Getting Brave

20130815-191241.jpg

It is terrible to see your child in pain. Whether it be physical or emotional pain, it is torturous for a parent to witness. To me though, emotional pain can be so much worse. It is not temporary like physical pain. It can remain long after its cause has disappeared. Throughout treatment, this is something I have thought a lot about. This is something that has worried me almost as much as the cancer itself. I know that Maya will have physical scars from what she has endured. I can’t help that. There is nothing I can do to prevent that. I have tried desperately to minimize the emotional scars though. I’m not always successful but I always try. Sometimes though, she surprises me. Sometimes she doesn’t need my help. She creates the strength and courage she needs to get through this all on her own.

On the way to chemotherapy this morning Maya did not want to talk. I knew that she was nervous and I wanted to try and ease her fears. She wouldn’t have it though. Very nicely, she asked that I just let her listen to her music so she could “try and get brave”. For the entire twenty minute ride there, that is what she did. I don’t know what was going on inside her head but she was so serious. She was so deep in thought.

When we got there, she went in with a smile on her face. She didn’t hide behind me and she didn’t ask me to take her home. I could see that it was difficult at times and I knew that she thought about giving in to the fear. But she didn’t give in. For the first time in months, I saw my child again. Just like that, my strong little girl was back and my faith was renewed.

I realize she will still have difficult days. It won’t always go as well as it did today. But that’s okay. What I saw today convinced me that she can do this for another year and still be okay.

Yes, she is tired. She is so very tired. We are all tired. We have been doing this for quite a while now and she wants it to be done. I understand that. I want that too. But I am sure that, no matter how hard it gets, she will continue to fight. We both will, we all will, for as long as it takes.

Advertisements

Our New Cancer Journey

Maya has been having a hard time visiting the oncologist lately. She doesn’t want to go and she cries a lot. Once we get there, she refuses to go into the exam room. She cries when it’s time for any type of procedure. This is all new for us. Up until the last few months, she seemed to be taking it all so well. She never cried before, never protested at all. Emotionally, it seemed so easy for her. I guess I assumed it would be that way forever.

On the way home today I told her that we wouldn’t have to do this forever. I explained that she wouldn’t always have to take medicine and there wouldn’t be as many tests. I told her that there would come a time when there would not be so many visits to the doctor. She was surprised by that. She thought that this would be a large part of her life forever. I was so sorry that I never explained this to her before. Why didn’t I realize how important it was for her to understand that?

We continued to talk and she told me that she was sorry that she couldn’t be brave today. She was so sorry that she cried. She said she didn’t want to but that she just couldn’t help it.

It was so hard for me to hear her say that. I wondered if I had made her feel that way. I wondered if I had allowed her to think that, if I had somehow encouraged her to believe that. As I held back my own tears, I tried to explain to her that she is so brave. That she is the bravest little girl I know. I told her that it is okay to cry and that she should never feel badly about crying. I told her that sometimes I cry too and that doesn’t mean that I’m not brave.

As we talked, it occurred to me that there is so much I haven’t explained to her. There is so much I haven’t told her about her illness. I just never felt the need to. She was always accepting of whatever we had to do.

Maybe it is because she is older now. After all, she was still a baby when this all started. I have always told her only as much as I thought she could understand. It is clear to me that she needs to understand more now though.

It seems that we are beginning a whole new journey with cancer. I just hope that I am ready for it.

One More Year…

Throughout the day today I felt like giving up. I actually heard myself say out loud, “I’m done with this. I just can’t do it anymore”. Instantly of course, I realized just how ridiculous that statement was. There is no giving up. There is no walking away from this. I know that, even through my exhaustion and my disgust at what cancer is doing to my daughter, I will not ever give up. I will deal with whatever I have to. I will get my family through it. I will make sure she never misses a single dose of these medications because I know that they will make her better someday.

But still, how do I handle it all now? What am I supposed to do when my 4 year old child cries in my arms because she is in pain and her body hurts everywhere? What do I do when she lashes out at us? When she screams at us and then instantly apologizes through tears because she recognizes that she cannot control her own emotions? What do I say when she screams at her big brother because she cannot stand to be at the table with him while he eats? When she yells and cries because the smell of his food makes her so terribly sick? What do I do when she demands all of my energy, all of my attention? When she is unable and unwilling to consider the needs of her two brothers? When she screams that she wants a certain food prepared in a certain way? Then she cries because, even though she is hungry, she can’t seem to bring herself to actually eat any of it.

I don’t know the answers to any of these questions. In fact, most of the time, I think I am really screwing things up. I am convinced that I am making all the wrong decisions. I tell myself that I have to do better for them. I have to. The truth is though, I don’t know what better even means. I don’t think anyone in this situation does. There is no right way to handle things. There may not be any better way to deal with it. The logical side of me understands that. Still, I struggle with these insecurities constantly. I question myself constantly.

I have to accept that I cannot control this. I cannot take her pain away. I cannot protect her. I cannot protect any of them.

So, we plug along. We get through it. I remind myself constantly that this is what it will take to save her life. I tell myself that, as she finishes each round, we are that much closer to the end of treatment. We are getting there. We are getting closer every single day.

Just one more year of this. One more year.

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.

http://www.healingmaya.org/code/

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.

887127_4528423336664_1647336362_o

1

2

3

6

5

7

8

9

10

11

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.