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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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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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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.

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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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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,

SMILE – BE HAPPY!!!!!!

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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!

3 Comments »

“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 »

Giving Poison to heal.

There was a great article today in the Globe.  It focused on one of children we knew – Alexander’s “girlfriend”. It talks about the stress families go through as they make choices to help heal, hopefully cure their children.

http://www.boston.com/lifestyle/health/articles/2011/05/09/as_a_child_undergoes_treatments_for_a_serious_illness_parents_may_suffer_too/?sudsredirect=true

When Alexander first got sick, someone asked us, “So what exactly is Chemotherapy”.  I resisted the urge to smack this person for asking such a question to us – I mean, couldn’t they have looked it up themselves? A textbook answer would have been this (from about.com)

Definition: Chemotherapy is a form of cancer treatment that involves taking one or more of a type of drug that interferes with the DNA (genes) of fast-growing cells. These drugs are further subdivided into specific classes such as alkylating agents, antimetabolites, anthracyclines, and topoisomerase inhibitors.

My answer:  “It is Poison”.   We choose to give our son poison – poison that we hoped would kill the cancer cells, shrink the tumor and get us back on track to the life we planned.   We had to sign consents for everything – and more often than not, under “side effects” one of them was death.  Death?!?!  You mean to tell me, if I DON’T give my child this treatment, he could die, but if I do give it he could die?  Um…hello!?!?   What kind of choice is that?   Not an easy one at all.  We did choose to give him treatments.  but what if we hadn’t?

Recently in the news was the conviction of a mother that did that – she choose NOT to giver her child the treatments the doctors told her could save his life.  Of course none of the news stories tell the whole story.  Why did she stop the treatments?  Had she reached her wits end in seeing how sick they made him, loosing hope that he would truly get better?  Where was the help for HER, to give these treatments to her son.  Some may say, “just MAKE him take it” – well , that is easier said than done.  Alexander was too little to fight us, and he had his feeding tube which made it so much easier to give him his medications.  But just the SMELL of some of these medications made me gag – I can’t imagine having to take them every day.  At one point, he was taking them orally, but kept throwing them up, so I had to put the feeding tube back in just so I could give him his medications.  That was hard for me.  I learned how to do that, so that I didn’t have to keep taking him to the ER to have it done if it came out.  I didn’t want to learn that – what mother does? But, it was something that I choose to do to help him.  There were times that I had to give him shots in the leg every day.  I hated that – having to give my child pain!  Again, because of his age, he couldn’t really “fight” me – although he tried!  Some of the other children who are older, will kick, scream, say “I hate you, you are bad”.  There were many a time I wanted to NOT give him his medications or treatments because of the reactions he would have.  Sometimes, I was actually GLAD we were in the hospital, because then the nurses would do the “bad stuff” and I wouldn’t have to.

Since I do not know the whole story – I can not judge that mom.  I can only pray for her and the life she now has to face without her son.  I am sure she did not come to her decision lightly.  I do question where the doctors were in her situation – how did they not know until it was to late that he wasn’t getting his treatments?  And couldn’t they see the stress she was under, and how she would need some help?

Cancer sucks – the treatment sucks – there are no easy answers.

6 Comments »

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