Sunday, June 5, 2016

Now what . . . ?

Chemo is complete!

Did you catch that?  I said, "Chemo is done! Finish! The End!"   After more than 250 days of fighting this beast, this part of the fight is over.  Chemotherapy treatment has been completed.  He rang that lovely bell.

Perhaps we are a bit over zealous in our celebrating, but when you've gone through all the poison, nights away from home, missed events, major surgeries and massive amounts of medicine that Mac has gone through, you want to go out with a BANG and you want to shout it from the roof tops . . . or at least from the side of your vehicle.  "MacKale's last round of chemo!"

Yes it was chemo week, but dang did we celebrate.   So the little boys came down to spend Mac's last day with him.  They went to hospital school  . . . .  (By the way, ummm hospital school had it's last day of school last Friday so 'why are we still in school?' . . . That's what the little boys want to know . . .)

We hip hip hurray-ed with our favorite Ortho PA (Love that Anne . . . ) . . .

. . .  loved on some spiky pets from the zoo . . . (it wasn't puppy week but hedgehogs are a pretty good second place . . .)

and when one of the other little girl, patients wanted to see all the boys on the floor get their nails painted . . . we wanted to see her smile . . . all three boys obliged.

Anything to put a smile on a 9th floor friend's face.

And continue to celebrate each day that we are able to be together at home, at school and with our friends and family.

But what does the end of chemo really mean . . . I mean really?  Aren't we so so so happy?  Well yes, we are elated and over-joyed . . . but at the same time I have to tell you what the end of chemo doesn't mean . . . Unfortunately, it doesn't mean that he is cancer free . . . we just don't know that yet.  There are scans that need to be done and those aren't scheduled until the middle of June.   Osteosarcoma is a beast.  I've told you this before.  It is relentless and frustrating and likes to come back  . . . especially in the lungs.  So we wait those scans on bated breath . . .  The scans will tell us if MacKale has 'No Evidence of Disease' (or NED)  I love Ned, I want Ned . . . Ned needs to come live with us and take residence in our lives forever!   So when you pray for MacKale . . . pray for NED.   Because of osteosarcoma's relentless personality, we will continue to have scans every three months for the first two years, then every six months until he hits the 5 year mark.  When you hit the five year mark . . . well that's when they believe you're in the clear for relapse.

Now you understand why I tell you . . . osteosarcoma is a beast . . . this journey is not a short one and we WILL celebrate every milestone and every day.  Because no matter what, each day that MacKale is with us, he is a survivor.

So we are living our lives!  MacKale and I are blissfully happy to be back at school.  Sunday night was like the first day of school for us.  I think we both were excited and a little nervous at the same time.  Mac mentioned . . . "mom, I can't remember when I have been in school five days in a row. . ."  I had to admit . . ."neither did I." I'm back with my kinder friends at Franklin and he's at the Middle School.  Most days he's there half a day so he can attend PT in the afternoon and he then shows up in my classroom at the very end of the day.  My sweet kinder babies remember him well from when he would come help them at the beginning of the year.  I was thinking that when they saw him they would comment about him losing his hair, but all they kept saying is " . . . MacKale, you got so big!  We missed you!"  Thank you my little friends.  This is why I teach kindergarten.   They always know exactly what to say.

He's sporting a new brace now too!  And  . . . drum roll please . . . wearing TWO shoes!  He's trying to put more weight on that leg  . . . and working towards getting mobile.  Because you know . . . there's golf to be played and camp and brothers to be bugging and . . . he just has stuff to do.  And we are so glad that is is excited and anxious to get out there and do it!

While it is so incredibly good to be home and away from the hospital, I will tell you, it is a bit of a doubled edged sword.  While we are delighted to be done with chemo, we are not naive about osteosarcoma.   I worry that because we aren't fighting the cancer actively with chemo, it will come back.  It makes me desperately miss my staff at DeVos, the experts that have supported, cared and held us up during this fight.  The love I feel for this people is to big for words, and I depended on them.

But this is where faith comes in . . . and this is where we put it to work. Yes, I have that nagging worry and fear in the back of brain, but I have to believe that God has our family in his hands . . . He will lead us through this with all of your help.

I started this blog to solicit prayers for MacKale during his fight against cancer, and I will continue to beg you for more and more and more . . . unrelenting prayers on his behalf.  We know this road is hard, but it has been bearable . . . sometimes even a pleasure because you have all been with us.  We can't do it alone.  I know that some folks are very private about their cancer fight and I respect and completely understand their need to be private.   Everyone deals with this fight in their own way.

We (or maybe it's more accurate to say "I" because, quite honestly, my poor family had no choice.  I was determined to get prayers for Mac.), for better or worst,  decided to lay it all out there -- all our fears--our treatment--the good--the bad--and the ugly, because we ARE weak and we DO need you. Selfishly, I can't imagine doing this without all of you.  So please keep us in your prayers.   We are not done yet . . . God isn't done with us yet . . . I told you I believe He will make something good of this . . . There still more to this story and we need you to be part of it.

Thank you always for loving us enough to keep us in your thoughts and prayers.  God has blessed us greatly with each and every one of you.


  1. Marsha you are amazing. I am blessed to have you and your family in our life. We love you all and always have you guys in our prayers.

  2. Excited for you and your family. praying that that stupid cancer stays away for ever.....GO NED! Can't wait to see your guys out on the golf course! HUGS to all!

  3. Praying everyday for each of you, that the Lord brings Mac healing and most importantly now.....NED! That you, Mike and the boys have strength as you continue the fight, and most of all that He will use us and call upon us in any way you any hour. Know that without question, we will answer that call for any one of you, regardless of the cost. Your family has been wonderful friends to my sister and hers, and an unexplainable inspiration to mine. So just know that although the occasions have been rare that we've actually had the opportunity to spend time with all of you, we have deep love and respect for you all and will be there at a moment's notice should you need anything. ☝☝☝

  4. We've all been with you through the beginning and middle of this journey. And, we will stay with you until the day comes that MacKale gets the all clear. And, that day will come! Let's go Ned!

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  6. I know that you are aware that you have people all over the world praying for your family. My grandchildren live in Sicily on a Naval Base with their parents and they have added MacKale and your family to their nightly prayers. I have personally felt the power of prayer in my life and have read your experiences with this as well, but sometimes it is just nice to hear about how far and wide your story has traveled. I know that we are all blessed by your willingness to share your story and experiences with us and although you haven't met all of us, your family has touched us and we love all of you! Thanks for inviting us to be a part of this miraculous journey!

    1. Thank you for those precious prayers.

  7. Go NED!! As I shared earlier this year, I have followed you blog for years and use so many of your wonderful TPT resources in my centers. Even though we haven't met, from my little "colored noodle-dye" - stained classroom in northern WI (yep... your sensory stations were a hit!), I followed your journey, and every time I look at those marks on the counter I said a little prayer for MacKale and your family. On the last day of school our custodian told me he could probably get those off this summer. I told him to please leave the for now... maybe I'll let him clean them off in 5 years <3. Congrats on the end of chemo, and prayers for NED and 5 uneventful years!!!

    1. OMG I'm in tears Sarah. What a wonderful story for me to tell MacKale. Yes, please keep praying for NED and Mac and all of us. You are a blessing to me.

  8. So VERY happy that chemo is complete!!!! I hope you all have a wonderful summer as Mac continues to heal and grow stronger! Continuing to pray for complete healing and strength for you all! :o)

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