A quick update

Christian is doing beautifully with his treatment and we have an End Of Treatment Date of May 2016. These 3 years have gone by both excruciatingly slow and fast at the same time.

I feel like Ive been on autopilot just doing what needs to be done. It's big brothers 8th birthday and I am so grateful and proud of this wonderful big boy. He ha sbeen a great brother through all this and has endured many things and torment that a sibling ordinarily would not and should not have to face. The roid rages , the chemo brain , the mood swings.. big brother has been through it side by side with his brother. I pray that this life experience only makes him stronger, more optimistic and kinder in his adult years.

Christian continues to receive daily Chemotherapy, Monthly access to his port in his chest and also spinal taps every 3 months now instead of every month.

So today is the day. The cancer community calls this day D-Day . The Day of diagnosis. The day my whole world turned upside down and inside out. . On one hand, I can't believe it's been a year that I walked into my pediatricians office with an irritable crying 3 yr old pale as a ghost, nose bleeding and red dots all over his face. On the other hand , this has been the longest most trying and heart wrenching year of my life. Of our lives. It has made me love more, hate more , strive more, cry more , get weak at the knees more and just plain old scream for mercy more . Just when you think you can't go one more day .. You do. Because you have to.

I find it very difficult to express myself today with constant flashbacks of last year. At this point , I really feel like I have PTSD . With all that we have been through and still will be going through treatment for the next 2 years and 8 months, it would not be far fetched if I did.

After being told from the pediatrician to rush him to Westchester Hospital , I got on the phone and called my husband. A man that had bladder cancer at the age of 19 , all of a sudden feels the heart wrenching pain of his own baby with a diagnosis of cancer. Before he left work all of his head co workers got on their knees and prayed in a circle with him. Grown men on their knees, crying ,raising their hearts and prayers to the Lord. I wasn’t there but the thought of it still raises the hair on my arms. I thank all that have and still continue to pray for our baby boy.

I remember being so very scared and having to force myself to keep it together. Listening to the doctors and not understanding a word they were saying but repeating them for clarity. Leukemia? I had no clue what it was. I kept saying to my parents - the doctor told me it’s cancer , I don’t know what kind of cancer it is! I was so frustrated and felt lost that I was being told something that I didn’t research and I couldn’t fix.

Today, I can tell you all there is to know about Leukemia. Really I’m a walking dictionary. Weeks and weeks in the hospital with my baby boy hooked up to a pole, daily visits to numerous clinics, home health nurses for certain chemos , spinal taps, “push” chemos, and daily oral chemo .. My boy is amazing! BOTH my boys are amazing. Michael has been such a great brother and so very strong in all of this.

We all deal with crisis differently. Some want to check out and believe it will all go away when they open their eyes, Some retreat and push everyone away from them, some do everything they can to know about the disease and read every google article and statistical analysis, some go in denial and some get angry. My husband and I have been through it all and with the grace of God, we have not choked each other yet.

 It’s hard. There I said it . It’s Hard! No one likes to tell you that marriages are effected by children being sick. Everyone I speak to likes to sugar coat it and show me all the rainbows and butterflies coming out of their butts. I would love to be a fly on the wall of couples with a child with a disease and see how they really feel. No facades here ;)

I am so grateful for having my family and for having my baby boy here with us to share our lives together.

I pray that this year is quiet, calm, therapeutic and soothing for us all.

I'm staring at my kids more. Really staring at every smile, every curve as they smirk, every different kind of expression - I see them all now. I dont know why I never saw them before. I can't say its because I never paid much attention,I did. Im that mom that can be blindfolded and pick my child out a mile away. I'm that mom that knows which child just passed me with my back turned. From the moment they where born, I listened to every different cry, soothed every different worry and entertained every different mood they could possibility be in... But it's still different now. Different because the phrase "live like its your last day " rings so brilliantly true to me , so close to home that I hear my heartbeat as I am typing. 
I saw a poem once on a city bus by Meg Atwood.

"I'd like to be the air that inhibits you,
for a moment only, 
I'd like to be that unnoticed 
and that necessary" 

this was back when i was 20 or so ... Back then it reminded me of my high school sweetheart and i wanted nothing more than to be that necessary. My best friend and I would always recite it as if we owned it... 
I will never forget how much of an impact this poem was for us. We read it in silence and remained silent the rest of the ride home. 

Sometimes moms are that unnoticed but man are we necessary. 

I used to want nothing more than to be by myself on Mother's Day. I wanted to stay in bed all day and get well needed sleep or go shopping by myself all day without looking at the clock. Grant it, I will do that - but not today ... Today I want to embrace the reason why there is 1 day out of 365 days put aside every year just for me. It's to remind me that my job is so very important. To remind me that every day should be appreciated just like this day. If at a time I don't feel appreciated which may be very soon, I need to look back at this day. 
You see, I don't mind being unnoticed what I want is to know that I am that important in the lives of people around me and in the lives of my children.

that simple moment of time where I need to take a breath and it isn't there- that moment is so necessary. I know now that I am that necessary.

Happy Mother's Day,
May you always feel necessary

Today marks 6 months since Christian was diagnosed.  So as I sit in this oh so familiar and uncomfortable pull out couch , I remember 2 doors down where Christian was  diagnosed and my world came to a stand still. 

Louise 

I know I haven’t written in a while and I think it mainly has to do with me trying to actually live in the moment - no I’m lying - I haven’t been able to sit for a minute because my house is a mess, my laundry doesn’t have a bottom to it and my spare time is making sure I bathe my boys! Life is good all in all and seems like a ‘new normal’ . That’s what ‘they’ say - NEW NORMAL . Is that like a trendy phrase to make us feel like everything is back to ‘a normal’ … whatever it is , it’s been working and I’ve been using the phrase like it’s going out of style!! 
Christian’s chemo has been practically every day at the infusion center plus he takes oral chemo at home. If his number are up , he will be starting a new chemo come April 8th. I belong to a closed group of mothers of cancer children and I have been corresponding with a few of them. One mommy is in the hospital with her son doing the High Dosage of Methotrexate (another chemo Christian does in his spine and will be doing in the hospital IV next stage) . Well, it terrifies me to learn that her son threw up (which is normal with chemo) but the throw up got on mommies hands and practically burnt her hands! They were so itchy and unbearable. There has got to be a better way to kill cancer. This chemo burns the inside of his body.   This High dosage is only given to high risk patients and Christian is in that category. 

Food & Such:
My children eat healthy ! For people that know that I feed my one child chicken nuggets at times for dinner(but all white meat) this may be of a surprise to you .  Both of my children have NEVER eaten hot dogs just incase you saw the latest ridiculous post on face book that says eating hotdogs gives children a really high risk of getting Leukemia - if you believe that I have a bridge to sell you !  I am not a Momcologist YET but I am getting there and hearing stuff like this makes me so annoyed. 
Christian is a poster boy of health - he eats fruit and yogurt for breakfast , avocado salad for for lunch  topped with strawberries & grapes  & for dinner he may have cottage cheese with pretzels and what ever else I may have on my plate that is healthy. He eats all good food, he always has  . We  always try to buy organic but when it’s not organic , it is still healthy (except for the nuggets but for God sakes 4 nuggets on a plate will not give you cancer - I repeat 4 nuggets on a plate will not give you cancer!!  .  Fresh Fruits, Fresh Vegetables, Whole wheat , whole grain -  I DO NOT have any junk food in my house - mainly because I would eat it all lol! On occasion mommy makes speghetti and sauce but they are few and far between - I still have pastas that are probably expired in my cupboard.   My older son is a very picky eater but he rotates with the ’regular’ foods he eats. Mainly - organic cereal, grilled cheese sandwiches , cottage cheese and pretzels, organic fiber bars , apples, bananas , all white meat chicken nuggets (oh no!) , broccoli,  over cooked carrots and um I think that’s it! Oh and A LOT of organic Milk! Both my boys love milk.   If you know me , you know that I want to control everything and save the world  and things that go into my children’s mouth is no different ;) 

So yes you are what you eat BUT not in this case I guess right?

Our power went our last night. Usually, I would act like it was a catastrophic event but last night I took a different approach which showed me a lot about myself. I’ll explain…

The lights went out and I heard Michael Jr freaking out that the world was ending because he couldn’t see and he panicked. I consoled him while Christian was already flinging a flash light around like a strobe light.

After Mommy and daddy collected flameless candles and lanterns, the boys realized that it could be fun.  Daddy made a fire and the light from the fireplace made it look like the Christmas tree was lit up.. Yes, time has stood still in this house and we still have our Christmas tree up and I have no intentions on taking it down any time soon. Judge me lol. It reminds me of life without cancer and I don’t want to let that go just yet.

The power was only out for maybe 30 minutes but in that time we took a lot of preparation for the whole night and the boys were getting along which is usually unheard of! The power turned on and daddy and I ran in every room and shut all the lights off  EXCEPT I put the Christmas tree lights on.

What I learned about myself: When I paid too much attention to what should happen , I forgot to enjoy the moments that came that weren’t quite expected but can still be enjoyed. I know that I will probably have to be reminded in the future.  Reading my ’moments’ every now and again will help me to remember how important it is to truly just BE. Be in the moment. No need to get annoyed that the power went out.   I totally danced in the dark!

It was a very long day but he had no adverse reactions to the chemos and THAT is a good day! Tomorrow is Spinal Tap Chemo at 6:30 am so his port is still accessed so no need to have a pin down match again tomorrow to access him. Its weird bringing him home with a needle in his chest but it sure beats going through access tomorrow again.

Fundraisers .... I am getting anxious about whose leading, whose helping, whose volunteering etc. ...I promised myself that I would not worry myself over anything but Christian and my family and I have found myself dwelling over things that should not be so. I have to just pray that God will provide and allow others to help if they choose to.  I trust that God will provide. I trust that Christian is in good hands. And I trust that my friends and family are just that - friends and family. A beautiful extension of my life that could not be replaced. My friends and family have been so devotedly  loving, so generously giving and so compassionately considerate.

Very wordy but I just couldn't say one word to describe it :)
Thank you all for being you....

Home ... again . All is good in the Couey home praise God. We are all feeling well and masks are off so I hope to God that terrible stomach virus and anything else that tries to come to our door step stays away!!

Blood work came back today and gave us the green light to move forward with  Christians Chemotherapy next Tuesday. He is a week behind because of his sickness and I was very nervous that we would have to stall another week. Hope he stays ‘healthy’ to start.

This is called the consolidation stage where he receives Chemo Tues, Wed, Thur, and Friday 2 weeks in a row and then 14 days home (14 days on, then 14 days off , then 14 days on again. He gets a spinal chemo every Wednesday for a few months.  The chemo pill look massive and are very intimidating. I’m figuring I could get a pill crusher and maybe some slushy syrup and put in in some oral syringes. I had a dream about it so I’ll try it lol! Yes, some mothers dream of beaches and sunshine , I dream of how I’m going to get drugs down my child’s throat.   More to come…

I know that I haven't really reached out to anyone and I know there are many of you that do not know what to say to me. All I can say is please don't go anywhere. Stay on the sidelines and let me know you're there for me and my family. I know when a crisis happens us humans tend to get shell shocked and don't know what to say or what to do. It's ok. Just please don't go anywhere.

If you know me , you know that I talk talk talk ( yes and talk). If I haven't called you - call me . I don't care that I haven't spoken to you in 10 years - email me and ask me for my number. Yes I may not pick up at that moment but when I am ready to talk , I will know that you are there to talk to. I'm a Gemini - that's how I roll ;)

I have so many people to thank for cards and generous donations to Christian - when we get up from under all this chaos and things slow down I will send you thank you cards. I am so blessed to have so many people that love and support us! Thank you !

From day one Christian screamed & kicked (to put it lightly!) when he was getting accessed (through his port ie: magic button).  Its traumatizing to have a needle in your chest and see blood coming out that we call cherry juice especially for a 3 year old that doesn't understand.   Today Christian went into the doctors office in the transfusion center which we have never been to. The nurse was familiar to him from the hospital. He got called in, turned around to look at me, put his hand out and said "no mommy you stay dare- Don't move until I come back."
My mouth dropped because this was not my boy just last week!!! I can not begin to tell you how my heart gleamed that he is such a strong strong boy. I'm amazed at his courage.
Amazed at how he has evolved into his own in the past couple of weeks.
 
He takes his medicine better than a grown up! He ASKS for it  and takes his syringes of meds all by himself. They taste worse than dirt really! Mommy has tasted all of them . So when he takes them, we make gross faces and say how disgusting they are lol!
The magic cupboard is AWESOME and I must pat pat pat myself on the back for that one!! Lol
When he takes ALL his medicine we go to ’the magic cupboard’ and say “MAGIC MAGIC 123 MAGIC MAGIC WHAT CAN IT BE?”
He opens the door and miraculously a toy appears!!!
Christian always says “thank you Magic!”
Ok he’s my son and I am biased , but he is so cute!!!

The Magic is running out of magic ~ pssst : he likes matchbox cars if anyone would like to send them for his magic (or anything else!) !!! I am trying to incorporate my 5 yr old son Michael in using the Magic cupboard and reward him for good behavior also if anyone would like to help with  his magic toys as well. He is feeling left out a lot and is acting out lately . I know that this is a lot to understand for a 5 yr old and I am trying to find a way to not have him feel excluded or different in any way. It is so hard!  He has already been taken out of  Kindergarten and its like the rug has been pulled out from under him. I am trying to make our days as structured as possible because structure is what my babies need. 

Ok momma needs sleep
Hug your loves

Bone marrow results came back clear ! Meaning that we can go to the next phase of chemo and the first induction phase worked!! Next phase is very strenuous and will be driving down to westchester 4 days a week for chemo and spinal tap every Wednesday. Praise God and everyone's prayers my boys alive!

We. Are. Home. With home comes the inevitable sicknesses and before we left the hospital I get a call from my mother in law that little Michael has thrown up 6 times... Uh

So we came home , masks of course and isolated my Michael into his room. My hands are so raw from clorox wipes. This is so confusing for a 3 and 5 yr old. I pray God gives them the ability to understand why they can't play with their best friend and continues to give daddy and I the strength He has given us. I must say, daddy and I are a great team!!

Thought we were going home yet again today but we'll be staying until at least Friday :(.

Christian's labs tomorrow will determine if we can go home or not on Monday. His ANC (immune system) is still 0, but since he does not have a fever and he is on his meds, going home would be the best choice.

Christian has his spinal tap, chemo, and bone marrow aspiration on Friday, going home between now and then would be beneficial to his spirits. ♥

Christian is still in the hospital and will be here until at least Friday. He has a bacteria infection that most likely started in his mouth. He has thrush and now that I know this I ask Why they didn't look in his mouth as soon as we came back into the hospital considering it is very common due to no immunity after chemo, steroids and all the other meds. but i am quickly learning that i have to be on top of everything.

There are some nurses that are fantastic and their are some that should get a desk job not talking to people. There are also too many hands in the pot so making sure he is getting the correct medicines is something apparently the mommy has to do. And when the doctor doesn't order a platelet transfusion but he gets another one is a big concern and forces mommy to tell them to get their heads out of their..books. I'm quickly learning that its true when I used to hear 'you're your sons advocate ' I used to roll my eyes because I thought they were just reciting a phrase they heard others say. It's true - I am my sons advocate.

As a mommy , the worst feeling is to not be able to ease your babies pain. I remember like it was yesterday when my newborn Christian came home from the hospital with 4 broke ribs because he got stuck in the birth canal and all I kept saying was how much I wish I could take the pain away. How much I wished it was me. Christian is a fighter - he was born a fighter!

He gives me this stare of understanding - something that he has not done to anyone else. It's almost a stare of defeat but with a twist of " I'm pissed off at this situation mommy". He's done it a few times and my response is always the same ( big smile on my face ) " your going to be ok my love, you're going to get better , mommy is so proud of you- no worries" and he just softly nods his head.

I have no choice but to come to terms with my baby having cancer. Cancer , cancer,cancer. I have to keep saying 'cancer ' out loud as freely as I would say the word pizza. I need it to be a household word so my children don't fear it.

Boy is this hard to do...

I must say, I am so proud of my family. So proud of my husband for being my rock when I fall and I'm proud that he allows me to be his rock when he falls. My husband is an angel on earth, a remarkable daddy to his boys. He is a true miracle and a beautiful example of how someone can beat cancer and be healthy and in remission for 20 years!

I am proud of my little boy Michael that understands mommy can't be there every night to tuck him in and snuggle because she is taking care of Christians booboo. It breaks my heart that this experience will inevitably force him to grow up so much faster than he should. I believe in my boys, just as much as I believe that the sun will rise tomorrow.

...I am proud of myself for keeping it together and also allowing myself to fall apart. As I sit here with tears streaming down my face - I know I am blessed to have my little boy .

I know that if I didn't use my motherly Instincts to bring him to the doctor when I did, Christian would not be here with us right now.

I am blessed.
Louise

Night 2 and Day 3 of being back in the hospital with Christian. He's had a low grade fever on and off and has had 2 platelet transfusions and chemo. Boy is he tired and the steroids and people waking him up to take vitals and give meds through the port is only making matters worse.

Quick update : at Westchester medical - admitted. Will be here until counts go up and fever stays away. Been having fever and being monitored. A fever for a chemo patient is an emergency as opposed to a 'normal' immune system where you would just treat. Thank you for your prayers ! Christian is a fighter!

101.3 being admitted. Got antibiotics through the port. We are in a room in the ER and I hear all the kids in hallway hacking and sneezing. They will do their best to get us into the oncology (clean) unit as soon as possible but until then, my mask stays ON!! They should have a better method for a leukemia patient that has 0 immunity than to have us dragged into the ER.

Will keep praying for little Christian ♥

Christian got a platelet transfusion before we left. Our Chemo is 1x a week and we also have to do blood work on another day each week.  Blood transfusions can be done at both appointments. About 2 hours before we go to the appointment I have to put a numbing cream on his port so they can access it without him feeling any pain. What an amazing technology this is and very sci-fi scary at the same time. My son has a port in his chest - it looks smaller than a quarter but larger than a nickel. His skin is over it so you cant really notice it unless you are looking for it. Its connected to a main large vein on his neck and then connected to his heart.

Christian just asked me why he has a 'button' on his chest. Please Lord give me the strength to get through those kind of questions in a simple peaceful way a 3 year old can understand. He stopped asking about it so hopefully I said something good. Watching your child go through so much confusion and pain is unbearable but I have been reciting a poem in my head that says something like "you never know how strong you are , until strong is the only choice you have". ... This statement can not be any more true.

Our friend Cara DeVito Christophides  has generously set up a Tupperware fundraiser for Christian.

Your purchase will make a difference. Please log on today. 20% will go directly to Louise for Christian's medical care costs. This ends February 13. Happy shopping ! Just make sure on the RIGHT side of the page you see "Cara's 30 Party".

http://order.tupperware.com/pls/htprod_www/home

Needing prayer - spinal tap tomorrow to give a new chemo. He has underwent 3 different kinds so far. Praying for no complications and an easy recovery.

I want to thank everyone so very much for all your love , support, prayers and donations. When I get a free minute I want to sit and really take in all of your loving thoughts. I haven't sat and read yet. I have been giving my updates to my cousin that made this website and she has been doing all the work.‏

Platelet transfusion tonight and everything went well. He's sleeping now. Had a doctor look at Christians walk today because its wobbly and it is as though he is trying to compensate for something . He's kind of walking with his belly? I can't describe it well but I do know that it's not my babies walk. Doc seems to think that it is from the chemo and will get better in time. Mommies gut can't seem to shake off that its something from the spinal tap . I'm probably worrying too much but worrying has been my 'normal' lately.

Steroids = awful! Complete Jekyll and Hyde and you don't know who will be joining your conversation. He feels so stuck within himself. One minute he's smiling and the next he's kicking and launching his toys. Breathing in 4 and out 8 seems to help me but it can also make you feel like your going to pass out if you do it too much...( so there was a bit of my humor coming out) I have been trying to laugh today . Like laughing at jokes that's aren't remotely funny but I just want to feel better than I have been. We have to. We just can't sit here and allow the heartache , pain , anger , helplessness to take over . It will make us sick and we need to be strong for our 2 babies. At least this is how I feel today.

If anyone plans on sending anything to the hospital , doctor just came in and said we will be going home on this Saturday to start out-patient chemo and cocktail if meds.
Anything that is going to be delivered by Thursday is fine.
Any other time , please send them to my home and inbox me for my home address please.

Please also check out the new menu item under donate for a list of items we are in need of. Thank you again!

Let this long journey begin!!!
♥

Christian had a third round of chemo today. He's sleeping now with Benadryl but nurse says that his vitals are good. Thank God! He will be getting a platelet transfusion again. Going to speak to the Oncology nurse tomorrow to find out Christians blood bank number for everyone that wanted to donate. He is an O+

Last night we had a scare . Christians port needle got displaced and fluid started filling up around the port and on the side of his neck. I'm told that to out the needle in the port, there is a numbing agent used so not to be in pain - well being that this was an emergency I had to pin his arms down and watch the needle get jabbed into his chest. Ironically he took it well probably because he is a little boy of steel! Bless his little heart. I am so proud of this little man.

Christian had another platelet transfusion today. He sneezed and had a bloody nose which indicated his counts were low. Nurse says its 'expected ' from leukemia patients when they are on chemo. Chemo kills the leukemia (bad cells) and also all the good. Waiting for the CBC to come back to see if he needs another red blood transfusion. If someone walks in this room without a mask again I think I'm going to tape one to their face!or shove it up ... Read the hospital door sign! It's been up since chemo started. Geez

My email has been flooded with prayers for my little Christian. Everyone that has asked for where we are and where you can send care packages and special gifts for Christian.

Westchester Medical Center
100 Woods Rd.
Valhalla, NY 10595
Room 3218

Please make sure everything is well sanitized and unopened as much as possible.

I can't be more thankful for everyone's love and support. And yes sometimes it does take something like this for people to come together. We may not understand it but God puts us on a path for a reason. Today I am thankful God gave me 2 beautiful boys to give birth to and trusted me to take care.

Louise

There comes a time in someone's life that all of a sudden they find themselves having to give up all their control and give everything up to God. For me and my family, today Is the day. Christian has leukemia . Words can not describe the feelings an unfathomable word is giving us. It sounds like a curse word to me . I can't say it without whispering it. I thank you all that have been praying and your prayers have not been unheard . God is always in control even if , even for a split second, we feel like he has abandoned us. He has not . He will not . God is our savior and healer . This will be a long long journey for us BUT WE WILL BEAT THIS! and I am asking for prayers more than ever right now. Surgery for a spinal tap and iv portal will be determined tomorrow . Also trying to get a Ronald mcDonald suite so we have our the Couey brothers see each other all the time.

I took Christian to the pediatrician because he was pale as a ghost. Doc said that he was fine and it looked like he was getting over a virus. I left there shaking my wad because I knew there was something wrong. Between Thursday evening and Monday morning Christian had 4 bloody noses, little red pinhead blood like dots all over his body, little blood blisters on the inside of his mouth and still pale as a ghost. I called the doctor in between this time but they just told me to monitor him.

I rushed him back to pediatrician on Monday morning and told them to take a complete blood count because I thought it looked exactly like ITP - (google mommy!) Itp is a decrease in platelets and can come when you have recently undergone a virus . Christian had 2 viruses and pneumonia just last month so I was convinced that this is what It was. Complete blood count showed platelet count was 8 , white blood count was 54,000 and the red blood count was very low .

With the fear on Dr. Harowitz's  face, the first thing that came out of my mouth was "does my baby have cancer!" I couldn't even breath. I went into panic mode but still smiling at Christian with tears running down my face.

I can't believe I'm here. At this moment. I'm here. I was under the assumption that if the white blood cells are high it's because it's fighting an infection. An average person's white blood cells are 5,000 (I think) and a 54,000 white blood count is actually not really white blood cells. The leukemia cells have taken control of premature white blood cells and are running ramped.