Sunday, October 31, 2010

So Much to Love about FALL

It has been a busy weekend! Saturday was our annual family & friend picnic at Letchworth State Park. This tradition goes back as long as I can remember and it is always a day to look forward to!

It was a chilly day, but we made the most of it bundled up, snuggling by the fire, and of course playing in the leaves!




We hunted for prizes in the leaves (thanks Auntie Robin!)



The kids pretended to be squirrels and searched for nuts (peanuts of course!)


  There even was a silly game called “Don’t drop grandpa’s eyeball!”


Allie got a little rest on walk with daddy.


Pumpkin bowling!



Finally the kids got to make their own clay pot jack-o-lanterns.


Aren’t my nieces the cutest?


The next the whole crew was back together again in church!


Later in the day it was time for trick or treating! Don’t worry, they spent several hours in between not in their costumes:)

Here are Pooh (Cara), the Honey Pot (Allie), Tigger (Eli), and Eeyore (Brady).

DSC_0679DSC_0688 Little Miss Honey Pot was quite the independent girl throughout the evening. She kept yelling, “I do it myfelf!” She wanted to go up the stairs by herself, down the stairs, and certainly wanted to put the candy in her bucket HER-FELF!

The kids LOVED being out and about for Halloween! We walked up to my mom’s and had dinner. We stayed there for a bit and watched the trick or treaters coming to the door.



Then it was time to go and get some candy!

DSC_0700     It was just SO much fun going around town just the 6 of us. The kids had a ball seeing all of the other costumes walking past. They even were intrigued by some of the spooky sights. After each house we stopped at, Brady would say, “Okay, we need to go to another house! I still have an empty space in my bucket!” They would march up to the houses singing the Little Einstein's “We are here to Trick or Treat!” song. Allie fell flat on her face a few times, but with all that padding she was fine. Matt and I couldn’t help but laugh as she just laid there on the ground and instead of trying to get up, she would just attempt to gather all of the candy that had fallen out of her bucket.

Our night ended with a candy party on the floor of their bedroom. The 6 of us sat there and ate candy together. What awesome memories:)

Thursday, October 28, 2010

Halloween Fun

There I said it! Halloween is fun again:)

Thinking back to my teacher days (you know, long ago before I had children) I really used to dread Halloween. For me, it was certainly the worst of all school-celebrated holidays. The kids were way-over-excited, I remember many assemblies this time of year, and I always scratched my head at why we could talk endlessly about Halloween traditions but had to only talk Santa and reindeer at Christmas. Anyway…

Now that I have kids of my own, however, I’m embracing this fun time of year again! Not that my house is decked out in cobwebs (at least not the unnatural kind) and grim reaper statues, but we are starting some fun traditions to mark this time of year.

I really liked what Kristen briefly wrote on her blog  about Christians and Halloween. And while we don’t plan on staying home to hand out candy this weekend, we aren’t going to sit home and pretend this day isn’t a part of our culture.  Instead we will put some fun costumes on, get together with friends and family, and show that we can share God’s love every day…even on Halloween!

Today the kids did not have preschool, so we decided to invite a few friends over and have a little Halloween party. I got to dust the cobwebs off of some craft ideas from my teaching days. We made ghost lollipops and handprint bats.



The kids all had a wonderful time and so did the mommies:)

My kids thought it was great because before lunch they had already eaten their fair share of donut holes, peanut butter cups, and lollipops. It makes my stomach turn to think of the sugar they will ingest this weekend.


Monday, October 25, 2010

Never Alone

I just want to take this chance to say thank you to all who prayed, called, or even left supportive comments on the blog and facebook. Last week was really small potatoes if you consider what so many families are dealing with. More than anything it was just difficult because of the fear of what could happen. Perhaps the silver lining in it all (other than the good results!) is that we felt very loved and embraced by our friends, family, and yes...even out internet "friends."

Thank you for lifting us up when we needed it.

With love-

Saturday, October 23, 2010

Random Update on Things

Sometimes when I sit down to write I just have a few unrelated things on my mind with no real flow to them. So here you go!

Matt and I went to a wedding tonight. Well, actually we went to a wedding reception tonight. We just couldn’t figure out how to get everything done this weekend and be able to go to the ceremony and reception. Still, we had a great time and got to get all dressed up.  Not too shabby for two old married people with 4 kids:)


The kids have all been sick this week. I’ve wiped more noses this week than ever before! Poor Allie had the worst of it. I think we are on the upswing now.

We are still trying to process all that has happened with Brady’s scans last week. I took him for a follow up appointment with the oncologist on Thursday. He is pretty confident that the change in the measurement of the “spot” on Brady’s spine is due to the position he was laying. He went back and compared this scan to some that were done last year, just to make sure that this change hadn’t started long ago. He couldn’t see a real difference from then to now.

When we left Sloan after Brady’s surgery in April 2009, we had to make a decision whether or not we would return there for our follow up care. If it weren’t for the distance, cost, and disruption to our family life, we would be there for all of Brady’s follow up care. However, given that Brady’s surgery was so successful, the doctors there felt we could use our local hospital for follow up care.  We kind of made an agreement between us though that if anything at all every happened as far as a relapse or something didn’t look right, then we would return to Sloan immediately.

This has nothing to do with any sort of distrust with our home hospital or doctor. We absolutely trust our doctor and think he is wonderful.  The truth is though, Neuroblastoma is a rare cancer. There is no way for our oncologist to be a specialist in Neuroblastoma when he only see a few cases a year. There is a team of oncologists at Sloan who deal only with Neuroblastoma. The radiologists they work with read scans every day that are just of Neuroblastoma tumors. The surgeon that did Brady’s surgery operates on a handful of children with Neuroblastoma every week. The reason we went to Sloan for Brady’s surgery is because they are considered by many the best in the world.

So now we are in a situation where we have this unusual scan. We aren’t highly alarmed at all anymore. The urine results came back normal meaning that Neuroblastoma is not raging in his body. However we have read about kids where the urine test has not been an accurate predictor of active NB, in other words, there are rare cases of false negatives. We are trying to decide if it is wise to send the scans to Sloan for their radiologists and Dr. LaQuaglia (Brady’s surgeon) to review. Perhaps they are used to seeing this sort of thing with this particular surgery.

Certainly we are leaning towards being cautious and thorough. I just want to be able to consult Sloan and maintain a great relationship with our doctor here.

In other news, and on a much lighter note, the kids and I got outside this morning for quite a long time. We just walked around the house and yard exploring and talking about all the changes that fall brings. They had fun squishing crab apples that had fallen off of our neighbors tree. They loved taking rocks from our landscape and piling them up on the stone wall that flanks the edge of our property. And then there was the raking…

I raked and they kind of unraked! They had a ball “helping” me pile the leaves up and get them in the big bucket! The best part of all was raking up the maple leaves and then jumping, rolling, and hiding in them.


I had to include this next one. Here is Eli perfecting his “outdoor Kleenex” move! Ewwww….


And this is so typical of my boys. I had them all posed to take a group shot, and all of a sudden they were crawling to look at the moth that landed a few feet away. “Look Bwady! Its an amazing butterfly!”



Can you believe that my baby will be 2 in just 2 weeks!!! Sigh…


Wednesday, October 20, 2010

Results are In

Just checking in briefly to say that Brady's urine results came back completely normal!!! This means that the 1 millimeter change on the scan must have been due to some kind of inaccurracy.

We are relieved. We are thankful. We are exhausted from worry:) We are moving on.
Thank you for your prayers. God has seen us through another bump in the road.

I'm off to tend to some sick kids. Brady has a fever and is really lethargic today. Allie has a bad head cold. You can bet I'll be wiping noses and giving out Tylenol with a big smile on my face!

Monday, October 18, 2010

The God of Big and Small

Have you ever found yourself stressing about the little things?

The dishes in the sink, an upcoming deadline at work, an argument with your spouse, maybe even worrying about a certain millimeter?

If you are like me, you probably tend to turn to God more when the big things of life come your way. Isn’t it true that we tend to ask for God’s help and guidance more when life throws the big curveballs like illness, crisis, and in times of emergency.

Why do we shortchange God in this way? It’s almost as though we figure God only has time for the big stuff, and that he leaves the little things to us. That is so not the way He wants us to be.

Dwelling on all of these truths has helped me find some peace during this time of wait and worry. Have you ever had scripture pop into your head at just the right time? This week I thought of the hymn His Eye is on the Sparrow and then the scripture that the song is based on.

Matthew 10: 29-31

29Are not two sparrows sold for a penny[a]? Yet not one of them will fall to the ground apart from the will of your Father. 30And even the very hairs of your head are all numbered. 31So don't be afraid; you are worth more than many sparrows.

The God who knows every hair on my head, and your head, and Brady’s head cares about every big and little thing in our lives. He is the God who created us, after all!

I’m totally loving this song these days and wanted to share it with you. What a great reminder that our hope and trust is in a very safe place when we lay it all down at the feet of Jesus.


Friday, October 15, 2010

1 Millimeter

The oncologist called tonight and gave us an interesting report. "The Spot" as we call it (the tiny piece of tumor left in Brady's spine) has not changed since his surgery in April of 2009. Today's scans show a 1 milimeter increase in its size. The oncologist and the radiologist are not concerned and are theororizing that the 1 milimeter difference is due to Brady's position as the scan was taken.

We will have to wait until Wednesday when the urine results come in to be absolutely sure that no tumor is growing. If the urine levels are higher than last time, that would indicate the presence of active Neuroblastoma. The oncologist is quite confident that all is fine.

1 milimeter. Such a tiny measurement can cause quite a stir in my heart. I know most of you don't know the significane of a relapse of Neuroblastoma, and quite honestly, I don't even understand all of it. I do know that it would instantly plummet Brady's chance at long term survival.

My prayer is that God will not allow this 1 milimeter to deter my faith, that His mighty hand will be on this 1 milimeter and make it nothing more than an inaccurate scan. Thank you for your prayers for Brady. I'm calling all of our faithful prayer warriors to join us in praying that this spot is nothing at all.

The Post in Which I Rant About Hospitals

disclaimer: The following rant does not represent my feelings about every hospital or every doctor. I have nothing but the highest praise for several doctors and hospitals, including those who were directly involved in saving Brady's life and those who continue to provide our family with excellent care. The following rant is directed towards the many hospital personnel who have failed to do their job due to oversight, laziness, or pure stupidity.

Today really sucked. Excuse my crude language, but it was awful. Earlier in the week when the anesthesia care unit nurse called to go over things, I knew I had better ask her if she received the requisitions for Brady's bloodwork and urine test. These two things are always performed during Brady's scans and the samples are sent directly to the lab. Of course, she hadn't received them. Matt faxed the Pediatric Oncology Department requesting that they send the requisitions down to the nurses who would be working with Brady today.

Of course when we got there this morning at 6:45am, there were no requisitions for blood and urine. Annoyance #1 of the day. The nurse promised us that she would call teh oncology department and have it taken care of. We knew this would prove to be more difficult than that, so we made a plan to go up to the department ourselves once Brady went in for his MRI.

Before the MRI, the anesthesiologist came in to talk with us. We had requested a specific anesthesiologist earlier in the week. We have learned through a few bad experiences that having a doctor who actually listens to you, takes your experience into account, and uses the drugs that you know your child tolerates well is the best way to handle anesthesia on a child. Annoyance #2 of the day is that we did not get our preferred doctor. Fine. This doctor seemed decent enough. He quickly asked us a bunch of questions and then asked us "how we usually do it." Assuming he was inquiring about the medication that Brady usually gets, we answered, "He does great with Propofol." A little side note...propofol is this awesome drug that will put you to sleep quickly, and when used correctly (not like Michael Jackson) allows you to wake up pretty quickly and feel back to normal in a short amount of time. Brady has had two other methods (Versed and using all gas) which have been terrible for him. One time we ended up back in the ER, then were admitted to the hospital for 3 days with a high fever, and the other time he woke up like a raging maniac and threw up for hours.

After I said the comment about propofol, the doctor said, "Oh, okay, propofol." I should mention that this doctor was Russian, with a thick accent. His resident was Japanese, also with a thick accent. Somehow I'm coming to believe that minimizing the language barrier in situations involving anesthesia is a very important issue. Anyway...moving on.

Matt accompanied Brady back to the MRI room where the doctor was really great with him. He put the mask over his face and told Brady that he could talk into it and Santa would hear him. Brady asked Santa for a blue bike and Matt said that he didn't cry or struggle at all. What a great boy. As they were getting Brady settled after he was out, Matt said to the doctor before leaving, "Propofol, right?" to which the doctor replied, "yes."

With 3 hours to kill, we decided to go and hunt down the requisitions that should have been faxed down days ago. After all, we have been doing this for how long? On our way, I get a cell phone call from the Oncology secretary who asks me what I need. I told her that Brady needs to have his urine and blood tested. She replies that she checked his chart and that he doesn't need those done. He has ALWAYS had these tests done, every single time. You all know this because I blog about it every time! She claims that another one of the oncologists looked at his chart and confirmed this. I told her that I think that is wrong, and that to me it makes sense to test his urine for the marker for, well, you know...NEUROBLASTOMA! Perhaps it is a good idea to check to make sure his body isn't producing a higher than normal level of these proteins. Maybe I'm just slow...

She tells me that she we gladly just do the req for the urine, so we head up there to pick it up. After a few minutes waiting, the secretary calls and says that indeed he does need the urine and blood work done. Imagine that. Annoyance #3 of the day.

We head down to the cafeteria, after dropping off the requisition to the nurse in the MRI, and try and pass time for the next few hours. He was in the MRI from 7:45 until 11:00am. The nurse comes out to get us and says, "Brady's back and has been awake for a while now. You can come back" We always, always, always get called back just as he gets back so that we are there when he wakes up.

I can hear him crying from the hall. We get there to find him totally covered in sweat and vomit, and he is completely purple on one side of his face, neck, and on his left hand. Brady has Horner's syndrome, a result of his last surgery, which interferes with his sympathetic nervous syndrome. When he gets hot or upset, his left side of his body doesn't sweat like the right, so he gets a literally line down his face, one side red, one side not. Often one hand is cold, while one is hot. This was the worst I had ever seen it. He was very upset and Matt immediately knew something wasn't right.

He asked the resident anesthesiologist if he had gotten propofol. The resident responded, "No, just gas." Well, Matt about flipped out on the guy and immediately questioned why this was done when we had told the attending two times, directly, that he needed to have propofol. The resident just kept apologizing, and saying that it was a misunderstanding. Matt was livid, I was worried, and poor Brady was really sick. He was just writhing, sweating, vomiting...awful. Big Annoyance #4 of the day.

After we unleashed on that doctor for a few minutes, he said he was going to get the attending. The nurse gave Brady another dose of antinausea, which at this point was no use. Brady is really sensitive to gas, and always responds with bad vomiting. After about 20 minutes the attending showed up. He calmly and repeatedly apologized, made excuses, told several versions of what he thought matt had said. He basically reasoned that there are several ways to use propofol, one of which being to use gas, then a little propofol, then gas again. He thought that is what we were referring to. He thought he was confirming with us to use that plan. There are like a million reasons why this shouldn't have happened. Here are a few:

1. Why don't these doctors look at Brady's chart. He has had these stupid MRIs done like 6 times now. Obviously we should have it down by now.

2. His interview with us before hand lasted all of 2 minutes. If he was unsure he should have asked more questions.

3. He actually admitted that the resident set everything up and had gas out to use. He claims that he always uses propofol on kids, but since the resident set up gas, and usually the gas is very effective and safe, that he just went with it. My suggestion, is to tell the resident what you want him to do. Seriously.

Brady threw up 4 times there, once in the hallway on the way out, and twice in the car on the way home. Vomitting while intubated can be dangerous, and vomiting when you are groggy can be dangerous. I absolutely hate to see my boy so sick because of mistakes. Last time he had scans we went out to lunch afterward and Brady ate chicken nuggets and laughed with us.

If you are still reading, thank you for allowing me to rant. Remember that I use my blog as a medical record. I can't tell you how many times I have referred back to it for medical information.

The moral of the story. Mistakes happen when dealing with humans. I make mistakes, you make them, we all do. I honestly can't tell you how many times I have encountered mistakes within the medical community. I hope that people who follow Brady's story learn from it that you absolutely HAVE TO stay on top of those providing your care. Ask questions, make your opinion heard, and don't take no for an answer if you know you are right. If I had a $1.00 for every time a doctor has apologized to me, I'd have a nice college fund going.

In important news, I have emailed the oncologist and will hopefully have results for you later today. Let's pray that the radiologist reading Brady's scans brought their A game today.

Tuesday, October 12, 2010

Peace in the Midst of the Storm

Scan day is Friday.

You know the drill. I'm feeling worried, anxious, nervous, sad...

Each time does get easier as I intellectually know that the chance of relapse decreases with each passing day. But there is always a chance.

I do feel a sense of sadness more than ever before as we approach these scans. I know that it is because Brady is older and wiser. This whole process is so sad for a little guy. I know (believe me, I do) that what he will endure is nothing compared to what the amazing warriors who are in active treatment have to do deal with every day. But in the world of a happy and healthy 3 year old boy, what will happen Friday will be scary, new, and uncomfortable. We have blessed so far in this process in that Brady doesn't ever really remember the process involved with scans. He hates it as it is happening, but doesn't seem to carry over the trauma or fear from one time to another.

But now as a savvy 3 1/2 year old, I'm sad for him as he will certainly know that something is up. He has also made a few comments to me in recent months about the "guys with the masks" coming near him. Matt has to carry him down to the MRI room. Once in there, they are kind of surrounded by the big machines and several people (nurse, anesthesiologist, radiologist) who are in their scrubs and masks. To get him to sleep they have to hold a mask over his face and administer gas. Of course his instinct is to fight, and I can only imagine this is so scary. After he is asleep they put the iv in his arm to administer the anesthesia through it. He is under anesthesia for several hours while they do the scans. Then he comes back to the recovery unit and begins the process of waking up. Sometimes this goes smoothly, other times not. One time Brady even had a partially collapsed lung after being intubated. So there is always cause for worry.

Then comes the waiting. We are so blessed that our oncologist is awesome at returning emails. I will only have to email him once on Friday when we get home and ask him to check for the initial radiology report. He will call me right back and give me the news that afternoon or evening.

It's funny how I find myself in a cycle of worry-prayer-peace-worry-prayer-peace....I'm so predictable! I'm amazed at how gracious God is with me in that each and every time, He is there for me when I inevitably fall back into the worry-trap. He knows that I am just a mom who loves her boy so very much. He knows that I have seen the horror of what cancer can do and he knows that I fear that more than anything else in this world. He knows me, and I'm so glad.

This song always comes to mind during times like this. I hope that this song reminds you that no matter what the storm in your life, that God can give you the peace, strength, and hope that you need to endure.

Sunday, October 10, 2010

Stokoe Farms

Yesterday we were off for a day of Fall fun at Stoake Farms in Scottsville. This was a new place for us, and we all loved it!


Stoake Farms is a Christmas Tree Farm with gorgeous trees of all sizes in the fields. Of course the lovely autumn leaves made for the most stunning backdrop.


It’s a pay-one-price for everything type place which I love. Once you pay your admission, you are free to just wander and explore.

There were wagon rides.


Giant wheels that you could walk inside of. This is extra fun with the under 4 crowd:)


A silly clown who rode on a tractor that had a fire breathing smoke stack! Oh, and bubbles coming out of the front. This was Brady’s favorite part of the day!


A mini pumpkin launcher.


And 4 pretty cute spectators who cheered Daddy on as he launched the pumpkins!


While her siblings landed on their butts at the bottom of this slide, Allie figured out a way to dismount in style! She only fell once and the rest of the time landed on both feet and kept going!

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A few unexpected surprises…



And I thought I was a mom of multiples.


As this was a new place for us, thank goodness we had Eli, our “map man,” there to tell us which way to go!



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My one and only suggestion to anyone thinking of visiting this wonderful place is to pack a lunch. I thought it would be fun to buy our lunch there, so all I packed where the kids’ drinks. I waited in line for an hour (literally) for our lunch. This is one area I think they could use some improvement in, even though the food was good. Next time, I will pack ours for sure!