Two years post treatment--officially--and Merry Christmas!

I don't post very often anymore, and I have been meaning to post for a week about Steven's most recent scans.  They looked great!  He went in the week before Christmas.  He's had a cough (possibly multiple coughs) since his last scans.   I can't deny I was worried about metastasis.  But I was very busy with Christmas preparations and school events and so I didn't have much time to worry.  Besides, Steven was adamant that everything would be fine.

He was right again, thank heavens!  The ECHO was good and so was the blood work as well as the scans. We felt so grateful and happy.  I wanted to shout it out to the world on social media, but something held me back.   The same week as Steven's scans, one bone cancer (Ewings sarcoma) boy got news of relapse and another Ewings patient was waiting on a lung biopsy result, which luckily turned out to not be cancer.   And with all that, a month or so ago, a little osteosarcoma patient who also had a rotationplasty, died of heart failure from her chemo.  And so I took our good news with a dose of reality.   I am so grateful for every day we have with Steven.  I hope with every ounce of my soul that it will be a lifetime of days.  But even good scans this time is no guarantee that he will live relapse free forever.  I wish I could just live like him--smothered in hope with no room for fear.

I try to have that kind of hope and I think it will be easier to go forward now that we have a six month break until his next scans.  For the next three years, he will get scans every six months.  When we hit the five year mark, he will go annually until he hits the 10 year mark.    We have a lot to look forward to in those months and years--we really are so blessed.

Hair cuts

It is so crazy to me that of the 400 cases of osteosarcoma every year in the United States, one of them this year is a boy at Steven's school and in Steven's grade.  And from what I understand, his tumor is on the same bone and on the same leg as Steven's. They've never been in the same class, so Steven doesn't know him very well yet.  He's been in treatment for a few months and is getting his surgery this week if all goes well.

At the school, the sixth graders and several of the teachers and staff shaved their heads or donated hair to Locks of Love yesterday to show solidarity to this boy.   Steven wanted to be first in line--I think he really wants to do something to help him, and I haven't been the best at finding him an opportunity to follow through with that desire.  I was so grateful that the teachers and kids at school planned this support day at school.   Steven loved it! 

Addie has been growing her hair out for some time now.  This week she decided it was finally time for her to cut her hair and donate it to Locks of Love.  Once she decided to do it, she didn't hesitate.  On the way home, I said, "There are going to be a lot of people who are sad you cut your hair." 

She said, "Well someone who doesn't have hair will be very happy I cut it." 

14 inches to Locks of Love

Steven and Addie

Andrew finally succeeds in his photobombing efforts

Some fall pictures

The kids--all grown up and off to Hogwarts

The boy who lived

A rare shot of Molly holding still

Pumpkin picking--a hard choice

Hatching a monarch--an exciting development.

Steven played soccer this fall and loved it!  He tried his hardest and got lucky with his team.  They were undefeated this fall. 

A birthday

Today is Daniel's birthday--I can hardly believe it has been a whole year since he was born and died.  The year has been long in some ways, and yet sometimes a wave of sadness will wash over me that is as fresh as it was a year ago.  It isn't as debilitating now, but I think about him every day.

I was thinking about what I wanted to write on my blog for his birthday, and I have decided to share a few things I've learned or experienced with grief.  I am not an expert, but I know more now than I did a year ago.  And maybe something I share can be helpful to someone else.

Those first few weeks and months I found the grief very intense.  I would cry all the time and hold his blankets and stay in bed.  I was recovering physically, so that didn't help either.  I think my kids were really worried about me, they hadn't seen me so sad before.  While I was very sad, there was also a very real sense of peace in my heart.  I know that Christ's promise that "blessed are they who mourn, they shall be comforted" is very true.  Not only did I feel His presence and love very strongly, the people around me acted as his hands and fed, loved and cared for me and my family.  I am amazed at how helpful all the kind notes, gifts, and words of encouragement were to me.  When someone is grieving, it is best to act, even if it is something seemingly insignificant, all of it is meaningful.  "I'm sorry for your loss" works well, if you don't know what to say.  Just acknowledging the loss is helpful, I know I felt more comfortable around people that I knew had already heard what had happened.

As the months went by, I started feeling better and getting back into life more.  The puppy was a big help in some ways, and a total nightmare in others!  But she gets me out of bed every morning and makes me take a walk which is a huge help.  But getting back into my old lifestyle was very hard.  I have had to work to keep up with the basics of caring for my family, where before I could do that and extras.  I got very frustrated with myself and felt very overwhelmed.  My grief counselor told me that sometimes it is in the 3-8 months after the loss that things are the hardest.  I certainly found that to be true for me.   I felt very alone and that life was marching forward without me.  Part of me wanted to stay behind and grieve, while part of me was ready to move on.

A few months ago, I started to feel really pretty good--almost back to my old energy levels at times.  But then at times, the sadness sweeps in and I feel overwhelmed again.  And I get behind and start a cycle of feeling overwhelmed.  I have to work extra hard in the times that I feel good to even stay above water.

I learned that it is very important to take some time out and mourn my loss.  I learned that grief and mourning are different and that mourning is essential in healing from the grief.   It is something I haven't done as well as I should.  I have also learned through cancer and this stillbirth experience, that life is so short.  So I have a tendency to want to do fun things with my family and over commit myself and just get the very most out of life.  But that wears me out more than it used to, and so many simple things have suffered.

Today the sadness hit me harder than I expected it to.  We woke up to a snowstorm--great big flakes of white snow.  It felt like a little sign somehow that God hadn't forgotten either, and that somehow it will all work out.

Two years (almost)

Good news! Steven's scans were good today. Last night as I was saying goodnight to him, I asked if he was nervous and he said, "Not at all. Mom, they are going to be good. Don't worry." He was right, thank heavens! If attitude has any sway on cancer, then he has this thing beat. (Don't take that wrong--I'm all for chemo, trust me! It reminds me of a deep thought by Jack Handy "Dad thought laughter was the best medicine. Maybe that's why several of us died of tuberculosis.")

Slightly dissappointing to us was that he has to go back in December.  Not because they are worried, it's just that he needs all his yearly appointments, like an echocardiogram.   Plus, even though we are only weeks away from his two year anniversary of finishing chemo,  it was November when they did his post chemo scans.   And he forgort to drink anything this morning which threw off one of his tests.  

So I guess we'll be doing this again sooner than I had hoped, but that is okay.  We'll be extra sure before we take a six month break that he has no more cancer.

For today, I will just take a deep breath and thank God for giving us even more time with this darling boy.

Summer has come and gone and it was lovely.   The kids are just at the perfect age to be excited about all my adventurous plans.  And they were perfectly happy to hang around at home when I wanted to do that instead.   I was kind of sad to send them off to school this year.   I cried for hours the morning I sent Laura to kindergarten.  It's kind of lonely here in the mornings.  But I have plenty to keep me busy for now.  I'm not sure what it is happening to me.  I used to be on top of my life but as the last few years have presented some serious challenges, I feel like things are starting to break down big time.

But today might be the worst day of all to assess my mental health.   Tomorrow Steven has scans.  I am hoping that everything is great, but he has had a cough and lately every single time he coughs, I feel like I did that first time they told me he had cancer.  That fear only lasts for an instant and then I reassure myself with statistics and other evidences of health.   I want so badly for everything to be okay that even the thought of finding anything on the scans is devastating.

Luckily, he isn't worried.  He doesn't seem to notice he is coughing or if he does, has not associated it with cancer.   He is as happy as ever--he even knows about the scans, but doesn't seem worried.  I must be doing a pretty good job of hiding my anxiety from him.  He has seen it before and has called me out on it too!  He will be worried going to the hospital tomorrow, but he has been spared the weeks of agony that I've endured.

Steven is doing so well.  He started playing soccer with a regular recreation league.  His team is really good to him and he loves it.  He watched his siblings play last spring and he was determined to be a part of soccer himself.   He has a long way to go, but he puts his whole heart into every game and it is fun to watch.   I was telling his story to some of the parents on the team and they were blown away.  Nobody guessed that his foot was on backwards!  Or that he had only been walking on a prosthetic for 18 months or so.   He can run a little and walk forever.  It doesn't hurt him at all--if anything, just his muscles ache after hard exertion.

We had a fun opportunity at the end of the summer.  My sister and her in-laws invited us to a family cabin in California by a lake.  It was a magical week--perfect weather, bright stars, good food and excellent company.  The boys were absolutely in heaven with water, dirt, fishing, kayaking, and card games.  My kids had already adopted their cousin's grandma, but "Grandma Vicky's" fishing tutoring (and let's be honest, she did all the hard parts of fishing) have cemeted their love for her.  The whole thing was absolutely beautiful.

Here is a video from the week.  Our family does a film festival every year and this year one of the themes was reality TV.  We made our own reality TV short and based it on an idea Grandma Vicky had to award the kids "Man Beads" for all of their accomplishments at the cabin.   The boys spent a couple of hours working out all the achievments and had quite the list going.   This is only a short part of the fun, but hopefully you'll get the picture.

Summertime

Summer has been a whirlwind of activity around here--I don't get to laze around much, but when I do it turns out that I don't blog. 

I can't believe that summer is almost over for us.  We have a few precious weeks left and we will use one of them for a camping trip.   We have almost accomplished all the things on the summer bucket list but the one thing we haven't done enough of is nothing at all.   We just haven't had time to be bored. 

I did something I never thought I would--I sent the boys to a week long summer camp.  It's called Camp Hobe and it is for cancer kids and their siblings.   I just felt really good about sending them and it turned out well--they had an absolute blast.  Steven even wrote me a letter from camp....something along the lines of "you were right about the pranking, Mom.   We are in prank war with cabin 10.  The food is awesome."   Steven was the only amputee there but his counselors said that nothing slowed him down.

We've been busy with scout camps and cousins and water fights and dog walks and crafts and piano lessons and play dates and parks.   It's been a great summer.  Steven's prosthetic has the wear and tear and dirt to prove it.   It will be kind of hard to send them all to school in the fall.

It is quiet days like Sundays when I am still that I get sad about Daniel.  The other days are so full, I come to the end of the day and find myself totally spent.  But Sundays are different and I wouldn't have them otherwise.  I like to think about things and try to make sense of them and remember.  The pain is less sharp and less often and sometimes feels a little like longing.  I keep trying to envision myself sending the kids off to school and me being here alone.  It's a difficult exercise--maybe because I didn't intend for it to happen this way or maybe because it feels too lonely.   But it is coming right up and so ready or not, it will be me and the dog here in the mornings. 

But for now I am trying to just take each day one at a time--school will be here before we know it, but hopefully that will just make the next few days even more precious.