Steadman Family

    Week three of radiation seems to be going a lot smoother. We are starting to get a feel for the best way to manage ourselves and the kids.  I’ve noticed that Ben seems to have more energy when he has a small mid-morning nap and when he eats small meals through out the day.  The antibiotics have really helped his Bronchitis, and his BMs are becoming more regular. Both of which have contributed to his feeling better. However, the treatments are really zapping his energy, making it increasingly difficult to plan on any activity requiring a lot of walking. It has been suggested to us to get Ben a stroller for those times when he’s just too tired.  We like this idea, but are unsure as to how much we would actually use one. Therefore, we would like to ask everyone to keep their eyes out for a gently used stroller that can carry at least 50lbs (jogging strollers seem to carry more weight). Better yet would be anyone that might have a stroller we could borrow for a short time to help us get a feel for its usage.

    Dean and I also managed to see a therapist on Monday. She was awesome and we both felt a lot of relief to finally have someone there to help guide us through this toughest of ordeals.

    We were contacted by the Make-A-Wish Foundation today. They called to let us know that Ben has been given a wish to make of his very own. The only problem seems to be that when asked what wish he’d like to make, Ben’s response is that he doesn’t want a wish and refuses to make one (sigh).  Maybe the wish grantors will have more success at getting an answer from him than we do. Then again, when Ben wants to be stubborn about something, rarely does he change his mind, especially with strangers.

    Friday will be a potentially big day for us. We meet with Dr. Gore, the Clinical Coordinator for Children’s Hospital. She will fill us in on all the clinical trials currently running that might be a consideration for us after the radiation treatments are done. We’ll keep you posted on what any of those options might be.

I’m so tired I can barely see straight, so that’s it for now. Please continue to pray for Ben’s recovery and keep those posts coming! They are soooo comforting to read. It really helps us remember how lucky we are to have such a wonderful network of family and friends.  We love you all!!!!!!

Peace,

Melinda

I also wanted to let you know how Madie is doing. She is such an amazing little girl! She continues to delight and engage us (including her brother).  Please say a little prayer for her as well, since she has a tremendously difficult road ahead of her.

Is there anything two days off and two pints of Ben & Jerry’s can’t fix?

Today went fairly smooth with a quick trip into my office to drop off some paperwork and use the fax before running out to Ben’s treatment. We’re trying to get his treatment time moved to the mid-morning instead of our current 2:45 timeslot, but that hasn’t worked itself out yet.

I think we’ve finally found a counselor. Or rather, I think my brother Pat found us a counselor. She’s on the same floor as his office, is a cancer survivor and has helped several other families through situations like ours. Melinda and I have an appointment with her tomorrow and are hopeful that this works out.

Saturday never felt so good - no doctors’ appointments and no treatments. A fine day to sleep in, goof off and do as close to nothing possible.

Ben found some energy after staying in his pajamas all morning and went shopping with Melinda. Madie got some much needed play time with the girl next door. And I spent the day staring at the computer monitor, basking in its life-giving glow.

Pure bliss.

Well, it’s the end of the second week of radiation and boy are we ready for a day off! After numerous doctor’s appts. and the daily radiation treatments, Ben’s beginning to get a little crabby. He finally had a meltdown this morning after pleading with us to stay home. Fortunately, he felt much better after releasing some of that pent up frustration, and we were able to move forward with the day. Unfortunately, it was discovered at his pediatricians visit that he has Bronchitis and needs to go on antibiotics. As if he wasn’t taking enough medicines already. Oh well, at least we can finally treat this nasty cough and hopefully get rid of it. As if that wasn’t enough, he’s also become severely constipated, probably due to all the meds. We’ve tried both suppositories and an enema, but I’m not sure if they really helped all that much. I’m thinking of giving him a little bit of coffee in the morning, it always works for
me.:) By now I’m sure some of you are thinking “Hey, too much information” but I’m simply not capable of caring right now.

  We did manage to get in a little bit of time at the zoo today between appts. That really seemed to help both of the kids perk up and feel better. There are definitely more zoo days ahead of us.

   I would like to thank anyone and everyone for your constant support and prayers. There is absolutely no way that Dean and I could get through this without all of you. We feel so incredibly lucky to have you. Many people have asked us what they can do to help. Please understand that although Dean and I acknowledge that we do need help, we are unsure as to what exactly that would be. Not to mention the fact that it has always been difficult for either of us to ask. I’m not sure where I’m going with this other than to say; please continue to pester us about this. It’s the only way we’ll make ourselves define what our needs are and get them met. Also, if you happen to think of something on your own, have at it! Please don’t worry about boundaries and such right now, they are no longer clearly defined for us.

Have a good weekend everyone.

Melinda

I haven’t taken the time to write about myself yet, and I’m starting to pay the price. I’m exhausted from the trips to the doctors; trying to keep Ben’s spirits up; trying to be a good Dad for he and Madie; trying to be a good husband for Melinda; trying to take care of my own mental well being.

 It’s much easier to be “Dad” and to take care of everyone else than it is to take time to focus on me. I keep saying I’m going to put a call into a counselor, but I don’t have the energy. Maybe tomorrow. Maybe Monday.

For now, I’ll turn to old stand-by depression fighter - ice cream. 

Both Friday and Monday were good days. On Friday, the doctors felt that Ben was doing well enough to lower his dose of steriods. This was particulaly good news since they cause some pretty icky side effects. Mainly, they cause weight gain in the face, exteme fatigue, increased irritability, and constant hunger. We shifted his dose from every 6hrs. to every 8hrs, and boy, what a difference! He had so much more energy over the weekend. He even ran after a squirrel for a short distance at the park. It was a great sight to see. Monday’s doctor appt. was even better. He did so well in the exam, that Dr. Foreman decided to change Ben’s appt schedule from twice a week, to only once a week. This may seem small, but at this point, we’ll take what we can get. We also meet with a doctor next week who will fill us in on any clinical trials that we might be interested in. Since this type of cancer has no known cure, our hope must lie with other unconventional treatments. Therefore, Ben has begun taking some homeopathic and/or herbal remedies recommended by his naturopathic doctor. Some of these have anti-cancer properties that are meant to attack the tumor, while others are meant to help with all of the side effects associated with the steriods and the radiation treatments. Two in particular are recommended by a homeopathic doctor in India who has attracted the interest of the National Cancer Society (in a good way). He claims that when these two remedies are taken together, they have caused several of his patient’s gliomas of the brain to go into full remission! Let’s keep our fingers crossed that we see a similar result.

Well, I guess thats probably enough for everyone to have to process for right now, and it’s getting late. Please feel free to call and talk to us if you have any questions about any of this. It helps us to share this with others and it will help others to understand what we’re going through.

Melinda 

Last week was exhausting for us. Seven doctors appointments, countless trips to the pharmacy, a broken washing machine and family photos. Too many miles in the car with way too much mental baggage.

Ben’s keeping his spirits high and has had a fair amount of energy considering the number of radiation treatments he’s getting. He’s really enjoyed the new toys and treats that everyone has been sending, but it’s also getting a little overwhelming. I know, it’s hard to believe that a six year old is sick of toys and candy, but he really wants to rest right now instead of play.

Thanks

Just for this morning, I am going to smile when I see your face and laugh when I feel like crying. Just for this morning, I will let you choose what you want to wear, and smile and say how perfect it is. Just for this morning, I am going to step over the laundry, and pick you up and take you to the park to play. Just for this morning, I will leave the dishes in the sink, and let you teach me how to put that puzzle of yours together.

Just for this afternoon, I will unplug the telephone and keep the computer off, and sit with you in the backyard and blow bubbles. Just for this afternoon, I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck, and I will buy you one if he comes by. Just for this afternoon, I won’t worry about what you are going to be when you grow up, or second-guess every decision I have made where you are concerned. Just for this afternoon, I will let you help me bake cookies, and I won’t stand over you trying to fix them. Just for this afternoon, I will take us to McDonald’s and buy us both a Happy Meal so you can have both toys.

Just for this evening, I will hold you in my arms and tell you a story about how you were born and how much I love you. Just for this evening, I will let you splash in the tub and not get angry. Just for this evening, I will let you stay up late while we sit on the porch and count all the stars. Just for this evening, I will snuggle beside you for hours, and miss my favorite TV shows. Just for this evening, when I run my finger through your hair as you pray, I will simply be grateful that God has given me the greatest gift ever given. I will think about the mothers and fathers who are searching for their missing children, the mothers and fathers who are visiting their children’s graves instead of their bedrooms, and mothers and fathers who are in hospital rooms watching their children suffer senselessly, and screaming inside that they can’t handle it anymore.

And when I kiss you good night, I will hold you a little tighter, a little longer. It is then that I will thank God for you, and ask him for nothing, except one more day…

~Author unknown~

Big day with several appointments…

 First, Ben had his check-in with Dr. Foreman, our neuro-oncologist at Children’s Hospital. He’s very pleased with how Ben is responding to the decadron steroid and answered several of our questions.

More importantly, Dr. Foreman introduced us to Pete, Hope and Sam Walsdorf. Sam is a little boy who lives in Littleton, is around the same age as Ben and has the same type of tumor. Sam is in his fifth week of the radiation treatment and has just started physical therapy to help him walk again. His parents are wonderful people who shared a ton of information with Melinda and I in just a few short minutes. We’re looking forward to talking some more with them and finding a way for  our two families to help each other.

Ben’s second appointment was out at Fitzsimmons to get his first radiation treatment. The treatment itself lasts just a few minutes, but Ben has to lay perfected still with his head held in a custom made mask. Today’s treatment also required an additional set of x-rays to verify that the positioning is correct before giving him his first exposure. The doctors requested that Ben not eat after 8 AM in case they had to sedate him for the treatment - which would add another hour or so to our daily time at the doctors. So now we’re asking a scared, hungry six year old on decadron (a steroid whose main side-effect is the munchies) to lay perfectly still. Melinda and I were both on pins and needles watching Ben on the monitor - hoping that he could endure.

He was so calm that the nurses thought he had fallen asleep. He told his nurse that “it wasn’t so long” as she walked him out of the treatment room. Then the decadron kicked in and we were all off for pancakes. 

Ben Steadman is your standard six year old boy. He loves dinosaurs, pirates and riding his bike and scooter around the neighborhood with his little sister and friends. He’s the type of boy that can go through an entire box of band-aids in a weekend and still be ready for more action.

He’s also a very gentle and loving kid. He has several blankets and stuffed animals that he cuddles with and can’t go to sleep without songs from both Mom and Dad. He gives hugs when seeing friends and insists on sharing with his sister.

Ben’s life started to change in August, 2005. We started noticing that he was having problems with his balance and eye-hand coordination. He began bumping into walls and using two hands on the railing when climbing stairs. His symptoms slowly became more pronounced and began to include slowed speech and slight drooling. After a few doctor appointments and phone conversations with a neurologist, we took Ben into Children’s Hospital of Denver. They performed several tests of his motor skills, a CAT scan and an MRI. Ben has diagnosed with a diffuse pontine glioma - an inoperable tumor in his brain stem.

He is a very strong little boy and is surrounded by his family and friends. Our family is using this blog to give updates on the progress of his treatments, to share stories and to express our love for such a beautiful kid. We welcome your comments, your emails and your prayers.