Saturday, May 26, 2012

Video Heaven

My sister's in town and she had a bunch of videos on her computer and I couldn't believe how good Emmett looked after his first surgery! These are all between Emergency Surgery #1 (in ABQ) and leaving for Dana Farber 15 days later. Can't wait to get him all cured up and feeling well and running around like a champ again!


At the Drive-In...later, he even had a bowl of popcorn in there with him that he was munching on



I just love his outfit in this one...or lack of





the very next day after his very first emergency surgery...look at him standing!!










 




Thursday, May 24, 2012

A few of my favorite things...

I just wanted to do a post of some of Emmett's favorite things at the Children's Hospital. More often than not, he likes to be out of his room-especially when he's feeling well. When doctors or nurses can't find us in our room, there's a good chance we're at one of these places. During the first round of chemo (when the hospital was still new) Emmett was obsessed with the elevators. Heaven forbid he actually like toys like a normal kid. The doctors would ask how much pain we thought he was in and it would be hard for us to say. We'd tell them that he can be crying and fussy and seem miserable, but then we take him out to the hall/elevators and he's much better and happier. One of the doctors called it 'the elevator effect.' He still loves them, but not as much and I didn't get a picture of them, but there should be. We have spent hours roaming the hospital and have discovered lots of little things. I didn't realize we had found so much entertainment until I started posting and there are still a few more places I can think of.
There's a CVS in the lobby and once we let Emmett pick something out in the candy aisle.  Now, every time he goes near the lobby he signs candy and points to the store... and usually succeeds in getting us to buy him a new bag of  'pops' (dum dums).  He hardly eats them, but he likes to carry them around unwrapped and they get pretty fuzzy and nasty and full of lion's fur, so they need to be rotated fairly regularly.

This was a new discovery this last week! It's by the basketball court and there's a soda and a candy machine and then one exactly like this.  He always got excited to look in the machines and press the buttons, but once we actually bought something from it, he was in love!  'You mean, I just push buttons and candy falls out?!?!'  Micah was even starving enough to try this machine once and Emmett loved that hot food just dropped out of the machine!  How amazing!

When Micah was gone, I had to take Emmett into the clinic myself one day and his counts were unexpectedly low and we ended up having to wait a bit for results and then for a transfusion.  To entertain him, we were playing by the elevators right outside the Jimmy Fund Clinic and then we saw these things.  I rummaged through my purse and started cursing that I never use cash and scrounged up a nickels and dimes.  He had fun feeding the dinosaur and now I try to make sure we have some loose change to take with us to the hospital so we can add this guy to our list of things to do.

We didn't discover this right away, but there's a playground in a little crevice between the buildings and there's a passage way to it from the gardens.  Emmett likes to throw balls (and lion) down the slides and climb as far as his IV pole lets him
This is a totally random thing in the lobby.  It's kind of a holographic butterfly and changes from a red light to a blue light when you touch the button.  For a while, Emmett could hardly contain himself when he got off the elevators until he could touch it!  Then he would move on pretty quickly to the next thing.  (I miss his bed head;  he used to have the most amazing hair when he woke up in the morning!)

This is a medical records robot.  It is the coolest thing.  Micah told me there were robots in the hospital when we first got there and I thought he was crazy, but made it my goal to see one when he insisted he'd seen a few.  They go around to the nurses' stations periodically and someone puts a stack of papers in the back, then it moves on.  Despite probably 100 different types of machines and alarms that beep in the hospital, Emmett recognizes this guy's beep.  This last weekend, two different times, he was in the room totally involved in something else and would hear the faint beep from this guy and start freaking out and pointing out the door, wanting to go into the hall and find him!  (Don't judge-I'm often still in my PJs til lunch)


Sometimes they get stuck; they aren't the brightest robots.  One time he was stuck at double doors (usually they have sensors and RF communication and can open doors and call elevators without pushing any buttons, which is kind of creepy) so Emmett and I kept trying to open the door and get him to move again. During this, 2 hospital staff walked by and tried to hold the other door open, too, to help it (thinking we were being good Samaritans).  After 5 seconds, they gave up and told us we really didn't need to worry about him.  That's when I told him we weren't really worried about him getting to be where he needed to be;  we just wanted him to move!  We had nothing better to do and this was our entertainment for the morning!  Fun Fact:  on the back there are a list of DO'S and DON'Ts.  One DON'T is don't touch the robot (so I hope no one from the hospital sees this picture) but the one that always makes me laugh is the DON'T "put me in a closet or stairwell".  HA...wonder how many times that's been done?


This random fish is in the hallway when you go from Children's Hospital over to Dana Farber's Jimmy Fund Clinic.  His love for fish started with goldfish crackers and now he's started to associate that with other fish, I guess!  He always puts his hand in its mouth.  I like to ask him where his eyes are-which he always gets right, then ask where its hands are-that kind of stumps him usually ;)

My parents live near the high school so we see lots of big yellow school buses that Emmett started to get excited about.  One day in the hall, he started saying "buh!  buh!" (which of course means bus) and I looked out and sure enough you could see all the shuttle buses parked at the curb.  I was surprised that he recognized them even though they weren't bright yellow and massive

Children's Hospital goes the extra mile and has the food trays delivered by train robots!  They are so cool!  We'd seen one or 2 on our floor before, but they are hard to catch.  One day I had the genius idea to go down to the cafeteria during meal times and we saw bunches of them!  Emmett LOVES them and the trains, along with 'bah' (ball), are his top two favorites right now. 

(Not my most flattering video and there's something stuck in my tooth obviously, but Emmett's so cute and excited that I had to post it anyways)



Emmett is in love with this basketball court near the playground.  He often wakes up first thing in the morning and asks for 'bah' and wants his ball and then wants to go out to the basketball court.


video


Micah started a new game-instead of just shooting hoops, he showed Emmett how high he could throw his little nerf ball-and landed it on the roof the very first time.  So this is Emmett pointing up to his lost ball.  He was actually pretty impressed!  Micah went and bought him a new ball and then did the same thing the next day;  luckily that one blew off the roof the next day and we found it under the bushes in the garden.  Then he did it with another ball and we have yet to see that one so we've lost 2 balls so far.  I think we're done with that game and we'll stick to just shooting baskets.  

     Oh hospital life, you are unique.  When we are all through this, we may look back at these things and miss them.  For now, they bring a little smile and distraction to our long hospital stays.  It's amazing to us that despite the fact that it's the hospital, it becomes very familiar and has a homey feeling to it.  
     At the beginning of one of our admissions, there wasn't room on our regular floor, so they put us in a random corner of the hospital.  I didn't want to be offensive to our nurse there, but I tried to ask if they would move us back up to 'our' floor when a bed opened up.  When she said probably not, I felt a little sad.  It made me feel better when the doctor said otherwise and within a day or 2, we were moved back up to our regular floor.  Oddly enough, it kind of felt like we were going home-back to nurses and staff and familiar faces and places.  
     About a month ago, we had an outpatient appointment at the clinic and afterwards, since we were already in the same elevators, we went up to our floor. I was surprised how excited Emmett was!  He smiled as soon as we got out of the elevator and started pointing where he wanted to go.  When we came around the corner, one of our favorite nurses was coming up the hall and Emmett smiled and pointed to her, as he recognized her.  He was excited to see the toy cars he likes to ride in, parked outside of patients rooms.  He kept pointing into the kitchen where he'd made microwave popcorn with Micah a few nights before.  He clearly feels comfortable there, despite everything he's gone through at the hospital.
     As we are on the radiation portion of the protocol, we've been going to MGH for proton radiation this week as an outpatient.  Next week we will be admitted as Emmett starts Week 7 of chemo (which should have been this week but his counts have been too low to start again). I'm a little sad/scared to be somewhere new and into the unknown again.  We could have stayed at the Children's Hospital and been transported back and forth by ambulance daily, which was tempting, but just too much.  Not necessarily what's best for Emmett to have to sit in traffic in a carseat and be woken up even earlier to get transported to appointments and deal with that hassle. 
     I guess I'm saying I hope these next 5 weeks we find our own routine again and things that make Emmett happy and great staff and fun things like the robots and that we get to a point that we feel 'at home' there, too.  So far, Emmett is really impressed with MGH's escalators, so we're off to a good start!



Tuesday, May 22, 2012

Look at this!

A few different friends have shared with us their efforts to support Emmett and we thought we'd let you all have a peak, too, in case you'd like to join in!  We're continually amazed at the support and love we feel from so many people.

Shave it for the Lion     (ABQ)                          
What:  A Hair Shaving Event with food for participants (at least I think so!)
When: Saturday (May 26th) from 12-4  
Where: 6300 San Mateo Boulevard Northeast Albuquerque, NM 87109

http://www.facebook.com/events/323261581078112/
http://www.facebook.com/ShaveItForTheLion
Shave it for the Lion


The Crane Project
One friend wants to make 1,000 cranes herself and collect donations in exchange for the cranes. She made a special crane mobile already for Emmett that is beautiful


http://www.facebook.com/permalink.php?story_fbid=115069508628916&id=100003776033528
Jasmine Eric Capener













The Buzz Off (Boston)
This is an annual event where people get sponsors to shave their head at a big event at the Patriot's Gillette Stadium on June 3rd.  Our friend heard about it and wanted to do it;  that night he heard about Emmett's diagnosis for the first time and committed to do it in honor of Emmett...and he hasn't cut his hair since!


https://www.firstgiving.com/fundraiser/philpotvin/kidscancerbuzz-off



More to come on the start of radiation later.... but for fun right now a video from a few weeks ago:



Monday, May 21, 2012

Finishing up Chemo Round 2

          On May 8th we'd been home four days when Emmett's fever started.  He scored high again the morning of the 9th so we brought him into the Jimmy Fund Clinic.  And then he showed no fever.  But we got admitted anyway because his ANC was below 500 which is neutropenic (meaning barely any immune system).  His red blood cells were also low enough to require a transfusion in the clinic while we waited for admission to the hospital.  Our normal floor was pretty full, but the clinic sent us over anyway so we spent a few hours in the treatment room before we finally arrived at our home away from home....away from home (NM). 
          The first day or two in the hospital we thought we were better off than last time as far as pain was concerned.  Whenever we said we didn't think his mucositis was as bad this time, Dr. Kieran replied 'yet.'  He was the attending on call over the weekend (which are always pretty quiet), so we had a lot of opportunities to talk to him about AT/RT and his research and side effects and all that stuff. Emmett started to be uncomfortable Saturday and that's the first time we requested a little morphine.  Dr. Kieran's advice was that the pain's going to get a lot worse before it gets any better: "we know what we've done to him with the chemo treatment and we know the side effects that are coming...we should try to be responsible and be humane and help him get through the side effects with as little pain as possible...sure, no one wants to have their baby on a continuous morphine drip, but you just need to decide how uncomfortable you want your child to be"...and then he tried really hard to hide a smile.  This made us laugh -- doctors are usually so serious and it catches you off guard when they make a sarcastic comment and show some personality.  We had to agree with his perspective, and by the end of the evening, we had a PCA on order.
          A continuous morphine pump, called a patient controlled analgesic (PCA) infuses a set amount of morphine each hour as determined by the "pain team".  The PCA also has a button the nurse can press to give Emmett an extra "kick" of morphine as needed (the "kick" button can only be pressed once every 10 minutes).  Supposedly over the course of a day your child actually ends up getting less morphine with a PCA because the pain never gets out of control like it would if he only got it when the parents or the nurse thought he looked miserable.     
          We're glad we ordered the PCA as early as we did because Dr. Kieran was spot on, as usual.  This round ended up being significantly worse than the first.  Last time he didn't get nauseous (but he also didn't eat anything for an entire week), but this 2nd round had a new drug, plus Emmett is now on a feeding tube.  He has been throwing up a bit.  Not constantly, but he's been put on multiple supplements, which seem to upset his stomach pretty quickly.  Even after he's thrown up, he coughs and gags rather violently at times, which seems to be choking or gagging on mucous that's stuck in his throat from the mucositis.  (Luckily one of the nurses' reflexes includes sitting Emmett up and getting lion out of the way all in one motion to keep lion from being a casualty;  even so, lion's been through a lot and has found himself in the washing machine often).
          Despite moments of happiness or a fleeting smile, Emmett is pretty miserable.  It makes us thrilled to see personality come out at all.  Repeating a word, wanting to sit up, asking to go play ball, a single smile, asking for "Pooh" or anything simple has become a treasured moment during these fever weeks.

Pictures from the last 2-3 weeks:
Emmett found a razor in the toiletries bag, then handed Micah the shaving cream!  I don't think he's really seen Micah shave that many times, but somehow he sure knew what to do with it! 
There's hardly enough room on this guy's chest for all the EKG leads
You can't really tell from this picture, but mops & brooms are one of Emmett's favorite things, so you can imagine how he feels about a motorized mop! Once in a while, it gets left in the hall unmanned and that makes Emmett VERY excited

He woke up with a black eye one morning :(  The vomiting gets pretty violent at times.
No surprise that his platelets were low and he needed a transfusion that day.
For Round 2, he ended up with 4 transfusions: 2 RBCs & 2 Platelets


There are musical stairs near the lobby.  Emmett was tethered to his IV pole, but was happy to sit on the top step and kick his legs to trigger the sensor

It's been a rough few weeks, but this weekend was much better. 
We were glad to have a few good days before starting radiation. (Post with info on that coming soon.)

Monday, May 14, 2012

Miracles

One of the things we've continued to do since Emmett's treatment began is to record the miracles we've witnessed along the way.  Since his very first surgery, we've often felt the hand of God and the strengthening support of guardian angels.  Over the past few weeks we've collected a list of miracles, small and large, that we wanted to share.

Emmett's left arm has been weak ever since his first surgery back in New Mexico.  Even before the surgery we noted that he was using his left hand less, and it had started to look disabled/handicapped the way he was carrying it, for lack of a better description.  He could grab things between his thumb and index finger, but the rest of the fingers were completely limp. There was little change after his first surgery in Boston.  Prior to the second Boston surgery, his left arm went completely limp at his side -- no finger movement, no wrist movement, no arm movement.  After the second surgery his arm remained limp, and the surgeon indicated she didn't know how much function she expected to return-only time would tell.  Gradually, as we made our way through the first round of chemo, he started to regain gross movement in his arm!  And then, about two weeks ago we noted a flick of his wrist!  How exciting!  And his arm and wrist control have continued to improve since (though they still have a long way to go).  We consider this a miracle, and pray the fingers are next!

Then last week another MRI was conducted at Massachusetts General Hospital in preparation for Emmett's proton radiation therapy.  The results showed that the tumor had shrunk significantly since Emmett's 4/20 MRI at Children's Hospital!  The doctors had not anticipated seeing much reduction in a period of just three weeks -- we're glad they were pleasantly surprised.   The take away is that Emmett is having a good response to the chemotherapy.  We count that as another miracle!

Another subject we haven't blogged much about are Emmett's lumbar punctures (LPs).  Lumbar punctures allow the doctors to do two things: test Emmett's cerebral spinal fluid (CSF) for tumor cells and inject intrathecal chemotherapy into his brain/spine to treat any malignant cells.  It's very important to keep the cancer from spreading to Emmett's brain because they won't do cranial radiation on children under the age of three, and radiation is a key element in the Dana Farber protocol.  Emmett's initial lumbar puncture in New Mexico came back clear.  After his most recent spinal surgery (the one where the tumor had regrown in 10 days and connected itself to the spinal cord), cancerous cells were identified in his spinal fluid.  This made us very nervous.  The doctors say surgery "stirs the pot" and can cause false-positive readings for several weeks after surgery.  The next week, Emmett's LP again came back positive for malignant cells in his CSF, and then again the week after.  Our hearts were racing!  The next week, however, the results came back clear!  And the week after, the LP was again clear!  Hopefully this means that the malignant cells seen initially were indeed a result of the surgery and not indicative of a new tumor in his brain!  We count the clear LPs as a miracle!

Another tender mercy we experienced this week was connecting with another family with a boy who also had ATRT in his bracial plexus.  His story is eerily similar to Emmett's.  The tumor started in his left brachial plexus and then migrated to his spine and became involved with two vertebrae.  He underwent treatment, the tumor responded well, and he's now been in remission for a year and a half!  What amazing, hopeful, inspiring news!  ATRT is so rare, and brachial plexus ATRT is so extremely rare that we never imagined we'd find another family that's experienced this particular cancer, much less with a child that's a long-term survivor.  Connecting with a family who has been down our road with an inspiring outcome is without question a tender mercy from the Lord!

Perhaps our biggest fear over the past month has been receiving the results of the genetic testing.  If Emmett's cancer is genetic the medical implications are huge: chances of relapse increase; susceptibility to future cancers increase; chances of long-term survival decrease.  The emotional implications are also devastating.  Was the mutation inherited from a parent or was it spontaneous?  If inherited, did Emmett's cancer come from "me"?  What are the chances future children will have this same cancer?  Would it be fair/ethical to subject a future child to that chance, however small?  Could we ever allow ourselves to have more children, knowing our family could go through this all over again?  If we are unable to have more children, and if we lose Emmett, how will we ever find happiness in life? (Not in the sense of replacing him, but being able to move on with regular life some day)

Well, we received the results of the genetic testing on Wednesday.  Emmett's cancer is not genetic!!!!!  Halleluiah!  This means that Emmett did not get this cancer from either of us! It was just a spontaneous fluke mutation. It also means that if we get rid of his tumor, he shouldn't be any more susceptible to future cancers than anyone else!  Emmett doesn't have to be the end of our story!  We could have more children if we wanted. What a wonderful anniversary gift from a loving Father in Heaven!  We've cried many tears in the last two months...tears of shock, tears of disbelief, tears of frustration, anger, and despair...this is the first time we've cried tears of joy.  And how sweet and joyous they are!

Thanks be to God for this marvelous gift!  And thanks be to everyone who has prayed, fasted, and exercised faith to open the windows of heaven and secure for our family the Lord's tender mercies and miracles at this most difficult time!

Wednesday, May 9, 2012

His Last Scheduled Surgery

Last Monday, April 30th, Emmett underwent what we hope will be his last surgery! The surgeon placed a Rickham reservoir in his head...not a shunt, but something similar. This allows them to do intrathecal chemo (IC) into his brain and spine from the top and not just from the bottom through lumbar punctures.  This should make IC more effective while also requiring fewer sedations.   We're hoping this was his last visit to the OR.  He recovered well and had a lot of good days, despite spending the week in the hospital for his chemo infusions.

Here's the final product (we have yet to take the bandage off, so we're not sure how noticeable it will be).



Sunday afternoon Emmett was climbing up this rock. He loves being outside still when he's feeling well...

...and then decided it was a good spot for a nap ;)

Friends from AZ came to visit for the weekend! It was a breath of fresh air to see some friends from home.


Emmett had his first bath in probably a month tonight (he has been sponge bathed...which ironically involves no sponges).  He loved it once I let the water run continuously.  I just taped his lines up on his shoulder and prayed he didn't splash too much

Just wanted to get something up quickly since it's been so long since we've posted -- we'll add more details later.  We expect Emmett will be back in the hospital with a fever soon.

Wednesday, May 2, 2012

Ways to Help

Over the past two months we have been completely overwhelmed by the outpouring of love and support from so many people wanting to help Emmett in any way they can.  The letters, packages, gifts, meals, donations, and other acts of service have been incredibly humbling.  Words can't express the gratitude and love we feel for each and every one of you.

One reoccurring message we keep hearing from many of you is "we wish we could do more".  It seems everyone wants something they can personally do to help little Emmett.  Now that we've been in the trenches awhile we're better equipped to answer this question than we were a month ago, and we thought it appropriate to put together a list of things everyone across the country can do to help Emmett, regardless of their location.

Send cranes of faith
http://ourbravelittlelion.blogspot.com/2012/03/cranes.html
http://en.wikipedia.org/wiki/Thousand_origami_cranes

Donate blood
http://www.redcrossblood.org/donating-blood

Participate in childhood cancer research fundraisers
http://www.alexslemonade.org/ (national)
http://www.curesearchwalk.org/htmlcontent.asp?cid=102631 (Boston and Michigan events available)

Dana Farber / Jimmy Fund fundraisers

http://www.jimmyfund.org/eve/event/cookies-for-kids-cancer/ (national)
http://www.jimmyfund.org/eve/event/marathon-and-running-programs/ (national)
http://www.jimmyfund.org/eve/event/scooper-bowl/default.html (Boston Scooperbowl event)

Children's Hospital Boston fundraisers
http://giving.childrenshospital.org/NetCommunity/Page.aspx?pid=1489 (mostly Boston events)
http://giving.childrenshospital.org/netcommunity/page.aspx?pid=1546 (national)

Support local charities/hospitals/events

Ronald McDonald house, local hospital fundraisers, volunteer, etc

Locks of Love
http://www.locksoflove.org/

In addition to the above nationwide ideas, there are a few more local options available for those looking for more ways to help.

Meals
Occasional meals during our hospital stays have been helpful (we emphasize 'occasional' because by no means are meals needed every day).  Days when Micah is back in NM will also provide opportunities for occasional meals. (Meal calendars can be viewed here.)

Local Transportation
As previously mentioned on our "How to Help" site, a list volunteers willing to help with local transportation is helpful, especially when Micah commutes back to NM.  We've compiled a list of volunteers to date (thank you!).  We'll continue to collect this information for future use.

We'll update our "How to Help" page soon with this information.  Thank you all for everything you're doing, wherever you are, to support children and families suffering through cancer.  We love you!