Saturday, February 18, 2012

Stephen Update: Decision Made *sniff* {personal post}

Cutest little bald kid EVER.

Physical therapy

Don't you just want to hold him and kiss that sweet face. You can see the bag on his shoulder where his "brain juice" drained. He wasn't very fond of the bag...they made it into an internal drain and now it goes into his abdomen.

With his {beautiful} big sister. These two are very close. His hair has fallen out now.


Time for another heart-wrenching post. Here is the latest update on little Stephen:
I post some personal thoughts at the end.

***

For the second time in Stephen's nearly 4 months of treatment I called his doctor on the weekend, on his cell phone. I caught him putting his screaming kid down for a nap, but he was more than happy to call me back. We were talking again within 5 minutes.

I called because Amber and I feel we have been forced to make a decision.

Stephen's pelvic tumor is growing extremely fast. It's faster than I think even his doctor realizes. We have watched his body shape change every day. Right now his right hip and bottom are very distended. Part of it may be some swelling from the biopsy needle, but over the last week the daily differences have been visible.

We have taken photos since the 14th and the comparisons are scary and very telling. Additionally, he is in more pain each day. In other words, it is taking increasingly higher doses of the long acting morphine (30mg up from 20mg) as well as the as-needed Dilaudid (2 mg) to keep him comfortable.

I called our doctor today to ask that we not wait until the end of next week to determine a plan. Amber and I fear that will be far too late. The tumor is inoperable for a number of reasons. We found out that if they were to try surgery his sciatic nerve would certainly have to be sacrificed. That and the high probability that he would die from blood loss in a highly vascular area in the O.R. make a surgical option null and void. As fast as the tumor is growing, it no doubt has a good blood supply to nourish it. This tumor has picked one of the most inconvenient places in the whole body to grow!

We feel he needs to begin radiation ASAP on the pelvic mass. Although we will still have the brain biopsy done Monday, it no longer matters what is in his head at this point. This pelvic mass is growing too quickly. Our doctor agreed after hearing me out.

So Monday while Stephen is at LeBonheur having the brain biopsy done, his doctors at St. Jude will be laying the ground work to begin radiation as soon as he gets back. Maybe by Wednesday. We hope.

We understand this is more a palliative form of action. It will not likely lead to a cure. But without a full surgical resection, no amount of chemo or radiation would. This is the very hard truth we are facing.

The proper order of therapy would be to start chemotherapy first. But even if we could, that would take two to three weeks in order to start seeing an effect. We definitely don't have that much time. There is a chance that this tumor, whatever kind it is, will not respond to either chemo or rad, but if it does, the radiation will provide a quicker result and hopefully a relief from symptoms for a time.
_______________________________________________________

Stephen has been very sweet today. Over the last couple of days he has been very cuddly. He is always telling us that he loves us and is wanting us to lay with him and hold him. We have at every opportunity.

While Amber got in the shower this morning, he laid in bed with me face to face, nose to nose. He talked to me all about his desire to go back to China and see where he's from. We've always had plans to take him back to visit his orphanage and the area he is from. We were planing to do it around the time he was 12 if we could afford it... Now it seems that finances are the least of the problem. This is heartbreaking for us.

He also talked about missing home and "playing at school". Then he cried for a while. All I could do was join him. By then, Amber had returned and was laying behind him. We all cried together.

Stephen knows that he has "owies" in his pelvis and head. He knows he's been through a lot, but has no idea where it's leading. We have agreed to not tell him. It would only make him more upset. Although his 7-year-old mind can not fully comprehend death, he would certainly be fearful of any separation from his family. As I talked to my 9-year-old on the phone last night, she begged me not to tell Stephen. We won't. He will eventually go knowing we are there, right beside him. We will have to let him go knowing it will not be forever.

* * *

The family asks that you keep him in your prayers now more than ever...this is a very critical time.

I have already bitten off all of my nails.

I just can't stop holding my kids. I'm sure they are sick to death of me smothering them with hugs and kisses and snuggling them. Every time I look at them I think of how blessed I am to have them in my life. Living. Breathing. Healthy. I feel guilty for every time I have ever raised my voice at them for drawing on the walls with permanent markers. Or throwing my freshly folded laundry all over the floor. Or squeezing an ENTIRE tube of toothpaste on the bathroom counter. All of the small things seem so silly. How can I complain about stupid things like, I wish our house were bigger. Or, I wish I were skinnier. Or I wish this stupid pimple would go away. WHY DO I WORRY ABOUT SUCH DUMB LITTLE THINGS!?! How would I survive knowing that my child's life would be ending soon? How would I look at them and process all of the thoughts. "What will I do when I can't hold him anymore?". I literally can NOT stand to think about it. How do people literally face this every single day? How would you tell your child that they are dying? Especially when they are so little that they don't really comprehend death. *UGH!*

Life is such a crazy thing. Many people have many beliefs about life and God. Sometimes it is such a touchy subject. But when it comes down to something like this, it changes everything. It hits close to home. You really start to think and it becomes very real. Stephen is a part of my family. I remember the day I heard that Brent and Amber were bringing home a little boy from China. I remember the first time I saw him as a little toddler, I remember those eyes, cheeks and that smile. I remember his precious little nubby hand, I swear it makes him even cuter. I remember how quickly everyone fell in love with him, he was part of our big family, there was no doubt about it. Then, just a few years later, I remember hearing that Stephen was sick. They didn't know what was going on, but he was sick. Then, I remember the first time I heard the word "cancer" come into the conversation. No. Not little Stephen. He's just a little boy!!! Older women get cancer....breast cancer. Older men get cancer....prostate cancer. Smokers get cancer. But not little boys....that's just impossible!!! And then I saw the first picture of his catscan.


There was no way there was a tumor THAT BIG in there. Just...no way. From that moment on, it was real. It was emotional. It has been an absolute roller coaster.

I have seen God work miracles in this boys life. From the moment his birth mother took him to that orphanage in China. The moment Amber knew they were supposed to adopt. The moment Brent and Amber knew he was the one. He belonged in their eternal family. The miracles through medicine and prayer. And now, the miracle of knowing that families can be together forever.

I know there are many people who don't believe in God. There are moments in my life when I myself wondered if there really was a God. And I have my answer. For me, I KNOW that there is a God. I know that He loves us. I know that he loves Stephen. I know that He is aware of all that they are going through. I know that we have a Savior who knows EXACTLY what they are going through. When he suffered for us in the Garden of Gethsemane, he not only suffered for our sins, but for our sorrows. He knows. And he knows how to send the comfort they need to get them through this.

For now, that comfort comes through knowing that death is not the end. That in the end, this life {somehow} will only seem like the blink of an eye compared to the eternity that we will spend together as an Eternal family. Stephen won't be lost and afraid in some deep dark place all alone.

I want to tell you a story. I was having a really hard time dealing with knowing that Stephen's time here on earth is very short. I have been feeling angry and confused and just....hurting. How can I sit through his funeral? How can I look at his face in the casket without falling to the floor in a crumpled heap of tears? It was almost unbearable. Then, in the quiet of the night, an image came to my mind. The image was of my Grandpa Wally and my Grandma Nora who have already passed on. Do you know what I saw? I saw them coming to take Stephen home. They were beautiful. They were dressed in white, they looked so young and vibrant and happy. Stephen did, too. He looked peaceful and happy. He took their hands and smiled at them with that sweet, innocent smile. And in that moment, I knew that everything was going to be okay. I knew that he would be taken care of, and that he would also take care of his family from the other side.

I still grieve, it is a very sad situation. But I also rejoice in knowing that because God loves us so much, we will see little Stephen again. He won't be in pain. He won't be sick. He won't be weak. He will be perfect. And it makes me feel at peace.


Stephen at Christmas with his St. Jude ornament. This picture makes me cry every time I see it...that ornament will hang on their tree every year. *tears* Even after he is no longer here.


I know this isn't something that is usually shared on a blog...especially one that is usually about crafty things or whatever...but I also feel that this blog should let you see me from the inside out.

Thank you for letting me share my feelings, and I thank you for all of your concern and prayers. Now, go hold your little ones tight. Don't get upset about the little things. Treat each day with them as if it were your last and remember what this life is really about. It's so easy to get lost in the daily routines and frequent email checks. Spend more time on the things that really matter. I know I will.

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4 people leaving some love!:

Lori said...

Nat, I love reading your blog and my heart breaks for your sweet family. My prayers are with you all especially his parents. Thank you for sharing.
Blessings, Lori

Jessica said...

This is your blog and you can post whatever you want or need. Honesty is never out of place, even on a craft blog. I am so sorry you all have to go through this and am so sorry that he has to hurt so badly. Thankfully, this too shall pass and like you said there will be peace and happiness in the life to come.

Sarah @ This Crazy Blessed Life said...

My heart hurts for Steven and your family! I cannot imagine what they and you are going though.

I also want to second Jessica's comment. Don't ever feel bad about bearing your heart and sole on your blog. This is your space, after all!

Lots of hugs!!

Wendy Cutter said...

I have been wondering why Heavenly Father would let such a young person go through this. I was becoming angry. When I read the part about Jesus Christ suffering for us in Gethsemane, it reminded me that He knows exactly the pain we are going through in this life. He suffered for us. Thank you for posting your testimony on your blog. It is a very powerful reminder not to get caught up in the little things. I don't know him, but I love little Stephen.