Hello Everyone,
I talked to Christy and she said that the appt. with Dr. Liebsch went well but they did not get much info from him. He likes to get all the informational facts together before he speaks to anyone about next step in treatment. He wanted to get the MRI so he could compare the two MRI and CT scan. Dr. Liebsch did say he got good pictures so we just need to be patient. Again here we are in limbo playing the waiting game again. And again I hear God say be still and know I am God. Let me handle this.......

So that's all the info I have for you. Hope you all have a great weekend and if anything changes I will let you know. Please keep praying.

Still Praising Him,
Mimi

Hello Family and Friends,
Here's some news, first let me say I'm sorry for the meltdown on last post. I was feeling a little down because everything seems to move in slow motion. ( That is the control issue I'm still having. Please forgive me) I just want to fix everything as a Mom and a Mimi but God is still on His throne and He doesn't need my help for sure.

Now on for the news...today Hayden had his CT scan and labs and did very well with all. When he finished with all the tests his Daddy had a big old Hershey candy bar waiting for him. Then he went to Old Country Buffet and ate supper because it was about 5:30 PM and he was hungry then after he finished there he had to stop at McDonalds and get nuggets. I was glad to hear he was that hungry. Christy said Dr. Liebsch said he was pleased with all the pictures he got from scans. They will meet with Dr. Liebsch on Friday, he is going to call with a time. So pray for good reports on scans (brain and spine). We are so very thankful for God's protection for Hayden thru all he has been thru this far.

Mason is adjusting to being with Mimi and Papa but he does ask for Mom and Dad and Hayden and when they will be coming here to get him. HOORAH so far we have been without the old PACIFIER for 3 days and 18 hours, please pray we will continue to do well with this issue. He really only asks for it at nap and bedtime at night. I hated to take it away since he is still adjusting to being without his brother and Mom and Dad, but he threw it down and I told him the cat ate it since she was sitting right there ( Lord forgive me for that ) where he threw the pacifier. He said he didn't want Precious(Cat) to eat his paci. LOL. So needless to say we had to go buy a teddy bear to take paci's place. (Great Grandma's idea).

I'm going to close for now, I will try to update with more news on Friday. Please keep praying, we love and appreciate all you for hanging in here with us and lifting us up daily. Thanks again.

Still Praising Him,
Mimi

PS: Christy will be having a birthday on Sunday, March 1

Hello Everyone,
Just wanted to give an update. Hayden is going for labs on Thurs. at 8:00 AM. Then they meet with case worker after that and then around 1:00 they will do a CT scan. I'm not sure what labs they are doing but I do know he will have to get stuck again because they can't use the port for another day or so for healing purposes for port.

Thank you all for the prayers and words of encouragements. We continue to ask you to lift Hayden and family up for good report regarding tumor and that he will tolerate all that he is having to endure with labs and scans and doing w/o nourishment for all those hours. God continues to bless.

Will write more on Thurs. after all is done.....

Going thru the fire and looking for His light that is always there to get us thru.

Still Praising Him,
Mimi

Update

Hello everyone,
Quick update, just talked to Christy and shesaid Hayden got his port inserted, and G-tubed changed out and is in the recovery room. She said the surgeon said all went well and Hayden did fine and she will call me when they get back to the hotel. So thanks for praying us through this procedure. Will update more when I get more info. Not sure when MRI will be at this point.

Still Praising Him for His faithfulness,
Mimi

Procedure Tommorow

Hey all, we just got word that we need to be there in the morning for Hayden to have a Porta-cath in. We have to be there at 7:30 am tomm. This catheter will enable them to access for IVs and not have to stick him daily. They are also going to change his mickey button out at this time as well. (We have kept this in so he could have extra nourishment)Please pray for procedure to go smoothly and that Hayden would start to gain weight. He will tolerate the radiation therapy if he has extra weight on. As with anytime we are very nervous about him having to be sedated.
Please continue praying for us, we are going out today to do some more site seeing.

Thank you to Jenna for changing the blog up for us, it look great!!! Love ya!

Talk to ya soon,
Christy

Hi from Boston Mass!

Well, we have had a good weekend, we went to the discovery museum today and experienced the subways. Hayden really loved riding the subway! It's raining here,can you believe this?? We came here expecting and wanting to see the snow and it's just north of us. Figures!!!...
When we were riding the subway I kept telling Hayden to not touch to much (trying to keep him well) I said I don't want you to get sick! He said Mom I'm already sick. I said what do you mean? He said I have a tumor, I'm already sick... I had to really fight back the tears, you always wonder how much they understand. It has almost been 3 years since he was diagnosed and there are some things that happen like today that feel like I'm hearing it for the first time! It makes me physically feel sick. I am still praying for complete healing and I believe God has blessed us but I am ready for Hayden to be rid of this tumor and just be free to be a little boy! Please continue to lift us up.
We don't have any plans for this upcoming week so I will keep you posted as soon as I know.

Thanks to all our friends and family for everything, we love ya!! Also the precious people we don't even know that are following this blog, thanks for the sweet comments you've made..


God Bless,
Christy

Hello everyone,
Just a quick note...Christy, Dave and Hayden met with Dr. Liebsch and oncologist Dr today and they both agreed that Hayden looks good. His weight, gait, weakness in R arm and hand was not a concern for them, they said he is just a tall, lanky, boy. The oncologist Dr. will be his physician if he needs one while he is in Boston because Dr. Liebsch is proton beam Dr. They are working on getting the MRI set up and will call Christy when it is scheduled which they hope will be on Monday but not sure at this point. Once we get the results of that (MRI) we will know more. Hayden will be getting speech, and physical therapy while he is in Boston which will be great, he needs help with both.

Hayden said it snowed a little in Boston this AM and can't wait to make a snow man.

Mason continues to have some separation issues but is doing well considering the circumstances. God is good.....

Please continue to pray for no more surgery and that tumor will be gone or unchanged from last MRI. We are praising and trusting God for more of His amazing love, mercy and grace as we await His answers to us. The unknowing is a killer sometimes we want answers like yesterday and He says to be still and know I am God. ( I am so trying not to be a control freak LOL) Those of you who know me should be laughing about now. Will close for now...Talk to ya later.

Thank you for walking thru this with us and your wonderful prayers.

Praising Him for His grace and loving me anyways,
Mimi

Hello Family and Friends,
Well it has been a long time on the road for part of the Johnson family but thanks be to God, He has delivered them in Boston to the Hampton Inn and for that we are grateful. They did run into sleet and rain and had a flat tire but other than that the trip was good. When they got to the hotel they were surprised to get into their room to find they actually were put into a suite of double rooms which means two bedrooms, one with king size bed and one with 2 queen beds and two bath rooms which will make getting ready a little easier. Then they received a basket of goodies (snacks) and fridge full of water and they had a Boston Red Socks hat and two baseball jerseys which was very, very nice and thoughtful for Hayden. God is blessing through this journey of uncertainty.

Now onto the day to come schedule: On Friday they have a meeting with Dr. Liebsch and a pediatric oncologist at 10:00 AM. At that time we should find out the rest of the schedule for upcoming days. So I guess prayer requests for today are thanksgiving for safe delivery from their travel to visit my family (Hayden's great grandparents and cousins and aunts and uncles he has not seen in over a year in Virginia) and to the hotel in Boston. Please pray also for calmness and peace for Hayden and Mom and Dad. Direction for Drs. and good report from MRI with no more surgery, that they will be able to get rid of the rest of this tumor with radiation with no set backs.

We continue to see God's hand in all this with how He has worked out all the details in His time. We just need to hang onto His promise that He will continue to complete the work He has started with us and Hayden and some days that is easier said than done.

A footnote about Mason he is having some anxiety moments at bedtime for Momma, Daddy and brother so please pray he will adjust to being w/o his Mommie and Daddy and his favorite brother Hayden as he says and being at Mimi and Papa's house for a while. Other wise he is doing well still a wild, wide open 2 1/2 year old that has a mind of his own sometimes and we have a battle of the wills on some issues. I had forgotten how funny a preschooler can be, he says some of the funniest things. Ok I must close for now, I will try to update every day again with updates as I get them so please keep us in your prayers. Thanks for all the all your words of encouragement and prayers. They continue to be a blessing to us and get us through some tough days.

Still praising Him,
Mimi

Getting Ready for Boston

Hey everyone, I wanted to give a quick update on our plans. we got the call yesterday from Boston. They want us there on Feb. 17. we will meet with Dr. Liebsch on Wed and Thurs. to do MRI and make other plans for treatment.
Please pray for several things: 1- that we will not have to be told Hayden needs more surgery and we can proceed with the radiation therapy.
2-We will have safe travels since we have decided to drive to Boston.
3- That our little Mason that we are leaving behind with Mimi and Papa will do okay and we will do okay. I'm missing him already just thinking about it.
4- That we will find a place to stay that we can afford. Everything that I've looked at has been very expensive!

I think this is all for now, we will update blog so you can keep up with us as much as possible.

Keep praying please, there have been several people that have said that they think one day when they look for this tumor it will be gone . The Doctors we have been working with are all gifts from God but there is only One Great Physician!!