thecookiegal

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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:

http://thecookiegal.wordpress.com/2013/05/28/camp-sunshine/

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

http://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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Dear Alexander

5 Years ago, you and I were spending our last night together.  You would be born the next day, and I would have to share you with Daddy and the rest of the world.  But for one last night you were all mine.   I don’t remember if I slept well that night or not.  But, I do remember calling to find out if they had room for me at the hospital, and having to call back after “change of shift” time.   Daddy made me scrambled eggs and toast for breakfast, and we headed into the hospital at about 8am.   They set me up in a room, and got the medicine started that was suppose to help you come out faster.  We played cards, listed to Bill Cosby’s thoughts on Natural Childbirth, watched “My Cousin Vinny” and I got my lovely epidural.   Nana came to hang out with us in the hospital too, although she spent a lot of the time in the waiting room.   At about 4pm, the nurse told me I could start to push, and I would be pushing for “about 2 hours”.  Well, 2 hours came and went and you had not arrived yet!  Our first lesson, that you would not do what you were “suppose” to do!  At 7pm I got a new nurse. She was wonderful (she would later help me with your sister Julia too!)   I was getting very tired, and just wanted to meet you!!  I got sick a lot, and they kept putting me in crazy positions, and one of the male doctors told me I wasn’t “being very effective” with my pushing!!.   My regular Doctor, had to go home when her shift ended, but she told them to call her when I was really close!  She came back a bit after 8pm.  Finally, at 8:49pm you arrived into the world!!!   You did NOT come out crying however!!   Mommy was a bit scared, but I kept telling myself that I heard your heart beat on the monitor, so you were okay.   They cleaned you up, and got you talking and then I finally got to hold you on the outside!!
Daddy had his turn next, and then Nana came in too!!

While, I had to wait ALL DAY for you to arrive, it ended up working out great – and I got an extra day in the hospital!   I know you spent a LOT of time in the hospital and you might not think that is a good thing, but it was!

So he we are 5 years later.  And we are without you.   You are living with God now.  There are so many things I wonder!  I wonder what kind of games you would be playing, if you would like sports, what kind of big brother you would be.  What you would look like.  And right now, I have been mostly wondering if you would be exciting about starting kindergarten in the fall.   I imagine you would be excited. I think you would have liked school and liked learning new things.

I wish we were having a birthday party for you tomorrow.   5 is an exciting age to be.   But, since you aren’t here for that, we gave another 5 year old boy a birthday party. (http://www.birthdaywishes.org/)   I think you would have like that.  We bought him Legos and cars.   You liked Legos (well, yours were BIG Mega Blocks!) and I don’t remember if you had any cars you played with, but I am sure you would have liked them.

I miss you so much Alexander!  You were the one that made me a mommy.  I will always be your mommy, and I will always miss you!!

Love,

Mommy

Holding Alexander for the First time

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2 Years Old

When we wake up tomorrow, we will have a two-year old.   Wow 2.  As I mentioned in a previous post, Julia became older than Alexander on March 26.(  http://thecookiegal.wordpress.com/2014/03/09/time-and-milestones/)  and now she will be 2.

I didn’t plan a party at all for her this year. She had a lovely little party last year.  But this year, I don’t know why – I just didn’t plan one.  We had things planned on different days during this weekend as well as last weekend.  And there just didn’t seem like a good “time” to have one.  I wanted to get her a Curious George themed party, because she really likes to watch that show.  I had to go online to buy things, as none of the party stores near me carried them (which I find very odd)  I checked with a couple of bakeries in the supermarkets and they didn’t have a Curious George cake, although they did say I could bring a picture in and they would put it on for me, but that just wasn’t what I wanted.    I ended up making my own cake, which came out pretty good I think!

We go to a Down syndrome Play group (http://www.morningtravelers.org/) and I knew there would be a lot of kids there, so I decided to bring the cake to that.  Since Julia is so little, I knew she wouldn’t realize it isn’t a party JUST for her (although I imagine when she is a crazy teenager she will bring it up more than once!) so I figured that would be okay.

But, then I did start to think about just WHY I didn’t have a party for her.  Was it really because we were too busy to have one? Or was it because Alexander never had a second birthday party.   Or because he would have been 5 in a week?  I don’t know….maybe……

Now, what do I do with a 2-year-old?!!?  She is already perfecting the temper tantrum!  And we are finding it hard to get her to eat anything beyond plain pasta.  (I don’t want to get her into the Kraft Mac and Cheese habit that so many kids have!!)  She does eat fruit, so at least that is healthy right???

We do enjoy watching her grow and learn, and to be silly.   But for me at least, it is still so hard to see her as the oldest child we have, when really she is a middle child.

I am sure I have more thoughts on this….but that is all that is coming out right now…..

 

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Some thoughts….

We were off once again to Camp Sunshine last weekend!  (see my previous posts for more details about camp)
http://thecookiegal.wordpress.com/2013/05/28/camp-sunshine/

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

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  (http://thecookiegal.wordpress.com/2011/06/18/a-love-hate-relaltionship-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!

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Time and Milestones

Yesterday, was the 4th anniversary of the day we heard those horrible words “I am sorry but….”   The day that the world of STUPID childhood cancer entered our lives.  Much of the day is a blur, but there are some images that are still so vivid.  Meeting the oncologist for the first time, walking up to the Bone Marrow Transplant Unit  the place Alexander would spent most of the next year.  Watching him being sedated for his first of many MRI’s. Having Richard break down in tears as we left him in the MRI.   Yesterday we participated in a Blood Drive in memory of Alexander and several other children whose lives were cut short by STUPID cancer.  It is run by another couple whose Daughter, Alexandra, died 6 years ago.  163 pints of blood were collected.  This couple organizes 2 blood drives a year, and so far they have helped collect 1,912 pints of blood!  It seemed appropriate that on the anniversary of Alexanders diagnosis, we would be at a blood drive, as he received over 35 BLOOD transfusions ( I may have lost count of some of them!) and over 58 Platelet Transfusions.

Last night we attended a fundraiser called Cure Me I’m Irish.  It is run by a group called BeatNB  Its purpose is to raise money for Neuroblastoma Research. Thanks to this group, as well as some other PARENT led groups, they have been able to fund a trial for a new drug for neuroblastoma. This drug has been having some excellent results.  The doctor leading the research was there and spoke to some of us prior to the event.  Thanks to these groups, they have been able to open up the next phase of the study in just 1.5 MONTHS, rather than 1.5+ YEARS.  It is sad really, they only needed about $200,000.  Sure, to you and me, that is a heck of a lot of money. But if you think about it – that is also about 5 seconds work of a commercial for the Super Bowl.   Really not a lot of money then.   Again, it seemed only appropriate that on the anniversary, we would be at a fundraiser for the very disease that took his beautiful life.

April 1 will mark 3 years since we said goodbye to Alexander.  Last year we went away for a few days.  We were thinking about doing that again this year, but now I am not so sure (partly because packing up us and two little ones is a LOT of work, plus all the things we have to bring with us!!)  So what we will do we do not know yet.  But as in the past, the time leading up to that day is becoming very difficult.  The day itself has not been too bad the last two years. But each year is different.

Our Daughter Julia was born 1 week before what would have been Alexander’s 3rd birthday.  So, as she has grown up we have seen where she was at the same time Alexander was.  I found it very hard to truly “enjoy” her until March 8th of last year.  Once she reached the age he was when he was diagnosed, I was able to breath, relax and enjoy her.  That was also when I started to learn how to be a parent to a HEALTHY child.  Our lives were not centered around visits to the hospital, she had regular visits to the pediatricians office.  Alexander never went back after his 6 months check up, so we had no clue what to expect.  She had a first birthday that was NOT followed by 27 days in the hospital (including time in the PICU  She learned to walk,  and talk. She has a ways to go with the talking, but I am sure once she gets it she won’t stop!  We are having fun watching her play make believe with her dolls and her kitchen.  We take her to the playground in the nice weather, and we recently found an indoor play place that she loves.  She loves to climb and go down the slide.  She is learning to eat with a fork and spoon and doing better every day feeding herself. She is no longer using a bottle, and has the straw down pat (when she isn’t pulling it out of course!)  And on March 26th, she will be 21 months 4 days old. She will be older than Alexander ever was.

I am not really sure how to feel about this.  I am so sad that Alexander never got to be any older.  Sad that he missed out on all these things Julia has learned. His life was cut short in a million different ways.   I have several friends whose children are now turning 5, the age he would have been this year.  Starting to make plans for kindergarten.  So many milestones that he missed out on.  But, I know I can’t dwell on that.  I have to be thankful for those 21 months 3 days that we DID have with him.  While he was so sick, he had so much to give to everyone he encountered. There isn’t a week that goes by that someone doesn’t post an Oreo Cookie story or recipe to my Facebook page.  It makes me smile every time I see them, because I know he is being thought about and not forgotten.

As we hit this final “milestone” with the age comparison between Alexander and Julia, I know it will be sad in some ways.  But, in others, it makes us smile to see all the wonderful things Julia is doing and learning each day.

AlexanderJohn

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What if you were hit by a bus?

Often when I hear people say, they are going to “put off” an activity until later, or make a huge financial decision (ie buying a house), I will ask them “What if you were hit by a bus tomorrow”?  I usually get stares of course, but what I am asking them, is to really THINK about the choice they are making.  Can they REALLY afford that item – do they have a “back up” plan, if they are “hit by a bus”.  What if you put that activity, trip visit off, and you are hit by a bus, and you can’t do what you had “planned” on doing?

Now you may be saying “well, I will just look both ways before crossing the street”.   Good idea of course, but what if the “bus” is being driven by a drunk driver? Or it is a sudden heart attack? Or it is STUPID cancer?

We were hit by a bus on March 8, 2010, when Alexander was diagnosed with STUPID cancer.  That was by far the last thing on our minds when we sat in that ER.  But, there we were, hearing those words “I am sorry but…”  With in the last 2 years, I have gone to 4 funerals or services for people who died unexpectedly.  They were fine one day, and the next they were gone. Their families forever changed.  I remember once I thought I saw a friends mom at Panera – I thought about going to say hello, but she with with a group of ladies, and I didn’t want to interrupt.  I thought about stopping by to visit her at home, but I never did.  She died suddenly while playing tennis.  How I wish I had stopped to say hello to her!

I have heard many people say, they “can’t” take time for family or friends because they are too busy with work.  These people are not brain surgeons, they are ordinary people, doing ordinary jobs.  They are working so hard, and are more often than not underappreciated by their workplace, yet, they just keep working hard, and giving up their own lives and familes for this “job”.  I know people HAVE to work, because you have to afford to live.  But MANY people COULD cut back on their lifestyles, and work less and enjoy their FAMILY more.  Some people, just don’t know how to say NO when they are asked to work extra – they will just go above and beyond, and really get no reward for their efforts.

I am not saying that you should just quit your job, and live like today is your last day, because that would be foolish. But, I am asking are you READY for this to be your last day?  Consider these things:

1.  Do you have a Will?  EVERYONE needs a will!!  If you don’t have one, that the government will get your assets first!

http://www.gosselinlaw.com/FAQ/Probate-Law.shtml

If someone dies without a will, what happens?

  • When a person dies without a will, the Probate court must decide how his or her assets are to be distributed. The distribution of property is governed by Massachusetts law, under which the decedent’s next of kin usually inherit the property. The major pitfalls of dying without a will are:
    • the decedent’s personal wishes regarding who receives particular property may not be fulfilled
    • the decedent did not take maximum advantage of tax-saving mechanisms.

    The same results can apply when someone has left an invalid will. In order to probate the estate of a relative who died intestate, you must generally obtain authority from the Probate Court to distribute the decedent’s property, depending on the type of property left in the estate.

see also:

http://www.nolo.com/legal-encyclopedia/intestate-succession-massachusetts.html

2.  Who will take your children if you were to die?   Maybe you want your sister, but you would NEVER want your brother.  If both parents were to die, a judge can decide what will happen to your children. Be sure to have it in WRITING.

3.  LIFE INSURANCE – this is a NEED and not a WANT.  Unless you have medical issues, getting term life insurance is not that expensive.  You may have it with your work, but you need to have it OUTSIDE of your work too.  Again, getting “hit by the getting fired bus”.  Term is the ONLY way to go – whole life is not worth it!
See this page for an explanation :  http://www.daveramsey.com/article/the-truth-about-life-insurance/

You need to also have Life Insurance if you are a Stay at Home Parent.  If you were to die, the other parent would need to hire a cook, a nanny, a maid, a driver and a nurse.

4.  Do you have an emergency fund of 3-8 months of living expenses?   When you are hit by that bus, and can’t work, you will still have those bills to pay!  You won’t build it up overnight of course, but you can do it!

http://www.daveramsey.com/article/build-an-emergency-fund-fast/lifeandmoney_saving/

5.  If you are in debt GET OUT by taking baby steps!

http://www.daveramsey.com/article/recession-proof-yourself/lifeandmoney_economy/

6.  Get on a BUDGET!!!

http://www.daveramsey.com/specials/mytmmo-gazelle-budget/

(can you tell I am a Dave Ramsey Fan?)

Okay – enough of my rant for tonight!  Look both ways before crossing the street, be ready to be hit by a busy, ENJOY your life, and ALWAYS put your FAMILY first!

I will end with the final words of Cole, a boy we knew from the hospital -

SMILE – BE HAPPY!!!!!! 

smile1

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Happy New Year

Another year is upon us.   At this time, many people reflect on the year that has gone by, and make plans and promises for the year ahead.

A friend recently asked, “why does it take December for us as mankind to be collectively joyful and to act the way we are supposed to to our fellow man?”  I replied that I felt the same way with people putting out daily things they are Thankful for during the month of November.  Are they not thankful other times of year? 

I know that times can be tough for many people. Just reflecting on what my family has been through in the last 3 years is more than some people get in a lifetime.   However, despite all those things, I have tried to find things to be thankful about. When Alexander was in treatment, I was thankful we didn’t have other children to worry about at home.  We could give all of our time and attention to him.  I was thankful that Richard had a job that allowed him to work only weekends so I could have breaks from the hospital during the week.  I was thankful that we did not have to worry about losing our home.  And looking back now, I can even find things to be thankful about on the day he died.  It was a horrible day yes.  But Richard and I were able to be with him and hold him as he went to be with the Angels.  My mom and Richard’s mom were also able to be with him in his last moments.  Many families do not have the chance to be with their child when he/she dies.  They can’t be there to say goodbye.  We were able to do that.

One thing I am going to TRY to do in the new year is to move on.  There were some people that just weren’t there for us the way I would have wanted them to be and I am still very angry about that.  I am going to work on moving on from that anger, forgive, accept that, that is how they are and they will not change.  I have to focus more on those that WERE there for us, and be thankful for that.

So my challenge for all of you in this new year, is to try to find something to be THANKFUL for every day!  Years ago, Oprah had encouraged people to write out a “Grateful Journal”.  You can find nice Journals or even just a note-book many places – even the Dollar Tree!  Some days you will be able to fill up a whole page with things you are Thankful for.  Other days, it may be a struggle to find just one. But even if it is just “I was able to get out of bed and face the day” then write that.  Maybe you could have your family say one thing they are Thankful for each night at dinner.

Wishing you and your family a very happy 2014.

 

 

 

 

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A Time to Give

Last week we had Black Friday.  Tomorrow is Cyber Monday.  Lots of ways to spend your money on STUFF.

But wait – save some of that money tomorrow, for GIVING TUESDAY!!!!

Many people choose the end of the year to make their charitable donations.  That is great, but there is always a need ALL year long. Some people say they can’t give, because of how much they are spending on Christmas Presents.  To those I would ask – do you or your loved ones really need so much STUFF?  I know I don’t.  This year I turned 40, and I asked that from here on out I do not want Birthday Presents – but rather have people make a donation in my name.  There are so many out there that need so much more than I do.

I wrote a blog previously on being Generous.  I have some other groups I would like to add to the list I had put in that post:

https://www.floatinghospital.org/Giving-Support/Give/Special-Giving-Opportunities.aspx

The Alexander the Great Fund for Family Support in Pediatric Hematology/Oncology

The Alexander the Great Fund for Family Support was established by a grandmother in tribute to her grandson Alexander John Whipple, a pediatric cancer patient who spent much of his life at Floating Hospital for Children. Alexander’s grandmother recognized that while extended family members, such as grandparents, aunts/uncles and close friends, form a vital support system for hospitalized children and their parents, expenses relating to ongoing hospital visits can be a financial burden. The fund provides assistance to extended family members for out-of-pocket expenses incurred while visiting hospitalized pediatric cancer patients, including transportation, parking and meals.

Sophia’s Families First Fund

This fund was established by Diane Donnarumma, Sophia’s mother, in gratitude for Sophia’s care as a patient in the Floating Hospital’s Children’s Cancer Center. Recognizing the many non-medical expenses that patients and their families face, Diane set up this fund to provide assistance to other families with children being treated for cancer.

also at:  http://sophiasfund.com/donate.html     (check out Sophia’s Friends!)

Fitzgerald Cancer Fund

Helps families of Children with Neuroblastoma

http://www.fitzgeraldcancerfund.org/

Beat NB

Raising funds for Neuroblastoma Research

http://beatnb.org/

Camp Sunshine

http://campsunshine.com/

A camp for children fighting STUPID cancer and their families.  They also have two bereavement weekends for those that lost their children.

Hole in the Wall Gang Camp

http://www.holeinthewallgang.org/Page.aspx?pid=471

One of my cousins children have been able to go to this camp several times, and they tell me it is a wonderful experience.  Some of the volunteers came to Floating Hospital and hung out with the kids there.  One of them, did this for Alexander on his window when he was in for his bone marrow transplant.  They would do this for kids that were going to be in the hospital for a long stay.

IMG_0071

Kai’s Village

http://kaisvillage.org/

I met Kai’s mom at a conference this Spring.  We were assigned to our lunch table based on the groups we were with.  It just happened that at this table, 3 of us lost children to STUPID cancer, and one person had a child that beat it!

Community based support for families facing the challenges of disability and serious illness.
We bring the village to you.
Mission
Kai’s Village brings the Village to those who need it.

Our goal is support members of our community who are affected by disabilities and serious illness by improving the quality of life for them and their families. Kai’s Village will help with meals, household tasks, childcare, and other stresses that families caring for a loved one should not have to worry about.

Make Some Noise: Pediatric Cancer Research Foundation

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

This group was started by a 12 year who was fighting STUPID cancer and realized there needed to be more funding.   I helped start a Boston Chapter.  While I resigned as President because I was pregnant (and it is sadly in limbo right now) it is still a wonderful group!  While I think research is of course important, if you give to this group, please consider directing funds to the Angel Quilt.  The Angel Quilt is a beautiful yet very sad display of Children that have died from STUPID cancer.  They took the quilt on a cross country tour this summer, and they would like it to be in more places.  We were able to see it 2 years ago when it came to Boston.  It has since grown, and includes many of my friends children now.

alexander's spot Angel Quilt us with Alexander and Malcom - founder of the group

 

Flashes of Hope

http://www.flashesofhope.org/

This is a group we were able to use twice. They come to the hospital and take photos of kids fighting STUPID cancer.  They bring someone to do hair and make up for mom.  They take beautiful professional photos, and then print up two 8×10, and the rest in 4×6, and give them to the families for FREE

 

Alexandren Whipple Alexandren Whipple Alexander Whipple 17

Another idea I have for you.   Girl Scout Cookie time is just around the corner.  It is funny how it happens during the New Year when people are trying to “eat healthier” and they arrive during Lent, when people have given up sweets!  Well, here is an idea for you!  Buy a few boxes of cookies, then find some place to DONATE them to.  My friend in Michigan has done collections for the local homeless shelter, and the Children’s hospital.  My local friend offered that option, and then donated them to the Oncology Unit at Floating Hospital.  I brought a bunch to the Fisher House, a place for Military to stay while they are receiving treatments.  There are many places I am sure you can think of that would love cookies!

Speaking of cookies!  Many people have a “Cookie Swap” during the holidays.  Make yours COUNT this year!  Cookies for Kids Cancer is another pediartic cancer research foundation  GLAD is going to donate up to $25,000 for bake sales and other cookie events held!  Each cookie at a cookie swap is worth $1 !!  http://blog.cookiesforkidscancer.org/2013/11/the-glad-match-is-back/

http://register.cookiesforkidscancer.org/

I am sure I could go on and on – but I will leave you with these for now to ponder!

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Halloween and PTSD

A lot of my Angel Mom friends have been posting this week about the stress around Halloween coming up this week.  It is a hard time for them, because it was their child’s favorite Holiday and they wonder what they might have been.  Or as one of my friends wrote on her blog “She could have been anything she wanted. 3 is the perfect age to be anything you want. If only she could have been 3.

Because Alexander was so young, we did not take him out for Halloween, although he did have some costumes.

His First Halloween

IMG_0021  halloween 2009

 

 

Alexander was actually HOME from the hospital on Halloween!  We did still put him in a costume, and took him to two neighbors houses to say hello

 

 

DSCN0846

 

The next day he had an MRI – so we thought we would “help” them find everything they needed.  Richard thought it would be funny to put the bucket on his head.  He was very good at balancing it!

 

pre-mri 11.1

 

Some of my (cancer family) friends talk about how they suffer from PTSD.  I have written about that in the past too.  http://thecookiegal.wordpress.com/2012/01/31/ptsd/

It is a terrible thing – you have a child that was so sick, then died – you worry about your other children getting sick and dying also. One of my friends, whose son was a twin – had a really hard time last week, because her surviving son was sick and was showing some of the same “signs” as her son that had died!  I know that even with Julia I have had some issues worrying about her!

About a month ago, she fell and broke her leg!  I was coming in the front door, holding the door and a package, and she decided to take a step out the door!  We took her to the doctor and had an x-ray.  The next day she had to get a cast.  We went to the Floating Hospital for Children where Alexander was treated.  Orthopedics was one of the few departments that Alexander did NOT see!  I choose that hospital over one of the other Children’s hospital, because it is familiar to us.  I don’t have issues going back there as they took such wonderful care of Alexander (although I do wonder, if he had died there if I would have issues)   She is getting her cast off on Friday, November 1st.  She will need an x-ray. I thought about putting her in the skeleton costume for fun.  Then I realized that it was 3 years ago, on November 1st, that we took Alexander in the same costume to the hospital for his MRI.  Yup….there comes the PTSD.

 

 

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