FRIDAY JUNE 28th, 2019 Today was the best day yet! Chris has been having a headache ever since he finished chemo. Today, his headache finally got resolved! Today, Chris had an appointment with Dr. Shah, his oncologist. After going over his recent labs, everything looks good; while Chris is severely neutropenic, his liver enzymes are all decreased which is the desired effect of the chemo. Chris's labs are all trending in the right direction. Chris will have three lab draws next week to make sure everything is still good. Chris's next chemo regimen will be starting July 10th. Fortunately, Chris can do it as an outpatient. It will still take a number hours to get everything situated, but at least he can be at home for the most part while receiving treatment. I will keep updating the blog as things change, but as long as things are good, I will probably not be updating as often. Please, text or call with any additional questions. Thanks again for all of the lov
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WEDNESDAY JUNE 26th, 2019 CHRIS CAME HOME TODAY!!!!! And my heart is so full to be at home with BOTH Stellan and Chris together! Chris's headache eventually became manageable while at the hospital today, and he did not experience any nausea whatsoever. The ride home from the hospital wasn't the most comfortable, but Chris made it. Stellan came home around 5:30 and was so happy to be back at home with Mom, Dad, and the "kkkkkitties". Chris's appetite seems to have improved a bit since being home. Hopefully, that will continue. Chris will be getting an infusion of Neulasta tomorrow as an outpatient. Neulasta is a bone marrow stimulant used to help the body make white blood cells after receiving the chemo. We will meet with Chris's oncologist on Friday to get labs drawn and for a follow up. Chris will need to get labs drawn twice a week in between his chemo cycles in order to make sure his labs are normal. That's all I have for today! Th
TUESDAY JUNE, 25th, 2019 Unfortunately, Chris will not be able to go home today. He has been having a pretty severe headache since he woke up this morning as well as more of the neck pain he experienced yesterday. Both have lasted most of the day. As a result, the oncologist ordered another lumbar puncture to make sure the lymphoma is not in his cerebral spinal fluid. Chris also received another dose of Methotrexate (a chemo drug) into the CSF prophylactically. So far, the results of the lumbar puncture still look good. In addition, he has also had continued nausea and hasn't been able to keep much down throughout the day. The combination of the continued headache and nausea have led the oncologist to decide to keep Chris overnight in order to try and find out what the cause might be. On a positive note, Chris's liver enzymes continue to drop, which is good. We're hoping tomorrow will bring even better news. V P.S. Check out the pic of Chris's i
MONDAY JUNE 24th, 2019 Despite having very little complications with his first dose of chemo, Chris was not feeling the best. During the night he woke up several times, and when he stood up was feeling light headed and "off". These feelings carried on into the morning and were eventually accompanied by a head and back ache, severe nausea, and chills. In addition, his double vision seemed just as bad as the day before. Overall, just not a great day for Chris. Although Chris wasn't feeling the best, he was moving forward towards eventual discharge. He was completely dc'd from the Dilaudid pump; both continuous infusion and on demand boluses. He was transitioned onto oral pain meds, in the hope that if his pain is managed, he might be able to come home tomorrow. He still needs to stop his IV fluids, but our fingers are certainly crossed. In preparation for Chris hopefully coming home in the next day or so, my mom, Caitlin, Pat, and I had a major deep clea
SUNDAY JUNE 23rd, 2019 CYCLE 1 OF CHEMO IS OFFICIALLY COMPLETE!!!! 😁 Chris received the final two drugs of his 5 day chemo cycle today. The Cytoxan (cyclophosphamide) only took about an hour to infuse. Apparently it can be rough on your bladder, but Chris didn't have any side effects. After the Cytoxan, Chris was pre-medicated for the Rituxan (rituximab) with Benedryl, Tylenol, and Hydrocortizone. The Rituxan is started at 50 mg/hr and is increased by 50 mg/hr every half hour or so depending on how it is tolerated. Chris did not experience any side effects until the infusion was at 300 mg/hr; and even then it was only a headache. Unfortunately, the headache worsened the longer the infusion went, but it was completed within about 20 minutes of getting to 300 mg/hr. Chris's body tolerated the chemo phenomenally. The staff was pleasantly surprised by how smoothly it went. We are all hopeful that this will continue throughout the rest of the night. Chris is fee
SATURDAY JUNE 22nd, 2019 Today was another good day for Chris overall. He had some neck pain upon waking up this morning and a bit of nausea at the end of his 3rd liter bag of chemo, but otherwise had no issues. Unfortunately, the double vision is still present, but his liver enzymes decreased more today which is promising. So far, his kidneys seem to be tolerating the chemo well. Tomorrow, Chris will be receiving the last two drugs in the R-EPOCH regimen and will, therefore, have completed his first cycle of chemo. Yay! Unfortunately, the two drugs he will be getting tomorrow (cyclophosphamide / Cytoxan and rituximab / Rituxan) are the ones that patient's tend to have a reaction too. We are keeping our fingers crossed that tomorrow will go just as smoothly as the last three and a half days. Lastly, our thoughts were with our friends in Illinois tonight at the marriage of two amazing people. Although we were tremendously sad that we couldn't be there this weeken
FRIDAY JUNE 21st, 2019 Today seems so boring after all the ups and downs of the last week and a half. Chris didn't sleep super well because of all the fluid he's receiving as a result of the chemo. Despite all of the bathroom breaks, he was given Lasix to help with fluid retention and swelling from all of the fluid. Both the nurse practitioner and the attending oncologist stopped in today and said that his body is tolerating the chemo well and his liver enzymes are decreasing, but not dropping dramatically. So far so good. Chris did receive a unit of blood today. His blood levels are good for being an oncology patient, but they feel that raising his Hemoglobin level a bit could potentially help his double vision. Speaking of double vision..., we picked up a sweet pair of new glasses to help with the situation until it resolves on it's own. Check out the pictures. Lastly, Stellan was able to come and visit Dad today. He had a blast looking out the window fro
THURSDAY JUNE 20th, 2019 Compared to yesterday, today was much more tame. Unfortunately, Chris woke up with pretty significant double vision. After speaking with the attending oncologist, an opthamalogy consult was ordered. While waiting for the opthamologist to come, he had a good amount of visitors, and was kept busy almost the entire day. The opthamalogist did a full blown eye exam on Chris with a couple extra bells and whistles added on. He determined that Chris's double vision was likely caused by a "stroke" to his 6th cranial nerve (6th cranial nerve palsy). Because of the chemo, Chris's hemoglobin is low again and the opthamalogist believes that this is the cause of the nerve palsy; typically this resolves on it's own. The eye exam was otherwise unremarkable and the opthamalogist will check back in next week. Other than that, it was a pretty uneventful day (finally!). Chris seems to be tolerating the chemo well and the results so far are as
WEDNESDAY JUNE 19, 2019 Well...good or bad, today we received the information we have been waiting for. Chris had his PET scan first thing this morning. He no sooner arrived back in the room and one of he hospital proceduralists was prepping the room for his bone marrow biopsy. It took two attempts, but the bone marrow biopsy was successful, and the lab obtained everything they needed. Within an our of the bone marrow biopsy finishing up, Chris was being prepped for his lumbar puncture. During the puncture. the proceduralist removed some of Chris's spinal fluid in order to test it and see if there are any lymphoma cells in the CSF. Since access to the spinal fluid is not the easiest thing to obtain, a dose of Methotrexate was put into his CSF prophylactically. If Chris does end up having the lymphoma cells in his CSF, he would need to get the Methotrexate once during each round of treatment. We should here the results of the biopsy and the spinal tap tomorrow. Now for
TUESDAY JUNE 18th, 2019 What a whirlwind. After finally getting settled at Froedtert early this morning, Chris had another good night of rest. Things here have definitely been set in motion. Chris was seen first thing this morning by a nurse practitioner for the attending oncologist on the floor. She reviewed his symptoms and everything that has been happening the last few weeks. She was also able to set a few expectations for us as to how things will be moving forward. Not long after that we were visited by Dr. Nirav Shah, a hematology and medical oncology physician who specializes in lymphomas. He will be seeing Chris once his specific diagnosis is determined and confirmed (Likely Thursday). He spoke with the attending oncologist on our floor and ordered the remainder of the diagnostic testing required before moving forward with chemo. Today he had: An echo of his heart to make sure it would be able to handle chemo and get his baseline functionality before starting che
MONDAY JUNE 17th, 2019 Today was a good day! We learned today that Chris's lymphomas is a high grade B-cell lymphoma. While it's not an official diagnosis, it's certainly pointing us in the right direction. Most of the rest of the day was a whole lot of waiting. We were hoping to hear the details of a transfer to Froedtert Hospital so that we could start expediting any of the remaining tests and start treatment as soon as possible. Finally, around 3:30pm, we heard that the transfer had been approved by all the necessary parties and we were just waiting on a confirmed bed at the hospital. Unfortunately, the bed/room number didn't come until about 7pm. After that, an ambulance had to be called to transport Chris since he was on a continuous drug infusion; unfortunately the correct type of unit wasn't called the first time, so he had to wait a bit longer to get on the road. Around 9:30 pm, Chris was finally on his way. We just got a room in the oncology u
SUNDAY JUNE 16th, 2019 Happy Father's Day! Chris had a bit of a disruptful night last night, but it was well worth it. Per usual, Chris has had a LOT of blood draws lately to monitor and track trends in his lab values as well as check for markers specific to cancer in his blood. Yesterday night, the hospitalist came into Chris's room and discussed the possibility of a blood transfusion due to a drop in the hemoglobin level in his blood. At 10:30 pm, the doctor came in and told us that the IR physician and himself decided that Chris should receive one unit of blood. They started the infusion around 12 am. It took about two hours to infuse and they repeated a blood draw to test his hemoglobin level an hour after the infusion finished. The hemoglobin was only 0.2 mg higher that it was before the unit of blood, so around 5:00am, they decided to give Chris another unit of blood. His blood was drawn again at 8:30 am and his hemoglobin came back 1.5 higher than the previou
SATURDAY JUNE 15th, 2019 Chris slept pretty well last night and was able to get some much needed rest. While waking up feeling rested, he was also feeling a bit anxious and what he described as bloated. Bleeding is always a possible complication with procedures like his biopsy, so we were a little concerned that he was feeling bloated even though he hadn't eaten in 36 hours. After some initial discussion, the physicians decided that Chris should have some labs drawn. His hemoglobin came back as slightly below normal and he ended up getting an abdominal CT. The CT showed some blood in the peritoneal cavity, but not enough to need immediate intervention. His hemoglobin was monitored throughout the day, and because it was continuing to drop, the hospitalist and IR physician ordered a unit of blood for him. He is currently receiving that unit, and based on how his following hemoglobin results are, they will determine if he needs an additional unit of blood. He will be monitor
FRIDAY JUNE 14th, 2019 It has been a long week so far, but all of this really started on Wednesday, May 29th; just over two weeks ago. Chris was at work and texted me that he was having some Persistent back pain that was eventually radiating to his shoulders and neck. I asked if he took any Advil and suggested that he maybe get out for a walk and do some stretches. I checked back in a few hours later. He said the pain was better, but he was still getting a little pain and numbness in his left shoulder, arm, and neck. Working in the cardiac field, I immediately told him to call his doctor and describe the symptoms with concern that they were cardiac in nature. The doctor was not overly concerned with his symptoms. Chris was having similar numbness and discomfort the following two days at work and made an appointment with his primary doctor for the following week. He he was in the Dells for the weekend, and while he experienced some periodic pain and discomfort, it was tolerable.