History

Thursday, June 25, 2009 8:54 AM CDT

I’ve been sitting here trying to find the words to type. I am afraid that too many of my emotions will come through and you probably wouldn’t want to read that. So bear with me as I fumble through this and try to explain this.

We met with the doctor yesterday and it wasn’t good at all. Brandon’s MIBG scan shows new spots of disease and the bone marrow biopsy shows that his marrow is “packed” with NB. This explains why his counts have dropped so drastically. His bone marrow has no room to grow since the disease has taken over the marrow. The doctor has no more tricks up her sleeve. We are in a terrible place. Everyone is amazed at how great Brandon looks on the outside when compared to how things look on the inside. We came home yesterday after a long day at the hospital. We made it home around midnight last night.

Brandon met with the team separate from me so he could talk to them alone. When I went in to talk to them, Dr. Mosse shared with me the one and only question that Brandon had. “Okay so what’s the next step? What are we going to try now?” He also wanted to see his scan, so she showed it to him. The only thing she could do now is give him an oral chemo pill (low dose) in combination with the drug Celebrex. Her hope is that maybe the chemo will clear up a little space in Brandon’s marrow to allow his marrow to grow something since it looks like it isn't growing anything at this point. This is a longshot, but we are going to try it. By no means is it a cure, we just hope for more time. She also discussed calling Hospice for assistance. I don’t even want to talk about that.

The drive home yesterday was a bag of mixed emotions. I know that God had his hand on our car and led us home. Some times I was so deep in thought that I don’t remember parts of the drive. Brandon watched movies and slept in the car. When he was awake and not under the blanket with the DVD player, we had lots of fun times. We sang songs and laughed a lot. Being with him and sharing those moments is what helped me get through the day yesterday. He looks good and he feels good. That's my saving grace at the moment.

Brandon needs your prayers now more than ever. Our family needs prayer for strength and understanding. We still hope and pray for a miracle, for Brandon to be healed and totally free from this disease. Now it feels like we are hanging by a thread to that. I know this is not about me. This is about Brandon and his life. And I will do everything I can and I will give him everything I can but it just doesn’t feel like enough right now. And the truth is, Brandon IS my life. I love him with all that I am.

Wendy

Monday, June 22, 2009 4:22 PM CDT

Hey everyone. We are in Philadelphia. The drive up yesterday was nice, heavy traffic, but nice. We left home around 8:15 yesterday morning and arrived around 5:00 - just in time for dinner. A local sorority was fixing spaghetti for dinner and to my surprise, Brandon ate it and really liked it! We settled in our room, Brandon watched a movie and we called it an early night (sometime around 11!)

This morning we had to be at the hospital at 8:30 to check his counts prior to the bone marrow biopsies. His counts were quite shocking and we don't want to think too much into them: WBC 1.7 HGB 6.8 PLT 14. Brandon needed a platelet transfusion and blood transfusion before they would do the procedure. So instead of being one of the first kids to go, he ended up being one of the last somewhere around number 7 or 8 today. (He can't eat after midnight the night before or the day of, so it was a long day waiting!) He went in for anestheia around 12:40 and was back out a little after 1:00. He had some oozing out of one of the sites, so they had to re-bandage it. I guess it bled from the low platelets. He's an amazing kid though. He didn't ask for any pain meds and he got up out of bed when the anestheia wore off and asked for spaghetti!

So we left the hospital and have been at the RMH since around 3:45. He finally ate and is now playing the xbox 360. Nana is outside talking to Papaw on the phone. The weather is much cooler here and everyone is talking about all the rain. It has rained for 12 days straight here. Guess the rain we had in NC made its way up here too.

The low dose MIBG treatment that was scheduled for Wednesday afternoon has been re-scheduled for Thursday. We need to meet with the doctor and go over the results of the tests and re-check Brandon's counts before we go forward with this treatment. So there is a lot weighing on our hearts and our minds. Please just continue to pray for Brandon and pray that God will continue to lead us. I guess after Wednesday's appointment we will know more.

Wendy

Monday, June 15, 2009 7:43 AM CDT

On Friday, Brandon needed platelets again. His counts were WBC 1.3 HGB 9.8 PLT 7. Yes, "7"! What happened? We want them to go up! We go back on Wednesday to re-check his counts.

We found out we have to leave a day early to go to Philly. They want to add a bone marrow biopsy to the list of things we will be doing that week. The sad part is we will be leaving Michael on Father's Day to drive up. Nana is making this trip with us.

Brandon has been swimming and playing with friends this week. We went to see the movie UP yesterday with a group of friends from church.

Please keep Brandon in your prayers.

Wendy

Tuesday, June 9, 2009 1:31 PM CDT

Platelets still haven't recovered! On Thursday of last week, we had his counts rechecked. WBC 1.5 HGB 10.8 PLT 22 So we held off on the platelet transfusion and rechecked again on Saturday and they were WBC 2.2 HGB 10.8 PLT 14. So we headed to Brenners to get a platelet transfusion!

I haven't posted what the normal numbers are for the counts in a long time. I post the counts on here for my benefit of looking back to see trends, but I think I should remind you of what you are looking at.

WBC = "white blood cell count" white blood cells fight infection (normal range 4.50 to 11.50)

HGB = "hemoglobin" a protein in red blood cells that carry oxygen (normal range 14.0 to 18.0)

PLT = "platelet count" platelets help your blood to clot (normal range 150 to 450)

**The normal range varies slightly from lab to lab. These are the ranges on the reports we are getting from the lab in Mocksville.**

Brandon also had a cardiology visit on Thursday of last week. His visit went great. Dr. Cook says she is very pleased with how things look. She feels the medicine she prescribed is keeping things stable. His shortening fraction was 27 this time, its been in the low to mid 20's. This measures how the left ventricle is working to pump the blood. We go back to see her in October.

We go back to check counts tomorrow. I am hoping and praying that those platelets have started the turn! We are still holding out for platelets above 25 to give Brandon the option of two other medicines. We are scheduled to be in Philadelphia the week of June 22. He has until then to get the platelets up! He is penciled in for another low dose MIBG (overnight stay in the hospital.)

On Saturday, Michael played in the Toys for Tots golf tournament so I took Brandon and Sadie to Hanging Rock. Ashley and Nana came too. We had a wonderful time! We hiked to the waterfall and the kids played in the water. We went fishing on the lake. The fish weren't biting. I think they caught a few tree limbs and some salamanders. Then we ate dinner together. On Sunday, we went to Church and went swimming that afternoon. Yesterday Brandon went to school for the 4th grade ice cream social and yearbook signing. He came bouncing out of school with a huge smile on his face. He had an awesome time! Today was the last day of school and it was awards day. We were notified that we should come that Brandon would be recognized. Michael managed to get the morning off and he went with me and Ashley. Brandon was recognized for making all A's again this semester. Then they announced that he had made A Honor Roll all year long. Everyone cheered for him and he even received a standing ovation. It was so touching to see how much everyone cares for him. They had me tearing up in the gym at school! So, Brandon is now a 5th grader!!

Wendy

Tuesday, June 9, 2009 1:31 PM CDT

Tuesday, June 2, 2009 6:55 AM CDT

Brandon has had two checkups since my last post. Here were his counts:

Last Friday: WBC 1.8 HGB 11.9 PLT 29
Yesterday: WBC 1.7 HGB 11.6 PLT 10

We have started having the labwork done here in Mocksville and then driving to Brenners if he needs transfusions or needs to be seen. Hopefully this will help cut down on time we spend on the road and away from home! Yesterday we did have to go to Brenners to get a platelet transfusion. He goes back on Thursday to check counts again and also for a checkup with his cardiologist.

He's been feeling good. He looks a little pale with some circles under his eyes, but his hemoglobin is fine which usually causes the pale, washed out look. Maybe its just the effects of the treatment.

We've been busy. He went to field day at school on Friday. We picked three events for him to compete in that we thought would be "safe" - no chance for injury or bruising. His events were softball throw, water balloon toss and egg toss. Who would have thought egg toss would be the one that landed Brandon with his biggest bruise yet? Egg toss may need to be listed with contact sports like football.... Here's what happened. Brandon and his teammate were tossing the egg back and forth. After each successful toss, the kids had to spread further apart widening the distance between them for the next toss. Brandon went to catch the egg and tripped over the water buckets behind him. As he was going down, Beth Carter (one of the teachers) was behind him and she tried to catch him but he landed on the bucket and on the ground. All we could see was his arm raise and he gave the thumbs up - he managed to catch the egg! So the egg was safe, his leg however is black and blue. And according to Brandon, the best part was that he and his teammate won the event!

We went swimming on Saturday and to a cookout. On Sunday, Brandon went with Michael and the group from church to eat lunch in Winston and to play putt-putt. He had a wonderful weekend! We also managed to go to the movies to see Night at the Museum. He ate too much popcorn again.

I can't believe it is June already! We go back to Philadelphia at the end of this month. I have the dates, times, etc. but I guess I am ignoring the details right now and just enjoying our time at home!

Wendy

Tuesday, May 26, 2009 12:00 AM CDT

I know, finally, I am posting! Sorry.

So, we made it home from Philly not this past Friday but the Friday before. We spent time at home on Saturday and Sunday. Michael played softball on Saturday. Brandon woke up Saturday with a nasty bruise on his ankle and some spotted bruising on his chest, so I took him to the urgent care in Mocksville just to have his counts checked. I wasn't sure if the platelets had already dropped from the MIBG treatment. They were basically the same so he didn't need anything - just an overly cautious mom thing.

On Monday we went to clinic early to check counts since we were heading to the beach for the week. His counts looked fine, but just to make sure he had fun at the beach they went ahead and gave him a platelet transfusion. I spoke with Philadelphia and his urine tests taken while he was there for treatment were normal and the quick MIBG scan showed that it went to the same places, no new places. This telling us that the disease is still stable. So, we were very pleased and relieved.

We left around 3 pm for Oak Island. Ashley and I drove down with Brandon. The weather was yucky on Monday - windy and cold, highs in the 50's. The weather slowly improved over the week. On our last day there, it was 80 degrees and sunny. Robyn brought Ian and Rylan down on Tuesday. They don't remember their last trip to the beach, so we had a great time experiencing everything with them. We played in the sand and the ocean (when the weather allowed), we rode the ferry from Southport to Ft. Fisher to go to the aquarium, and of course we went fishing. We found a park on the waterway with benches and picnic tables, even a small pier. Brandon caught some croakers and even a crab! We decided this trip was our Wildlife Adventure - we saw 2 foxes, a bobcat of some sort, an alligator, oysters and crabs. We certainly enjoyed ourselves!

We came home on Friday and spent time with Michael and Jake. They missed us while we were gone! I think we were gone too long, since we had been in Philaelphia and then turned around and left for the week to go to the beach. On Saturday, we worked in the yard and played games. Sunday we went to a Memorial Day Service at a local church. My brother and his wife led the service. It was very touching. I am glad we were able to attend. On Memorial Day, we didn't do much of anything. We managed to squeeze in a cookout between rain showers. We watched a few movies. Brandon started complaining with a sore throat and headache, so that put a damper on things. He also had some small bruises and bleeding, so I anticipaed low platelets.

Today we are at Brenners and as I expected, he needed platelets. He's asleep in the hospital bed, Papaw is asleep on the couch. Brandon's counts today were WBC 1.8, HGB 8.8 and PLT 12. So he is getting "tanked up" today with blood and platelets. We will recheck again on Friday. Dr. McLean thinks the sore throat is just a cold, a virus he picked up. He does feel a little better today than yesterday, so I hope he can shake whatever it is quickly. He's got two new movies he wants to go see - Night at the Museum 2 and Disney's UP. We like getting back to the fun stuff!

Wendy

Thursday, May 14, 2009 1:24 PM CDT

Brandon is currently in the MIBG room as we call it - the one with the lead shields and wrapped in plastic. His injection started running around 1:00 pm. He should be finished by 3:00 pm. So far he is taking it like a champ. He's even requested McDonalds to eat. This treatment is a little different than the ones in the past. Since it is low dose, he does not have to be hooked up to IV fluids as long as he drinks 2 oz ever hour and goes to the bathroom every 2 hours. He can get out of bed and use the bathroom instead of needing a catheter or using a urinal. Oh the small joys we can find! Overnight he will get meds every 4 hours - one to protect his Thyroid. He is scheduled for a quick MIBG scan in the morning at 10:00 just to make sure the medicine was taken up. We should be out of here around lunch tomorrow.

Our trip up was uneventful except for the 45 minutes when Ashley and I thought we were being stalked, chased whatever you want to call it. So I was getting frustrated with the slow traffic and I passed a group of cars who were in the fast lane by using the slow lane to get around them. This taking place on 3 to 4 lanes of I-95. Someone in a Toyota from Florida evidently didn't like my driving, so when they had the chance to pass me, they came by and waved so graciously at me. I couldn't let my road rage go at that point, so I went around them again. That's when the adventure began. As I said, for about 30 - 45 minutes, they stayed behind me and followed every move I made. As I weaved in and out between lanes and cars, they did the exact same thing. Ashley and I discussed our game plans in case of further action by the other driver. I finally positioned myself in the slow lane hidden by tractor trailers trying to appear that I was getting off the interstate. I wondered if they would try to come with me. Well, the whole episode was mine and Ashley's imagination. They drove on by and we never saw them again. So much for being chased. It was fun and a little scary while it lasted and while our imaginations ran wild!

Wendy

Tuesday, May 12, 2009 6:23 PM CDT

Looks like Brandon's making platelets!! We went to Brenners today and his counts were: wbc 2.9 hgb 10.9 and plt 21. He has gone ten days without a transfusion and his platelets have gone up from 17 to 21 in the past 5 days.

The medicine that we were trying to get on the study for with platelets of 25 is not open. There is still a delay. Like I told them in Philly, Brandon's doing his part by making platelets, now its time for them to do their part. But it isn't their fault. The Children's Oncology Group (COG) is the hold up.

So the plan is this. At this point, we can't wait any longer to do something. He needs something to keep the disease quiet and stable. We can't wait on the antibody medicine since we don't know when it will open. We will leave in the morning for Philadelphia. Brandon and I will be taking Ashley along for this trip. We will stay overnight at the Ronald McDonald House tomorrow night. On Thursday, he will be admitted at CHOP for a one night stay. The low dose MIBG treatment will take place around 11 on Thursday. He will be in the plastic room again, but only for one night. The plan is to be discharged around 11 on Friday and head home.

I am not sure how to feel about all of this. Sad, mad, glad....just a whole ball of emotions. As I said before, we just have to trust in the Lord and go the way he leads us. Maybe this medicine isn't open right now for a reason. I don't want to sound ungrateful. I am happy that we have options and I pray that they work. So, please keep Brandon in your prayers as he is admitted for treatment this week.

Wendy

Friday, May 8, 2009 5:20 PM CDT

At Wednesdays doctor's visit, Brandon's counts weren't as high as I had wanted, but I knew they were still a blessing. Tried to think positive, they could have been worse. WBC 2.5 HGB 10.9 PLT 17 - So we held off on any transfusions. Today we went back for a recheck. They drew his blood and an hour later I walked back to ask Shea or Nancy what his counts were. Nancy teased me a little. I wasn't sure if it was good or bad....Platelets were up to 19! For the first time since stem cells, it appears his platelets went up on their own. And we are only 6 away from the magic 25 to possibly try a different medicine. Oh and the white count went up to 3.0 and hemoglobin went up to 11.7!! Can you feel me smiling in this journal entry?

We were instructed by Philadelphia to wait and check them again on Tuesday of next week. We will leave on Wednesday and head up to CHOP for one of two options. Either the medicine we are trying to get 25 on or he will be admitted for a one night stay to get a low dose MIBG treatment. I am not sure what the plan is yet, I guess Tuesday holds that news. We'll let Tuesday's business wait till Tuesday! I just know that God is looking out for our little guy, whatever path He leads us down, we will go. And as usual Brandon waits till the last minute and keeps us on edge with things!

Have a great weekend and a great Mothers Day!!

Wendy

Tuesday, May 5, 2009 9:14 AM CDT

On Friday, we returned to clinic to check the counts, especially the platelets. WBC 2.5 HGB 12.6 PLT 13 - So it was 8 days without a transfusion, but still not at 25 for the medicine. So we talked to his doctor in Philly and she said go ahead and give him the platelet transfusion so he could enjoy his birthday party on Sunday. Brenner's didn't have access to the medicine anyway and the opening of it at CHOP should have been Thursday, but it was delayed. Summary - Brandon didn't make the requirements for the medicine and the medicine wasn't available anyway. The plan is to give his platelets a little more time to recover. His is penciled in at CHOP on May 14th for a low dose MIBG treatment. From what I understand it should be a short stay, three to four days with travel. But for now, we give him more time with the platelets. We go back to Brenner's tomorrow for a re-check of counts. It will be five days since his last transfusion, I am hoping and praying that the platelets are 25 or higher. Please pray with me!

Brandon's "real" birthday party with his friends and cousins was on Sunday. We were worried about the weather as they were calling for rain and thunderstorms. We woke up to very cloudy, dark skies and some rain. The rain didn't last long, but it stayed kind of dark. On our way to church, Michael and I talked about what we would do about the weather and the party. We live next door to my mom and dad. Mom has a carport, so we were smart enough to put the tables and chairs under there on Saturday night just to be safe. Michael and I pretty much ruled out using the waterslide based on the weather on the way to church. But God smiled on us Sunday, because when we got home, the weather improved. The sun came out and it was very warm. Brandon was able to do all the things he had planned. We still ate and opened gifts under the carport, which was nice as it provided a shaded cool spot for those things. Brandon gave golfcart rides to his friends and cousins. We played a couple of party games. One involved grenade waterballons and the other was "Rescue Mission." His party was camoflauge/military themed. The rescue mission game was cool. We split them up into two teams. They were given a blanket that was folded to look like a stretcher and they were given a roll of toliet paper. The smallest person on their team was the "injured soldier" and was waiting on the other end of the yard. On "go" each team would run down to "rescue" their teammate. They had to wrap the kid in the toliet paper until they used the whole roll. The kid would get on the stretcher and the first team to carry their teammate back to the starting line first won. It was a blast, we played a couple of times! Brandon was able to get his waterslide out and the kids played on it for a while. Overall, he had an awesome 10th birthday party!!

Wendy

Thursday, April 30, 2009 8:27 AM CDT

Happy Birtday, Brandon!!!

Ten years old!!!

_______________________________________________________

We went to clinic on Monday and his counts looked pretty good. WBC 4.2 HGB 12.6 PLT 22 - no transfusions. We received great news that the urine tests in Philly were normal. This confirms that the disease is stable and not spreading.

Yesterday we went back to clinic to check his counts. As I mentioned before, we need him to maintain 25 on his platelets for 7 days without a transfusion. We have tried to be careful and keep him from bruising or bleeding to save the platelets, but he fell out of a chair and got a nasty bruise on his leg on Tuesday night. So his counts yesterday were: wbc 3.6 hgb 12.8 plt 15. We held off on a transfusion, which makes me nervous, in an effort to signal his body to make more platelets!! We go back on Friday to check again. At that point, I guess we will know what our next step will be. Either the platelets will be up and we go with one option or they will be down and we go with another option for treatment.

He is feeling great! Honestly, he's playing and laughing and acting so much like our Brandon. Either he feels better physically or he is relieved emotionally about the result of the last treatment or maybe a combination of both, but he feels great. He's eating like normal and we are enjoying these wonderful times. Our house is filled with silly, happy, giggly people again. Brandon feeling good makes the rest of us feel great.

Keep him in your prayers as we face decision time again with treatment options. And join in celebrating his 10th birthday!! We spent last night looking at his baby book and talking about how things were 10 years ago when he was born. He was very interested and it made us all happy to remember and talk about those things.

Wendy

Saturday, April 25, 2009 7:20 AM CDT

We are home. Sorry I didn't post much in Philly. We really didn't have as much time at the RMH as usual. We stayed busy.

On Wednesday, we checked Brandon's counts. WBC 2.2 HGB 8.6 PLT 17. Not sure why HGB dropped, its been three weeks since his last blood transfusion. So they decided to order blood and platelets for Thursday morning. Six days without a platelet transfusion - getting better! We went over to Nuclear Med for his MIBG injection. Usually he gets a little nauseous while they are injecting the MIBG, but this time he really got sick. It stayed with him until he vomited. He felt better after that, so we left the hospital and headed to the Vet School for his tour. (I'll tell you about that later. Let me stick to the medical stuff.) On Thursday, we arrived at the hospital at 8:00 for the tranfusions. He received blood and platelets - and they did a CBC before the transfusions just to see what the counts were again. WBC 2.0, HGB 8.7 PLT 16. All of this took place in about 3 1/2 hours, yes, cbc and transfusions all. We were able to swing by to get lunch at the McDonalds in the hospital before his scan at 1:00. We went to clinic to meet with the doctor at 3:00. The scan looked essentially the same as the one prior to the last treatment. Some spots were lighter. There are no new spots. Summary - the scan is stable. It appears that the treatment managed to put the brakes on the disease once again. The urine test will be back Monday. Hopefully the results will be normal and this will help confirm the results of the scan. Dr. Mosse was amazed with Brandon and how great he looks. She said that as long as he continues to look and feel as good as he does, we have to keep finding options for him. So we were happy to be able to talk about options. It has been so troubling not to know if this treatment would do anything, not to know if the stem cells would work.... so overall it was a good report. She sent us home to give Brandon 10 more days to see if he can get his platelets up for one of the options she has. We have lots to think about over the next few weeks. But we have to wait and see what those platelets will do. That may decide for us. If Brandon's platelets can maintain for 7 days at 25 without a transfusion, he would be eligible for one of the options. So, Michael and I of course have put this in the Lord's hands. He has carried us this far and we trust that He will continue to lead us through this. I want the platelets to get to 25 so we can try this option, but I trust that if it is the right path, God will help those platelets along. If not, He will send us in another direction. We go to Brenners on Monday to check his counts.

I am tired this morning, but I wanted to get the news out since I know so many of you check on Brandon. I will post again to talk about the fun stuff from our trip and to talk about Brandon's upcoming BIRTHDAY!! He will be turning 10 on April 30th!

Love,
Wendy

Wednesday, April 22, 2009 9:56 AM CDT

I am writing from the RMH in Philadelphia. We drove up yesterday. We had a nice ride up, no delays. It was such a nice trip that we went to eat at the Hard Rock Cafe last night. That was Brandon's only request, "Mom, can we please eat at the Hard Rock?" And boy am I glad we did, he ate 3 hamburger patties! (like steak with A-1, no bun.) By the time we got back to RMH, it was bedtime. We had some thunder and lightning last night, but we all slept well.

We are waiting to go over to the hospital for Brandon's appointments. He is playing the X-Box 360 in the living room here at the house. His first appt is at 12:30. Around 3 pm today we are going over to the Univ. of Penn. Vet School to take a tour. His buddies, Christina and her beagle, Gus, will be showing Brandon around. He is excited! Tomorrow his appointments were changed from morning to afternoon due to scheduling conflicts. We aren't sure yet what we will do about traveling home. I guess just wait and see how it goes.

Let me recap his counts real quick:

Last Friday at Brenners - WBC 2.6 HGB 9.0 PLT 12 - yeah, 12? so he got platelets on Friday.

This past Monday at Brenners - WBC 2.4 HGB 9.2 PLT 27 - much better.

We will check again today while at the hospital.

This past weekend at home, we did a lot of yard work on Saturday. Brandon played with Ashley. Michael threw steaks on the grill for dinner. It was so nice! We even played a little Rock Band.

On Sunday, we enjoyed going to Church together. Brandon took a friend with him. Then we had plans to go fishing with my mom's brother, Gary. He lives in Rowan County on High Rock Lake. Brandon took his friend, Tyler, with us and we spent the afternoon fishing in a private pond at Gary's. The fishing was amazing! The kids would drop in their lines and pull out a fish! Brim, bass and even one crappie! The smile on Brandon's face was priceless! We ate dinner with Gary and his wife, Darlene. It was a very special trip for us. Brandon can't wait to go back. Gary said next time we would take a boat out on the lake. Brandon can't wait!

On Monday after our visit to Brenner's, Brandon made a stop by school to see his friends. It seems like forever since he's been to school! (Mrs. Hendrix - he brought the bread on the roadtrip and had "communion" in the car on the way up! Tell your husband many, many thanks!) Brandon also spent most of the afternoon on Monday with his cousins, Ian and Rylan. We just stopped by their house for a quick visit, but Brandon ended up staying and playing while I picked up the rental car. The boys were so happy "Cousin Brandon" came to play.

Oh, and Brandon named the new baby girl donkey Macy.

Thank you for your prayers. Please keep them going!

Wendy

Thursday, April 16, 2009 11:30 AM CDT

Have you waited long enough for a new post?? I am so sorry. We've been busy with fun stuff!

Let me talk about the medical stuff first. Brandon's counts are looking good, platelets still haven't recovered completely, but they are lasting longer after a transfusion, which I take as a good sign. He was needing them almost every three days, but we went five days this time. His hemoglobin is holding on its own, its been two weeks today since his last blood transfusion. The white count was boosted from the neulasta shot, but it is starting to decline as the neulasta wears off. Here are his counts as I can best remember them (and I post these for my benefit too, so I can look back.)

Thursday 4/9 = WBC 7.3 HGB 12.0 PLT ?? 20's-30's
Monday 4/13 = WBC 6.7 HGB 10.9 PLT 20
Tuesday 4/14 = WBC 3.2 HGB 10.8 PLT 16 (got platelets)

We go back Friday to re-check counts to see if he needs anything and also to try to find a trend in the numbers. I am assuming we will return Monday to check again since we will be traveling to Philadelphia on Tuesday. We have to be safe for the trip.

He is feeling great and looking better. The eating is improving. His weight dropped down to 57 1/4, but he managed to gain a half a pound this past week up to 57 3/4.

We've been to the movies twice since being discharged from the hospital. We saw Monsters vs. Aliens in Salisbury and we watched Race to Witch Mtn. at the Grand in Winston. Boy was it a treat to get out and do something! On Good Friday, Michael, Ashley and I participated in the Good Friday Crosswalk through town. It was wonderful. I am so glad we went. It really set the Easter Weekend off right. On Saturday we went to a flea market with my brother and his wife. Brandon hasn't been to the flea market since he was a toddler. We had a good time. Saturday afternoon we spent it with my Mom's family celebrating my grandparents' 60th wedding anniversary. We were at Dan Nicholas Park for a cookout. It was great to be with family and Brandon played with his cousins. We even had a mini-Easter egg hunt since Brandon missed the one at our Church. Saturday night we dyed Easter eggs. We went to Church together on Easter Sunday. We ate lunch at my parents. We hid eggs with Brandon and in true Brandon nature he took some of the eggs and lined them up on fence posts and used them for targets with his guns. It was neat to see the holes in the eggs! We played with the golf cart too. He's been having friends over to play and he's been playing with the new puppy.

Surprise! We welcomed a new donkey to the family yesterday! Yes, Stacie finally had her baby!

Wendy

Monday, April 6, 2009 12:20 AM CDT

We are going home today!!

Brandon's white count is up to 1.7, hemoglobin is up to 10.9 and platelets are 18. He is getting a platelet transfusion before we leave. I've already packed up. We are waiting on the platelets.

Wendy

Saturday, April 4, 2009 10:07 PM CDT

I have good news to report. Brandon has been fever free now for 48 hours! His blood cultures continue to be negative. The white count is teasing us - it was 0.5 today. So is it really on the way up? I like to think so. His hemoglobin held at the same number as yesterday which also makes me feel encouraged. Brandon hasn't needed morphine for over 36 hours. And mostly, Brandon has been up and playing! He is feeling better which makes it so much easier to make these long days in the hospital. He is eating a little more - by that I mean 1/2 of a York Peppermint Patty, 1/2 of a Kit Kat, some french fries and watermelon. He's also been drinking milk and orange juice.

Tonight we had a special treat. Or, should I say we turned a potential negative situation into a positive one. Brandon's needle and dressing for his IV had to be changed today since it has been in so long. Negative because needles aren't any fun! When his nurse took the old one out, she said she would give him a little break and leave him unhooked until he needed his next course of antibiotics. So he was "free" from 8:00 till 10:30 tonight. He ran over and jumped on the air mattress, sat in the floor and hugged us so big! We painted some art projects together and then we snuggled on the air mattress while watching the Carolina game. I put a mask on him and we walked out to the vending machines on the floor. The snuggling was the best!

While Brandon was sleeping today, I was thinking about that phrase "Home is where the heart is." It is oh so true. Not that I want to make this hospital room my home, but with Michael and Brandon here, we've made it our home for this week. We've decorated the room. We've been sent snacks and food and surprises from family and friends to make it more like home. (Thank you for the balloons, magazines, cookies, lasagna, pretzels and Cheerwine! You know who you are!)

The doctors said not to even think about going home this weekend even though Brandon's fever appears to be gone and he seems to be feeling better. They are still worried about the place on his bottom. The team will discuss it on Monday and we will take it from there. The doctor today said she was surprised at how quickly things have changed for the better. She didn't expect it to happen over the past two days. She told Brandon to keep it up!

I also have noticed that there doesn't seem to be as much hair on his pillow. So I hope he has lost all he will lose.

Your prayers mean so much to us. So thank you from the bottom of our hearts. We love you all.

Wendy

Friday, April 3, 2009 3:49 PM CDT

Yesterday was a hard day. Brandon didn't feel well and slept most of the day. When he was awake he was in a bad mood. They decided to change his antibiotics late on Wednesday. He had a reaction to one of them so he has to be pre-meded with Benadryl before each 8 hour dose. So yesterday he needed platelets and blood too. With all the benadryl going, he was sleeping alot. I couldn't tell if he felt really bad or if he had so many drugs that made him sleep. He continued to spike fevers yesterday until around 8pm. And as of right now - he hasn't had another one....I am praying this is here to stay! No more fevers!

Today he got another platelet transfusion after he was drinking milk and he started bleeding inside his mouth. But, today, he has been awake most of the day and trying to play a little. He's even laughed several times today.

His bottom is about the same. He is taking morphine as needed for the pain there and in his mouth.

He did drink two small cartons of milk today and ate 2 chicken nuggets. Last night he ate a few grapes and drank a bottled water. Nana and Papaw are bringing french fries and sweet tea over for dinner tonight.

We have noticed hair on his pillow and in his bed. It looks like he is losing some of it. I talked to Dr. Mosse and she said that they have seen patients lose hair if there was takeup of the MIBG in the skull. She said the scan done right after the treatment showed uptake in the skull. So, I don't know how much hair loss to expect, Brandon said he's not real happy about it. I hope its just a small amount and you can't even notice. We just have to wait and see.

We will be here all weekend. They said they wouldn't even consider letting him go home until he has gone 48 hours without fever and they really want to watch the place on his bottom. When the white blood cells come back, they are afraid it may turn into an abcess. We will just have to wait and see.

Waiting and seeing, that's the pattern here! Lots of patience required!

Brandon's friends from school and the staff sent a basket of goodies and some books to read. They made the cutest banner that stretches across one wall in this room. It reads "We miss your smiling face!" and so many people signed it with messages to Brandon. We've enjoyed reading them today. He even got his report card - all A's!

His counts from today were WBC 0.3 HGB 10.1 PLT 36. Brandon is getting another Neulasta shot today to help boost the wbc's when they start to come in.

Wendy

Friday, April 3, 2009 3:49 PM CDT

Wednesday, April 1, 2009 1:07 PM CDT

Brandon is still inpatient. He is continuing to have fevers and pain in his mouth and on his bottom. So, let's talk about fever first. Yesterday he took tylenol about 4 times but it was with more time in between. Instead of spiking a fever 4 hours after the tylenol wore off, he would go a couple of hours more before the temp would rise. He spiked again around lunch today and they drew another set of cultures. So far the previous cultures are negative for infection. The new development was that last night his bottom started to itch and he asked me to really take a good look at it. There was the source of the pain. A sore has definitely appeared. Not quite sure what it is or what it is from. They will be talking to the infectious disease doctors to see what to do about it. They think that a swab and culture of the spot wouldn't help since they would pick up lots of bacteria due to the area. They are concerned since the fever has been hanging around for more than 48 hours. Do you change the antibiotic? Do you consider adding antifungal medicine? I will know more later today or tomorrow. Brandon is still taking morphine as needed for the pain. He is still taking several warm baths a day to get some relief.

Right now he is sitting up watching Spongebob and drawing pictures. It is so much easier to handle the hospital stay when he feels better. Last night was tough since he was in pain and just wiped out.

He's not eating much at all. I guess all he had to eat yesterday was a few french fries, half a popsicle and 2 chicken nuggets. But I won't complain, at least it is something, right?

We did hear from Philadelphia yesterday about his urine test from last week. The test showed improvement. One of the numbers is normal, it went from 11 to 9 and the other is almost normal, it went from 27 to 18. This hopefully shows us that the MIBG treatment did put the brakes on the disease and stopped it from spreading anymore. It does not show us what type of response he is having. We go back to CHOP around April 23 or 24 for an MIBG scan to see that.

Wendy

Monday, March 30, 2009 7:05 PM CDT

I would like to say thanks to everyone who is posting, checking, calling, asking, and praying for Brandon. It is very humbling to know that so many people care about our little man.

So, as expected, they drew a second set of blood cultures around 3:00 am since he spiked about a 102 fever again. After 24 hours the first culture is negative. We just continue to wait now. There was a change in the pattern with the fever today. On Saturday night and throughout yesterday, the Tylenol was able to bring the temp down to the 99's and 100's, but then the fever would hit the 102's again. Now today, he woke me up at 8 and said "Mom, I'm in a pool here!" He was drenched in sweat. So the fever broke all the way to normal - 98.6 - with tylenol still. This happened one more time during the day. I am trying to find some encouragement in this change with the fever. At least the tylenol has able to break the fever completely today.

His counts today were WBC 0.2 HGB 9.4 PLT 7. So he got a platelet transfusion today.

I didn't really post about it yesterday because it is embarassing to Brandon to talk about certain places on the body, but it became more of an issue today. He had some pain on his bottom yesterday. The pain isn't getting better. We've tried warm baths but finally he needed pain med for it. The morphine did the trick and he's been getting some relief. The pain could be mucositis that we've dealt with before. This comes from the low or non-existant white blood cell count. Mucositis can affect any part of the digestive tract from the mouth to the bottom. Brandon has had the mouth sores before, but never any issues on the other end. The worrisome part of this is that they can't give anything to heal it. Only the white blood cells engrafting from the stem cells will heal mucositis. So, we have to wait and see. The infectious disease team said they wouldn't change the antibiotics or add anything new right now. Just watch the temp and the bottom to see if it worsens or changes.

I don't know how long Brandon will be in the hospital. I just want him to get better and I want to take him home.

Wendy

Sunday, March 29, 2009 9:23 PM CDT

Its hard to believe it is Sunday evening. We are in Brenners. Brandon spiked a fever on Saturday. We were here at the hospital getting blood Saturday and his temp went up to 100.4. It came down to 99.5 so they let us leave after his transfusion. But later that night he started have chills and the temp was up again. We checked in around 11:00 at the hospital. His fever is hanging in the 102's. They give him tylenol and it goes down to the 99's and low 100's. He doesn't feel good from the fevers. I am hoping and praying they soon stop. With a white count of basically nothing, he has no white cells to fight infection with which is very scary. They started him on two antibiotics last night and they have been going throughout the day. Blood cultures were drawn last night and if he spikes again after midnight tonight they will re-draw them and have a second set out there testing.

Counts on Saturday were WBC 0.2 HGB 7.7 PLT 31. I expect he will need platelets tomorrow.

Wendy

Friday, March 27, 2009 5:36 PM CDT

We are back home and enjoying the rain. Actually, Brandon and I love the rain. It was nice driving home in the rain too.

We made it up on Tuesday just fine. Brandon made up some games to play. We had fun making a list of all the states license plates we saw. We even saw some from Oklahoma and Indiana. It was interesting. Mom was scared because I knew most out of state tags would be on the tractor trailers, so I would drive across the many lanes of traffic on I-95 to get close enough for Brandon to yell out the state. In the process we saw 2 Wal-Mart trucks which made us think of our Wal-Mart Heart drivers and the fun day that they treated Brandon to back in the fall.

Sorry I didn't post while in Philadelphia, I left the laptop at home and thought I would get to a computer in the teen room. I was wrong, we never quite made it to the teen room. Brandon's counts were low so we tried to stay to ourselves. I did allow him to visit the dogs from Vet Pets that come on Wednesday nights to the RMH. It is his most favorite thing and we are rarely there on a Wednesday night. He was hoping to see his buddy, Gus the beagle, but he met a new doggie and had a blast.

We were at the hospital on Wednesday morning for stem cells. He is such an amazing kid! When the doctor pushes the syringes in, kids usually get sick and vomit. Well, Brandon's tummy hurt a little, but he held it in and the doctor was able to put both syringes in without any delay. Brandon rested a little afterwards and then we were free to leave the hospital. We met with Dr. Mosse. We didn't talk about a whole lot. We all know. We are praying for our miracle!

His counts had dropped by Thursday to WBC 0.2 HGB 8.8 PLT 8, so we stayed that morning and Brandon got a platelet transfusion in Philadelphia before we hit the road. We were home by 8:00 last night. We had to make a stop at C's BBQ to get french fries and sweet tea to take home.

Today we have been resting. Brandon is very tired and without an appetite. We are going to Brenner's tomorrow to check his counts since he is so tired. He may need a blood transfusion.

He asked if he could go to the Hard Rock Cafe while we were in Philly so I debated since it was in public, but it is hard to tell him no with everything he is going through. So, we went and sat in a good area that wasn't crowded. He ate a hamburger and we laughed and talked. We had a great time. I am glad we went.

Thank you for checking in on us. I ask that you say an extra prayer for Brandon. We've been having lots of talks lately. He's asking a lot of tough questions which tells me he's got alot on his little mind. I don't know how he does it. I just know that I love him beyond words and I want to take all of this away for him so he can go back to playing baseball, going to school and being with his friends.

Wendy

Monday, March 23, 2009 10:09 AM CDT

Writing from Brenner's again...

WBC 0.3 HGB 7 PLT 7 So, Brandon is getting another platelet transfusion today. He's already asleep from the benadryl. Tomorrow we leave for Philadelphia.

This weekend we had to stay away from germs since his white count is so low. On Saturday, he rode the golfcart a little, played a little baseball outside with Nana, watched basketball with Michael and we grilled hamburgers and hotdogs for dinner at Brandon's request. On Sunday, Brandon stayed with Nana and Papaw since he couldn't be around a lot of people and Michael and I went to church together. We stopped for lunch which is something that we haven't done in awhile. When we got home, we played videogames with Brandon. Later in the afternoon, Ashley and I packed a picnic lunch and took Brandon and the new pup to the park. We put out a blanket and ate sandwiches and snacks. The puppy played and then took a nap. Brandon made up a couple of games to play on the blanket. He found a stick and hit the acorns from the trees like baseball.

When we leave the hospital, we will be heading home to get things ready for our roadtrip. Nana is going with me and Brandon this time. Brandon will be happy since he can "boss" us around. Mom and Grandma - yep, he's going to be catered to and spoiled the next few days.

Wendy

Friday, March 20, 2009 12:17 AM CDT

I am writing this post from Brenner's. Brandon is getting blood and platelets today. He is also getting a Neulasta shot to try to help boost the white cells. We came on Tuesday and his counts were okay, so we didn't have to stay. I knew we would need products today! He started having small bruises showing up last night, so I knew his platelets were low.

Here are the counts from Tuesday: WBC 2.6 HGB 9.0 PLT 24
Here are the counts from Today: WBC 0.3 HGB 7.7 PLT 2

No, I did not leave a number off the end of the platelets. They are 2 today. 2! And he didn't have any bleeding, just the small bruises last night. That child has an amazing body.

We will come back on Monday to get blood products to keep him safe to travel on Tuesday. Our trip to Philadelphia this time will be short. He has an appointment at 10:00 on Wednesday to get his stem cells. We will stay overnight to make sure he doesn't react and head home Thursday. My Mom will be making this trip with me and Brandon.

Brandon has been feeling well. The shoulder pain is gone. He's been able to eat a little. Not getting sick after eating, but just eating small amounts. Things don't taste normal yet. Yesterday he started to feel tired, which is a result of the low blood counts.

On Tuesday he was on cloud nine because Ashley got a new beagle puppy. Brandon picked him out at a farm in Burlington. The new pup is named Joey. Brandon has been playing with him a lot this week. Our beagle, Jake, now has a cousin. That's what Brandon says about it.

Keep Brandon in your prayers as we begin the next few weeks of many transfusions and waiting for the stem cells to engraft. I hope that he doesn't develop a fever. Fevers mean being admitted to the hospital for blood cultures and antibiotics. There will be lots of trips to the hospital over the next few weeks. All a part of it. I pray he continues to feel well and that this MIBG treatment knocked the socks off the NB.

Wendy

Monday, March 16, 2009 7:43 PM CDT

We made it home safe and sound Sunday afternoon around 5:30. We were all tired, but very happy to be home.

Brandon's shoulder pain seems to be all gone! He still is battling a little nausea. It is slowly improving. I am telling him to concentrate on the fluids, not to get dehydrated. The eating will come back, it just takes some time. All those medicines pumped into his body, I can only imagine how it would feel.

We go to Brenner's tomorrow for a quick check of his counts. I bet we go back on Friday to check again to make it through the weekend.

Wendy

Saturday, March 14, 2009 2:40 PM CDT

Hey, everyone! I am writing this post from a hotel room in Philadelphia. Not a hospital!! Yesterday afternoon around 2:30 they re-checked Brandon and his number had dropped to 9.2, still not low enough to be discharged yesterday. So we had to stay again in the plastic room overnight last night waiting to see the radiation level drop again. They came and checked him this morning and it was down 2.7! That kid can pee. He was discharged around 11:00 am. The Ronald McDonald House will not allow patients to stay there after MIBG treatment so we had to get a hotel room at Brandon's favorite, Sheraton University City. Nana, Papaw and Ashley have an adjoining room. We went out for lunch down at Penn's Landing on the waterfront, stopped by the pet store to see the puppies and checked out IKEA for a specific chair Brandon wants for his newly decorated bedroom at home. We are now in the hotel, Brandon is so happy! We had bought him a few surprises (mostly toys but also new PJ's since his had to be thrown away.)

Breaking news - Carolina just lost to FSU. Michael just left the room and went straight to the bathroom!

Okay, back to the important stuff. Ashley snuck into our hotel room earlier and left his goodies on the bed. He was thrilled! He's putting a Bionicle together now. We can open the door between our room and Nana's room. Brandon loves it. He's running from room to room.

Yesterday Brandon started having pain in his left shoulder. We know it is the NB, but we aren't sure if it is from the treatment or what. We will have to wait and see. Of course, it was a very tough night, hard to face something new, but he slept well and hasn't complained with it today much. Dr. Mosse told us on Tuesday that she was very concerned about the left shoulder - it was the brightest spot on his scan and the right shoulder wasn't far behind. She was hoping that we could get the treatment in and stay ahead of the pain. I hope we are right on top of it. They gave us prescriptions for Tylenol with Codeine and Morphine just in case.

We will check out early in the morning and head back to NC. The plan is to go to Brenner's twice a week for counts and blood products as needed. We will return to Philadelphia the week of the 24th for stem cells and urine test. An MIBG scan has been scheduled here for six weeks from now. That's all we know medically.

I know that I can't express how happy I am to hold my little boy and hug and kiss him. To see him running around smiling and laughing is priceless. Those days and nights in that room get long! And I don't even have to stay in there all the time!

Okay, so, this weekend Philadelphia is celebrating St. Patrick's Day. We are in "University City" right next to Drexel University and U-Penn (University of Pennsylvania.) There are college students walking all over the place all dressed in green and enjoying the pubs/taverns by par-taking of the Irish drinking tradition. You should see some of the outfits. There's always something going on in the city!

Wendy

Friday, March 13, 2009 12:12 AM CDT

Things are moving quickly around here today - I haven't even had a shower yet. They came and checked his number this morning around 11:00 and it was 9.7. Oh, so close! They decided to come back this afternoon between 2:00 - 3:00 to recheck him. Remember to be discharged he needs to be 7 or below. The magic number to get the MIBG scan was 10, so they pulled strings and worked him in and he's already had the scan today. This means that we don't have to stay in Philadelphia through Monday. The original plan was to stay in Philadelphia through Monday to get the quick MIBG scan which you can't get over the weekend. So if he gets the low number today, we will be discharged, stay in Philly overnight and head home tomorrow. If not, he should be low enough to be discharged in the morning and we would head home tomorrow too.

They checked his counts today - WBC 1.9, HGB 9.4, PLT 24. Brandon is getting a platelet transfusion as I type this.

I have been sitting out in this hallway laughing so hard at the posts in Brandon's guestbook! YOU GUYS ARE ALL AWESOME! We LoVe YoU!

Michael is so happy today - he is able to watch the Carolina game in Brandon's room. He had a hard time finding the ACC Tournament games on TV here. Our social worker, Dana, graduated from UCONN and she is a huge UCONN fan. Michael and her have been discussing basketball since yesterday.

Okay, I look forward to your reading more of your posts. I am considering banning Ashley's posts. I can't believe how pitiful she is. She is so mistreated......

Wendy

Thursday, March 12, 2009 4:11 PM CDT

Yes, Kendra, here comes another post!! I am more afraid that one of those ladybugs from Sunday school will land in my hair and you will smack it out again!

We are loving the messages in Brandon's guestbook. They mean so much and it is something to look forward to when waiting out in this empty hallway all day when its not your turn to visit the "plastic room."

Oh, and I forgot how lovely we all look in yellow gowns and blue booties. Its quite the fashion statement here at CHOP on 3 South.

Today they checked Brandon's radiation level and it had dropped to 18.7!!! That boy is doing some peeing. (Don't let him know I wrote that, it might embarrass him.) Guess that's what's done the trick on dropping the number. He claims that he is going to break the record and get out of here tomorrow. I don't know how realistic that claim is, but we can always hope. He started having some jaw pain last night, which comes from the salivary glands taking up the MIBG. So far he hasn't needed pain meds. He was sick this morning once and vomited up his medicine, so he had the pleasure of re-taking SSKI drops which he says taste like blood.

Nana and Papaw spent their time in with him today and allowed Michael, Ashley and me to venture out of the hospital for a couple of hours. We didn't go too far, just a couple of blocks to the book store and to grab some food. It was nice to get out and walk around the town a little. We picked Brandon up some magazines to read and throw away.

He made a list today and gave it to me. It read "My Top 5 Jobs" 1 - Zookeeper, 2 - Baseball Player, 3 - Vet Boss, 4 - Hotel Owner, and 5 - Superhero. How sweet!

I didn't get a chance yesterday to tell you about the "Treat Box" I made for Brandon. Since everything he touches he has to throw away while in that room, I took the game Scattergories from home and photocopied the subject cards so he could hold them and play along with me in the room. I put the timer, pencils and notepads in plastic bag. Then I went to the Dollar Store and bought a Teenage Mutant Ninja Turtle basketball goal to put up on the door so he could play. I also bought a little plastic gun that shoots plastic balls. I packed snacks and a fun pad with crayons. When we cleaned his room up a few weeks ago, he found a Nursery Rhyme book from when he was little. In it are bear stories that we have started reading at night before bed. I picked out 4 stories and copied them in color so I could give him the copy and I could hold the book - we could read the stories together!!! Of course he brought movies and videogames, but I really enjoyed putting this little treat together for him.

Michael's been taking some of his time in the room to work on teaching him to whistle - he still can't get that one. And this reminds me of the funniest thing, my kid snaps his fingers with his ring finger, not his middle finger.

Here's another funny story - Michael and I wanted to walk out front of the hospital on Tuesday night. Mom and Ashley stayed with Brandon in his room (before injection.) We got off the elevator and headed over to the vending machines where Michael bought a Reese's Cup and Pepsi. In the corner sat a lady with her I-Pod, MP3 player thing in her ears. I wish you could have heard this yourselves. She had long blonde hair and had her head down, legs crossed and I am not kidding you at the top of her lungs was singing along with Sugarland's "There's Gotta Be More Than This." And she was like me, not much of a singer, so it was quite entertaining. I mean the kind of singing you do in your car or shower when no one can hear you. She was oblivious to everything going on around her. When that song ended, she moved on to another Sugarland song. The security guards even walked up and asked her if she was okay and told her she needed to tone it down. Michael said it was the coolest thing he's ever seen. He thought the security guys should have left her alone. You just had to be there to fully understand this story. But now that I think about it, I think she was there for a reason, the song's lyrics apply and Michael and I needed a laugh.

Wendy

Wednesday, March 11, 2009 5:01 PM CDT

Yesterday we came to clinic and met with Dr. Mosse to talk about things and so she could see Brandon. He gave another urine sample to check and see where those numbers are. We were surprised by his counts. I know the HGB was 10.0 and the PLATELETS were 41. If you are thinking what I am thinking, I just don't understand. I expected them to be around 20. We were very pleased with his counts. The hemoglobin needs to be 10 or above to have MIBG or he would have needed a blood transfusion before the treatment, so he barely made it, but he did make it! The talk with Dr. Mosse just reiterated what we already know. We are up against a wall (in her words.) Again, we just have to wait and see what this treatment does. She is very concerned that the platelets will not engraft when we return in two weeks to get the stem cell infusion. Brandon will have his urine checked about every two weeks to try to follow what is going on with his disease. His urine tests have been a good marker for his disease status.

We were able to leave the hospital after the visit with Dr. Mosse and spend some time outside this place. We went back to the Ronald McDonald House and Brandon played videogames then went to the teen room to shoot pool and listen to music. He played quite a bit with Ashley on the computer too. We all walked down the street to eat lunch. We arrived back at the hospital around 4:00 pm. Brandon was admitted and we all spent time with him since it was the night before injection, we could touch him, we could all be in the room with him. He ate McDonalds for dinner and we watched American Idol. Michael took Mom and Ashley back to the RMH around 10:00 pm. I climbed in the hospital bed with Brandon and we snuggled and talked a little. He ended up falling asleep in my arms.

This morning things started moving along to get ready for his injection around 1:30 pm. They hooked him up to the IV, started some anti-nausea medicine and gave him the meds to protect his thyroid. He had me call over to RMH and ask Nana to make him some homemade spaghetti to bring to him for breakfast! And the special request was "Don't forget the parmesan cheese!" The injection took place at 1:40 and he requested that I be in the room with him during the 2 hour process. In all the madness to get started, we forgot that he had his PJ's on from the night before, so he's wearing them and they will have to be thrown away when we leave. Michael, Nana, Papaw and Ashley stayed in the hallway outside our room. We have a window on the door, so they could peep in and wave. Brandon watched the Disney movie, The WIld, while the medicine was being injected. He complained once that he stomach was cramping, but about 15 minutes later, he asked for Papa John's breadsticks. Michael and Ashley ran out to get them for him. Everyone commented on how his room smelled so good - the nurses, radiation therapists.

After the injection they checked his radiation number and it was 49. Last October it was 45 and before that was 52. The number needs to come down to 7 in order to be discharged. He is required to pee every 2 hours as this is the way to eliminate the radiation from his body. It's going to be a long night! I will set my cell phone to alarm every two hours and I will wake him up to go. I can only imagine how much attitude I am going to get from that little guy when I disturb his sleep...but I will remind him that it is better than having a catheter!

I did remember a story from the road trip. Let me start with the roadtrip story. We stopped in Henderson, NC to grab Wendy's for Brandon's lunch. We all got out of the van and I reached over and locked the van with the button inside the door. ( I forgot that at home that morning, Michael couldn't get the keyless entry button to work on the key ring. ) We came out of Wendy's and Michael looks at me with a look that I won't describe... The key to the van's ignition was one of those square plastic things and of course it wouldn't fit in a key hole. At this point I had one of those aches in the bottom of your stomach. All I kept thinking was - I am never getting to Philly today. I've got to call the car rental place and have them come out here. Oh no! But I knew there was something on the key ring that had to work, so I kept messing with it and the real key slid out from behind the plastic block thing that almost caused me to have a heart attack. Can you tell I don't drive a brand new car? Whatever happened to regular keys?

I will update with the new radiation number after they check him in the morning. Also, they will re-check his counts on Friday to see if he needs any blood products.

Wendy

Monday, March 9, 2009 7:20 PM CDT

Okay, Kendra, this one's especially for you...

We are all settled in here in Philadelphia. Strangely enough, I do not have any funny stories to tell about the roadtrip. It was very uneventful, which is a good thing. We are waiting on a pizza delivery. Brandon requested Papa John's tonight and a movie. We are going to savor the night being out of the hospital. Tomorrow will begin the confinement!

Yesterday's Church service was amazing. We were so touched by the outpouring of love and support. The special prayer at the end of service was just what we needed. We love you all!

Also, thanks Dawn L. for the basket of goodies! Great snacks for the trip!

I will post tomorrow, if I can. We meet with Dr. Mosse at 8:30 and Brandon should be admitted to the hospital later in the afternoon. I hope we get some time between the visit and the admission to do something fun.

Love,
Wendy

Thursday, March 5, 2009 3:21 PM CST

The MIBG scan looks worse than the last one we had at CHOP in January. And the area of most concern is the bone marrow disease. It now explains the low counts. The liver looked fine which tells us the CEP was causing the liver irritation and the enzymes to be elevated.

We are leaving for Philadelphia on Monday. We are meeting with Dr. Mosse on Tuesday morning before she goes out of town. Brandon will be admitted that same day for another MIBG treatment - the one with the lead shields, not being able to be touched..... This will be his fourth one. We are in the same situation as October - we need this to knock the disease back, we need it to work. Dr. Mosse said she is worried as we are on limited options more and more. I will know more after talking to her on Tuesday. We will be gone for at least a week. Brandon will be inpatient from Tuesday until his radiation levels are low enough. I am thinking Sunday.

Please say an extra prayer for Brandon. That phone call from the doctor last night was hard to take.

Wendy

Wednesday, March 4, 2009 5:15 PM CST

We had a wonderful time in the snow! Almost 5 inches! It was the most snow Brandon has seen here at home ever! The only down side was that we lost power Sunday night around 10:30 pm and didn't get it back until after lunch on Monday. Being without electricity makes playing in the snow a little more challenging. We slept warm and cozy at home Sunday night. It was neat to have candlelight and snuggle together all three of us. On Monday morning, my dad built a fire in his woodstove at his car garage. We would go out in the snow and then warm up by the fire. Brandon even cooked us scrambled eggs! It was quite an adventure. We built snow forts and played capture the flag/snowball fight. Michael chained one of Brandon's sleds to the golfcart and we pulled Brandon and Ashley around and up and down our road. It was something to see!

So, here is the medical news. Brandon's liver enzymes came down to 68 and 114. So they are much better, still not normal (normal is 15 - 50.) I was happy about the drop. The counts are hanging around and not getting much better - WBC 1.9 HGB 9.4 PLT 20. Today he received a platelet transfusion after his MIBG scan. He starts baseball practice tomorrow night and it isn't very safe to be playing with platelets that low.

Hold on, Dr. Mosse from Philadelphia is on the phone about Brandon's scan. I will finish posting soon.

W

Saturday, February 28, 2009 7:39 PM CST

As you can see from the new picture, we've been spending time together trying to take our minds off of all the medical questions. We went golfing Friday, but the rain settled in about halfway through and we called it a day. We've been playing Rock Band at home and it is quite a sight. Brandon was our guitar player, but moved to lead singer and took over for Ashley. She plays bass and Michael plays lead guitar. I've been on the drums, cause I really can't do anything else. We created our band and Brandon named us the "Royal Irons." Hmm, I haven't figured that one out yet either. We went out to dinner last night but Brandon got a little sick. I think he ate too many boneless buffalo wings too fast. Not a good combination for a stomach on the mend. But, that's what he wanted, and that's what he had!

Dr. Mosse and I have been talking via email. She needs the MIBG scan to figure out what is going on. She wants to know what is causing the liver enzymes to be elevated. I know I didn't explain it all in the last post. I don't always like to talk about it in detail. I often hope you guys can piece it together without me having to say. I guess, the basics of it are this. The urine levels were elevated - when NB cells are splitting and spreading they release the hormones that are checked in the urine test. Normal tests - NB not doing anything. Elevated tests - could mean NB is active. Brandon's urine tests have always seemed to be reflective of what is going on with his NB. Counts (wbc, plt, hgb) dropping - could be virus, should have recovered by now, but could also be NB in the marrow taking off. Liver enzymes elevated - could be virus, should have recovered by now, could be CEP, been off for a week now, but could also be NB in the liver. Put all of this together and you see why we are all very concerned. As I said in the last post, we wait and we pray.

Dr. McLean called today from Brenners and told us to come on Tuesday at 1:30 for clinic visit to check counts and chemistries, followed by a 2:30 MIBG injection. The MIBG scan is scheduled for Wednesday. Dr. Mosse in Philadelphia has already penciled Brandon in the schedule for an MIBG TREATMENT on March 16th. It is reassuring to know she is taking steps to ensure Brandon gets what he needs. But, we don't know anything for sure, the scan on Wednesday will tell us what we need to know.

We are excited at our house for the potential snow tomorrow night. I hope we get the best snow we've had in years. Brandon would love to see it and play in it!

Wendy

Thursday, February 26, 2009 3:30 PM CST

Let me start with our weekend in the mountains. We had fun. It was great to be with everyone and get away. The cabin was perfect! Brandon had lots to do with his friends - we had ping pong tournament and a pool tournament. The hot tub was a hit, too. The kids loved it! When we arrived, we found no snow, but we did find a neighborhood beagle running around. He even snuck into our cabin a couple of times. Then on Sunday morning, we woke up to snow. The kids went out and tried to sled and snowboard before we had to leave.

Brandon has been off of the CEP-701 this week since his liver numbers were too high on Thursday. It made a world of difference in how he felt and ate. He has been eating like a little pig - even ate 13 chicken nuggets at one sitdown from Wendy's. He went to school a little this week which always does him good.

Today we were at Brenners for his checkup. His weight is up to 61 1/4! Wow - much better! The counts were not as good as last week - WBC 1.5 HGB 10.3 PLT 23. The chemistries showed that the liver numbers were even higher than last week, up to 111 and 220. So, he couldn't restart the CEP. Then came the results from the urine tests. They are not normal. They are slightly elevated. So, we are worried about so much right now. Philadelphia is unable to work him in next week for an MIBG scan, so they have asked that we do it at Brenners and send the scan to them to review. Brandon will go back to Brenner's on Monday to check his counts and on Tuesday he will get the MIBG injection, followed by the scan on Wednesday. Dr. Mosse is concerned about the liver numbers being up again. She needs to see the scan to determine what is going on and what to do about it.

So, we wait and we pray.

Wendy

Friday, February 20, 2009 5:54 AM CST

I am proving my love and dedication to you all now. I got up extra early this morning just to update so you didn't have to wait until next week. (extra early, yeah like 6:30 is extra early! Shame on me!) I had shut the computer down last night without posting, but couldn't get it off my mind that I needed to let you all know what had happened yesterday at clinic.

Brandon's counts looked a little better. WBC up from 2.1 to 2.6 HGB up from 10.4 to 11.1 and PLT up from 16 to 17! I had hoped for more platelets, but was feeling blessed that they hadn't dropped anymore. Honestly I had set myself up to expect about 10. The liver numbers did not come down anymore still 88 and 169. I talked with Brandon's team at CHOP for direction. Dr. Mosse decided yesterday to have a urine sample taken just to check. We won't have the results back until sometime next week. She also made the decision to go ahead and give Brandon a platelet transfusion yesterday since we are traveling. She didn't want him to have to worry and be over cautious - she wants him to have a good time. If we weren't going out of town, we could have waited. So we spent most of the day at Brenners. Brandon had a slight reaction to the Benadryl, but he was able to fall asleep while the platelets were being transfused. I also found out that the liver numbers had to be down to 125 in order for him to start the next course of CEP next Monday. That has been put on hold since they didn't drop far enough. We will go back to Brenner's on Thursday of next week to see what has happened with his counts and chemistries. Of course, we are hoping that the week off will allow the liver numbers to return to normal and the platelets to recover (which the medicine should not be causing the platelet drop, but maybe a week of rest will do his body good!) Once the liver numbers are back below 125, he can start back on the CEP-701.

Now, I am off to pack for the weekend getaway!

Wendy

Tuesday, February 17, 2009 12:55 AM CST

Just a quick update. We went to Brenner's today to check those counts and chemistries. Disappointing, troubling...

WBC 2.1 HGB 10.4 PLT 16

Okay so the platelets dropped again. We held off on a platelet transfusion until Thursday. We are hoping (and praying hard) that we will see them turn in and head up instead of down! If they remain at 16 or drop anymore, he will get a tranfusion. I talked with Philly and they are still holding out that the stomach virus has affected his counts but we don't know yet. The other possibility is the NB in the bone marrow. We just have to hope and pray and wait on the little guy who always surprises us!

On a positive note, his weight is up a little to 59 1/4 and the liver numbers are down, still not normal but much better at 80 & 167.

So, I see that there is a possibility of snow mixed tonight...and hey, its TUESDAY!! Could it be, the Tuesday thing is on again?

We are going to Boone this weekend. We are so excited!! Brandon has been looking forward to going to the mountains! A weekend getaway will be nice.

I'll post after Brandon's clinic visit on Thursday. Please say an extra prayer for our little guy!

Wendy

Friday, February 13, 2009 1:48 PM CST

We went back to Brenners today to check on Brandon's counts. His WBC were back to "his" normal range 3.2 HGB was 12.7 and platelets were 24. So the platelets are basically the same. I was happy that they had not dropped to 10 or 15. I am hoping that by next week they will start to go up again. His weight was basically the same at 58 1/4 lbs. I was happy to see the liver enzymes had started to come down from 200's and 400's to 170's and 290's. I am also hopeful that those will return to normal next week.

Tonight is the Valentine's Day Dance at school. He is looking forward to hanging out with his friends and of course, his Valentine.

Wendy

Wednesday, February 11, 2009 7:50 AM CST

So the Tuesday snow theory was proven wrong yesterday. Well, we tried.

Brandon did better over the weekend. I think the two days off of CEP helped ease his stomach troubles. He is finally over the stomach virus, but Michael has been the latest victim.

Michael and Brandon went to the Carolina Tarheels game with Keith and Brian on Saturday. He had a great time. They were gone for most of the day since we live almost 2 hours from Chapel Hill. I think it was great for him and Michael to have a guy's day and spend time together.

Yesterday was Brandon's checkup at Brenners. I don't know how many more "surprises" I can take, but here's what we found out. Brandon now weighs 58 3/4 pounds. The virus and CEP really did a number on his eating and boy does it show with his weight. He is starting to eat more, and he knows it has to be a priority over the next few weeks to get back up in the 60's. His white count (WBC) and hemoglobin (HGB) looked great - in fact they were in normal range: WBC 5.5 HGB 11.5. Then came the platelets - a whopping 26. Yes I said 26. Okay, could be the virus he was fighting knocked them back and they are so fragile. We plan to go back on Friday to have the counts checked again to make sure he is okay for the weekend. Remember, platelet transfusions are needed when platelets are between 15 & 20. We also found out the liver function numbers have really jumped. It is a possible side effect from the CEP, but we had not seen it yet. Brandon's numbers have been normal. So it was a shock to see them up from 50's to 285 and 427. Dr. McLean said it is possible this rise is from the virus too. We will have this repeated on Tuesday of next week. So lots of things up in the air and we have to work on the eating. Dr. McLean also prescribed another drug to try to help with the vomiting from the CEP, but we aren't completely sure we want to use it. It is also an anxiety drug and has been known to knock him out before. Of course, this is a low dose. I will be talking to his team in Philadelphia today to see what their take is on all of this.

The good news is that he is feeling better than last week and he is looking forward to the Valentine's Day Dance at school on Friday night and he is excited about our upcoming weekend in the mountains, next weekend.

Wendy

Wednesday, February 4, 2009 7:29 AM CST

We've been battling a stomach bug of some kind at the Koontz house. Its not any fun. And it makes it even harder for Brandon to keep his medicine down and maintain his weight. But hopefully we are on the mend.

We went to the PBR (Bull-Riding) on Friday night. Thanks to Brenners and a non-profit organization for donating the tickets. Brandon was invited to go backstage for a tour and to meet some of the riders. The 2004 champion, Mike Lee, took us on the tour. He even let the kids use paint and put their handprints on his chaps. This way they could recognize him when he was riding. This guy was awesome. He shared his belief in Jesus and asked if he could pray with us for the kids. We had a lot of fun.

Yes we did get snow and it is freezing cold! Brandon and I were talking about the snow last night - it has been two straight weeks that he has seen it snow on Tuesday night. Last week in Philly and this week here, maybe he is starting a trend or something....we'll see if we can get about 5 or 6 inches next Tuesday. Now that's what I'm talkin' about! Okay, so I am pushing my luck here..

Wendy

Wednesday, January 28, 2009 6:49 PM CST

I was so tempted to write a quick update last night around 10:30, but I held off, I didn't want to rub in it.... yes we had snow! About 2-3 inches and then early this morning it changed over to freezing rain and coated everything with ice. I must say the people in the city are prepared for bad weather, the roads were decent, we were able to make it to the hospital on time for Brandon's scan.

The MIBG scan is stable! The doctors were very pleased. We were relieved. Brandons platelet count has also started to move up - back up to 43 from 35 last week. So that is another thing I can stop worrying about! It was cute today at clinic. Dr. Maris saw us sitting in the lobby waiting for Dr. Mosse. He came over and talked to Brandon and he said, "I'll go ahead and tell you your scan looks fine. Now, don't go tell Dr. Mosse, she'll be mad at me for telling you first." He was so funny. Then we were taken back to an exam room and spent time with Diane. When Dr. Mosse came in, she started telling us about the scan being stable and how it was great news. Brandon raised his hand and told on Dr. Maris! He said, "What will happen to Dr. Maris for telling me already?" She joked with Brandon about it and they discussed what his punishment should be. Dr. Mosse is excited about her research and the ALK inhibitor being a drug Brandon can use in the future if he needs it. In fact, she said as she wrote the protocol, she had Brandon in mind. She didn't include a restriction on platelets to be eligible for the medicine. She also said they are very excited about another drug but it has requirements on the counts. She is hoping that the CEP will keep the disease stable and allow his counts to recover better which will make him eligible for more drugs in the future. She talked to Brandon about his weight. She told him she was proud of him. He was doing an awesome job fighting NB with his body and his weight was fine. She explained that they come up with treatments in the lab, but they aren't the ones who have to take it and they have no idea how it really feels to take those medicines. She told him he should be applauded for all he has done. We get two months before going back to Philadelphia for another MIBG scan and we only have to go to Brenner's every other week instead of every week. We were so happy today!! Thank you for your prayers!

We are in a hotel in Virginia tonight. I drove about 4 hours in this weather mess and we aren't even half-way home yet. We were all tired and decided to stay the night and let this all melt before continuing home. We stopped in Baltimore but couldn't find a place we felt comfortable at. Brandon has already gone swimming and enjoyed the hot tub here at the hotel. Now he is watching a movie and snacking on crackers and soda. He deserves it!

We will head home tomorrow. Brandon will start another week of CEP tomorrow.

And, the car did warn me about ice again today. I think it has a fixation with the frozen stuff.

Wendy

Monday, January 26, 2009 8:46 PM CST

We are settled in, we arrived around 5:30 this afternoon. Brandon is eating popcorn, watching a movie. We get to sleep-in in the morning. Brandon has to be at clinic at 12:30. Tonight he took his last dose of CEP for this week. He gets two days off, so maybe he will feel like eating a little more.

Okay so let me share the drama of the day. I already have a story to tell about this trip! So, Michael took us to the car rental place in Mocksville this morning to get our car. It should have been ready when they opened. The guy didn't have the code to cut off the alarm, so he set it off when he went in to open the office. While we tried to talk about my reservation, a police officer showed up and the alarm company called. I should have known this was a sign.... He checked for my reservation after addressing the alarm situation and guess what, no reservation. The guy I talked a few weeks ago to never booked it. So, I had to wait while he re-entered everything. Okay - no reservation means they didn't plan on having a car ready for me. But someone had returned one over the weekend and that's the one we got. The guy never had time to wash it since he didn't know we were coming. I had to leave because you must check in by a certain time at the Ronald McDonald House. There was lots of dirt on the windows - evidently the previous driver had been somewhere with wintry weather. I decided to run the car through a quick automatic car wash at the gas station. Now, here we are sitting in the carwash and I get a warning in the car that the trunk is ajar. This warning comes after the soap has been applied to the car and you can't see out the back window to know if the trunk is completely open or not. And then the 50,000 gallons of high pressured water begin to pound the car and I am scared that the trunk is completely open and all our belongings are drenched with water. And to top it all off, I didn't know how to stop the darn thing. I couldn't drive into the sprayer thing, so I waited for the perfect opportunity - the sprayer thing made its way around my side of the car and I just drove out. Lights flashing "BACK UP" and water and soap running off the car. We were lucky. The trunk was open, but not all the way. Mom's winter coat (black) was wet and soapy. Brandon's spiderman suitcase was wet. But thank goodness the laptop was behind all of these things and didn't get wet! Crazy, huh??

Oh and the car also informed me three different times today "Ice Possible." I was confused. Was the car trying to tell me the forecast? I never saw ice on any of the roads.

After all this I am almost afraid to look and see what this car tells me tomorrow!

Wendy

Sunday, January 25, 2009 8:19 PM CST

Just a real quick post before our trip. Tonight I am packing our things, at the last minute as usual. I get tired of packing and unpacking. But at least it is easy for me now, I am quite the experienced traveler. I have the most important things ready to go - the I-pod is charged, the Nintendo DS is charged, the dvd player and Brandon's movie choices are packed up, Hank the Cowdog book and booklight are ready, notepad and pen, little skateboards and action figures are in a ziploc baggie... Can you tell where my priorities are on our trips? Keeping Brandon happy and entertained! Brandon is watching wrestling with his dad, Ashley, Papaw and Uncle Keith.

Michael will drop us off at the car rental place in the morning and we will be headed north.

I'll try to update while we are there, but I can't make any promises. You never know what Nana, Brandon and I will get ourselves into! I can tell you there is a cheesesteak in my future. Oh, and I'll take some snow with that, but only after I actually get my family to Philadelphia. I'd rather not drive in it. Just play in it. I can always hope, right?

I know I don't even have to say it, but I ask all of you to say extra prayers for Brandon!

Wendy

Thursday, January 22, 2009 9:17 AM CST

We had snow this week! A minor snow event to be precise. I don't even think you can call it an event, but at least we had about an inch and it looked beautiful! Brandon and I made the most of it, he took his snowboard out and practiced by going down the ditch in our front yard. Hey, its practice! Then we took the golfcart out and we couldn't stop laughing! He was driving of course and we were sliding and spinning wheels. It was a blast. And it was a good thing we went out early, since the sun came out and starting melting it by lunch.

He went to clinic yesterday at Brenner's. I am happy to report the rib pain has not returned. His counts were good, didn't need any transfusions. WBC 4.0 HGB 11.2 PLT 35 We are concerned about the platelets dropping for the second week in a row, but the HGB and WBC going back up is a move in the right direction. Those platelets are fragile and the hardest part of his marrow to grow, so I am hoping that by next week they turn and start heading back up. Of course, if I avoided the issue of the NB in his bone marrow and the possibility of it spreading as being the reason for the drop in platelets, I would be an idiot. So, I am concerned about it, just hoping for the best. I try not to focus on it. He is feeling good and his weight was even up this week!! From 60 1/2 to 61 1/4. He was proud!! I know its not much, but it is something and it is better than last week.

We went to the movies on Monday with Ashley. We watched that new movie, Mall Cop. I was surprised at how many people where there, but it was a holiday. Brandon loves to eat the popcorn at the movies. I am lucky to get a handful of his popcorn.

Ian and Rylan, Brandon's cousins, had their 3 yr birthday party on Saturday. Their party was so fun. The kids played and played and played! It was a nice treat to spend time with everyone. We have another cousin's birthday party this weekend in Concord. His cousin, Carissa, will be hosting a cooking party at The Chef's Academy for her birthday. The kids make their own pizza! We are looking forward to that as well.

On Monday, we make another trip to Philadelphia. My mom will be joining Brandon and I on this adventure. It will be a shorter trip, since he is only getting an MIBG scan and urine test. We drive up on Monday and come home on Wednesday. We need your prayers for the upcoming visit! I pray the medicine is doing its job and keeping the disease stable. I wish that it did more than that, I wish that his scan would show a miracle had been granted - that he was free of NB. Only God knows what his plan is here. And we will continue the journey with Him. I ask that He continues to lead us and Brandon's doctors.

Brandon started this week's dose of CEP-701 this morning. After lunch, I will take him to school for a couple of hours.

Wendy

Thursday, January 15, 2009 3:51 PM CST

Brrr, its cold!! When its this cold, there should be snow on the ground. Its just not right!

Brandon went for his weekly visit to Brenner's on Monday. His counts were WBC 3.2 HGB 10.4 PLT 41 His weight was maintained at a whopping 60 1/2. I wish he could gain a couple of pounds - but I am sure it is tough with the CEP making him sick. We were proud of him though for keeping it above 60.

On Tuesday, he went to school in the morning. He was in such a great mood when he came out of there! It did him so much good to be with his friends! That afternoon, however, he started complaining that one of his ribs on the left side hurt. Well, we can never be at ease about pain...so we watched him overnight. On Wednesday morning, he woke up with it hurting if he twisted his body and it was tender to touch. So, I took him back to Brenner's to be looked at. They did a chest x-ray to make sure the bone looked okay. It wasn't a very intense checkup, since we are going to Philadelphia in less than 2 weeks. Dr. McLean said that since the x-ray looked fine we should just wait and see, maybe Brandon just pulled something. He was playing around with his new snowboard on Monday....??? I was happy about the x-ray looking normal, but still not completely satisfied. I am feeling better today because he hasn't complained with it hurting as much.

He started the next 5 days of CEP again today. And with the first dose, he vomited. But he recovered and went to school this afternoon for a couple of hours. I think maybe he should eat more with the breakfast dose. I really don't know. Diane from CHOP said kids had a harder time with the morning dose.

Oh, and my smart little 9-yr old who is a very, very picky eater and who is tired of me and his Dad riding his back about eating, explained this to me: "Yes, Mom, I have tried seafood before. You know, when I was swimming in the ocean and I took in some salt water...Well, fish swim in it and they 'you know what' in the ocean water, so I have tasted fish. I have tried seafood."

Umm, Ok, Brandon, nice try!

Wendy

Wednesday, January 7, 2009 9:12 AM CST

I just wanted to share this song - "There Will Be A Day" by Jeremy Camp. This song really touched me the night I first heard it. It was just a couple of months ago on one of the nights we returned home from Philadelphia. I was alone in the rental car taking it back to Enterprise. It was late and we had been up to Philly for Brandon to get his stem cells infused. Of course it was a very emotional time for me for so many reasons, everything going on with Brandon, the stresses on my marriage and my life, and just being alone having to deal with my thoughts and emotions. I don't get many alone moments to really sort things out in my head. And there, this song came on the radio and I just cried. It started as tears of sadness but the more I listened to the words it changed for me. I thought about Jesus. I thought about Him dying on the cross. I thought about God's promises. I found comfort in those words reminding me that my life on Earth is not all there is for me. That there is eternal life in heaven. And even through the pain and the fear of what was taking place in my life, I was not alone and I was loved.

I am not sure how to make it a link in the journal, so just copy and paste in your address bar if you would like to hear it/view it.

http://www.youtube.com/watch?v=QErgtGA7o0E

______________________________________________

Brandon is doing fine. His counts are still fine - WBC 6.6 HGB 11.4 PLT 49. He went to school yesterday, but is home today with some nausea. I am not sure if it is a virus. We will have to wait and see. He starts the next 5 day cycle of CEP tomorrow.

Wendy

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.
_________________________________________________________

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.

__________________________________________________________

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....

_______________________________________

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.

_______________________________________

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.
_______________________________________

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 received some donation money from the Davie Little League, I decided to rent a car to drive around Philadelphia. Originally I was going to use the subway or a taxi. I started thinking it might be worth it to get a $50 car rental for one day no matter how small the car had to be. Well, I was surprised!!! I called all the car rental places at the airport and found that a few were sold out and the others were charging $120 for a one-day rental of a car smaller than a Ford Focus. That's pricey!! Well I did some research online and found a Mini-Van, yes, a Mini-Van for $55 at Enterprise. See, I figured that with the city parking and the traffic, Mini-Vans aren't very popular there. So, I took it. A little nervous about parallel parking and garage parking with a Mini-Van, but at least I could take Brandon where he wanted to go when he wanted to go. So our flight to Philly went great, no delay. We arrived at the car rental and the guy was so nice that he gave me a crossover vehicle instead of a huge mini-van for the same price. I felt much better. I debated over adding the insurance to cover the car in case of anything. I even talked to the guy about it. I always get it when we travel for longer periods, but I wasn't sure it was worth it for one day. I decided to go ahead and add it. And, boy did I make the right call. Wednesday afternoon, the Kia Rondo and I had a battle with a concrete post in a very tight parking deck. I found that once you get the back side of the vehicle on the pole/post, it is very hard to get it off with out continuing to scrape the car. It had to be a lovely sight! The vehicle ended up with some dents, the pole/post survived with no damage. All parties in the car ended up fine, especially me, since I had decided to add the insurance coverage. No questions asked. Just turn the car in and be on my way.

We arrived in Philly early Wednesday morning. Between 9am and 11am, Brandon managed to purchase three new Webkinz. Two at the airport and one at the Bourse in Philly. We drove over to the Independence Hall area and ate breakfast. We headed over to the hospital around 11:30 to have his port flushed, to have bloodwork drawn and to have our visit at the clinic. Dr. Mosse and Dr. Maris were in San Diego for a conference this week. We visited our new nurse practitioner, Diane, and our social worker, Dana. Diane did Brandon's physical, we filled out some papers and she gave us the next dose of ABT. We left clinic and headed to the Heart Station to have his echocardiogram done. It was a quick test just to make sure the muscle in his heart looked fine. We ate lunch at the McDonald's in the hospital. As we headed over to the Ronald McDonald House, we found out why the rental cars were sold out. When I had spoken to the lady at Enterprise the day before, she said she wondered what was happening in Philly for the cars to be sold out. Well, it was the Democractic Debate between Hillary Clinton and Barack Obama. It was hosted by Drexel University, which is only a few blocks from the hospital, and aired by MSNBC.

Later that afternoon, we ventured out for dinner. We were also curious to see if we could find the debate. Well, we sure did find where the debate was. We found it and lots of supporters and lots of protestors. It was held at the National Constitution Center which is near the Liberty Bell and Independence Hall. Protestors of the Olympics and China carrying signs "Free Tibet" filled the lawn by the Liberty Bell. There were people walking around in George Bush masks. A group was riding around in a VW Bug dressed like Bill & Hillary Clinton with the top down. I really couldn't see it all. Police on every corner, what appeared to be Secret Service all around the building where the debate took place. It was something I will never forget.

After dinner, we crashed at the Ronald McDonald House. Brandon played with his toys a little while before bed. I spoke to Diane from CHOP. His echocardiogram looked fine. His counts were down a little and his chemistries looked fine. The only thing that did worry me was the results of his urine from our March visit. The report showed "slightly elevated." This test seems to show tumor activity. His numbers have been normal since the Modified Ice chemo. She said the report didn't show numbers, which was odd. They did collect urine while we were at clinic, so we will have the results soon. She said we would wait to see what the new test showed.

Yesterday morning we headed over to the airport to fly home. Very tight security and long lines. But we arrived early and were even able to eat breakfast before boarding the plane. Our flight was actually overbooked and they were looking for people with flexible travel plans to change flights. We actually arrived in Raleigh 20 minutes early! The first flight I've been on to arrive early! We made it home after lunch. The weather was beautiful! We ended up resting inside a while, but the outdoors was calling us. Brandon spent some time on his tire swing and on the trampoline. It was nice to be home.

Brandon will have his Day 3 dose today of ABT. He takes the medicine for 7 days. Then he is off of it for 14. We head back to Philadelphia on May 4 for a complete disease evaluation - Bone marrow biopsy, CT scan, MIBG scan, urine test and bloodwork. It will be a longer stay than this last one.

He has baseball practice tonight and a game tomorrow. I hope the weather holds out. It will be perfect for watching him play!

Wendy

Tuesday, April 15, 2008 12:21 AM CDT

Sorry its been so long since my last post...but as you know, no news is good news. We've been busy doing fun things.

Baseball has been wonderful! Brandon has played three games and has practice several times a week. We love watching him play. He is having a blast! His little uniform looks so cute! He plays on the Reds. He's been playing third base and left field. He even stole second base last night (which to those of you who have seen Brandon run, you will understand how special this is!!)

We've been working outside in the yard as the weather has permitted. Brandon loves flowers...not so much the work behind them, but he thinks they are pretty and he likes to pick them out. We put birdseed in the bird feeder in the front yard and he likes to see what kinds of birds eat there.

So, as you can tell by all of our activities, he is feeling great. He's been bruising alot, his platelets still aren't normal, but he doesn't need any transfusions. Guess just being a boy and playing rough will cause him to bruise easy. He even bumped his head on the couch and he has a battle wound on his forehead to show for it!

We leave tomorrow morning for Philadelphia. My sister, Ashley, is traveling with me and Brandon this trip. We fly out of Raleigh in the morning. His appointments are tomorrow afternoon. We will fly back on Thursday. This trip will be quick. He will get an echocardiogram and a physical. As long as everything checks out, he will get his next dose of ABT-751.

Please remember Brandon in your prayers. May this medicine do its job to keep things stable and if it is God's will, may his body be healed from this disease forever. We still believe in miracles!

Have a great week!
Wendy

Monday, April 7, 2008 6:41 PM CDT

The word of the weekend was RAIN. All baseball was rained out. Practice, rained out. Opening Day Events (including Brandon's pitch,) rained out. Brandon's First Game, rained out. Disappointing, but we definitely needed the rain.

His first game will now be on Thursday night. They will not reschedule the Opening Day events. It was an honor just to be asked to throw out the first pitch. We are looking forward to going to his first game this week.

Brandon's checkup at Brenner's last Thursday was fine. His counts were down a little due to him battling this cold/virus. His chemistries looked fine, too. We go back for another checkup this Thursday. We return to Philadelphia next Wednesday, April 16th. Ashley is going along with me and Brandon. We are flying this time, since we only have to be there for one day. They will do an echocardiogram, a physical and give us the next dose of ABT.

Well, as I said, Brandon was battling a cold/virus this week. I was worried about him because he ran fever for two days. But I soon found out it was indeed a cold, since I came down with the symptoms too. Nasty head cold - fever, cough, stuffy nose, headache. I am finally feeling better but Brandon and I both still have some remnants of the cold. I think Michael is the next victim! Ashley already got infected too. I am happy about one thing - Brandon is able to fight it on his own!

Brandon has a birthday coming soon! On April 30th he will turn 9!! I can't believe it - 9 years old! I think while we are in Winston this week we will look for a birthday party theme. I am guessing this year will be....BASEBALL. We'll see what the little man decides.

Please keep Brandon and all the other brave children fighting cancer in your prayers.

Wendy

Monday, March 31, 2008 8:43 AM CDT

So far, so good...Brandon is tolerating the ABT well. No side effects to report yet. He will get his final dose of this cycle tomorrow. Which is an interesting issue - I took his dose out yesterday morning before Church and realized I am one pill short. CHOP is trying to overnight me an extra capsule. I will know more later today. We go to clinic tomorrow for his weekly checkup. He's got a little cough and some drainage causing his voice to sound a little strained. No fever, though. I hope it is just allergies or maybe a cold. Time will tell.

We are so excited about baseball starting this Saturday. Brandon has been asked to throw out the first pitch at the opening ceremonies for Davie Little League. This will take place Saturday morning before the games start. I believe his game is first. I am a little nervous for him about the first pitch - Amy tells me that opening day is a somewhat of a big deal, lots of people there (she said around 500.) He just smiles real big when we talk about it. What a great honor!

Wendy

Thursday, March 27, 2008 7:55 PM CDT

Finally, here's the update! Sorry, I couldn't access Brandon's website while in our room at the RMH.

We had an uneventful trip up to Philly. Smooth sailing other than more traffic than what I expected. We left home at 1:00 pm and arrived in Philly at 10:30 pm. Thanks to the traffic we were delayed some. Brandon slept, watched a movie and listened to music to stay entertained in the backseat of the car! We were pleasantly surprised when our friends at the Ronald McDonald house gave us the "penthouse suite." We had heard of this room from another family, but never had the privilege of staying in it. We had a fireplace, our own bathroom, a table to eat at and two "sleep number" beds. Normally, you are not allowed to take food to your room, but because Brandon had the chicken pox exposure a few weeks ago, we were allowed to eat in our room so Brandon would infect anyone (just to be safe for other sick children - he has no signs of chicken pox.)

Monday morning we arrived early at the hospital to get blood work done before his anesthia to have the bone marrow aspirates and biopsy. His counts looked great! WBC 3.1 HGB 10.2 PLT 68 He had the procedure done and it took a little bit for him to wake up. We left the hospital around 1:00. My Mom and I got our Philly Cheesesteak fix out of the way on Monday. Brandon did wonderful. The bone marrow sites on his back didn't bother him much at all. Monday night, he had to drink the contrast for the CT scan on Tuesday.

Tuesday was the CT scan and Echocardiogram. The CT scan went very quickly. We some time between appointments so we headed over to the Independence Hall area of the city to find a new Webkinz. We made it back to the hospital for his echocardiogram and it too went smoothly. Tuesday afternoon went headed to Penn's Landing to find something to eat and look around.

The big day was Wednesday. We had an appointment with Dr. Mosse to go over the results of his tests and to find out if the ABT-751 was ready for him. There was a hold up on the Clinical Study - we weren't sure if we would get the medicine on Wednesday or not. I have to say Wednesday turned out to be a great day. Brandon's urine tests from 2 weeks ago were normal. His CT scan did not show any new tumor masses. The one that remains is the one on his spine. It has not changed since February. It is 1 cm x 1 cm. She compared the CT to the MIBG and believes that with the urine showing normal that the mass is no longer active disease. She believes it could have some scar tissue and could be differentiating (maturing into normal cells.) Good test result. The bone marrow still shows NB, but it has improved since the last biopsy in February. Brandon's echocardiogram was normal which means his heart is working just fine. All of these test results make them feel more confident that now is the time to capitalize on a "quiet" time with his disease by using a medicine like ABT-751. Brandon was able to get the medicine on Wednesday. We had lots of paperwork to fill out for the study. He received his first dose at 11:30 and we stayed in clinic for about an hour so they could observe him for any reaction he might have. He had a little tummy ache but it went away. We stayed the night in Philly just to be close to the hospital. I just felt better by staying to make sure.

Here's how the medicine will go. He takes 2 capsules once a day for 7 days. He has 14 days off the medicine. This completes one cycle of ABT-751. A cycle is 21 days. We have to go back to Philly after the first cycle for a physical, echocardiogram and to get the next dose of medicine. After the second cycle we will go to Philly for complete disease evaluation - MIBG scan, CT scan, bone marrow biopsy, and urine tests. As long as he is having a response we can continue on this medicine. Weekly he will need to go to Brenner's for a physical and bloodwork to check counts and metabolic panels. We already know we will be back at CHOP on April 16 and the week of May 5.

As far as side effects, the main one is constipation. Because ABT-751 works with the nerves, the action of the bowels gets slowed down. Also there have been some kids that have tingling and pain in their hands and feet. Most side effects will show up between days 5 and 15 of the 21 day cycle. These effects are not permanent, they should resolve by the end of the cycle. That is of course if he has them. Also, some kids get really tired and some have tummy aches. Loss of appetite is also a possibility. We will just have to see how he does. I am happy to know that he isn't in the 10ho can't even digest the medicine.

So, he's got two doses under his belt. He's sitting in our living room floor playing with his wrestling action figures. He just ate his favorite dinner - C's BBQ seasoned french fries with Bojangles' chicken strips and a glass of sweet tea. The Carolina game is on. We left Philadelphia this morning at 9:00 am and made it home around 5:30 pm.

We are so happy to be home and so blessed by the results of Brandon's tests this week! Thank you, Lord, for all you have done and continue to do!

Wendy

Saturday, March 22, 2008 6:37 PM CDT

Wow, time flies when you're having fun!

Brandon has been busy catching up on school work so he can get his report card on time. He worked really hard and he's almost finished!

We went to see the Harlem Globetrotters in Winston last night. It was so fun! We had floor seats and we sat across from the Globetrotters players' seats/bench. I couldn't believe we were practically on the court! The team captain is Special K. Brandon had seen them on tv about a month ago and he loved it. He purchased a Special K jersey and a Globetrotters sweatband. He looked so sweet! Special K spotted him on the sidelines and came over, gave Brandon a high-five and chatted with him over the whole arena so everyone could hear! He even made sure that during the autograph session at the end of the game that he came to give Brandon one first. Brandon loved it! It was fun for all of us!

Today was the Easter Egg Hunt at our Church. Brandon had a blast with his friends! Lots of eggs and fun games to play and way, way too much candy! We had our Easter dinner together at my Mom and Dad's this afternoon. We had our family Easter Egg hunt at their house too. Brandon won most of the egg hunts at his Nana and Papaw's! We even rode bikes today. The weather has been beautiful!

Let me backtrack a little - Michael had a wonderful birthday. Thank you for all the well wishes. Brandon and I made cupcakes for him and Brandon wrote a letter on each cupcake to spell out HAPPY 37 BIRTHDAY DAD! We made sure he had his favorite dinner - steak and potatoes!

The plan for Philly is this - we leave tomorrow, yes Easter Sunday. My Mom is going with me and Brandon. Brandon will have anesthesia early Monday morning to have bone marrow aspirates and biopsy. He will have a CT scan and Echocardiogram on Tuesday. We meet with the doctor on Wednesday morning to go over the results and sign the papers to begin ABT-751. I believe he will receive his first dose on Wednesday in clinic. They will want to watch him for a couple of hours to make sure he doesn't react to the medicine.

Please remember us in your prayers for safe travel and of course remember Brandon as he begins a new course of treatment.

Happy Easter!
Wendy

Tuesday, March 18, 2008 8:24 AM CDT

We're heading back to Philly! Brandon pulled through yesterday with his platelets! They needed to be at least 25 and he shined with 40!! Other numbers were good, too - WBC 3.2 HGB 10.1

So all I know today is that we have to be at CHOP on Monday for sedation to do bone marrow biopsies. Lots of tests to be on the Clinical Trial for the ABT-751. When I get more details of the visit, I will let you know. We are moving forward with the ABT-751 as his next step in treatment.

We are definitely spinning here. Its going to be interesting arranging travel plans with Easter weekend coming up. And then knowing there will be many trips to Philadelphia. We will need to work on our resources for travel.

Brandon continues to feel great. No more knee pain - Praise the Lord! Brandon went to baseball practice on Saturday. He gave it his all. Watching him on the field puts a smile on my face. He had so much fun. We went to Church Sunday. I can't even tell you how great it was. He participated in the Palm Sunday singing with the children. Our Sunday School class had Bible Study Sunday night and we were able to go to that also. Yesterday we went bike riding and his cousin, Courtney came over to visit. They had a blast playing outside.

Today is Michael's birthday. Brandon and I have a few surprises up our sleeves to make Dad feel special today. Nothing fancy, just some simple things that show our love. It is a blessing to be able to spend his birthday together at home!

Wendy

Friday, March 14, 2008 11:45 AM CDT

The word of the day is "stable." Brandon's MIBG scan shows his disease is stable. There are no new places to report. Dr. Mosse was pleased, stable is good news.

After seeing his scan and discussing the knee pain from last week further, his doctor feels better about the pain. She doesn't believe it was from the NB. It went away on its own (at the same time we stopped the Neupogen.) We are just relieved that the pain is gone!!

The plan is to check his CBC on Monday at Brenner's. As long as his platelets can maintain 25 for one week, he will be eligible to be on the Phase II Clinical Trial of ABT-751. This drug is known to keep NB quiet and stable. While his disease is quiet, they want to capitalize on that by adding this drug as his treatment. It would not require hospitalization, he would take it in pill form. The only thing about the ABT is that it will require lots of travel to Philadelphia. The ABT-751 is the top recommendation from his doctors.

If his platelets do not hold at 25, they want to start him on a combo of 3 medicines using a different approach to cancer treatment. Zometa, Cyclophosphamide and Celebrex used together attempt to stop the blood vessels from feeding the cancer cells the blood they need to live. He would be on this combo until he could switch over to ABT-751.

As far as another MIBG treatment, they want to hold it in our back pocket for later in case the disease takes off again. We would have this more intense treatment to use to put the brakes on it. It isn't safe right now to give him something so strong. His bone marrow is tired and he would be a risk for infection. They also know that next time he gets the MIBG treatment he will immediately get his stem cells back 2 weeks after.

We had a nice, short trip in Philly. We spent yesterday outside enjoying the weather. Brandon has baseball practice tonight. Oh and there's this little thing called the ACC Tournament that has taken over our house today. Both my boys (Michael & Brandon) are decked out in their Carolina Blue pulling for the Tarheels!

Wendy

Monday, March 10, 2008 7:34 PM CDT

First let me catch everyone up. Brandon's knee pain went away on its own. It seemed to go away when the neupogen injections were stopped. I'd like to keep on believing that this was the problem. :o) We went for blood counts on Sunday at Brenners. He didn't need any blood transfusions. Numbers were down a little - WBC 2.4 HGB 10.5 PLT 36

We are in Philadelphia. We left this morning around 9:00. Traffic wasn't bad at all. No flying debris to attack the rental car. Weather was nice - low 50's and cloudy. Lots of State Troopers out today, good thing Michael was driving and not me with the lead foot!!

All is well. Michael is playing a videogame, Brandon is playing with his wrestling action figures and I am on the computer....

Tomorrow we will arrive at the hospital around 10:00 for bloodwork and urine test followed by MIBG injection. His scan is scheduled for Wednesday at 12:00. We then meet with Dr. Mosse to discuss the results and the plan.

Please remember Brandon in your prayers.

Wendy

Thursday, March 6, 2008 11:23 AM CST

Let me start by saying the past few days have been a whirlwind of activity!

Saturday night we went to see the Monster Trucks in Winston. Brandon took his friend, Chandler, with us. We ate dinner together and took the kids by Toys R Us. We had some extra time before the show. We had fun at the show. We got to see the monster trucks roll over 3 times! It was cool. The boys bought T-shirts and ate popcorn. I am glad we were able to take Brandon.

On Sunday, we went to Church for Sunday School. Brandon was happy to see some of his friends again. Sunday night we had Bible study with our adult class. We had dinner and the kids played while we had study. It was wonderful to be out and about. We enjoyed the study and the fellowship with our class. Brandon had fun, too.

My dad came home late Sunday. He's feeling better. They are continuing to follow him. They are trying to figure out some things about his throat and lungs. I just know he has several appointments over the next week. We are happy he feels better!

Monday the weather was great! Brandon and I spent some time outside throwing the baseball and jumping on the trampoline. We had so much fun! He taught me some new games on the trampoline - one called "bacon" and one called "king & queen." We even pretended to be army men and spies. I just cherish moments like that!

Tuesday we headed to clinic to check his counts. WBC up to 11.0 PLT 18 HGB 8.2 They decided to go ahead and give him platelets and blood to boost him for his upcoming baseball practice on Wednesday. So we spent the afternoon in the hospital.

Now, here comes Wednesday. Wednesday was to be Brandon's first day back at school (from 8:30 - 12:30 - half day) and Brandon's first day of baseball practice. I was going to head to the office to do a little work while he was in school. He woke up with knee pain - limping all over the place. He couldn't put much weight on it at all. Walking was a task and running seemed to be out of the question. He had mentioned his knee hurt a little on Friday, again once on Saturday and then Tuesday night. We thought it might be bone pain from the Neupogen injections he's getting, so we tried not to worry too much. But the Wednesday morning there was no relief and he limped a lot. He even asked me to call CHOP to see what they thought. We were so devastated yesterday with the pain coming on like it did. Being the trooper he is, he went to school anyway. He never stops amazing us! I picked him up from school and the tylenol I had given him in the morning hadn't really helped. I did talk to our team in Philly and they pulled up his MIBG scan from February and it did show NB in the left knee where his pain is. So they said they were concered. We are scheduled to go to CHOP on Tuesday and Wednesday of next week to repeat his MIBG scan and work on the plan.

Around 2:00 I received a call from Brandon's principal. She dropped a bomb on us. The little girl that sat across from Brandon at school left school early with what appeared to be chicken pox!!!!!! Oh, my.

Needless to say with all these issues - knee pain, chicken pox....I was on the phone all day with doctors in Philly and at Brenner's. So we got a gameplan together.

Today we are at Brenner's. Brandon is receiving IVIG. This is an infusion of immunoglobins to help boost his immune system since he was exposed to chicken pox. This is a 4 to 6 hour infusion. We will be here all day. They also did an x-ray of his knee. I haven't heard anything yet.

Amidst all this drama, Brandon has continued to carry on and he had the best night last night. Baseball practice! Yes, he went to baseball practice. He limped out on the field with his teammates to play the game he loves! It was unreal to watch him out there trying to do all the things his coach asked the boys to do. He fielded ground balls, played third base and even attempted to run a race with the other kids. More determination and willpower than I have ever seen! He received wonderful news when his coach announced he was named team captain for his attitude and giving 100 percent. I have to admit I teared up. He is such a deserving young man and he takes it so serious! Baseball practice was something we needed. Michael and I love to watch him doing the things he enjoys. It is bittersweet - he wasn't 100 percent but he gave 100 percent. Just watching him last night gives us the boost we need to keep going. Thank you for a wonderful night last night!

Please say extra prayers for Brandon.

Wendy

Saturday, March 1, 2008 12:27 AM CST

No Transfusions!! Brandon did not need platelets or red blood!! We went to clinic yesterday and his counts were a blessing. WBC up to 7.0!! Yes, 7.0!! (In normal range with a little help from the neupogen injections.) HGB was 8.8 and Platelets were 27. Still not normal, but much safer and high enough that he didn't need a transfusion!

We left clinic and headed over to Toys R Us for some celebration shopping. I can't remember the last time he was in that toy store! He picked out some new wrestlers, a Bionicle (Legos)to put together and a few monster trucks. He spent some time riding a bike around the store. He needs a new one and I think he found one he likes. We ate lunch at O'Charleys (gift card provided by a local church.) It was such wonderful treat to spend the day with him having fun out of the house!!

Brandon's feeling great. He is excited about baseball starting! Coach Jon called last night to say he has practice next week! Brandon will be able to go to school some next week as well.

My Dad is still sick. He had the flu and last night he was admitted at Baptist with pneumonia. Mom said he was feeling a little better today. At home yesterday, he was having trouble breathing and was weak. I think they will keep him a couple of days. They started him on a strong antibiotic that should really help.

Wendy

Tuesday, February 26, 2008 1:57 PM CST

Looks like your prayers worked! Brandon's white count jumped up to 2.5 from 0.7!!!! YIPPEE!! Platelets even held more than I thought. He had 3 nosebleeds this weekend, so I was really worried about him being able to make it till Monday. I just knew he would be around 5 on his platelets, but I was wrong, it was 17! Borderline for a transfusion. So we went ahead and gave him the platelet transfusion just to be safe. His hemoglobin held at 9.4. Needless to say, we were thrilled! So much lifted off my shoulders. I've been really worried about his body recovering!! So, THANK YOU FOR PRAYING!! We don't go back to clinic until Friday.

Also, I was blown away by all of your support after my last post. The guestbook was filled with words of encouragment and hope. We definitely felt all the love you were sending our way and it made a difference.

We do have a new drama to deal with. While Brandon and I were at clinic on Monday, my dad was at his doctor's office. He tested positive for the flu. Yep, the flu. He even had a flu shot, but it doesn't cover for all types of the flu. His symptoms started Saturday night. Brandon spent Saturday afternoon at my parents house. Michael took me out to dinner for Valentine's Day....I know you might think its a little late for that, but I was in Philadelphia on Valentine's Day, so we had to wait. We had a wonderful time. Since Brandon was at their house, he could possibly have come in contact with the Flu virus. His doctors decided to put him on Tamiflu as a precaution to try to prevent him from getting the flu. He doesn't have any symptoms, but we need to be careful.

We are taking Brandon to see the Monster Trucks at LJVM this weekend. I think it will be a blast to get out and enjoy something together!

Wendy

Friday, February 22, 2008 2:11 PM CST

A little bit of a roller-coaster this week...

We were so thrilled to see his white count on the move from 0.4 to 0.7 last week. Well, on Monday it was even better it had moved to 1.2! We were so happy! I made plans for Brandon to head back to school next week for a couple of half days. We planned on going out in public to do more things - the small things most take for granted. The grocery store was a treat this week! Brandon started talking of friends coming over to play. Then, we went to clinic yesterday and were disappointed to find his white cells dropped back to 0.7. Disappointing but also disturbing and worrysome. His platelets aren't any better - he's getting platelet transfustions twice a week and there are no signs of recovery on those. They are the last to recover and the white cells are first. So, you can see the concern here too.

I talked to Dr. Mosse in Philadelphia and she said it is normal but frustrating. The counts will fluctuate as he starts to recover. It is reassuring to hear but still the day to day grind is hard.

Brandon has been dependent on blood and platelets from anonymous donors for the past 7 weeks. Without those transfusions he wouldn't be alive. His body is not making the cells. His bone marrow is tired and the neuroblastoma is still in it which my common mind tells me makes it hard for his body to make healthy cells. So, I want to say thank you to everyone who donates blood and platelets. You truly help to save lives. And not just people involved in accidents who need blood products. People like my little 8-year old who is battling for his life. Thank you for helping him in his fight.

So, we wait. We wait for this one month. This month where Brandon's body needs to grow cells from those baby stem cells he received in Philly. A safe level of blood counts is needed in order to proceed with further treatments. It is not safe to give him anything now. The accutane is the bridge between treatments this time.

I am sorry for the bluntness of this post. I don't want people to think I sugar-coat things. I try to be hopeful and focus on the positives, but some days the reality of this becomes too much. I feel like I should share that as well, because it is a part of this - a part of our lives. But, we continue to hope. The smile on Brandon's face is enough to keep anyone going. I don't know how he does it. He is going through so much. So much that a little boy shouldn't have to endure. And he does it all with a sense of humor, a positive attitude and a love for life that is admirable.

On a good note, his weight is back up from 64 to 66 pounds. Here's my positive point for the day! I have to leave on a positive note. And remember, his tests in Philadelphia showed a good response to the treatment. We are grateful that the disease was reduced and this is a move in the right direction.

Have a great weekend. We plan on doing lots of fun, together things at the house again this weekend. I am sure it will involve videogames and movies. We go back to Brenner's for a checkup on Monday. I pray that his counts are on the way up, up, up!!!

Wendy

Sunday, February 17, 2008 3:23 PM CST

Finally the long awaited posting - I am so sorry I waited this long to post. We've been busy.

Thursday morning we arrived at CHOP at 8:00 for Brandon's MIBG scan and a CBC to see if he needed any transfusions. When Dr. Mosse arrived, the first thing she asked me was "Have you seen his counts yet?" Brandon started the turn with his numbers! His white count was up to 0.7 and he had an ANC of 174!!! She just laughed and shook her head. She said leave it up to Brandon to wait till the last minute, the day before we headed home to show them that he could grow healthy cells on his own. So this was very, very good news. Very encouraging and she was happy. We were all worried about his bone marrow not being able to recover. She again stressed how strong Brandon was - he always amazes them with what he can do. Just like waiting till the last day of stem cell collection back in December to get the most cells collected! I asked her if the stem cells he received this week could cause this increase in WBC's and she said no. It is too early for them to do anything. It will be a couple more weeks. She sent us home with the daily GM-CSF (neupogen) injections to try to boost those white blood cells.

The MIBG scan showed a good response to the treatment. Some of the places were gone and the ones that remained had improved. The doctors feel that Brandon will be eligible for another MIBG treatment in the future. We just don't know when yet. But it is comforting to know that his disease responds to the treatment and that it can be in his arsenal for later use.

Of course, we wish the disease was all gone, but we are happy that he did get a good response from the treatment. We are moving in the right direction and this is always a good thing. They sent us home with the plan of doing a month of Accutane to let Brandon's marrow recover. He did really well last time on the Accutane. It helped and I hope it does the same this time. Dr. Mosse said some of their lab studies showed that the Accutane given in conjuction with the MIBG treatment helps with the effects of the MIBG. I agree based on Brandon's experience with it in 2005/2006. We will go back to CHOP in a month to repeat his MIBG scan.

We had a wonderful time at the hockey game. Brandon bought a Flyers jersey and hat. He was proud of his new attire! Our seats were amazing - they were suite seats. The hockey game was a good one. A few fights broke out and several points were scored.

We also headed over to the Independence Hall area of Philly looking for a toy for Brandon. Luckily, I found street parking. We started walking up the historic street with snow falling all around us and the city skyline in front of us. It was very memorable.

Thank you for your kind words and prayers for our friend. Thank you for continuing to follow Brandon and support us in so many ways!

We go back to Brenner's tomorrow to check on his counts (Monday.)

Wendy

Wednesday, February 13, 2008 5:04 PM CST

We have some very sad news today. One of our very, very dear friends passed away last night. Pat Brophy, the nurse practitioner from CHOP, has been such an important part of our lives since we first met her in 2005. Pat was always there - all I had to do was call her and she would take my call right away. She always had time for me, for my questions and concerns. She always knew what to say and how to say it. She could move mountains to get things done for you. She was such a dedicated person. It was very somber at the clinic today. Things will never be the same around that place. We lost a wonderful, loving soul - but heaven gained an angel. She will surely be missed.

Yesterday Brandon had his CT scan. Then we found out his MIBG scan would be delayed a day. The MIBG isotope comes from Canada and there was a problem with the flight to get it here. So, things were switched up. Today we went to clinic and Brandon received his stem cells back. At 11:05, they began to push his stem cells in. By 11:15, he was done. They gave him Tylenol, Benadryl and Zofran to keep him from reacting and getting sick during the process. He did wonderful! No vomiting, no reaction. At 12:00 they let him go. We headed over to Nuclear Medicine and he received his injection. His MIBG scan is scheduled for tomorrow at 8:00. Then we go meet with the doctors.

We did find out some results. His bone marrow is still positive for NB. However, it has been reduced. Originally it was packed with NB cells, but that has been reduced. The CT scan of his head showed normal bone. The tumor on his vertabrae has shrunk 50% - 60%. Dr. Mosse isn't as worried about a spinal cord injury now.

Of course, we wanted to see these tests negative for NB, but we are happy that he has had a response and things are shrinking and not growing. Dr. Mosse is worried about the marrow. It is hard to clear NB from the marrow. The stem cells that were injected will have somewhat of a hard time finding their way through the marrow with the NB to bone so they can grow. She hopes that he will be able to get to a safe level with his counts - not a normal level. She doesn't want him to have to be dependent on blood transfusions. We will just have to wait and see how his body does. We will start the daily Neupogen injections to try to boost those cells.

As far as the next steps for treatment, we will know more after tomorrow's scan. For now, they plan on giving Brandon more of the Accutane until his stem cells engraft and he starts to have better counts. She is considering starting him on ABT-751 when his marrow has recovered. From what little we discussed today, this drug stops the NB from growing/spreading. Kids have taken it for months to years as long as they have a response. The goal here is to be stable. Stable is a good word in the NB world. She reminded me that we were able to put the brakes on this and now he is showing a reduction which is also good. As I said, we will know more tomorrow. She wants to spend more time with us. At this point, they haven't ruled out another MIBG treatment. They just have to wait and see how this one did. The scan tomorrow should give more information. In the future they will weigh out the risks against the benefits. Its nice to know that it may still be an available option.

We headed back to clinic around 5 to have his port de-accessed. He finished the IV antibiotics this afternoon! Yippee - I can snuggle with Brandon and not worry about that port needle!

We will be staying here tomorrow night. The Ronald McDonald house gave us 4 tickets to a hockey game - the NHL team in Philly is the Flyers. That will be a nice treat. Can you believe Papaw is going to a hockey game???

I'll update again tomorrow night to share the results of the MIBG scan and to share the details of our meeting with Dr. Mosse.

Please say a prayer for Pat's family and friends. Keep Brandon in your prayers, too.

Wendy

Monday, February 11, 2008 3:16 PM CST

First, let me say thank you to everyone who drops by this website to check on our Brandon. Thank you to the ones who post messages. We love to read them - they are very encouraging and mean so much to us. Thank you, thank you, thank you for all the prayers!!

Now let me explain the trip up here.

THE COP:

On the drive up, I was pulled over in High Point, yes, High Point for speeding. I didn't make it to I-95! I was still on 85! Well guess there's a section where the speed limit is 55 and I was traveling faster than that (72.) The officer walked up and asked me if there was any reason why I was speeding. I said no - I just have a lot on my mind. I told him where we were headed. He took my registration and license and walked back to his car. My heart was racing at this point - we definitely don't need the added expense related to a speeding ticket. I watched him in my rear view mirror. He'd type a little on his computer, drink some coffee, write a litte, drink some more coffee. Then I saw him fold something up and get out of his car and head my way. He handed me my license and registration and told me that he NEVER gives people warning tickets but in this case considering our situation and the circumstances, he was only giving me a WARNING! He said he wanted us to get to Philly safely. Whew! Talk about lucky!

A STRONG WIND:

The weather was horrible! From Virginia all the way to Philadelphia the wind blew so strongly. The gusts would sway the car, the trees were blowly wildly and debris was flying everywhere.

THE WINDSHIELD:

On I-95 near Richmond, a strange flying object hit the windshield of our rental car and left its mark. There's a serious crack in the windshield. Brandon says it looks like a spider.

SNOWFLAKES:

Yes, we saw some snow. Just flurries, but still it was snow. We saw the white stuff just as we entered Philadelphia, around the airport. The high wind would blow it up from the road and it looked cool.

So, there's how our adventure took place. The scare of a speeding ticket, a broken rental car windshield and terribly cold wind. You just have to laugh! We're all safe and sound.

----------------------------------------------------------

Wow did things move quickly at the hospital! We were told to arrive at 8:30. They drew his counts and we met with the doctor who was performing the bone marrow aspirates and biopsy. By 9:10, we knew his blood counts. WBC still 0.4, Platelets 20, Hemoglobin 11.1 - so no turn around. They went ahead and took him back for his procedure around 9:30. He was put to sleep with his favorite giggly juice or laughing gas as he calls it. He was out in no time and they had already ordered his platelets. When he awoke from the procedure, he ate McDonald's and then they gave him he pre-meds for the platelet transfusion. He received his platelets, they did a bandage change on one of the sites and sent us on our way at 1:30. Yes, 1:30!

Brandon is unbelievable! He was sitting up, sitting criss-cross applesauce after having bi-lateral bone marrows done! He was eating fries and nuggets. He was watching cartoons! He was smiling. I don't know where he gets it from - but he is so strong!

Since his bone marrow hasn't been able to recover from the first MIBG treatment he will not be able to get another one. He will be receiving his stem cells. They are trying to get it arranged for this week so we can do it while we are here and head home. He has a CT scan of his head, chest, abdomen and pelvis tomorrow at 8:00 am. He has an MIBG scan on Wednesday morning at 8:00 am. Following the scan, we go meet with the doctors to discuss the results and the plan.

We're still praying for his body to be healed again. Wouldn't it be the greatest miracle to have the tests show he is in remission again?? Keep those prayers going up to the One who makes all things possible!

With hope,
Wendy

Sunday, February 10, 2008 9:06 PM CST

We made it to Philadelphia safe and sound. We are tired. Brandon has his first test tomorrow - bone marrow aspirate and biopsy at 8:30 in the morning.

I will post more later. The trip up included lots of interesting things including a cop, a strong wind, a windshield, and snowflakes. Sounds interesting, huh. Check back tomorrow when I have time to post the details.

Thank you for your prayers!
Wendy

Thursday, February 7, 2008 9:14 AM CST

We need lots and lots of prayers.

Yesterday I talked with the doctor from CHOP in detail about everything that has been going on with Brandon's counts and this bacterial infection. And the new word is that if his counts do not recover by next week when we are up there, it is too dangerous for him to proceed with another MIBG treatment.

I will let that sink in....

The best treatment plan they thought would be to do two of these MIBG's and then use an oral medication at home. Here's one of those forks in the road. It is very scary and very saddening. Oh, so much unknown...

We reminded ourselves to trust in the Lord and know that He is leading this. We just have to continue to put this in His hands. He's taken care of our baby before and He is doing it now, even if we don't understand.

So, as I said before - Pray for Brandon. Pray that God's will be done, our Faith be strong to stay the course, Brandon's body be strong for the upcoming tests and whatever treatment the Lord puts in our path.

We still go up on Sunday - he will have tests on Monday, Tuesday and Wednesday. Then we go from there. If his counts do not recover, he will receive some of his stem cells back to boost his immune system. Then we get a new plan. If his counts show signs of recovery, he will be admitted and have another MIBG treatment followed by a two-week return trip to Philly to receive his stem cells.

Wendy

Monday, February 4, 2008 8:44 PM CST

We made it home to watch the Superbowl!!

The infectious disease doctor came to see Brandon on Sunday around lunch. The lab finally ID'd the bacteria. It is a long name - basically it is a bacteria that lives normally in your mouth without causing much trouble. However, in Brandon's body with practically no immune system it can cause the drama of the past week. Antibiotics work well to kill off the bacteria, so they sent us home with the same antibiotic he had in the hospital. A nurse from home health came out yesterday and showed me how to give Brandon his antibiotic every eight hours. It goes into his accessed port (like an iv.)

He is doing well although very disappointed that the NE Patriots didn't win the Superbowl! We are definitely soaking in all the joys of being home. Walking through our front door yesterday was the greatest feeling! Home, sweet home!!

We head to Philadelphia on Sunday. Brandon will have bone marrow aspirates and biopsy on Monday, CT scan on Tuesday, MIBG scan on Wednesday. Then we meet with the doctors to discuss the results. As long as there has been improvement, he will be admitted for another MIBG treatment like we had at the end of December. Please pray hard that he's already received a miracle - that he is in remission again!

Wendy

Friday, February 1, 2008 10:00 AM CST

Still in the hospital...

This just gets more interesting. A culture that grew at 79 hours causing this issue. Two cultures drawn after that both negative - one at over 96 hours out and the other at 72 hours out.

Microbiology was unable to identify the bacteria - it was too small to identify. They did determine that it was anaerobic (does not need oxygen to live.) This caused them to add a new antibiotic to his treatment. He is on two different antibiotics now. Yesterday afternoon they came in and said the lab could not match the bacteria with a "named" bacteria, therefore they had to be safe and assume it was not a contaiminent. The original plan was to go home today, but since they couldn't ID the bacteria, they needed to treat it in the lab for two days with the antibiotic he is taking to make sure the bacteria was sensitive to it. Basically, make sure he is on the right meds. He will be sent home with the antibiotic for a 14-day treatment. His port will have to stay accessed as he will need the antibiotic through an IV. A nurse will come out and show me how to do this. I believe it will be every eight hours. They talked about letting us go home on Saturday.

The infectious disease doctor just feels that since Brandon has been neutropenic for so long that we should treat this as a real infection to be safe.

Brandon wasn't too thrilled to hear all of this. We spent some time fighting off the tears. Its been so long since he's had to deal with some of these things - like having his port accessed at home which means no shower. Brandon loves to take a hot shower!

I haven't seen the doctors today. I do know that his counts haven't changed.

WBC 0.3
PLT 24
HGB 8.4

I keep waiting on the neulasta to help pump some wbc's out, but we haven't seen it yet! I am positive he will get blood and platelets before we go home.

Keep praying hard for Brandon. He feels great. No fever. Just this pesky blood culture causing havoc. We will do what is necessary to make sure he is taken care of - even if it is been overly cautious.

Wendy

Wednesday, January 30, 2008 10:08 AM CST

****Added Photos to Photobucket Website****

Use the link below - the new albums are dated:
2006 12 31
2007 01 31
2007 02 28
2007 03 31
2007 04 30
2007 05 31
2007 06 30
2007 07 31

I'm getting closer to current!!

Be sure to watch the remix I created on the photobucket website called True Hero.
______________________________________

Can you believe I am typing this from the hospital again? Your reaction is probably no different than ours.

We received a phone call yesterday around 3:00. The blood culture they drew on Friday when Brandon was admitted for fever was now growing "gram negative rods." Okay, that basically means the blood culture was showing positive for a bacterial infection in Brandon's blood. So as a precaution he had to be admitted and re-started on antibiotics until they had more information.

Throughout all of Brandon's treatment he never had a positive blood culture so all of this is new to us. Brandon's first reaction was to cry. He was so sad about having to come back to the hospital. My heart just broke for him as he cried and ask me why this had to happen to him. I know he meant ALL of this. That little boy has endured more than most people and he's only 8. He is so brave and so strong. He immediately called Michael at work to tell him what was going on. I also think he needed some encouragment from his Dad. Michael is so good at that. Michael was like me - he wondered how this happened and exactly what it meant. Like I said, we've never been through this.

When we arrived at the hospital I talked to the resident at length about this. She thought it was impressive that Brandon had always had negative cultures. Just more proof how strong he and his body are...

So here's what I found out about this. Blood cultures are kept in the lab for 5 days to see if they grow anything. In most cases, if there is a bacteria in the blood it grows quickly usually within 24 to 48 hours. That's why they let us go home on Monday, his cultures were negative. After receiving a positive culture, it takes an additional 12 hours to identify the bacteria. All we know at this point is that it is "gram negative." E-coli is a gram negative bacteria. Of course, our bodies have bacteria from our mouths to our intestines. Bacteria that our bodies fight because we have white blood cells. By Brandon's counts being so low (called neutropenia), he is at high risk for infection because he has nothing to fight with.

The issue here is whether or not this is a true result or an error or a contamination. His culture showed positive at 79 hours. Also, the culture drawn on Sunday is still negative. The doctors are waiting for the microbiology report to show what the bacteria is and then they will talk with Infectious Disease to figure this out.

Meanwhile, we are inpatient. Brandon is receiving one antibiotic every eight hours via IV. They are allowing him to be unhooked from the IV pole - he doesn't need fluids since he is eating and drinking well. This makes the stay much easier and better for him. He is free to play all over the room, go to the bathroom whenever he needs to and take a bath without having to drag that pole everywhere.

In his favor is the fact that he hasn't ran anymore fevers and that he is feeling so well. He's playing, eating...not acting sick. They said if he had a bacterial infection he should appear sick and possibly really sick.

Guess we just have to wait. Ohhh, patience. A quality that we've learned all to well. But sometimes hard to practice!!

Pray for Brandon - that this positive culture is an error and that his body is free of a bacterial infection. Pray that the neulasta shot he received on Monday will help him make some white blood cells. (p.s. He wants so much to be home to watch the Superbowl on Sunday!!)

He's playing with his marvel superheroes right now. He's turned the air mattress into a battle scene with all these little men. I believe Captain America is driving around in the Spiderman car taking out the villians. Thought you all could use a smile. It makes me smile to watch him play!

Wendy

Monday, January 28, 2008 6:52 PM CST

WE ARE AT HOME!! They decided that since Brandon had not ran a fever since Saturday night and since his cultures were all negative, he could go home. No need to sit in the hospital!

CHOP said he could have another neulasta shot to hopefully help crank out some white blood cells. They gave him the injection before we left the hospital today.

His counts are still low - he's restricted from going out in public. WBC 0.3 PLT 32 HGB 9.8

We go back to clinic on Thursday. I have a feeling he will need blood and platelets.

I'll update again after our visit to Brenner's on Thursday.

Wendy

Sunday, January 27, 2008 7:19 PM CST

Since my last update on Friday night, here's what's going on. Brandon received a red blood transfusion on Saturday and a platelet transfusion today. He has continued to spike fevers up to 102.5 last night. He is feeling better, however, which makes being in here much easier. His chest x-ray looked fine. No signs of pneumonia. His cold seems to be getting better, too. The blood cultures drawn Friday night are all negative. They re-drew them today since he spiked such a high fever last night.

We are waiting to hear from CHOP tomorrow to see what we can do about these low counts. If his cultures continue to be negative and his fever goes away, the doctor here said she would let us go home. Wouldn't that be wonderful!

Wendy

Friday, January 25, 2008 11:10 PM CST

I am typing this update from Brenner's Children's Hospital in an all too familiar room. Yes, he spiked a fever this evening. I expected it - it had been on the rise like it used to. Last night he hit 99.7 and was back down to 99.1 first thing this morning. Then he started the climb again. 99.5 by lunch and 100.5 around 5 pm. He finally reached the magic 101.4 around 10 pm. When we arrived, they accessed his port and drew blood cultures to check for infections. They just came in and did a chest x-ray since he is coughing. Antibiotics should be started shortly as a precaution since his counts are so low. His counts yesterday were actually worse than on Monday. WBC had dropped to 0.3 and he needed another platelet tansfusion (18). They held off on red blood even though his hemoglobin was down to 9.3. On top of all this, he has a cold. Stuffy nose and cough. With this much going on in his little body, no wonder we ended up over here!

Here's a good note to share. Brandon received his report card today and he made all A's!! What an accomplishment! Such a wonderful job! We're proud of him for working so hard at keeping up with school through all this and for making the A - Honor Roll!

It's late. Brandon is sleeping. He doesn't feel good - could be from the fever, could be from low blood counts. Either way, he's resting now and I hope he starts feeling better soon. Keep him in your prayers.

Good night,
Wendy

Wednesday, January 23, 2008 10:10 AM CST

Brandon went to school last Tuesday and Wednesday from 8:30 till 1:00. He enjoyed it so much! I went to work those two days - my first days back in the office since October when I left to take Brandon for his check up at CHOP. It was bittersweet - sitting there, remembering what it was like before and living in the moment of how it is now. I missed my co-workers. It was great to see them again.

We went to Brenner's on Thursday to check his counts. Boy did that turn out to be a trying day - to say the least. He was tired, so he rested on my lap while we waited for his results. When Diane came out and told me, I was shocked and saddened. His white count had dropped from 4.5 on Monday to an unsafe 0.8. He needed platelets and red blood. She then mentioned he may need to go back to CHOP for stem cells.....HOLD UP. This is where it started to get even more worrysome. Stem cells now would mean he wasn't eligible for another MIBG treatment in February. In our discussions with Dr. Mosse, they wanted to do all they could to get him to the next treatment. They feel strongly that he needs another one. So, in the brief moment that Diane rolled of the numbers and added the stem cell comment, I was at a loss for words. I asked about our mountain trip - as low WBC counts mean isolation. She said sure we could go. Then when she found out who all was going she said no. Then changed her mind again to ask Dr. McLean. He came in the room and began with "I hear you want to go camping." - Can you sense my frustration here?? Brandon was almost in tears thinking he couldn't go on his trip. I was almost in tears thinking of the counts and the thought - What more is going to be taken away from my child? He just wanted to go to the mountains! Anyway, Dr. McLean said if we felt comfortable taking him that they did too. Not what a distraught Mom wants to here. I need the Doctors input. Yes or No? and let's move on to understand this needing stem cells thing. Basically I never did get a solid, confident response on either issue, so I called CHOP. Dr. Mosse put it all to rest when she relayed that going on the trip was fine as long as he received his platelets and red blood. And as long as we knew that if Brandon ran a fever we would have to leave our trip and head to the hospital. She said they knew his white count would be compromised for awhile and it should not hold Brandon back from taking his trip. She said she would be in touch about the stem cells later. Yesterday I received a call from Dr. Mosse's NP, Jennifer, who reassured me that we were still on course with the original plan - to get him to the 2nd MIBG treatment. As long as he didn't need platelets more than 4 times a week, he was okay. If they started to get worried, they would let us know. Sigh of relief to say the least.

We did venture to Boone on Friday. Thanks to the winter weather we received on Wednesday Night/Thursday, we were blessed with snow in the mountains. Brandon's dream come true! Ashley and I took Brandon and two of his buddies, Chandler and Tyler to the cabin around lunch. The drive up the mountain was very interesting. Steep, slick and very narrow! The cabin was beautiful! We had a side yard that was perfect for sledding and snowboarding. We didn't have to leave the cabin for anything! We had it all right there! The boys had a blast Friday playing outside. They thought they were cool in the hot tub and shooting pool in the game room. We built a fire and waited for everyone else to arrive. We were all together about 8:30 that night. The house was full of people we love and kids running around playing. We were so happy to be there. On Saturday, we all spent time out in the snow. Keith and Brian discovered a side road that went straight up to the top of the mountain that noone had been on. So they started going to the top and sledding down it. Of course all the boys loved this and would come flying down the road on the sled. We saw lots of deer tracks in our yard. No signs of a bear - which would have been cool for Brandon. But we'll take the deer. Everyone headed home Sunday except Michael, me and Brandon and his friends. We built a fire and watched football while the kids took over the entire cabin. It was bitter cold on Sunday so we couldn't go outside to play. We had fun in the house though. We got the boys home on Monday around lunch and Brandon and I headed to Brenner's to get his counts. We were blessed that he didn't run fever and that he had a wonderful time over the weekend.

The counts on Monday weren't any better. In fact his WBC dropped to 0.6 and he needed platelets again. So we finally made it home around 6 pm. He is restricted again since his numbers are low. No going to school, no shopping, no restaurants.... I guess that's fine with him, he's catching up on his videogame playing.

We go back to Brenner's on Thursday. I'll update again to let you know if he's made a turn with his counts or not. I pray that his marrow starts pumping out those cells so he can get back to doing and enjoying things that he can't do with low counts.

I am working on loading all my pictures for 2007 - and the latest from our trip. There are so many! Wish me luck!

Wendy

Monday, January 14, 2008 9:17 PM CST

We've been busy around our house lately - busy in a good way.

Brandon goes to Brenner's twice a week, usually on Monday and Thursday to check his counts. He has needed a platelet transfusion at every visit. He's needed red blood once. These transfusions make for long days at the hospital. We've been leaving home for the hospital by 9:30 am and not getting home until after dark. Brandon did get the Neulasta shot to boost his white blood cells since they dropped so quickly. He had the injection last Monday. It lasts between 10 and 14 days. Its working - his wbc is hanging in there. So much so that we were able to go to Church Sunday and he's going to school tomorrow and Wedneday for part of the day!!

We've been working hard at getting him caught up on his school work. While in Philadelphia, he wasn't able to work on it at all. He's doing great at keeping up. Report cards go out this week. He's excited about going to school - for the friends part, not the working part! I think it will be great for him! Getting a break from me...hanging out with his buddies...

We went to the movies to see Alvin & The Chipmunks. That was a nice treat. We made it to the twins' birthday on Saturday. Brandon had so much fun playing at Ian & Rylan's party. He spent some time hanging out with his cousin Courtney. We've been to the two Church League basketball games. Brandon enjoys watching his dad play.

Jake went to the vet for a long overdue visit. It was a bad day for our beagle. He needed a booster vaccine, his nails trimmed, and ears cleaned. He has an ear infection, so he has ear drops and an antibiotic to take for a couple of weeks. Yep, I get to nurse the dog too!! Jake's feeling better now - he slept the whole afternoon after his vet visit on Friday.

We are looking forward to this weekend. We are headed to the mountains for a weekend getaway. Brandon wanted to go to the Rocky Mountains/Colorado. Well, that's a bit pricey and we can't be too far from home with him being dependent on transfusions. So, we are heading to the NC mountains. He had lots of requests for this trip - the cabin had to have a pool table, ping pong, hot tub, a loft for his bedroom.... Ashley, Brian, Robyn and Keith & the boys (Ian & Rylan), will join us on this trip, as will two of Brandon's friends. It should be a wonderful weekend. I hope it snows - not too much - just enough. It will be nice to take a vacation trip, not a medical trip!

Overall Brandon is doing great. No pain - thank the Lord. No fever to send him to the hospital - thank the Lord. He's maintaining his weight - although it has been a struggle. When his platelets are low, he bruises really easily and he's a boy, so he plays rough sometimes! When his hemoglobin is low, he tires easily and he looks pale. I am in awe of his strength - if he had hair you wouldn't know he was sick. He is such a trooper and a fighter.

I guess I have to put my night owl to bed now. He's used to staying up late and sleeping in. Tomorrow he's going to have to rise and shine early....off to school!

We return to Philadelphia February 10th for tests and another MIBG treatment.

Thank you to everyone who continues to remember our family - in your thoughts, donations and especially your prayers.

Wendy

Friday, January 4, 2008 7:47 PM CST

Brandon's MIBG scan in Philly post treatment showed what the doctors had expected. It was "bright" in the places they had hoped. As Dr. Mosse put it, let's hope this is doing a better job at round 2 than the chemo did. His latest urine tests were essentially normal as well. All good news - going in the right direction. The stem cells that were collected the week before Christmas came back with no sign of neuroblastoma. They send a sample to a lab in California to be tested. More good news. He has a good amount of clean stem cells for when he needs them.

We went to Brenner's yesterday to get counts. We were surprised to find they were already dropping. But we know that his bone marrow is fragile and tired after all it has been through. We go back on Monday. WBC 1.2 HGB 10.4 PLT 69 ANC 1008 - He will need a Neulasta shot when his ANC falls below 750. This is the injection that boosts his WBC to grow. We will get platelets and red blood as needed. It is important to get him through the 2nd round of this treatment before needing a stem cell rescue.

We have a tentative plan. Return to CHOP on February 10 for 3 days of tests - bone marrow aspirates and biopsy, CT scan, MIBG scan and repeat urines. As long as the tests show improvement, we will stay in Philly and be admitted for the 2nd MIBG treatment.

Hope everyone saw the wonderful article in the Enterprise about Brandon's school and the Brandon Koontz Day and breakfast they held. Lots of great pictures!

We are going to the movies tomorrow with friends to see Alvin & the Chipmunks. We've starting taking our Christmas decorations down. It is too cold to work on the outside lights!! Brandon worked hard today at his schoolwork. He wasn't able to work on any while in the hospital, so we've got a lot to catch up on.

He's playing Madden football on the Xbox with Michael. Which reminds me - on New Year's Eve when we arrived home, the first thing he did was run over to his Xbox 360 and tell it that he missed it. I had to laugh. Only Brandon....

Love,
Wendy

Monday, December 31, 2007 9:27 PM CST

We made it home around 6:30 pm today. Brandon had a quick MIBG scan at 8:30 and we left Philadelphia at 9:30.

So, no celebrating the new year on I-95...bummer.

We are very happy and very blessed to be welcoming 2008 from the comfort of our own home.

Happy New Year!

Sunday, December 30, 2007 12:53 AM CST

Brandon's out of the hospital!! They discharged him at lunch today. We just got in our hotel room. (Because of his treatment, the Ronald McDonald House won't let him stay there on the night after discharge.)

We have to be at the hopital tomorrow for the MIBG scan to make sure the treatment went where it should have.

Last night Michael and Brandon stayed up late to watch the Patriots game. Ashley & I did laundry last night just in case we were able to leave the hospital today.

Brandon is playing with his toys and I am going to take a shower!! Its amazing how the small things matter more than you know until they are taken away!

Hopefully we will be heading home tomorrow - yep we may be spending New Years on the side of I-95! We'll pull over at midnight and celebrate!!

Wendy

Thursday, December 27, 2007 7:56 PM

Foley fun & MIBG magic...

We were admitted yesterday afternoon around 4 pm to the same room we had in 2005. CHOP has one room dedicated to the MIBG treatments. Nothings changed except the view. A construction site across the street now fills the window. Brandon likes the light that shines in his room from the worksite - it serves as his nightlight.

This morning at 8 they took him to the OR to place the foley catheter. It is so uncomfortable that it brought him to tears when he returned to his room. We spent some time adjusting it and calming him, so he is more relaxed with it now. The MIBG arrived at 2 pm and they began the infusion through his port-a-cath. It was done at 4 pm. Very uneventful - he ate popcorn and watched an Animal Planet show about crocodiles. You can ask us anything you might want to know about crocs - we found out some very interesting facts. We've watched 3 hours of documentaries on crocodiles.....(do you sense my sarcasm? I can't take any more croc shows!) Right now, he is eating KFC for dinner. Michael is hanging out with him. I went to the cafeteria with Ashley and stopped by the computer to update.

When they finished the infusion, the radiation level they monitor was 52. The doctor estimated the number to be between 30 & 40 and is happy that is a little higher. It has to be below 15 to have the catheter removed and below 7 to be discharged from the hospital. Usually within the first 24 hours, that number is cut in half since you excrete the most during the first day. Dr. Mosse and Dr. Maris came by to see Brandon during the infusion.

We'll be hanging out in our plastic room checking the number each day. Before we head home, whatever day that may be, Brandon will have an MIBG scan. This one will be a little different than the ones we usually get. We want to see this one light up. When it lights up, it tells us that the MIBG went to the places it needed to. They compare this scan to the one done on the 14th. Hopefully it will match up - indicating the MIBG carried radiation to the existing neuroblastoma sites.

Let me get back to my brave little boy. Thank you for your prayers!

Love,
Wendy

Thursday, December 27, 2007 7:53 PM

Wednesday, December 26, 2007 11:02 AM

Back, already???

It's like we never left! We arrived in Philadelphia around 10 am this morning. Michael and Ashley came with Brandon and I on this trip. As most of you know, Michael doesn't like to fly, so we drove this time. It went really, really great. We left the house around 3 am - so it only took 7 hours. Guess early am is the best time to travel I-95!

Brandon will be admitted at 1:00 today. They will start him on IV fluids to prepare for treatment tomorrow. Early tomorrow morning he will have a catheter placed and then the MIBG will be ready after lunch for injection. The injection takes 2 hours. Remember from before, this is the treatment which makes him radioactive. His room is wrapped with plastic and there are lead shields around his bed. We will be able to be in the room with him, but we must wear a device to monitor our levels. We can't shower, use the bathroom or eat in his room. He will be in the hospital until his radiation level is low enough to be discharged. The radiation is excreted through his body fluids. They are expecting around 5 days in the hospital.

Christmas was wonderful. It was a blessing to be at home and to be together. The four days at home went by faster than we all imagined. We were able to go to worship on Sunday. I needed that Church visit more than you know. It was so great to see everyone.

I just want to thank everyone again for all the generous things you are doing and have done for our family. Your kind deeds take away part of the worry for us so we can focus on Brandon.

Please say extra prayers that this treatment will heal Brandon's body from neuroblastoma and that there won't be side effects. Pray for the doctors and nurses as they care for him. May God's own hand lead and direct them.

Love,
Wendy

Thursday, December 20, 2007 8:03 PM CST

Six million stem cells collected!!!

Wow, its been a tough week and a half. Brandon's first day of collection yielded around 1 million. We were all worried that we would not get enough - the goal was set at between 5 & 7 million. We spent a lot of time discussing things on Tuesday and agreed that as long as we collected 2 million total we could go forward with the MIBG treatment. Yesterday was Day 2 of harvesting cells, he ended up getting close to 2 million.

Lots of talk this morning that we may not have more to get - his marrow is tired from all the treatment and we may have collected all we could get.

Well, Brandon showed them - they called around 5 pm today to say they collected a total of six million - so they collected around 3 million today! Today was his best collection of them all!!! He made the goal! Something we thought Tuesday we may not reach!!!

So tomorrow his temporary line comes out of his neck and we can fly home!! We spent tonight packing everything up.

We're going home for Christmas!

Wendy

Monday, December 17, 2007

Additional update:

Brandon's aphresis lines have been placed. He is resting comfortably at the RMH. We met with Dr. Mosse around 4:00. She went more in depth with the results and the plan. Of course they wanted the chemo to do more but she feels that the chemo put the brakes on things. His urine tests were normal this time. This is good news. Dr. Mosse feels the chemo may have improved his bone marrow since his counts are recovering quite well on their own. She feels that if the marrow was packed with neuroblastoma it couldn't bounce back as well. She feels the pain being gone is also a good sign - possibly the chemo did help with the tumor on the spine. She is cautiously optimistic that this plan of 2 MIBG treatments could put him back in remission or very close. Then he would start some medications by mouth daily. She knows what her choice would be today but she wants to wait because there are a few new drugs coming down the pipeline that will be available in the next few months. The collection of stem cells will be an important part of this. Tomorrow we start harvesting cells at 9:00 am.

Saturday, December 15, 2007

Still hoping for our miracle....

The MIBG scan showed that the two courses of chemo held the disease where it was. The scan wasn't better nor was it worse than the one in October. Not the results the doctors had hoped for, but his disease is stable. This test confirms that Brandon's disease is resistant to standard chemotherapy and just reminds us how nasty and sneaky neuroblastoma can be. With the back and leg pain being gone, we had hoped the Modified ICE chemo had done some work at killing off the NB cells. It did stop the cells from splitting and spreading.

We are still moving forward with the plan. He will have surgery on Monday to place the aphresis lines for stem cell collection which starts on Tuesday. I believe we are looking to collect 5 million cells. We started the injections today to boost his body's production of cells. One injection at 7 am and one at 7 pm each day until we have collected enough. We will head home when enough stem cells are collected. Hopefully by Friday the 21st. Then we are scheduled to return on the 26th for a high dose MIBG treatment. As long as his bone marrow can recover from the MIBG treatment on the 26th, we will do another one about 6 weeks or 8 weeks later.

It's very cold here. They were calling for snow/ice on Thursday but we only got rain and they were calling for snow tomorrow, but now they've changed it to rain.

He's feeling great, playing alot, being sassy and eating. Other than that bald head of his, you wouldn't know what was going on here. No one could imagine the battle that was raging inside his little body. He is the strongest person I know. He makes life worth living. His smile and his laugh make my heart flutter. I love him so much.

Thank you for your prayers. We are still in need of them and still believing in the Lord and all He can and will do.

Wendy

Thursday, December 13, 2007 9:39 PM CST

This will be real quick as we have been very busy and it is late tonight. This is the first chance I've had to get on the computer since arriving in Philly on Wednesday.

We are safe and sound. Brandon and Courtney are playing.

Michael & my Mom are coming up tomorrow so I should have the laptop and can type much more. There is alot to share since my last post.

Just know that Brandon is well. His MIBG scan is tomorrow at 8 am, so we need lots of prayers tonight and in the morning. What a miracle it would be to have a clear scan!

Just believe...

Love,
Wendy

Thursday, November 29, 2007 8:05 PM CST

We were home at 4:30 on Tuesday afternoon! Brandon tolerated the chemo very well. Tuesday night, he and Michael went and picked out our Christmas tree. We spent the evening decorating the tree and listening to Christmas music. Wednesday was very busy - I tried to get the house in order and Brandon had to catch up on his video games. He had a visit from a friend and they played for a little while. So many of his friends are calling to come visit - it is so heartwarming!

Today we had to return to clinic at Brenners. Let me just say the day didn't turn out like I had hoped. We arrived around 9:45 and left around 1:30. UGH. His counts have already started to drop. WBC 1.5 HGB 10.0 PLT 86 - I had hoped he could be in the Christmas Parade in Mocksville with our Church and I had hoped he could go to Michael's company Christmas Party on Saturday, but they said no. WBC too low for Christmas Party and PLT too low for parade.

We started the daily injections today to boost his white blood cells for his stem cell harvest at CHOP. I will give him the shot once a day through December 8th.

Our travel arrangements are made for the first visit to CHOP - December 12 through December 21. Thank you to all the kind and generous people who helped with the airline tickets.

Today is also my birthday - 33 years old today!

Message from Brandon:

happy birthday!!!!! i love you

I think I'll end on that. I have a smile on my face thanks to my sweet boy!

Keep praying,
Wendy

****************BENEFIT INFORMATION********************

SEAFOOD DINNER
Monday, December 3
5 pm to 8 pm
Pier 601 Seafood Restaurant, Mocksville
Dinner proceeds to our family

COMMUNITY BREAKFAST
Saturday, December 8
6 am to 10:30 am
Cooleemee Elementary School, Cooleemee
Breakfast proceeds to our family

******************************************************

THANK YOU to everyone who is working so hard to help us! THANK YOU to everyone who is attending the benefits and making donations. We appreciate all your hard work, your time and your support. Although we can't always make it out to the events due to Brandon's counts, we just want you to know how grateful we are. God bless you all!

Sunday, November 25, 2007 5:26 PM CST

Only two more days to go...

Brandon tries to deal with being in the hospital in his own way. He's said a few times today "Is it Wednesday?" He knows what day it is, but he also knows that he will be home on Wednesday, so I think he's just hoping its Wednesday already. Our family is taking turns coming over to stay. I think this helps him to. Michael stayed Friday and will stay Monday. Nana was here last night and Ashley is here tonight. Also, one of his best buddies, Chandler, came to the hospital this afternoon to play.

No sickness from this chemo yet. I pray that he continues to be free of nausea and that this nasty medicine beats back the NB beast.

We haven't quite figured this out, but Brandon has an appetite like you wouldn't believe. He is eating, eating, eating. It is very much different from before. Not sure if he is just going through a growth spurt or if this chemo has made him feel that much better by beating back the disease. Anyway his weight is up to 64 1/2 lbs.

We should be checking out late on Tuesday. A lot of things are up in the air - lots of things going on that he wants to be a part of, but we just don't know about his counts, fever etc.

His school is holding a community breakfast on Saturday, December 8 at the school cafeteria. I believe there are flyers out. My dad saw one at the corner store. On Friday, December 7 - the day before the breakfast, the school will honor Brandon with a special Brandon Koontz Day. The students are encouraged to wear anything baseball to honor Brandon. We all know he loves baseball and the NY Yankees. These are the only details I currently have. When I get more, I will post. He really wants to go to school at some point that day....but as I said we will have to wait and see.

Our Preacher came by the hospital today and was talking about the float for the Mocksville Christmas Parade. I haven't talked to Brandon about it - I know he would love to be on that float with his friends from Church, but again, I don't know yet. And I don't want to disappoint him if he can't.

I want to give praise to God for these wonderful events taking place for Brandon. He is showing His love through the works of so many people. I know this is a testament to Him and all that He can provide. Trust in the Lord with all your heart!

Wendy

Friday, November 23, 2007 8:32 PM CST

Day one of this round - done.

We checked in at Brenners around 9 am this morning. His chemo is finished for today. Just four more days to go... He is feeling well. Right now he's doing one of his favorite things - playing a videogame! I hope he tolerates this round as well as the last. Most importantly I pray that this combo is doing a great job at killing the NB cells!

We had a low-key Thanksgiving at our house. Lots of food spent with a few family members. We didn't get to make the rounds to see everyone like we wanted to. Brandon wanted to do his outside Christmas decorations while he was feeling good, so we spent the evening getting the light show ready in our front yard. He is very happy about them. When we finished putting everything out, Michael turned them all off. I drove Brandon up the road and Michael turned them on so we could drive by the house and see them. Brandon smiled and laughed. It was fun.

I just can't believe all the wonderful cards filling our mailbox. We spent some time last night reading them and feeling very loved. And the messages posted on this website are so heartwarming!

Keep praying,
Wendy

Wednesday, November 21, 2007 6:46 AM CST

It was three years ago today that we first entered this battle. Brandon had been having hip pain and we had spent almost six weeks back and forth to the pediatrician, to different specialists trying to figure out what was wrong. We had an appointment at the pediatrician today three years ago. Brandon had started having tummy aches. We left the doctor's office still uncertain of what this was, but closer to a diagnosis of Juvenile Rheumatoid Arthritis. I remember being upset in the car, thinking of my 5 year old having to live with this JRA. By the time we made it home, there was a message on the answering machine from the doctor asking if we could please turn around and go back to Winston to do a CT scan. Of course we did. It was a long afternoon. Around 8 pm, they called us into the consultation room to say they saw "a little something" on the scan. (oh, that little something turned out to be a beast...) His pediatrician called and directed us to Brenner's that very night. It was dark, it was cold and we had no idea about the world we were about to enter. As we were walking into the 9th floor inpatient unit, I remember reading "Hematology/Oncology." I knew what Oncology meant, but I tried to ignore it. On Thanksgiving morning of 2004, Dr. Wofford and Brandon's pediatrician came to us and told us that they believed his diagnosis was Neuroblastoma. What in the world was Neuroblastoma? We know all too well now. We were devastated. But we came together as a family, put our faith in the Lord and started the fight.

Here we are three years later, starting the fight all over again.

We have a tentative plan:

Admit at Brenner's on 11/23 for 2nd course of chemo

Go to Philadelphia 12/11
Meet with Doctors 12/12
MIBG Injection for scan 12/13
MIBG Scan 12/14
Stay in Philly 12/15 - 12/16
Surgery to place temporary lines 12/17
Stem Cell Harvest 12/18 - 12/20

Go to Philadelphia on 12/26 for admission to begin MIBG Treatment on 12/27 (as long as MIBG scan on 12/14 shows improvement) ---- This MIBG treatment is similar to the one we did in 2005 - the experimental one where he is in the isolated room because of radiation. Only this time the dosage is different and he will not have the chemotherapy conditioning and stem cell transplant afterwards.

Whoo - that's a tough schedule! Especially around Christmas.

Keep praying hard for Brandon. Pray that this plan is the one that will beat this disease back into remission. Pray for strength for Brandon's body and knowledge for his doctors. May God lead Brandon through this as He has done before.

***Brandon's school is planning a special event on December 7th & 8th - Be on the lookout for more information!***

Hope everyone has a wonderful Thanksgiving. We are truly thankful for each one of you who cares so much about us.

Love, Wendy

Friday, November 16, 2007 7:53 AM CST

As I mentioned before Brandon is all about Christmas! He spent some time outside decorating at Nana & Papaw's this week. He also decorated their tree already! I wanted to put out a few Thanksgiving things at our house, but he didn't want to help at all.

On Tuesday his hair started to show signs of coming out. By Wednesday he would run his fingers through it and show me big clumps of hair. So we had an impromtu Hair Cutting Party. It was amazing how it all came together. Brandon was talking to Michael and I about how it was bothering him (by this point - 6:30 pm on Wednesday he looked like an old man with a huge bald spot in front.) Robyn called to check on us. I told her about our conversation. She had just been talking to Melissa (our friend and hairdresser.) Melissa was leaving the shop. I put in a call to Melissa and of course she was on her way to our house. In the meantime, Brandon's Uncle Keith and our good friend Brian were headed our way for the hair cut too. We had a mini-barber shop in our kitchen. Melissa shaved Brandon first. Then Brandon shaved his Uncle Keith. I thought the twins would be a little upset about their Dad's new look, but Ian and Rylan just kept on playing. Brandon turned the clippers on his Dad next. In the middle of Michael's shave, Brandon received an important phone call from his friend Madison. He abandoned Dad's haircut to talk to Ms. Riddle. After his phone call, he started on Brian's hair. I took lots of pictures. Carolina was playing basketball that night, so the boys stayed to watch the game. Ashley and I picked up dinner. When we got home, two more of Brandon's buddies were here ready for their trim. Adam and Pat let Brandon shave their heads too! It turned out to be quite a fun night. Brandon was happy to see everyone and it was very heartwarming to see so many friends want to make this easy for him.

Yesterday we went to clinic for counts. WBC 3.5 HGB 13 PLT 24 - they decided to wait on the platelets. If he has any nosebleeds or bruising, we can go to the hospital to get a platelet transfusion. Just wanted to see if his body would kick in and make them first. We don't go back to clinic until Monday. He felt great yesterday. He's eating well, playing....but he does get tired easily. After we left clinic, we stopped by my work. It was bittersweet. I miss my co-workers, my friends. We took some Krispy Kreme doughnuts by Michael's work. Brandon's teacher came by for school time. His third grade teacher, Mrs. Hendrix, has so kindly offered to do his homebound services.

I can't say enough to all of you for your support. Please know how much it means to us. Brandon is old enough now that the things you do make him feel very special. He has grown up and he understands so much more.

Keep those prayers going up. Keep believing in miracles. Keep trusting in the Lord.

Have a great weekend,
Wendy

Tuesday, November 13, 2007 2:52 PM CST

Quick update - we are home!!

The docs let us go home on a couple of conditions....watch for more fever, he got a dose of antibiotics that would last 24 hrs, he received a blood transfusion and we return to clinic on Thursday.

Brandon is feeling good.

We have a lot to be thankful for today!

Wendy

Sunday, November 11, 2007 9:03 PM CST

Brandon is feeling better. He hasn't ran a fever since Friday and so far his blood cultures are negative for infection. He did receive a platelet transfusion today. They made it down to 15 and he had two small nosebleeds yesterday, so they went ahead and gave them to him this morning. Dr. Wofford gave us a four hour pass to leave the hospital between his antibiotics. He received a dose at 3:30 and then we left. Our nurse said we could have a little longer, as long as we were back by 9:00 for his next dose of medicine. Of course, we took the opportunity to go HOME! Ahhh, home. Just walking in the front door can put a smile on your face! Not to mention hugs from Michael and an overly excited beagle who misses Brandon so much!

Brandon wanted to decorate a Christmas tree...I know?? But he started talking about Christmas yesterday afternoon and it carried over. So when he got home, we pulled out a small artificial tree and all the trimmings. He decorated the tree. It is sitting in our living room right now. He played videogames. I took a shower at home which was very nice. Then I cooked dinner for us. We hated it when 8:00 rolled around. I packed up some more clothes and some snacks and we headed out. On the way back, Ashley found Christmas music on the radio. We sang the whole way to Winston - all three of us together. We had to make a quick stop by Krispy Kreme - the HOT & NOW sign was on. Brandon was excited!

Brandon's appetite is much better when we are out of the hospital. At home tonight he ate a snack size bag of popcorn, macaroni & cheese, a push up and then two doughnuts from Krispy Kreme. Such a relief to see him eat more.

The best part was hearing him laugh and sing. He has been in the best mood since we were able to go home for a little while.

The doctor mentioned today that we have three options and they depend on Brandon's cultures, Brandon's counts and overall how he feels. Either we go home soon with antibiotics, go home soon without antibiotics or stay inpatient until his counts recover. Maybe tomorrow they can shed more light on this.

I just want to tell you all again how much your support means. So many wonderful things are taking place...we are truly blessed to have such amazing friends and family. Even people we don't know are touched by Brandon. Keep sending up prayers.

I'll share a personal story with you. A few weeks ago I was driving to work early in the morning as always. God spoke to me and told me He loved me. He kept telling me over and over again - so much that it made me cry. I thought I knew why He was telling me this, but I truly had no idea what was coming in my life. About a week after this, we went to Philadelphia and found out about Brandon's relapse. I struggled with anger and sadness, so many emotions during that time. Now looking back, now that I am seeing more clearly, I know what He was doing. He was trying to prepare me. He knew that the time was coming where I would be angry with Him and be sad. But He wanted me to know how much He loved me. And that He is with me. I just want to give God the glory for what He is doing in my life and with my own heart. I do not understand what His plan is here, but I know that I trust in Him and that above all He loves me just as He loves you and my little Brandon.

Love,
Wendy

Friday, November 9, 2007 5:06 PM CST

Guess I spoke too soon....

Brandon woke up this morning very tired and with some back pain. We headed to Brenner's to get counts and find out what he could take for pain. I couldn't give him the Tylenol with codeine since it would hide a fever. At clinic, he checked in with a temperature of 99.2. His counts showed WBC 0.5 HGB 8.8 PLT 35. They decided to give him red blood and wait on platelets till Monday. In the meantime he was feeling so tired and cold that they checked his temp again and he was up to 99.9. We made it to a room to get the blood transfusion and his temp was up to 101.1. The magic number is 101. So he was admitted, they drew blood cultures and began antibiotics. We arrived at 9:30 this morning and it is now 6:15 and he is just getting his blood. They had to get the fever down before they could begin the transfusion.

Its hard to believe we are back in here. We just left on Sunday. I was hoping he would make it till next week, but his bone marrow is tired. His little body has been through so much. That is the understatement of the year...

He's sleeping now. They pre-med him with benadryl, hydrocortizone and tylenol before blood products. The benadryl really knocks him out.

Please be understanding that when he is in the hospital for fever/low counts we have to be EXTRA careful about germs and such. We ask that you call. We are limiting visitors in the best interest of Brandon right now. It's just like we did before with his treatment. Once his counts recover, we can have more contact.

Just to remind you - we are in the hospital now until his counts start to recover and he is without fever for at least three days. We also have to wait on the cultures.

Hope everyone has a good time at the breakfast in the morning. I know the food will be delicious. Thank you to everyone who is involved!

From Brenner's with Love.....Wendy

Thursday, November 8, 2007 8:18 PM CST

Let me update you all with a smile on my face. Brandon had a WONDERFUL day today. He was allowed to go to school for a couple of hours. It was such a blessing - for both of us. I think I enjoyed it as much as he did. He wanted me to stay at the school, but I couldn't hang out in his classroom. There he goes being independent again.

I was able to visit with Mrs. Mary from Church who is working at Brandon's school. She shared the Prayer Circles they did at Church with the kids. I loved it!

Brandon hung out with friends and played around on the computer some. (Of course he didn't do too much real school work!) The kids were just as happy to see him as he was to be there.

When we got home, I tried to do some of the make up school work with him, but he had his own idea. He informed me that since he "went" to school today he didn't need to do any school work at home. He is so funny!

Tomorrow we go to Brenners for a checkup and to get counts. He seems to be okay. I haven't seen any bruising so I think platelets are fine. He is a little pale, but had plenty of energy for a busy day today so I'm not sure about red blood. Guess we'll know more tomorrow if he needs any transfusions.

This Saturday our Church is having a breakfast to benefit Brandon. The details were printed in the Enterprise. It is from 6 am to 10 am at Center United Methodist Church. Thanks to our Church family for working so quickly to help.

I cannot thank everyone enough for all the kind things that are taking place for Brandon and for our family. God Bless you all!

Keep praying,
Wendy

Tuesday, November 6, 2007 6:37 AM CST

Sorry I didn't post the past few days. We are at home. Brandon was discharged Sunday afternoon.

It was so wonderful to walk into our house. Brandon and I had only been home one night in two weeks. The house was clean thanks to Michael. We watched some football, Michael grilled some dinner, and Brandon seemed happier. His cousin Courtney came over and he left the couch and played in his room for a couple of hours.

Michael took an extra day off work yesterday. We took Brandon to Petsmart - you all know how much Brandon loves animals. Brandon received a gift of money from some very special friends - money just for him. He used it at Petsmart to buy Jake the beagle a new sweater - he looks like a college student in his sweater. And he bought a new fish tank, decorations and new fish. He now has 8 fish. He certainly had fun shopping.

His appetite has fallen off. He's trying though. I had forgotten how hard this battle was - the battle to get him to eat to maintain his weight. He is tired, a little slower moving than the Brandon we know. Thank the Lord the pain is gone - he hasn't taken any pain meds since Saturday.

Today we go to clinic to check counts - to see if he will need any blood products and to get a Neulasta shot. The Neulasta is to boost his body's production of white blood cells. We are now watching for fever - being very careful of germs and sickness.

Thank you to everyone who posts messages. I can't tell you enough how much it means. All the phone calls - please be patient with me, I plan on returning calls, it just takes a little bit. Your prayers are more valuable than you know.

Michael is returning to work today. I am sure it is going to be hard for him to be away from Brandon today. But, he is providing for us a means of income to keep this household running. I am returning to "work" also. Not my job where I made money to pay bills, but my job that is most important - being Mom to Brandon. My place is to be with Brandon to take care of all his needs and to keep my family going strong on the homefront. I am thankful to Michael and to the Lord that I can be here with Brandon. We know God will take care of us. He did before and He won't leave us now. Thank you for your gifts - they help to keep us going in a time like this.

I am going to wake up the handsome little man sleeping in my bed. He's so beautiful. I just love him with all my heart and soul.

Wendy

Our Church has set up a fund where you can help out.

Center United Methodist Church
Attn: Brandon Koontz Fund
C/O Linda Owings
728 Wilkesboro Street
Mocksville, NC 27028

Saturday, November 3, 2007 9:59 PM CDT

It has been tough at the hospital today. Brandon starting having back pain on Friday night. The tylenol with codeine wasn't enough to control his pain. He had to get morphine this morning. This caused him to sleep all day. He has thrown up twice and hasn't eaten anything.

Please pray for a better night.

Wendy

Thursday, November 1, 2007 3:15 PM CDT

Here's the not so condensed version of my update.

I really can't put into words how bad this hurts. The levels of emotions are unimaginable. As I said during his previous treatments, I know without a doubt that God exists and that He is with us. Even though I have been struggling with my feelings, I know that He is carrying us right now. There is no way on this earth that we could have survived this past week without Him. When we needed to hear words of encouragement, they came by way of friends and family. When we needed to cry, someone was there. When we needed money to make it through, it came. When we needed love, we were loved. All the things each of you are doing for us - big, small, no matter what it is, we know that it is God working through you and blessing you and us at the same time.

Brandon is doing great today. No leg pain at all. No fever. He hasn't been sick from the chemo yet either. In fact, he ate a slice of cheese pizza and 4 breadsticks for lunch. I am looking at him from across this hospital room. He's lying in bed, legs crossed, listening to his i-pod and playing a playstation game. He is a trooper - making the best out of this situation. He's had his moments though. He's been angry and upset about being here. This time it is different for him. He's no longer the little boy who depends on Mom for everything. He's grown over the past three years. He's become more independent and loves his friends. We are so thankful for all the friends who have come to visit. It warms my heart and gives me some comfort to see him pep up when he has friends to play with. Please know that we appreciate you sharing your children with us. I think about how hard it must be to explain to your children what is going on. Brandon is blessed to have such caring friends.

We know more about our "plan." We will finish this chemo on Sunday. Head home and he gets three weeks off to let his body recover. Then he will have another course of this Modified ICE chemo. He will be tested to see his response. Hopefully we can head to CHOP to harvest stem cells. Then he would undergo an MIBG treatment at CHOP. As I mentioned this is the 8 week plan we currently have. We have to take this day by day.

I know this disease is complicated and hard for all of us to understand. You can log on to www.nant.org or www.curesearch.org to find out more about Neuroblastoma.

From the bottom of our hearts, thank you for your prayers.

Love,
Wendy

Wednesday, October 31, 2007 5:03 PM CDT

Real quick update - I will post more later. We did get home Tuesday morning at 2 am. Mondays surgery went fine - Brandon's port was placed and he is doing well. The bone marrow results are positive for NB.

We are now at Brenners. He is finishing up the first day of chemo.

Keep praying. Thank you for all the messages, calls and prayers.

I hate this disease.

Love,
Wendy

Monday, October 29, 2007

We are waiting on our little man. He is in surgery to have his port placed and to have bone marrow biopsies done. This weekend was the longest weekend I think I've ever been through. It started raining on Wednesday when we got the news and didn't stop until Saturday afternoon. I like to think those were tears too. Perhaps the sky or heaven was crying with us. But, the sun came out and it was a beautiful day yesterday (although very cold.) I think there is a message in this little story. The sun will shine again.

Brandon started experiencing pain. It started with his left leg on Saturday. He asked Michael to carry him around. Yesterday it switched to his right leg. To prepare for surgery, he could not eat or drink after 11 last night, so I was very worried. I had been giving him Tylenol to take the edge off the pain. It was working. But I knew he couldn't have a dose after 11....which meant the possibility of pain with no help. And sure enough we didn't get much sleep from 2 till 6. He took 3 hot baths. By 5 am, I had to call the hospital to work out a plan. The oncologist on call said we could bring him to clinic at 8:30, place an IV and start morphine till his surgery at 10:30. He fell asleep in my arms and we all three got a few hours of sleep. We decided at 8 not to wake him since he was resting. He woke up and being the trooper he is, he wanted to take a shower (standing?) He wanted to walk himself to the bathroom and undress. He did it all - such a strong boy. We made it to the hospital at 10 for his surgery. We talked about the pain. He was glad we didn't come to the clinic at 8:30 and get an iv for meds. His pain went from an 8 during the night/early morning to a 3 right before surgery. (Scale 1 - 10 , 10 worst)

Thank you all for the messages, phone calls and mostly the prayers. We look forward to reading the posts on the website. Your words are encouraging and it helps during a time like this to feel all your love. The prayers and bible verses help to keep us where we need to be. It is so hard. So many of you love Brandon too.

I hope we will be leaving Philly this afternoon and heading home. We want to spend tomorrow at home letting Brandon enjoy his favorite things before we are admitted to Brenner's on Wednesday.

With hope,
Wendy

Friday, October 26, 2007

Just wanted to update. I know so many of you are checking in on us. Most importantly, Brandon is well. Brandon is Brandon. Right now he is eating Papa John's pizza, playing Mario soccer on the nintendo. Looking at him, you would have no idea what is going on in his little body. There were no signs of this. He had a little Halloween party on Friday before we came up - he played baseball on Sunday before we left. The doctors are shocked.

The disease is so vicious - it hides, it stays quiet and then rears its ugly head. It is back with a vengeance. NB showed up in his skull, up and down his spine, hips, and legs. The spine shows a tumor mass. The mass has caused two of his vertabrae to be fractured. Yes, fractured vertabrae. And you would never know it.

Here's the plan. We are staying in Philadelphia this weekend. He has surgery scheduled for Monday at CHOP. They will place another port-a-cath and perform the bone marrow biopsies. We will head home on Tuesday. He will be admitted at Brenners on Wednesday to start two courses of chemotherapy. This chemo includes one medicine he had before but one he has never seen. It is known as Modified ICE. He will be inpatient for 5 days to receive the treatment. He will have 3 weeks off and be admitted for a second course. We will then have to collect stem cells. These will be crucial in the next steps. Having the stem cells allows Brandon to be eligible for other treatments/therapies. We will be returning to CHOP to discuss the next step. The treatments/therapies available at that point would not be available at our home hospital - we will have to come to Philadelphia for those.

We are dealing with so many emotions. We draw so much strength from Brandon. He is a warrior - the strongest person I know. After he heard the news, he cried then took a deep breath and told me "Mom, it's time for Round 2 - We knocked him down in Round 1 but he got back up. It's time for Round 2."

Please keep him in your prayers. Us, too. Ask that God gives the doctors the guidance they need to take care of our baby. We have struggled over the past few days but we have turned this over to Our Lord and know that He will carry us through this as He did before. We do not understand His plan. But we give all the glory to Him for the mercy He has shown and for the wonders He has done for Brandon. We must continue to trust in Him.

Love to you all,
Wendy

Also, several have asked - Our Church has set up a fund where you can help out.

Center United Methodist Church
Attn: Brandon Koontz Fund
C/O Linda Owings
728 Wilkesboro Street
Mocksville, NC 27028

Wednesday, October 24, 2007

I don't know where to begin...

It is with tears streaming down my face that I write to tell our friends and family - that Brandon's tests show the disease is back.

Michael and Ashley are on their way to Philadelphia to be with us. We spent the entire day at the hospital. We meet again with the doctors tomorrow.

Please keep us in your prayers.

Wendy

Monday, October 22, 2007 4:45 PM CDT

Safe & Sound...

We arrived in Philly and have checked into the Philadelphia Ronald McDonald House. We had a great trip up. Brandon is currently on my cell phone with one of his friends, sitting in front of a computer surfing the web....and he's only 8 years old! My how he is growing - in so many ways!

Tomorrow we have to be at the hospital for IV placement, blood draws, urine test and MIBG injection. Then we go back to the hospital on Wednesday for his MIBG scan and meet with the doctors afterwards. I will update with news as soon as I can.

Please pray that he will continue to be in remission! Thank God for all the wonderful blessings he has already given us!

UPDATE on my Uncle Gary (Mom's Brother)

They were able to remove the heart pump today. The blood pressure is still an issue - they are trying to get him off of some of the medicines, but it is a slow process. His heart is beating on its own. He is still on the ventilator. They are working on clearing the fluid from his lungs. Still keeping him sedated. He has a long way to go - but we continue to trust in the Lord. And know that He is with Gary. We are celebrating how far he has come in a week!

Thanks for checking in on us!
Wendy

Tuesday, October 9, 2007

School, baseball, friends...

Brandon has been busy enjoying all the wonderful things an 8-year old loves. He's playing Little League baseball every Sunday afternoon, practices are Monday and Wednesday. He looks so handsome when he gets all his baseball gear on - looks like a little man. He seems to have a friend over the house at least twice a week and is constantly on the phone with his buddies. It makes me smile to see him growing up. He received his mid-term report and he has all A's! Third grade is the year they go to the number/letter grading system (A = 93-100.) So his tests, homework papers and work papers all have actual grades on them, not just check marks. He has a reading project due every month. He has already decorated his treehouse for Halloween. We spent this past Saturday pulling out the storage boxes. Alot of what we found brings back memories of CHOP and Philadelphia two years ago. He was in the hospital with his stem cell transplant. Michael and I ventured from the hospital one day and found a Halloween store, so we bought lots of decorations and turned his hopital room into a cool place.

I still can't believe it has been two years. We go back to CHOP on the 22nd for his 4-month visit including MIBG scan. Brandon and I will be going, along with his Nana (my Mom.) Please pray that this visit will be safe and tests will continue to show he is free of NB.

I just want to ask everyone to remember James Runde's parents, Jim and Dawn. My Mom and I went to the visitation on the 21st of September. I realized even more while standing there just how special these people are to me. Even though our families live an hour apart and our journeys have been different, we still have this bond that I can't explain. When I hugged James' Mom, I knew we were connected at the heart. Something only Moms in this battle can truly understand. James touched our lives in so many ways. The Runde's are such wonderful people - devoted to the Lord in such a way that I learn from them and I think everyone would benefit spiritually from their Faith and love. (www.caringbridge.org/visit/jamesrunde)

So many children to pray for in our NB family - please remember these fighters as they face some tough times Elizabeth Westberry, Katie Krize, Brandon Loose and Austin Melgar.

Thanks for checking in on Brandon. Your love and support mean so much to us.

Wendy

Tuesday, September 18, 2007

Heaven has a new little angel....Brandon's friend from Brenners, James Runde, passed away peacefully last night. Please remember his family in your prayers.

www.caringbridge.org/visit/jamesrunde

Thursday, September 13, 2007

Keeping busy around here! We enjoyed our first visit to NYC. It was quite the experience. We were only there for a few days, so we tried to hit some of the bigger things that were near our hotel. We stayed in Midtown Manhattan and were able to walk to Macy's, the Empire State Building and Times Square. We took a taxi to 5th Ave Shopping including FAO (toy store), Central Park and Rockefeller Plaza. We rode the subway from 34th Street to 161st Street in the Bronx for the Yankees game. So much to do and so much to see....it was like a whirlwind! I will post pictures soon - I found the hookup for the camera to the computer. I know, I have lots of pictures to upload!

Third grade is just that - third grade. Brandon is an old pro at school now. He misses sleeping in - hates having to get up and go to school five days a week. He would much rather stay home and play videogames.

Tackle football wasn't Brandon's thing. Maybe he will try again next year (I'm not complaining.) He is now playing Fall Little League Baseball. He's already had three practices and his first game is this coming Sunday afternoon.

He had an appointment at the pediatrician for follow-up on the cough/allergies and another round of re-immunizations. He is finished with his immunizations all except for the "live" vaccines. He must wait longer for those. As far as the cough goes, he has some asthma in the smaller airways. The bronchioles are spasming and hyperactive, so they started him on Singulair. He took this as a toddler. Hopefully the cough will now be totally eliminated. He is up to 63 pounds!

Can you believe that September 21st is the 2 year anniversary of his transplant??? 2 years in remission??? Jake the Beagle turns 2 years old??? Today, I went back on the journal history to read what was going on at this same time 2 years ago. I plan to do a little something special for Brandon that day to celebrate!

We are scheduled to return to Children's Hospital of Philadlephia for his 4-month checkup on October 22nd.

Please send up prayers for our little buddy, James Runde, and his parents Jim and Dawn. He is under hospice care now and they are taking things one day at a time and sharing moments as a family.

Love,
Wendy

Tuesday, August 28, 2007

Things are great at the Koontz house. We have so many things to be thankful for. Brandon started 3rd grade on Monday!! 3rd Grade??!!?? He tried tackle football, but changed his mind. He is going to play fall baseball. We had a spectacular weekend getaway to Myrtle Beach courtesy of Andy's Special Friends Foundation. I will post pictures soon. We leave for NYC tomorrow morning. Taking Brandon to a Yankees game!

Just wanted to do a quick update to let everyone how well we are doing. Brandon has had a checkup at Brenner's since my last post and we made an emergency trip to Brenner's for a lump on his head which turned out to be nothing. His weight is up to 62 lbs!! Finally reached the elusive 60 and exceeded it! Tests were done - hearing, pulmonary, thyroid. Hearing remains the same as last year - definitely damages to hearing, but at this time we don't have to get hearing aids. Thyroid was normal. I haven't received the pulmonary results yet. We have heard from CHOP and we will be returning October 22 for his 4-month checkup including MIBG scan.

Did I mention our family has grown again? Brandon has new pets - a hamster named Timmy and a new goldfish named Megan. Seems like all we do around the house is clean animal homes and feed pets....but oh how he loves animals!

Please remember James Runde and his family in your prayers. (www.jamesrunde.com) Another beautiful little girl from Brenner's, Lillie Boyte, earned her angel wings today, so remember her family as well. (www.caringbridge.org/visit/lillieboyte) My heart aches for these families as they go through these difficult times.

Love,
Wendy

Tuesday, July 10, 2007

What a wonderful summer we are having!!

The trip to Philadelphia was great - all the way around. Brandon's tests were normal. Praise God!! The entire team at CHOP was so happy along with us! They spent about an hour in clinic just talking to Brandon and spending quality time with us. We have such a special relationship with them. We go back in October for the next set of tests. They will decide then if we change to 6 months between visits. They also shared some great news - I asked the question just to confirm, "So, we are coming up on one year NED?" They said no - it will be TWO years in September. Dr. Maris starts the time from time of transplant. He believes that the remaining amount of spots that light up after MIBG are dying/maturing or dead/mature NB cells and the scan still picks them up. TWO YEARS in two months! They also gave Brandon the OK to play tackle football this upcoming school year. His weight is up a little - 58 1/2. We are trying hard to hit 60. Getting closer....

Our mini-vacation in Philly was very fun. Brandon's cousin Courtney and her mom, Tammy, flew up on Wednesday after Brandon's appointment and we began our adventure. We took them to the RMH. Brandon showed them around. We walked down the street and ate a Philly Cheesesteak. I couldn't tell you how many miles we walked on this trip. We took in so many sights! To the Franklin Institute to see King Tut, to the Art Museum, to the Philadelphia Zoo, to the Liberty Bell, to Independence Hall, to Center City....

A few funny stories from the trip....

Brandon & Courtney were about 6 inches from the trunk of an elephant at the zoo. It is a city zoo, so the exhibits are small and you are very close to the animals. We didn't realize just how close you could get. Brandon & Courtney were standing up front checking out the elephants. One of them decided to put on a show and walked over to get in the water right in front of our kids. The elephant would go under water, get a log and play with it and then he reached out his trunk to investigate and he came so close to the kids. Tammy has lots of pictures. It was amazing!

We went to Center City on our last night there to eat dinner. We decided to eat at the Hard Rock Cafe. We had just ordered our meal and were sitting there chatting when we see flashing lights. My first thought was it looked like disco/party lights and I figured it was Hard Rock and maybe they were doing something fun. Then we heard an alarm and a pre-recorded voice saying to remain calm and something about a fire. We start looking all around and of course become worried because this is in Center City and in a huge building - so a fire could be anywhere. The waitress comes boucing by and calmly yells over all the noise - "It's just the quesadillas - it happens all the time." And no, we weren't the ones who ordered them!

I will try to post pictures once I find my camera plug for the computer.

Brandon has been back to the pediatrician since my last post. Continuing to get his immunizations all over again. Also, she is following him for this cough he has. They believe it is allergy related. He had the same issues when he was a toddler. Treating allergies with zyrtec and occasional albuterol inhaler.

Brandon is staying busy this summer. We had a fun fourth - food, family & fireworks. Brandon has been going to the movies, playing videogames, swimming, going fishing... He is spending a lot of time with Aunt Ashley. She will be moving to Charlotte in August to start college. She babysits him on Tuesdays & Thursdays. Brandon is getting spoiled to being with her - they are like brother and sister. It is very sweet. I think its going to be hard for him when she moves away (even though it is only an hour away.) The whole family minus me (MOM) went fishing the day after the 4th. They had a blast! Brandon told me all about the fish he caught. He still won't bait his hook by himself, but he does do the rest. From what I understand, Papaw - Nana - Ashley - and Dad don't have anything on our little fisherman Brandon. He wants to go again. We took Brandon to Discovery Place in Charlotte - thanks to our friend for the free passes. We had a great family day that day. We stopped for ice cream on the way home.

Upcoming events include a beach trip to Myrtle Beach and an awesome trip to New York City! Both trips are planned for August. How exciting!

Football registration is in August. Brandon is looking forward to this. You can just see the excitement on his face!

Please remember Brandon in your prayers - may he be free of this disease forever! Remember the other brave children fighting the NB beast. Our friend from Brenner's, James Runde, is at CHOP today searching for a new treatment plan.

Have a great week!
Wendy

Saturday, June 16, 2007 8:16 PM CDT

Sorry I am so late to post...we just got home from Philadelphia and I didn't have my laptop with me.

Brandon's tests were NORMAL!! Still NED!!

Thank you for your prayers! We can't explain how blessed we are and how grateful we are to the Lord for all he is doing for our Brandon!

I will post more details soon....

Love, Wendy

Saturday, May 26, 2007 7:45 AM CDT

Wow, how time flies! I've wanted to update, but just haven't had time and now look, it's almost been a month. But as you know - no news is good news.

Brandon is doing great other than he had a bout with walking pneumonia a few weeks ago and now he is struggling with his seasonal allergies. We can handle that, though. He had an appointment with the pediatrician for his 8 yr old checkup after his birthday. It was nice to have a normal visit - he hasn't had a "check up" since his 5 year old checkup in 2004 before his diagnosis. We looked at his growth chart and he is projected to be between 5'7 and 5'9. At the rate he is growing, I think he might beat that. He seems so tall to me. Maybe I am shrinking...

He's been playing flag football and being a superstar! Touchdowns, interceptions, pulling flags, throwing touchdown passes....he is "having the time of his life" as he so sweetly put it one day at his game.

My parents had a treehouse built for his birthday, so he's been spending time in it playing. We are working on opening the pool so we can start swimming! Brandon and I LOVE to swim. I can't wait!

School is almost out. June 8th is his last day of second grade. He is counting down the days.

We will leave for Philadelphia on June 11th for his quarterly checkup. Ashley is going with me this time. This visit will be exactly like the past few. He will be in clinic on Tuesday for bloodwork, urine test and MIBG injection. Wednesday is his MIBG scan and meet with the doctors to review his results. (Pray for continued NED!!)

Brandon has a special treat on this trip. His cousin, Courtney, and her mom, Tammy, will be flying up Wednesday to spend time with us after his appointments. Brandon gets to show his cousin around the big city of Philadelphia. He will be the tour guide and show her all the things we've been seeing over the past few years. We are excited about this!

Brandon has a football game at 11 today, so I had better go get the boys moving.

The past few months have been really difficult for our friends in the NB world. Kendall and Penelope's battles ended as they earned their angel wings. Bryan T. was surprisingly called home too. Please pray for peace and comfort for their families. Carter is in need of our prayers as he needs his miracle. Pray for James as the doctors decide on a new treatment plan for him. May God's love and grace help these children and these families during these troubled times. May they know they are surrounded by Him and blessed by His promises.

Love, Wendy

Monday, April 30, 2007 5:18 AM

HAPPY BIRTHDAY TO BRANDON!!!

8 years old today!!

For the first time in 8 years, our car will be without a car seat of some sort...WOW!

We'll be celebrating today with lots of love, happiness and thankfulness.

Love,
Wendy

Wednesday, April 25, 2007

UPDATE TO POSTING BELOW:

The cardiologist appointment was today. They did repeat the echocardiogram and do more thorough testing on his left ventricle. Everything came back NORMAL! The previous test must have been an error. His shortening fraction was back up to 33 - the highest its been along. Our prayers were answered once again! Thanks to everyone who prayed for Brandon. We are very happy and very relieved.

SUNDAY, APRIL 22, 2007

Sorry it has been so long! We've been busy.

Easter wasn't the best for us, we had a stomach virus and were very sick. We couldn't even go to Church! The Easter Bunny did bring Brandon a wonderful basket full of goodies. We tried to dye Easter eggs, thanks to my Mom for helping out.

We made it to the beach for spring break with Tammy and Courtney. Weather was a little cool - we even had to use the gas logs! By the end of the week, however, it did warm up. Ashley and my Mom joined us for the weekend. The kids enjoyed playing in the sand and even toughed it out to briefly get in the ocean. On Saturday night before we came home on Sunday, Courtney and Brandon were playing in the parking lot of the condos where my Grandparents were staying. Courtney fell and fractured her arm. Ashley took Tammy & Courtney to Southport to the hospital around 10:30 pm on Saturday night. They did not make it back to the beach house until 4:00 am!! One doctor, two heart attacks, gun shot wound, and a skydiving accident...that's an equation for a long night!! She has her cast on and is doing fine now.

This past week saw new members at our house - or zoo as it is so quickly becoming. Papaw gave Brandon two baby ducks. (Noah & Andrew) Then on Wednesday, Brandon's donkey, Stacie, gave birth to a new baby donkey!! She is so pretty. I can't believe how cute she is! Brandon named her Emmie.

Brandon started flag football again this past week. They played a practice game on Saturday. While playing quarterback, he threw a touchdown pass. Then when they were on defense, he caught an interception and ran it in for a touchdown!! He was so proud. He said he was having the time of his life!

Brandon has a birthday coming up on April 30th! He will be turning 8 years old. Wow, my baby is growing up!

His appointment with the cardiologist is Wednesday, April 25. I will update once we get information. Please say an extra prayer for Brandon that his heart is okay and that the test was incorrect.

Also remember our friends from CHOP, the Jackson family. Their son, Kendall, earned his angel wings. (www.caringbridge.org/ny/kendall) Continue to pray for sweet Penelope. (www.caringbridge.org/ny/penelope.) NB fighters to remember are James R., Brandon L., Katie K., Big James, Bryan T. and so many more.

With love,
Wendy

Wednesday, April 4, 2007

UPDATE TO PRIOR POSTINGS

Let me share some good news. Today the urine test came back - NORMAL!! Also, the test they did on his vaccines shows that they are taking (his immune system is responding to the vaccines and keeping the antibodies) so he can continue re-immunizations. We have an appointment on April 25th with the cardiologist.

Hope everyone has a great Easter. This is such a special holiday! Thank you Jesus for the sacrifice you made for us and for your undying love.

Keep Brandon in your prayers. I'll update again when we return from our spring break vacation!

Wendy

MONDAY, APRIL 2, 2007

UPDATE TO POSTING BELOW

I received some of the test results today. Needless to say, it was an emotionally draining day. The nurse read his CBC and chemistries - all normal. Then attempted to explain his echo to me. I was told "normal right activity" and "decreased left activity." No further information helped me. She said the long term doctor (Dr. Castellino) would be in contact with the cardiologist and get back to me later in the week. So, at this point I was worried sick - what was going on? Later in the afternoon, I did speak with Dr. Castellino and here's the deal. They measure the shortening fraction which shows the contractility (squeezing/then relaxing) of the heart. Some of the chemo he had can damage the left ventricle/chamber and slow it down. The test shows "decreased activity." We have two options - wait and follow him closely or go ahead and see a cardiologist. The test is very sensitive and they want to repeat to get another low number to confirm there is something going on here. So, we are waiting to hear from the cardiologist for an appointment. Please say an extra prayer for Brandon that the number was falsely low and the next tests will show his heart is perfectly fine. I will keep you updated.

SUNDAY, APRIL 1, 2007

The weather has been wonderful. Near 80 degrees - very warm for this time of year. But we've been enjoying it.

Brandon had his 3 month checkup at Brenner's on Friday. It was strange to be there with the time lapse between visits. Shea (triage nurse)even re-introduced herself to Brandon to be silly. Everyone commented on how great Brandon looks. Weight was stable at 56 1/2 lbs and he is 49 3/4" tall. Wow he is growing! They took a urine sample for the VMA/HVA test (high levels can indicate nb.) They drew blood for a CBC, chemistries and even tetanus titer. The tetanus titer will just verify that his new vaccines are "taking." They also scheduled an echocardiogram, which I wasn't aware of. But at any rate, it is done. All of these tests were just routine - to keep a check on things. I do not have any test results. I will call the clinic on Monday to see if they have any info for me. We will not go back to Brenner's until after our next visit to Philadelphia. Dr. McLean and Dr. Castilleno will be making a "long term" plan/schedule for Brandon. How great to hear those words!

Michael and I attended an Art Reception at the Brock Performing Arts Center in Mocksville with Brandon. A piece of his artwork from school was selected to be on display. We were so proud of him and happy for him.

He started the AIG classes at school. This should help to make school more challenging and interesting to him. Alot of the work becomes routine. He has been very interested in their science project - hatching baby chicks. He would wake up in the mornings ready to go to school so he could turn one of the eggs. The chicks hatched last week.

Brandon is signed up and ready to go with flag football this spring at the YMCA. He had the choice to either play baseball or football since the game schedules will conflict. He chose flag football. We are excited to see him play again.

Today we had a wonderful Palm Sunday at Church. The children had a small program during Worship. They walked in waving palm leaves and singing. They sang two songs in front of the Church. We were happy and proud to see Brandon up front with his buddies singing. They will also sing special songs next week for Easter Sunday. This afternoon we went to the Easter Egg hunt at Church. I loved watching him run all over the place with his friends picking up eggs. His cousin Courtney came to the egg hunt and then came to our house afterwards to play.

Spring break is coming up next week. Brandon and I will be spending the week at Oak Island with Tammy and Courtney. We can't wait to head to the beach!!!

Brandon's 8th birthday is on April 30th! 8 years old??? I can't believe 8 years old!!! We definitely plan on celebrating!

Please say a special prayer for fellow NB fighters: Penelope, Kendall, and Brandon L. These brave kids and their families are facing tough times right now. Also remember James from Brenner's - he has some upcoming tests.

Pray that Brandon will be free of NB and continue to live life to the fullest!

Wendy

Tuesday, March 6, 2007

The Koontz family has been sick with a virus of some sort for the past week. Sore throat, cough... Brandon ended up the worst of the three of us. He now has bronchitis. Two trips to the pediatrician, several missed days of school and now an antibiotic. He's on his way to recovery!

Two new members were added to our household this weekend also. Brandon has two new pets. First is a new blue beta fish named Bowser. Second is a new blue parakeet named Shareia. He made up the name for the bird! I told him he had to spell it for me, so he wrote it on a piece of paper and taped it to the birdcage. Jake, Brandon's beagle, does not like the new bird. He tries to get to her and barks at her a lot. He is waiting on his opportunity to snatch her. Jake even noticed the new fish and had to check him out by sniffing the fish bowl. He isn't as interested in the fish as he is the bird. Brandon loves animals so the new pets are making him very happy.

Michael's 36th birthday is coming up on March 18th. Brandon and I gave him an early birthday present on Friday. We bought him two tickets to see one of his favorites - BLS/Zakk Wylde at Ziggy's in Winston on his birthday. We taped the tickets to the bathroom mirror with a note from Brandon that said "Happy Early Birthday! Love you Dad!" He is excited about the show. I think he is taking his brother Keith with him.

I am anxiously awaiting spring. I can't wait for all the outdoor fun to start again. Brandon plans on playing flag football again in the spring, softball starts for Michael, spring break at the beach this year, Brandon's birthday in April.... So much to look forward to!

New Photos added to Yahoo Photo site - see link below. (Oct & Nov are the new ones.)

Wendy

Saturday, February 24, 2007 7:16 PM CST

We have been enjoying the spring-like weather here at home. In fact, this afternoon we had hamburgers and hot dogs off the grill. Later, we started a fire in the firepit I got for my birthday. Brandon and his cousin, Courtney, roasted marshmellows. We had so much fun outside! The weather has been nice all week. Every afternoon after school Brandon and I have tried to get outside to play - basketball or volleyball or playing with Jake.

Brandon went to the pediatrician this week to start over with his immunizations. He received five shots on Wednesday. He did a wonderful job - no tears. Such a brave little boy! He goes back after his birthday in April for the next round of immunizations.

Here's a little story from school. Last Friday was "Wacky/Tacky Day" at school. I had prepared Brandon's clothes the night before and had forgotten about the special day. So, Friday morning, Brandon called me at work and said,"Mom is this what I am supposed to wear today? Don't you remember its wacky/tacky day?" I apologized and said he would just have to miss out. But, Michael was home to take him to school and they worked together to come up with something. Michael explained on the phone that he thought they did a good job because even Brandon was laughing at himself. He said he was ashamed to drop off his kid at school looking like that! I picked Brandon up from school that afternoon. I pulled up and waited for them to walk him to the car - I did not even recognize my own child. They did such a great job that Brandon's class voted him the best dressed for the day! He won a prize. He was so proud. He had worn a pair of black pants that were too short for him with two different socks, one being a baseball sock. He wore a pair of Shrek boxer shorts on top of his pants that showed a picture of Shrek and Donkey and a message on the back saying "Kick This." He had on a long sleeved orange shirt with a blue - Hawaiian style flowered button up shirt on top. He had a blue wig on with an army hat on top. Pretty cool!

Please remember fellow fighters: Carter, Kendall, Brandon L. and Penelope in your prayers.

Also remember my Grandmother, Mama Jean, in your prayers. She is at Baptist tonight for heart monitoring. Doctors aren't sure what is going on with her.

Love,
Wendy

Thursday, February 8, 2007 7:36 AM CST

First to the most important news of the day....Brandon's scan was normal! Still NED!

Thank you all for your prayers and your messages in the guestbook. They all mean so much to us! Praise the Lord for all He has done for our little boy! All the Glory belongs to to Him for this wonderful miracle!

I'll talk medical news first and then a few details of our trip.

After his MIBG scan yesterday, we left nuclear medicine and headed to the clinic to wait on the results. Typically procedure goes like this: check in, triage, nurse comes & takes you to room, Pat (NP) comes to room to greet you, Dana (Social Worker) comes to room to greet you, then Dr. comes in. Well, yesterday we checked in, went to triage and waited for the nurse. Out walks Dr. Mosse headed towards us and she says, "Brandon, just who I am looking for. Come on and go with me." So the Dr. came to the waiting area to get us - is this good or is this bad?? She chatted with Brandon down the hallway. We entered the room, she closed the door and before we could sit down, she grinned from ear to ear and said,"Let me just get this out there....Brandon's scan looks completely normal." She grabbed me and hugged me and hugged Brandon. The whole team is so excited! Dr. Maris was out of the clinic yesterday, but we saw him on Tuesday. Dr. Mosse said he told her how wonderful Brandon looked and he told her to email him after Brandon's scan with the words "Brandon is OK." Dr. Mosse said she had gone to Nuclear Medicine to see his scan. She asked them "How is Brandon Koontz's scan?" They replied "normal." She told them she wanted to see it. They told her again "it's normal." She said, "I still want to see it." She explained to me that she didn't doubt what they were reporting, but she just wanted to see the NORMAL scan because it was such a happy moment for her! Everyone started coming in to hear the report. Dr. Mosse was so thrilled that she went ahead and took us back without sharing the news with the team as they usually do. We had a full room at this point - Dana, Pat & Dr. Mosse spent a long time with us just celebrating the wonderful news and discussing what the plan is now. No more trips to Brenner's for blood counts, no more medicine. Brandon starts his re-immunizations at the pediatrician now. We will return to Philly in 3-4 months. They want to stay on this quarterly schedule for now. So much to be thankful for!!

Now to the other stuff....Yesterday, we woke up at 7:00, raised the blinds and surprise, SNOW! Everything was so beautifully white! Only about an inch, but still very nice to wake up to. It was so cold in Philly this time. In fact, unseasonably cold. Tuesday was -6 degrees with the wind chill. Yesterday morning was 1 degree. Brrrr!

We managed to go to the Franklin Institute Tuesday afternoon following his hospital visit. We spent about 2 1/2 hours there exploring the different exhibits. Brandon had so much fun. His favorite part was in the human heart section. You could stand on this display and it would fill a tube with red liquid which represented blood. It would show how much blood was in your body. He found it very interesting to see the difference between his blood, mine and my mom's. I have a feeling we will visit the museum again on one of our future trips.

We met another NB family at the RMH on this trip - Brandon Loose and his Mom from PA. He is the cutest little boy! He was wheeling around the hospital on his Heely's - the shoes with skating wheels in the bottom. I told his Mom he needed to work with our Brandon to show him how to use them. Brandon got a pair for Christmas and still isn't confident enough to skate around like this little guy was doing!

We arrived home last night right around midnight. Traffic was unbelieveable! We ran into a little congestion outside of DC, but never had to really sit on I-95 at a stand still.

My little boy is waking up so let me go give him lots of hugs and breakfast, too.

Lots of love,
Wendy

Monday, February 5, 2007 6:09 PM CST

Greetings from the very bright and cheery playroom at the Philadelphia Ronald McDonald house!

We arrived around 5:30 this afternoon. Traffic was wonderful! We cruised right through Alexandria, VA / Washington DC area! Such a shock!

We just had a wonderful dinner prepared by gracious volunteers. Brandon is enjoying craft time with his favorite craft teacher, Sherri. I think they are making a Valentine craft tonight.

Tomorrow we are scheduled to be at CHOP around 11:00 for IV placement, urine test, bloodwork and then MIBG injection at 12:30. The MIBG scan is scheduled for Wednesday at 10:30. Then on to clinic for results.

Keep Brandon in your prayers tonight! We are believing that his tests will be normal - no signs of neuroblastoma!

Love to you all,
Wendy

Monday, January 29, 2007

Brrrr - its so cold!! What happened to the spring-like weather we were having. Oh yeah, it is winter, so these temperatures are normal.

Life has been a little topsy turvy at our house. Brandon has been battling several different colds/viruses it seems. He ran a high fever for 24 hours last weekend - reaching 103.6. He has been coughing and congested. He has had unexplained belly aches over the past few weeks. The belly pain has concerned me more than anything else, so I talked with Philadelphia. They don't want to change the schedule. They aren't too concerned since it has only happened 4 or 5 times over the past 3 to 4 weeks. Pain lasts no longer than 10 - 15 minutes and subsides on its own. So, we wait and see.

Next Monday we leave for Philadelphia for Brandon's 4 month scans and tests. My mom will be joining Brandon and I. Michael will stay to work. We will either return late, late Wednesday or early Thursday. Just depends on how the appointments go. We will have test results on Wednesday. Please say extra prayers for this visit! Pray for clear scans and continued NED for Brandon!!

Let me brag a little - Michael & I spent Friday morning at Brandon's school for the 2nd quarter awards ceremony. Brandon won two awards - PE star student and Star Student from 2nd grade. Congratulations!! He had to walk in front of the K - 2 classes in the gym to accept his certificate and have his picture taken. We also stayed for a special reception they had for the kids. Such a wonderful day! He also received his report card - of course above grade level! We are so very proud of Brandon. He missed most of Kindergarten and first grade due to treatment. Now he's back at school and performing like he didn't miss a beat!

Hope everyone has a great week. I will update again soon as I know you will be looking for updates on our trip.

Wendy

Thursday, January 11, 2007

Not much has changed since my last post. Brandon is still doing great.

He took his last dose of Bactrim (preventative medicine he has been taking since starting treatment in 2004.) For the first time since November 2004, Brandon is completely free of medicine!! What a great accomplishment to celebrate!

We went to Brenner's last Thursday for his once a month visit - weight up to 54 lbs (still too small in my book - I will be happy when he reaches 60), height up 1/2 inch (so he's growing, good), all counts normal, all chemistries normal... Couldn't ask for a better visit!

We had a very special weekend this past weekend. Michael and I finally made it official and joined the Church. More important was that Brandon and Ashley were both baptized! Such a wonderful service at Church. Everyone gave us hugs and there were lots of tears around. They are already our family! Also, Brandon served as acolyte for the first time. He did an amazing job! On Sunday morning before Church, he wanted to back out. Thanks, Regina, for spending the private time with him showing him how to do it and letting him practice. Thank you, Seth, for showing him the way and helping him through it! I was so proud of him for so many reasons. Seeing him standing up in front of our Church looking and feeling so great, growing up...Thank you, Lord, for all YOU have done. Praise be to God for his blessings!!

Just a reminder - we are scheduled to be in Philadelphia February 6 through February 8 or 9. Time for tests again. Wow, the four months have flown by! Keep Brandon in your prayers for his upcoming tests.

Please remember Penelope London in your prayers. She was at CHOP last year while we were there for scans. She is facing a very difficult time and her family could use all our love and support.

www.caringbridge.org/ny/penelope

Love, Wendy

Wednesday, January 3, 2007 6:41 PM CST

Happy New Year!

Everyone is doing great at our house. Getting back into the swing of things - work & school. We had a wonderful Christmas. Santa was very good to Brandon again this year. He's been busy playing with all his great gifts including his new Nintendo Wii!

We received the information on our next Philadelphia visit. We will be going up on February 5th through February 8th for tests including MIBG scan.

Please remember Brandon in your prayers with his upcoming tests. Always keep the other brave children fighting this disease in your prayers too.

Love,
Wendy

Thursday, December 21, 2006

Just a quick update.

Brandon has completed the Accutane part of his treatment! He is done! Yippee!!

He has been sick however with a virus and an ear infection. We went to the PEDIATRICIAN on Monday! Yep, the pediatrician, not the oncologist. His team at Brenners were excited that he could now return to a regular pediatrician for this kind of thing instead of them. It is a small milestone in our world!

He's back at school today. It should be fun - his class will be decorating cookies and watching a Christmas movie.

We went to the Festival of Lights in Clemmons. Brandon just loved it. He made us all sing the Twelve Days of Christmas - it was so funny listening to us try to remember the song. We laughed so hard.

The Christmas Play at Church was wonderful. Brandon made a great Gabriel the Angel. His teacher, Mrs. Marroquin, came to his play. That was the sweetest thing! He had mentioned it to her at school and she actually came to see him.

What a wonderful season this is! Spending time with family and friends, eating lots of good food, sharing gifts... but most of all, celebrating the birth of our Lord and Savior, Jesus Christ! Hoping everyone has a very blessed holiday!

We love you all!
Wendy

Sunday, December 10, 2006 7:09 PM CST

Can you believe it is the middle of December? Time is going by so quickly! We are doing great.

Brandon has 5 more days of accutane...yes only 5 more days and he is completely finished!! WOW. I don't know how we are going to feel...Brandon totally off of treatment. No medicine. It is a wonderful feeling, but still a little scary.

We have been busy decorating for Christmas and enjoying all there is to enjoy about the holiday! We were "trapped" at home last year - Brandon was restricted due to his transplant. This year we are able to go out shopping and share in the joy of the season. Things like the music and the decorations in the malls and the stores. Brandon was able to go out this year and choose our Christmas tree. He knew which one he wanted the minute we arrived. We looked around, but he kept going to the same one, so it is beautifully decorated in our living room. And we have been lucky so far, Jake the beagle has stayed away from it. Brandon is practicing for the Christmas play at Church. It is next Sunday night. He is going to be Gabriel the Angel. He has about 5 lines to memorize. He has done a great job. We can't wait to see him and the entire children's program.

We went to the Outrageous Courageous Kids Christmas Party from Brenners - just for the kids on the 9th floor. This was our first time being able to attend. Brandon had so much fun! They had music, crafts, face paintings, tatoos, balloon making and of course, Santa Claus! The food was all catered for the children - Domino's Pizza, chicken nuggets, cookies, cake... We were also able to meet a few of our online friends - Morgan and her family and Grace and her family. Stephanie & Kendyl were there too.

We are definitely in the Christmas spirit around our house! Brandon can't wait and neither can we! We are just soaking in each and every moment.

We will never forget the words of Dr. Maris & Dr. Mosse last year - how they wanted to give us the best Christmas gift they could. And they did. The scans were improved 85-90%. And today the scans are normal.

Christmas is already the most special time of year because it is the birthday of our Savior, Jesus Christ. We are so thankful to him for all he has done to bless our family!

Love,
Wendy

Wednesday, November 22, 2006 7:30 PM CST

We have so many things to be thankful for this Thanksgiving. (Actually, each & everyday we have many things to be thankful for!!) But the holiday just makes us really take a look at our blessings!

Home...family...Brandon...together...

Two years ago tonight we were at Brenner's Childrens Hospital on the 9th floor with a very sick child and some very tough news.

One year ago tonight our family was separated - Dad in NC, Mom & Brandon in Philadelphia undergoing radiation treatments.

This year, Praise God, this year...oh this year! We are home together as a family! Brandon has been NED since June....I can't put into words how this all feels. I just know that we are happy beyond words at this moment.

Hope everyone has a wonderful Thanksgiving.

God Bless,
Wendy

Wednesday, November 15, 2006

The golf tournament this weekend was so much fun! We had a blast. Brandon was able to go. He drove the golf cart for his dad's team. They also let him do most of the putting for the team. The weather was absolutely beautiful. Thank you Lord for blessing us with unseasonable weather! We enjoyed it so very much. Thank you to all the kind and caring people who worked hard to put this tournament together. Thank you to the sponsors and teams! It was truly a success! Brandon was even given a set of junior golf clubs!

This weekend we are going for a long overdue family getaway. Shirley & Steve are letting us use their beach house at Oak Island. Michael will be going with Brandon and I on the first trip since Brandon's Make-A-Wish in May. Brandon wants to go fishing with his dad. We can't wait to get there! Hopefully we can leave late Thursday afternoon and return on Sunday.

Brandon will finish this round of accutane on Friday. Can you believe there is only one more to go? He will be done with accutane around the 15th of December...that's it. No more. He will be completely done with this 6-month course.
I can't believe how fast time flies!

Please continue to remember Brandon in your prayers. Also remember fellow NB warriors who are currently fighting relapse - Penelope, Kendall, James & Carter.

Can you believe Christmas is so close?? Oh, and this will be our first Thanksgiving at home in the past few years. Last year, Brandon & I spent Thanksgiving living in Philadelphia for radiation and the year before was diagnosis year and we were in Brenner's. Praise the Lord for being home and Brandon being healed! God has truly blessed us!

Love, Wendy

Thursday, November 2, 2006

This is Wendy again. Its 4:30 pm and we just got home from the hospital. Brandon feels so much better! The cultures are negative, but it is early still. However, Brandon didn't run a fever at all today. The antibiotics and fluids definitely helped. The doctors were just concerned by the high and consistent fever. Brandon is still "fragile" even though a year post transplant. It was very encouraging to know that his body responded and tried to fight off whatever was going on - viral or bacterial. I will update more later. We are just getting settled at home. Most important is Brandon is feeling 100 percent better!!

Thanks for all your prayers!
Wendy

Wednesday, November 1, 2006

Everyone, this is Ashley. Brandon has been admitted to Brenner's with a high fever. His test for pnemonia was negative, but he is being kept for observation. Please remember to pray for Brandon, Wendy and Michael.
Below is Wendy's post from earlier today.

Sorry it has taken me so long to update!

Brandon finished his flag football season this past Saturday. It has been such a blessing to spend Saturday at lunch watching him play! Brandon has been so happy! We even made it routine to stop by C's BBQ for lunch after the games to celebrate and talk over everything that happened at each game. I guess you could say we were soaking it up and treasuring every moment of it! C's has Brandon's favorite french fries and sweet tea, so it was his special treat to go there.

We've been getting ready for Halloween. Decorating and making crafts. Of course carving pumpkins. Brandon made two jack-o-lanterns this year.

He was looking so forward to yesterday. His class went on a field trip in the morning and then they were having a Halloween party in the afternoon. I was able to get off early from work to go to the party with him.

When I arrived at school, I noticed he wasn't feeling well. His teacher said she had also noticed and that he felt warm to her. So, Brandon tried his best to enjoy the party, but he just didn't feel good. When we got home, his temp was 100.6. He still wanted to go trick or treating. I felt so bad for him. He deserved to go trick or treating this year - the past few years haven't been the greatest.... So, we tried to go. He was a trooper. He got really tired and grumpy. He even told people "no thank you" when they offered him candy. So we made it an early night. We went with Courtney and Tammy. Courtney was Cleopatra and Brandon was Batman. (I am so happy he chose to be a superhero at the last minute instead of something spooky and scary!) When we got home, he ripped off his costume and hit the couch. He felt so terrible. I checked his temp and it was 101.6. He feels so bad, that he hasn't even gone through his Halloween bag yet to check on his candy like we always do. I talked to Diane at Brenners. She said lots of kids were sick with viruses. Just to keep him home from school today and watch him. His immune system should be able to fight whatever it is. He doesn't have the port anymore, so no fear of infection there. If his cough worsens, if he feels worse or if his fever worsens, they will see him today or tomorrow. He is scheduled for his checkup on Friday anyway. So this Halloween hasn't been the best either.

All of us are feeling scared. We can't help but worry about what is going on in that little guy's body! I also know that so much about this time of year is hard for us. It is of course when he first became sick. I can't tell you how my heart broke at school yesterday. I just remember back to his Kindergarten Halloween party when he was hurting and running a low grade fever and we had no idea what was going on. Yesterday seeing him feeling bad and it being Halloween, well you get the picture. And Brandon is so smart. Yesterday he sat on the couch and cried after realizing he had such a high fever and that I had called the clinic. He was scared. He remembers the events of Kindergarten year all to well. He said, "Mom, I don't want to be sick." I told him, " Brandon, you are like the other kids, you are going to get colds and viruses that make you feel bad." He said,"No, Mom, I mean I don't want to be SICK. I don't want my "sickie" to come back." So heartbreaking. He was able to say what we were all feeling. We know that this is not his neuroblastoma, it is only virus or cold, but we are overwhelmed with the feelings of diagnosis year. "Sickie" is the term we gave his disease. He was only five when diagnosed and that was easier to understand. Also, it was easier for us to talk about using that term instead of the "C" word - cancer. Brandon knows now though, what cancer and neuroblastoma are, but "sickie" is still part of his vocabulary too! And that is okay.

Last night his temp only got worse. The past two times I took it (3:30 am & 8:30 am) it has been 102.5. The Tylenol may break the fever but once it wears off, the fever is back. Of course, he doesn't feel like eating. I am trying to get him to drink. A few sips of water here and there. I did get a little Gatorade in him last night. He ate 3 spoonfuls of Rice Krispies and a few sips of chocolate milk about an hour ago.

He's resting watching Dora the Explorer and fighting sleeping. I wish he would just give in and go to sleep to get some rest! But he is a tough one!

So please remember Brandon in your prayers today. And Michael and I too as we take care of him!

Brandon is asking for a warm bath. Nothing like soaking in a hot bath to make you feel better (and run your temp up!!)

Happy late Halloween.

Wendy

Wednesday, October 18, 2006 8:40 PM CDT

Great visit to Philadelphia! Brandon's MIBG scan is still normal! 4 months of NED (no evidence of disease) Lots of hugs and high-fives going around at the clinic today. Everyone is so excited about how great Brandon is doing. Thank you for all of your prayers! God continues to look after our precious Brandon! We are truly blessed!

We return to Philly in four months! Brandon will finish his accutane - only two more rounds to go. At that time, he will be tested for his immunities and be re-immunized with childhood vaccinations. They want to wait until he finishes accutane to do the vaccines.

It's been a long day, so I will update with more details of our trip tomorrow. I knew everyone wanted to know the results and that we arrived safely at home.

Love, Wendy

Monday, October 16, 2006 7:11 PM CDT

We are safe and sound at the Philadelphia Ronald McDonald House. We arrived around 4:30 pm. Traffic was great. The best driving since we've been coming up here.

Since we've arrived, we have already walked to the market and picked up NesQuik chocolate milk, pixy stix, pound cake and popcorn. Oh Yeah!! We ate dinner here at the house as it was provided by an outside organization. We chatted with some other NB families. Brandon played with the kids. He participated in Arts & Crafts and made a witch's hat for Halloween. Brandon took Ashley on the grand tour of his "favorite hotel" the RMH. Now we are settled in our room watching Disney's "The Wild." Brandon has fell in love with this movie. He watched it twice in the car on the way up here.

Tomorrow we are scheduled to be at CHOP at 11:30. Brandon will have blood work done as well as a urine test. He will have the injection for the scan, which is scheduled for Wednesday at 8:00 am. Please remember Brandon in your prayers.

Love, Wendy

Tuesday, October 10, 2006 2:24 PM CDT

It has been very busy around our house lately! I'm still adjusting to my new job and the changes to our routine. Brandon is enjoying school and doing excellent work! He received his mid-term report and we are very, very proud of him.

This past weekend was spectacular! Brandon went to the Panthers game in Charlotte on Sunday. We were all dressed in our Panthers attire. Brandon debated over which jersey to wear, #90 Julius Peppers or #89 Steve Smith. He chose Peppers since Peppers had sent him a signed football a couple of years ago. Brandon was a guest of the Panthers' Keep Pounding program. We met the director at noon and she gave each of us (me, Michael, Ashley & Brandon) goodie bags full of Panthers items. Of course, Brandon's bag was more special. He received the coolest gifts including 2 t-shirts, 2 hats, stickers, pennants, and a football! Next, Bernadette took us through one of the tunnels and out on the field!! Brandon was so amazed. He never stopped grinning. We stood on the sidelines while the players came out to warm up. As a guest on the sidelines, you are not allowed to ask for autographs. You can take pictures, though. The President of the Panthers came over to meet us and he chatted with Brandon. Steve Smith came out to practice and to our shock and surprise, he stopped in front of Brandon, took his helmet off and asked Bernadette for a pen. He took Brandon's Panthers hat off of his head and signed it. He asked Brandon to hold his helmet while he signed the hat. He also took the program book and signed it too. I took pictures. Camera men came running over and snapped pictures of them together. Steve Smith stood there and talked to Brandon. He even told Brandon that he wasn't just special, he was fantastic. People were calling out Steve's name from behind us, trying to get an autograph, but he was truly focused on Brandon. Such a nice guy! Can you believe Brandon had Peppers' jersey on instead of Smith's?? Next, Brandon was taken out on the field to meet the owner of the Panthers, Mr. Richardson. Brandon looked so awesome on the field! Sir Purr, the mascot, came over and spent time goofing off with Brandon. They also took pictures together. At the end of warm ups, the ball that the team was practicing with was handed over to Brandon to keep. We stayed on the field through everything including the National Anthem and the player introductions. We left to go to our seats for kickoff. We sat behind the field goal posts. The seats were great! Brandon had his face painted...of course! A panther on one cheek and a paw print on the other. I have pictures to post so you all can see how much fun we had. My aunt, April, and her husband, Tom, live in Concord and they were watching the game on TV Sunday. Tom saw Brandon on the pre-show. He said the camera zoomed in on Brandon while he was standing on the sideline. He said it was a great closeup of Brandon in his Panthers jersey and hat.

We will be going to Philadelphia next week. Yes, we were originally scheduled to go this week, but they had to reschedule. We will leave on Monday and should know the test results sometime on Wednesday when we meet with his Drs. Please say extra prayers for next week's visit!

Brandon just started Round 4 of the Accutane. We were at Brenner's on Friday for his monthly visit. His weight is up one pound and all of his counts are normal. They keep telling me how great he looks! We stopped by the nurses station to visit our wonderful friends.

Please remember one of Brandon's buddies in your prayers. I have mentioned him before. His name is James Runde. They live in Greensboro and were treated at Brenner's along with Brandon. James has been in NY getting further treatment and we heard news today that he has relapsed. His website is www.jamesrunde.com.

Our Sunday school class is planning The 2nd Annual Benefit Golf Tournament for Brandon. The date is set for November 11. We are looking for sponsors. We are planning on attending this tournament. Brandon was unable to attend last year's because we were in the hospital. Just email me if you are interested.

Love, Wendy

Wednesday, September 27, 2006 11:45 AM CDT

We are having a great week!

In case you missed it: Brandon's one-year post transplant day was the 21st. And don't forget it was also Jake's birthday. We celebrated.

Brandon finished Round 3 of the Accutane. He has two weeks off of it now. Good, his skin and body can rest a little. The accutane causes his skin to peel, he gets moody and loses his appetite.

Brandon had his first football game on Saturday. He was nervous since he isn't up to speed like all the other kids. He's been off the field since Kindergarten! But it didn't take him long to gain his confidence back. He caught the first pass of the game. And then while playing defense, he caught an interception! We were so proud. He was having so much fun out there. I think we smiled all day. It was such a heartwarming day.

Brandon is so excited. He received a package from the Carolina Panthers this weekend. He received 4 tickets to the game on October 8th and 4 pregame field passes. He gets to go on the field at 12:00 to watch the pre-game festivities including warm-ups! Thank you to our very dear friend who arranged this - you know who you are. We love you!

Don't forget our trip to Philadelphia is coming up in a few weeks. Remember Brandon in your prayers - pray for clear test results! Also remember Brandon's buddy, James Runde, in your prayers. He is inpatient at Brenner's. (www.jamesrunde.com)

Have a great week! I hope to post pictures of Brandon's flag football game soon. I will let you know when they are up.

Love, Wendy

Thursday, September 21, 2006 8:15 PM CDT

Today is Brandon's one-year post transplant anniversary!!

CONGRATULATIONS, BRANDON!!

We gave Brandon balloons and cupcakes to celebrate! I can't explain the difference in where we were last year and where we are this year. Brandon has come so far! Thank you, Lord, for all your blessings!

Today is also Jake's birthday! Happy Birthday little wild puppy! Jake got a new doggie bone to chew up and eat or leave pieces all over the floor...

I started a new job this week in Clemmons. Michael gets Brandon ready for school. My Dad takes Brandon and his cousin, Courtney to school. Ashley or my Dad picks Brandon up from school. Starting next week, I will be leaving work at 3:00. I am so excited about the flexibility at the new job. They seem so understanding of our situation and seem willing to work with me. Its been a little hectic at our house getting used to the new schedule. But we are managing. No complaining on this end. Last year we were living in a hospital.

Brandon had football practice again tonight. Michael took him, so it was Dad and son. I love to see them together, doing the guy thing. Brandon's first game will be on Saturday! We are looking forward to going.

We still have plans to be in Philadelphia October 17 & 18 for those three month tests. I am trying to make travel arrangements.

Please continue to remember Brandon in your prayers. He finishes up the 3rd of 6 cycles of Accutane tomorrow. Pray that it continues to do its job to keep the disease away forever! Also remember the family of Christi Thomas. She earned her angel wings this week. She has truly touched our lives. (www.christithomas.blogspot.com)

Love,
Wendy

Sunday, September 10, 2006 8:12 AM CDT

Updated photos on "View Photos' page and on the Yahoo Photo Site (see link below)

Brandon started football yesterday! Flag football at the Davie YMCA! He has a new pair of cleats that he picked out. We went for the first practice yesterday. He will have practice on Thursday nights and games on Saturday through October 28th.

When we arrived, we saw Jacob and his dad, Joe. Jacob and Brandon were on the same T-Ball team before Kindergarten and they were on the same flag football team when Brandon became sick in 2004. Joe was their coach during football. Joe also rode in the Poker Run Bike Ride for Brandon this past summer. We were happily surprised when Jacob and Brandon ended up on the same team again this year! Jacob didn't get to play last year either - he had surgery. So it seems meant to be that they are on the same team the first year they are both back. And Joe volunteered to coach their team again.

Brandon caught three passes and did a lot of running and throwing. He looked so great out there! We are so proud of him.

We went to the Center Fair & BBQ afterwards. We saw lots of friends. Good food and good friends - can't beat that!

Just about everyone around here is affected by a cold. Stuffy nose, runny nose....no fevers though. I also fell and sprained my ankle on Friday. It's been awhile since I've fell, so I was due one (those of you who know my history will appreciate this.)

Brandon's Dr. appointment Friday went great. He weighs 52 1/2 pounds! His counts are still normal (WBC 4.8 HGB 11.6 PLTs 214.) He started round 3 of accutane yesterday.

Please remember Brandon in your prayers. Pray that the accutance continues to do its job to keep this disease in remission! Also, fellow NB fighter Christi Thomas and her family really need your prayers. They are facing some dark days. She is at CHOP. They are a wonderful family who we have been blessed to get to know. (www.christithomas.blogspot.com) Also remember Penelope London from NY. She too is a patient at CHOP with relapsed NB. (www.caringbridge.org/ny/penelope)

Love,
Wendy

Wednesday, August 30, 2006 2:25 PM CDT

School is going great for our little 2nd grader! He is so much more mature now. He is enjoying school. He comes out each afternoon with a smile on his face. He is making new friends and having fun!

We are getting used to our new schedule. I have to admit I miss him so much during the day! I have completely re-organized our walk-in closet (all clothes grouped by type and everything...it looks great.) I have organized the kitchen cabinets and the refrigerator. I am planning on pressure washing outside when it cools off. A painting project in the house is also on my mind... Can you tell I am trying to stay busy??

Yesterday we went to the YMCA and registered Brandon for flag football. I can't explain how it felt standing in front of the building. The last time I stood there was almost 2 years ago, the night before his symptoms started. It was almost surreal. I reminded myself how blessed we were that Brandon could return this year to the sport he loves, football!! Practice starts next week and games will be on Saturday. Brandon is so excited!

It is so hard to believe where we are today. Just last year at this very time, Brandon was eduring the MIBG treatment in Philadelphia. Praise God for all he has done in our lives! Praise God for Brandon's remission!

Please remember two fellow NB fighters in your prayers. They are facing some tough times. Remember Penelope (www.caringbridge.org/ny/penelope) and Christi (www.christithomas.blogspot.com)

Love, Wendy

Friday, August 25, 2006 8:36 AM CDT

Good Friday morning to ya!

We've been having a great week at the Koontz house. Although we have missed swimming this week. Since Brandon's surgery was last Friday, he has to wait at least 7 days to go swimming.

Michael took Brandon to play golf. Brandon even drove the golf cart! He did all of the putting for his dad. They had so much fun. Brandon keeps asking when he can go again! You know that makes Michael happy - he has a new golfing partner!

Yesterday afternoon we went to open house at school. Brandon met his new teacher. He took his supplies and fixed his pencil box at his desk. Of course he had to go visit Mrs. Stein & Mrs. Seamon (Kindergarten) and Mrs. Stokes (1st grade.) He will be attending school all day this year. It feels like kindergarten all over again, since he was only in kindergarten for a couple of months and he missed most of last year. But I can see that he has grown and matured. He told his teacher that he would only need me to walk him to his class for two days and then he could do it by himself. We'll see about that...he may do fine in two days, but I am not sure about me. I told her I would love to be her teacher's assistant! But I did sign up to be a volunteer in her class. Monday is his first day.

Today is Michael and my 11th wedding anniversary. Last year we spent it in Philadelphia as Brandon was beginning the experimental MIBG treatment. This year we plan on staying home, having dinner and a movie together. Brandon is going to spend the afternoon with his cousin, Courtney.

Tomorrow is another softball tournament. Michael will be playing in Burlington. Brandon and I will be going. I get to keep the scorebook since Ashley is at the beach. Her 21st birthday was this past Monday. Wow, 21!!

Brandon finished round 2 of the accutane last night. He now has two weeks off before he starts round 3. We are only going to clinic once a month now, so we don't go back until Sept 8 at Brenners. Pat, the NP from CHOP, emailed me this week with Brandon's next visit information. We are scheduled to be in Philly on October 10 and 11 for tests. My how time flies when you are having fun. Three months from July seemed like such a long time, but its just around the corner.

I am looking for some part time work if anyone knows of anything. I need insurance benefits. I would love to be in the school system or at a bank. Just keep your ears open for me.

Hope everyone has a great weekend.

Love, Wendy

Friday, August 18, 2006 1:14 PM CDT

No more port-a-cath! Way to go, Brandon!!

We arrived at Brenner's at 6:00 am this morning for Brandon's surgery. Dr. Pranikoff removed his port around 7:30 am! Dr. Pranikoff is the surgeon who placed it in November 2004 and the one who removed his tumor in March 2005. He was so happy for Brandon. After the surgery, he shook our hands and said, "Congratulations! You made it!" He even had the port cleaned and gave it to Brandon to keep. The staff was wonderful to Brandon also. He received a special gift since it was such a special occasion. Things went very well. We were back home by 9:30! (Remember we do have a short drive to the hospital -about 40 minutes.)

Brandon slept most of the morning. When he woke up at noon, the first thing he wanted to do was eat! He has been a bottomless pit since then. The nurse said to start him on clear liquids to make sure he didn't have a tummy ache from the anesthesia. He didn't like the sound of that. He ate a little jello, kept it down and moved on to the real food! He's been up playing for about and hour now. He's such a trooper!

Thank you all for your prayers and kind thoughts.

Love,
Wendy

Saturday, August 12, 2006 8:17 PM CDT

Brandon and I are having beach withdrawal...

This week has been busy. Two trips to Winston to the hospital. One to pick up the new accutane prescription and then a full day of tests on Friday. The tests Friday included a kidney function test, hearing test, Echocardiogram, blood counts and the hva/vma urine test. Here is all I know right now: Blood counts are all in normal range and Hearing test is the same as December - damage to his high pitch sounds. We are happy to know it hasn't gotten any worse. They suggested preferential seating at school. If he has problems in the classroom, we can look into an FM system for him. But as of now, they aren't suggesting any changes. I will know the other test results on Monday. These were just routine tests. Brandon is looking and feeling great. Weight is up to 52 pounds and he is continuing to grow, up 1/4".

Next Friday is a big day. His port-a-cath will be removed. It will be outpatient surgery. Dr. Pranikoff, the surgeon who placed the port in Nov. 2004, will be doing the surgery. We will never forget what he told Brandon when he did the placement surgery - "One day, I will take this out for you." And praise the Lord the day has come!

Brandon will start the 2nd grade on August 28th! What a blessing.

Please keep Brandon in your prayers! Pray for his body to remain cancer-free!! Also, pray for the other children fighting this disease. Especially remember Penelope London and her family as they are facing tough news this week. (www.caringbridge.org/ny/penelope)

Love,
Wendy

Saturday, August 5, 2006 8:16 AM CDT

Sorry its been awhile since I posted. Brandon and I have been beach bums!

After our trip with Ashley and Nana, we returned to Oak Island this past week with Tammy and Courtney. April and Jeanna both came and had their kids, Carissa, Jackson and Catie. We had a full house! For us moms, it was like being kids again spending time together as we did when we were all little. It was so HOT at the beach this past week. If you walked outside, you broke a sweat just by standing there. Of course when you were on the beach, the ocean breeze kept you cooler. We spent one afternoon visiting friends and family who also were at the beach. Vanessa and Ben and also Jason, Heather and Kara. The kids had so much fun. They played, played and played. Jason let Brandon help him reel in a fish. Of course, that made Brandon's day. We got back late last night. Tammy and I just didn't want to leave the beach yesterday. We ended up taking Brandon and Courtney to Southport to this really cool kids shop and then ate dinner on the island. So we didn't start home until 4:30.

I am quite tired this morning, so I am making this a quick one. Brandon and Michael are still sleeping.

Brandon is doing great. He has some routine tests scheduled for August 11 - hearing test, echocardiogram and kidney function. He also starts the 2nd course of Accutane on the 11th.

I can't believe school will be starting soon - I believe the 28th. Brandon will be a 2nd grader!! This summer is going by so quickly!

Thursday, July 20, 2006 9:04 PM CDT

Hey, everyone! Sorry I haven't posted lately. We've been enjoying life and the wonderful news that Brandon is NED. He has been on the Accutane for a week now and doing fine.

We have been very busy. This week is Vacation Bible School at our Church. I am teaching 1st & 2nd graders. Brandon and his cousin, Courtney, are in my class. Ashley and my mom have been helping me. It has been fun and exhausting! Bible School lasts from 6:00 - 8:30 each night!

Brandon has been spending his days swimming and playing with his cousins. Today we spent time at home. He helped me make iced tea and cupcakes. Mmm...Mmm...

Ashley, my Mom, me and Brandon are leaving Sunday for the beach. We will be going to Oak Island and staying at Steve and Shirley's beach house. My mom will be celebrating her birthday at the beach with us.

I uploaded new pictures...so take a look. Including a few from the room dedication. Enjoy!

Love,
Wendy

Wednesday, July 12, 2006

PRAISE THE LORD FOR ALL OUR BLESSINGS! Brandon is NED (no evidence of disease)!! The MIBG scan is normal. What an amazing day. I knew everyone would be anxiously awaiting our news. Thank you for your prayers. Our prayers have been answered! Dr. Maris & Dr. Mosse recommended that Brandon take an additional 6 months of the Accutane since he tolerated it so well. We will go to clinic at Brenner's once a month now and head back to Philly in 3 months. Brandon's port-a-cath can be removed from his chest! All wonderful news. Look where the Lord has brought us in only a year! (We met Dr. Maris/Dr. Mosse in July of last year when discussing options.)

Love to you all!
Wendy

Tuesday, July 11, 2006

Greetings from Philadelphia. We arrived safe and sound yesterday afternoon around 6:00 pm. We settled in at the RMH and had dinner here at the house. Today we went to CHOP at 11:00. Brandon had his port accessed and blood drawn for bloodwork. He then went to Nuclear Medicine to have the injection for his MIBG scan which is scheduled for tomorrow morning at 8:00 am.

Today was the dedication of the room at the Camden RMH. It was absolutely wonderful. Brandon was surrounded by so many new friends! Jack led the dedication. He gave a small speech before Brandon cut the ribbon to the room! It was very heartwarming to hear how Brandon has touched their lives. The room is beautiful! The plaque for Brandon is just inside the door on the wall as you enter the room. The plaque looks amazing. There is a section on top which explains Lincoln Financial and how they dedicated the room to their special friend, Brandon. Then there is a picture of Brandon (the one where he is holding the Eagles football & wearing his Eagles hat from last Sept.) Underneath the picture is the quote from the front of his website (Yesterday is....) Jack asked me to explain the significance of the quote. I love sharing those stories because they are special to me. Here is another amazing part of this story. The room that was sponsored by Lincoln just happens to be the room that we stayed in while we were there last year!! No one knew until we mentioned it! Brandon received several special gifts from some of the kind people at Lincoln Financial. A signed cap, a signed jersey, a collectible bank, and a Spongebob Squarepants gift bag full of goodies. A special guest was also present for the dedication - David Akers, the kicker for the Phildelphia Eagles!! Everyone involved went above and beyond to make this an unforgettable event. Brandon felt so special today. Thank you to everyone from Lincoln Financial, David Akers, and the Camden RMH. Thank you to our special friends, Jack, Kim, Jo Ann, Mike and Teddy. As I told several people, God put this together. The details of this story are very interesting - timing, place, people...I know that God brought it all together and we thank him for this blessing.

Tomorrow is the big day. Please keep Brandon in your prayers.

Love,
Wendy

Wednesday, July 5, 2006 10:17 AM CDT

Hope everyone had a safe and happy July 4th. We certainly made the most of ours. Last year we spent the 4th inpatient at Brenner's. Robyn and Keith brought over the fixins' from their cookout. We took Brandon - iv pole and all - to the rooftop to watch fireworks. Last night he said it was much better this year. I have to agree. We spent Saturday at Robyn and Keith's. Keith used his smoker to make chicken and ribs. Family and friends were there. We played stick ball and had water fights! Such a wonderful time. Yesterday Brandon and I went to the Lawnmower Parade in Cooleemee with Ashley. We met up with Robyn, Keith and the twins. We sat with Brandon's friends, Andy & Thomas. The boys collected lots of candy! Then, we spent time at home. My parents and Ashley joined us. We grilled hamburgers and hotdogs. Had lots of great food including watermelon and pie!! Brandon ate so well! We spent the HOT afternoon swimming - the water felt like bath water it was so warm. And to top off our Fourth, we took Brandon to the fireworks at Rich Park. We sat on the little hill by the tennis courts. Threw down a blanket and relaxed until the show lit up the sky around 9:30. Brandon kept ooo-ing and ahh-ing. He loved it! It was much better to be there in person, not at the hospital!

Brandon's eye infection went away, but Ashley and my mom picked it up. So it must have been some kind of virus or something. He ended up with a stuffy nose and sore throat for a few days. All is well now.

Its time for me to call on our dedicated Prayer Warriors. We will be leaving for Philadelphia on Monday, July 10th. It is time for scans again. I can't believe three months have passed this quickly. Please say extra prayers for Brandon. We pray for negative test results! We want NED! (no evidence of disease) Also, pray for a safe trip for us. My mom will be joining Michael and I for this trip. Please remember fellow NB fighters and their families. Especially Penelope with regards to a new treatment plan and James as he faces questionable test results.

Thank you to Wendy, Andy's mom, and their Church, Jerusalem Baptist, for the prayer quilt. It couldn't have come at a better time.

We will be attending a very special event while we are in Philadelphia. Our friends at Lincoln Financial will be dedicating the room at the RMH in Camden to Brandon on Tuesday, July 11th. We will attend the dedication. Brandon feels so honored! I hope to have pictures for you all when we return.

Again, next week is a very important week for our little one. May God continue to bless our family and we pray that His will is to completely heal Brandon's body and have it free of this disease. We truly believe that all things are possible through God. Look where we are today when compared to last year. He has truly blessed us. He has brought us here and believe me he carried us more days than I believe we walked. Let our son's amazing journey serve as a testament to the power and glory of our Lord. It is so hard sometimes for us to understand using our human brains. We search for answers and think with our minds looking for concrete information. But the greatest gifts we have been given are faith, hope and love. These are not "things" you can touch or hold...we just have to believe. Praise God for his promises and for his Son, Jesus Christ!

Hope everyone has a great week and weekend. We will be enjoying our time at home and preparing for our trip. I will post when we return from Philly.

Love, Wendy

Thursday, June 22, 2006 8:29 PM CDT

Greetings from the Koontz home!

Brandon went to the clinic at Brenner's today. Weight is up to 50 lbs!! He has grown to 48 1/2". Brandon has counts that are in the normal ranges!! WBC 6.6 HGB 11.6 PLT 172 WOW!! It now appears that he has some infection in his right eye. It was crusty this morning, oozing and red. They gave him some antibiotic eye drops.

We have had a great week. On Monday, Brandon's cousin, Courtney, came over to our house. They played with Brandon's toys and then they went swimming. On Tuesday, Brandon's friend from school, Andy, and his brother, Thomas, came over to our house. They played video games and swam. On Wednesday, Brandon went to lunch with Courtney and to Toys R Us. What a wonderful time! Brandon is loving his summer! Thanks to Courtney, Andy & Thomas for spending time with us!

Michael started working this week with his brother, Keith. He is still adjusting to it! Brandon and I have stayed busy so we don't miss him as much!

Summer spent at HOME TOGETHER enjoying softball, friends, cookouts, swimming....what a blessing!!

Love, Wendy

Tuesday, June 13, 2006 10:08 PM CDT

Summer vacation is here! School is out! I hate that Brandon missed the last two days of school because of his little hospital stay. We picked up his report card and he is now a second grader! First grade over!

He went to the doctor yesterday for a follow-up. Everything looks great. Lip is better. Lymph node is better. Weight is up to 49 lbs. (I am better, too.)

Just wanted everyone to know that we think we have gotten rid of strep at our house! We are looking forward to spending summer vacation together! Now we just need the rain to stop and the sun to come out!

Love,
Wendy

Friday, June 9, 2006 2:44 PM CDT

Quick update on Brandon...and me. On Wednesday night I started running a fever, my throat and ear hurt, and my lymph node was swollen. I knew I had to go to the doctor because of Brandon, so I went Thursday morning. I tested positive for strep! I made the comment to Brandon that I wondered if I got it from him. Well, today I talked to his docs at Brenners and guess what... His cultures were negative for Herpes Simplex (fever blisters) but positive for strep! Apparently, his lips were cracked from the accutane and the strep bacteria made its way in. And I was right...either I picked up the strep bacteria from Brandon or we both picked it up at the same place.

Last night he stayed with my mom & dad & Ashley. I was contagious for 24 hours - give the antibiotic time to work. So Brandon & I both are on antibiotics.

Fingers crossed that Michael isn't the next victim...

Right now I am staring at Brandon's fish tank. Nope, there aren't any fish in it. There's a frog. Brandon put big rocks in there and took some sticks and made a "ramp" for him to climb on. His name is Bully the Frog. Any tips on how to keep a frog alive in a fish tank are welcomed!

Michael is playing in a softball tournament this weekend and we were looking forward to going. I sure hope the antibiotics kick in so we feel like it! Brandon feels like a part of the team!

Remember we are heading back to Philly July 10th.

Love,
Wendy

Wednesday, June 7, 2006 7:58 AM CDT

Thank goodness the hospital stay was short. We are at home. Brandon responded very well to the 2 medicines they gave him. In fact, the marble-sized place on his lip shrunk to almost normal. It is crusty, however. His lymph node can now be touched. When we were admitted, it hurt just to gently touch it. Also, his fever went away Monday night. The 7 bumps/spots on his face also disappeared overnight. His eyes were puffy and oozing. That too stopped. They sent us home with Acylcovir (14 days) and an antibiotic (9 days.)

The cultures aren't back yet to definitely determine a diagnosis. What we know is that either the 2 medicines or Brandon's immune system/body or a combination of the three seems to be working. They know there was some type of bacterial infection due to how the lymph node appeared. They want to try to determine which bacteria to make sure he has the right medicines. Brandon has never had fever blisters before. It is possible that he had a fever blister or the cracked/peeling lips from the Accutane and a bacteria made its way in.

It was difficult to be admitted on Monday. Brandon cried. I felt depressed about it. But it was best for Brandon and as Dr. McLean put it "a minor setback" and "not tumor related." Also the NP from CHOP said they felt it was the best decision.

Our CHOP team notified us that Brandon is scheduled for disease evaluation on July 11 & 12.

Thank you for your prayers. Please continue to remember Brandon.

Wendy

Tuesday, June 6, 2006 9:15 AM CDT

Hello everyone!

This is Ashley, Wendy asked me post an update. Brandon is in the hospital (Brenners) for what the doctors think is an infected fever blister. They have drawn cultures to make sure this is truly what is wrong.

Brandon has been put on an antibotic to help fight the infection. He is expected to stay in the hospital anywhere from 2-5 days.

If anything changes we will let you know.

Thursday, June 1, 2006 4:36 PM CDT

Sorry its been so long since my last post. We have been busy! Lots of fun stuff though!

We are all still excited/happy from the wonderful Make-A-Wish trip. In fact, Brandon took some of his souvenirs to school to show his classmates this week.

And YES! I have finally uploaded the pictures!! Be sure to check out the photos on this caringbridge site and also the yahoo photo site.

Let's see...Brandon went to field day last week at school. I was so blessed to be able to go and enjoy it with him. This was his first field day - last year he was in the hospital. He had so much fun. He won a blue ribbon. He did very well to my surprise! I thought that since he hasn't been as "active" as the other kids that he might have a tough time. Nope. He won several of the competitions he was in! He even tied a 4th grader in one competition!

We have been going to Michael's softball games. Brandon loves being back at the ballpark with all the big boys! He hangs out in the dugout and cheers them on.

We had a cookout with my parents & Ashley on Memorial Day. We also swam all afternoon!

Brandon is loving swimming again. With the temp reaching 90 for a couple of days, we have been spending a lot of time in the pool! His cousin, Courtney, even came over to swim one afternoon!

This past Saturday the participants in a Motorcyle Poker Run/Ride came by the house to meet Brandon. They made our house a stop on their schedule. They were raising money for our family. We were so happily suprised to see someone we recognized - a little boy named Jacob who Brandon had played T-Ball and Flag Football with. His dad rode in the Poker Run. His dad was one of Brandon's coaches in football. (Football season was when Brandon first became sick.) We enjoyed talking to everyone. Brandon even went for a ride! Thank you to everyone who supported this event! God Bless You!

I received an email from a friend in Philadelphia. When we first went to CHOP to discuss treatment options last August, we stayed at the RMH in Camden, NJ. Each night an organization/group provided dinner for the house. One evening the Lincoln Financial Group provided dinner. Brandon befriended Jack, who has continued to keep in touch with us. In fact, he came to the hospital to see Brandon during his stem cell transplant and brought a special gift. Jack emailed me the other day to ask my permission for a special honor for Brandon. Lincoln Financial Group sponsored a room at the RMH and decorated it in the theme of The Wizard of Oz. They want to take it one step further and make it more personal. Jack said that Brandon had made such an impression on him that they want to dedicate the room in Brandon's honor. There will be a plaque at the entrace of the room which will read something like this:

"Yesterday is history. Tomorrow is a mystery. Today is a gift - that's why we call it the present. Dedicated to Brandon Koontz"

What an honor! I told Brandon about it and he was so excited. Thank you, Jack, for being our friend! Hopefully when we go up to Philly in July, Brandon will be able to see it!

Like I said we have had an amazing couple of weeks! Brandon has definitely earned all the wonderful blessings he has been receiving!

Brandon finishes his last cycle of Accutane tomorrow! Can you believe it? We are both excited and scared at the same time! When he takes the last pills Friday night, he will be without any type of "treatment"! We return to CHOP in July for scans.

I just want to end this post with this. It feels so amazing to live life. I find myself constantly thinking about all of the wonderful things we have been able to do each day with Brandon lately. Yes - there are still bumps in the road (like Michael's job...), but my heart is happy. The Lord is smiling on us. He is rewarding Brandon for his strength, courage and Faith. Thank you God for your blessings. Our family can face tomorrow because we know without a doubt that you are with us each and every step of the way. Praise be to God for all he has done!

PLEASE ENJOY THE PICTURES. I know there are a lot, but I just had to post them all!!!

Love,
Wendy
(Michael & Brandon, too)

Tuesday, May 23, 2006 7:44 AM CDT

Back to life....vacation over.

Brandon had a wonderful trip! Thank the Lord Brandon's fever broke early Monday morning before we left for Orlando. A limo picked us up Monday morning and took us to Charlotte to fly to Orlando. The flight was great. We left Charlotte at 9:50 and arrived in Orlando at 11:15. We picked up our rental car and headed to the hotel. Can you guess the first thing Brandon did? Yep, he hit the pool. Its been too long since he has been swimming! We spent the first afternoon at Downtown Disney - DisneyQuest. On Day 2 - Tues, it rained all day, which was nice because we did Animal Kingdom (the hottest Disney park) and Disney/MGM Studios. Brandon wasn't afraid to ride anything! He even rode Expedition Everest, the newest thrill ride at Disney. The ride (Mt. Everest) stands 199 feet high. Brandon had a special "meet & greet" with the Power Rangers at MGM. We stayed at MGM that night to watch the Fantasmic show (water, lights, lasers, Disney Characters.) It was wonderful. Day 3 - Wed, was spent at Universal - Islands of Adventure Theme Park. Brandon met Spiderman and he even had a special meeting with Spiderman, X-Men and Captn America. They made him an Honorary Superhero! Later that evening, we played Mini-Golf at Pirates Cove. Day 4 - Thurs, was Magic Kingdom. We did most everything in that park - including Splash Mountain. Brandon met all the Disney Characters. We watched the Parade. Day 5 - Fri, was Sea World. The Shamu show was amazing! Also Brandon loved a show called Pets Ahoy! - dogs, cats & birds perform a show. It was great too! Later that afternoon, we relaxed by the pool. Day 6 - Sat, we went to Epcot. It was 100 degrees!! We made it a quick visit! We caught Soarin' - where you "fly" over California. We visited the different countries at the World Showcase. That afternoon was also spent by the pool!! Day 7 - Sun, we went shopping around lunch. We spent the afternoon at a Disney resort. The pool had a waterslide and Brandon had the time of his life! He swam for almost 2 hours!! The temp was 96 degrees. Our flight left Orlando at 3:10 yesterday. We checked out late from the hotel and ate lunch at the airport. We were picked up in Charlotte around 4:30 by a stretch Expedition. Nice ride home! Make-A-Wish does an amazing job with all the extras they provide for the kids. The limo rides, we got special passes so we didn't have to wait in line, we could go right up to Characters without waiting in line, Brandon got free face paintings everywhere...Face painting - that is one of his new favorite things!

Ashley got sick around Thursday with the same virus Brandon had. She missed Epcot and swimming.

Jake was so excited to see us yesterday!

Brandon is back at school today. He started his last round of Accutane on Saturday. We go to clinic on Thursday for a checkup.

Thanks to Make-A-Wish for an amazing trip. Brandon had so much fun. It is like a spark was re-ignited! He is wide-open! He definitley deserved this vacation!

I will add pics as soon as I get my camera working again. Can you believe I dropped it on the concrete and broke part of it?? Ughh!
Wendy

Saturday, May 13, 2006 10:26 AM CDT

Good Saturday morning!

Brandon's Make-A-Wish trip to Orlando (Disney, Universal & Sea World) is scheduled for next week. We fly out (yes, Michael is flying) of Charlotte Monday morning.

Brandon's clinic visit went great on Thursday. But, on Friday, I got a call from the school nurse that Brandon had a headache and a temp of 99.9. He came home and the temp continued to climb. We ended up at clinic again. They drew blood cultures from his port. (They had just accessed it on Thursday for a monthly flush.) His temp was 100.8. He was given an antibiotic by IV just as a precaution since his trip is Monday. His lungs were clear so no need for a CT. Last night we had a few family and friends over for a cookout. Brandon felt fine. He jumped on his trampoline, played with Adam, played video games and ate well. Right before bed I thought I would check his temp again. 101.6!!! I called Dr. McLean. He said we didn't need to do anything. Just watch him and if he became sick acting or his fever went really high to call him back. We were so used to having to go to the hospital with a fever!! Brandon was stressing out about it...he teared up when he heard the number thinking he would be admitted to the hospital. Dr. McLean wants me to call this afternoon to check on the 24 hr culture. I talked to Tammy, Courtney's mom, and she said Courtney was sick last week with a virus. The symptoms sound very similar to Brandon's. She had a fever in the 101's for a day and a half. She had a little runny nose. Tammy also said half of Courtney's class was sick with the virus. Courtney & Brandon go to the same school....so maybe....I am praying it is just a virus that goes away today or tomorrow.

Today we are making sure Brandon is loaded up on OJ and chicken soup. The prayers will work much better, so please pray hard for our little man. This trip is such a blessing for him. We really want to see him go and have the time of his life.

Love,
Wendy

Sunday, May 7, 2006 8:16 PM CDT

***CHECK OUT THE NEW PHOTOS & THE NEW LINK BELOW ON THE CBS NEWS STORY!***

Having a great week! We've been busy...having fun!

We went to the movies to see Ice Age 2. Brandon's cousin, Ben, had his 1st birthday party at Rich Park this weekend. We went to Church. Softball season is starting. Brandon is enjoying school.

We are waiting to hear from Make-A-Wish about Brandon's trip to Orlando. We hope to go soon. We'll keep you updated.

Michael is still deciding what he is going to do about work, insurance...all the important stuff. Keep him in your prayers!

***NEW PHOTOS in the photo album and on the Yahoo Photo Site.***

Remember Brandon in your prayers. Pray for continued well-being and happiness! He starts his last round of Accutane in two weeks.

Love,
Wendy

Tuesday, May 2, 2006 2:22 PM CDT

Brandon is 7 years old!!

He had a wonderful birthday on Sunday. What a blessing to spend his special day together! Thank you to our family who all came out and birthday partied with us! We had a blast!

Can you believe Brandon chose a dog theme for his birthday party? He even had a puppy dog birthday cake! Although it was cloudy, the rain held off. We were able to spend time outside playing. Brandon got a trampoline for his birthday. You can't keep him off of it! He loves it.

On Friday, I took a birthday snack and treat bags to school for Brandon's class. I enjoyed being there and the kids seemed to enjoy the snack. Brandon felt special!

Can you believe our sweetheart won an award this week at school? He was awarded Citizen of the Month for Courage. He received a blue ribbon and we get to attend a special luncheon on Thursday. We are so proud!

No doctor appointments this week. Brandon is finishing up Round 5 of the Accutane this Friday.

Hope everyone has a great week. Keep us in your prayers!

Love, Wendy

Friday, April 28, 2006 7:44 AM CDT

Good Friday morning. Brandon is at school, Michael is at a meeting regarding insurance from his work. Jake is under the bed chewing on something he probably shouldn't be...

Brandon has had a great week. He comes out of school each day with a huge smile on his face and an interesting story to tell. He's been eating great. We went to clinic yesterday...counts & weight look good.

Sunday is Brandon's 7th birthday! We have a birthday party planned with family. He's excited.

Wendy

Saturday, April 22, 2006 2:26 PM CDT

WOW, I have alot of updating to do!

Easter was wonderful. The play at Church was so touching. We were all impressed at the great job everyone did. We were also very happy to see lots of our family there. My Grandmother, Tammy, Michael & Courtney, April, Tom, Carissa & Jackson all came from my Mom's side of the family. Robyn, Keith, Rylan & Ian, Steve & Tammy, Marc & Adam all came. What a wonderful Easter service surrounded by family and friends!! Brandon looked great in his costume and it was awesome to see him singing in front of the Church!

The Easter Bunny brought Brandon an Easter Basket full of goodies. We dyed Easter Eggs with three different egg dye kits: regular, tye-dye and glitter. We had several Easter Egg hunts at home.

This past week was Brandon's Spring Break from school. Brandon and I went to Oak Island with Tammy and Courtney. We left on Tuesday and just returned today. The weather was beautiful. We had so much fun! Tammy and I enjoyed the weather too much...we both ended up with a sunburn! Brandon & Courtney spent so much time on the beach. Courtney in the water and Brandon in the sand. We grilled out one night and even had a picnic lunch on the beach one day. We rode the Ferry from Southport to Ft. Fisher and visited the aquarium. We went to Wilmington and toured the Battleship. We played putt-putt and went out on the pier. It was such a blessing to see Brandon enjoying the beach. He never stopped smiling!

The sad news of the week is that the company that Michael worked at for 15 years closed this week. I talked to him on Tuesday and he said things didn't look good at work. They made the announcement on Wednesday. Of course this will have a huge impact on our family. Michael was the only one working and he carried the insurance on Brandon. I am so proud of Michael. He is keeping his spirits up and maintaining his faith.

We are so thankful for our Easter Holiday and our beach trip. Such a blessing! Please remember us in your prayers. Seems we have another hurdle in front of us with Michael's job!

Love ya,
Wendy

Thursday, April 13, 2006 7:21 AM CDT

God continues to bless our family! Brandon's bone marrow biopsy was clear, normal and as Dr. Mosse put it "healthy marrow." The MIBG scan shows improvement! The spot on his leg is much fainter/lighter on the scan. They were hoping for a stable scan - meaning no change, no progression. They were ecstatic that it showed improvement! Dr. Mosse was beaming with joy. She hugged me and Brandon several times and told us how happy they were to give us this news. I wish you all could see the joy that Brandon's medical team was feeling yesterday. It is so heartwarming. Hugs were going around everywhere from Pat (Nurse Pract), Dr. Mosse, and Dana (social worker.) It only makes us feel that much more blessed!

Brandon doesn't go back to Philadelphia for three months. He goes to clinic now every other week!!

The doctors feel the Accutane is doing its job since the scan had improved. It is a slow process for the Accutane to mature the neuroblastoma cells to normal nerve cells. But the proof was in the scan yesterday! They are still hopeful that the remaining faint spot will be going away over the next few months.

Thank you for your prayers! Praise the Lord for all of his love and grace. Thank you to our Heavenly Father for his blessings. Keep on believing and loving Jesus - he is truly our Saviour. God blessed us with amazing news the week of Christmas and now Easter. All in His time. How wonderful that we have these blessings to share with everyone on such special holidays.

We love you all! Have a great day....I know we will! Enjoy the day that the Lord hath made!!

Wendy, Michael and Brandon

Monday, April 10, 2006 9:37 PM CDT

Greetings from the Philadelphia Ronald McDonald House. They had a room for us! This house is wonderful! There are so many things here just for the children! Arcade games, pool, air hockey, tv's, Playstations, Arts & Crafts, outdoor playground, basketball...There's a Lionel Train village behind glass. The kids can push buttons to make things work in the village, like the trains go, the whistle blow, the billboards move, the ice cream shop work...THere's a room that is designed as a treehouse for them to play in. Brandon said it was the best hotel we had ever been to. He is enjoying himself here! Today, a couple of clowns from the Ringling Bros/Barnum Bailey Circus came to the RMH and performed a show for the kids. Brandon was chosen as one of the kids to be a helper in part of the show. He held a spinning plate on his fingertip and then on a stick. The local NBC news aired a small segment on the show. Brandon made it on the air. We watched the news at 5:30 and he saw himself on TV. He told his Papaw on the phone tonight that he was a superstar! Tonight after dinner, Brandon spent time dyeing Easter Eggs and decorating Easter cookies. He made 6 eggs and two cookies.

Today Brandon had his bone marrow aspirate and biopsy. We will know the results of the tests on Wednesday when we meet with the Doctors. He did a great job.

Just want everyone to know that we arrived safely and we are doing well. Please just keep us in your prayers. Wednesday is a big day. Test result day.

We love you and miss you!

Wendy, Brandon & Nana

Friday, April 7, 2006 7:24 AM CDT

Good Friday Morning. Brandon returned to school today. He has been sick this week with a cold/virus. He missed school on Tues, Wed & Thurs. Runny nose, cough, low-grade fever (99.4)... But you all know he is a trooper and he carried on like he was fine.

We were at clinic at Brenner's yesterday. His counts reflected whatever this virus is. His WBC dropped from 3.0 to 2.1 and his PLTs dropped from 148 to 109. HGB went from 11.1 to 11.5. Weight was down from 48 3/4 to 48. His weight seems to fluctuate up and down along with the Accutane schedule. While he is on the medicine, his weight drops a little. And then when he is off the medicine, his weight goes up a little. He's trying very hard to eat, eat, eat!

He had some leg pains this week. Chalked up to Accutane. I pray that is all it is. It seems he does have some pains each time he is taking the medicine and then when he comes off the pains are gone.

Brandon will be going to the Easter Egg Hunt at Church on Saturday. I am looking forward to taking him. He missed it last year for being in the hospital. He can't wait to see his friend, Madison. He thinks the world of her!

We will be leaving for Philadelphia early Sunday morning. My Mom is making the trip with me and Brandon. Michael will stay home to work. (and take care of Jake!) We have requested a room at the RMH in Philly. Hopefully they will have a room for us. They stay full!

So please remember us in your prayers this weekend and next week. Tests are coming up and they make me very, very nervous! I know we have done all we can by putting this in God's hands. He is in control and things will happen according to His will. Pray for a safe trip and negative test results!

I will take the laptop to Philly, so I will update each day. Please check in on us. Wednesday's results probably won't be posted until Thursday. I hope we will be driving home Wednesday afternoon after we meet with the doctors.

Love, Wendy

Monday, April 3, 2006 9:10 AM CDT

Good rainy, stormy morning to all!

Brandon is at school. I've been doing my "chores" this morning to stay busy. School is going great for Brandon. He is enjoying it more than I expected. Being at home and not having to be at the hospital or the doctor all the time is wonderful. Brandon plays constantly! It warms my heart to see him so happy.

The clinic visit this past Thursday went well. Weight up to 48 3/4! Almost 49 pounds! Counts looked good again. This coming Friday, Brandon will finish Round 4 of the Accutane.

Thank you to everyone who worked hard and volunteered their time at the Spaghetti Supper Saturday afternoon. Thank you to everyone who came out and supported us! We arrived around 6:00. We ate, chatted with family and friends, and Brandon played outdoors with his friends. All I can say is that the afternoon felt good. We were together as a family surrounded by so much love and support. Thank you!

Please remember us in your prayers. We will be leaving for Philadelphia on Sunday, April 9. Michael will be staying home to work. My mom will be making the trip with me and Brandon. Brandon will be having his tests repeated for disease evaluation. I pray that we can return home Wednesday night with a report of NED - no evidence of disease. God is able!

Also remember the other children fighting Neuroblastoma. There are so many whose lives and stories have grown close to our hearts - James, Courtney, Christi, Penelope, Morgan, Gage, Jared, Dominic. Remember the families of NB Angels who have earned their wings. May God give peace and understanding to all of the NB children and their families. May the NB warriors who are still battling be granted the strength and courage to fight on. Pray for a cure.

God Bless,
Wendy

Monday, April 3, 2006 9:10 AM CDT

Tuesday, March 28 , 2006

***Check out the Yahoo Photo Site - new pictures including School & Church***

Brandon returned to school today!! We were both a little nervous, but it went wonderfully (is that a word?)

This morning we drew a small heart on the palm of each other's hand with a red marker. We said that during the day if we missed the other or if he felt nervous or scared, we could look at our hand and be reminded of how much we love each other!

I took him into his class at 8:10 this morning. On the way in, we stopped and visited his Kindergarten teacher & assistant, Mrs. Stein & Mrs. Seamon. Their class knew who Brandon was so they welcomed him. Walking down the hall several kids from his Kindergarten class last year stopped to greet him. His new 1st grade classmates were very excited to see him too! He went right in and handled it like a pro. I couldn't have asked for this morning to go any smoother. I picked him up at 11:50. His teacher, Mrs. Stokes, dropped him off at the office on the way to the cafeteria. She told me that he had a good day. Brandon & I hugged each other and he said, "Mom, I had a GREAT day." He told me all about PE and the kids in his class. He talked about his morning work. He told me he really liked Mrs. Stokes. He said she is so nice. I don't think I've stopped smiling since we got home. It is so uplifting to see him enjoying the things other kids get to enjoy!

This past week marked 6 months post-transplant for Brandon! (3-21) Its hard to believe its already been 6 months! It seems like yesterday!

Clinic went good. Counts were fine. Weight was up from 47 1/2 to 48 1/4! Way to go, Brandon! Brandon had a nice treat this week on clinic day. His cousin, Courtney, was out of school so she spent the day with us. They played all over the clinic - from the toys in the waiting area to the playroom and they even made crafts with Emily at the Art table.

After the clinic visit, we went to Hanes Mall to get Brandon new tennis shoes. That was a treat too! The kids wanted to eat McDonald's for lunch, so we stopped in. They rode the carousel at the mall and had a cookie from the Cookie House. Of course we made a visit to the toy store....

Brandon spent Friday afternoon with his friend, Andy, from school. We went to see a movie. Andy's brother, Thomas, came along. The three boys had a blast together! They chose McDonald's for Happy Meals and we took them for ice cream.

We made our long awaited return to Church on Sunday!! It was wonderful! As we went in for Sunday school, everyone welcomed Brandon back with a huge round of applause. He felt so special. He got lots of hugs from his Sunday school teachers. His old pal, Madison, was there. It was so sweet - they picked up as friends like they had never been apart. I was a little worried about how that would go. Brandon read part of the lesson along with Madison. My Mom, Dad & Ashley were at Worship with us. Brandon was so proud to go up to Children's Church. Of course, he walked up with Madison. He also got to ring bells in worship - instead of the choir singing, they did "The Old Rugged Cross" with bells. The children in the Church got to chose their bells first and then the adults. He enjoyed playing the bells. Also, he had practice for an Easter program that the kids are doing on Easter Sunday. He loves singing and he gets to do it again! In the car on the way home from Church, we had to listen to the songs especially his favorite one, "Remember Me." I can't wait to see him standing in front of Church again singing!

Our Sunday School class will be holding a Spaghetti Supper at the Church (Center United Methodist Church) on Saturday, April 1 from 5 - 7 pm to benefit our family. We will be returning to Philadelphia April 9 - April 12. The proceeds from the supper will definitley be a blessing with the trip coming up! We will be able to attend this event, which is so wonderful! Michael has to work on Saturday, but we plan on getting there as soon as we can. We are looking forward to being there and seeing friends and supporters.

I can't explain how great this past week has been. Brandon spending time with friends, Brandon returning to school, our family going back to Church, shopping at the mall, going to the movies, Brandon feeling great....Don't wake me up if this is a dream. I want to enjoy every second of this!

Let me go get Jake out of the kitchen. It sounds like he's up to no good....

Love, Wendy

Monday, March 20, 2006 10:05 AM CST

Happy Monday morning to everyone!

We had another good clinic visit this past Thursday. Counts are great. Weight is maintained.

The week was good. We celebrated Michael's 35th birthday! His birthday was Saturday. Lucky him - his work gives him his birthday as a paid holiday! So he had the day off (he usually works on Sat.) It was nice to spend his birthday at home as a family. My last 2 birthdays have been spent away from home - once at Brenners and then in Philly.

I can't believe that this is the last Monday with Brandon at home before he goes to school next week. The countdown has started. I have to admit I am a little sad - I love spending time with him! But it is also exciting - returning to school!! Please say a prayer for a smooth transition!! I am not sure how he is going to do with getting up early. In fact, this morning I had to wake him at 10:30 so he could take some medicine. He is currently eating breakfast!

Just a reminder: we will be returning to Philadelphia for disease evaluation (scans, tests) April 10 - 12.

Hope everyone has a great week.

Wendy

Monday, March 13, 2006 9:30 PM CST

Greetings from the Koontz house!

The clinic visit Thursday went great. Counts are back up! Weight is up to 47 1/2! Brandon has grown to 48" tall now!

I've had a rough week this week. The dentist did some work to my wisdom teeth...removal! It really put me down! I'm feeling a little better! Thanks to my wonderful husband and son who took extra care of me! I just love my boys!

Brandon had an awesome weekend! His friend from Kindergarten, Andy, came over Saturday and they had a blast!! It was so great to see them play like they never missed a beat! You couldn't tell they hadn't seen each other in a year & a half! On Sunday, Brandon's cousin, Courtney, came over and played. They always have fun together! Brandon felt very special this weekend with his buddies coming to visit.

Congratulations to our friends Laura & Nathan - they welcomed their first baby this weekend! Baby boy Seth!!

Please continue to remember us in your prayers. And also remember all the other children fighting neuroblastoma. Pray for a cure.

Have a great week!

Love, Wendy

Monday, March 6, 2006 9:08 PM CST

We had a good week at home. A few moments of worry though...

Michael broke a toe.

Brandon had some pains.

We got a little worried about Brandon at the first of last week. He started complaining with his ankle hurting and his stomach. We went to clinic on Thursday. We spent time there with Dr. McLean. Brandon's WBC dropped from 3.1 to 1.8. Dr. McLean felt that the drop and the pains were related to the Accutane. Brandon had the same thing happen with the first round of the medicine. Since the visit to clinic, Brandon hasn't had anymore pains. We are thankful for that!

Brandon and I went to school today to see his teacher again. We met the new principal. We also spent time with the school nurse preparing for Brandon's return on the 27th!

Brandon went to the Church basketball game Sunday afternoon to see his dad play. He had fun. He really gets into the games now! During halftime, he went out on the court with his dad and the rest of the team. He was so proud. Several of the guys greeted him with high fives and treated him like one of guys - like a "big" boy. It made him feel so good.

We go back to clinic on Thursday. Brandon will finish up this 3rd course of Accutane on Saturday. I hope his blood counts are back to the way they were! I like the 3.1 better! I was so excited about the numbers prior to this last visit.

Hope you like the new look of the home page. I did some work on it this weekend. I also added new pictures to the photo page and to the Yahoo Photo Site. I tried to make the Yahoo site easier to view by changing the names of the albums to be dates. You can now go to the end of the albums for the latest pictures posted. This way you won't have to look through all of them to find the new postings. Hope it helps!

Wendy

Saturday, February 25, 2006 6:54 AM CST

Clinic went well this week. Weight is up to 47 1/2. The counts are wonderful, even close to normal. Praise the Lord!!

WBC 3.1 (Norm starts 5.0)
HGB 11.0 (Norm starts 11.5)
PLT 133 (Norm starts 150)

Very good job this week, Brandon!! In fact, Dr. McLean said that since Brandon's counts are good that we can skip a week of clinic during the 2 weeks he is off of the Accutane. A week without a Drs visit? We won't know what to do!!

We've been having a great week so far. The clinic visit set things off right. We made some Easter crafts at home yesterday. Brandon's been playing basketball outside, chasing Jake around the backyard, playing Army in the house and outside all dressed up in his gear....just being a boy!! Its been so fun! Michael, Brandon & I went out to eat this week at a restaurant in Winston. It was so nice. It was our special treat this week. All the small things mean so much!

On Thursday, we went to the school to spend some time with his teacher, Mrs. Stokes. Brandon worked on some assessments/testing with another teacher while I spent time talking with his teacher. I feel so great about Brandon being with her. She was very interested in Brandon and understanding him and what he has been through. She is very willing to do everything she can to make this transition as easy as possible for Brandon. It just felt like she cared about our little one. I think she is going to do a great job with all the special and unique things that go along with Brandon. Brandon got to see his classroom. He had written a list of questions to ask Mrs. Stokes. She spent time with him going over his questions and showing him around the room. She was very kind and caring in dealing with Brandon. We plan on going back on the 6th just to visit again. Brandon can spend some more time with Mrs. Stokes and become more familiar with the classroom. I am going to meet with the School Nurse and the Principal at that time. The plan right now is for Brandon to return to school for half days starting on March 27th. Wow!!!

This afternoon Brandon is going to get his hair trimmed...no he doesn't have enough for a real haircut, but it is time to trim around the ears, the neck....The hair that he does have is growing over his ears. We are going to see Melissa to have his first haircut since December 2004, when she gave him his smooth head after his hair starting coming out from the chemo. I'll take some pictures. (of course!)

Well, Brandon starts course 3 of the Accutane today. I can't believe he's already on #3. I also can't believe he is almost 6 months out of transplant! 3 1/2 more weeks and he will be 6 months out! We will be doing a test to check his immunities to see what he still has of his original immunities. They can check to see if he still has the immunity to the chicken pox since he originally got the vaccine at Age 2. Brandon can't be re-immunizied with the vaccines that he got as a baby until he is one year post transplant.

Since I am up extra early at the Koontz house, I will get busy with my household chores. This way Jake and Brandon won't be messing as I am trying to clean. They can wake up to a clean house and then do their damage!

God Bless! Wendy

Monday, February 20, 2006 10:19 AM CST

Good Monday morning to all. We woke up expecting to see snow...but the weather man was wrong once again! Bright sunshine! Its even nice enough that Jake is outside for the day.

Brandon is doing great. He's watching the Care Bears eating Doritos and drinking chocolate milk. Can't get any better than that, huh?

Clinic on Thursday was good. The cortisol test showed normal! Great! He doesn't have to start a new medicine. His counts were great. In fact the WBC made a move up to 3.0 and HGB remains in the 10's while the platelets continue to rise to 116. Weight was maintained. He is still on his "off" week of the Accutane. He starts back this coming Saturday for Round 3.

We got the call from Philadelphia. We are scheduled to return on April 10, 11 & 12 for disease evaluation/scans/tests. Please pray hard that the tests will be negative and Brandon can finally enjoy NED (no evidence of disease.)

We go to meet with Brandon's teacher on Thursday to discuss his return to school which is planned for the end of March.

Yesterday was an emotional day for me for several reasons. Rylan & Ian were being christened/baptised yesterday at our church. Michael & I were named Godparents of Ian. I can't explain how it is hard for me to hold Ian, this precious new life, and deal inside myself with the past year's experiences and the battle that Brandon, my own precious child, is fighting. Also, Brandon couldn't attend church with us. The drive up to Church was hard for me. Brandon and I did this drive every Sunday for 3 years, it was hard to go without him. I haven't been to Church since August b/c of Brandon's treatments/fear of the flu/being in Philly and it was very emotional to see all of our friends at Church. Everywhere I looked I had memories of Brandon before he was sick. Christmas plays, Preschool graduation, Singing programs, Children's church...Sometimes it is hard to go back to the time when we didn't know of this beast of a disease. It sometimes makes me start the Why questions again. I don't like being in that frame of mind! Emotions just flooded me yesterday. Michael was there to be the wonderful, supportive husband he is. Even though it was hard for me, I wouldn't have missed it for the world! We know how much of a blessing Rylan & Ian are and how much of a blessing our church family is. Soon we will be making new memories at church. We will have memories of Brandon, Ian & Rylan at the Christmas plays, singing programs and Children's church. Praise the Lord!

Please remember us in your prayers! Hope everyone has a great week!

Love, Wendy

****Check out New Photos in the Photo Album & on Yahoo!****

Sunday, February 12, 2006 4:47 PM CST

***NEW PHOTOS ON THIS SITE AND THE YAHOO SITE***

Hey everyone! Things are fine at the Koontz home.

We are just a little jealous of all the snow that we aren't getting but everyone from Virginia up is. Hope our friends in Philly are enjoying the white stuff. Brandon would love a big snow! We had some flurries today, but that was all.

Brandon just finished his 2nd cycle of Accutane. No leg pains this time. His face still peeled and so did his ears, but the lotion helps and at least it doesn't hurt him.

We went to clinic on Thursday. Counts are looking good - the same as they have been WBC 2.4, HGB 10.2, PLT 101. Weight is good 47 lbs. Next Thursday we have to go early for his cortisol test. It is a fasting test, so he can't eat before we go. It is simply a blood draw so it should be fairly easy for Brandon.

Talks of returning to school are starting. Can you believe it? I don't even want to think about it! We've been together 24/7 for almost a year and a half!

Please continue to remember Brandon in prayer. Pray that this current medicine will do its job and he will be free of this disease! Also pray for all the other brave children fighting neuroblastoma. They are true warriors!

We love you all!
Wendy

Thursday, February 2, 2006 10:39 AM CST

Greetings from North Carolina. Sorry I didn't post while we were in Philadelphia. First let me get to the news that everyone is waiting for. Brandon's bone marrows are still normal, Brandon's CT scans are normal, and Brandon's MIBG scan is the same as December. So, we are excited to know there is nothing new to report. Dr. Maris said he was very pleased. We go back in 10 weeks to repeat tests. The Accutane takes time to work. It isn't something that we would see a dramatic improvement after only one course of the medicine. So, when we go back in 10 weeks, Brandon will have completed 3 courses of the Accutane.

The only new thing to report is that Brandon's cortisol level appears to be low. Dr. Mosse said that it is commonto see this with Neuroblastoma and the intense treatments that Brandon has had. Since Neuroblastoma originates in the adrenal glands and the adrenal glands produce cortisol, it only makes sense. Cortisol helps with the body's response to stress. For example, if he gets sick, a low cortisol level would mean his response to the illness could be delayed. Dr. Mosse is sending Dr. Mclean the information on the blood tests she wants done to verify this. They will decide then if they want to put him on an inhaled medication (once a day) to help his body.

We had a little scare on the way up to Philly on Sunday. I had spent part of the day Friday with my aunt Tammy (Brandon's cousin Courtney's mom.) Sunday morning I woke up with a sore throat. We were driving up to Philly and Tammy called to say she had gone to the doctor because she had starting running a fever of 103 - 104 on Saturday and was having trouble breathing. She tested positive for the FLU!!! I had a flu shot, Michael had a flu shot, but Brandon couldn't get one because of his Stem Cell transplant. Monday I talked to Brandon's medical team at CHOP and basically they told me to stay away from Brandon, practice good handwashing and rest so I could get better. They said he was probably already exposed to whatever I had. Although, I am happy to say I don't think it is the flu unless the flu shot just weakened my symptoms. I have not ran a fever, but I did have some yucky days. Thank the Lord Brandon has not shown any signs or symptoms and neither has Michael. But it was definitley a scare! Brandon and I have gone a year and a half without being sick!!

We got home last night around 9:30. Brandon couldn't wait to see Jake. On the way home in the car he planned how he would surprise Jake when we got home. They played and played. Finally around 12:30 they both gave up and went to sleep. It looks like Jake grew while we were gone! He is such a cute little beagle! They are happy to be back together.

Thanks for all your messages. It is very heartwarming to read them. And as you all know - thank you so so much for all your prayers. It's good to be home!

Love,
Wendy

Friday, January 27, 2006 4:04 PM CST

Happy Friday everyone! Brandon just came inside from riding his bike. How great it feels to say that! To know that he is doing normal kid things!!

We've had a great week. Brandon had nice surprises this week. A very generous individual gave Brandon 4 Suite Tickets to the Bobcats Arena to see WWE Monday Night Raw this past Monday. I have loaded pictures in the Yahoo Photo Albums. Also, he had a surprise phone call from two of the wrestlers from the WWE. He felt so special that day!

We went to clinic yesterday. Great visit! Brandon worked hard on eating this past week and it showed in his weight. He was up from 45 1/4 to 46 3/4! He was so proud. Before he got on the scales, he said a little prayer.

His counts were:

WBC 2.6
HGB 10.2
PLT 98

Looking good!!

So he starts the acne medicine tomorrow for his second two week course. We will head to Philadelphia Sunday. Tests are scheduled: Bone marrow aspirate and biopsy on Monday, CT Scan on Tuesday, and MIBG Scan on Wednesday. On Wednesday after the scan, we meet with the Drs. to go over the results.

Keep us in your prayers this weekend and next week. Pray for a safe trip. Pray for negative test results. Pray that God's will be done. Pray that Brandon continues to feel as great as he does. Jake will be staying with Nana, Papaw & Ashley - so pray for them that Jake doesn't drive them crazy!!

****Be sure to check out the new photos on the YAHOO Photo Site - New Albums are "Blue-Haired Rock Star", "Twins", "Naptime", and "WWE"****

I'll be updating while we are in Philadelphia. Take care everyone.

Love,
Wendy

Sunday, January 22, 2006 7:23 AM CST

Good Sunday Morning to all!

What a great week we had!! Brandon's leg pain went away. His skin has cleared up. Brandon was able to do some more normal kid things this week. His cousin Courtney came over and spent the day with him on Tuesday. They played all day! He was so happy. Then on Wednesday, we took both of them to the movies (12 noon) to see The Chronicles of Narnia. What a blast! He ate popcorn and the movie was great. We then took them out to eat. I can't tell you all enough how much fun WE all had! Thursday I took Brandon by Party City to pick up some party supplies for the Superbowl. You all know how much he loves football. We had a good time in that store! He even picked up some Valentine's decorations. Simply going in a store and letting him pick out his own things is such a joy! It's been so long!

We went to clinic on Thursday.

WBC 2.4
HGB 9.4
PLT 89

But the bad news was Brandon had lost one pound. He made promises that he would try harder to eat more. They are pleased with the variety of foods he is eating, but he just isn't eating enough. I have to say I am very proud of him. He is eating more at meals and having more snacks. For all of you who know how picky Brandon is, you can appreciate this: He ate a hot dog, pasta salad, scrambled eggs and even tried a chicken biscuit! We are talking about a kid here who limits himself to chicken nuggets, steak and fruit! Way to go Brandon!

Jake is also doing better. The housebreaking is improving. He is also calming down some. Guess he is growing up a little. Not nipping as much. I sometimes see Brandon lean down and pet Jake and he whispers "Hey Buddy. You're my best friend. I won't ever let you go." How sweet!

Make-A-Wish came out to meet Brandon yesterday. It was such a nice visit. Brandon's wish grantors are really nice. One spent time with us filling out paperwork and the other spent time playing with Brandon. They also brought him a gift. He made his wish - a trip to Disney. They really treat the kids extra special. We don't know all the details yet, but it sounds like Make-A-Wish wants this trip to be unforgettable!

Hope everyone has a great week. Next Sunday we will be leaving for Philadelphia. Tests again.... Please remember us in your prayers!

Love, Wendy

Monday, January 16, 2006 9:03 AM CST

Good morning everyone. I was checking Brandon's website and realized that the journal entry I posted on Friday, Jan 13th didn't post. What a bummer! I just knew you all were getting the latest update. Let me just try this again.

CONGRATULATIONS, Robyn & Keith!! Proud parents of two new baby boys! The boys were born on Friday, Jan 13th around 8 am. Both boys and mom are doing great. In fact they are scheduled to come home today. Baby A weighed 6.7 lbs and they named him Ian Baity. Baby B weighed 5.2 lbs and they named him Rylan Keith. We took Brandon to see them Friday before there were too many visitors. He is so amazed at how small they are. I believe it is the first time he has seen one that small. He held the boys. We all thought Brandon would be jealous since he is so close to Robyn & Keith, but he is doing an amzing job. He is a great cousin to the boys already. He is so gentle and loving when he holds them.

We went to clinic last Thursday. Counts were better:

WBC 2.9
HGB 10.2
PLT 63

I was happy to see the numbers back up a little. I was worried last week when platelets dropped from 70 to 55. Brandon started complaining with leg pains Wed & Thurs. I was scared, but talked to the doctor and reminded myself of what Morgan's mom had posted in the guestbook. The Accutane can affect the calcium levels which can cause pains. I am praying that this is all it is. In fact, Brandon was in tears when Jake jumped on his leg Friday. He finished his first cycle of medicine on Friday. This weekend he hasn't complained about his legs. Hopefully it is the medicine and that is all it is!!

Brandon had his first sleepover in .... I can't remember its been so long. He stayed at Nana, Papaw & Ashley's Saturday night. He had so much fun. Ashley is like his sister and they enjoyed spending time together. I kept waiting for him to call to come home, but he didn't.

Our Church held a Saturday morning breakfast with the proceeds coming to our family for ongoing medical expenses. What a blessing! Thank you all for the hard work! Tammy (Courtney's mom) invited me to go with her. It was the first time I have been able to attend. Michael was home to keep Brandon (they slept!) It was so nice to see everyone and to eat the great food!!

Yesterday, (Sunday) we took Brandon to the Church basketball game. Michael played. The game was at 1:30. Not many people were there, plus the gym is very big, so we kept Brandon sort of secluded. He had a blast. He cheered for the team. It was good to see friends at the game too!

We go back to clinic on Thursday. I'll post an update then. Thanks for everything! Keep us in your prayers.

Love,
Wendy

Wednesday, January 4, 2006 9:01 AM CST

Good morning everyone and HAPPY NEW YEAR!

I just wanted to post an update to let you know that we are doing great. I will probably post about once a week unless something new arises.

Which something new did arise yesterday. I received a phone call from Philadelphia. They want us back either the end of January or the first of February to do repeat testing. Nothing is wrong. In fact, they said that with someone who responded as well as Brandon, the NANT Organization (New Approaches to Neuroblastoma Therapy), wanted to do testing to confirm the great results. The Drs. also say that knowing how agressive Neuroblastoma is that it is a good idea to test early so we could catch anything if it was coming back. I am fine with that. The Drs. also said they are still very optimistic that Brandon's tests will either be the same or improved (the teeny tiny spot.) Still though, as a parent, I can't help but worry and be nervous about the new tests. I will let you know the definite dates of when we are going back.

Brandon has been taking his medicine now for 5 days. The skin on his face is blotchy red and it is peeling. I am putting lotion on it at least 3 - 4 times a day. The lotion is starting to burn. He has 9 more days to go and then he gets 2 weeks off of the medicine. Then he goes back on it. Remember the cylce is 2 weeks on - 2 weeks off.

Anyone looking for a new pet? Maybe a stubborn beagle?? Just kidding - Brandon would never let Jake go. But boy have my hands been full with a new puppy and a stubborn one at that. He has become hard to housetrain, he chews everything. He's smart though. He understands, but he wants to do things his way. He loves shoes. He's been taught not to chew on them. So he got smart about it and instead of dragging the shoes from the laundry room into the living room to chew on them, he will disappear and you will find him hiding in the laundry room "loving" on the shoes. You know, he acts like he is only laying his head on the shoes for a nap that he isn't actually chewing on them. But he doesn't realize that we can see those puppy teeth marks on the shoes. Its so funny!

Hope you all like the new home page picture and background. Be sure you check out the photos on this website (the three). I also changed those.

Remember us in your prayers.

Love, Wendy

Friday, December 30, 2005 7:25 AM CST

DAY 100

Hello everyone. Hope you all had a great Christmas. We did. That boy got way too many gifts as usual. But he had so much fun opening gifts, seeing family and waiting for Santa.

Yesterday we went to Brenner's to meet with Dr. McLean as Dr. Mosse had requested. We thought it would be a short visit - get counts, meet with the Dr. and get the prescription for the Accutane (new medicine.) We were WRONG! Can you believe we arrived at 9:15 and left at 2:15???? 5 hours?? They were so busy plus they were short one person in the clinic.

But on a good note, we were able to see James and his family. He is home from NY for a short while. They return next week for more treatment and scans too. Please say a special prayer for James and his family. He looks so good! He is 3 years old. His hair is thicker than Brandon's, but just as dark. Such a cutie. And it was so great to talk to his mom!

Well, our difficult day didn't end there. Who would have thought finiding a pharmacy to fill the prescription was going to be so fun. We went to CVS in Mocksville, where we always go. They didn't have it. They called Wal-Mart and Fosters and they didn't have it. They called the CVS in Advance and they didn't have it. The Pharmacist asked me if I wanted her to try anywhere else, and I knew of a pharmacy in Winston that had everything, but they don't take our insurance. And the prescription was VERY VERY expensive. She decided to try Eckerd in Advance first and thank the Lord they had it! So we drove back to Advance and waited on the prescription. I turned it in and we looked around the store. Then they called us over the speakers to come back to pharmacy. They just wanted to discuss the co-pay on our insurance before they filled it since it was so expensive. So finally they went ahead after making me aware of the price and filled it.

So we didn't get home until around 4:30. What a day!!

But Brandon was a trooper as always. When we finally got home, it didn't take him long to settle in to playing with his new toys and of course Jake.

So we are starting the new medicine today. Please pray that it works to do its job to clean up the small amount left and help keep it from coming back so soon! Please pray that it doesn't cause too many side effects.

Well, today is Jake's turn to go to the doctor. Brandon will be going to the vet for the first time to see how Jake's doctor visits go. It should be exciting!

Love you all,
Wendy

Thursday, December 22, 2005 7:23 AM CST

Start rejoicing! Praise God! Glory to God!

Brandon's Drs. were able to deliver the best Christmas gift they could yesterday. Terrific, terrific news as Dr. Mosse put it. Normal test results were given to us yesterday. Prayers were answered (as if we doubted!) Faith and hope have been victorious!

The bone marrow biopsy was NORMAL. Praise the Lord!! The CT scan was NORMAL. Thank you Lord!! The MIBG scan was basically normal. Hallelujah!! Dr. Mosse said we are so very close to calling it remission!

Let me explain the MIBG. There is one spot still showing on his right leg. It is so teeny tiny that the radiologist wanted to call the scan "normal." Dr. Mosse and Dr. Maris explained that the spot should be going away. Remember the MIBG stays in his body up to 6 months. He still has 2 months to go. Plus the scan we did right after transplant was 85 - 90mproved, but there were still spots lighting up in his pelvis and leg. So the scan has improved even since then. And now there is this teeny tiny place left. Which as I said they believe is either dead, dying or will be gone soon.

Now, Brandon does not go back to Philadelphia for THREE months!! He goes to Brenners each week now for counts and to monitor him when he starts the new medicine.

The new medicine: Yes, they are starting Brandon on the acne medicine now. I am so excited that he can move forward and start this medicine! We learned about the medicine last year, but as things progressed, we weren't sure we would make it to that step. But Praise God, here we are! The acne medicine when given in larger doses than given to treat acne does an amazing job to cancer cells. This medicine attaches to any neuroblastoma cells that might be forming and causes them to "differentiate" into normal nerve cells. Unbelievable! This is a step to help keep this disease from coming back so quickly. Neuroblastoma is known for relapsing. Brandon will be on a cycle of taking the medicine 2 weeks and off 2 weeks. He will do this for 6 months.

Now back to the rejoicing and celebrating! Oh, GOD is so good! God is so great! I hope that each and every one of you who has prayed hard for our little boy can truly get a blessing out of this Christmas Miracle as we like to call it. We know that Jesus' birth was the greatest miracle and we are all celebrating him this season. But thanks to him, this Christmas is extra special. He blessed us with Brandon's healing. I'm not the best with words and it is so hard to get out to you how this feels. I can't put in words the joy, the gratitude, the love that we are feeling today. I feel like we made it to the top of the mountain and the road has been so hard, but with God leading the way and showing us his Grace, we can now see the valley below. He lead us through the valley. He held our hands, he carried us. And oh how beautiful it is to see what he has done. We are still traveling on this road, but God has granted victory to Brandon today. No, we do not know what tomorrow will bring, but we are ready. We trust in the Lord, we love the Lord, we put our faith in Him. And it is with Him that we can find our comfort and our victory.

Merry Christmas everyone.

Wendy, Michael & Brandon

Monday, December 19, 2005 5:29 PM CST

DAY 89

WBC 3.3
HGB 10.5
PLT 72

Well, we just finished dinner (that is everyone except Brandon - the slowest eater on the planet.) We ordered pizza tonight hoping he would eat an entire pizza. So far, he's only on slice #2. But he's still chewing and chewing and chewing and chewing.

Yesterday we drove up to Philly and got settled in the house. This house is more beautiful than the first. This one is three levels instead of two. We even have a rooftop deck! Three bedrooms and 1 & 1/2 bath. Plus two tvs to keep the boys entertained and not arguing! The drive took longer than we thought. We were stuck in traffic for 45 minutes in Alexandria, VA (right outside DC.) So the drive took 9 hours! But we have to be thankful that we had gorgeous weather for the drive. We were afraid we might run into bad weather, but it was great!

Today we went to the clinic for blood counts and blood draws for various tests. Brandon had his bone marrow aspirate and biopsy. They put him to sleep to have the procedure done. He has two bandages on his hips where they drew the bone marrow. He has done great this time. Not complaining of pain. Tomorrow he has a CT scan of most of his body. He will have more blood draws and a kidney test. Plus he will get the injection for the MIBG scan on Wednesday. His day starts at 8:15 and we should be back at the house by 1:00 if things go according to schedule.

Keep praying hard for the best test results!! Wednesday at 10:30, we meet with the Drs. to go over all the test results. By the way, the echocardiogram was normal. I forgot to post that for you all!

We love you all. Goodnight from a cold and windy Philadelphia.

Wendy, Brandon, Michael & Nana

Monday, December 12, 2005 1:06 PM CST

DAY +82

WBC 2.7
HGB 10.8
PLT 60

What a day! We went to Clinic at Brenner's today. Brandon had two tests scheduled. His first was at 9:00, so we thought we would be home by 12:00. Wrong! His hearing test went as scheduled, but the echocardiogram was delayed. They were backed up on appointments. We left at 8:15 this morning, but didn't get home until 1:30!!

Hearing test shows more damage than the last one. Only his high pitches are showing problems. The left ear is worse than the right ear. The hearing damage is due to one of the chemotherapies he had. Right now we don't have to do anything about his hearing. Just make sure background noise is minimal when he is trying to do school or when concentrating on a conversation.

We won't know the results of the echo until tomorrow. His echo's have been normal in the past, so we are hoping for the best. They check his heart because one of the side effects of one of the chemotherapies is damage to his heart.

Well, now we are gearing up for the trip to Philadelphia. We will head back to the Children's Hospital on Sunday, the 18th. They have 3 days of tests scheduled. This will be disease evaluation....time to see what the Transplant and MIBG treatment have done to this disease! Please pray hard for good test results! We want to hear that the Neuroblastoma is gone!! As I mentioned, Brandon is having several tests - MIBG Scan, CT Scan, Bone Marrow Aspirate & Biopsy, Thyroid test, Kidney test... We will meet with Dr. Mosse and Dr. Maris on the last day - the 21st to discuss all of the results. We are praying that they will give us the best Christmas present this year!!

A huge thank you to our Church Choir for coming to our house on Sunday. They did their Christmas Caroling and included us on their trip! It was so great to see everyone! The songs were wonderful. Thank you for singing Brandon's favorite, The Little Drummer Boy. He enjoyed playing the bells with you all too! I can't say enough! It truly touched our hearts and made Christmas special! We love you. (And thank the Lord the weather was nice so Brandon could go outside to see & hear you!)

Again, please remember us in your prayers and say a special prayer for a safe trip to Philadelphia and most important for negative test results. We have put it all in Gods hands and he leads us everyday. In times like this it is easy to be scared and worried, but in our hearts we know that we are safe in his arms. We have our faith in the greatest doctor and healer there is - our Heavenly Father. Please pray for continued strength for our family. Times are tough, but we are blessed in so many ways! We have family and friends, and BRANDON!! He is such an inspiration! We love him so much.

Just wait until you see his hair - or maybe I should say his dirty head! That's what it looks like!

Hope everyone has a great week!

Love,
Wendy

Saturday, December 3, 2005 7:02 PM CST

Safe and Sound in NC tonight. We made it home around 1:00 today. The drive was perfect - we never had to stop in a traffic jam anywhere!

Brandon is already getting ready for Christmas. We took out some of our decorations and Michael got our tree. Maybe tomorrow or Monday we will work on decorating - we are kind of tired today after the drive!

I can't tell you how great home feels!! How great it is to see Michael and my Dad and Jake! Jake has grown so much. He is cuter than ever. Michael and Dad are cuter than ever, too.

Guess where Brandon is right now.....yep, playing his XBOX. We didn't take it and I think he missed it too!

Thanks to everyone for the prayers and thoughts for our trip home. We love you!

I probably won't post everyday now that we are home, but I will post after appointments and when we go back to Philly. Just check back in on us!

Love,
Wendy

Friday, December 2, 2005 1:12 PM CST

DAY +72

Radiation is over!! Brandon finished today!! And can you believe that yesterday and today he did not get sick at all! Way to go Brandon!!

At the end of his treatment today, the technicians gave him a gift bag. He got a Hot Wheels car, a Spiderman motorocycle, a sweatshirt and Spiderman web shooters. They made his last day so special!!

We are hanging out this afternoon, packing and loading the car later. We will head home in the morning. HOME - we can't wait!!

We went riding last night in the city to see the Christmas lights. On Nov 30, they turned the lights on City Hall which is very pretty. We rode around looking at all the expensive stores that decorated their windows. We saw the Liberty Bell again. We listened to Christmas music on the radio and sang. It was nice. Brandon really likes The Little Drummer Boy and Feliz Navidad.

The snow is due to arrive late tomorrow and into Sunday. Hopefully the drive home will be smooth. We should miss the bad weather. Please say an extra prayer for a safe trip home tomorrow!

Love ya,
Wendy

Wednesday, November 30, 2005 3:01 PM CST

DAY 70

Went to clinic today. Counts are fine. Brandon didn't need any transfusions. We went to radiation and grabbed lunch on the way home. Brandon got sick. He's fine now. He's been hanging out with Ashley.

Just 2 more days to go.....

***Check out the Yahoo Photo Site - I posted more pictures today.***

Remember us in your prayers - and all of the children battling illness and disease. Don't forget Brandon's friends from Brenner's - James, Colby, Courtney...

Love ya,
Wendy

Tuesday, November 29, 2005 6:47 PM CST

DAY +69

No counts today

HAPPY BIRTHDAY TO ME! Thanks everyone for the birthday wishes! I had a nice present today, Brandon didn't get sick from his radiation! I also have to say a special thanks to Candie for the flowers she had delivered to the house today. It was such a wonderful surprise! Definitely brought a smile to my face.

Radiation went very well today. We arrived at 11:25 and we were out of there at 11:45! Unbelievable!! Since we were out so early and Brandon was feeling okay, we decided to ride around and see a few of the sightseeing places we haven't visited. We found the Philadelphia Zoo (1st Zoo), Boathouse Row and Fairmount Park. The surprise was all of these places are less than five minutes from our house just around the Philadelphia Museum of Art. The temperature was 67 so it was very pleasant. The rain held off until close to 5:00 pm. We went walking to the market and then we walked to the Art Museum. Brandon climbed the steps and I took lots of pictures. I will try to post them for you. It was so nice to get out and smell the fresh (and not so fresh) city air. Brandon and I even played bouncy ball in the street outside our house! Like I said, I couldn't have asked for a better birthday given the circumstances!

Brandon's eyelashes and eyebrows are so beautiful! And I can't wait for you all to see the newly growing hair. He has a little more than fuzz. His head looks dirty. His wish of getting blonde hair doesn't look like it is coming true. The hair I can see is dark. He screams when he looks in the bathroom mirror. He is so excited to see it coming back.

Oh, and here is the CAR REPORT: She worked just fine today. No warning lights to report tonight. Check back tomorrow for updates.

One more day down. Only 3 days of radiation left. Philadelphia has grown on us - I think I could live here. But you all know there is no place like home.

Love you and God Bless,
Wendy

Monday, November 28, 2005 1:39 PM CST

DAY +68

WBC 1.9
HGB 10.3
PLT 62

Counts look fine again today. No transfusions needed. We went to clinic this morning at 8:30 for a CBC (counts.) When they took Brandon back to the lab, the technician said they couldn't do just a fingerstick they needed to draw several tubes of blood for tests. I was confused, b/c when we left the appt from last week, I thought we were only gettng the CBC today. The technician said Brandon had to give a urine sample and we needed to collect his urine for 24 hours for a kidney test. I asked him if he was sure. I had no idea we had to do all of this. He said yes that he had the doctors orders. So they stuck Brandon's arm and drew all the blood. He gave a urine sample, which he didn't give enough, so we had to sit and drink juice and water until he could go some more. While he was sitting and waiting, his nurse and Pat (Nurse Practitioner) came over and apologized for all the confusion. Someone at the desk had entered the orders for Dec 19 for today. All of that bloodwork and tests should be done when we come back on the 19th. Wow! Brandon sure was happy he could stop drinking the juice & water. Pat straightened everything out. We are going back Wednesday morning to check counts again. He started his Bactrim (medicine to prevent lung infection) back last week, which can cause counts to drop some. So we'll see on Wednesday what his numbers look like. He has been taking Bactrim ever since his chemo started. After transplant he had to start doing the Pentamidine (inhaled version of Bactrim) which doesn't lower the counts like Bactrim. Once his platelets were over 40 for a week, he went back on Bactrim. Nana was so worried about the WBC dropping from 2.3 or so down to 1.9. It isn't much of a change, but still she felt better after I talked to her about the bactrim.

Only 4 more days of radiation!! Brandon did get sick again today. He is such a trooper! We left the hospital, stopped at the grocery store and headed to the house. On the way to the house he started feeling sick and heaved a little. He spotted a Burger King (of course in the middle of the city where you can't park and forget it there are no drivethrus!!) He yelled that he wanted a Hershey Pie from BK. I pulled up and Ashley jumped out and went in. We drove around a couple of blocks and picked her back up. The closer we got to the house, he got sick again. He threw up in the car. We came inside and he asked for Chicken Noodle Soup. He ate 1/2 a bowl and then that came up too. Then he asked for chocolate ice cream. How does he do it? These kids are amazing. They never quit - they never give up. Just keep on going. Its admirable!

Can you all believe this morning when we pulled out of our street that the SERVICE ENGINE SOON light came on the car??? When we got to the hospital, I checked the cap on the gas tank b/c there is a warning that if it is loose the SES light will come on. I tightened the cap, restarted the car and the light was still on. After radiation, we left the hospital and the light went off. Hopefully it was just the gas cap. We saw Dana, our social worker today, and she asked me if there was anything we needed and I told her a new car. What a laugh! Brandon talked with Dana today about his Make-A-Wish. The "wish fairies" should get in touch with us and come out to the house to meet and talk to Brandon about his wish. Once he gets everything taken care of, I'll let you all know what his wish is.

We had a great weekend. The