When the kids were here the other day, they were playing with one of the port hole doors where some bins are stored (see pic of Tucker below). While playing, Tucker shut Sydney’s finger in the door which led to many tears. Today the kids stopped by again and Tucker played with the door once more. Of course Sydney wanted to remind everyone that her finger still hurt so she showed it to us. I’ve been waiting for this day for quite some time. I didn’t realize she hurt “that” finger, so I was a bit unprepared, but the moment was still as good as I imagined. She raised her hand and then raised her middle finger to show me her boo-boo. I love the innocence of a child. All she wants to do is have her wittle fingwer kissed and I hope it’s a long time before she learns the meaning of a raised middle finger. Now that I think of it, I’ll probably need to keep her away from Brian and Corry.
Today Camp UMAC kicks off. Camp UMAC is when the kids go to Uncle Mark’s and Aunt Chelle’s for a few days each summer. The kids love it and mommy and daddy like the break. Camp UMAC has been scheduled for quite some time and didn’t take into account Daddy’s cancer schedule. Granted, the timing really couldn’t be better. I’ll be discharged on Saturday, and the kids will be back on Sunday. I’m really not away from them for much longer than I would have been and the time away allows Lindsey to get things ready for my return and for me to have a bit of time to adapt to life back home with an IV Pump. The kids stopped by today on the way to Camp UMAC. Sydney didn’t want to come into my room because that was just delaying her trip to camp. Eventually she did come in, and we obviously got the pleasure of seeing her finger boo-boo. After 30 minutes or so, I got 3 sets of hugs and kisses goodbye and the kids headed out to Camp. Have fund kids! And if you want to stay for an extra session of camp, that is fine with us 🙂
Two More Sleeps
It’s hard to explain time to the kids. Whenever they know something is going to happen, they always think it will happen that very day. As we get closer to the date, we’ve taken to explaining the timing of things in terms of how many more times they need to go to bed and wake up. It also ends up being an incentive to go to sleep, which is a bonus. I will be discharged on Saturday, so I only have 2 more sleeps in the hospital. I can see the light at the end of the tunnel (which is hopefully different that the big white light you are supposed to walk towards).
No, I’m not wearing adult diapers. But blinatumomab is considered a Class A hazardous drug. Actually, all cytoxic agents are considered class A. Blinatumomab is excreted through my pooper and my penis. When the toilet is flushed, if it is not covered, there is a chance that particles can float into the air (pretty picture, right). To combat this, I have a pad that covers the toilet. When I take care of business, I lift up the pad, um, take care of the business, and then put the pad back down before I flush. Now flushing is quite a reflexive thing after you stand up. I’ve found that it is best to put the pooper pad over the handle of the toilet, just as a reminder to not contaminate my bathroom (at least not with particles of my meds). The method works pretty well. Once I’m home, I’ll just close the lid before flushing. Hopefully I remember the lid is closed in the middle of the night.
New Dose, No Problems
This morning around 9:45, I received my increased dose of Blinatumomab. I’ve been receiving it for around 10 hours now and I haven’t had any issues. The Clinical Nurse Specialist reached out to one of the trial sites and they said that most people did not have new or additional side effects with the increased dose. That’s great, as it gives me a little bit of hope that I’ll feel ok while at home. There is still a risk of neuro toxicities and other complications, but those occurred in a small amount of people, so hopefully I’ll be ok. Then again, Leukemia only occurs in a small amount of people. Hmmm…..
And the Powerball Numbers Are:
7/23: WBC- 1.2, Hemoglobin- 7.4, Platelets 60
So my whites have been the same the past 3 days. This is good, as it means I’m not neutropenic and I don’t have to worry about staying in the hospital if I get a fever. My hemoglobin ticked up, which is somewhat unexpected. Of course I’m hopeful it keeps trending in that direction, but time will tell. Something that is trending in the right direction are my platelets. I’ve also noticed they are increasing in multiples of 5. My OCD kind of expects that now. Dear IUH Lab, please only report my platelets in multiples of 5 now. Feel free to round up or down, depending on how you are feeling.
A Duck Dynasty Prayer
Thank you God that I only have 2 more sleeps in the hospital. Thank you that I am tolerating the increased dose well. Thank you that I will be at home with my family. Every day is precious with them. With or without cancer, every day is precious. May that be something that more and more people realize. That more and more people take advantage of every single day. I most certainly thank you for another day.
Thank You For Another Day 
Good to hear the increased dose is being tolerated. Our Bible Study group prayed for you and your medical team this afternoon.
LikeLiked by 3 people
Seriously the top of this page is awesome, cracked me up! Oh and the no side effects thing is great too:)
LikeLiked by 4 people
Love the reference to Brian & Corry. I’ll make sure they get the message. Blessed to hear the report. Still praying.
LikeLiked by 3 people
Can’t wait to welcome the kids to Camp pool time!
LikeLiked by 4 people
Praising God for His perfect timing. It is great that the kids get to go to UMAC during the time when you and Lindsey will be making the adjustments for you to come home. God is good. Also praising Him for the way your body is tolerating the treatment. Mostly, praising God that He continues to give you an amazing attitude and amazing strength and courage. Continuing to pray!!!
LikeLiked by 3 people
Rob
So thankful no side effects with your increased dosage. Also thrilled for you to be headed home soon. Our prayers continue! You are so right….every day is precious!
LikeLiked by 2 people
Glad to hear that you’re going home soon. Yes, apparently Corry and I do get boo-boo’s on our fingers frequently. Best wishes for a speedy recovery, my friend. Blessings
LikeLiked by 2 people
God has blessed you richly. Good Docs, good treatment, good family all the way around. You can’t ask for much more. Keep up the GOOD work. 🙂
PS noticed you had a west facing room. Allen loved those rooms versus the east looking out on gravel and sides of other buildings.
LikeLiked by 2 people
It sure is fun to have your kids here! The girls walked in and were right at home. The first thing Natalie said was, “Oh your outside (backyard) is so nice Aunt Chelle and I love those birds with their wings like that” (yellow finches on the feeder). Tucker couldn’t get enough of the turtle once I convinced him he doesn’t bite (because we are not allowed to touch him and he can’t get out of his tank by himself). Sydney was extremely excited about getting to sleep in a pink sleeping bag in Karstens room. She requested a fan and thankfully I had one! Your kids are truly getting the camp experience, sleeping bags (although Tucker slept in a twin bed – it’s his first year so we upgraded him:-), a turtle, birds, a pond with fish to feed; we even caught fire flies and put them in a jar. Karsten thought of the idea to use them as a night light at bedtime, but we didn’t catch enough to keep the room from being too dark to not be scary;-) Tomorrow we will do some swimming and crafts and pick Braden up and hear about his week long camp experience:-) We might even make s’mores for dessert:-) I’m thankful that you will home soon and that the timing of camp UMAC wound up being extra helpful this year. It truly is a God-incidence considering we picked the dates in March! Love you
LikeLiked by 4 people
Since Blinatumomab in “body mist” is such a concern, what do you do about burping? And do you try to blink more slowly? Curious people want to know.
Love, Uncle Claude
LikeLiked by 3 people
This whole post is wonderful news! Thank you, God, for everything you have been doing for the Culross family. 2 more sleeps…..
LikeLiked by 2 people
Good morning, Robbie. Great post. Syd, you go, girl! She is only expressing what the rest of us think about cancer. So glad to hear that you are feeling better and the treatment is going well. Best news was hearing that you will be going home this weekend. Yay! Thought I’d tell you a little story. I got home last night and had a pizza delivered. The deliveryman was a rather interesting gentleman – Egyptian, he said. When he gave me the pizza, he asked me to pray for peace. He said that his parents always sat the children down for 20 minutes every day to pray for peace. So I went inside and prayed for peace and for your continued strength to KICK CANCER’S ASS, all while I enjoyed my Domino’s delivery. I really am a good multi-tasker. 🙂 Now get the hell out of that hospital and have a great weekend!
LikeLiked by 3 people
Not only do I enjoy Reading Rob, but I love to read the great comments. What a wonderful group of prayer warriors you have, and such interesting writers! Most of all, what a wonderful God we have who has made this new medicine possible for you. Thank you Lord! Love you Rob!!
LikeLiked by 2 people
Thank you for your updates Rob. Your attitude is amazing. I happen to agree with Sydney about cancer, I believe I have a shirt that says as much! :). You are in my thoughts always. I hope you continue to feel limited side effects and constant love and support! Hugs!
LikeLiked by 1 person