SUNDAY, OCTOBER 27th, 2019 Finally some great news to report! Chris will be coming home tomorrow; a month exactly from the day he went into the cancer clinic and was admitted into the hospital. Chris's chills and sweats are still occurring, but to a much smaller degree than previously. And although he has been experiencing these symptoms the last few days, he has not had a temperature above 100.4 (which is what the hospital considers a fever). Additionally, Chris's headaches seem to be manageable with just Tylenol. All of this, combined with the fact that his IV fluids were discontinued yesterday means there is no real reason to keep Chris in the hospital anymore! Although we are both a little anxious about Chris coming home after being in the hospital for such an extended period, we are all so incredibly happy that it is finally happening. V
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THURSDAY, OCTOBER 24th, 2019 The last few days have been a bit of a mental roller coaster. Chris's confusion has been in and out with his change in temperature. His headache and left leg pain have been pretty significant as well. Dr. Shah ordered a spinal MRI on Tuesday to make sure everything was still ok in regards to the lesions that were previously compressing his spinal cord (thinking that that may be what was causing his leg pain). The good news is that the lesions appeared smaller than they were on the previous MRI and there were no new lesions to report along the spine. Dr. Shah believes the pain (and the radiation burn) could all be the result of a phenomenon called radiation recall. https://www.texasoncology.com/cancer-treatment/side-effects-of-cancer-treatment/less-common-side-effects/skin-reactions/radiation-recall Chris was fever free from late Tuesday evening until yesterday night. We were optimistic that this may be the end of the CAR-T side effects. (C
SUNDAY, OCTOBER 20th, 2019 Chris has had several temperature spikes the last few days. The nurses have been giving him tylenol to help regulate the fevers, but his headache seems to be exacerbated by the fever. Today, after taking a shower, Chris also started experiencing chills and confusion. He couldn't find the answers when asked questions, or was using the wrong words in sentences. All of this is to be expected with CAR-T, but it doesn't make it any less stressful or frustrating for Chris. Unfortunately, we won't know how long the confusion will last, or if it will get any worse. I will continue to update as things occur. V
FRIDAY, OCTOBER 18th, 2019 Not a ton to update on so far. Chris has experienced minimal side effects so far to the CAR-T therapy. He just spiked a temperature of 100.4 this evening; as a result, he had blood cultures taken and a chest x-ray. Chris's headache is still lingering, and he was put on a pca pump of Dilaudid. Additionally, it looks like he has a radiation burn on his lower back from the lumbar radiation. There's not much that can be done for a radiation burn except for giving it time to heal and cream. That's all I have for now. Thanks for the continued love and support. V
TUESDAY, OCTOBER 15th, 2019 Today is the day we have been waiting for! Chris received his T-cells today. It was pretty anti-climatic, to be honest. He received Tylenol and Benedryl Tan hour before getting his T-cells, but getting his cells back only took about ten minutes. So far, we have not seen any side effects from the CAR-T. The biggest issue Chris has been having the last few days has been a severe headache. He ended up getting a brain MRI yesterday, and it showed that the lesion Chris has on his dura has actually shrunk; however, there is some swelling going on which is causing the headache. Unfortunately, the best remedy for the swelling would be steroids, but that is contraindicated with the CAR-T therapy. So, they are trying to manage his pain with some dilaudid. It's not great, but it at least takes the edge off. That's all I have for now, but I will update with any developments that happen. Thank you for all of your love and support,
THURSDAY, OCTOBER 10th, 2019 Chris has been doing better the last few days. He no longer has pain in his upper or lower back thanks to the radiation. The only issue he is currently dealing with is weakness in his left leg. Both of his legs are weaker, just from lack of use as a result of being in the hospital for a week and a half; and his left leg is even a bit weaker than the right leg because of the lesion compressing his lumbar spine. Chris has been seen by a physical therapist everyday to work on strengthening and stretching his legs. We've also been trying to take some walks to get Chris out of his hospital room and strengthen his legs. Additionally, we received an email from Dr. Shah letting us know that Chris's T-cells were being shipped today and should arrive at Froedtert on Friday. Chris will be starting day one of his pre-CAR-T chemo today since everything looks good and on time. He will get chemo Thursday, Friday, and Saturday. On Sunday he will move u
SATURDAY, OCTOBER 5th, 2019 I don't have a big update for today, other than Chris is doing well. He has been walking more, and the strength in his left leg has been improving. He is still dealing with some pain in his back, bit we're hoping it will be resolved shortly. The real reason I wanted to post tonight, was to share a podcast I found that shares information about leukemia and lymphoma. The podcast is on Spotify and is called The Bloodline. It's a podcast put on by the Leukemia Lymphoma Society. Some of the podcasts are a bit cheesey, but they have good information. Here's one I like regarding CAR-T therapy: https://open.spotify.com/episode/5BeEZBbzl1SvmuaAZyYBbV?si=PYsotlwhSJ-2y5w0LgxcMg V
SATURDAY, OCTOBER 5th, 2019 Yesterday was a good day. We were able to celebrate Stellan's actual birthday at the hospital with Chris, which was so great. Chris's lumbar puncture resulted as negative for any lymphoma in the CSF! This was such good news. Unfortunately, Chris will have to remain as an inpatient until after receiving his CAR-T treatment. With how aggressive his cancer is, Dr. Shah is moving up his treatment to as soon as possible; so once Chris's T-cells are shipped back to Froedtert (they believe this will be October 10th) Chris will begin the pre-therapy chemo (October 10th - 12th). After receiving the chemo he will have two days to rest and will receive his T-cells on Tuesday October 15th if everything goes as planned. After this he will remain in the hospital for another 10-14 days minimum while they monitor him for side effects with the therapy. In the meantime, Chris has begun receiving radiation to his lumbar spine, which we hope will begin to h
WEDNESDAY, OCTOBER 2nd, 2019 Chris was back to his normal self today, but just a little bit more fatigued. He had a lumbar puncture this morning and was given intrathecal chemo prophylactically. The results should be back tomorrow. He was able to get his EEG patches off this evening after there were no additional signs of seizure to report. It took about 90 minutes to get all of the glue off his head. Chris will likely stay on an anti-seizure medication for the foreseeable future just in case. The tumor board (consisting of oncologists, radiologists, neurologists, surgeons, etc) at Froedtert reviewed Chris's case and determined that radiation or surgery on the lesions around his brain we're not necessary. He started an oral chemo med tonight that will hopefully keep his lymphoma more stable; that combined with the radiation will hopefully be enough to bridge Chris to his CAR-T therapy. If not, Dr. Shah will re-evaluate. Chris's pain seems to be pretty manageable.
TUESDAY, OCTOBER 1st, 2019 Today was an extremely.....busy day. I received a call this morning from the nurse practitioner taking care of Chris saying that Chris had a confusion this morning, but more severe than he had experienced in the past. He was unable to remember where he was, what year it was, etc. They took him to get a STAT CT, which ended up coming back normal. By the time I was able to get to the hospital, Chris was back to normal. After speaking more in depth with the morning nurse, I learned had Chris had actually had a seizure in the morning, and the overnight nurse had heard a noise from outside and came in to find him incoherent and shaking. In addition to the CT, they also performed a brain MRI and began monitoring his brain activity via EEG to see if they could determine the area of the brain that caused the seizure. Because Chris needed all of the neurological testing this morning, he missed his first of two radiation oncology appointments. He was stil