Thursday, April 28, 2016

Will It Be Too Much?

This week marks seven months . . . seven long arduous, months that our family has been on this cancer journey with MacKale.  When I think back on that first stay in the hospital, those days when we were confirming MacKale's osteosarcoma diagnosis, it all seems a little surreal.  We were absolutely clueless, in shock and numb.  But there he was, thumbs up and ready to take cancer on. That's Mac!

By the grace of God, we survived those first days, and, somehow, things have now become familiar here at the hospital and days can even be almost comfortable.  Devos has become our second home. We know our nurses' names, we depend on them, and think of them as part of our family.  They represent security and feelings of safety for us.  Likewise, names on the doors of the 9th floor rooms belong to faces of  patients we know and who are traveling a similar journey that MacKale is traveling.  We hold them in our prayers each night and root for good levels and clear scans.  The doctors . . . well, you know we adore Dr. Mitchell, but really, all the docs are familiar and marvelous each in their own way.  Of course, the doctors joke and tease MacKale, which he loves, but, let's face it, he is often the master jokester himself.  He's clearly very comfortable with them.

The security folks recognize our name when we check in for our badges.  Child Life volunteers know that Mac is a card shark, and we have met all the therapy dogs and have learned to request our favorite one when they visit.  

We have our favorite patient rooms, we know which ones have the hottest showers, which are the biggest and which ones have the most comfortable pull out beds for parents! (Yea,  that would be NONE!)

I personally have developed a keen sense of  knowing what time there isn't a line at Starbucks, I greet my baristas by name and  they know my order without my telling them " . . . venti vanilla chai latte for Marsha (that's with a 'sh' not a 'cia')--extra hot!" It's not my hometown Java, but it works in a pinch!

We know where they hide the big Styrofoam cups in the nutrition room,  how many laps around the 9th floor it takes to travel a mile, how to ask for the best chap stick and we know when the best time it is to try and do a load of laundry.  

We've also developed a keen understanding of medications and 'levels' . . .  white blood count, hemoglobin, platelets, magnesium, phosphates potassium and ANC. 

We know which meds work best for which chemo in deterring nausea for MacKale, and we have a highly sophisticated routine for working Methotrexate out of his body that involves massive amounts of liquids, walking (or crutching) and music.  

Even when those walks last late into the evening when everyone else is sleeping.

These are all highly valuable bits of information, I assure you.  And while all this familiarity and intimate knowledge of the workings at Devos has made things infinitely easier at times  . . . I could, quite honestly, do without it.  It's really information I could have gone my entire life without mastering, and I would be ok with that.  

I would much rather go back to the way things were when I lived in my little 'cancer ignorant' bubble. When juggling, work, home, boys and boys activities were our greatest challenges.  When Mac was healthy and mobile and whole.  

But this is our life now and this our journey and we continue to put one good foot in front of the other . . . 

  .  .  .  but I will tell you, though, as 'familiar' as we have become with cancer . . . there are days . . . many days when we are simply weary! 

There are days that we are still flying 'blind' and when I wonder if 'all this' will be too much for me, for Mike, for MaGill and McCoy and most importantly . . . will it be too much for MacKale?  Will all 'this' effect him in such a way that it makes him, not 'him' or us not 'us' anymore.  . .

Today, is a day when we are weary!  Our last two rounds of methotrexate, our easy chemo, have left us weary.  We are typically rock stars at this chemo.  We know what we need to do.  Mac sleeps as soon as he gets his chemo, then he walks and drinks for two days straight and then we knock out our levels and go home in record time.  But these last two treatments, despite our regular routine, have taken longer . . . it's been more work . . . more time away from home and we are weary. 

On top of that, at some point in the middle of the night last night, MacKale's body decided to spike a fever . . . then it didn't  . . .  and then it did . . . again.  When you're in the middle of 'the fight,' there is absolutely nothing worse than being blind-sided.  Fevers are frustrating enough.  They mean disrupted sleep and extended stays and extra pokes.  We were both exhausted and frustrated and emotional last night and yet, when they came to do an extra peripheral poke on MacKale  in the wee hours of the morning to rule out infections, Mac was compliant and polite and helpful and sat right up and chatted it up with the tech.  He was 'Mac.'

"Here use this arm.  This vein is a good one, see?  Now, you tell me when you're ready, and I'll hold my breath and close my eyes.  When you see that, then you go, ok?  My Grandma Shirley taught me this when I was really little . . . like when I was 3 I think . .  if I just sit on my other hand, close my eyes tight and count to ten, it's over before I can count to 3 or 4."  "You ready?  Ok!" "You did really good.  I hardly felt that at all. Nice!"

He's still in there!  Despite exhaustion, frustration and feeling down . . . he is still 'him' . . . 

Yes! We are weary and we might not exactly ever be exactly 'us' again and MacKale might never be exactly the 'Mac' he used to be, but perhaps, all "this" is God's plan to make a better . . . a stronger 'us' and make Mac a stronger, more amazing 'MacKale.'

"He gives strength to the weary and increases the power of the weak.  Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not faint." -Isaiah 40:29-31

As for prayers . . .

Your prayers are precious to us.  Please continue to keep us in your prayers.  Pray that we will find strength during these days of treatment, that the chemo kills all the cancer in MacKale's body, pray that he will soon be able to be mobile and continue to heal.  I can only continue to believe that God will turn all of this into something good.  Thank you all for being our rock and strength when we get weary!


  1. Prayers being sent right now for strength and patience and Mac's continued humor. Thank you for sharing your Journey. God Bless you all. Love from Leland.

  2. Prayers continue for MacKale AND his remarkable family.

  3. Thank you for the update. The picture from First Communion is precious. Prayers continue.

    1. He loves his brothers . . . when he's not picking at them. :)

  4. He lifts up the weary hands ands gives strength. Still praying and still believing that God will do exceedingly, abundantly above!!
    Hugs and prayers.

  5. I think He's already turning it into something good. I can't help but think thru all the publicity during March Madness, Godwasn't using that to reach people. You are an incredible witness! Prayers being said for all of you.

  6. Bless you all. This truly has been a year that you never planned on. But look at you! You all have trudged through this and reaching the 7 month mark is a huge milestone. You have been in my prayers every night. Tenley continues to ask about Mackale and wants to see new pictures. Today she painted a picture at my house. Right off she said, "This one is for Mackale. Can I go with you when you take it to the post office?" I have to love her spirit for reaching out to Mackale. He's her hero for sure!

  7. Thank you Marsha. I could have written this myself. You are so good with words. We are at 8 months now, with probably 7-8 months to go. And we are weary as well. Luke has chemo Mon-Fri next week. Maybe we'll see you. If not, we pray for Mac and your family every day.

    1. Love you guys. You're in our prayers each night. (We are inpatient M-T next week --cross our fingers!)

  8. You have my fervent prayers twice a day. How special and precious your beloved son! I lack for words after reading your heartfelt posts. But I never lack for admiration and awe. God bless your whole family. Cure him, God. Please nothing less than a cure for this precious boy. ❤️

  9. Abundant love and prayers to all..we lift you up in strength and perseverance, you shall not fail. Peace be with you. The parents and family of Coach Benzenberg

  10. Continued prayers for all of you. Jacob looks forward to having MacKale back to school soon.

  11. We continue to pray for all of you and ask God for strength, patience, comfort, grace, his amazing healing and yes joy too!

    Larry and Joan

  12. gichi-manido-giizis dapaabam gizhaan gwiiwizens
    Great spirt moon look! watch this child.

  13. Sending you guys all the strength and prayers I can offer! xoxoxo

  14. Sending so so many prayers and love and hugs your way, Marsha. You're such a strong mama. <3

  15. Hugs and many, many prayers <3

  16. You and your family are always on my mind and in my prayers. I keep you all close to my heart!

  17. Marsha. #TrueStory. I have never ever seen an eagle 'in real life' before. About a month ago we were watching a TV documentary and there was a section of eagles and how they fly so high and yet swoop down and pluck a fish from a body of water. We had quite a conversation about how on EARTH that could be possible, me saying that "I don't even believe it." More than once. Cuz I'm stubborn like that.

    Well within 36 hours I'm dropping my fishing husband off at a lake. He is backing our boat into the water, when I see this eagle come flying in lower and lower circles. And suddenly this eagle, RIGHT BEFORE MY EYES, does a 90 degree drop into the water and snatches a fish out of the inlet. RIGHT THERE. RIGHT NOW. RIGHT BEFORE MY EYES.

    Me. Who had just said outloud, "I don't believe that."

    At the time this all happened, I kept talking and talking to heaven and my guardian angel and kept saying, "You're really working on my faith. What am I supposed to learn."

    All I can testify, on a Bible, is that EAGLES ARE INCREDIBLE. I SAW! Right immediately after I said out loud, "I don't believe it."

    Eagles do mount up. You will rise above this. ALL of this. It says it right there in scripture and you've quoted it. Now I am here to tell you, that you are right.

    You are beyond exhausted. I am sending you all the HOPE and all the energy my prayers can send.

    Know that. Believe it. Eagles do all that and more!

    You are my eagle.

    I'm praying for you.