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Luke Strikes Back

Luke was diagnosed with stage 4 alveolar rhabdomyosarcoma on August 19, 2016. He started treatment on August 22. We appreciate all of your support.

LATEST JOURNAL ENTRY - 2020-06-30T20:17:00Z

Catching up...

I guess I've neglected posthope since Luke's birthday on Feb 8. Thought I'd update for anyone who cares and doesn't use facebook. Posthope only allows 4 photos, so I can't share all of the pics that went along with the posts. The picture of Luke in the hospital bed is his very first chemo infusion on August 22, 2016, which should have been his first day of 8th grade. 

Bottom line - Luke is doing great! It's been 6 months since his last chemo, and he's feeling stronger than he has in 4 years (or maybe ever). Teddy's internship in Dayton was not cancelled, and he was happy to be able to go back there to work for the summer (yay engineering experience and income). Kate was finally able to start her summer job. She's an assistant manager for our local park district pools. They started by training lifeguards last week and then opened over the weekend. Their protocols seem pretty safe, and Luke was happy that he was able to sign up for a slot and swim some laps on opening day. 

Here are the lukestrikesback facebook posts in case you want to get caught up past the bottom line:

Feb 25

A couple of months ago, the social worker in the oncology clinic told us that she had submitted Luke for a grant from the Andrew Weishar Foundation. A couple of weeks ago, she told us that Luke had been selected/approved. Last Monday, we went to the hospital to meet some reps from the foundation, including Andrew’s brother Dan and his friend Bret. Andrew was diagnosed with colorectal cancer when he was a freshman at Illinois Wesleyan University. He passed away in 2012 at 21. His family and friends established Weish4Ever - The Andrew Weishar Foundation in 2013, and they have done amazing work since then to honor Andrew’s wish to pay forward the generosity that he and his family had received during his treatment. They focus on helping adolescents and young adults. Thank you, Weish4Ever for welcoming us into your family.

This quote from their letter is pretty Luke, isn't it? "We recognize you not just for your courageous battle against this disease, but more importantly for living your life with optimism, for being a beacon of hope and strength and for exemplifying what it means to live a life knowing Every Day is a Gift."

The first thing Luke wanted to do with his money was to pay it forward a little in honor of Andrew and the foundation’s mission. He decided a good place to start was with a donation to Cycle for Survival, and the timing worked out great because there was a donation match going on.

A few months ago, Luke came home from school and said, “I was accepted for the German exchange program.” Oh really? I didn’t know you had applied. “I figured you didn’t need to know unless I was accepted.” I wasn’t sure how it would work financially, but I had to say yes. This Weish4Ever grant really helps with that financial concern as well as some other financial concerns.

Teddy was in Germany just before Luke was diagnosed. I remember asking Teddy if people were playing Pokemon Go over there because Luke was really into it here. I also remember Luke’s foot hurting when he was out hunting for Pokemon . Our visit from Teddy’s exchange partner Timo is kind of a blur to me as he was here just a couple of months after Luke’s diagnosis, and Luke was inpatient for much of the time. Paul, Teddy, another exchange family and our meal train all helped to take good enough care of Timo (I think). At that point, I could barely look a couple of months ahead, let alone dream of the things Luke might be doing his junior year of high school. I know it won’t be easy for me to ship him off for 2 weeks, but I’m so grateful that he’s here to even consider it.

Mar 9 

Luke ran in his first high school track meet (ever) on Thursday. He said his time could have been better, but he was so happy he was able to run. My photography sure could have been better. How did I not notice that strap was in the way? Last year during track season, Luke was recovering from a stress fracture in his foot. This year, he was cleared from his tibial stress fracture in early January. He missed out on the more informal "winter running" but was able to ease back in once indoor track season started. Of course he wasn't idle with the stress fracture. The relatively mild winter allowed him to go on several 20+ mile bike rides. He also did some lap swimming. 

Three years ago, he was in the thick of radiation alongside chemo. His first radiation treatment was on Feb 6 and his last was on Mar 22. His foot was getting pretty raw from radiation by this point. Walking was painful, and he was using a knee scooter when he wanted to cover more ground. He had heard throughout treatment that some kids in other towns were able to get chemo at home. Flashback to some posthope posts from 2017:

{Feb 2, 2017 - While Luke was hooked up today, he made phone calls trying to get home chemo set up. Our doctors and nurses have said they'd work toward getting his next 5 day inpatient stay changed to allow him to have chemo in clinic and sleep at home, but they haven't been too encouraging about him actually getting any chemo infusions at home. He started with the Advocate Home Infusion department and was referred to a couple of other people. At one point, I heard the person on the phone say, "are you the father?" Luke said, "no, I'm the kid, but I like to take things into my own hands." She talked to me afterward and told me she was really impressed with him and is going to do her best to try to figure something out. His nurse said that if anyone can get it done, it'll be Luke.

Feb 5, 2017 - While Luke's irenotecan was going in yesterday, he got a call from his new friend Norma, the lady he had spoken to about home chemo infusions. True to her word, she had worked on it and had good news for him. She said she'd be happy to talk to Luke's nurse, so he went out into the hallway to ask a nurse to call Norma. When we left the office, the nurse was on the computer working on getting it set up. We may run into an insurance glitch, but you'd think it would be less expensive at home. We're hoping they can work it out before Luke is next due for irenotecan in 2 weeks.

Feb 18, 2017 - One of Luke's nurses called him today to let him know that his next round of irenotecan infusions will be done AT HOME! His self-advocacy and persistence paid off, and his new friend Norma and his nurse Noel came through for him. Noel spoke directly to Luke when she called today, but I could tell what news she was giving him. "Really? Wow! Thank you so much!"My favorite part of the process was from his first phone call with Norma. "Are you the dad?" "No, I'm the kid." Way to go, buddy! You rock!!Instead of going to clinic for a couple of hours M-F, we'll stay at home Tu-F and have chemo come to us. He'll still need to see the doctor on Monday, so they'll just do that one while we're there. He has 3 irenotecan weeks under his belt so far and 3 remaining on his protocol.

Mar 8, 2017 - The words great and chemo don't usually go together, but being at home for chemo today was pretty great. Luke slept pretty well last night, but was still feeling pretty crummy this morning. He didn't eat anything after lunch yesterday and didn't want anything this morning. A delivery service dropped off a box full of equipment and medication around 10:00, and Grace the nurse arrived at noon. She checked over all of the supplies, and then headed upstairs with me to meet her new patient. He didn't even have to leave his bed! Everything went very smoothly, and Luke was happy with the care. He asked a lot of questions about her experience and seemed satisfied with her answers. After Grace left, Luke called his buddy Norma to thank her for helping to get him set up. He told her he had just finished his first at home chemo and that he was so happy about it. Luke told me afterward that Norma sounded "so happy and so excited for me" and that it sounded like she got a little teary. It was so sweet of Norma to care about Luke enough to get the ball rolling. It took some time and energy from her and from the clinic nurses to get everything to work out, and Luke and I are very grateful.}

Back to the present - he never was able to convince them to let him do anything different for his 5 day inpatient chemo, but being able to get irinotecan at home was a big win. He especially enjoyed being able to get outside to walk Penny while his chemo was going in.

Luke will have his regular 3 month CT and MRI this Saturday. This is the longest his body has gone without chemo since diagnosis in August 2016, so I'm feeling some extra scanxiety for these scans.

Mar 14

Luke's in the MRI machine now, CT next.

A couple of foster kitten pics for distraction.

Stay well, everyone!

#lukestrikesback

Mar 16

Luke's MRI and CT were clear! So thankful for that news in the midst of all of the other scary, unprecedented news. His 3 month bloodwork and follow-up with the oncologist have been postponed for now.

Kate arrived home from South Carolina this morning. So happy to see her, but a little worried about what germs she and Teddy might be bringing home with them. Paul is still going to work in person. Good thing we have had a lot of practice being extra cautious about germs.

Thank you for the love and prayers. Let's all do our part to flatten the curve and to protect those who are more vulnerable. The kittens are not very good at social distancing.

Mar 22

Nichols Farm and Orchard, Luke's favorite farmers market farm is offering home delivery in the Chicago area on Tuesdays, Thursdays and Saturdays. Like so many others in this crazy world, they're trying to adjust. Most of their restaurant clients are closed or doing a small fraction of their normal business for carryout; indoor farmers markets are cancelled. They don't have a lot yet, but they'll be adding more as spring crops (greenhouse and outdoor) start producing. They are optimistically planting like nothing is going on. Luke LOVES their spinach which is available now. He's been getting their CSA since he was diagnosed, and he looks forward to his produce box every week. The boy goes through A LOT of produce.

They are Food Alliance Certified, which is less strict than Certified Organic in some ways and more strict in others.

There's a flat $12 delivery fee. If anyone wants to avoid the delivery fee, we can do a group order and do porch pickup. Let me know if you want to add on to our order.

https://www.nicholsfarm.com/store

Mar 23

This seems a little trivial now, but we've been counting down to March 22 since Luke took his last chemo pill on Dec 22. He was on the antibiotic bactrim for 3 years and 7 months, and took his last pill yesterday. Our neighbors will be thrilled to hear that he's also now allowed to pick up dog poop. I did check with the oncologist to make sure she's still ok with this timing in our current world. "Just maybe have him wear gloves or double bag and use hand sanitizer if you still have any."

April 8 

A post shared from Weish4Ever’s facebook page:

In 2016, Luke began feeling pain in his foot and ankle. Just 13 yrs old at the time, he began to research possible outcomes of his upcoming doctor visits and scans. His own analysis led to two possible reasons for the pain, one of them being cancer. Over the course of 10 days, Luke and his family went from believing that he might have plantar fasciitis to learning that he had cancer in his foot muscle, foot and bones, his spine and his bone marrow; a diagnosis of soft tissue cancer called Stage IV Alveolar Rhabdomyosarcoma.  After years of fighting, Luke remained a beacon of determination. Despite the physical hurdles the diagnosis brought, he refused to let cancer take his love of running, joined his high school's cross country team, and has even completed two half marathons! Always staying on top of his medical research and constantly uplifting everyone around him. To no surprise, his healthcare team calls him Dr. Luke! Today, Luke is a cancer SURVIVOR and we're honored to welcome him and his family into ours! Let's give Luke a big #Weish4Ever welcome

June 18

Luke was just taken back for his regular 3 month MRI. He'll have his CT right after the MRI. His last scans were on March 14, just after school shut down and just before everything else shut down. As always, I'm feeling anxious about the results, and Luke is feeling confident that all will be well.

Luke has been feeling great, and has made the most of quarantine. He's been running, biking, cooking, eating, distance visiting with friends, taking good care of our pets and foster kittens, looking for a job... He was happy to get back out for small group runs with cross country teammates this week and last, and he's been really happy with his times! He was also happy that the Evanston farmers market was able to open on schedule last month. They've been doing a great job with CDC recommendations and I feel good about letting him go. He did a great job staying on top of his remote learning, but he's really hoping for some in person school in the fall. He was supposed to have been on his German exchange trip right now. He took the cancellation in stride and is planning to get to Germany someday.

I've attached some beginning and end of school year photos from the last few years.

June 19

Very thankful to report that Luke's MRI and CT showed no evidence of disease (NED). Thank you for all of the love and prayers! It's been six months since his last chemo so I'm even more relieved than I usually am.

If you'd like some NED wine, my friend Kaylee can set you up.

 

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