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4 Long Years

Tomorrow it will be 4 years since Alexander joined the angels.   4 years.  How did that happen?  It seems like a lifetime ago, yet it seems like yesterday.

I TRY not to think about what he WOULD be doing if he was alive, but that is hard.  I have many friends who have children who are the same age as Alexander, so I have a constant reminder.  I have heard some bereaved moms say they just can’t be around children that would be their age.  I can understand that.   However, for me it is okay most of the time.

I don’t have anything profound to say in this post.

I miss my beautiful Alexander.

 

Alexander looks out the window to the world!

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More on the Roller Coaster

I was reading a story recently about a man who had lost his wife to STUPID cancer.  He said it wasn’t so much the anniversary days (day of death, her birthday, etc) that he had the most emotions at.  He expected those days, he could “plan” for them.  But rather, it was the random things, that thru him on an intense emotional ride.
I can totally relate.   Some of the toys that were Alexander’s have his name on it.  Some because it was just fun to have stickers with his name on it.  But others, many of them, have a hand written name, and it was only because it was a toy we would bring to the hospital.  We wanted to be keep it separate from the hospital toys, and if we left it behind by mistake, someone could get it to us.  There are days I come across one of those toys, and I am brought right back to those days, so many many days, in the hospital.

When Alexander was sick, I followed several other kids who had neuroblastoma.  Sadly, one by one they died.  When the last one died, I decided that I just couldn’t follow any new kids. I would of course keep in touch with my friends from the hospital, but I wouldn’t follow new kids I didn’t know, because I just couldn’t get that emotionally involved anymore.    Well, “thanks” to Facebook, that hasn’t always happened.  I have followed some new kids, I have become Facebook friends with the parents. Some have died, some are doing awesome.    My heart breaks for the parents of the kids that have died.  I feel their pain, I am angry at cancer with them.   I pray for peace for them.

And when I read about kids that are doing great, I rejoice with the parents!   But, then the emotional roller coaster also hits me.  And I get jealous.  I wonder why THAT child, why not Alexander?  Why was there a new treatment available for that child, and not my Alexander or all the other children that died before him??   I guess it is really more anger than anything, because how can I be angry at a child that is WELL.   Of COURSE I am happy for that child and parents!

Then there are days like today.  Ones where I wake up, and find out that another beautiful child has lost her battle against the STUPID cancer beast.  We first met Shelbie in 2010 just after she was diagnosed with STUPID cancer.  4 years ago this month.  She fought so very hard, but the beast was stronger.  She earned her angel wings last night.   It makes me so angry that these children fight so hard, and still die. It is so unfair.    My heart aches for her mom. (I did not know her dad well, but my heart is heavy for him too)

As you run around crazy these last few days before Christmas (if that is what you celebrate) please take a moment, send up a prayer, positive thought or good vibe for those that are broken-hearted this Christmas.  Don’t worry about getting “everything finished”  know that what you have done IS enough, and that Children will remember LOVE more than they will remember the STUFF.

 

Christmas 2

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Roller Coaster Ride

Last night I had a dream that I was on a roller coaster.  It was a crazy ride, but the scary part was that the roller coaster was falling apart as we were riding it!  I often feel like my life is like that.   A crazy roller coaster ride that is sometimes falling apart.

We have returned once again from a wonderful weekend at Camp Sunshine .  I have written about our time here before:
https://thecookiegal.wordpress.com/2013/05/28/camp-sunshine/

https://thecookiegal.wordpress.com/2014/06/01/some-thoughts/

https://thecookiegal.wordpress.com/2012/05/28/finally-not-different/

This was our 4th time there, although the first time we had a chance to go in November.  The main difference about the November session is that you have a chance to make a Quilt out of your children’s clothing.  Some people make a large quilt, some a smaller one, and some just a pillow case.  Anything is okay.  I had saved many of Alexander’s outfits for this activity.  Before we went to camp, I told Richard that I was going to need his help with the quilt.  I didn’t really have any idea of what I wanted to do.  As we drove up to camp however, I started having a panic attack about cutting up Alexander’s clothes!  I realized I was not going to be able to do that!  When we got to camp, Richard started to talk with one of the quilters, her name is Ruth.  He told her his idea for the quilt. He wanted to do a big letter “A” and use the clothes in small pieces to fill out the “A”.  The next day he brought up the clothing and he and Ruth started to go thru it.  They noticed that there was a lot of clothing with Animals on it.  They also noticed that the clothing had “patches”.  Ruth suggested that she cut squares around the patches and work with them.  She told us she had never done anything like this before (although she has been quilting for many many years!!)  As we worked on the quilt, we decided to add a few of Alexander’s favorite things to it – a Picture of his Seahorse, Curious George and of Course Oreo Cookies!  They were able to print out photos for us and using a very special transfer paper/machine get them onto fabric.    Ruth worked very hard all weekend.  I put a few stitches into the binding

IMG_0144

Back to the roller coaster ride.  Throughout the weekend, we have parent groups.  We talk about our children that have died during this time and how we are dealing with that.  Everyone has a different and special story. Some parents had only lost their children a few months ago, some many years ago.  It is hard to hear these stories, but it is also nice to know that we are not alone in our grief.

At one point during the weekend, I couldn’t find the baby wipes I had been using in the dinning hall.  I went into a panic.  Now, I know what many of you are thinking “a panic? over WIPES?!”  Yes, that is what happens when you lose a child/  Even the smallest of things can send you into a full blow panic attack!!!!   Honestly, I don’t remember being THAT much in a panic when Elizabeth was having her open heart surgery!

Continuing on the emotional roller coaster is the constant fear that Julia or Elizabeth will get cancer.   You might think “no, that couldn’t happen again”, but sadly you would be  very wrong.  On the Angel Quilt there are THREE sets of siblings that have died from cancer.  I recently met a family that had lost THREE daughters to cancer!!!  Even in my own family – my dad died from cancer and two of his brothers also died this year from cancer!    I TRY not to worry, and I TRY to stay off “Dr. Google”, but sometimes, a bruise, a cold and even a little constipation can get my mind spinning to that place.  The place where I would hear once again “I am sorry but your child had cancer”

I continue to be told by others that they are “inspired” by me.  I am not sure why. I guess it is because they wonder how THEY would be if their child die.  I suggest though that you don’t think about that, because, you don’t know how you would be, and I don’t ever want anyone to know!   What I would like, is to INSPIRE people to DO good things in life.  If you are going to look at me, see that I am not in a puddle on the floor (although there are many days I WOULD like to be!!!)  There are so many ways to help those in need, and not just kids fighting cancer!   I know many families that have started foundations, organize blood drives and hold huge fundraisers. That is wonderful, but to me that is VERY overwhelming!  If you have the time and energy to do a big event, then GREAT!  But if not, think on a smaller level.  Maybe, instead of giving gifts to the adults this year at Christmas, consider donating that money to charity.  After I turned 40, I decided I didn’t want Birthday Presents anymore, instead, if someone wanted to do something for me, I asked for donations to be made to Birthday Wishes. Birthday Wishes is a group that holds birthday parties for children that are homeless.

Okay – I think I am going to get off the Roller Coaster ride for tonight and maybe actually go to bed early!

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Time To Save some LIVES!

Summer is a tough time for the Red Cross.  People are on vacation, and just don’t take the time to make appointments to donate blood and platelets.  I am not able to donation, but Richard has received several phone calls and e-mails looking for him to make an appointment to donate. On Monday, he did make one for Tuesday. That evening he got a call !  He explained that he had JUST made the appointment that morning!

While Alexander was in treatment, he received over 100 transfusions!  Blood, Platelets, Plasma!  So many different things.  It is not just people fighting STUPID cancer that need blood.  People in Accidents, having surgery, etc.  There is ALWAYS a need!!  One of his surgeries had to be delayed because of shortage of platelets.  Richard wrote to the news stations, and Alexander got to be a STAR!

http://boston.cbslocal.com/2010/12/20/baby-in-need-of-platelet-donations/

I have heard some people say “I won’t donate at the Red Cross because they SELL their blood to hospitals”. Well, that is just not true!  Yes, they may charge a fee, but it is not for the blood, rather the time and money that it takes to obtain the blood and make sure it is SAFE!

From the Red Cross Site:
Does the Red Cross sell blood?
No. There is never a fee for the blood itself. The Red Cross charges for expenses incurred in recruiting and educating donors, keeping accurate donor records, collecting blood by trained staff, processing and testing blood in a state of the art laboratory, and storing and distributing blood.

Some people had asked if they could direct their donations TO Alexander.  Our hospital did not have any program like that, and we were told it wasn’t wise anyways, because if down the road he needed a donor bone marrow transplant, if the person donating the blood was a match, it could affect the bone marrow donation (I don’t know why – it is just what they told us!)  I follow one young girl that is fighting cancer and has a large following.  She is currently in need of constant platelet donations.  A lot of people want to help, but it seem like they only want to help HER.  That just makes me so mad!  They are willing to help this one girl – a stranger, but they don’t seem to want to help OTHERS!   You never know WHO you are going to help when you donate blood, but you can be sure that no matter what you are SAVING LIVES!!!

How does your donation help?

http://www.redcrossblood.org/learn-about-blood

There are always drives going on!  I have put two local ones at the end of this post.  Both are in memory of children that have died of STUPID cancer.   You can also go to http://www.redcrossblood.org/  to find a drive near you.

If you are like me, and are unable to donate, then please consider being a volunteer at a local drive, spreading the word, or maybe baking some treats for a local drive. (or bring packs of Oreo’s – the Red Cross has an in with the Keebler Elf, so they didn’t have any Oreo’s at the location Richard went to!

You have the power to SAVE lives!  Please consider helping!

mattty drive                                allie blood drive

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March 1, 2013

Tomorrow  is March 1st.

Alexander has been gone for 23 months
Alexander would be 3 years 8 months old

Julia is the exact same age Alexander was when he was diagnosed with STUPID cancer.

it is a strange time.  I have mentioned in a past post about having PTSD.  Most days it is okay, but some days it is really bad.  For a bit Julia seemed to be having trouble pooping.  I was freaking out, because that happened to Alexander (she now poops up to 3 times a day – not worried anymore there!)  There have been days that she hasn’t wanted to eat as much, and isn’t taking in as much from the bottle. Same thing happened with Alexander before he got sick.  Even little things can set me off.  I had bought Alexander some “name stickers” and put them on a bunch of his toys for fun. But, then some of his toys have a label that says “Alexander Whipple” that I made with my label maker.  The ONLY reason they are there was in case we forgot them at the hospital – so people would know they were ours, or to let them know they weren’t toys from the play room.  That little label can bring back a flood of memories.

We are in a whole new world with Julia.  She is starting to learn to crawl.  She can “lean” and almost stand by herself.  Alexander never did that.  She babbles a lot – Alexander babbled a little bit at one point, but then he never spoke. We have to learn what it is to have a “normal” child – a child whose life doesn’t revolve around the hospital, medications, shots, chemo, surgery, blood transfusions.  A child that can just GROW UP and be normal (yes, I know there is no “normal” in the world – but work with me here)

We took her to Floating Hospital in December to have an Ultrasound Scan.  We had not “worries” it was more of a “peace of mind for mommy and daddy” scan.  We had the same Tech that took care of Alexander.  She is fine.  No tumor.  But, even with that scan, I still worry.

When we had the recent snow storm, many of my angel mom friends were finding themselves missing their children in a special way, because of their love of the snow.  We took Alexander out when he was about 6 months old. He was not too impressed.  We bought him a winter coat when he was 18 months old – he wore it once.  He seemed to be happy, but he really only went out the one day into the snow.  He was in the hospital the rest of the time.  So, for me, I don’t have any special connections to the snow and Alexander.  Valentines day – well – he was 7.5 months old his first one, the second, he was sick in the hospital in the middle of his Bone Marrow Transplant.  Again, no strong connections to the day.

Some other Angel mom’s and I have started to try to go out once a month for dinner.  It has been very nice to be able to talk to those that get it.  Most of them, their children were older than Alexander when they died.  I find myself jealous of this in some ways because they had so much more time with their children.  Their children had friends – friends that will remember their children.  Friends that will make the world a better place because of their children.   Alexander really didn’t have this. We (Richard and I) had friends in the hospital, and Alexander would “interact”  with the other children (when he wasn’t  banished to his room because of a fever).  But outside of that, he didn’t have a chance to make friends.  And those other children were always older than he was.

But, while my friends had more time – many of their children fought against the cancer for YEARS, and despite all they went through they still died!  It just all SUCKS no matter how you look at it.

I was missing Alexander a lot the weekend of my birthday (I miss him ALL the time – just some days it is harder than others)  I was talking with a friend about it, and said maybe it was because it was my birthday. Then I thought about it some more….  in 2010, we went out for dinner the day before my birthday.  At dinner, Alexander wouldn’t eat his food, but I gave him a dinner roll to “play” with. He really enjoyed it. We took one home with us, and he had it while we ate cake.  That night, he threw up for the first time ever!  We thought we were pretty lucky that it had taken him 7.5 months to throw up!  21 days later, he was diagnosed with STUPID cancer.  Richard and I have been back to that restaurant, but I couldn’t go there again for a birthday.  In February 2011, Alexander was in the hospital in the middle of his bone marrow transplant process. He was on the “upswing” by then, but still,   we were in the hospital for my birthday (which only seems fair, since we were there for Richard’s birthday too)

Grief is a strange thing.  It creeps up on you when you least expect it.  I have friends now that are “years” in to this process – and yes it is a process.  Someone once told me “the tears never stop”.  Her daughter had been gone for 20 years.

Sleep is still a problem for me. (of course having an 8 month old doesn’t help!)  I have trouble still FALLING asleep.  I avoid going to bed sometimes.  I don’t know if it is the quiet or what – but I can’t get myself to go to bed.  But, once I do get there, and I am asleep – I never want to get up.  There are days I wish I could just stay there all day long and never face the world.  I know most people have those “days” but for me, it is most every day.   But, I have to get up – I have to take care of Julia – I have to go to face life.

I have been having a rough couple of weeks.  I use to be such a positive person – but this last week especially – I have been hating things in my life.

I hate that I know so much about childhood cancer – I wish I could go back to being oblivious like most of the world, and just go to the Scooper Bowl every year to “support” the Jimmy fund.

I hate that I now have more friends that have had a child die than those that don’t know such heart ache (but yet, I am so thankful that I DO have these new friends in my life!).

I hate the fact that Julia will never truly KNOW her big brother.  I hate that Alexander isn’t here to teach Julia things.

In my support group, The Compassionate Friends, they often say you don’t get OVER grief, you get THROUGH it.  It is a process.  A very long long process.  Some days are easier than others.  Some days you just want to crawl back into bed and never come out.

AlexanderJohn

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2 Years

One of my friends posted on facebook yesterday, that it was 2 years ago that her daughter got her stem cells back – “Day Zero” in Transplant speak.   A lot of our friends in the hospital had big things happen this week!  Cole had his debulking surgery.  It went well, they were able to remove a lot of the tumor.  He spent a few days in ICU, then the regular floor, then he went home.  Kerri Anne also had a big surgery – they had to take one of her kidneys.  She also was able to go home within a week.

On November 18th, our friends lost their son Durey. He was the first of our “circle” to die.  He was just over 1 year old.  He had a brain tumor that was discovered at I think 4 months or so.  He came in to the hospital about the same time we did.  He only made it home for a couple of days for his birthday.  I cried so hard when I found out.  I sensed that something was wrong, because I saw his own family gathered in the ICU waiting room.  I didn’t go in, or inquire more, because we were having our own rough day.

Alexander had his major surgery that day as well.  They were able to remove a large amount of the tumor.  We were very hopeful that day.  I remember it well.  After we left Alexander, we brought some treats to the OR staff, and to the Post Op Staff.  The Post Op staff knew him well.  We knew he wouldn’t be going there after this surgery (he would go right to the ICU) so we wanted to bring them a little something to thank them for always taking such good care of him.  They said they would check up on him even though they wouldn’t have him this time.

We were waiting on the 7th floor in the parent area (we had a patient room, but had to leave it because they needed it for another child and Alexander would be going to the ICU).   My mom was there with Richard and I for most of the day.  Different friends whose children were in the hospital that day sat and talked with us.  Several of the doctors, even those NOT on the Oncology rotation that day, came and talked to us.  A couple of the Medical Students had told us they were going to try to get into observe the surgery.  Everyone loved Alexander so much!!!!While he was in surgery, I went and met my friend for Coffee.   We had just gotten the call that they had officially “started” the surgery.  About 10 minutes later there was a “code red” (fire!) called in the Operating Room area!!  I didn’t even flinch – my friend was shocked by that.  When I talked to Richard about it later he said “well, I figured he didn’t spontaneously combust, or they would have called us”.  It was some much needed comic relief for us!

In the early afternoon Richard and I went to our Parent Support Group.  While we were there, the surgeon called to say they were just about done!  He came out and talked to us for a bit.  It was a while before we were able to see Alexander however.  We did finally get to go into the ICU (well, I pushed myself in – I was tired of waiting they were taking just too darn long!)   He was hooked up to a respirator and a lot of IV’s.  I was not as upset by the respirator as I thought I would be.  It was during this time that we got to meet the wonderful Respiratory Therapist team – we had not dealt with them before.  They were wonderful, talking to us about their role, and explaining the machine (which Alexander would spend 13 days on) .  It was a very rough ride.  At one point Alexander had a temperature of 106!  We never did figure out what it was from, it was very scary for a while for us.  He spent a total of 19 days in the ICU, and 45 days in the hospital during that admission.  He had  2 additional surgery’s, and MRI, a GI Scope, MIBG Scan. During the month of December he had 4 blood transfusions and 12 platelet transfusions. At one point there was a shortage of platelets.  Richard e-mailed the news stations.  One of them picked up our story, and Alexander became a “Star”.   http://boston.cbslocal.com/2010/12/20/baby-in-need-of-platelet-donations/

He was there for Thanksgiving and Christmas. It was a very difficult time for all of us.  Even though it was 2 years ago, all the emotions of that time still are very fresh in my mind.  I still cry thinking about Durey dieing.  I still remember the fear that we had when Alexander was so sick, and we wondered if we were going to lose him then.  It may be 2 years, but it still seems like yesterday

 

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Making Some NOISE!!!

In recent weeks I have been on the hunt for a job!  It is not going well at all!  I have tried for a few nursing jobs, but have not heard back from most of them.  I have looked into retail work, but they all want weekends, and because of Richards schedule, I can’t work on the weekend.  So, what is a girl to do!?

Well, I am going to MAKE SOME NOISE!!   Last December, we went into Boston, to see Alexander’s Picture on the National Angel Quilt It was a beautiful, yet sad site to see.  WAY to many lives lost to STUPID CANCER!

              

While we were there, we got to talking to the founder of the Make Some Noise Pediatric Cancer Research Foundation and his mother who is the Chairman of the foundation.   They were interested in starting a Boston Chapter.   Time marched on – we had Alexander’s anniversary – Julia was born!  Then, a two hour phone conversation last week led to the start of the process!!!

YIKES!  What I have I gotten myself into!?? Well, something AWESOME!  Make Some Noise was started by Malcom Sutherland-Foggio while he was fighting his own cancer at the age of 10 he saw the lack of funding given to pediatric cancer research and wanted to make a change!

As I have never done anything like this, I am going to need a LOT of help!  It can be BIG or SMALL – anything is wonderful!

One of the things I will need the most help with is Noise Night!  Noise Night is a fundraiser where we will – well, MAKE SOME NOISE!!!  I have a lot of ideas running around in my head for it!  If anyone has experience planning a fundraiser, please let me know!  If you would be able to help with Raffle or Auction Items, let me know!   The Foundation has set January 12th for Noise Night – it is an event that will happen in multiple locations.

You can reach me at:

nancy@makenoise4kids.org

Please watch this video to get an idea of why the need is so great – warning though – you might need tissues!

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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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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

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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

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