Ohhhhhh, That’s Why

Tucker like a wolf
Tucker like a wolf

Wet and Worn Out  
Today was our first day at Great Wolf Lodge.  So for so good.  Lindsey’s sister and her family joined us for the trip.  The kids have had a great time going down slides and splashing around.  We went down a big slide on a tube where everyone sits inside.  We went down as a family and Sydney may or may not have cried the whole way down.  She said she wanted to go, but apparently had second thoughts.  On another individual water slide Sydney was a little hesitant as well.  I did the most fatherly thing I knew and gave her a little push with my foot as she screamed “NOOOO!”  However as soon as she got to the bottom, she screamed “I want to do that again!” and proceeded to go down the same slide 6 more times. We  check out tomorrow, but we’ll spend part of the day back at the waterpark before heading home.

 

The kids have always seen the damn from the boat, so we took a trip to see the other side.
The kids have always seen the dam from the boat, so we took a trip to see the other side.

My Bone Marrow Bucket List
The last time I wasn’t on medication, I had a little Cancercation.  I wasn’t quite sure what to call these 2 weeks of my life while I wait for Donte’s stem cells (I’ve named my donor Donte), and then it hit me.  My bone marrow is going to die.  And typically before you die, you want to accomplish your bucket list.  So I decided these two weeks should be about accomplishing my bone marrow’s bucket list.  Granted, my bone marrow doesn’t have a lot of money so it’s not like we’re going to Australia or anything.  But we are here at GWL.  I was also able to take my bone marrow out on the boat one last time and to see Oakdale Damn.  My bone marrow and the kids went to Camp Tecumseh and played on the Three House Tree House, as well as the playground.  And they got to go to the min farm.  So overall, I think my bone marrow is checking quite a bit off its bucket list.  It’s going to go to hc1 one last time as well as one more trip to Camp T.  Then it’s a weekend with the family.  I’ve contemplated taking my bone marrow to the Jets/Colts game, but I sold my tickets.  I may just pick one up on the secondary market.  What do you say bone marrow old buddy?

A Curious Question
One thing that Lindsey and I have been wondering is why we tried to find a related stem cell donor first (my sister).  When we met with Dr. Nelson, he said he’d actually prefer an unrelated donor for my type of leukemia.  We also know that women may develop antibodies while pregnant that can cause issues in transplant.  So we were somewhat unsure why we went through the process of screening my sister, who has 3 kids, instead of just finding a male match on the registry.  Well, today, we found out.

Hi Rob, It’s Cheryl.  I’m Sorry, but…
I was sitting in the van after Natalie had just finished with gymnastics.  She was getting buckled in and I was staring at the number on my phone.  It was an IU Health number.  I don’t always answer those calls, but I decided to this time.  “Hi Rob, it’s Cheryl.  I’m sorry, but I just found out your donor is on a 1 month medical hold.”

Well damn it Donte.  Way to go duck things up.  But now we have the answer of why a related donor is preferred.  Since you are related to them, you can go smack them around if they try to go on a medical hold.  In my situation, that’s not possible.  So since they are on hold, essentially I am on hold.

Well, Looks Like I Have Next Week Free
I was going to see Dr. Nelson on Monday and be admitted on Tuesday.  Both will not happen.  We’re not sure why Donte is on a medical hold.  But Cheryl isn’t one to take things lying down.  I had multiple matches on the registry and she has put in an urgent request for the 2nd person on my list.  So Donte, we must bid you a farewell.  Thank you for your efforts and I wish you the best of luck.  Apparently my stem cells will be coming from door number 2.

Soooooooooo…What Do I Do Now?
That’s a good question.  The immediate answer is I’m going to post this blog and then go to the arcade.  I’ll play in the water tomorrow and then we’ll head home.  The longer term plan will be worked out by Dr. Cripe and Dr. Nelson.  It’s possible that I will go back on Blinatumomab.  It’s also possible that there will be a very short delay and the only thing that will change is my admission date.  Either way, this is just how cancer works.  And really life in general.  Sometimes you take a step forward.  Sometimes you take a step back.  Some times you take a step sideways and sometimes you step in a big old pile of, well you get my drift.

A Duck Dynasty Prayer
Holding.  10 Yard Penalty.  That’s kinda what if feels like God, but I know with you we just pick the ball back up and keep moving to that first down.  It may be 9/23, it may be 10/23, but you have provided many matches for me.  Many people have signed up to give a bit of themselves to save someone’s life.  I pray for this new person.  I pray that they are available and healthy.  That they are willing. Thank you for they willingness to give life to me.  Thank you for your presences in this process.  Thank you for another day.

11 thoughts on “Ohhhhhh, That’s Why

  1. Focus on the geart tme with your wonderful family! So lucky.
    God will answer your prayers and all will work out, maybe not on your time line, but he is there for you.

    Liked by 2 people

  2. Continuing to pray His very best for you concerning your donor. For some reason that wasn’t me (and you wouldn’t have had to smack me around since I had already presumably cleared my calendar for the entire summer and fall:-) and likely won’t be Donte (although maybe you would have been a walk on as a WR for the Colts once you got his stem cells).
    I will continue to trust God in His ultimate wisdom and plan for your SCT timing and donor. You are such a great example of trusting God’s plan, even when it moves you sideways. 💜

    Liked by 2 people

  3. Grrrr.
    You’re so calm and thoughtful and that is good– let the rest of us get mad. This stinks! Darnit! Stomp spit.

    Prayers for a resolution, a plan, and quickly.

    Liked by 3 people

  4. big sigh. I’m sorry. It sure does stink, but I know that even though these things frustrate and upset our plans, God’s already got this worked out. Praying for patience for you and clarity for all the medical folks working on God’s plan for you.

    Liked by 3 people

  5. Sorry about the speed bump, Mr. Culross. The plan for the next phase was all laid out. Wonder what God has in mind? Maybe “door #2” is super stem cells. Bless you for being patient with God’s timing. Thank you for always sharing your humor, knowledge, and faith in your blog. We’ll just keep praying!

    Liked by 2 people

  6. When we live in God’s love, then we know that what happens is for the best. Even when faced with something illogical or unexpected that seems to muck up our design, we know that there is a Grand Logic and a Grand Design behind it. I’ve heard other people say that a prayer that helps them is “God, if You want it that way, then so do I”. The great thing about that prayer, and about God, is the “either-or” aspect, both sides of which are very comforting. Either God wants it that way because He has a pretty damned good reason. Or He doesn’t, in which case the Powers of Heaven are fiercely working to change it. Either way, you win.

    Love, Uncle Claude

    Liked by 4 people

  7. Isn’t it interesting that an enormous part of our faith in God is to have patience, and in this case patience is being tested which means our faith must strengthen. I choose to believe Donor #1 may have been the computer’s choice, but not God’s choice, and Donor #2 will “BeTheMatch”.
    I am so grateful you have and are enjoying these days with your family, and each day we will await the phone call that tells us the next step. I am with you each step of the way! Love to all! Mom

    Liked by 4 people

  8. So if Donte is on medical hold, might that say that his/her stem cells may not have been the best for you anyway? So glad door # 2 is available and will hopefully be opening soon.

    Liked by 2 people

  9. Thinking of you and Lindsey and the kids. GWL is alot of fun for everyone. Glad you had that opportunity to enjoy time with your family. A priceless gift.

    Sendings hugs to all and you are all continually in my prayers.

    Love
    Aunt Liz

    Liked by 2 people

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