The New Year

I hope everyone's Christmas was wonderful. We were fortunate and went on a short but well needed vacation to Las Vegas. I think that was our first real family vacation. I was nice to have time with the kids away from life's responsibilities and total attention on them. Though that didn't make it easy at all times having to be mom. I learned that Angelina my 8 year old can get carried away when she is so amused by something that the world is lost and she is so intrigued by what she sees. Eight years I never knew that, does that make me a bad mother? I am happy that Dimitri my 13 year old still likes hanging out with us, but so involved with his image drives me nuts, but again he is 13 years old.
Vacation is good even though it was exhausting physically; mentally I got to forget about the doctors, blood transfusions, and all the rest. Am I a bad mother because I let my kids eat red meat? I wanted them to feel free for a brief moment in their lives as well. They still had to take medication, but I wanted them to enjoy the vacations freedom as well.
I have been so involved in everything for the kids and that is not a bad thing, but I have forgotten everything about myself that I carry a baggage of exhaustion, than happiness. I have to say the trip reminded me that there was a time I used to be a woman and not just a robot. I have been doing my best all week to dress up nice and wear make-up. I am not a jewelry person, but I will put on rings and bracelets to spunk up my look. Instead of buying everything my kids need with any extra money I have in my pocket I splurged and bought a work-out set. I promised myself that I will start taking care of myself I just keep watching the Amber I once knew fade away and I have to give my kids hope not depression. My point is it is ok to be a little selfish here and there. You can even ask for help (that coming from me is funny, I am so independent that it drives those around me crazy) a support group maybe to make a meal for your family on blood transfusion day, I always come back tired. Maybe when you are having a bad day dealing with everything maybe a friend can help clean your house while you take time away to cry it out; or a spouse willing to help you get some time out to take a yoga class. Whatever your thing is BREATH!

Here is to the New Year may your children be free of any complications and Healthy. May us parents find the strength to walk away to take care of ourselves and come back stronger. HAPPINESS, HAPPINESS, HAPPINESS!!!! All the love to you and your families!

Holiday stress

I am so sorry for my delays this past two weeks. Of course I thought taking a vacation instead of gifts this year would relieve the stress, but truth is other people's stress can still get to you.
Pressure has been put on from work not due to my personal but to the economy and that now has effected taking care of my kids treatments. It is so crazy trying to keep a normal life and maintain doctor appointments. Last night I was so stressed out from my review that I just broke down and cried when I realized I had to take my kids in for labs this morning. I had to be into work earlier than usual and luckily my kids were out of school and Cristian bumped his appointment to take the kids. Then to make me feel like the worst mom after Angelina called me and said that she cried because she needed me there and I wasn't there.
I promised her that I would be there the day of blood transfusion. This is so hard trying to stay normal and smile when all I want to do is cry and scream. I am one person trying so hard to do my best and now I am being told I am not doing my best.
After the kids went to labs I get the call from the nurse that one kid is ready to transfuse and the other can wait til next week. Here I already am missing work and to get the kids on two different days NO WAY! so had to compromise with Christmas on Sunday and every thing closed and bumped the transfusion two days in hopes to keep them together. Sorry if I don't make a whole lot of since. I think I am going to get through this week, go enjoy my children this Holiday weekend, and just be grateful they are getting the BT they need this week.
Sorry if my stress has gotten to you, or if you have the Holiday stresses. I truly wish every one a Happy Holiday season, and remember to enjoy your loved ones, and never take them for granted. It truly is NOT the gifts that make the day special, but IT IS the people you spend it with that make it special.

Family bond

Having a family bond is so important when dealing with a illness. I come from a Greek background and so in my younger years my family was tight, and I was fortunate that even my American family is close. Though I have lost that closeness because of my adventures in life. I thought also because I was the black sheep of my family that was not a piece of me.
 I am grateful I got to spend my kids younger years as a stay home mom, but bringing them back to the US from a small village in Greece scared the life out of me so I kept them close. When Dimitri was in 5th grade and life was getting troublesome in school, friends introduced a school for my kids that allow me to be in the classroom several hours of the week allowing me to know my child's world away from my adult life. Then not only am I grateful that my bosses allowed me to take that time away from work to provide a better education for my children. So I have been fortunate in many ways. To better the case even on bad days I have learned to reach their level of understanding and always be there for them. Yet I still didn't understand my family. My husband Cristian and I have also had our ups and downs. He came into my life with my baggage and him having his own. My children's father not taking his responsibilities, and having to deal with my emotions and my kids illness I would ask so many times "Why is he with me?".
We recently got to experience a 3rd party in our home for a couple of months, and watch the situation I finally came to realize how strong our bond truly is. I got to see the beautiful people my children are becoming and that they are honest, compassionate, considerate, loving, independent people. To see the love and trust they have for both Cristian and I, and how much my relationship with Cristian has grown. I am the luckiest person that life allowed me to create that bond and all my hard work didn't go to waste. I know that while my kids have to live with their trials with Thalassemia they can trust every step of the way that we will be there for them in how ever possible. That is so important to create that with your kids or family member dealing with an illness, love is so important. Also don't baby them and tell them they can't because..... As hard as it has been to teach them to become responsible, independent people because of course I just want to save them every time. One day we will perish and they need to know how to save them selves, but also having that confidence in them selves to live their lives to the fullest, it is one life let them make the best of it.

Vitamin D

So in my adventures in Thalassemia I have been so fortunate to meet people all over the world who either have or have a loved one that live with Thalassemia. With that I have learned and have taught so much. I truly believe that by communicating as a community we can learn so much. Many things I have learned from study, talking with others with blood disorders (Sickle cell treatment is similar), and experience.
Through my communications I was told today to keep my kids on vitamin D. Well, my doctor never mentioned about vitamin D and now I am curious so I got on line and here are some known facts:

Low vitamin D is linked to decreased cardiac function, muscle weakness, glucose insensitivity, and refractory congestive heart failure.
Increased iron in the heart becomes evident in children with thalassemia major around the age of 9 years. Two-thirds of adults with thalassemia have cardiac iron deposition. Iron cardiomyopathy is the leading cause of death in thalassemia. "Our study describes an association between low vitamin D, high cardiac iron, and increased ventricular dysfunction. We cannot prove [cause and effect], but vitamin D might be worsening the cardiac iron overload and the cardiac dysfunction through its modulation of calcium signaling in these patients."
"Vitamin D deficiency is extremely common in thalassemia, and since osteoporosis is ubiquitous in this disease, vitamin D screening and replacement are probably indicated regardless of the heart findings," Dr. Wood said.

WOW! I didn't know that, one thing for sure I am going to go get vitamin D for my kids tonight. I will notify my doctor I have done so and I will check for correct dosages. You have the right to choose things in regards to yours or your children's heath care and treatment; but always make sure they know of any changes in case of an emergency but also ALWAYS make sure dosages are correct even when it comes to a vitamin can be just as deadly if used incorrectly.

Reference:
http://www.thalassemiapatientsandfriends.com/index.php?action=printpage;topic=2909.0

Having a bad day

So this morning on my way to work the song "Wild Child" from Enya came on and I used to play that song during Christmas back in the day when I was with my kids father, when they were small. As much as I choose not to remember those days, I can't for the fact that was the precious years of their lives, but also the time before I knew of Thalassemia.
That particular year I was remembering was 2001 when my cousin had died 6 days before our birthday (We were born on the same day different year), I found out months before the kids dad was cheating on me, Angelina wasn't born yet, but what I remember most is that in my head Dimitri didn't have any thing but the world in his hands. There was no doctors, tests, blood transfusions, chelation, he was your average kid. Remembering that mental and emotional freedom, until every thing blew out the next year.
Then as the time comes again to plan for blood transfusion next week and reality kicks in once again. I just want to tell the world off and hide in a corner and cry until I can't cry any more. No.... I still have to go to work, pick up the kids, cook dinner, run my errands, live life and act normal. I know the kids know when I am having a bad day, but I still have to reassure them everything will be ok. I may need to go out to the car a bit and cry it out, but once I walk back in I have to have a smile on my face. I F*&#ing hate this, but all day I am going to have to remind my self "I can do this", "I can do this", "I can do this"....

A simple choice

Here is a great video to share http://www.youtube.com/watch?v=82313FtBDNc&feature=related

State Disability

So today is a celebration for our family, after months of waiting the kids just got accepted on state disability. To my understanding but I will learn more tomorrow that I have to have an insurance and they help with the remaining (not 100% sure). The nice thing about this program is that it is evaluated on a yearly base, so I am not obligated to keep them from a normal life such as working, driving, etc... I may loose the benefits as they move into adulthood, but to have the chance to catch up for now. For the first time I can BREATHE!!!!!! Still have a long haul to catch up, but I can now see the end of the financial tunnel. WHEeeewww.........

Very important note: I never have nor will use the word "Disability" in front of my kids, so even if you have to get help in the same way, remember that is to help financially and they cover for those who receive a continuing treatment. Unfortunately they use the word disability, I never want to disable my children mentally because of a word, so be careful of your language. Funny how something so simple really can ruin a person's life.

What does it cost to treat Thalassemia?

Well, that can vary from what country you live in, whether you have insurance, and what coverage you have. Normally here in the US a capitalist country where you pay to have insurance called a premium some employers provide that payment as a perk of the job and other deduct it from your paycheck. In the US you also have to consider that in some states they are private insurances and in others may also have the option of state insurance in which case is cheaper than private, but may not have as much coverage as private. So, depending where you are and what you have are to be considered if ever faced in a situation as this.

Next depends on your weight and height, so the older you get and the heavier you become and taller is the more expensive it will be.

So I am going to use Angelina as an example she is maybe 40 -50 lbs. and about 4ft. They premedicated her because she is capable of allergic reactions during the process. One dose of each benadryl and Tylenol cost $9.16 which I could buy the whole bottle that lasts a week and still have cash for that amount. Then the supplies such needles, tape, hot packs, hook-ups go for $269.49. The day before blood transfusion we go in and do laboratory work, checking for their Hemoglobin and hemocrat, bilirubin, ferritin which is all important stuff that can run about $637.62. Then they have to order the blood, wash it and test it to make sure it doesn't react so her body doesn't reject it. Depending how much each donor donated will determine if she will need 2 or 3 units each unit runs $474.75 in this case she used 3 units. then the charge for the room, nurse and food ran $410.53. A hospital total of $2,751.05. Now we also need chelation which is the medication used to remove too much iron deposits in the body that has accumulated from the blood transfusions. Angelina again due to her height and weight will determine her dose. Right now she will be beginning at 4 125mg pills a day, each pill costs an average of $12.79 each so she will cost $51.16 A DAY. An average of 30 days a month $1,534.80 plus the $2,751.05 equals $4,285.85 A MONTH to keep one child alive, and then to consider Dimitri is older, taller, and heavier and runs around $6,000 a month.

In my situation I am fortunate my company pays the premium, but my deductible and total out of pocket is $10,000 a year. I consider my self a lower middle-class and the sole provider in the house hold and it is not worth the negative energy to go after their biological father for child support or help who lives in another country, if I get some thing every blue moon that doesn't cover 1/16 of one child, I guess... yeah? This is a bad economy right now and every one is struggling to stay a float. There are days I feel like I am not going to have food to feed my family, or be able to keep my kids on treatment because who can pay that, right? You have to find ways; have people donate their junk and hold a yard sale. It is hard work to have a successful yard sale, but if you really work it, that could be 2 monthly payments on top of what you already were planning on paying. If you have a talent use that talent and sale, sale, sale put all funds towards the bills. I like to paint so all profits made will go towards my medical, start a weekend job like mowing lawns, shoveling snow, cleaning houses again towards medical. What ever it takes to get your self even if baby steps forward more than you just going to work. The feeling of knowing you just paid more than you had helps calm those stresses.

You are probably thinking when is there the time? True, it is hard working 40 hours a week, go home be with your family, feed them, take them places. You don't have to do something every day or you will be worthless to your kids in the end anyway. Plan a couple of hours on your days off, maybe an hour every other day, if you are doing a yard sale maybe you can ask friends to volunteer and take shifts. The great thing about Thal kids there are not disabled physically and I have found even my kids enjoy at times when I involve them in helping eliminating some of the bills. They are aware that a lot of the times we can not do things because financially we are tight, so helping lowering the bills makes them feel productive.

I know the stress alone watching your child go through this is enough, then you have to deal with the outrageous financing, and trying to figure it all out, and try to keep a normal life. As impossible as that is, make sure you always have your emotional support, friends & family, learning to eliminate the unnecessary; that has helped me a lot, knowing no body is perfect and no situation is perfect so if you screw up IT IS OK! You are not super-mom/dad you are HUMAN, with a lot on your plate and you are doing the best you can. I hope this helps.

Other amazing mothers

St. Stephen’s Hospital in Delphi, India

Banish is a boy who has been on regular blood transfusions and iron chelation throughout his life. His father expired recently and his mother is taking care of the child. He needs regular transfusions, which are unfortunately very expensive and adds to their financial burden.

Praneeta’s father has been missing since she was 7 years old, and hence her mother is the only bread-winner and care giver for the family now. The mother looks after Praneeta, with transfusions, filter and oral iron chelation medicine costs. Praneeta’s mother has experienced difficult financial burdens and hence needs desperate assistance.

Ranbir’s medical expenses have been only managed by his mother after the death of his father. His mother is extremely poor and is under mental trauma since she had to stop his studies due to lack of funds for his treatment as well for his studies.

Personal Note: This is a very expensive disease and a life time commitment. These mothers struggle to keep their children healthy and alive and it is an International struggle that is why I personally believe that awareness is the best cure not only from prevention, but understanding the severity in health and financial that one person, research group, or doctor will come about with a cure worth a million unspoken words of joy and hope.

How do you watch your child go through this?

One mom responded to me "How do we do it????". The truth is in my experience is I DON'T KNOW! This wasn't what I signed up for. I remember when I was pregnant with Dimitri I wore my belly PROUD and people would look at me funny. I dreamt of my child's future and how he would be the healthiest ever and I would watch him grow into all his dreams.
I was so confused when I first heard about Thalassemia and how it was treated in our case in that time Dimitri was Intermedia not in need of transfusions. So I continued my denial of my kid ever needing treatment. The day the doctor called me and said I need to schedule him for a blood transfusion  my world was crushed. Here I was this out going person who even in hard times always looking at the positive way of things, and now I was spiraling into this black hole. Nothing was satisfying, I divorced the man I love and drifted away from my friends, stopped doing the events I used to and crawled into my own living Hell.
I was fortunate the my company paid for me to go to a self empowerment class that changed my world. I am not the same person I was before but I realized there is no, how do I do it, BUT just do it. Then when I found peace again with my husband and things were looking up my daughter had to start blood transfusions, here we went again spiraling down now I felt like I have lost everything. I was able to pull my self out this time and I am not saying I am OK with this because I am not. It has been a roller coaster ride I have my good days and my bad days and I deal with them as they come.
I have to remind my self again and again that I understand there is a different way of life, but they don't. This is their way of life, what they eat, taking medication, going in for many check ups, and monthly blood transfusions, actually knowing all the nurses in clinic, and to be able to talk to the receptionist like she is your best friend. Where "Normal" people don't even remember their doctors name. This is THEIR life.
We as parents need to support them in the journey they were given and allow that to be their "normal" we are lucky that for most 29 days of the month they can for the most part live a normal life, and even if that life ends short they had a quality life. So much easier said than done, but that is why even on a bad day tell them how much you love them and hug and kiss them and I don't care how old they become because we know every day is a gift. They don't always need to know how you feel in regards to knowing the difference, let them live their fullest without that stress of thinking they can't. Yes we carry the burden and again I didn't sign up for this, but they are my life, my existence and you do what you have to do; there is no thinking about it. If anything when I do think it, it is worse, take that negative energy and put it into your love for them. WE ARE LUCKY TO KNOW THESE WONDERFUL INDIVIDUALS! Not just my children but I also have met people around the world who live with Thal and are inspiring I would have never met them if I wasn't where I am in my life today, and believe it or not they give me hope and I hope to get permission to write about some of those individuals later on.

Ferripox New Drug in the US

I am excited to share that Ferripox is out on the market TODAY! This is a chelation drug that has been out in China for years and the cost from what I hear is less than half of Exjade. Granted is a different drug and may have different reactions to each individual, so make sure when speaking with your doctor that it is the best fit for you. Angelina is actually in the process of starting chelation and I called and requested if we can start her on Ferripox instead of continuing the plan of her taking Exjade. If indeed the price is true and the job is the same, I MIGHT still be under hard financing but be able to some what stay caught up some day! YEAH!!!

http://www.cooleysanemia.org/index.php?option=com_content&view=article&id=526%3Aoral-chelator-ferriprox-available-in-us-as-of-december-5&catid=1%3Alatest-news&Itemid=1

Dimitri's first blood Transfusion November 2010

Nurse broke his veins TWICE bad way to start a process ever since we use the IV team

Here comes the blood

Starting to turn pink

My now pink boy matches his then purple hair

AIDS possibly a cure to Thalassemia?

http://articles.latimes.com/print/2010/sep/17/science/la-sci-thalassemia-cure-20100916

Learning to Trust

My son Dimitri is now 13 years old, and just like any other 13 year old he has his friends and wants to hang out, meet girls and go to parties. When living with Thalassemia you still have to deal with the NORMS of life which is hard without any other stresses. Dimitri is the school clown, always the one making all the jokes and the one who most likely will get in trouble from the teacher because he was distracting the class. As a parent I have tried everything to guide him to change some things, but some times in life you just have to let your kids experience natural consequence which kill me. This morning I was thinking because after school he is going over to a friends house for a birthday party and it is a sleep over. So this morning I had to make sure he packed his blending cup for his medication, make sure he packed his Exjade (his medication), worry about if he will be careful of all the foods he shouldn't be eating and if he will be up all night and not wake up in the morning to take his medication.
THEN just to make my worries worse while I was at his school co-oping I past by the office and there he was in the office again. We just went through this last week. He got in trouble for disrupting others kids learning and being disrespectful to his class mates. I try to not pamper him or shelter him because of his disease even though it comes naturally to want to. I had the vice-principal come tell me what happened and I was up set and willing to discipline him by not allowing him to go to the sleep over. Then he went into tears about how the other kids said he did more than what truly happened. My heart began to break because I feel I have raised my kids to be honest with me and we have such a open relationship. That I didn't say anything and allowed him to continue his schedule. I have to learn to trust them that they will make the right decisions when it comes to their health and life. I want to protect them from every aspect but I have to let them learn and grow.

These are from September 16, 2010 when Dimitri just returned from a visit to Greece and right before his return he was in the hospital again for gall stones very common in people receiving blood on a regular base. Here he was submitted in for a kidney infection for un-known reasons and un-common for his age. The swelling is from a bad reaction to an antibiotic. During his stay he recieved a blood transfusion and after 3 days he was well enough to go home.

New bone marrow transplant method eases risk

http://www.msnbc.msn.com/id/37068859/ns/health-health_care/

Hospital payments

So the other day I was going over my explaination of benefits from my insurance to point out tho the kids father that a payment of $150 doesn't cover any thing really. I noticed that I was being charged $2060 for a unit of blood in which I had never seen over $700. Naturally me being hot tempered I would want to yell at those I know how to contact, but I kept my cool, because in reality those are the people taking care of my children not creating the bills. They kindly directed me to the correct people over at the blood bank; whom charge on their own and separate from the hospital.
As I explained to the lady what was going on she was in return explaining that they miss charged in the past and are making up for those uncharges. When I asked to to show me where those mistakes were made, to show me on the months they are making up for she changed her story to no those are our new charges. The lies now blew off my calm but I still keep my Greek temper under cool. I started to laugh and flat out said "WOW you are guys are really ripping me off! If you are charging over $2,000 for a unit of blood and my kids need mulitple ever month I will not be able to support any one to eat just to keep them alive" I demanded that I sit face to face with their department and go over every little detail of their charges and I requested the manager since I could hear her tone nervious.
The manager got on the phone I explained that there is no way a unit of blood costs over $2,000 and that I want to come in and go over all of the charges and that it is impossible in order to keep my children alive to be charged that much. He kept insisting that I do not go in and he will look at my account. He later called me and said that they found a error for the amount of $1,200 and they will correct it. In that time I was waiting for his call I went through the bills and noticed that wasn't the first time they made an "ERROR" and I mentioned that to him. He said he would do a history check on our account. I still plan on going to his office on our next visit to the hospital and my word of advice for those dealing with the hospital on a regular basis always go over your bills. Get familiar with the average charges don't be afraid to ask. It is so easy to over look things that are common in our lives, don't ever get comfortable with hospital bills.

Greatful

Today on my way to work I was thinking how greatful I am to have my family and the people I do in my life. Dispite all the obsticles, life has really given me the opportunity to grow into a healthy person. It shocks me to hear how other see me as a hard-working, giving person with talent. My point of view is that there is no other way just do what I have to and make it beautiful.

Well, for my begining blog I first want to say thank you to everyone who has been there for my family whether that was a smile, a sence of understanding, and even the greater things that other have done to help us.

As I start on this new journey of blogging others will be be able to follow the daily life of living with children that have Thalassemia and how financial and emotional  it can be straining, as you still have to wake up every day go to work, school and deal with the NORMS of a child growing up with all the other STUFF! Thanks for following us and I hope other families will find this in-sightful and helpful with their kids or even just the education of what Thalassemia is.