Thursday, January 22, 2009

Miracles, disappointments, birthdays, and surprises

First off, I just wanted to thank everybody for your support with my mother in law.  But the first topic of the title actually has to do with her.  She saw her oncologist for the 'mass' in her mouth that we all thought was cancer again.  Well, it isn't.  We all understood that the 'best case' scenerio would be malt cancer. Needless to say, we never thought that it could NOT be cancer.  Miracles happen and apparently  it is not this malt cancer.  They think it is just some kind of infection.  Tears of joy and relief were shed by many.  And now, as far as I understand, they will just watch and see what happens.  

Second, I saw the ENT on the 14th. I left with a nasal steroid and 'come back in a month'.  As far as that goes, I WILL be making an appointment for a second opinion.  After the appointment, I was replaying everything that he said and one thing stuck in my mind, and it wasn't good.  I was telling the dr. Spencer's medical history.  As I was explaining to the doctor, he made this comment, "Well even if a child had a cold and took a cat scan, it would show up as cronic sinititus.  Do you know that kids have 7-8 colds a year?"  Of course, it didn't hit me as to what he was implying until I was in my car going home.  You mean to tell me this doctor thinks that I was in his office because my son has had colds?!?!?!?!  Both he and I are complete fools, if he believes that.  I am giving him the nasal steroids and it really does seem to help, thankfully.  But I am pissed to think that this doctor thinks Spencer just has colds.  I will have to do what I have done in the past, video tape his coughing attacks.  And then prove to the doctor that I am not full of crap.  
There is another reason why I was disappointed, NO EXPLANATIONS.  He didn't tell me in detail what cronic sinititus even is, no diagrams of where his adeniods are, or how it affects your sinuses.  The dr. did mention that on a scale of 1-4, Spencer's tonsils are at a 3.  That explains his snoring at night (sometimes stop breathing) and we might consider taking those out, but it is hard to say since he has never had strep throat.  And his adenoids might be taken out.  My frustration, once again, is that I was expecting another Dr. Shimamoto.  Where everything is explained to me in lame man's terms, where he would draw pictures how the whole sinuses work, how he would tell me what he was writing down.  No such luck.  Dr. Kelly does not equal Dr. Shimamoto.  Boo hoo.

Third of all, on a happy note, Spencer had a great birthday party.  This conversation happened HOURLY at my house, last week. "My boys?  My boys readee for my birfday partee?" asks Spencer. My reply, "No Spencer, your boys are not readee for your birfday partee."  "Mom? Now my boys readee for my birfday pardee?" "Nope not yet Spence, in 4 sleeps they will be ready."  I love the fact that he went from saying, 'my friends' to 'my boys'.  You can imagine how excited he was that it actually came.  Football cake and all.  The funny thing is that the boys were very calm.  No high pitched screaming, no fighting over who is Gabriella, no jumping up and down in dress up shoes.  Just boys playing basketball and other games.  Good times.  Good times.

And finally, I had play group at my house this week.  I got into one of those moods where I wanted to make phone calls and appointments for everybody: dental, eye exams, health insurance questions, etc.  The boys were playing really well in Spencer's bedroom, or so I thought.  When parents came to get the boys, this is what we saw.

Brooke grabbed her son and ran, he was actually dry.  Cami quietly went out the door with her kind of wet son.  But I started laughing and grabbed my camera.  Sorry Cindi and especially Christa, who was literally leaving to go to NYC for work, your boys weren't so lucky.  I bet seeing her son completely soaked and having to put on new clothes was not in her schedule. The thing that I don't understand is how could I have not heard the water running.  Boy, those boys are sneeky.  Oh well, they had fun and it was really easy to clean up. Good times.  Very good times. (Mental note: buy more kid's shampoo.)

Monday, January 12, 2009

Stupid "C" word!

This post is basically for my mother in law.  You can read it if you want but just to let you know that I am writing to her.  

I would like to apologize for my behavior. I thought being mad at you would somehow make it go away but it hasn't.  I hate the fact that cancer has come up in your, and our, lives again, but it has. And so I am going to stop being mad; mad at you, mad at the doctors, mad at cancer, just plain mad.  I haven't even really explained to the kids what is happening again.  I guess that will be our subject for FHE tonight.  
This is my plan from now on: to be a supporting role through this, chemo and all. To help you whenever you need it.  To have the kids praying for you; for Mike and I to be praying for you, daily.  I know that you will fight through this again but I just hate that it has come back.  And then I thought to myself, if I feel this way, how in the world are you feeling?  For that I am truly sorry.  If you didn't know this before, I am a selfish brat.  I am sorry that I was thinking about myself and not thinking about your feelings.  I am sorry for being curt, short, or plainly, bratty. 
Mike and I are here to help you whenever you need us.  I know that you have felt the Comforting Hand before, and I know you will feel it again.  But I just wanted you to know that I love you.  I will be here for you whenever you need me.  I am so sorry for my behavior, you have done nothing wrong.  It has been me who needs an attitude adjustment.  Can I say sorry one more time, I'm sorry.

With that being said, let's kick cancer in the ass and then kiss it goodbye once and for all!  Don't forget, I can always shave my head with you!

I love you!  

Thursday, January 8, 2009


I GOT!!!!!  I REALLY GOT IT!!!!!!  I GOT THE REFERRAL!!!!!  I did exactly what I had planned: called Dr. Shimamoto's office and had Spencer's records faxed to us.  Called our pediatrician and made an appointment for first thing on Tuesday!!!  At the appointment, the doctor was very sympathetic and said enough is enough.  He was wonderful.  Little did he know that this was make or break time.  If he was even slightly hesitiant, I would have fired him.  That's right....Doctors work for me.  I am the boss!!!!!

I think it really helped giving him another copy of his AZ medical records.  He saw that he was on antibiotics for 3 weeks at at time trying to clear up his sinuses.  The great thing is that I have an appointment with Dr. Kelly (isn't that funny) on the 14!  Spencer's birthday.  I hope this is the best gift I can give him.  It will be interesting to see what the ENT says.  I may even get a second opinion and go to Dr. Muntz who is the head Pediatric ENT for Primary Children's Hospital. I have friends that have seen Dr. Kelly or Dr. Muntz and they really like each one.  Thanks for the support, neighbor referrals, and I will let you know how the appointment goes on Wednesday!! 

Saturday, January 3, 2009

Medical Frustrations

I hope you don't mind that I vent for a moment.  It is about my little bud, Spencer and his medical issues.  I am so over this whole coughing issue with Spencer.  I feel so bad for him and I feel bad for his body.  He has got to be exhausted.  All of his life, literally, he has had this horrible cough and would go into coughing attacks.  Sometimes his lips would turn purple, more often, he would throw up because he was coughing so hard.  When he was just a baby he would wake up in the middle of the night coughing.  I thought this was his way of saying he wants to be fed again, so I would nurse him.  Then he would go into such a coughing fit that he would throw up.  When he was a year old, I asked his pediatrician about it.  He said it is probably asthma since most year-old babies don't have allergies.  (Or maybe it is the other way around...I can't remember) So he was put on steroids and breathing treatments.  Not that much fun.  We did that for quite a while until I realized that the meds weren't really doing much.  We end up giving him more steroids and more breathing treatments.  Often times, the doctors freaking me out saying that he might have needed to be hospitalized if we would have waited one more day.  

Let's fast forward to when he is two years old, literally a year ago..... I talk to my friend about my frustrations since his coughing attacks haven't stopped and she told me that both of her girls see this amazing pediatric allergy/asthma specialist, Dr. Shimamoto.  (I recommend him to ANYONE!!!! He is amazing!!!!!) I called him up and made an appointment.  He listened to his lungs for a very long time and said he doesn't have asthma because he is not wheezing.  That is what I had been feeling, since his breathing treatments are useless, even though we still did it.  He said that maybe he has allergy-induced asthma where it is more allergies causing him to have these coughing attacks.  So he does an allergy test...negative.  He really isn't allergic to anything.  So now Dr. Shimamoto, who I love because he listens to me and he put everything in lame man's terms, says we are going to do tests.  Go down the list of 5 tests and see what it is. 

The first was a trip to Phoenix Children's Hospital for a sweat test to see if somehow he has cystic fibrosis, since I am a carrier.  Test came out negative.  Then he did a couple of other tests, mostly blood tests, all coming back negative.  The last test we did was once again at PCH, where he did a cat scan on his head and chest.  We find out that he has Cronic sinititus. Which is basically a constant sinus infection.  That explains why antibiotics would stop his coughing attacks but we really don't want him on antibiotics 24/7.  Remind you,  this is January/February 2008 and we are in the process of moving to Utah.  So Dr. Shimamoto says that the next steps are to go to a Pediatric Ear Nose Throat specialist and surgery will be involved, to clear up his sinus cavity so that he can breath again.  Great!  Wonderful!  Prayers are answered!!!!   so I thought.

I update our new pediatrician what is going on and he says that if he doesn't have the signs of being 'sick' then the ENT specialist won't be able to do anything.  So we have to wait until he has his coughing attacks again.  All summer long, Spencer was great.  No coughing attacks at all. That was short lived.  In late November, he started again.  He sounds horrible. He can't even sleep because he is seriously hacking up a lung. And of course EVERYBODY thinks he is sick-sick.  People at church give us bad looks like 'why in the crap are you bringing your sick kid to church?!" People at the grocery store shake their head and tell me I shouldn't bring a sick kid out in this kind of weather.  People at the gym look at me like, "are you seriously going to drop your kid off at the kids club when he is sick?!"  And my reply is always the same....."He has asthma,  we are trying a new breathing treatment". Even though I know that really isn't the case, it is just easier to explain it that way.  

So I see a different pediatrician, in early December, at the same office as our normal one since he had the day off.  I explain it to him and he says, here is a prescripction for Promethazine with codine in it to help him sleep at night.  If he is still coughing in a couple of weeks, come back in and we will say 'uncle' and go see an ENT."  I thought FINALLY!!!!!  We are where we were a year ago and time to move forward and get that referral for the ENT!!!  So he stops coughing until earlier this week, which I have given him more promethezine with codine, and that won't even stop it anymore.  On New Years Eve, I wake up to Spencer laying in the middle of my bedroom, staring at the wall, his lips WHITE and his face HAS NO COLOR WHATSOEVER!!!!!!!  I freak out, take him to our normal pediatrician and he says that since all of his vitals are normal, it might be a virus and he is just dehydrated.  (I was worried it was RSV or pneumonia) I ask him about the whole 'seeing a ENT' and he said, "If he doesn't stop coughing or he gets worse in the next couple of days, come back and we will see what we can do!"  I say, "OK, It is probably a virus.  have a great New Years Eve." and I leave.  What I should have done was bitch-slap some sense into this doctor, that I really do like, I really do, and refuse to leave until I got a referral for the ENT!!!!  

So here is the venting:  I am sick and tired of 'come back if he isn't better in a couple of days' crap.  "let's just give him one more prescription and see if that does anything"  Done with that one as well. He has had this for 3 years!!!!  Medicine is NOT helping!!!!!!  A YEAR AGO, he needed to see an ENT specialist and he still hasn't.  I really feel like an ENT would be able to help Spencer.  If any of you have heard Spencer's coughing attacks, he seriously sounds like he is going to hack up a lung.  I don't understand why the pediatricians are so reluctant to give me the referral.  UGH!!!!!!!  So here is what I am going to do..become Mamma Bear.  Monday, call Dr. Shimamoto's office and get another copy of Spencer's medical records.  Make an appointment with his pediatrician for Tuesday, he has Mondays off.  REFUSE to leave without a referral.  I even have an ENT in mind.  I just need a stupid referral. And then make an appointment with the ENT.  And hopefully get some answers.   Wish me luck.  Hopefully that won't take another year.