Tuesday, January 8, 2013

A Look Back–One year since Lincoln was Diagnosed.

It's been one year since I got the phone call from Lincoln's pediatrician that changed our lives.  January 16th we took him in for his 2.5 year check up.  Everything seemed fine with Lincoln, but his perceptive daddy had noticed Lincoln's lymph nodes had seemed a bit swollen off and on over the past several months.  Dr. Shaver thought they felt normal, but did think Lincoln looked a little pale.  They decided to have his blood tested.  They thought maybe he was anemic. 

The next morning, January 17th 2012, around 8 am Dr. Shaver called me after seeing the results from the blood test and told me to take Lincoln to the emergency room immediately.  He didn't tell me Lincoln had Leukemia, although I'm sure he probably suspected that could be the reason his hemoglobin was at an astoundingly low 5gm/dl.  Confused and taken off guard I asked if it could wait until after I taught a class at the gym I was on my way out the door to teach.  After all, Lincoln seemed fine.  He was happily running around with Sawyer.  Dr. Shaver told me that I needed to cancel the class and go now.  It was surreal.  My heart started racing as I called all my friends with in close proximity trying to find someone to watch Sawyer for who knew how long.  The first few friends didn't answer.  By the time my friend Sarah answered I was panicky and emotional.  I dropped Sawyer at her house, drove to the ER and a couple hours later a doctor told us Lincoln had Leukemia.

The months to follow would be some of the hardest of my life as we watched sweet Lincoln endure so much.  He was blasted with high amounts of chemotherapy that made him sad and sick.  We stayed with him in the hospital for a few weeks and we waited to see how severe his case was.  If they could rid him of signs of Leukemia in the first 30 days he would be considered a fast reactor and his chances of beating the illness with out relapsing would increase.  At the end of the the 30 days we received the good news that he was in remission and there were no detectable signs of Leukemia in his blood.  We rejoiced.  But the end was far from over.  If fact, it was still the beginning of what has been an exhausting and difficult, but in many ways amazing year.

The next 7 months were intense.  He went through 4 phases of chemotherapy treatment.  Some were better than others.  All were different.  He had several extended hospital stays, some scheduled to monitor his chemo, some unexpected due to him getting fevers.

Three months ago he entered maintenance phase.   He'll be in this phase until June 2015.  It consists of daily chemo pills, monthly spinal taps and chemo through the port in his chest, and 5 days every month on steroid pills.  So far in maintenance Lincoln has been so unbelievable cooperative and agreeable about taking all his pills and going to his appointments.  I am so proud of him and so grateful.  He hasn't always been that way, and it makes a world of difference that he is now.

The people in my life have been indescribably amazing over the past year.  It has been humbling.  I could not have asked for a better support group.  From my immediate family and close friends to acquaintances I hardly new, so many people have reached out and shown love and support and that is what has carried us.  Words can’t explain what it has meant to me.  Thank you.  You have taught me how I want to be when I see others going through a trial.

I wish I could say life is so much easier now and it's all in the past, but I'm still waiting for that.  It is easier in a lot of ways, but life is not what I thought it would be by now.  For so long I just kept holding out for maintenance phase thinking we could get back to a normal life at that point.  Now that it's here things are still not normal.  Lincoln's immune system is still suppressed due to the chemo, and it is flu season.  Everyone is sick.  It's crucial to keep Lincoln from getting additional sickness that put him in the hospital and delay his treatments.  So, we are still isolating ourselves.  We stay home most of the time and when we go out we have to clean everything and be so careful about what we touch and who we are around. 

Now I tell myself I just have to hold out until flu season is over.  Just a few more months and maybe then we can have play dates, and the boys can go to primary at church and story time at the library, and take trips to visit their cousins, and the days won't be so long and lonely and boring in our house.  I yearn for those days.  I pray that they come before June 2015 when this is all over.  I don't think I can live this way for 2.5 more years.  I am a social creature who likes to get out and do things so being quarantined at home is a big challenge for me.  However, when I start to feel sorry for myself in the middle of another boring day at the house as I try and come up with new ways to entertain my munchkins, I remind myself to be grateful that Lincoln’s doing as well as he is and that he hasn't relapsed. 

And so as I reflect on 2012 I do so with a full heart.  I have learned just how much I love my boys.  I have learned what really matters in life.  I have become more compassionate and less judgmental.  I’m reminded how truly good, kind and wonderful people can be, and I’ve been convinced that the vast majority of people in this big, wide world are precisely that. 

I would never wish to relive you 2012 but I am glad I was able to learn and grow because of you. 2013, I welcome you with hopes of health and happiness for everyone in my life. 

Last Year, Christmas 2011, only a couple weeks before Lincoln was diagnosed. 

P1020829_thumb[2]P1020716_thumb[1] (328x482)

P1020806_thumbAnd here we are now.  Christmas 2012.P1060421 (1280x1068)P1060344 (1280x961)Look at those faces.  I am Blessed.


Lisa LaBanc said...

Oh man, I can't believe it has been a year. I'm sure it has felt very very long for you. Look at those faces, you are very blessed :)

Steph said...

Seems surreal! I remember that phone call I got from u a year ago. I was laying in bed at my in laws house. I couldn't sleep after as I bawled and just couldn't seem to wrap my head around it. U have been an unbelievable example of faith ad hope and stregth thru it all! And I hope this yr is much better too! And I love his bald head! He is so cute!

DC Diva said...

What a year Cheryl. I remember everything about January 17th. We still have a long road ahead, but oh, I am so glad 2012 is behind us.

I admire your strength and perspective and ability to see growth and opportunity through this awful trial. It has been unbelievably hard and you have handled every step with such grace.

I can't believe the difference in the Christmas pictures. I think you all look so much better in the 2012 shot! May be the photog. Oh wait... pretty sure I took both. :)

Love you all. So much. So proud of my super heroes.

Michael said...

A long year for everybody, but longest for you. We are proud of Lincoln, as you described, but so proud of you and your grace and strength.


Heather said...

How blessed and lucky are you all that Lincoln was diagnosed so quickly and responded to treatments so well. I'm so grateful that as difficult as this has been for you, Lincoln has been a champ, your doctors have been great, and there's a long-term, healthy and happy 2015 to look forward to.

Bradford was looking at this post with me and recognized Lincoln and Sawyer from your Christmas card. He calls Lincoln and Sawyer his Christmas card friends. He knows they are nice boys his age, and he's kind of obsessed with them. He keeps asking if he can play with them. I hope some day they can play together!


P.S. I hope Ryan is enjoying his first year as a real derm doc!

Ashley said...


I've just spent the last hour reading through dozens of posts over the last year, sobbing, smiling, and laughing. Thank you so much for sharing your experiences. I'm heartbroken that you and your darling family have had to go through this, but I'm so amazed by your tenacity and faith. You really are amazing. Praying all continues to improve and so excited to see pictures of your baby girl.

This is Ali's old roommate Ashley btw. haha!

Sara B. Larson said...

What a year; I can still remember my shock and sadness reading your first post about Lincoln being diagnosed. I'm so glad that he's doing so well, though I'm sorry you still have to be so careful. You are stronger than you know and inspire so many! I hope 2013 is a wonderful year for you all!

mccall said...

Holy cow, Cheryl. What a year! I look up to you so much and I feel honored to know you. You are such an amazing and strong woman and I love you dearly!

mccall said...

PS I hate that your header doesn't say Livin it up in the Burgh anymore.

Christine Bowers said...

Aloha from the island of Maui. I was very touched by your post. I went to high school with your dad & mom. We were acquaintances, & I did hike with your dad at our big HH reunion last summer. I discovered we both have grandson's named Lincoln. Such a wonderful name. And we have something else in common, one of my two grandsons is a red head! It looks like you are blessed with one, too. Your mom was such a fun personality in high school. I remember your dad playing basketball. Your little boy is so brave, and so is your family. My prayers go out to you all, Chris B.

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