thecookiegal

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Going GOLD for September!

Next month the streetlights in my city of Woburn will most likely turn Pink again for Breast Cancer Awareness.  You will hear a lot about “saving the “tata’s”  It will be an important time for woman across the country and a way to raise money and awareness.  But, before October, comes September.  And it has been designated by many as Childhood Cancer Awareness Month.

Prior to March 8, 2010, my “awareness” of childhood cancer was:

  1. Going to the Jimmy Fund Scooper Bowl every year and eating a lot of ice cream
  2. Watching St. Jude Commercials and feeling really bad for those kids.
  3. Knowing that several kids in Woburn got cancer it in the 70’s, but that it was on the “other side” of town, and didn’t really effect me.

Outside of that, my awareness and knowledge was limited, and I kind of just looked at it as “something that you hear about in books and TV movie of the weeks”

However on that dreadful March day, childhood cancer entered my world.  I sat in the ER at Tufts Medical Center in Boston with my husband and my Aunt, and heard the doctor say “I am sorry, but we found a mass in you sons abdomen”.  The mass was Neuroblastoma, a rare form of cancer – only about 600 children a year are diagnosed with it.  My world as I knew it changed forever that day.  My son Alexander was only 8 months old at the time.  Over the next 13 months he would endure chemotherapy, blood and platelet transfusions, IV nutrition and 12 surgery’s.   He also had a Bone Marrow Transplant using his own stem cells. He spent 247 days as an inpatient at Floating Hospital for Children.  He spent many other days as an outpatient, and had a nurse visit him at home on most other days.   On March 31, 2011 he had a surgery that lasted 16 hours to remove more of his tumor.   His little heart could not take it and he took his last breath on April 1, 2011 at 12:40pm  while in the arms of mommy and daddy.  He was just 21 months old.

Here are some facts about Childhood Cancer (http://www.nballiance.org/facts/)

  • Childhood cancer is the number one disease killer in children.
  • Nearly 70% of those children first diagnosed with Neuroblastoma (what my son had) have disease that has already metastasized or spread to other parts of the body. When disease has spread at diagnosis and a child is over the age of 2, there is less than a 30% chance of survival.
  • Cancer kills more children than any other disease, more than Asthma, Cystic Fibrosis, Diabetes and Pediatric AIDS combined.
  • Sadly, over 2,300 children with cancer die each year – and average of 7 a DAY
  • Every school day 46 children are diagnosed.
  • 1 in 330 children will have the disease by age 20.
  • Currently there are between 30,000 – 40,000 children undergoing cancer treatment in the U.S.
  • 80% of children have metastasized cancer at the time of their diagnosis. At diagnosis, only   20% of adults with cancer show evidence that the disease has spread or metastasized.
  • Cancer symptoms in children – fever, swollen glands, anemia, bruises and infection – are     often  suspected to be, and at the early stages are treated as, other childhood illnesses.
  • The National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
  • The American Cancer spends less than 70 cents of each 100 dollars raised on childhood cancer.

As you can see there is a HUGE need for help in the world of Pediatric Cancer.  The funding is very limited.  Many of the treatments for childhood cancer have not been changed in over 20 years!

You maybe wondering – “What can I do?”  “How can I make a difference?”

Here are just a few ways you can help:

My son was treated at Floating Hospital for Children.  I can not say enough about how wonderful they were.  One wonderful part of the team was the  Child Life Specialists.  These are people that help the children through the difficult days through play, crafts, and other activities.  They are also there to give parents a much needed break.   The toys and things they give the children are mostly from generous donors.  Perhaps your school could hold a drive for these? Many people think of Christmas as a time to donate, but they need items all year long!  Toys, Crafts, FUN Twin Sized Sheets (for the long stays in the hospital), even Glad “Press and Seal” (to cover IV lines during baths).   You can check with the hospital to see what is needed most – they would be happy to guide you.

http://www.floatinghospital.org/OurServices/HematologyOncology/PatientFamilyResources/SupportServices

You can check your local Children’s hospital to see what they might need.

Can you Sew?  There is a wonderful group called ConKerr Cancer.  This group makes Pillowcases for Children in Hospitals.   My son spent 247 days in the hospital.  It can get very bleak at times.  A little bit of color adds a LOT to the room!  Here is their site where you can learn how to make the pillowcases and to find out where you can drop them off

Make Some Noise!!   Make Some Noise 4 Kids  was started by a 12 year old boy who was fighting Ewing’s Sarcoma.  He wanted to doing something to help other kids that were fighting like him.  You can help his foundation in many different ways.    They also have an Angel Quilt that is traveling the country.  My son Alexander is on this quilt.  It is filled with children whose lives were lost to cancer.

Summer is almost over, but there is still time to have a lemonade stand!  Alex’s Lemonade Stand Foundation was founded by a 4 year old girl that was battling Neuroblastoma.  Sadly, she lost her fight, but her family kept the Lemonade stands going!  Since that time they have raised over $55 MILLION Dollars which has gone to research for childhood cancer and family support

Make some Cookies!  Cookies for Kids Cancer encourages Bake Sales to help raise money for Pediatric Research.  Since their foundation they have raised over $4 MILLION Dollars.  They also offer a patch for Scouts (boys and girls) that help them with fundraising.

Shave your head!  If you don’t mind giving up your hair for a while (after all it WILL grow back!) Consider finding a St. Baldrick’s Fundraiser! They raise funds for pediatric cancer research.

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A very emotional day

Today is Alexander’s Birthday.  He would have been three years old.   We brought Birthday Balloons to his grave today and blew bubbles.  It is so wrong.  He should be having a birthday party with his friends and family.  Not us bringing balloons to his grave site.

Today, our beautiful new daughter Julia is 1 week old.  When I look at her I see this beautiful new life before me.  I have so many hopes and dreams for her.  I look forward to her learning new things every day.  She is already such a joy in our lives.

It has been a sad and joyful day all at once.

The other day, I was holding Julia and talking to Richard and missing Alexander so much! I was feeling so sad that she will never know him! Of course we will tell her about him, but it just isn’t the same.  She will never get to meet him in person, play with him, laugh with him, have him pick on her as only big brothers can.  She won’t have him to protect her from the “bad boys” that will want to date her when she grows up.

Before we went to the hospital, I made sure my Doctor had it in the chart that we had lost Alexander.  When we arrived, I had Richard speak to the nurse.  I knew there would be certain things they may have needed to ask from a medical point of view.  But I wanted to avoid people asking “is this your first? Is your son coming in to see the baby?”  For the most part it was okay.  One nurse did ask, because she hadn’t gotten it in report or read it on the paper or something.  She did apologize later for not being aware.  I actually talked a lot about Alexander – more than I thought I would have, but it was very nice too.

We had the hospital photos done.  The photographer made a video of the pictures.  There is one quote that said something about measuring memories in MOMENTS.  We had so many moments with Alexander – but yet so few.  We will not build anymore memories of Alexander.  He will be forever 21 months old.  He will not grow up. He is our baby forever.

Normally, I am fine when I see my friends with kids.  But another friend had a baby recently and posted a picture of her older child holding the new baby on his lap.  I was very sad to know that we were never going to have a picture of Alexander holding his little sister on a pillow in the hospital.  We have a picture of me holding Julia and she was touching my picture charm of Alexander.  It makes me so sad to know that is all we will ever have of her with Alexander.

Julia will always have a ‘big brother” but yet, if we have more children, she will be the oldest. It will be a strange thing for her as she gets older when people ask how many siblings she has.  I am sure she will find her own way to talk about Alexander and we will help her with that when the time comes.

When we were at Camp Sunshine, I talked to other people who had lost a child and gone on to have others.  However, I haven’t really had an opportunity to talk to those that have lost their first and only child and gone on to have another.  Every loss is hard, but this is just seems to be so very different.

I am lost as to what to do with all of Alexander’s pictures.  We have so many of them around the house.  I know if he was alive, I would still have them, but I am sure I would have removed some of the family photos that had just HIM in them, to make room for the new family photos with Julia in them.  My caller id photos and wall paper on my cell phone are of him.  If he were alive, I would take them down to put ones of him and Julia on them. Now, if I take them off, I feel like I am “replacing” him with Julia, but it is not possible to have them both on there in the same picture.

When I think about JUST Alexander, I am fine.  I miss him, and love him, but I can remember all the wonderful smiles and love that he gave us.

When I think about JUST Julia, I am also fine.  I look towards the future and all the wonderful times we will have with her.

It is when I think about the two of them at the same time, that I get the saddest.  They will have no pictures together, no memories made together.  Julia will never truly KNOW her brother no matter how many stories we tell her or pictures and videos we share.

We are once again entering into a new phase of our lives.  One that will have the joys of a new child, along with the sadness again over the loss of Alexander. It is not an easy journey we are on.  Our lives will never be the same.  We will continue to take it one day – sometimes one HOUR at a time to make it through.

 

 

 

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1 Year Later from Mommy’s View

One Year.  One very LONG year.  Tomorrow, April 1st, it will be 1 year since  our beautiful Alexander took his last breath as we held him in our arms.    Just hours earlier we had such hope.  He had made it through the 16 hour surgery, they had removed a large amount of the tumor.  We had hopes of more treatments, him getting well, growing up and being a “normal” little boy.  Only a few hours after his return from the OR, he started to decline.  They tried in many different ways to save him.   They tried so very hard.  We were in the room for most of it, so we could hear them working on Alexander doing everything in their powers to help him.   But it soon became clear to us, that there was no hope for any kind of recovery.   We made the decision to turn off the machine that was helping him breath and to hold him in our arms one last time.  We said his good night prayers with him one last time, blew bubbles for him, and he went to Heaven.  Both Nana and Oma were there.  They took turns holding him, saying their goodbyes.

It was strange for us not to be at “Our” hospital.  We didn’t know these doctors and nurses, and they didn’t know us.  However, they were still wonderful.  They gave us all the time we needed.  There was no rush to leave him.  They brought us a memory box, and some paper to make hand and foot prints of him which we did.  We spent some time with him, and then decided it was time to say goodbye and leave him.  That was one of the hardest things I ever had to do.  I left a picture of our little family with him.

It was so very strange to be leaving the hospital without him.  When Richard pulled up the car, he had a bit of a smile on his face.  I asked him what was up.  Earlier in the week, he had lost a book.  The lady that was taking the money for the garage was reading HIS book (he figured he must have left it at the counter earlier in the week).  It was from a series of “The Nobel Dead”.  He said “I think Alexander helped me to find this book”

The next days that followed were really a blur.  We did what we had to do to plan the funeral.  How do you plan a funeral for a child?  How do you talk about someone that only had lived for 21 months?  We did manage to do it, and I think we did a very good job.  In his short little life, Alexander touched many lives.  The doctors, nurses, other staff, and all that followed his Carepage.  Through his Carepage, I have even met some other neruoblastoma families, that some how came across my page!  I now follow their journeys. Sadly though, many of them have also had to say goodbye to their beautiful children.

The day of the funeral, we were saying our final goodbyes to him.  We asked them to help us open up the bottom of the casket, so that we could put his special socks that Oma had made for him on, and put a few more things in the casket with him.   We got a little laugh from this.  We knew this casket could only be shown open “half way”.  Well, the reason for that is because the other side of the casket is PINK!  So Alexander is in touch with his feminine side for all eternity!   They had also left on his name band from the hospital.  We wondered if that was perhaps, so they could “scan” it when he arrived in Heaven and make sure he was who he said he was?  A little bit of laughter on this very sad day.

The Funeral itself was a bit of a blur.  We did think to have someone record it, so we have that to go back to and listen. The music done by one of my friends was just beautiful, and the sermon by my good friend Fr. Paul, was wonderful as well.   At the cemetery, we were told there was about 110 people there!  We handed out bubbles for everyone to blow.  I wish we had thought to ask someone to take a video or picture of that!  Since we were in the front, we didn’t get to really experience it all, but I was told it was beautiful with the thousands of bubbles being sent up to heaven for Alexander to pop!  We had a wonderful reception afterwards, with so many friends and families.  But, as the day wore on, all I wanted to do was to go home and go to bed and sleep forever.

The next days and weeks ahead were very difficult for us.  Richard went back to work, but I had nothing.  Nothing but a silent house to sit and cry in.

Both Mothers Day and Fathers Day came and went without much fanfare.  Last year we were in the Hospital for both days.  This year it was very hard to “feel” like a parent when your child is in Heaven.

In July, We had a wonderful vacation to California – Alexander was with us in many ways during that trip. (see post from October) https://thecookiegal.wordpress.com/2011/10/01/dear-alexander/

When we came back from California, I decided to go back to work. I stayed at one job for a couple of months, then moved on to another one.  It was soon after I started that job that I found out I was pregnant again!  We had trouble getting pregnant with Alexander and even needed some “help” from modern medicine.  We never thought I would get pregnant as quickly as I did! But, yet, there I was pregnant with a new job.  And then the nausea and morning sickness started!  I was working as a visiting nurse – driving around all day, going in and out of peoples homes was not easy with the nausea!  I also realized I just didn’t like the job, so I gave my notice.  I needed to focus on being pregnant for a while, and just “be”.   I am also not sure if I even WANT to be a nurse any more.  But, yet, I don’t know what I want to do with my life.  Part of me would like to be a parent advocate of some kind, but part of me wants to run far far away from anything in the medical field.

Expecting this new baby has been both exciting and scary.  Scary, because what if this child has cancer too??  I am sure we will always worry about that.   Although, I have been recently saying, either we will freak out at every little sniffle and cough, or go the opposite direction!  I can see us sitting in the ER with the kid having a broken arm or something, and being so calm, that the staff wants to call DSS because we are just TOO calm for the situation!    We will be using the same room Alexander had for the new baby.  We only have one other room in the house, and it would be a lot of work to switch everything around!  Plus, that room has trees painted on the way, and is just perfect for a child.  We have started to go through some of the things in the room.  It wasn’t too hard really.  One thing I am not looking forward too is taking down the “Alexander John’s Room” from his door.   That is going to be difficult.  But, I will take a picture of it and put it in our memory box with many other things.

A word that came up recently in one of my support groups was “cheated”.  I feel “cheated” out of a long life with Alexander.  I feel cheated, that he never walked or talked, or even really ATE.  He never said Mommy and Daddy, I never got to chase him around the house, there are so many things he never got to do.  I was recently reading another blog, and the topic was “Blessed vs. Lucky”, with the focus being on “Blessed”  I wrote a reply, and said how I disagreed with the topic.  Alexander was very UNLUCKY!  He got on of the deadliest kinds of childhood cancer, and despite being the “right” age, he never reached remission and he died.  Many of his friends have beaten their cancer, and lived.  They are very lucky.  Can I say they are blessed?  If so, does that mean Alexander and all the other children that die from their cancer are NOT blessed?

One person wrote a reply to my response, and put a different twist on it.  He suggested, that I look at the time we DID have with Alexander as a Blessing.  Even though he was sick, and did die, we were BLESSED to have him for 21 months (this person lost his daughter at 28 DAYS old)   When I looked at it from this perspective, I felt a lot better.  While, I will miss all the things I will never get to do with Alexander, I am very grateful for all that we DID have with him.  Even though he spent more time IN the hospital than OUT of the hospital, many of his days were filled with laughter and smiles.   He was such a trooper during his treatments.  There were things he did not like, but they X-ray department was always very impressed by how well he did.  There were times when he had to sit on a little block and we had to hold his hands in the air so they could get an x-ray. He usually did not cry, or fight us, he just did want he had to do.  He was a wonderful boy.  For the most part he let the nurses do what they needed to do to take care of him.  EXCEPT for his blood pressure!!!  He would always move just when they were ABOUT to hear it!  He also did not like having his temperature taken under his arm – you would think they were sticking him with a needle sometimes the way he fussed!  It was kind of humorous really.

So, yes, while I do feel cheated in many ways, I know how blessed and lucky we were to have such a wonderful boy in our lives!  He was the happiest kid I knew despite all that he went through!  We enjoyed every day and every moment we had with our boy.  Even though so much of that time was spent IN the hospital, we still found a way to make it special.  We took him on Wagon Rides, blew him bubbles, made him smile.   We tried to treat him like a “normal” boy, which is hard to do when you are covering him up with plastic wrap just to take a bath!  But, we did our best.   He rolled with the punches. Some times, he would be throwing up one minute then reaching for his toys the next!  He was always making us smile and laugh too.

Some times I do wish I held him for one more moment – but would one moment be enough?  I don’t think so – I couldn’t hold him forever, I had to let him go. But really, I do not regret one moment we had one with him, even though all the yucky times.   If God had said to me, I am going to give you a child, but take him back to me 21 months later, I would have still said YES, send him to me!! He was a wonderful son, and I am glad that we had him in our lives for those 21 months.   He was a joy to those he encountered, and I hope and pray that people will remember him, and bring the joy that he had to others.

So, tomorrow, please remember the JOY – remember the Oreos, the Popcorn, the BUBBLES!   Send him up some Bubbles today, and any day you want to bring joy to the world.  Keep the bubbles in your car – blow them out the window when you are in traffic or at a red light.  Watch the reactions, the smiles, you are getting, and know you are spread the love of Alexander.

First Oreo Cookie


All Done!

Birthday Oreo

Why Eat Cake when I can have a Yummy Oreoe?

Sorry, this is MY Oreo!!! None for you!

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1 Year Later from Daddy’s View

Coming up to the first anniversary of Alexander’s death, I have been thinking. People grieve differently.   Nancy and I had a conversation about what was going on with our grief.  Here is how I feel and Nancy will add her side of the story later interspersed though this blog.

I am a rational person and not a very emotional outwardly.  I see Alexander’s passing though my “rose colored glasses” differently that Nancy.    There are the five stages of grief which I seem to have passed thought with very little problem.

Bargaining. I never really bargained during Alexander’s illness.  I did not promise anything that I could not deliver. I did not ask God to heal my son and promise to be a better person. I just hoped that all would work out. When Alexander was dying I did not ask for one more day.  I just accepted the sad truth about what was happening.  I look at the other children who had to go through a long drawn out process before they passed away. Would I have survived a long drawn out process of Alexander dying? Would I have to grasp for straws and hope that all would have turned out okay? I don’t know. I know that the decision to turn of the respirator that was helping Alexander live was very hard.  I did not want to let him go but it was the right thing to do at the time.

Nancy and I had a conversation during Alexander’s cancer treatment about if Alexander were to die. How we would want it to happen.  Not that we thought it would every get to that point.  We both agreed that it would be best for him to die in our arms at home in his room. He got part of the wish he did die in our arms with family around us. This did not make it any less heart wrenching or sad.

Denial.  I have no denial issues.  I was there when he passed away.  Nancy and I held him in our arms. We had a funeral and buried him. I cried when I read the passage that I though would be appropriate to put on the back of his remembrance card.  I can’t deny any of these things.

Anger.   I am not anger at Alexander’s dying. Alexander did nothing wrong.  He was a great baby. He smile and laughed, played, enjoyed being read to and trying to catch bubble.  It was not his fault that he got cancer.  I am not angry at the doctors for not curing him.  I believe that all of the doctors did everything in their power and knowledge to treat Alexander.   I am not angry at myself for any of the decisions that were made.   The treatment protocols were designed by doctors with their knowledge of how treatment is supposed to follow.  Nancy and I followed what the doctors said.  Nancy has said that she feels “cheated”, while I feel “graced” to have been part of his life. My grace is looking to the past and Nancy’s cheated is looking forward a future that will never be. Is it wrong not feels angry about a future that will never be? Since I can’t deny what happened why worry or feel upset or angry about something that has not happened. I feel that anger needs to be focused on something. When I do get angry I am more upset that our new child will get sick like Alexander did and why would I have to go thought this again. But even this thought is quickly put out of my thoughts because we are not there yet.

Nancy gets upset when people say or do stupid things (eg. “God has plans,” or “at least he is not in any pain.” Or “are you going to have more children?”) I let all of these comments just roll off my back and let them go. I have no idea if I am doing God’s plan for me. I am living my life for me.

Acceptance.  I have accepted that fact that Alexander is not with us any more.  I am saddened by this realization. I have accepted the fact that I will not be able to create more memories with Alexander.  I either don’t know how mourn a future that will never happen. Like seeing Alexander walk or talk, taking him apple picking, going to school, or any of a thousand of other things that we may have done together. This type of acceptance does not mean that I don not get sad when I think about Alexander. I just means I know he is gone from my life and all of the people that he effected.

Getting up out of bed every morning.                                                                            Some times wonder if I care. How can it be so easy to get up and do things every day. I lost one of the most important parts of my life last April first. I get up and start the daily activities.  On Monday this includes doing the laundry, taking out the trash, cleaning the floors, and other little things around the house. I sit and play my silly face book games all the time. I get up and I walk around the block without Alexander. I go food shopping with Nancy but without Alexander. Last week with the perfect weather, I worked on my garden and cleaning up the outside of my house without Alexander. Is that living? Do these things make me happy? Or are they just fillers in my life to take up the space where Alexander should be?

Nancy gets up set at me for getting up.  “don’t you understand how hard it is to get up out of bed,” she says, “ I would not get up if I did not have to go to the bathroom or eat something.” “Why don’t you just stay in bed?” she questions me.  I just can’t stay in bed and feel sad. I need to have the house clean in order to stay sane. I don’t want to be depressed. I have been down that road once and don’t want to go back there.

It has been said that men can compartmentalize life very easily. Whether it be work, home, play, or any other thing. Have I done this with Alexander? Or Nancy? Or my Family? Or other people in my life.   I look around the house and see all of the pictures of Alexander. Am I really seeing them or just glancing over them.  I can make my self sad every day by going over to cemetery and talking with Alexander or by pressing on Sammy the seahorse’s belly and thinking about how he loved that toy. But I don’t do that. I do visit Alexander at the cemetery and blow bubbles some times I cry some times I don’t.

Nancy is upset at my family for thing they have done either incorrectly by her standards or not done at all. I am less concerned about their actions than my own actions.  Nancy’s family is very close while my family is very distant.  If Nancy does not speak to her mom at least five time a day, well … If I speak to my brother or sister five time in half a year we are doing good. Nancy has lots of extended family in her life coming to be with her on this sad anniversary .  I wrote a letter to my extended family last January to try to reconnect but never mail it.

So where I am going with all of this?? I don’t really know.  I just miss my beautiful boy.

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“I am sorry but…”

This is Alexander in the ER on March 8, 2010 the day we found out about the Cancer

“I am sorry but…” Four words you NEVER want to hear from a doctors mouth. Those were the terrible words we heard in the ER on March 8, 2010. They were followed with “we found a mass in Alexander’s abdomen”. We stared at the doctor in disbelief. How could there be a mass in his abdomen? What does that mean? We would soon find out. Not long after that, we were introduced to the man who would become Alexander’s primary oncologist. He had with him residents and a medical student. They examined Alexander, we talked about how quickly he had changed within the prior few weeks, and showed him videos of Alexander’s- happy and the very very sad and upset. Shortly after that we were brought up to the Neely Bone Marrow Transplant Unit. The place that would become our second home. He was put in a crib in a room. Nurses came to him quickly, bringing him toys to play with and machines to set up to watch his vital signs. Everything happened in Slow Motion for us, but yet, was going very quick. By about 12 noon they were ready for him in MRI. We went down and met the woman that would quickly become out favorite anesthesiologist. She explained what would happen. We gave Alexander a kiss, and they put him to sleep. We walked out to go get some lunch as they said it would be “hours” for the MRI. Once we were in the hall, Richard broke down in tears, wondering if we would ever see Alexander alive again.

We did see Alexander again within a few hours, and we began the “cancer journey”. A journey that no parent ever wants to go on. The next few days were filled with blood tests, scans and a lot of waiting. He had his biopsy and then we had more waiting to confirm that it was indeed neuroblastoma. We would learn so many different things over the course of the next couple of weeks. Chemo, counts, watching for a temperature rise. Right from the start Alexander had issues with his blood pressure and we would meet the wonderful nephrologists that would take care of him throughout his treatments. We met many wonderful nurses, doctors and other staff as well. It was clear that he was in a place that was going to give him great care.

The next 13 months would be filled with days in the hospital, days in the clinic, medications, more medications, feeding tubes, IV nutrition, the list goes on and on.

During that time we met some of the most wonderful people in the world. I have made friends that I wish I had never met, but will be forever grateful that I know! When you end the “cancer world” you have to learn a whole new language. It isn’t just called “chemotherapy” it is Etopside/ VP16, Cisplatin, carboplatin, Vincristine, Doxorubicin, Topotecan just to name a few! Each one has its own set of side effects, length of infusion, type of infusion! It can all be very confusing and hard to understand. But, as you make these new and wonderful friends, you can “compare notes”. Share what kind of side effects your kid had, and how to deal with them best. Of course not every kid will have the same side effects. Alexander never had the mouth sores until he went through his Bone Marrow Rescue treatments, other kids had them all along. Some kids “counts” drop really fast, others don’t drop very much at all. When Alexander first started treatments, his counts never went to Zero – this was great and meant he didn’t have to stay on the GCSF (a daily shot in the thigh!) as long. But, as he had more and more treatments, and they changed his protocol, his counts dropped to Zero and stayed there much longer. We had to be even MORE careful about taking him out and staying away from as many germs as possible. It also meant more admissions, because now he was developing fevers, and more often than not that let to an infection for Alexander.

I have always been the one to bake cookies, send cards, money, etc to those in need. It was very strange for me to be on the OTHER side of the table. But, I did learn to accept the wonderful gifts and donations that people offered to us. One of my friends went around our neighborhood to tell our story. The generosity of these people were truly amazing! Most of them, I did not know and had never met, but yet they reached out to us! We were given presents for Alexander, money and a box filled with various gift cards for us!! I was overwhelmed by it all!

When Alexander was first diagnosed we had a lot of people ask “what can we do for you?” At first it was so hard to know just what it was that we actually needed. It was all so overwhelming at first! But, as time went on, we were able to figure things out and let people know.

I have made a list of things that I think would be helpful if you ever find someone in need like we were.

1. Meals! Finding time to cook can be very difficult! Find out what the family enjoys and make them a meal or two. Be sure to bring meals in disposable containers, so they don’t have to worry about getting your favorite pan back to you. Since it was just Richard and I eating, smaller individual or 2 person servings were best. Even better were things that came in microwaveable containers! We spent a LOT of time in the hospital, more than at home. There are no stoves/ovens in the hospital, but there is always a microwave to be found. You could set up a Care Calender for the family, so people can sign up for meals, and other help. http://www.carecalendar.org/ I know one family that used this and it was very helpful for them.

2. Yard work! Alexander first got sick in the winter, so snow shoveling was what we needed first. Thankfully, my mom had hired someone for the driveway. We did have some neighbors that helped out with the walkways. We have a pretty nice lawn with lots of flowers and trees too. But with those things come WEEDS! We tried to keep up at first, but since we were IN the hospital more than OUT of the hospital, it got very overwhelming. I reached out to the Youth Group at my church. I had offered to make a donation for their help, but they stepped way up, and came and did the work every week or two! It was such a wonderful help for us!

3. Gift Cards!!! At the time of treatment, there was an Au Bon Pain at the hospital. A couple of people found that out, and sent me gift cards for there so we could “treat” ourselves. Find out what, if any restaurants and stores are near the hospital or where the family lives. We received many from CVS, Target, etc, which were very helpful for the little things you just need in life. Find out which supermarket they shop at get them cards for there! We did also receive several pre-paid MasterCard/Visa type cards. While I did very much so appreciate them, they can sometimes be a pain to use! Some stores are fine with them, but I found other stores, that if the balance was less than the amount of the order, I could not use it!

4. Flowers and Fruit – Before sending these, find out if the patient can have them! On the unit that Alexander was on Flowers and Plants were NOT allowed. Prior to all of this, I didn’t know that fresh fruit was NOT allowed by some cancer patients at different times of treatment. Edible Arrangements are wonderful, but as a nurse, I can tell you that sending them to the Hospital is NOT a good thing. They take up a LOT of room that just isn’t available in the refrigerator.

5. CALL – E-MAIL – VISIT! Please do not treat people like they have the plague! We had many people say to us “I don’t want to bother you”. Most people have caller-id – if they don’t want to talk, they won’t pick up the phone!! Many of my friends from the hospital have talked about how they felt so alone, because their friends stopped inviting them to things, or calling them on the phone, or e-mailing them. Yes, we might not be able to join you for an event, but you never know and just being invited makes you feel good! . When Alexander was in the hospital, it was actually sometimes EASIER for me to get away! If he was doing well, I did not mind leaving him, because Richard or my mom was always with him, as well as all of the nurses and doctors and I would just be a phone call away. I NEEDED to have breaks from the hospital! There was one time, I realized I hadn’t even left the UNIT for 2 days! It was a very small unit, and you can go mad being there ALL the time! Call up and ask if you can visit, and take someone out for lunch or a cup of coffee or something like that. We kept a care pages during Alexander’s journey. If someone does that, read it – and write messages! I wrote every day, and I wouldn’t expect someone to write a message every day of course. However I did read each and every one of those messages, and they were uplifting to me!

6. Become a blood and/or platelet donor! Alexander received close to 100 transfusions during his treatment! Each time you donate blood you can help up to 3 different people! You won’t be able to donate directly to the patient, but you WILL be saving a life!  http://www.redcrossblood.org/

7. Get yourself on the Bone Marrow Registry. http://marrow.org/Home.aspx Again, help save someone’s life!

8. PRAY!! No matter what “god” you believe in say some prayers! While we didn’t get a miracle for Alexander, I know that is was everyone PRAYING for us that got us through. Sometimes, that is all that you can do. Pray for PEACE for the family – for strength to make it to the next day.

Some things NOT to say or do (and yes these are all things we heard or our friends had said to them!)

1. “Things happen for a reason”. Umm….yeah, no. 8 month old babies do NOT get cancer for a reason. Babies are not BORN with brain tumors for a reason.

2. “God Won’t give you more than you can handle” Oh yeah? You ever been in THIS situation? Please keep you “words of wisdom” to yourself!

3. “Be STRONG!” Why? Why not be weak? Why not cry non-stop all the time, wouldn’t you?

4. “I would like to send a get well card but he is not going to get well.” Yeah, but you could send a thinking of you card, or a card to make that person laugh? One of our friends daughters got a card that said “CHEMO SUCKS”!

5. “It must’ve been what she ate while she was pregnant” (not said directly, but on someone else’s facebook page – be care what you post out there!)

6. “Have you thought about XYZ Hospital?” Someone asked me about St. Jude Hospital. Yes, it is a wonderful hospital, but I wasn’t ready to pack up and move the family out of state! Unless you have had first hand experience with the same situation the family is going through, please keep you comments to yourself. No matter what you have read/head about from someone else, people have chosen where they want to be treated. For us Floating Hospital was the BEST place to be. Even when we did get a second opinion, we really wanted them to say the same thing so we wouldn’t have to change hospitals.

7. Do NOT send emails/links about myths of the things that I might have eaten or drank that could have caused the cancer.

8. If someone asks you for help, do not suggest something on how they can get it themselves. One example I got from a friend: Asking for help: do you mind stopping for a gallon of milk and bring it by while you’re out answer: did you know there’s a drive- thru diary a few miles up the road you could go.” At one point there was a particular cookie I wanted – sure it was “just” a cookie, but I was having such a hard time that this little cookie would have made a BIG difference! Many people gave me suggestions of where to go find one, but only one person actually GOT them for me! You would be amazed at how such a little thing as a cookie will make a BIG difference!

9. “I wish there was a manual out to teach me how to talk to a person who is going through Cancer and exactly what to say to them” Umm…sorry, if WE don’t get a book on how to deal with your child getting cancer at day old, 9 weeks, 8 months old, 4 years 12 years old, etc, then YOU just have to figure out how to talk to us on your own!\]

10. “I don’t know how you do it”. Well, do I really have a CHOICE? You just DO – you take it one day at a time and keep on fighting!

19 Comments »

How do you define rare?

http://www.youtube.com/watch?v=1FRC94_25kA

How do you define rare?  

rare/re(ə)r/

Adjective:
  1. (of an event, situation, or condition) Not occurring very often.

Prior to March 8, 2010, I never knew anyone that had a child with cancer.   I had “heard” of childhood cancer, read books about kids with cancer, watched tv shows.  I cried over the St. Jude’s commercials, and every year went to the “Scooper Bowl” to support the Jimmy Fund.  But, other than that, I never really gave much thought about childhood cancer.  Until that one horrible day in March, when the doctors said “I am sorry, but we found a mass in Alexander’s abdomen”.

There has been a lot of chatter on facebook the last few days. Some head of media relations, while posting his thoughts on the creation of a bald Barbie, actually said:

childhood cancer is exceedingly rare”  and in responding to the creation of a bald Barbie: “But could they end up being terrorized by the prospect of it in a far outsized proportion to their realistic chances? There is no reason to create this sort of fear,”

Needless to say this has caused a LOT of anger among the many parents that have children suffering from some form of childhood cancer.

While, yes, if you count all cancers as a whole, I suppose you could say that childhood cancer is “rare”.  But to the 46 kids a day that find out they HAVE cancer, and the 7 kids that will die EVERYDAY, “rare” means NOTHING!

Alexander had neuroblastoma, which IS RARE.   (from Wikipedia) :

Neuroblastoma (NB) is the most common extracranial solid cancer in childhood and the most common cancer in infancy, with an annual incidence of about 650 cases per year in the US [1], and 100 cases per year in the UK

Hmmm….rare but yet “most common” – how do those words even go together?

What can be done about all?  Well, some years back, it seems to me that breast cancer was such a “taboo” subject one that people didn’t talk about. Now, however, it seems as if there are pink things everywhere!  A whole month is dedicated to it, 2 day walks, etc.

Now, I am not proposing to turn everything in creation GOLD (I mean really, does a PINK Mixer, really do anything for breast cancer?)  But, perhaps, if there was more done to raise AWARNESS for Childhood cancer, then more FUNDS would be put out there to help raise money for research.  The more research, the more chances of finding treatments, and giving these kids a chance to grow up!

Some groups that focus SOLEY on Pediatric Research:

http://www.makenoise4kids.org/index2.php

http://www.beatnb.org/  (neuroblastoma focus)

http://www.alexslemonade.org/

http://www.cookiesforkidscancer.org/Default.asp

http://www.vai.org/Research/Labs/Neuroblastoma-Translational-Research/neuroblastoma-medulloblastoma.aspx

http://www.stbaldricks.org/

http://www.nballiance.org/ (neuroblastoma focus)

Here are some FACTS about Neuroblastoma and childhood cancer:

Neuroblastoma Facts

  • Neuroblastoma is a common and often difficult to treat cancer, the most common cancer in infancy. (UCSF)
  • In the United States, about 600 children are diagnosed with neuroblastoma each year. (UCSF)
  • It is the most common tumor found in children younger than 1 year of age.
  • Childhood cancer is the number one disease killer in children.
  • Neuroblastoma is the most common extra cranial solid tumor cancer in children.
  • Every 16 hours a child with neuroblastoma dies.
  • There is no known cure for relapsed neuroblastoma.
  • Nearly 70% of those children first diagnosed with neuroblastoma have disease that has already metastasized or spread to other parts of the body. When disease has spread at diagnosis and a child is over the age of 2, there is less than a 30% chance of survival.

 Childhood Cancer Facts

  • There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
  • The National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
  • The American Cancer spends less than 70 cents of each 100 dollars raised on childhood cancer.
  • Cancer kills more children than any other disease, more than Asthma, Cystic Fibrosis, Diabetes and Pediatric AIDS combined.
  • Sadly, over 2,300 children with cancer die each year.
  • Every school day 46 children are diagnosed.
  • 1 in 330 children will have the disease by age 20.
  • Cancers in very young children are highly aggressive and behave unlike malignant diseases at other times in life.
  • 80% of children have metastasized cancer at the time of their diagnosis. At diagnosis, only 20% of adults with cancer show evidence that the disease has spread or metastasized.
  • Detecting childhood cancers at an early stage, when the disease would react more favorably to treatment, is extremely difficult.
  • Cancer symptoms in children – fever, swollen glands, anemia, bruises and infection – are often suspected to be, and at the early stages are treated as, other childhood illnesses.
  • Even with insurance coverage, a family will have out-of pocket expenses of about $40,000 per year, not including travel.
  • Treatment can continue for several years, depending on the type of cancer and the type of therapy given.

What Causes Childhood Cancer?

  • Every family is potentially at risk.
  • In almost all cases, childhood cancers arise from non-inherited mutations (or changes) in the genes of growing cells.
  • As these errors occur randomly and unpredictably, there is currently no effective way to predict or prevent them.
  • Most adult cancers result from lifestyle factors such as smoking, diet, occupational hazards and exposure to other cancer causing agents.

Cancer Research Funding

  • Nationally, childhood cancer is 20x more prevalent than pediatric AIDS.
  • Pediatric AIDS receives 4x the funding that childhood cancer receives.
  • In one month there are 2x as many deaths from childhood cancer as pediatric AIDS for the entire year.
1 Comment »

STUPID CANCER!!!

I sometimes follow other kids carepages, even those that I do not know.  I had stopped for a while after Alexander died, because it was just too hard.  But, there were two that I did follow, because they were both very public and open with their stories.
Both of those little girls died this week.   Both from neuroblastoma.   The first little girl, Charlotte was 5 years old.  She fought against this evil disease for 2.5 years.

http://powerdnn.costello.com/pfc/Home.aspx

The second little girl was named Saorise.  She only fought for 7 MONTHS.  From what I have read on her families blog, her death, much like Alexander’s was very sudden and unexpected.

http://danvers.patch.com/articles/saoirse-fitzgerald-a-fighter-the-whole-way-through#photo-7982655

http://myfamilyhascancerx2.blogspot.com/

http://newmomnewcancer.blogspot.com/

We had Alexander for 13 months after he was diagnosed.   No matter how short or how long, it is never enough.  It is so sad that these kids have to go through all of this chemo, surgery, radiation and CRAP only to still die!!!  Unless you have lived it, you can not imagine how hard it is to watch poison be put into your beautiful childs veins – knowing that it will make him sick, but yet knowing that the poison is his best chance at growing up to become a fine young man.

The amount of funding – or rather lack there of – that childhood cancer’s receive compared to other cancers – and other diseases is appalling.   It is as if these kids don’t “matter”.   But they DO matter.  The children are the ones that will grow up and change the world!   If we can’t save the kids, then what will become of our world?

Earlier this week we went into Boston to see a quilt that was made up of many different Angels.  All of these Angels have died from cancer.  It was a site to see.  Someone said “awesome” on my photo. And yes, in some ways it is awesome, because it was so beautiful.  But really, it was sad, because of how many Angels there were – and it keeps getting bigger.

The organization, Make Noise 4 Kids.  Was started by a boy who was able to beat his cancer.  After hearing about the death of a small child on his unit, he knew that someone had to MAKE SOME NOISE about Childhood cancer, and start to raise funds.   His foundation, presented a check for $50,000 to the Dana-Faber cancer research group.  This was wonderful – but sadly, they could not get one media group to cover this.  They were told that it wasn’t a “local” enough story.  Ummm…hello!?!?!  You have THREE children’s hospitals in this area, all of which treat kids with cancer.  Some of those kids, including my Alexander were on that quilt!  A LOCAL group was receiving a check for $50,000!  How is that not local!?!?

http://www.makenoise4kids.org/NationalQuiltLandingPage.php

1 Comment »

A New Normal (yet again!)

nor·mal/ˈnôrməl/

Adjective:
Conforming to a standard; usual, typical, or expected.

Noun:The usual, average, or typical state or condition.

I have started yet another “new normal” phase of life. I seem to have been having a LOT of new normals these past 5 years.

First I went from being a single person to being a wife. No longer could I pack my bags on a whim and go and visit my friends, or plan a trip to Disney with my aunt. I had someone else to think about. Having lived alone in my house for 4 years prior to being married, it was a bit of a change. As was having to share a BED! I like to stretch out when I sleep! If only we had room for a KING sized bed, my husband would not have to fight me for the blankets so much.

At the same time, I went from being a student, to being a new Nurse. There is always something to be learned in nursing, but it is weird to go from one day having to have your teacher over your shoulder when giving a shot, to being on your own that is a bit unnerving! (for the patients too I am sure!)

Then just as I had figured out how to be a wife, I became a MOM! It was a wonderful time, but a lot of changes too. No longer could we go out whenever we wanted to for dinner or a movie. Our sleep schedules were no longer our own! We couldn’t just leave the house without packing a bag. We went on a trip – there was more stuff for that one little 4 month old boy that we had for the two of us together!

Then, just as we were figuring out how to be parents, the word “cancer” came into our lives, and gave us yet another “New Normal”. Calls from the baby in the middle of the night, were no longer just about eating or diaper changes. Now we had to worry about feeding tubes coming out, TPN lines getting tangled, TPN machines WORKING right! Leaving the house was still a chore of packing – but now, it was packing “just in case we have to be admitted”. I learned to leave a box in the car with “Hospital Thing” Alexander had double of most toys, so we didn’t have to worry about leaving a favorite one at home. Bath time was not as much fun – no more big splashes, because we had to be careful about his central line. Bath time is not fun when you have to cover up in “press and seal”. Worrying about germs went beyond the normal most people think about. No more trips to the grocery store, or the mall – too many people. Couldn’t go to church anymore – again too many germs. Family trips were to the hospital – not the park. We had to learn to give Alexander medications through the feeding tube – I had to learn to put in it to him (well, that or keep making “field trips” to the Winchester Hospital ER – after 3 I was done!!!) Normal was looking for signs and symptoms of infection measuring vomit, to make sure it wasn’t “too much”, counting diapers, daily temperatures, visits from nurses for blood pressure checks. More days than not Alexander was an inpatient. That became our “normal” home. Sometimes, Alexander was scared when we came home – crying when I put him in his crib, as if he didn’t know where he was because he had spent so much time there.

Then came that terrible day in April – our next ‘new normal”. Life without Alexander. What would we do now? No longer did we have to go to the hospital for appointments. No more blood pressures, no more midnight, 3am, 5am, diaper changes. No more medications to worry about. No precious little baby boy to take care of.

What do I do now? How to I go back to life before Alexander? I had not been working since he was born – what should I do now? Could I go back to work as a nurse (I have) should I do something totally different? Who was I now that I wasn’t a “stay at home mom” anymore?

During the few times I was able to be away, get to church, I always left my phone on vibrate – just in case I got a call. I don’t have to do that anymore – it seems strange to not have to “worry” about getting an emergency phone call.

People ask how I am doing – I have to answer “one day at a time”. Each day is different. Some are easier than others. As I face this “new normal” – I do it slowly. I don’t want to rush into a change – as I am still trying to figure out who I am. I know I will ALWAYS be Alexander’s Mommy – but not having him here on earth to love and to teach how to become a fine young man is difficult.

I read stories about other “cancer mom’s” or moms of angels and see the wonderful things they have done to promote awareness for neuroblastoma and to raise funds for research. I don’t feel that is for me however. I have been making hats for kids in the hospital, and I had a Pillow Case party to make Pillow Cases for the kids with Cancer http://conkerrcancer.org/home/ (Thank you to all that came 19 in all made that day!!) My friend Sandy and I made Gold Ribbon lollipops for Childhoood Cancer month. Those things are good for me – keeps my hands busy and I can picture the kids who will get them.

I will figure out this new normal soon enough. Of course, once I do, another change will come my way!

5 Comments »

Dear Alexander,

    

Dear Alexander,

Today is October 1st.  It has now been 6 months since you left us to go be with Jesus.  Mommy and Daddy think of you every day, and we miss you so much!  We miss your hugs and smiles, and your beautiful laugh.   We miss snuggling with you and reading your books, and saying your goodnight prayers.

6 months – some times it seems like yesterday, other times, like a lifetime ago.  People often ask us “how do you do it – how do you move on?”  I tell them, one day at a time.  Some days are easier than others.  Some days all I want to do is cry because I hurt so much, other days I can make it through the day.

You missed Easter this year.  You never did get to enjoy Easter. Your first, was just after we found out you had that STUPID CANCER.  You were so small and sick, and we just couldn’t get you to smile.   Both Mother and Fathers day came and went since you were gone.  Last year we were in the hospital for those day, this year, we were without you.  It was hard to feel like a Mommy or Daddy when you are in Heaven.  We will ALWAYS be your Mommy and Daddy, but it was so lonely here without you.  Your Auntie Lisa send me a nice treat, and Mommy’s friend Crystal spent some time with me.  You remember her right? She is S&C’s Mommy.  Sometimes I get sad when I see C.  because you were about the same age, and I am sure you would have been great friends.

4th of July came without much fan fare for us – Last year we were in the hospital, as were most of your friends.  They let us go and watch the fireworks in a special place.  I didn’t take you because you were sleeping and I didn’t want to wake you up.  I hope you could see beautiful fireworks from Heaven.

Mommy and Daddy went on a trip to California.   It was good for us to get away, but you were never far from our minds.  Daddy saw someone blowing BUBBLES one day and he thought of you then.  We stopped in Alexander Valley and took pictures.     

While we were at the family reunion, they dedicated a bush to you and we got to tell Daddy’s extended family all about you. 

On the way back, we were hungry for lunch, and we stopped – when we opened the menu we saw the restaurant was named ALEXANDER’s!  Did you put it there just for us?

   

Mommy went back to work as a nurse.  After you died I wasn’t even sure if I wanted to be a nurse anymore.  Taking care of you was so hard, I wasn’t sure if I could do that anymore.  Of course, I take care of grown ups and not little kids, so it is a little different.   It went okay – it was hard at first.  Some days I would leave thinking “what am I doing here?  I just want to be home in bed with the covers up over my head!!!”   But I kept going back.   Two weeks however, I started a new job.  I am going to be working as a Visiting Nurse. Going into people’s houses to check on them.  You had visiting nurses and you liked them right?

This month Daddy and I went to the Cycle for Life to help out and cheer on the bike riders as they raised money for your friends at the hospital.   We saw many people we knew.  One of them, didn’t know that you had gone to be with Jesus, so it was very sad to have to tell her.

We saw another little boy C. who has the same kind of cancer you had.  I have to say I was a little jealous.  He is doing so well.  Everything went right for him, he didn’t have the kind of problems that you had.  But then I think, how can I be jealous of someone who is doing so well!!?!   I am of course happy for him and his family, but I do stop and wonder – why him, why not my Alexander? Why did you have to get a really bad tumor, that made you hurt, made you not be able to eat or walk or do all the normal things a little boy is supposed to do!?!?!   I try not to get angry, because anger won’t get me anywhere.

Speaking of anger – you know I am still mad at some people.  Please help me deal with that anger and just let it go.   I am trying, but, please send me some of your good and loving ways, to help me move on!

You friends C&N are having a tough time right now.  Please look out for them and put in a good word with the Big Guy.  Tell him you don’t need any more friends with you in Heaven!

Okay – I should end here, or I will just end up crying all day long.

I love you and I miss you very much,
Love,

Mommy

11 Comments »

September is Childhood Cancer Awareness Month

The president has declared September to be Childhood Cancer Awareness Month

http://www.whitehouse.gov/the-press-office/2011/09/01/proclamation-release-national-childhood-cancer-

awareness-month-2011

I am sure it will go by for most without much fanfare.  There won’t be any Gold (the color for Childhood cancer) Lids on the Yogurt tops, or people Petitioning Facebook to go “Gold” for a month.  For most, the month will go by as any other – the start of school, a long holiday weekend, thoughts of Apple Picking and all that goes with it.

Of course, this year, much of the month will be taken oven by Memorials of that tragic day 10 years ago when are country was forever changed.  I do not want to take away from any of that, but I also do not want this month to go by without notice.

Although for me, two years ago, this month meant only those things I have already mentioned – in addition to remembering my dad’s Birthday.

Before then, I “knew” that kids got cancer, but I never really thought much about it beyond that. I supported the Jimmy Fund Every year by eating ice cream at the Scooper Bowl  and bought the raffle tickets at Stop and Shop and Burger King every year.  I knew about St. Jude’s hospital, and remember watching the shows looking for money.   As a kid, I read a book about a girl who got cancer.

Outside of those things, I never really gave it much thought.   That is until March 8th, 2010 when I heard those horrible words “I am sorry but we found a mass in Alexander’s Abdomen”  The next few hours were a whirlwind of activity.  We met Dr. Kelly and his Oncology team, we were brought to the Pediatric Cancer Unit.  I was in the hallway and a woman came up to me saying “I am not really meeting you, I hope I don’t have to really meet you, but in the mean time here are some gift certificates and parking tickets”.  Alexander was brought to MRI where he was fully sedated.  We left him there wondering “what the hell just happened, and will we see him alive again?”  The next days were filled with so many tests and questions.   Our once happy little boy, wouldn’t give us any of his wonderful smiles.  He was in pain, a lot of pain.  He had a surgery to put in a central line and do a biopsy, he started chemotherapy.  We started down a long road.

When were first found out Alexander had Neuroblastoma, we were told that because they caught it before the age of 1 he about an 80% chance of beating this horrible disease!  We would take that percentage.   Of course, as time went on, we learned that Alexander didn’t “read the book” and decided to be more of a challenge.   While he was showing some signs of improvement, he was not progressing as they would like him to.  It was time for a change – to a new High Risk protocol.  His “odds” went down at that point, and after that I never asked again – I didn’t want to know – I wanted to focus only on the GOOD, even if it was so little.

The fight went on, and at one point, he had some good scans, and good lab reports.  We thought we were doing okay.  But that how it can be with cancer, wait just a minute and things will change in a heartbeat.  Another scan, more labs tests, not so good results.  It was decided that his only hope was to get more of the tumor out.  The doctors worked hard – very hard for 16 hours.  However, Alexander’s little body and heart just couldn’t find any more and he went home to be with the Angels.

We have talked to do of the doctors that were at the surgery as well as a nurse at the hospital. Everyone was very upset about his death.  It was not “suppose” to happen (but then kids aren’t “suppose” to get cancer but they do)

It has been 5 months since we lost Alexander, and 18 months since we heard those horrible words.  Our lives have been profoundly changed forever.   Changed for the good, because we had Alexander in our lives, even though it was for a very short 21 months, he was the joy of our lives. Even in his sickness, he brought great happiness to those around him.  I know he taught the doctors, nurses, students a lot, and that he will not be soon forgotten.  During his 13 month treatment we met some wonderful families.  People we would not have otherwise met.  Some of those kids beat their cancer, some are still fighting, and some lost their fight like Alexander – Dury – 1 year, KerriAnne 9 years 9 months, Thomas – 4 I think.

The loss of Alexander is a sadness I can not really describe but I will try to explain.  The house is so very quiet now.  No laughter, no crying – just silence.  Our days are spent sitting at the computer or watching tv, because when we aren’t working we don’t have anything else to keep us busy.  I look at his pictures every day around the house, and remember how wonderful he was.   When I am out I sometimes think “oh Alexander would have liked this or that” and get very sad because I am not able to show him things, or teach him new things.  It makes me sad to think that if we ever have another child, he won’t get to wear an “I’m the Big Brother” shirt, and do all the things that a big brother does.

So – what do we do now?  We move forward – one day, one hour at a time.  We continue to pray for those that are still fighting, and for those looking to find a cure.

What can YOU do?  Below are a few ideas for how you can support those fighting childhood cancer:

1.  Call your local Children’s hospital – ask for the Childlife department and see what they need.  Maybe you can donate new toys? Make blankets? Fun sheets for the hospital beds. Hold a BandAid drive (for the fun ones!)

2.  Eat at Chili’s on Sept 26th!   http://www.createapepper.com/BigDay.aspx

3.  Hold a lemonade stand: http://www.alexslemonade.org/

4.  Have a bake sale: http://www.cookiesforkidscancer.org/

5.  Make Pillowcases: http://www.conkerrcancer.org/help.html

6.  Support a family in need (our friends)  http://colenh.com/september_8_2011_-_2nd_annual_cole_stoddard_fundraiser

7. Ride  a bike! http://www.cycleforlife.com/faf/home/default.asp?ievent=478337

7 Comments »

In between breaths

Margot's motherhood blog

Dollhouse Homestead

Seven Acres in Suburbia

From the Heart

my journey through love, life and loss

CorFitness

Strong Mind. Strong Body.

My Thoughts Now.....Life After The Accident

How I am coping with life after the accident that took my Zachary and my independence away.

New John for a New Year

Life is different now

chemoanddonuts

"No Sprinkles Please"

A Generous Helping

Of Laughter & Tears

blessedstray

Sometimes I'm St. Ray; sometimes I'm a stray. I am always blessed.

God Wins...but can I ?

A Mother's Journey

Sharon Randall

This is my journey -- what's yours?

Forever 21

A broken heart is open to receive...

Speaking Up for Childhood Cancer

Increasing awareness to fight the number one disease killers of children worldwide

Thanks to my Lucky Star

a story about being guided by the brightest star

de Niall Heaven Bound

Welcome to the CookieGal's world!

Penny writes... Penny remembers

Life changes, usually when you're not ready

Grieving Dads

To the Brink and Back