History

Journal History

Sunday, March 14, 2004 4:34 PM CST

Brandon attended a St. Baldrick's event on Friday. People raise funds and ultimately shave their heads for money for childhood cancer research. Brandon was excited about going, but was a bit overwhelmed by the smoky room. We ended up leaving a little earlier than expected.

Brandon is going to try baseball for the first time ever on Monday. I'm not sure if it is going to work out, but we will give it a try! He is excited about trying and was practicing hitting and bunting this weekend.

Wednesday, March 3, 2004 5:23 PM CST

Wow! Again it has been a long time between updates.

Things have been really good. Last summer came and went too fast! Summer is the hardest season for us, as Brandon doesn't sweat - he just overheats. That's due to all the damage his skin received from the radiation and Graft Versus Host Disease.

Fall is when the fun began. We discovered Sesame Place and absolutely loved it! Of course, then there was Brandon's birthday and Halloween. Both were lots of fun. Brandon enjoyed appearing as a decoration and scaring the kids as they came to the door. It was fun, lots of the kids hung out and waited for the next person to be scared. Then we were off to on a business trip to California. Brandon and I both caught an awful cold on the long plane ride there. The first few days we just spent miserable in our room. Towards the end of the week, we were able to visit the Sand Diego Zoo and Legoland. Brandon loved both of these. The trip home was much shorter, and much more fun. There was a lunar eclipse while we were flying and the airline brought Brandon ICE CREAM as a special treat!!! Wow! How nice! He loved it! United Airlines is now our airline of choice!

Thanksgiving we decided to really celebrate Brandon making it 5 years cancer free! We took a trip to New York during Thanksgiving! Thanksgiving is a holiday of mixed emotions. We have always enjoyed watching the parade. However, right before Thanksgiving after his transplant, Brandon had a toxic drug reaction. It was horrible. For days, Brandon was so confused he didn't even realize who I was. To be honest, he didn't know who he was. The interesting thing was that he still remembered he loved me. He would give me the sweetest smiles. So, I will never forget the Thanksgiving that Brandon didn't know who I was, but the memory is a lot foggier now.

Anyway, New York was amazing! We loved seeing it! I tried desperately to find a place we could view the parade. Every which way I turned, I was told no. It hurt more than it should, just because I knew all he went through to survive the 5 years to do this celebration trip. I started looking in the summer, so by October, I just gave up and realized Brandon's dream to see the parade just couldn't happen. Just a couple days before we left for New York (we decided to go anyway), someone called and thought they knew someone who knew someone who worked at NBC that could get us tickets!!! YIPPPEEE! We never imagined we could get tickets!! If you remember the weather was perfect for a parade! There we were sitting in the grandstands! We were so close we could almost touch the floast! Oh it was amazing! It was everything Brandon dreamed of - AND MORE! Thanks again to all the wonderful people, and especially NBC, for making this dream a reality.

By December, we were just happy to be home. Christmas was wonderful, as we were all healthy and happy.

Healthwise, Brandon is doing well. His cataracts have not grown, so we keep going back. He is also still cavity free! His roots are small, so we have to keep careful watch on him. That is a frequent side-effects our kids get. I am blessed that his permanent teeth came in, so I guess I will have to live with short roots.

Brandon is also growing. He is on the growth scale now, and in the 25% percentile for height. He still has osteoporosis, and despite treatments, his bones have not improved over the past year. His hair is still sketchy and gray. His skin is still extremely dry and scaly. Reading and spelling are still a challenge. His feet are much better and he can walk for long periods of time now. His heart isn't much better, though we are scheduling a second opinion.

Brandon also has a new friend now that we see at least once a week. Brandon is also being honored at an area fundraiser for Childhood cancer called St. Baldricks. For more information, go to this website http://www.stbaldricks.org/location_detail.asp?citycode=44669
For those of you that live near us, we would love to meet you there!

Friday, May 2, 2003 11:33 AM CDT

Today was Brandon's eye appointment. I was sitting in the office, wondering if now he would need glasses and counting my blessings that GVHD hadn't damaged his eyes. Then, the doctor said it looks like he is getting a cataract. It never ends.

Wednesday, April 23, 2003 5:59 PM CDT

Happy Easter!

Last year, Brandon spent Easter in the hospital as he was battling a cold. This year, he was healthy and home, sweet, home!

We had a little trouble hunting down an Easter Egg hunt. We went to the one in Herndon, but missed the hunt. Then, we went to another Easter Egg hunt, but they limited the kids to picking up 5 eggs. Brandon didn't see the point, and I have to agree that there didn't seem to be much fun in waiting in line to go out to a field to pick up 5 eggs.

Brandon got a great picture with the Easter Bunny. I will try to scan it and post it. I am so lucky to have such a precious little boy.

A little bad news. Brandon has a blood clot in his heart. It was at the end of his broviac that they had to give him chemo. When they removed the line, instead of coming out with the line, it lodged into his heart. Too late now to give medicines to break it up the doctors say. If it dislodges (and they don't think it will), it will go to his lungs. The doctor says he will need immediate medical care in that case, but that it isn't life-threatening. I believed that up until I read that David Bloom recently died of an embolism to his lungs. I think I am going to need to get a second opinion.

The bad news is that the clot is getting bigger. I have prayed that the clot would go away, but it hasn't happened. The only way to get rid of it is heart surgery, which the doctor is not recommending at this point.

Friday, April 4, 2003 8:32 PM CST

Brandon is busy getting ready for Easter. Easter comes with mixed feelings for me. I have memories of Easter '97. On the days before, I noticed a black spot in his mouth, kind of like a blood blister. I assumed he must have bitten it and I was so relieved on Saturday when his mouth looked fine. Then there was Easter Sunday! I don't remember it to well, but the next day, we headed down to the White House for the Easter Egg Roll. It was a bit cold and windy. Brandon was tired and I carried him most of the way. He had a great time. His favorite was a "5 a day" CD given out by Dole fruits. Anyway, life seemed wonderful!

The next day, I noticed he had another black spot in his mouth. Now, he might bite his mouth once by accident, but not twice. The next morning I made an appointment to see the doctor. The doctor took one look at him and ordered a blood test. I remember Brandon full of energy climbing over me and the chairs and the nurses getting extremely worried. Now I know it was because his platelets were so low. The doctor told me I had to take him to the oncologist right away. He mentioned that he wasn't going to call an ambulance to take him to the hospital. The fact he considered it, let me know that it was serious. He told me Brandon either had Aplastic Anemia or Leukemia. Honestly, I didn't know much about either, but anemia sounded better (I know better now).

I drove straight to the oncologist. They took his blood and made arrangements for the hospital. I remember talking to the doctor and her saying "Brandon" and "chemotherapy" in the same sentence. That's the moment it hit me. NO!!! My child receiving chemo??? That happens to other people, right? I had only know one other person to have cancer and that was a coworker. How could our lives change so immediately? How could this possibly be happening to us?

I remember Brandon crying when they put the IV in his arm. I remember going to the hospital and seeing this sick, sick child pushing an IV pump in the waiting room at the hospital. Oh how my heart went out to me. Little did I know that Brandon would be that child one day. I would later learn his name was Eric and that he was recovering from a bone marrow transplant.

I remember that first night in the hospital. April 2, 1997. A cruel, belated April Fool's day. Brandon didn't want to stay. I wanted to grab him and take him someplace safe. I remember he was originally happy to be there with the crazy bed, the TV up high and the "feast" they brought him to eat (he hadn't eaten lunch and it was after 8:00PM by then - we scrounged for food in the kitchen). Then, they decided they needed more blood. The doctor had sent us over with a vial they had already drawn and had said it would be enough. I mentioned that we had brought that and they told us that it wasn't enough. I didn't know enough then to say no or call the doctor. I just went for it. Poor Brandon! It was awful. The blood draw did not go well. His life had instantly changed from playing outside at the Easter Egg roll to enduring painful sticks for blood. From sleeping in his bed safe at home, to a hospital room, attached to a pole with fluids, plasma, blood, etc running into him. The sights and sounds were all new and so scary. It was no place for a child. My heart was aching.

I didn't sleep at all that night. I just cried. I was desperate for information. What was Leukemia? What was going to happen? What could I do? I called a friend of mine that I had not spoken with in years and asked them what Leukemia was. My friend looked it up and it gave me some hope. What had happened to my little family? I was a single Mom and though times had been tough, I never felt like it was more than I could bear. Now, I just didn't think I could do it. It was too hard. I couldn't bear to think of Brandon going through all this. Why couldn't it be me? I would have gladly gone through the worst, if only he would not have to go this path. Oh, how I prayed.

It all happened years ago, yet it seems like yesterday. I wish I hadn't had to go this path. I wish I was naive enough to think that children grow up and children don't have to go through these awful, awful treatments.

Enough for tonight. I am so blessed to have my child! If you have a child, please give them an extra hug and kiss. I have learned our children love US more than we realize.

Tuesday, August 06, 2002 at 12:57 PM (CDT)

Certainly had our ups and downs. For the ups, Brandon received his first trophy EVER! He received it for playing in basketball. He was so proud of it. He didn't take it out of his hands until we were safe at home, because he was worried something would happen to it. He is so proud!

Another up is that Brandon got a kitten! He loves the kitten and named her "Meemo" His invented his own name! She sure seems to love him. We couldn't have gotten a better kitten. She is precious. Our other cat, Stripes, is not as in love with her as the rest of the family, but he is warming up to her (slowly).

A worry that we have is that we found a lump on Brandon's leg. It is above his knee, on the inside. I took him to the pediatrician (I didn't have the courage to go to the ped-onc). The pediatrician thinks it is probably just a cyst. We are going to follow up with the oncologist this week. We are optimistic that it is just a cyst.

Thursday, July 18, 2002 at 01:46 PM (CDT)

Wow! Can't believe so much time has passed since I update Brandon's page. So much has happened.

Let's talk about what is happening now. Brandon is on his first ever basketball team!!! The Reston Magic! He tries so very hard and plays well. Due to how the GVHD has damaged his skin, he doesn't sweat normally and gets overheated very quickly. Of course, he wouldn't let that stop him, so we have to be careful to stop him before it happens.

He is also learning to swim. Last Friday, he was floating all by himself in the pool! It was great to see! His instructor was the best! She really put herself into teaching the kids to swim.

Brandon is learning all of his US States. Homeschool is still working out well for us. Someday, though, we hope his immune system comes back enough for him to be with lots of other kids.

Wednesday February 20, 2002 11:45 AM CST

Brandon's dentist appointment went well - no cavities!! He may need some orthodontic work though to help his teeth com in. Also, he needs to have a teeth cleaning, but we have to wait until the cardiologist, oncologist, and dentist agree on the best antibiotic to use. Brandon needs antibiotics before the cleaning, due to his suppressed immune system. Nothing is simple!

Brandon had a really awesome Valentine's Day! I think, mostly, because his expectations were low. He was so happy, he almost cried!

The orthodics for his shoes really seem to be helping. The only problem is his feet still get too hot and you can't use orthodics with sandals.

Wednesday, January 09, 2002 at 06:47 AM (CST)

Brandon has had a couple colds recently. Christmas he looked so miserable. I looked at him and said something about him being sick. In an instant he pop and exclaimed, "I am sick!?!! I knew I had a cold, but I didn't know I was sick!?!!". I never realized until then, that I had used "sick" to mean he had leukemia. Of course, I quickly tried to explain that sick meant "not well", and that he didn't have leukemia. He didn't seem convinced.

Last night, I said I felt like I was getting sick (cold) and again, the big eyes and exclamation, "you're sick!?!?!". Simple enough, but still one of those painful reminders. You just never know when they will pop-up.

Brandon is doing well. He is taking basketball lessons on Saturdays and gymnastics on Wednesdays. I am sure they are the source of his colds, but it is good to see him playing with other children. Most of the children have been kind, but some tease him about not having so much hair. I am so proud of the way he listens to his teachers and tries his very best. After going through so much, he doesn't have as much as ability as the other children, but he is trying and I know in time he will catch up.

I am little concerned about his teeth. They were coming in great, but then they seem to have stopped. He still doesn't have his front teeth. So, it looks like it is off to the dentist for us.

Tuesday, October 09, 2001 at 11:26 AM (CDT)

Good news! As most of you know, Brandon's feet have been causing him lots of trouble post-transplant. Many doctors have looked at them with various reasons as to the cause. We went to a podatrist and he thinks Brandon will improve with orthodics. We go back this Friday for a fitting. Interesting thing was that his podatrist feels the foot problem is unrelated to his transplant. He feels Brandon's feet would have been a problem no matter what!

We go back on Friday, so I will let you know more then. We have been a bit concerned lately as Brandon has had a few nosebleeds. I keep reminding myself, that the air is dryer.

Wednesday, May 30, 2001 at 03:23 PM (CDT)

Some days, I get "flashbacks" to how life is and how life was.

I had to get my car inspected today. 2 years ago I was getting my car inspected and Brandon was with me, but he slept the whole time. The GVHD was making him so very, very tired. He was so sick. 2 years before that, was when Brandon was first diagnosed. Brandon was in the hospital and I was so, so worried I was going to lose him. Some man cut in front of me in the inspection line, and I got so angry. He was robbing me of time with Brandon!

On the way home, today, I passed a park that Brandon and I used to visit when he was a baby. Things were so carefree then. I didn't even REALLY know kids got cancer. Maybe I knew, but not really.

I can't believe all the heartache we have endured. Sometimes it seems like more than any human should have to endure, yet, I know there are so many others that have endured so much more.

I am just starting to accept the fact that, Brandon has side-effects from all that he has been through. I always kind of thought of them as passing, but I am beginning to accept, that some things got broken, not dented, along the way.

Last week, Brandon and I went to the Build-a-Bear workshop. We had a great time. As we were leaving, Brandon spotted a toy store and was overjoyed - but not for the reason you imagine. You see, they had chairs there. His feet hurt so much after being on them for an hour. Not a little, but a lot. It breaks my heart to see him just collapse into the chair and exclaiming what a relief it is. It is something you would imagine an 80 year old doing - not an eight year old!

I know in my heart, in the bigger scheme, it is a little thing, but still our kids go through so, so much, they deserve to live the rest of their lives problem-free, yet, instead, they have more and more issues.

Wednesday, May 30, 2001 at 03:23 PM (CDT)

Monday, May 28, 2001 at 08:26 PM (CDT)

Wow! It has been so long since I have updated! So much has happened.

Currently, we are worried about Brandon's LDH level. It is very high. All his other counts are okay, so we are in a "wait and see" mode.

We go back to the doctor on June 1, so I'll have more information then. I have put up some photos. One recent and one prior to his relapse.

Brandon overheard on the TV about someone having leukemia. He stopped in his tracks and said, "I'm sorry he will have to go through all the things that I did". I guess that is one of the gifts. He has become so compassionate.

Friday, January 19, 2001 at 04:16 PM (CST)

Most of the results are in! Brandon's immune system is back! Goodbye, mask! Goodbye, Vantin! Goodbye, Bactrim! Goodbye, Diflucan! (okay, so hello, amoxicillin) After almost 4 years of a compromised immune system, HELLO WORLD!!!

The bone marrow and spinal fluid are clear! The only thing we don't know is the percentage of donor marrow. We should know that next week. All his bone marrow tests since transplant have been 100% donor, but if it is not, we are going to be crashing back to earth in a BIG way.

Also, Brandon's iron was very high after his transplant, so we have diligently tried to avoid iron. Well, that's normal too!

I am at work and called Brandon at home. He
broke into tears, he was so happy! Can this all be true?? Is the worst behind us? I am scared to hope...

I have to say, the day started off - tough. Brandon had to have an EEG, which normally is not a big deal. However, when the tech was hooking him up, she rubbed his head so hard, that it hurt Brandon - bad. Because of all the GVHD, his skin is more sensitive to lotions. I could see the red marks. I saw my brave little boy, ball up his fist and just try to take it. He told her it hurt, and she tried to downplay it. Big mistake! I have seen Brandon take so much pain without a word, that I know if he says something, it is very painful. It bothered him more that she didn't believe him about his pain. I told him that I knew it hurt. She finally acknowledge that she was hurting him, but that she was sorry. She didn't want them to fall off and have to do it twice - neither did we. He is so brave, but I remember when he was first diagnosed and the nurse commented how brave he was, he said "I don't want to be brave." I knew how he felt. I wanted to go to pieces too, but it wasn't an option...

Anyway, I think we will go to Toys-R-Us tonight and get a new Lego set! Next, we will start saving for a trip to Disney World. Oh, my gosh, that is hard to type! Can we really be planning a trip?!

Tuesday, January 16, 2001 at 04:43 PM (CST)

Thursday, January 11 we went to the Ronald McDonald House in Baltimore. It was a hard drive for me, as so many memories came rushing back every mile we drove. Brandon was looking forward to getting there. He couldn't wait to get to the RMH! As soon as we were in the door, he went straight to the play room. He was so excited to see all the new toys!

It was definitely a different experience for me. I could still see Sarah's smiling face at the piano. I think she was 12 years old. She used to practice the piano to help her hands recover from the side-effects of chemo. She was a relapsed breast cancer patient. She came to Hopkins in hopes of find a cure, that wasn't available in her own country. Right before she was due to go home, she found out she had relapsed again. This time there was no hope.

I also remember seeing one of the Mom's walking up the three flights of stairs to her room after spending a long day with her son. They had such a hard road. The doctors tried everything to get her son into remission, without success. The son developed a fungal infection in his lungs. If the doctors treated his cancer, the thought was that the fungal infection would kill him. If the doctors treated the fungal infection and not the cancer, then the cancer would grow and spread. Somehow they got through that. However, despite trying every experimental treatment that anyone could think of, they never got his cancer under control.

On Friday, January 12 we went to Hopkins for Brandon's test. Brandon looks forward to getting his "relax medicine" for the bone marrow aspirate and spinal. Unfortunately, the doctors couldn't get the IV started, so they had to use a mask. Brandon was so sad that he had looked forward to this for a long time and that it didn't work out.

We did see a few friends at the clinic. It was good to see other children that had made it through. We know so many that didn't.

We are now waiting the results of all the tests. Dr. Chen says that if these tests come back okay, that we now stop looking for relapse. Can it be true? Can this long horrible road really be over? It is hard to imagine, and scary to believe. We had thought it was over before, only to have our world crash in when we discovered he had relapsed.

That night at the RMH, Brandon had a terrifying dream. He dreamed that he was looking from a hiding spot above at all the rooms with people in beds (sounds like a hospital to me). This monster went from room to room. Brandon discovered that if he shut his eyes and kept them close, then the person would be okay. If he looked before "it was over" then the person would be turned into a monster.

He was terrified when he woke up. He wouldn't look anyone in the eyes for a couple hours. We did go to the aquarium and had a great time, but Brandon was anxious to go home.

That night Brandon needed his hand held as he sleep. When he woke up in the morning, he commented that it was good to be home. Brandon needs to leave the lights on now when he sleeps (something he has never needed before). Last night, I went in and turned them off when he was asleep. He woke up scream for me to "get him all the way awake". I did and then he went back to sleep. He didn't remember his dream when he woke up.

It is heartbreaking to think what terrible memories he must have stored away...

Thursday, January 04, 2001 at 01:43 PM (CST)

Happy New Year to everyone!

Brandon had a wonderful Christmas! We didn't have heat (it decided to stop working), but we had lots of presents! Brandon says it was a perfect Christmas!

This week, Brandon is struggling to get back into "school-mode". I think he is motivated again, but not before losing the Nintendo for a week!

Next week we are headed to Johns Hopkins for a follow-up visit. He will get his eyes checked, an EKG and echocardiogram, and he will have a bone marrow test. We are hopeful that the Graft Versus Host team at Hopkins will be able to figure out why Brandon cannot wear shoes for more than one hour without them feeling like they are burning.

Wednesday, December 27, 2000 at 02:07 PM (CST)

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

----End of History----