The Adventures of Little Muncher and his Lion: We're going HOME!

Wednesday, October 2, 2013

We're going HOME!

Emmett's scan was stable today and they cleared us to go home! Miracle of miracles! When we left New Mexico a year and a half ago we didn't know if we would return with our sweet little Emmett...if he would ever walk through the front door or play in the backyard again. And when i've traveled back to Albuquerque for work in the time since i've never washed his smudges off the sliding glass door in case he never had the opportunity to make more...but now he will! NOW HE WILL!!! Words cant express the feelings of our hearts tonight. Or adequately express our thanks and gratitude for your prayers, fasting, and faith. And while our doctors still havent declared him "cancer free" or "cured", this is clearly a big step in the right direction. And we add this to the list of miracles we've been keeping from day one.

The sodas are on me tonight folks, so drink up and celebrate with us...for this is truly a joyous occasion!

27 comments:

Betsy said...: Never have I heard better news in life!!! I will definitely be celebrating with you!!!!; October 2, 2013 at 8:44 PM
Unknown said...: YIPPEEEEEEEEE!!!!!!!!!!!! We've been praying EVERY DAY for this! Congratulations you guys! Love, Clark, Kayloni, Erin, Tyler, and Eliza; October 2, 2013 at 9:06 PM
Cris said...: Now I don't feel bad for sneaking some root beer!; October 2, 2013 at 9:11 PM
Carl and Amber said...: Soooooooo HAPPY for you guys!!!!!!!; October 2, 2013 at 9:15 PM
Lisa Michelle said...: We are so thrilled! Congrats MKE!!; October 2, 2013 at 10:21 PM
ellen said...: That's the best news ever! Even though I'll miss seeing you in Boston, there's no place like home.; October 2, 2013 at 10:31 PM
Bri!!! said...: Best news ever!!!!!!; October 2, 2013 at 11:39 PM
Mom and Dad said...: Leave a smudge or two at 128, please!

So happy.
Love,
Mom and Dad; October 3, 2013 at 3:01 AM
Anonymous said...: This is the best! Have a wonderful homecoming with Emmett!
The Griswolds; October 3, 2013 at 7:13 AM
Cait said...: Yay! We're so happy for you!; October 3, 2013 at 7:21 AM
Cait said...: Yay! We're so happy for you! It will feel good to come home, I'm sure! :); October 3, 2013 at 7:22 AM
Heather said...: So happy for you all! I can't wait to come visit you all in New Mexico!; October 3, 2013 at 8:14 AM
Lisa said...: YAY, so happy for your cute family!!; October 3, 2013 at 11:33 AM
Kristen and Bob Krieg said...: We have never stopped praying for Emmett and your family, the doctors, and that a miracle of healing take place! We rejoice and celebrate with you! We love Emmett so much, even if we are far away from him! Thanks for sharing him through this blog!; October 3, 2013 at 3:20 PM
Tasha L. said...: Oh, what a wonderful day for your family. What an answer to prayers. We are so happy for you.
Bob and Tasha Lamoreaux family; October 4, 2013 at 10:07 AM
Elizabeth Davis-Edwards said...: Happy Happy Day! We could not be more thrilled for you. Time to make some fingerprints!!; October 4, 2013 at 7:33 PM
Renee Swenson said...: Thank you, Micah and Katy, for always keeping us updated so we know how Emmett and your family are. This means a lot to us! We are happy and grateful for the miracles and blessings of the Lord.; October 5, 2013 at 4:44 AM
Unknown said...: We are so very happy for your good news, God Bless!; October 5, 2013 at 9:16 PM
Unknown said...: We are so very happy for your good news, God Bless!
Tom and Susan Mooney; October 5, 2013 at 9:18 PM
Ryan and Katie said...: Micah, Katy and Emmett, we couldn't be happier for you guys! All that you three have been through. Thank you Heavenly Father, thank you, thank you. We have hoped this day would come for you guys. It is a miracle!

Love the Eden's,
Ryan, Katie and Alana; October 6, 2013 at 12:02 AM
Stacey said...: Yay that is sooooo awesome! Only wish we were still there to welcome you guys home!!!; October 6, 2013 at 12:11 AM
micahl said...: Thanks for all the support and well wishes! This sure is amazing news for our family and we're happy to have so many people celebrating with us. We hope that you all get to meet our little miracle one day. Thanks for your continued prayers and love! They've kept us afloat on this long journey...and surely will carry us on the long road ahead.; October 7, 2013 at 8:48 PM
Holly & Matthew Blanchard said...: This is TERRIFIC NEWS!!!!! What a blessing for your whole family. Wishing you all good health and an abundance of joy each and every day. So many tender mercies around us daily! Thank you for keeping us posted! Best wishes for a happy journey ahead!; October 7, 2013 at 9:48 PM
Stacie said...: Such wonderful news to read tonight. I am so very happy for your family right now. Praying for your sweet boy. May his miracles continue.

Much love,
Stacie Smith; October 7, 2013 at 10:50 PM
Aunt Nancy said...: We are so happy to hear the great news!! May God continue to bless your family!!; October 8, 2013 at 6:25 PM
Nicole said...: Woot! We are so excited to welcome you back to the Land of Enchantment! It hasn't been the same without you all!; October 8, 2013 at 7:29 PM
Swoopref said...: Great news!!!!!! (Except the part about moving back to NM)

Love you guys....; October 23, 2013 at 3:07 PM

Little Muncher's Story

Background: On February 23, 2012, our 17-month-old son Emmett stopped using his left leg and was rushed into emergency surgery to remove a tumor compressing his spinal column. After a series of tests, he was diagnosed with Atypical Teratoid / Rhabdoid Tumor (AT/RT), a very aggressive and rare form of cancer that attacks the central nervous system. While the survival rate is very low for a toddler Emmett's age, we believe in miracles and have witnessed many already.

One of the best places for treatment is Dana Farber Cancer Institute in Boston and we relocated to Massachusetts where Emmett underwent a year and a half-long treatment program involving surgery, chemotherapy and radiation.

After successfully completing his treatment protocol in the summer of 2013, we returned home to Albuquerque and enjoyed two years of fun family time until Emmett had a small recurrence in the fall of 2015. That spot was treated successfully with proton radiation in Boston and Emmett was again stable until July 2017 when the doctors noted a small spot on his spinal cord in his neck. We enrolled Emmett on a phase 1 clinical trial in Denver testing a EZH2 inhibitor (Tazemetostat) which successfully reduced the spot in his neck within two months and kept him stable for over a year.

In October 2018 a MRI revealed a new spot on the outside of his brain near his left ear. We traveled to Boston to consider treatment options and are currently awaiting direction from doctors.

8/3/17 Status: After learning last month that Emmett's tumor is coming back, we're working with our medical team to determine treatment options and the best place for treatment. Emmett successfully made it through his first recurrence in January 2016, and we're hopeful that we'll find a solution again this time. We're praying that things don't get too crazy until after the baby comes in early September. It's likely that we will be headed to Denver or Boston.

11/30/15 Status: Emmett is getting a port this morning so he won't have to get gas anesthesia every day for his radiation treatment. His Radiation started last Monday. More on that in a full post.

7/19/13 Status: Emmett spiked a fever and was admitted to the hospital. His ANC was 22 yesterday so we'll likely be here for a few days until his blood counts recover and his fever goes away. This may be our last inpatient stay in Boston Children's Hospital. Mixed emotions...this has become a second home for our family.

7/10/13 Status: Emmett started week 51 chemotherapy today, his final round. Three days of infusions and Emmett is done receiving chemotherapy. Praying the protocol has done it's job and the cancer is gone for good!

6/21/13 Status: Emmett was admitted to the hospital with a fever today. Hopefully we're only here a few days before his counts come up and they send us home. His ANC was 56 yesterday and 50 today.

6/10/13 Status: Emmett started week 48 chemotherapy today. Five days of infusions in the clinic. Only one more round after this! We can't believe we're almost done. We continue praying the chemo has done its job.

5/2/13 Status: After a few weeks of delays Emmett started week 45 chemotherapy today. Last Monday he was too low (620 ANC), Monday of this week he was 750, and he needs to be over 1000 before we can start. (We could have started 4/16 when he was 3000 but we delayed as we had family in town.) Only two more rounds after this!

4/11/13 Status: We were discharged from the hospital on Saturday. Had perhaps the worst night in the hospital Friday night, at least physically, for Katy and me...we both came down with a stomach bug Friday afternoon/evening and it was horrid. Only upside was they moved us to a private room! Sure makes us appreciate and pity Emmett more knowing that he feels that way so often. The good news is that Emmett's counts were up on Saturday and we were able to go home as soon as his parents were well enough, ironically.

4/1/13 Status: Emmett got a fever this evening and we ended up in the hospital. We anticipate being here for a few days until his counts come up.

3/25/13 Status: Started week 42 chemotherapy. Five days of outpatient infusions. Micah traveled to California for work this week. Last week he was in New Mexico.

3/7/13 Status: Brought Emmett into the hospital with a fever. Will probably be here a few days before his counts come up.

2/25/13 Status: We're headed to the Jimmy Fund Clinc M-W this week for outpatient chemotherapy including intrathecal (week 39 of the protocol). The Doxorubicin is a quick push this time instead of a 48 hour infusion so they can use a heart-protection drug in conjunction. We'll post about our medical consultations later this week.

2/15/13 Status: Quick summary Hopkins and CHOP consultations: Hopkins would not recommend surgery, believe remaining bulk is scar tissue, suggest sending Emmett to stem cell. Boston doesn't know if they buy the scar tissue argument. CHOP doesn't recommend surgery or stem cell, finish current protocol instead. When MGH's recommendation is taken into account it's an even tie: two institutions recommend stem cell, two recommend wrapping up therapy now, all acknowledge this is a very complex and ethically challenging case. We're very thankful that surgery may be off the table!

2/6/13 Status: Met with Hopkins yesterday...at the time of our meeting they hadn't compared his Monday MRI to his previous scans from Children's so what they could tell us was limited. Preliminarily it looks like they wouldn't recommend surgery, but the jury is still out. We expect more info and a recommended path forward later this week.

2/4/13 Status: Made it safely to Baltimore late Saturday night, stayed in a hotel, then checked into the Children's House at Johns Hopkins Sunday afternoon. Had an MRI today, haven't heard the results yet. We meet with the surgeon tomorrow.

1/30/13 Status: Emmett was discharged from the hospital on Monday and now we're at the Ronald McDonald house here in Boston. The doctors want to limit Emmett's exposure so that he's healthy for his consultation at Johns Hopkins next week to prevent any delays. He's doing well! We got to visit Destiny and Brandon at the hospital last night and they're also doing well, best day Destiny has had in a week. Hopefully another good day today.

1/24/13 Status: Emmett had another round of maintenance chemotherapy last week in buy some time to visit Johns Hopkins in early February. He's getting to his low point in the chemo cycle, may head into the hospital with a fever in the next day or so. He's feeling especially crummy this time, he's been down all week. We think it's because he was already pretty sick prior to this latest chemo. Hope he feels better soon.

1/1/13 Status: We're doing Christmas today! Katy wanted to wait until New Year's Day so that there would be some holiday excitement. We really wanted to make this the best Christmas ever for Emmett. Had to break from opening gifts because Emmett needed a nap--rough life. We're very touched by the wonderful, thoughtful gifts so many of you have sent.

12/27/12 Status: Emmett's ANC was 580 today. He was still feeling a little crummy and needed morphine in the morning so we didn't want to head out right away. He got a platelet transfusion in the afternoon and then we were discharged around dinner time.

12/26/12 Status: Still inpatient waiting for Emmett's blood counts to recover. He's feeling pretty well today but his ANC needs to be above 200 and today it was 60 (yesterday and Sunday it was 10).

12/24/12 Status: Emmett's still feeling pretty crummy, probably the worst he's been since our first two admissions when he needed a morphine pump. Hopefully he perks up soon.

12/23/12 Status: Emmett didn't sleep well last night, was uncomfortable most of the night and border line feverish. He felt pretty crummy all day today and this evening his fever spiked so we headed down to the hospital for an admission. Most likely will be here for Christmas. Luckily the cafeteria food is amazing.

12/18/12 Status: Got to go home today! Looking forward to some time at home before Christmas.

12/14/12 Status: Admitted to the hospital today for a new port then three days of continued maintenance chemotherapy.

9/4/12 Status: PICC line inserted successfully today with no complications. He slept off the sedation over the course of a few hours and now is up making his way around the hospital. Praying for good news tomorrow after his MRI evaluation -- probably won't share the news for a few days, good or bad.

8/20/12 Status: Emmett completed his fifth round of chemo (weeks 13-15) without ever having to return to the hospital with a fever! He also never needed any blood transfusions! We went in today to start chemo week 16 expecting to be admitted for the week and were pleasantly surprised to find that it's all outpatient -- we'll go to the clinic for a few hours each day but otherwise will be at home. We're praying this round goes as well as the last.

8/13/12 Status: We took Emmett to the Jimmy Fund Clinic today expecting him to need a blood transfusion. Amazingly, his counts were so high that he needed no blood products at all! And instead of doing stem cell collection late this week or early next week like the doctors had planned, they sent us right over to the apheresis lab to collect stem cells today. We'll explain more about how stem cells may be used in Emmett's treatment on the blog soon, but for now just know that Emmett continues to do well.

8/6/12 Status: Emmett's chemo infusion completed late Thursday night and we were discharged from the hospital mid-day Friday. We expect to return with a fever any day now. Emmett has really enjoyed himself the last few days, he's still feeling well. We hope it continues a while longer.

7/30/12 Status: Last Friday his ANC was only 280; it has to be over 1000 before they'll start the next round of chemo. We didn't expect it to be high enough today, but Emmett surprised us again--his ANC is 1100 so we're admitted to Boston Children's Hospital for chemo week 13.

7/24/12 Status: Last Friday we were at Jimmy Fund, checking his counts and ready for an admission. All his other numbers looked good, but his ANC which is what really determines whether he's ready for chemo or not was still too low, not completely surprisingly. Took counts again yesterday, to prepare for admission today and he's even lower now! Dr. Chi called this morning to say she doesn't think he'll be ready this week at all and will check again Friday and plan for admission next Monday.

7/15/12 Status: We've been done with radiation for over a week now! Last Sunday Emmett got a fever and was admitted to the hospital and we were there all week. Micah flew to NM on Monday for business meetings. He got back yesterday afternoon, came to the hospital, and an hour later we were discharged and sent home. To make it a date night we picked up Shanghai take-out and had dinner at a park on Horn Pond where Emmett enjoyed throwing rice to the ducks.

7/1/12 Status: We're back at Katy's parent's home now. Micah's parents headed home this morning. Radiation continues tomorrow...four more days until Emmett's finished!

6/28/12 Status: Inpatient at Mass General for week 10 chemotherapy infusions, we hope to be discharged tomorrow. Almost done with radiation, the last day is Thursday, July 5th. Emmett continues to be active and is doing well. He got to see four helicopters land yesterday! And his grandparents are visiting from Michigan this week so he has extra entertainment.

6/21/12 Status: 5 weeks of radiation complete, 1.5 weeks to go. Chemo was scheduled to start tomorrow but Emmett's counts dropped to 410 today. So the admission is cancelled for tomorrow. Chemo will probably start Monday.

6/16/12 Status: 4 weeks of radiation complete, 2.5 more to go. Chemo week 9 complete. At the appointment yesterday when Emmett got his week 9 vincristine his ANC had gone up to 1000! Dr. Ebbs says this means he's on his way back up and that we won't be coming in with a fever this admission! So we're out of the hospital until next Friday when week 10 chemo starts!