Saturday, March 31, 2012

Sidenote

When we finally were brought to the Post-Op recovery, around 8:30 pm, Emmett had been NPO the entire day, except a juice box that morning.  Last time he woke up from surgery, he chugged a whole cup of water right away & when we got back to the room, he ate a big serving of mac-n-cheese, so I waas pretty sure he'd be starving after an even longer day.  It was torture to have him being so sweet, not crying or really even fussing too much through all this & just asking for food & drink & to have to tell him no.  So you can imagine how annoyed I was in Post-Op when I was told he was still NPO because they had ordered a Post-Op MRI the next day!!!!  And you know that never happens first thing in the morning.  I told the nurse there was no way they could make him fast that long!  Well, she checked with neurosurgery, who had scheduled it. Luckily they said he could eat-only until midnight & now this morning we're hoping they do the MRI early, but we're not holding our breath.   

Surgery #3

Emmett made it through the surgery and is recovering nicely.  The tumor had grown back in 10 days since the last MRI was taken - this means it's extremely aggressive.  It had also become involved with his spinal cord.

We start chemo on Monday as soon as Emmett is medically ready to receive it.

We're really glad we took Emmett to the ER last night and discovered this regrown tumor.  It is nothing the doctors expected, or even believed was possible (or so it seems).  We're still really happy that it doesn't look like it has spread at all - all other scans shows no tumor - we have a post-op MRI tomorrow to verify.

We believe in miracles and are grateful for a series of events landed us in the hospital last night where the doctors could to discover what they did.  The hand of the Lord continues to be manifested in so many ways.  Let's pray that Emmett's body responds to the treatments the doctors have planned.

Micah

Friday, March 30, 2012

Friday's Update


For those of you not on Facebook, I just copied & pasted what Micah just posted & then added a few thoughts of my own at the end since I have a minute:
"Emmett just went in for another emergency surgery to remove tumor compressing his spinal cord. We took him into the ER last night because it seemed he was in pain & weak, and today they did an MRI and found that the tumor that remained in his spinal column after the initial surgery has regrown and is again compressing his spinal cord, much like before his first surgery (except this time it's extradural ...tumor that's causing the problem, not intradural). So much for his symptoms being a result of coming off the steroid too early.

We're hopeful the surgery will go well. This surgery shouldn't be as dangerous as his first surgery because they shouldn't have to enter the dura which increases the risk of spinal cord damage.

Thanks for keeping us in your prayers as we go through this additional surgery."

So much  for thinking...hoping.... it was just inflammation.  They said because of the steroid, he probably is still walking.  The compression is more so than last time, possibly.  The saddest thing is that he was NPO (fasting) for the MRI (because of the sedation).  We didn't get in until 1.  He kept asking for food & drink the 2 hours we waited. I told him the doctor was going to help him take a nap and then when he woke up he could have whatever he wanted to eat.  After the MRI - around 3:30 - he woke up & asked for food & a drink.  The surgeon was there with bad news almost as quickly as we were there. (You'd think we'd be savvy enough at this point to realize that fact alone was bad news.  The surgeon had come by the room in the morning, looked at him as he was kind of waking up & more or less said he looked fine.  To see her in the MRI recovery as soon as we were should have been enough communication.) They said they were taking him to surgery right then.  As we sat in Pre-Op for 20 min or so, Emmett kept looking at me asking for food or drink and I just felt horrible having to tell him no.  He is so hungry & sad, poor guy.  Had some apple juice earlier this morning & that's it.  He's a trooper though.  Wish I could take him out for a steak dinner after this...

Thursday, March 29, 2012

FYI

I added some pictures to the Surgery #2 post & also to the Freedom Trail post.  There are a few new posts I just put up today, too, so keep scrolling down!

Update

Unfortunately, they did not get the prescription called in (& our doctor was out of town) and after a lot of frustrating phone calls, 30 hours later we had the steroid. His arm is weak. It's very sad-last night he was rolling & kind of whiny on the bed. Micah realized he rolled onto his tummy & was trying to push himself up, but his left arm was too weak so he couldn't get up & instead was just kind of rolling round. It made us both incredibly sad. We hope the steroid kicks in to keep the swelling down around the nerves so his left arm & hand will be working better.

Our oncologist called yesterday. She said they have consulted with Brigham & Women's & she's checked with some other pathologists. She herself has even gone down to the lab & looked at the tumor under the microscope. I think there is a bit of curiosity about the characteristics of the tumor. She is also away today & tomorrow (Thursday & Friday) at a National Children's Oncology Group Conference (a lot of pediatric oncologist from all over the nation get together) and she was interested in consulting with other pediatric oncologists about the diagnosis & pathology.

What she was able to tell us is that the topline pathology will read something like 'INI-1 negative...." and was a long description. She said it will be a description instead of the name of a tumor. The pathology is still pending one more chromosomal test on the tumor, but what it all means is that they will most likely still be treating it just like AT/RT & that it is AT/RT with some type of variation maybe. We will meet with her for a final consultation & discuss in more detail the final pathology report & the details of treatment on Monday. Tuesday we have another procedure that will establish baseline for the flow of his CSF (cerebrospinal fluid). Later in the week he will have a port placed in his head for intrathecal chemo (chemo that is delivered directly to the CSF). After a day or 2 of recovery, chemo should be starting. This is all pending our consultation & final decisions made with our oncologist next week. This is our latest update. It sounds terrible to be excited about starting chemotherapy, but truthfully we are hoping to start soon while it is still localized & there is a good prognosis!

Weekend Pics

Emmett was fascinated by this swarm of ants and was happy to sacrifice a cheese cracker to them!
We kept checking back on them. By the next day, there were no signs of the ants or the crackers. Even I was pretty impressed. The high school is just a few houses down, so maybe some kid got hungry on his walk home & ate them. I'm pretty impressed the ants could hide them completely!

Cranes

Mom came up with an idea from a story she read years ago.  She wants to string 1,000 cranes together for Emmett.  Sunday afternoon some family friends came by with the first set of cranes!  Mother had the idea that everyone that makes a crane writes a little miracle they've seen or a story of faith or message for Emmett on the paper if they want.
Here's the start!
  

Tuesday, March 27, 2012

Freedom Trail


March 13, 2012 Tuesday
Emmett's MRI had been canceled (& luckily isn't actually necessary pre-surgery so we don't need it, which is one less appointment this week!) so we had a free day. Tuesday morning it looked a little gray & drizzly, but by early afternoon, we lucked out & had yet another fabulous day. Unheard of in March to reach almost 70 here in Boston, but we headed downtown to do some site seeing!
The easiest way to see a lot of historic sites for someone that truthfully doesn't know a lot about my hometown is to just follow the Freedom Trail. It's a genius idea someone had a few decades ago-they painted a redline across the sidewalks to a lot of the historic sites that people love to see. You can see a lot of interesting points of interest & not get lost!
We started out at Make Way for Ducklings near the beginning of the trail & then we made our way through the city. Emmett loved being outside, which is a main motivator for these activities. He even napped in the stroller for an hour or so.

I believe this is in the old State House entrance, which is now a museum

The Old North Church
("one if by land, two if by sea")


We ended at the USS Constitution & didn't go all the way to the Bunker Hill Monument.
It's from the original/first Navy commissioned by George Washington (I believe).
Also known as Old Iron Sides & is the Flagship of the Navy still.





Finally taking a breather after walking all afternoon



The North End is where all the Italian immigrants settled and to this day the Italian culture is very dominant there, so it's the place to eat! We went to a hole in the wall, but more popular pizza place, Pizzeria Regina. Yummy! Then we hurried back to our cars that were at the beginning of the trail before it got too dark.



We felt really lucky to have 2 beautifully warm days in a row! Especially when Wednesday morning we got up to head down to the hospital & it was quite chilly again & stayed that way all day, we realized what a blessing it had been!














Monday, March 26, 2012

Roller Coaster

The last two days have been a little scary. Saturday night Emmett woke up screaming and stayed up most of the night. A few months back there was a period of a couple weeks that he would wake up screaming in the middle of the night and we thought he was teething. It wasn't much longer until we found the tumor. Naturally Katy and I were a little freaked out when he started doing it again.

Sunday morning he was really lethargic and cranky. He only wanted to be held and never moved around much. It was pretty clear to us that he was in pain. He had some teeth coming through and we thought that might be the reason, but in Emmett's situation, what do you do?

We made it through Sacrament meeting then came home. He fell asleep in the car, but wouldn't go back to bed once we brought him inside, so finally we got back in the car and drove around for awhile. He did fall asleep for about an hour, but then was back to moaning and groaning. We had given him some tylenol earlier in the day, but it didn't make much difference. He was a little better in the evening, but seemed to be in pain again by the time we went to bed. In addition, we noticed that he his left hand was getting worse - he had stopped using it completely by bedtime. He woke up throughout the night again.

Monday morning we called and left messages with our doctors (neurosurgeon and oncologist) to find out whether we should bring him in. He'd had an MRI a week ago and we couldn't imagine things could progress that fast, but we wanted to error on the side of caution. We were all prepped to go to the ER when we finally got the oncologist on the phone. She said it sounded like he needed to be kept on steroids for a little longer (his prescription ended on Friday). The steroids keep inflammation down after surgery, and it's common for inflammation to return if the steroids end too soon, she said. Often in these cases the symptoms get even worse than they were before surgery which would explain why his hand had gone limp.

She renewed his prescription, and in the meantime we started using more tylenol which started making a difference today. He was playing again by early afternoon and was almost back to his normal self tonight. Crisis averted, for now!

It's so sad to watch Emmett lose function. It's been so amazing to watch him grow and develop over the last year and a half, and the thought of watching him digress due to his illness destroys you as a parent. We're so glad to find out this was all due to medication! We're hoping and praying for good news from the doctors this week - as of last Friday they were still undecided and were sending samples out for 2nd and 3rd opinions. We're still expecting miracles and fully believe everything will work out in the end.

-Micah

Friday, March 23, 2012

Post surgery pics

We have nothing new to report on today. We are still waiting for the new pathology reports as well as new information from the doctors. In the meantime, Emmett is recovering from surgery like a champ. Enjoy these pictures. They are at odd angles because they were captured while he played with the camera on an iPad.

For comparison, some pre-surgery #2 pics:



Now some post-surgery pics. Mind you, this is the day after he had his surgery. He did not need ANY paid meds that day! The small bandage on his neck is covering his newest stitches. You can also see where the broviac central line was inserted.



This is Emmett trying to make his fish face. He has been able to do it better, but it takes some warming up.



Back "home" (2 days after surgery)




An appropriate picture to end on. It is late and I'm feeling like that. Good night!

Monday, March 19, 2012

Surgery #2

Emmett had his second surgery today to remove the remaining tumor. (Well, 2nd for the tumor, but 3rd total if you count the line placement) The surgery took place over 4.5 hours and was conducted at Children's Hospital Boston. The surgeon was Dr. Lilly Goumnerova. During our post-op conference she indicated that she was only able to remove ~50% of the remaining tumor without risking nerve damage. She also indicated that the tumor looked like a nerve sheath tumor and nothing like ATRT (essentially the same thing that Dr. Marchand told us at UNM). She wants to have samples sent to more than one pathology lab and says that our current treatment plans are on hold pending conclusive results. (As a side note, we requested a second opinion at UNM and they said "if St Jude says it's ATRT, it's ATRT". I'm glad they're willing to consider other possibilities here at Dana Farber.)

At this point we haven't talked to the oncologist yet...at UNM it was the oncologist that always squashed our hopes. We are cautiously optimistic - however, we thought we were in the clear after Emmett's first surgery and a week later received the ATRT diagnosis.

There's always the potential of discovering it's something worse than ATRT. For now we're still preparing ourselves mentally for ATRT treatment. But we are hoping and praying for a miracle, and hopefully we're one step closer to finding the right treatment plan after today's surgery.

Emmett's doing great - he was smiling tonight for Uncle Cris, he's enjoyed Winnie the Pooh twice since surgery, and is eating like a champ! What an example for the rest of us!

Our hearts go out to all of you for your thoughts, notes, comments, prayers and faith on Emmett's behalf. Thank you so much for your love and support.

-Micah, Katy, and Emmett

Once Emmett found the Child Life room at UNMH, he cried every time the door to the hospital room opened or shut without him being a part of the leaving. He's pretty bright & figured out that BCH must also have a playroom & all he wanted to do was leave the room to walk the halls & play in the Child Life (toy) room. Here he brought the shopping carriage back to the room with Nana.
Cousin Tyson brought him Mom (Aunt Michelle) to come visit. It was in the 80s! so we took advantage of going out to play in the gardens. It's completely enclosed by hospital buildings & libraries, so it's private with no street access. Emmett doesn't normally love a stroller, but he loved this ride...I think because he knew he was kind of getting away with something sitting on the footrest ;)
It was Child Life week & they had some extra fun activities. This was a Candy Land theme activity & you got a teddy bear & could take him around the 'gameboard' & collect stickers & take your bear to the doctors, take his x-ray, take blood, feed him a cookie, etc...
Emmett found a duck in the gardens! Boston Children's was built in the late 1800s & obviously has been added on to & renovated a lot since then, but I'm thinking this little guy might be part of the original gardens or building or something pretty old. They had some preserved statues throughout the gardens. As soon as he saw it, he started squawking his "Wack Wack!!"
The landing pad for the Life Flight was right above the gardens also & the first time we went out, it happened to be taking off, which Emmett found fascinating. Every other time we went out, he'd look up trying to find the helicopter.
Going for a stroll in the gardens with Nana. We realized that you aren't supposed to walk on the grass, which was kind of sad because that makes the gardens more of just a hot spot for all the staff to eat lunch and not really a place for kids to play as much, but it was still nice to be outside.
Cousin Tyson is a good runner, just like his Mom & Dad!
A friend was so thoughtful & made us dinner one night. Cris brought it down to us & it was still so warm outside in the evening that we ate outside on the garden patio.

A favorite-being chased by Uncle Cris after dinner!

Saturday, March 17, 2012

Calm before the storm

To give everyone their Emmett fix, here's a picture from last week:


Now for an update. Despite all our expectations that Emmett would begin treatments almost immediately, switching his care to Dana-Farber has ended up giving us one last week before treatments begin. We did meet with both the neurosurgeon and oncologist on Wednesday but have otherwise been able to visit with family, see some sites in Boston, and generally enjoy being around Emmett. For his part, Emmett has been happy and healthy, and is loving playing with all his new toys as well as being entertained by his grandparents, aunts and uncles. Among his successes this week are 1) climbing up and down stairs again 2) playing so hard with grandpa that grandpa lost his voice and 3) experiencing African wildlife in IMAX. It has been a calmer, relaxing week that has allowed us to prepare ourselves for what is coming. It has also been great to have family here to "divide and conquer" some of the many unknowns still out there. For example, how do you bathe a child who has a central line that is not supposed to get wet??? How do you tape/wrap it so it stays dry? There is a lot to be learned still.

Anyway, back to the doctors - both meetings were consultations to discuss treatment plans. The rough consensus was surgery to remove as much of the tumor as possible followed by chemotherapy and radiation. There is a Children's Oncology Group that meets every Thursday to discuss new cases. Emmett's case was up for discussion with the group this week and would allow a larger body of experts to hear about his unique circumstances and provide any additional suggestions for his treatments. Following that, plans were finalized.

Emmett will undergo surgery to remove the remainder of his tumor Monday. It is anticipated the surgery will last 4 hours and will be followed up by at least a couple days recovery in the hospital. We had a pre op appointment Friday morning. There is no scheduled pre-op MRI because Dana Farber has a fancy operating room that has an MRI in it. This means they can image during the operation, allowing them to see remnants of the tumor before they close him up, hopefully improving the success of the surgery, as well as minimizing the number of times he needs to be sedated.


Chemo and radiation will begin likely two weeks after surgery, giving his body a chance to heal a little first. There will be a follow up surgery to place an intrathecal catheter under the skin in his head. This will allow chemo to be injected directly into the spine via a port under the skin and eliminates the difficulty of getting it across blood-brain barrier. Some chemo drugs will be given through this while others will go through the Broviac central line. The treatments will also likely include focal radiation.

Intensive treatments seem like they would last in cycles covering the next six months or so. Lighter rounds that are administered at home would occupy the next six months.

As for how he's doing right now, he's great. I don't think he's ever been so entertained and has rarely had such a large, willing crowd to provide it. He's happy, laughing, etc. it's been a good week.

And in case you haven't had enough, here's another picture.

Wednesday, March 14, 2012

Visitors from Michigan

March 12, 2012. Mother, Daddy, and the girls arrived today (Mother and Daddy = Micah's parents; Mom and Dad = Katy's parents). They drove all night, went through Canada, and hit a skunk along the road! I'm glad they made it safely. It is so good to have them here. They get along with the LaPierres great. The girls have been really helpful in the kitchen and everyone seems to be in a good mood and amiable.

What's even better is that Emmett was in a good mood today. He was happy, playful, laughing, and generally a joy to be around. The weather was amazing! (another tender mercy). It was 71.6 degrees F today and we spent the afternoon at Horn Pond. It was so much fun to walk around, be outside, feed the ducks, and just enjoy the beautiful world that Heavenly Father's created for us. Emmett has always loved the outdoors, and he probably had more time outside today than he has had in any one day for months. Prior to returning to the hospital, this was a perfect, amazing day for him to have. What made it even better is that more family was here to enjoy it. Many thanks for yet another tender mercy.

Cassandra got here at 6 pm and Mother and Daddy picked her up at the airport. We had spaghetti for dinner with cake and homemade almond joy ice cream for Cassandra's birthday. Emmett blew out all of her candles twice! When she pulled out a candle and put the bottom near his face for him to lick, he blew on the bottom side too. Finally he realized there was something sweet on it. After he licked it, he put it back in the cake in the exact spot it came from...then after a minute, pulled it out again to lick. He repeated this several times! What a joy!

We pray for another great day tomorrow. I hope things go well for Emmett. They canceled the MRI for tomorrow because the surgeon hadn't had a chance to review his records yet (it's anticipated that the surgeon will give specifics on what sequence of images to take during the MRI, and the doctor doesn't want to have to repeat it again later). Today was a great day, a forever day -- I hope we have another one tomorrow...and another, and another...