The Adventures of Little Muncher and his Lion

Thursday, October 24, 2019

In Radiation Again...

Just a quick update to let folks know that we're halfway through radiation treatment for the remaining lesion that hadn't disappeared on the last scan along with the area they removed the tumor from during Emmett's brain surgery. They decided to do 10 days of fractionated proton radiation to treat the tumor cavity, and then the small lesion will be treated with photon radiation (stereotactic) later next week. So far Emmett has been tolerating the treatments well.

Next week we'll consult with a group that can get Emmett on a clinical trial for a drug called omburtamab which is commonly referred to as 8H9. This therapy is considered "radio-immunotherapy". It sounds like they create antibodies that are attached to a radioisotope which is then injected to the brain. When the antibodies attach to cancer cells, a radiation dose is delivered to kill the cells. The therapy is for neuoblastoma, but there is some evidence that it might also be helpful for AT/RT. Ideally kids are supposed to come into the trial with no evidence of disease, so we're hoping that Emmett's radiation and continued IT therapy has him in a "no visible disease" state before starting the trial.

Emmett has been low energy lately...these endless treatments taking a toll on the poor guy. He did have enough energy to dress up with Clayton in their Halloween costumes before going to his treatment on Tuesday! They put a smile on everyone's face.

Please keep praying that the treatments work! With Emmett's promising response to IT therapy, with a follow-on punch from radiation, and then with the promising 8H9 study, we have reason for hope!

Thursday, October 10, 2019

Some good news!

The two small lesions that remained after Emmett's brain surgery have reduced in size in the time since Emmett's surgery! One of them is significantly smaller, and the other one disappeared completely! The radiation team was planning to treat both of these masses with radiation next week, but now will only treat the one they can still see. They also plan on treating the cavity from which Dr. Smith removed the main tumor mass.

To learn that Emmett's body is responding to the intrathecal therapy he's receiving is so amazing! We didn't know when we'd see him respond to a medicine again! We know that the prayers and fasting of so many have contributed to this miracle for our family, and we thank you for your faith!

I can't express how much this ray of hope lifts our spirits. What a sweet tender mercy for our family!

To celebrate, we went out for dessert last night. For his "dessert" Emmett ordered bottomless zucchini fries with ranch dressing. He ate three servings and took three more servings to go. (The steroids he's on have done wonders for his appetite!) The smile on his face as he walked out of the restaurant with a bulging to-go box under arm could stretch across Texas.

...I'm pretty sure we all had that same smile on our faces, with this latest news. Go Emmett!!

Sunday, September 29, 2019

Home!

Just a quick update to say that Emmett is recovering well and they discharged us from the hospital yesterday. So that means the doctors are happy with the progress he’s making. It’s great to be all together as a family again.

Thanks for all your prayers, cards, packages, and other well wishes. We have truly been lifted by so many! God bless you all!

Thursday, September 26, 2019

Surgery's over!

Emmett is out of surgery and is moving all his limbs and talking! These are all very good signs. Dr Smith called the surgery a success. There were no complications and he was able to get all of the tumor mass he was going for. We will have to work with our oncology team to address the small remnants remaining.

We are so thankful to see Emmett make it through another brain surgery! We will be in the hospital for a few days as he recovers (ICU for at least one night, then we'll be moved to 9 North).

Dr. Smith is very entertaining. When Emmett asked him this morning whether he was going to use a robot to do the surgery, Dr. Smith said no, he would be doing the entire surgery by hand...with guidance from his GPS navigation system, ultrasound, and microscope. Dr. Smith says he does like to cheat as much as he can: "Like my grandpa says, 'if you're not cheating, you're not trying.'" He did tell Emmett that he does like tech and especially robots. He considers his Tesla a robot the way it drives him through traffic on his way to surgery while he's texting and doing other things on his phone. Not sure I'd leave my life and 18 years worth of medical training in the hands of the engineers at Tesla...especially considering I'm an engineer myself.

Dr. Smith is also famous for jokes. The joke this morning was about the dog in the old west who walked into a saloon with a huge bandage on his leg and said "I'm looking for the guy who shot my paw!" Even Emmett smiled at that one.

We're so thankful that surgery is over and that we can now focus on recover and the next steps moving forward.

Thank you so much for your fasting, prayers, and faith! The sustaining power it brings strengths and lifts our family!

Emmett, Lion, and Mom watching Tom and Jerry after surgery.

Tuesday, September 24, 2019

Seizures...and now, surgery

It has been a very eventful week here in Boston.

Last Monday intrathecal chemotherapy started (injected right into the brain 5 days/week). All went smoothly last week. But yesterday after they injected Emmett's brain with etoposide for the first time, he had a seizure. It was a pretty tramatic experience -- Emmett has never had a seizure before. It wasn't a very "big" seizure (localized to the right side of his face), and it only lasted about a minute, but he did lose consciousness and it made our hearts stop and set things in motion very quickly.

They admitted Emmett to the hospital for testing and observation. A quick look MRI revealed that his lesion has grown approximately 1 cm in the past two weeks from 16 mm to 25 mm. This increase in size (and associated swelling) is putting pressure on his left motor strip which controls the right side of his body. This explains why his seizure only affected the right side of his face.

The team had already tentatively scheduled surgery for Monday. But after reviewing this latest information they moved surgery up to Thursday. Emmett will remain in the hospital for observation until that time.

Emmett had another seizure last night, but soon thereafter the team started anti-seizure medications and he hasn't experience any more.

One bit of good news is that after Emmett's second CSF sample from last Tuesday came back "suspicious", subsequent samples on Friday and Monday came back "atypical" and "clear", and that is great news! Hopefully the IT chemo is doing it's job and cleaning up any loose cells floating around in Emmett's brain.

This week we will be praying and fasting for a few different blessings for Emmett.

That everything goes smoothly with surgery on Thursday (i.e. doctors can get the tumor, and with no complications)
That there are no lasting side effects
That the team comes up with a good treatment plan moving forward

Anyone who wants to join us in prayer and/or fasting for these blessings is welcome!

Wednesday, September 18, 2019

Happy Birthday Emmett!

We are very excited to be celebrating Emmett's 9th birthday today! What a miracle and a blessing to enjoy another birthday together! Emmett is feeling great today and we look forward to spending a wonderful, full-filled day doing the things he likes.

Emmett had his friends over for a birthday party this past Saturday and they all had a great time. Maybe I'll post some pictures later.

We'll keep praying for the chance to spend another birthday together next year!

Sunday, September 15, 2019

Another setback...

After a wonderful summer in albuquerque, we returned to Boston in September for follow up appointments and discovered that Emmett’s cancer has come back. This news was devastating: we expected that craniospinal radiation would at least buy a lot of time if not completely cure Emmett. He has always responded well to radiation. We all were very surprised to learn of this latest recurrence.

Treatment options are limited, but the team has some things they want to try right away, and we start treatment on Monday. Please pray for Emmett!

Emmett continues to feel well, and we hope and pray that the effects of the cancer are not felt anytime soon.

I’ll update this post with more information soon.

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!