Sunday, May 31, 2015

More to the story

In the life sketch I wrote for Alisa's funeral, I mentioned that she was a huge help to our family when Steven first got diagnosed with cancer.  I may have also posted some of these stories, but as I was talking to some of my cousins at the funeral, it seemed they hadn't heard them, and so I thought I'd better write it out all together.

Steven was diagnosed with bone cancer on February 16,  2011.  He had been limping and one evening, I noticed his knee was swollen.  The next morning I made an appointment with the pediatrician and picked Steven up from school.  I never in a million years expected to hear he had cancer.  An xray revealed a bone tumor and the doctor broke the news to me gently.  I sat in the waiting room while the office set up appointments for us at the children's hospital.  I was stunned and at this point didn't realize it was cancer.  I did the only thing I could think of, I texted Alisa.  "Steven has a bone tumor.  We are going up to the hospital."  

Alisa had found a tumor of her own just a week or two before this.  At this point, only Josh, me and my brother, Jon, knew about it.  She was waiting for results to see how far it had spread and what stage the cancer was at so she wouldn't worry too many people until it was clear what she was up against.  

I know she started googling bone cancers immediately.  She then hopped in the car and drove to my house. I needed to drop my little girls off there with my mom before our appointment at the hospital.  Sometime between the texts to Alisa and getting home, it dawned on my that we were up against cancer.   Alisa and my mom were waiting for me when I got home.  

She coached me in a few things to ask about.  She thought that I should look nicer for my appointment (side note--if I have ever dressed nicely, it is thanks to her).  We started to look through my meager clothing selection and when she wasn't satisfied, she decided to just trade me shirts, literally giving me the shirt off her back.  She had brought a book for Steven (he wrote an essay about that, I'll post it later), and gave him her smart phone so he would have something to keep his mind off the stress of the hospital.  

She watched my kids so my parents could come up to the hospital.  She cleaned my house and had the cousins and siblings make cards for Steven.  She got him balloons for his bedroom to welcome him home after the long day.

I remember my stomach sinking as my parents told Dr. Jones that their daughter had cancer once, but that she was free and clear.  I knew they were only days away from a heartbreak similar to what I was experiencing.  

The next day Steven went in for a biopsy and port placement surgery.  While he was in surgery, Alisa talked to me and insisted we take a vacation before he started chemo.  "He needs to see the ocean."  She talked my dad into giving us his frequent flier miles and we booked flights to California.  She even let James come along to help cheer up Steven.

Steven's surgery was on a Thursday, and we left on Saturday morning.  So on Friday, Alisa felt like I needed to invest some time on my image.  She took me to get my hair done and then took me shopping.  She bought me the most expensive pair of jeans I've ever owned and more clothes besides.  She would buy more things when I was in California so that I would be well prepared for lots of hospital and doctors visits in the future.

I don't know where this fits in, but around this time, Alisa got all my siblings to go in on a group gift of an Ipad.  At the time, our family owned no personal electronic devices or smart phones or gaming systems.  She thought he'd need something to do while he went through chemo.  It was a huge blessing through all of his treatments.

The vacation turned out to be exactly what I needed.  Until we left, I hadn't been able to eat or sleep.  I did both well on the trip.  She knew the power of a vacation--it is one of many lessons Alisa taught me.  I will forever be grateful for those memories and for that peace.

While we were on vacation, she organized a massive overhaul of my house.  We had been living in a 1200 square foot rental home since 2008.  We had been planning to start home shopping in the spring, but cancer would put that on hold.  I hadn't taken the time to decorate the house since I was always hoping to leave.  But she decided I would be more comfortable there if it were decorated and if used some IKEA magic to make the small space stretch.  She also thought I'd get better care from the home health nurses if my house looked well cared for.  She had my siblings all come over and install shelves and hang pictures.  She focused on the living room and on Steven's bedroom.  My parents bought a recliner for Steven.  All of this was waiting for us when we got home from California.  I felt so loved.

I was also amazed at how much she had accomplished.  I knew that she was so worried about what her own future held.  She got her results the day that Steven started chemo.  Her cancer had progressed to stage III, but luckily there was no cancer beyond her leg.  She would start a grueling process of decision making and waiting as we things were just getting going for Steven.

She came to see us in the hospital and took some beautiful pictures.  She told me I should start a blog.  She gave me all kinds of convincing reasons:  giving out accurate information to concerned family and friends, sharing my feelings, keeping a record of things I'd learned, and to help others going through similar trials.  I followed her advice and I'm so glad I did.

One of Alisa's pictures of us in the hospital.  I'm wearing a shirt she gave me and a hairstyle she paid for.

Alisa visit's Steven in the hospital during his first round of chemo.

So far, I have just written about the first week of Steven's diagnosis.  I could almost write a book about all the things she did for us.  She was incredible.  She organized a family gift of regular housekeeping so I wouldn't have to clean my toilet for nine months.  She helped watch my other kids and organized fun play dates to keep Steven cheered up.  She took pictures. She would come to visit us and bring the perfect treat or book for Steven.  She threw Steven a party to celebrate the end of chemo.  I could write a whole other post about her help after I lost my baby and she canceled her trip to stay, and how about the amazing group gift of a beautiful piano she made happen for me and for Steven.  More than anything, she was always the perfect person for me to pour out my heart and worries to--she knew what I was going through.

Alisa was a huge part of me surviving Steven's cancer diagnosis and treatment.  So often people wonder at how the two of us could have cancer affect us at about the same time.   I don't know the reasons, but if cancer was in the stars for us, I'm really glad that we could go through it together.  I'm glad that she was there for me and had learned the ropes.  I hope that somehow I understood her more because I had a taste of what she was going through.

One of the regrets she often expressed to me was that she wasn't able to do more for me.  It seems a silly concern as I list the amazing service she did.  I think each act of service was more meaningful because she did it in the midst of her own troubles.  And maybe the best thing of all was her example of looking outside of yourself in the middle of your problems.

Another visit later in the year.  She visited him countless times.

This was taken on the last day of Steven's chemotherapy.  


  1. I'm in awe of Alisa. What an amazing person she is- I love that she continues to touch lives from beyond the veil! I love you Sonja!

  2. Sweet Sonja,
    This was beautifully written. You used your words perfectly to express your thoughts, feelings, and emotions. My mistake was attempting to read this out loud to my husband! Needless to say, there were many long pauses while we waited for my eyes to stop watering and my nose to stop running. What talented sisters! Is there any other relationship as tender as sisters?! I know the purpose of your post was to describe what an amazing sister Alisa was to you, and she truly was, but I think it should also be noted that you were an incredible sister to her! You battled together, you bonded, you beat so many odds...together. I feel blessed to know this special family, the Johnson, impressive in every way. Loves!

  3. I was gone during all of this and hadn't heard most of these stories. Thanks for posting, Sonja!

  4. Sonja, this is such an amazing post. Thank you for sharing this special moment with all of us. This time was also when your sister served me in my time of need. She was a truly remarkable individual. Love to you.

  5. You both are incredible. How I lucked out to get both of you for big sisters I will never know.

  6. With all Alisa was going through, its amazing and sweet how well she looked after your family. What an angel!

  7. Wow! I'm so glad you took the time to write this and share it with us! I'm so inspired by all that Alisa did for you, amidst her own trials. She really is amazing, and so are you!

  8. I loved reading this Sonja - thank you so much for taking the time to write it down.

  9. This is a great way to remember Alisa. Your family is SO awesome! I don't say that lightly, I really can't think of the words to tell you how great you are. Thank you for sharing, thank you for being such a great sister to Alisa, and thank you for being a wonderful mother. You are a great example to me and my family.

  10. I'm so glad you put this all in writing. It's very inspiring to read. Both of you were absolutely amazing during Stevens cancer treatments. Love you both and I'm so grateful for your examples. There is some good service idea's in here too!

  11. I've just been catching up on your blog this morning. Such beautiful thoughts from a beautiful person. I love you.

  12. These stories are touching and inspiring. I'm amazed at your sister's ability to serve in the midst of her own personal challenges. What a beautiful tribute to the connection between sisters. Thanks for sharing. xoxo

  13. Sonja, I just came across this beautiful post. What an amazing sister she was. I can't imagine doing so much while struggling with my own burdens. I think of her often. My heart aches for your whole family when I think of how much you all must miss her, but am uplifted to hear what wonderful memories you have of her. She was so beautiful, inside and out. She expressed to me many times how much she loved you. I hope things are going well with you and your family. Much love! Lindsay Barnes