Saturday, January 28, 2012

We're home.

We came home yesterday afternoon. I was so happy for Lincoln. The past 11 days have been filled with one traumatizing experience after another and every day he asked to go home. It feels good to be back, but it's also scary being away from the medical staff. I'm so glad my parents are still here. It's making the transition much easier with all their help and support.

How he's Feeling.
At times Lincoln seems like he feels okay, but most of the past 24 hours he's been pretty lethargic and very clingy to me. I want to hold and carry him if that's what makes him happy but it's also so exhausting. Sometimes he winces and says "feel sick". It's so frustrating not knowing exactly what symptoms he's experiencing.

His Prognosis So Far.

I felt like we had a huge set back yesterday. Medically and emotionally...but mostly emotionally. He had a bone marrow biopsy yesterday morning before we left the hospital. They were hoping to find less than 5% cancerous white blood cells in his bone marrow. If that was the case he wouldn't have to have another biopsy and spinal tap for two weeks. It would have meant his body was responding quickly to the chemotherapy. The quicker your body responds in the first month the more likely the patient is to achieve complete remission. It would have been such wonderful news. Instead the doctor called and told us he still has 56% cancerous white blood cells. The new hit me hard and I had panicked and had meltdown. The doctor said it doesn't change any plans for treatment yet, it just means we have to do another spinal tap and bone biopsy next Friday and then again in two weeks and if it isn't under 5% at that point treatment will become much more aggressive...and his chances of complete remission go down. So now we wait. It's going to be so hard to relax and not think about it for the next two weeks.

The nasty Meds - steroids in specific

This morning we got his steroid medication in pill form and instead of crushing it we split it into three pieces. Then we put it in a lump of mashed potatoes. He swallowed the whole thing in one bite. I don't think he could taste it at all. We did the same thing tonight. I am so grateful it worked and we had one less battle. So very grateful. The other meds he still has to take in liquid form and we still battle and force them down him. But they are less crucial so when he spits them out it's not such a big deal.

Another note on the steroids.
The main side effects of the steroids are increased appetite, irritability and mood swings. We are definitely seeing these in Lincoln. Last night he woke up in the middle of the night and ate two huge bowls of cereal. He's probably eating three times what he used to. And he's cranky.


My little Sawyer has been such a trooper through all this. He's adjusted so well to being watched by my parents. I really miss him and am glad to be home and seeing him more often. He just makes me smile all the time. I should do a whole separate post just on him and how fun he is right now.

Teaching at the Gym
Currently I teach six classes a week at four different gyms. I haven't given any of them up yet because I just don't know what my life is going to be like and don't want to make any rash decisions. I taught a dance class last Tuesday and a yoga class this morning. It felt weird both times. It was nice to break away, but I felt guilty being gone. I'm pretty sure I'll have to give some classes up. And that's okay. It's sad though. Lincoln loved going to the gym child care.

Gifts, cards and Notes.

Thank you all so much. I can't say it enough. I mentioned this before, but texts, emails, cards and gifts seem to arrive at just the right times. I am overcome by your love. Yesterday during my melt down after I talked to the doctor I received a bracelet in the mail from a dear friend in Virgina. Inscribed on it are the words "Brave Girl". It made me cry really hard because I was so touched by the gift but also because I realized that was exactly the opposite of how I feel. I'm terrified. But it helps to think she already thinks of me as brave. So from now on "Brave girl" is who I will try to be.


millisue said...

Cheryl, Hey this is so out of the blue, but its Milli (Jones) from high school and BYU. I saw your update on facebook and so I decided to check out your blog for more details. I just caught up on everything and just want you to know how sorry I am that your little boy is sick. It makes my heart hurt for you. I had a horrible day with my 3 year old today and I just wanted to run away and never come back. After reading about your situation, it really puts things into perspective. It makes me want to be a better mom to my kids. Anyway, you really are a brave girl and you guys will get through this. My prayers and thoughts are with you and your family. They are beautiful.

Kyle and Lindsay M. said...

Cheryl, I just wanted to let you know that we love you all and are thinking about you all the time. We pray for Lincoln morning, night and every meal. We will be praying especially hard that his cancerous white blood cells will be below 5% next Friday. Lincoln's hair is so beautiful and I am sure it will grow back exactly the same :) You are absolutely positively amazing. I look up to you a lot.

Ming said...

Oh Cheryl I don't even know what to say. Looking at all of those pictures of your precious little boy has left me in tears. My heart aches for you guys. The funny thing about bravery is you don't feel brave when you're going through it. I can only imagine how hard this must be for you. But when all is said and done (and it will be once he's in remission) you will look back and realize how truly brave you really are. Because you ARE. You're amazing! You and your family are in our thoughts and prayers.

Heather Ross said...

You don't have to be free from worry, fear, sadness, or confusion to be brave. Being brave is about so much more.

So glad you are home. I'll pray that being home is just the ticket Lincoln needs to get the magic numbers you're all looking for.

Poor kid having so many spinal taps! I had to have a spinal tap when I was 19 because I had a mysterious illness, and my doctors thought I might have meningitis. Luckily I didn't have meningitis, but I do remember the spinal tap was not exactly pleasant. I can't imagine having them as often as Lincoln.

I hope you guys all get positive news about his response to treatment soon.


P.S. So happy that Sawyer is being the fun and happy little boy you all need him to be. He just might be the rock of the family these days!

Tracy Peterson said...

You are very brave! Love you!

Ali Snow said...

I'm so glad you posted pictures. I've been wanting to see pictures for a long time...although they make my heart break. Lincoln is such a good little boy and you and Ryan are both being so strong. I love you.

DC Diva said...

You are brave Cheryl. Braver than you know. Mom tells me every time I talk to her just how strong you and Ryan are.

I hate to think of Lincoln telling you he feels sick. I hate that Friday's results were not what we wanted. I hate these side effects. I hate it all.

I'm glad you're feeling love from friends & family. You are not alone.