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Prayers for Nephew

September 27, 2020
Journal Entry by Patrick Schaller — 5 hours ago
What a weekend! We were very blessed with Jedi’s health and the weather that we were able to do a ton!
On Saturday, Granny rented a two-seater bike for Jedi and we went on an eight mile family bike ride into Onalaska.
It made me laugh that on two separate occasions someone tried “tattling” on Jedi for not peddling. They didn’t mean anything by it but it was a great reminder that we never know what someone is going through when we just “meet them on the street.” Not that we can never joke or tease anyone but that we should always do so in kindness, love, and understanding.
Jedi did really well with the bike ride and then we played in the park for awhile. A massive game of Spike Ball while Grandpa got everyone ice cream from Culvers. Then some brother craziness on the spiny toy, that made Elijah sick, before we headed back home.
For the return ride Jedi wanted to get home quickly so he asked if his big brother Noah could pedal really fast!
As an aside, Elijah had a puking mishap in grandpa’s van, that was hilarious, on the way home, but otherwise it all went smoothly.
On Sunday, Dianna had called Ferguson Orchard about us coming out early and they graciously agreed. They not only let Jedi in an hour early, to protect him from the crowds, but they were also very kind and thoughtful about the whole outing. Jedi has gone to that orchard every year and he really wanted to keep his streak alive. We were able to race in the peddle carts, sift for gold, bounce on the “bounce-pad”, see the haunted barn, walk the corn maze and take a wagon ride.
It was an awesome morning and a fantastic weekend.
Now for the week ahead.
Jedi starts his last round of Chemo, in La Crosse, on Monday as long as his labs all look good. Then he’ll have some scans and a trip to Madison later in the week. We would ask for prayers for all of these. Prayers that his body stays strong and that all tests come back positive so that we can move to the next phase of his journey.
Also, prayers for Dianna and her body as she has been having some painful and scary issues that she will be getting checked out this week.
We know that, in this too, the Lord has us in His hands and so we just pray for stillness and peace. The kind that can only come through Him.
Thanks for being on this journey with us and for continually lifting my family up in prayer. I’ll never be able to properly thank you all but just know, it is much appreciated.
 
Elijah had a puking mishap in grandpa’s van, that was hilarious,

I can relate, my kid puked in their grandparents brand new car the day they bought it (so much for enjoying that new car smell).

Anyway sounds like a fun weekend. Prayers incoming.
 
Great pictures, glad to see Jedi out having fun. Dianna we will also pray for you and your health. Want the best for all of you. Thanking God for the good news and will keep praying for a full recovery.
 
We’re not alone
Journal Entry by Dianna Schaller — 46 minutes ago
Good morning to all! It is a beautiful day the Lord has made today, isn’t it? The sunshine, the cooler temperatures, and the changing colors are all reminders that a transition of seasons is upon us. Our family is definitely in a season of transition as we prepare to go to Madison with Jedi for at least a few months. Some of the boys will transition to a new home, and the others will gain a bit more independence on their own. We are so grateful that Jedi has made it to the transplant milestone of his treatment! This new season will surely present another set of challenges for our whole family. Jedi, in particular, is concerned about being away from his brothers and his kitty for so long. We are making plans to help ease the separation, and we are hoping to gain more insight regarding what day to day will look like when we meet with the providers in Madison on Wednesday.
So, overall Jedi is feeling good. We are in maintenance mode where his medication is concerned with the exception of one thing. Jedi’s CMV titer came back elevated on Friday (it wasn’t previously). This virus can reactivate when the body’s immune system is depleted during chemo. Unfortunately, the antiviral he is currently on will not cover for this new virus, so he was put on another antiviral medication on Friday. We are praying that it will work to suppress the CMV, so we can proceed with the transplant as scheduled. Please join us in praying for that as well. Also we ask for prayers for the donor, his health and his donation process. What an incredible gift he is giving our son! We are hoping to be able to meet him someday to say thank you in person.
Jedi also goes in for labs this afternoon, and we are praying that his hemoglobin, in particular, is stable so he doesn’t need a transfusion.
Please pray that our visit to Madison goes well on Wednesday, and I will check in here after those appointments to explain the information we received.
Thank you for joining with us to pray for the specific things we are facing each day/week. God definitely created us to do life together, and this journey has been challenging in regards to the isolation we have experienced. We have certainly had more family time and are so incredibly grateful for that, but we miss our extended family, our friends, and our church family. I know we are not alone in this as many people are feeling this way with the Covid 19 concerns. In my devotion for today God spoke through Isaiah 43:2 to remind me that “when you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.” He will always be with us whether here or in the “bubble” in Madison (more on that later). As an extra blessing during my devotion Pandora was playing in the background and Kari Jobe’s song “I Am Not Alone” came on as an extra reminder. Can you see the theme here? Dianna needs lots of reminders, and I’m thankful for a patient, loving Father who freely gives them to me
Blessings to you all from the Schallers
I am Not Alone
When I walk through deep waters
I know that You will be with me
When I'm standing in the fire
I will not be overcome
Through the valley of the shadow
I will not fear
I am not alone
I am not alone
You will go before me
You will never leave me
In the midst of deep sorrow
I see Your light is breaking through
The dark of night will not overtake me
I am pressing into You
Lord, You fight my every battle
Oh, and I will not fear
You amaze me
Redeem me
You call me as Your own
You're my strength
You're my defender
You're my refuge in the storm
Through these trials
You've always been faithful
You bring healing to my soul
I am not alone
I am not alone
You will go before me
You will never leave me
 
Hopefully the good news will continue. Will keep praying for you all. Trips to Madison, I will pray for you and Jedi as Madison is one the my least favorite places in Wisconsin. Praying for the day when Jedi gets a clean bill of health and return to a normal childhood. Sooner rather than later.
 
Prayers sent for Jedi and you all. The pictures are great. I look forward to continuing praying for your needs and reading your posts.

Don Dunlap
 

Just believe​

Journal Entry by Dianna Schaller — 49 minutes ago
Helping put together a new train table for the clinic.
Guardian kitty!
Giving his cousin a robot
Although not first expected, this turned out to be a pretty busy week for Jedi. We went to Madison Wednesday to meet with the head transplant doctor, Dr. Hofmann, and the inpatient and outpatient nursing staff. As you can imagine, we received a lot of information! The doctor had to tell us about all possible outcomes, so it was a heavy meeting at times. Patrick and I both agreed that our hope has never been in the numbers but in our faithful Father, so that is where our hope will continue to remain. He tells us, “Don’t be afraid; just believe” Mark 5:36
Jedi will be admitted on Wednesday, October 14, in the late morning/afternoon and will start treatment the next day to prepare his body for transplant. We will likely be in the hospital for 4-5 weeks. When he meets criteria for discharge we will stay local in Madison for at least another month. Big picture they are anticipating he feels decent through the first week, but the following 3-4 weeks he will likely feel his worst. All the side effects from wiping out his immune system could come during that time and make him pretty miserable. We are hoping and praying for minimal negative side effects for our sweet boy!
We were able to tour the BMT (bone marrow transplant) unit while in Madison. Jedi was happy to see his room and excited to see that there is an air hockey table (that converts to a ping pong table) in the hallway. He will remain in his room and that hallway the entire admission to keep him safe. It’s not a very large area, but they have activities and therapies for him to participate in as he feels able. The social worker put in a referral to the Ronald McDonald house, so Patrick can work close during the day and walk over to the hospital in the evening. We are praying that this goes through, and that there is a room available, so Jedi can have his daddy close.
Yesterday was supposed to be a routine clinic lab check, but because his immune globulins are low Jedi had to have an IVIG infusion. This took quite some time, but he tolerated it well. One side effect can be a decent head ache and unfortunately he developed one this morning. We are working through it, and I am once again in awe of the strength this kid exhibits through trials! Please help us pray it passes quickly
We just received a call from the doctor this morning informing us that Jedi’s CMV test came back lower, so the transplant is on schedule. Thank you, Lord, for your provision once again! A little side note on the CMV thing. I told you all about how last Friday the doctor had called to tell us about the high level, and that Jedi needed antiviral medicine that night. She had called nearly all the pharmacies in the area asking if they had the medicine in stock. She was met with the same answer each time...”it’s a rarely used medicine so we don’t stock it. It will take some time to order it.” That was until she called one last pharmacy, they said they would check the shelves, but it wasn’t something they routinely carried. The pharmacist came back and told the doctor she needed to buy a lottery ticket because they had one bottle on the shelf. No luck there...all divine providence!
A lot of you have asked how you can help when we go to Madison. Most of our kiddos will be staying with their Aunt and Uncle who are expecting a new baby any day. It would be a great gift to us all if you are able to provide a meal to feed the crew. Please coordinate your plans to bring a meal with our sister, Naomi. Her phone number is (608) 304-0459 and you can text or call her. Thank you in advance for helping us out in this way!
Also, our brother, Brandon is coordinating a “see you in a little bit” parade, so whoever is able can come show Jedi some love before he heads off to Madison. Here is a message from him:
Jedi is leaving for the Children’s Hospital in Madison next Wednesday morning (10/14) to begin the long process of preparing for, receiving, and recovery from a bone marrow transplant. Let’s remind him how much we care about him and how many people and prayers he has with him as he sets out to keep “Kicking Cancer’s Butt” with a parade past his house on Tuesday, October 13th. Jedi will be in his backyard from 5:30-6:30ish as we drive by and honk, wave, hoot, and holler. Feel free to make signs, decorate your car or whatever else you think might brighten his day.
Jedi’s address is N5980 County Rd OT, Onalaska – Please use Pineview for our parade though, it passes by their backyard and has much less traffic. You may even be able to stop and “talk”, just remember keep your distance – it would be best to stay in your vehicles and let Jedi and Mom/Dad decide how close they are comfortable being.
Please feel free to share with family and friends that would like to show their support for Jedi
If you have any questions contact Brandon Schaller – 608-385-8233.
So far this is a surprise to Jedi, so it will be exciting to see his face when everyone drives by in support of him!
Thank you all for support! We couldn’t do it without all of your prayers lifting us up and carrying us through!
Blessings on your weekend!
 
Hi all Well, we are in the hospital, but not the one we were supposed to be in when the day began.
We had Granny’s Halloween party early on Sunday, met our brand new niece/cousin on Tuesday and witnessed her baptism, and that evening were blessed with an amazing parade to send us off to Madison. We even called the Ronald Macdonald house this morning and there was a room waiting for us! We said our goodbyes and drove all the way to Mauston before we got a call from Jedi’s transplant doctor. We received the unfortunate news that his CMV test came back elevated again. Although it is not at a super high level there is active CMV, so if we were to go ahead with the conditioning treatment to wipe out his current immune system he would have nothing to fight the CMV. Completely understandable, but disappointing all the same. Since this will delay his transplant we chose to return to Gundersen for IV treatment for the CMV. The details are still being worked out, but tentatively we are in the hospital until Friday, and then we may go home on IV medication (I will administer it). Jedi’s oncologist and the transplant doctor are also working on possibly getting him CMV specific IVIG, as well as checking that the donor is CMV positive. We are unsure of a timeline for transplant at this point, but best I can gather is a delay of three weeks. The transplant doctor says they can’t rule out that the fever he had after the IVIG last week was not related to CMV, so she needs to be extra sure it’s under control. Then there’s the question of whether or not he needs another round of chemo to keep the cancer at bay. Such a balancing act between treating the cancer, which suppresses the immune system and allows viruses like CMV to creep up, and then treating the active infections. Please continue to keep these doctors in your prayers, as well as Jedi responding well to the new IV medication and his cancer staying in remission.
Jedi (and I) was understandably upset at the delay and we both had our moments of tears and sadness. Then we looked to God’s word for comfort and were blessed with Psalm 62:5-6: Find rest, o my soul, in God alone; my hope comes from Him. He alone is my rock and my salvation; He is my fortress, I will not be shaken.
We also started to list the things we are thankful for: that they found CMV prior to transplant, safe travels, more time with family (esp. baby McKenna), a hospital close to home that can treat Jedi...the list went on, but you get the idea. We also found peace in Psalm 18:30 where it says: As for God, His way is perfect; the word of the Lord is proven; He is a shield to all who trust in Him.
We are so thankful for all of you and your prayers and encouragement that carry us through these challenges. God is always good to us and His way is certainly perfect. We will keep our hope in those absolute truths!
 

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