Out and About (or Out and Aboat for my Canadian readers)

Scooter
Zero to 4 MPH in about 10 Seconds

Where the Wild Things Are 
I’ve had a bit more energy lately.  And I’m trying to put that energy to good use.  We have a family pass to the zoo and normally Lindsey and the kids go all the time.  Obviously this summer has been a bit different.  They’ve only been once so far this summer.  This past Friday Lindsey, the kids and I went to the zoo with Lindsey’s sister (and kids) and her mom.  Now how does a guy like me walk around the entire zoo?  Simple.  I don’t.  I rented a scooter :).  I did get some odd looks from people.  Perhaps they didn’t notice the clear tube connecting my small backpack to lines coming out of my arm.  Or perhaps they assumed I was playing a joke.  But in reality, I really did need the scooter to make it everywhere we went.  Now it wasn’t easy in some exhibits.  Some people were very aware and let me go in front of them.  Other people were completely oblivious and would park their strollers in front of me or just stand in the way.  It was kind of interesting to see.  We had a great time.  I even got to ride the zoo roller coaster.  And Grandma Jane gotthe kid’s faces painted .

Kids Faces
Sydney Kitty Cat, Natalie Princess, and Tucker Tiger
Rob and Lindsey on Lake
I like this picture, because even though I have a full goatee, the hair above my lip is darker so it makes it look like I’m sporting a mustache.

Family Time
The other adventure I had was on Sunday.  My mom volunteered to take the kids for a few days.  My sister and her family were also going to be at my mom’s house.  So we had some great family time both in the house and on the water.  One of the most amazing things to see was Natalie’s no fear attitude.  She rode on a tube all by herself and then rode on a ski trainer.  Cousin Kaley had ridden on the ski trainer before and held on with one arm, while raising the other in the air.  Natalie didn’t want to be outdone, so she did the exact same thing.  Four years old and she’ll probably be doing flips on a wakeboard by 6.  Sydney also got in the action.  She didn’t want the boat to move, but she did float on the ski trainer beside the boat.  It was apparently quite fun because she asked to do it again later on.  Tucker didn’t have his suit on, so he settled for riding the ski trainer in the boat.

Ski Trainer

Tucker and Natalie

Child Labor
My desk has gathered a lot of crap on it over the past 2 months.  Today, I started to clean it.  I had a lot of papers that needed to be shredded (Yes, I know the NSA can reassemble shredded documents) but I didn’t really want to pick up a few pieces of paper at a time and feed them into the shredder.  Enter my 3 children who are fascinated by most electronic devices.

Daddy: “Hey kids, you want to help daddy?”
Kids:  “Yes!”

And so entered my 3 little helpers.  I gave each a stack of paper and instructions on how to feed a few pieces of paper into the shredder.  In no time they went to work, taking turns, and shredding a LOT of paper (a lot of medical bills and EOBs (and I mean a LOT)).  Now, the problem was I cleaned my desk too soon.  I ran out of shredable paper and the kids were pining for more.  So much so that Sydney began picking up random pieces of paper saying “Can I shred this daddy?”  I was able to pull Tucker and Natalie away by saying I would push them on the swing.  Sydney persisted and continue to bring me paper to see if she could shred it.  I thought she would eventually come outside since the rest of us were out there, but then it happened.  I looked up through the screen of the window and heard my little girl say “Can I shred this daddy?”  As I began to focus on the object in her hand, I realized it wasn’t a piece of paper, but my Colts Season tickets!  Daddy politely said “let’s not shred that honey.”  As my heart raced, I quickly told Natalie and Tucker that daddy would be back and went inside to make sure Sydney hadn’t yet reached the stage yet where she does the exact opposite of what Daddy says.  Thankfully the Colts tickets are ok (and if you want to buy a game, make me an offer because I won’t be going to any).  And I was able to distract Sydney from the shredder long enough that she forgot about it.  But now my tickets are stored on a very high shelf.

My Doctor Visit Today
Wait, this is a blog to update on my medical status, right?  Well I had my weekly reunion with the Hematology/Oncology team.  The appointment went really well.  It was basically a recap of my 28 days on Blinatumomab (I get disconnected tomorrow).  And a quick discussion on my lab results.  I won’t spoil the numbers quite yet, but Dr. Cripe was pleased with them.  I will not see him next week since I will be off Blinatumomab.  The next time I will see him is 8/24 when I get my BMA.  Don’t be fooled, that will be a big day.

And the Powerball Numbers Are:
I’m putting last week’s number in here for comparison purposes even though you’ve already seen what those are.

8/5: WBC 1.7, Hemoglobin 10.6, Platelets 188
8/12: WBC 2.6, Hemoglobin 12, Platelets 166

Now, you might notice my platelets are down a little bit, but as we talked about last week, they may come down a little bit to my normal level (in the 130’s).  More importantly, at least from Dr. Cripes perspective, my whites have gone up.  As we talked a bit he said it was a good signal to him that my white count had gone up.  And I don’t know why 1.4 more hemoglobin makes a difference, but I feel a lot better with 12 than I did with 10.6.  I don’t need to get my labs drawn again until 8/24, but that’s an awful long time considering I’ve always gotten labs twice a week and recently was getting them every other day.  So Dr. Cripe said it was ok if I had my labs drawn next week.  He just said try not to look to much into the results, as the BMA will be the true indicator of how I’m doing.

Recap of Next Steps
Just in case you have forgotten what’s next…I’ll be disconnected from my 24/7 Blinatumomab infusion tomorrow morning.  That means no more being attached to a backpack that I have to take everywhere (try remembering it when you have to go to the bathroom in the middle of the night).  I will be off the med for just about 2 weeks.  On 8/24 I will go to clinic to have my BMA done.  No matter what the results, I will start a 2nd cycle of Blinatumomab on 8/26.  This will require a 2 day admission (2 days?  That’s child’s play).  If I am in remission, then I will stay on Blinatumomab while we start the SCT process.  I will discontinue the Blinatumomab as soon as the stem cells are ready.  If I am not in remission, the I will complete the 2nd cycle of Blinatumomab and we will do the BMA again and reassess.  You may not realize what I would like to see happen, but I really want to be in remission now 🙂

A Duck Dynasty Prayer
Father God, thank you for getting me to the end of another cycle.  Going through it can be tough, but seeing it in the rear view mirror is always rewarding.  The horrible parts fade away and I am grateful to have the treatment option I did.  The thoughts of remission are cropping up again Lord.  I’ve been focused for 28 days on one thing, Blinatumomab.  Now the studying is done and I will be taking a major exam.  You already know the result.  You already know the plan.  I thank you God that you know every hair on my head.  That you will comfort me and hold me through the tears and the praise.  Let me not forget your sovereignty.  Let me cling to your love.  I trust in you God.  I cry out for remission, but no matter what, I walk in your light.  The shadow of cancer can not pass over me.  Let me face these tests with the certainty of you.  You are my light and my salvation.  Whom shall I fear.  Thank you for carrying me.  Thank you for another day.

17 thoughts on “Out and About (or Out and Aboat for my Canadian readers)

  1. Wonderful post, Rob!! Getting ready to pray for you and Lindsey right now as I go to bed. It was so great to hang out with you all on Sunday. Enjoy your freedom from the backpack starting tomorrow. And on a lighter note, I’m really glad Sydney didn’t shred the Colts tickets- especially the ones for October 25;-)

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  2. P.S. have you heard the story of how Coach Dungy’s youngest son “signed” his Dad’s football? It was the one the team gave their coach with all the players’ signatures after they won the Super Bowl. I heard his wife Lauren speak at a Christian conference and apparently their young son (who they had recently adopted at the time) was proudly saying how he signed his name with a black sharpie right next to Manning😁

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  3. It is wonderful to see the pictures of you and your family sharing some “normal time together.” Prayers continue and I want you to know that you give many people strength and blessings when you share your thoughts in your blog. Thank you for being the strong Christian man that you are.

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  4. You must have been spending a lot of time at 4 MPH on that scooter – and enjoying the heck out of it. I can see the bugs in your teeth. Love the painted faces. Prayers and best wishes.

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  5. Oh Rob this post is SUCH A GREAT REPORT! I LOVE seeing the pictures of you all as a “normal” family doing all the fun things families get to do. Praying daily for your health and the strength to carry on daily with your fight. Enjoy your freedom from the IV and keep up the GREAT job of staying positive!

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  6. I am sure you will be giving loving and strong Rob hugs to your family with both arms free to wrap around. Love the pictures you posted and all the positive attitude with which you keep us all strong right along with you! God is with us each and every day, a precious gift, right along with His giving me the precious gift of you, my son! Mom/Bammie

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  7. Hi Robbie! So good to see you in pictures. You look great, and I am so happy to hear that you are feeling more energetic. I think of you often and am sending warm healing thoughts your way!! Virtual hug to you and yours!! JenSim

    Liked by 1 person

  8. Thank you, Rob, for your update. You are strong, trusting and hopeful. God is stronger, comforting and faithful. Your name and your family are lifted before God’s throne many times a day.
    Yes 8/24 is a huge day! So happy for you that your 1st cycle is ending!

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  9. Rob the pictures are so great! Stay strong, you have marched like a strong soldier and are almost to the summit of your battle. You will make it through all of this and have so much to offer your family and other with your experience! Many prayers are sent your way!

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  10. Rob you continue to blow be away and inspire me with each new blog post. I envy(that’s not good.) I admire your strong faith. I love how you strive for normalcy in all this. The pictures are great. Your words are powerful, and God is good all the time. Continues best wishes.

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