We’re back!

Some of you may have noticed that for the past several days this website had been disabled and restricted from everyone.  Unfortunately, I needed to make some security changes and updates that would restrict who had access to the information within this blog.  If you are reading this, then I added you to the approved list and you have access.  I anticipate that not all of William’s supporters have access, but this is only due to me not having their email addresses, therefore not being able to add them to the list. If you are aware of anyone that does not have access, but would like to, please have them contact me at Loissklopper@hotmail.com

NOTE- I have also added a Privacy Disclaimer Page to this site. Please take the time to review the policy!

It saddens me to say that decorum is dying in today’s society, and unfortunately it most often affects those that tend to trust the most. Actually, maybe I was just naïve.?

Enough of the sad drama and people that cause it. TIME FOR SOME GOOD NEWS!

Last week William had his PET Scan and Disease Assessment. I spent most of the weekend pondering the outcome and trying not to stress myself out too much with the  ‘what if’s’ and ‘then what’s’. Finally,  yesterday morning I was no longer able to silently sit and wait for the phone to ring. I sent William’s oncologist an email and enquired about the results. The email response I received was not a promising one.  Dr. Anderson mentioned that he had been hoping for a 50% cancer decrease/response to chemo, William only had a 32% and therefore William would most likely not qualify. I was crushed!  After a few more emails exchanging thoughts and possible future treatment plans, I received an unexpected phone call from Dr. Anderson. Dr. Anderson explained that he had a conversation with the director of BMT and after considering all the facts and data, William was approved! (90% approval, 10% depending on any newly discovered chemo or treatments that may be more effective and have less morbidity percentage ) TRANSPLANT IS A GO! 

O’ and I will mention that the 32% decrease in tumor size and SUV (measurement of active cells) deserves and equal amount of enthusiasm!  32% DECREASE SINCE APRIL! it’s AMAZING!

September 11th is the scheduled intake day, transplant will be on the 12th. Yeah, let the countdown begin!

I want to thank everyone for their devoted prayers, love, thoughts, and words of encouragement! MY BABY IS GETTING HIS TRANSPLANT. . 

This is William's journey and we will Keep on Keepin on' and Live Strong with God in our hearts and courage in our souls

Disease Assessment

The past 5 days have been emotionally and physically exhausting on William and me.  William’s body is having a really tough time recovering from the most recent chemotherapy.  Yes, each round is harder than the one before, but that does not mean that the process is any easier. Just a little more expected.  Daily blood draws have lead to four transfusions of blood and platelets, as well as multiple IV doses for different minerals (potassium, magnesium, protein, etc.)

Yesterday, William fought an awful migraine for most of the day. The intense migraine lead to nausea and subsequently a lot of vomiting. Unfortunately, William started vomiting blood. A quick trip to the City of Hope lead to an intense examination, and blood tests. William did get admitted for the night, and was kept under scrutinizing observation.  Thankfully, lab work from this afternoon revealed that William’s body is finally recovering, and retaining the much needed transfusions. William’s oncologists has allowed us to return to the Ronald McDonald House, with added oral supplements

and increased medications.

Tomorrow, William will have a very important scan. PET (The Positron Emission Tomography) scans are used to show detailed results about the tumors and cancer cells in the body. Basically, William will be given a nuclear sugar mixture which is absorbed by the cancer, causing the tumors and cells to glow brighter than anything else in the body. The brighter the tumor, the more active the cancer.  It is really important that there is no new tumors, and that there is minimal active disease. The results from this scan will be used in the Disease Assessment to determine William’s eligibility for the Bone Marrow Transplant.  We really need and want this PET to show that William’s body has responded well to chemo and that there are no new tumors and maximum.cancer death in existing tumors.

We ask that everyone please keep us in your thoughts and prayers! We really need the scan to show cancer necrosis (death) and no new tumors!

This is William's journey and we will Keep on Keepin on' and Live Strong with God in our hearts and courage in our souls.

Not an ordinary Friday

"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." --  Albert Einstein.


Well, we did it. William made it through day 10 without having to go to the hospital! Furthermore, he woke up this morning, day 11, with a big goofy smile on his face and a spunky little attitude. Those of you that follow me on Face Book know by now that there was an incentive behind his happy demeanor; however, regardless of the of the motive, I was still thrilled to wake up to an energetic,happy, smiling, and joking William.  


Before I get into the fun and happy news about today’s events, let me just mention that during our clinic visit this afternoon, William did end up getting a blood and platelet transfusion along with a bolus of mixed goodies (k-phos etc.)  The dreaded Disease Assessment has apparently already been requested by the BMT team and to my surprise is scheduled to begin on the 25th. Please keep us in your prayers, we need God to bless William with maximum cancer death, minimum disease, strong lungs, strong heart and the continued strength off his personality!    Yes, I am a nervous wreck!  I am thankful that the assessment has been scheduled, but my scanxiety (scan anxiety) is now on full alert…Sigh…..


Let’s move on to happier thoughts, and granted wishes in which I admit I take some pride in knowing that I had a part in fulfilling.  As you know, William and I now live at the Ronald McDonald House. It is here, where we met a young guy by the name of Patrick. Patrick, has been diagnosed with a blood disorder called Aplastic Anemia. Aplastic anemia is a condition where the bone marrow does not produce sufficient new cells to replenish blood cells.  The only cure for severe cases of this disease is a bone marrow transplant from a matching donor. Unfortunately, Patrick’s transplant has been denied by his insurance and he has officially been removed from the Bone Marrow Transplant List.  Patrick is by himself, and without the support or guidance of parents, he has faced the daunting battle with the insurance company, a task that had emotionally and physically drained him.  Seeing

the look of defeat on Patrick’s face, I decided that the only way to help him was to give him a reason to fight. Patrick needed to be inspired by laughter, fun, kindness and adrenaline. I knew enough about Patrick to know that he adores all things related to auto racing sports, and this gave me a starting point.  A few days ago I placed some calls to a friend, and to my absolute delight I was successful in making contact with Samuel Hubinette, one of the best drivers in drifting, and a Hollywood stunt man. Sam is well known for the stunt driving  he as done in the following movies -Fast Five, Knight and Day, Fast and the Furious 4, Crank 2, and Fast and the Furious 3.
Today, Patrick, William and I, spent the day at the Irwindale Raceway where we had the great pleasure of meeting not only Samuel Hubinette, but also Mike Ryan, a fellow Hollywood stunt man with over 500 feature films, television shows and commercials to his credit.

Yes, today was about Patrick and his dreams and wishes but, the mommy in me encouraged William to participate too.  I am so incredibly proud of my son. I wish I could capture the pure joy and unrestricted curiosity he had about the cars and drifting. On several occasions I had to hide my tear filled eyes behind sunglasses, the joy of seeing my child happy, carefree, and feeling normal was an absolute blessing!  Today no one stared at his bold little head, and no one made any comments about how skinny he is.  Today William felt normal and that was the most important thing to him. William and Patrick both had the opportunity to go drifting with the pros. William went in the Freightliner Race Truck with Mike Ryan and Patrick went in the Dodge Challenger with Sam Hubinette. I can say with absolute certainty that both of the boys thought the experience was amazing, fun, and memorable. William described it as “Waaaaayyyyy cooler than any roller coaster because you don’t feel like puking afterwards” This is the video of William’s ride with Mike -

Sincere gratitude and appreciation to Samuel Hubinette and Mike Ryan for taking the time to make dreams come true! You guys ROCK!!

“I hope your dreams take you to the corners of your smiles, to the highest of your hopes, to the windows of your opportunities, and to the most special places your heart has ever known”. ~ Unknown

This is William's journey and we will Keep on Keepin on' and Live Strong with God in our hearts and courage in our souls.

Day 10 and the Essence of a Momcologist.

Today is day 10 of William’s most recent chemotherapy cycle. This is the day that if it were to be shown or

acted out on T.V,  it would have the ambience music of the Jaws soundtrack - you know the terror that awaits you, the beast that is stalking you, and you can sense that something is just not right.

Experiences and behavior patterns from the past 18 months have routinely revealed to us that today, day 10,  is the day that William’s body struggles and hurts from all chemo poison. Unfortunately, day 10 often ends with an admit into the hospital for fever, dehydration, pain, or infection. William woke up this morning with the familiar visual signs that there are battles raging within him. Dark circles under his eyes, bleeding gums, a persistent headache, nausea  and extreme bone pain (mostly jaw and femurs) all combine to make an unhappy little boy. Despite how crummy he feels, William has asked me to please hold off on calling the doctor, he is determined to get through this day without getting admitted.  He really does not want to go back into the hospital, can you blame him?  Since William does not have a fever, I have agreed to hold off on the phone call for a few hours. Frankly, as far as I am concerned, if he stays fever free and hydrated,  I will not instigate an emotional upset by making a phone call that results in and admit.  I honestly feel that he deserves some freedom from the hospital, and a sense of control in making a few of his own decisions regarding his own health ;) Needless to say, William will be under the scrutinizing watchful eye of a sometimes over zealous mother.

I received an email yesterday from a reader asking me to define what a “Momcologist” is. It occurred to me that sometimes I write the blog entries without consideration that not everyone has been privy to the lingo and terms often used in the “mommy oncology” world.  I will try to be more aware of the blog audience and define some of the more frequently used terms, starting with Momcologist. The following is description is from Momcologist.com, Writing from the trenches.

“Momcologist” – [mom-kol-uh-jist]

–noun

1. a mother who studies the branch of  medical science dealing with childhood cancer. Her degree is earned at the bedside of her child, in the middle of the night reading advanced medical journals, seeking out the latest study trials and thru the camaraderie of sharing with other momcologists.

A fellow Momcologist known to many as MindiTheMagnificent, an avid Childhood Cancer awareness advocate and member of the popular 46 Mommas Non Profit,  wrote the following about Momcologists in her blog. http://www.mindithemagnificent.com

“This odyssey that we are on never ends.  It is a life long experience that comes with fear, joy, expectation,  hope, loss, life, death, post traumatic stress syndrome, nightmares, exhaustion......... It is a life changing experience.  Some good, some horribly wretched.  We rally together, reading, writing, texting, facebooking our hearts out in an effort to find community and comfort.  That is why I am here, today.  Offering my heart.  To each one of us who are on this path.  We ache for things to be as they were before this beast entered our lives.  While being eternally grateful for those that are with us.  Holding our hands and our hearts, witnessing, as our new lives are crumbling, unfolding and being reborn.

I have an extreme distaste in my mouth when people use these three words:  Lesson, Gift, Reason.  Every person is on an upward path of growth.  That growth is possible without this experience.  There is no Lesson, Gift or Reason, worthy enough of what our families and children are put through.  We are put on a fast track of growth.  Racing along to keep up the lightning speed in which things happen.  Gasping for air as circumstances change in the blink of an eye.  The depth of our knowledge of our child's disease would keep any Oncologist on their toes.  From the moment the words are spoken, "Your child has cancer." we learn what perspective really is.  We have gained a new appreciation of the mundane and rudimentary things in our lives.  Moments we never gave a second thought to, are now sacred and crystalline in their value.  Some of our friends fade away. People we never truly considered friends, become steady rocks in our lives.  Our fellow Childhood Cancer families sometimes mean more to us than our blood relatives.

I would gladly revoke my membership to this club, if I could.  Yet, I am constantly humbled and filled with love for the members of this club.  We understand each others lingo, quirks, fears and joys.  Through CaringBridge, CarePages, Blogs, Facebook, Email, and phone calls, we cradle each other with the gentleness of a shared experience.  I look at You and you and you.  All of you, with the deepest understanding, the fiercest love and the proudest of honor.  We are family.  The kind that doesn't get fractured.  We will be life long friends and advocates.  My heart bursts with the love of knowing you.

I am a mom, wife, sister, caregiver, compadre, warrior, goddess, advocate, woman.  Above all else, I am a Momcologist. Fiercely at your side.  Holding your heart, knowing your hold mine”

This is William's journey and we will Keep on Keepin on' and Live Strong with God in our hearts and courage in our souls

Food for thought.

William and I have been at the Ronald McDonald House (RMH) for 2 days. Besides the expected loss of appetite, reduced energy levels and emotional sensitivity, William is doing okay. Due to neutropenia there is a need to limit William’s contact with the other families in the RHM; William is understanding about the restriction, but not happy about it. I would appreciate some ideas on how I can keep Sir. William entertainment while still abiding by all of the restrictions and rules.
  
In preparation for the Bone Marrow Transplant that will hopefully start in a 3-4 weeks, I  am slowly transitioning William into the low-bac diet.  A low-bacteria diet excludes foods that are most likely to contain bacteria or other infection-causing microorganisms. The BMT team at City of Hope has provided me with a 1 inch binder filled with rules, guidelines, tips and FYI’s regarding the diet. To give you an idea of what we are facing, I have listed a few of our new every-day nutrition rules.

•Food may not be prepared, warmed or cooked using a microwave or barbeque. All food must be prepared  on stove top, oven, deep fryer, double boiler, and/or toaster.
•Don’t drink well or spring water that has not been tested. RECOMMENDED that only purified bottled water be consumed.
•Before opening cans and bottles, wash the outside with soap and warm water.
•Avoid the following foods: aged or ripened cheeses such as blue, goat cheese, feta, or brie; eggs with cracked shells or eggs that are not cooked all the way; nuts or trail mix; pickled fish; raw eggs or homemade eggnog; raw fish, lox, or sushi; raw, rare, or undercooked meats and poultry; raw or fresh-ground peanut butter; tofu, tempeh, or other aged soy foods, such as miso.
•Select pasteurized milk, pasteurized yogurt, ice cream or frozen yogurt, pudding, or custard.
•Avoid raw or farm-fresh milk, raw yogurt, raw milk cheese, and raw milk ice cream. Avoid aged or ripened cheeses.
•Select the following foods, prepared and packaged: Bread, rolls, muffins, hot dog or hamburger buns; cooked rice or pasta; dry cereal; cooked cereal; mashed potatoes; baked potatoes; saltine crackers; graham crackers; popcorn; potato or corn chips.
•Select cooked vegetables, canned vegetables, canned vegetable juice, and canned tomato sauce or paste.
•Avoid raw vegetables; pickled vegetables such as olives, onions, pickles, or pickled cabbage; tossed salads with raw greens and vegetables; freshly squeezed vegetable juices.
•Select canned fruit or applesauce; canned fruit juice or nectar; peeled thick-skinned fruits such as bananas, oranges, grapefruits, and melons. Wash melons after peeling them.
•Avoid fresh fruits with thin and/or textured skins such as peaches, nectarines, plums, cantaloupe, pineapple etc. Avoid raw juices made from fresh fruits.
•Avoid desserts with coconut, raw fruits, raw nuts, and raw honey. Also, avoid constructed desserts. These are handled a lot when they’re made.
The  Ph Balanced, organic, sugar free diet that William was on is obviously something that has to be done away with. Unlike me, William is thrilled with the knowledge that he will once again be able to eat Chef Boyardee and Kraft Mac n Cheese. I must admit, there is some relieve in knowing that this will be a more affordable diet to go grocery shopping for.
For those that have not yet noticed it, there is a new page tab listed at the top  labeled September. September is Childhood Cancer Awareness Month so I encourage everyone to please take a look at the page and share the information with as many people as possible.

Eleanor Roosevelt said "You gain strength , courage and confidence by every experience in which you really stop to look fear in the face."  By definition of that statement, all MomCologists and DadCologists are super powered heroes, and it is in recognition of  that strength and courage that I wanted to share the poem below with everyone.

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable Shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them. 
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in the world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by
before they think of how much they hurt.
No woman deserves to wear these shoes.
Yet, because of the shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who's child was diagnosed with cancer.

This is William's journey and we will Keep on Keepin on' and Live Strong with God in our hearts and courage in our souls.

Weekend Update

This afternoon William received his first negative lab test results for c-diff YEAH! Finally, after an exhausting (and stinky) month filled with fevers, dangerous blood pressure, antibiotics, extreme weight loss, and thousands of sad tears, William's gut is stabilizing and healing. Getting rid of the c-diff means that we finally overcame one of the largest obstacles we faced in qualifying for the transplant...I cried happy,exhausted, and celebratory tears when we received the results...
Last night in the midst of a medicine induced sleepy haze,William got up to use the bathroom and collapsed/fainted/fell. Thankfully, in the few seconds it took me to reach him, his PCA (patient care assistant) walked in and was able to alert the doctor and tend to William. Luckily William did not get hurt and after a full exam and tests the doctor felt comfortable that there was no damage, or concussion, only a bruised hip. Chances are that the incident was brought on by William getting up and out of bed too fast causing his blood pressure to dramatically shift. Anyway, there is a small likelihood that William may have something called peripheral neuropathy. Peripheral Neuropathy is a side effect of Vincristine, one of the chemotherapy drugs that William has received a multitude of. My "mommy instinct" tells me that this is not the case so I am not worried - the doctor on other hand would like to do some more tests before he will make a determination.

Some more good news- we get to go home (Ronald McDonald House) tomorrow. Next week William will go through some tests for the Peripheral Neuropathy, and God willing, everything goes well and we will be able to return home to Randell by the end of the week. If we are fortunate and blessed with the opportunity to return home, We will be able to remain there until the time comes for us to return to City of Hope for the dreaded Disease Assessment tests and determinations. However, should something happen this week that will prevent us from returning to Randell, it will only be a temporary restriction. The doctor has assured us that he will allow us the much needed, wanted and deserved time to go home to Northern California before we start with the Disease Assessment.

Thank you everyone for your love, support, friendship and continues words of wisdom. We hope everyone enjoys the rest of their week! 

This is William's journey and we will Keep on Keepin on' and Live Strong with God in our hearts and courage in our souls.

Three Legged Dog–ramblings and thoughts of a momma.

 

A few months back I was watching a show on Animal Planet regarding a three-legged dog and the physical, emotional, and mental challenges she faced after losing a leg. Last night, in what I am sure was an Ambien induced sleep coma, I dreamt of the silly dog and her feats.

I woke up this morning realizing that I am that three legged dog, not literally of course.  The shock of William’s diagnoses is still (and forever will be) a raw fact that I deal with on a daily basis. A prognosis such as this is not something you simply accept, at least not for me, not yet. There have been the occasions that I’ve allowed myself the selfish self-pity moments to sit in the proverbial dark corner and lick my wounds. Through that gesture and accepting my emotions for what they were, I realized that similar to the dog, I was mourning the loss of the lifestyle we used to have. No longer able to participate what was once everyday family activities, the dog felt a sense of loss and grief. I was/am saddened by the loss of our once simple, casual, predictable and uncomplicated lifestyle. I was/am mourning the loss of my home, sleeping beside my Randell, and being a normal mommy with normal mommy problems.  

Rhema Butler, a DSRCT warrior that watches down on us from heaven, was the inspiration behind her mother, Kirsten’s, new web/blog site. I highly encourage everyone to take a box of Kleenex and spend a few minutes reading the entries. The honest, no hold back, in your face reality about Momcologists is written from self-experiences and factual information. –NOTE- Not recommended for the naïve!  http://www.momcologist.com/?page_id=28.  In a section of yesterday’s posting Kirsten wrote the following “One day while my daughter was in the middle of a long in-patient hospital stay I found myself really feeling a sense of loss and desire for those “old ways”, for MY house, for MY stability. I opened an email my mother sent me entitled “Where ever you are, BE there”. It was one of those quaint, wrap it all up in a pretty bow philosophy kind of emails. But something in it really struck a chord with me. A realization came over me that I was so intent on aching for how things “used to be” and longing for “my old life” that I was missing out on my present living. I was so overly attached to the concepts in my head and heart for how things “ought to be” that I was causing myself additional suffering. And even worse – EVEN WORSE – I was allowing those attachments to distract from what was right in front of my face: my daughter. I was missing out on enjoying her, visiting with her, loving her, experiencing what each moment was waiting to give to not only me, but to that daughter of mine. In that moment of realization I made a concentrated effort to let go of those attachments and enjoy what unfolded in each moment. It was a conscious decision and one I worked on many times throughout the weeks and months that followed” Kirsten did not write the post specifically for me; however, the words could not have come to me at any better time. For me there was a sense of comfort in knowing that the emotions and fears I face were the same as those of another mom and she was able to provide experience and eventual resolve to my grief.

Similar to the dog, I have now accepted the realization that our past lifestyle is in the past and it will never again be the same. In order for me get past this sadness, and get back to the responsibilities at hand,  I need to embrace the reality and somehow carve out a future filled with equal excitement, joy, laughter, dreams, love and family values. 

Adaptation is an amazing thing, the three-legged dog spent a few months mourning the loss of her old lifestyle but her sadness was replaced with the immense joy of her new favorite activities, skateboarding and water skiing.

Today is a better day; I am refusing to let it be anything else. William was placed in isolation so unfortunately we are a little restricted to what we can do but, I will still embrace each moment and experience without allowing myself to mourn for something that will never again be as it was.

Below are a few of the memories we have from the past 18 months and looking at them now I am reminded about how blessed we truly have been.

As always, this is William's journey and we will Keep on Keepin on' and Live Strong with God in our hearts and courage in our souls.

.

I want an Easy Button...

Remember the Staples adds with the "that was easy" slogan and the red Easy button? Today I wish I had one of those buttons. Most of the time our struggles and emotions are manageable, but today I don't have the strength to manage them, nor do I believe I would want to! I want an Easy Button. I want a little button that can be pushed so that my lil boy can once again be healthy and my heart didn't feel so heavy with a stew of emotions.

It's been more than two weeks since our last update and as you can imagine there is a lot to fill you in on. As you may recall from the last entry, William and I were to return home for two weeks and then return to LA this week to start the BMT. Staying true to it's MO, the cancer had different plans for us and quickly interfered with what ever expectations we had.

William and I were able to spend three fabulous days at home with Randell when out of no where William got a fever of 104.5. After an ice-cold bath, Tylenol and what felt like several hours of excruciating horror (watching your child being so sick is an experience that no parent should ever experience) William's fever dropped to a manageable degree and I was able to temporarily medicate the symptoms while we traveled back to LA. The road trip back to LA was an absolute nightmare filled with chills, vomiting, and diarrhea. Let's just say that I am thankful for the roll of paper towels and wet wipes that are permanently located my car.

Once we arrived back in LA, William got admitted and hooked up to all sorts of fluids,antibiotics, and supplemental nourishment.Turns out that my poor guy had food poisoning and to make things worse, the C-Diff had still not gone away....William and I spent a week in the hospital before finally being discharged and going home to our new medical residence at the Ronald McDonald House of Pasadena. Obviously the BMT (bone marrow transplant) got postponed. Our new roadmap and timeline for transplant was penciled in for September.

After spending a much needed quiet weekend at the Ronald McDonald House, William and I returned to the hospital yesterday for what was anticipated to be an "easy" chemo (something to keep the cancer at bay while we wait for transplant) what I was not anticipating was a nightmare conversation regarding whether or not William was still a candidate for transplant. After having a severe emotional breakdown in my car (in traffic on the 210) I was able to wrap my mind around everything that had been discussed. In two weeks William will go through a series of scans, tests, biopsies, and reviews, the process is known as disease assessment. William's assessment will be done to determine if #1- his tired and frail body will be able to survive the BMT and the extremely toxic chemo that accompanies it. #2- does he meet the criteria of minimal disease being present.

So here we are, back at City of Hope while William receives chemo. William is already is experiencing the horrid side effects of nausea and migraines ....sigh....................... What a horrible reality it is to know that for my child to survive this cancer, his body has to be poisoned to the point of unmentionable torment.

This is William's journey and we will Keep on Keepin on' and Live Strong with God in our hearts and courage in our soul!