Brandon has a great group of friends and family who love and support him, and he’s thankful for each and every one.
On that topic, some friends he’s known since elementary school are holding a fundraiser for him this weekend. For those of you who don’t already know about it:
Brandon does plan to come to the event on Sunday, although he may not be able to stay long. He would love to see you !
Sorry for the long break between updates. Brandon decided last week to take a week off. No doctors, no treatments, no labs. Just take a week and see how he felt and how much he could eat. The last chemo treatment really knocked him back, so he needed that break. Avery also came down with a cold last week, so time slipped away while taking care of her, and the week went by without an update.
Brandon has struggled the last couple of weeks, more so than before. He said that everything from getting a glass of water to moving from the bed to the couch has been a chore. We were hopeful for the best but (somewhat) prepared for the worst going into today’s appointment. As much as you think you’re prepared, you’re not. The scan showed that Brandon’s cancer is advancing. There is a spot on his liver now, in addition to the peritoneal wall involvement. A couple of the masses have enlarged enough to cause partial obstructions, and those are causing Brandon’s difficulties with eating and keeping food down. Brandon can still eat, but he has to be careful about what he eats so he can avoid a total obstruction. The doctor didn’t push Brandon to go back on TPN because he is focusing on quality of life, and the TPN wasn’t allowing Brandon the quality of life he wants. He also said there would be no more chemo treatments because the cancer isn’t responding to the chemo anymore, and Brandon has lost enough weight that his body just can’t tolerate a different type of chemo.
There is one last piece of ammunition they may be able to use against Brandon’s cancer. There is an immunotherapy trial for rare cancers. The doctor isn’t sure he can get Brandon into this trial, and he’s not sure that the immunotherapy will help if he does. Brandon’s molecular profile didn’t show any evidence that he would respond well to this therapy, but the doctor said it wouldn’t hurt him, so he has nothing to lose by trying it if he can get approved. It will take at least a couple of weeks to find out if he is accepted, so we have another appointment with the oncologist in two weeks. In the meantime, the palliative care doctor has increased his pain medication dosages and prescribed another medication to help him sleep more soundly and consistently. This medication may also help with his appetite. If Brandon is not approved for the immunotherapy trial, the palliative care doctor will work alongside the oncologist to coordinate his care going forward with a focus on pain management and quality of life.
It takes strength and courage to fight the battle with cancer. It takes even more to admit and accept it when the fight is more than your body can handle.
It seemed like Brandon had a decent week last week. He didn’t have chemo, and he only had a couple of days when he had trouble keeping food down. He was able to eat more on most days, and with the help of the steroids he can take as needed, he was able to get out and run errands with his family on Saturday for a while. He was able to spend some time with friends at home on Sunday as well.
We had high hopes that he would have gained at least a pound or two when he went to the doctor yesterday, but instead he lost a pound (or just under a pound). The medical team gave him the option of holding off on chemo, but he said he felt like going ahead with it. They did reduce the dosage to be more in line with his weight now, and we hoped that would also reduce some of the harsh side effects. By the time yesterday evening rolled around, he was in bed and not feeling well.
Next week was to be his “off” week with no medical appointments, as they’ve decided on an every other week schedule for chemo now. However, since his weight was still down a little after having a week when he was able to eat a bit more, they asked him to come for labs and to see the doctor next Tuesday just so they can check in on him and give him fluids if he’s not feeling well. Let’s hope the chemo effects subside quickly and he’s able to get back to the most important task of getting some nourishment into his system.
Brandon had a relatively “good” last couple of days. He was able to eat a little more (and keep more down), and he wasn’t in as much pain. He was talkative and engaged when we went for his chemo appointment this morning. He had lost a few pounds while trying to go back on TPN, but he gained a couple of those back as of today, which was good news. The oncologist is still concerned about his nutritional needs being met and would like for him to gain some weight in order to better tolerate the treatments. Brandon’s hemoglobin was low this morning, which was surprising because he didn’t seem as run down as he usually is when this is the case. So instead of doing the chemo today, they decided to give him two more units of blood and wait another week to see if he can continue to eat more food, drink more protein drinks and maybe gain another couple of pounds before doing chemo again. Brandon says his appetite is good and is learning by trial and error what does and doesn’t sit well when he tries to eat.
We hope he continues to feel better as this week goes on and is able to get a little stronger before his treatment next week.
We had hoped the TPN would be just what Brandon needed to gain some energy and strength. It turned out to have just the opposite effect. He started it on Wednesday and was even more nauseous than he had been before by Friday. By Saturday, he barely had the strength to move from the recliner, and he couldn’t even keep water down. He quit TPN on Saturday night, and he had a little more energy/appetite on Sunday. He had friends over on Sunday, and he enjoyed being able to visit with them instead of being sick in bed all day. Monday and Tuesday were up and down, a few decent hours and some not so great hours, but nothing as bad as Saturday. Just back to what he’s been feeling like over the past couple of months.
The home nurse who monitors TPN came yesterday and took blood so they could check his labs. Once the results are back, the oncologist said he would talk to us about options going forward if Brandon cannot tolerate TPN. He has an appointment scheduled on Tuesday, followed by chemo, so if we don’t hear from him before, we will find out then. This is Brandon’s “off” week from chemo/appointments, so we’re hopeful he will feel well enough to just rest.
Brandon was able to spend time with his family and some friends over the Labor Day weekend, although he didn’t feel all that great. He was able to eat a bit and enjoyed having everyone around.
He had chemo again yesterday, after a two-week break. So far, so good. He doesn’t feel fantastic, but he doesn’t feel as bad as he’s felt after some of the prior treatments. They decided to do one treatment and give him next week off instead of the two weeks on/one week off routine, and we’re hoping that helps him bounce back more easily.
He has the new port in place, and the agency handling his TPN is coming today to start that. He will be on TPN 24 hours a day this time, at least until he gains some weight and builds some strength. They’ve changed the formulation they are giving him, so he will hopefully be able to eat meals as well as take in the nutrition through his port.
Let today be the day he starts to gain weight, increase strength and feel better!
Brandon got fluids on Tuesday but wasn’t able to get the unit of blood because there wasn’t time to process the labwork necessary to order the blood that afternoon. He’s getting more fluids and the blood this morning. After that, he will head to interventional radiology to get his port. It’s an outpatient procedure but does require anesthesia. He should be in and out within a couple of hours. Say a prayer and hold good thoughts for him today. We are hoping for a speedy improvement once he is back on TPN. He will see his oncologist on Tuesday, and the plan is to do chemo again that day.
Once he’s finished with his appointments today, it will be time for birthday fun with Avery! She is three years old today!
Thanks for continuing to check in on Brandon and offer your prayers and helpful suggestions. He was scheduled to have chemo today, but they decided to postpone it for one more week. His heart rate was a little high, as was his white blood count. They believe this is due to dehydration, as he is continuing to lose weight and battle nausea. He’s been trying to drink the protein shakes and eat as much as he can, but he has trouble keeping anything down. They are giving him fluids and a unit of blood today in hopes of helping him feel a little better.
Brandon has also come to terms with the fact that it’s time to go back on TPN since he’s not getting the nutrition his body needs. They plan to put the port in sometime before his chemo treatment next Tuesday so he can get started on that again.
His oncology team suggested he try acupuncture to see if it would provide any relief from his battle with fatigue or nausea. He had a treatment yesterday, but it didn’t seem to make him any less tired or any less nauseous. At this point, we believe what will help him most is getting some nutrition in his system. Perhaps after he gains some ground in that area, the integrative medicine treatments may be more helpful.
Brandon didn’t do so well with chemo last week, so he’s taking a break this week. Today would have been chemo day, but he’ll just do labs and get fluids today instead and start back on chemo next week. He’s been having a hard time with nausea and hasn’t been able to drink his protein shakes like he needs to in order to maintain/gain weight. Hopefully, the break this week will get him back on track.
Brandon had an appointment with his medical oncologist prior to chemo yesterday, and he reinforced what the surgical oncologist said about the CT scan results. Basically, nothing looks to have grown and some aspects look to be less in volume, so he doesn’t see any progression of disease. He said the main focus right now is for Brandon to gain some weight because he could begin to develop further complications from being underweight/malnourished. Since his appointment last week, Brandon has added some protein shakes to his daily diet. And he didn’t lose any weight in the last week, so that was a positive. The doctor urged him to increase his daily intake of the protein shakes and eat more small meals throughout the day. Brandon has finally found a protein shake he thinks he can tolerate, so we’re hopeful that he will be able to drink several more of those each day. With Brandon being sedentary most of the time, it was surprising to hear the doctor say his body is burning 2,000-3,000 calories a day fighting this disease .
Today didn’t start out so well. He did drink two shakes this morning, but he wasn’t able to keep them down. We’re hopeful that the post-chemo symptoms will subside soon and he will be able to not only take in more calories but actually keep them down. The doctor will see him again in three weeks and make the decision on putting him back on TPN (IV nutrition), depending on his weight at that time. Brandon really does not want to go back on TPN. Please say a prayer that he can gain some weight, which in turn should increase his energy levels.