Memories...

This was taken in November right before we went back to AK. He's so happy and strong!

Elizabeth hangin with Uncle B and Bionce the cat, playing video games. She loves her Uncle B and Aunty M. :)

Just a couple days old, with Granny Annie. Who would have thought they would get to spend so much time together!

She was so excited to hold Henry, mommy's baby. :)

General Conference

Twice a year our church as General Conference where the leaders of our Church speak to us about things they feel are important for us to hear. The one talk I missed because of Henry's CT scan was by Elder Eyring, and after reading it today I'm sure it was something I needed to hear. Here are some quotes from him that really touched me.

The knowledge of the atonement "will comfort us when we must wait in distress for the Saviors promised relief that he knows, from experience, how to heal and help us.

The Book of Mormon gives us the certain assurance of His power to comfort. And faith in that power will give us patience as we pray and work and wait for help.

He could have known how to succor us simply by revelation, but He chose to learn by His own personal experience.

Even when you feel the truth of that capacity and kindness of the Lord to deliver you in your trials, it may still test your courage and strength to endure."

"The Lord always suits the relief to the person in need to best strengthen and purify him or her. Often it will come in the insperation to do what might seem especially hard for the person who needs help himself."

And finally the Lord says to those who don't think they can endure much more..."peace be unto they soul, thine adversity and thine afflictions shall be but a moment."

I am so grateful this Easter weekend for the atonement of our Savior. For the pain he endured so that he might know how to comfort and strengthen me during times of trial and heart ache. And I am also grateful that I have wonderful friends and family that uplift me and strengthen me during my times of trial. The Lord has truely blessed me with great peace and I know that through this trial I am learning and growing, and hopefully becoming what the Lord wants me to be. I hope that you have all enjoyed the Easter weekend, but more than that I hope you remember why we celebrate Easter, and the wonderful gift the Savior gave us as he atoned for our sins, and willingly gave his life so that we might return to our Father in Heaven.

Thanks again for your support and your prayers they have truely blesses our family, and especially little Henry with strength to fight through this treatment. Love you all.

Wonderful Husband!!

So as I sit in the hospital room today I have a cooler full of ice, and a bag of food that will last me for at least two months. I also will have clean clothes because he did all the laundry. He's be awesome I haven't had to do anything but sit here with Henry.
He's having a hard time adjusting to the new chemo, and I thought for a while he got some sort of virus because he was having fevers every two hours or so. While we exhausted every possible virus and bacteria that could be causing it the Doctor finally said to me, well the cytarabine that he's on causes fevers!!!! Why didn't he think to tell me that before?! I was so worried all night and today because he was having fevers and I thought he was getting sick. Silly me!
Elizabeth is sick but hopfully getting over it. She's getting blood drawn today to check her bone marrow compatability with Henry. I'm glad Joel's the one taking her to do that! They leave tomorrow on the airplane for home. I'm so sad I don't know if I'm even gonna get to say goodbye because we don't want to risk Henry getting sick. But we'll see.
Did I mention that one wall of my room is a window! It's soooo nice and makes me feel a bit better not being outside any.
Henry's so strong and he's so funny. He was watching the nurse as she watched his resperations and then started smiling at her and talking to her. It was the cutest thing ever! He's sleeping a bit more but that's alright. He needs to sleep. They started him on the 24 hour Chemo today and that will run for five days. We'll make it through and then we'll see how strong his body is afterwards. Thanks for all your prayers and support. Take care of my baby Elizabeth for me!

My BabyMutantNinjaTurtle!

I always get the order wrong, but this is after we played and he was all tuckered out. :) The whole time I was taking pictures he was shaking his head at me, and wouldn't wear the hat. After he was done and wanted to nap, he needed his hat.

I know he looks drugged... well he is! But doesn't always look like this. The camera just acts funny sometimes. I think he's more glaring at me cause he didn't want pictures of himself in his turtle shell.

This is the new brace that Ortho made for Henry. It has trucks and race cars and flags and boy stuff all over it and blue so it matches his eyes. It's awesome. Should help him sit and play with out wrecking his spine anymore. We're still adjusting/fine tuning it, but it works alright. He has to build his muscles back up so he can hold himself with it on.

Aggressive Treatment

We talked to the Doctors today about Henry's treatment. He's not making as much progress with the chemo he's on right now, so we're moving to a more aggressive chemo. The plan is to use these new types of Chemo to wipe out his bone marrow. Which puts him at zero with his counts, and very susceptible to any kind of virus or bacteria or anything else. The chemo lasts for five days or so and then it will take about three weeks to build his counts back up. Which puts us in the hospital for a month. We're doing two rounds for a total of two months. Which means that I won't be able to have Elizabeth here with me. I know all you at home are cheering because you miss Elizabeth. Joel will try to get on day shift and take care of Elizabeth for two months. After that if all goes well here Elizabeth can come back because Henry will be on maintanance chemo.
Joel asked to take her home for the summer and I wasn't willing to part with her, but the situation we are facing makes it impossible for me to take care of her here. So I have to part with her for two months and it breaks my heart. Today she spent the day with Mandy and Finley and was so excited to see Mommy when she got back. She has a runny nose and a slight cough. I am hoping its just allergies but I made Joel take her home to the RonDon immediately so she wouldn't get Henry sick. She was broken hearted, and cried the whole way down the hall. I don't know how I'll survive with out her. But Henry needs me more right now.
The side effects of these chemos will make him lose his hair and get sick more often feel nauseated and possible need greater pain meds. The Ortho team created a brace for him to wear while he sits up. Supposed to help keep his back straighter. The Ortho Doc said that the babies he's seen with LCH most always recover from the back fractures and don't have issues when they get older. They are young enough to rebuild their bones. So that's encouraging. They HemOnc Doc's said that they have had success with this new treatment so I'm really hoping that it works. I am hoping that we didnt' wait to long for the vinblastine to work, and the LCH progressed to far. I try not to think about the bad side of things but I wonder.
That's what's new here. Not much fun but, if it works for Henry it will be worth the two months with out Elizabeth and Joel. The other option is bone marrow transplant, not very successful with LCH but it's an option. The only likely donor is Elizabeth, with in our family. They are gonna get a sample of his blood to test in the "system" to see if there are any matches. So that if we need to move to that option of treatment we'll be ready. So those of you reading this if you could continue to pray for Henry and pray that this treatment works for him. He's so strong and I know that we'll make it through. Thanks for your continued prayers. Much love!