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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!


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:

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


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!


This shouldn’t be Normal

Julia was having a rough time this morning. One that only a 2 year old can understand!  There was nothing “wrong” with her, she wasn’t hurt or hungry. Her diaper was fine.  Maybe she was just tired?  Maybe she was upset because I was going upstairs and leaving her to play with all her toys?  I don’t know.  But what I do know, was that she was crying many tears, and was just really sad.  I thought about what it would be like if she was sick, really sick, like Alexander had been.  How hard it would have been to hear her say “no” to the shots, the lines, the chemo, the x-rays.

Alexander was only 8 months old when he was diagnosed.  The day he was diagnosed he recived an IV, and his arm was tapped to a board so the line wouldn’t come out.  He had monitors attached to him, and he had people poking at him day and night.  He would eventually get an NG tube shoved down his nose.  When the doctor first told us about it, he said “It only hurts for a minute”.  I said to him “oh, so you have had one?”  I think the doctor knew right then and there that we were not ones to be messed with or told some fake words of “comfort” to get us thru!  We wanted to know the truth when it came to what would happen to our son.

Alexander  never said no to anything we did to him. He never said why me mommy?  He didn’t say anything because he never talked.  Not one word – not even mama or dada.  Before he was diagnosed he did do some babbling, but after, it stopped.  We never knew why.  Maybe it was the tumor? Maybe it was the feeding tube?   I am sure he would have cried and screamed if he could have.

But, really, he just accepted things. He did fight me when I had to drop the NG tube, but other than that he really just did what needed to be done.  I actually find it sad really.  At one point, he was having x-rays 2-3 times a DAY to check on the status of fluid in his belly.  He had to sit on a little block, and I had to hold his hands up over his head.  He just let me do it.  He didn’t fight me.  He had multiple ultrasounds. Again, he didn’t fight it.   I had to give him daily shots after chemo.  He cried, but didn’t try to run away from it.   It was all just normal to him.  It was part of his life and he seemed to have learned to have accepted it.

As hard as it is to hear Julia and Elizabeth Cry and fight me when they are sad, or need medication, I will gladly take it.  Because to them, it is an unusual not normal thing.  I pray that they will NEVER have to have medicine, x-rays, or shots become “normal” to them.


Some thoughts….

We were off once again to Camp Sunshine last weekend!  (see my previous posts for more details about camp)

During the Moms only discussion group, the leader pointed something out – that is just how MUCH we have been thru in the last 3 years.

1.  Alexander Died

2.  Julia was born

3.  Elizabeth was born (and my friend pointed out to the group how Julia broke he foot when she was just two weeks old and still in the hospital)

4.  Elizabeth had open heart surgery at 6 weeks old

Whew!  Any ONE of those things would be a lot to handle – and I have had ALL of them in just three years.  How I have done it?!?!  Honestly I have no clue at times!

There are many days, I wish I could just stay in bed all day and ignore the world.  I love my girls, but there are many days, I wish I didn’t have to take care of them – that I could just crawl into a hole and be alone.   But, on the other hand, the do give me a reason to get out of bed each day!  It is wonderful to see them smile and being happy (although I am not so sure about the temper tantrums that Julia is getting so good at throwing!)

I have written before about my love/hate relationship with technology  (

Right about now I am in one of the “hate” modes.  Facebook can be wonderful – but it can be very hard at times for those of us living without our children.  Kids are starting to finish school for the summer, and September will be here before we know it, so there have been a LOT of postings about school.

I have been seeing a lot of “Oh my baby is going to kindergarten!  Oh, why does he/she have to grow up so fast!?”   That one has been the hardest for me, because I should be saying that about Alexander.  He would be going to kindergarten in the fall if he were alive.  (and I happen to have a LOT of friends whose children are going off to kindergarten in the fall!)  Deep down I know that my friends are just being poetic about life and how fast it can go sometimes.  I am sure had I not lost Alexander, I would have been doing the same thing.

But for me, right now, I am just waiting for Julia makes it to her SECOND birthday.  From there I will be so HAPPY when she reaches all her milestones that she is “suppose” to be doing!



Missing Alexander

I have been down the last couple of days – missing Alexander. It isn’t that I don’t ALWAYS miss him, but some days and weeks are harder than others.

This weekend we went to a wedding in NH.  It was very nice, but in the car there and back, I kept looking back at Julia and just wishing Alexander was there.  We didn’t go to Story Land or Santa’s Village, because I think Julia is just a little too young for it, but how I wish we could have been there with Alexander AND Julia!  I know he would have loved it, and with him there I would have been okay having Julia there too.

We were out to dinner, and they had a kids menu with crayons.  I showed them to Julia and she seemed pretty fascinated by the crayons, but of course once I gave them to her she ate them!  Alexander never got to use crayons – he was too little. Maybe he could have near the end – but we never did even try them.  I don’t know why.

Julia loves the swings at the park.  Alexander never went on the Swing. He was sick at 8 months old, and it was still winter.  Then, he was in the hospital for most of the summer – then he was on TPN 24 hours a day, so he couldn’t really swing with that, then Winter again, then he was gone.  I am sad for him that he didn’t get to have that fun activity in his life.  He missed out on so much.

STUPID cancer robs so many children of the simplest things in life – it SUCKS!!!!



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!

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?

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  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


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.



New Year, New Chapter

Tomorrow is New Year’s Eve. A time for the year to end, and for a new year to start. Many people make resolution this day – decide to go to the gym more often, diet etc. Many people do not keep those resolutions.

For us, 2013 will be the year we celebrate Julia’s first birthday.  Richard and I will have our 7th Wedding Anniversary. I will turn (gasp!) 40, and, we will start living more of our lives with OUT Alexander than we had WITH him. Yes, on January 1, 2013 it will be 21 months since our beautiful boy took his last breath. It is hard to believe it has been that long. It still seems like yesterday in many ways.

In these 21 months we have said good bye to several of Alexander’s friends – some we knew well, some just in passing at the clinic. All lives cut too short. My friend Rosanne also died last year after a 5 year fight with stupid cancer. I went to 2 funerals for two men that died unexpectedly, one while participating in a charity bike race! I went to the funeral for a friend whose son was born into the arms of Jesus, never even taking his first breath outside of his mothers womb.

It has not been an easy 21 months for us in a lot of ways. The sadness I feel on many days is difficult to describe – only those that have lived the horror that we have gone through can understand.

Tonight I was texting with a friend (yes, I have become a text chatter like a crazy teenager!) and I was mentioning what I just said – how we will start to live longer without Alexander than we did with him. Ever the positive person (and she is one person that DOES get it – her precious girl died the month before Alexander), she helped me to turn my sadness around – to look at this new year as a new chapter in the Julia files. I also think, I need to look at it in the positive that at least we HAD Alexander for 21 months! The first child that we knew from the hospital that died lived just over 1 year. Another mom I have since met, lost her daughter who was younger than Alexander. Another mom I met only had her son for 3 days (he did not die from cancer – doesn’t matter, it all still sucks) .

So my resolution for the new year, is to try to focus more on the POSITIVE. To remember all the GOOD times we had with Alexander. And despite all the STUPID CANCER stuff, we did have a lot of good times! The last month we had with him was wonderful! I also find myself the happiest when I am helping others – reaching out to other families that are going through stupid cancer things, doing things for them, raising money and awareness for childhood cancer (and off course making Pillow Cases!)

As you think about a resolution you might want to make, consider not what you can do to better YOURSELF, but what you can do for OTHERS – those around you – your friends, you family, strangers in need.

And in the last words of Cole, whose 1 year Angel Anniversary is coming up in January,




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:

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



During Alexander’s Treatment, I never really got “angry”.  However, this week – I have been feeling a lot of anger. I don’t know where it is coming from – maybe from all the posts I have been seeing on Facebook about Childhood Cancer Awareness Month.  It isn’t a mad angry, more of a sad angry.


I am angry that:

  1. Alexander Died.
  1. That all but one of the kids we knew or knew of with neuroblastoma have either died or had a relapse
  1. That researchers are working on new ways to target neuroblastoma, but that it is too late for my Alexander
  1. That there it takes MILLIONS of dollars to run for President – (I have seen $20,000 a plate dinners !), but really that money could go for so many BETTER things!  If only we could have a $20,000 a plate dinner for pediatric cancer research!
  1. That I have made a ton of new friends this year – friends I should have NEVER met, but because of STUPID CANCER and because Alexander died, I have met them.  (However, I will also add that I am VERY glad I had these friends during Alexander’s treatment and that I have new friends to support me on the journey on the “other side” of cancer)
  1. That even those kids that make it into Remission, may end up with many lifelong side effects.  Hearing Loss, infertility, damage to organs and other body functions, risks of SECONDARY cancers!
  1. That Alexander died.




To help with all this, I do try to do things that are POSITIVE!  I like to give back to the unit that Alexander spent most of his time on.  I have done Easter Baskets and Christmas Stockings as well as some other things. It is fun buying them for the kids and imagining their reactions.


I would someday like to be a Parent Advocate in a hospital, to help those families going through what we went through.  I want to be able to teach other parents to be a “Mean Mommy (or daddy)” and to stand up for their children when needed.  Too often parents will look to a doctor as a god, and just listen because the “Doctor” said so.  One time I had a resident trying to tell me that Alexander’s heart rate was “okay”, and it was low from the medication.  I knew that he was wrong – it was normal for a kid is age, but not for my Alexander!  Thankfully, the nurse knew Alexander well, and helped to get a more senior doctor involved.




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