We Got Bad News on Brody's PET/CT and MRI This Week...Brody is battling urinary tract infection....Brody is still happy and feeling good most of the time despite all the craziness he has been and is going through

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. 

 https://www.ted.com/talks/yoav_medan_ultrasound_surgery_healing_without_cuts?language=en

Also, here is the link to the Focused Ultrasound Foundation.  They have lots of information on this option.

http://www.fusfoundation.org/

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!

Back Home Again

Brody enjoyed a few days at home after our long stay at Nationwide Children's.   He was busy playing with his dogs,  his buddy Lucy,  and his brothers.   He finally got to celebrate the fourth of July on Saturday night and set off some of the fireworks he had bought for the occasion.   He was having an awesome time and overall was feeling very good.  

Our friends Tom and Carolynn Corthell helped a lot with getting Brody home from Nationwide Children's.  They waited for all the medical supplies that were arriving at our house that day before we got home.   Carolynn was busy cleaning things again for us too.   It was very nice to come home to a clean house and Brody's hospital bed was already set up and made just where we wanted it.   Carolynn surprised Brody with a giraffe dream lite.   He loves giraffes and dream lites.   So totally perfect!  

Unfortunately, Sunday afternoon he started to experience a lot of belly pain that was progressively getting worse and worse despite the pain medication we were giving him.   He started vomiting and dry heaving a bunch too.   We ended up taking Brody to Toledo Children's Hospital on Sunday evening.   (Jaden and Geordi stayed the night at the Roush's house so that Bill and I could both be with Brody that night.   Thank you Roush family!  We needed both of us to get him to the hospital... one of us to drive while the other held a basin for Brody as he kept vomiting and also fixing a defective NG tube drainage bag).  

The team at Toledo Children's were waiting for us when we arrived and acted very quickly to get Brody comfortable fast.   He got morphine,  hefty dose of zofran,  some ativan,  and hooked up to suction right away.   After all that he was feeling much better and has continued to feel good.   The social worker at Toledo Children's started working on getting Brody a NG suction device for home early Monday morning.   It was difficult finding a place that could supply it.  (The discharge planner we had in Columbus was not able to find one for us and instead we were told to manually suction the NG every few hours.... this just isn't enough in Brody's case).  I was about to just buy one and have it shipped.   They're expensive though.   Fortunately,  the social worker at Toledo Children's came through and found a place we could rent it from and got it approved through our insurance.   It all finally got arranged today.  This helps immensely with the belly pain,  belly distention,  and allows us to actually get some sleep too.  We have our precious in home NG suction device and we are so incredibly thankful for it.  

Brody's meds to control pain and nausea at home were converted to all IV meds rather than some of them being given through his NJ tube.   He was also given stronger pain medications.   This has helped tremendously with keeping Brody happy and comfortable at home.  

After spending another 3 nights in the hospital we are all happy to be back home again.   Brody got home around 3pm today and his NG suction device and new IV medications arrived shortly after.  

Brody enjoyed a brief outing after we got home to a local hair salon (Villagio).   He got his hair washed there today.   With his port accessed,  the nephrostomy tube,  NJ tube,  NG tube,  and colostomy bag.... he cannot take a regular shower.   He has to do sponge baths.   It's difficult to find a comfortable way to get his hair washed at our house.   He greatly enjoyed getting his hair washed at the salon.   His friend,  Lucy,  went with us too.  Brody was having a great time just talking and hanging out  with his friend while waiting for his hair wash.   The owner at Villagio refused to let me pay for him getting his hair washed and got us scheduled so we can plan to come back on Tuesdays and Fridays to get his hair washed.   Pretty cool!!  Plus it's only about a mile or two from our house.

First day back to school is tomorrow morning (Thursday morning).   Geordi will be starting 6th grade at Fallen Timbers Middle School.   He loves school and is excited to be headed back tomorrow.   Jaden is entering 4th grade and Brody is starting 3rd grade.   Jaden and Brody will be doing school at home with mom and dad starting tomorrow.   Obviously,  the amount Brody does is dependent both on how he feels and his interest in doing so.   Jaden will be kept busy,  busy,  busy learning at home with breaks to play with Brody.   Jaden doesn't mind regular school but wants to stay home with Brody so he can spend more time with him.  

Well.... better get some shut eye so I am rested up for our first day of school.  

Brody is Home

We are happy to be home....

We came home on Thursday. The Discharge planner at Nationwide Children's was able to arrange with the help of the team at Toledo Children's hospital everything we needed to come home. Including Brody's pain medicine (has to be administered by IV)-- we have a hospital bed, infusion pumps for IV's and NJ feeding-- and lots and lots of supplies for doing port flushes, dressing changes, etc...

Our friends Carolyn and Tom hung out at our house on Thursday when everything was being delivered-- giant thanks.

Brody ended up coming home in our car vs ambulance-- There apparently was not a protocol for administering Brody's pain med in an ambulance and we did NOT want to give him morphine (and slow down his gut any)-- so Brody chose to ride home in the van. I couldn't get him to look up long enough for a pic (he was playing on his tablet) but did good on the way home but started having some pain when were were about 20 minutes out. He persevered and we were able to give him some pain medicine as soon as he got home (was waiting for us)-- as well as a nurse to show us how to operate everything-- fortunately the infusion pumps are pre-programmed and very user friendly.

We went in to Toledo hospital for an exam, labs, and to get a few odds and ends supplies we were missing and needed on Friday but mainly we have been trying to get used to his care routine.... we have a very strict schedule we have to maintain. For both of us nothing we have to do isn't anything we haven't seen done hundreds of times--sterilizing & flushing his IV (Port) access points but it is very different doing than watching. So far so good.

Trish has done an excellent job of organizing all or our supplies and we worked out a med schedule that so far has worked for us but that we may have to tweak a little bit.

I would love to write more but I am letting Trish catch up on some sleep and it is getting close to the time we have to switch from Brody's TPN to his IV fluids (we were told that for his next batch of TPN they will just combine the fluids with the TPN so they run together and for a longer period of time so we won't have to switch them)

More later

Watch "Brody enjoying the swings at hospital park" on YouTube

Brody enjoying the swings at hospital park: http://youtu.be/Rlb1jqOkz5c

Brody enjoying a visit from Abby (Grandma and Papaw's) dog in park in front of the hospital

Brody was very happy to get outside for a visit with Abby,  Papaw,  and Grandma.   It was the fist time in more than 5 weeks that he has got to go outside and of course it's much better with one of his dog buddies to hang with too.  

Thank You!!

We received a very big surprise when picking Geordi up from Boy Scouts camp.   Our Scout Families (Boy Scouts and Cub Scouts) all pulled together to give us a large and much appreciated gift.  We received a gift bag full of gift cards for Kroger, gas stations, restaurants, and prepaid Visa/Mastercards.  Brody also got a penguin dream lite.  He LOVES dream lites.  He had a dog one that he would sleep with every night that broke recently.  He was excited to get a new dream lite.  We have such a wonderfully supportive community, friends and family.  We are so thankful for each and every one of you.  The gift cards have helped relieve financial worries and it just warms our hearts to know there are so many people out there praying for us and wanting to do anything they can to help.  It's certainly more expensive being out of our hometown and our income is much less than usual now too.  The gift cards are greatly appreciated and we consider ourselves blessed indeed. 

Brody is Not Getting Nerve Block/His Pain Has Improved/Working on Getting Home

Brody has been feeling much better the last few days.  His pain episodes are decreasing in frequency and severity.  They are far more frequent when he is awake vs. when he's asleep.  He seems to be able to stay asleep without pain waking him.  We are unsure why it's so much more frequent when he is awake.  My theory is that when he is awake he starts to feel the pain come on and this makes him anxious and exacerbates that pain into a much more painful situation.  So far, Ativan has been working the best to lessen his pain.  This medication is an anxiolytic.  He is taking it every 4 hours now and seems to be doing much better having this medication given regularly. 

We have decided not to do the nerve block for Brody this week.  The nerve block would be another surgical procedure for Brody and with it's own set of risks.   The decreased gut motility from the procedure is a concern too.  Brody's gut motility seems to be improving a bit the last few days.   We are concerned that another procedure may set him back in this regard.  Also, the anesthesiologist has concerns that the block may not block the pain he has been experiencing. 

The surgeon reviewed Brody's latest CT scan.  She feels Brody is experiencing both a partial obstruction and severely decreased gut motility.  She explained surgical options to relieve the obstruction and also to free Brody of his NJ and NG tubes.   The surgery option would require another ostomy (an ileostomy) and also a G Tube.  The surgery would likely not fix the gut motility issues.  We decided not to pursue the surgery options at this point.  It would be a lot for Brody to go through right now and he may really be experiencing much more problems from very slow gut motility rather than the partial obstruction. 

Brody's pain medication was changed from morphine to Nubain on Saturday.  He seems to be doing better since making this change.   The Nubain does not delay gut motility like morphine does.   We are unsure how much the Nubain (or the morphine) really does to relieve Brody's pain.  Brody told me today that it doesn't make the pain stop but makes him feel more calm about it.  I plan to let his doctor know this in the morning.  It may be better to increase the Ativan dose rather than continue the Nubain. 

Our primary goal before leaving the hospital was to get Brody's pain under control.  On Friday, we certainly felt that Brody's pain was far from in control.  Saturday was a very painful day for Brody too.  Until today, we had planned to give the nerve block a try.  We had decided to stay at Nationwide Children's until the nerve block could be done.  Now that we will not be doing this procedure this week, we are working towards getting Brody home as soon as possible.  The AIM(Advanced Illness Management)  team is working on setting up care options for Brody at home.  At this point, we are not sure if we will be able to do everything at home but we are trying to do whatever we can to get him home.  (If he can't be at home yet/can't be cared for at home, then we will transfer back to Toledo Hospital). 

It may be a few days to coordinate things to get Brody back to Toledo.  In the meantime, the AIM team is checking to see if there is a way that we can let Brody go outside in a wheelchair and visit his dogs in the park out in front of the hospital.  We are hoping that this will be okay and hope to hear the verdict on this in the morning.  Brody misses Chewy and Tori so much.  He wants to pet and play with them and try out the swings in the park too.  If he is able to have a visit from his dogs, we would love to have some volunteers to bring Chewy and Tori down for a visit.  Anybody interested in this, please let me know. 

 

Thanks again everybody for your continued prayers and support. 

Update

Brody has continued to experience on and off belly pain with varying severity and frequency.  He sometimes can go long periods of time (hours) without any episodes and then other times as soon as one episode ends a few minutes later another starts.  He has both an NG tube and an NJ tube still.  The NG tube is hooked up to suction to help lessen bowel distention.  A big question that still needs answered is whether the gut not moving due to an ileus (gut simply not contracting as it should) or if it's an obstruction that is preventing movement through the GI tract.  If it's an obstruction, it would need to be determined exactly where and what is causing the obstruction and then determine if it can be corrected surgically.  The surgeon came and spoke to us briefly to let us know that Brody needs to have a CT scan done today with oral contrast so that they can get pictures of good enough qualitly to determine exactly what is happening.  Everyone was hoping that he was experiencing a temporary ileus that would correct itself but so far this just does not appear to be the case.  It's possible that there may not be an actual obstruction and that he has chronic gut motility problems.  This is, of course, a very difficult situation too.  Neither scenario is good one.  We will know more about what options we may have to handle Brody's belly pains after the CT scan. 

 

On a brighter note, Brody's back and leg pain have remained much improved.  He does still have these pains but not as frequent nor severe as they once were.  He has started to complain more about pain in his left foot now too though.  We will be talking to the AIM team about this.  He also has started to have pain in his right foot when walking or standing.  (the right foot is his good foot). 

 

The AIM team has been talking with the surgeon and is waiting on the evaluation of the surgeon and reviewing MRI and scans further before deciding how best to proceed concerning any nerve block options to treat Brody's pain.  We are glad that there are various nerve block options that could stop his pain.  Just knowing that this pain will not just keep continuing on indefinetly is a great comfort.  It's extremely frustrating having to wait to do something that could just stop the pain.  But for now, we do have to wait so that best means of doing so can be determined. 

 

Brody is not yet feeling well enough to come home.  The culprit of his belly pains needs to be determined and his pain needs controlled far better before we can come home.  He will be able to come home on either TPN or NJ feeds whatever the case ends up being for this.  The AIM team and discharge planners here have started to make contact and set-up care options for Brody's eventual return home.  We don't know right now how much longer he will be in the hosptial at this point but we are trying to get things lined up as much as possible to be able to get home when we can. 

 

Brody has been taking Votrient to treat his tumor for the past week.  He has to take this by mouth.  We are unsure of how much of this medication he is actually able to absorb due to all of his gut motility issues.  We are hoping he is able to absorb most of it and that it's actually working to slow the growth of his tumor.  We will not know really how effective or ineffective the Votrient has been until he has scans done.  (Maybe we will have a bit of an idea from the CT scan he is getting done today.   He has only been on it for a week though.  It may be too soon to tell).  If Brody needs surgery he will need to wait at least 2 weeks or more before most other chemo options could be added.  He will likely have to stop the Votrient for surgery too if he needs surgery again. 

 

We still have many unanswered questions right now and answers to these will help dertemine next steps.  We do not know what to expect in the next coming weeks right now.  We do know we have some very difficult and nearly impossible decisions to make coming our way.  I will not get into all of these questions racing through our minds right now.  They are not questions anyone wants to ever think about asking regarding their child.   I will try and update more on these once we have the CT scan results. 

 

Brody greatly enjoyed a couple visits yesterday and Wednesday from the Musil family.   The Musil's are wonderful family friends.  Amy Musil was our boys' babysitter before moving to Lima to open her own diner (Lulu's diner in Lima, Ohio.....a great place to eat with great owners too).  She has three boys (Austin, Ashton, and Aiden) roughly the same ages as our three.  They all have a blast everytime they get together.  They can go for long periods of time without seeing each other (now that we don't live so close to one another anymore) and yet they are still the greatest of friends.  Bill and I absolutely enjoy seeing all the boys Amy, and Justin (Judd) too.  Brody was so happy to get to see them again.  It had been awhile since our last get together.  The Musil's stayed at a hotel nearby and took Jaden with them for the night to go swimming in the hotel pool and then to Cosi the next day (yesterday).  Jaden had a lot of fun, of course.  And, we are glad Jaden got to enjoy such a fun escape from the hosptial for a bit.  Jaden is very reluctant to leave Brody's side.  He always wants to be right here with him and know what's up all the time.  He's a concerned and loving big brother.  It takes quite the enticement to convince Jaden to take a break from the hospital.  We are glad he got this much needed break and had so much fun with his friends.  Brody has been enjoying playing with gifts the Musil's brought him too. 

 

We have several friends in Toledo still continuing to take care of our "mini-zoo" and the house.   Our little Chewy (yorkie) has not been the best behaved dog while we have been away.  He has taken to peeing and pooping all over our house.  Our friends Barbie and Carolynn have been trying to keep this cleaned up.  Carolynn has been busy cleaning all the carpets in our house and has had to redo areas.  Yesterday, she decided to do some handy work to our dog door opening and fixed things so that Chewy can come inside the house to get out of the weather and get to his food and water bowls and his bed but he is not able to get into the rest of the house.  Our other dog, Tori, will not be able to come in this way anymore and will instead need to come into the garage. Hopefully, this will cut down on messes to clean up at our house.  We are so lucky to have such amazing friends doing such an awesome job taking care of things at home for us.  We have been away for a very long time and we greatly appreciate all the help. 

Geordi is finishing up Boy Scouts camp.  He will be done with camp tomorrow morning.  We have all missed him and are very much looking forward to seeing Geordi again.  Friends of ours sent us pics of Geordi and his friends having a good time at camp.  We haven't been able to talk to him since he has been at camp but I am sure he had a lot of fun.  (No cell phones etc allowed at camp).  There was a parent's night Wednesday night though and some of the parents sent us some pics of the boys having fun.  Geordi may even by arriving by airplane tomorrow.  The dad (Rich Naves) of one of Geordi's best buddies is an instructor for the Toledo Aviation Program (Really, our enitre family and the Naves family are all great friends of each other) .  Anyhow, Geordi may be flying down to us.  How cool is that!!

 

Well, Brody will be heading down for his CT scan shortly.   More updates to come once we know more.

 

Thanks everyone for all the support and prayers through this very difficult journey.