Monday, April 30, 2012

Round Two

After enjoying a week off due to low blood counts, Emmett jumps back into the thick of his treatment protocol tomorrow.  He has a procedure to place an ommaya reservoir in his brain at noon.  This will allow chemotherapy to be put directly into his brain/spine without having to do a lumbar puncture each time.  The doctors consider this a minor procedure...but putting hardware into our child's head it seems pretty major to us.  Chemotherapy then starts on Tuesday and continues for the rest of the week.

The upside is that we've been through one cycle already we have a good idea of what the next three weeks hold.  The downside is that we know just how miserable Emmett's going to be which in some ways makes the second round worse than the first.

We're really grateful for the relaxing week we had as Emmett continued to recover from the first round.  Because it was a down week Micah took his first trip back to NM to work for a few days.  It was incredibly difficult to be away, but at the same time fulfilling to put 100% of his time and efforts into providing for our family for a couple days.  Sometimes the most important thing he can do for Emmett isn't necessarily being by his side.  It's so important to have means to pay for Emmett's medical care right now. 

Micah enjoyed visiting with friends and the young men from church during his short trip.  It's amazingly strengthening to talk to people who love, support, and empathize with you during a trial like this.  It's hard to describe, but knowing there are people out there who are praying with you, who are crying with you, and who would do anything in their power to help you somehow buoys you up and gives you strength to go on.  Even though there's not much anyone can do, just knowing they're there and how much they care helps you get through another day.  Many thanks all those who reached out to Micah with many kind gestures over the past few days!  The thoughts, notes, and conversations all meant so much...and the food wasn't bad either - he says he gained five pounds.  We love you!

After Micah arrived back in Boston Saturday we spent the rest of the weekend enjoying as much family time as possible.  Emmett especially enjoyed flying his new Pooh kite and a visit from his cousin Tyson!
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Thursday, April 26, 2012

A week 'vacation'


      Sorry we haven't put up his medical update this week and probably most of you think are thinking he had surgery and is on chemo again.  However, we went in Monday for his pre-op appointment. The visiting nurse had already been to the house that morning and taken blood draws.  When I got to Jimmy Fund, they told me his counts were incredibly low still/again & drew more blood to double check.  Sure enough, his counts were still low, so they cancelled everything for the week and told us to continue his daily shot (that we have to give him ourselves ;(  Micah surprised me and actually has experience in this department!??!  And all this time I thought I knew my husband) which helps his WBC come up faster.
      Wednesday we went back in (for the only procedure that wasn't cancelled) for his lumbar puncture.  Micah was gone so I had to go down by myself.  Luckily, I'd done Monday's appointment by myself and was able to drive around downtown and find my way and get through everything without him (although it is MUCH easier and nicer with him).  They did the LP, he recovered from sedation & had a major diaper explosion on the bed.  The nurse helped me clean him up & gave us some clean hospital clothes, then we were ready to go.  Having nothing to hurry home to, we took a walk to some of his favorite hospital spots (musical stairs, the candy store in the lobby/aka CVS, the basketball court) and were ready to head home when Dr. Mimi called and said his counts were coming up, but his hematocrit levels were low and they needed to do a transfusion.  So it ended up being a blessing that we didn't hurry home because I would have had to come right back.  She said they might come back up on their own, but he's below the level that they normal transfuse at & she wants him at his best so we can go ahead with his the operation & chemo next week.  So 4 hours later we were on our way home with Boston's rush hour traffic!
      He's been in great spirits today! We are keeping him somewhat isolated to make sure he doesn't pick up anything this weekend so we have no more delays and hopefully his counts have come back up so we can move forward with treatment.
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Plus Micah's home in Albuquerque tonight and what started out as having the YM swing by is opened up to anyone that wants to come by and have ice cream sundaes and say hi tonight is welcome to do so!

Tuesday, April 24, 2012

Our Cup Runneth O'er

Can you guess what Emmett received yesterday?

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Yes, he received his very own iPad!  It came as a gift from his friends and ward family.

But it didn't end there.  There was a package waiting for him at the post office, and what did it contain?  Yes, another iPad!  Another anonymous gift, from the "iPad Fairies" who love Emmett.

The first iPad came from our ward family back in New Mexico who we miss and love so much.  It was hand delivered by Emmett's friend Deanna who puts on a story hour Emmett loved to attend each week ("two little dicky birds sitting in a tree..."). We were literally speechless as he opened this gift.  Thank you all so much!  We wish we were there to give you a big hug!  Emmett especially loves the Lion on the back.

The other iPad - we have absolutely no idea where it came from.  The only message was that it came from people who love Emmett from across the country.  Whoever you are, we love you and thank you.

We struggled over the past 24 hours with how to blog this information...not wanting to diminish either of these gifts by mentioning them both.   Covering both iPads in one generic, non-specific thank-you post we decided against - and it would have been difficult considering they're different colors ;)

There are also many toys, quilts, and other gifts Emmett has received that all mean so much to us, though we haven't blogged about them all.  The iPads, however, represent such an overwhelming, concerted outpouring of love and care for Emmett from so many people across the country.  It touches us so deeply to know how many people love and care for Emmett, who want to help him experience a little less pain via digital distraction, who are rooting for him to win this fight against cancer.

today we have realized more than ever
SO MANY PEOPLE LOVE EMMETT!

We love you.  We thank you.  Two iPads will be especially helpful as Micah begins commuting back to New Mexico - Emmett will be able to keep in touch with "Da Da" much easier in airports and on planes with Wi-Fi and around the house if he let's Dad borrow one of his new toys.  Last week Emmett had a day  in the hospital where he only wanted Dad - before his procedure, after procedure, and that night Mom just couldn't cut it...he wanted Dad to hold him.  It will be hard having Dad away over the coming months...and having two iPads will make the distance a little bit shorter.  (This is especially timely as Micah makes his first trip back to New Mexico today.)  The chance that both iPads came on the same day and the day before Micah is leaves for the very first time is just another little miracle to us to make this easier. 

Again, thank you all, whoever you are, for all your love for our little Emmett!  He had wonderful, happy day yesterday after receiving his new toys.  Just watch!

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You can't imagine how grateful, humbled, and loved we feel as a family today...loved by so many people, everywhere.  You really can't imagine.

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Emmett quickly figured out that Uncle Cris left his iPad on his nightstand while he was at work. A few times he disappeared and this is where I found him. He won't have to sneak around anymore!!

Sunday, April 22, 2012

Bald Eagles

We by no means are adding these pictures for peer pressure....In fact, it is quite the opposite. When Micah mentioned he was going to be Emmett's Skull Buddy, we had no intention that anyone else would pick up on that. But when we check email here and there, we are always surprised to see a picture of a friend who has also given up their hair! We love adding them to the blog just for fun and for us to have all these pictures in one place.



For this one, I had to add both pictures, because I loved the bald old man look on a kid!

Friday, April 20, 2012

MRI Results

Emmett's first MRI since starting treatment was today.  Essentially this was the first look at whether the protocol he's on is having an effect.  You can imagine that Katy and I were on eggshells.  What would it mean if the tumor had continued to grow?  What hope would we have left?  After his last MRI the surgeon showed up within two minutes to give us the results and take him off to emergency surgery.  (This is essentially what happened originally at UNM; and both of the emergency surgeries were on Fridays, just like today.)  You can imagine that left a sour taste in our mouths for MRI's.  To add to our anxiety today was the fact that his blood counts unexpectedly dropped back to zero after having climbed over the last two days.  What does that mean?

Well, the MRI showed the tumor on his brachial plexus had shrunk!  That's great news!  They were unable to conclusively determine whether the remaining tumor inside his spine had been reduced, but it also didn't look like it had grown at all (I believe there's so little left after the last surgery that it's difficult to tell what's going on).  They did note a pooling of fluid on his back near his left shoulder blade which I had pointed out on Monday, but after consulting with the neurosurgeon they don't believe it's anything to worry about.    We're still a little anxious about it but there's not much we can do for now.

So the cancer is susceptible to the chemotherapy...let's beat the heck out of it before it builds up a resistance.

They sent us home this afternoon.  We'll be here until Tuesday when he's scheduled to have the ommaya reservoir placed in his brain for intrathecal chemotherapy.  Then his next round of chemo starts Wednesday. 

We're optimistic!  We feels that prayers are being answered and that today was another miracle.  We pray the miracles continue!

Wednesday, April 18, 2012

A Dana-Farber Tradition

During construction of the Smith Research Laboratories at Dana-Farber Cancer Institute in 1996, a strong bond was formed between the iron workers and the pediatric cancer patients.




The tradition continues today.


Locks of Love


We were pleasantly surprised to get this picture yesterday. It made me smile from ear to ear.  A donation for Locks of Love.  Partly I appreciate this so much, because I could grow my hair my entire life and still not get it that long.  What a sweetheart!  

Sunday, April 15, 2012

"Skull Buddies"

 
Emmett's cousin & uncle decided to join the club!  Well, anyone in our household is yet to join it (although Emmett likes best to lay on my left shoulder so the left side of his head now has a bald patch), so technically they are the founders!  We are loving their support!  (And how cute are they!!??)

Saturday, April 14, 2012

Looking Up

Emmett started feeling better today.  His fever was on and off throughout the day, but tonight he perked up and started being himself!  He even started eating again tonight.  He took some bites of blueberry yogurt mixed with gravy (yuck, I know, but he insisted), then he ate a few bites of ice cream.  Earlier when we started eating dinner I took a bite of pizza right away and was reaching for a drink, but Emmett stopped me, put up his hands, and insisted on having the prayer we had neglected.  Good show kid!  Then later when the nurse gave Katy a syringe of oral meds to give him, she took the cap off the syringe and put it on the table, then reached across the tray to give him the medicine.  She got him to take a small swallow, then he went crazy pointing for something on the food tray.  We gave him everything on the tray one by one, but he kept pointing.  Finally we realized it was the small syringe cap he was reaching for, and as soon as we gave it to him he put it back on the syringe, took the syringe from Katy, and gave it back to the nurse.  He definitely wasn't taking any medicine tonight!  I guess we can cut him some slack :)  He also got down and took some steps in our room tonight.  It was good to have him squirming around wanting to be down on the ground!

You can't believe how wonderful it is to see some personality come out again.  It looks like we may get our Emmett back soon!  Hopefully he keeps improving quickly!  The only sad thing about today is that he started losing his hair :(  I'll shave my head soon so we'll be skull buddies together.

Friday, April 13, 2012

Dr. Kieran's Comments

Dr. Kieran stopped by this evening.  He was in a talkative mood tonight and shared a lot of information.  It's interesting to learn each doctor's bedside manner - he has a slightly different approach than Dr. Chi (our primary).  The bullet points from our conversation are as follows:
  • Up until DF started this treatment program there were only 5 known ATRT survivors 
  • Most of the ATRT patients DF sees are under the age of three
  • Though historic ATRT survival is ~10%, on the DF protocol, survival is ~50%
  • Across all cancer treatments available at DF, the ATRT treatment is without question the most severe (~100 times more severe than typical leukemia treatment)
  • Treatment involves all options available (surgery, chemotherapy, and radiation)
  • Severity of treatment is measured in the number of different chemotherapy drugs used, the dosages of each drug, and the length of time the patient is allowed to recover between chemotherapy treatments
  • Once treatment starts, the cancer immediately starts looking for a way to survive it - if it builds up an immunity to the chemotherapy before we've killed every last cancer cell, then it wins - there are essentially no other options available to us
  • With ATRT it's a race against time - they essentially they hit the patient with chemotherapy as hard and as often as they can.  As soon as the patient has recovered from the first round of chemotherapy the next round starts - we can't give the cancer any extra time
  • They don't know why some ATRT tumors respond to treatment and others don't
  • The fact that Emmett's tumor grew back in 10 days is not good, but hopefully means it will have a positive response to chemotherapy
  • All of DF's long-term survivors have been disease free at 5 months into treatment (after 5 months the intense treatment is over and maintenance chemotherapy is continued for the next 7 months).  At 5 months, we'll have a good idea of where this is going
Though Dr. Kieran didn't discuss radiation during our conversation today, we're hopeful the fact that the tumor is outside the brain allowing focal radiation treatment improves his chances.  We're also holding onto the fact that the one spinal ATRT patient they've treated survived.  They also had a patient with an ATRT on his brachial plexus that also fared well.

We're also holding onto the fact that we've seen miracles already and expect more.

It's hard to see Emmett so sick.  He's had a fever for three days now.  He hasn't walked since Tuesday.  He hasn't eaten anything since Tuesday.  He's a poor, sickly boy right now.  He sleeps face down, and we only know he's awake when we see that his eyes open.  We did get a half smile out of him once today, but that was it.  We pray he doesn't remembers these days.

It was nice to get him outside in the garden for an hour today.  The flowers are blooming, the leaves are coming out, and it was sunny and warm and beautiful (perfect opening day for the Red Sox down the street).  The garden is next to a small medical library which is my new favorite spot to work remotely from the hospital.  The library has a large window that faces the garden and the highlight of my day was watching Katy and Emmett continue to enjoy the garden after I had returned to work in the library.  Emmett even recognized me a few times through the window!  Such a beautiful, wonderful day.  I hope we get more when Emmett is feeling better!

Wednesday, April 11, 2012

Fun while it lasted...

So our respite was short-lived.  Emmett woke up with a fever this morning and they had us bring him in.  One of the side effects of chemotherapy is that your blood counts get really low (specifically white blood cells, red blood cells, and platelets).  While his blood counts are low, he essentially has no defenses against bacterial and other infections.  If an infection goes unchecked, his condition can get serious very quickly.  For this reason, as soon as he gets a fever they want him in the hospital so they can look for an infection, start him on antibiotics, and monitor his condition.  Sometimes they find an infection, but more often there's no apparent cause for the fever.  However, they keep him in the hospital on antibiotics "just in case" until his condition improves.  When his blood counts start going back up, he'll start feeling better and they'll let us go home.  What we've gathered from the conversations today is that the time frame for release can be anywhere from a couple of days to a couple of weeks.

It's sad that Emmett will experience more misery stuck in the hospital in the coming days...and weeks...and months.  The good news, as Dr. Mark Kieran put it today, is the fact that we're in the hospital a lot means that we're hitting the tumor hard - and that's exactly what it needs and deserves.

We've continued to see miracles and blessings which have strengthened and encouraged us over the past few weeks.  It was a miracle that Emmett's flow study showed normal cerebrospinal fluid flow which allowed the doctors to start intrathecal chemotherapy to treat the cells that have made their way into his spinal column/brain.  With two spinal surgeries in the last month, the doctors expected his flow may have been disrupted due to scar tissue and inflammation.  It's a miracle that Emmett has regained some use of his left arm.  As our families have continued to research ATRT, the word continues to come back from members of the medical community that two specific doctors, Susan Chi and Mark Kieran, are premier physicians in treating this particular cancer.  We feel very fortunate to have them as our attending physicians. What are the chances of them working at a hospital within 30 minutes of Katy's parents?  There's no question the Lord has prepared the way before us for Emmett's treatment.

We count it a great blessing that I'm able to work remotely during this difficult time.  Many jobs don't have that flexibility, and I can't imagine how hard it would be to watch from New Mexico as Emmett starts treatment.  Additionally, a couple we met tonight showed us where you can sometimes find a room to stay in the hospital for days when Emmett's room only allows one parent to sleep over.  That prevents one of us from having to make the trek to the Ronald McDonald each night, and we consider that a blessing.  We also enjoyed the messages of General Conference two weeks ago when modern-day prophets shared messages to strengthen us in our trials and tribulations.  Never have more conference talks applied directly to us - it's like several of the speakers knew our story and wrote a talk especially for us.  Katy and I especially enjoyed the talks by Neil L. Andersen, Russell M. Nelson, Ronald A. Rasband, and Henry B. Eyring.  In reviewing these messages we've been blessed with an increased measure of peace and comfort to during this difficult time.  I know we'll reflect on them often during the coming months.

So one fun tidbit - I walked into our room tonight with a Dumdum sucker in my mouth.  Emmett was pretty wiped out from drugs, fever and exhaustion, but he opened his eyes slightly, saw my sucker, outstretched his hand, and whimpered until I gave it to him.  Then he held it against his chest and went back to sleep before even tasting it (holding candy in his hand but never eating it is his latest thing).  Well, luckily I'd come prepared with a backup sucker.  Five minutes later, Emmett wakes up again, insists on me giving him my second sucker, and then goes back to sleep.  Two hours later I'm startled by Emmett shrieking in his crib and I jump to to find out what's causing him pain.  What do I find?  One of the half-eaten suckers has adhered to the bed sheet and Emmett can't get it off.  After I helped him pull it off, he stops crying, holds it to his chest, and again goes to sleep!

Tuesday, April 10, 2012

We're Home!!

Oh, is that a camera?!? in that case, "ChEEEEzE!

(Boston home, not Albuquerque home, just in case there was any confusion)
This was our longest stay yet. We went into the ER Thursday March 29th and left yesterday evening, April 9th. Starting Friday morning, he was sedated 3 times within 24 hrs. Monday night, without even waiting to recover from a serious surgery, he started his very first round of Chemo. We've written a lot about his surgery & the start of chemo, but we wanted to let you know how the rest of the week went.
Monday night's chemo was 1 drug/toxin that is only a 2 minute infusion and then another one that infuses over 6 hours, so by morning he was done. Tuesday night, at 1 am, he started the next 2 drugs that infuse over 48 and 72 hours. Saturday morning, he was finished with his first round of Chemo! He had done ok through the chemo itself. He had started to get mouth sores (which run through your ENTIRE GI tract; imagine having canker sores the entire way down. Terrible, I know). It seems as if those have kind of gone away? But maybe as his counts get lower, they'll come back. We hope not, though!

Here's an excerpt from Micah's journaling:

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"On Thursday we had Emmett's CSF flow study. This is a nuclear medicine test that verifies whether the spinal fluid flow is good enough to allow intrathecal chemotherapy (if there's a blockage in the spinal column or brain that prevents flow, they won't do intrathecal because all the chemo will stay in one place). The study involves a lumbar puncture to inject a radioactive isotope into his spine which they then take a series of images of over the next day and a half. This procedure begins much like many others - we take Emmett to a new room in the hospital with a suite of equipment and surgical instruments. Then different teams all come in and consult with us and get us to sign a consent form. We always meet with a team of anesthesiologists, nurses/lab techs, and a team of doctors conducting the procedure. Emmett is with us during the whole thing and sees the different teams one by one. Then, after all consults have been given and the forms have been signed (over the course of 30 minutes or so), all the teams come back into the room at once prior to applying the anesthesia.

During this procedure I began to feel especially bad for Emmett. He's gotten to the point where he sees all the teams coming back into the room and starts getting nervous. He knows that the teams aren't there to do something to me....or to do something to Katy. All these scary people wearing masks and smelling like hospital have gathered here for him. To do something to him. And he knows that it might be painful and that he may or may not remember. And it's so sad to stand there as a parent helpless. Watching your crying, terrified child go limp in your arms, realizing that every procedure has its risks, and knowing every time that we may not return to find the same Emmett we left. I expected this would get easier as time went on, but it has only gotten harder...and harder.


When Emmett came to we joined him in the recovery room. It took him longer to recover from this anesthetic than it has from any other sedation that wasn't general. We were probably down there for more than an hour before they cleared us to go back upstairs, but by that time it was only 30 minutes from when they wanted to take his next image, so we just stayed downstairs. His next images we didn't have to sedate him for, we just had to hold his head and body still under the imaging equipment (about an inch above his face with him lying on his back). He cried so much as we held him fast for 10 minutes or so for both images (one with him looking straight up and one with his head turned to the side). He cried and cried and cried. At least this time he wasn't in pain.

The next morning we had to do one more image. Again we had to hold him fast while he cried, but this time Cris' ipad and Winnie the Pooh helped! The good news is that the flow study results showed that he has good flow and is a good candidate for intrathecal chemotherapy, which will more closely target the cells that made their way into his spine."
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It is awful. You really do think it would get easier, but it doesn't. Emmett is recognizing more and more when we get to a procedure room and is fussy & trying to leave before anything even starts. Imagine having to fast all the time, then be knocked out & he's too young to understand, so he never knows if he's going to wake up with staples or stitches somewhere in his body, or what will hurt when he wakes up and where he'll be. It must be so scary for anyone, let alone such a little guy.

Saturday morning when they unhooked him from his last drop of Chemo we cheered! He'd done ok, but a lot of the side effects will still come the week or 2 after. But we were excited to be able to leave the floor. The nurse even unhooked him from regular fluids so we got to carry him around without any attachments. Oh happy day! We took him down to the gardens, and there is a little doorway through the hospital that we discovered that takes you out to another little area with a playground and Emmett's new love-a basketball court! (I think that comes from watching the Young Men play on Saturday mornings this past winter) We brought a little ball & shot some hoops. He enjoyed it.

Easter Sunday was nice. I don't know if it's because it was Sunday or because it was Easter Sunday, but hardly anyone was around besides nurses & CAs. We had some nice family time and a visit from my family & a tasty dinner some friends sent down. But the evening we had all to ourselves, which never happens in a hospital. Everyone imagines so much down time that you're bored to tears, but truthfully, during the week, you're lucky if you go 20 minutes at all without an interruption from a therapist, doctors, checking for vitals, housekeeping, foodservice, more doctors, Child Life to tell you about an activity, more nurses, volunteers asking what they can do for you, etc.... It's all very nice, but it all adds up and at the end of the day, you really have had no down time at all. So Sunday evening was especially nice, as I said. We were happy to have some quiet time to ourselves. A 12 year old on the floor is also a night owl & he had gotten TONS of candy plus a nerf gun for Easter, or maybe just for being in the hospital. He was really out going and happy to share & that made Emmett's night when he let him shoot the nerf gun.

(We did have some fun time over the weekend. Lots of people say Emmett looks just like Micah, but if that wasn't the case, his love for popcorn would also give it away!)
Who can resist popcorn and a movie?!
Sunday afternoon, Emmett did throw up...a lot... (the only time so far) which was really sad, but we think it was more because we tried to feed him too much & then ran him around too much for his first time with an appetite again. We've learned quickly. No problems again, but his appetite is still not great. He was also off the antinausea meds, so we started those again the rest of the day.

Monday he had a lumbar puncture and his first intrathecal chemo. I took him into the procedure room that time and they asked me to undress him (mostly so his clothes wouldn't get stained from the washdown. He cried as I took clothes off of him. The nurse put them up on a shelf and he just cried & reached for them. Poor Emmett just wanted his comfort, his privacy, a little normalcy. This anesthetic was weird-just like they'd told us-he'd "fall asleep" with his eyes open. Even harder to put him down on the bed & leave him there. Later that afternoon, they gave him his week 2 dose of chemo, which was again just a 2 minute infusion. Monday night they sent us home with TWELVE prescriptions. Emmett slept 12 hours last night, which I have never seen him do. He's been a lot more sleepy and clingy today, but he's had some happy spurts and doesn't seem to be in pain, which is good. Hopefully we can keep him clean and healthy enough that we'll be able to be home a few days before having to head back from a fever!

Despite all the emotions and pain for Emmett from surgery & side effects of chemo, you naturalists can all condemn us but antinausea meds & a little morphine go a LONG way! It was great to see some of his real personality come out & to see him happy and playing! Here are a few videos for all of you from this week.

Emmett's love for Purell will definitely help with staying home as long as possible!
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We'll title this one "Bribery for a Bath" - my brother Cris has one of these fancy gadgets & Emmett took about 2 seconds to figure out how to work it & become quite in love with it. He dropped it off over the weekend so Emmett could play with it in the hospital. I stuck it in Emmett's PJ drawer & when I was giving Emmett a bath, he suddenly got all excited & crazy as I was getting out his PJs & I realized he discovered the ipad's hiding place ;) Then he made up his own sign for it & started saying it! He can talk when he is motivated!!!
And another funny ipad story is yesterday (Monday the 9th), the Speech Pathologist came in. She had told us about some good apps for speech therapy and was showing them to Emmett. She'd let him play for a minute, then take it away & try to have him ask/communicate for it back or to ask for which game he wanted to play. After about 5 minutes, all of a sudden Emmett turns and points like crazy at his drawer. I started laughing (and opened to drawer which currently didn't have the ipad in it anyway) because to me he was saying "Wait a minute....why on earth am I working so hard for your ipad when I've got my own right over here and can do whatever I want on it!!!"

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When he was on this week's chemo, he could leave his room, but not the floor (without a nurse, and nurses don't really have time to roam the hospital, so basically you are stuck on the floor). He has quickly come to LOVE the elevators!! Forget the play room (which sadly is only open 9-5 M-W so pretty much there's nothing to do on nights and weekends, plus the playroom is small. UNMH definitely has probably the best Child Life room around. We miss you dearly and am sorry we took you for granted!!!!); this kid will go in there for about 2 minutes, and then he's done and he just wants to press buttons on the elevators & then ride them. When he couldn't leave the floor, he just presses the button. There are 2 halls with elevators near us & they each have 5 elevators. He loves to call the elevator, then guess which door will open up. He looks all around and when he hears it ding, he gets all excited and points to the opening door!

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Emmett started warming up to nurses after a week. He'd play catch/throw lion at his nurses & play with them. He'd just said Hi to his nurse, Erin, then she went back behind the nurses station, and we laughed as we watched Emmett follow, ready to throw lion & fully expecting it to be retrieved.
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Walking! His walking is on and off, but he walked a bit over the weekend! YAY!!!
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THANKS TO ALL OF YOU FOR YOUR CONTINUED INTEREST,
GENEROSITY, LOVE, FAITH IN A MIRACLE, PRAYERS & PATIENCE WITH
LAG TIME BETWEEN REALITY & BLOG UPDATES!
WE LOVE YOU ALL, TOO!

Thursday, April 5, 2012

This week....

We had a little 'picnic' & put down a sleeping pad & ate & played on tuesday
Eating can be pretty messy

A benefit of industrial strength cribs is that we can get in his crib & snuggle ;)
This picture sums up the last couple of weeks for all of us:
Night Owl: Emmett perks up at night usually & we've had fun playing with
him long after most the kids around have gone to bed



Wednesday, April 4, 2012

Chemotherapy

Emmett got his first chemo Monday night.  We were surprised at how late he received it - we expected it in the afternoon, but he didn't end up getting it until just before 10 pm.  It was really scary most of the day, waiting for them to walk in with it and apply poison to his bloodstream.  My heart would pound anytime anyone came near the door.  By the time it finally got rolling I think I was so mentally exhausted from expecting it all day that it was much less traumatic than I expected.  At least for me, Sunday was probably a more emotional day than Monday.  I guess I did have my fair share of emotion Monday, so I take that back.  But by the time they finally brought in the toxins I was so spent that it wasn't nearly as emotional as I anticipated.

I guess you just accept that fact that even though they're putting poison in his body, it's less toxic than the cancer that has twice tried to paralyze him in the last month.  I'm sure it wouldn't take much longer for the cancer to totally overcome him if left unrestrained.  So sucker punch it now while we have a chance, and before it has debilitated his body any more (the nurses say cancer patients we see that are physically debilitated are that way due to damage from the cancer, not the chemo).

Chemo is less destructive than the cancer -- hold on to that thought.

We did have a good day Monday.  We went around the hospital a few times throughout the day.  A music therapist stopped by and really perked him up.  He had been lying in bed pretty immobile, much like he had been since the surgery.  For some reason I decided to start doing everything I could to make him laugh, which usually isn't in my personality (that's more of Betsy and Cris's specialty).  But it was amazing what happened.  He started smirking just a little, then eventually he smiled!  Then he wanted to sit up, then I got him excited to come down and play with some toys we had brought from Child Life including a tool box with tools and a sketching pad (his favorite part is erasing).  I was playing peak-a-boo from behind the bathroom door and pretending to eat the tape measure, and he was responding and smiling, even if the left side of his body was still immobile.  It was about that time that the music therapist stopped by and played some songs for him.  That about brought tears to my eyes as my debilitated son tried to engage in her songs in whatever way he could.  She brought a guitar, and he remembered where you strum it a even before she played it (thank you Malcolm and Aaron!).  He could only use one hand, and was rather clumsy, but he made some sounds.  The sounds he made reminded me of a movie August Rush and the music that the boy made, and it made me think about boys in sad situations...and it made me sad.  The therapist played a few more songs including Old McDonald and the intsy-wintsy spider, and some others.  She had a recording device so that Emmett could push a button and make dog, cat and other animal sounds as she sang Old McDonald.  He made a horse noise for the first time (neigh)!

I'm trying to remember specifically what else we did Monday.  Late in the day we had a small miracle.  The nurse had brought blocks in for Emmett to play with, and he started reaching for block towers with both hands - it was the first time we'd seen him use his left hand since before his last surgery.  We were so excited!  Excited to see him make some progress, and a little sad that it was right before the administration of poison.

Starting the chemo infusion is a huge deal - with all the checks and double checks it literally took all day (until 9 pm) before they were ready to start, and then it still took another hour to get it started.  There are sooooo many meds they give him before, during and after chemotherapy.  I can't believe it.

They bring the chemo is these special syringes and bags, all labeled and marked toxic biohazard.  Vincristine came in a syringe (with special attachments), while Cisplatin came in a black bag (that always looks comforting on your IV tower).  Katy was holding Emmett and he fell asleep before they started the pumps.  Vincristine was first.  It went in over the course of a minute.  The Cisplatin was then started and that was a continuous infusion over 8 hours.  We put him in bed, and he slept through the whole thing, including diaper changes (you have to change his diapers every 2 hours wearing special gloves so you don't contaminate yourself).  We expected him to wake up with side effects (vomiting, headaches, mouth sores, etc).  The nurses say some kids deal with it better than others - some kids are in pain and misery the whole time, while others are still playing and you'd never know what's going on.  So far, at least for the first night, he dealt with it well.  We feel that was an answer to prayers as we've wanted him to have a few good days to continue recovering from the surgery before the chemo knocks him down (if he never started using his left arm and leg before chemo started, and then chemo made him feel so awful that he wouldn't do anything for a week, how much would Emmett digress?  How long would it be before we would know how much function would return after his surgery?  That's one reason we were so happy to see him start using his arm before the chemo started).

Tuesday morning came and you wouldn't know it was any different than any other day since his last surgery.  There was really nothing to indicate what he had received overnight.  He was a little more active.  He wanted to be out of the room more exploring the hospital.  He stood on his own much more - and he took a fair number of steps, especially when we were down in the entertainment area with Cris eating pizza by the ball machine (probably 10-20 steps total).  He's still really hesitant/weak on his left leg, but he uses it.  He was using his left hand more.  We noticed him using it to rub his left eye.  He was holding the rain stick (a tube with lots of beads in it) with two hands, along with a few other toys.  Maybe the swelling from the surgery is going down.  Maybe the chemo landed an uppercut and knocked the wind out of the cancer.  Who knows.  All we know is that Emmett progressed on Tuesday, and that makes us happy.

More chemo will be delivered any minute and they'll start an infusion that will last 72 hours.  Hopefully Emmett does as well again!

-Micah

Tuesday, April 3, 2012

Videos!!!!

Fish Face: This was the day after his first surgery at DFCI, so probably 2 weeks ago from today.
video

Betsy made a sweater with Lion on the back. He wore it through the night for a total of 18 hrs or so! He kept waking & crying when I tried to take it off, despite the fact that he was sweating quite a bit. I finally got it off during a nap. Maybe his arms hurt from the surgery or something else, but I think he liked wearing Lion ;)
video
I showed him the back of the sweater & he recognized it as Lion right away ;)
slept with it on all night...