Saturday, November 12, 2011

Update on Stephen {Not Good News *sniff sniff*}

I was really hoping to do a happy post today, but instead I just can't stop crying. We just got an update on Stephen.

(Stephen and Brent at St. Jude's...he adores his Daddy)

(Movie night at St. Jude's...he LOOOOVED that popcorn! The nurses adore him and even brought him bags of popcorn from home!)



Deep breath...grab some Kleenex.

They did a spinal tap on Stephen a few days ago because in his latest MRI parts of the brain are lighting up that aren't supposed to. Which could mean two things, the cancer is spreading OR there is an infection going on. There is some sort of bacteria growing in the culture from Stephen's spinal tap. The bacteria has taken a long time to grow, so it isn't your normal meningitis. AND they have found that numerous tumor cells have spread, so both of their fears have come true. :(

Because the cancer is spreading, Stephen has now been classified as a high risk patient and will receive the higher doses of radiation and chemotherapy. However, they had wanted to wait to start treatments until AFTER he is feeling a little better and stronger....but with this new mystery bacteria they're not sure what to do.

He still is in a lot of pain where they did the spinal tap and they don't know why. Plus, the IV site in his hand went bad and his hand is all swollen. So, they took out the I.V. and he is now in surgery to put in a central line into his chest for all of the long term blood draws, medicines and other things he will have to endure now until the end of his stay at St. Jude's.

I swear, my heart is just breaking. It's so confusing and frustrating! After the first surgery we were all praising God that it was a miracle. That the tumor just delivered itself to the doctors and all was well. THEN, we find out they didn't get nearly as much of the tumor as they thought, AND that it is spreading. I am trying to not take back all of my praises to God for that miracle, which didn't end up being a miracle at all. :( I can't take them back because we still need Him. We need a miracle...a REAL one.

It breaks my heart that he is in so much pain. He has been so strong and brave through it all, so when he shows he is in pain, he is REALLY in pain. It breaks my heart that there are so many unanswered questions. It breaks my heart to think of his parents, what they must be feeling. They are emotionally and physically exhausted, and sick to death of sleeping on vinyl couches. And it feels as if there is no end in sight. And if there IS an end, it's not a happy ending...ugh. I don't even want to think about it.

As I sit here making each of your nest necklaces for the Hope for Stephen fund, I think of you and these precious children that each of these eggs represent. As my fingers hurt from making them I think of the pain that little Stephen must endure. As I add requested special white pearl eggs or angel wing charms to necklaces for each of the children who have died I cry for the parents who lost their children and thank God that I have 3 healthy, beautiful children here on Earth with me. Then I cry even harder hoping that I don't have to eventually add a white pearl egg or pair of angel wings to Amber's necklace. (UGH, need more Kleenex!) And as I put them in the mail I pray that they will all make it to you safely, just as I pray that Stephen will make it through this journey safely.

And now, I just ask that you continue to pray for little Stephen...pray that the doctors will know how to help him. Pray that he will be comfortable, pray that Brent and Amber will have the strength to keep trudging through this hard journey, pray that we won't lose faith in God and His miracles. Please put him in your prayer circles, or Temple prayer rolls, and as you say your personal prayers, say a special one for him. Heck, even if you don't believe in God, focus your positive energies on him or whatever! ;)

I'll keep you updated as I hear more. Thank you all, if I could find you I would give you each a huge hug!


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10 people leaving some love!:

Jess said...

I am so sorry that things are not going better!!! Hang in there you never know what Heavenly Father has in store!! We will keep praying for him!!!!

Jessica said...

Not sure where my first comment went, so if I repeat myself I am sorry. I cried through that whole post. I am so sorry you are all hurting so badly! My best friend always says that things always work out in the end; if it hasn't worked out yet then it is not the end. That has to be true! Even if we don't understand why things happen they way they do, God does. He loves little Stephen so much.

Rachel@I Heart Crafty Things said...

Tears...My prayers will continue to be with Stephen and his family. So sorry there was not better news to report. Now I'm going to hug my kids extra tight right now. :(

Kelly said...

As one who's been through a parent's worst nightmare, I still don't know what to say to offer comfort. My heart goes out to them, because some of the worst of my experience was the part when we didn't know, and to see that for them that part is lasting so long. My heart hurts for all.

Angela said...

So sorry to hear this update. Our God is a God of miracles. He is the same God who parted the sea. The last several chapters in the book of Job always help me....they remind me how small I am and how HUGE God is. Praying right now for you and sweet Stephen and for his mom and dad.

(((hugs)))

Jessica said...

Thank you so much for sharing that with me. It really meant a lot. Please feel free to e-mail me any time jjmyers1009@gmail.com I just lost my mom this summer, and I know that sometimes talking about the hurt and the hope of something better can help you feel better and strengthen your testimony in what you do already know. (I promise, you will surprise yourself by your strength and your belief. No need to trade in that craftiness!)

Lara said...

The question "Why?" is the hardest one. I admire people who have such faith such as trials like these. I can feel your pain and worry - I can only imagine his parents. Thanks God for eternal families, priesthood, and the gospel.

Tiffany said...

I am so sorry to hear all this. Our God is an awesome God and I will be praying for him and the family and friends around him.

Amanda said...

I have been reading your blog for a year or so now. {Just now began following} I am SO sorry. There are truly not enough words to offer comfort for this poor family and little boy. Remember, God is GOOD. He works in mysterious ways and will come through for this precious child and his family. What a blessing you are, sharing his story and requesting prayers, making the lovely necklaces and donating the funds to them in this time of need. I pray his special guardian angel is with him during this time of pain and suffering. May God bless his little heart. :*(
~Amanda

Danielle said...

Oh...there are no words. You are all in my prayers.