January 14th

Today was the dreaded port flush. This has been able to go smoothly and gratefully did again today. Thank you to our consistent home health nurse. 

Jakoby has been working away at strength building and bracelet making. He continues to go to Physical Therapy, create in Minecraft, play & snuggle the kitten and homeschool. He has added weight training to his regimen and is getting very good at custom making smoothies. He has been able to hang out with a few of his friends and visit his Grandparents for Christmas. He and Sissy went to an empty theatre on a cold Thursday evening movie. (In case you're wondering, the Ghostbusters Afterlife is actually a decent flick!) It was fun to get out even on an icy night. Jakoby would like to continue with his creative endeavors and has updated the bracelet section of the website to include his newest ideas. There are custom styles and designs as well as keychains. He plans to eventually add more art and pet collars. He'd be thrilled to take on any new orders.

 

Continued wellness wishes being sent off to each and everyone of you in all the corners of the world. Keep lifting him up in prayer and healing light as the journey to the next scans continues day by day. We appreciate YOU!

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December 14th

We arrived in Sioux Falls for scheduled scans. The day began very early and without food. (NPO for scans) The first snafu was after the hour to integrate the medicine for the PET/CT scan and when J was on the table ready to go into the tube. The tech realized the wrong tubing was used and that they couldn't do the contrast without risk. There was a bit of a melt down after being so brave and flexible but when we all put our heads together a solution was found that didn't involve him having to be re-accessed. This is when they put the needle in his chest at the port site which causes him quite a bit of distress. After that we waited around having lunch and visiting with our Physical Therapist buddy, Dan. When we finally got to the appointment we were told that there were some spots that showed activity and a further plan was in the development stages. We are quite thankful for our care team making things happen quickly and were able to stay the rest of the week in limbo at the Ronald McDonald house. There was a biopsy surgery scheduled for 3 days later. The surgery was done with IR to be especially precise and successful tissue samples were gathered. Another catch, the lung was bumped so he must stay in recovery and be x-rayed to assure that there will not be a lung collapse. This was a very elongated 2 hours for us since he had been through the lung collapse and chest tube surgery before. Emotions were high. Praise be, the lung was steady and we were off to normal recovery. He was sent home. Jakoby felt better quite quickly from this procedure except his hoarse voice from the breathing tube. Biopsy results were expected within 10 days but we were lucky enough to get results in 3 days. The results were the best gift of the holiday season and showed that it was scar tissue still settling. We will now know this for the next time we have scans. We hope your families are experiencing as much joy & gratitude as you can fit in to the end of the year.

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November 20th

Gratitude Report. We are in recovery mode and keeping busy with Physical Therapy, school, sissy time and a new comfort kitten.

Jakoby finished the chemotherapy regimen. His scans showed him in remission. He was incredibly weak and sick so the ringing of the bell was very lack luster. We will return for more scans at Children's hospital at a TBD time in December. His body had a very intense time recovering from all the challenging meds. It took 3 transfusions & lots of patience to gain strength but eventually the Blood Count numbers finally approached 13 yro boy norm and he has been able to keep away from weekly pokes. He has finally been able to hang out with some buddies and the laughter witnessed was music to my ears. Walking is coming back with hard work. He got on a bike and a skateboard for the first time in a year and the confidence & smiles that occurred were remarkable. We make several treks a week to go to PT at a therapy pool where working on balance, muscle building, swinging a bat and hip stabilization are key goals. As always, his determination, attitude and hugs keep me in awe of God's daily presence in Earthly forms. He completed his math midterm and we are seeing progress that "Hair by Thanksgiving" is actually going to happen. Avery and her brother enjoy meals, movies and working on music edits together. J continues to explore his love of art adding some new alcohol based markers to his collection and practicing new blending skills. He is still always up for hanging out with his friends all over the USA playing minecraft! Avery added a "comfort kitty" to the family with little Adeya joining us and just as we discovered her name means "Gift from God" she has been a total blessing. She snuggles and follows Jakoby wherever he goes. She thinks her doggie brother is the coolest and lets him kiss her & plays a little rough but snuggles right up for naps on him afterwards. It is seriously the cutest relationship I have witnessed for a dog n cat! 

We absolutely are full of Thanks~giving for each and everyone of you and your caring ways and checking in. Please continue to hold us in prayer as we approach the next steps and holidays. We will do the same for each of you, wishing your families health, healing & happiness in abundance. xoxo

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Tuesday, August 10th

Hello from Sioux Falls Children's Hospital. We made it to treatment after a week delay. Jakoby was doing pretty well but over the last weekend his blood counts hit bottom. He was having a hard time walking to the bathroom without needing a spotter and getting lightheaded and fighting off fever. Luckily, the needed transfusion happened last Monday and went as smoothly as it can from Rapid City. (Meaning it takes a full day for anything to happen locally but, at least it did and went as planned.) He was then able to quickly recover back to his good spirits and smiles. We are awaiting access and the chemo meds to begin this afternoon. He is passing the time with his good friend in Santa Barbara playing Minecraft. I am so thankful for technology to connect him with friends and keep his mind active. For all of you who have allowed your children "extra screen time" to play with him- my heart is full of gratitude! Hoping this treatment goes smoothly and the long days pass by without any surprises. 

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FRIDAY, JULY 30th

Hi, Team. Summer has been flying by and the treatments are continuing at the necessary pace. Jakoby had to overcome many obstacles when we got released from Mayo and the Proton beam treatments. We came back to Rapid City with little difficulty but once he settled in the burn and side-effects came on heavy. We used many techniques to stay comfortable and get necessary nutrients. His body had what looked like a horrible sunburn on his back and moist treatments were done several times a day. He also suffered from Esophagitis and eating and drinking were extremely painful and difficult to stay hydrated. Working with 3 different teams of Doctors, all many hours away, was quite the chore but we managed to provide all the recovery care. As of Today, his back has healed so well and we are thankful for his brave attitude to get through this rough time. We have been able to stay close to the schedule for the final chemo consolidation and there are 3 more trips to Sioux Falls left. The next one should happen middle of next week and will be a 5 days inpatient one. One thing is certain, we are grateful to be back with Sanford Children's Hospital for their consistency, routine and excellent staff which ease the hardships of being admitted to the hospital much more then anywhere else we have been. He is pretty anxious to get back to being active and build up strength but hesitant to do too much before chemo is over since he knows it is just going to take him back down each time. We love getting more routine in when we're back West River and seeing sister, family & of course, his pupper! He discovered a hoover board attachment to create a lil go-cart for himself and this has been fun and allowed him to go on walks around the neighborhood and zoom around at his own pace. The smiles when he spins around and goes fast are pretty priceless. Please continue the thoughts and prayers for his body to make a full recovery and total healing to be discovered. Slowing down has not been easy but every moment we get to cook food together, binge on Stranger Things & others and do art together are special in their own way. Here's to hoping each of you are finding some peaceful, perfect adventures for summer. Love big. Love often. 

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Thursday June 10th

Well, I started the update on May 30th but here I am slowly finishing up. It is a struggle to decide what to share. The Proton Beam treatments are going as planned. He has a routine. We go every day M-F at the designated time, wait to be called, then he heads back to the concrete room, practices savasana for the full time(no itching or moving!) and listens to his audio book. He's been doing the adventure WY Park Ranger series of Joe Pickett by C.J. Box. Since we have around 12 treatments left, the side effects are starting to kick his butt. His esophagus is sore and this makes eating and drinking no fun. We are working on some new remedies and hoping he gets all the goals over the next few days. A blood transfusion and hydration therapy have made a big difference the last 2 days and we are seeing him more silly and active. He is finally ready to go fishing again after a long week of recovery from the additional chemo. I just noticed the first redness on his little back last night and I pray we can keep this from getting sore with the cream we have. Mayo is a giant business and they schedule you non-stop. Another reason it is harder to get updates and replies done. We are enjoying the Hot weather here in Rochester. It is downright tropical. There are many green spaces, birds and lakes. (prettier then I had thought but I think my opinion would change in the winter!) We stay at a suite not too far from the hospital and have been navigating the new area fairly well. We are becoming pretty swift at getting to Trader Joes, the hospital, Mayo buildings, Barnes and Noble & Target & a few of the lakes. Sissy is still with her Auntie and Grandma & Grandpa & pup, Sukha in Custer. We are counting down the days to reunite with her. She has several music gigs booked and is enjoying working at Skogen Kitchen(amazing fine dining in Custer if you happen to get the chance!) She also is happy for the warm and went on a backpack adventure, hikes & dipped into the lake. It is hard to express how difficult it is to simply be the support person, away from much needed hugs and support. You just keep on going without thinking much of it until one day you're frazzled and realize you're needing love too. Life will keep moving in this sacred circle and through prayer, devotion and daily acts of kindness all will be well as the future unfolds to something bright & fresh. Looking forward to the Black Hills welcoming us back at the end of June. There will still be a few rounds of chemotherapy to be finished in Sioux Falls but, we are planning to commute for those. Many well wishes to all of you and I hope summer fills you with delight. xoxo

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For anyone interested the first link is his Radiation Dr. and the other is an informative Ted Talk on the proton beam

Dr. Nadia Laack  https://www.youtube.com/watch?v=qRHwWE7wrQ4

The mighty proton https://www.youtube.com/watch?v=86owjqOQYZI

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Monday, May 3rd

It has taken some time to work the pieces together for an actual update.

1) We are surrounded with so much love and giving that the benefit concert and silent auction were not only a total success but an uplifting, enjoyable evening full of art & incredible humans(so I’ve been told. Wink wink). Thank you all so much. I bow to each of you with honor and gratitude for the light in you reflected back to all.

2) Chemo is continuing and it has been decided to bypass surgery and do proton radiation treatments at the Mayo clinic in Rochester, MN. We will leave soon. Which has been harder to shift then anticipated because we just arrived in Summerset and it felt good to be back. Many Seraphim have been working with us and continuing to lift up the faith and knowingness in signs we are being propelled along the proper path to heal Jakoby. He continues to plow through obstacles, expanding his spiritual journey, loving family big & enhancing his art & mlb xbox skills. And 13 looks good on him!

3) Many of you were hoping to offer support in Denver. We are so thankful. Now we will be somewhere new. If you have any contacts of local advice for MN please feel free to reach out. When we have more information regarding things and specific needs, we will pass it on to anyone who would like to support the next phase directly. Our mail will be on hold so it is best to send an email, message or call for specific details as to mail. Lindsay and Monte & Kathy are great at getting stuff to us as well.   

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Tuesday, April 7th

The days are chugging along. Spring has arrived in Sioux Falls and we have observed 88 degree sunshine, rain, lots of bird chirps & green buds on trees. Jakoby is preparing for the final round of chemo before his surgery tentatively scheduled the 14th. We still have yet to learn many details about this procedure, which will occur in Denver, and we will share more as we know. The last few treatments have been wearing him out pretty well and he spends lots of time resting, doing physical therapy, thinking of good foods to eat, playing Minecraft with a few friends (so grateful for this!), giving us drawing challenges & overcoming fevers & nausea. Sarah is getting to be a pro at hospital hacks (bring the Nintendo switch, markers & art & own coffee-even warmed the next day is better then that family room machine, lol. Having pillow cases and bedding helps for comfort, pay attention to everything, a food basket full of supplies works well including Jakoby's favorite fresh ginger & lemon water & bring your own essential oil soap!) Avery got to celebrate her & Josh's birthday here with us and she added more sunshine to our day! We instantly missed her presence when she went back to work. (**FYI~check out Skogen in Custer for excellence in menu & dining and during the month of April, if you order truffles, a portion will go to team Jakoby. Thanks you, Eliza & Joseph**) Averianna will be performing for the benefit and silent auction at the Beacon. Go listen to her if you can. The 3 of us sure wish we could be there in person. She's so captivating & talented. Finally, we are trying to get back to any messages & gifts sent but, most days take a real "go with the flow" attitude and plans can change quickly so if you haven't heard from us please know it may just be on the to do list. We appreciate all the little care & details immensely. Keep the good vibes coming!

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TUESDAY, March 9th

We continue to ride the roller coaster of treatment highs and lows. There are some positive signs such as his good attitude and cracking jokes, sleeping well, even on his back and side, and the bit of walking he does on his own. The wobbles come and go and balance work includes throwing a baseball and learning yo yo tricks. We have to continue to closely monitor any fevers or changes and be ready for blood transfusions when the numbers drop. This can come on very quickly so relaxing is challenging but possible. We miss sissy who has been working on her school and music and staying with her Auntie, but are so thrilled with her recent online concert. She brightens our day with her calls. Jakoby has really gotten into doodling and is fun to watch create his mini masterpieces. He continues to love the Nintendo switch. The weather gifted us with some warm sunshine, finally, and any time we can sit outside for a few rays of recharging light, we do. Specific prayers include keeping his body strong to fight any infections so the chemo can continue as planned (3 more rounds to go before surgery) We'd also love to keep seeing the signs of the tumor shrinking-such as his walking and sleeping better. And please no more all nighters in the ER.

Sending the spring fever wishes out to all our team. 

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SUNDAY, February 28th

Goodbye to February. Seems like I missed this month. Oye! Treatment continued with the 6 day haul. All went as planned with the last couple days taking a good toll on his little body. Once we came back to the house, sleep was appreciated. During chemo we could be up in the night 12x! One thing that is always monitored is the blood count and when we went in on Friday, it was low. As is common. Unfortunately, this means we needed the necessary precautionary care back in the hospital for the weekend to protect him from fevers and infection. This flexibility is difficult but necessary to keep him safe. We are hoping to stay as close to the set start date for the next round as possible. The highs and lows are very wearing on the parents' heartstrings. Jakoby is in good spirits though and working on bracelets, coloring, uno, eating, and of course video games and watching silly youtube videos! He is working on getting around more and more without his walker and building strength back in his muscles. His physical therapist is great and had him work his way around the bases and do obstacles at each one. He, of course, nailed it!  He continues to amaze us with his crooked smiles, silly antics and giggles. I could kiss every freckle on his face but he certainly won't allow that, so we'll settle on a few every hour or so!

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WEDNESDAY - February 10th

Jakoby had his first chemo sessions. He did well except a nerve racking allergic reaction to an anti-nausea medicine. Luckily, it was halted quickly. We amazingly found a place to temporarily stay in Sioux Falls close to his team at just the right timing. We were looking forward to finally having some family time but his body had already been through so much and he got a common bacteria infection that really knocked him down. We were right back in the hospital for another week.

 

Antibiotics are now working. we came "home" yesterday (Monday) and the next scheduled chemotherapy will begin the 18th. Until then, we will enjoy time together with sister, our dog Sukha and some home cooked meals in between daily antibiotic infusions. Hoping this release will be uneventful and we can get some much needed rest, get caught up on messages, work & thank you notes & precious calm moments spent listening to a brother and sister play video games, giggle, bake & do legos. Today we are thankful for the sparkle back in his eyes, the freckle face smiles and some of the best movement around the home we have seen for over a month. Keep cheering, praying and surrounding him in healing light and guidance. We love you all.

 

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TUESDAY - January 26th, 2021

On January 9th, 2021, Jakoby's parents took him into urgent care in Rapid City, SD - he had been having shoulder pain and it was time to figure out if there was a pulled muscle, growing pains, or what? To the shock of everyone, an x-ray revealed more. He was life-flighted to Sanford Children's Hospital in Sioux Falls immediately. After more images and tests, it was confirmed that his left lung had been compressed from the pressure of fluid build-up. The fluid was being produced by a mass. Further imaging showed the location of this mass to be pushing into the spinal column. As even the doctors were baffled, reaching a set diagnosis and plan took almost two weeks of waiting, tests, and procedures to drain fluid from the lung and keep Jakoby strong.  
 

 

Pathology began sending labs around to other oncology teams. Finally, they were able to name the tumor; Ewing Sarcoma.

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A treatment plan has begun. The tumor involves delicate nerves, tissue and spine region around T5 & T6. Action to shrink and kill further growth of the tumor was needed immediately. Jakoby began Chemotherapy on Monday, January 25th. He is set to continue these treatments at Sanford Children's -a week on (receiving treatments and staying at the hospital) and then a week off (staying near the hospital - with an overflowing amount of gratitude for the generous & kind family who are currently offering the use of their home.) Flexibility will be needed as we monitor the effectiveness. There will also be a surgery for removal. This will need to happen at another hospital with a specialized surgeon when the time is right.
We ask for prayers & meditations for success in killing this tumor and for the knowledge, wisdom & skill of his team of doctors, surgeons & nurses. We ask for complete healing of the cells in his body and the strength, comfort, and an encompassing light of love & healing to surround Jakoby, his Mom, Dad & Sister & extended family during this unbelievable process. His little body has already endured so much.