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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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Beyond anything I could imagine…..

When I first heard the news that there was a shooting at a school, I quiet honestly didn’t listen to hard.  I was going about my day.  But, as the day went on and more information came out I did start to listen.  When I turned on the news, I could only watch for a few minutes because I was getting sick hearing that is was CHILDREN that had died.  Not that the adult lives taken were any less important or signficant – but as the parent as a child who has died I started to feel for the parents of those precious children.  When I was going out later that I night, I heard that they hadn’t even removed the children from the school yet, because they were waiting to identify their beautiful little lifeless bodies.

I thought about our last moments with Alexander.  As you know, it was very sudden and traumatic. However, unlike the parents of these children, we DID get to hold him – we got to say good bye to him. We got to pray with him as he took his last breaths.  These poor parents did not have that chance!!  They had to wait!  I can’t even imagine that!  It is hard enough to lose a child – but to not be with them as they lay dying is just so tragic.  My biggest fear for Alexander was that he was scared when he was dying.  I did come to peace, that he was already with God when they were working so hard to save his life.  However, these children – the fear they must have faced when that man came into their classroom, is beyond anything even want to think about!

As often happens in the wake of a tragedy like this – people voice a lot of opinions. As I head someone one say on the radio today, the internet has given people the “freedom” to speak more freely – often anonymously through comments  – but not always.  I have heard =about the need for “gun control” (the guns he used were bought and owned LEAGELLY – he used them ILLEGALLY!) – “That is why I home school my children” (okay – so then maybe you should lock them in your house all the time because shootings have also happend recently at the mall and the movies!) “it is because we took God out of the schools” (tell that to the parents of the Amish Children that were slain at their school – I am sure THEY had prayer in school!)  and yes, even someone compared this tragedy to the “tragedy” of all the abortions that happen every day, but never make it into the news. (Now, I am very pro-life – but now is neither the time or place for such a discussion – or even a time to make that remark!)

The one topic you DON”T hear about a lot right now is that of Mental Illness – the man that did this was clearly mentally ill – perhaps in the days/weeks ahead, more will come out about that – perhaps there were “signs” of his illness – perhaps not.  I don’t know – but we need to STOP making mental illness such a “secert” disease and talk more about it – not make it so shameful – because like other diseases, it IS a sickness!  I am no way going to excuse this man for what he did – but perhaps if had gotten HELP this horrible thing wouldn’t have happened!
But, now is really not the time for any of these topics.  Now is the time for supporting those families in need – for showing them love and compassion, while respeciting their PRIVACY!

You NEVER get over the loss of a child – and as I said earlier, to lose a child in such a horrific way, is just unimaginable.

These families will be forever changed – and people are going to SAY a lot of things to them.  I found this blog, that gives some good suggestions of what NOT to say and what TO say to people in a time of grief.

http://www.missfoundation.org/professionals/articles/effective

Of course the best thing you can really say – is just to say “I am Sorry” and then keep your mouth shut!
Praying for all those involved in this terrible terrible event.

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My Friend Rosanne

A week ago my friend Rosanne died from STUPID CANCER!  Actually, she was the one that got me to start saying that phrase in the first place.  She was diagnosed about 5 years ago with terminal cancer.  Yup 5 years ago!  She fought long and hard.  Her goal was “quality vs quantity” and she had a very good quality of life.  She attributed much of her quality to her faith, her positive attitude and her red lipstick.  She was an amazing woman. Despite her illness, she went to work almost every day when she wasn’t in treatment, and she even went to the gym whenever she could!!  She was the best looking “sick” person I ever knew! She was always well dressed with her heels and pearls and of course the red lipstick.

She and Alexander fought their cancer together.  I am sure that he greeted her with a big smile and hug when she arrived in Heaven.

It was hard to be at the funeral – not just because of my loss, but to watch her family too.  She was only 55.  She has a husband who now has to live without the love of his life.  She has two children in their early 20’s – just starting their adult lives, and now have to go own without their mom.  Her daughter won’t have her mom to help her pick out her wedding dress some day, and her son won’t have that special mother/son dance at his wedding.  She also has a younger son – just 13 years old.  Such a tough time in life without the added burden of losing you mom.  Then, I looked at her own mom and dad.  I feel for them, and the pain they are going through in having to bury their child.

cancer is such an evil disease -it steals lives – and effects the lives of those left behind in profound ways.

i hate cancer

 

 

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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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PTSD

In one of the bereavement groups I go to, a mom, who is coming up to the 1 year anniversary of her daughter’s death was saying, that she had been feeling really bad recently.  It was about a year ago that they found out they could not longer treat her daughter, and that she would die.  Some of the other moms said the same thing happens to them – even 11 years later.  I know that every year, around the anniversary of my dad’s death, I get very sad too – it has been 9 years since he has been gone.   Often, I am not even THINKING about it, I just get very sad.

I am sure that will happen for many years to come, if not forever with me.  This time a year ago, we were going through Alexander’s Bone Marrow Transplant.  While, he did very well, he did have some very rough days.  They give chemo to kill off EVERYTHING, and the kids can get very sick.  Alexander, who already had blood pressure problems from his tumor, had even MORE problems, that landed him in the ICU for a few days.

On Friday, January 20th, another young boy, Cole, lost his fight to neuroblastoma.  Although, I kind of like how his dad worded it – the cancer did not KILL him – he died to KILL the cancer!   The days around his death, waiting for the wake and funeral were hard for me.  I was of course very sad for them, but I was also remembering what we went through during those days.  I knew how hard it would be for them to have to make the decisions that no parent should ever have to make!  I did a lot of praying during those days – prayers for the family, for the strength they would need to make it through.

Growing up we didn’t have pets.  Well, I had fish, and my sister had a hamster for a little while, but that was it.  Before I got married, I got a cat.  I love my cat, and Alexander loved him too.  But, I had never really understood how people could be so attached to their pets, I mean, after all it is just an animal.  But, recently we had to take Max to the vet for a checkup.   He needs a tooth pulled, and they tried to pull it at the office.  He CRIED!  I almost started crying right then and there!  I think that it brought back too many memories of the painful things Alexander had to go through.   We had to take him for a Cardiac Echo – again, memories are flooding back into my mind!  In two weeks he needs to go under anesthesia, I am wondering how I will handle that, or if I will just have to send Richard off by himself!

I am by no means comparing what Alexander went through with that of a cat.  However, it is the feelings of helplessness that are coming back into play.   We went through a very traumatic year with Alexander, and just when I think I am doing “better” something like this comes up, and I realize I am still a MESS!    I know it hasn’t even been a year yet, but I can have such good days, and other days, well…..they just aren’t so good.  I know there is no time limit on healing – it is just I was going forward pretty well, and now I feel like I am 10 steps back.  Back on my sofa, not wanting to DO anything, eat anything, talk to anyone!  But, I also know that isn’t good.  I do take my days to myself, and I am kind to myself and do only what I can handle. But I also know that I may suffer from the PTSD for the rest of my life.  I mean, really, how DOES one get over the lose of a child???

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Prayer (again)

In the past, I had always been a big believer in the “Power of Prayer”.  One of the best examples I have of prayer working in my life, was back when I was living in Virginia. I was a full time volunteer with Habitat for Humanity.  I had a place to live for free, however it was about 30 minutes from work and 45 minutes from the church I was going to so I wanted to find some place closer.   One Sunday at Church, they were doing a baby dedication.  It was a non-denomination church, so they did not do baby baptisms.  The baby girl was 7 months old, and had 20 month old twin brothers.  Dad was going over seas for 6 months with the Navy leaving mom alone.  I decided to pray for that family, and asked God to send someone to help her.  A couple of weeks later, I had gone to a potential house for me to live in. However, she could not let me live there for free, and I could not afford the rent.  She said she would “pray for me” – I wasn’t holding up much hope.  However a few days later I got a phone call from a woman who had gotten my name from the woman I had visited.  She invited me to come to her house and see if it would work for us to live together.  Wouldn’t you know, it was the woman I had prayed for a couple weeks before in church!   God had sent ME to be the one to help her!  I lived with that family for about 9 months.  I got free rent in exchange for helping out with the children when I was not working.   The 20 month old twins started College this year, and the 7 month old girl is in high school with her eyes set on being a Veterinarian when she heads off to college.  Another baby came about a year after I left!

So, I have seen prayer work in wonderful ways.  But when Alexander got sick – things changed for me.   We had many people praying for him, praying that he would be cured.  But, those prayers were not answered.      I have heard it said that God answers all prayers, but sometimes the answer is “NO”.  I don’t know why our Alexander was not healed from his horrible illness, but others have been.   Cancer is a horrible disease – and some people respond to treatment and others do not.   But, I do NOT believe that God is up there going “yes, for this one, no for this one – well, maybe sort of for now, but I am going to send the cancer back in a few years”.

So – how do we pray for people in times of great illness? I have thought about those that need say a heart transplant.  Sure, you want to pray that a heart will be “found”, but the only way for a heart to be found is for someone ELSE to die!  How do you pray for that?   Not an easy prayer by any means.

Many people wondered how we “did it” – kept our energy and strength going while Alexander was so sick.  I like to think it was the people praying for us.  It was their prayers, for our day to day lives that kept us going.  Each day was such a challenge for us.  Even on the “good” days we were always waiting for the next thing to happen – wondering not IF but WHEN we would have to go back to the hospital again.

When I pray now for those that are still fighting the battle against STUPID CANCER – I pray for peace and strength.  Each day is a challenge – every choice is a challenge.  Do we consent to this test?  Do we ask for a second opinion? Is that opinion right? Do we have the surgery? Do we not have the surgery?  Do we turn off the machines and let them go?  None of the choices families with a sick loved one are easy – and no matter what the choice, you always wonder if you made the right choice or not.

So – go out PRAY – pray for those in need – pray for those that don’t have anyone to pray for them. Pray for PEACE and STRENGTH for all those that are fighting.

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Prayer

This past year we have had many people praying for us.  Praying for a HEALING of Alexander, praying that we would make it through each day.  Prayers for peace as we faced the lose of our beautiful little boy.

I have always believed in the power of prayer.  Studies have even been done, that have shown that prayer does work to help in the healing process.   But what happens when we don’t get the answers that WE want from our prayers?  After Alexander died, I did wonder for a bit “did I not pray enough? Did I ever actually ASK for him to be healed of his horrible disease?”.  But deep down I know, that God does answer all prayers, but that sometimes the answer is NO.  This is not something we like to hear – and it is very hard for us as humans to accept.

Why are some people healed from their cancer and others are not? Why do some kids fly through their treatments with only a few side effects, while others, like Alexander get the rarest of side effects?   There are no easy answers to these questions – I don’t know that we will ever have an answer other than everyone is just different, and everyone responds differently.

How then can we word our prayers? If we know someone that is waiting for a new heart, how can we pray that they will get one, when by that prayer being answered, another family has to face the death of their loved one? Are we then praying for someone to die?  Again – no easy answers.

When are prayers are not answered in our way what do we do then?  I am sure often then people are angry with God, and you know what? HE can take it!

Pray for those that are taking care of someone too are wonderful – for safe and gentle hands for the doctors and staff as they take care of those in need.

I think the best prayers we can offer up, are prayers for PEACE, for those that are going through difficult time.  Prayers that they will find the strength, the will just to make it through each day.

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