Brody and Jaden Had Fun Exploring the Play Gym at Magic Mountain Together

Brody and Jaden Bumper Boat War at Magic Mountain in Columbus

We had a long break between tests, scans, etc. while in Columbus last week.  We decided to head to Magic Mountain for some fun. 

Brody got his second HSV Injection on Friday

Sorry for the lack of updates.

Brody has been feeling mostly well. He and us are adjusting once again to having a nephrostomy tube. His kidney function has been continuing to improve and his last set of labs 2 days ago (Saturday) showed his creatinine down to 0.63 (normal range is 0.3 to 0.7)-- the previous week before his tube was placed it has been as high as 3.50 so a definite improvement. This is about as low as we have seen since about January or February-- it had been trending up in March and into April to around 0.8 to 0.9. 

We were hoping that there was an issue with his internal stint causing the problems but we have now concluded that the tumor has been pressing on the stint/ureter enough to obstruct the urine flow to his bladder and his kidney has likely been under some stress for some time. The reason we believe this is that his groin swelling (edema-- from fluid accumlation) has almost completely resolved itself and his weight has rapidly dropped about 6 or 7 pounds-- his recent gain in weight was most likely from fluid retention-- his left leg had been swollen some too and this looks almost normal now. His urine output for the first few days with the nephrostomy tube was definitely more then he was taking in.

Brody, Trish, and Geordi and Jaden wend to Columbus on Tuesday night for and he had a PET CT and MRI  on Wednesday to plan for his HSV injection-- these showed there had been some growth on the side of the tumor next to the kidney--- this also showed to be the "hottest" part of his tumor (PET CT shows where the cancer is most active). It also showed that there looked to be no activity where the HSV injection was given previously...... as a result of this, his second HSV injection was put into this part of his tumor on Friday morning.... everything went fine-- Brody woke up kind of early from the procedure (he usually sleeps a while after) and seemed kind of distressed-- anxious-- kind of hard to explain-- he complained of back pain and a headache and a few other symptoms but after getting some tylenol, a popsicle and cookie, and some, diet coke-- he felt better. He watched Netflix and played a little bit of video games on friday and was discharged on Saturday about 1 pm.

Brody was happy that they changed his nephrostomy tube dressing while he was under so he didn't have to sit through us pulling all the tape off his back-- the dressing must be changed at least once a week-- he remembers not liking this one bit.

Other then the above-- not much going on with us. We have to follow up twice this week and then weekly visits until his next injection.

More later....

You Tube Video of Brody in a Local Commercial

Click on the link to watch Brody in a commercial for Promedica.  (Toledo Children's Hospital is part of Promedica)

 

 

http://www.youtube.com/watch?v=gJoLAfTrEm0

 

 

Brody's kidney function is improving

Brody's surgery to place an external nephrostomy tube went well.  He is feeling okay since the surgery and adjusting to having the tube and bag again.  

His lab results this morning showed significant improvement in his kidney function.   His creatinine was 2.5.  His potassium and phosphorus levels came down too.   He is no longer on a low potassium and low phosphorus diet.   He was very excited to hear this news this morning.  

Brody is upset about having an external nephrostomy tube again especially during the summer.   Swimming is one of his favorite things in the world to do and our pool water was just finally getting warm enough for Brody to swim in it.   He was looking forward to swimming in the pool this weekend.   He cannot swim though with an external nephrostomy tube.   He also loves showers and hates sponge baths.   He was trying not to cry last night when talking about all the things he hates about having an external nephrostomy tube.  

I wish I could tell him,  it's just temporary.   But we really do not know if he will ever not have the external nephrostomy tube again.   Right now,  it's looking like he will have it for awhile.  

The urologist does not think an internal stent is an option any longer unless the tumor gets significantly smaller. They think the kidney has been under stress for some time now from the tumor and that the internal stent hasn't been enough for awhile and we are just recently starting to see the effects of this stress.  

I asked if a debulking surgery would be a possibility.   The surgeon says there is too much involvement of major blood vessels in this area of the tumor.   It would be a very last resort option to do surgery to the tumor outside of the spinal column.  The surgeon felt there would be around a 50/50 chance that Brody would even survive such a surgery.   Surgical removal of the tumor in the spinal column is still an option though.   This is something Bill and I need to seriously consider.   It is not something I would consider right away.   Brody needs to heal from his current situation.   But,  it's something we need to weigh the pros and cons of soon.  Brody seems to be having more issues with incontinence lately and also his foot drop is much worse recently.   Maybe surgical removal of the tumor from the spinal column could help this.   Plus getting rid of any live area of the tumor is something we normally want to do whenever possible.  But there are certainly risks to do the surgery too.   For now,  we will observe his symptoms and see if they resolve and keep an eye on his tumor growth through frequent scans.   The tumor so far has not gotten larger since starting the HSV trial.   If we see progression then we would be more apt to consider surgery and switching to alternative treatment option (although we are quickly running out of options).  

I am upset for Brody that he has an external nephrostomy tube again with very little possibility of getting rid of it.   But,  I am so thankful that it's working and his kidney function is improving.   It gives us more time with Brody.   The reality of what we could have been facing instead is so much worse.   I will cherish every day I have with Brody.   Each day we get is a gift even if it's a "bad" day.  

Brody Feeling Good After His Surgery and Learning to Play Chess (Big brother, Geordi is teaching him)

Brody's Surgery went well and appears the internal stent was indeed partially occluded.

Brody is out of surgery and in recovery room now.   Surgery went well.   The interventional radiologist injected dye during the procedure to see if it could make it through Brody's internal stent that was suspected to be occluded and the culprit of  Brody's sudden worsening kidney function.   Very little of the dye made it through the internal stent.   So sounds like it is partially occluded.   Hopefully with the external nephrostomy tube in place now,  Brody's kidney makes a rapid recovery. Time will tell.

Brody's Kidney Function Took a Sudden Big Turn for the Worse This Weekend

Brody started feeling nauseated and threw-up a couple times Sunday morning.  He also just seemed more tired than usual.  This was concerning to us and we were especially worried after seeing Brody's creatinine levels continuing to increase a little bit each time we had labs done recently.  The nausea, vomiting, and tiredness can all be signs of kidney failure.  Also, dehydration can certainly worsen kidney function. 

We decided to contact the doctor on call from Toledo Children's Heme/Onc early Sunday afternoon to see if we could bring Brody in for a lab check and some fluids due to our kidney concerns.  She had us bring  him in for this.  Unfortunately, the labs showed his creatinine had jumped tremendously.  He had been at 1.31 on June 12th and jumped all the way to 3.42 on Sunday, June 15th.  This is a huge increase in such a short amount of time.  She contacted Dr. Cripe in Columbus since he is now managing Brody's care rather than Toledo Children's.   Brody's other labs were relatively stable so it was decided for him to finish a bag of fluids in Toledo and then for us to travel to Columbus.  

We arrived in Columbus late Sunday night and then we were seen first thing Monday morning in Columbus.  Brody was sent for an ultrasound and more labs were ordered.  The Monday morning labs (June 16th) showed the creatinine going up a little more to 3.43 but many other labs were now not so stable.  The ultrasound showed hydronephrosis (fluid in kidney) but it looked to be about the same amount of hydronephrosis as his last ultrasound.   So at first, the kidney function decline was not suspected to be from the hyrdonephrosis.  Dr. Cripe consulted with a nephrologist and turned over management of Brody at this point to the nephrologist.  Of course, being a Monday, we had to wait and wait and wait all day Monday before Brody finally got to see the nephrologist.  He was not able to eat or drink anything all day in case the nephrologist decided to do any surgical procedures (kidney biopsy, stent replacement etc).  So Brody was hungry and thirsty all day (so were his brothers and myself since none of us wanted to eat or drink in front of him nor leave him to go do such a thing).  Brody did not eat Monday morning either since we were expecting that surgery may be a possibility.  Around 5pm yesterday (Monday), we finally got to see the nephrologist.  Brody was relieved that he said he would not do any surgical procedures that day yet and so Brody was allowed to eat and drink.  That made his day!  The nephrologist let us know that he reviewed Brody's past MRIs and that the MRI of the kidney shows increased hydronephrosis rather than stable hydronephrosis.  He suspected that the internal stent may not be working efficiently enough anymore.  He placed Brody on IV fluids best suited to his kidney function to prevent dehydration.  He put Brody on a low potassium and low phosphorus diet.  He was also started on Phoslo with meals to bind phosphorus in the foods he eats.  Brody's blood was acidotic and sodium bicarb was started also to reverse this. 

Brody was happy to finally get to eat and drink last night despite his diet restrictions.  His nausea and vomiting have not been a problem since Sunday morning.  Zofran has been keeping that at bay. 

Today, the urologist and nephrologist both let us know that they both think the internal stent is no longer working.  They both feel the safest thing to do is to place another external stent to drain the kidney rather than place another internal stent.  They did not feel the internal stent has actually failed but it is just not enough against all the pressure from the tumor anymore.  Brody will not be happy about the external nephrostomy tube again.  I am sure of that.  But, I really do hope this is the solution.  The alternative of a non-functioning kidney with unknown cause is far more frightening.  He needs a functioning kidney to live and for any treatment of his cancer. 

Brody will soon be having surgery to place an external nephrostomy tube.  We do not yet know the time of the surgery, only that it will be today.  He will be squeezed into the schedule at some point today.  Brody has been very sleepy today.  He has been sleeping all morning (He slept most of yesterday too).  He hasn't been awake long enough for us to tell him about the surgery yet.  We don't want to wake him and have him feel hungry etc while waiting for the surgery either.  So we are choosing to let him sleep in peace for now. 

Please continue to cross fingers and keep us in your prayers. 

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