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Anger

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

 

I am angry that:

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

 

 

 

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

 

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

 

 

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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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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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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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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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