Brody at Cherry Fest on Friday the 13th (June 13th, my birthday)

We all had fun at the Cherry Fest in Whitehouse Ohio.   The boys look forward to it every year.   We were there on my birthday this year.  

Brody Getting Ready to Drive a Go-kart in Columbus

Brody had to go to Columbus for his 2 week scans to assess how things are looking so far following his first HSV injection.  

After a day of labs,  MRI,  and PET CT,  Brody and I headed to Magic Mountain in Columbus for some fun.   He was super excited to just meet the height requirements to drive the go-cart himself rather than being Mom's passenger.  

After our go-cart rides we headed to the movie theaters to see Malificient.   He loved the movie and is ready to take Geordi and Jaden to go see it when we get a chance. 

On June 7th, we all had a blast at a Campout to Stomp-Out Cancer event we held at our house.  We invited a bunch of friends to Camp-Out in our backyard and charged a camp fee which we donated to Curesearch for Children's Cancer research. 

Troop 97 Boy Scouts assisted us with the event.   They were a great help.   They helped watch over the kiddos attending,  cook the food,  run some games,  pre-filled water balloons,  set-up tents and tables and chairs,  and then helped us clean everything up the next morning.  We had loads of water inspired fun.  

My friends Carolynn,  Tom and Mirissa brought their DJ equipment and played us some fun,  upbeat music for the event too.  

We also watched an outdoor movie in our yard.   Brody picked Dispicable Me 2.  It's one of his faves.  

Our Camp-Out to Stomp-Out Cancer event was so much fun.   All the kids really had a great time and we managed to raise $960.00 for childhood cancer research that day.   Total win-win!!

Brody's 2 week scans showed the tumor to be pretty much the same.   It hasn't really gotten any bigger or smaller.   The PET showed less active tumor in the area of the HSV injection.     It cannot be said that this is from the HSV injection though,  this area could just not be active at the time of the scan.   It could still sometimes be active.  I was relieved the tumor didn't get bigger and thankful that Brody has been feeling so great and enjoying just being a kid.

His labs were concerning.   His creatinine levels went up a little more.  

Good weekend

Brody's procedure went well-- the only "issue" we had after was that he had some blood in his urine again. We were concerned about his platelets again so asked them to draw labs (CBC and BMP)--- and to also bump up his IV fluids-- our concern was the different contrast he had to take for his procedure and imaging can be hard on his kidney.

His labs came back real good-- his Creatinine which had been as high as 1.4 to 1.5 last month has been trending down. Was .80 on Tuesday and on Thursday night was down to .70. By Friday morning his urine had starting to clear up and looked pretty clear by Friday night. Creatinine is a "lagging" indicator of kidney function so it might take a week to see if it is continued to improve or the blood in his urine was indicative of a problem---we are hoping he was just passing some clots from his earlier issues.

Brody has felt good (other then a head ache on Sat night that passed quickly)-- and has been eating and drinking real well. He has put on some weight since he has been off chemo for 5 weeks now and weighs about 50 pounds now (up from his usual 44 to 46 pounds).

We put the swimming pool up on Sunday and after replacing one small patch on the side and letting the glue dry-- we started to fill it up yesterday morning--- takes about 30 hours to put 5000 gallons in the pool.... hopefully it will warm up quickly and we will get some good use out of it soon.

That's about it for us.

Bill

Brody Enjoying a Popsicle and Watching "Wreck-it Ralph" After HSV Injection Procedure

Brody's procedure to inject HSV went well

Brody is in the recovery room right now and doing well after his surgical procedure to inject the mutated HSV virus into his tumor.   There was a large team of doctors involved and in the room this morning as the virus was injected.   They had all been discussing and reviewing Brody's case for the past couple of weeks.  The group decided after comparing and contrasting various scans that the best spot to inject would be in the tumor near the spinal column.  

 

The PET CT showed only a small area of his tumor as active tumor.   This area is located in the section of tumor in and around his spinal column.   Dr.  Cripe let us know that according to the PET CT it appears much of the tumor mass is differentiated tissue,  most likely of tissue similar to muscle tissue.  

 

Below is the definition of differentiation from the National Cancer Institute, just in case, anyone is not quite sure what this means.  But basically, it's a good thing.  The cancer cells that have differentiated would grow and spread slower than undifferentiated cells. 

 

 

differentiation (DIH-feh-REN-shee-AY-shun)

In biology, describes the processes by which immature cells become mature cells with specific functions. In cancer, this describes how much or how little tumor tissue looks like the normal tissue it came from. Well-differentiated cancer cells look more like normal cells and tend to grow and spread more slowly than poorly differentiated or undifferentiated cancer cells. Differentiation is used in tumor grading systems, which are different for each type of cancer.

 

Another WONDERFUL bit of good news from the PET CT is that there was not any active cancer showing up in Brody's bone or lymph nodes nor anywhere else but in the spinal column area.  BIG FAT YEAH!!!!!

 

Brody will stay in the hospital tonight for observation and should be released tomorrow around noon.   He will return for a lab check and exam on Tuesday afternoon and again next Thursday.   He will get scans again at 2 and 4 weeks following the injection he received today.  

 

Another bit to share is that Dr. Cripe had surgeons from Nationwide Children's Hospital review Brody's case for surgery to remove the tumor.  The surgeons felt it was not advisable at this point but it was not impossible.  Also, the area in the spinal column would not be nearly as difficult as the rest of the tumor to remove.  This made me feel better that surgery may still be an option if it turns out that the HSV trial does not work for Brody. 

 

Just got word Brody is getting ready to be moved out of recovery to his room.  

Keep praying and crossing fingers!

Playing Arcade Games at Ronald McDonald House

Sorry,  not the best quality pic... But I like it anyway. 

Building Statues at Ronald McDonald House

Brody is Starting the HSV trial

Brody completed all of his baseline scans and tests yesterday and today.       Brody is a go to start the HSV trial.   He will actually be getting his first HSV injection tomorrow (Thursday).   He will stay at Nationwide Children's Thursday night and should be able to go home sometime Friday.  

I am both excited and nervous to be starting this trial.   We do not know if it will work for Brody but we are praying it does.   It's scary to be off chemo that was at least slowing things down but obviously it hasn't been slowing the tumor down enough.   I am hoping HSV miraculously heals my child.   There have been other patients with "incurable" cancers achieve complete remission with oncolytic virus therapy.  Maybe Brody will be the first person with rhabdomyosarcoma healed with oncolytic therapy.  He will be the second child with rhabdomyosarcoma to receive HSV.   Unfortunately,  it was not a success for the first child.   But,  you just never know,  it may be a completely different story for Brody. 

We have no big updates on the suspicion that Brody's cancer may now be in the bone marrow.  The oncologist felt it was not necessary to go looking for it if it does not change the treatment plan.   He felt that the PET CT could give a false positive for cancer in the bone marrow and that it's somewhat invasive to do a bone marrow biopsy.   So we are not going to go looking.  

Brody continues to feel very good.   This fact alone keeps me happy.   I am so thankful for every feel-good day we get.  

Brody's kidney function has continued to improve a little bit each day. 

He got blood on Friday and his hemoglobin so far has been good since then.   His hemoglobin should not drop while he is participating in the HSV trial.  If it drops we will worry again about the cancer being in the bone marrow.   If it stays steady or improves then it's likely not in the bone marrow.  

Dr. Strunk did let us know Tuesday morning that Brody's erythropoietin level was actually high rather than low so it's not a kidney function problem causing the low hemoglobin levels.  

We are lucky to have gotten a room at the Ronald McDonald House across the street from the hospital for this week in Columbus. It helps a lot to not have to pay for a hotel room this week.   Jaden and Brody have both enjoyed checking out all the fun stuff to do here too. 

Well,  I better get some sleep.  

Keep crossing fingers and saying prayers!

Fishing on Thursday

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