Steadman Family

Well, I guess that’s all for now. We’ll let you know if the great name debate gets resolved any time soon.

Take care everyone

Melinda

As many of you know, Ben’s birthday will be coming up on August 11th. People have been inquiring as to what our plans are for this obviously difficult day. We have decided to have a toy drive in his memory. He loved getting them, as all kids do, and I’m not ready to stop that just because he’s no longer here. We’re not sure who to donate them to yet, possibly the new children’s hospital opening this fall, or we may store them until Christmas time for families unable to buy their own. Anyway, for anyone wishing to donate, please make it an age appropriate toy (he would have been 7yrs old), and it can be anything that you would have liked to have gotten him before. You can either drop them off at our house directly, or send them to us in the mail. I understand that this may be too painful for some people, so please don’t feel obligated to do anything. We would also feel honored to have donations made in his memory to any charity supporting cancer research and patients (such as The American Cancer Society or Livestrong). The only other thing that I ask is that you think of him that day and send a prayer up to him letting him know how much he is loved and missed.

Melinda

   Sorry about the absence of updates. It’s difficult to explain why, although, Dean did a good job in his latest post. This journey is such a personal one. Yet, I so miss reading all of the comments, they really do make me feel better.

   Madie is doing really well. She is very excited for kindergarten this fall and asks me on a weekly basis how much longer this “school break” is going to last. She also speaks of Ben often and misses him more than she will admit.

   I am doing ok. Every day is a struggle to get through without Ben. Having Madie helps me cope and baby pineapple is now constantly making her presence felt as well. As wonderful as they both are, there is still a giant hole in my life and in my heart where Ben is supposed to be. This loss has sent me on a lifetime journey of spiritual questioning and discovery. I don’t know where I’ll end up; I only hope that it involves the belief that I will see my son again someday.

   I hope everyone had a good 4^th of July holiday yesterday. Madie has been feeling somewhat under the weather, so we kept things low key and had some of our neighbors over for food and fireworks. All the kids had a blast, and the street in now littered with blackened debris.

   Well, that’s it for now. Please check back soon for future updates on the “Secret Garden” and the Frederick/Firestone “Relay for Life” event coming this August.

Melinda

As spring continues toward summer, I am reminded that life must go on. Every tree and bush, every blade of grass knows the cycle of life and its seasons. I am slowly being pulled forward, kicking and screaming, into a new life and a new season, one without Ben. I don’t go willingly, for I want only to go backwards, back to a time when Ben was here. I long to hold him in my arms and breathe him in, to caress his beautiful face and cover it with kisses. The outside world would just disappear and there would once more be the four of us, together again, a whole family.

There is nothing as painful in life as watching you child die before your eyes. As parents, we dedicate our lives to protecting our children from this. Ben went peacefully, in our arms, surrounded by our love. While I know that this is something that many children don’t receive at the time of their passing, the memory of it brings me great pain, as I was helpless to protect him.

They say that time heals all wounds, but so far, time has only allowed the agony of his loss to sink in deeper. Time may dull my pain, but it will never heal it completely. Not until the day that I can be with Ben again.

I love you son, and miss you terribly.

Melinda

We decided to have a Very Merry Un-Birthday Party for Ben and his classmates last Friday at a local Chuck E. Cheese. What a blast! Approx. 20 kids showed up (incluing some of Madie’s friends) to party down with pizza, pop, and games galore. I must say that Chuck E. Cheese knows how to throw a party, and were a great help with managing everything. All the kids brought presents that they all got to exchange (since it was technically everyone’s unbirthday). A big thank you goes out to all of the parents for coming on such short notice. You helped make it a night we will never forget (along with the fact that channel 4 news filmed almost everything).

We would like to ask any of the parents who were able to take pictures, to please e-mail or send us copies, as we have very few and would like as many as we can get.

Anyone looking for an excuse to have a party, I highly recommend having an Un-Birthday Party!!

It’s been longer than intended for this post, but we’ve been scrambling around, trying to get our feet back underneath us. Our 2nd meeting with Dr. Foreman on Tuesday was even more dismal than the first. He had a conversation with Dr. Gore (she’s in charge of the clinical trial we were considering) and they both agreed that Ben was not a good candidate for the trial. Dr. Foreman does not feel that Ben will be able to meet the minimum life expectancy for the trial. He instead strongly encouraged us to begin hospice care, and to live life as full as possible with Ben in his remaining weeks. This was a difficult and devastating conversation for all of us, even Dr. Foreman.

We are thankful for all of the tremendous support and prayers from everyone. It’s the only thing that helps us through each day. We’ll post things that you can do to help as we get more organized this next week.

Each passing day has continued to get better and better. Ben has officially been off steroids since Saturday, and boy is he feeling good! Both Ben and Madie went to school on Friday (Ben went for the last hour of class) and had a great time. Everyone at the school has been so amazing and supportive! We hope to get Madie back on track 3 days a week, and Ben will attend based on his energy levels. Speaking of which, he has had wonderful energy and many of his symptoms have improved from before he was even diagnosed! We are soooo happy to see the real Benjamin back; I just can’t wait for some of that steroid puffiness to go down. There are still some muscle weaknesses associated with the steroids that will take a little more time to over come. Ben is very determined though, and often insists on doing things by him self.

   We saw Dr. Foreman today after a 3wk break, and he seemed very pleased with Ben’s condition. He indicated that if there were going to be a problem with necrosis, we would probably have seen an indication of that by now. Since Ben appears to be so stable, we just sit tight until his next MRI in 3 more weeks. If all looks stable on the MRI, then we will be free to discuss the possibility of further treatment through any clinical trials that may exist.

   It looks like the kids will be going horseback riding this Saturday, and Madie couldn’t be more excited. I just wonder if she will actually get on the horse, or chicken out at the last minute. The same goes for Ben, although he seems to have gained a little more willingness to try new things.

   The “High Five for Ben” fundraiser stars next week, and I am truly touched by it. We hope to attend as much of it as we can. Friday night’s spaghetti dinner sounds as though it may be especially important. A local band of law enforcement officers is playing, and have plans on writing a song for Ben!!! This will be a truly wonderful gift. They also plan on making Ben an honorary officer, complete with badge. Ben will be thrilled, even after I explain to him that he can’t throw his sister in jail.

   Nothing new to report on the Make-A-Wish trip, we’re still waiting to hear back from them regarding the actual travel arrangements.

   I guess that’s all for now. Please continue to leave comments, the kids (us too) get really excited to read them. They help us keep our chins up!

Love and peace to you all

Melinda

   It’s only been a week since our last post, but it seems like so much longer. Ben has really begun to feel sooooo much better since going down to .5mg of Decadron a day. He’s regaining his strength a little bit more every day, and that “I’m a mischievious 6yr old boy” light has started shinning in his eyes again. He will be completely off the steriod by the end of the week, and hopefully, he will remain off until his post radiation MRI, due in 4 more weeks.

  Ben and Madie got to spend Saturday night at my brother’s house with his 3 girls, and what a great time they all had. I’m told they stayed up late eating popcorn and watching Halloween shows in preperation for Halloween night, what fun! Halloween night was also spent with Rob’s girls, and the trick-or-treating was even better than last year.

  Peaches continues to bring joy and laughter to our lives, she has truly become her own brand of medicine for us.

  Finally, never underestimate the power  and allure of Halloween candy booty. It had Ben dragging a dinning room chair across the room, climbing up onto the chair, and then onto the kitchen counter in order to reach the candy sitting on top of the fridge. He’s definatly back to being a 6yr old. It also helped me convince Ben to get back on the scooter after falling on the first try ( he hasn’t ridden a scooter since about a week before he was diagnosed, too much coordination and balance loss by then). I’m happy to say that he rode the scooter without a hitch on the 2nd attempt! Yeah!!

  We’re still working on the “Make a Wish” thing. I’m hopeful that since he’s feeling better, he’ll get more interested in talking about it. We will possibly be going horseback riding on Friday, which will be very exciting for Madie no doubt. I’ll let you know if we actually manage to get them on the horse(s).

  Love and peace

  Melinda

    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

Week four of radiation has begun with a bit of a hitch, mainly in deciding whether to continue radiation treatments or not.  We began to question this treatment plan after the meeting with Dr.Gore (the clinical coordinator) on Friday. The term “Radiation Necrosis”(death of tumor and normal brain cells by radiation) was not an unfamiliar one to us, but it took on new meaning when it was explained that children who have a lot of necrosis following radiation often do not qualify for any clinical trials.  The reason being that these trials are focused on new drugs and their ability to affect (i.e. kill) live tumor cells and stop them from reproducing. Nothing can be done if the cells are already dead or dieing but the body is unable to keep up with clearing these cells away.  This caused us some concern, but after talking with another oncologist, we decided to continue radiation based on where Bens at in his treatment and the likelihood that radiation still offers a better chance at quality of life than not radiating. The clinical trials that Dr. Gore discussed were here in Denver and still very new (only in Phase 1). We have to get through radiation and a 6wk. follow-up MRI before clinical trials of any kind become an option. On a better note, Dr.Foreman gave the OK to reduce the steroids from 12mg to 8mg. This is good news, now we just have to pray that he doesn’t begin to regress due to the lower dose.

Today was defiantly one of his better days, with some decent energy, less irritability, more strength, and slightly better coordination. He also took a much greater interest in his surroundings and with the whole “Make-a-Wish” discussion. Hopefully this will continue since the Wish Grantors are visiting tomorrow to get Ben’s wish. I still don’t have any idea what that might be. We’ll let you know!

In one of my earlier posts, I mentioned a Dr. Banerji from India who had attracted the interest of some major cancer institutes due to his homeopathic remedy and its possible curative effects on gliomas (you can read his paper here). Well, I’ve been corresponding with him via e-mail, and he will be in the US from Oct. 12^th to Nov.4^th and he has indicated that he would be glad to meet with us! The closest city where he will be spending some time is in Kansas City where he will be staying from Oct.20^th-25^th. I sense a road trip in our near future (Ben will be done with radiation by this time).

Again, I want to thank everyone for their love, prayers, and support. Many people have commented to us how strong we appear to be in the face of such a cruel card to be dealt. This absolutely would not be possible without such a wonderful network of people who care. We draw upon this network for our strength and hope.

They say that love heals all wounds; I hope to god they are right!

Melinda