Friday, August 24, 2012

Half-way

All of your prayers, acts of kindness and good wishes have carried us to this point: half-way through therapy. First of all, don't you love that this is called "therapy?" It sounds so optional, like I'm getting over a fear of spiders or something.

I reserve the right to take back all of these words later, should the bottom fall out and I am completely miserable, but can I just say - This is not as horrible as I thought it would be.

My hair is falling out. All the time, it's raining hair around me. It's kind of gross. All of our garbage cans are full of hair. And yet, so far, I just have a small bald spot that is coverable by a large flower. So, I sort of look like an infant, but it's better than a wig.

I'm not nauseous. I'm not puking. I eat. I'm getting some sleep. I found a few cute hats. I'm driving. I've been to Simon's school a few times. We've been able to spend time with friends. Annie knows that night is night and day is day. I get twenty minutes of quiet all to myself five days a week. The breast to bottle transition was neither smooth nor painless, but it's done.

I am extra tired. But, Ben, my mom and Bayley have taken care of me and taken care of the kids - all FOUR of them. And we are well. Now we just have to talk Bayley into dropping out of college so she doesn't have to leave us next week :)


Tuesday, August 21, 2012

Week #3

Just to clarify this is Ben, so please lower all expectations of writing genius that is my amazing wife.

So we've started the dreaded week #3.  This is the week they tell you about on the front end.  The week that takes you from, "Oh this isn't so bad," to, "wow, my hair, or in this case, my wife's hair is really starting to fall out!" 

Susie is still as beautiful as ever.  She is at the beginning of the hair shedding stage.  If she's around you, she'll just apologize for the hair that she sheds behind.  She's been a little tired, but really, who isn't.  For whatever reason, Baby Annie is still not sleeping through the night at 4 weeks.  She insists on getting up every 3 hours or so for a feeding and a diaper change!

Thanks for your many prayers for us.  We truly appreciate them.  Thanks also for the cards, gifts and messages you send to us.  We look forward to returning home from treatment to see what the mailman has for us each day. 

We continue to feel loved by our Savior, by each other and by you.  Thanks.  Bless the Lord, O My Soul!

In Him,

Ben

P.S.  I recently had the privilege of preaching a sermon.  I entitled it God Wins.  To listen to it please visit:   http://fslumc.org/templates/System/details.asp?id=54337&PG=xCast&LID=9473
Scroll down to the end to find it and listen to it. 

Tuesday, August 14, 2012

Things I Want to Say

At radiation today, there was a film crew there with WDTN. And well, I have a baby. And a brain tumor. Which is obviously pretty exciting. So, they asked if they could sit down with us and my doctor and do a little interview. Which is supposed to be on tv tonight at 5:00. We'll see. If some nutso decides to take Kroger hostage or something, I'm sure I'll get bumped.  If it's on, it will be short and sweet, and I'll ramble like an idiot and still only say a tiny fraction of all there is to be said. So, here's the rest:

1) My doctor's name is Dr. Einstein. Seriously. I'm not kidding. Obviously, he's a genius.

2) I think the point of the news story is to focus on the technology that exists to treat things like brain tumors. And, really, it's pretty amazing. I have a lot to learn about it all, but I want to learn it all. I wish I could sit there and watch someone else get their brain radiated while I asked a zillion questions. But, I'm pretty sure that would violate HIPPA and stuff. So, I just take my turn lying on the table, listening to the machines whir around me, and I imagine all of the crazy stuff it's doing and how much planning went into it, and I am amazed. It is so strange, but the times I've spent lying on a table, crammed into a tube, and/or smothered under a mask, have been the most devotional moments I've gotten to experience over the past crazy months. When you can't see or hear much, and there's a foot-thick door separating you from the world, and there's no way to know how the story goes, but you know how it ends, what else is there to do but worship? And rest and trust. Believe me, it's easier to do those things when you can't do anything else.

3) We live in southwestern Ohio. It has a reputation for being a little lame. But I love it here. One of my dream jobs is to do PR for the Miami Valley because I just love it so much. In March, I was at a conference where a lot of jokes were made about the medical care here in the Dayton area. And, I just kept thinking, I just had brain surgery here. With a teeny baby in my womb. And it was fine. (I just showed how not qualified I am for the hypothetical PR job by starting my pitch with "a little lame.")

4) We were referred to Dr. Einstein because of the technology he uses. But we chose Dr. Einstein because I felt like he seemed more concerned that I had a tumor than he did excited about his technology. Every step of the way, we've been thankful for doctors who are as compassionate as they are competent.

5) My favorite thing about radiation therapy is the planning process. I know absolutely nothing about it, but it strikes me as remarkable. Unlike a drug, where years of research and testing go into creating it and then you put it in your body like a bomb and hope it works, a plan for radiation therapy is specifically planned and tailored to each patient. In my case, Dr. Einstein promises that he planned to minimize the exposure of my scalp, to protect my hair. Unless you're 33 years old, have had long hair your whole life, and are as vain and shallow as I am, you have no idea how much that means to me! Also, that completely validates the fact that I have (because I'm vain/shallow/psycho) intentionally gone to every dr. appt with "good hair" so that they can see how important it is to me to keep it.

That's all for now. Oh, and like Ben awkwardly mentioned, I stopped nursing Annie after two weeks of feeding/pumping around the clock which has been one of the more uncomfortable things I've ever experienced in my whole life. Five days later, I am finally not sending Ben out to the store every night for cabbage leaves. Victory.




Monday, August 13, 2012

And Week #2 begins!

Thanks to so many of you for your prayers, calls, texts, e-mails, cards, and gifts as we started radiation & chemo last week.  Susie did great.  I am so proud of her.  She handles each day with courage and strength, which makes her even more beautiful to me!

The primary side effect she experienced last week were headaches each day and a little bit of fatigue.  They say this is normal.  She also stopped nursing last week and that continues to be hard and have some issues associated with it.

The therapists we work with are great.  They do a great job and make us feel comfortable, loved and cared for each day.  All the kids have come with us at least once to see mommy's "treatment."  Typically Charlie and Annie accompany us.  Everyone at the treatment center loves it and they treat them very special.

We have been told that the next 6-8 weeks will be an uphill battle, and by the end of this week some more significant side effects could take place.  We are thankful for a good first week though and will continue to take it one day at time and try and rest in God's love, mercy and grace. 

Annie is doing well.  She is adorable.  She has done a good job switching to a bottle.  She does okay at night time and keeps us up for at least one longer-than-we-like stretch at night. 

Thanks again for your kindness towards us.  Our family continues to be amazed at the love we have received from so many.  We are especially thankful for Susie's mom, Bayley and Megan as they help each day.  God's steadfast love continues to remain at the forefront of each day for us and we are thankful to experience it. 

Monday, August 6, 2012

Helping the Thomas Family


The Thomases are so thankful for all of the ways they've been loved and supported by their friends, family, church, and community. The cards, gifts, gift cards, and offers to help have meant so much to them on this journey.

Susie begins her radiation and chemo therapy today, Monday, August 6th.

Many people have expressed interest in helping with meals during this time. If you'd like to help with this, I ask you to consider restaurant gift cards, as that seemed to provide the Thomas family with the most flexibility in feeding the family on the "bad" days, while giving Susie the freedom to cook on her "good" days.

Recommended gift cards include:  City Barbecue, Buffalo Wild Wings, Donatos, LaRosa's, Red Robin, Five Guys, Hibachi Grill, Linh’s Vietnamese (937-252-1857 begin_of_the_skype_highlightingFREd_of_the_skype_highlighting), Foy's Grill (937-878-1351)in_of_the_skype_highlightingFRend_of_the_skype_highlig, and Jeet India (937-431-8881).  Other helpful options include Kroger or Meijer (both grocery stores), or Speedway (gas station).

You can mail all gift cards to me and I will be sure to get them to Ben and Susie.

Megan Soderberg
Athletes in Action
651 Taylor Drive
Xenia, OH  45385
 
Thank you all again for your love and support to Ben, Susie, Simon, Talya, Charlie and Annie.  If you have any questions, please contact me at megan.soderberg@athletesinaction.org

Megan


Radiation day 1

I'm laying in bed nursing Annie for what may be the last time. (so, obvi, this is Susie.) As soon as my chemo scrip is ready and I pop the first pill, I have to end this sweet part of my life. I'm not going to lie - that is super sad for me. I'm not scared of formula, I'm just going to miss the gift of being the only one in the world who can give Annie what she needs every three hours.

With that, here are some more specific things you can join me in praying for. Ben will now be responsible for night duty, so I'm asking for rest for him and an easy transition for Annie to the bottle.

Below is a picture of me in my radiation mask. Isn't it creepy? I'm praying I don't freak out, because it is so tight and makes 45 minutes in an MRI seem like a vacation. I'm also hoping I don't sneeze, cough or have a seizure while wearing it because then I'd really lose it. (and possibly break my nose?)

The treatments are short though.

Ben and I snuck away for a little date last night which was great. Simon watched Annie while my mom gave talya a bath :)

Well, here goes. Thanks for praying. Oh and I was just kidding about breaking my nose. That shouldn't happen.

Whatever may pass and whatever comes before me, let me be singing when the evening comes!

Sunday, August 5, 2012

Treatment begins

Bless the Lord O my soul, and all that is within me Bless His holy name!

These words continue to ring true in our hearts and our lives as we have enjoyed Annie's birth and little life.  Every time I look at her I'm reminded of God's goodness and faithfulness to us.  We are so thankful.

Monday morning, we enter a new stage in this journey that started back in late January.  Susie will begin her radiation & chemo therapy treatments.  For the next 6 weeks, Monday through Friday, at 9:25, she will receive her radiation therapy.  She will be on an oral chemo drug as well.

The most common effects that come with the therapies are fatigue, some hair loss and nausea.  They begin to kick in around week number 3, and get progressively worse through 3 weeks after the treatments are over.  We are bracing for all of these, but hoping the Lord will spare Susie as much as possible. 
 
So many of you have been so faithful to pray for us.  Thank you.  As we engage with therapy over the next 6-9 weeks, I'd like to ask you to continue to pray for us.  Pray for strength, grace, normalcy, healing & joy.  May we continue to rest in God's steadfast love, unchanging mercy and abounding grace.