Brody had a PET/CT and MRI on Wednesday at Nationwide Children's in Columbus, Ohio. Unfortunately, the results were NOT good. His tumor overall is about 10% larger. It's a very large tumor so this is considerable disease progression. It has gotten larger in both the abdominal cavity and within the spinal column/canal. It appears active especially around the periphery of the tumor and also within the spinal column/canal.
On a brighter note, the radiologist did state that fluid is present throughout bowel loops in the abdomen and obstruction was not suspected. The report also stated that there was minimal bowel distention. At least obstruction does not appear to be the major issue for now and the bowels are looking better. Brody has been putting more into his colostomy bag lately and putting less out through suction from his NG tube. So it appears that he is making some improvement in his gut motility/partial obstruction issues.
Amazingly, Brody has continued to feel okay despite the increase in his tumor size, so far. I am beyond thankful for this. I am also so scared of the pain that may soon be coming. The worry is most certainly keeping me up at night. I am especially worried about the tumor within the spinal column and canal. How will we control the nerve pain that is coming?! I am glad that we have a connection for a nerve block procedure but how long will he suffer before that can take place? (I think we need to line up more options that can happen immediately). And, if the tumor makes it's way into the thoracic cavity and starts causing major problems with breathing, how well can we control "air hunger." How much suffering is this? I know morphine is suppose to help lessen the feeling of "air hunger" but I also have been told it's a very bad way to go. What will happen as the pressure continues to increase throughout his body as this tumor just grows and grows? I am so afraid of the suffering!!! This whole situation is just utterly HORRIFIC!
Brody started with a fever Monday morning and I took him to Toledo Children's. He had blood and urine cultures performed and it turned out that he does have a urinary tract infection. He was started on IV antibiotics at home. We were glad that he was able to be treated at home rather than having to stay in the hospital this time for infection. He is responding to the antibiotics and has not had any fevers or other symptoms of infection recently. (He is still on the antibiotics for now though...for total of 10 days).
Brody had a follow-up at Toledo Children's today. His oncologist and I discussed the latest scan results and some thoughts regarding treatment moving forward. Our oncologist was extremely reluctant to consider putting Brody back on cyclophosphamide/topotecan again even though it did seem to stabilize Brody's tumor until we had to stop the regimen due to kidney function concerns. (This was the regimen he was on prior to starting the HSV trial which we entered after thinking he could no longer endure the cyclophosphamide/topotecan regimen). Brody's kidney function has been good now though ever since getting a nephrostomy tube rather than just the internal ureteral stent. I suspect his kidney could now handle the cyclophosphamide/topotecan regimen and that it may stabilize the tumor again. Our oncologist is worried about how rough this particular regimen may be for Brody to handle especially now with all he has been through recently. He is not as strong as he was when he endured this regimen before. He was also concerned about how many, many more days Brody would need to spend in the hospital rather than being at home if we go back to this regimen. He wants Brody to enjoy whatever days he has left and not cause more suffering. He does not seem convinced that the regimen will buy him much time. (I am not so sure about that....I wonder if maybe it might give him significantly more time. Also, sadly, Brody does kinda consider Toledo Children's like a second home. He has spent much of his life there and knows everybody there so well that his nurses and doctors and other patients are like a second family to him. Being at Toledo Children's where he's comfortable and loves all the people there is not exactly awful for him. He prefers to be home but he likes seeing his Toledo Children's family too. The cyclo/topo regimen can be done as an outpatient. He would spend most of a lot of days in the hospital for the treatment but he could go home at night. He would still get to see his dogs and other pets he loves so much in the evening and enjoy being home too. He is used to this life. It's normal for him. I don't think our oncologist realized that this isn't a major issue for us to decide against the cyclo/topo regimen. I did let him know how I felt about all of these issues). Our oncologist does not want to start a regimen yet that would suppress his immune system since he is battling the urinary tract infection. He wants Brody to finish the antibiotic first and be completely over the infection before we switch to anything else. He also wants more time to research a drug called Eribulin as a possible treatment option for Brody. It is a drug with a completely different mechanism of action than what Brody has ever tried before. It is normally used to treat metastatic breast cancer but more recently is being investigated as a treatment option in sarcomas. There is a phase 1 pediatric trail that is just being started (but not yet recruiting patients) using this medication in patients with recurrent or refractory solid tumors. There is some information available for pediatric dosing of this medication too. The drug works by inhibiting microtubules which are needed for cell division. Cancer cells divide much more frequently than healthy cells and so are effected more by the medication than healthy cells. An attractive feature for this option is the dosing schedule. The medication is typically given by IV injection over 2 to 5 minutes on day 1 and day 8 of a 21 day cycle. There are still numerous possible side effects with this medication though. But, generally every chemotherapy option Brody has taken has quite the list of side effects and generally speaking he does not experience all of them obviously. He has been luckily tolerable to most of the chemotherapy options he has used. Maybe he will be lucky with Eribulin too and not experience a lot of significant side effects with it either. You never know, maybe he might just do really great with it and have his tumor stabilize again with it. Anyhow, I am not sure which direction we will be headed next as far as chemotherapy options. We will have to make a decision sometime this next week as Brody finishes up his antibiotics.
I have been investigating a noninvasive means to debulk Brody's tumor with MRI Guided High Frequency Focused Ultrasound. It is a way to use ultrasound waves to ablate the tumor under MRI guidance. There would be no surgical incisions and should not cause significant pain nor damage to surrounding healthy tissues. The difficult part is finding a treatment center that can perform the procedure in the United States for a child with a lower abdominal soft tissue tumor/tumor in the spinal canal. There are options in other countries but the location and size of Brody's tumor may limit the ability to ablate very much of his tumor. Air pockets within the bowel can be problematic with focusing the ultrasound waves as precisely and I am having difficulty finding information on performing this type of procedure within or near the spinal canal. I have contacted the Foundation for Focused Ultrasound requesting more information but have not yet heard back from them. (This Foundation was formed to speed up the approval process of this technique by the FDA so that it can become more standard of care in the United States). The Foundation of Focused Ultrasound lists commercial treatment centers that offer the procedure for soft tissue sarcomas. Unfortunately, all of them are outside of the United States. I tried going to the websites listed for these treatment centers but they are all in foreign languages. I am need of translators so that I can contact the treatment centers to ask more questions. There is a clinical trial that is currently accepting pediatric patients available in the United States in Washington DC to use this technique to treat refractory or relapsed solid tumors with measurable target lesions that are located in bone or soft tissue in close proximity to bone. Rhabdomyosarcoma is listed as one of the included diagnoses. Brody's tumor is in close proximity to bone and he seems to meet the other listed criteria. BUT, he may have one of the exclusion criteria too. This exclusion criteria is stated as "Target < 1 cm from nerve plexus, spinal canal, bladder, bowel." Well, Brody's tumor is right up against all of these! I am wondering though if the "Target" in Brody's case could be parts of tumor that are at least 1 cm away from these areas and maybe this could be more of a debulking/palliative option for him rather than a curative option. I have emailed the contact listed for the study. We will just have to wait and see what they say.
For more information on MRI Guided High Frequency Focused Ultrasound, here is a link to a TED talk on this very promising procedure. It could drastically change the lives of so many people. It's very exciting stuff!!! The video starts off a little slow and boring but give it a chance, it's neat stuff and the video gets more interesting as it goes along.
Also, here is the link to the Focused Ultrasound Foundation. They have lots of information on this option.
Brody, as usual, has continued to amaze me. He is still a very happy boy and enjoying life. He has been through so many horrendous things and is still going through so much. But he doesn't let it get him down. He just adjusts and moves on with living life. He rarely ever complains or whines about any of the stuff he is facing. He is the strongest, bravest little boy! I love him forever and ever and ever!
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