Thursday, December 20, 2007

So this will be the last post before our trip to California.. We are being picked up at 3:30am Saturday morning.. We are SOOOOO excited! There is still packing and a few last minute things to do so this will be a short post.

Brendon and 4 of his friends went to the movies to see Alvin and the Chipmunks, courtesy of Make-A-Wish and Flagship Cinemas in Lewiston. The boys had a great time. The manager and staff at the Flagship were fantastic! Here are some pictures from the party.. One of the kids didn't really want his picture taken so he isn't in all of the pictures. They're getting to the age where pictures are a pain, I think.
Brendon's Grandmother went with us to help. She's great!

That's it for now! We are not going to take the laptop with us so there will be no new posts until we return. We hope you all have a happy and safe holiday! Merry Christmas!!

Sunday, December 9, 2007

It's been a while since any updates.. Everything is going very well. Brendon had his dose of chemotherapy on 11/28 at the clinic. It went well. He was a little nauseous the next morning, but it was not too bad. He is now officially in Maintenance.. What a great place to be! He only has to go to the clinic once a month now and he only has his blood drawn once a month.. It's kind of strange to not have to go to the clinic as often. He has steroids that he has to take for 7 days in a row once a month. It's not as much as it was before so we are hoping that the side effects will be minimal. He has to take a bunch (approx. 15) of pills for his chemo once a week. It's not too bad.. So far so good! He is scheduled for more chemo when we get back from LegoLand.

Brendon made a gingerbread house last week.. It didn't come out exactly the way he wanted it to but it still looked good. It was a brand that we've never used before and it wasn't the greatest. The icing didn't stick very well, so we used some of our own. It was still fun to do. Brendon really gets into decorating them and it's cool to see the ideas that he comes up with...

We've been going to some of Brendon's Uncle Tommy's basketball games at UMF. It's been pretty fun. Here is a picture of Bren with his Uncle's girlfriend Chelsey at Tommy's last game.. She's such a sweetie!Brendon had a special visit with his second cousin Rhonda on Thursday. She is the sweetest person and Brendon just loves her. We don't get to see her as often as we'd like. She visited with us for a couple of hours. It was great to see her. Bren was happy to see her as you can tell in the picture...
This weekend was the first weekend that Brendon spent away from home since his diagnosis. He went to Belfast with his Meme. He left Friday night and came back Sunday afternoon. He had so much fun. She took him birthday shopping and he picked out some new Legos.. Imagine that, huh? :) He saw a play and had cake and ice cream. He was pretty tired when he got home, but he was so full of life! It was hard to let him go for the weekend, but he said it was nice to get away for a little while. He was happy to come back home and he was so excited to see us! It was a nice break from the everyday norm.

Sunday night we had a surprise planned for Brendon. Make-A-Wish arranged for us to go to Bren's favorite restaurant (Applebees) so they could give him a backpack to take on the plane with him. We were able to invite both sets of Grandparents. He was so surprised! He came in after everyone was there and he saw the balloons and all of the family and he just smiled. It was so cute to see.
He laughed and grinned the entire night. Our Make-A-Wish representatives Frank & Connie Ayotte were there and it was just like they were part of our family. They are such amazing people! We spent almost 2 hours enjoying the meal and enjoying each others company. Due to the fires and all that California has been going through, we do not have the itinerary yet. Frank and Connie will be coming to the house Friday night with the schedule and all of the information. We are very excited to see what they have planned for us! Brendon is getting more and more excited as the days go by.. He's so excited to finally be double digits! Here is a slide show from the meal tonight. There were 8 people total and they were Grampa and Grammie Dunn, Meme, Frank & Connie Ayotte, Mom, Dad and Brendon. Brendon's Uncle Tommy was supposed to be there also, but he was not able to make it.


We decorated the Christmas tree last night and we think it came out very nice. I put the lights and angel topper on and Brendon did everything else. It was a lot of fun.. We listened to Christmas music and drank hot chocolate. Here are some pics of our decorating adventure. :)Andy was working so he is not in any of the pictures.


That's it for this post. Sorry it's so long, but it's been a while since we updated. We'll try to post again before we leave. 11 days!!

Happy Holidays!
~Andy, Amber and Brendon~

Monday, November 26, 2007

We hope that everyone had a great Thanksgiving! Ours was very nice. It was a relaxing day with family. We over-ate and just enjoyed being together.. Here are some pictures from Thanksgiving. They are pretty goofy because that's how we are. :)

We spent most of the day after Thanksgiving just hanging out. We did do some early morning shopping with our Aunt Sherry and cousins Ashley and Danny. We didn't buy much, but it was a fun experience. I left the house at 3:30am, and Bren and Danny met up with us around 8ish. We were done around 11ish. The rest of the day was cat naps and getting some Christmas stuff out until our meeting with Make-A-Wish at 6:30. Frank and Connie Ayotte had some information for Brendon so they came over.. They gave him a Patriots jersey and hat, then they told him that he got to have a "party" at Flagship for him and 5 of his friends. They call it an enhancement to his wish. He was surprised and excited! So on 12/15 Bren will get to go to Flagship Cinemas in Lewiston with 5 of his friends and watch a movie, then have ice cream cake! Now he's having a hard time trying to figure out which 5 friends to invite. Here's a picture of Bren with his new jersey and hat....
Saturday Bren and I went to a parade in South Paris/Oxford with our family. It was a lot of fun. It was COLD, but it was pretty neat. We had never been to a Christmas parade so we didn't really know what to expect. Here are some pictures from the parade.. Notice the blankets, hats and coffee/hot chocolate cups...


Brendon's favorites were the dirt-bike float and the four wheelers. Imagine that, huh? He said that he'd give up everything he was going to get for Christmas if he could get a dirt bike. I would love to get him one, but it's just not feasible right now. He was SO excited to see them, though. He talked about the dirt bikes for a few hours after the parade was done. He wants to get a dirt bike and ride in the parade next year.. We'll see. After the parade we went out for Chinese with my mother-in-law. It was nice to spend the afternoon with just the 3 of us. We did a little Christmas shopping (Dollar Tree, gotta love that store!!) and then we went home. Here are some pictures we took with a giant stuffed moose that was outside of a store in Oxford..

Yesterday was spent raking the leaves and getting the house ready for a Christmas tree! We are so excited for Christmas! Every year we talk about others that may be less fortunate and try to make sure not to focus on the gift giving part of this holiday. This is the first year that we do not feel stress or anxiety because we may not have money for presents for everyone. I guess you could say the true meaning of Christmas is even more clear to us this year. Brendon will be turning 10 and I'm trying to think of something that we can do for a very large party that won't kill us financially.. He pointed out that this is a big year because he'll be double digits for the rest of his life (until he hits 100, he says).. Wow, talk about making us feel old! :) Any ideas?? I'm thinking mid-January for the date.. We'll be sure to let everyone know when it is. All will be invited!

This morning Brendon woke up excited to go to school. His teacher had a baby before school started so he's had a sub all this time. She's been in a few times to visit and Brendon says she seems very nice. He was so excited to meet her and visit with his friends. He really loves school!

25 days to Legoland! It's coming up so fast.. It's a little scary to think about all that needs to be done before then. It's well worth it, though.

That's about it for now. Brendon has an appointment at the clinic in Scarborough Wednesday afternoon. He is having his labs drawn tomorrow afternoon and hopefully his counts are on their way up. Having low white cell counts hasn't stopped him from doing normal activities. I'll update after the clinic visit.

Take care.. ~Amber

Wednesday, November 21, 2007

Not much new to report.. Brendon has been feeling great still. His white blood cell count is still pretty low, in fact it hasn't changed since 11/6. It's only 1.6. Despite that he's been great. He's very excited for Legoland.. He's counting down the days. A little over a month left. It's coming up pretty fast! He's been going to school everyday and has had normal amounts of energy.

Thanksgiving is tomorrow and we have all been thinking how different our life is now. We are thankful for our lives. We feel very blessed to be surrounded by so many amazing people.. The holidays have a whole new meaning to us.. We're excited.

That's about it.. I'll put some pictures of Thanksgiving up later in the week. We hope you all enjoy your day with your family. Happy Thanksgiving!

Much Love,
Andy, Amber & Brendon

Saturday, November 10, 2007

Things are good...

Brendon has been feeling great. No headaches, very little aches and pains and only mild bouts of nausea. He may have had a pulled muscle in his chest that was causing the throat/shoulder/neck pains. He's been taking it easy on his shoulder and he hasn't had any pains for almost a week... He went to school every day this week. I think this is the first week since school started that he hasn't missed a day.. He has been coming home from school full of energy and very talkative. It's great! He got his report card on Monday and he has all A's and B's and 1 C. He decided that he's going to work on bringing his Social Studies grade from a C up to an A this quarter. Hopefully he won't miss as much school, as his chemo will now be once a month for the remainder of his treatment (as long as all goes well..). He's been having friends over and he's returning to "normal" life. Yesterday after school he helped rake the leaves and today he's hunting with his dad. He's not allowed to carry a gun or shoot anything until he turns 10 so he is just along to see what it's like in the woods.. He was SO excited to go and spend time in the woods with his dad. He's hoping that Andy will get a deer today.. So far no news.

We would like to thank everyone for all the Halloween gifts/candy/treats that were given to Brendon. He has so much candy now! We appreciate it! He's over the disappointment from Halloween and now he's focused on Legoland. He can not wait to go! Each day he tells us how many more days until we leave.. Make-A-Wish came over to talk to us last night about a few other surprises they are working on for Brendon.. Can't tell you what they are just yet, but they are pretty cool! :)

Not much else new to report.... Things are going well.

I finally did a slide show of the pictures that Brendon took of Andy. It's at the bottom of this post.

Thank you all for your thoughts and prayers. We appreciate them more than you'll ever know. God Bless~

Wednesday, October 31, 2007

Frustration..

This week started off pretty good. Brendon was feeling great and looking forward to trick-or-treating tonight. He went to school on Monday and Tuesday and he had a lot of fun. His appointment for his spinal dose of chemo was supposed to be on Thursday, November 1st. We received a call from the clinic Monday afternoon telling us that they had to reschedule his appointment because they had so many people on Thursday. So they told us we had to be at the hospital on Wednesday, October 31st at 1pm. Now Brendon can't eat or drink anything before these procedures so they usually try to do them in the mornings. I guess they couldn't get him in before then. I was also concerned because sometimes it takes him a couple of hours to wake completely up and be ready to go.. But I took it in stride thinking everything would work out. Yesterday when I picked Brendon up from school he told me that his shoulder was hurting again.. It was the exact same place that it hurt when he was first diagnosed in April and then again in August. His pain was pretty bad (6 or 7 on a scale of 1-10, 10 being the worst) when it was time for bed so he had to take a couple of pain pills. He slept through the night and when he woke up this morning his neck and shoulder were still hurting.. I gave him some more pain meds and called the doctor to see what they wanted to do. I figured I'd let them know just in case they wanted to do any scans while we were in that area. They were not extremely concerned because he did not have a fever or any other symptoms and when this happened in August everything came back fine. They said to give it a day to see if it goes away. Last time the pain lasted for about 4 days. I told them that I was fine with that as long as Brendon was not in danger and as long as the pain pills continued to work. I wanted Brendon to be able to go trick-or-treating as long as he was up to it.. So the morning started off with Bren being in pain and hungry. Not a great way for him to start the day he was looking forward to.. I told the doctor and the nurse that were performing his procedure about his pain and they wanted to get an x-ray just to make sure all was well. After the x-ray we went back to the ASU department where we were told the nurse wanted to talk to us about the results. Right away we were extremely scared and anxious. Now it's about 2:30pm and Bren has only had a few crackers and some ginger ale. He's grouchy and hungry and wants to go home, understandably.. We waited for about 30 minutes before Andy decided that maybe there was a miscommunication and went out to the nurses' station to explain that we had left our cell number and thought we were going to be called with the results. Another 30 minutes later the nurse asks me to come to the station to talk to the nurse that performed Brendon's procedure on the phone because she's not sure how to transfer it to the room.. By this time I want to vomit from the nerves.. The nurse on the phone tells me everything looks fine. So I ask, "What about his pain?". They don't know what's causing it. He has no fevers, coughs or any other symptom.. Huh. What do I do? Keep an eye on him and keep giving him pain meds. At least there were no new masses or lymph's. Good news.. Still a mystery as to what's making him hurt.. So we finally get ready to leave and as he's being wheeled out of ASU he starts to get really nauseous and we have to stop and get him some more medicine. We requested a smaller dose so that he wouldn't be knocked out. He hates taking meds that make him fall asleep.. We got home around 4:15 and Brendon had another dose of chemo that needed to be given to him at 4:30 by one of his home health nurses. He was so sleepy from the meds at the hospital that he could barely get out of the chair. We decided to let him rest for a little while to see how he felt for trick-or-treating. Around 5:30 we told him that if he felt up to it that he would have to start getting ready to go.. He stands up and can barely walk because he's so nauseous and tired.. He put his costume on and almost threw up. By then we knew that he was not going to make trick-or-treating. He was completely devastated and angry, as was I. He was SOO excited and he couldn't even go! So Andy, being the fantastic dad that he is, made the best of it and went out to get us a movie to watch as a family and brought Bren back Sour Skittles (his favorite). It's not the same as going door to door, but what could we do? I know that not being able to go trick-or-treating is not a huge deal in the grand scheme of things, but I'm so sad for him! Brendon is still in pain and he threw up before bed.. We are exhausted, scared and frustrated with this horrible disease! Anyway, here's a picture of Bren's costume. He's smiling because he didn't want to show the tears..
Well, on to happier things.. Today Brendon received a disc in the mail that had all the photos that were taken of him for Project Tomorrow. They were so cute! These are pictures of Bren practicing his modeling skills...


There were also all of the pictures that Brendon took of Andy on the disc, but I'm too tired to put together another slide show..

Please pray for us this week... I will keep you all posted.. I also want to clarify that all of the staff at the hospital and clinic have always been fantastic! I don't blame them for anything that happened today.. I think it was just one of those days.. Thanks for letting me get rid of a little frustration... I appreciate and love you all! ~Amber

Saturday, October 27, 2007

It's been a week since the last post, so this one will probably be a long one..

Brendon has been feeling much better. He returned to school Tuesday and was a little nervous, but he did great. His counts were good enough for him to get his chemo on Thursday. He went to Maine Medical Center around 10:20am for his spinal dose of chemo. They accessed his port with no problems (which was a relief because Bren has had lots of issues with people trying to access his port) and started him on iv fluids right away. They put him to sleep, he got his medicine and woke up very hungry and really silly. He kept making all kinds of jokes. After the hospital we had to go to the clinic for him to get 2 other types of chemo. We were there for about an hour. We received some very good news while at the clinic.. Brendon has another spinal chemo next Thursday and that is his final one for the rest of his treatment. He was pretty excited to hear that! He will not have to go to the clinic after his spinal on 11/1 and he will be done chemo on 11/8. He will not have to go back to the clinic until 11/28. He will officially be in maintenance which means clinic visits once a month and that's it! No scans, medical procedures or anything like that! Just routine chemotherapy. If he is feeling sick or if we have any concerns we can call and they will see him, but that's only as needed. We are all very excited! After the clinic we came home and Bren was feeling pretty good. He woke up the next morning and had a very upset stomach. He is still feeling achy and nauseous and just not himself, but we're hoping he'll be better soon. The nausea hits him on and off most of the day. The medicine helps, which is good. His headaches have not been back up until today. He complained about it a little but the pain pills took care of them. We will keep an eye on the headaches to make sure they don't continue. His port is still accessed because he's on the 4 days in a row cycle of chemo (which is given at home by Critical Care). He will be de-accessed tomorrow morning so he'll be able to do more. We try to stick to easy activities when he's accessed to make sure nothing bumps it. He's looking forward to doing firewood at his Grandparent's house tomorrow if he feels up to it.. Funny, huh? He loves to work!

On to other information.. While we were at the clinic Thursday they made sure that Brendon picked out a pumpkin from the pumpkin patch in the back. They told him to pick out 2, so he did. This brings the total number of pumpkins for Brendon this year to 6. He loves carving them so this has been such a blessing! When he's not able to go to school he works on the pumpkins.

Today in Lewiston a mother of a Make-A-Wish child put on a fundraiser for Make-A-Wish. She had several small businesses that put items up for silent auctions, raffles and all kinds of other things. They also had a company giving free limo rides to Wish Children. Although we haven't gone on our wish trip yet we still have a special place in our hearts for them. We wanted to show our support and Bren wanted to take a spin in a limo so we went. It was so amazing! People knew of Brendon and they all were so nice. We had a few people tell us that they check the website often. We were so touched. Andy was hunting so it was just Bren and I. It was an Avon representative that was giving the limo rides so Bren and I went for a spin around the block. Brendon had never been in a limo and he thought it was pretty neat. When we got back to the hall Brendon started to not feel good so we went home. It was a dreary, yucky day but the people at the fundraiser today lifted our spirits.

Brendon started to feel better about an hour after getting home so we went to Chinese with our family for dinner. It was fun. Brendon again started to feel kind of cruddy after we ate so we went back home. He's sound asleep and we're hoping he'll feel much better tomorrow..

Here are a few pictures of some of the events listed above.


That's it for tonight.. I'll update again soon. Take care! ~Amber

Saturday, October 20, 2007

This week has been better than the last 2. Brendon is feeling much better. His mouth sores are gone. He was having really bad headaches from Sunday afternoon up until last night. They were so bad that he had to take 2 Oxycodone pills and lay down with the lights out until the headache went away. After about 3 days of headaches we started to get a little concerned. When we called the doctor to let them know about them, they thought maybe Brendon had a sinus infection. We went to CMMC for a CT scan yesterday afternoon. The results came back negative for sinus infection.. We don't really know what caused them, but he didn't have one today. We're hoping that he just had a cold and now he's getting over it. His counts are still pretty low. They've had to cancel his chemo twice because he wasn't where he needed to be. He has not been to school for about 2 weeks. He misses it, but he knows his immunity is not the greatest right now. Right now he is it getting absolutely nothing for medicine (except pain pills or nausea pills if needed). He's LOVING not having to take 15-20 pills a day... If his counts go up to where they need to be he's scheduled for chemo on Thursday, 10/25. We're hoping they do so that he can get these out of the way.. The next phase is maintenance....

Today Brendon and I went to watch a football game of his team from last year. Brendon was so excited to see the team. He really misses not playing. They were so happy to see him. They "retired" (no one else can wear his number until he's able to come back to play and take his number again.) his jersey from last year but they brought it with them and let him wear it during the game. We were only able to catch the last few minutes of the game, but he felt like part of the team. Everyone was great! They gave him a ball that everyone signed and had him sit with the team for a team picture.. The coach (Dion Jackson) called Bren to stand next to him and presented him with the ball. He told Bren that this year was dedicated to him and all of the kids have Brendon's number (66) on the front of their helmets.. It was such an emotional moment! I cried and Bren told me after that he wanted to cry. He was absolutely beaming! There is an All-Star game next week and we're hoping to go to that.. Thank you so much Jr. Lions for making Brendon feel so good!



After the game Brendon wanted to carve pumpkins so we went to Blackie's in Auburn and got 2 pumpkins for $6.. Brendon's pumpkin was almost 15 pounds! I couldn't believe how cheap they were.. He carved an amazing mask on it and it looks fantastic! He's getting really good carving designs. He does it better than I can..
He's in the football frame of mind again so he was outside playing pass with one of the neighbors. He is really hoping to be able to play again next year. Hopefully he can.

That's it for now.. Thank you for the continued thoughts and prayers. You all are amazing people! ~Amber

Tuesday, October 16, 2007

We are home again! YEAH!!! Brendon was discharged yesterday afternoon. We arrived home around 5pm. We had to stop and get prescriptions before coming home. It is SOOO nice to be home. Brendon was so tired that he fell asleep on the couch around 6:30 and slept all night. He woke up a few times, but he mostly slept until 9am. He's feeling much better. He hasn't taken any pain medicine since yesterday morning. He can't go to school because his counts are so low so we will be doing schoolwork at home this week. We are trying to plan some fun, easy things to do to keep him active. We will be having craft days all this week. We're trying to limit the tv watching and focus on more productive ways to pass the time..

Here are some pictures from the last hospital stay..

Sunday, October 14, 2007

Brendon is still running a fever on and off. It mostly hits him in the afternoon and evening. It has been that way since Friday. His white blood cell counts are dropping and it could be from the chemo or he could be fighting an infection. They have taken blood cultures 3 times to see if anything grows. The first one came back negative so we are just waiting on the last 2. They usually take 48 hours to fully grow and the last one was taken last night. They have put Bren on a general antibiotic to try to fight infection. He has also been taking tylenol through the night to keep his fever down. The first night it went up to 102.5 and last night the highest it went was 101.5. So the bad news is that we have to stay in the hospital until he can go 24 hours without a fever and his white counts go up. So it could be 2 more days here. The good news is that Brendon is feeling better. His mouth doesn't hurt as much and the sores on the corners of his mouth are healing. The oral pain medicine is working out very well. Yesterday he only needed the pain pills 3 times throughout the entire day. This morning he woke up feeling really good. He will be able to go outside for a little while today, which will be nice.. He is getting antibiotics every 8 hours so he is free from the iv pole during that time..

He's been keeping busy (when he's been feeling good) at the hospital. We have painted pumpkins, done a little homework and drawn lots of pictures. Last night we watched the movie Elf. We've seen it lots of times, but it never gets old. We laughed so much. We're trying to make the best of being in the hospital. Hopefully now that he's feeling better we'll be able to leave the room more and do more fun things to take his mind off not being home..

Thanks for the e-mails and messages! Have a great day~

Friday, October 12, 2007

Brendon is now off the PCA device and is seeing how the oral pain medicine does with managing his pain. So far it has been manageable. He is on 2 different types of pain medicines. They were talking about discharging us this afternoon or this evening, but then they took Bren's temperature and he had a fever of 100.6. So they waited a couple of hours and took it again. Still 100.6. We have been walking around and trying to keep things cool to get the temp to go down. No luck so far. Last check was about an hour ago and it was 100.9. They are not sure what's causing the fever.. His heart pretty rate is also pretty fast. His counts for this morning were low (white blood count is only 1.0), so they think he might be fighting something. So it's another night at the hospital, which is fine with us. We'd rather be safe than sorry.. The good thing is that Bren is not hooked up to any iv's so he doesn't have to push his big pole around wherever he goes. The sores in his mouth are getting better, but his tongue and the corners of his mouth are still pretty icky (technical term..). We are hoping that he'll feel much better tomorrow so that we can all go home.. We'll see.

Thursday, October 11, 2007

Brendon is still at the Barbara Bush Children's Hospital. His pain is much better, but it's still being controlled by medicine. Yesterday they decided to hook Brendon up to a PCA device. Basically it gives him a constant dose of medicine (fentanyl) without him having to ring for a nurse. He can also push a button to get a little boost of medicine if he starts to feel like the pain is getting bad. We all thought (including the nurses who have been taking care of him) that Brendon was trying too hard to be tough and not saying anything until the pain was pretty bad. With the PCA he won't have to worry about bothering anyone. He is hoping to start decreasing the dosage tonight or tomorrow morning to see how he feels. Once he feels like his mouth pain can be taken care of with oral meds we will be able to go home. He's been pretty sleepy because of the medicine. Today he ate chips with his lunch and didn't have any issues... He's still waiting on the pickles. He's nervous to try them until he knows his mouth is a lot better.

We still haven't met with Dr. Hand, but we were told that the samples came back fine. His sodium, calcium and magnesium all looked normal. They think that maybe Bren's shakiness and fast heart rate might have been caused by dehydration. Because of his mouth, throat and low sodium he hasn't been drinking that much. He's never been a really big drinker and he was still drinking, so we were not too concerned about dehydration until they mentioned it to us. They are going to try to get his pain taken care of and then take some more samples. His sodium level has been good for the past few days. They are going to do more tests later on to see what's going on.

Brendon received his last dose of chemotherapy for this round yesterday. Today is his last day on the steroids.. YEAH! He will start the next phase on 10/18. This phase is the last one until maintenance. It will last for 5 weeks and it will not be as intense as this last round was. This one was probably one of the worst for him. We are thankful that it's behind us now.

Brendon's hair is falling out. He has never really had his hair fall out and leave bald spots until this round. His hair always thinned out on the sides and looked like someone had shaved lines into the sides. This time he has bald spots on top of his head and his pillow is covered with little hairs. He gets itchy so we have to change his shirt a lot. I don't have my hair cutting tools here, so I can't shave it until we get home.. I'll post pictures when we get home.

That's about it. We'll update as soon as we have more to report on.. Thanks for the prayers!

Wednesday, October 10, 2007

Brendon went to see the kidney doctor, Dr. Hand, yesterday afternoon. He had to give a blood and urine sample to have further testing done. We are hoping to have the results later on this afternoon. After seeing Dr. Hand, we went to the clinic to be checked out. Bren's mouth has been hurting him so bad and the pain medicine we have is not helping him. The clinic gave Bren the choice of trying to up the home pain meds to see if that helped or being admitted and being put on morphine. His pain was bad enough that he decided to go to the hospital. He was admitted to Barbara Bush last night and was put on Benadryl and Morphine. He says that his mouth is feeling much better since he's been on the morphine. He was starting to question his decision to be admitted last night, but now he's glad he chose to be here. They can monitor his pain much better than we can at home. We are not sure how long we'll be here yet. The doctors/nurses think that he's on the tail end of the mouth sores, so hopefully it will feel better soon. Brendon's spirits are good today. He's a little sleepy, but he's in a lot less pain.

I'll update as soon as more we have more information....

Thursday, October 4, 2007

Saturday we took a drive as a family to New Hampshire to look at the foliage and to look for moose. It was fun spending time together doing something as simple as driving around. We saw lots of turkeys, but no moose or deer. The leaves were very pretty.


Brendon has been feeling strange lately. Sunday afternoon he was saying that his throat hurt so we looked in his mouth and saw lots of white stuff in the back of his throat. We called the doctor's office on Monday, described the symptoms and they figured that he had thrush. They called in a prescription and he started taking it right away. One of our home health nurses came to draw Brendon's labs again on Monday night. She looked at his throat and said it was definitely thrush. Thrush is a relatively common side effect of some of his medicine. Tuesday morning we received a phone call from a nurse at the clinic asking how Bren was feeling. She said that his sodium levels were still down and he might start acting loopy. He has been very shaky and more tired than usual. He had his appointment for his chemo and checkup yesterday afternoon. His sodium has been low for a couple of weeks now and putting him on a fluid restriction isn't making it go back up. When Brendon's doctor (Dr. Rossi) gave him his checkup before the chemo she noticed how shaky he was. She had his labs drawn again to check his calcium and magnesium levels. She also decided to refer Bren to a pediatric kidney specialist. Brendon has an appointment on 10/9 with them. Dr. Rossi said that Brendon had low sodium levels before he started chemo so he may need to be on a medicine to regulate it, but it should go back to normal once he's done all of his chemo. The labs came back fine for his blood, calcium and magnesium levels. He did not go to school today. His mouth hurts, he hasn't been sleeping much, he's losing his appetite and his legs hurt. He looks fine, but we can tell he doesn't feel good. He wants to go to school, but we'd rather him stay home and rest when he's feeling this way...He actually slept at the clinic yesterday while he was getting his chemo for almost an hour. He hardly ever sleeps while getting his medicine. He has started to wean off the steroids and should be completely off them on 10/10/07.

Last night The Children's Museum of Maine presented an exhibit called Project Tomorrow. Brendon and 8 other kids from the Maine Children's Cancer Program participated in this project. The kids were asked to pick a subject to photograph who they felt would be or has been important in your life. Brendon chose to photograph his father. The Children's Museum have the photos on display along with some questions that the kids answered about their subjects. The subject was also asked to explain what being selected meant to them. It was a lot of fun and the pictures came out great! The photos are displayed on the walls of the stairways going to the second floor. They will remain on display until 11/4/07. If you go to the Project Tomorrow website you can see the photos that were on display. They all did a great job! Here are some pictures of the night....



We'll update again soon. Have a great day~