Spring Yard Sale
Once again, our incredible family is holding a huge yard sale fundraiser for Maya. If you are local, we’d love to see you there. If you’d like to donate anything to be sold, please let us know. 
Healing Maya Spring Yard Sale
Saturday, May 18th (rain date May 19th)
9am-4pm
320 Rose Street
Massapequa Park, NY 11762
Please feel free to share this info!
Maya in the News
In case you haven’t already seen it, click on the link below for the News 12 Long Island story on Maya.
We are so grateful to Shari Einhorn and News 12 for helping to share her story.
My Wish
As I closed my eyes, and prepared to blow out the candles on my birthday cake this evening, I made a wish.
I wished for a cure. I wished for a cure for all those battling cancer.
I wished that I had not had to attend the wake of an old friend who lost his battle with leukemia this week. I wished that I had not had to see the pain in the eyes of the people who loved him. I wished that there were some words I could have said to make things better. I wished that I had not felt so helpless there and that I was able to, somehow, take their pain away.
I wished that my daughter had never been diagnosed with cancer. I wished for a normal childhood for her. I wished that her days were filled with happiness and free from pain and fear. I wished that my family did not have to suffer. I wished for the fear I constantly feel, the fear I know I will continue to feel for the rest of her life, to completely disappear. I wished that I didn’t have to be so afraid all the time.
I wished that there would be no more suffering. That there would be no more fear. Not for any one. I wished for cancer to disappear.
Maya’s Health Insurance
Many have been asking about Maya’s health insurance situation. It is too complicated to explain in a Facebook status so I thought it might be best to do it here.
The whole situation is pretty disgusting and, as I sit here and attempt to explain it, I still cannot believe that this is happening to us.
First, in order to understand this, you should know that both of my children have health insurance through Child Health Plus. Any family qualifies for this program, regardless of income, if the parents are not offered a health insurance policy through their employer. Because my husband and I are both self employed, this is a good option for us. While we do pay a monthly premium for both childrens’ policies, the cost is much more reasonable than it would be if we were to purchase a private health insurance plan.
With Child Health Plus, you have the option of choosing one insurance company from a few different ones. We chose Empire Blue Cross/Blue Shield and have kept that plan for the last few years.
On March 20th, we received a letter in the mail from Empire, addressed to Maya’s parents. (In this letter by the way, there is no mention of my son. As of today, we have still received no information about his insurance situation.) The letter was dated March 15th and stated that, as of April 1st, Maya would no longer be covered by Empire. Instead, they were “transitioning” her to a new plan. Nowhere in this letter is there any reason or explanation given as to why she has been moved to a new company. On the back of the letter is a list of doctors and a home healthcare company that Maya will no longer be able to use as a result of the change. Included on this list are the names of 12 doctors, all the doctors who have treated her for cancer (or cancer related issues) since her diagnosis a year ago. The doctors on the list include multiple anesthesiologists, a pediatric cardiologist, and most importantly, Maya’s entire team of oncologists. These are the same doctors that have treated Maya over the course of the last year since her diagnosis. These are the doctors who have put her cancer into remission and that continue to work toward saving her life. These are the doctors, nurses, child life team, and social worker that we have come to respect and trust. These are the people we have developed relationships with. They are the people who have treated my daughter and have helped to minimize the trauma that she experiences as a result of cancer and cancer treatment.
Needless to say, I was pretty upset after reading this letter. I spent the next few days on the phone. Nonstop. Hour after hour. By my second day on the phone, I found out that, although it had not been made clear to us, we had the option of choosing a plan other than the one they were assigning us to. We did not have to let them automatically enroll us with this particular plan. In fact, we could choose from seven other plans. I got a list of the plans and began researching each one immediately. Finally, I found one that all of her doctors would accept. On March 22, I called the plan and requested an application. I quickly found out that the deadline to apply for coverage under that plan was on March 21st. I was told that we definitely would not get coverage through them by April but, if we applied right away, maybe by May. I begged and pleaded for help. I explained our situation over and over again to person after person. No one would help. Although we were only one day late, they absolutely would not make an exception.
So that is where we are now. As of today, Maya is no longer insured to see her doctors. I can only assume that she is currently covered by this new plan based on the letter we received. We still have received no information about the plan though (other than that Maya’s doctors are not in their provider network). We have no identification numbers and we have received no insurance cards.
Regardless of our insurance coverage, I will not make this harder on Maya by taking her somewhere else to start over. I will not allow her to experience the pain of starting all over in a new place with new people. I will not give in and take her to doctors that I am not comfortable with or that I do not feel are best suited to treat her. I will not compromise her physical or emotional health. It is wrong that anyone would ask me to.
For now, Maya will continue to see her current team of oncologists. I hope that by May 1st, we will be able to get Maya onto the new plan. I pray that the cost of her treatment over the next month is not astronomical. I am grateful that the social worker at our oncologist’s office is going to help us to find charities or other sources to help offset some of the costs of treatment. I just hope that the financial impact of this is not devastating to my family.
The worst part of this entire situation is that, if we had been given more time, this situation could have been completely prevented. It is my opinion though that this was intentional. I cannot see it any other way. The cost of Maya’s treatment is very high and it feels to me as if Maya is being forcibly pushed onto another plan in an attempt to cut costs. I have been told that the plan we are being switched to is new and not widely accepted. It also doesn’t pay out as much as some other insurance companies do.
Again, I am disgusted by this entire situation. It is difficult enough to deal with the pain and worry that comes with your child having a life threatening illness. Adding this worry on top of it is cruel, unnecessary, and unfair.
At this point, I am not sure where to turn for help. Unfortunately, none of the people I have spoken with regarding our problem have been able and/or willing to help. Many of you have suggested contacting the media to help us. I ask that if you know someone or have the ability to put this information into the right hands, you please do so. And please, share this. Share this blog and information with friends, family, and even strangers. Maybe, if we’re lucky, the right person will hear this and be able to help.
Finally, thank you all so much for listening. Thank you for caring. Thank you for the messages, the encouragement, and all of the suggestions.
The Beginning
I want this month to be over.
For the last few weeks I have been irritable, overly emotional, angry, and generally unhappy.
I hate the month of March. It was during this month just one year ago that everything changed.
She was diagnosed with cancer at the end of the month. But it was during the weeks before just a year ago that, without our knowledge or consent, cancer was beginning to flow through her blood. It was during these weeks that her little body, for reasons that we are not likely to ever understand, began uncontrollably producing cancerous cells. It was during this time that cancer began trying to kill her. It was during this time that cancer could have killed her. If she hadn’t been diagnosed, if she had not begun treatment so quickly, it would only have been a matter of weeks.
One year ago, on this day, we spent the morning at the circus. In the afternoon, we took Maya in for another blood test. I wasn’t expecting what we were about to hear. The results were not good. We did not know exactly what was wrong but they told us it was serious. They told us it could be life threatening. They told us to keep her in the house for the weekend, out of crowds, and away from people. This happened on a Friday. They scheduled further testing for Monday to determine exactly what she had.
I will never forget the sadness, the fear, the anger that I experienced that weekend as we waited for Monday’s tests.
I will never forget how I cried. I will never forget how I prayed to God that this was all a mistake.
St. Baldrick’s Day 3/9/2013
On Saturday, Maya was invited to be an honoree at a local St. Baldrick’s event. It was an incredible day and we feel so lucky to have been included. Maya was even invited back to be an honoree next year.
We are so grateful to those who organized and included Maya in this. We are also grateful to those who volunteered to have their heads shaved, and to everyone who attended and helped raise money for St. Baldrick’s.
I’ve shared some photos below.
Long Term Maintenance, Month 3
It’s almost a year now. We’re almost a whole year into this and I’m still just as angry as I was in the beginning. Maybe even more.
Maya’s neutrophil count dropped again. Since beginning maintenance, her blood counts seem to follow the same cycle each month. She gets her IV chemo and five days of steroids, her counts shoot way up. A few days off the steroids, they bottom out. We stop chemo and they head up again. We start chemo and they drop down. The same thing month after month. It’s a constant roller coaster.
At this point, the doctors feel that her dose of chemo is just too high. Her body can’t handle it all. For now, they stopped all of her chemo and we will check her counts again next week. If they’re high enough to begin again, they’ll adjust her dose and hope that this doesn’t continue to happen.
I can’t stop worrying that she’s going to get sick, really sick, while her counts are low. I can’t stop worrying that she’s going to be unable to fight a serious illness or infection. I’m afraid that she’ll experience something like she did in the summer. She was hospitalized and remained sick for weeks because of a common childhood virus. All she did was sleep. She was unable to even keep her eyes open for more than a few minutes at a time. There were days when I though she would not get better. There were days when I feared the worst. We can’t go back to that again. Not ever again.
Tonight I am feeling so angry that she has to experience this. She is constantly missing school, play dates, dance classes, and other activities. She doesn’t get to be a regular child. She is deprived of normalcy.
I just can’t get over this. I cannot accept it. This is so, incredibly unfair and she doesn’t deserve it.
I know that, for so many reasons, we are lucky. I know that things could be worse. I know that for many children (and their families) things are worse. Much, much worse.
I should be grateful, right?
I’m not. I hate to admit that but it’s the truth. I just want things to be normal for her. I really don’t think that’s a lot to ask. I want her to experience the same happiness and have the same opportunities as anyone else. My god , anyone deserves at least that much right?
The worst part of this is that there is no end in sight. Yes, treatment will end in two years. But this will not be over then. It will never really be over. We will never, ever be rid of cancer. It will always be looming. Lurking. Hiding. Waiting. There will always be the possibility that it will return again.
I don’t want this for her. I want to be able to fix it. I am so angry. No child deserves this. Not my child. Not any child. It is not fair.
Long Term Maintenance, Month 2
Just wanted to post a quick update.
Maya’s blood counts were low today. Her neutrophil count was only 320. This means that she is again at serious risk for infection. As a result, we’ll be keeping her out of school for a while and she won’t be starting the dance class she was supposed to start tomorrow. She will be stuck at home again. No going anywhere for a while and no visitors at home either.
Her red blood cell count and hematocrit were also low today. There is a possibility she will need a blood transfusion later this week. This explains the headaches and fatigue she’s had lately.
Until her counts begin to head back up again, all of her medication is on hold. No chemo at all.
And for me, the worry starts. I’m questioning everything we’ve done with her over the last few days. I’m thinking about all the places we’ve taken her and I’m wishing we had stayed home more. I’m wondering what illnesses she’s been exposed to. And I’m praying that she doesn’t develop any fevers and that she doesn’t get sick right now.
Hopefully things will turn around soon. I will keep you all informed. Thank you for all of the prayers.
Stand Up for Maya
Today is World Cancer Day. Last year at this time, I am ashamed to say that I was unaware this day even existed. Certainly, I was not aware of the importance this day holds for so many. And I never would have thought this would become an important day to my family.
If you read this blog regularly, you can probably tell by now that I have an agenda. Yes, my primary reason for writing this blog is because it is therapeutic for me. I hide nothing here. Writing is what makes it possible for me to get through all of this. I’d be lying if I said that is the only reason I do it though. Since Maya’s diagnosis, it has become so important to me for others to know her story. I want them to understand that her story is not unique. There are so many sick children out there. So many just like her. Through writing this blog, and by showing others my family’s reality, I want to raise awareness of childhood cancer. I want others to know that our children are sick, that many are dying, and that not enough is being done to stop this from happening. I want to play some part (even a very small part) in a major change.
If you would, please stand up for Maya today.
Share her story with someone. You can share this blog, or this photo from her Facebook page. If you prefer, you could also share the story of another fighter. Just look around a little. I promise, they will not be difficult to find. There are so many of them out there. Let people know how our children are suffering. Let them know that childhood cancer is not rare. Let them know that this could happen to any of our babies.
As always, I thank you for all the love and support you show my family. Thank you for sharing this journey with us.
