I’m posting this because I’ve had quite a few people ask for it but also, honestly, we really need your help.
Shannon has been unable to work since April. I’m only working part-time. We’ve burned through our savings account. On top of all of the regular daily bills we now have to pay out of pocket for his medical insurance. We have been using a lot of gas with all of the driving, hotel expenses, food while in Rochester and now, as he moves into the bone marrow transplant process it will become more intense.
We’ve had to rent a furnished home in Rochester for the 8 week minimum process as he has to be within 15 minutes of Mayo the entire time. Molly and I will be taking turns staying with Shannon so I can keep working but it will mean a trip down and back each week for each of us to be his caregiver. Parking fees, purchasing groceries for our “vacation home,” and my car is going to need tires before snow due to all of the mileage put on them these past 5 months. We’ve had to use credit cards but that’s going to catch up with us soon.
We do appreciate all of the love, prayers, help with driving to Mankato and friendship but if you can help with this need we’d really appreciate it. God has always provided for us in the past and we know that He will continue to do so. Thank you!
PS-If you’d rather give to us directly, just message one of us for our address.
Friday September 10th update-yesterday Shannon had a PET scan, blood work and doctors appointment. Unfortunately during preparation for the PET scan they discovered that Shannon’s PICC line where they give all meds and take blood draws, was clogged and no longer functioning. It ended up needing to be removed and his last two vitamin C infusions cancelled. They put in an iv for the scan.
Next was blood draw at the lab. They tried 4 times before they were able to get the blood needed for his tests. Shannon used to have great veins but chemo has been very hard them. This is typical.
In the afternoon, after all of the test results were in we met with the oncologist. Shannon’s platelets were at 4,000. They should be at 135,000-317,000. This put him at a huge risk of stroke or internal bleeding. He also had a very low potassium level. Admitting him was discussed briefly but it was decided to send him directly to the infusion center where he was given a unit of platelets and two bags of potassium. He was also given oral potassium to take at home over the next few days.
The PET scan…..Praise God! The PET scan showed significant improvement to Shannon’s cancer! The doctor was incredibly pleased, especially when the previous scan, two cycles of chemo ago, didn’t show as much as was hoped. It was decided Shannon is a candidate for a bone marrow transplant so that is the next step.
Some have asked me why a BMT if his cancer is nearly gone. Shannon has a very aggressive blood cancer. It grew from nothing in November to nearly killing him in April. It is important every single cancer cell is killed or his cancer will be back with a vengeance in a few months.
So, the BMT process will begin on September 27th. Shannon will be moving to Rochester and is expected to be there for 8 weeks or more. Molly and I will be taking turns being down there with him as his caregiver. We have rented a furnished home through VRBO and will be staying there. It is very expensive but is less than a hotel room and much more comfortable.
I am sharing Shannon’s PET scan images with his permission. The darker white is cancer except in the head, intestines (scan 3) and kidneys (scan 4)You can see the progression from April when we first received his diagnosis and saw that he was filled with cancer everywhere, to June when it was discovered the first type of chemo wasn’t working well enough. Then in late July when we saw the new chemo and vitamin C were working but not as well as hoped, to yesterday where nearly all of the bad cells are gone!
We are happy, thankful and blessed. Shannon has a couple of weeks at home now to recover from chemo and prepare to be away. If you want to visit, contact us soon. Thank you for praying. Keep it up cause it’s working!
link below for pictures!
Friday September 3rd update-Shannon has been home for a week now since his most recent chemo. He’s been feeling pretty good. His main side effects continue to be fatigue and weakness but he’s still been keeping himself busy three days a week with his Vitamin C infusions in Mankato and then tinkering and working on tractors and other things. We have a fairly quiet holiday weekend planned and are hoping to go to the car show in Sunburg on Monday. This time of year is usually pretty busy for us with fairs, Renaissance Festival, threshing shows and swap meets but with the amount of walking required those activities are off the calendar for now.
Shannon’s blood counts today were ok. His hemoglobin is low but not low enough to need blood infused. His platelets dive bombed this week from far above normal down to low normal making me glad we turned down the platelet killing Lovenox injections while hospitalized last week.
I opened up the Mayo app today to look at his appointments next week and saw the list of upcoming appointments over the next 5 weeks. The video shows a quick peek of the busy. The crazy thing is, a few of them are next week but then he has two weeks off before the bone marrow testing and gathering and transplant process begins.
I’ve begun searching for a home for us to live in during the 6-8 weeks that he has to stay there. Molly and I will be taking turns being with him during that time. We don’t qualify for a free one we were looking at and another possible one that would have been a large group setting for $1000 per month isn’t going to work for us. We are finding a rental is going to run us about $2000 per month but it will be a private home not shared with others which will limit exposures to other people’s germs during this fragile time. I’d rather put that money towards our mortgage but we will make it work.
In spite of all that is happening in our life, we feel incredibly blessed through the process. We know God leads us through and prepares the way. We trust him to give us strength and provide all that us needed as we proceed. Thank you for the love and prayers!
Wednesday August 25th update-After being given an extra week reprieve, Shannon’s blood was able to do the healing needed. He actually really enjoyed last week as he was feeling a lot better.
Yesterday Shannon was admitted for round 4 of this particular chemo regimen. We are praying these next several days go well with no rashes, allergic reactions, cardiac anomalies or fevers. If things go really well there is a slight possibility for a late Thursday evening discharge.
In a couple of weeks he has another PET scan to see how things have progressed and to confirm that bone marrow transplant will be the next step.
We did receive a phone call this morning from scheduling to give us the current plan, subject to change. It is looking like Shannon will be moving to Rochester in the end of September and he will be here for 6-8 weeks or more for tests, injections, chemo and all that goes with the transplant process.
We’ve known this was coming eventually but to actually have it on the calendar…..it gives me butterflies and I’m not even the patient.
We know God is bigger. God loves Shannon more than anyone ever could. God has a plan. We cling to Him knowing He is in control of it all as we try to focus on one day at a time and how to live each one well.
Love to all and thank you for the prayers.
The past couple of weeks since the most recent chemo have been harder on Shannon’s blood than in the past. Shannon has continued traveling to Mankato for his high dose vitamin C infusions with the help of friends and family. (Thank you) He also gets blood tests each time. Due to a low hemoglobin two weeks ago he was given a unit of packed red blood cells. Then a few days later when his platelets dropped to almost nothing they gave him a unit of platelets.
Usually during week three his body recovers on its own and his blood normalizes a bit before the next round of chemo.
Today we went to Rochester to be admitted for his next round of chemo. Unfortunately Shannon’s blood hasn’t recovered enough that they feel safe doing a treatment this week. So, after mentally preparing and physically lining up all of the details to be gone from home for the rest of the week, we were told to leave and return next week to try again.
We feel fortunate. At the doctor appointment as the entire list of potential chemo side effects were read-neuropathy, mouth sores, rashes, pain, fever, swelling, vomiting, diarrhea, dizziness, weakness, and on and on-Shannon has really only experienced weakness and fatigue. Of course he’s had a few incidences that they are aware of with the allergic reaction but he has been blessed through the journey.
So, praise God for the mild side effects but also please pray for Shannon’s blood counts to bounce back to some more normal numbers…so we can annihilate them yet again. 😂Sometimes you have to laugh through the struggle.
Wednesday August 4th update-Its been a busy week. Since the last update Shannon had his three day inpatient chemo. He did have a very mild allergic reaction, likely still from the discontinued med still in his system for up to 40 days mixing with the chemo.Also, on Thursday afternoon he ran a fever for about 8 hours. By midnight it was gone. Friday morning just as he was supposed to be discharged the doctor came in to tell him he was very anemic. His red blood count was down to 6.8. For a guy it should be between 13-16. They wanted to give him packed red blood cells prior to discharge. At that time he was feeling fair and just wanted out of there so they allowed him to go but suggested that if it was still that low on Monday at his vitamin C infusion he get a pint of blood.
After discharge we met with the bone marrow transplant doctor. He was concerned that Shannon is not ready yet and wants him to have another round of chemo before another evaluation. One thing we did find out that was great news-if one receives their own bone marrow, which he will, it is only a 6-8 week time frame away from home rather than 4 months. That's a huge relief for sure.
On Saturday Shannon had a slight burst of energy and he and Collin baled 207 bales of hay. Shannon drove the tractor and Collin threw the bales. Shannon really enjoyed his John Deere "2 Cylinder therapy." This crop of hay was sold prior to even being baled.
On Monday Shannon and Molly went to Mankato for his vitamin C infusion and his red blood cells were still at 6.8. By then Shannon was feeling pretty rotten-very weak, sleepy and absolutely no energy, and napping several times per day. He still didn't want red blood cells and no one at the infusion center brought it up to him so he didn't either. Today, Wednesday though, Shannon had a hard time even getting out of bed. My dad was his transportation to Mankato and when Shannon got down there he requested a blood infusion so after he received his Vitamin C he received a unit of packed red blood cells. By the time he and my dad got back to our place this evening Shannon was feeling a lot better.
Current prayer requests:
-for the chemo to be doing its job and for cancer to die
-for strength both physically and emotionally for both of us, this is wearing for me too
-for Shannon's mom, Karen. She was taken to the ER this evening and is being transferred to St. Could Hospital for some possible kidney issues
I also have a praise report. Finances are becoming a bit challenging here. Shannon hasn't had any income since the end of May and I'm missing a lot of work. Increased expenses due to gas, hotels, food away from home and co-pays have drained our savings. However, as a Young Living distributor for 8 years I had a huge stash of my own brand new, still sealed products. I decided that it would take a lifetime to ever use them so I listed them for sale on facebook at a deep discount. In just a few days I made nearly $2000! I met a lot of really nice people and a couple of them blessed me extra with a couple of nice items we can use. You know who you are. Thank you. They say a bird in the hand is worth more than two in the bush. Don’t worry. We still have shelves full of our opened essential oils that are used daily. We will never go without our Young Living products.
Hopefully things will be quiet over the next week and a half. Shannon will still go to Mankato for his Vitamin C three times per week and then the week of the 16th be admitted again as far as we know.
Thank you everyone. We appreciate the prayers!
Tuesday July 27th update- We’ve been kind of quiet the past couple of weeks because things have been relatively uneventful. Shannon has still been going to Mankato three times per week for his Vitamin C infusions. He’s frustrated as he’s been pretty tired and low energy. Although he isn’t feeling “sick” with nausea and vomiting he hates the need to take one or more naps to get through the day. Even walking just 100 feet takes a lot out of him.
Yesterday we came down to Mayo for tests. His PET scan from yesterday shows some decrease to his cancer but the doctor would have liked it to be more affected. Shannon was admitted today and a third round of this chemo recipe has been started, fifth altogether. He will be discharged late Thursday or early Friday if all goes well.
On Friday he has an appointment with the bone marrow transplant doctor who will decide if Shannon is ready to move on to that next step. Then after that we will see a social worker who will help us with housing, finances and more that goes with the bone marrow transplant. If he does get the transplant he will be an inpatient for three weeks and then after discharge he has to live here in a Rochester for 100 days. He also needs a caregiver with him 24/7. There are a lot of details to work out.
We are also looking for companions to travel with Shannon to and from Mayo the next couple of weeks. It involves taking Shannon’s Escalade or your car if you prefer. He just needs someone along in case he’s too tired to drive. If you’re able to do a day trip please let me know.
We are praying for an uneventful few days and safe travels home at the end of the week. Thank you for your prayers, love and support.
Wednesday July 14th update-If you’ve been reading you know there was some concern that Shannon could be allergic to the high dose vitamin C. He was sent home with an epi-pen prescription in case he had another reaction to the Vitamin C infusions or anything else. On both Monday and today he went to Mankato for his Vitamin C. We are happy to report that he has had no negative effects.
Also, the 25 pounds of extra fluid is nearly all flushed from his system and he weighs close to what he weighed prior to admission last week.
Shannon is a week out from his most recent chemo infusion and that is about when he feels pretty yucky. He’s not vomiting thankfully but is very tired and worn down as well as very low on energy. We trust he will feel better in a few days.
He will continue to be on the high dose Vitamin C trial. We saw on his list of Mayo appointments he is scheduled to be admitted two weeks from yesterday which is three weeks from his most recent chemo admission. We expect there will likely be some testing the day before to see how the current regimen is affecting his lymphoma.
Thank you to everyone for the prayers, cards, texts, calls and support. We feel them and appreciate you all. #godisbiggerthanthespleen
Sunday July 11 update-In spite of Shannon’s allergic reaction to who knows what, he was able to finish his chemotherapy last week and by Friday afternoon the doctor felt comfortable letting him come home.
From when we left home Monday afternoon until we arrived back home Friday evening, Shannon gained 25 pounds. Yes, 25 pounds of fluid due to the infusions but also his allergic reaction and inflammation. Friday overnight into Saturday morning he lost 5 of them. He hasn’t weighed himself yet today but he’s starting to look and feel better.
He and Collin are outside tinkering on their hay equipment today. They have some hay they are needing to bale in the next few days. (No worries…Shannon just drives the tractor)
The plan is for 3 trips to Mayo in Mankato both this week and next for Vitamin C infusions. Then the third week we will return to Mayo for testing to see if this treatment plan is helping. Depending on those results, he will move into the bone marrow transplant process which will involve 4 months away from home.
We can only take it a day or two at a time or it gets far too overwhelming. In the meantime we hold tight to God’s promises. #godisbiggerthanthespleen
Wednesday July 8th update-after last week’s ER visit for some form of allergic reaction, Shannon was placed on high dose steroids and told to skip the high dose vitamin C infusions until we saw his doctor at Mayo again this week. Over the weekend his rash cleared up.
After a weekend celebrating Independence Day with family as well as our 34th wedding anniversary we arrived at Mayo on Tuesday morning. He had a visit with his hematologist and several routine tests and then was admitted to the hospital for his second round of the second type of chemo as expected. It was decided that a heart med was likely responsible for his allergy. Chemo and Vitamin C infusions began that afternoon. We were told yesterday that he would likely be discharged early this time on Thursday evening instead of Friday.
I packed up and checked out of the hotel this morning. When I arrived at the hospital at 645 Shannon was still waking up but I noticed right away that he was red and swollen again. His voice had also changed due to the inflammation. The hospital staff got to taking care of him right away with anti-inflamatories, anti-histamines, steroids and more. His blood pressure dropped down to 82/38 at one point. He is stable right now and sleeping. The IV Benadryl wipes him out. This chemo infusion is nearly over but he’s still supposed to get another infusion of Vitamin C.
Shannon is afraid it is the Vitamin C causing the reaction. The doctors are doubtful of that and state that would be very unlikely. They believe what is happening now is an “echo reaction” of last weeks anaphylaxis and still due to the cardiac drug which has a 40 day half life and is still in his system. Also, reducing the steroids and adding in chemo may have caused the reaction to flare up again.
All of that to say, we won’t be coming home today. Hopefully tomorrow or Saturday. The hotel staff must have been surprised when I rebooked a room just two hours after checking out.
Please pray for Shannon’s body to settle down and to heal. Also for his care team to be making the best decisions they can.
Fighting cancer is not for the weak! But we know he isn’t fighting this alone. We have the love, prayers and support from many and most importantly, because #godisbiggerthanthespleen!
July 4th, we will have been married for 34 years! I love you so dang much it makes me feel like I’m bursting…and it keeps growing! We’re gonna kick cancer’s ass together and have many more years with each other! Thanks for being my man.
Wednesday June 30th update-we are in a bit of a holding pattern here. On Sunday, Shannon had a very slight rash. On Monday, when he returned from his vitamin C infusion at Mankato, I noticed immediately that his rash had gotten worse and the inflammation was so bad his face was even misshapen. Yesterday he began to run a low grade fever. We were able to get it back down with Tylenol and a cool bath. This morning when he woke up his tongue and mouth were even swollen. A phone call to Rochester with a provider there and it was decided that he needed to get to an ER. He and I decided he was stable enough that he and Molly drove to the Mankato ER because it’s part of the Mayo system and he was scheduled to get his vitamin C there anyway.
Ultimately, he was treated for an allergic reaction with Benadryl, epinephrine and prednisone all through his PICC line. They haven’t determined what he’s allergic to yet. His Vitamin C infusions are on hold and he sees his doctor next Tuesday prior to his previously scheduled chemo for next week.
The pictures show just small portions of his belly and his leg. His whole body looks like this. The ER doctor called it “quite impressive.”
Please pray for relief from the rash and the itching. We really want his treatment to be able to continue as scheduled. #godisbiggerthanthespleen
Wednesday June 22 - Praise God for His provision! Thank you to those who have been praying and thank you to those becoming part of that provision.
We have had several volunteer to ride with Shannon to and from Mankato. Next week I don’t have to take any time off from work at all!
We also found someone to move in with us for awhile to help with taking care of the home and pets when we are away. This had become a huge concern as we discover we are going to be gone more and more, especially when Shannon moves into the bone marrow transplant stage. The individual was needing a place to stay and we needed someone to stay! It is, we think, a perfect match!
Thirdly, we’ve had several financial donations come in with perfect timing to meet particular expenses related to Shannon’s fight.
Shannon is feeling relatively well. Side effects have been minimal but his blood counts are low so he is sleepy and tires easily. But there has been no vomiting.
Right now, he and I are at Mayo in Mankato where he is receiving one of the three 100 gram Vitamin C infusions of this week. We are so thankful this could be done in Mankato to save us the extra hour plus each way to Rochester.
It looks like he will receive his 2nd round of this particular chemo regimen the week after July 4th as an inpatient.
Thank you for praying!
Follow our story on Facebook @ #godisbiggerthanthespleen
7 weeks ago Shannon began chemotherapy for Stage 4 Large B Cell Non Hodgkins Lymphoma. Everyone says lymphoma is the “good kind of cancer” because it is “easily treated” and has a 90% cure rate...we are still waiting for the "easy" part. He began with a chemotherapy regimen called RICE. After two sessions over 6 weeks he had a repeat PET scan and it was discovered that although the chemo had helped some it was not nearly enough. We were surprised because he had been feeling so much better.
This week Shannon was admitted as an inpatient to begin a second and more agressive treatment plan called RICE. He was also given the opportunity to participate in a high dose Vitamin C trial which he accepted.
He will have chemo as an inpatient again in 3 weeks. In between times he is getting IV infusions of Vitamin C three times per week in Mankato. After he has 2-4 rounds of this chemo and if it controls the cancer, he will be moving into preparation for a bone marrow transplant.
With bone marrow transplant he will have a 3 week inpatient stay and then has to find a place to live in Rochester for the following 100 days.
Needless to say, this is going to be a long, grueling and expensive rest of the year. And we all thought 2020 was a crappy year. Lol.
Thank you so much for the prayers. We feel them and appreciate them. If you are on Facebook, I post updates there fairly often. Feel free to friend or follow either Shannon or myself. ❤️