Joseph Mohr – Support

(Jan. 27th | 1 p.m.) Joseph is the son of Jon and Caitlin Mohr and an amazing big brother to Eleanor. He had been having ongoing migraines over the last couple of months with no real relief. Finally, a CT was ordered, and the worst turn of events, it was revealed that there was a larger than golf ball-sized tumor on the back lower side of his brain. They were able to drain a significant amount of fluid around the mass to relieve pressure and take some of the pain away.

Currently, doctors are feeling confident that they will be able to remove all of it and with chemo and radiation, Joseph will live a completely normal and healthy life after this process. It is expected that Joseph will be in the hospital for the next two weeks and then in and out over the next 6 months. The surgery on January 27th is expected to last 9 hours or so. Updates to come.

Thanks for all the love, prayers and support thus far! Updates at the bottom of the page.

Next Steps:

The Mohrs are so thankful for all the people reaching out from across communities to support them in countless ways. Currently with being in surgery and locked into the hospital, the options of what can be done are a little limited. Keep saving up the support as we will be able to share it all very soon.

GoFundMe:  https://www.gofundme.com/f/stand-with-joseph-in-his-brain-cancer-fight

1. Best option per them is to send DoorDash e-gift cards – jgmohr84@gmail.com is the email. You can order online and send that way. Also they can use for target and other groceries so helps a ton.
2. A MealTrain will be organized for once they are able to travel back and forth more. That link will be posted here as well once ready to launch. Piling meals up at home, won’t be helpful at this point.
3. If sending anything to the hospital, be sure it is healthy if containing food. Please add to the list here so others can see what is also being delivered and what is coming in as well. Please try to review the list accordingly for like or similar items. Just drop off at main desk and give their name. Or even better for families in Elite, bring to practice and I will coordinate getting it to them. That way they don’t have a ton accumulating at the hospital as well. Control the flow to some degree.
4. https://docs.google.com/spreadsheets/d/1LMF2diJxlB_oLcbc9DIFeIkr5vYITHJeUoPHGDEbpts/edit?usp=sharing
5. If you have any questions please send to pbieser@wisconsinelite.org

Updates:

1. Jan. 27th | 3:00 p.m. – Surgery is going well, about 3 ish hours left to go. No hiccups are concerns at this point. Both parents are at the hospital waiting and receiving regular updates from the nurses.
2. Jan. 27th | 10:00 p.m – Surgery is now done. It went well as a whole. The tumor is now confirmed malignant – they will know what type possibly by the end of the week. There was a part of his occipital strand that added on about 90 minutes that they had to work around. There was part of the tumor that was connected to his brain stem, but they feel confident they got most of it. If there is any left over, the chemo/radiation should do its job in killing it. They will know more with the MRI tomorrow. He is now recovering in the ICU. A long and very stressful day, but he is otherwise done with the major operation.
3. Jan. 28th | 10:30 a.m. – The night was very long. He was puking all night and finding it hard to rest, along with the parents. Today is a big test day to figure out what the setback is at this point. Hoping that his responsiveness picks up over the course of the day.
4. Jan. 28th | 4:00 p.m. – MRI today for Joseph, nothing concerning and the surgeon is not seeing anything of concern. They feel that Joseph went through a ton of stress on the body and needs sleep and more time to get back to a more normal state. He is fairly unconscious at this point, but is reponsive to gripping and small movements, but eyes are closed. He is expected to stay in the ICU for a couple more days now.
5. Jan. 29th | 9:00 a.m. – On and off sleep throughout the night. Every hour woke up for a full brain scan and checkin – normal. Around 7:30 a.m. this morning he did have a mini seizure for about 2 minutes. They have placed him onto anti seizure meds, but doesn’t appear to be a major concern at this point of something larger. So careful monitoring again throughout the day. Joseph is supposed to be able to eat solid food today! Hopefully that helps a lot. In terms of long term plans, those have started to shape a little. After this initial hospital stay is done. It is expected that he will have 6 weeks of radiation at 5 days per week. Then he will shift to 9 months of chemo therapy. It is unclear if that will wipeout 100% of the cancer or some will still remain.
6. Jan. 30th | 12:00 p.m. – Joseph is currently feeling very irritable and restless, mainly with the inconsistency in sleep and constant exams. They have started spacing out the neuro exams more however. The posterior fossa syndrome that was warned about has kicked in pretty strong at this point. It is normal but still just another layer at this moment. His right side of the body is still has no movement and he is struggling to swallow. Current advice is to sit on the right side of him to encourage movement and stimulation on that side. His eyes finally are opening decently, but focusing on them getting to midline and not drifting to the left. All in all about 3 days post op recovery, so signs of progress, but very slow and steady at this point.
7. Jan. 31st | 9:30 a.m. – Joseph was moved out of the ICU finally late last night. He is gaining some limited movement finally on his right side of the body. Bowel movements have started as well. There will be another MRI today. Parents got at least 2 segments of 3 hours of sleep. So all in all a trending up kind of day – lets keep that going! GoFundMe has also been posted live today.
8. Feb. 1st | 6:00 p.m. – It is a good news kind of day – Joseph was able to sit up on a couch a couple times. With much support and for limited moments, but still big progress. The grandparents were able to visit and his speech is definitely picking up. Cheers to a great day Joseph!
9. Feb. 3rd | 12:00 p.m. – This morning has been a little slower at this point. The feeding tube has caused him a lot of irritability to the point he refuses to swallow at all. He ended up getting sick this morning because of it. He’s resting right now before the speech therapist comes in. We are hoping to remove the tube so he can try swallowing without the irritation of the tube down his throat. Fortunately, this is the only setback right now. Once he can get some real substance and nutrition, that should help speed up the recovery.