Monday, January 23, 2012

Thougths from Day Seven at the Hospital

We are slowly being to wrap our brains around how all of this will be changing our lives and it's a bit to take in. We just met with one of the nurses for about an hour who went over the first section of a big binder about Lincoln's future care. One day at a time. I just keep telling myself that.

Feeling the weight of all of it.

When I was first told that for Lincoln it would be a total of about a 3 year process before it was completely over that was a lot. Then I accepted it and told myself that would be it and we would get through it and we would be done forever. Then yesterday afternoon we were visiting with Lauren's grandma. Lauren is a sweet little girl who's been here for a while. I assumed it was her first time around but learned from her grandma that Lauren was initially diagnosed as a baby at 17 months. She'd been in remission for 5 years....but now, at nine years old they are back. She had a relapse. Her hair is gone again. That hit me like a ton of bricks. Maybe this won't be gone forever after three years. Maybe this will haunt us forever. When I think about that it's hard to breath.

Lincoln's First Steps
The first few days Lincoln was really sore and had some legitimate pain from his bone marrow biopsy and spinal tap. It hurt to walk and stand so we carried and held him for a couple days. On the 5th night however I knew he was feeling better and could walk. He was crawling all around and kicking his legs when we'd change his diaper but every time we tried to stand him up on his feet he tucked his knees to his chest and refused. He'd completely reverted physiologically and was convinced it hurt to walk. Eventually we got him to try and I don't think I'll ever forget his little face. It was like he was walking for the first time. He started out slowly shuffling along but with in minutes he picked up speed and his shaky little legs remembered what to do and his face beamed with pride and excitement. He spent the next half hour walking up and down the hallway in his diaper and T-shirt, IV pole rolling along beside him - happy as could be.

Gifts at exactly the right time

Everyone has been so incredible and we have felt so loved and supported this week. Several people have sent or dropped off little gifts and they seem to arrive at exactly the right time. Lincoln hates it when I leave the hospital but sometimes I have to come home and shower and see Sawyer and have a tiny, little break. Today he had a rough morning. They introduced a new drug as a part of the chemo therapy. He couldn't leave his room for a couple hours and they had to take his vital signs every 15 minutes so he was particularly grumpy and clingy. I needed to leave but was feeling extra nervous about it. Before I left the primary president arrived with some gifts. Lincoln got engaged in making the little puppets she dropped off and I was able to slip away without him even noticing. Those little tender mercies mean so much to me.

Family and Friend Fast
Yesterday so many friends and family and my entire ward fasted for Lincoln and our family. Through out the day I stopped multiple times to think about all the people who were thinking of us, praying for us, and fasting for us and felt overwhelmingly loved. Thank you.


Ali Snow said...

I'm so glad you're taking the time to do these posts Cheryl. You'll be glad you have these kinds of things written down. I'm so glad for the tender mercies you're noticing. I'm so sorry for the thought that this will haunt you forever. I hate that. I love that Lincoln loved walking up and down the halls again. It doesn't take much for his little spirit to be lifted. Kids are so great and such an example that way. I love you. I love Lincoln.

Lisa Weiler said...

I second what Ali just said- I am so glad you are documenting. It must be pretty therapeutic for you and you will appreciate having this journal later. And selfishly, its nice because I feel like I haven't even talked to you much so its good updates! It is true you have had so much support, prayers and fasts- people love you so much!

Cynthia said...

I was so sad to hear about Lincoln's cancer. I don't know if you remember me but I am in the Wanderwood Ward and friends with your great parents. As you may not know, I am starting chemo tomorrow because I had breast cancer. Although I am nervous, I realized that if Lincoln can go through chemo at 2, I can endure it at 62. He sounds like a brave little guy! I have found that when I get discouraged, I have to remember that I am going through this experience for a reason, even though I do not know what it is right now. I have to trust in the Lord and lean not to my own understanding. I know that He will inspire you and your husband. (Proverbs 3:5-6) I am also grateful that you have a blog - I am sure it helps you as well as many other people (me included). I am praying for Lincoln and your family. Hang in there - there is a light at the end of the tunnel.

Hay said...

Thinking about you and sending lots of prayers your way! Love you guys! Lincoln is such a brave little guy!

Doug and Leslie said...

Cheryl - I've been meaning to email you since I first heard about Lincoln. It just makes me hurt (being a mom now myself) to think of that little guy in pain and how much that must hurt you. I cried when Molly received her first shots and can only imagine what you are going through! Thank you for keeping this updated it is truly amazing. Good luck with everything going on and remember that you guys are always in your family's thoughts and prayers.

Nicki Capoziello said...

Hi Cheryl,
You really will be grateful that you are writing all of your thoughts and happenings down. It will help you recognize the blessings and see what a great job you have done with the struggles. Does the hospital have a Child Life Program... don't know if you remember I worked as one for 18 years in 3 hospitals. Check it out, they can be very helpful especially considering Lincolns age. Praying for all of you every day.
Love Nicki