Day +31

TGIF - in my last update I mentioned that we would be allowed to leave today, well once again that is not the case. Earlier this week William started suffering from strange abdominal discomfort, nausea, fevers, cramping and sensitivity to abdominal examinations. Long story short, the doctor ordered some blood tests and we were told that William had pancreatitis and a kidney infection. So, we will remain in the hospital for at least another week.

I am happy to report that even though he has faced so many challenges, disappointment, and strong treatment, William is dealing with it all like a champion! My lil man in so strong, stronger than me. William's stubborn, witty, tenacious and loving personality is back to normal and definitely keeping me and the nurses on our toes. :)

Yesterday, City Of Hope hosted it's 17th annual Halloween parade for all the oncology kids. I have to say that I was in awe at the amount of effort, team work, joy, and dedication that went into making this event such a huge success. For a couple of hours, the kids were rolled around the majority of City of Hope's campus in their wheel chairs(iv poles in tow) trick-or-treating around a constructed maze of executive level employees, board members, volunteers, nurses, administrative staff, Disney Channel celebrities, doctors, researches, medical students, interns and local politicians. Every single person was dressed in coatumes and enjoyed the event, laughter, endless candy, games, and jokes. Even with Williams fragile immune system, he was allowed to participate in the event and secure himself more than 4 kg of candy.

As you know we have started the process of re evaluating William's disease/cancer. Obviously we pray that all the tumors are dead- there is nothing that we would love more than for William to return to a lifestyle that does not involve doctors, hospitals, painful treatment, and icky medicine. We hope to receive at least a preliminary report by this afternoon....I will be sure to update the blog as soon as we know anything.

I sincerely hope and pray that Williams health will continue to improve, we are all eager to get out of the hospital but William definately deserves a break from all of this.

This is Williams journey and we will keep on keepin on, with God in our Hearts and His courage in our souls.

Day + 26

It's day +26 and we are still in the hospital which means that we have been for 36 day.....ARGH!

We were hoping to be released this past Friday, unfortunately William's BK virus took a turn for the worse and William started peeing blot clots. So, unfortunately our stay in the hospital got extended by 7-10 days. This entire week was consisted of treatment, anti-viral medications and a lot of hydration- all in an effort to heal the his bladder and permanently get rid of the stupid BK virus. By the time Friday came around, Williams bladder seemed to be healing and his overall health appeared to improving too. Yesterday I met with the transplant doctor and it was agreed that William's body showed evidence of healing and therefor the doctor felt comfortable with a forecasted discharge date of 10/29. Yeah!!!

Unfortunately, our smiles and excitement about the upcoming release was short lived. Last night William spiked an extremely high fever, started urinating blood and blood clots, and to battled constant tummy problems and nausea. Needless to say, the sudden change in his health is concerning and a lot of tests/analysis are being done to determine the primary cause to all of this. The doctor suspects that the BK Virus lead to a possible kidney infection...but that is just speculation and I won't have a definite answer for a few more hours. The only thing we really know for sure is that our stay in the hospital has once again been extended 7-10 days......

Thank you for your continued love and support

Day + 20

We have been in the hospital for 30 days and I think it's safe to say that we are ready to get out of here!

I am happy to report that williams mouth is healing well, and so is the rest of his body :) Engraftment occurred around day + 11 and although the cell and marrow production has been excuciatingly slow, I am thankful for every little bit of progress!

Our goal for the week is for William to remain fever free, eat a minimum of 500 calories a day, drink 1500ml of water a day, and to get some daily exercise/walks. If we can meet all the goals, we will be discharged of Friday. Once we are released, we will move into bungalows located on the hospital grounds(Hope Village) The benefit of staying in the medical housing is the availability of urgent care nurses, and immediate access to transfusion clinic. We will be living at the Hope Village for the 4-6 weeks.

Our first post-transplant scan is scheduled for next week. The data from this scan will be used to determine if any further treatment(radiation etc) will be needed to combat any remaining cancer cells. Obviously we pray that the scan shows NED (no evidence of disease)

For the past several days We have been fortunate to have Randell with us, having the family together is such a great thing!

A huge thank you to everyone that has been sending letters and cards!Williams wall is postered with all the mail he has received:)

This is William's journey and we will keep on keepin' on with God in our hearts and courage in our souls!

Day + 10

This is a picture of what William's mouth/throat and digestrive tract looks like.

As you can tell, the blisters are huge.

Today is day +10 and we were hoping that William's body would start to show some sign of engraftement; however, this is not the case and we were told that William's immune system is actually getting less and less. To assist his body with the extreme immune deficiency that he is currently facing, the doctor has placed him on a drug called IVIG. Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is mainly used as treatment immune deficiencies such as X-linked agammaglobulinemia, hypogammaglobulinemia (primary immune deficiencies), and acquired compromised immunity conditions (secondary immune deficiencies) featuring low antibody levels.

A huge thank you to everyone that has been sending letters and cards! I cannot tel you how happy William get's each time he receives mail ;) The emotional boost that he gets from receiving your correspondence is HUGE! Thank you, thank you, thank you!

This is William's journey, and we will keep on keepin' on with God in our hearts and courage in our soul.

Day +9

We were warned. We were told to expect the worse. We were given literature on all the side effects that William would experience from the transplant conditioning. Yet, I don't think I was emotionally prepared to see William go through so much hurt, sickness and emotional turmoil.

William is still battling extreme mouth/throat sores. The pain is at a point where he is no longer able to swallow his own spit and has had to result to drooling into a bowl. The doctors keep telling us that it will get better, and yet it seems to get worse.

Our latest challenge is the extremely bloody stool/poop. Due to the mucositis (blisters and sores from chemo) in the digestive tract and the C Diff, it looks like the blood is from Williams digestive lining (raw and bleeding).

Tomorrow is day +10, and this is normally the estimated time for us to start seeing some sort of cell growth wich means that engraftment is occuring and his body is on its way towards recovery. To learn more about engraftment please click here

In the meantime, we would appreciate it if everyone please continues to keep William in their prayers. I also have a special prayer request for our buddy William Murdock. William M. was diagnosed with Neuroblastoma around the same time that my William was diagnosed with DSRCT. Our families spent a lot of time together at Sutter Hospital and the boys developed a special friendship. William M.'s treatment involved a bone marrow transplant, 12 hour surgery, a lot of radiation, isolation in a lead room, test trials and extended hospital stays away from his 5 brothers. William M. fought an extremely brave battle and beat the cancer! Last week he had his central line (broviac) removed and spent a few days at Disneyland with his family. Unfortunately, 3 days into the Disneyland adventure, William suddently started complaining about chest pains and a sore ankle....long story short, his cancer has returned.
Julie, William M.'s mom keeps a blog of William M's battle, please feel free to read the blog and leave the family with words of encouragement!. http://ittakesvillages.blogspot.com/2011/10/choosing-hope.html

This is William's journey and we will keep on keepin' on with God in our hearts and courage in our souls

Day +2

Thank you to everyone that has been writing to William and sending cards.
William is really struggling with the expected side effects from chemo, the worst of which is the blisters in his throat.

Unfortunately, William has also been struggling with severely high fevers of 40+ C/ 104+f. To complicate things a little further, c-diff has once again returned and this causes tummy cramping and discomfort.

I am so thankful for this medical team. Everyone here here has been absolutely wonderful and even through the latest hours of the night, in William's worst condition, the on-call doctor has been a constant kind support to us. The nurses, social workers, volunteers, child life team, teachers, phsycologists and doctors are AMAZING and I am truly grateful to all of them for all the compassion and love that we have received!

William is spending most of his time in a narcotic induced sleep, and although I don't like seeing him like this, I know that this is the most comfortable thing for him.

This is Wiliam's journey and we will keep on keepin' on with God in our Hearts and courage in our souls

Transplant

Stem Cells Arrive             Taken from Cryogenic Holder        Gently Defrosted

Stem Cells Prepped                  Patient ID checked twice            Nurse starts infusion

Stem Cells are infused             Feeling the side effect of the cryogenic preservatives used.

Cryogenic tech stands guard.    Nurse stands guard.                Vitals are taken every 6 min.

William being peaceful!

Day 0

Wow, we made it – Day 0! I cannot find the words to express how emotional I am today. My heart is filled with relieve, joy, happiness, love, faith, and perhaps most importantly – HOPE.

On Friday night William finished up with his last infusion of Busulfan and Topotecan. As you can tell by the wonderful goofy smile on William’s face in the photo, he was still coping well with the side effects. Actually, up to this point he was still eating and even managed to spend a couple of hours with the other transplant kids in the play room.

On Saturday, the dreaded Melphalan chemo was administered and even though William consumed plenty of popsicles and ice chips prior to receiving the chemo (minimizes blood flow in mouth tissue thus minimizing the blisters and sores) he was in absolute pain within a few hours of receiving this horrid chemo.

Yesterday, after the second day of receiving Melphalan, William not only struggled with the Mucositis (ulcers in mouth, digestive track and throat) but also diarrhea, constant vomiting, painful hiccups, and migraines. - - Sigh - -

Due to pain related to the act of swallowing, William is no longer eating and a IV nutrition is being given 18 hours a day. William has also been given a ‘Happy Button’ that allows him to infuse pain medicine at his leisure and need by simply pressing a little button. 

To assist with pain management and decrease the Mucositis related inflammation in William’s throat, he receives 3 daily inhaler treatments of Decadron (steroids) William’s nausea levels are the worst I have ever seen, and he is currently being given Reglan, Benedryl, Merinol, Kytril, Scopolomine (patch stuck behind the ear) and a Promethazine. Unfortunately, none of these are 100% effective and William still struggles with near constant vomiting.

So, here we are on the morning of Day 0 and just a few hours away from the transplant!  Just like June 22, 2002, today will forever be seen and celebrated as William’s birthday. Today, William will be given the miracle and gift of live. 

Please keep us in your thoughts and prayers today!

I will update the blog again tomorrow.

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 -4

 

It is the morning of day –4 and William is doing exceptionally well. In fact, up until this morning he has had zero side effects and life has been surprisingly normal (well, as normal as can be expected). As I mentioned, William did wake up this morning feeling a little icky, but his feisty personality is still present, and that is a good thing.  

So far our days have been filled with tutoring, paper airplane folding, DS 3D games, WII, reading, and lots of Uno. Keeping William’s mind and body occupied has been a little more challenging than I initially anticipated but, I am sure that next week’s arrival of Grandma  will alleviate some of the boredom.

Thank you for checking in on William – Please remember to keep sending William your letters and words of encouragement!

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 through -7 and a weekend we will never forget!

This past weekend, we were invited to Reno to attend the Air Races and also, see one of William’s favorite bands, Maroon 5,  in concert. 

On Friday afternoon, we went to the Reno Air Races and spent a wonderful afternoon watching William’s favorite airplanes participate in stunt displays and races. Unfortunately, the afternoon ended in horror when a P51 Mustang crashed into the VIP seats killing and seriously injuring a lot of people. God was watching over us that day because a few minutes before the accident happened, William suddenly felt sick and asked to go home. Within a few minutes of us leaving our viewing location in the Pit crew area, the plane impacted the location where we were standing.  What we saw and experienced directly after the accident can only be explained as surreal horror…Randell and I did our best to shield William from some the crowd reactions but I don't think it will be an event that will ever be forgotten.

On Friday night, we attended the Maroon 5 concert and thanks to a friend with special connections, we were able to go backstage and meet the band. William was able to hangout with the guys, exchange some jokes, get some autographs and photos. I must say, that the guys from Maroon 5 are extremely, extremely nice, humble, and down to earth!.  The entire band signed a table cloth (from the table were William was sitting and chatting with them) We also had some photos taken by the band photographer (I will publish those once they are sent to me).  Unfortunately, the events from the air race earlier in the day, was still occupying William’s thoughts so we did not stay for the entire concert. Instead, we decided to return to the hotel and allow William some much needed relaxation and fun in the kids arcade. 
The video is from the Reno concert, if you listen carefully, you will hear Adam dedicating a song to William.

Maroon 5 "Never Gonna Leave This Bed" HD Live Reno
- YouTube

On Sunday, after a tearful goodbye to Randell and the dogs, William and I returned to LA. At 5pm we checked into the hospital and by 8pm his pre-chemo drugs were given. 
I am happy to report that we are now on the 3rd day of chemotherapy and William is doing exceptionally well. In fact, he is doing so well that the doctors decided to up his chemotherapy dose and administer a stronger formula. 
As we settle into our room and prepare for the next 4-6 weeks of treatment, we would like to remind everyone that William loves receiving mail! Reading everyone’s cards and letters gives William tremendous joy, so please keep sending them!  Our mailing address is listed below.
For those of you that are local – Yes, you are welcome to visit BUT – you have to be absolutely healthy (no running noses or coughs), please remember to scrub down and sterilize before entering our room, and YOU MUST TEXT, OR CALL ME FIRST. Also, if you have had any kind of immunization or vaccine – PLEASE DO NOT VISIT!
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

• City of Hope – Helford Hospital
• 3rd Floor Pediatrics
• Patient: William Klopper
• 1500 East Duarte Road
  Duarte, California 91010

…13,12,11,10,9,8,7,6,5,4,3,2,1 TRANSPLANT!

 

My apologies for not updating sooner. William and I are at home, enjoying some much needed ‘normality’. William’s transplant was originally supposed to happen on the 11th, but thankfully the transplant team agreed to our request to postpone the procedure by 7 days. Yes, the postponement was a good thing. On September 10th, Randell, William, and I attended the Capital Air Show, and as you can imagine William had an absolute blast! I am so happy that William was able to attend. As you already know, William is a huge fan of all WWII aircraft, so it was an absolute delight when  we realized that the airshow hosted a special Pearl Harbor bombing reenactment. Seeing the Japanese Zero Bombers flying in formations, and experiencing the smells, sights, and sounds of ‘bombs’  (pyrotechnic special effects) made William an extremely happy boy with a big goofy smile.

The transplant process is scheduled to start on Sunday the 18th. Transplant day will be +10 days after William gets admitted. This is our anticipated calendar:

9/18	Day -9	Admit. Start anti seizure medication, Dilantin
9/19	Day -8	High Dose Chemo. Busulfan for 6 hours & Topotecan continuous
9/20	Day -7	High Dose Chemo. Busulfan for 6 hours & Topotecan continuous
9/21	Day -6	High Dose Chemo. Busulfan for 6 hours & Topotecan continuous
9/22	Day -5	High Dose Chemo. Busulfan for 6 hours & Topotecan continuous
9/23	Day -4	High Dose Chemo. Busulfan for 6 hours & Topotecan continuous
9/25	Day -3	High Dose Chemo. Melphalan
9/26	Day -2	High Dose Chemo. Melphalan
9/27	Day -1	Rest
9/28	Day 0	TRANSPLANT
9/29-10/1	Day +1 through +4	Rest
10/2-10/6	Day +5 though +10	G-CSF injections
10/11	Day +15	engraftment anticipated.

There is equal excitement and anxiety in my heart about the upcoming transplant. I am extremely happy that this process is finally happening but, at the same time I am nervous about all the anticipated side effects. The side effect that has caused me the most tears, sadness and anger, is William’s infertility. It saddens me to realize that William will never be able to father a child of his own. Cancer has stolen so much from William already, why does it need to steal the future life of his children?  Yes, I realize that in the grand scheme of things, William’s infertility is a small price  to pay for his survival and living a cancer free live.  I need to remember to focus on the positive.

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

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