Monday, January 28, 2013

Dee's Back!

Though we've alluded to it in the last few posts, this post is to officially declare that Destiny is back in Boston.  We're so behind on blogging, we didn't even blog Destiny's goodbye until after she was back in town!  But we're doing our best to repent and catch up.

Want to get to know Destiny?  Check out this video.

Destiny is the sweetest, kindest girl you'll ever meet.  She always has a smile on her face and a kind word to say.  I've never heard her complain or speak negatively of anyone or anything.  She has a special spirit that lifts and inspires everyone around her.  She has strengthened and inspired our family in more ways than I can tell.  We thought we'd let her lift you too.

It breaks our hearts to share that the reason Destiny's back is because she got sick again.  And now the doctors are putting her through a bone marrow transplant.  Destiny has a twin brother Brandon and it just so happens that he's a perfect bone marrow match.  So he came to Boston with her to donate his bone marrow for her transplant!  I don't know of a kinder, more Christlike thing that two siblings could do for one another.  They are perhaps the bravest, strongest 12-year-olds I've ever met.  Their story just brings tears to my eyes.  And the cancer world is full of stories like theirs.  I know there's a lot of bad in the world today, but I can testify that there's a lot of good in it too -- we see it every day.

Today is day zero for Destiny, the day she receives her new bone marrow.  Last week she went through radiation and intense chemotherapy to destroy all of her own bone marrow.  Then today Brandon had a trip to the OR to donate his.  I got a chance to see him after he recovered from the anesthesia.  Does it look he just went through an intense procedure to extract his marrow?  This is one tough kid!  I love his smile.

After a few hours of preparation the blood cells are ready to be infused into Destiny.  As I write this post she is receiving her new blood.  We pray that her body accepts the new cells and that she's on her way to a speedy recovery!

Please keep their family in your prayers as they walk this difficult path.

Pleading for Direction

One focus of my personal scripture study since Emmett was diagnosed has been the New Testament.  Reading accounts of the many miracles and healings performed by the Savior has been especially comforting.  I've created my own "red letter" edition by marking the passages that apply to our current situation.  It will serve as a reference for years to come.

Lately I've been impressed with Luke 18.

In the beginning of the chapter the Lord shares the parable of the importuning widow (Luke 18:1-8).  In this story a widow comes to a judge requesting that he avenge a wrong committed against her.  Clearly she's been the subject of an injustice, however small, and she wants the judge to make it right.  He declines her initial petition, but eventually gives in "lest by her continual coming she weary me".  This is where the catchphrase "weary the Lord" comes from though the phrase itself never appears in the parable.  The message is clear -- keep knocking on the door, keep pleading your case before heaven and see what God will do.

One thing that makes this chapter so beautiful to me is the account at the end that serves as a testament to this principle.  As the Lord comes to Jericho, a blind beggar hears the multitude passing by.  When he learns that Jesus is with them, he cries out for help.  There were some in the multitude who rebuked the beggar telling him to hold his peace, but that only caused him to cry out even louder.  When Jesus eventually hears his cry, he causes him to be brought forth.  After a brief exchange, he heals him and commends him for his faith (Luke 18:35-43).

What would have happened if the blind man stopped pleading his case in the face of opposition, discouragement, and frustration?

How important it is for us to continue to plead Emmett's case before the Lord.  However thick the darkness that surrounds us, no matter the length of time we've been searching, we must continue to plead for an illuminating ray to show us the way, especially at this critical crossroads.  

We've had beams of light at decision points along the way.  And we see God's hand continuing to work in our lives day-to-day.  Let me share a recent example.

Out of the blue last Monday I got the sudden urge to print some sheet music and spend time practicing the piano.  I played piano growing up and even taught beginner piano lessons to earn money for my church mission, but I haven't had the desire to touch a piano since.  Katy was more than a little surprised to hear me playing scales and brushing up on Bach last week.  She's never seen me touch the piano in the six years we've known each other -- in all honestly I haven't touched one in 15 years...until last week.

A few days later Emmett's friend Destiny got back in town.  After becoming fast friends last fall, Destiny completed her treatment and went home to Alabama before the holidays.  Though it was extremely sad to see her go, we were so happy that she was at the end of treatment.  Unfortunately, she got sick again and had to return to Boston this month for a bone marrow transplant, one of the most difficult cancer treatments to go through.  We spent time visiting Destiny, her brother Brandon, and her mom at the Ronald McDonald house last weekend.

During our visit Destiny shared her preparations for spending months in the hospital.  She mentioned that one of the things she's always wanted to learn is how to play the piano.  She brought an electric keyboard with her from Alabama and hoped to teach herself while isolated in the hospital.  It instantly became clear to me why I had been inspired to start playing the piano earlier in the week.  And I'm happy to report that I had the humbling opportunity of teaching Destiny her first piano lesson on Friday.

There are many things I don't understand about Father in Heaven and his purposes, but I do know that he works in our lives, in the big and the small.  Whether it comes as a peaceful feeling, a burning in your bosom, or something as simple as a thought that comes to mind, I know that he can direct us, I know that he's mindful, and I know that he loves us.

And I know he will direct us in exactly what he wants for his precious Emmett who he loves so much (Luke 18:16).

Sunday, January 27, 2013

Inpatient...and a request

Emmett was admitted with a fever on Friday.  He had a diaper rash we wanted our doctors to check out, plus it looked like he might need platelets, so they scheduled us an appointment at the Jimmy Fund Clinic on Friday morning.  What would you know, when they measured his temperature he was running a slight fever, and with his blood counts so low it was an automatic admission.

Emmett has been down and slow all week, we think it's the combination a cold he's been fighting for weeks coupled with his last chemotherapy.  Normally he's active and playful for a few days after getting chemo before his counts come down, but this time he's been slow the whole time.  We're glad to be in the hospital where they can keep a close eye on him.  We'll probably be here a few more days.

As many of you know, we have some big appointments with other hospitals over the next few weeks that will significantly impact Emmett's treatment path.  Johns Hopkins is next week and Children's Hospital of Philadelphia the week after.  As February will be a pivotal juncture, we will be fasting and praying next Sunday (Feb 3rd) that God's path for Emmett will become clear as we meet with these doctors.  We invite everyone to remember our family in their prayers that day.

Thursday, January 24, 2013

Plum Island-Round 1 (August 15)

Every summer since I can remember, my dad's family gets a beach house at Plum Island for a week and we would go up for the day once or twice, since we live really close by.  This year was no exception.  We had been nervous to take Emmett to the beach because of his central line.  When we had taken him the year before (at 11 months old), he had liked getting wet so I figured it might be easier to avoid the whole issue.  Even if he didn't want to get wet, I was worried about sand getting on the caps or under the sterile dressing....sand can be fun for castles but really is such a pain for trying to stay clean!  Since we wanted to visit my aunt and uncles, we decided to give the beach a try.  Plus, how can you be so close to the beach for a whole summer and not go?  (Being in not only a landlocked state, but also a desert, we have been quite beach deprived!)  Like I said, Emmett hadn't been at all for a year but I swear that when we got out of the car, he knew the beach was up over the hill and recognized where we were.  I could be wrong, but he seemed to know where he was!

It was especially fun because I'd never spent the night before, but this time we were able to!  It was like a mini vacation for us.  Emmett loved the beach and didn't want anything to do with the water, but liked sand castles.  We put lots of cling wrap and tape around his central line and everything stayed clean.  (Well, maybe we wrapped him a little too well because he got sweaty and then the sterile dressing started to peel off anyways underneath it all! But that isn't too hard to fix....I was more worried about gritty sand and salt water getting in).

Unfortunately, we brought so much stuff, but the one thing we forgot was our camera.  We did get a few pics on the iPad, which is another thing I wouldn't put near sand.  We had a great visit with family, great food, a great sunny day and enjoyed our get away!  The only down side was that the next morning, he had an appointment with the visiting nurse at home. I tried to make the appointment as late in the day as possible, but that was 1 o'clock, so we didn't get to stay long.  

Before we had to leave, both my uncles put on their gear and
 hurried to find some sea creatures for Emmett

Emmett's sitting and watching and not one bit jealous of them being in the water.  
New England beaches are notorious for being cold.

They found a camo crab (some plant growing on its back), a hermit crab, a snail and 
another little crab.  It was quite the catch!
The bad news is that after hurrying home, the nurse tells us she could have come to the beach house! argh...  Didn't think to ask if that was part of their region....  The good news is that we did go up for dinner 1 or 2 more times and were able to visit some more and see the beach.  I'm so glad we made it because Emmett ended up loving it and his central line caused no problems.  We really enjoyed our time with family!  Thanks for taking such good care of us!

Bye D'y!

Emmett had outpatient chemo the whole week of Halloween.  On Tuesday after we'd been at the clinic, we went up to his floor, 9N, to say hi and Emmett was pretty tired by the time we left.  It was definitely naptime after a long day.  Micah, who's usually the more antsy one and wanting to leave before rush hour traffic hits, kept suggesting we stop and see Destiny, so we did. He said we could just stop in and say hi real quick and see when would be a better time to come back later in the week. When we got to the door, we knocked quietly and when they opened the door, at first we heard that Destiny was sleeping and we said we'd come back another time.  When she saw it was Emmett, though, her mom said "she's awake!"   She'd been pretty sleepy all afternoon and so didn't want nurses bugging her, but was happy to see Emmett!

I'm so glad we ended up stopping by.  We thought she'd be there the rest of the week at least, but turns out she was done with treatment and was headed back to Alabama in the morning and we would have totally missed saying goodby to her if we hadn't stopped in Tuesday afternoon!  So we visited for a little bit, and then came back the next morning before they took off.  Emmett was in his Halloween costume, ready for trick or treating, and Destiny was all dressed up in pink!  We thought it was pretty neat because her and her mom (and 2 nurses and 2 pilots) got to fly in a private jet (because her immune system is in jeopardy and she can't chance being in a car and far away from hospitals if she starts to get a fever; she has to have an antibiotic administered within an hour)  back to Alabama (roll tide!). Destiny said it's not as fun as it sounds.  She has to be strapped to a stretcher the whole time and can't move around.

 Here's Emmett playing catch with Lion-look how happy he is!
 Giving a hug goodbye
 Destiny gave him her vitamins and Emmett still has them ;)
(he's always mooching balloons and toys from her and she's too nice and lets him)
We love Destiny!  -or D'y (Dee) as Emmett calls her. She's the nicest girl ever!

Beeee T'cks!!! (aka very Big Trucks!)

This is from back in October. Sean had told us we had to come up to his 'office' because he has a power washing company and right next to him is a Komatsu dealership and they bring their trucks back and forth to his place all the time to get them cleaned up. We had to cancel once because Emmett had a fever and we had to run to the ER, but we set up another day to go by. It was pretty neat to see how huge some of this equipment really is. Sean showed us all around their lot and they had TONS of humongous trucks.  Emmett, of course, was distracted by all the mud puddles, but he had a lot of fun looking at the trucks.  He always gets a little stage fright, though.  Sean had a key that went to any truck in the lot and they said Emmett could drive around any one of them he wanted.  He didn't want.  ;(  Some day he'll be kicking himself for that, but right now he mostly likes looking still. 

The 'delivery guy' pulled in while we were there.  This is the very nice, brand new cab that pulls the trailer to deliver all these huge trucks.  Emmett was brave enough to get up into it for a minute with Micah.  It was real pretty inside.  Sparkling clean leather and lights around the ceiling....
Sean's in-laws had been to Ireland and they brought back Irish tractors for Emmett! How cool! They do look a little bit different from American ones. And they put him on a special prayer roll while they were there. We were really touched at all their thoughtfulness.
We had a great little tour and have been meaning to go back again sometime!

Goodbye Erin

We have many, many posts that are long overdue!  We need to share about Emmett's buddy Little Will, about Emmett's favorite place (the "beach"), more about trucks, Emmett's friend Destiny, and much, much more.  But first we'll touch on a tender topic, Emmett's goodbye to Erin.

Erin was Emmett's very first nurse in Boston.  Not only did she take excellent care of Emmett that first admission after we came to Boston, but she also calmed the nerves of two parents who moved across the country in their continuing journey to find a cure for their son.

There are many reasons we love Erin, but one of them is that she reminds us so much of my sister Sammi!  She's cool, calm, collected, has long dark hair and is tons of fun!  Having someone who felt like family helped us feel that much more at home.  Another reason we love Erin is because it's easy to see how much she loves Emmett (she doesn't hide it well, and that's okay :).  Opening up to the nursing staff and allowing them to become like family has helped us emotionally and psychologically.  If there wasn't that mutual feeling of love and concern, the challenges we're going through would be that much greater.

Emmett doing his best not to smile.
Emmett and Erin roaming the halls with Little Will and Rosemary right behind!
Emmett took a liking to Erin very quickly.  As we recall, she's the very first person he played "fetch" with -- where he throws lion at someone whose attention he wants, then waits shyly until they bring him back.  Erin was always very patient and would play with Emmett as long as her schedule would allow.  Emmett also made up a sign for Erin, perhaps because he couldn't pronounce her name, or perhaps because she's so cool that she deserves her very own gang nurse sign ;)  To make the sign he turns his hand upside down, palm out.  And he usually accompanies it with a smile.


Unfortunately Erin took a new clinic job in the hospital.  Not that we can blame her, who wouldn't prefer working 9-5 with nights, weekends, and holidays off??  I guess nurses deserve lives too ;)

Our last planned admission with Erin was a tender time (we did end up having her one more time with f/n).  Completely unplanned Emmett and Erin were wearing matching clothes -- New England Patriots and Boston Red Sox!  We got lots of pictures and hugs that night, though Emmett wasn't exactly in the picture-taking mood -- he wanted to be down playing that night!



All these pictures and still only serious faces from Emmett!
Here's a small excerpt of what I wrote about Erin in my journal that night:

10/7/12  Another thing that happened today was our saying goodbye to Erin, our very first nurse at Children's (not including the OR nurses, etc).  When we got up to the floor we found her completely decked out in Patriots gear, and Emmett was completely decked out in Red Sox gear -- two different teams but with completely matching colors.  We had to get some pictures!  Erin was so excited we got up to the floor a few hours before she had to take off for the night.  She had visited us down on 6 the day before, but we were really glad to get to have her for our nurse one more time.  She's transitioning to a  clinic job that won't require her to work nights...I can't blame her at all, working hights would be so difficult.  Anyway, we got some pictures and Emmett was going crazy, just crazy, being on the floor.  He was lighting up everybody!  I can't over emphasize this.  He said "Jess" (who wasn't working) but did his sign for Erin at the same time.  He was running everywhere, seeing everyone, and just putting on "The Emmett Show".  I wish words could capture the way he captivates and connects with people, every one.  And Erin is no exception...

Erin is exactly the kind of nurse you want taking care of your precious child -- someone who cares about and loves him.  Not someone who's just collecting a paycheck, but someone who cares for and loves Emmett for the wonderful, amazing person and spirit that he is.  And I'm SOO glad that Erin was Emmett's first nurse, so glad that she got to be a part of his journey, a part of our journey, and that he got to be a part of hers.  God bless Erin!

After we got choked up saying goodbye we spoke for a few more minutes, than exchanged hugs again, than she took off...and she may have left the hospital floor we were on that night, but she hasn't left our life.  And won't!  Now that she's not our nurse maybe we can meet up at the zoo or something!

I am happy to report that we've been able to see Erin several times since our tearful goodbye.  Emmett did end up with fever and neutropenia a week or so later and we were lucky to have Erin her very last night on 9 Erin was Emmett's very first nurse, and Emmett was Erin's very last patient.  Katy's sisters were around that night so we were able to go out and get Erin a Curious George shirt and some flowers (Erin always wears the brightest, fun shirts so we added to her collection).

What ended up being our last night with Erin.
And we've been able to see Erin a few times since our goodbye.  Just before Thanksgiving she and her boyfriend took a trip to D.C. and they brought back a toy airplane for Emmett from the Smithsonian.  She gave it to us on 11/20 while Emmett was in for an MRI.  We gave it to him when he woke up from anesthesia and he loved it!  Normally it takes him a while to wake up but he came to quickly with a new toy to play with.  Hopefully it will warm up soon so we can all wear our Curious George shirts and meet up at the zoo!

We love you Erin!  Thanks!  

Saturday, January 19, 2013

Another Medical Update

We thought it time for another medical update.

We continue working to get second opinions from other hospitals.  In contrast to the via-email second opinions we got previously through our oncologist, this time we're visiting each hospital in person and asking the question, "what would you do if we transferred here?"  (We have no intention of actually transferring care at this point, we just want to know what they would do if Emmett was their patient).  We already got a second opinion from MGH earlier this month.  Their neurosurgeons were uncomfortable with another surgery, and given the PET/CT, their recommendation is to do a few more rounds of maintenance chemotherapy and then monitor things closely.  They say though not conclusive, the PET/CT is a good indication that the tumor isn't active and perhaps dead.  They suggested this may be the reason the tumor doesn't continue to shrink with each additional treatment.  And if the tumor's dead or inactive, high dose chemotherapy may wreak significant collateral damage on Emmett's body with no appreciable benefit.  They referenced studies that show going to transplant with bulk tumor does not increase one's chances of survival.  Simply stated, the (questionable) benefit of any combined surgery / stem cell treatment path (as suggested by Dana Farber) doesn't outweigh the risks and debilitation, in their opinion.

We have an appointment for our consultation at Johns Hopkins Feb 4-5 (MRI the 4th, consultation the 5th).  Hopkins is the place our Dana Farber team wants us to go for surgery (Dr. Allan Belzberg).  In conjunction with our trip to Hopkins we'll stop by Children's Hospital of Philadelphia to hear their thoughts on Emmett's case.

In the meantime, they've continued maintenance chemotherapy here in Boston to "keep things at bay".  Emmett is three days into the week 36 chemo infusions on the Dana Farber modified IRS-III protocol.  Because the clinic is closed over the weekend we'll go in to 9 North today and tomorrow to receive his chemotherapy.  Emmett never complains about a trip to 9 North!  We stopped by on Thursday and he was so excited to see Jess, Laura, and the rest of the gang.  As we came out of the elevator and started walking down the hall, Emmett started calling "Jess, whre aaar yoouu?  Jess, whar ore yooo?" over and over.  Luckily Jess was in the hall at the time and heard his calling so he didn't have to start searching every room.  After a big hug Emmett jumped down on the floor, ripped off his hat and his coat (as best as he can), and ran straight for the dirty toy bin (which was full of trucks).  Coming to 9 North really is coming home to Emmett.

We'll see what the next few weeks bring.  We continue to pray for revelation and inspiration to be upon the doctors considering Emmett's case, and for the Lord's peace and comfort to be upon us as we work to decide which path is best for Emmett.

Emmett and Destiny playing in the clinic yesterday.
This video was from the next day...and unfortunately Jess wasn't around :(

Monday, January 7, 2013

Bath Time

This is probably back in October now, but I thought I'd still post it.  The rooms only have showers and while we can sponge bathe Emmett, sometimes a good soak is still best.  So we use the pink tubs.  When we first got here in March, Emmett would curl up his legs and insist on having his feet in the 'tub,' too, which looks kind of funny, and was a tight fit, but one of the most entertaining things of the day!  Even though he wasn't doing it for this bath, he still insisted on having his now longer legs curled up so he could get his feet in the tub, too, when we were there over Christmas.  It makes the nurses laugh when they see him bathing like this.

This was a long bath.  He'd had a diaper rash that looked pretty sore, so we gave him an oatmeal bath to soak in.  I left it on too long and it dried a little too much, so I put him in a tub of water to soak it off.  He hung out like this for probably an hour!  He had an iPad in front of him and thought life was great!


This is also from back in October. We bumped into our friend Richi & his family in clinic one day, the Richi who made him a Choo-Choo!  and that helped him Trick-or-Treat.

We were both waiting for labs, so we had time to kill, so they had a chance to play together for a while, which was nice!  Usually we see friends in clinic, but only briefly as we overlap in the waiting area.  Richi loves little kids and Emmett was in a good mood (usually he's fickle and does his own thing) and enjoyed playing together in the clinic.

Friday, January 4, 2013

9 North

9 North is where Emmett usually stays when he's admitted to the hospital. It's not the normal oncology floor, but the Neurology floor. There are a lot of epilepsy patients or any patient that's had brain surgery stays there. They opt to put the brain tumor patients here because the staff are all specially trained to pick up on neurological deficits.  For example, they routinely check his eyes to see if they dilate correctly, but on other floors they don't normally do this. 
During one of our 2nd admission to Children's here in Boston (Emergency Surgery followed with his first round of chemo), one of my dear friends, Allye, came to visit. She had been through a cancer battle with her sweet mother and she told me that the nurses will become like your family. I didn't believe her, but smiled anyway.

Emmett quickly made himself at home here:
This past week he made this incredibly brave face for the first time instead of crying ;)

Emmett thinks (knows?) he owns the halls
Our nurse friends visit us when we're on other floors...
turn music on for us and have dance parties;

are patient, no matter how many times a day Emmett
tangles his tubes and make the pumps beep;
come visit (even if he's not their patient for the shift) at 1 am and are surprised
and disappointed to find Emmett asleep (he has quite the reputation for being a night owl)...
may have even brought us a delicious dinner....
accommodate Emmett wherever he is, whatever mood he's in and
tolerate whatever he's wearing (or not wearing; Emmett is also single
handedly trying to bring back moon boots!)....
help him hoard his favorite toys...
come and chat with mom and dad and make us smile;
have brought books from home for me to read;
they don't mind that Emmett never makes his bed;
hurry him out to the hall to see the pneumatic
tubes arrive (a big obsession for a few weeks);
let him play in the food carts;
they even roam the halls with him and keep him from tripping on his tangle
of tubes; (Emmett always whines when his friends have to go back to work;
 he seriously thinks everyone's purpose is to sit and entertain him)

Most of all, the nurses take great care of him (and us)!
We've never met a 9N nurse we didn't like!
I just wish we'd taken more pictures with them this past year.
Even the housekeeper is awesome!  She lets (encourages!) Emmett run over her feet with the lawnmower and will hop up and down like she's hurt.  Here she is all dressed up because she was attending a luncheon for an award she got and she still let Emmett run over her nice dress shoes.

Obviously, I couldn't agree more, now. It didn't take long to feel
like Emmett has a whole new bunch of aunts!

...and I think it might be safe to say that they love Emmett just as much, too!