Thursday, June 27, 2013

Roller coaster

UGH.  This stupid eye surgery that was supposed to be nothing has been causing so much trouble!  When the doctor's office called to reschedule I okay'd the August 15th date I was given.  I think I was just willing to accept whatever to get the stupid thing scheduled.

Well, when I let my mother in law know about the date change she reminded me that my sister in law is getting married that weekend!  How the heck did I forget about that?!  Liam is the ring bearer and I've been so excited about it.

I called the doctor's office this morning to reschedule and they said they'd be right back with me.  Well, 3 hours later they call to give me a new appointment.... sometime in September.   Normally, I'm pretty much a push over.  I hate to stir the waters, but I was just frustrated!  I said that I'd already had a second opinion done by another doctor so I would just take Liam there instead.

Apparently, that's all it takes.  The lady on the phone spoke with the doctor and low and behold, Liam's surgery is back to July 11th, the original date.  They said they had to "squeeze" us in.  Now tell me, how do we have to be "squeezed in" on a date that we already were scheduled for?

I'm typically on the other end of the doctor (PA)/ patient roll, but I can now see where people get so frustrated!   So hopefully that's the end of this hiccup and we can move forward to the looming MRI follow up.

And- If anything, this experience is helping me do my job with more understanding and patience.  There's always a silver lining.

Tuesday, June 25, 2013

Go figure...

Just when I had adjusted to the idea of Liam getting his surgery and I was getting excited about getting one thing ticked off our list to do before the next MRI, they call to reschedule.  They called at 5:30 tonight on my way home from work.  I guess I jinxed myself.  UGH.

Anway, they wanted to reschedule the surgery the day before Liam's birthday.  I said no.  He's supposed to be calm and quiet and we've got a party planned!  Blah.  So now I'm having to wait until they can figure out another date.  Hopefully it will be before July 11th but I'm sure it'll be put off for another month.  gah.  

I'm so freaking frustrated.  For reading this- here's your reward!  Christmas in June.  He actually picked out the hat and put it on so, I let him wear it.

The countdown begins...eye surgery

Liam's eye surgery is just a few weeks away.  July 11th.  It's funny to me now that this eye surgery was such a source of angst when it was first decided it was needed.

Oh, I cried.  I relived my pregnancy trying to decide if I could have done anything to cause his eye problems.  I got a second opinion as to whether the surgery was really needed.  I was so scared.

Now?  Pssh.  It's a 40 minute long "simple" procedure.  Liam will be fine. Don't get me wrong, I still hate the thought of causing him pain, but his eyes will be better in a matter of a few days and we will go on.  There's so much more to do than worry constantly about something like this.

He will be one in one month (plus a day). I can't believe how big he's getting. We've been swimming and going to the park.  We've been living life and being us.   He's still just a "normal" little boy; he just gets a little extra prayer time.

Friday, June 14, 2013


I'm having a bad day today.  I talked with a lady yesterday for nearly an hour who'd lost her son tragically.  I could see the hurt in her eyes.  I could see and feel the emptiness that was there.  I did my best to listen to her story and not cry.  I did my best to be empathetic/sympathetic.
And I hate to say this, and I feel so bad even that I thought this-  but while she was talking I couldn't help but think I didn't want to be her.  I didn't want to feel that pain.  I don't want to lose my child like she lost hers.  I was glad it was her at that moment and not me.  Terrible, I know.  I feel horrible about those thoughts.

Then she said "It's not like my son had cancer and I could see it coming.  He was healthy."-- ouch.  I did my best not to react to her statement,  but it got me thinking--- Does it matter that you know your kid is sick?  Losing a child is losing a child.  I don't think it hurts any less if you "can see it coming".  Right?

Anyway, I'd been doing pretty well since getting back from Houston.  I hadn't cried myself to sleep in a few days but last night I back slid a little. I cried for a while.  I'm getting pretty good at silently crying so I don't disturb my husband.  I had to go to the bathroom and cry this morning at work.

My mood is low. I am sad.  Sorry to be such a bummer.


Thursday, June 13, 2013

Ophthalmology follow up

I'm a little late with this follow up but we went to see the ophthalmologist again because people kept telling me Liam's eyes have seemingly improved.  (I thought so too!)
 Buuuuuut- apparently we're all wrong.  The doc remeasured and came up with the same thing.

Surgery is still scheduled for July 11th.  Not sure how I feel about this.  I do kinda wish this was my top priority and my top worry. However, a 40 minute eye surgery really doesn't seem like much now.

That's all for tonight.

Monday, June 10, 2013

MD Anderson and Texas Children's Appointments

I'm writing this half paying attention/ half with a melted brain so please forgive grammar/spelling mistakes.

LONG STORY:  (scroll down if you want to just read about the results)
What a day.  We were told we had an appointment at 9:50 at Texas Children's.  We were also told we had our first MD Anderson appointment at 11:00.  I thought we may be pushing it a LITTLE, but boy was I wrong.

The day prior I had received an email saying we needed to "register" at MD Anderson at 9:30.  We arrived in the hospital district around 8:30 and figured we'd be proactive.  We thought we could "register" early (thinking this was just paperwork) but, apparently when you start the registration process it means you're ready to be seen.
So we screwed that up right off the bat and had to leave and left the poor lady in registration with the troubling of calling and canceling our status.
Off walking to Children's for our first appointment. (We were told it was "right across the street" but it was a good 10 minute super fast walk).  We got there at 9:20 for our "9:50" appointment since I always am a little early.  Well apparently- it's a 9:50 CHECK IN with a 10:10 appointment.  UGH.  And.... Cue panic.  How are we supposed to get from Children's to MD Anderson by 11:00??

We weren't even called back until 10:40. I was freaking out but  we were sure we kept the patient relations lady at MD Anderson updated and the AMAZING MD Anderson neuro-oncologist told us just to show up when we were done!  What specialist does that!?

We made it to MD Anderson around 11:50 and sat until 1:00.  We saw the neurosurgeon at 1:03 (we had a 1:00 appointment).  MD Anderson ROCKS at punctuality.  The neuro-oncologist came in shortly after and we were done around 2:00.

We are all exhausted but pretty happy with the second opinions.  The doctors were all wonderful and kind and ?thankfully all shared the same view on what to do-- wait and see.


So what did they say??  Basically- at Children's the neuro-oncologist was a little more hesitant to actually label what Liam has as a "glioma".  He just said 'whatever it is, it's there'.  He basically said he can't be sure of anything unless it grows or goes away.  (GOES AWAY!?  It can do that?!)  He feels as though we may benefit from having a blood test to check for neurofibromatosis (NF) and he would check with the guys in that department to see if they agreed.  At MD Anderson the neurosurgeon (who was the NICEST surgeon I've ever met) explained in depth how a surgery could possibly be done IF the tumor grows a lot- but he'd recommend doing nothing but serial MRIs for now.  The MD Anderson neuro-onc said he'd do the genetic test for NF but basically do the serial MRIs for now.

Interestingly- the all commented that Liam's strabismus was barely noticeable.  On the car ride home I made an appointment for a "re-measure" of his eyes because now I'm worried they will be over-correcting his strabismus.  Magically- they had an opening tomorrow at 8 AM.

Another doctor's appointment.  It seems never-ending.

Sunday, June 9, 2013


Wish us luck!  Tomorrow we start our whirlwind tour of Houston cancer hospitals.  Prayers/ thoughts appreciated that everything said is positive for Liam's future.

I'm super nervous. 

Friday, June 7, 2013

Appointment update

 I guess it really does help to know someone who knows someone, who knows someone.

We have our appointment Monday at Children's Hospital in Houston to get a second opinion from a pedi-neuro-oncologist.  It's at 9:50.  This is the appointment that my Ft. Worth specialist set up.

However---- I'd also talked with a friend who works at M.D. Anderson cancer hospital- which is across the street from Children's.  She spoke with a few people and got me the name of the patient coordinator for pedi- oncology.   I sent my friend Liam's MRI and she dropped it off with the head of pedi-neuro-oncology.   When I called to speak with the patient coordinator, she was basically waiting on my phone call.  She knew all about Liam and our situation already.  It was impressive to say the least.  Then, they truly bent over backwards to accommodate the fact that we were traveling in from out of town.  They gave Liam an appointment later than they typically ever schedule appointments. (Usually the last one scheduled is at 10:30- which we obviously couldn't make, so Liam got an 11:30 time slot and the request to "please be there as soon as possible". )
How awesome is that? I know know that pediatric oncologists are the nicest doctors that exist- but I'm so sad I had to find out this way.

So now, we not only have the Children's appointment on Monday, but I have an M.D Anderson appointment with both a neuro-oncologist and neuro-surgeon.  Wow.  Hopefully we get some positive views on Liam's case in Houston!  Wish us luck and keep us in your prayers please.

- Jamie

Wednesday, June 5, 2013

Pedi Neurology

Another specialist.

We've now seen ophthalmology, pediatric neuro-oncology, pediatric neurosurgery, and now- just plain ole' pediatric neurology.  Liam has seen more specialists in his 10 little months of life than I've seen in my 32 years!

So here's what we found out today-- Liam is normal.  Nice and normal.  No neuro deficits. No signs of any problems.  YAY!  We will have to follow up again in 3 months to make sure we stay nice and normal.  But normal is good.  I like normal.

On a funny note- apparently I have a big head too!  The neurologist measured my head and said it's above the 90%.  Guess I can't just blame Chase for Liam's big-headedness.

Tuesday, June 4, 2013

To my "Who" army--

Wow! We really got such and outpouring of love and support from everyone.

Liam is such a special little guy and to have so many people thinking of him and praying for him really means a lot.  I got cards in the mail, emails, facebook messages, text messages, and phone calls; all saying how people were with us in thought and prayer.  All hoping and believing that Liam would end up ok.

Thank you, thank you, thank you. And....... I really believe that he will be ok.  I still find myself praying every moment I have of silence- "please God don't let it grow" seems to be my mantra lately.

I also have a lot of people telling me how strong I am.  I don't feel strong.  I feel helpless and small.  I haven't cried myself to sleep since our follow-up so there's an improvement at least.   I try to keep day to day exactly the same so Liam doesn't know anything has changed.  He's back to sleeping well which is so much better than the waking up 6 times at night that he was doing right after the diagnosis.  I think he could sense our stress and that really disrupted him.

We have a neurology appointment tomorrow- this is to look for any signs of neurological involvement with the tumor.  The theory is we monitor for tiny changes- if any are noted we do another MRI right away.  Hopefully, tomorrow's appointment will be totally uneventful as will be all the follow-ups we will have in the future.

Well that's it for today.  Nothing really big.  Nothing really important.  Just wanted to say thank you for all your support.  Thanks for helping God hear us down here on our little clover flower.

-- Jamie

and if you got this far:

Isn't he the sweetest thing ever??