had occurred only during an episode and then faded shortly afterwards.

In addition, this past weekend, Leah began having trouble with her right eye.  During an episode, Leah always says her right eye is bothering her, she rubs at it, tries to keep it closed, wipes at it etc.  She can't explain what the issue is, only that it bothers her or feels weird.  On Saturday, I noticed she continually placed her hand over her eye while reading me a story - she couldn't focus on the words unless she closed/blocked her right eye.  This carried over to watching TV as well.  It continued until Sunday when it resolved itself.  We had her checked out by the eye doctor again who says her eye/vision is just fine.

We have reported both issues to the neurologist, but no advice/info for why it is happening has come back to us.

So, while it still isn't an answer, we can check Narcolepsy off the list. 

On a side note...it feels like we have been fighting for answers for SO long, but in reality it has only been 8-9 months.  In that time we have been to see a Paediatric Specialist, a Blood Specialist, a Muscle Specialist, a Neurologist, had a CT Scan, 2 EEGs, a EGG, worn a holter monitor, had a sleep study and a sleep latency study, had a MRI and genetic testing.  Considering wait times in Ontario, she has had incredible access to medical resources!  

I have to remind myself to continue looking on the bright side of things....it could be much worse! 

I received that reminder on Wednesday shortly after our appointment.  We had stopped by Ikea for a quick shopping trip.  Waiting for the elevator, I was grumbling in my mind about the lack of a diagnosis, feeling sorry for myself about all the trips to Hamilton, all the worry and stress, feeling sorry for Leah for all the missed school and activities; the elevator doors opened and I saw a mother pushing her daughter in a wheelchair.  Even though she had a hat on, you could tell the girl was bald, her colouring wasn't good, she had big dark circles under her eyes, she was bundled up to keep warm in the store and had a blanket lying across her lap.  Cancer/leukemia immediately came to mind.  My eyes connected with the mother and we shared a brief smile.  I can not begin to imagine what struggles and heartache she feels;  it certainly put mine into perspective.  Yes it sucks that we are on this quest (it is now a quest in my mind, not a battle, or a struggle or anything else negative), it sucks that it has already impacted us as much as it has, but when I think about how bad it could be, I remember to count my blessings and not borrow trouble.