Brody with Toledo Iron Workers, Part of the Oncology Team, and Fellow Cancer-Fighters

Brody and several of the kids have enjoyed watching local iron workers building an addition onto the Toledo hospital during chemo treatments.  They have been working right outside the window of the infusion room so the kids and staff have all had a front row seat to watching the building take shape.  It was fascinating to watch it come together.  The kids and staff painted messages on the windows to the iron workers and the iron workers responded in kind with childhood cancer awareness flags and "dragons" displayed/hanging from the iron beams they were placing.

On Monday, the iron workers and Jeffers Crane Services treated all the kids to a pizza party and gave them all hard hats, candy, and teddy bears.  The kids all loved it, of course, and it was nice to see them take the time to spend with the kids that have been watching them do their cool work right outside the window.

Brody's oncologist, Dr. Strunk, has his hand on Brody's shoulder.  We all love him!  One of Brody's favorite nurses, Laura, is standing behind Dr. Strunk in the green hard hat.  Laura and Dr. Strunk are the two people who Brody most enjoys giving the hardest time while at Toledo Children's.  

We have a date for a surgery consult at Cincinnati Children's/Brody doing well after stent replacement surgery he had Monday

We are scheduled for May 1st at Cincinnati Children's hospital to discuss Brody's surgery to remove as much of his tumor as possible.   We are hoping that we will be able to schedule surgery for sometime the week of May 19th or the next week after.   We have many worries about this surgery but we feel the potential benefits outweigh the potential risks.  

Brody had a smaller surgery earlier this week.  He had surgery to replace the stent in his ureter on Monday.  He has to have this replaced every 3 to 4 months.  His tumor is placing too much pressure on his ureter.  Without the stent in place, the ureter is not strong enough to stay open so that urine can drain from Brody's kidney to his bladder.  Unfortunately, the stents cannot stay in indefinitely and do need replaced periodically.  Brody did well with his surgery.  It hurts really bad for him to go pee the first few times after the surgery.  He dreads this part and says it feels like a bee stinging him over and over again when he pees.  He expected it to hurt and was super tough and got through it anyway.  He is able to go potty now comfortably again.  

Brody is not looking forward to his major surgery coming up but he has not given up his battle against cancer and knows that this is best chance to gain significant ground in this battle.  He also remembers how incredibly miserable he was when his tumor was only slightly bigger than it currently is.  He was in a lot of pain and did not have control of his bladder or bowels.  Just the slightest increase in the size of Brody's tumor and he could be right back in this situation again. Brody is also having a lot swelling still in his groin area due to pressure from the tumor.  It makes him pretty uncomfortable at times.  He is hoping that this improves after surgery.  We were encouraged to learn too from the urologist on Monday that Brody may not need the stent in his ureter anymore after the surgery to remove his tumor.  Brody would like to not have to keep having that surgery every 3 to 4 months.  He knows there are lots of things that could possibly go wrong during the surgery to remove his tumor and that it will be a tough road to recovery from the surgery.  The alternative of not doing the surgery and all the things that could go wrong without doing it are more worrisome for him though.  He also know that he may go through this massive surgery and the tumor may still come back.  He has already had 2 prior major surgeries to remove his tumor and twice the tumor has come back with a vengeance.  These surgeries added a significant amount of time of Brody being here with us and enjoying life though.  Even if it does come back, and we know it's very likely that it will, we hope to at least gain a significant amount of time that we would probably not get otherwise.  

Brody was excitedly planning a party this evening.  He wants to have sleep-over party with his friends before he has to have his big surgery.  He was making quite the large list of friends and planning out foods and activities.  It was fun seeing him so excited about it and listing lots of fun things he has done in the past that he somehow wants to make happen at his party too.  We have to pick a date that will be during a time he is strong enough for the party and before his surgery.  He really only has a few days each month that he is healthy enough to have a party.  Anyhow, I know Brody will have me nailing down plans and a date tomorrow.  

We spent most of Easter in the hospital getting blood and platelets but we still enjoyed our day.

Brody started having problems with blood in his urine late on Good Friday.  At first we were not terribly alarmed because he does have blood in his urine occasionally due to the stent in his ureter.  A small amount of blood or clots makes the urine look very bloody.  We tried to remind ourselves of this when we saw some very bloody looking urine after Brody had difficulty going pee due to passing a blood clot in his urine.  Things did not seem to be improving on Saturday though and we started to get worried as the urine looked darker and darker red and Brody was having a very hard time trying to pee due to large clots.  Brody's previous lab for platelets he had done on Thursday had been low too.  

We contacted the oncologist on call and explained our concerns.  She called Brody's urologist.  The urologist called us and said that it sounded like he had a very large clot in his bladder that just needs to pass and that the urine will look extremely bloody until it does pass.  She wanted us to see if Brody can manage to pass the clot on his own but if he were to get to the point that he really could not pee that we would have to bring him in to place a catheter and assistance with getting the clots to move on out.  I told her that we were worried about Brody's low platelet counts and that this may be contributing to the blood in the urine too.  Also, Brody was super tired and was not having the energy to do the things he normally is able to do.  We were worried he was losing a lot of blood.  She asked that we discuss these concerns further with the oncologist on call.   So, I called her back and she had us come in Sunday (Easter) morning to check his labs.  It turned out that he did need platelets and blood too (from loss of blood).  

Brody's bleeding started to settle down very soon after receiving the platelets and he started to feel much more energetic and more like himself after getting blood.  Platelets and blood were excellent Easter presents. 

 Although we spent most of our Easter at the hospital we did enjoy the day together.  We played lots of games, got Easter baskets from the hospital, and enjoyed talking and goofing around with one another.  We were all just happy to see Brody starting to feel better as he was getting some much needed blood products and we all just appreciate and cherish every holiday we get to spend together.  The boys did get to have their Easter egg hunt at home Eater morning before we headed to the hospital too.  We didn't miss out on this fun festivity. 

My mom drove up for a visit on Saturday afternoon and stayed the night.  She just celebrated her birthday on Good Friday.  We weren't able to make it down to visit her on her birthday and were glad she was able to come see us instead.  With all that was going on with Brody, we didn't quite get to give her the birthday celebration we had planned.  But, we were all very happy to see her and spend some time with her.  We will just have to have a belated proper birthday celebration.  Sounds like a good excuse to me to plan another extra special day.  

Enjoying taking turns burying each other in the Florida sand

Watch "Brody enjoying "car wash" at Disney" on YouTube

Brody enjoying "car wash"  at Disney: http://youtu.be/ABt2j88sTY0

Test driving a car at Disney

Enjoying the hotel pool

Brody Enjoying the Florida Sunshine

Just got home from trip to Florida, Got Good CT Scan results, Brody getting chemo this week, and Brody will hopefully have surgery in a few weeks to remove as much of his tumor as possible

We (Bill,  myself,  Geordi,  Jaden,  Brody and their friend Levi) just got home from a trip to Florida late last night.   It's not something we really have the money for right now but we decided it was worth the additional debt.   We all needed this time together and Brody especially wanted to go.   How do you say no to a boy battling cancer?   I am so glad he was well enough to go and that we had enough of a break in his treatment regimen to go.   We went to Disney for 3 days and enjoyed the beach in Treasure Island,  Florida for 2 days.   Brody's favorite ride at Disney is still Splash Mountain.   He did manage to allow us to check out other rides at the parks this time though.   Brody just barely met the height requirement to ride Aerosmith roller-coaster.   He was super excited to ride this and absolutely loved it.   We rode it multiple times but not as many times as Splash Mountain,  of course.   We were lucky to get to enjoy a visit with Bill's sister,  Nancy,  while in Treasure Island.   Bill hadn't seen her in a very long time and the boys and I had not met her yet.   We enjoyed our time with her and are so happy that we were able to see her.   We greatly enjoyed our trip and wish it could have been longer.  

Brody had a CT scan early this morning and is getting his chemo right now.   We got good news on the CT scan today.   The tumor did not get any larger since the last scan 3 weeks ago.   The tumor is the same size as the last scan.   I would,  of course,  prefer it had gotten smaller but not getting bigger is wonderful news too.   The new chemo regimen appears to be at least stabilizing things.   His CT scan results are being sent to Cincinnati Children's for review also.   Our oncologist emailed the oncologist we have been consulting with at Cincinnati Children's to let him know the scans are being sent and that he wants the tumor board to review them and strive to schedule Brody for surgery to remove as much of the tumor as possible in 3 to 4 weeks.    This will be a MAJOR surgery as Brody's tumor is very large with major organ and vascular involvement and is still within his spinal column.   His bowels will also need to be moved away from the residential area of his tumor.   It will be held away from this area with mesh.   This will allow radiation treatments to the area after the tumor is removed.   Intestines cannot handle very much radiation.   Moving them away from the treatment area will allow Brody to receive this additional treatment.   Otherwise he could not receive more radiation treatments to this area as he has already received the max he can without moving his intestines over.  

I am happy and sad at the same time over the prospect of upcoming surgery.   All the potential complications and seeing Brody go through another massive surgery are worrisome.   It is Brody's best chance of survival or at least significantly more time with him than what we could have otherwise.   Brody is a tough,  very strong boy who absolutely has not stopped fighting.   He is full of life and makes the most of each day.   He remembers how he felt after his last major surgery similar to this one.   He knows it will be rough with significant risks but he is not ready for the alternative to not go forward with this fight.  

Back from Florida

Brody has been feeling pretty good lately and the timing worked out (between school spring break and Brody's chemo) for us to work in a trip to Disney World and the beach. We drove down there and had just enough extra room in the Van to bring the boys friend Levi with us.

Had a good time...  Brody was just tall enough to ride Aerosmith rock n roller coaster (48") and liked it a lot...  His first roller coaster with loops in it....  Went on it 3 times... Lines were not horrible at any of the parks.