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.

And the waiting begins.....AGAIN

Happy New Year from the Balints!  I hope this finds you and your family in good health and enjoying the return to school, work and normalcy.

The holiday season was busy and hectic and like so many other families was full of sickness.  That terrible flu/virus/cold thing that everyone you talk to had, hit our house as well.  Each of the kids had it to some degree, as did Paul and I.  Leah was one of the last ones to show the actual symptoms of the "flu" but she suffered from the side effects of her body trying to fight it off for days ahead of time.  On Boxing Day she was reduced to crawling or being carried - she had such terrible vertigo that she couldn't stand.  She had her usual hallmarks of an "episode"; blurry feeling in her head, right eye feeling funny, extremely cold, tired, weak, falling, dropping things and frequent sleep disturbances.  She missed out on fun activities with her siblings and her best friend.  

Her return to school has been pretty good so far, although on Tuesday there were tears, she didn't feel well, was tired and wanted to stay home.  Again we had to encourage her to push through it and hope that it would get better.

On Wednesday we returned to McMaster for another appointment with the Endocrinologist.  When we last saw him, he ordered an ultrasound on her thyroid because he could feel a nodule.  He also stated that any further follow up could be handled by her family doctor and he didn't need to see Leah any further.  Imagine my surprise when the office called to book the appointment!  We had already received the ultrasound report from Leah's family doctor and he had made it sound as if everything was normal.  

Realizing that everything was not normal, I began to do more research.  

By the time the appointment came, Paul and I had already reached a decision on the course of action we wanted the Doctor to take and I showed up for the appointment armed with documentation supporting our decision, prepared to duke it out with them.

What are thyroid nodules?
Thyroid nodules are growths in the thyroid gland, which is located in the front of the neck and controls many critical functions. Most nodules are benign tissue, but some can be malignant, or cancerous. Thyroid nodules are rare during childhood and adolescence, but they can and do occur. There are several types of nodules: Colloid nodule, a benign accumulation of thyroid cells forming one or more nodules on the thyroid gland; follicular adenoma (benign); thyroid cysts (usually benign), small sacs filled with fluid and sometimes with solid parts; Inflammatory nodules, formed as a result of chronic inflammation of the gland; thyroid cancer (typically hard nodules). Some nodules may affect the hormones produced by the thyroid gland, causing symptoms of hypothyroidism (under-active thyroid gland) or hyperthyroidism (over-active gland).

http://www.hopkinschildrens.org/thyroid-nodules.aspx

As it turns out, Leah has a pancake shaped nodule in the left lobe of her thyroid that has partial cystic qualities.  The nodule is over 11 mms at it widest section.  It is common practice that once a nodule is bigger than 10 mm, a Fine Needle Aspiration Biopsy (FNAB) is recommended.    

So before I even had a chance to put on my big girl panties and spout research stats, the doctor took the wind out of my sails by advising we proceed with the FNAB.

Fine Needle Aspiration Biopsy (FNAB)

Once the patient is ready, a small, fine-gauge needle is inserted into the nodule. The needle is smaller in diameter than the needle used in most blood draws (usually a 25 gauge 1.5 inch needle). The patient holds his breath while the needle is rocked gently to obtain as much tissue as possible. (The reason for holding the breath is to minimize movement of the structures in the neck.) The needle is then withdrawn and pressure is applied over the thyroid area to minimize bleeding. This procedure is usually repeated four to six times to ensure that an adequate amount of tissue has been collected. After the procedure, pressure is applied over the neck area for 5 to 10 minutes to assure that the bleeding has stopped. The pressure also helps to reduce any swelling that may occur. The entire procedure usually takes less than 20 minutes.

http://www.medicinenet.com/fine-needle_aspiration_biopsy_of_the_thyroid/page2.htm

The doctor expects the FNAB to be scheduled within a month (I’ll believe it when it happens!) with the potential of a “pre-op” appointment due to her young age and the possible need of sedation.

He threw a lot of stats and numbers at me, most of which I was already familiar with. 

Here is the Coles Notes version:  

• Nodules are uncommon in children, however they are upto 4x more likely to be malignant than in adults.  
• It is estimated between 15 and 25% of nodules in children are cancerous.  
• He was also very quick to point out that means there is a 75-85% chance that her nodule is not.

So we now begin a very LOOOOOONG couple of months of waiting and trying not to worry.

As always prayers are requested and very welcome!

Merry Christmas!

From our family to all of you

As with most other families, things have been crazy and hectic at the Balint residence.

Between school events, Christmas parties and just the pure and simple excitement of Christmas, we are finally enjoying some relaxation!  The kids are on their second pajama day in a row and I have no intention of changing that.  :)

But as always, when the schedule gets too out of whack, and the excitement level too high, Leah suffers.  I had hoped that the pj days would help, but I think it was too little too late.  Today the poor thing is crawling throughout the house because her heads hurts so much and she is so dizzy she can't walk.  She was also up throughout the night and in bed with me but very restless.  She has finally succumbed to the cold that the other kids had, so that is making matters worse.  Her little system is completely confused right now.

The girls also reminded me that I hadn't given an update on Ronald McDonald House yet.  So here goes...

We collected enough items to put together

• 30 toiletry bags for the parents.  Inside each were a toothbrush, toothpaste, deodorant, shampoo, conditioner and a little baggie of Hersey's Kisses.  These went to Ronald McDonald House (RMH)
• 10 bags of just deodorant, toothbrush and toothpaste for the Ronald McDonald Family Room (RMFR)at McMaster
• a large gift bag filled with toothbrushes and toothpaste for both sites
• paper goods (plates, cups, napkins), cereal, snacks, hot chocolate, suckers, juice boxes, crackers for the RMFR
• paper goods (plates, cups, napkins) cereal, snacks, pasta, sauce, cake mixes, icing, canned veggies, soups, crackers, suckers, hot chocolate, etc for RMH

The girls were so pleased with their efforts, they decorated the bags and boxes and picked a nice big totebag to carry it all in.  We attached these little cards to each of the bags.

And here are the girls dropping off the donations to RMH and the RMFR at McMaster.  They received such overwhelming thanks from the volunteers that they are already thinking of ways to do it again!

Again, to everyone that helped us accumulate the items for this donation, thank you from us and from the staff and volunteers at Ronald McDonald House - it was all very much appreciated!

A Princess and her Castle

After a busy and very exciting weekend, followed by a busy and exciting Monday, Leah is having a TERRIBLE Tuesday! Seizures, sleep disturbances, blurry vision, headache, weepy, tired, cold. She is obviously staying home from school. She had been doing so well too.

At least she was interested in learning more about what is going on with her. I gave her this analogy.

She needs to think of her body like a castle that is under attack(germs, viruses, etc) all the time. Inside the castle there are defenders(anti bodies) who run around defending against the attackers. Sometimes the walls of the castle are weakened by mysterious forces (sickness, stress, overtiredness etc) High in the tower(brain) is the princess. She has special protectors(Keppra). Sometimes the defenders are so eager to do a good job defending the castle that they get confused and start attacking the things that live in the castle too. When this happens the princess's special protectors help to keep her safe but sometimes, the confused defenders fight them as well. And as skirmishes breakout thoughout the tower different things(symptoms) happen.

This started a long conversation but she finally seems to "get it". Of course by this afternoon she may not remember we even had the conversation! But at least I will be able to refer back to it :)

November's Update

After a couple of weeks full of doctor's appointments and trips to McMaster, I finally felt prepared to give a long comprehensive update on Leah.

INFORMATION IS POWER
As I think I have mentioned before I feel most in control of all of this when I am well informed.  I have been very heavy into research and networking with other patients and parents of pediatric patients with similar issues as Leah. There is so much information and data gathering that has to be done and kept up to date for each of her doctors.  I feel like I have turned into a fact-spouting documentation obsessed lunatic!

As a coping measure I have developed a large binder full of information on a variety of subjects relating to her issues as well as keeping copies of her medical history, bloodwork and diagnostic results and an ongoing list of questions.  The binder I use is similar to the one below.  It even has a shoulder carrying strap!  At Leah's last appointment I had it on the chair beside me open to a few articles that were heavily underlined with points I wanted to address.  When the doctor walked into the room I actually saw his shoulders slump!  Poor guy knew it wasn't going to be a quick easy appointment!

I have also created a document chronicling all of her bloodwork.  As I explained to one specialist when he wondered why I would do such a thing....I need all the doctors Leah sees to be able to take a look at the bigger picture.  They need to be able to see more than just the results of the tests THEY order.  Maybe if they had access to a document like this previously, so much time wouldn't have been wasted.  With this chart they can see at a glance how she is trending and draw conclusions from that.  For example, if her esoinophils and her IGE are consistently elevated (which they are - minimally) that indicates that there is an allergic response to something going on.  Now that triggers an investigation into what she is allergic to.  Eliminating any reason to rev up her immune response is our goal right now since it is already in a state of hyper-vigilance.

As well, everyone can see (especially me) what needs to be monitored and ensure that those problem results are routinely rechecked.   

Taking a step back and looking at how we were handling things at home and at doctor's appointments I realized that everything was happening TO Leah.  But she really wasn't an active participant and amazingly she didn't really have a good grasp on what was actually going on with her!  That one really shocked me!  How could she not know??  But then I gave my head a shake and realized she is only 8 and I can't just assume she would understand all of this.  I guess that it is a testament to how much she trusts us that she hasn't really questioned any of it.

As such, we have been encouraging her to take a larger role in her care.  I am encouraging her to be a more active participant in her appointments, to speak for herself instead of just pointing at me to provide the answers.  She fills out a daily chart outlining how she feels, what her symptoms were that day, rates her day based on a smiley face scale and even gives me a brief description on the back if something abnormal occurs.

SCHOOL
On the school front she has been doing very well.  Still missing a larger number of days due to either illness or doctor's appointments than I would like, but she is managing.  Her teacher says that she very smart and can pick up new concepts very quickly which is what is allowing her to catch up on missed school work.  Without that ability, she would be very behind.  However she is very very VERY disorganized.  She does well within the structure of the classroom where there are clear rules and schedule.  But give her any sort of freedom and she can't function.  She easily becomes overwhelmed and at times reduced to tears.  I am currently struggling with how to help her with that.  Her agenda doesn't really do it for her and I don't want to overload her with charts and check lists.  Anybody have advice?

MEDICAL
Recently Leah was seen by her new family doctor, a Neurologist and an Endocrinologist.  The outcome of all of that has been a couple of referrals to other hospitals.  In the coming months she will be seen at both Toronto Sick Kids and London Sick Kids.  She has a follow up MRI before the end of this month and an Ultrasound of her thyroid pending.  We will be gradually increasing her dosage of Kepra as she is still having frequent events (as the doctors call them) and her dosage was still at the "sub therapeutic level".

At the endocrinology appointment the doctor felt nodules in her thyroid and wants to do the ultrasound to investigate those as well as create a baseline to track any changes.

There is still some question in the minds of those doctors if the diagnosis given a Mayo Clinic is correct.  I am finding this increasingly frustrating.  I can't decide if it is ego, pride or just spitefulness that is causing their hesitancy or if there is a true doubt.   At least the psych consult is off the table now!

With regard to how she is feeling, Leah still is troubled by sleep disturbances which may or may not be seizure related.  She is frequently up during the night but doesn't remember much of what has gone on.  She comes to us seeking comfort which means none of us are feeling rested!  :)

Her mornings are still difficult and we have to be very firm with her and harden our hearts to some tears.  Not everyday thank goodness, but at least a couple times a week.

During the day she is still dealing with her sudden falls and dropping things.  Unfortunately this means her time on the monkey bars has had to be curtailed as whenever one of the Negative Myoclonic Seizures occurred, it caused her hands or legs to release and she was falling on her head!  She is still having her rest period at lunch time which I firmly believe is the reason she is able to stay at school most days.

In the midst of all of this, we have had a great month as a family.  Halloween was fun despite the rain and the kids are really looking forward to our annual trip to Great Wolf Lodge tomorrow!

I did however forget to pack the donations for Ronald McDonald House and Ronald McDonald Family Room into the van on our last trip to Hamilton, so for those of you who had sample sized toiletry items to donate but hadn't got them to me yet THERE IS STILL TIME!  :)  For those of you who have already gotten them to me or promised to do so THANKS SO MUCH!    I know they will be greatly appreciated by the families that will use them.

Small Update

Leah has been doing quite well at school and she has only missed a few days!  Granted, she has many mornings where she isn't feeling well and would really prefer to stay home, but we are strongly encouraging her to go and give it a try.  Always with the understanding that if she can't handle it she can come home.  So far so good!  Her teacher sends home notes full of positive reports too!

Her last round of bloodwork and a look at her behaviour patterns showed that we needed to increase her medications. She now takes a larger dose of her anti-seizure medication in the evening.  Hopefully this will help with the night time seizures she is having that are causing her so many sleep disturbances.

As well, we have just upped her thyroid medication as the blood work showed her thyroid was still having to work too hard.

We have made contact with Epilepsy Niagara and joined both the parent and child support groups.  I think this will be helpful for all of us.  We went to our first set of meetings on the weekend and have already learned so much!

Leah is having regular appointments with a massage therapist to help with her muscle and joint pain, and it seems to be helping an awful lot.

She has appointments with Neurology and Endocrinology over the next couple of weeks and this will complete the passover of information between the Mayo Clinic doctors and her medical team here.

We have an MRI booked for January to see how/if the disease has progressed there.

All in all, I feel Leah is in pretty good shape.  Things aren't perfect, she still has episodes, symptoms and seizures, but it is much better than it was!

Leah and her sisters are busy planning Christmas treat bags for the families that will be staying at the Hamiliton Ronald McDonald House over the holidays.

They are also helping me organize another donation to take to them when we have to go to McMaster next week.  We are collecting sample sized toiletries, toothbrushes and toothpaste.  They are in particular need of  toothbrushes and toothpaste.  So if you are like me and have a drawer filled with unopened samples that you will never use, just let us know and we will arrange to pick them up!