Tuesday, January 31, 2012

Induction Phase Day 12

That's what we're in right now..."induction phase". It lasts 29 days. Next is "consolidation phase" for 57 days. I'm not allowing myself to think past then. That is enough to think about. The best advice I've received so far is to take it "one day at a time". I've adopted the mentality to take it "one pill at a time" because there are more than one dose of meds a day.

Sleep

Oh blessid sleep...will I ever get you back? For eleven nights Ryan or I slept next to Lincoln in the hospital. The first night back he went to bed in crib like the old days and I was so revealed. Then, two hours later he was up screaming for us and we ended up on the couch. He hasn't slept in his crib since then. So, he falls asleep on the couch...with one of us next to him or at least in the room. We either move him to his crib only to have him wake up screaming a few hours later or sleep with him on the couch. We try and take turns, but the past two nights he's woken up demanding me and is only consoled when I arrive. I am grateful that I operate as well as I do with little, low quality sleep.

They warned me about the steroids.
In some ways I'm glad I have a drug to blame his behavior on...because it is bad. He is demanding and cranky and cries hysterically when things aren't exactly how he wants them. And he's starving all the time. He's gained 3 pounds in 2 weeks. Only weighing 27 pounds that's a lot. For example, yesterday morning I had snuck back to my bed around 3 am and at 5:15 he woke up screaming "want a grilled cheese sandwich!" I got up and started making it. As soon as I did he was screaming "mommy hold you! (meaning hold me)" So I sat down and held him. Then it was back to the grilled cheese. So I ended up holding him on one hip making a grilled cheese with the other hand. Five bites into it he wanted scrambled eggs. At 5:15 in the morning. So I blame the drugs and the situation and the cancer. I pray I'm not creating a total spoiled brat by catering to his every whim. But how can I not?

My parents

I still can't believe they just dropped their lives and rushed across the country at a moments notice. Actually I can. They are amazing like that. What an example of love and sacrifice. My mom quit her job that she loves. Just having them here everything seems so much more bearable. They are constantly telling us how proud they are of Ryan and I and how awesome we are doing. They are my cheerleaders. When Ryan and I grow up I hope we are parents just like them.

Ryan
He went back to work yesterday. So the world continues to turn I guess. Life goes on. Lincoln's immune system is wiped out right now so obviously hand washing and cleanliness is crucial. Ryan has taken this very seriously. Every night he deep cleans the house. Last night he did it wearing hot pink cleaning gloves. I love him.

Prayers
When I think about all the people praying for us and Lincoln I am overcome with gratitude. His name is one dozens of temple prayer roles, including the prayer role that the first presidency of our church prays over. A friend who comes to classes I teach at the gym is a physician who travels the world on medical service missions helping people in 3rd world countries. I received an email from him that he'd asked "His holiness, the little boy, The Chosen One" of Bhutan to pray for Lincoln. I myself have never prayed so often and so fervently. Lots of prayers all around the world are being offered up to the Lord. I know he hears them.

Other Notes
Today home care is coming to get a blood draw by doing a finger prick. Lincoln is going to hate it.

I should never make brownies again. He wanted the whole pan and screamed relentlessly for an hour, literally, when I wouldn't let him have them all.

Sawyer sleeps through everything - it's remarkable and another tender mercy.

There is a fine balance between too much mirilax and not enough to keep Lincoln's bowels regular on all these meds and it is a constant issue.

It's ironic that he wants me all the time when I'm the one who causes him the most frustration shoving meds down him. I am his greatest source of comfort and distress.

I feel like a big complainer all the time :( Sometimes it's not all so bad. Things could be a lot worse. Everything is relative and relatively I know I still have things really, really good. It just seems when I sit down to blog all my frustrations spill out.

10 comments:

DC Diva said...

Cheryl, you are sounding anything but like a complainer. You are going through so much... SO MUCH. The huge things -- Lincoln is very sick and the little things -- grilled cheese and tantrums at crazy hours, insurance, cleaning, cleaning, cleaning, still being a mom to Sawyer... actually, all those things are HUGE too. I'm pretty confident no one here is judging you. You are doing your best and your best is pretty darn amazing. Follow your heart with Lincoln. It will guide you to care for him the best way you should.

I'm so glad you're blogging. You will be happy you have this record. I'm happy to read about all the other little (huge) things and feel more updated as our phone calls are so disjointed. I'm so anxious to come see you... I miss you.

Harley King said...

Oh blessed sleep. I don't know how you get by on so little.

I love your bullet-point notes format.

I say give him the pan of brownies.

Steph said...

Totally wish I was nearby. i would come and cook his cravings at 5 am and stuff since I was up then too here and what was I doing - wanting rice krispie treats and licorice - seriously had a craving adn mouthwatering and was all I could do to not get up and walk into the kitchen and devour the whole pan! But seriously, I would love to do the things you need to so you could just sit and hold him, and in a way get a little break from trying to do both at the same time. I love you girl!!!

Bethany Sines Photography said...

please please please never ever worry that you're complaining too much, or even at all!! Those of us who read this and love you and pray for you don't judge you at all about anything. If i were going through this situation I'd probably be cursing God vocally on my blog. haha. but really, you're so amazing and don't sound negative at all. I love how real you are about it. It makes me feel better cause I consider myself a complainer, too.

Kimberly Porter said...

Cheryl, you are always in my thoughts and prayers. I wish I was there to give you a big hug. So here is a virtual one ((hug)). My advice to you is to let people help you. Rest often and continue to love love love. It is fine to get frustrated. Don't hold in your emotions. Being strong doesn't always mean to be confident and happy. It means to endure even if you are holding onto your last fiber of thread. And you are enduring, thus you are strong and brave. Keep it up, lady. This won't last forever. Lincoln will be all healed up before you know it. Love you.

Sara and Justin said...

Cheryl, you are Ryan are doing such an amazing job. You are such amazing and faithful parents, and I admire you so much.

This reminds me of an article in January's Ensign by Elder Christofferson. He talks about how his mother had to go through painful radiation treatments. She was talking to her mother (Elder Christofferson's grandmother) and she said, "Oh, Mother, I can't standing having 16 more of those treatments." Her mother said, "Can you go today?" to which her daughter replied, "Yes." She said, "Well, honey, that's all you have to do today."

We are praying for Lincoln and for your whole family often. You are doing an amazing job.

-Sara Skidmore

Jessica and Bryce said...

I think you are incredible.

Heather Ross said...

I'm so grateful that Sawyer is the easy-going child you need him to be, Ryan is such an awesome husband and father, your parents are there for you all, and that Lincoln loves you even when you won't let him eat every last brownie.

I'm also grateful that you blog honestly about what's good and bad in your day to day life. It helps me (and I'm sure everyone else) know where to focus our prayers and positive thoughts.

How amazing is it to know that people all over the world from all different faiths are keeping you all in their thoughts and prayers? That's got to make you smile when you fall asleep on the couch with Lincoln in your arms.

XO,
Heather

Karly said...

Cheryl, Thank you so much for posting on your blog about this. It is so nice to be able to read, so I feel a little more connected, since I know a phone call is probably pretty hard to take right now. I hope you got mine and Akasha's package. It is probably worthless stuff, but I wanted you to know I am thinking and praying for you fervently. You took such good care of me in Pittsburgh, I wish there was something to do. Until then, I will continue praying. Love you so much Cheryl.

Diana said...

Your family is in our prayers Ryan and Cheryl. So glad that your parents can be there to help you out. Thanks for the updates. Diana Veenendaal