Steadman Family

We got a call last night saying that we've been given a new family member since Ben loves puppies so much. It's cute watching her and Saddie (our German Shepard) play despite their 65 lbs. size difference. She's working out wonderfully. Thank you, Jeanne.

Our trip to Kansas was great.

Many thanks to Abby and Joe for being gracious hosts and allowing us to invade their home. We love you both and hope that we can repay the favor.

We really enjoyed spending Sunday with everyone that came over. It's been far too long since we've seen you and I cannot express our thanks enough for your love.

Some major highlights to share:

"The Great Silly String Fight of 2005" - Lori and Kyle brought cans of silly string for all of the kids and let them lose in the backyard (I still think doing it Abby's bedroom would have been more fun). I've never heard so many girls complain about their hair, but now have a deeper appreciation for Kyle's patience.

A quite night out - Abby watched the kids while Melinda and I enjoyed a Sunday evening in the Topeka nightlife. It was much more relaxing than either of us could have imagined and allowed us to discuss our meeting with Dr. Banerji.

Boss Hogs BBQ - Dot and Rich made sure that our trip to Kansas was complete with a traditional meal. Thank you both for coming down to Topeka and for making lunch so easy and delicious.

Zoe, Cecelia and Sophia - I highly recommend that all cancer patients spend a weekend with these beautiful girls. The three of you did an amazing job in picking up all of our spirits. Ben still hasn't stopped smiling when we talk about how much fun we had with you or laughing at references to Zoe's big butt costume.

We were worried that the trip out would tax Ben's energy, but it has done just the opposite. He's got more interest in what's going on, has more confidence in his strength and has had a much needed break from our routine of appointments.

Again, thank you all for your love and support.

    The meeting with Dr.Banerji went really well. He was very happy to meet with us and seemed to really believe that his homeopathic remedy would help Ben. He was able to explain how he came to discover this remedy and gave some examples of how he’s cured brain tumors with it. His knowledge of the western medicine treatments and their effects lent him quite a bit of credibility in our eyes. The remedy that he suggests can be bought almost anywhere that homeopathies are sold, and he wanted no money for the time he spent with us. He’s definitely not in this for money. He’s in the US right now meeting with five major research hospitals that are interested in his remedies for breast and lung cancers. He is also trying to set up animal studies for the remedy he has for brain tumors.

     When he looked at Ben, he could tell right away that we had Ben on steroids. He gave us another remedy to help with the swelling of Ben’s brain, and insisted that we get Ben off the steroids. We were/are already in the process of doing just that, with Ben down to .5 mgs a day until next Tuesday, and then off completely.

     I don’t know if these remedies will cure Ben, but I feel certain that I was led to Dr. Banerji for a reason. Hopefully it’s because its time for there to finally be a cure for this devastating condition. All of us (most especially Ben) would love nothing more!

     On a final note, Dr. Banerji is also working on a drug that may help anyone not responding to the first remedy. I tried to question him a little bit more, but he didn’t want to talk about Ben not responding to the first one. “Always keep positive thoughts, no negative ones” he said. He did assure me that we are always welcome to contact him with any questions we may have, and to keep him posted on Ben’s progress. Boy is he going to get sick of me! 

 

Love and peace to you all

Melinda

We're havnig a few issues with blog.com today. I'll post more about our trip once I have the technical issues resolved.

Why do I feel like I'm back at work?

Update
Your comments have not been deleted, they just aren't "recent" enough to be included in the main page and I'm working on restoring the pictures of us all. The joys of dealing with a small, rapid software company. Thanks for your patience today.

We've had several requests for details on our trip to Topeka and I apologize for not having a solid plan days before our expected departure. We're still not exactly sure of all of the details at this time. We've got a call Thursday evening with Dr. Banerji from India to schedule a time for our meeting with him in Kansas City. We're hoping to meet with him on Sunday or Monday. Here's our schedule should that work with him:


This all could change depending on Dr. Banerji's schedule and we'll have more details Thursday evening or Friday morning. Thanks and look forward to seeing everyone out there. 

I apologize for the lack of updates over the last week as we've been super busy. We had so many doctors appointments last week and have been pretty worn out. We've suddenly found ourselves with some time on our hands now that Ben has had his last radiation treatment. It's a little hard changing gears now that it's over. We did manage to take a quick break and take the kids to the circus over the weekend. We had a great time and got some new pictures.

Madie got her face painted and was dressed up as a clown.


Ben wanted his picture riding one of their tigers. You can see the amount of swelling in his face from the decadron and the effort to smile. We have noticed an improvement in his facial expressions over the last week or so and are hoping that he recovers more muscle control.


We celebrated Ben's last radiation treatment with a trip to Casa Bonita Tuesday evening. We had nearly thirty people in attendance and kids running every direction. Thanks to everyone that came (and withstood the food). 

We just finished our Tuesday/Wednesday/Thursday combo. Several cool things afoot.

I had a quick meeting with Dr. Chen at University after Ben's radiation treatment on Tuesday. He's really pleased with Ben's strength after the radiation and believes that Ben will get stronger as he ends the decadron. He also confirmed that our last treatment will be on Oct. 18th. I was as giddy as a schoolgirl to be able to count the remaining days on one hand.

Ben had a good appointment with Dr. Foreman on Wednesday and is dropping down to 4 mg of decadron per day and will drop down to 2 mg daily starting on Monday. He stressed again that Ben will begin having a little more energy and be in a much better mood once he's off the steroid. We've already seen a few improvements and had Ben giggling at the idea of going out to a pancake breakfast on his way to the doctors. I can't remember the last time he giggled before that, but guarantee that I will never forget that one.

We took advantage of a two hour break between appointments to visit the aquarium. It might have been a bit too much activity for Ben, but Madie had a great time. She loves getting to pet the horse-shoe crabs and manta rays and didn't seem to mind our whirl-wind tour too much.

We spent Wednesday night at my mom's since Melinda and I had 8 AM appointments the next day with our psychiatrist. Melinda took advantage of a neighbors offer of a massage and took a bath in Mom's oversized tub. I took advantage of a hockey game in hi-def while Ben and Madie took advantage of the snacks available at Grandma's house. Where else can you get served cheese and crackers in bed while watching cartoons?

Ben did great during his appointment with the art psychotherapist at Children's today. I had a few questions on this, so here's the skinny: kids don't respond well to adult psychological discussions or treatments. Picture Freud asking a six year what a cigar means to them. Children psychologists use play and art to determine how kids are feeling as it's a normal part of their communication.

Ben's usually very shy when meeting new people and has been very unengaged for the last few weeks thanks to decadron doing wonders to his social skills. We saw none of that today. He insisted on spending time alone with the therapist before letting Madie join in. She said he opened right up and laughed while playing ball with her and learning how to make a toy figure dance. He drew a great picture of what makes him happy - eating grapes, watermelon and broccoli. I'd say it was the decadron munchies kicking in, but those are honestly his favorite foods (alas, my efforts to get him hooked on M&M's have been wasted). He also had a good time showing Madie how to make the figure dance and didn't complain about the therapist making him walk in the hospital.

Today showed us how important it is for Ben to feel like he can do things without our help. A little self-reliance seems to be the best medicine for him right now.

Thank you to everyone who's been helping out with meals and donations. I cannot express how much your support and love means to us. 

We now have a squirt gun (or four), a disco ball and we picked up a new stroller last week. Thanks everyone for shopping around on those. 

We ended last week on a good note from Dr. Foreman and company at Children's Hospital - Ben is still very stable and we are cutting the decadron steroid down to 6 mg per day. Our doctors are being very cautious on decreasing the steroid as we're approaching the point where swelling from the radiation can be a problem. We're hoping to see a slight reprieve from the negative side-effects of the decadron - namely the mood swings and temper tantrums. Hopefully we can find a balance where we get all the good anti-swelling without any kicking and screaming steroid rage moments. Or at least that's how it works in my ice-cream induced fantasy.

We're starting to put together our plans for a quick trip out to Kansas City to meet with Dr. Banerji, the homeopathic doctor from India. We're not exactly sure what his schedule looks like at this time, but we're planning on spending a day or two in Topeka along the way. We've had several offers from folks out there offering us a place to stay and I'll be making some calls this week as we finalize our schedule. Can't wait to see you all once we get into town.

We spent so much time trying to get Ben to make a wish last week that Madie decided to jump into the game with her three wishes:

1. A disco ball in her room. Just what every four year old needs.  
2. A garden. I spent most of the day Saturday tearing out grass from around the tree out front and building a rock wall. We just need to plant some tulip bulbs and wait for spring to complete the project.
3. To ride a horse. I'm leaving this wish in Melindas capable hands as I am a documented coward when it comes to large animals.

We're into week five of Ben's treatment and here's a preview of things to come:

• Complete schedule for the Kansas City trip
• Results of Ben's appointment with an art psychotherapist
• Updates on the quest for Madie's disco ball
• Ben's wish revealed?

Stay tuned for more.

a squirt gun.

The simple pleasures of youth. He obviously doesn't understand the scale of the wish that he gets to make and we're trying to explain that he needs to think grand thoughts.

And we're hitting Toys-R-Us today to get a new squirt gun.