A good place

We got good news on Emmett's MRI results; everything looks stable.  They did mention that there's a lining near the tumor site that picked up a little contrast, but it's impossible to tell if it's because there's residual tumor there or whether it's the result of post-surgical change (scar tissue, etc.).  And that area is within the radiation field, so it will get treated either way.  We're happy about that.

We were glad that things looked stable and that there were no new areas of concern identified.  We also were glad that there were no questions raised about the area in his neck that got treated in Denver over the past year.  (We're always worried something might start happening there since he's not taking the EZH2 medicine anymore.)

All said, we're cleared to start radiation this week.  Emmett's first treatment will be Monday (moved up from Tuesday). 

With a full resection of Emmett's tumor, a clean MRI, and radiation and chemo starting this week, our family is in the best place possible, considering all the circumstances.  And for this we are very VERY thankful!  There is currently no disease that is posing a imminent threat to Emmett, and we're starting treatment from a clean baseline, and that's the best place we could possibly hope to be in.

Emmett is his happy old self again.  This week he has been obsessing over a toy trash truck that absolutely blew his mind when he saw it on Tuesday.  He's been talking non-stop about it all week and begging us to take him to buy it (with his own money).  We finally gave in yesterday, and he was very excited to bring it home.  He and Clayton have been playing with it constantly over the past day, and they're having so much fun.

Christmas is coming and everyone is getting excited.  And as far as we know, Emmett is healthy right now!  We feel like we've been given the gift of another Christmas where we will be in a good state mentally, where everyone is healthy, and we are hopeful about the future.  We have come to treasure these periods in our lives...and we pray that this one will last indefinitely.  We really do hope and pray that all the tumor is gone, and that the treatments will be effective.  Maybe another spot won't ever pop up again!  That's what we will continue to pray for!

The calm before the storm

Emmett's recovery from surgery has gone well.  The first week was pretty rough, he was rather discouraged by how different his body felt and how much pain he was in.  Feeling the stitches in his head was very strange.  He wouldn't open his mouth very much and didn't want us to make him smile or laugh.  Once he came off the post-op steroids his spirits brightened up significantly, and one week after surgery he was pretty much himself again.  And we were very glad to have him back!

Last Friday we had planning for radiation at Massachusetts General Hospital (MHG).  This involved a consultation with the radiation oncologist and a "mask making" session in conjunction with a CT scan.  The mask is to hold Emmett's head completely still while they administer the radiation to make sure that it goes to the right place.  They did a great job teaching Emmett was a radiation mask is for and they even made him his own mask that he could bring home.  Emmett did extremely well when they made his real mask and he actually seems a little excited for radiation.  In the past he did radiation sedated, but this time they think he can do it awake.  They suggest making him a playlist of his favorite music to listen to each day during his radiation sessions.  (He'll get radiation 5 days a week for 6 weeks, most likely).  I think Emmett is going to request some of the classic rock songs he's learned from some of his favorite Pixar and Dreamworks movies....I'm not sure how mom and dad feel about that. 

Clayton enjoyed the consultation with Dr. MacDonald perhaps even more than Emmett.  Clayton we've learned is very heterosexual and he gets so excited whenever there are new "gurls" around.  He was excited to ask Dr. MacDonald if she knew what bladders were and told her all about the pig's bladder that Laura and Mary played with like a balloon after Pa and Uncle Henry butchered the pig in the book "Little House in the Big Woods".  He then asked Dr. MacDonald if she was going to come with us in our car to Camp Sunshine up in Maine that night.  (What a way to warm up a girl before an invitation for a date!)

Camp Sunshine was a wonderful experience -- stay tuned for more on that.

Today we're back in the medical world and Emmett is getting his "post surgery, pre-radiation MRI".  We're praying that everything looks good to start his therapies as planned.  Radiation starts Monday and chemotherapy will be shortly after that.

The boys were excited to get a Christmas tree this past Monday and we even got a small tree to put in their room upstairs.  We are all excited for the Christmas, especially the boys!  The bad news is that Emmet wrote another letter to Santa yesterday and it was even bigger than the first...and I have a feeling that there will be more.

Clayton's 4th Birthday

Our other great adventure today was Clayton's birthday!  He was so excited to come down to the hospital to spend his birthday!  He was actually really sad last night when he had to go home: "Why does Emmett get to stay and have fun and I have to go home?" Katy took Clayton and Charlotte home last night so that she could make sure that Clayton's birthday today was especially special!

This morning Clayton was excited to wake up to birthday decorations!  And then on the way back to the hospital he got to pick out a dozen donuts.  Then when we got to the hospital he was surprised when the nurses brought him balloons and a birthday cake for his birthday!  "I can't wait to find out what flavor it is!" 

All afternoon he got to do his favorite hospital activities.  First we went to go search for "choo choo trains" -- the robots that bring the meal carts to each floor.  He and I stalked trains for the better part of an hour this afternoon.  Then he enjoyed doing some art projects and playing with toys in the family center.  And then he was a perfect gentleman on the elevator and held the door for everybody. 

He got to play some Wii with Emmett later this afternoon.  And then he enjoyed a visit from Grandma, Grandpa, and Aunt Laree.  His his final treat was getting to use the hospital shower which you can adjust for any height person!  (All day yesterday he couldn't stop talking about how cool the shower was and he was so excited to try it today for his birthday.)

On the way home from the hospital he and Emmett were completely wiped out...and they still both had the chocolate donuts remnants on their faces from this morning...which must be a sure sign of a great birthday.

Thanks to everyone who helped make this day for special for Clayton!

Brain Surgery

Emmett's brain surgery went really well on Monday!  Though it was a very stressful and emotional experience for all involved, it couldn't have gone any better.  The neurosurgeon says he got all the tumor out and all the doctors are all very happy with the result.  They were a little worried that the surgery might affect his speech and/or movement on the right side of his body, but he was talking and moving again right after surgery, and the neurosurgeon says that's a great sign.  By Tuesday evening he was cleared to get back on his feet, and before we knew it he was chasing a Star Wars drone around the hospital floor and I was having trouble keeping up.

He’s still recovering and it will take a few more days for him to gain all his strength back and for the dizziness to go away.  But it sounds like there should be no long-term side effects from the surgery.  And to us, that is nothing short of a miracle.

It honestly couldn't have gone any better.  It felt like life stopped when we left him in the OR.  I don't know that I will ever have words to express the thoughts, feelings, and emotions I experienced during the 5 hours he was in surgery.  To have him back now, and to have him still be the same old Emmett he's always been, is the best feeling in the world -- and nothing short of miraculous!

In the weeks ahead we’ll start radiation and then chemo.  But for now, we will enjoy a sweet respite between treatments.  And if all goes well, Emmett will be out of the hospital in time for Thanksgiving!  And what a thankful Thanksgiving it will be!

We appreciate all the emails, texts, and other messages of encouragement and support we received this week.  And we especially appreciate all those who were praying and/or fasting with us on Monday.  God is good -- and He answered your prayers!  Thank you all for thinking of our family.  May God bless you and yours!

We wish you a very happy Thanksgiving and hope you will take time to treasure the most important things in your life this holiday! 

 

 

Back in the saddle in Boston

After Emmett's October MRI and LP it took the doctors quite a while to finally come to us with their recommendation.  It was 3 three weeks before we got initial word from them, and four weeks before we finally were able to get on the phone with Dr. Chi.  And then the neurosurgeon she wanted us to talk to was out of the country until 11/13; so we arranged to travel to Boston and meet with him on that date.  Emmett had another MRI on 11/12 to give him a clear picture of where things stand.

Emmett's spot has grown by a factor of 2.5 since his early October MRI.  It's now measuring ~25 mm in diameter.  The neurosurgeon (Ed Smith) is still calling it small.  He reviewed the risks of surgery with us.  His opinion was to only do surgery if having it removed improves the prognosis; otherwise, just do radiation and other therapy.

There have been other discussions with doctors and a few ups and downs since we met with Dr. Smith on Tuesday, and maybe at some point I'll add those details, but for now let me just say that Emmett is scheduled surgery on Monday, 11/19.  Needless to say, we are anxious about this surgery.  This is the first time Emmett's had a surgery to remove tumor in his brain...in essence, this is Emmett's first true brain surgery.

We will be praying for Emmett and for his surgeon -- and for an overall blessing of divine protection and guidance as we move forward in faith.

LP Is Clear!!!

Emmett did great on his test on Monday and the results came back clear!  This is amazing, wonderful news!  Thank you all for your prayers and faith!

When the doctors identified a new spot of concern in last Friday in his MRI, he was automatically removed from the EZH2 trial that he's been on for the last year.  That medicine has been amazing for him and we're very grateful he had the opportunity to take it.  It shrank and controlled the spot in his neck on the front of his spinal cord which doctors wouldn't radiate or remove surgically because of the risks involved -- so it was a miracle and a blessing that this experimental medicine treated that spot.  We hoped it was providing therapeutic, systemic treatment to his entire body, but apparently this new spot in his brain was impervious to the medicine.  Thankfully it looks like we'll have other treatment options for this spot...it looks like it may be a candidate for radiation or surgery.  The doctors are conferencing this week and we expect to hear something from them in the next few days.

In the meantime, we are enjoying some wonderful family time together.  Emmett is especially excited that he doesn't have to take the "gross, disgusting medicine" anymore!  We are all very excited for him in that regard.

We pray that the spot in his neck was completely treated by the EZH2 medicine and doesn't come back now that he's off it.

We imagine that after treating this new spot, the doctors will likely recommend more systemic treatment (traditional chemotherapy or something else new and experimental).

Each day with loved ones is a miracle....and we continue being blessed with many, many miracles.  And we continue praying for many more.  

Thank you all for your love, support, and faith!

Prayers please!

We got some unsettling news this week and we have a follow up test on Monday to help gain more information. As such, please keep Emmett and our family in your prayers.  Pray that Emmett's Lumbar Puncture (LP) test comes back clear and that the Lord leads us to the best path forward.

Hugs!