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Monday, August 27, 2007 11:16 PM CDT
Brandon started kindergarten last Monday. He absolutely LOVES it!!!!
He can't wait to get dressed every morning to go to school. This makes us so happy. He is also doing very well in class. His teacher is Mrs. Renee Lovelace and she is great. Brandon has some really good classmates this year and their moms seem great as well.
We had to take Brandon to the ER Sunday. He has been running a fever and having a lot of sinus trouble. They drew his blood and his Monocytes were elevated indicating an infection.
Dr. Fernando (his Ped. doc) called this morning wanting to see him at 1pm. He has been complaining of right side pain and his left testicle hurting him for over a week. They did a urinalysis and it showed that his urine had white blood cells present, yeast and bacteria also present. He sent us over to the hospital for a stat Renal US and it showed his right kidney to look okay, but his left kidney is blocked. They are thinking he may have another kidney stone! I have to call SLCH in the morning and get him an appointment with his Urologist Dr. Copelen. We pray he doesn't have one, but we are still not sure what is going on. Today his temp has been around 100 all day. He had to miss school yesterday and tomorrow; and depending on his appointment possibly all week. We hope not!
I will keep you updated
Take care and God Bless
Thursday, August 2, 2007 4:15 PM CDT
Brandon has had a wonderful summer! We have been doing so many things lately it seems I can't catch up!
We went today to buy his school supplies. He starts school on August 20th. I can't believe that he will be in kindergarten this year!! He will go to First Baptist from 8:30 to 3:30. This will be the longest I have been away from him! What an adjustment this will be. He is looking forward to starting school though. We have really been practicing his alphabet and numbers. He can even read a few words from his "Dick & Jane" books. You know how parents always "spell" words they don't want their children to hear? Well, now he tries his best to sound them out and most of the time he figures them out! ha ha
He even counted from 1 to 100 the other night with Mike. We are so proud of him.
His last doctors appointment at SLCH went well. They said the "thickening" he has in his neck is muscle tissue. All of his labs were great and he has lost a few pounds over the summer from being so active.
He has been swimming almost every day. He now goes under water and swims! I can't even go under without holding my nose! (Brandon always laughs at me about that!) We joined Bluff Falls Water Park and have been going at least once a week. It is a lot of fun and a very safe place.
We are planning on going to the circus Sunday afternoon, but haven't told Brandon yet. We are wanting to surprise him. Hopefully things work out and we can go.
Sorry for the delay in updating, but we have been so busy!
I have started taking photographs and am keeping very busy. Give me a call if you are interested!
Brandon doesn't go back to Children's until the first of November unless something comes up.
Their are SO many people collecting tabs for Brandon this year. We are very blessed. Thanks to everyone saving for the Ronald McDonald House.
Please don't forget Faith, Rayni and Kristopher in your prayers and also Brandon's friend Aaron Dhara he met during his Brain radiation...they are all such special children.
Take care and God Bless
Tuesday, June 19, 2007 5:19 PM CDT
Brandon has been doing just wonderful lately! He is enjoying his summer to the fullest and having a blast every single day. My parents have a pool that is 3 x 12 and he "swims" every day. He is finally starting to put his face in the water.
Mike and I took him to Cloud 9 over the weekend and had a great time. (that is a 6,400 acre ATV ranch near West Plains, MO) We stayed in a 17ft camper trailer. Brandon couldn't get over how small it was! He asked where the bedroom was and we told him where the couch and the kitchen table was! ha ha
****Some great news**** We just found out today that Brandon placed 3rd in Pull Tabs for the Ronald McDonald House! I talked to Mandy today and she told me! Brandon is SO excited!! Faith took 2nd and we are so proud of them both!! She turned in 383 lbs and Brandon 314 lbs. We are hoping to double our amount for next year!!!! (keep your fingers crossed...but not too hard... keep pulling those tabs!) :)
Take care and God Bless
Wednesday, June 6, 2007 10:26 PM CDT
Brandon has done excellent since his dental surgery. He keeps asking us if his "new tooth" has fell out yet. ha We keep telling him that he will have it for quite a while before it finally falls out.
He had his last T-ball game last night and afterward we took the whole team to CiCi's Pizza for a party. After everyone ate we handed out trophies. The kids were so excited! We had such a wonderful team this year and all of the parents were great! Next year Brandon will be playing in the 6-7 yr old group and they use a pitching machine!!!!! Scary :-(
We are doing good so far this year on the pull tabs. We have so many more people saving them for us. It seems everyone is spreading the word! Thanks to everyone who is collecting. We have over half a tote full right now which is more than this time last year. If you need a poster or houses PLEASE give me call!
Tomorrow Brandon's "girlfriend" Bailey (her picture is in the album) is coming over along with her sister Morgan. They are going to visit and play with Brandon for a few hours. Tomorrow is Bailey's 5th Birthday! She is a sweetie and so is Morgan. We are very excited.
*Again please keep our young friends in your prayers and also please pray for us adopting. We are really hoping it happens this year*
Take care and God Bless
Saturday, June 2, 2007 7:15 AM CDT
Brandon had dental surgery yesterday in Cape Girardeau. He developed a cavity between his first two molars on the bottom right. They said his teeth are so close together that there was no prevention for the decay. Food was getting wedged between his teeth when he would eat, but then could not get out. The dentist even had a hard time checking the other teeth while he was under because they were so tight! Anyway, he also said that all of the chemo, antibiotics and steroids could be a contributing factor to his tooth decay and he will probably get more decay on the other side before long. (We pray not) Our insurance does not cover his teeth and the dental surgery is expensive!
So the tooth that decayed had caved in and an infection had set up in his tooth. He was surprised that Brandon had not complained with it. They put an antibiotic injection in his tooth and then put a silver cap on it. They also filled the 2 year molar because the decay spread to it also. He had his teeth cleaned and sealants put on the molars to help prevent decay.
We weren't sure how he would feel about his "new tooth", but when he first saw it he smiled real big. That is one thing that when he does smile you can see it.
We tease him and tell him now he has some "Bling Bling" ha ha
Other than his surgery he has been doing very well. Last weekend his allergies acted up and both of his eyes matted shut and swelled so much he couldn't hardly open them. It was bad. I kept a warm rag on them and his medicated eyedrops 3 times a day. He was brave.
Oh! yesterday after his dental surgery we ate at Lamberts in Sikeston and got to see his "girfriend" he met there almost 2 years ago. Her name is Rachel and she is a waitr
ess. She is very pretty. Brandon knows how to pick the girls! ha ha Anyway I took a picture of them.
***I finally updated he photo album!!! *Please remember Faith and Kristopher in your prayers*
Take care and God Bless
Wednesday, May 23, 2007 10:42 PM CDT
Brandon had clinic on Monday and his appointment went very well. All of his counts were in normal range and Dr. Wilson said he is doing excellent! For the first time we get a three month interval between appointments. His next appointment isn't until August 13th if all goes well!!!
Brandon's T-ball is going good. He is hitting the ball hard and even fielding quite a few balls. He really enjoys it and the kids are so much fun to watch.
We went up to St. Louis for the Pull Tab Pandemonium and Brandon turned in 314 lbs. We were so proud of him. Thanks to everyone who has been saving tabs for him. We are hoping to double that amount by next April. We also got a HUGE shock when we received the new Ronald McDonald House Pull Tab posters.....Brandon's picture is on it!! We are all so proud! He has been signing some of his posters and giving them out along with houses to people who are saving tabs for him. If you are interested in saving tabs for Brandon PLEASE let us know and we will get you all the things you need!! "Keep pulling those tabs"!
***Once again we ask that you keep Brandon's friend Kristopher Schreacke in your prayers. He went to clinic on Tuesday and found out his port was not working and they did surgery yesterday to replace it. They also did a bone scan and found out that he has severe osteoporosis and is being fitted for a back brace to prevent any fractures of the spine (remember this brave boy is Brandon's age). Several of his vertebrae are close together/sitting atop one another. PLEASE keep Kristopher and his family Kevin, Carrie and Johnathon in you prayers. They are a wonderful family. Please try to visit his site (I have his link below) and sign his guestbook to let him know that there are people out there thinking and praying for him. Thank you.
Take care and God Bles
Wednesday, May 2, 2007 11:09 PM CDT
Things have been going pretty well over the last few weeks. Brandon struggled with several mouth sores two weeks ago and we aren't sure what caused them. Dr. Wilson started him on his mouth swish & swallow "Benadryl,Maalox,Nystantin" and it finally kicked in after 5 days. He dropped a couple of pounds, but did okay. It has been a long time since he has cried because he didn't feel good. We kept him home from school for 3 days.
Brandon only has 8 more days of school left until his End of the Year Program. He will receive a certificate and then "summer vacation"!!!! I can't believe he will be in Kindergarten next year! He is really growing up fast!
His T-ball is going well. We had our first game this past Monday. His next game is Friday May 4th at 6:30pm at the First Baptist Church Field. He is so excited.
Brandon's next appointment at SLCH is May 21st. I will update when we get back.
***Again I ask that everyone keep Brandon's dear friend Kristopher Schreacke in their prayers. Kristopher is struggling right now with GVHD of the skin and is in need of prayer. His website link is below. Please go to his site and read about Kristopher...he is a wonderful, loving boy!!! We care so much for his family.
Take care and God Bless
Saturday, April 14, 2007 11:53 PM CDT
We attended the B.A. Sports Gala tonight at the Coliseum and it was wonderful. We went with the Rayni Day Miracle Club. They gave out all sorts of plaques, trophies and awards and then Kyle Maynard spoke (which was amazing!!!) and also Stacy Pikey-the mother of a little girl who was killed and her family donated her organs. It was a very touching story. Her website is "www.sydneyssanta.org" for those who would like to check it out.
Michelle Worley from the Miracle Club went up to speak and we took all the children up on stage. Brandon, Rayni, Faith, Tressa and Brianna stood there like such big kids! We took turns telling the crowd of around 600 their names, age and diagnosis. It was so special. The kids got their picture taken with Kyle Maynard (for those who do not know Kyle, he was born without any arms or legs and is very active in numerous sports with wrestling being his favorite. He holds a world record in weight lifting. They showed a video of him training and working out and it brought tears to my eyes seeing he determination in his face. He has been on "Larry King", "Oprah" and numerous other programs telling his story. He has written a book titled "No Excuses". He is sending an autographed copy to Brandon and he is very excited. He is truly an amazing human being.
Brandon was so tired that he fell asleep as soon as we got home.
Well, I could go on and on, but it is midnight and I am tired.
**Please keep Brandon's friend Kristopher Schreake in your prayers...he has pneumonia and a high fever and they took him to SLCH today. Kristopher has T-cell Leukemia like Brandon. (his link is at the bottom of Brandon's page)
Take care and God Bless
Wednesday, March 28, 2007 10:29 AM CDT
Well, we have been very busy lately with school and all the upcoming activities this spring will bring. I am so glad Brandon has been feeling well and going to school! He will be playing T-ball that starts next month and he is very excited. So many of his friends are on his team. Mike and Shane Cornman are coaching the team. We are the Mariners.
We went to clinic last Monday and all of Brandon's counts were in the normal range. First time that has happened in forever (BUT I am not complaining) :) We took him to Chuck E. Cheeses so he had a blast! (so did I)
*They have moved up the Pull Tab Pandemonium from September to May! So we only have one more month to collect tabs!!!! Please let me know if you have any so we can get together and collect. I am not sure why they moved the date up, but I was surprised.
Take care and God Bless
Saturday, February 24, 2007 6:53 AM CST
Sorry I haven't updated but they admitted Brandon to PBRMC Thursday and there wasn't any wireless networks for me to update.
Anyway...he was admitted because after his labs came back they showed he was dehydrated and his Potassium level was high. He had lost 3 pounds, but was still in good spirits. He begged me and his Granny to take him home because he didn't want to go in the hospital.
They started his IV (which he hated) with IV fluids and ordered him something to eat. Right after we got in his room they did a echocardiogram on him to check his heart. *With his potassium being so high, that could be a sign of heart problems - Chemotherapy can damage your heart*
Thankfully everything looked good on the echo. They kept a close eye on Brandon and took every precaution possible with him in the hospital. The nurses were by far the best we had ever had here in Poplar Bluff.
He was on Zithromax, Histussin HC and a breathing treatment twice a day and fluids. They are also running a blood test now to see if he has micro plasma pneumonia OR (I finally found out means) "walking pneumonia". I will find out Monday. They discharged him yesterday around noon and his new labs yesterday looked so much better. His counts were up and his potassium level was down. (thank the Lord for taking care of Brandon) We were all really scared about his heart.
After we got home yesterday he took a 3 1/2 hour nap. He was exhausted.
I had to go to the dentist at 1pm yesterday because my tooth broke on Thursday morning. I haven't been able to eat anything since then. Hopefully today I can handle some broth. On top of worrying about Brandon I have been sick to my stomach (bad) and have had a Migraine since my tooth broke. ***when it rains-it pours***
So we are home and Brandon is feeling much better! The IV fluids really seemed to make a difference. He ate a good supper last night and played with his daddy (I went to bed early)
Thanks to EVERYONE who is keeping Brandon in their prayers. Brandon is 3 years and 5 months into remission, but since he will never be cancer free we can never let our guard down. We trust that God will always watch over Brandon and we live each day to it's fullest and then wait to see what tomorrow brings.
He is such a strong little man!!
He misses school and can't wait to go back (hopefully Monday) Can you believe I have to register him for KINDERGARTEN Monday? (he is growing up fast!)
**Today is Brandon's PaPa's Birthday...Happy Birthday Pa Pa Robey!!
Take care and God Bless
Monday, February 19, 2007 8:05 PM CST
Hello
Brandon has been feeling pretty rotten the last week. He started running a high fever last Tuesday night with a terrible cough and runny nose. We took him to the ER and then to his pediatrician on the 14th. They diagnosed him with severe bronchitis on the verge of pneumonia. He has been on an antibiotic all week along with two different cough medicines. He still was not better as of yesterday so we had to take him back today to the doctor. They did another chest Xray and the mucus in his lungs was still there. Also his blood work showed his counts have dropped severely. They started Brandon on breathing treatments 4 times a day, another week of antibiotic and a stronger cough medicine. Dr. Fernando said that his bronchitis could turn into "micro plasma pneumonia" (I'm not sure what that is yet, but am trying to look it up on the computer)
His fever is finally down to the 99's (it was up to 102.2)
They faxed all of his info to SLCH and his nurse Amy called me today to check on him. She said if his counts keep dropping they will need to see him in St. Louis. We go back to Dr. Fernando on Thursday for more lab work.
He hasn't had an appetite at ALL and has lost almost 2 pounds.
*Please keep Brandon in your prayers that his labs improve and that he feels better soon. This will mark his second week out of school.
***Also Rayni Worley had her second surgery today for a new Broviac replacement. She had a line infection. She is in SLCH. Brandon and I talked to her last night and she seemed in high spirits. Please also keep her in your prayers.
Saturday, January 27, 2007 1:08 PM CST
Today marks one year ago that Brandon got his Broviac out!!! We looked back at the pictures from that day before and after surgery. You wouldn't believe his eyes when he woke up from surgery and the tube coming out of his chest was gone. What a wonderful day.
Brandon has had a great week...Monday we went to SLCH for clinic and his ANC was 6150. (which is very good) He got to take his "girlfriend and best friend" (he says) Bailey who is 4. Her mom Jill went with us. After clinic we went to Chuck E.Cheese's which was a total hit with the kids! We stayed there a little under 2 hours!!
Tuesday he went to his Granny & Pa Pa's to play and spend time all evening.
Wednesday my sister-n-law and niece and nephew,Hunter and Ian came over to play with Brandon. They played all afternoon. Thursday I took him over to his Grandma & Grandpa's to spend time with them for a while and then last night we went back over to Mike's parents to eat dinner with his family. So, to say the least, he has had a busy week.
He has been doing VERY well in school. He goes from 8:30 to 11:30 M-F. I can't believe next year he will be in kindergarten! He is really growing up fast. At clinic he weighed 52 pounds and was 45" tall!
Brandon's new puppy "Odie" has been doing good. He is so good with Brandon. I still need to post some new pics in the album.
Take care and God Bless
Thursday, January 11, 2007 5:11 PM CST
We went to North Carolina this past weekend to visit family and it was so nice. The Smokey Mountains were so beautiful! Brandon kept saying how he wanted to roll down them or ride his bike down them. He was so funny!
He got a lot of enjoyment out of playing with his cousins Christian and Jacob who are 8 and 4. I enjoyed visiting with my two cousins (Scottie & Celeste) and loving on Celeste's new baby boy Jackson. (He is 8 weeks old)
I took Brandon to school Monday and then his teacher called me after an hour and said that two kids from school had been diagnosed with the 5th Disease (Parvo B16) I had to go pick Brandon up and keep him out of school all week. That is one infection Brandon doesn't need to come in contact with. The doctor also said that Mono, Strep and the Flu are also going around. Yuck!!
Brandon goes back to SLCH on Tuesday and his "girlfriend" and her mom are going with us. Her name is Bailey and she is a doll. They are in the same class. He says (quote) "Mom, she is so beautiful that she makes my eyes pop in and out!" Oh Boy!!! ha ha he is such a mess!
He has been really feeling well lately. He has been playing up a storm with his new dog "Odie" and still prays every night for a baby brother or sister. I updated our adoption profile and took it the hospital and our local doctors this week and will next week. We are really hoping to adopt this year!
I will try to post some new pics in the album tomorrow. The ones there now are so old! (sorry for the delay, but I am still learning my new computer)
Take care and God Bless
Monday, January 1, 2007 1:49 PM CST
Happy New Year **2007**
We hope everyone had a very Merry Christmas and wonderful New Year! We spent the evening at home last night and stayed up to watch the ball drop in Times Square.
Brandon has been feeling great lately (knock on wood) and he is anxious to go back to school. Mike has had sinus problems since last Wednesday and has felt yucky.
We got Brandon a dog last month. His name is Odie and he is a Cairn Terrior. He is a cutie pie. He is 6 months old. They play together all the time.
Take care and God Bless
Sunday, November 12, 2006 10:15 PM CST
Hello everyone!!!
It has been 4 months since I have updated and I am sorry. We are finally in our house and I finally have internet service again. I was without a computer for a very long time and I so missed it!!
Brandon has been very well up until this last month. He has been fighting a sinus infection for almost 12 weeks and hopefully it is starting to get better.
He started having neck pain about a month ago, bad enough that he couldn't even turn his neck. We took him to SLCH to see his Neurosurgeon and he said that Brandon had severely strained his neck. They put him in a soft neck collar for 2 weeks. It seems after his neck got better he immediately started having headaches. They did a MRI 3 weeks ago and things looked okay, but said if they continued they would do a more extensive MRI. Well, they didn't get any better. He went this past Monday for a Spinal Tap (his first one since getting his Broviac out over a year ago). Luckily it was clear. We went back up this past Thursday and they did a MRI under general anesthesia that lasted for 3 hours and 15 minutes! That was so long for him to be put under! He has been coughing his head off and was running a 101.5 the morning of his MRI. During the test he had some respiratory problems and they had to give him a Epi shot under his skin on his arm to help with his breathing. After the MRI they gave him a breathing treatment before he woke up. His arms are bruised up pretty bad, but thank goodness his MRI turned out clear. He has a severe case of Chronic Sinusitis. They put him on an antibiotic for 21 days and hopefully that will do the trick. He seems to be feeling a lot better now. His temp went up to 102.0 coming home Thursday, but since then no temp.
ANYWAY...
Brandon started school this August!!!! He is in Pre-K at First Baptist Church and he loves it! I am so proud of him because he is doing very well and is making a lot of new friends.
I took him to see Little Big Town in concert with the Miracle Club and he invited his friend Bailey from his class (his new little "girfriend") to go. Bailey, her mom and sister went with us. We had a wonderful time. It was great getting to spend time with Rayni, Faith and the other Miracle Club kids.
Brandon is really growing up fast. He is now 5 years old and weighs 50 pounds! He has come such a long way!
We turned in Brandon's Pull Tabs in September and his weighed in at 240.2 pounds. He ended up taking 2nd place. Faith took first (Hooray for you Faith!!!) We all went up this month and both Faith and Brandon received trophies for taking 1st and 2nd place. We are collecting tabs again for next year and we are hoping to double his weight in tabs! So PLEASE help us out by saving those tabs and giving us a call when you have some ready for us to pick up.
We hope this update finds everyone doing well, and I can finally start updating weekly.
**Hello to Kristopher** We miss seeing you at SLCH, but ask Amy Hermann about you every month and think of you often. Take care sweetie!!!!
Take care and God Bless
Saturday, July 1, 2006 10:26 PM CDT
Hello
Brandon has been doing fairly well over the last few weeks. He came down with some kind of sinus infection two weeks ago and ran a 102.6 temp. He bounced back very quickly...but in the process gave it to me and my mom! Ours lasted almost a week! Yuck!
Last week he felt really well, and this week he has seemed to be a little runned down feeling. He has had a lost of appetite and has been sleeping alot more. He has been complaining alot with headaches and backaches. I went and had his counts checks at GAMMA Labs on Wednesday and his White Blood Cell count was a little elevated. It was on the "high" end of normal Amy said. All the rest of his counts looks good, but his WBC usually runs around 4 or 5 and it was 10.3 . It really scared me to no end!!!!! His appetite has picked back up some over the last couple of days, so hopefully he will get a good report Monday (that is when we go back to clinic). I will update Monday night.
We went to the Parade today and Brandon had a blast. He and Hunter (his cousin) were grabbing candy as fast as they could throw it out! ha ha It was a nice parade.
Our house if really looking good. We are hoping only maybe 6 more weeks and we will be moving in!
Brandon started bible school 3 weeks ago, but has been able to go only the first week. After that he as sick and then this week he was complaining of the headaches and backaches. Hopefully things will go well so he can go next Wednesday.
Take care and God Bless
Tuesday, June 6, 2006 11:09 PM CDT
It seems like a million things have happened since the last time I have updated!
Sadly, Brandon lost another friend, Shane Porter to cancer last Friday. We went to a party for Shane 2 weeks ago and were so happy we got to visit with him for a little while. He went peacefully to sleep and did not suffer. That means so much. (please keep his family in your prayers)
Brandon had clinic yesterday and his appointment went very well. His ANC came back at around 2800. I am glad his platelets were high because yesterday when they stuck his finger he bled something terrible! He was still bleeding 3 hours later and we had to keep changing band-aids.
We got to see Kristopher Schreacke (one of Brandon's friends from the hospital) and it was wonderful visiting with him and his family. Brandon and Kristopher just talked and hugged each other...it was very special. Kristopher also has T-Cell ALL like Brandon. In fact, they are the only 2 that have T-Cell that we know of at Children's. He is such a sweetie!
He got to go to Chuck E. Cheeses and he was so happy. Mike went with us yesterday so we had a special "family day". On our way home we went to St. Joe State Park. He got to play on the jungle gyms there and Mike and I just sat back and watched our little boy growing up!
Our house is looking very good. By the end of the week all of our inside walls should be put up. Brandon now has a room to walk in to!
***The American Cancer Society Relay For Life is this coming Friday (June 9th) at the Black River Colliseum. Brandon will be walking the Survivor lap at 6pm for the 3rd year in a row. We would love for everyone to come out if they can! We still have the sign hung up that Faith and her family made for Brandon last year. He is very excited.
Well, it is getting pretty late and I am exhausted!
Take care and God Bless
Tuesday, May 16, 2006 9:01 PM CDT
Brandon's pink eye ended up spreading to both eyes. They have been itching him like crazy. Today his right eye is finally starting to look good and his left is slowly looking better. At least he is past the contagious stage. He has been complaining of back pain most of the day. It seems to be more on the left side than anywhere else. Every once in a while he would stop playing and say he needed to "rest his back for a while". I felt so sorry for him. I think he will be just fine. There are so many reasons that it could be bothering him, so I am just going to keep a close eye on it.
Our house is really coming along. They finished the entry today and it looks really good. The roofers should get finished tomorrow and hopefully by early next week we will be staining the outside. Yeah!
Take care and God Bless
Saturday, May 13, 2006 7:19 AM CDT
A quick update...
I ended up taking Brandon to the doctor yesterday because his eye was looking worse to me. It ends up he has pink eye of all things! The Doctor gave him some eye drops and hopefully his eye will look better when he wakes up this morning. It was really red last night. It doesn't seem to bother him which is a blessing.
Brandon got a dog yesterday. He is a 5 month old Chocolate Lab named Chopper. A family had him (with children) that lived in town and wanted him to have room to run...well, we have plenty! He is so cute and very loveable! Brandon was scared at first because he was hyper, but after he settled down (the dog not Brandon) ha ha Brandon was fine and fell in love with him.
We are going to play outside today if he feels like it.
Take care and God Bless
Monday, May 8, 2006 9:41 PM CDT
Brandon had a good visit at clinic May 3rd. His counts came back with his ANC around 2400. He had his blood drawn from his finger again and did very good. We had a quick trip there and back.
His left eye has been really bothering him lately. It is very red and seems to hurt a little. It isn't pink eye or anything, but for some reason it is really irritated. I have been putting the eye drops his eye doctor gave him in it, so hopefully it will work.
**We are asking for everyone to PLEASE keep another one of Brandon's friends in your prayers. Shane Porter (I believe Shane is now 17) has relapsed after just having a bone marrow transplant the week of Christmas. (it has came back very aggressive)(he has leukemia like Brandon) After talking with the Oncology team, Shane has chose not to receive any further treatment for his cancer. His family is not sure how much time they have left with Shane; but are making every day special just as we do daily. He got to go skydiving this past weekend which is something he has always wanted to do. I always say that you never know what tomorrow will bring and this just shows you that is so true. Leukemia is a type of cancer in which you are NEVER cancer free and that is scary. Shane is a great young man and he has a wonderful family to love and support him. ** WE LOVE YOU SHANE Shane has a Caringbridge website. It you visit the "home page" he has a site on the newer version of caringbridge. You just need to type in his name "shaneporter" I know his family would love for you all to visit.
Brandon has been going fishing a lot lately with his PaPa. He has been catching all kinds of fish and is really getting good at casting his pole out and reeling it in. He gets so excited when he gets a bite on his line.
Our house is coming along. They will start on the entry tomorrow and hopefully have the shingles on by the weekend. The weather has really been getting us down!
We moved my grandmother in a new house this past week. She is very ill and now she is much closer to us. She enjoys seeing Brandon every day!
Our lives seems to be crazy lately with a million things going on, but we are making it.
Hope everyone is doing well.
We are so thankful Brandon is so full of life and enjoying having his Broviac out. God has so blessed us with our son.
Take care and God Bless
Friday, April 28, 2006 5:13 AM CDT
WOW!
Things have been busy around the camper!
I just turned on my computer for the first time in over 2 weeks. You wouldn't believe my emails!
Brandon has been doing great recently and is so full of energy. We go back to clinic on Monday May 1st at 11am. He is really getting used to having his finger stuck for his blood draw. He always tells everyone about it and makes it sound like they cut his whole finger off every time. It is so cute!
He has been keeping me VERY active! From the moment he wakes up until the time he goes to bed is is GO GO GO! But I am not complaining. Seeing him happy and wanting to play is WONDERFUL!
We went to the egg hunt again this year and he had a blast. The weather was of course beautiful again this year and all the kids were so excited. He found several eggs (all full of goodies). There were over 2000 eggs hidden this year! Kudos to Amy Hood!! :)
The Relay For Life is coming up in June. Brandon is already talking about it. He can't wait to walk the Survivor Lap again this year. I am so proud of him.
He has been going around without a shirt and taking tons of baths and playing in the water since the Broviac is out.
He is also "Girl Crazy" at 4 1/2 years old! :) When he sees a girl he blushes! It's cute. But he always says that no one is more beautiful than Rayni and that he is going to marry her some day. They came over last week and got to play for a little while. He was so happy.
Brandon is weighing around 43 pounds now and really getting tall. I have to buy him all new summer clothes because last years are so little!
Our house is coming along great! We are really getting excited.
*Please keep my grandmother in your prayers. She is VERY sick. Thank you
We are planning a HUGE yard sale in about a month. It will be my far the biggest we have ever had. I will let everyone know the details later.
Well, better go, I need to take my allergy medication. (my allergies are getting the best of me this year)
Take care and God Bless
Thursday, March 23, 2006 10:38 PM CST
Sorry for the delay in updating.
Brandon has been doing very well. The mouth sores are finally gone and he has been eating up a storm. He weighs 42 pounds now! He has gained 2 pounds in the last 2 weeks! I am so proud of him. He is wearing jeans now!
We got him registered for Pre-school and he is so excited. I think it starts August 21st. Everytime we pass First Baptist Church he says "there's my school". He will be going from 8:30 - 11:30 every morning. We have been working on his alphabet every day and he is really starting to improve.
My friend Jamie is in town (her grandmother passed away yesterday) and Brandon and I went over there tonight to visit with them. She and her husband Greg have two sons. We joke because her boys names are Brennan and Landon; so when we are together we are calling Brandon, Brennan and Landon and it gets confusing! Brandon had such a good time playing with them.
Well, our house is coming along. They have part of the logs on the backside finished and most of the garage is finished except for two corners. It is really looking good.
This weather is making my allergies act up terrible! I will be so glad when the weather finally starts to get pretty. Brandon is anxious to play outside. He got to ride his bike the other day and he had such a good time.
Well, it is late and I need to get Brandon in bed. Right now he is watching "Monsters, Inc." (that is such a cute show)
Take care and God Bless
Wednesday, March 8, 2006 6:36 PM CST
Brandon's appointment at Children's went well. He had his last breathing treatment Monday...YEAH!!!!!
Dr. Smyth talked with us and said he doesn't think Brandon's Chiari has anything to do with his eyes right now. He told me some things to watch out for, but for now he is doing great. He really enjoyed talking with Brandon. He laughed so hard when Brandon asked him if he could "please" have a "Scat Can". He always enjoyed getting a CT because of all the scenes on the walls during the procedure.
He woke up Sunday with several mouth sores on both his top and bottom lips. Monday it was much worse. His counts were good (around 2600) but a little lower than usual, which could indicate a little virus of some sort. That would of course explain the mouth sores. He has been very upset because he can't eat anything he wants to. He even got one on his gum yesterday. They started him on Acyclovir Monday and hopefully he will be feeling better soon. Today he has a little diarrhea and you can tell he doesn't feel 100%.
Our next appointment is April 3rd and his eye appointment is April 4th, so we will be spending the night that Monday night.
Mike's oral surgery for his tooth went well. His mom took him and stayed with him until we got home.
We were finally starting on our house, and then it started raining today. They are about done with the sub-floor.
We are getting excited.
Take care and God Bless
Wednesday, March 1, 2006 5:45 AM CST
Brandon got to play outside most of the day yesterday. It was so beautiful! He ran around and went up the hill to ride his bike. His Granny blew bubbles outside and he chased after them. It was so cute to watch!
He has still been complaining about "both" his eyes bothering him, not just the right one. We haven't heard anything from Children's so I guess they are waiting for us to see the Neurosurgeon on Monday before his appointment. I will let you know if anything changes.
Well, today is a big day for Brandon....I am going to enroll him in Preschool this morning. It doesn't start until August, but I am already getting nervous. He will go in the morning class from 8:30 to 11:30am. Those are the perfect hours for him. Afterward we can get some lunch and then he can rest in the afternoon. We will be in our house by then (hopefully) and have a normal routine.
He is so excited about school. His face lights up when we talk about it! He is such a cutie!
Well, better go - thanks for your continuing prayers!
Take care and God Bless
Monday, February 27, 2006 10:19 AM CST
Brandon has had a pretty good week.
He has been complaining quite a bit about his right eye bothering him. He is always squinting and rubbing it and saying it is blurry and he can't see out of it.
I called SLCH last week and talked to his nurse Amy. She is calling me back today to see how he did over the weekend. I have been having to use a warm rag on it every morning.
He goes back to clinic next Monday at 1pm and we also have an appointment with his Neurosurgeon at 11:30am that same morning.
I am not sure what is going on. Dr. Hulbert said they may want to do a Spinal Tap possibly (I hope not) but I'm not sure yet. I don't know what could wrong. All I can think of is: he may need glasses because his eyes are just far sided - he has relapsed in his Spinal Cord - his Chiari is starting to act up again - or a tumor behind his right eye - or what I am totally praying for...nothing at all. I really don't know; but I always try to think of all the possibilties to know what we may be dealing with. I will update as soon as I find out something. I should know more today after Amy calls.
Other than that he has been feeling great. He has been playing outside once in a while when it is warm enough. We have been going up on the hill watching them work on the house. They are starting the sub-floor this week and hopefully the logs by the middle of next week. They finished the blocks last Friday.
My mom is going to the doctor today at 1:45pm. She has Melanoma on her face and a specialist is going to look at it to see what they need to do. Hopefully she won't have to go through chemo or radiation. I will let you know.
Mike is having oral surgery next Monday (if Brandon doesn't have a Spinal) on one of his teeth that has been giving him problems. His mom is going to take him since we will be in St. Louis. A lot is going on with everyone, but at least none of us are sick (knock on wood)
I need to go, Brandon is complaining with his eye again and I need to put a warm washcloth on it.
*Please keep us all in your prayers and also Sister Karen from our church...she is going through a challenging time right now with some personal health issues.
Take care and God Bless
Friday, February 17, 2006 5:55 AM CST
Things have been going pretty good this past week. Brandon has been feeling wonderful and is as hyper as ever!
Everyone around him has been sick, but luckily he has stayed healthy. I was sick last weekend with a fever n/v and sinusitis. Mike got it right after I did. Brandon sneezed a few times and had a little runny nose; but nothing major thank goodness!
He had a great Valentine's Day. We traced his hands and he made Valentine's for his grandparents. We got magic marker everywhere, but it was fun (and washable) He got a bunch of candy, some DVD's, a game and some other neat stuff.
We finally got our last footing poured for our house and they will be starting the blocks on Monday. Finally!!!
We have been picking out a few things for the house once it is finished and I have been working on an afghan for the living room. I am going to make a quilt for the bedroom once I decide what to make the colors.
Brandon goes back to clinic on March 6th at 1pm...
Take care and God Bless
Friday, February 10, 2006 0:36 AM CST
Brandon's appointment at Clinic went excellent.
He was so brave when they drew his blood. He cried of course; but not for very long. It is scary getting your blood drawn...even for an adult! He did his breathing treatment and by the time it was finished we got his counts back.
I am very happy to say that Monday marked the first day that ALL of his counts came back within the normal range! His WBC was 6.9 - Hemaglobin 12.8 - and Platelets 262. His ANC was 3726! God is taking care of our son!!!!!
I am so happy and proud of him.
He has been feeling pretty good all week. Today he was a little pale, but I think everything is fine. He is growing more and more each day.
I am going the end of March to enroll him in Preschool!!! Can you believe he is already old enough to start? I can't. I cried the other day because I am already having withdrawls just thinking about having to leave him somewhere and I can't stay! He has never been away from his MOMMY! He will only be going half a day thank goodness. I am enrolling him at First Baptist. I had heard really good things about their classes there. *At least I still have 6 months to brave up before he starts in August! ha ha He can't wait to go to "school" We have been practicing his alphabet and numbers every day playing "school" ourselves. It is fun.
It is supposed to snow here tomorrow..oh today I mean (it is 12:40 am now) we could get anywhere from 2-4 inches. Brandon is excited so he can build a snowman. Hopefully he will be able to.
:}
Take care and God Bless
Monday, February 6, 2006 6:32 AM CST
We are leaving for Clinic this morning around 7am. I haven't updated since before my test.
Brandon has been feeling just wonderful and LOVES having his Broviac out.
He took a bath last night during the Super Bowl and we couldn't hardly hear the game over his laughter in the tub! I bought him some new bath toys and he loves to play.
My Colonoscopy went pretty good. Dr. Freeman removed two polyps and said I had severe IBS. He started me on some new medicine called Zelnorm. It seems to be working so far. (keeping my fingers crossed) I have started trying to eat more healthy foods and take better care of myself.
Today is my 36th Birthday and that means I am no longer closer to 30, but instead pushing closer and closer to 40!!
Oh My!
Well, I need to wake Brandon up and get him dressed. Will update when we get back.
Take care and God Bless
Sunday, January 29, 2006 7:35 AM CST
Brandon's surgery went great!
NO MORE BROVIAC!!!!
We had to be at the hospital at 7am on Friday morning and stopped by to see his nurse Amy Heidotten before going to the 6th floor. We hadn't seen her in so long because she works nights. "It was great seeing you Amy"
They prepped him for surgery and he got to take his stuffed animal "Bananas" (his monkey) with him. They put an arm band on Bananas also and Brandon was happy. Bananas has been with Brandon since before he was diagnosed. He has slept with us every single night!
Dr. Foglia talked to us before the surgery about possibly having to make an incision about 3 inches above his Broviac site to be able to get the Broviac out. There is an inflated "bubble" there to help keep the Broviac in place so it couldn't be pulled out as easily.
They ended up having to cut him because the skin had attached itself to it so much. He came out of surgery with a gauge on his chest, so we haven't actually seen the site yet.
When he woke up he said "Where's my Broviac?" We told him it was gone. He asked if he could see and when we showed him he smiled great big. Then he looked over at Bananas and the surgery team had put a mask on Bananas and made him a Broviac! Brandon said "Look, my Brovivac (as he says it) jumped out of my chest and went in Bananas!!!" He was so amazed! He doesn't want to take it off him because now he gets to "flush" Bananas every night with an empty Heparin syringe.
He was pretty sore Friday evening and Saturday. He also woke up with a big fever blister yesterday morning. We got home Friday afternoon around 3pm. Sorry for not updating then, but I haven't been feeling very well. It seems I can't eat anything anymore without being miserable. I have lost 10 pounds now.
Anyway, Brandon likes for me say every night that I need to flush him, and then he shows me his chest and I act like I forgot it was gone. He thinks it is funny!
He is so happy it is out. I was worried he may not be. He went without a shirt yesterday at my parents house for over 30 minutes which is something he hasn't done in over 2 years. He would NEVER go without a shirt because of his Broviac.
So the (more) exciting news...we get to take the dressing off his chest today and he finally gets to take his first official bath! We can't wait! We are going to do this this afternoon about the time we think we left the hospital just to be safe!
I will try to post some new pictures this week.
Take care and God Bless
Wednesday, January 25, 2006 10:44 PM CST
Today went pretty well. I had my doctors appointment in Cape so mom and Brandon went with me. Things were going well until my Irritable Bowel started acting up 30 minutes before my appointment! I guess it was meant to be. The Doctor got to see first hand what I have been going through. This episode lasted about 1 hour 45 minutes. It was pretty rough. I am having a Colonoscopy done on Tuesday of next week. Can you believe that I actually can't wait to have it? That is how miserable I have been!!!
Well, we leave tomorrow to head up to St. Louis. When I was flushing his Broviac tonight I told him only one more night of doing this! He smiled great big, but didn't say much. I will find out in the morning what time his surgery is set for. I think he is still one of the first, so it should be around 8am. I am so excited!!! My little boy is going through yet another life changing experience. My mom bought him a pair of Old Navy swimming trunks today. They are so cute!
Well, I am very tired and it is getting late. Sorry for such a quick update...I will write again once we get home Friday evening.
Keep Brandon in your prayers for his surgery Friday morning!
Take care and God Bless
Saturday, January 21, 2006 8:21 AM CST
Brandon has still been feeling pretty good. That nasty cough I guess will hang on from what Faith's mom said in the guest book. "Hi Faith" :) He is still sleeping right now so I thought I would give a quick update.
Thanks so much Carrie for the tip on the "magic creme". We will for sure use it. I was wondering...do you use a tegaderm to secure it in? I have some small ones, but may need to order more from our health care supplier. They would always put the "magic creme" on Brandon's back before a bone marrow aspiration or spinal tap... Brandon said he wants Kristopher to come to his log house when it finished. :}
Today is going to be a rest day for us I think. Not much to do but watch some movies and play games. We hope everyone is staying well with all this crazy weather we are having. Rayni's mom Michelle told me there is a high flu alert in town so everyone be cautious!
Well, I will close for now, Brandon is stirring and that means chocolate milk and breakfast time! ha ha
Take care and God Bless
Thursday, January 19, 2006 10:39 PM CST
Hello everyone
Brandon has been doing well lately. He is still battling his URI, but it seems to be getting a little better. He still just has this cough that won't go away! We have been keeping him in as much as possible. It has been so yucky out lately with all the rain and wind that he can't go outside either so he is pretty bummed out about that.
I do have some VERY exciting news!!!!!!
Brandon is getting his Broviac out on January 27th!! That is only a week from tomorrow! I just can't believe it. It really hasn't sunk in yet. He says he doesn't want it out and he is having a hard time understanding it all. He was so young when he got it, that it is all he remembers! We keep telling him once it's out he can start taking baths and he can go swimming this summer and finally get a puppy once we get our house finished. (a dog always scared me because of it chewing or pulling on his Broviac!)
Also, his skin where his dressing is, is so raw and I will be glad when he can start going without a shirt. He won't now because he doesn't want anyone to see it. :(
OH - at clinic last Monday they couldn't draw blood from his Broviac and finally had to stick him in the arm. He was screaming so hard he jerked and they had to restick him in the other arm. That is going to be our only problem with the Broviac being gone...our monthly lab draws. He will have to be stuck every month. Hopefully he will do better as time goes on. (I know they aren't fun at all though, so I don't blame the sweetie from crying!!)
I have been having a lot of problems with my IBS (irritable bowel syndrome) it has been flaring up every three days and I have been miserable! I am going to a Gastroenterologist on January 25th in Cape for a consultation, then they will schedule me for the "fun" procedures of an EGD and Colonoscopy. (YUCK) But, I have to go, because I can't go on like this!
****Please pray for a family we were very close to at SLCH. Brandon's good friend Mallory Rujawitz, 4 years old, passed away on December 17th. She had a type of cancer called Neuroblastoma. (the same as his friend Jacob Rudisale we lost year before last) Mallory and her family were very special to us. She was first diagnosed when Brandon had his Brain surgery last February 24th, so the week he was in the hospital we got to know her parents and grandparents very well and talked alot. They are having a VERY difficult time and need our prayers. thank you
I spoke with Brandon's friend Kristopher's mom the other day and he is doing pretty well after his Bone Marrow Tranplant. He developed GVH (graft vs host) of the skin and has a rash all over his body. Please keep them in your prayers as well.
Well, I will close for now...we finally got a computer for the camper and I can update more often. We also have a new email address.
Our new email address is: scottloghomes@semo.net
I lost all of my email addresses from before, so email me with yours so I will have them!
Take care and God Bless
Wednesday, January 4, 2006 11:36 AM CST
Sorry for the delay in updating. We have had quite a bit going on lately.
Brandon has been under the weather for the last 2 weeks and still isn't feeling much better. He has an Upper Respiratory Infection, Rhinitis and a terrible cough! He is currently on three different prescriptions to try and get him well. Luckily, we have been able to keep him at home instead of going to SLCH to be admitted. This is first time I have had to take care of him myself without being in the hospital while he is sick. His cough is so deep and his nose is running and you don't even WANT to know what is coming out of it! ha ha He hasn't been sleeping well because of the coughing and blowing and looks really pale and dark under his eyes again.
His next appointment at clinic is Monday Jan. 9th. I am looking forward to going so they can check him out. Since he is off chemo and we can now take him to our local Pediatrician for the minor things such as this. We just have to watch him close to be sure he doesn't develop pneumonia or get dehydrated. His appetite has been poor, so we are pushing as much fluids as possible. They did his counts last Tuesday in the Emergency Room here and his WBC was 6.5. At clinic last month it was 4.0. Hopefully it will be back down this coming Monday. I don't want it to get much higher (that scares me) They said it was elevated because he is trying to fight off this URI he has. He has had diarrhea and a little nausea, but nothing serious.
His right leg is giving him a lot more problems in the last couple of weeks. Mike and I have been up several nights rubbing it and today it is bothering him again.
I pray so hard everything is alright. The thought of him relapsing scares me to death!!! But we have to stay positive.
**Brandon had a wonderful Christmas. We had the Rayni Day Miracle Christmas party on Dec. 22nd and it was great. "Santa" brought Brandon all of the Spiderman accessories for his bathroom for our new house. He was so excited. He also enjoyed spending time with Rayni, Faith, Cattarah, Tressa and Jordan.
We had Christmas with Mike's family on Christmas Eve and then Santa delivered all of his presents this year my parents house and we had Christmas with them Christmas morning. Our holiday was great getting to be with all of our families and everyone being healthy for a change.
**We are digging the footings for our house this weekend. My dad and Mike have been working hard on getting everything ready. We are getting very excited.
Well, I will close for now.. I will update Tuesday after coming home from clinic.
Take care and God Bless
Friday, December 9, 2005 6:37 PM CST
Happy Holidays everyone!
Brandon received a great report on Monday. His ANC was 2280, and the rest of his counts were just perfect. He weighed "38 pounds"!! I couldn't believe it! He has gained 4 pounds since last months visit. He got his IVIG and breathing treatment. They drew labs to check his IGG level, but we haven't got the results back yet. I am going to call them on Monday to find out what they are. Depending on them will determine when he gets his Broviac out. We are so excited!
After he gets it out, we still have to go to clinic monthly for a year, then it goes to every 2 or 3 months. They will have to draw blood monthly either out of his finger or arm. (That will be the only difficult part of the whole thing)!
It has been so cold lately, but we are staying warm. Brandon went out yesterday for about 20 minutes to play in the snow. He was wrapped up so tight he could barely bend over and touch the ground! ha ha
I am finally starting to feel better after our accident. I am still very sore where the cup holder hit me in my ribs, but I will make it! :)
They finished the trees on Tuesday and we are burning the pile down where we are going to build. We are hoping it burns down in about a week, so we can get started on the footings! We are so excited!
We hope everyone has a wonderful holiday season. Hopefully everyone stays healthy!
(please continue to keep us in your prayers for adopting}
Take care and God Bless
Friday, December 2, 2005 8:26 AM CST
Things have been going good with Brandon. He has been feeling very well despite everyone around us getting the stomach bug that has been going around. Mike got sick Wednesday with a high fever of 101.9, vomiting and diarrhea. He feels better now. Brandon has stayed over here at my parents house the last 3 nights (I have stayed the last two).
Brandon and I had an accident Tuesday in the golf cart. We were taking our neighbor her mail and paper and when we got to her house we parked about a car and a half length behind her car. I got out real quick to run her her mail, and as I was running back, Brandon stood up and floored the gas. (he thought he would drive and it would be funny) I tried to get to the brake, but it was going around 10 miles an hour when I reached the driver side. I got my right knee in, my right hand on his stomach, and my left hand on the wheel. My left leg was dragging the gravel. I knew if I let go of the wheel to try and reach the brake I would fall out, so I just tried to steer the golf cart away from her car. I was screaming "Brandon, take your foot off the gas", but I think he was in shock from what was going on, and just had it floored. I remember looking at the brake realizing I couldn't reach it, looking at her car and then looking at him. We then rammed into the back of her car, the bumper of her car ramming into the golf cart so far it almost came through the front. I looked at Brandon and I know God was watching him and protecting him, because he didn't get hurt at all!!! (just one little bruise on his knee). I checked him out all over to be sure he wasn't hurt and he said he was fine. He never cried, just looked at me and asked me if I was alright. I was screaming and crying because I thought he was hurt and my entire right side was burning on the inside. I couldn't stand up straight. I didn't care that I was hurt, as long as he was okay. Mrs. Powers called my mom and she drove up to try and get the golf cart out of her car. She finally did and we finally got in touch with Mike. My mom and Brandon drove me to the Emergency Room where Mike met us. My dad met us there also and he kept Brandon in the truck until they made sure I was okay. My blood pressure was 132 over 105 and I was in so much pain that I could not lay still. They started an IV and did a chest x-ray and CT of my chest and pelvis to be sure I didn't collapse my right lung or lacerate my liver or break a rib. Thank goodness everything turned out alright. They gave me phenergan for my vomiting and then Demerol for my pain. It was the worst pain I have ever felt. The doctor said the muscles seperated from my bones and that is why I feel the burning sensation. I had two bruises and scrapes immediately and today I am still as sore as I was on Tuesday. My right side is covered in bruises and under both arms I have bruises.
I knew I should have taken the key out of the golf cart, but it was an accident and I am just so thankful that Brandon is alright. I couldn't imagine if he would have gotten hurt ( which he really should have considering how hard we hit) I know God was protecting my baby!
Anyway...we go to clinic on Monday to get IVIG and his breathing treatment and hopefully find out when he is getting his Broviac out. He had diarrhea last night, but has not thrown up and seems to feel pretty good today. We are going to stay at the camper tonight since Mike feels better.
Our modular home is gone and we have started cutting trees. We have our camper down here at my parents house which is convenient all the way around.
I will update after we get back from clinic.
Brandon is staying home and not going anywhere this time of year. We just can't risk him getting any of the yucky illnesses going around.
Take care and God Bless
Friday, November 11, 2005 8:15 PM CST
Brandon went to SLCH Monday and got a great report. His ANC was 3060 which is right where it should be at this time. He received his breathing treatment and IVIG. Dr. Wilson said he will get them at least two more months, then they will check his IGG level again and hopefully he will be getting his Broviac out around February or March as planned. We can't wait.
Well, we got all moved out of our house this last week and are now living in the Camper. It is small, but as Brandon says, "It's cozy". They are supposed to be coming to get the Modular home on Monday. We are excited. We have our house plans ready and can't wait to start cutting down trees to get ready for it all.
There are a bunch of sickness going around now, so everyone should be very cautious this time of year. Brandon is staying close to home and only goes out when he has to. My mom and I took Brandon yesterday to get his first Flu shot. It was not fun. He did not like it at all. He didn't understand why they couldn't put it in his Broviac. He ran a little fever and it is now 99, but hopefully he will feel better soon. Since he just got his IVIG on Monday I felt it was the perfect time for him to get it.
He got stung by a yellow jacket last Sunday while we were cleaning out the house. He was crawling on the floor and put his hand down on top of one. It stung him on his middle finger. It was so sad. He cried and cried. I ran and got the Benadryl and then we put a cold rag on it. It swelled up very big, but we watched him close and he did okay after that.
To top it off, he was out in the yard and of all the people for this to happen to (it would have to be Brandon), but a hickory nut fell and hit him on top of the head. He screamed and started crying so hard. We couldn't figure out what had happened at first.
*If something is going to happen, it seems like it always happens to Brandon*
Well, I better go, I will be updating the website from my parents house from now on until we get the house done.
Take care and God Bless
Wednesday, November 2, 2005 8:24 PM CST
Hello everyone!
Brandon is still doing great! He is weighing an average 35 to 36 lbs and keeps growing so tall! I am having a hard time keeping him in clothes! ha ha
His next appointment in St. Louis is Monday Nov. 7th.
So much has happened since I last updated (which is also why I haven't updated!)
We sold our house last week and the closing was this past Monday. We bought a Camper on Tuesday, got it moved in last night, today we started packing the house and then cleaned the camper. I started moving a few things in there tonight. I really do like it a lot and Brandon loves it! He is excited about living in it. (we are hoping to have our Log Home done within 6 months if things go well). They are supposed to move the house on the 16th unless we get finished moving out, then I will call the buyers and have them see if they can get it moved sooner.
I am so exhausted!! I have been getting up around 5am every morning and getting busy. I can't wait until we are done.
Brandon did so well during his testing at Early Childhood. He scored very high on all of his tests. We are so proud of him.
Well, I am going to bed...
By the way. I won't have email for a while, but I will still update the website at my parents house. I don't have room in the camper for the computer (sad face!)
I am going to miss it for a few months!
Take care and God Bless
Thursday, October 20, 2005 10:18 PM CDT
Today is a very special day. Today we celebrate Brandon's 2 year in remission anniversary. I still remember this day 2 years ago when Dr. Hulbert and Debbie came in and told us that Brandon's cancer cells in his Bone Marrow were down to 4%. If they would have been 5% or higher, he would have started the process for a Bone Marrow Transplant. God has been good to us.
We didn't do much today..it rained off and on all day, so we took a long nap this afternoon. It was nice. I ran some errands this morning, but Brandon stayed with his PaPa.
Brandon's Great Granny Pete Pete (my Grandma Jeffries) spent the night with my parents the last two nights, so we got to spend a lot of time with her. I fixed supper last night and she got to watch Brandon play outside Tuesday night. She is okay, but was not feeling well. (she had the shingles several months ago and developed severe bone/muscle pain in her left arm) She has been going to the Pain Clinic daily for injections which make her sleepy. She was unable to stay by herself.
Not much else has been going on. I have been organizing some of Brandon's pictures, hoping to maybe start scrapbooking this winter again. I am so far behind!
We have family coming in from California this weekend, and hopefully we will get to see them.
Take care and God Bless
Tuesday, October 18, 2005 8:33 AM CDT
Things have been going great around the Scott house lately. Brandon has been feeling so good, and enjoying himself so much playing outside. I'm glad the weather has been so perfect for outdoor fun. Everyday Brandon and his PaPa play outside. We have had some people interested in our house, but still haven't sold it yet. I am right now printing off flyers to put up with the info on our house on them.
You wouldn't believe much Brandon has grown up these past few weeks. He is getting so big! And he is very funny too. At this age, he is coming up with so many funny things to say and do.
If anyone would like a Ronald McDonald House to sit out to put tabs in, PLEASE let me know...I have several and would love to mail you some. We are really hoping to collect a bunch before next year!!
We learned some sad news yesterday....One of our Rayni Day Miracle Club members passed away on Saturday. Kaycey Anne Gonzalez (age 15). She received a double lung and heart transplant over a year ago, then came down with pneumonia which damaged her new lungs. While on the list for another double lung transplant, her heart began to weaken, which was irreversible. Since her heart was growing weaker and weaker, she was taken off the waiting list for the new transplant. She understood the reason, because she knew her heart was not strong enough to go through another surgery and survive. She may have only been 15, but she was so much "older" and "brave". We met Kaycey last year at the Children's Miracle Network Concert held here in Poplar Bluff. She was so sweet. She has a younger sister who is 6, and they were best friends. Rayni and Kaycey were very close and had a lot in common because Kaycey got her double lung transplant; and Rayni was on the waiting list for one. Rayni is having a hard time with Kaycey's death...please keep her in your prayers. She is having problems dealing with the fact that she prayed so hard for Kaycey to get well, and God took her away anyway. (I cried so hard last night after Michelle called me - not just for Kaycey, but for Rayni also) Her visitation is today. Kaycey's hometown is Maryland Heights, MO (just outside St. Louis). Please keep Kaycey's family in your prayers.
We feel so grateful and are so thankful for our son. We have learned the hard way not to take life for granted. We live each day like there may be no tomorrow.
If we all did, maybe this world would be so much better. Seeing all these children in the Miracle Club and at Children's Hospital with pain in their eyes, but keeping smiles on their faces will warm your heart and change you forever...it did us.
**I have posted some new pictures**
Take Care and God Bless
Tuesday, October 11, 2005 10:05 PM CDT
I CAN NOT BELIEVE MY SON TURNED "4" YEARS OLD TODAY!!! It seems like yesterday he came into our lives. So much has happened to Brandon over the last four years, and thank God he has overcome it all.
We went to clinic yesterday and his lab results were great. His ANC is 3168 and all of his other counts looked good. He received his IVIG and breathing treatment. We go back next month on the 7th. If his IGG levels are good in 2 months, they may consider taking his Broviac out around January (maybe)
Today is also Brandon's nurse Amy Hermann's Birthday..."Happy Birthday Amy"!!
We had a small get together this year for Brandon's birthday. Only our immediate families came. Michelle and Rayni stopped by earlier today and brought Brandon some of the cutest gifts. He also received so much stuff from the family! Brandon and Hunter opened his gifts together which was hilarious! There was paper flying everywhere and I was having trouble keeping up with who bought what. He got some cute clothes, a learning V-tech system, Spiderman toys (the theme of his party), a new suitcase, 10 movies and some money. He was so happy with all of his gifts! He is in the living room now playing with everything.
We went last Saturday to St. Louis to the Ronald McDonald house for the Pull Tab Pandemonium. Brandon turned in 148 lbs of tabs! He was so proud. Thanks to everyone who has collected them for him. Faith turned in over 300 lbs. We are already starting to collect for next year, so if anyone reading drinks can sodas, pull off them tabs and throw them in a ziplock bag for us!! We want to WIN next year!!!
I will post some pics tomorrow
Take care and God Bless
Sunday, October 2, 2005 10:29 PM CDT
We are finally starting to slow down a little bit!! What a busy few weeks we have had! Sesame Street last Thursday was so much fun for everyone! All the kids danced and had a great time. Hunter and Brandon enjoyed spending the day together. Our trip to Branson last Friday was wonderful! It was so relaxing just traveling there and talking with my parents, Mike and Brandon. We went to see the Presleys Friday night and Brandon fell for one of the girls on stage. She is 10 years old. I took him up during intermission and he got her autograph and picture taken with her. He was blushing when he talked to her. It was so cute. He kept wanting to go up on stage and dance with her. Saturday we went to Silver Dollar City. The weather was perfect and we had a blast. Brandon got to ride the "Fire In The Hole". I couldn't believe he was tall enough. My mom was so scared for him to ride it. (she won't ride) ha ha He was so brave. He sat with his PaPa and Mike and I rode right behind them. He loved it! Now that we are home he plays Fire In The Hole all the time by sliding down covers pretending they are the roller coaster. We went to Springfield Sunday and to Bass Pro Shop. We toured the Wildlife sections to see all the animals. I took tons of pictures. Brandon got to play Virtual Fishing which he really enjoyed. We got home that evening. It was a great and memorable weekend.
This past week we got ready for the Rayni Day Miracle Club Fundraiser. It was this past Friday and Saturday. I didn't let Brandon go because he was so so wore out from the week before. The fundraiser did very well. I don't know the grand total yet, but we made more than last year for sure. I am so tired though. It was hard work this year getting ready for it. So many companies donated such great items for the silent auction. Mike won me a gorgeous Guardian Angel necklace. I am so proud of it! He also won me a set of throw pillows that Rowe Furniture donated and we are going to save them for the new house.
Well, I better go, Brandon is getting ready for bed and I need to get ready myself. We are going up next weekend to St. Louis for the Pull Tab turn in at the Ronald McDonald House (that is Saturday) He goes back to clinic on Monday October 10th. THEN...on the 11th he turns "4"!!!!!! I can't believe it!
Take care and God Bless
Thursday, September 22, 2005 7:13 AM CDT
Just wanted to give a quick update. I am taking Brandon to see Sesame Street Live in Cape today with the Miracle Club. Mike's mom and Brandon's cousin Hunter are getting to go with us. We are getting ready to leave. It starts at 10:30am. I will update tonight. Then we are leaving tomorrow morning for Branson (with my parents). We have free tickets to Silver Dollar City through Make-A-Wish "Give Kids the World" Resort. What a busy weekend ahead of us. We can't wait!!
Take care and God Bless
Monday, September 19, 2005 10:15 AM CDT
Brandon has had another wonderful week! He has felt so good and we have no complaints.
It seems so odd not having anything negative to say about his health. For so many months, day after day I woke up anticipating what was he was going to feel like when he got out of bed. You have no idea how great I feel seeing him run around playing, getting into EVERYTHING and continuing to have that same beautiful smile he has never lost! We are so proud of Brandon. These last 2 years have been rough and he has fought so hard to be where he is today. He is my inspiration!
Today was Miss Ruth's day to come and draw blood. We are going to miss here coming weekly to see Brandon. He loves her so much! I talked to her Saturday and invited her over anytime she could come. We know we will keep in good contact with her.
I have been taking a lot of pictures lately and need to post some on the website. You won't believe how Brandon's hair has come back in. It seems to be a little darker and is covering up his scar very well. He fell yesterday and hurt the back of his head, but luckily he was okay. It scared him more than anything. Now that he feels good, he is all over the place! One thing that I have noticed a change in is his running. He has been running more and more and isn't getting tired like he used to. Also we would have to ALWAYS give him Morphine when he would just walk a lot, then it went to Tylenol these last couple of months, and now he is running everywhere and doesn't complain of leg cramps hardly at all. He loves to run up and down the road to my parents house and for those who have been here knows that is a good sized slope to run up.
Well, I better go, Brandon is getting hungry and I am going to take him to town for lunch!
Take care and God Bless
Monday, September 12, 2005 10:32 PM CDT
No words can express what kind of day we had today.
September 7th of this month marked the 2 year anniversary of Brandon being diagnosed. Today was a joyous day because his 2 year chemotherapy treatment plan ended. That's right....no more chemotherapy, no more steroids!! (knock on wood) I say that because this next year to come will be Brandon's highest risk for relapse. But we will just keep praying that he will grow stronger each day and his immune system builds up the way it is supposed to. We will still go to clinic once a month for counts, his breathing treatment and IVIG. They will continue this for 3 months for sure, then check his immune level. He will "hopefully" get his Broviac out in 4 to 6 months!
Our lives changed 2 years ago...and again today. I am happy and I am nervous! I have given him chemo every day for 2 years and it is hard knowing that I won't be doing that anymore. In a way I felt like I was helping to prevent relapse; but I know if he relapsed it would happen regardless.
The picture I posted was from today when all the nurses came in to sing to Brandon and they gave him two presents; a remote control car and a puzzle. Both my parents and Mike's parents came up for clinic. Pictured are: (left to right) Carol, Cheryl, Sue, Grandpa Kenny, Mike, Grandma Dottie, Me, Brandon (of course), Granny Martha, PaPa Tommy, Amy and Chris.
We are going to miss you Sue!
Brandon had a Spinal Tap and Bone Marrow today and both procedures came back clear! Dr. Wilson said everything looked great. He did such a great job with Brandon today. We really do like him a lot.
We are happy that Amy Hermann will be Brandon's new nurse in clinic. He is so close to both Sue and Amy.
All day Brandon has told everybody he sees: "Hey, guess what? No more Chemo!" and then smiles from ear to ear! We have all cried off and on all day long from joy! It is so hard to believe. The nurses and doctors at SLCH are our second family and we love them all so very much! God has been so good to our family by bringing such wonderful people into our lives these last 2 years! From the hospital staff, other "cancer" families, the Rayni Day Miracle Club (plus many others) we have been so blessed!! We will continue to keep praying that Brandon feels well because this winter is going to be very critical for Brandon to get through without getting sick. His immune system is no different than it was last year and we have to be very cautious when it comes to being around others during cold and flu season. He knows that things are getting ready to change as far as playing with other children and going to Wal-Mart as we have been. Our goal is to stay "sick free" all winter long! :}
Well, I better go; it is getting late and we have had a long day. OH his ANC today was 2686...perfect! No more counts until next month, October 10th - our next clinic date. It is going to be hard not having counts done every week!! We will also miss Miss Ruth!!!! :{
Take care and God Bless
Monday, September 5, 2005 10:25 PM CDT
Happy Labor Day!
Miss Ruth came today to draw labs and thank goodness she was able to draw blood out of his line. He was so happy! We have had such a great week! We took Michelle and Rayni out to eat Saturday for Michelle's Birthday...mexican our favorite. Brandon ate so much white cheese dip! Yesterday we hung around the house and Mike went with some friends to "Cloud 9" in West Plains to ride 4-wheelers. He took pictures and it was so pretty there. We are planning on going with him soon I think. We cooked out last night with my parents in Brandon's Hide Out. We had hotdogs and marshmallows again.
Today when Mike got home we went to Michelle and Rayni's for a cook out. We had such a great time. Brandon was so excited about going. Everything was so good. When we left we went by Mike's parent's and visited with them for a while. We have been so active lately and I love it! We are trying to do as much as we can before cold and flu season sets in!
His ANC today was 1448...just perfect. His WBC dropped down to 2.5 Tonight will "hopefully" be his last dose of Methotrexate I will have to give him! YEAH!!!! He takes that chemo every Monday.
Well, I need to go. Mike just said Brandon was about to fall asleep and I need to give him his doses of meds before bed.
*Please keep us in your prayers for adopting*
Take care and God Bless
Wednesday, August 31, 2005 8:46 AM CDT
Miss Ruth came Monday and after attempting to draw blood for more than 30 minutes out of his Broviac, had to finally draw it out of his arm. Sometimes his Broviac will act up and it will flush, but not draw back. She was so upset to have to do it; but it just couldn't be helped. He got so upset and cried so hard that he is now so hoarse he can barely talk!
His counts came back kind of high...his WBC is 6.8 and his ANC is 6072. It is usually around 2000 when he comes off steroids, but Dr. Wilson says everything is okay. This last week his steroids really did affect him differently. He was very hyper, couldn't sleep and he ATE all the time. Last Monday when we were at clinic he weighed 31 3/4 pounds. This Monday he weighed 35 pounds! His little belly is so big and his cheeks are so round! He should start losing the weight this week though...he is so cute.
He took his last dose of Steroids on Sunday morning and it is "hopefully" the last dose he will ever take...when I gave it to him he said "Mom, have you been wishing this for so long"? It made me cry of course. He then hugged me and gave me that awesome smile of his.
He has been feeling really good lately. We went to see his new cousins this past weekend. Brandon and Hunter are so funny together these days. They run around chasing each other and take turns singing songs on "stage" and clap for each other. They are so cute. Logan and Ian are really growing up fast! I will post some pictures of them soon.
Brandon's PaPa made him a "Hide Out" in the woods on Monday afternoon. It is so neat. He hung a camo tarp up, a lantern, built a fire with rocks around it, and cleared a path to the spot. We all had hotdogs and marshmellows that evening. They painted a sign yesterday that they hung up saying "Brandon's Hide Out" He is so proud of it. (it is just to the side of our house in between ours and my parents - but you would think through Brandon's eyes it is deep in the woods!!) ha ha
As far as I know, we are having Brandon's Birthday party on October 9th. I will let everyone know for sure within the week.
Well, I better go, we are getting ready to go to town.
Take care and God Bless
Tuesday, August 23, 2005 8:27 PM CDT
We have had such a busy weekend!! We went to see Brandon's new cousin Ian Michael over the weekend and I can't believe he is already a month old today! He is growing so fast. Yesterday Brandon had to go to clinic at SLCH. Dr. Wilson did his Spinal Tap which went well. They found no cells present in his spinal fluid! yeah!!
He had his breathing treatment, Vincristine and IVIG also. I can't believe in only 3 weeks on Sept 12th will be Brandon's last day at clinic to receive Chemotherapy!! A long 2 years in the waiting!! We will still go to clinic once a month, but only for a check up, his counts, IVIG and his breathing treatment. His counts yesterday were great at 1932. His back was pretty sore last night and today, but he is feeling better. He started his steroids today and took a 3 hour nap today!! We are so thankful that Brandon is feeling good and things are looking on the bright side for a change! God has been so good to us lately.
***Some more great news*** Mike's other sister, Shaunda had her baby yesterday afternoon. We tried so hard to get back from St. Louis in time, but just didn't make it! Brandon has another new baby cousin and I have another new nephew!! His name is Logan Charles Hite. Dale and Shaunda are so proud and he is sooo cute! We went up and saw him last night (we left Brandon with my parents because he was really wore out from his treatments) I took Brandon up to the hospital this morning to see him. Brandon loves the new babies. He is always wanting to hold them!
Well, I better go, I have lot of house work to catch up on!
**Please keep us in your prayers for adopting** Thanks!!
Take care and God Bless
Wednesday, August 17, 2005 9:41 AM CDT
Miss Ruth came Monday for labs. His ANC was 1613. He has been feeling pretty good lately, except that he has 4 mouth sores. I think it is from just being the end of the month and needs more IVIG. I started giving him Acyclovir and he has been using his Nystatin again. He has also started stuttering again. This time it is worse than before. He gets so aggrevated when he can't get the words out. He just doesn't really talk much. It makes me cry. He has went from talking all the time, to not talking much at all. I told Sue about it Monday and she talked to Dr. Hyashi and they just want me to keep a close eye on it. We go back to clinic on Monday at 8am. He will be getting a Spinal Tap that day along with the rest of his monthly treatments.
Faith and her family are back from their trip to Branson. I just read her website and it sounds like they had wonderful time. I am so glad.
Brandon's Aunt Shaunda went to the hospital last night when her water started breaking. We thought his little cousin Logan Charles would be born, but they ended up sending her back home until it breaks completely. We were all disappointed for her because we know how excited she is to have him. If she doesn't have him by Sunday night, they are going to enduce her on Monday. (we have to take Brandon to clinic so we won't be here) :{ We hope she goes into labor this week so we won't miss it! Please keep her and Dale in your prayers.
Take care and God Bless
Thursday, August 11, 2005 8:54 PM CDT
Wow! What a fun filled week we have had!
Yesterday me, Brandon, my mom, Michelle & Rayni went up to St. Louis together. We got there around noon and had lunch at Chuck E. Cheese (Brandon's favorite). We then went to South County Mall and then to the Dollar Tree. It was the biggest Dollar Tree I have ever seen! It started raining when we were getting ready to leave, and when I say rain; I mean R-A-I-N!!!! We got soaked! It was fun though! Chuck, Kristie & Faith met us there then we went to the Savvis Center to see "The Wiggles" in concert with a few more families from the Rayni Day Miracle Club. The kids had a wonderful time! (so did all the parents) We just let it all go and danced and sang along with the kids and the Wiggles! ha ha The concert didn't start until 6:30pm and when it was over, we didn't really want to leave. We all just stood around and talked as long as we could until they rushed us along! I love spending time with all the families. We got home around midnight and I think Michelle and I talked the whole way home. My voice is so hoarse today from talking and singing!!
Brandon is still feeling good. He has a little belly ache tonight, but hopefully he will feel better in the morning. Mike, Brandon and I went to dinner tonight at Colton's which was nice.
Remember when I told you all about Brandon's shaking problem? Well, today we sat down and worked on writing again and he did very well. He shook very bad, but I encouraged him that he was doing great and now he can write a "B" "R" "O" & "P". He is very proud of himself. He keeps saying "B's are easy mom". He is so cute. I bought a preschool learning book that I am working from. He is doing well.
Well, I better go - I am updating the pictures with ones from the concert. ( the little girl in the green shirt (dancing with Brandon and Rayni is Jessica. She is a member of the miracle club and has a Brain Tumor) She is so sweet and lovable! And the little girl sitting her moms lap in the group picture (her mom is wearing pink) is Lanae (not sure on the spelling) She has had two liver transplants and I am not sure what her other diagnosis is. She is very sweet.
Take care and God Bless
Thursday, August 11, 2005 8:54 PM CDT
Wow! What a fun filled week we have had!
Yesterday me, Brandon, my mom, Michelle & Rayni went up to St. Louis together. We got there around noon and had lunch at Chuck E. Cheese (Brandon's favorite). We then went to South County Mall and then to the Dollar Tree. It was the biggest Dollar Tree I have ever seen! It started raining when we were getting ready to leave, and when I say rain; I mean R-A-I-N!!!! We got soaked! It was fun though! Chuck, Kristie & Faith met us there then we went to the Savvis Center to see "The Wiggles" in concert with a few more families from the Rayni Day Miracle Club. The kids had a wonderful time! (so did all the parents) We just let it all go and danced and sang along with the kids and the Wiggles! ha ha The concert didn't start until 6:30pm and when it was over, we didn't really want to leave. We all just stood around and talked as long as we could until they rushed us along! I love spending time with all the families. We got home around midnight and I think Michelle and I talked the whole way home. My voice is so hoarse today from talking and singing!!
Brandon is still feeling good. He has a little belly ache tonight, but hopefully he will feel better in the morning. Mike, Brandon and I went to dinner tonight at Colton's which was nice.
Remember when I told you all about Brandon's shaking problem? Well, today we sat down and worked on writing again and he did very well. He shook very bad, but I encouraged him that he was doing great and now he can write a "B" "R" "O" & "P". He is very proud of himself. He keeps saying "B's are easy mom". He is so cute. I bought a preschool learning book that I am working from. He is doing well.
Well, I better go - I am updating the pictures with ones from the concert. ( the little girl in the green shirt (dancing with Brandon and Rayni is Jessica. She is a member of the miracle club and has a Brain Tumor) She is so sweet and lovable! And the little girl sitting her moms lap in the group picture (her mom is wearing pink) is Lanae (not sure on the spelling) She has had two liver transplants and I am not sure what her other diagnosis is. She is very sweet.
Take care and God Bless
Monday, August 8, 2005 10:08 AM CDT
So we had a wonderful time yesterday at the Cardinals Game. I wasn't sure if they would televise it or not; and after we got there I knew why they didn't. They had 4 different ceremonies going on that day. They honored transplant patients, bone marrow transplant patients and current cancer patients. All of their ages varied from 40 to 70 and Brandon was of course the youngest at 3. It was so exciting. I am supposed to be getting the video footage of his first pitch within the next week along with some pictures they took there. He waved to the crowd with both arms held high and just smiled so big when he was on the Jumbo-tron. You could tell he was so happy. He looked so cute in his Cardinals uniform! I wish everyone could have been there to see him. I know for Mike and myself it was an awesome experience walking onto the field and seeing over 50,000 people in the stands. When Brandon threw the ball and everyone started yelling and clapping for him it of course made me cry. What an honor! I will post more pictures soon.
Miss Ruth came this morning and hopefully within the hour I will have his counts. I will update them as soon as I get them. Hopefully they are good. He has been feeling great still, although his right leg has been giving some problems hurting a lot. I have just been giving him Tylenol for the pain instead of Morphine (no Morphine for almost 2 months now) :} His bowels are still working great and he has had a good appetite.
OH! He did get to eat his BIG hotdog yesterday...2 of them...along with part of a cheeseburger, nachos, two Cokes and cotton candy! It for sure wasn't a cheap day at the Ballpark! ha ha Everything there is so expensive!!
He had such a good time!!
Take care and God Bless
Thursday, August 4, 2005 7:56 PM CDT
Brandon had a really good day today. We really didn't do much besides play, read some books and watch cartoons. He hasn't had a temp and still having good bowel movements.
So are you ready for some exciting news?!?....
Brandon has been asked to throw out the first pitch at the St. Louis Cardinals vs. Atlanta Braves game this Sunday afternoon at 1:15pm!!! We are so excited!! It all started when Kate Guess from Child Life Services at SLCH called and offered us free tickets to the game through an organization called "CureSearch - Childhood Cancer Research". She gave me a contact person to call there and when I did we started talking about Brandon and he then said, "Well, I am going to make him our First Pitch Kid". I didn't know what that meant at the time. Then after he told me the details I started freaking out!! I emailed information on Brandon's life and some pictures of him. He forwarded them to Marty Hendin the Vice President of the Cardinals organization. Mr. Hendin then called ME today and gave me the details on what time we needed to be there, where to meet him etc. This Sunday is Childhood Cancer Awareness day at the Park. All of the players will be wearing Gold Ribbons and the bases are supposed to have Gold Ribbons on them. Major League Baseball has donated 1 million tickets this season and the profits are going to CureSearch Childhood Cancer Foundation and the Boys and Girls Club of America. I cannot believe they have asked Brandon to represent CureSearch and this is really happening. When he throws out the first pitch the players will sign the ball and he gets to keep it. Mike is of course of cloud nine!!! He is going to go out on the field with Brandon when he throws out the first pitch. They had asked us both to go, but I feel this is a real Daddy moment they can both share forever! They are going to talk about Brandon for a little bit and show his picture on the "Jumbo-tron" throughout the game.
I'm not sure if they will televise the first pitch, but Mr. Hendin said they should show it sometime during the game. HOW EXCITING IS THAT?!!!!!!!!!!!!!!!!!
We have been talking to Brandon about going, and all he can talk about is waving to everyone and eating a REALLY big hotdog!! ha ha He has no idea what is going to happen! The game is sold out and I can't wait to see his face when he goes out there and everyone starts clapping for him. (I told Mike our luck right in the middle of it all he will grab himself and say he needs to go pee or something) ha ha ha That is so like him! When he has to go , he has to go!! :)
I am going to take a TON of pictures (of course) and will post them on Monday.
The game starts at 1:15 on Sunday. OH! Mike wanted me to ask that anyone who reads the site and has a VCR could maybe tape the game for us. We don't have a VCR anymore since we got Dish Network and we can't tape anything! We would really appreciate. Just give me a call and let me know!!
Well, I better go, my supper is just getting done.
Take care and God Bless
Wednesday, August 3, 2005 9:54 PM CDT
Brandon has so far had a great week. Miss Ruth came Monday and his counts were good. His ANC was 3910. He woke up Tuesday morning with a little right leg pain so we rubbed it and I gave him some Tylenol. Monday night Michelle & Rayni Worley came over for supper, then Rayni and Brandon played on his new bouncer his Granny & PaPa bought him, then they rode his Hummer. They had such a good time.
We made cookies today and then decorated them. He picked out the Dinosaur cutter for his cookies. He is so into Dinosaurs now. He fell down in the kitchen floor today when he was running and his right leg is hurting right now Mike just told me. I am going to have to go and hook the heating pad up for him.
He is still taking his Mineral Oil nightly and having good bowel movements daily. I am so happy.
Congratulations to Amy Hermann (Brandon's primary nurse when she was on 9West) on getting the position in the Hem/Onc Clinic. We look forward to seeing you the end of this month!
Thanks to everyone for checking the site.
We are still trying to sell our house (it will have to be moved off the land) We are anxious to start our Log Home. Hopefully it will happen soon!
I have some exciting news to share with you all probably tomorrow night or Friday afternoon. I am waiting until I get all the details first. (no...it isn't a baby) I wish it were though. Last night Brandon told Mike "Daddy, I want to adopt a baby so bad!" He will make such a great big brother!! I can't wait!!
Take care and God Bless
Sunday, July 31, 2005 9:40 PM CDT
It is so nice getting to update nothing but good news!! Brandon has had a wonderful week and weekend. We have went shopping, out to eat and went to visit his daddy at the mill. He got to ride the forklift with his Grandpa which he really enjoyed.
Last night Faith's mom Kristie called and Faith, Chuck & Kristie were coming to the Bluff so we met them at Dairy Queen at 8pm. Rayni & Michelle met us there also. Brandon at his 4th hotdog there. (he had 3 for lunch yesterday)! Afterward since Chuck's birthday was today we got a Oreo Ice cream Cake and ate it. We then went to Wal-Mart at 10:00 pm - all of us. We had such a great time. Mike and Chuck went to sporting goods and we shopped in the toys. I had Brandon and Rayni in my cart and they had fun. Kristie found Faith another Tigger (she has over 300 Tiggers in her room!!) Brandon bought her a little Tigger and Rayni a stuffed animal. We finally got home around midnight. What a night out!! After we got home, Brandon ate ANOTHER hotdog!! Since he missed his steroids last month, this past week he was on them and boy can you tell it. He has the "moon pie cheeks" again. He has gained 3 pounds and weighs 33 pounds now! I am so happy!!
Today we went to Mike's sisters house to visit Brandon's new cousin Ian and Hunter. He is so sweet! We ate watermelon and homemade ice cream. We had a good time.
So 3 days ago a stray cat found our house and has adopted us as it's family. We don't know if it is a boy or girl. It is black with beautiful green eyes. Brandon named is (get this) "Orange Bunny Rabbit". How funny!
It won't get near us which is fine by me...I really hope it finds another home soon. We don't need it.
Miss Ruth is coming in the morning so I will update tomorrow with his counts.
Take care and God Bless
Wednesday, July 27, 2005 8:41 AM CDT
Monday's Clinic visit went great! Brandon's ANC came back at 1650 which in my eyes is perfect. He had his breathing treatment, IVIG, Vincristine and started taking his steroids again. Dr. Wilson is now taking care of Brandon because Dr. Monica is off on maternity leave. Brandon really likes Dr. Wilson. Our next appointment is August 22nd and Brandon will be getting a Spinal Tap that day.
Since being released from the hospital Brandon has acted like a whole new boy! He feels so so good and has so much energy. My thoughts are: he had a very bad virus (in his belly) the end of June when he started spiking the high fevers and complaining of his stomach hurting. I think all of the antibiotics built up in his stomach (because when his constipation broke and he started going a lot it was very green) (not to be gross) :) Anyway, after passing the hard stool and cleaning out his system, his temperatures are now GONE and by giving him a Teaspoon of Mineral Oil nightly his bowels are working great and his appetite is back to normal.
You have no idea how happy I am right now. He is of course very pale yesterday and today from the chemo he got Monday (Vincristine & Methotrexate & 6mp), but that is to be expected. He is up watching Blues Clues right now eating his second Zebra Cake for breakfast and drinking V8 juice. (he loves V8)
Another thing that surprised me is how he takes his Mineral Oil. The nurses told me I would have to mix it because it is not pleasant to take, but Brandon just takes half, takes a drink of soda, then takes the other half. He says it has no taste and is not that bad. I am so proud of him.
Thanks to everyone for all of your prayers!!!
****Brandon has a new baby cousin****
Ian Michael Pierce was born yesterday afternoon. Ian's parents are Mike's sister Stephanie and her husband Warren. He is so handsome. I am taking Brandon up to the hospital today to meet him. Hunter is very excited to have a new baby brother!! I will post pictures probably tomorrow of them.
Please remember all the Miracle Club kids in your prayers. They are all so special. "Kacey" a young girl in the RDM club has already had one lung transplant, and after developing pneumonia it damaged her lungs and she now does not qualify another transplant. This is very heart breaking news and they need so much prayer right now.
Brandon's friend Kristopher who relapsed in March of this year (he was diagnosed within 3 weeks of Brandon with T-cell ALL is still in the Bone Marrow Unit after his transplant. He has a rash all over his entire body and when I talked to his dad Kevin last night his temp then was 104.7. They are a wonderful family and we pray things turn around for Kristopher.
Another friend of Brandon's, Mallory has a type of cancer called Neuroblastoma. She took a turn for the worse and was sent to PICU last Wednesday. I talked to her dad Monday and said she has a problem with her heart now that is related to her cancer. She is not doing well.
**I think God has brought these families into our lives for a particular reason and I thank him for that. I wish I could do more for them, but just having someone to talk to means so much.
Brandon's other friend "in memory" Jacob Rudisale who passed away last Easter of Neuroblastoma is still in our thoughts so often. I saw his parents last week and they just adopted a little 11 month old "angel" daughter from China. They named her Abbey. Her birthday is August 17th, which ironically was Jacob's birthday. She is so beautiful. They are so proud of her, yet still in so much grief. They are a wonderful family as well.
Will update soon with more exciting information about some fun stuff we are getting to do this summer and fall!
Take care and God Bless
Friday, July 22, 2005 9:22 AM CDT
We got home yesterday evening and just wanted to say I'm sorry for not updating then, but I was just too tired!!
So...
They did another Abdominal X-ray yesterday morning and thank goodness his colon is finally cleaned out! I know he had around 15 bowel movements Wednesday afternoon and all of them were good. They did his Bone Marrow around 11:30 am and the result...His bone marrow showed "0" cancer cells!!! YEAH!!!!!!! When Debbie came in she said that his marrow looked very healthy. What a blessing!
He hasn't ran a high temp since Wednesday and since finally having a bowel movement he has been up playing, "walking and running" (I have been waiting on that) and eating so well! He is in the living room right now eating a Krispie Kream donut. (we always get him a dozen when we leave St. Louis) He loves them!
He is still on a laxative daily along with having to take a teaspoon of Mineral Oil daily. The mineral oil should keep his colon lined so he can have regular bowel movements. They said his chemotherapy "Vincristine" could cause his bowels to lock up. That is the chemo that causes his leg pain and his nervousness. He can't even hold a crayon or pencil very well when trying to write without shaking so bad that he just stops. He told me the other day when we were working on our alphabet letters that he had "no control". For a three year old to tell you that it breaks your heart! They are going to cut that chemo in half until September. And they may put him on a drug used for seizure patients to help with shaking. I am not sure on the name because they didn't get into it just yet. I want to solve one problem before moving on to the next.
They said all of Brandon's fevers could be caused by several different things. His Brain radiation could cause fevers along with the chemo 6mp he takes nightly. They said not to worry about the temps in the 99's or 100's for right now. They have ran so many tests on him this past month we know it is nothing serious. The doctors at Children's worked so hard on treating Brandon to find out what was going on, and I am so proud of all of them. It took the work of all of the Oncology doctors, FNP, GI doctors, GU doctors and Neurosurgeon all working together to be sure everything on Brandon checked out. He has had every test I can think of done this past month. It was a lot for him to endure, but now we have a peace of mind that he is fine.
***Thank You Thank You Thank You to everyone who has called, checked the website and kept Brandon in your prayers. We know that is what has got him through all of this. You all are so very special to us all!!
Take care and GOD BLESS YOU ALL
Wednesday, July 20, 2005 8:53 PM CDT
The doctors upped Brandon's dose of Miralax (the laxative) to twice a day. I mix it in Applejuice, then we pretend to race him in a drinking contest and he drinks all 4 ounces without any problems at all. He spiked another temp last night of 101.8 so they gave him Tylenol. Right now his temp is 100.2
The doctors and our FNP Debbie (we love her...she is so smart!) talked about Brandon's case for about 30 minutes this morning in rounds to figure out exactly the line of treatment they needed to take for Brandon's case. His temperatures have really got them baffled. He has been running a low grade to high temp for over a good month now. They have found a few things that could be causing them... (1)from radiation..if he is developing the "sleep symdrome" then that could "possibly" cause a low grade fever. (2) the chemo 6mp he takes every night could cause a low grade fever (but that is a rare side effect) and Brandon hasn't had any problems to speak of over the last year and a half. (3) the fevers could be from him possibly relapsing. #3 three is not one we even want to think about at this time. To be for sure Brandon is having a Bone Marrow Aspiration in the morning around 10am. I am so nervous!! They are drawing labs in the morning at 4am and I pray they are good. His last white blood cell count was 4.1 and that is higher than it has been since I can remember; but that doesn't necessarily mean anything bad. Please Please Please keep us ALL in your prayers tomorrow because we are all beside ourselves with worry. We know he will be fine, but you know you can't help but worry...he is our Brandon!!! I asked what the Bone Marrow needed to read because I know that before if it was 5 or less meant he was in remission. They said this late in treatment it HAD to be "0" or that means he has relapsed. Pray for "0"
On a brighter note he did finally have a really good bowel movement this morning. I sat him on the potty for quite a while and it really hurt him to go, but he finally did and he felt so much better!! He has went 4 times since then. They are continuing the Miralax for a while because they are wanting to completely clean him out and then see how he feels. They will be repeating an Abdominal X-ray tomorrow to check and see where the rest of his hard stool is now. Hopefully it is working it's way down for him to pass very soon.
I will update as soon as I can tomorrow with the results of the Bone Marrow and X-ray.
He is laying in bed now watching Scooby-Doo relaxing. My parents and Mike's mom is up here with us.
Hopefully his temp will stay down tonight.
**his appetite is still not the best, but maybe it will pick up soon since he is starting to go to the bathroom. When I was changing his clothes this afternoon he took off running and ran down then hall with nothing on but his Scooby Doo underwear. It was so cute and funny. All the nurses got a laugh out of it. We did too...we needed it.
Take care and God Bless
Tuesday, July 19, 2005 8:51 PM CDT
Just wanted everyone to know that Brandon was admitted to SLCH again last night for running a temp of 101.8
We got to the ER here at 11pm and didn't get to our room on 9 West until 5am. It was a VERY long night.
Today he has gotten an abdominal X-ray and also a Renal Ultrasound. They found that he has a large bowel blockage in front of his bladder area. This explains why Brandon has been feeling so terrible lately. Since last Monday ( the 11th) he hasn't gotten off of the couch at all. He complains constantly of his stomach and bottom hurting. He has been having bowel movements which look good, but he is still in the doctors eyes "constipated". They have doubled his dose of Lactulose (the stool softener) and are hoping they can clean him out within the next few days. They may have to use Go-Lytely (not sure on that spelling) . That is a very strong laxative. Once they get him flushed out then we will see if the pain persists or not. If it does, then they will do more testing (I am not sure now what that may involve) They are thinking the high frequent temps are from the pain of his bowels. His temp was 99.4 earlier then jumped up to 101.6 immediately when he started having such pain. He is having trouble eating because once he starts his lower abdomen starts cramping very badly and he complains of his "bottom" hurting and says he needs to rest. He has been sleeping a whole lot.
We are hoping they find out soon what is going on and they said we would not be going home until they got to the bottom of his problems because this has been going on for way too long.
We are on 9 West Room 52B.
Please keep Brandon in your prayers
Take care and God Bless
Friday, July 15, 2005 10:48 PM CDT
Brandon's appetite seemed to pick up today, although his stomach and bottom is really hurting him a lot. There really isn't much we can do for him but wait. I gave him Tylenol this afternoon when his temp went down to 99.6, that really didn't help much so I just gave him a small dose of Morphine to see if that does any better. I haven't given him Morphine in a long time becausing I am trying to get him off it completely. Hopefully it will bring him some comfort. Today is the 3rd day without a bowel movement. We are trying coffee in the morning. (hopefully it will work) I think he is scared to try and go because he won't even consider sitting on the toilet without crying about it.
Hopefully tomorrow will bring a better day.
***Our home is now up for sale...we are really wanting to sell it as soon as possible. It is ready to show if anyone knows of anyone looking for a modular home. It is 28 x 48 / 3 bedroom/ 2 bath/ all appliances included/ front and back porch included/ and siding off of the garage which matches the house included. It is a 2001 Fleetwood. I still have all of the manuals for everything in the house. If you know someone interested please have them call us at 686-6051.**
Take care and God Bless
Thursday, July 14, 2005 9:54 PM CDT
Brandon hasn't been feeling very well this past week. My days go by so quickly any more that every time I sit down to update the site, he needs me...and he comes first.
He just can't seem to knock his temp at all. He felt so "blah" last week that we decided to go to St. Louis on Sunday for a fun day to just get him out of the house. All he wanted to do was go to the hotel and sleep. He is so tired all the time.
His ANC Monday was 2950 (he has been off Chemo for almost 3 weeks so it was a little elevated). His Hemaglobin was 12.0 which was good. His appointment with Dr. Mansur his radiation doctor went very well. Though Brandon slept through the whole apointment he said we don't have to go back to him anymore unless a problem arose. He said he may be developing the "sleep syndrome" they talked about where he could sleep up to 20 hours a day. After coming home and seeing him this week I don't think he has that yet. Monday night after we got home I took his temp around 10:30 pm and it was 101.3 and since they didn't do a blood culture that day we had to take him to our local ER and have cultures drawn before I could give him any Tylenol. We didn't get home until 12:30 am.
Tuesday was rough because he didn't get off the couch all day long. His stomach hurt every time he ate or drank anything. His bottom also hurt very bad! He would have a bowel movement, but it hurt him so bad that he had this terrified looked on his face while he went. His stools aren't hard at all; in fact they are soft (I have been giving him a stool softener every day), so I am not sure why his rectum is hurting. I called the Clinic today and talked to them about it because he is not doing any better and they called him in two medications to hopefully coat his stomach and help him. He has "thrush" in his mouth from all of the antibiotics he has been on, so maybe that is what is bothering him. I just don't know.
I am not very happy with Brandon's Oncology Doctor at this moment (which I won't get into...) luckily I have put up with her for almost 2 years without letting her get to me as she is now. Please pray for me to keep my chin up :)
So today he seems to feel a "little" better. He has got off the couch today and played just a little when his Grandma & Grandpa Scott and later tonight when his Granny & PaPa came up. Although I just took his temp and it is back up to 100.8 I am getting ready to take it again and hopefully it will be down. If it gets up to 101.5 we will have to go BACK to the ER for more cultures before I can give Tylenol again.
I am so tired and feel so sorry for Brandon. This so called "virus" he has is really getting him down. He has lost 2 pounds and feels like crap. I pray he feels better tomorrow. This is the worst he has felt for such a long period of time. I will update tomorrow if things go well.
**I just read Faith's website from today and she is in the hospital at SLCH. I am not sure what is going on because I haven't got a chance to go back and read previous journal entries. Please keep her in your prayers**
Take care and God Bless
Wednesday, July 6, 2005 8:17 PM CDT
We are home again!!
Thank you to Miss Ruth for updating our site while we were gone.
We did get to come home Saturday, but Brandon was never feeling very well at all. The doctors put him on bed rest until the Parvovirus results came back. (they still are not back yet...they were out of the chemical needed to run the test) We should find out by Friday though. Anyway, he continued to run a temp of 101 and over up to 103.1, Saturday thru Monday. I was giving him Tylenol around the clock and even putting him in the tub when his temp went over 102.8. Finally by Monday afternoon we had had enough and with his temp at 103.1 we decided to head back up to Children's. **I kept calling all weekend on his temp, but the on-call doc just said to give him Tylenol so I did**
When we reached St. Louis his temp was 103.8 and he was admitted through the C.A.R.E.S. unit. We went to 8 East because of his temp and virus he couldn't go on 9 West and guess what...we didn't get to see the fireworks at all!!
He had fell asleep and I was too depressed to look out. Mike had stayed home this trip to work and we wished he were with us. My parents went up with Brandon and I.
They ran more blood cultures and also swabbed his throat to just make sure there wasn't anything going on there. All of the cultures have so far came back negative.
They are still saying he has a nasty virus and it may take 2 or 3 more weeks to get rid of it.
He went to bed last night around 10:30 pm and didn't wake up today until 12:30 pm!!! That is by far the longest he has EVER slept. He woke up and said, "I slept through breakfast!" His fever finally broke again yesterday and today it has only reached 98.8. (so far...so good)
We go back Monday to clinic for just a check-up and lab draw at 1 pm and then we go to Dr. Mansur's office (his radiation doc) at 2:15 pm for his follow-up appointment.
He has been off chemo for 2 weeks now and hopefully he can start back on Monday. His ANC today is 1100. His Bone Marrow still isn't producing red blood cells, so hopefully his Hemaglobin will be high and he won't require another blood transfusion.
I am soooooo tired!!!!!
Brandon is still on bed rest until we go back and we are just going to take it easy for a while. I am exhausted from the trips. *I know he is too*
Sorry for the delay in updating, but 8 East doesn't have a computer I can use.
Take care and God Bless
Tuesday, July 5, 2005 9:19 AM CDT
This is Miss Ruth from Brandon's church.
Kim is not at a computer so I am updating for her.
Brandon got to go home Saturday but his temp would not stay down so on Monday they went back to the hospital. His temp was 103.8, he was sick, wouldn't eat. They still do not have test results. Kim hopes to get them today and will try to up-date tonight.
He is in 8-E, Room 54-B.
Friday, July 1, 2005 10:02 PM CDT
So far no temp today!!
He had his Head MRI this morning at 11:00am and it lasted around an hour and a half. They said it looked fine. His Hemaglobin today was 10.6 and they are expecting it to keep going down because he is not producing any red blood cells in his bone marrow. Yesterday the count was 0.6 and today it is 0.15
We are hoping to go home Monday or Tuesday. Luckily if we have to stay we are facing the Arch so we will be able to see the fireworks Monday night.
We are still on 7 East and probably won't transfer up to 9 West because of his Virus. It can be very dangerous to Sickle Cell patients.
He slept all day again today and finally woke up around 4pm. We just finished watching Toy Story 2 so I decided to run up here and update the site. They won't let me use the computer on 7 East. (I love that floor) ha ha
Oh well...there is no place like our "home away from home" 9 West!!
He received GCSF this evening to help bump up his white blood cell count. His ANC today is only 480 and is still dropping. This will help some of his counts recover quicker..all except for his Hemaglobin.
I will update tomorrow.
Take care and God Bless
Thursday, June 30, 2005 8:55 PM CDT
Brandon has had a "little" better day today it seems. His temp is finally going down. It only got up to 100.2 today. Right now it