Fishing on Thursday

Some nibbles but no luck...  We were only out about an hour.

A Worrisome But Happy Day

Brody is getting blood again today.   At this point in his chemo regimen,  his hemoglobin should be increasing rather than decreasing.   I was surprised to find out that his hemoglobin had dropped again and that he again needed blood.   Our oncologist was concerned too.   He did not feel that the little bit of bleeding he gets from his stent could be enough to keep dropping his hemoglobin.   It's possible Brody could just be having a more difficult time bouncing back from chemo.   His body has been through a lot.   But,  our oncologist is worried that Brody's cancer may now be present in his bone marrow and this may be the reason that Brody's red blood cells,  hemoglobin,  and hematocrit keep dropping.  He said that it could be Brody's kidney function causing the problem too.   He ordered a lab check of erythropoietin which is a hormone made in the kidney required for the process of making red blood cells (red blood cells are made in bone marrow).  We will not hear the results of the erythropoietin level until sometime this weekend or maybe not until Tuesday.   Hopefully,  the red blood cell issue is related to Brody's recent kidney function problems because cancer in his bone marrow would be seriously bad news.  

Our oncologist let the team at Nationwide Children's Hospital know about his concerns and that he is waiting on erythropoietin lab results.   Brody will be at Nationwide Children's Hospital on Tuesday and Wednesday this next week for scans related to entering the HSV trial.   One of these is a PET CT which should show if there may be active cancer in the bone marrow.   It's possible due to these new concerns that a bone marrow biopsy will be done now too. 

I am trying not to worry too much about this news just yet.   There is nothing I can do to change anything so worrying serves no purpose and it could just be a temporary problem and not cancer in his bone marrow at all.   Not worrying is easier said than done,  of course,  but I am going to concentrate on the positives.   Brody's kidney function labs improved again today and he has been feeling very good.   Kids with cancer in the bone marrow deteriorate very quickly,  are in pain,  and really are not well.   Brody feels wonderful and in fact has felt better than I have seen him feel in a long time.   I am going to remember that and just enjoy these awesome feeling great days. 

Brody and Jaden have been at the hospital all day today but have had a very fun day.   They have been busy with scooter races through the hospital hallways,  playing "bubble ninja"  (blowing bubbles and popping them),  chasing bubbles,  playing Just Dance on the Wii (the nurses enjoyed watching them play this today),  watching movies,  and just goofing around.   Brody has been Mr.  Giggles today.   I LOVE his laugh!!!  No other laugh in the world like his!   There is nothing that makes me happier than watching my kids laugh and have a good time.   Today has been a day of lots of happiness!

Watch "Scooter Fun" on YouTube

Scooter Fun: http://youtu.be/slb29MfrEH0

Watch "Bubble Fun" on YouTube

Bubble Fun: http://youtu.be/pTykoIF1kpE

Better Kidney Function Today....And Just Good Enough To Meet Eligibility Requirements for the HSV Trial

We just got home from the hospital.  Brody had his labs checked this morning to determine if his body was ready for chemo yet.  Today would normally be the first day in his next cycle.  His oncologist wanted his serum to be less than 1.0 before he would start chemo again.  He also planned to only give Brody 3 days of his chemo rather than 5 days he would normally receive due to kidney function concerns. And, he planned to no longer give one of Brody's chemo medications (bevacizumab) due to side effect concerns.  Bevacizumab blocks angiogenesis (formation of new blood vessels) which helps prevent tumors from growing.  They need new blood vessels to grow.  This medication has really helped slow the growth of Brody's tumor.  But, it can prevent proper wound healing.  The medication is suspected to have contributed significantly to Brody's current kidney function problems.  His kidney was likely damaged from his stent and/or surgery to replace the stent.  He lost a lot of blood over Easter weekend in his urine.  His kidney function has been compromised since this episode.  The bevacizumab can certainly complicate healing from damage to the kidney caused by the stent in his ureter.  Brody needs the stent.  His urterer is compressed by his tumor.  The stent keeps it open so that urine can still flow from his kidney to his bladder.  The stent can irritate the kidney and cause tissue damage and bleeding.   The bevacizumab makes it more difficult to heal from these episodes.  In addition, it's possible Brody may need surgery soon to his spinal column to remove the tumor from the spinal column.  He would need to be off of the bevacizumab for at least 28 days before such a surgery.  Unfortunately, we may not have 28 days notice that this surgery needs to happen.  The surgeon would need to act quickly if his tumor starts to progress in the spinal column.  So, basically Brody is no longer able to continue with the same chemo regimen that has been keeping his tumor stable (at least not getting bigger). 

Fortunately, Brody's kidney function labs were much better today.  His serum creatinine was 1.04.   He needs to have a serum creatinine of 1.05 or less to meet kidney function requirements to enter the HSV trial.  So he just barely made it and we are super excited that he met this criteria!  The other criteria Brody needs to meet is that his disease is currently "progressive."   I contacted Dr. Cripe at Nationwide Children's Hospital today to let him know that Brody's kidney function now meets the study requirements and that he is no longer able to continue with the same chemo regimen that had been stabilizing his disease.  He was excited for us that Brody's kidney is doing better and he is getting us scheduled to start the enrollment process into the HSV trial.  Brody will likely be scheduled next week for baseline scans and tests.  The first HSV treatment would need to be at least 28 days after his last chemo dose.  His last chemo dose was on April 30th.  So Brody could possibly receive his fist HSV dose next week or the following week if he is accepted into the trial.  We will not know until after the enrollment process if he will be accepted into the trial.  Dr. Cripe stated on the phone that he may have to wait until after the tumor has shown growth again before he can enter the trial.  If the scans next week show that the tumor has gotten any bigger this may be enough to show progression of the disease.  So at this point, the size of the tumor in the scans next week are the big determining factor as to whether Brody will enter the HSV trial or not.  If the tumor has not gotten any bigger, then he may  not be able to enter the trial and will need to continue with his modified chemo regimen instead.  

If we are not able to enter the HSV trial yet,  I fear Brody's kidney function deteriorating over time with continued exposure to chemo and then him not being able to enter the trial later on due to kidney function problems.  And, then also that his tumor starts to progress rapidly and then possibly that the HSV trial may not be open at that time to enter.  

It's likely that HSV will be more effective at higher doses. If Brody enters the trial now, he would be the last patient entered for the current dose being given.  If Brody and other patients do well with regards to safety with the current dose, then the next time the trial opens up, a higher dose of HSV would be given.  If it turns out that Brody cannot enter the HSV trial now, maybe it works out later on down the road that he enters into it later at a higher and maybe more effective dose of HSV.  

For now, we have to let the cards fall where they fall and proceed based on what cards we have been dealt.  

Please continue to keep us in your prayers.  Pray for a miracle healing of our sweet little boy.  

Here is a link with information on the HSV trial.  There is a video on the page too of Dr. Cripe talking about the trial (it plays after a short commercial....there was an automatic video ad for something else on the page too....you can close that one and then open the other video to see Dr. Cripe explain things).  

http://www.livescience.com/40353-the-cold-sore-virus-may-help-kids-fight-cancer.html

Quick Update

Brody has been feeling good most of the time this week.  His appetite has picked up and he has been eating much better.  He has been enjoying playing outside with his brothers and friends.  Spring has finally arrived to the Toledo area.  

Brody seems to feel much better than he did a couple a weeks ago.  I am hoping this may be a sign that his kidney function has improved.  We are still waiting on his kidney to hopefully heal.  He will not be able to receive chemo nor enter any trials until his kidney function is good.  

In the morning Brody will be getting labs checked to see if he is ready to start chemo again.  He would normally be due to start the next cycle in the morning.  We are really worried that his kidney function will still not be good enough.  If Brody's labs indicate he's ready for chemo again, then the oncologist plans to give him  chemo this week Monday through Friday.  Then a couple weeks later he would have scans again to check the size of his tumor.  If the tumor has gotten bigger, then he would be eligible to enter the HSV trial.  If not, he would not be eligible.  He would continue with the chemo regimen that is stabilizing the disease.  There is only one spot left for the HSV trial.  It's possible it could close again before he even gets the next set of scans.  If Brody's labs show his kidney function is strong enough to enter the HSV trial, I plan to ask the oncologist if maybe we should go ahead and do scans now rather than in a couple of weeks.  My concern is that maybe the tumor is growing and the HSV trial we want to enter may close again before we have chance to enter it.  We don't really have a back-up good chemo option to go to if the current one is no longer stabilizing the disease.  

Jedi Battles at the Park

It was an absolutely beautiful day today and Brody felt great too.   We went to the park to celebrate Charlie's birthday (one of Brody's best friends).  His party was at Whitehouse Park with lots and lots of friends.  Brody, Jaden and Geordi all had a blast.  

Brody's Kidney Function Remaining About the Same

Brody's kidney function labs were about the same today (Monday) as they were last week on Friday.  I was relieved that at least it did not get worse.  I am still very worried about his kidney function though.   He cannot participate in trials nor receive chemo until his kidney function improves.  

We are hoping this is more of an acute kidney injury (possibly from the stent in his ureter) rather than a chronic kidney issue.  Brody had significant bleeding from his kidney and/or bladder on Easter weekend.  We suspect it was his stent that caused the bleeding/injury to start and then the bleeding was excessive due to low platelets and low hemoglobin occuring at the same time.  This injury and loss of blood could have caused enough loss of blood perfusion to the kidney to cause significant injury.  We are hoping that if this is what has happened that he is able to recover soon.  Our doctor told us that it may take a few weeks for him to heal if this is the case.  Also, it may take even longer for the labs to reflect the healing. 

Brody needed blood today and so we spent most of our day at the hospital getting that much needed blood.  

Tomorrow we are scheduled with Dr. Cripe in Columbus, Ohio to discuss the HSV trial.  Dr. Cripe is aware of the kidney issues and will talk to us about what we can do about this situation.  We may be able to give Brody a little time for his kidney to heal and get further kidney function testing in a couple weeks.  He can't enter the trial until his kidney function is okay but it sounds like he may be able to give Brody a couple weeks to heal and then retest kidney function.  

Disappointing News at Surgery Consult, Brody's Kidney NOT doing Well, Considering Entering HSV1716 Trial

We received discouraging news at our surgery consult last week on Thursday at Cincinnati Children's.  We were basically told that Brody's tumor is inoperable.  It is wrapped around too many major blood vessels (his aorta) and organs.  At our last visit to Cincinnati, the surgeons did not have the MRI results yet.  After, reviewing Brody's latest MRI, they decided the surgery is just too dangerous.  We did not get to meet with the surgeon personally on Thursday.  Instead, we met with Dr. Turpin (oncologist) who relayed this news to us.  I am relieved that Brody is not soon facing a MAJOR surgery.  We don't want him to have to go through another biggie.  But, at the same time I had high hopes for Brody to feel so much better after recovering from the surgery and also for him to have awhile without a giant tumor.  He is simply running out of room for this tumor to grow.  It's all over his abdomen, into his groin area, around his aorta and in his spinal column.  I wanted to know it could be removed surgically somehow and that we could be awarded with more time with Brody.  This news that we cannot do the surgery is very hard,  It makes me feel like our time is now so much shorter.  I pray it's not and I am still praying hard for a miracle.  I do live in the world of reality though and it's very difficult not to think about losing him.

We did meet with a neurosurgeon at Cincinnati Children's though.  He examined Brody and asked us a series of questions related to Brody's neurological symptoms.  He reviewed the MRI with us and showed us where the tumor has infiltrated the spinal column  He let us know that a lot of Brody's symptoms are indeed related to where the tumor is located in his spinal column (headaches, muscle weakness and cramping, shooting pains in legs, urinary and fecal incontinence, foot drop etc).  He explained that the slightest change in pressure or size in the tumor in this area can set-off any of these symptoms.  He did not want to do surgery yet to remove the tumor from the spinal column.  Brody's symptoms have improved lately and as long as this is the case, he would prefer not to intervene surgically.  (He felt the radiation treatments are still doing their work on the tumor in this area).   If Brody were to have any signs of worsening neurological symptoms or if upcoming CT Scans and MRIs show any increase in size, then he would do surgery to remove the tumor from the spinal column area.  He would want to act very quickly if any of these were to happen to prevent permanent loss of nerve function.  

Dr. Turpin spoke with us for awhile after we met with the neurosurgeon.  He wanted to let us know about some trials that have opened that may benefit Brody.  Two of the trials he told us about on our last visit to Cincinnati have opened (for a short time) that were closed when we last met with Dr. Turpin.  I wrote details about each of these in a previous blog post concerning our consult with Cincinnati Children's.  The two that have opened are the TEM-1 antibody trial and the HSV trial.  

We are considering entering the HSV trial.  Here is a link with information on this trial and a copy and paste from our previous blog post about this trial.  

This trial uses the oncolytic virus HSV-1716 which is a mutated version of the herpes simplex virus which has been demonstrated to selectively infect cancer cells rather than normal cells. Here is a link with information on this trial.

http://clinicaltrials.gov/show/NCT00931931

Dr. Turpin explained that unfortunately so far the human clinical trials have not been nearly as exciting as the pre-clinical and animal studies. It has not yet cured any of the children that have participated in this trial. And, so far there has only been one child with rhabdomyosarcoma that has participated in this trial. This was a 13 year old who received this treatment back in 2010. A phase 1 trial is a dose-finding trial though. Maybe the correct dose has not yet been given? Phase 1 trials start with low doses and then work upwards. The trial enrolls three children at a time and tests the effects of one dose on each child. If that dose is tolerable then the next set of 3 kids receive a higher dose. It could be more effective as dosages increase. At least I really hope so, anyway. 

We are considering entering this trial now even though Brody's tumor has been relatively stable since switching to his current chemo regimen of cyclophosphamide, topotecan and bevacizumab.  It is almost certain that his current chemo regimen will eventually fail/not keep things stable.  We have been in the situation before where it was our plan that if the regimen failed then we would enter a trial we had in mind only to have that trial close just as we were hoping to enter it (when Brody's chemo stopped working).  We have been interested in the HSV trial for a long time.  We are thinking maybe it's best to take the opportunity to give it a try now rather than waiting for Brody's current chemo regimen to fail and then finding out there are no spots left for the HSV trial at that time.  Also, Brody's current chemo regimen is very harsh and his kidney is really starting to have trouble.  We are not sure how much longer his little body will be able to withstand his current chemo regimen.  We are hoping that the HSV trial can stabilize the cancer for awhile and allow his little body to heal.  We are hoping it won't be quite so harsh.  (And, of course, we are praying it's the miracle we have been waiting for too).  

Speaking of kidney troubles....we are extremely concerned and worried about Brody's kidney function.  Brody's creatinine and BUN are both up considerablly and he has a lot of protein in his urine this past week.  He was not able to finish chemo for this cycle due to his kidney function.  He had to stop it 2 days early.  He had a renal ultrasound performed to confirm that there is no obstruction to urine flow (the stent is open and working) and no mass within the kidney or bladder etc.  Brody had surgery just a couple weeks ago to replace the stent in the ureter.  It's possible he may be healing from injury during this surgery or from an infection.  He has been on additional antibiotics just in case but has not had any positive urine cultures.  It has been a very LONG weekend waiting for our next lab check on Monday morning.  I am hoping his kidney function shows signs of improvement after we get labs on Monday morning.  I am worried that this may be a more chronic kidney function problem though. His kidney has taken a beating with all of hte chemo he's had to take and the pressure from the tumor itself too.   Brody will not be able to enter any trials with poor kidney function.  At his current levels, he would be ineligible for the HSV trial.  Also, he would have extremely limited options for chemotherapy without good kidney function.  Our oncologist has said to us before that Brody's kidney problems may actually be a blessing in disguise in that it would be far less awful to pass away from kidney failure than from the cancer itself.  If Brody's kidney is actually failing, I am not sure we would take major steps to prevent the failure.  Unless there is a means to actually save his life or provide him with a significant increase in quality time left of his life, we may have to choose to let him succumb to kidney failure rather than cancer.  I hate thinking about all this but I can't stop these awful thoughts.  Praying and praying and praying some more for good kidney function labs tomorrow morning (Monday morning)!  

If Brody has good kidney function labs and doesn't need blood Monday morning,  then we will head to Nationwide Children's Hospital in Columbus, Ohio to meet with Dr. Cripe tomorrow afternoon.  He is the principal investigator for the HSV trial.  We will be meeting to discuss the details and possibly enroll in the trial.