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1 Year Later from Mommy’s View

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

First Oreo Cookie


All Done!

Birthday Oreo

Why Eat Cake when I can have a Yummy Oreoe?

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

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The Final Video

Video from a Year ago today.  At one point in the day, I was holding Alexander and said “I should put him down for a nap” then I thought “well, why? he has his surgery tomorrow, and I might not be able to hold him for a long time after that”  But, he was eventually getting tired so I did put him down.  As you can see in the video, he was clearly not going to Nap!  My mom kept taking short videos of him.  I was upset at first (because she wasn’t letting him nap!) but now I am so grateful that she did!  Maybe he knew something we did not know, and he gave us a beautiful joy filled day!   As we were reading to him later that night, he was fighting to keep his eyes open!  He finally went to sleep some time after 7:30pm which was past his normal bedtime.

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1 Year Later from Daddy’s View

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

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

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

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

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

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

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

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

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

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

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

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

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

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Dear Alexander,

(written mostly by Daddy)

Dear Alexander,

On June 29th 2009 you graced our lives with your smiles, laughter, and curiosity.

You played with your cat Max, enjoyed walks with me and watched cartoons with mommy while you snuggled together.  You played the baby Jesus at saint E’s.

Then you became sick. Even with your Sickness, you smiled, flirted with the nurses and confused the doctors with your uniqueness. You inspired mommy to write about your daily life and showed the world how strong you were in adversity.

Your last month of life showed us how life should be lived by visiting the zoo, and laughing at the wonders of the popcorn popping.

We were there when you died on April 1, 2011. We held you in our arms, we sang you a song and said your nightly prayers and held your hand. We blew you bubbles.  We were there when you started a new journey without us.

We know that you look down on us.

We cried a lot over the past year at all of the lost moments we will never have because of your death. We slowly heal the large gap in our lives. We know that you are watching over us with the butterflies you send and the places we end up in. We hope that you get the bubbles that we send up to you when we visit your grave. We hope that that you helped God pick a great soul for us for your baby brother or sister as our journey here on earth continues.

We miss you and think of you ever day.

Love Daddy & Mommy

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Inspiring? Amazing?

Over the past two years, and even more so this past year, Richard and I have often been told how “amazing” we are, how “inspiring” we are.   People have said to us “I don’t know how you do it” and “I don’t think I could do it”.

We are just parents whose baby got cancer and then sadly died 13 months later.   Today, there will be 47 other sets of parents that find out that their child has cancer.  7 sets of parents will enter into the world of being a bereaved mom and dad because of cancer.

We are not unique in our plight.  People look at me and say that I am “strong” and “amazing” because I get up each day.  However, that is not always an easy task for me.  Sure, I do get out of bed – often though it is not until about 10am.  Even then, it is a chore, and usually just because I am hungry, and right now, if I wait to long in my hunger, the nausea kicks in!   I don’t shower right away – I eat my breakfast, read the paper, and then often retreat to the sofa or the computer for a while.  I was working, but that was really hard for me.  I am not sure if it was the job, the nausea, the difficulty of having to fully function each day, or a combination of all of the above.  Most days I would rather just stay in bed and not face the world at all.

To me the truly inspiring families are those with other children.  They have to “choose” between the sick child and the well child.  How do you make such a choice?  Either way, someone will suffer.  The well children, will be missing their parents (and the sibling that is sick).  The sick child needs the parents in so many ways.  If a death should occur, then the children that are left behind, have their own sadness to deal with.  But, they have to contend with parents, that are grieving the loss of a child.  The parents have to some how find a way, to live for the children that are here, but yet, still live with the heartache they will feel every day for the rest of their lives.

I have always been a giving person, and I do find great joy in shopping for things to give back to the hospital.  Toys, sheets, press and seal, Bubbles.   Each Holiday I have been trying to get a little something for the kids that may have to be stuck in the hospital, as Alexander was.  Being in the hospital is never a good time, and the holidays seem that much worse.  I try to bring a little bit of sunshine to the kids and their families, as was often done for us.   One family, brought Breakfast in for the families on Christmas Morning.  How wonderful it was to have “real” food, and not hospital food on that day.

This weekend I volunteered at an event, Cure Me I’m Irish.   It was a fundraiser to raise money for neuroblastoma research.  I was able to tell my story to a few people, and again, they were “amazed” by me.  But, I feel that it is important to give back, and to help in whatever way I can to make sure that some day, no families have to face what we are now facing.   One thing they are working on funding right now, is a drug called DFMO that is helping kids with relapsed neuroblastoma (for which this is NO cure)  http://www.beatnb.org/dfmo/

So, I guess if I can “inspire” people to do great things, that will be good.  If I can help even one family make it through the day, then I am happy.  But, please don’t ever thing you “couldn’t” do this.  Yes, you could.  Like us, you wouldn’t have a choice.  You would figure it out – you would do what you had to do.

Many people in my situation are told “It will get easier”.  Often, that advice is given from people that have never lost a CHILD.  Maybe that have experienced a loss, parent, grandparent, dog – but never a child.  It is a totally different story when it was a CHILD.   Within my support groups though, it is often said “It doesn’t get easier, it just gets DIFFERENT”.  Yes, some days are easier for us and we smile and laugh.  But, there is always a sadness under the smiles and laughter.  It is just different, and will always be that way.

 

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“I am sorry but…”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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