Sunday, August 26, 2012

Phase Four–Delayed Intensification. Very Hard.

Never in my life have I been pushed and stretched so far to my physical and emotional limits as a mother and care giver as I have been over the past 5 days.  Lincoln started phase four of his treatment and it has not been pretty.  He wants me by his side holding him and with him 24 hours a day, and that’s basically how it’s been.  It seems wrong to complain about that and of course I want to be there for him and with him, but in reality, moms need breaks and when we don’t get them it is hard.  I’ve been amazed at what I’ve been able to do as a parent over the past 7 months– how much I’m able to go through and sacrifice and how willing I am to do it.  He doesn’t feel well and my heart breaks for him and wishes I could take away his pain.

Medications.  He’s back on steroids which he hasn’t been on since Induction Phase over six months ago.  That along with several other drugs.  The steroids main side effect are increased appetite, mood altering and irritability.  His appetite is through the roof.  The boy at an entire chicken broccoli casserole in 3 days all by himself.  It kind of makes nauseous to think about.  Don’t worry, I feed him almost every bite while holding him on my lap.  He doesn’t want to do anything himself.

Words to describe his behavior throughout much of every day.  I hesitate to write this because he is my sweet boy and these words shouldn’t and don’t describe his true self but I also want and honest account of what we went through to look back on.

demanding, inconsolable, screaming, out of control, needy, irrational,  hysterical.

These may sound like typical 3 year old tantrum words, but the difference is the frequency and duration.  Imagine the worst tantrum your child has thrown and then replay it multiple times a day for sometimes hours each time for days in a row. 

Examples of his lack of rational during his episodes.  He’ll scream and demand that he wants me to dump his milk all over the kitchen floor.  When I finally do he insists that I not clean it up.  He wants no diaper on and for me to throw it out the window.  He wants me to hold him and not hold him at the same time.  He wants to twist his sippy cup lid on the wrong direction so that it will spill all over himself. 

Part of me feels like I should just put him in time out and regardless of the drugs it is not acceptable behavior, but I’m honestly afraid he will hurt himself if we put himself in a room by himself.  He is so uncoordinated, especially when he’s so upset that he has no control of his body and I’m scared he will fall and smack his head on something in his hysteria.  The best thing I’ve found is to sit quietly in the room with him, protecting him from himself, until he eventually decides to calm down and usually ends up in my arms asleep.

Refusal to take his Pills.  When he was on steroids before we were able to hide his pills in mashed potatoes and that worked.  For the first few days it worked this time around too, until he chewed up the potatoes the other day, tasted the gross pill and spit them out.  Since then we’ve offered ice cream, chocolate syrup, peanut butter, nothing works.  We’ve tried begging, threatening, bribing, reverse psychology, nothing works. We’ve tried it in drinks and just giving it to him whole – he fights everything.  Last night was the worst.  For probably three hours we tried to get him to take his pill.  It wasn’t until 9:30 at night, at Target, in the toy isle, holding a new letter toy and then taking it away over and over and pretending to leave the store multiple times did he finally swallow his pill…$22.00 and one junky letter toy later.  This morning it only took about an hour.  We took the toy away and talked about how fun it was and tempted him with it and we were able to get him to take the pill that way.

Tender Mercy – Answers to Prayer  Thursday morning was not going well.  Ryan was at work and Lincoln had been basically hysterical from 6am-10am.  I was exhausted from not sleeping much the night before, overwhelmed and depressed, but mostly I was feeling so bad for Sawyer.  I know it’s weird to call a one year old mature, but so often that’s how I feel about him.  I am constantly neglecting him to help and be with Lincoln and most of the time he’s so good about it.  He self plays.  He is happy.  He is independent.  I love him so much.  Every day when I get Sawyer out of his crib Lincoln screams “No Sawyer!  Put him back in his crib” all through breakfast.  Thus was the case Thursday morning and it was just all too much. 

In a moment of desperation and a feeling of the need to vent I texted my sisters something pretty dramatic along the lines of  “Help, Kill me, This is hell”.  Obviously I don’t really feel that way and I’m pretty sure they knew I was being dramatic, but it had been a miserable morning and it seemed like it would help to tell my sisters. 

A few minutes later Wendy called.  She asked how I was and told me how sorry she was.  Right then someone knocked on my door.  I told her I didn’t want to answer it because I had no make-up on, no bra on, was basically a complete mess.  But Wendy told me to answer it and that she’d just been praying for someone to come help me because she couldn’t.  I went to the door and it was my neighbor who I barely know, but who had watched Sawyer for me the day before while I was at the hospital with Lincoln.  She said she’d been thinking about me and just wanted to come see how I was doing.   She wondered if she could take Sawyer for a ride in the wagon around the neighborhood.  Tears filled my eyes and I was overcome.  I told her I had just been on the phone with my sister who had been praying not five minutes before that an angel would come help me.  Sawyer excitedly climbed into the wagon and went for a ride, and I was able to calm Lincoln down.  Sawyer was able to have some fun and get some attention – the very things I had been feeling so guilty and bad about all morning.

Sometimes the lord answers our prayers over time and sometimes he answers them immediately.  This was an immediate answer to prayer that was so powerful and special to me.   I am so grateful for my sister and her love, concern and prayers for me.  I’m grateful for the kindness and love of my neighbor who I hardly know.  Mostly I am grateful for a Heavenly Father who gives us strength, shows his love and awareness, and answers our prayers even in our darkest hours.


Heather said...

I'm so inspired by this post, Cheryl.

I think, years from now, you'll be so happy that you wrote all of this. I imagine an 18 year old Lincoln reading this and laughing about his fits over things that don't make sense (like spilling milk). I think about a 17 year old Sawyer pleading to borrow the car, using his angel behavior as an almost 2 year old as a way to convince you that he's earned the keys. I imagine any future kids you might have being inspired by simple acts of kindness and the power of prayers and positive thinking. I think of you and Ryan, relaxed and happy.

Hang in there. You're never alone.

Amanda said...

oh cheryl this post breaks my heart for you. you are amazing and i know poor lincoln is such a happy sweet kid when he isn't on those meds. that would be so hard to go through. you are inspiring to all of you have handled these last 7 months is so admirable, i don't know how you do it! i'm so happy you have such a sweet neighbor. i hope things get better soon. love ya.

Mom said...

Oh Cheryl, Dr Grossi warned us this phase would be ugly and it breaks my heart that it has been beyond ugly. You continue to be my hero. You are Lincoln's hero and Sawyer's and Ryan's hero. I wish I could express to everyone who follows this blog how hard this is and how well you and Ryan are dealing with everything. I consider it an honor to have been able to spend so much time with you and Ryan and Lincoln and Sawyer these last few months. The dignity, faith, gratitude and grace that both you and Ryan demonstrate as you travel this unwanted journey is remarkable to witness first hand. I am glad you gave your very raw and real feelings a voice in this blog. You are doing a WONDERFUL job. You are an AMAZING MOTHER filled with love, compassion and patience. Lincoln is so lucky to have you as his mother to help him heal.

I echo the words of Heather.......
Hand in there. You're never alone.

Mike said...

Cheryl ... I love your honesty. I sound like a broken record but I really admire you and don't know how you do it, and you are my hero. And I hate those sand mites (bugs)

Love Dad

PS I am so glad you are accepting help from neighbors. Don't ever be too proud to do that. And dozens of people fasted for Lincoln and you today.

Ali Snow said...

I'm so sorry Cheryl. I, more than ever, wish we were neighbors so I could help out more. You are so strong. I'm amazed at how you've handled yourself throughout this whole situation. It's so hard to keep your patience when Lincoln is being so ridiculous with his demands and there is no way to reason with or comfort him. You do an amazing job. I love you!

Jess said...

Cheryl, I am so sorry that you are going through this. You are the most patient mom I have ever met, and seriously I don't know how you do it! I will keep your whole family in my prayers. Love you!

Akasha Balkman said...

oh Cheryl, this post honestly made me cry. my heart breaks for you, and I wish so badly I could be there to help. I can't even imagine having the strength and patience that you've had. you have inspired so many mothers through your example. That is so amazing that your neighbor came by right when you needed it most.. the Lord truly is watching out for your family. I hope things will get better soon. I love you and will continue to pray for you. If you ever need to talk, please give me a call.

Harley King said...

Great story about prayer. You and Ry-guy are great examples of patience and perseverance. I wish we lived closer so we could take Sawyer.

Jessica and Bryce said...

Love you Cheryl. Hang in there. Wish I could be near to help you. I will definitely send my prayers your way. You guys will get through this. I know the lord is mindful of you. Call me anytime you want to talk.

Atrena Holm said...

I love how real you are and that you share your struggles. You are my hero. Remember to ask for help when you need it. Others need the blessings that come from serving you. Lincoln is so lucky to have you as a Mom. I'm always praying for you all.

Anonymous said...

You have never met me, but I read this post and it brought back some many memories. My niece is currently going thru cancer. She is now in Maintence and just want you to know it does get better. I spend a lot of time with my sister and I remember how hard it was on my sister during the D.I. Phase. She would often say it is just as hard if not harder than induction. Just know that you can do this. She has a sign that another cancer mom gave her it say "you never know how strong you are, until being strong is the only choice you have" best of luck with everything. Know that many people are praying for your son, even some you have never met. You can do hard things!

Anonymous said...

You have never met me, but I stumbled upon your blog one day and now I visit often. You inspire me in so many ways. You inspire me to be a better mom, to appreciate life and all the blessings that my family has. My daughter is almost 3. I can't imagine how difficult this is on your family, yet, you are strong, honest and inspiring. You clearly have people all over the world praying for your family. I believe that you are never given more than you can handle. Be strong, continue just as you are, you are doing amazing, even when it doesn't feel like it.