Marathon not a Sprint
We are still hanging in here. We are celebrating 17 months of remission and set to scan again in the next couple of weeks. There's lots of recovery still to be done. Radiation and chemotherapy, while they may have saved his life, there is a price to pay. I'm not going to dwell on all of it.Nic is known as the "joy bringer" whereever he goes. His grandmother says he's never met a stranger. Nic has become quite popular wherever he goes and remains a happy little boy. I'm working on a book-a recount of our experiences. I got great response to the few posts I have here so expect updates in the near future and more from me on the other side of the wall!
If you found your way here because your child was diagnosed with this horrible disease, feel free to email me or post a comment asking any questions you may have about the process or recovery. I know how it is when you're looking for someone else who may understand you. I found the greatest advice I ever received was from other parents. I'm not a doctor but I'm an expert in my son's situation so any support I can offer I'm happy to extend. Please understand, I check in when I can. Recovery requires all of my time so it's hard to do things like keep a blog up to date or a website for that matter!
Suzanne Somers, “Knockout”: Why is THIS book a Bestseller?
There is so little information out there in the way of actual documented text about my son’s specific cancer but I still read what's available on the overall topic. I kept coming across this book and decided I would make the purchase in hopes of finding alternatives that I could incorporate into my son’s treatment or other options for his treatment plan.
Her book is a self-stated guide to doctors and to other options for cancer treatment. Somers’ goal is to raise awareness of these other cancer-treatment protocols and inform “laypeople” they do not have to accept chemotherapy, radiation, and surgery as their only options for treatment. In fact, in numerous testimonies given by her and some of the doctors she interviews, they indicate that these treatments only work in a limited number of cancers.
Positive points: Knockout does force you to think and if you manage to make your way through some of the wordy responses you will actually find extremely interesting information about different approaches to cancer treatment that seem to be working for patients. Somers has included patient testimonials in the book. The only thing that remains unclear is the actual percentage of success these Doctors are actually experiencing. Knockout is a decent place to start but I would suggest taking the information and then continuing to research these alternatives and many others. The book does open your eyes to the possiblities of other things and in that respect its does have some value.
The Downside: The book left me feeling depressed and angry more than I felt it helped me. I am open to alternative methods but they are not open or available to me. One of the treatments start out requiring an $18,000 deposit, along with a $7,600 a month bill for the duration of the time you are on the treatment plan. Another doctor has patients taking anywhere from 150 to 300 supplements a day at a high cost and even if you are willing and able to pay the bill, he is extremely selective in the patients he will accept. Most of the resources listed are in California. Knockout is more of a book for those with money. The interview with her gynecologist is extremely difficult to understand which was surprising considering it focused on hormone replacement therapy and based on previous conversation in the book, this is a huge proponent in Somers success fighting cancer. Lastly, the information is tainted by her obvious anger and disgust with chemotherapy and radiation. You can hardly see past it to get to the important points the doctors are trying to make.
I know the traditional medical community has not been open to alternative approaches in most areas of medicine. It just seems to me the alternative side has started to become just as closed minded. If the two sides cannot have a conversation and fuse the two treatment options together, consumers can never reap the full benefits of the information that is available.
I’m still confused and when you are working on borrowed time, it’s very difficult to gather information and then sift through valid options for you or your loved one’s care. If you're a parent seeking alternatives for your child's cancer treatments and you don't have a lot of time or money, skip this read and move on to other resources. If you're looking for more natural methods to supplement the traditional ones, try reading Anticancer: A New Way of Life by David Servan-Schreiber MD, PhD
Doctor Do Nothing
Dear Dr. Do Nothing,
When you see copies of Nicholas’ medical records come across your desk do you think of him? Do you remember Nicholas’ long curly eyelashes? The ones that fell out along with every other strand of hair on his body after chemo? Do you remember the smooth even tone of his skin? The one that is darkened now from the radiation? Do you remember how you used to put the stethoscope up to his chest to listen to his heart and check his airway? You know the spot where they inserted a tube in his chest to deliver the chemo, transfuse him with blood, and IV fluids? Do you remember how he used to run around the office and push the chair up against the door because he liked the way the wheels rolled? You know, before he stopped walking?
I’ve written this letter a million times in my head. The first time I can recall rehearsing the words, my thoughts were accompanied by the lights and rhythms of the I.C.U. I sat next to my 3 year old son feeling empty from the shock of the bomb that exploded when they said he had brain cancer.
I can hear a nurse’s voice echoing in my head saying something like “it’s a good thing you brought him in when you did. He would not have made it through the weekend.” It’s followed always by our last conversation which haunts my memories with amazing clarity. It was three weeks into Nicholas being very sick; after several visits and a multitude of phone calls to you. All of which you told me he either needed antibiotics or to give it time.
I can still envision the heated argument I had with one of your colleagues regarding the approach to his well-being and emphatically pushing that “something else is wrong with him” just three months prior. You all kept writing prescriptions and sending us home.
The day I called you, I was nervous about Nicholas. I told you his symptoms and you told me I could bring him to see you. We’d just been to see you three days prior. You said, “It’s up to you.” I answered you immediately, “yes, when can I bring him.” You hesitated and then said, “It’s almost 4 and I see my last patient at 4:30. You will need to hang up and call back to the receptionist to get an appointment for tomorrow morning.”
Do you know that when I called back to make the appointment the receptionist told me you weren’t even going to be on schedule the next day? I made an appointment with Dr. Zero-Bedside-Manner and then strategically planned taking Nicholas to the ER at Children’s in DC. Do you know that when we got there his vitals were extremely bad? Do you know that when I called your office the morning after they found a mass in his brain, before I could complete the sentence I was choking on, your receptionist scolded me for not calling earlier to cancel my appointment? Do you know that when I called back for your office to help me gather whatever information I could to facilitate a second opinion about his condition, you and your office told me the hospital could take care of it? Even if they could, why wouldn’t you do this for Nicholas? Didn’t you owe him that much?
Do you know that when we finally got Nicholas to the hospital he was almost blind, in severe pain, his brain was swollen, and he had brain cancer with metastatic disease down his entire spine and into the spinal fluid? Do you know that he had to have 2 surgeries and barely any recovery time before he started 6 months of chemo? I’m just wondering because you haven’t even picked up the phone to call and ask me how his treatment is going. I know you get the documents and updates because your name is on his file.
I see fire every, single time I make note of your name on his arm band, on his prescriptions, hanging on the chemo bag in his room. It’s the blackest kind of irony that your name would be there as if you’re protecting him, overseeing his care; as if he was a priority. You have no clue or connection to the reality of all that is going on. I hope you remember Nicholas every time you treat a patient. You think about each precious child you lay hands on. This cancer did not have to stem as far as it did, if only you’d paid more attention to what I was saying, what Nicholas was doing, and the medical evidence you were gathering. If only I had listened to you, Nicholas would probably be dead. The only two things between you and my son's life, your patients lives, are those two words-"if only"
Sincerely,
Mother Warrior
Tonsilitis in the Valley
“Where can I find your books on cancer?” This is the question I asked at the customer service desk of the bookstore. Perhaps there was something in the tone of my voice that caused a frantic reaction in the woman behind the desk. I watched her rush through the computer searching for this section as I stood there. She turned on her heel at some point and I lost her behind the shelves somewhere near Hobbies but I soon found her crouched down near the bottom of a shelf in the Diet and Wellness section.
“What are you looking for? There is a book here, let’s see... “How to Prevent Cancer.” This has different meals and preventative tips.” She paused obviously expecting a response but what was I going to say? It was entirely too late to be preventative. She kept moving and we plowed through the medical section and ironically found ourselves at the end of the store in the children’s section. There were exactly four books in the store about cancer and none of them were about children and none of them were going to help me.
I was vocally disgusted as I breezed past the selection of books on addictions to alcohol and drugs. Are we the only people dealing with this? We’re stuck on some stupid island we can’t get off of and nobody seems to know anything about ANYTHING!
Two months ago I was an overworked wife and mother of two. I was just like every other mother who wanted the best for her children. I didn’t take care of myself; I was stretched too thin, and with guilty desire longed for a richer life in which I did not have to work. I did well in my category and managed to fit the profile every, single time.
“Oh, now here is a new book that Suzanne Somers has done. She survived Breast Cancer and she interviews doctors who are having breakthroughs in cancer treatments”. I accepted the offer and nodded with a fake smile.
“Thank you so much for your help.”
“You’re welcome. I hope this is able to help you,” she stood there, her head titled to the right, searching for more from me. Perhaps she wanted to know if I had cancer. I didn’t figure it made a difference if I did or not. The silence lingered long enough and she eventually moved on to help someone searching for another book. I flipped through a few pages of the book and put it back in its place on the shelf.
I stood in the bookstore searching for answers to my questions but there wasn’t a single typed word that applied to my situation. I could always use tips on a fast and easy weight loss plan, the new way to wear my hair or how to do my make-up for the upcoming season; how to start my business, get my finances under control, organize the house, raise a well-rounded child, please my man, and be every woman. The purpose is not to apply the information immediately, rather to hoard this knowledge in an effort to create elaborate plans and visions of what my life will be like when everything finally falls into place.
Tonight, absolutely nothing applied to me. Not one single book, magazine-no printed word. I could not envision a utopian paradise and frankly, nothing anyone was saying mattered at all. My family has cancer-my 3 year old has brain cancer and despite optimism it doesn’t change this reality. I stood there looking for answers, a how-to-breath-again guide. Something to read that actually mattered. I don’t fit in. Anywhere.
The blaring lights shake me back to the brightly lit surgical floor in the children’s hospital. You can never know what this life is like. What it means when a father puts his head in his hands while waiting for his son to return from surgery; a sea of blue and green running around him having a perfectly ordinary day as he tries to remember how to stand up from the chair. Clutching a plastic bag packed with clothes, rubbing his wife’s back with the other he will pretend everything is fine.
There are parents on the other side of us rejoicing over the successful completion of a tonsil removal. I hate them; we hate them. Our children will be returned to us after a surgery-god has carved a pathway searching for answers and we will only be just beginning. You can never know what it’s like to prepare yourself as a mother for what your child might look like after they have cut him open for the first time.
"Once we give him the anesthesia, he will be sedated and won't remember anything that happened." I stood over my little boy and the only thing I could think of was how we had betrayed his trust. We lulled him to sleep with the magic potion and told him everything was okay. But he was going to wake up and know that it wasn’t. I felt no urge to cry. I can distinctly remember my knees giving way and the room spinning but I managed to find balance by clinging to the nurse’s instructions on how she was going to relieve his pain. We will never know another way of living.
Life on the other side of the wall is a woefully beautiful valley steeped with endless borders. You can feel the warmth of the sun on your face and the cold wind run straight through you. It’s a lonely and tiring trek no matter who you take because the devastation cuts each and every one of you in half and you’ll spend the entire time trying to find ways to balance the difference.
There is nothing to talk about accept the regurgitation of medical information and discussions about plans. There is no sound because there are no words in any spoken language to explain the situation or answer your questions. There are really only two questions. Why us and are we going to survive this? There is never any truth in the answer so you turn the volume down and read the bent eyebrows, painted smiles, or the deliberately professional posturing of a doctor. We are linked one broken heart to another. Each frayed edge caught one on the other as we pass by.
Mommy Tonsils walked passed our recovery section and leans her head to the side with empathy at the site of my poor little baby and utters “how precious", but she really means "thank God." I absolutely hate her. She doesn’t belong here. She is not like us.
I put the parenting magazine back on the shelf, wrapped my sweater around me, and walked back out into the cool night where the shopping center corridor was lined with holiday lights and stars; insignificantly beautiful. The walk to the car seems longer and my legs are heavy; gravity is stronger in the valley. I think of how we might spend Christmas in the hospital with the other families and wonder if it will be like Christmas at all. Much like everything else these days, it doesn’t really matter.
Tonsilitis in the Valley
“What are you looking for? There is a book here, let’s see... “How to Prevent Cancer.” This has different meals and preventative tips.” She paused obviously expecting a response but what was I going to say? It was entirely too late to be preventative. She kept moving and we plowed through the medical section and ironically found ourselves at the end of the store in the children’s section. There were exactly four books in the store about cancer and none of them were about children and none of them were going to help me.
I was vocally disgusted as I breezed past the selection of books on addictions to alcohol and drugs. Are we the only people dealing with this? We’re stuck on some stupid island we can’t get off of and nobody seems to know anything about ANYTHING!
Two months ago I was an overworked wife and mother of two. I was just like every other mother who wanted the best for her children. I didn’t take care of myself; I was stretched too thin, and with guilty desire longed for a richer life in which I did not have to work. I did well in my category and managed to fit the profile every, single time.
“Oh, now here is a new book that Suzanne Somers has done. She survived Breast Cancer and she interviews doctors who are having breakthroughs in cancer treatments”. I accepted the offer and nodded with a fake smile.
“Thank you so much for your help.”
“You’re welcome. I hope this is able to help you,” she stood there, her head titled to the right, searching for more from me. Perhaps she wanted to know if I had cancer. I didn’t figure it made a difference if I did or not. The silence lingered long enough and she eventually moved on to help someone searching for another book. I flipped through a few pages of the book and put it back in its place on the shelf.
I stood in the bookstore searching for answers to my questions but there wasn’t a single typed word that applied to my situation. I could always use tips on a fast and easy weight loss plan, the new way to wear my hair or how to do my make-up for the upcoming season; how to start my business, get my finances under control, organize the house, raise a well-rounded child, please my man, and be every woman. The purpose is not to apply the information immediately, rather to hoard this knowledge in an effort to create elaborate plans and visions of what my life will be like when everything finally falls into place.
Tonight, absolutely nothing applied to me. Not one single book, magazine-no printed word. I could not envision a utopian paradise and frankly, nothing anyone was saying mattered at all. My family has cancer-my 3 year old has brain cancer and despite optimism it doesn’t change this reality. I stood there looking for answers, a how-to-breath-again guide. Something to read that actually mattered. I don’t fit in. Anywhere.
The blaring lights shake me back to the brightly lit surgical floor in the children’s hospital. You can never know what this life is like. What it means when a father puts his head in his hands while waiting for his son to return from surgery; a sea of blue and green running around him having a perfectly ordinary day as he tries to remember how to stand up from the chair. Clutching a plastic bag packed with clothes, rubbing his wife’s back with the other he will pretend everything is fine.
There are parents on the other side of us rejoicing over the successful completion of a tonsil removal. I hate them; we hate them. Our children will be returned to us after a surgery-god has carved a pathway searching for answers and we will only be just beginning. You can never know what it’s like to prepare yourself as a mother for what your child might look like after they have cut him open for the first time.
"Once we give him the anesthesia, he will be sedated and won't remember anything that happened." I stood over my little boy and the only thing I could think of was how we had betrayed his trust. We lulled him to sleep with the magic potion and told him everything was okay. But he was going to wake up and know that it wasn’t. I felt no urge to cry. I can distinctly remember my knees giving way and the room spinning but I managed to find balance by clinging to the nurse’s instructions on how she was going to relieve his pain. We will never know another way of living.
Life on the other side of the wall is a woefully beautiful valley steeped with endless borders. You can feel the warmth of the sun on your face and the cold wind run straight through you. It’s a lonely and tiring trek no matter who you take because the devastation cuts each and every one of you in half and you’ll spend the entire time trying to find ways to balance the difference.
There is nothing to talk about accept the regurgitation of medical information and discussions about plans. There is no sound because there are no words in any spoken language to explain the situation or answer your questions. There are really only two questions. Why us and are we going to survive this? There is never any truth in the answer so you turn the volume down and read the bent eyebrows, painted smiles, or the deliberately professional posturing of a doctor. We are linked one broken heart to another. Each frayed edge caught one on the other as we pass by.
Mommy Tonsils walked passed our recovery section and leans her head to the side with empathy at the site of my poor little baby and utters “how precious", but she really means "thank God." I absolutely hate her. She doesn’t belong here. She is not like us.
I put the parenting magazine back on the shelf, wrapped my sweater around me, and walked back out into the cool night where the shopping center corridor was lined with holiday lights and stars; insignificantly beautiful. The walk to the car seems longer and my legs are heavy; gravity is stronger in the valley. I think of how we might spend Christmas in the hospital with the other families and wonder if it will be like Christmas at all. Much like everything else these days, it doesn’t really matter.
7 Essential Things You Need for Hospital Stays
And the reasons why
Whether your child’s treatment is administered in-patient or out-patient, you are bound to spend a great quantity of time in the hospital battling fever, nutropenia, dehydration, eating issues, etc. Whatever the cause, always be prepared when going to the hospital. It’s a tiring trek but one that should not be compromised.
1. Towels, washcloths, pillow cases, at least 2 or 3 flat sheets, and a blanket
It never ceases to amaze me how trusting we are when we enter the hospital. We expect everything to be taken care of and hold all of their standards for care above our own. Do not use the towels and washcloths at a hospital on your child’s body, in particular, when they are facing compromised immune systems. You have to understand that hospitals face the same problems all businesses face. Some of the towels and washcloths have been around for many years. They are used to wipe the floors, clean and wipe down rooms and toilets. They have had blood on them, vomit, and all kinds of bodily fluids excreted on them. It’s not logical to think that once linen is soiled it would be thrown out. Hospitals try their best but washing and sanitizing is as efficient as the person loading the machine. If you overload it, it won’t be as effective. We even bring our own pillows but we do use the hospital pillows because they throw those out after each use. I’m not sure how all hospitals operate so you would need to ask. We use our own pillow cases and have just learned to bring a flat sheet to put on top of the sheet on the bed. Depending on how sick your child gets during treatment or for their stay, you will need more than one. Our floor has a free washer and dryer. If yours does not and you don’t live close enough to home to send the laundry with someone to wash for you and return, then bring enough of these items to cover your stay.
2. Large 13 gallon bins and a dolly with bungee chords
It’s so much easier to pack everything into a bin and load it up in your car. It allows you to pack more and keep it organized. Or, you can be disorganized and throw all your stuff into the bins and make sure it gets to the hospital even if it’s out of order. It’s a great way to keep track of your things in the hospital. You can pack dry foods and snacks (hospital food is expensive and they may not have your child’s favorite food). You can pack their favorite toys or dvd’s (many hospitals have tv carts and dvd players). You can even throw your clothes in there. We have 3 bins but depending on the size of your car and how heavy you travel you may need more or less. You could also incorporate smaller bins if necessary. Stack your bins on the dolly and use the bungee chords to secure them and roll everything to your room. We do not travel light so when we stay in the hospital we move in so this usually requires 2 or 3 trips to the car. The bins can be bought for under $10 at Wal-Mart or Kmart. If you can’t afford the dolly and bungee chords, the hospital may have them available. Before we got the dolly we used two wagons from the kids playroom. You do what is necessary.
3. Notebook and a pen
It’s important to keep up with day-to-day events and information so that you can keep track of your child’s care. You should always have a list of your child’s medications with you because they can change in dosage and quantity. You can list changes as they are happening. It’s important to track blood counts and understand what is going on with reactions your child is having to medication, protocol, and even people. I used to keep a list of nurses I wanted assigned to my son. Now I just keep a list of nurses I don’t want assigned to my son (it’s much shorter than the other list). Do what works for you but always have your notebook and pen available.
4. Mop, dish soap, dishrag, laundry detergent, and SAFE cleaning products
Do not make the mistake of entering the Hem-Onc (Hematology-Oncology) floor and assume that it has been kept in immaculate care. Hospitals are germ-infested places and infections are going to happen no matter what. But you can keep your child’s environment as clean as possible. Do not be afraid to ask Cleaning Services what their standards of care are and how often the room should be cleaned. But don’t trust upon entering a room for the first time that it was properly cleaned. This becomes even more important for patients who will be receiving Bone Marrow Transplants and staying in the BMT wings. These rooms are to be specially cleaned. The floors should be stripped and the room should be sanitized top to bottom before you are admitted. Once again, hospitals face the same issues any business faces with employees. Not everyone is going to do the right thing. Don’t risk it.
The Clorox mop is great for this because it doesn’t require batteries and can be broken down to fit back in its box. You do have to be careful with the cleaning fluid. First, it can leak quite a bit, and second, you don’t want strong chemicals in the room. First use the mop as a duster but be sure to wet the pad with a little water to pick up dust and dirt. Then, I go back through and use the same professional quality cleaning products the hospital uses (you can purchase these from commercial sites) and wipe the floors. I replace the pad and do the same thing to the ledges and if possible the walls. Otherwise I use a cloth (a hospital washcloth) and wipe down the walls, the bed rails, clean out the tub and wash down the trash cans. I THROW OUT THE CLOTH AFTERWARDS.
5. Playmats (Foam Flooring/Interlocking EVA Flooring), favorite toys, and toys to get them moving
One issue your child will face with long stays in the hospital and the inevitable side effects of treatment and being connected to an IV is limited mobility. Limited mobility contributes to atrophy, drop-foot, decreased circulation, and other physical issues. It can also be a drag on the spirit. Interlocking mats are a great tool because you can use as many or as little as you want in the room. We usually use four and are able to put them together and bring our son out of the bed to walk over to the mat and play on the mat. It gives him a small space to move in that doesn’t compromise his IV but also gives him a sense of freedom and playtime. I’ve seen the mats cost as much as $59. We bought them for $19.95 at BJ’s Wholesale. Make sure they are fire retardant and you wipe them down each day with disinfectant. Prior to leaving the hospital I stand them up in the tub and spray them down. We store them easily in the trunk of the car. Search for Foam Flooring or Interlocking EVA Flooring when browsing the web in search of great deals. Make sure they are fire retardant and safe for your child (check age range and compatibility for your child’s condition). They come in different colors depending on where you are able to find them.
6. Thermometer
You need to maintain the ability to do as much as possible for your child over the course of their stay in the hospital. If your child is in the hospital for fevers, it’s important you be able to check their temperature even when a nurse or technician is unavailable. It’s better you stay in front of fevers because once they start to get away from you it can be very hard to slow them down. Keep a basic underarm thermometer (Do not check your child’s temp rectally or use an ear thermometer when they are on chemotherapy. Tearing of the anus can occur and cause internal bleeding and some of the chemo drugs compromise hearing so the ear thermometer can be damaging. Check your hospitals guidelines for axillary (under arm) and oral temperatures. They usually check temps in Celsius so get a chart that converts Celsius to Farenheit. Know what a temperature is and is not. It’s different for children on chemotherapy)
7. BIG BALLS
This an essential item for you. If you don’t have any balls you need to grow some. Like I’ve said before, check your low self-esteem at the door and do not be driven by your fear and pain. There is a time and a place to address these emotions but not during the course of the day when you need to get your child the things they need. You are leading this fight. Your child is enduring things you cannot understand (unless you have been through it yourself) so that they can get better. They need your strength and support. Do not be afraid to ask for what you want, get clarification for things you don’t understand, or to say NO! But most importantly, do not be afraid to ask for the things
YOUR CHILD needs.
by Leenadria
Riding the Shockwaves
Balancing life in the immediate wake of an earth-shattering diagnosis (like “your child has cancer”)
A friend of mine sat me and my husband down one day, about a month after our son’s diagnosis, and says, “Now that the initial shock has worn off, do you guys have a plan for how you are going to pay the bills and manage your older son?” She’s well-meaning and one of our greatest supporters but the bottom line is that the shock will never wear off and any plans you make will be ad-hoc for at least the first few months.
Every single morning I wake up, I am reminded “YES! This is my life. This is OUR life, and there isn’t a damn thing I can do about it.” I’m not bitter. It’s just the truth. One of the most difficult things to accept about dealing with a child with special needs is that nobody understands what you are going through, except people who are going through exactly what you are going through.
When we got our son’s diagnosis we were devastated. In the middle of this we had to hear what was being said to us and make decisions. They felt more like ultimatums. All I heard was do this or he will die. You don’t have time to sit down and weigh the alternatives. It’s this or death. We signed papers and let them do whatever they felt they had to do. Looking back on it now, I didn’t even know half of the things they were putting through his IV at the time. As long as when I checked him he was breathing, I was accepting.
We were in a position of weakness. We wanted them to save our son and through our actions and emotions we were begging for their help. It’s the worst way to approach the situation. Rest assured, however, there is little time to wrap your head around the information being thrown at you and the options you have available to you. You must get control very early of the direction in which your child’s medical care is going or you will find that you lose a great many options for their care.
For example, if your child is facing cancer, and you want access to a hospital like St. Jude’s, your child cannot have received treatment for cancer or they are automatically disqualified from their programs. These are things you MUST know and it’s not likely anyone will tell you.
You have no choice but to be strong in the situation and arrive at your true self immediately. What does that mean? It means, if you have been living up to half of your potential or none of it at all, you must rise to this occasion like Poseidon from the ocean with your staff and begin to battle with a monster size force. For me, the only way to do this was to arm myself with the word of God. He is larger than any life force and I am His child made in His likeness. That makes me someone to be reckoned with.
For you, this might be something else. You may draw inspiration from strong people around you or from others you run across in your situation. For me, there is nothing more powerful than knowing He has my back when I enter a room because it gives me equal if not superior footing with others, especially those who have lost faith in all things possible.
The hard truth to you Mothers out there who are now the primary advocate for your child, is that there is no room for low self-esteem and many of the dysfunctions you have made room for in your life. You do not have time to second guess yourself or doubt your instincts. You must not be afraid to speak your mind and be judged. It may sound funny to you reading it here but when you spend weeks at a time in the hospital it is very easy to get caught up in the same insecurities you danced with in your former life; before you became a Warrior.
You will have to stand down the scariest moments of your life and there is no way around them. What’s worse is you will need to do it all with a smile on your face and joy in your voice because your child needs to know that you believe in them and in their ability to defeat the beast you are facing. You will not be strong every waking moment of every day and you will have days where you may have trouble remembering how to breathe, but you will have to fight the depression and I don’t know how you do that without something positive you can hold.
While you are learning how to maneuver the new world you live in, you will need to figure out what your immediate needs are and then work from there.
My list of priorities:
1. Be there for my son every single day
2. Understand ALL of our options
3. Get him the best medical care possible and ensure he has continued access to medical care
4. Make sure my other child continues to be provided for and his educational goals are met
5. Make sure my other child’s emotional needs are being met
That was where I started- five simple steps. You have to understand your options and if you don’t have immediate resources available to you to accommodate these needs, then you must find them. Do not be afraid to ask for help. There are plenty of organizations out there and plenty of help. You would be surprised at how many people who love and care about you are willing to lend their support; both physical and financial.
I’m not going to lie to you. It’s exhausting and some days are better than others. Some days you will get it all done and others you will have spent the entire day comforting your child. There is no easy balance or formula.
Each day will present new challenges, new information to absorb and accept. There will be new and shocking events that will set you back. You must arm yourself with support. If you can’t get it from friends and family, now is the time to actually use your medical insurance and talk to a psychologist; find a support group; talk to other parents in the hospital. No, this fight is not for everybody, but it is for you if you were chosen.
by Leenadria
These are just some of the resources available to you if you are fighting cancer. Talk to your hospital social worker about other options you may have.
http://www.nlm.nih.gov/medlineplus/cancer.html
www.ssa.gov (determine if your child qualifies for disability)
www.curesearch.org (chances are, some if not all of the treatments recommended for your child can be found on this site along with information about the trials, their success rates, potential side-effects)
www.nationalchildrenscancersociety.org
www.google.com or www.yahoo.com (don’t be afraid to search online for information)
Your local library is a great resource. You can go online and login to their database and search journals and other documents that are available. Contact your local library for help.
Your local Social Services office-find if your child qualifies for Medicaid or other assistance. Most hospitals have social workers dedicated to the Oncology wing that can assist you with all of these steps. Whether they do or not you can gain access to these resources.
Little Timmy Sucks
(written 2007)
I am not a soccer mom. I need to make this poignantly clear for those who suspect. I don’t volunteer to bake snacks for the entire team, coaching or paint “Go Team! You’re Number One” in neon paint on my car windows. I threw out the bumper sticker I got from my son’s school that said “My Child is an Honor Roll Student” because I’m not tarnishing the finish on my SUV. That’s right, I have two children and I don’t drive a Minivan. In fact, I refuse to drive a minivan. Although on a recent road trip with several family members I found myself in awe of the cargo space, roominess, and comfort of the Mini-my-life-is-for-my-kids-vessel. I like to hear the base in my music so I pump it loud and bounce down the road to the likes of Adele, Black Eyed Peas, and Jay-Z. This is not a good look for a mini-van.
For the first time since we moved to the suburbs my son was going to be playing soccer through the local boys and girls club on the seven and eight year old team. I was excited for him because he’d been playing in his father’s league on the children’s team. The coaches are loud and hard on the children at times but there’s no damaged self-esteem lying on the field after a game. I was interested in seeing how he’d interact when he got to play a competitive game with various teams on this city league. I figured he’d be playing with seasoned veterans. Suburban mom’s have their children merged into intramural sports when they start walking. It took me two years to figure out how to register my son for soccer.
We pull up anticipating the training that lay ahead and to my horror there were soccer moms EVERYWHERE! Minivans trailed the parking lot from end-to-end. The coach’s daughter is there in pink booty shorts completely ignoring her father and the other children have a twenty second attention span. I could not correct my son because I was relegated to the sidelines with the other parents. This is where one of the mother’s does the welcome speech as I’m obviously new. Each week they rotate who brings the snacks and drinks and she’s the “volunteer parent” for the team. I followed the queues and volunteered to supply snacks for the first game.
The coach is a softy and he emphasizes that the children are there to have fun and learn how to play. My competitive side rolled its eyes. I go along with this for the time being but as I watch my son go from being a respectful, obedient child to a bouncing ball of light and joy who can’t follow instructions, my irritation reached new heights. As we rode home he proclaimed how fun soccer was and he “couldn’t wait for his first game on Saturday.”
We arrive just in time to make the kick-off. Our softy coach spent the entire game clapping and shouting “good effort” as these kids fumbled around the field with no clue what to do. The children on the other team were plowing our kids down like a hurricane. The coach yelled at them to “GET IN THE GAME!” “GET THE BALL DOWN THE FIELD!” It was everything I craved for in Softy. Parents were on the sidelines cheering and coaching from their seats. Now this is my kind of party. Our coach was still all peace and love so I fell in line with our team’s parents.
We were losing 1-0 and our goalie, Little Timmy, was in the net chasing butterflies and leaves. Of course, he missed the ball and the opposing team scored. Then it happened. My son became one of “those” kids. He stomped up to Little Timmy and yelled at him. “Keep your eye on the ball! You go where the ball goes! You don’t just stand there!” Then he huffed back onto the field shaking his head in amazement at Timmy’s obvious wanton skills. This was completely out of character for my Little Beckham.
Just as I began to smile a little at this display of competition, Timmy’s father came flying out of nowhere shouting, “That’s okay Timmy. That’s okay! You’re doing a good job! You’re back here all by yourself”.
Isn’t he supposed to be in the net by himself? His team lost and despite the coaches efforts to push his freakish “it-doesn’t-matter-if-you-win-or-lose-its-how-you- play-the-game” garbage the children were upset at the loss. Softy needs to play to the children’s strengths and not just put kids in the goal because they want to be there.
As the weekends pressed on, the children got better and they actually won a game. I suspect the parents had been coaching their children at home because they learned nothing in practice. I found myself looking forward to the games, packing the cooler with drinks just in case no other parents remembered and I bought one of those fold out chairs so I could be comfortable on the sidelines. I felt a slight urge to paint neon cheer signs on my car. I even gave Little Timmy a hug the day a ball smacked him in the face and he just kept on playing. I socialized with the parents and though we have very little in common I’ve managed to have a good time getting to know them. Nobody asked me crazy questions and we found common ground through our children.
I realize I may have some soccer mom in me after all. A little part of me will live vicariously through my son. The athlete I never was, I suppose. But I’m still not going all the way there. I can’t imagine peeling out of the bed early Saturday morning to stand in the cold to watch a bunch of kids fumble around a field with no direction. The season is near an end and though I will not stay in touch with my new found friends, I’m proud of my son’s team. I told my son I was impressed with his progress and could not believe how good Little Timmy had gotten. My son looked at me and said “Mama that is not Little Timmy. That’s Daniel. Timmy hasn’t played since the second game.”
