Stephen Update: Hard to Write

Here is the latest update on Stephen. It sounds like he is very close to the end of his life here on Earth. The emotions that we deal with are so hard....I wonder if it is possible to cry tears of sorrow AND tears of joy at the same time? Sorrow that he will no longer be alive, that I will never hear his sweet little voice again or see that sweet, shy little smile. Sorrow that someone so little, who still had so much life left to live was taken so soon. And joy, that he no longer has to suffer. Joy that he is at peace in the loving arms of Heavenly Father and Jesus. Joy that I will see him again, perfect and whole and healthy. Joy that families are FOREVER. 

It is hard for me to believe that this journey is so close to being over. It seems like just yesterday I did my first post on Stephen, asking for prayers in his behalf as the family had just discovered the grapefruit sized tumor growing in his brain. It seems like just yesterday he went in for his first brain surgery and we all held our breath awaiting the news to find out whether the surgery was successful. It seems like just yesterday he was accepted into St. Jude, where he had the best health care treatments possible. It was such an incredible blessing. It seems like just yesterday I was able to take part in a tremendous outpouring of love from YOU, my blogland friends and family, with the nest necklace fundraiser. And now...his book is coming to a close, the very last pages of his life are being written as I type. His story is a BEAUTIFUL story.

 It has been such a roller coaster, hasn't it? Thank you for all of your support and prayers for him and his family through this! I know with all my heart that your prayers were heard and that they held the family up, giving them hope, comfort and support that they needed so desperately. And now, this will probably be the last update we will have on little Stephen, until he passes on.

Hard to write

After a few "good" days with Stephen, he has finally made another significant turn towards his mortal end.

If you've tried to call on the phone recently, sorry. We haven't answered. Amber and I are sitting beside him right now as he sleeps. Not much could take us away from this spot right now. His breathing has slowed way down to a breath about every 30 seconds now. It's consistent, steady.

Yesterday, we finally gave Stephen all the gifts from China we were holding in a box until he got older. We would have originally given him these things on significant birthdays or occasions as he grew older. Perhaps the hand carved two-dragon stamp of his Chinese name when he turned 16. Maybe the hand-made fan created with feathers that a Chinese woman in a village wanted him to have when she saw him with us for his wedding. The American-looking Barbie with a Chinese baby that the White Swan Hotel gave us towards the end of our adoption trip for when he had his first baby.

These and many other gifts, we presented to him last night as he struggled to have the strength to sit up on the couch. Still, you could tell he was delighted to have them and his smile leap out from his weary mouth and eyes as he graced their weight with his slender hand and lucky fin.

Obviously, it was emotional for both Amber and I and neither one of us felt up to writing last night. We attempted to go to bed last night, but Stephen could not stay asleep. He was very restless. By midnight, he was awake again. I lay next to him to listen and watch.

He whispered to himself in riddles much of the night. His arms reached into the air over his head as if he were conducting a soothing orchestra. At one point I crept closer to try to decipher his words and decide if he was awake or asleep. I listened to him recite random numbers and phrases like, "not now, maybe later," "Rebecca, yes" and many other things I couldn't make out.

I moved even closer to see if his eyes were open. They weren't, but then he opened them and looked at me. His lips puckered up for a kiss. I got the corner of his mouth and that wasn't good enough for him so he insisted again. My lips met his dry, cracked ones and he was satisfied. I lay back down and he went immediately back to nonsensical whispers and pulling at his bear blankey.

I must have finally fell asleep about 4am with him still gong on to wake just before 6am hearing him blow kisses towards me while still whispering to himself. The morning had begun and he had only existed somewhere inbetween sleep and awake all night.

By this morning he was growing more agitated and still could not rest peacefully. His body was in a constant state of movement. He even tried to get up out of bed a couple times by himself. This is very dangerous since he can not stand or walk by himself any longer.

All this is not caused by drugs. There is nothing on his medication plan that would cause this. These are changes within. He does not know where, what time it is or who he is with half the time. This morning he thought Rebecca was beside him. When we told him she wasn't, he got upset.

Finally at about 11am, we decided we needed to give him some Lorazepam that we had perscribed for anxiety. We wanted to try that out before using the Versed (sedative) that was given by Hospice for the same kind of end-of-life symptoms.

An hour later, about noon, he drifted off into a deep sleep. Now, at 2:45pm his breathing is still constant but even less frequent than at noon. There is an occassional gurggle in his throat and once in a while he twitches ever so slightly. His eyes are narrowly open and his jaw is slack - an eerie glimpse at what is to come.

For now we rest with him. He is at peace while he sleeps. Amber and I increasingly feel the time is coming near when he will rest in eternal peace. We have cried much of the morning together in anticipation of that time. We pray and muster all the faith we can that the Lord will heal us, but in this very moment can not imagine how we will ever rest again once that time comes. So for now we sleep with our darling Stephen. We hold his little body close and treasure this very moment as best we can. Sleep sweet Stephen, sleep.

He Is Risen

This is a BEAUTIFUL little clip in remembrance of what Easter is really about! I am so grateful for my Savior and His sacrifice for me. Not only FOR me, but BECAUSE of me. I can't help but weep at the thought of the drops of blood that he shed for ME. And yet, through this miracle which he provided for us, He knows us. Every thought, every pain, every sorrow. He endured it all, and He will never leave us to endure things alone. Every day I am in awe at His love and mercy. Sometimes it's easy to get lost in the hustle and bustle of every day life and forget what LIFE is really about. I'm so grateful for Easter, and the opportunity to stop and really think and put life back into perspective. I know my Savior LIVES. I know he LOVES me. And I know he loves YOU! I know that through his Atoning Sacrifice, we can be saved from our weaknesses and imperfections and live with Him again! Happy Easter, my friends!

Spring Break Re-cap: Part 1

PHEW! I finally have everything unpacked, washed and put away. I am still trying to figure out how on earth we ended up with TWICE as much stuff to unpack than what I originally packed to begin with. How does this happen!?!

We went to Houston, TX for our Spring Break to visit with old friends from when we lived there. It was so wonderful to go back! My cheeks seriously hurt from smiling so much! Oh, how I miss my friends there. *sniff sniff*

Our trip was GO GO GO nonstop for 10 days! We got a lot of really fun things done while we were there! I'm spitting this into 2 parts because otherwise the post would be a mile long!

First stop was the Galveston area. We stopped by Sea Wolf park to see a submarine and a destroyer escort. The boys got a huge kick out of it.


And I have to admit...it WAS pretty darn cool.

Things like this ALWAYS make me tear up and say a silent grateful prayer. Especially now because my little brother, Brett, just joined the Marines. I LOVE YOU, BRETT!

Aaron could hardly hide his excitement to see torpedoes...

and the 40mm deck guns...(Whitney was a little TOO excited)

and the depth charges...*sigh* SUCH a boy. :)

Awwww. :)

Next stop was Stewart Beach. The weather was GORGEOUS, and it was just the perfect day for the beach!


The girls had fun looking for hermit crabs and sea shells....

While Aaron "ran away from sharks"...

It was lovely. :)

Day 2, we were going to go to NASA, but then we found out that you can pay half price for admission to places if you buy the city pack! We were already planning on doing the museum, NASA and the Zoo, so we decided to go to the Battleship Texas instead.

This is what you see as you pull up to it...HOLY COW, that thing is HUUUUGE!!!

This battleship served in WWI and in WWII and played a vital part in winning the war. It was there at the Battle of Normandy as well, supporting the troops. She was also at Pearl Harbor in December of 1944, and at Iwo Jima and Okinawa providing gun fire support. This ship and it's crew did some amazing things and I was honored to get to tour it. I tried to take pictures below deck, but apparently I really stink at taking pictures in low light and the flash just reflected off of the glass windows that you look through to see the rooms. It was pretty amazing! I would absolutely DIE of claustrophobia on those things, so I have a new profound respect for the Navy. WOW. I couldn't help but think about Pearl Harbor while I was on that battleship, getting goosebumps as I thought of how horrible it would have been to drown in one of them. Being trapped would have been just horrible. :( God bless AMERICA, and all those who gave so much to keep us safe and free.


Michael got to take a private tour from one of the nice tour guides who was closing the ship when it was closing time (curses, I was wearing a cute dress from Old Navy AND it was windy so I couldn't go up! I'm sure that would have been quite a show!) The spot where they are standing is where a 280-mm shell from an enemy ship fired at them and blew up, killing 1 and wounding many others. He was very humbled to stand where someone serving our country lost his life.

Then it was out to dinner and back to the hotel for a little R&R. :)

It was a great (and very educational) first part of our vacation!

93.3 KOBFM Stephen's Run: Want To Participate?

Hi everyone! If you have been following the story of little Stephen and live in or near Albuquerque, New Mexico, you may be interested in this! 93.3 KOBFM along with Stephen's AMAZING 17 year old neighbor, Makaila, are doing some wonderful things in Stephen's honor!

Makaila has organized a 5K Run/Walk in an effort to help his family. This event will be a non-competitive 5K Run/Walk. There is no fee, however donations will be accepted for Stephen’s Family. All proceeds are going to help Stephen’s family, as Makaila herself states “This day is about coming together as a community, where the Hope and Intention is to raise up Stephen and his family in Love, Compassion, and Prayer; Where we will show up as individuals and come together as one big family, after all we as a community are a family, and what does a family do? We take care of each other.”

Stephen's Run

5K Run/Walk

(Non-Competitive)

Saturday April 21st, 2012

The Albuquerque Academy

Starts at 8:00 a.m.

(We will run the outside Perimeter)

Parking will be available at Hoffmantown Church

on the North East Side

I am going to be participating in it, so if you would like to run with me I would LOVE to meet you! If you are interested in either participating or donating, you can email me at nataliebrimhall@yahoo.com!

Stephen Update: Unexpected Surprise of the GOOD KIND!

Here's the latest update! It is SO wonderful to read such a happy post! :)

* * *

The title of this post does not lie. Stephen had an exceptional day today (taken in perspective). When yesterday he was nearly comatose, today he was nearly running around the house and juggling bowling balls! Ok, that's a fairly large exaggeration, but get a load of this:

Stephen woke us up this morning at 4 am wanting sips of root beer. This continued for about an hour and a half before he went back to sleep. By this time I had to get up to take Sabin to her early morning seminary class.

Once about 7am rolled around, and the kids were getting ready for school he was awake again. His eyes were open and he was sociable. He even hollered goodbye to the front door from our bedroom as Adam and Sabin walked out the door. We haven't heard him with a voice like that in weeks.

Once Rebecca left for school I transferred him from his hospice bed to ours and he watched TV, talked to me and drank more while I faded in and out due to exhaustion. Amber was so tired she could actually not be woken even if we talked to her.

Stephen wanted to go to the circus this morning. What? Yes, the circus. I don't know what brought that to mind.

Then he requested watermelon!!! He has refused to eat for a week and a half, but suddenly wanted watermelon. Just about that time Amber's sister Libby called and she said she would get some and bring it over. He ate several bites of it! We couldn't believe it. (I took video of this and because I can't post it here, will do so on Facebook)

He has been trying to sit up by himself. Sometimes he's pulled it off and sometimes not, but he's been exerting himself. He even dropped a fork we were using to stir a medicated drink and tried to get off the couch and bend over to pick it up. I was able to assist him before he collapsed.

One side note: Stephen has been developing yet another tumor. This one seems to be in the muscle on his right thigh. We haven't written about it yet, but found it on Monday by chance. We have watched it at least double in size over the last few days. It's about the size of an elongated ping-pong ball, cut in half and slid under his skin. It is not causing him any pain.

Even though this new tumor is growing, his sickly appearance and physical strength are no different than yesterday, he has behaved completely different today. It has been delightful.

At the same time, we are aware that many close to death will have a day or a number of hours like this just before the end comes. Whatever the reason for this boost in mood and energy, we are DELIGHTED.

He only took about a two hour nap today, has wanted me by his side constantly and has been going and going...

Its after 10:30pm and I just kissed him goodnight. That is absolutely incredible. This day was nothing like we had expected. I am hearing Spongebob sing "It's the Best Day Ever" in my head. We let him stay up so late because we have been afraid that this will be all we get.

No matter what tomorrow brings, we are so fortunate to have had this day.

My Special Visit With Stephen

I had the WONDERFUL opportunity to get to visit little Stephen this week. We were driving home from Spring Break in Houston and luckily, Albuquerque was only about an hour out of the way. My husband was kind enough to let us stop by on the way home. Stephen has been such a huge part of my life for the past 5 months, so I was so privileged to get to spend some precious time with him. Especially since we don't know how much time he has left here on Earth.

My heart was racing as we pulled up to their house. How would I be able to hold it together? I knew it was important to not cry in front of him, and I had to keep it together until I was back in the car. As I knocked on the door and heard his mom say, "Come in!", I took a deep breath.

I was expecting the home to feel very solemn and sad. But there was such a feeling of peace and love there. There was a very special spirit in that home. It felt....holy. Just as you enter their house, there is a very special gift that someone gave them, a big blanket with his picture printed on it. And...the tears try to come, but I hold it together. I walked into the living room and he was laying on the couch in his favorite Sponge Bob pajamas with his Sponge Bob blanket watching cartoons. I was surprised to see him awake, and SOOOO happy when his eyes met mine! I dropped to the floor and told him how much I loved him and how he was my hero. We small talked about cartoon characters for a while, but I could tell that it took a lot of energy for him to speak. Even just to smile took so much effort, but those smiles just melted me like butter! I told him about ALL OF YOU and how hundreds of people are cheering for him and praying for him and he was a hero to so many people. That made him smile. (I know a lot of you have sent him special packages, and they have received them all and are so very grateful for each and every one!!!)

He is very frail, and even just lying on the couch was hurting him. He was due for his pain medication, so I was able to watch that. He has a port in his chest where they deliver his medicines, port flushes and other things and he gets to help put the medicines into his port. It was cute to watch him do it, it was like he enjoyed it. :)

He was getting pretty worn out and I think the pain meds were kicking in so his Dad scooped him up and carried him to their master bedroom where his hospice bed is. He was just so tiny! But you can absolutely tell how much he loves his Dad, they have a very special bond. It was so precious to see his arms wrapped around his Dad, squeezing him with all the strength he had.

Then, it was time to clean and medicate his radiation burns. I felt a twinge of pain as his Dad turned him to his side and lifted up his shirt. His entire lower half of his back and buttock were burned and peeling, like a very severe sunburn. Oh, how my heart broke! He really was just skin and bones, and I could see where the tumor that was plaguing him had been growing. It was very real. I was seeing the horrible effects of that cancer with my very own eyes, not just reading the updates at my computer. Then I realized how strong that little tiny boy really was. He is a WARRIOR. His Dad asked me if I would like to help, and I did. He sprayed some sort of a foam disinfectant on his back and Stephen whimpered...it was cold on his burn. I can't imagine how that must have hurt. Any other kid would probably be kicking and screaming. But he just whimpered and held back great big tears. I sang him a lullabye as I wiped off the foam. My hands were shaking, but not as bad as my voice as I was trying SO hard to hold back my tears. Then his Dad put a burn cream on his back, and as it soaked in I told him the story of the 3 Little Bears to help pass the time.

He was getting very sleepy and starting to drift off. My last words to Stephen were, "I love you forever and ever and ever. Sweet dreams, little Stephen." He gave me a little smile and that was that.

His Dad was kind enough to take a picture of Stephen and I...and I will cherish it forever. Me and my little hero. :)

Stephen Update: The Most Difficult Conversation

Here is the latest update on Stephen:

The Most Difficult Conversation

Today has been another quiet day. Last night however, we noticed Stephen has started some irregular breathing. Amber and I each took a turn laying with him, listening and feeling his chest for movement. He would take about 3 breaths and then would stop for about 30 seconds or so. We were worried about it, but he made it through the night and has been stable all day.

We got a shower chair for him and bathed him on it this morning. I already knew the shape he was in, but taking off all his clothes and helping him into the shower was heart-stopping. He looks exactly like many of the photos I've seen of kids in concentration camps or dying from famine. You can see each one of his ribs. His hips jut out on both sides and he does not have a bottom anymore. Instead, his little bony tailbone is readily seen as the most prominent feature to sit on. I'm sorry to be so graphic, but we can hardly believe his transformation to this form over the last few weeks.

Today we had the pleasure of watching 2 sessions of the spring General Conference broadcast from our church headquarters in Salt Lake City. Two times a year the leadership of the church speaks to its members across the world on gospel subjects. It is a time to be inspired and renewed with their faith promoting talks.

One talk specifically stood out to us. It was a talk by Elder Ronald A. Rasband on children who suffer from serious illness. It was meant just for us.

This afternoon when Stephen woke up Amber and I stumbled into another opportunity to talk to him about death and dying. It was a conversation that I never ever thought I would be in a position to have.

He now understands that the reason his body doesn't want to eat is because he is not going to get better from his cancer... and his body knows it. He was alert and as we asked him questions and answered them his eyes teared up.

He says he wants to see Heavenly Father and Jesus and thinks that would be very nice, but as we expected, he is afraid to be separated from us. We explained to him that it might be like when he used to leave for school. He would say goodbye, kiss and hug us. But then he would get on the bus and be whisked off to school where he would learn new things, meet new people and have lots of fun. He would not miss us, and before he knew it he'd be with us again. We told him it would be kind of like that. He still did not like the idea.

But he is clear on one thing. He does not want to be sick anymore. He is tired of it and we told him that when he chooses to go, he will feel all better again. It is okay to go. It is his choice.

His tears told us he is not ready yet. All I could end up saying to him at the end of our conversation was that when he decided he was ready, all he would have to do is pray to Heavenly Father and let him know. Heavenly Father would take care of the rest.