The Adventures of Little Muncher and his Lion: Roller Coaster

Monday, March 26, 2012

Roller Coaster

The last two days have been a little scary. Saturday night Emmett woke up screaming and stayed up most of the night. A few months back there was a period of a couple weeks that he would wake up screaming in the middle of the night and we thought he was teething. It wasn't much longer until we found the tumor. Naturally Katy and I were a little freaked out when he started doing it again.

Sunday morning he was really lethargic and cranky. He only wanted to be held and never moved around much. It was pretty clear to us that he was in pain. He had some teeth coming through and we thought that might be the reason, but in Emmett's situation, what do you do?

We made it through Sacrament meeting then came home. He fell asleep in the car, but wouldn't go back to bed once we brought him inside, so finally we got back in the car and drove around for awhile. He did fall asleep for about an hour, but then was back to moaning and groaning. We had given him some tylenol earlier in the day, but it didn't make much difference. He was a little better in the evening, but seemed to be in pain again by the time we went to bed. In addition, we noticed that he his left hand was getting worse - he had stopped using it completely by bedtime. He woke up throughout the night again.

Monday morning we called and left messages with our doctors (neurosurgeon and oncologist) to find out whether we should bring him in. He'd had an MRI a week ago and we couldn't imagine things could progress that fast, but we wanted to error on the side of caution. We were all prepped to go to the ER when we finally got the oncologist on the phone. She said it sounded like he needed to be kept on steroids for a little longer (his prescription ended on Friday). The steroids keep inflammation down after surgery, and it's common for inflammation to return if the steroids end too soon, she said. Often in these cases the symptoms get even worse than they were before surgery which would explain why his hand had gone limp.

She renewed his prescription, and in the meantime we started using more tylenol which started making a difference today. He was playing again by early afternoon and was almost back to his normal self tonight. Crisis averted, for now!

It's so sad to watch Emmett lose function. It's been so amazing to watch him grow and develop over the last year and a half, and the thought of watching him digress due to his illness destroys you as a parent. We're so glad to find out this was all due to medication! We're hoping and praying for good news from the doctors this week - as of last Friday they were still undecided and were sending samples out for 2nd and 3rd opinions. We're still expecting miracles and fully believe everything will work out in the end.

-Micah

3 comments:

Bri!!! said...: Oh my goodness this breaks my heart. Poor little guy. There is not many things worse than seeing your baby in pain and not knowing how to help them. I'm so glad he is feeling better. Praying for that miracle!; March 26, 2012 at 9:09 PM
Renee Swenson said...: I thank you with all my heart for taking the time to keep us updated. Thank you for your faith. We love you and are always praying for your family.; March 27, 2012 at 2:35 AM
Richard and Valerie Anderson said...: You are all in our thoughts and prayers--and on the prayer roll at the Bountiful Temple. Love and hugs for Emmett.; March 27, 2012 at 11:09 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!