History

Friday, January 2, 2009 3:48 PM CST

Okay, I know I've been a slacker when my husband asks "Just when are you going to update Brandon's webpage?" Sorry to all you loyal visitors out there. So here goes....

Let's talk medical stuff first. Brandon returned to clinic at Brenner's on Christmas Eve and we were blessed to find he didn't need any transfusions!! It is official - he is making his own cells, his marrow is recovering, his stem cells have engrafted! This was a wonderful gift, because Brandon gets a break from all the things related to transfusions - needles, pre-meds, sleep and moodiness from benadryl, and mostly long days in the hospital. We returned to Brenner's for his weekly visit this past Monday (29th.) His counts looked great - WBC 3.3 HGB 10.4 PLT 39. We go back next monday to check counts and chemistries. On Tuesday of this week, Brandon saw a cardiologist at Brenners. They did an EKG and a thorough echocardiogram. Her findings were the same as CHOP. His shortening fraction ranges between 22 and 27. So Brandon does have mild decreased function in his left ventricle. Most likely the damage is due to some of the medicines he has taken in the past four years in this battle against NB. The doctor put him on Enalapril - a blood pressure medicine that can help his heart not have to work so hard and to try to keep the situation from getting worse. "Mild" decreased function she explained would not limit his activity and he shouldn't even notice anything going on. It is typically found when doing an echocardiogram. Now, the update on the CEP-701. The medicine arrived late on Christmas Eve. CHOP was able to ship it directly to our house. Brandon starting taking the medicine on Christmas Day. It is a liquid that he takes twice a day for 5 days and he gets 2 days off and then starts the cyle all over again. The liquid is mixed with apple juice and taken with breakfast and dinner. The first cycle showed a pattern - he would get an upset stomach between 1 to 2 hours after taking the medicine and he would throw up. After 3 days of taking it, the vomiting went away with the dinner doses. He was only getting sick after the morning dose. All of this has resulted in his weight dropping back down to 60 1/2. This week, Dr. McLean wrote for Zofran, an anti-nausea medicine they give with chemo. Brandon started his second 5 day cycle yesterday. I gave him the Zofran with both morning and evening doses and he didn't vomit with either one. He still feels sick, but he keeps his food down. We are scheduled to return to Philadelphia on January 27th and 28th for an MIBG scan.

On the homefront, Christmas was wonderful. Brandon got all the things he wanted from Santa - a new BB gun. Did I mention he was too afraid to ask Santa for it? He wasn't sure how Santa would feel about a gun for Christmas. So he planned to tell Santa "Just bring me anything you think I will like." But good ole' Mr. Claus didn't let him get out that easy....he dug a little deeper and asked for specifics. When Santa heard a BB gun, he looked at Michael and I and told Brandon to make sure we were okay with it and that he had to follow gun safety. We just laughed when we left the mall. So, Santa must think Brandon is a responsible young man, cause sure enough he got what he asked for. Spending time with our families was the best. The food was good too.

New Years Eve was fun. We stayed home to be together. Ashley bought party supplies - horns, hats, silly string, lighted blinking 2009 glasses and confetti. Brandon and I created an indoor mini-golf course all over the house. He named it "Mixed Up Mini-Golf." His course had 7 holes: 1 - Arctic Zone 2 - The Military Base 3 - Monster in the Closet 4 - Sea Life 5 - Curvey 6 - Jungle Jam 7 - NFL. We took golf balls and painted them different colors. We used all kinds of things to make the holes unique, from plastic tablecloths to plastic cups - all purchased at the Dollar Store (its amazing what you can create with $5.) We also had sparkling grape juice with our champagne glasses (also purchased at the Dollar Store.) We ate pizza, played our Mini-Golf, played Family Feud and rang in 2009 while watching on tv the ball drop in Times Square. I reminded Michael that this was our 15th New Years Eve spent together! I can't believe its 2009!

We've been working around the house, playing games together and even worked in some swimming. Brandon has been playing with all his new toys, hunting squirrels with that BB gun, and spending time with his friends.

Hey, maybe my New Year's resolution could be to post updates sooner? I might could swing that one.

Wendy

Monday, December 22, 2008 9:01 PM CST

Sorry I've been a slacker with posting! Its Christmas and boy have we been busy.

We made it home from Philadelphia on Friday night. We found out Saturday morning by an email sent from Dr. Mosse on Friday night at 10 pm that yes indeed, Brandon will be getting the CEP-701. The FDA approved giving him the medicine. We have to wait until the drug company can ship the medicine to CHOP and then CHOP will send it to Dr. McLean here at Brenners so he can give it to us. So complicated!! We were so relieved to hear that Brandon can try this medicine. It is similar to the ABT-751, it should keep the disease from progressing. We hope it will work well for Brandon with little side effects.

We've been out finishing up Christmas shopping and enjoying all the sights and sounds of Christmas. We celebrated with Robyn, Keith and the boys on Friday night. We had so much fun watching the kids play and just spending time together. On Sunday, we were able to go to church. We even participated in playing the bells with the kids along with Christmas songs. The message on Sunday was very special. During the time we share joys and concerns, Michael announced that we had the approval for Brandon to get the medicine. The whole church clapped at the good news. After service, Brandon teared up on the way to the car and cried as he told us in the car how it made him feel when the congregation clapped for him. He said he couldn't believe that everyone clapped at the news of him getting medicine, and he couldn't believe how many people loved him. Need I say more? I sat in the back seat and cried too. I have so much to learn from that little boy. He has such a wonderful heart and is so brave and strong.

We went to Brenners today for a checkup. We left without any transfusions today!! But we have to go back on Christmas Eve, Brandon may need platelets by then. We plan to get there early so we can get out quickly.

We hope everyone has a very Merry Christmas filled with lots of love and happiness. Enjoy spending time with your friends and family, they are so very special. Most of all, remember and celebrate the birth of our savior, Jesus Christ!!

Wendy

Thursday, December 18, 2008 8:20 PM CST

This is a real quick update. I will post more details later. We are still in Philadelphia. We will be staying through tomorrow. There was a problem with the Clinical Trial and Brandon's echocardiogram. His heart function test wasn't high enough to get on the trial. His number was 27 and it needed to be 28. The doctors are working with the Pharmaceutical company and the FDA to try to get the medicine for Brandon off-study. As of tonight, we have approval from the company. Step one, done. Tomorrow they will work with the FDA. We will head over to the hospital in the morning to get counts before we head home. Hopefully the FDA will approve the request and CHOP can mail us the medicine on Monday so Brandon can start it as soon as possible. Also, Brandon will need to see a cardiologist to address the results of the echo. They are talking about putting him on a daily medicine to help. We will just have to wait and see. We can see a cardiologist at home or wait and see the one here when we come back in January.

We have all been stressed, worried, scared and saddened with the latest events. But we will get over this hurdle and back on track. Hopefully all of the doctors efforts will get Brandon exactly what he needs. Please pray for Brandon - pray that God's will be done and that He will continue to lead the way on this journey!

Wendy

Wednesday, December 17, 2008 4:29 PM CST

Christmas time is such a special time of year and this one is no exception. We were blessed today to find that the MIBG treatment worked! We were hoping for the treatment to do something, to put the brakes on. It did that but even better, it cleared up some places. The MIBG scan looks better, some spots were gone and the others that remained were not as bright as before. The CT scan looked fine, it did not show any masses. The lymph node situation seems fine. Nothing showed on the CT and Dr. Mosse explained that the tenderness and pain that came on Sunday was actually a good thing. If a lymph node is cancerous, it usually doesn't hurt. If a lymph node has infection, it causes pain. So she isn't worried about that. Also, the CT showed his lungs looked clear so his cold is just that, a cold. The bone marrow also improved. This is subjective, but she said the marrow was 50% NB in October and is now 10%. She could also tell by looking at his marrow that the stem cells are working, Brandon is making his own wbc's and rbc's. The doctors are "very pleased."

We are staying in Philadelphia again tonight so he can start the new medicine tomorrow. It is a Phase I Clinical Trial using a medicine called CEP-701. It is a liquid he will take twice a day for 5 days then have 2 days off, then 5 days on, 2 days off. The goal with this medicine is to keep the disease quiet again and not spreading, similar to what we had hoped to do with the previous medicine, the ABT-751. We will head back to the hospital tomorrow to get the first dose of medicine, do the paperwork and get bloodwork done. After that we will be heading home!! We will go to Brenner's on Monday for counts and an additional blood draw for this clinical trial. Brenners will have to send the blood to CHOP. The new medicine shouldn't affect his counts or cause hair loss. It may cause nausea and could effect the liver enzymes. We will have to wait and see. Another trip to Philadelphia will be scheduled for 28 days from now. He will need an MIBG scan to see how things are going.

We also found out the final results on the ALK testing. It is very interesting. They needed a tumor sample to test in the lab, so Dr. Mosse asked for extra bone marrow sample when we were here in October with the disease progression. She tried to use this instead of a biopsy sample from the main tumor (Brandon's was removed from his abdomen in 2005. The first test results looking for the mutation in the tumor sample came back negative - we found this out back a few weeks ago when we were here for the stem cells. Now today Dr. Mosse said the second part of the test also came back negative for mutation - in fact it was 100% normal. This told her they weren't looking at tumor sample, they were looking at Brandon's cells from his marrow. Her hope to get tumor from the marrow didn't work. So, she said at least she learned from this and it will help her with research. In October, she had seen the ALK mutation possibility as a window of opportunity. If she could show Brandon had the mutation, she could get Phizer (the drug company making the inhibitor) to let her use the medicine on Brandon without actually having a Clinical trial started. She was trying to get another option for Brandon. Today, she told me her clinical trial will be open in March and she will make sure Brandon can get the medicine and try it. It is good to know they are working so hard for our little boy! Who knows, this medicine may be the one? Still looking, still hoping, still believing!!

God is good. Thank you for the prayers! We are truly blessed to have a God who loves us and hears our prayers. So many times, I know He is here, when in the middle of the storm there is a calm, it is Him. And soon we will celebrate Jesus's birthday, a time when we can remember how much we are loved. It will be a very special Christmas at our house again this year.

I hate to rub in it, but yesterday we did have snow and sleet. It didn't stick on the ground, but the cars starting looking white.....Brandon stuck his head out the car window to get a close look and catch a snowflake on his tongue. (Yes, the thought of dirty city snow crossed my mind, but I had to let him do it!!)

I gotta go, Santa Claus is coming to the RMH at 7:00 and so are the dogs from the Vet Pets. Brandon can't wait to get down to join the fun!

Feeling so humbled and calm yet inside jumping for joy,
Wendy

Monday, December 15, 2008 5:21 PM CST

Let me start with last Friday's visit to Brenners. It went very well. We moved through the day very quickly and we spent some time talking about what had happened earlier last week with the medicine. Brandon's counts were good. He was borderline needing platelets, but the doctor felt we could wait until Monday. As I mentioned before, he has been sick with a cold. They sent him for a chest x-ray and it looked fine. So, we left clinic around lunch and finally headed over to see Mr. Santa Claus. We picked up a few Christmas presents and just enjoyed being out together.

On Saturday, we went to Courtney's birthday party at the horse farm in Salisbury where she takes riding lessons. We had discussed not allowing Brandon to ride since his platelets were borderline, but once he saw the other kids riding and he saw the horses, he wanted to do it. He had a blast! So much so, that the owner offered him free riding lessons once a week. We headed to Concord Mills Mall after the party to finish up our Christmas shopping. I was up till almost 2 am getting laundry finished to pack for our trip to Philly.

On Sunday morning, our pastor came by to say a prayer with us before we left on our trip. We left around 8:30 and the trip was uneventful. I don't have any funny stories to tell. Brandon played video or slept. Mom and I chatted most of the ride. We sang Christmas songs, does that count as a funny story? Maybe if you were in the car listening to us you might think it was funny! We arrived around 5:30 last night.

Today we made it to the hospital at 8:00. Brandon needed platelets, so they gave them to him while he was getting his bone marrow aspirates and biopsy. We were afraid they wouldn't do the anesthesia since he has been coughing from the cold, but they listened to him and they felt it was safe enough to do the procedure. He was a champ as always. Woke up and ate 2 Oreo cookies and drank lemonade. We left the hospital around 2:00 today. His counts were WBC 2.2 HGB 9.7 PLT 19. Tomorrow he has a CT Scan, G injection and Echocardiogram. We tried to get him to go out and do something fun tonight, but he was tired and grumpy. He just wanted to rest in the room. We are in the Teen Center at the Ronald McDonald House. Brandon is playing on one of the computers here. Nana is downing the coffee to stay awake. She didn't sleep well last night. Brandon had a rough night with the coughing. We were worried about something else with Brandon too. Dr. Castellino found an enlarged lymph node under Brandon's left arm on Friday at his clinic visit and last night he started complaining that it was hurting. We were very worried about this, but today the doctor here said she didn't feel anything. I guess we will know more when we get the test results on Wednesday.

Tomorrow will be busy at the hospital. I plan to grab a philly cheesesteak somewhere. The weather isn't bad here, in fact it is comfortable. Maybe we can play some basketball here at the house tomorrow afternoon.

We love to read your posts in the guestbook to hear from home. Please keep Brandon in your prayers!

Wendy

Tuesday, December 9, 2008 10:00 PM CST

Sorry for the delay in posting...

Yesterday we headed over to Brenners to get counts. We planned on stopping by the mall and seeing Santa after the doctor's appointment. (We tried to see him on Sunday, but the line was way, way too long.) We arrived around 10:00 am....it was a very, very long day. All we needed were counts, and it took almost three hours just to get the report. WBC 2.9 HGB 11.2 PLT 17 So, this tells us that indeed Brandon's stem cells have engrafted and he is making some cells on his own. The platelets are always last to turn around. He needed a platelet transfusion.

This is where things really went south. There wasn't any room for us on the floor or in the clinic, so they sent us to the 11th floor, somewhere we have never been in our four years of transfusions. Brandon was being pre-medicated for platelets. The nurse tried to chart the benadryl and tylenol she had given him but the system showed someone changed the dose and she needed to give him more tylenol and bendaryl. She added what appeared to be a small addition and carried on about her business. I noticed Brandon wasn't resting well as he usually does - the benadryl usually knocks him out. His legs were jerking and he raised up a couple of times and looked wildly around the room and then laid back down. I walked over to him and he was in the fetal position with his hands behind his head and arms covering his face. I leaned down and asked him if he was okay and he stared at me with the biggest eyes and started to jerk and pull on his hair. Then he gritted his teeth and told me how much he hated me and to get away from him. He continued to pull at his hair looking very angry and even pulled at his pillow. He tried to choke me. It was unreal. I knew something was wrong, very wrong. He was so agitated and almost out of it. I told the nurse what was going on and that I wanted his doctor paged. She began to "fess up" that she thought the dose seemed a little high for him. Even the other nurses said the dose was a lot for his size. His nurse checked the system to see what the dose had been (since he's been getting platelets every 3 days there was plenty to look at.) The dose he should have received was 30 of bendadryl, but it was changed to 50 via IV. The tylenol should have been 400 and something but it was changed to 600 and something. So, Brandon had been given too much medicine. This caused the odd mental change and the restlessness and jittery legs. I was almost in tears!! Its bad enough to have to be there all day, but then to have him endure something like this because of a mistake just isn't fair. And what if it had been some medicine that could have seriously hurt him??? We even had to get a wheelchair to get him to the car, he was so drowsy and sleepy from the benadryl. We left the hospital around 6:00 pm. I spent quite a bit of time talking with the doctor and I sincerely hope to see some changes come Friday when we go back and I want to know exactly who changed his dose and why.

Today he has been feeling well. He seems to have a touch of a cold - congestion and dry cough. I hope this goes away quickly so it doesn't impact our scheduled trip to Philadelphia on Sunday. A cough could cause a problem with anesthesia for the bone marrow biopsy and a cold/virus usually affects the counts. As I mentioned above, we go back to Brenners on Friday to check his counts again.

As long as he feels well tomorrow, I want to take him out to do a little Christmas shopping and see Santa. Just get out and do some fun stuff together before we head back up to Philly.

Remember Brandon in your prayers, and some of his buddies from Brenners - Jaxon, Austin, Elizabeth and Colby.

Wendy

Thursday, December 4, 2008 3:27 PM CST

WBC 3.5
HGB 11.8
PLT 44

Yes, those are Brandon's counts today! If you are like me, you almost cried, you held your breath, and whispered a very deep felt thank you to the Lord. Wow! I even asked Pat, the lab tech, if she labeled the blood correctly! Was she sure it was Brandon's sample?? We were able to leave the hospital without any transfusions!!!! Brandon goes back on Monday to check them again. His weight was up too - 62 lbs!!

We met Ashley in Clemmons for a celebratory lunch, which included a couple of new Webkinz as gifts!

This morning we dropped by school to pick up work and of course so he could see his friends and teachers. He plans on going back tomorrow to spend some time in class.

Michael and Brandon went out Tuesday night and picked out our Christmas tree. We decorated it while listening to Christmas music. It was a blast. And no Christmas tree decorating is complete without an arguement, right? Brandon doesn't like the garland on the tree but I do. Brandon likes to hang 5 ornaments on one branch and I do not. So we comprised, you will find 5 ornaments on one branch in the front of the tree and you will find garland on the tree. It makes me laugh everytime I look at our Christmas tree!

Wendy

Monday, December 1, 2008 2:47 PM CST

Can you guess where I am writing from? Yep, Brenners.

Brandon needed blood and platelets today. His counts are WBC 2.9 HGB 8.4 PLT 18. We still aren't sure if the bump in the white count is a true turn of his counts or just a boost from the Neulasta injection he got 2 Fridays ago. We have to watch the trend over the next few visits. His weight is up again a little - up to 61 1/2. We are happy that his weight is up and that his white count is up at least for his safety and well being. And we are hoping that somewhere in those 2.9 are Brandon making his own wbc's.

We come back on Thursday to check counts again. We have a tentative plan to head to Philadelphia for tests and to possibly start a new drug the week of December 15th. This depends on counts. Starting a new medicine will require his counts to be at certain levels.

He's been feeling great. He started to get tired last night. He's playing and laughing. We hoped to start decorating for Christmas today, but it looks like we won't be home until late tonight.

Wendy

Friday, November 28, 2008 6:25 PM CST

Today's clinic visit made me very happy. His white count went up to 1.7! I hope this isn't another tease! I hope it continues to rise and the platelets follow soon. His HGB was 9.5 and Platelets were 16. His weight was 61 lbs! Way to go, Brandon! Just 4 more pounds to gain back!

Of course with platelets that low, Brandon needed a platelet transfusion. We arrived at clinic at 8:30 and didn't leave there until 3 pm. He slept for awhile (benadryl induced) and slept on the way home.

He's been keeping the golf cart busy. After dinner, he jumped on it and took Ashley for a ride. He loves to ride it. He played with a friend on it the other day for four hours! They pretended to be in the military and then they began to "go hunting." It was so great to see him playing and hear him laughing.

We go back to clinic on Monday to check counts again. I am praying that things continue up!

Wendy

Wednesday, November 26, 2008 9:21 AM CST

We are home!!! Brandon's last fever was late Sunday night and the cultures remained negative, so they let us come home yesterday after a platelet transfusion! After a hospital stay, I always think of Dorothy in the Wizard of Oz when she says "There's no place like home."

Brandon got a surprise yesterday. Papaw has a friend who sent one of his golf carts over to let Brandon ride around on and play with. It arrived yesterday afternoon. He bundled up and took me and Ashley around for a ride. When Michael got home from work, they drove around in it too. He loves it!

I can't believe Thanksgiving is here. We are planning a few small things at home since Brandon's counts are still really, really low. We go back to the hospital Friday morning to check them again to see if he needs any transfusions.

We hope everyone has a very wonderful Thanksgiving. Even through the painful times and the hardships we endure in our lives, we have so much to be thankful for. We give thanks for our family, our friends, our church, and mostly our Savior Jesus Christ, who through him we will have eternal life, and for God's promises that we can cling to.

Love to you all,
Wendy

Monday, November 24, 2008 1:54 PM CST

We are still at Brenners. Brandon has continued to spike fevers over the weekend. His last one was 101.7 around 11 pm last night. They drew a second set of blood cultures last night. So far the first cultures are negative. He is still receiving (2) different antibiotics every eight hours. He did have a little sore throat yesterday and some pain under his jaw and in the back of his neck. His counts are still as low as they have been - WBC 0.3 PLT 16 HGB 9.4. The doctors aren't going to wait on his counts to turn around to let him go home. He just needs to go 24 to 48 hours without fever, feel good and still have negative cultures and they will allow him to go home. Hopefully last night's fever will be the last one and we can head home tomorrow or Wednesday. We are just playing the waiting game.

We did get some good news from Philly. The urine test is back and here's the breakdown. They compared the numbers from the urine sample he gave when we were up there with pain and found out the NB had progressed to the urine sample he gave last week post MIBG treatment. The VMA level went from 17 to 13 with the normal being 0 to 9. The HVA level went from 38 to 18 with the normal being 0 to 15. They were happy about the change. They wanted to see that the levels had not elevated any more and they were pleased that they had already started to come down. This change hopefully tells us that the disease has been stopped from spreading - like we say "put the brakes on." It does not tell us anything about the disease burden. We are relieved and happy that the levels are down and close to normal.

Brandon is watching cartoons and he's been playing on the computer today. He is eating a little better, too. His favorite things to eat right now are french fries from Wendy's and olives. So another positive is that Wendy's is right across the street from the hospital!

Thanks for your messages and prayers. It means so much to hear from people who care about our little boy!

Wendy

Saturday, November 22, 2008 9:46 PM CST

It is almost 11:00 pm and we are at Brenners with fever. Brandon isn't feeling well - from the fever. He played fine today. He looked great today. Then tonight around 7:30 pm he started to act tired and asked to take a warm bath. When he asked to go to bed at 8:30, I really knew something was going on. So, I pulled out the thermometer and surprise! 101.5!

His port will be accessed and they will draw blood cultures and start him on fluids and antibiotics to be safe. Remember his white count was 0.2 yesterday, so he has no immune system to fight with. We hope and pray this is like so many of his fevers in the past with prior treatments - no true infection, and we are only here for a short stay.

All of this tonight reminds me of 4 years ago....Nurse Bev is still here tonight, the nurse who took care of our little 5 year old that Wednesday night before Thanksgiving in 2004 when this all began.

Hoping and praying that the stem cells start to grow soon!
Wendy

Friday, November 21, 2008 12:37 AM CST

Look, we brought the snow with us! How ironic that it snowed last night!! I know some of you were posting in the guestbook for Brandon to bring some snow home. Well, you got it! Brandon was so excited to see the snow on the ground this morning. It made us both want to be in a cabin in the mountains by the fireplace....

We drove home Wednesday. We made a couple of cool stops along the way. We finally stopped to see FedEx Field where the Washington Redskins play. It is a huge stadium! Michael and Brandon loved it. Michael is a huge Redskins fan so it was a nice treat. I took their picture together outside the stadium. Our next stop was Quantico in Virginia to visit the National Museum of the Marines. We had a great time. Brandon is very interested in World War II and they had awesome displays. The weapons, the planes, tanks - It was very cool. We even "landed" on the beaches at Iwo Jima and road to the shore in a boat like the Marines did.

Yesterday we basically chilled out at home. We pulled out some old boxed up toys that Brandon hasn't played with in awhile. We had fun putting them back together and watching Brandon play with them. He even put together a model car with Michael.

We are at Brenner's today. Getting blood and platelets again. He will also get another Neulasta shot today. His counts were WBC 0.2 PLT 15 HGB 8.8. I spoke to Diane at CHOP to check on the urine test and the results weren't back yet. We are anxiously awaiting those results. We are praying that the hormone levels are normal which would indicate the MIBG treatment put the brakes on the NB.

Keep those prayers going!
Wendy

Tuesday, November 18, 2008 5:48 PM CST

Okay, so we did see snow today. Just some flurries, but still it was snow. Brandon and I ran over to the window of the restaurant we were eating in when we saw the white stuff just to get a closer look!

Today went very well. Brandon received his stem cells around 12:30. He was pre-medicated with benadryl, tylenol, zofran and ativan. All these medicines to prevent a reaction and nausea. He didn't get sick at all! He slept for awhile. They went ahead and gave him a platelet transfusion after the stem cell infusion to make sure he was safe for the travel home. His counts were WBC 0.3 HGB 10.3 PLT 24. The stem cells will take some time to engraft, the earliest they've seen is two weeks. Brandon takes longer than that.

We spent about an hour and a half talking with Dr. Mosse. She is happy that the leg pain is gone, she is hopeful that this is a sign that the MIBG treatment did something to knock back the disease. Brandon gave a urine sample to check the catecholamines levels. This is an indicator for NB. We will compare this test with the one he did a couple of weeks ago before the MIBG treatment. We hope the levels are normal again, which would also be a good sign. The plan now is to wait another 3 1/2 weeks and come back to start on the next option. They like to give the MIBG six weeks to work before adding another medicine on board. We are happy to hear that there are "options." His counts will play an important role in the decision making process for the next step. Clinical trials are specific on requirements with platelet levels in order to be on them. So we hope and pray that the stem cells find room to grow and they grow quickly so he can be eligible for other medicines. More good news was when she told us Brandon had enough stem cells for another infusion which means he can have another MIBG treatment in the future if he needs it.

We also found out some results on the ALK gene mutation test she was working on. Brandon was negative for the mutation on one of the tests. We had hoped he would be positive so he could use the new drug. But Dr. Mosse said she has one more thing to check for. If this is positive, he may still have the opportunity to use the new drug as I mentioned before. She said it would take another week to get those results.

He is feeling good today. He's been laughing and playing. He is eating better. He ate spaghetti last night and hamburger today. He is worried about his weight. He knows he's lost weight, he not only hears it when he gets weighed at the hospital, but he sees it in the mirror. We are working on it - he's trying to eat something small every two hours to try to get his calorie intake up.

We met Sarah from Michigan. She also comes to CHOP for neuroblastoma treatment. She is Brandon's age and she is currently on ABT. They played together last night and Michael and I talked with her mom. It was nice to meet another little NB warrior!

The fire alarm went off here at the RMH a few hours ago. So we had to bundle up, grab a few things and run outside. And it is cold outside!!! The fire department showed up and checked things out. They found it was a false alarm, something wrong with the fire alarm. So we are nice and warm in our room now. Brandon is playing with his toys and Michael is reading (from the study bible you let him borrow, Eric.)

We will be heading home tomorrow. We will go to Brenners on Friday for counts and possibly another neulasta shot if the white count hasn't turned.

Looking forward to being home again!
Wendy

Monday, November 17, 2008 7:14 PM CST

Just a quick update to let everyone know we are safe and sound at the Ronald McDonald House in Philadelphia. The road trip went very smoothly - we made it in 7 1/2 hours!

We have settled in and are about to watch Kung Fu Panda. We have to be at the hospital around 9:30 in the morning. I will try to update again tomorrow.

Love to you all,
Wendy

Sunday, November 16, 2008 2:34 PM CST

I hate always starting out by saying I am writing from Brenner's, but the truth is I am doing it again. Brandon is already sleeping. That benadryl does it every time. We WERE SUPPOSED to be here between 2:00 & 3:00 to get platelets for travel tomorrow. The orders SHOULD HAVE already been in. I WAS TOLD to call on my way over to let them know we were on our way. All of these plans were made on Thursday so we could get in, get platelets and get out. Well, something went wrong in the plan. We got here and there were NO orders written for anything. Translation: we will be here longer than planned.

Brandon went to school for about an hour on Friday. It sure does lift his spirits to be around those kids! He went to the movies that afternoon to see Beverly Hills Chihuahua and took a friend along. We laughed, ate popcorn, laughed, played at the arcade and went to McDonald's for dinner. Yesterday Brandon spent some time at his cousin, Courtney's house. He had a friend come over yesterday afternoon and then he went to Robyn & Keith's to watch the Carolina basketball game. It has been nice to have at least a couple of days full of fun stuff not medical stuff!

We all went to church together today. Everyone was so happy to see him there. He was a little tired, but looked handsome as ever.

We leave in the morning for Philadelphia. Michael will be driving and Brandon and I will be holding on for dear life!! Just joking!! We are scheduled to be at the clinic on Tuesday at 9:30 am so Brandon can get an infusion of his stem cells. We will stay overnight and head home on Wednesday. Please keep Brandon in your prayers!

Love,
Wendy

Thursday, November 13, 2008 1:39 PM CST

I am writing this post from Brenners again. Brandon is getting blood and platelets today.

We came to clinic on Monday and got platelets - counts were WBC 0.1 PLT 14 HGB 9.8. We came back yesterday and checked them. They were WBC 2.1 PLT 20 HGB 9.3 so he didn't need anything yesterday! We got to go home! Today we came back to check the counts and surprise - they dropped WBC 0.5 PLT 11 HGB 8.7. Brandon is resting in the bed - the benadryl knocked him out as it usually does. Platelets should be here soon. Pretty much we will be here most of the afternoon.

We are leaving for Philadelphia again on Monday. Brandon will get stem cells on Tuesday since he is having a hard time recovering his counts. We will be able to come home on Wednesday.

Brandon went to school for an hour today and on Monday. He was so happy to see his friends even for just an hour or so.

On Tuesday, Michael went to work and Brandon and I were trying to sleep in. I heard someone in the house and thought maybe Michael had come back in to get something he had forgotten. But then I heard my Mom talking to Jake (the dog.) She had gone to the store and bought all the things needed for a wonderful breakfast. She prepared all the food and we had breakfast together. It tasted so good! She stayed with me most of the day and we really cleaned the house. When Brandon's white count is that low as it was on Monday, I like to clean extra if I can. It was nice to get something done - that sense of accomplishment really helps me!

Michael came home on his lunch to "pay up" on that Spaghetti Dinner Brandon had made for us on Sunday. So for the rest of Tuesday Brandon played videogames. Chandler came over and they spent some time together, too.

Thanks for the messages in the guestbook. It gives me something to read when I am sitting here in this hospital room!

Please keep praying for our little man!
Wendy

Sunday, November 9, 2008 6:26 PM CST

I learned a few things between Saturday and today. First, I learned that the best place to cry is at church. Second, I learned that some of the best people to cry with are your friends.

I was also reminded of a few things today. I was reminded of how strong God's love is. I said a prayer this morning. I called out to Him - telling Him how I felt, alone, scared and sad. I asked for His help. Not long after that, my husband talked to my mom and asked her to keep Brandon so the two of us could go to church. This was God answering my call.

Brandon is feeling better since getting his blood products on Saturday. Also, he hasn't mentioned anything about back pain today. And he has been able to eat a few things - 2 chicken nuggets, french fries, and right now as I am typing this, he is snacking on popcorn!!

We were able to go trick-or-treating Saturday night at a few houses. It was great for him to see his cousins, Ian & Rylan and Courtney. A special treat was that Ashley took her trunk or treat plans and moved them to my parent's house for Brandon. Since we missed Trunk or Treat, she wanted to do a little something for Brandon. Her costume was Snow White. She decorated the back porch/laundry room like a forest complete with a paper mache tree she made, leaves, the sounds of chirping birds and forest sounds. The best part was she set up a bobbing for apples game for him. Brandon loved it!

As I mentioned, today Michael and I went to church and I can't say enough about how wonderful it was. I wish Brandon could have been there. Maybe next week. Thank you, Seth, for requesting the special reading from the book of Psalms for Brandon.

After church, we spent time with Ian & Rylan, Robyn & Keith and Ashley. We took a couple of model rockets outside and launched them. It was fun to share the afternoon with family. We played outside for a while, but then as the sun started to go down, it got a little to cold to be outside.

When we got home, Brandon told Michael and I that we had to go to our bedroom and stay until he came to get us. He and Ashley were up to something. About 1/2 an hour later, we found out the secret. They had planned a special dinner for us complete with candlelight, background music, menus and a handsome little waiter wearing an apron. Brandon seated us and we had wine glasses to drink tea out of, our choices on the menu were spaghetti for the main course and ice cream for dessert - sprinkles and chocolate syrup as requested. Michael was worried because the "restaurant" was so fancy that there weren't prices listed on the menu. When our bill came, the meal ended up being quite expensive - equal to two new videogames. It was one of the sweetest things anyone has ever done!

So, we head back to Brenner's tomorrow to check his blood counts. It may be another long day....we'll see.

Thank you for checking in on us, thank you for your prayers, thank you for your kind words in the guestbook. All these things mean so much to us.

Thank you to Brandon's G.L.A.D.Fish friends for calling tonight and saying hello over speakerphone! He enjoys hearing from all his friends.

Wendy

Saturday, November 8, 2008 12:57 AM CST

We are at Brenner's getting fluids, blood and platelets. Another shock to see his numbers today. Hemoglobin is down to 6.6 and platelets are down to 6. Yes I said 6 - where the normal is 150 - 300. WBC's down to 0.3 which means basically nothing to fight infection with and we have to watch for fever. Even more concerning, he has started complaining off and on about his back hurting.

I wish I had something good to talk about, but I just don't.

It's so hard to watch this. It's so hard to watch your little boy trying to fight with what he has left after four years. And sometimes I don't even know what I am watching.

All I know is that I love Brandon with all my heart and soul. And I changed the picture 'cause right now I need to see him laugh. I also added three new pics to the photo page - just click on view photos above.

Wendy

Friday, November 7, 2008 10:52 AM CST

Our visit to Brenner's surprised me. Brandon's counts already bottomed out. His WBC is down to 0.8 which means be on the lookout for fever, his HGB was 8.8 and PLT were 26. We go back tomorrow to get them re-checked, and most likely to get a blood transfusion and a platelet transfusion. He has lost 4 pounds. He received some IV fluids yesterday while we were at the hospital and he did get a Neulasta shot.

He was sick on his stomach most of the day yesterday, but last night he managed to eat some macaroni and cheese. He is tired and I haven't quite figured out his mood yet. I guess he's like the rest of us - on an emotional rollercoaster.

Wendy

Wednesday, November 5, 2008 9:18 AM CST

I knew everyone would enjoy a special post from Brandon. After reading the guestbook entries from all of you, he wanted to write himself. The messages from his friends really made him feel special.

We made it home yesterday around 3 pm. Our flight home was much better than the one up to Philadelphia. The only thing was we ran into rain when we got closer to Raleigh. The rain was even on the windows of the plane. This of course caused some turbulence and as Afton mentioned, Brandon did get sick as we were landing. He says he will never fly again!

Brandon is mad because he can't go back to school yet. He misses so many of his friends. Chandler brought home "Get Well Cards" from the fourth grade yesterday. We sat down and read them right away. He was so excited to hear from everyone.

We will be going to Brenners tomorrow for counts and a physical. Brandon is tired and he isn't eating yet. He has taken a few small bites of chocolate pudding this morning, but that's it. He is taking it slow on the eating. Hopefully when he stops one of the medicines at noon today, he will begin to get his appetite back. The best news is that his pain is gone. We will focus on and enjoy that for today.

Wendy

Monday, November 3, 2008 7:32 PM CST

hey. brandon here. just writing to say i miss ya'll and i can't wait to get back home.

i miss you all at school and Mrs. Whitaker, don't think i don't miss you too because i do. Tell mrs dyson and mrs tatum i said hey.

to my glad fish friends at church i can't wait to get to church to see ya'll.

i really liked the messages you all sent. i read them with my mom tonight.

it was cool to be up here when the Phillies won the world series. there were people out in the street partying all night long.

when i flew up here i nearly puked. now i am scared to get on the plane because i might puke. but tomorrow i have to fly even if i don't like it. :(

later,
bk

Monday, November 3, 2008 7:32 PM CST

Sunday, November 2, 2008 6:16 PM CST

I really don't know where to start. It all seems like a whirlwind at times.

Brandon is tolerating the treatment well. He is tired of being stuck in that room, in that bed. I am not sure if you all remember that the room is wrapped in plastic, lead shields surround the bed, only one parent is allowed to stay in the room, the parent wears a gown, gloves and booties plus dosimeter while in the room. Brandon can't have any of his toys in the room - anything he touches must be thrown away. So, yes Courtney, he is watching lots of TV. He is catching up on his favorite shows on Animal Planet, finding new cartoons to watch on Nick & Cartoon network, and catching a few movies he's been wanting to see.

His uptake number this time was 45 - last December it was 52. Yesterday he dropped to 24 and today it was down to 13. He needs to be at 7 to be discharged. They come in around 10:00 - 12:00 to check the number. Brandon had some jaw pain from the treatment, which he has had in the past, this is common with the uptake of the radiation/Mibg. He has also vomited a few times, therefore he isn't eating anything. I think he's had 4 oz of chocolate ice cream all day today. But they think his appetite will come back once he is out of here and gets some more of the radiation out of his system. He isn't in pain while in the bed. Since he's not up getting around, his leg isn't bothering him. Dr. Mosse made sure that he didn't have a catheter for this treatment. Most of the radiation leaves his body through body fluids and the main one is urine. So, they are usually required to have a foley catheter placed and it is very uncomfortable. In fact, when we talked about what was about to happen, he cried at the thought of it. It calmed him to know he didn't have to have one. But, he is required to use the bathroom every 2 hours. Not very fun at night! I have been setting the alarm on my cell phone and sleeping with it in my hand to wake me up every two hours during the night to make sure he is going on schedule. Plus he gets medicine every 4 and every 6 hours to protect his thyroid.

So, here we are. I don't know how to describe it, I don't know how much to share, I don't know what words to use, our feelings are all over the place. It is an emotional roller coaster to say the least.

I shared with you that the MIBG scan showed progression. The bone marrow showed progression. Dr. Mosse & Dr. Maris believe his pain was coming from the bone marrow disease. The bones were having to expand to make room for the NB which causes bone pain. Bone pain is some of the worst pain. And it is hard to isolate. Spot radiation would not have worked to ease his pain since it is a moving target and they would have been chasing it around. We spent time having meetings with our medical team and discussing the options - chemo, MIBG, NY, Vermont...so many things to talk about, none of which we wanted to. The plan is to do this MIBG to try to put the brakes on the disease once again and then we will sit down and talk about the next step. Right now, we just need this MIBG to work well and work fast. With these latest test results, Dr. Mosse says she is worried. She knows Brandon still has fight left in him and we are trying to make the best decisions to help him continue this battle. She also took an extra sample of his NB tumor from his bone marrow. She is personally taking it to her lab to look for the ALK gene mutation that she recently discovered and I previously mentioned to you. It will take about 10 days to test. There is a 1 in 5 chance that Brandon's NB has this mutation. If so, there may be a drug we can use that has not been used yet in children but has been used in adults with lung cancer. We will just have to wait and see on this.

As you can tell, there is a lot going on up here. Medically, emotionally, spiritually....

We love the posts, the messages, the prayers. Please keep them coming. Your love and support mean so much.

Wendy

Thursday, October 30, 2008 1:37 PM CDT

I spoke too soon. I am in a room with Brandon. We have cried together and now we are going to get ice cream.

The MIBG scan showed several new spots. The NB has progressed. Dr. Mosse feels that the pain is coming from the bone marrow disease. He is being admitted to do another I-MIBG treatment.

Michael, Ashley & my dad are on their way to Philadelphia now.

Just pray.

Wendy

Thursday, October 30, 2008 9:09 AM CDT

Greetings from the excited city of Philadelphia! Yep, the Phillies won the World Series last night here at home. We watched the end of the game on TV last night. The people flooded the streets to celebrate. Its pretty cool to be here.

I want to say first - thank you, thank you, thank you for all the posts in Brandon's guestbook and especially for the prayers. The messages bring a smile to our day.

I don't know where to start, there is so much already to share. I may run out of time while typing and leave you all with a "to be continued..." I am sitting in the playroom at the Hospital. Brandon is playing online with some NFL kid's site where he plays games. My mom is reading a magazine. We are waiting for anestheia to do his bone marrow aspirates and biopsy.

So, let's talk medical stuff first. Brandon is still limping, but the pain is better. He hasn't had pain medicine since Tuesday. Today he is getting around on his own. Yesterday we checked his counts and surprisingly they had turned and headed back up. HGB was back up to 10.4 and Platelets were up to 48. The CT scan they did yesterday was good. No masses showed up, it looked the same as it did in September. So the report yesterday was "CT scan was good, Need more information." Today he had his MIBG scan at 8:00. We are waiting to see what that scan shows. We will know more today after the results of the MIBG scan. By doing the CT scan first, Dr. Mosse was checking for a tumor mass on the spine that may cause the leg pain. Thankfully, that has been ruled out since the CT looked fine. I will update more when we know more.

Just know that we are feeling blessed that the CT was good and that the counts were moving in the right direction. Keep those prayers going.

Now, let me back track to Tuesday. We decided to fly so it would be easier on Brandon. The flight would leave at 11:45 am and arrive in Philly at 1:00 pm. Sounded good when compared to an 8 1/2 - 9 hour drive. Boy, were we wrong....When we arrived at the airport they announced that the flight to Philly was delayed by 1 hour & 10 minutes. Brandon wanted pizza to eat and of course the only pizza place was on the other side of the airport. I figured I had plenty of time to go get it, so I headed off. Halfway back to our gate, I received a phone call on my cell, it was Brandon calling me from a Security Officer's phone. They were boarding the plane and I had to run back to the gate. Brandon needed to board early since he was in a wheelchair from the leg pain. Okay, I made it back, breathing heavy and flush with pizza and soda. What a sight! We boarded the plane and then...another delay. Would you believe they loaded and unloaded that plane 3 times for delays! We even taxi-ed out to the runway, ready to go and they pulled us back. It just so happened that there was bad weather in this area. Some places even received 3 inches of snow. Philadelphia was contending with rain and wind gusts. The pilot told us that planes that were circling the airport in Philly waiting to land were experiencing icing from the weather so they were having to delay so many flights. I found out US Air cancelled some flights to Phila. People who were headed to other places were routed to other airports to make connecting flights. We toughed it out and finally landed in Philly at 5:30. On top of all the delays, the flight was horrible. If this flight was the first time you had ever flown, you would never do it again. The clouds were so dark and thick that you couldn't see anything. We had to circle and wait to land. People were getting sick on the plane from the constant turning. They took up the drinks early and had us buckle early due to turbulence. During the landing, the flight attendant started singing a song over the speaker to calm everyone. What an experience! We were so happy to get out of that airport!

Last night at the Ronald McDonald house was pet night. All of the dogs were dressed in Halloween costumes. This was perfect for Brandon. He loves dogs! He spent time with all of them, there were about 15 dogs there to visit with. The local newspaper was there taking photos and interviewing the kids. They even had special treat bags for the kids with pet themed snacks.

With love,
Wendy

Monday, October 27, 2008 2:49 PM CDT

There have been so many fun things and good times that I haven't written about yet, including the Panthers game we went to, Brandon's Halloween party, but today they are all overshadowed by leg pain.

Yesterday morning Brandon woke up with pain in his right leg. He refused to put weight on it in the morning. By evening he would hobble around a little. This morning, it is still there. The pain moves from his thigh to his lower leg, but it hasn't gone away. Also, his counts were the lowest they've been in a while when we were at clinic on Thursday. WBC 3.3 HGB down to 9.0 (borderline transfusion) PLT 40 The combination of low counts and leg pain....need I say more? We are worried, we are scared.

His doctor in Philadelphia wants us to head up there this week instead of next and they told me I could start pain meds to give Brandon some comfort. We were scheduled for evaluations next week. I have spent the day making travel arrangements and getting laundry done. We are flying out of Raleigh tomorrow around lunch. My mom will be traveling with Brandon and I for the tests. Michael will come to Philadelphia if needed.

Please say a prayer for Brandon. Please.

Wendy

Thursday, October 9, 2008 6:56 AM CDT

Once again I've been a slacker on posting...

We've been extremely busy lately! Since returning home from Philadelphia, we've made two trips to Brenner's, Brandon finsihed Cycle 9 of ABT, and we went to Carowinds. Its only been two weeks since our trip.

Two trips to Brenners:
The first visit was last Thursday. It was just a routine mid-cycle of ABT checkup. Brandon needs a CBC, chemistry, and physical for the study. His blood counts looked fine - WBC 2.4 HGB 11.1 PLT 60. His chemistries were normal (shows liver, kidney function.) He checked out fine on physical. We spent some time talking to Dr. McLean, we haven't seen him in awhile. He shaved his head for a St. Baldrick's event, which I thought was admirable. St. Baldricks Foundation raises money to help fund research for childhood cancer. Brandon spent time at the Arts for Life table with Betsy. He painted a very cool picture of a donkey (I think) wearing a suit. You have to see it to appreciate it. Betsy thought it was so good that she made a copy of it to send to the artist who she got the idea from. Brandon certainly loves doing activities with Betsy when we go to the hospital.
The second visit was yesterday. On Saturday, Brandon started complaining with a sore throat. By Monday, he was congested and feeling bad. Monday night he didn't get much sleep for coughing. I kept him home from school on Tuesday. He spiked a fever of 101.2. Now, in the past a fever of 101 meant being admitted to the hospital for antibiotics and a stay until cultures proved negative. So, I called Brenners and talked with one of his doctors. Brandon still has his port, and they accessed it in Philly 2 weeks ago. This means he still has a potential for infection there. The doctor and I talked. We felt the fever was most likely related to the cold, but just to be safe they wanted to see him yesterday. If he had gotten worse overnight on Tuesday, I was told to take him to the hospital. The visit yesterday turned out well. They had ordered a chest x-ray due to the cough. It was fine. His counts looked fine. His white blood cells were up a little which could indicate he is fighting something. His chemistries were all normal. They drew blood cultures and will let me know over the next few days how they turn out. They were considering giving Brandon an IV antibiotic, but with the cbc and xray results, they decided not to. He was written out of school for another day to rest since it takes him longer than most of us to get over a virus. Brandon hasn't been feeling well. He's been looking pale and if you know Brandon, you know that his eyes will show you when he is sick. He gets that honest - from me. I am the same way. You can look at me and tell I am sick. Brandon loves to take warm baths when he isn't feeling well. I think on Tuesday by 6 pm, he had taken 3 baths. Another clue that he was feeling bad.

I really can't believe he's finished another cycle of ABT and will start number 10 next Wednesday. My how time flies! And with time flying, we will be in Philadlephia again in 3 weeks.

Last Tuesday, my uncle, Sid, passed away unexpectedly. He was my Dad's younger brother. I have lived my whole life across the street from him. Its strange and sad to know he's not there anymore. I can look out my window and see his "things" - house, car, camper, barn - but he's not there. My Dad is having a hard time with the loss. They've lived so close to each other for so many years! So, if you would say a little prayer for my Dad and for Sid's wife, Bonnie.

Last Saturday was busy! Grace Lutheran Church in Salisbury held a fundraiser for Brandon. We met Robyn and Keith and went to the Church to meet the wonderful people who were working at the event and of course to eat! They cooked bbq chicken and ribs. The food was delicious! The men were so nice and funny! Brandon played on the playground with Ian and Rylan. We left there and headed to Carowinds to meet up with a group from our Church. Carowinds was hosting Christian Music Day, a concert of Christian bands. We spent the afternoon in the park riding rides, playing games and eating. The kids had a blast! We headed over to the concert to hear Casting Crowns. I have to tell you the concert was wonderful! I love Casting Crowns' music, so I sang and sang and sang. But the best part was when I got goosebumps from standing in a crowd of that many people and realizing that we were talking and singing about God. It was overwheliming. It made my heart smile. I know it sounds cheesy, but it is true. My heart felt so light, so cheerful. I felt so happy. It also touched me when I realized that Brandon's first concert was a Christian music concert. I looked over at my family and Church friends several times during the show and smiled because I will always remember sharing that special evening with them.

Please keep in your prayers the family of Brandon Loose. His battle with NB recently ended as he became an angel. We met Brandon and his Mom in Philadelphia a while back. I can see him rolling down the hallway in the hospital on his Heelys (the shoes with the wheels that were popular with the kids.) Also, remember little Jaxon Sechrest who continues his battle.

Wendy

Thursday, September 25, 2008 7:05 AM CDT

Good morning! We are home again. Another trip to Philadelphia under our belts... As Michael posted in the guestbook, Brandon's neuroblastoma is stable again. The MIBG scan looked the same, the CT scan looked the same and there was a slight improvement in the bone marrow. They draw marrow from both sides. One of his sides remained at 5 - 10euroblastoma and the other side has continued to improve and now is the same as the other side, 5 - 10Dr. Mosse and Dr. Maris were happy about the results of the visit. Brandon, of course, looks great. He will take two more courses of ABT and we will return to Philly in 6 weeks for another disease evaluation. He started Round 9 of ABT yesterday. He also received his flu shot for this upcoming season. I can't belive it is already that time of year!

I spent some time talking to Dr. Mosse about her latest research finding. I have several links to news articles and interviews about this. If you are interested in hearing or reading about it, just email me and I can forward them to you. But to summarize from the source... A few years ago, Dr. Maris met a family who had a history of neuroblastoma with several family members being affected by the disease. He took this as an opportunity to research how genetics affect NB. He gathered blood samples from the family. I belive his lab found a few more families and gathered samples from them too. Dr. Mosse has been studying this and made a discovery. There is a mutation on a certain gene involving a protein called ALK. After finding this, Dr. Mosse was excited because there is already one drug made by Phizer to target this type of mutation since a certain type of lymphoma and lung cancer in adults have a similar mutation. I am not sure how the drug works or what it does. This is all new. Dr. Mosse will begin a clinical trial soon to investigate how the drug affects NB. By discovering this mutation, CHOP will be able to offer molecular testing in two months to check any child diagnosed with NB to see if they have this mutation. Most NB, however, is not familial, it is sporadic disease - meaning children just develop the disease without a family history of it. Dr. Mosse said that in the lab, even NB that isn't inherited has shown to respond to the medicine. What does this mean for Brandon? Well, it means he can be tested in two months, although, Dr. Mosse says it is highly unlikely that he has the inherited gene (since it is rare.) But it also means, that in the future this drug may be available for Brandon if he needs something else. We can always try it. Overall, this research is great. We are always hoping and praying that they figure this disease out and find a cure.

We had a great time in Philadelphia. We spent most of our time at the Ronald McDonald house. We played basketball outside since the weather was so nice, in the 80's. Brandon loves to shoot pool in the teen center. They have a jukebox and the kids choose songs at no charge. On Tuesday, we did venture out to let Brandon do a little shopping. He found a Halloween costume and a few toys. We went out for ice cream, too. Our drive up there and back was uneventful...very smooth driving. Brandon watched movies in the car and we played "road games." I have to say though, he was a little moody. He told me he didn't want to go. I think he is tired of traveling so much. I also think he is old enough that the testing is starting to worry him. He knows what we are going for and it makes him nervous. On the way home yesterday, he was so much happier! He was singing in the car, laughing in the car...I could tell his spirits were lifted and he was relieved.

Last weekend before we left for Philadelphia, Brandon went to his first school dance on Friday night. It was the back to school dance. He had so much fun running around the gym with his friends. Not much dancing, mostly playing. On Saturday, he had a baseball game. We also took him to his school's football game. His friend, Chandler, plays and Brandon loves football so it was a nice treat. Brandon has another baseball game this Saturday. It is so fun to watch him on the field.

Thank you to everyone for keeping Brandon in your thoughts and prayers.

Wendy

Friday, September 12, 2008 2:50 PM CDT

Again, I have to tell you how blessed we feel! Brandon was honored again this week. Last night, we made our way to our local Wal-Mart. We had no idea what to expect with the Wal-Mart Heart program. It was amazing! Brandon had the most fun. He couldn't stop smiling. I think he liked being the center of attention. It was a great time for the kids and for the adults. When we pulled in the parking lot, there were Wal-Mart trucks up front waiting. They lead us into the store and Brandon was greeted with lines of Wal-Mart workers clapping for him. He made his way over to the presentation area they had set up. The drivers are hilarious! We learned the Wal-Mart cheer and how to "squiggle." Those of you who were there will know what I am talking about! The Mayor from Cooleemee and Mocksville were there, someone represented the fire department and the police department. The principal and 4th grade teachers from Brandon's school were there. He was made honorary truck driver. He even received a driver's shirt with his name stitched on it and patches from TN and NC. He looked so handsome. The drivers took everyone outside and gave rides around the parking lot. It was an experience like none other. We went to dinner at Miller's with most of the drivers. What a hoot! They know how to keep you laughing.

We want to say thank you to Alvin and Susan, Ralph and all the Wal-Mart drivers. Thank you to our Mocksville Wal-Mart for hosting and to everyone who came out to support and enjoy the event. Now we know how special and fun the Wal-Mart Heart program is. These kind and loving people reached out and touched Brandon's life. Thank you!

And, I have to tell you, he wore his Wal-Mart Truck Driver shirt to school today. He was so proud of it and he looks sharp wearing it too!

On the medical front, Brandon started having some dizzy spells last Friday. He didn't tell Michael and me until Tuesday of this week, which we weren't too happy about....but, we gathered all the details from him. He was getting dizzy after self-sustained reading at school. He lies in the floor and reads for about 20 minutes. He had his regular visit at Brenner's yesterday and they checked him out. His ears were fine which ruled out fluid in his ears. They checked his blood pressure and pulse during positional changes - from lying to sitting to standing. They took a urine sample to check for dehydration. So the conclusion is that he isn't drinking enough at school and has mild dehydration. I have started sending a water bottle to school. Hopefully we've figured this out. Dr. Mosse, his doctor in Philadelphia, says she's not overly concerned. She doesn't feel the dizziness is related to the neuroblastoma or the medicine he is taking. His chemistries were normal (shows liver and kidney function.) His counts are hanging were they've been (WBC 2.4, HGB 10.2, PLT 54.)

We are leaving for Philly next Sunday (Sept 21.) The day we leave is the 3rd year anniversary of his stem cell transplant. I can't believe its been 3 years! And of course, Jake (Brandon's beagle) will be 3 years old that day! Our visit to Philly will be just like the last one. Three days of tests...

Brandon has his first fall league baseball game tomorrow at 12:00. We are looking forward to seeing him on the field again.

Wendy

Monday, September 8, 2008 10:42 AM CDT

Our Labor Day weekend beach trip was HOT. So hot, the fish didn't bite at all. But we had fun trying. Brandon took advantage of the warm weather to spend time playing in the waves. We ate good while we were at the beach!

The best way I can sum up the past few weeks is to say "We are blessed."

The fundraiser this weekend was amazing on so many levels. Christian Fun Day for Brandon Koontz was held Saturday at our church. So many fun things were taking place on the grounds around our church. Port-a-pit bbq chicken was being sold, classic cars and motorcycles were on site for viewing, people came to sing under the Arbor, police cars and EMS vehicles came out, and "Brandon Park" was in full swing. There was a raffle event for donated items. "Brandon Park" included a jumping castle, face painting, sports games, fishing game, a bunny petting zoo, and a dunking booth. Brandon loved the dunking booth - he spent quite a bit of time in it. Ashley was the first one to knock him in! There was even a little train pulling the kids around the grounds. Brandon had so much fun! There were lots of kids there - it was a blast. The turnout was unbelievable for an event that came together in a little over 2 weeks. Our church family supported us by volunteering their time to work the event and by donating items. So many wonderful people made this possible. Thank you to all of you who came out to support us. We saw lots of old friends and met some new ones. I can't tell you how much we appreciate you all!

God was with us on Saturday as he has been throughout this journey. He reveals Himself to us if we only stop and take time to see. Everyone involved with this event could tell you. When the idea first came about, we all had our doubts that something like this could be put together in just a few weeks. But, amazingly, EVERYTHING starting falling into place with little effort. Within one day, the big items were taken care of. We all began to worry on Friday when the Tropical Storm was headed this way. We woke up Saturday morning with a little rain, but by 10:00 when we all met at church, the sun was shining brightly and the sky was a beautiful shade of blue. There is no doubt that God had his hand in this. He helped get things in motion and he provided a beautiful day when we all feared of bad weather.

Brandon has started his latest round of ABT. FedEx goofed and the delivery was a day late. He started this past Thursday when he should have started on Wednesday. So far, so good. He goes to Brenner's this week for a checkup - blood counts, chemistries, and a physical. We head back to Philadelphia on September 21.

I just wanted to update you on Jaxon. He was back in the hospital with a staph infection, but was able to come home for the weekend. He heads back today to start another round of chemo. I was able to see his Grandmother and Great Aunt on Saturday at the event. I just ask that you keep little Jaxon and his family in your prayers.

On Thursday of this week (9/11/08), Brandon gets treated to the Wal-Mart Heart program at the Wal-Mart in Mocksville. The truck drivers will bring out their trucks to take kids for a ride in. Brandon will be made an honorary truck driver for the day. He will receive a cake and some gifts. It begins at 5:00 and should last about an hour. We hope to see some of you there to support Wal-Mart's program and to enjoy this special honor with Brandon!

Wendy

Thursday, August 28, 2008 10:09 AM CDT

I have so many things to talk about here! So many things to share, so hang in there this will be a long post.

Let me start by going back to the Saturday before our trip to Philly. I forgot to tell everyone that we spent the early evening at the Emergency Room at Brenners Childrens Hospital. Yes the night before we had to drive 9 hours to Philadelphia, Brandon got what we call a bright idea. Instead of walking down the steps off the back deck at our house, he decided he would try to jump off the deck which involved clearing the steps leading down into the yard. It is about 4 feet high. He made it but when he landed, he hurt his foot. He couldn't put any weight on his foot and he cried with the pain. His platelets were only around 50 so I was worried about possible bleeding from a broken bone... Anyway, we decided to take him to be seen. They were so quick! We arrived at 8:00 pm and we were back in the car around 9:45 pm headed home. He saw 2 doctors, three nurses and had x-rays done in that time. Thank the Lord he didn't have a broken bone, just a contusion. By Tuesday of that week he could put all his body weight back on his foot.

He finished his 7th cycle of ABT last Tuesday. We went to Brenner's on Thursday for a checkup. His weight was stable at 64 1/4 and his counts looked good (WBC 4.1 HGB 11.0 PLT 63.) He doesn't have to go back to clinic for 2 weeks!! WOW, a week without a doctor appointment?? We won't know how to act! He has been sick with a cold - runny nose, congestion, cough and even a low grade fever for one day. But he is slowly getting over it. It does take him longer to fight off things since his immune system is still low. Other than that he is feeling great!

Last Friday night was AMAZING! The Warthogs Game was so much fun. I don't even think I can explain it with words. So many of our family and friends came out to share the night with Brandon. It was so touching to have everyone there! Jerry and his family were instrumental in arranging this evening for Brandon. We met them at the game and had the privilege of sitting with them. It felt like we had always known each other, just a real nice family. Jerry kept things moving along all night as Brandon was treated to so many things. First, Jerry took Brandon and dressed him in Warthogs apparel - a tee shirt and ball cap. He looked so handsome! Then while the players were warming up, Jerry took Brandon out to meet them and they autographed a wooden baseball bat. Around 6:45 Brandon headed out on the field to throw an opening pitch. He was a little nervous but he did a great job. I wish you could have seen the smile on his face!! Next, they had a pizza party for Brandon and his friends. Jerry brought out a cake that said "Brandon Koontz Day at Ernie Shore Field." Jerry made a very touching speech about Brandon and why they were honoring him with a special day. He even led the kids in singing "Happy Brandon Day" to the tune of Happy Birthday. He also received four bags of Warthogs gifts - baseballs, baseball cards, tee shirts, bobble heads, batting gloves... So cute! Then came the best part. According to Brandon, "a dream come true." During the third inning, the game stopped. They called Brandon's name out and asked him to make his way to the field. He was taken out on the field. The Warthogs players lined up on the first base line. The opposing team lined up on the third base line. The announcer told of Brandon's story and asked the crowd to stand and cheer him on as he ran the bases. All of the players gave him high-fives as he made his way around the bases. The crowd clapped and cheered and stood the whole time. After we left the field, we headed back up to the picnic area where his party had been. At this point it was just me, Michael and Brandon. My baby boy, age 9, began to cry as he told us how amazing it was and how they had done it all for him. "Mom, just for me?" I cannot thank Jerry and the entire Warthog organization enough. Words of appreciation cannot touch how grateful we are. Brandon was touched and he was so happy! The game went into extra innings, but the Warthogs won! The night ended with fireworks - the last fireworks at that stadium since the Warthogs will be moving to the new downtown stadium next year. I have lots of pictures but I haven't posted them yet. They can be found on our church website at www.centerchurch.net - on the left hand side choose "albums" and then "take me out to the ballgame."

On Monday of this week, Brandon started the fourth grade! He is going to school partial days, he stays until 12:30. He gets all his core classes in the morning plus recess and lunch with his friends. He tells me that fourth grade is hard. His teachers are great. I had the chance to meet with them early to talk about Brandon and his current situation and needs. I think it is going to be a great year.

Monday was also Michael and my 13th wedding anniversary. Since it was the first day of school, we didn't plan much. I fixed his favorite dinner and we exchanged cards. Then the best thing happened. We had been having storms that afternoon and right as we were finishing dinner, the power went out. It was out from 6:15 till 9:30. What no electronics?? So, we sat down (Brandon, Michael and me) and played cards together. We laughed and shared precious time together with no background noise. Now of course it started getting dark and we couldn't see anymore so we had to stop. Brandon lit candles for light which he thought was the coolest thing. Michael joked with him about how kids had to do homework by candlelight in older times.

We are heading to Oak Island for the Labor Day Weekend. We are taking Brandon fishing. Brandon's Nana, Papaw and Ashley will be going with us. Michael is excited to go - he hasn't been on vacation in a year! We are looking forward to spending time together. Family time is so valuable to us. We have come to treasure those times.

Here is the next upcoming event. We would appreciate your support!

CHRISTIAN FUN DAY benefit for Brandon Koontz

Center United Methodist Church (www.centerchurch.net)

September 6

12:00 pm - until
Port-a-pit BBQ Chicken Plate $8.00
with beans, slaw, roll and dessert No pre-sale ticket required

4:00 pm - until
Live Music, Kids Activities, Cruise In

Please remember Jaxon Sechrest and his family in your prayers. He is a two-year old little boy from Mocksville who was diagnosed with the same disease as Brandon, neuroblastoma. He has already finished one round of chemo. His grandparents go to our Church and we are close with some of his cousins. I know this family needs all our prayers.

Wendy

Friday, August 15, 2008 8:48 AM CDT

Here are some upcoming events for you to be thinking about!

- The Winston-Salem Warthogs are treating him to a special day on August 22nd. I know a few of the details - he gets the honor of throwing out the first pitch of the game and he will meet some of the players. I can't tell you how excited he is about this!!

- Through some friends at Church, Brandon was contacted by Wal-Mart for a special treat. The Wal-Mart truck drivers will bring a couple of their big trucks out and treat Brandon. He will be named Honorary Truck Driver for a day and he will get to ride in the truck and his friends can ride too. They have other surprises like a cake and gifts. This will happen sometime in September. When I have more details, I will share them.

- There is a fundraiser planned in September as well. A teacher who works with Tammy nominated Brandon at her Church. Each year they hold a fundraiser in the spring and the fall and select a family to donate to. They so graciously selected us for their fall fundraiser. We are so grateful for this! The event is a barbecued chicken sale held on a Saturday in September in Rowan County. I know that they are able to get a match for the funds they raise, so it is a great opportunity! If you can't make it to the event, but would like to help, you can send donations to our Church as they will be involved with the event as well. The monies raised there and here will be put together towards the match. Thank you!

We welcome all of you to participate in these events with us! We would love to have friends to share these fun times with. I will post more details on each event as I get them. Let me know if you plan to come, so we can look for you!

___________________________________________________________

Our trip to Philly was a good one. Brandon's MIBG scan and CT scan are both stable. The disease is still there, its just not spreading or growing. His bone marrow biopsies showed small improvement which was a very nice surprise. The dead or dying NB cells that they found last time are gone this time which makes more room for his healthy cells to grow. I know she said one side showed less than 5% marrow disease. I am not sure what the other side showed - last time it was less than 20%. His echocardiogram was normal. Brandon will take two more rounds of ABT and we will head back to Philadelphia in six weeks on September 21. Thank you for all you prayers!

Despite all the medical appointments taking place, we managed to have a great time with Tammy and Courtney. We ended up going back to Franklin Park for mini-golf, the carousel, and ice cream/popcorn. The weather was beautiful! The kids had so much fun and Courtney got a hole-in-one at mini-golf! They spent lots of time playing at the Ronald McDonald House. We played basketball, they played with the exercise equipment and we had some serious UNO card games outside at the patio tables.

Well, now its time to move forward and focus on the next six weeks. As mentioned above we have lots of fun stuff coming up, plus school starts (shhh, don't say that too loud - Brandon's not quite ready for summer to end!)

Wendy

Friday, August 8, 2008 11:38 AM CDT

Happy Friday! Brandon had his weekly clinic visit yesterday. His counts are holding - WBC 2.9 HGB 10.4 PLT 53. His weight is holding as well at 64 1/2. This week's visit at Brenner's was a quick one since we will be in Philadelphia on Monday for a couple of days for complete disease evaluation.

We leave on Sunday and will be heading home late Wednesday. It is the same type of visit we had in July - bone marrow aspirates & biopsy, CT scan, echocardiogram and MIBG scan.

Once we get this trip behind us, Brandon has lots of fun stuff coming up.

- The Winston-Salem Warthogs are treating him to a special day on August 22nd. I know a few of the details - he gets the honor of throwing out the first pitch of the game and he will meet some of the players. I can't tell you how excited he is about this!!

- Through some friends at Church, Brandon was contacted by Wal-Mart for a special treat. The Wal-Mart truck drivers will bring a couple of their big trucks out and treat Brandon. He will be named Honorary Truck Driver for a day and he will get to ride in the truck and his friends can ride too. They have other surprises like a cake and gifts. This will happen sometime in September. When I have more details, I will share them.

- There is a fundraiser planned in September as well. A teacher who works with Tammy nominated Brandon at her Church. Each year they hold a fundraiser in the spring and the fall and select a family to donate to. They so graciously selected us for their fall fundraiser. We are so grateful for this! The event is a barbecued chicken sale held on a Saturday in September in Rowan County. I know that they are able to get a match for the funds they raise, so it is a great opportunity!

We welcome all of you to participate in these events with us! We would love to have friends to share these fun times with. I will post more details on each event as I get them. Let me know if you plan to come, so we can look for you!

Please keep Brandon in your prayers for next week. We know how powerful the gift of prayer is. Your prayers have helped us through every step of this battle.

God Bless,
Wendy

Sunday, August 3, 2008 12:48 AM CDT

We've had two clinic visits since my last update. The visits have gone well. In fact, the one from two weeks ago was wonderful. His counts were their highest since he's started the ABT. WBC 2.2 PLT 63 HGB 10.2 Then we went again this past week and they were down a little. WBC 2.0 PLT 54 HGB 10 This is due to the cycle of ABT he just finished on Tuesday. So, as of now, Brandon has completed 6 cycles of ABT. I've noticed if he doesn't eat enough before taking the ABT, he gets a tummy ache that lasts about an hour. The ABT also affects his appetite during the week he takes it and usually the week after. Its a battle sometimes to get him to eat. We really have nothing to complain about though. It is fairly simple to take the ABT and it seems to be working to keep the beast at bay. I just pray it continues.

I usually have upbeat posts and try to steer clear of the negatives, but sometimes it is overwhelming. Looking at Brandon, you wouldn't know about the battle going on in his little body. He looks good. He's got a tan this summer and the sun is lightening his hair. Brandon did have a heart to heart with me this week about things. He told me that most of the time he doesn't think about the neuroblastoma. But when he struggles with his weight or we go to Philly, he thinks about it and it makes him sad. He said he worries what will happen to him. He told me he wished they would find a cure.

This past week, we lost another warrior to this nasty disease. A 14-yr old girl from SC named Katie. She was battling relapsed NB just like Brandon. Please remember Katie's family in your prayers.

We are going to Philadelphia next Sunday. Tammy and Courtney will be going with us this time. I am excited that Brandon will have Courtney to play with at the RMH. This visit will be just like the last - on Monday he will have bloodwork and urine tests and he will be sedated for bone marrow aspirates and biopsy, on Tuesday he will have CT scan, MIBG injection, and echocardiogram, and on Wednesday he will have MIBG scan and meet with the doctor to go over results. Its a busy week to say the least. Brandon has to endure so much. Brandon is so brave - handling the needles, the medicines, the tests. He has to spend so much time in the hospital or in a medical environment. I just want to say that we couldn't have made it this far on our own. By God's mercy and grace, he makes a way for us. He has made the unbearable bearable. He surrounds us with all the things we need.

Wendy

Saturday, July 19, 2008 9:50 AM CDT

We had a GREAT clinic visit! Brandon's counts look wonderful compared to the past few weeks! White Count back up to 1.9, Hemoglobin 10.0, and Platelets 60!! His weight was 64 lbs! Brandon earned a trip to Toys R Us!

While we were at clinic, I noticed a group of people walking over to the inpatient unit. They had on what looked like baseball jerseys. I was right! Brandon got to meet 2 pitchers from the Winston-Salem Warthogs. He got an autographed picture and he spent some time talking to them. I wished he had talked more, because the guys were very pleasant to look at!! :0)

Yesterday his cousins, Courtney, Carissa and Jackson came over to swim and play on his waterslide. We had so much fun!

Ian and Rylan are on their way to our house now for swimming. We will cookout hamburgers with Robyn and Keith at lunch. Tonight is Vacation Bible School Kickoff. Sounds like a great way to spend a Saturday!!

Wendy

Wednesday, July 16, 2008 8:39 AM CDT

Brandon finished his latest round of ABT last Tuesday. He is currently enjoying the 14 days off part of the 21 day cycle. We went to Brenners last Thursday to check counts. Surprisingly, his white count had dropped to 0.7 - yes, 0.7. We have to be extra careful for fevers when he drops that low. So far, so good, no fevers. His hemoglobin held at 10.1 and his platelets were 44. All we can do is wait till this week to see if the white count turns around. Dr. Mosse said its possible he is fighting a virus but is asymptomatic. Our bodies fight things off all the time, but we just don't know it. We are checking his numbers every week, so we are able to see the fluctuations. We will find out on Thursday if his white count has turned around.

The Fourth of July was wonderful. We had two cookouts - one with Michael's brother, Keith, and one our house with my parents. Brandon's friend, Chandler, spent the day with us, too. Brandon's cousins, Ian and Rylan, came swimming with us. We set off fireworks at our house. I have to admit it was one of my favorite 4th of July's. Brandon had fun with our own fireworks. We decided to stay home this year, we usually go to the fireworks in town. But this year, we've already seen fireworks twice, once at the Intimidators game and then again at the beach. So, we tried something different and it was a blast!

Brandon has been swimming alot. He asked that we put up the inflatable waterslide he got for his birthday. So, on Saturday we hooked it up. A few of his cousins (Ian, Rylan, & Courtney) came over to play on it. Chandler and Nathan came too. It was kind of last minute, but it was so much fun. Ashley and my Mom went down the slide. I took lots of pictures! On Monday, my Dad and Ashley took Brandon fishing. He brought two home with him. I'm not sure what he planned to do with them, but they were alive in a bucket of water. I guess Papaw did something with them.

Next week is Vacation Bible School at our Church. We have the kickoff this Saturday. I am excited. I think it is going to be lots of fun.

I'll update after Brandon's visit to the clinc on Thursday.

Oh, I almost forgot to share some good news. When I talked to Dr. Mosse (from CHOP) she shared with me that his urine test showed normal and so did his echocardiogram. So, I'll end this post on that good note!

Wendy

Thursday, July 3, 2008 8:24 AM CDT

We're home! We made it back home around 9:30 last night. I am still amazed at what you can do in a day's time!

Brandon got a good report in Philadelphia. His MIBG scan looks exactly the same as last time, his CT scan still shows that the tumor on his spine is gone, and the best news is that his bone marrow has improved! His platelets needed to be 54 to start another round of ABT and yesterday they were 55! So he was able to start his 5th course yesterday at lunch. His doctors are "very pleased" and constantly comment on how great he looks. We will return to Philadelphia in 6 weeks to repeat the tests we just did. He will have 2 cycles of ABT during those 6 weeks while we are at home.

Thank you for your prayers. We are so blessed that the ABT is keeping this disease stable and Brandon is feeling so well. God continues to take care of us through this and we want to give Him all the praise. Without Him, we couldn't have made it this far.

Our trip was uneventful. I don't really have any cool stories to tell about our roadtrip. Unless you count hearing "Ice, Ice Baby" by Vanilla Ice on the radio...? Does that count? Maybe for me, since it reminds me of being a teenager.

We did some fun things in Philly. Ashley had a gift card, so she treated Brandon to his favorite restaurant, the Hard Rock Cafe. We went to Franklin Park for miniature golf. The course was themed for Philadelphia. Brandon got a hole in one. His favorite, though, was on a hole that showed off the sports teams in Philly. There was a field goal post at the end behind the hole. Brandon hit his ball so hard it bounced off a mound in the middle and it bounced so high it went through the goal post and landed in the water. So, Brandon scored a field goal playing miniature golf! We had ice cream in the park. There was a carousel and a huge sand sculpture.

We plan to spend the Fourth at home. We will spend time with our family cooking out, swimming and fireworks.

Wendy

Friday, June 27, 2008 11:36 AM CDT

The beach bums are back home. We left for the coast last Thursday after Brandon's clinic visit. (His counts were fine but his weight was down a little.) Ashley, me and Brandon headed to Wilmington and met my parents to stay at Carolina Beach with them Thursday night. We had a wonderful time with them. We played in the sand at first, Brandon wasn't 100ure about getting in the ocean right away. We walked up to the marina to see what the fishing boats had brought in. It was very interesting - Brandon saw them cleaning and cutting some Red Snapper fish. They had already bagged shark meat and grouper. He asked them what kind of shark they had caught. Brandon is very interested in sharks. They had caught sand sharks but the fisherman told him they have seen tiger sharks. We ate dinner with Nana and Papaw and headed over to the Boardwalk to the arcade. We were surprised when they set fireworks off. Friday we spent the morning on the beach with Nana until the storm clouds rolled in. We had lunch with them and then left to go to Oak Island to stay with Tammy and Courtney. We rode the Ferry from Ft. Fisher to Southport and arrived at the beach house around 3:30 pm. We spent some time on the beach and then played board games at the house that night. On Saturday, we had rain so we headed to Southport to this cool toy store for kids. Brandon and Courtney always love to go there. We watched a movie at the house. Sunday we had a special treat. Nana and Papaw headed over to Oak Island before the left for home. The sun was shining and it was a great "beach" day. Brandon and Courtney played in the ocean and we girls tried to get some sun. Brandon was sad when Nana and Papaw left. We stayed on the beach with Tammy and Courtney for most of the afternoon. We grilled hamburgers for dinner. We loved sitting outside with the ocean breeze blowing. On Monday, more of our family arrived. Brandon's cousins, Carissa and Jackson along with their parents, April and Tom, spent Monday on the beach with us. We played in the ocean, in the sand and even played football. That night we had pizza at their house and played board games and the kids played. While we were at Oak Island, Brandon saw more "sea life." We came across a nest of sea turtle eggs that had hatched. There were about 15 open egg shells. It was very cool. They dug up a dead jelly fish that was pretty big in size and swimming at the edge of the ocean were three skates.

On Tuesday, we left Oak Island and Tammy and Courtney. We hated to say goodbye. We had so much fun! We rode the ferry back to Ft. Fisher and met up with Brandon's friend, Chandler who was staying for the week with his family. We spent a few hours with them riding the waves and playing football on the beach. The kids had a great time. We cooled off in the pool and then loaded up to head home. Brandon didn't want to leave and Chandler said he wanted to come home with us! It was fun spending time with Chandler, Nathan, Pebbles and Johnny.

We were happy to be home to see Michael and Jake. We've been unpacking and getting laundry done since I have to pack again tomorrow. We leave for Philadelphia early Sunday morning. Yesterday's clinic visit at Brenner's showed his counts down some more, but his weight is back up to 63 1/4!

Please keep Brandon in your prayers this week. He has a busy schedule. Monday he will have bi-lateral bone marrow aspirates and biopsies and lots of lab work. He will be sedated for the bone marrow procedure. On Tuesday he will have a CT scan, an injection for a scan on Wednesday and an echocardiogram. On Wednesday, he will have the MIBG scan and meet with the doctor to go over the results of the tests.

Love,
Wendy

Wednesday, June 11, 2008 8:42 AM CDT

Everyone's been giving me a hard time about not posting! I guess its a good sign - it just tells us how many of you care about our little man!

We have been busy, busy, busy! Let me start by updating you on all the activities Brandon has been participating in. First, I'll start with school. His last official day of school was Friday, June 6. There was so much fun stuff happening at school at the end of the school year! Brandon was able to attend most of it. He went to field day and surprised me by completing most of the events to earn a blue ribbon. He enjoyed being with his friends from school. Then he went to the end of the year party. I volunteered to help and was lucky enough to get teamed up with Sarah's Mom (who posts in the guestbook, alot.) We worked at the "Rest Station - Ice Pop Station." It was nice because we were located under a huge tree and we could spend time with the kids. They would get an ice pop and take a break. Lunch that day was hot dogs outside. I just sat back and watched him with his friends. It made me so happy to see him having fun. Another day at school they had a karaoke contest. Mrs. Potts told me how Brandon had stayed back and told them he wouldn't sing, but when he heard some of the others he decided to join in. He sang Jesse McCartney's song "Beautiful Soul." Mrs. Potts said they called other teachers in to listen because the song took on a new meaning when they watched Brandon sing it. They also had yearbook signing and made homemade Frosty's for the kids. On the last day of school they held Awards Day. I knew Brandon was getting recognition for making honor roll all year, but I assumed that would be all since he wasn't actually at school to be considered for other awards. So, I was the only one from our family who went. Thank goodness I took the video camera. First thing, the Principal, Mrs. Morrison, invited Brandon's teacher, Mrs. Hendrix, up front to make a special presentation. She began to speak about Brandon and how much of an inspiration he is and how he has taught her this year. Her words were beautiful. The children in his class had each taken a quilt square and drawn a picture for him. They put it together using ribbons and Chandler and Kayla from his class held up the beautiful quilt for everyone to see. As Brandon made his way up front to receive his special gift, everyone there gave him a standing ovation - students, parents and staff. The whole thing just brought tears to my eyes but also a smile to my face. It is amazing to see how many people's lives are touched by Brandon. It was a day I will never forget. As I mentioned, he received honor roll all year. He passed his EOG's (end of grade testing.) So, on the last day of school as we were leaving the school, I said to Brandon, "Well, now your a fourth grader." He told me, "No, not till we pull out of the school parking lot to end the third grade."

The weather has been unseasonably hot - reaching up to 100 last week. Brandon spent a lot of time in the pool with his friends and family. He's already getting a tan even with all the sunscreen. On Friday, June 6, we took Brandon to a Kannapolis Intimidators baseball game. He received tickets to the game from his cousins Carissa and Jackson for his birthday. My Mom and I took Chandler and Brandon down early. My Dad, Michael and Ashley came down after Michael and Ashley got home from work. It was so hot! The kids had pizza and popcorn and Sno-Cones. They played catch with the free balls they were giving out at the game and their ball gloves they took with them. The game ended with a huge fireworks show. I wish I had a picture of Brandon's face. At one point during the fireworks, I glanced over at him and he looked so sweet. His head was tilted back as he was looking up at the fireworks, his mouth was open a little in awe of the display and his eyes were sparkling. I could have squeezed him with the biggest hug. But he's nine now and his buddy was there and I would have totally embarrassed him, so I held it back and recorded it here so I can remember the impression it left on me! On Saturday the 7th he went to Chandler's tournament game at the Davie Little League Complex. They ate lunch together and of course came home to get in the pool to cool off. That afternoon was the End of the Year Party for baseball - back at the complex. They had an inflatable slide and jumping house, face painting, music and food. We stayed for a little while and Brandon spent some time with his teammates from Baseball. Brandon's baseball season ended on Monday night of last week - June 2nd. Brandon had a great game. He got a hit with two strikes on him. It went to the grass which scored his teammate who was on third. Brandon stole second and third. Luke came up to bat and Brandon scored! He was very proud of that inning! He's going to miss his playing baseball - miss his coaches, his teammates. Hopefully he will play again in the fall when they have Fall Ball.

Sunday was a very special day for us. Our Preacher was out of town at a conference and the Church asked our Sunday School Class to lead the service. We've been preparing for a few weeks and it all came together Sunday morning. Our class took over choir duty and we chose to sing Chris Rice's "Go Light the World (The Candle Song)." Michael was the speaker giving the message on Sunday. It was a wonderful day. His message brought tears to my eyes! I was so proud of him for getting up there and talking from his heart. Our whole class did a wonderful job. It shows you just what you can do when you all come together! We left Church and our whole class went to lunch together.

Last night was a special treat. Brandon's baseball Coach, Jon, plays softball for his Church and Michael plays for ours. Last night our Churches played against each other. Jon played and Michael played. Jon's boys, Luke and Lane, who played on Brandon's baseball team were there. Brandon had a blast - he played with the boys, he watched the game, he gave Jon a hard time! Afterwards, we went to dinner with Jon and Amy and the kids. We had so much fun!

Next week, we are heading to the beach with Brandon's cousin, Courtney. We are so excited about spending time at the beach with them. This message is for Tammy - SUNSCREEN, remember the SUNSCREEN. Can we try something higher than SPF 4? :o)

Now to the medical news. We've been to Brenner's once a week on Thursdays for Brandon's checkup. His platelets have been holding steady! 54 and 55. So, it appears the dose reduction has helped. His platelets aren't as affected as they were with the original dose. Today he starts another round of ABT. He will take it for 7 days and then have 14 days off. On June 29, we head back to Philadelphia for disease evaluation. They will do bone marrow aspirates and biopsies, CT scan, MIBG scan, echocardiogram, urine tests and bloodwork. We pray that the ABT is continuing to keep his disease stable and we still hope for the miracle of a cure.

Love,
Wendy

Thursday, May 22, 2008 9:25 AM CDT

Sorry its been so long since my last post. We've been busy.

Let me start with the platelet situation. We returned to clinic last Friday for another check and the platelets were up to 48! He needs 54 to start a reduced dose of ABT. We re-checked them on Tuesday of this week and shockingly they were exactly 54! CHOP overnighted the medicine to me and Brandon had his first dose yesterday after lunch. What a relief! We are happy he is back on the medicine! It is scary when he has to go a couple of weeks without any medicine!

He's feeling great. Playing outside everyday - on his trampoline, playing baseball, launching rockets, just having so much fun!

This week at school the kids have to take their EOG's - End of Grade tests. Third grade is the first year they take them. They have to achieve a certain score in order to pass their grade. Brandon is able to take his at home, so Mrs. Hendrix has been coming to our house for the past two days and administering the test. Each day the test has lasted a couple of hours. Friday will be his last day.

Ashley returned safe and sound from her mission trip on Sunday night. My Mom and I went to Charlotte to pick her up at about 11:00 pm. It was so good to see her. She brought Brandon some cool gifts from Yellowstone and the Indian Reservation. Her pictures are beautiful! The Rocky Mountains and Canada are breathtaking!

We had a sad moment at our house this week. On Tuesday night, we went to give Timmy the hamster a treat and found he had gone to sleep but never woke up. We had seen him the night before running in his wheel. So, at 10 pm we were out back with flashlights and a shovel burying Timmy. Brandon cried. Timmy was the best hamster. He never bit and he would let you play with him anytime you wanted to. Brandon has decided not to get another hamster just yet. He thinks it will be impossible to find another Timmy.

So, now that he's back on the ABT, we will go to Brenner's once a week for bloodwork and a physical. We will return to Philly in 6 weeks - June 29.

Have a great Memorial Day Weekend. We don't have plans - we'll just be at home together...which is perfect.

Wendy

Tuesday, May 13, 2008 8:35 AM CDT

Let me start by saying how wonderful my Mother's Day was. I am so honored to be Brandon's Mom. I remember my first Mother's Day. We had been home only a week or so from the hospital. Brandon was a newborn. He was so precious and I loved him so much. Over the past 9 Mother's Days, those feelings have only grown. I never knew how much I could love someone until the day I became Brandon's Mom.

Sunday was so special. Before Sunday School, the youth group at church arranged a breakfast to honor the Mothers. During worship, the kids sang a song as a group for us. Then, they took turns calling up to the front of the Church each Mom. Each child had a flower for their Mother and they had written a message too. I was surprised when the kids took turns reading their letters to their Moms.

Here was Brandon's letter:

Dear Mom,

You're special because you take me to the hospital when its time for a check up. You buy my clothes, toys and food. You help clean my room. I'm serious, you're the best Mom ever.

Luv, Brandon

When we got home, Michael and Brandon cleaned (well, straightened up) the house. Brandon gave me roses, a cross necklace, a new coffeemaker, a Barbie Doll and a movie (27 Dresses.) Okay, either this boy loves me a lot or he likes to shop! Michael said Brandon picked out everything. He knew exactly what he wanted to get for me! We spent the afternoon together. We even had a cookout with my parents for dinner.
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Mission Trip News:

Ashley keeps telling me that we have to take Brandon to see how beautiful that part of the country is. They spent one day at Yellowstone. She called me while she was standing outside Old Faithful. They traveled to the Indian Reservation in Montana Saturday night. She said it was definitely interesting. Not a street light anywhere. They started Bible School Sunday afternoon. They are actually staying overnight at the Church during Bible School. She shared a story yesterday that reminded her of the true reason they are there. A little boy from the Indian reservation called the Church yesterday afternoon. He is 12 years old. He asked if he could come and stay at the church because both his parents had been drinking since lunch time. She said it touched her to know she was there to help.

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I took Brandon to clinic at Brenner's yesterday just to check those platelets. He needed 54 to start the ABT again on Wednesday (Day 28 of the cycle.) Well, to my disbelief the platelets had dropped to 36. So I put in a call to CHOP. Brandon's doctor explained that his test results last week were encouraging and so they knew the ABT was showing toxicity to his platelets. She said we have until Day 42 for his platelets to improve to 54. As long as they make that goal, he can start ABT but at a lower dose. So for the next two weeks, we sit and wait.

More good news, Brandon's urine test from last week's visit is normal. This test is a marker for active NB. They check 2 hormones. NB cells release these hormones as they are splitting and growing into more cells. So they can use this to help with following his disease.

Just continue to remember Brandon in your prayers. We fully believe in the power of prayer. Your prayers have helped us more than you will ever know!

Wendy

Friday, May 9, 2008

IF YOU WERE FOLLOWING THE NEWS STORY mentioned below regarding the research development on NB, I have a new update. Scroll down - I added it to the bottom....

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Friday, May 9, 2008

I just wanted to add a quick post this morning. Yesterday's post is still below for those who haven't read Brandon's report.

I was so involved yesterday with Brandon that I forgot to mention my sister, Ashley. I want to ask that you say a little prayer for her as she travels. She leaves Charlotte this morning on a Mission trip with a Christian group from college. She attends UNC-Charlotte. Her trip will last 10 days. They are flying into Salt Lake City today and will then travel to Jackson Hole. Their mission trip includes heading to Montana and Canada. She will be teaching Bible School at an Indian reservation and she also had to take work gloves and such for other activites - I am assuming building or cleaning at a Church. She will be a busy young lady. Brandon is going to miss her so much! But I am very proud of her for going to do work for the Lord. When I get news from her, I will share what is taking place in her life on this website too.

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Thursday, May 8, 2008

We are home, safe and sound. We left Philadelphia yesterday around 12:45 pm after the meeting with Brandon's doctor. We were home at around 9:00 pm.

Overall, the news is great. The ABT did what it was supposed to do. The disease is stable. The bone marrows and MIBG scan were the same as last time. Dr. Mosse was pleased that the medicine did its job. There was a bit of surprising news - the tumor mass that remained on his spine is now totally gone. His CT scan is normal now. We were thrilled! More great news was that on Monday morning before anesthesia, they checked his blood counts. We were all expecting to need a platelet transfusion since platelets had dropped to 26 on Thursday. We almost fell out of our chairs when the count came back at 46! He didn't need a transfusion!!! Dr. Mosse said they had been worried when the platelets were dropping. She said ABT has dropped platelets in patients before, but it wasn't a common side effect. She was worried that the NB in his bone marrow had taken off. They spent a lot of time studying the bone marrow and feel that the ABT is the reason his platelets dropped. The diseased part of his marrow looked the same when compared to the last bone marrow biopsy. (Hence, stable disease.) The "healthy" part of his marrow when compared to the last biopsy does appear tired. Tired from apparently the ABT. So, we are definitely relieved about the platelets.

So, here's the plan. His platelets have to be at 54 to start the next dose of ABT. We go to Brenner's on Monday for blood counts. If the platelets are 54 or higher, he will start the next round of ABT. If he hasn't quite made it, we wait for him to increase and the dose of ABT he is taking will be lowered. Dr. Mosse said not to worry about lowering the dose, their experience with the medication was "if ABT is going to work, it will work even at a lower dose." The study allows two dose reductions. Some kids need a dose reduction for other side effects, especially the pain in their feet and hands. We will know more on Monday concerning our plans.

Thank you for your thoughts, kind words and especially your prayers. We are celebrating in our latest news and relieved. We pray that the ABT continues to work for Brandon to keep the NB stable and quiet.

We had a good time in Philly. We had lots of appointments so we spent a lot of time at the hospital. We managed to head over to Center City to the Reading Terminal Market. It was very interesting. There were so many places to eat, fresh flowers for sell, bakeries and candy shoppes displaying all their yummy treats, jellies and crafts from the Amish, and Brandon's favorite, the meat markets. He got a kick out of the fish markets - octupus, squid, whole fish that were cool to see, shark meat and even frog legs. We left the Market and walked to the Hard Rock Cafe, Brandon's favorite restaurant in Philly. He ate 2 hamburgers there! We also rode over to the Art Museum area to see the house we lived in during his radiation in 2006. We bought some Philly Cheesesteaks off one of the street carts and ate outside at a little table. I have to say this was my favorite part. The weather was perfect. Brandon was happy (he had McDonald's not a cheesesteak...he is a picky eater you know!) The sounds of the city and all the hustle and bustle was going by us.

Here's a funny thing - Wednesday morning at 4 am the fire alarm went off at the Ronald McDonald house. I immediatlely jumped up, I mean the flashing lights and the sound of the alarm was enough for me. My Mom kinda slumbered around and I told her "It's the fire alarm." Then she kicked into high gear. Brandon just laid in the bed. My Mom tried to wake him and he just covered his head and mumbled "no, uh uh" until she said, " Brandon, It's the fire alarm." Then he too jumped up. When the alarm goes off, there is a recording that tells you to head to the nearest exit. Brandon admitted later that he thought it was the announcement that is made for the vans to take parents to the hospital. It was funny to hear him imitate the recording and instead of it saying something about a fire and heading to the front exit, not to use the elevator, etc. the message Brandon says is "Attention Families, the Van for CHOP will be leaving shortly. Please meet in front of the kitchen." Well, here we are in our PJ's standing outside in front of the Ronald McDonald house waiting on the fire department. No one saw a fire or smelled smoke. When the fire department arrived, they checked the room were the alarm triggered only to find no one was even in the room. They still don't know what set off the alarm in that room. Never a dull moment with us, huh? We seem to always have a story to tell from our trips to Philly.

Today is my Dad's 75th birthday! (Happy Birthday, Paps! from Brandon.) Brandon has a baseball game this afternoon. It's good to be home and with good news at that!

Love,
Wendy

Thursday, May 8, 2008 1:00 pm

After this post, I checked my email and found out even more good news. Check out the link to a news article about Neuroblastoma. The hospital featured is Brandon's hospital in Philly and the doctor is one of Brandon's doctors. I have an email in to his doctor to fully understand what this latest development means. I guess I need the info in my terms not the medical terms. We are taking this as a good thing - to find a solution to a problem, you must first get to the core of the problem. Our hope is that the chromosome discovery will lead to finding a cure for NB. Miracles still happen and we are still believing in the Giver of these Gifts!

http://cbs3.com/health/Health.Alert.Neuroblastmoa.2.718393.html

You'll have to type this address in your address bar to watch the video. I don't know how to add a link to this webpage. Sorry.
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Friday, May 9, 2008 11:30 am

Here's the info as explained to me by Brandon's doctor involved with the research. I just received this:

Doctor's words:

"The NEJM paper that came out of our lab on Wednesday shows some very elegant science that is not easy to explain but gives us some hints as to what children with neuroblastoma have in common in their DNA. It is exciting because it gives us some clues about where to look for genes that may impact the development of neuroblastoma and may in the future give us another marker to help diagnose patients and to help follow their disease. We still have a lot to learn and this new information does not help us to understand how to treat NB better. "

My words:

This disease is so complicated and nasty! We still have hope. We feel developments like this are definitely positive. We need research. Research will lead to the cure!

With hope,
Wendy

Sunday, May 4, 2008 7:34 PM CDT

We are in Philadelphia for the next few days. My Mom came with us on this trip. We drove up today and hopefully will be heading home late Wednesday or early Thursday. This week is the week for disease evaluation - MIBG scan, CT scan, bone marrow aspirate and biopsy, urine and bloodwork and an echocardiogram.

At our last clinic visit at home, Brandon's platelets continued to drop and we are definitely concerned. He was borderline needing a transfusion on Thursday (platelets were 26.) Is it the ABT causing the drop or is it the NB? We will find out this week what is going on. He's been feeling fine, just bruising alot from the low platelets. Please remember Brandon in your prayers. I think Michael and I could use some too, its been stressful to say the least.

But let's get to some good stuff. Brandon's birthday was a blast! We toughed out a thunderstorm and heavy rain at his outdoor birthday party. We will never forget being huddled up under Nana's carport with the rain beating down while eating cake. Oh, I was right - he chose a baseball theme for his party. We planned lots of cool games - baseball fishing, musical bases, a relay race, and many more. Brandon received so many wonderful gifts for his birthday. I think our house is busting at the seems with toys. He's already been shopping with some of his money and gift cards. He's bought a new baseball bat, several videogames and has downloaded songs for his i-pod.

Brandon's doctors have allowed him to play baseball even though his platelets are low. In fact, they encourage him to play since he loves it so much. Click on the link above that says "View Photos." I uploaded a few pictures from the game he played on his birthday. Thanks, Coach Wormie, for the wonderful pictures!

I need to go. We've got lots to do tonight. Brandon needs a snack - he can't eat after 11:00, he gets anesthesia before the bone marrows tomorrow morning. He needs a bath tonight - he will have his port accessed tomorrow and it will have to stay accessed overnight tomorrow night plus he will have the bone marrow sites so he can't take a bath tomorrow night.

I'll update as I can. We hope to get in some fun stuff tomorrow afternoon or Tuesday afternoon. Brandon's Papaw (my Dad) will celebrate his 75th birthday on Thursday. So, we may do some birthday present shopping!

Love,
Wendy

Wednesday, April 30, 2008 9:26 AM CDT

H A P P Y 9th B I R T H D A Y, Brandon!!

We love you more than words can express. You are the most wonderful son. We are so proud of you. You have become an amazing young man. Nine years old!! The best nine years of our lives so far! Thank you for making us smile, laugh and even cry. You are a blessing from Heaven. We thank the Lord everyday for giving you to us nine years ago today. We love you.

Lots of hugs and kisses,
Mom and Dad

Friday, April 18, 2008 8:32 AM CDT

This latest trip to Philadelphia is done. It was a very quick trip. I find it amazing to know what you can do in a 24-hour period. You can start out in small town, Cooleemee, and end up in big city, Philadelphia, and return to small town, Cooleemee. You may need some sleep afterward, but you can do it.

A few of my travel plans changed. After we