Caleb's Epic Adventure

I realize it's been quite a while since we last updated anyone on what has been going on. We want to share that Caleb is no longer in the clinical trial that he was participating with at Children's National. The results were mixed, with some tumor progression so he and his Dr's felt it was better to move on from that one. It has been challenging, but we're grateful for the incredible support from our medical team. They're working tirelessly to explore other trial options and treatments for him.

Your prayers, support, and love mean the world to us. Please continue to keep us in your thoughts as we look for the option that he is meant to pursue. Thank you all for being there for us every step of the way!

Well we had a small set back, but don't worry everything is fine now. Caleb ended up having treatment pushed back by a week because his counts weren't quite right and his liver enzymes were up too high. Now we're back on track and he's feeling much better post chemo.

We haven't posted any updates because, well, there hasn't been anything to update about really. There's been summer vacations and the family all (and I mean ALL) getting covid and VBS and enjoying the warm months of the year.

Caleb's treatment continues to go well with a predictable cycle of not feeling super for a couple of days which isn't "great" but also comparatively it's pretty great. His hair has stayed put, he doesn't seem to have any major aversions to food, he's got a lot of energy for the most part. God closed the door on that first trial so he could find his way into this one. He goes in for another round tomorrow. We're praying his blood counts stay in normal ranges so that he can proceed as planned.

Enjoy some photos of Caleb with his favorite nephew from the last couple weeks. Jesse is starting to process Caleb's amputation now that he's getting older. It's so sweet to watch his mind work.

The results from yesterdays scans came back positive, Caleb will continue in the trial at NIH. His body is responding to this treatment.

I don't think I have the words to express the overwhelming emotions this news brings. I am so grateful that Jesus is continuing to show us how His timing and plan is so much greater.

This is another big week for Caleb. Thursday is scan day to see how the current treatment is working. There's some stress for all of us since this was what kicked him from the last trial. Please pray for positive results in the scans and more importantly for all of us to feel Jesus's peace no matter the circumstance. He's truly in control.

Over the weekend Caleb and Cecilia attended Cecilia's best friends wedding where she was the maid of honor! Look how handsome and beautiful they are. ❤️

After a minor set back Caleb officially started treatment last Monday and had a really fun week of exhaustion and nausea and being asked "so how many times did you puke today?" The nice part of this treatment is that they only have to commute to NIH instead of all the way into DC.

By the end of the week he was starting to tolerate food again in small doses and even did some socializing by coming over to our house for a bonfire (our being Emily and Forrest). We celebrated him and Kim's collective birthdays at the park on Sunday afternoon which was a nice kick off to this week.

Monday they did some blood work to check hemoglobin to see if he needed a transfusion and were pleased to find that it was within a good range! Now for some peace and rest for a couple weeks before heading in to round two.

Caleb starts his new trial today. He'll have a schedule of Tuesday, Wednesday, Friday every 21 days. At least he's only traveling to NIH instead of all the way into Children's this time. Praying that this one is effective in battling the cancer.

Caleb also had a birthday at the end of March! Here's to being a quarter of a century old.

And so we find another way. The tumors didn't get the memo that this trial treatment was met to shrink them and instead bulked up 💪🏼. So I guess that's the bummer news. The better news is that there are other trials that he can apply for and hopefully start next week.

I recently listened to a sermon about prayer. That the purpose isn't to change God's mind about how things should go, but instead to draw us closer to Him so that we can at minimum have peace that He's in control. As someone who doesn't like surprises and generally needs to know what's going on this has been hard. But knowing He's in control has brought a lot of peace. This door closed, so now we go through the next one. There's a bigger plan here, we just cant see it yet. Please continue to pray for us as we trust God to continue to lead Caleb and his medicl team.

Photos are from when we went to the Renn Fest back in September. Fun fact, Caleb built his own peg leg and affixed the old sole of his right climbing shoe to the bottom so he can climb the wall at the Faire. So much talent.

- Emily ❤️

Well Caleb had his second round of treatment yesterday. Thanks to a lot of pedialyte to keep him ultra hydrated he seems to be feeling slightly better this time around (figures crossed) albeit still a little queasy.

Caleb takes being an uncle seriously and was recently seen trying to teach Jesse to do a fist bump.

Well our boy started treatment this week. Tuesday they left at 6:30am and didn't get home until around 10pm. It was a long day fill mostly with just waiting. He'll go back for his next treatment on Valentines (so romantic).

Speaking of romance, meet Cecilia! (You can see her in the one photo with a Caleb) She's Caleb's girlfriend and an all around amazing human. As a family we are so grateful for the love and support she shows Caleb and her willingness to embrace the changes and roll with the punches. She's already been a big part of our family for a year now. Pray for them both as they now navigate continuing to love each other well in the middle of this turbulent shift in life.

Caleb has been nauseous from this treatment. He's very accustom to throwing up these days, but it's still hard for all of us to see. Peppermint essential oils and sea sickness bands are back in rotation, but when I talked to him on Wednesday he said it wasn't quite as bad at chemo nausea. We're praying that as he goes through more rounds his body will adapt and not allow to nausea to continue to build.

I have typed and erased so many times trying to find the right way to make this post and I realized that there will never be a right way. This kind of post isn't normal, or exciting, or one anyone wants to write or read. (lucky us, right?)

The cancer is really outstaying our patience for it, since it wasn't welcomed to begin with. After several scans and meetings with doctors and discussion of options Caleb will be entering a study at the end of the month at Children's National to continue treatment on the lesions in his lungs.

The good news? We made a new shirt 👀 so you can continue to support Caleb on this path and look good while doing it. https://www.bonfire.com/steadfast-4/

We are continuously thankful and humbled by the love and support that Caleb and our family has received over the years. Please continue to pray for Caleb, the medical team, and the family as we keep moving forward the best we can. Pray for strength, peace, and assurance.

Steadfast | Bonfire His steadfast love sustains us.... Caleb's cancer has really started to out-stay it's welcome. With the reality of going back into treatment looming we figured let's ...

Hello everyone, thank you so much for your continued prayers. Caleb's last scans showed continuing progress and stability. He is on track to be scanned again in another 3 months. He will meet with his Dr this next week just to follow up but at this point everything is looking good. We are so grateful for your support!

Hi Everyone,

I wanted to get to this sooner but what a crazy week we had last week. Caleb continued to have tooth pain last Monday and by the afternoon he was sitting in the oral surgeons chair having a tooth removed due to it cracking at the root. Fortunately, this has ultimately made it feel much better but it took a bit to get there. I (Kim) had a bout with the stomach flu that came on very suddenly Monday night so we were both pretty down and out.

Tuesday was Caleb's birthday and we got the best gift. His Dr. gave us GREAT news that his scans came back showing that everything looks good. We are seeing no changes from the previous scans. They believe that everything they do see is calcified remains from the radiation he has received. We are continuing all we have learned at Eden Valley since we know that this is such a long road and our Adventure is far from over.

Last week was such a reminder that we just don't know what wonderful works can be already happening for us right around the corner. God is good and we know He has a plan and purpose in all of this!! Thank you all so much for your prayers and continued support.

I just wanted to give you all an update. Caleb's scans are rescheduled for Thursday at 10am. Please pray that this time he can get it over and done with and peace in the process. Thank you so so much!

Thank you all for your prayers today. Caleb was on his way to scans when his Dr called to tell him insurance hadn't approved it so we had to cancel. The oncologist is working on this with insurance and we're hoping to try again next week. I guess this gives us an extra week to do what we can with what we learned at Eden Valley. I will keep you all posted about the new scan date.

Hello Everyone,

I wanted to take a moment to let you know that Caleb will be having scans tomorrow at 10am and ask for prayer.
Pray for peace for us as he goes into his appointment. Pray that the Lord is doing a mighty work in riding his body of the cancer and most important pray for His will to be done in this. Thank you all so much for the support and prayers you have shown us throughout the years as Caleb has continued to battle against this horrible disease. We can't express enough how much it means and how truly grateful we are for each and every one of you! ❤

Caleb and I are back from Eden Valley Institute. We learned so many wonderful things from them to help Caleb on his road to healing. We have had quite the challenge the past week incorporating all of it into our daily lives here at home but it's going well. The people we met in the program and the staff they have were all just amazing. We feel like we have a new family! If anyone has ANY health issues that they would like to find some natural support for I would highly recommend checking them out. Thank you all for your continued support.

Caleb starts his radiation to the lungs today. He will do treatments Monday-Friday for the next 2 weeks. His Drs are hopeful that this will take care of what remains of the nodules in his lungs. If not we may need to remove them surgically so please pray that this works and that we will finally be done. Thank you all so much for continuing to lift caleb and our family up in your prayers. We appreciate it more then I could possibly explain. ❣

Friday was hopefully Caleb's last day of chemo. He will start whole lung radiation in about 2 or 3 weeks. The radiation treatment will take about another 2 weeks after that and we will see after that how the lungs have responded to all the treatment he has received. He is of course thankful for being done at this time and we are praying the Lord will continue to be with him.

Caleb finished the week with getting platelets twice and having one transfusion. We are also working on his appt to set him up for whole lung radiation. He will probably have 2 more rounds of chemo, be scanned again and proceed to radiation. Thank you all for your continued prayers. We are trusting that we are on the path that God is leading us on. 🙏

Caleb finished chemo on Friday and so far no transfusions. He will need to go again to have counts tomorrow along with being typed and screened just in case. The likelihood is he will need something probably by Friday. Thank you all who have been donating for the brave box at children's. I saw a little girl last week that just really wanted a barbie and they didn't have that much so these donations will be so appreciated. Thank you all for your continued support.

Caleb has had a week of ups & downs. He started the week with having to get more platelets and he had scans today. Please pray for positive results from that. We always have a sense of scanxiety from those so we will be glad to hear the results and move on. However, while he was receiving his platelets he was told that the brave box the children use to choose something from was completely empty and they didn’t have any donations coming in. The brave box is used to bring a small amount of happiness while being poked & prodded all the time. He is now working with the Young Adults of the Frederick Adventist Church to replenish the toys for these children during “Pediatric Cancer Awareness Month”. If you would like to help him contribute to Children’s National Outpatient brave box we have created an Amazon wish list with some ideas. https://www.amazon.com/hz/wishlist/ls/2X7RNWIB1049O?ref_=wl_share
You don’t have to buy anything off of this list however, we do need it to be new items since these children are immune compromised. You can send any donations of toys to Frederick Adventist Church, 6437 Jefferson Pike, Frederick MD, 21703. Whatever you decide to do please send up a prayer for all the children who are fighting pediatric cancer. Thank you all.

Check out my list on Amazon

Happy Labor day everyone! I hope everyone gets the opportunity to do something fun with your families today! Caleb has had a bit of a rocky weekend but we have made it through. Please continue to keep him in your prayers. This road is long and the battle is tiring. We have no plan this time around which makes it harder. The original diagnosis and other reoccurrence we had a schedule of how many rounds we would be facing in our chemo schedule but we are now dealing with metastatic cancer so we are fighting until there is nothing left to fight or we can't win the fight with the tools we are trying and then we simply change out our "toolbox" so it's exhausting at times. We are thankful for a God who will see us through and for friends & family that continue to be there for us in prayer and positive energy. I can't tell you how much both are needed 😄 Thank you all.

Caleb was able to have his root canal yesterday and we are a go for chemo to start on Monday. Please pray for a better then average week for him!

We made it through the weekend with no fevers and didn't have to make any trips to the hospital :) However, he did need platelets on Friday and yesterday due to nose bleeds that we had a hard time stopping. He was also having some pain in one of his teeth and unfortunately we found out today he needs a root canal. Chemotherapy is very hard on teeth, especially having gone through it 3x now. We are working to get that procedure set up early next week as long as his blood work comes back ok and the Dr. clears him to be able to handle it. He will have chemo delayed while we work on this but hopefully it will only be by 1 week. Please continue to pray as we work through all these additional hurdles.

Caleb had to have platelets on Wednesday and he goes to check his counts again today to make sure he doesn't need a transfusion. My bags are packed in case we need to run to the hospital for a fever but he says he still feels much better at this point then last time. We are hoping we will get to avoid that after all!

Caleb had his last chemo treatment for this round last Friday. This was the first round where he had hydration for the entire week and over all it went much better. He still had some issues with nausea but was able to eat more and says he feels muchbetter now. His comment was "Water, who knew" lol! Fingers crossed and lots of prayerthat we can avoid our past hospital runs to the ER neutropenia and weekend stays. This has been our ritual a week after chemo since we started this chemo regimen. Thanks again for all of your prayers and words of encouragement.

Vacation is definitely over and we have begun another week of chemo. I'm posting some of my favorite vacation pics that I didn't post before. Vacation just goes by so quickly! 🤣