Brody doing well so far with chemo and gets to do it outpatient now instead of inpatient

Brody is still sore from his surgery yesterday but he is steadily improving on the pain front.   He still does not want to move very much right now but he does at least believe us that if he keeps trying to move even if it hurts that he will start to feel less pain sooner.   He is moving much better than last night and the more he moves the easier and easier it is becoming for him.  

Brody did well with his chemo last night.   He had a little mild nausea and he has been very tired but other than that he has been doing pretty good so far.   And since he is doing well,  after he finishes his chemo today he gets to go home (YAY!).   He will come back to hospital each day for his chemo infusions but will get to go back home after they are done each time.  

Brody had a PET scan today too.   We don't know the results yet.   A copy is also being sent to Dr.  Wexler in New York City. 

Brody enjoying popsicle soon after waking up following his surgery today

Brody Had Surgery This Morning and Started Chemo This Evening

The last few days have been very busy indeed.  Yesterday morning Brody had an MRI of his abdomen.  It was ordered to evaluate if his tumor was pressing against blood vessels in his abdomen and preventing proper blood flow in his left leg.  His left leg swelling had gotten worse over the weekend and so we brought him in for the MRI.  Results showed that he has good blood flow into his left leg but the return blood flow back out of his left leg was almost entirely occluded by the tumor in his abdomen.   So anyhow, the blood flowing into his left leg is much faster than the blood flow back out of the leg.  Fortunately, Brody has grown some "collaterals" (smaller newly grown blood vessels that are bypassing the occluded route; basically Brody's body grew blood vessels to create it's on bypass system) which are helping to keep the situation less severe than it would be otherwise.  The "collaterals" are not nearly as efficient though at returning the blood back to his heart and so his left leg is still significantly swollen.  Somehow, Brody has not had a whole lot of pain from this.  His leg is mildly painful and itchy from the swelling. 

Right now it is very important for Brody to be able to keep the ability to grow this new blood vessels and create his own bypass system.  This means that Brody can not participate in the clnical trial that has the drug I was so worried about him receiving anyway because it works by blocking formation of new blood vessels.  Blocking formation of new blood vessels is a mechanism that makes sense to stop the tumor from growing, but it also meant that he would not be able to have surgery until he had been off the drug for at least 4 weeks and then he would not be able to go back on it again until at least 4 weeks after surgery.  Anyhow with this new development, Brodys' doctor is not going to start Brody on this chemo regimen and instead we are starting Vincristine and Irinotecan.  We can not delay starting chemo any longer while waiting to hear from Sloan-Kettering as to whether they would be able to do surgery to remove the tumor.  The tumor is growing too fast to wait.    So we have started the Vincristine & Irinotecan Window therapy I described a couple posts ago.  The hope that these medications will start shrinking the tumor or at least prevent it from getting larger while we still are waiting to talk to the surgeon in New York City.  Brody will not have to be off these medications for long period before being able to schedule surgery.  As soon as Brody is healthy enough to travel we will finally be able to get our much needed appointment in New York City.  Brody's chances of beating this are better if he can have his surgery sooner rather than later.  So we will still be headed to New York City whenever Brody is healthy enough to make the trip. 

Brody had surgery this morning to place his port (his chemo is delivered through this) and also for a bone marrow aspiration (checking the bone marrow for cancer cells).   Brody is very sore from the surgery and is not wanting to move very much at all.  Bill and I were working very hard this evening on trying to get him to move as much as possible and trying to make him understand that the longer he laid still the more sore and difficult it would be to get moving again.  Brody has a very high pain tolerance.  He does not flinch or complain about many things most kids (and many adults too) would absolutely be screaming about.  Anyhow, it was soooo hard to see him in pain like this.  He was trying to be so patient too and holding in the cries while waiting on his pain meds that were coming so slowly.  But eventually he just couldn't bare it anymore and the tears were coming.  The pain did seem to be easing off significantly when I left this evening though.  (Bill is staying with Brody tonight and I just got home with his brothers a little bit ago).  Brody also just got started on his chemo regimen a few hours before I left the hospital.  When I left he was tolerating it just fine.  No problems were observed yet. Who knows how tonight will go.  Let's pray it's an uneventful night.  Brody has taken Vincristine before and tolerated it ok in the past.  He has not had the Irinotecan before.  Both drugs can cause many, many side effecs.  The most troublesome one for Brody last time with Vincristine was nerve pain.  Irinotecan is known for causing severe diarrhea (and at times fatal diarrhea).  Many precautions are lined up to prevent and manage the diarrhea that will likely be coming from the Irinotecan. 

Tomorrow Brody will be headed to get his PET scan.  They will be checking his entire body for metastases.  I will be headed back to the hospital tomorrow morning after getting Jaden on Geordi on the bus.  Brody wanted his brothers to be able to spend the night with him at the hosptial this evening but unfortunately only parents are allowed to stay with him.  He is also quite bummed that his brothers will be at school during the day rather than with him tomorrow.  Not many days of school left though and we will be sure to get his brothers over to see Brody as soon as they are home from school each day.  Brody will be in the hospital until Sunday.  He will get to come home Sunday night and then he has to go back in next Monday for the day for more chemo.  But he should be back home Monday night and be able to stay home for a week then before going back.  We are not sure what will follow the "Window" therapy yet.  We're hoping surgery followed by more chemo and then maintenance therapy and hopefully never see sight of a relapse again.  Right now we have to take it one day at a time though. 

Thanks everyone for all the prayers, kind words and support. 

Back from Great Wolf Lodge (waterpark)

We all had a good time this weekend. We stayed at Great Wolf Lodge in Sandusky Ohio (about 90 minutes from our house)--
http://www.greatwolf.com/sandusky/waterpark

it has a pretty good indoor waterpark. It's not as good as nor as big as Kalahari (also in Sandusky) that the boys went to in March for Jadens Birthday but they still had a blast. Lines were pretty short and there is a decent variety of water slides-- including a dark tunnel one that the they ended up liking after finally trying it out. Brody's leg and belly (he has had occasional belly aches usually coinciding with bowel movements) did not bother him this weekend-- he looks to be favoring the leg a little but he said it didn't hurt and we had to constantly tell him to not run (all we need is him doing a face plant on some concrete). We got there about 1 pm on Saturday, we did take a break for dinner but did the water park til it closed at 9 pm. Then got down there this morning at about 9:30 and stayed til 3:30 pm.

The boys (but especially Brody) pretty much wore us out.... I'm sure they are sleeping well tonight.

More later....

Change of Plans

Brody had an MRI today of his head.  It came back all clear.  YAY!  We were expecting to start Brody on chemo on Monday but looks like we are likely going to have to wait a little longer.   This wait is killing me.  Brody's doctor here in Toledo said that he spoke with Dr. Wexler on Thursday evening and that they plan to get us scheduled to meet with Dr. Wexler and Dr. LaQuaglia (great surgeon for pediatric abdominal surgeries) at Sloan-Kettering in New York City next Thursday.   The rest of the medical records they need at Sloan-Kettering are due to arrive there on Monday.  Then the team there will need to review everything and contact us to schedule an appointment.  They told our doctor they will likely see us on Thursday and they are looking at the possibility of doing surgery to remove Brody's tumor sooner rather than later.  This part is wonderful news.  I truely hope there is a way that Dr. LaQuaglia sees to schedule the surgery much sooner than would be done by surgeons here in Toledo.   Right now it appears that Brody's recurrence is a localized tumor in the same location as his original tumor.  Obviously, I want the surgery to happen before the cancer is spreading elsewhere (and I am also worried that maybe the tumor won't be very responsive to chemo and it grows larger and the surgery could become impossible).  I very strongly feel that Brody's best chance of survival depends on surgery occuring as soon as it can happen even if it is a more "aggressive" surgery than waiting until the tumor can be shrunk with chemo.  Also, today we were told that a trial that Dr. Wexler has several patients in with embryonal rhabdomyosarcoma is achieving very similar results to some of the standard chemo therapy options we were considering starting on Monday.  I would love to be able to go ahead and just start Brody in this trial so we can start treating him and hopefully begin shrinking the size of the tumor while we are waiting to see Dr. LaQuaglia.  Unfortunately, one of the medications in the regimen would require that Brody be off of it for at least 4 weeks before he could have his surgery and then he would have to wait another 4 weeks before he could go back on the medication.  Considering that it only took his tumor about 8 weeks to get to the size that it is now, that seems too long of a break in chemo to me.  If our doctor were to start chemo with Brody this is the regimen he would want to start because it is receiving similar response rates as standard therapy but with a lot less toxicity and greater tolerability for the patient.  Obviously, I do want Brody to have a regimen that would be more tolerable and less toxic if expecting similar response.  But other regimens we could start would not require such a large break in chemo to accomodate being able to have his very much needed surgery as soon as possible.  I understand our doctor's rationale and I think it's certainly reasonable.  But I have to trust my Mom instincts that Brody needs surgery as soon as it can happen and that I don't think he can afford to be off chemo for 8 weeks.  Unfortunately, our oncologist is not in agreement with me at this point and since we do not agree, now Brody can't start chemo on Monday and we have to wait until we see Dr. Wexler and Dr. LaQuaglia before any actual treament can begin.  We are scheduled to see Brody's oncologist again on Monday for a follow-up and surgery will happen early next week to place his port, collect a biopsy ,  and bone marrow aspiration.  His doctor here as been checking and feeling the tumor each time he has seen Brody this week to assess if tumor is staying about the same size.  He tells us that the size seems to be about the same since Monday (although I am worried that this is not true since Brody is having pain now in his left leg and he was not earlier in the week).  His doctor will feel the tumor again on Monday and will see if Brody is having any further worsening of his leg pain or not.  If not, the plan is to wait to start treatment for Brody until after we travel to New York City for consult.  But if Brody starts to worsen then we will start chemo (but not sure what) within 24 hours.  Again the wait to just get started is agonizing.  Everyday counts.  The tumor is not getting any smaller while we are waiting and waiting.  I will of course be contacting Sloan-Kettering on Monday morning and pleading with them to please do whatever they can to get us in there as soon as possible and hopefully earlier than Thursday.  Wish me luck with that one. 

Today we had planned to head out to the African Wildlife Safari when Brody was done at the hospital.  Unfortunately, the weather did not alow that to happen today.  Torrential rains during the time we had to go.  We did go see Avengers this evening in the theater.   We all really enjoyed it.  Brody has now become an even bigger Hulk fan.  Geordi and Jaden like Captain America the best of all the Avengers.  We are all looking forward to a trip to Great Wolf Lodge tomorrow. 

Brody and Geordi on a rollercoaster a couple weeks ago.

https://www.youtube.com/watch?v=k8CdyBcKx-Q&feature=youtube_gdata_player

Brody has started to have pain in his left leg

My heart sank this morning when dropping Brody off to school for what may be his last day of Kindergarten.  At first because I was thinking this may be his last day.  Then, I was saddened even more when I saw him limping and grabbing his left leg as he was trying to run to keep up with his brothers.  We saw Brody go through this as his tumor grew the last time.  As soon as I saw this I was definitely thinking, "Oh no!  The tumor is growing so fast already that it's pressing against that nerve again."   Brody was still limping after school and he says it hurts to run and when his teacher asks him to sit "criss-cross applesauce."  I have just been sick to my stomach all day.  I can't believe how fast the tumor is growing.  So scared. 

I was really hoping that we would be able to consult with Dr. Wexler before Brody is scheduled to start treatment on Monday.  Unfortunately, not all of his scans, tests, pathology reports etc. etc. etc.  had been received yet by Dr. Wexler in New York City from our hospital here in Toledo.   Dr. Wexler will not consult with us/provide us with his treatment recommendation until after he has received all of the tests etc he requested and then they must be reviewed by the team in New York City which takes a couple of days once they have everything.  Then finally they will contact us to schedule an in-person appointment.  If we were to wait to start treatment for Brody until after consulting with Dr. Wexler, it would delay Brody starting therapy another week at least. 

After seeing Brody already progressing to having difficulty walking and not being able to run, my gut is absolutely screaming that there is no way we can delay treatment.  We will proceed with starting treatment for Brody on Monday.  We will most likely be starting a "window" treatment of irinotecan plus vincristine (will find out for sure after Brody's MRI of his head results are back.  He is having MRI on Friday morning to verify no tumors in the head).    Brody took vincristine to treat his initial tumor.  Irinotecan will be new for him.   He tolerated the vincristine ok last time although the neuropathy was problematic but manageable.  Irinotecan has many side effects but probably the most pronounced is severe diarrhea.     A "window" treatment is a short duration of chemo to be used before the longer ongoing regimen that will follow.  Brody will likely receive the irinotecan daily for 5 days the first week and he will receive Vincristine once a week (on Mondays).  The second week would be Vincristine on Monday and no irinotecan during second week.  This 2 week cycle would repeat 3 times for a total of 6 weeks of "window" treament.   My plan is that during one of the weeks that Brody is not getting the irinotecan, we will travel to New York City to meet with Dr. Wexler for second opinion as to the next steps for Brody following the "window" treatment.  This plan was discussed between myself and Brody's oncologist here in Toledo today.  Brody's oncologist stated that he would call Dr. Wexler today (Thursday) and ask some further questions before committing to this as overall plan (Dr Wexler has been answering our doctor's specific questions but is not coming right out and saying, "do this).  Our doctor stated that he will give us the plan after Brody's MRI tomorrow (Friday).  So far as I know right now, the above described is our plan but could find out tomorrow it will be something different.  But it is firm that Brody will start treatment Monday.  He will have surgery to get his "port" placed again and start chemo on Monday. 

After school today, Brody had fun playing video games with his brothers.  He was getting frustrated trying to play with his brothers outside.  He was not able to run without it hurting and was walking with a significant limp.  He was just having a hard time trying to keep up with his brothers.  Fortunately, riding his big wheel was not hurting him and so he enjoyed that for quite some time.  He also came and hung out with me on our big bench swing and also had me giving him several "under dogs" on the play set as well.  While Brody and I were chillin' together today on the play set though he asked me something that I just did not know how to respond to and I wish I would have had something more brilliant to say in return.  But I still don't really know what would be best to say.   He asked me, "Mommy, if I die, can you die too so you can be with me?"  I started crying immediately.  Totally lost it.  I have been trying sooooo hard to NOT cry around Brody or his brothers and put on a brave front.  Once I stopped crying, I said, "Brody you're not going to die. Mommy is so sad that you have to fight cancer again.  It's a very hard fight but you are so strong and tough, you will beat it again."    Then he said to me, "But Mommy, it's in my leg already.  My leg hurts, it's already in my leg too."  Again, I CRIED!  Then I calmed down and said, "I hate that you hurt; it makes Mommy so sad.  When I am sad it's hard not to cry.  But Brody please don't worry about your leg.  The cancer is not in your leg. It's the tumor in your belly pressing against nerves that run to your leg.  This happened to you last time too.  But then you finally got enough medicine to shrink the tumor and your leg got better.  You are going to the hospital on Monday to start taking medicine to shrink the tumor.  The medicine will probably make you feel very sick for awhile but it will shrink your tumor.  When it's a little smaller, you will get surgery to get the tumor out.  Then they will give you more yucky, make you feel sick medicine for awhile after that to make sure no more tumor comes back."   He smiled and me and my sweet little boy cuddled and enjoyed each other's embrace.  Later in the evening  Brody was talking to his Dad though and I guess I didn't explain very well the first time that the cancer wasn't in his leg.  He told his Dad the cancer was in his leg.  Again I tried to explain it almost the same way.  And, Brody says, "what are nerves, Mommy?"   Then I'm thinking, "yes, a six year old really wouldn't know what nerves are yet, I guess."  So I explained this.  A few minutes later Brody was talking to his Papaw on the phone  and I heard him telling him, "I'm doing ok, it's just my nerves are messing with my leg."   I started laughing and said, "oh Brody, you are sooo cute."  

Since we got a weekend off before Brody starts treatment on Monday, we have planned some fun adventures for the weekend.  Tomorrow(Friday) after Brody's MRI, we are going to take Brody, his brothers (gonna pick them up early from school), and Lucy (our neighbor and Brody's best buddy) to African Wildlife Safari so Brody can feed the giraffes (one of his favorite things to do).  Then we plan to all go watch the move, "Avengers."  On Saturday we are headed to Great Wolf Lodge. We will play there all day on Saturday, spend the night and play there some more Sunday morning and head back home Sunday afternoon. 

Well, it is getting quite late.  I better at least attempt to sleep (extremely difficult for me lately) so that I will be rested for a weekend of fun.   

I can only echo what Trish wrote about how we feel. I hardly slept at all on Monday night (I maybe got 2 hours of sleep total-- it seems I was up the entire night with thoughts running through my head) and I can usually sleep no matter what. I am still in shock. We are all dealing with this a well as possible. While Monday was horrible with the news-- Tuesday was much better. We kept Brody home from school tuesday as we had to collect his urine for 24 hours for a Creatinine Clearance test (don't ask me exactly what it is, only that it is to measure his kidney function)-- So Brody and dad got to hang out all day-- he made me play video games most of the morning (and pulled me through alot of the levels in Toystory 3 on our Playstation 3)-- I finally got him off the couch and we went to McDonalds for lunch the park and played for a couple of hours. Trish showed up about 2:30 or so and we played a bit longer til we had to go home and get Geordi and Jaden off the bus-- we went back to the park later so Brody could show his brothers how he could make it across the monkey bars by himself (most of the time)....  Brody is feeling well right now-- and we are enjoying just spending time with him, he is such a blast to be around. When he resumes his treatment he isn't going to be feeling as well (at least some of the time).

I can't explain how feel at this time-- I am dealing with this as well as I possibly can and am trying to be a rock for the family. I really don't want to talk about it much at this time as it is painful to me to just tell people the news.... But I don't want to anyone to think that I am depressed or anything---I can't help but be happy when I am with Brody.

Trish has been pouring over studies and treatments that I couldn't begin to understand .... as you can imagine after reading Trish's post we are exploring all options to try and improve Brody's outcome.

We plan on having as much fun as possible this weekend--- We plan on seeing the Avengers (we recently watched the Captain America, Incredible Hulk, and Thor--we had seen Ironman 1 & 2 a while ago) this weekend and maybe a waterpark.

Trish is taking time off her job. I plan on continuing to work my normal shift rotation like I did last time with some modifications as necessary as the needs arise based on Brody's treatment-- My employer has said they will work with me as necessary. Which obviously makes it easier on us and for this I am very thankful..... if anyone is interested this is where I work.... http://www.northstarbluescope.com/ (I've been here 15 years-- I can hardly believe that!!)

Well I think that is all I have to put up right now-- we will obviously be keeping this updated. Thanks to everyone that has followed this and it does give us some comfort knowing that we are in people's thoughts and prayers.....

Bill

Here We Go Again

Brody had a CT Scan on Monday,  April 30th.   We got the devastating news shortly after that Brody's cancer has returned.   Recurrent rhabdomyosarcoma has extremely poor prognosis.   Brody had very aggressive treatment with his initial diagnosis.   The current standard treatments for recurrent rhabdomyosarcoma have outcomes of less than 50% survival at one year from relapse and less than 10% at five years.   We have decided we must consider investigational options.   I have been very busy researching any possible treatment options available and deciding pros and cons of each.   I feel I have a decent understanding of available options at this point.   My next step is to call to schedule Brody to be seen at Memorial Sloan Kettering hospital in New York City.   Dr. Wexler at this hospital is recognized as an expert on rhabdomyosarcoma and especially recurrent rhabdomyosarcoma.   I definitely want his input and second opinion on how best to proceed for Brody.    As far as we know at this point,  Brody's has one localized tumor that is 5 x 3cm and is in the same location as his original tumor.   For comparison,  his tumor was much larger than this when he was initially diagnosed.   His original tumor had to be shrunk with chemo before it could be surgically removed.   Just before this surgery his tumor was 4 x 3cm.   So right now,  his tumor is a little bigger than it was last time before they removed it surgically.  We have not been able to find a surgeon in Toledo yet that is willing to do surgery yet to remove the new tumor.   Studies show surgery and even aggressive surgery is extremely important for his chance of survival.   The surgeons at Memorial Sloan Kettering hospital will be reviewing Brody's case to see if they would be able to operate.     Brody is scheduled to start treatments on Monday.   Dr.  Wexler and Dr. Strunk (our oncologist here in Toledo) are communicating back and forth via phone calls and email regarding next steps for Brody.    Treatment cannot be delayed until after we can be seen in New York City.   His tumor is very rapidly growing (it was not at all visible at his last scan on Jan 25th).   The initial treatment has not yet been decided but of course will be before Monday.   As part of starting treatment,  Brody will be having surgery Monday to have a port placed again for him to receive his treatments through.   I am still in such disbelief that this is happening.   I am soooo angry!  So powerless to stop this.   Why!?  Why!?  Why!?  CANCER SUCKS!
Sorry to my friends and family that have been calling to talk to us about how things are going.   I have not been emotionally stable enough to answer my phone.   I can't talk about all this stuff yet without crying.   I can't even speak when I do start crying.   Please know that we all know we have family that truely loves and supports us.   And I know you are all praying for us.   And,  of course,  it's very much appreciated.  
I so wish I was posting we got another clear scan.   Just cannot believe this is happening. 
I have a feeling I am never going to fall asleep tonight.   Brain please shut-up for just a little while.   I need some zzzzzs. 

Boys at Lego Land in Florida

Trish and her mom took the boys to Florida for spring break....  I had to work.  I imagine they are having a good time...  Not alot to report.  We are hoping to be going to California in a few months - reschedule of our trip from last summer that we had to postpone .  Plane tickets are paid for so i hope they don't go to waste.  Brody is supposed to get another set of scans this month,  we won't book anything until after he gets his results in...

Not much else to report ...  Boys have been busy with school...  Mom and dad have been working.

More later

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