At least it's not cancer. ..

I hear myself saying this about many things.  3 years 7 months and 2 days ago the way I reacted to so many things would have been so different.  A week of daily unforgiving back pain lead to x-rays which lead to an unofficial diagnosis of scoliosis and kyphosis (hunch back). I'm sure that many years, months,  and days ago that would have been traumatizing.

Now?? It is par for the course.  I'm relieved it's not the cancer forming in the marrow, lurking,  waiting to overtake her system again. Sad,  that she will have yet another obstacle.  However,  I am reminded daily she's winning.  In our world minor and moderate health issues are just the bonus of winning a battle with cancer.

The major battle is won so far.  However, once in a while, a rogue rebel feels the need to show up and start a stand off. I know though, that just like every other battle she's been handed.  She will kick ass with grace, strength, and her sick and twisted humor (she may get that from her mama). For example, she said just think if I get surgery and have a rod in my back I can really be the girl of steel and dress as Supergirl for Halloween.

Cancer the gift that keeps on giving. . and if you don't laugh you'll cry. Since there's no crying in cancer guess that leaves us with our twisted sense of humor.

The 3 A's of September

Awareness, Anxiety, and Assholes!

You probably just looked at that like what?? Yeah, I said it.
Let me explain!

Awareness is so important. So many people don't know how REAL Childhood Cancer could be! It isn't a word, it isn't just something that happens to someone else. It happens it happens to families just like you and me! Three years ago in September, I would have told you that you are nuts! Cancer won't happen here!!!
Then less than 4 months later it was me and my kid! It was my family affected. We were 1/46. Luckily she has not been one of the 7. However, there have been many days when we log onto Facebook and see the names shared and start counting because that is how many kids we followed and connected to that became 1 of those 7.

No one should ever be able to say wow today this child, that child, so on and so forth until you realize you knew five or six of those seven. Then it just leaves you wondering who was the other one or two you didn't know. It is sad when you know that many kids. Something has got to give! We need more awareness for our children, more funding!!

That leads me to anxiety. To raise awareness we begin sharing facts. The facts are scary. The facts are that at any given day, my child could be the one to relapse. The fact is they give her a great 5 year cure. However, they didn't tell me how common those chemo side effects truly are.I am not saying they lied. I am just saying they should have told me 98% chance your  kid is going to leave this scarred physically, emotionally, and mentally when this is "done". That is our kids reality. They will suffer chronic health conditions, secondary cancers, learning disabilities, and possible PTSD. We need more than 4% of funding going to these kids so that one day, their "cure" if there is one doesn't kill them and their dreams!

The last of this post I guess I could have been nicer.. maybe they aren't assholes. Maybe they don't know better. However, the people that just don't care. I am not saying you must share or like every post. It seems though that some people decide to compare my grampa had cancer, my aunt had cancer, oh we need the pink in September because Breast Cancer is important. Oh it is, it is, but it gets a whole damn month and usually 2 or 3 leading up to it. Childhood Cancer isn't even just one disease it is several different cancers all lumped into one, sharing an awareness month with a 1,341,227 other causes (yeah, I know, that is not the real number). LET US HAVE OUR GOLD. LET US HAVE OUR SELFISH MONTH. LET US SAY HOW MUCH IT SUCKS!!! Listen and help us act. Share our post, please don't hide them and say oh it is too hard.

I am sorry was that picture hard to imagine?? Well guess what that wasn't imaginary or a what if to us. That was our reality and still is. Always will be. Before cancer, I worried about my daughter with boys and parties and getting mixed up with the wrong crowd. Now I worry about blood test, bruising, strange belly aches, and the R word. I hope that no one ever has to face this but this is why Awareness is so important.

46 Mommas

I just got home a couple days ago from a life changing experience. What was that experience you may want to know? I could say it was shaving my head. However it was not just the shaving of my head. It was the experience as a whole with a great group of women. These women have walked in your shoes, some have children still fighting, some were survivors themselves, others had children that lost their battle. There were others there that just felt so strongly for our children they were willing to stand and shave by our side!

It is amazing the emotions that this weekend brings about. For me being with "my team" was amazing. I felt like I had met long lost sisters. Do I think we all think alike and would be besties in any other circumstances? I think that in other circumstances most of us would have never crossed paths but I am glad we did even if I am sad on the circumstances. As I was sitting up there in my chair waiting for the shave, the emotions came.

It was not emotions of sadness, or happiness, it was so overwhelming I do not think I could explain it to you why I was crying. I was crying because these were my friends who have shared so much of my daughter's journey with me not just by being by my side but by watching their child fight the same evil monster. It was that really I had never thought this day would ever happen and now not only were we meeting we were shaving our heads in solidarity!

An amazing photographer I have known for about a year that does so many amazing shoots for special cancer families was there. We have become much more than facebook friends and I can't even explain the connection felt there. For her to be the one photographing me at such an emotional moment. I just can't explain how that felt. To have her hand on mine while I thought about my daughter's journey and how far we had become, indescribable.

Women that we talked with that had lost their babies, who explained they are not jealous of us for having our children. This was not because they didn't miss their child or don't wish they had survived but because they know their child no longer has to fight. There is no envy among us cancer moms, yes A.L.L  has one of the "best" "cure rates". However, A.L.L also has some of the longest harshest treatments. There is no comparing one cancer to the other, because in general they all suck. We will never have the child we started with, they will forever be changed. We all I think got to hear and say these words out loud to each other this past weekend.

Another thing I realized this weekend is IT WILL NEVER BE OVER. I used to look forward to the end date. The date we would be done. I realize I will never be done. Many times this thought poked through this weekend, not just by me but by other moms. It was comforting to know I was not alone. It is not just about raising money for research. It is about the comradery, comfort, and compassion. I am thankful I was able to be part of this experience and do not intend to end there. I hope that one day this event makes it possible for cures to be found that don't kill our children in the process of killing the disease.

IT AIN'T OVER TIL CANCER IS CURED!!

Tonight my husband asked me when will it be over?  When will you be done? He was talking about my "projects". Simple enough question for most.  For me it was a realization.  I guess it is something I have always known inside but never vocalized.

You see I will never be done unless there is magically a cure for childhood cancer.  The truth is cures take awareness and money.  The truth is we need people seeing gold ribbons and immediately going I know what that's for.  Why does knowing what the gold ribbon means help? ?

Money....sponsors.  I don't know if you have checked the actual cost for a cure lately but its pretty damn expensive. Just to get one drug through experimental treatment has such a high cost many of our kids are using meds that have been around for decades!!

Not only do we need cures we need programs for parents and kids! Families fall apart every day because of a child getting cancer. It may be a family in the shelter because the basic cost of living has become too muc. Too much unpaid leave not enough financial help whatever the case may be.

Other families are just so fragile emotionally..its just waiting for the last thread to tear. One more hospital stay,  one more setback, whatever it may be that causes the final rift.

These realities need to be painted for the unaware. Cancer isn't a cute little bald kid riding in a wagon. Cancer is a monster of screwed up lives,  tears, and chaos as we pray to make it through tje storm. Hurricane Cancer doesn't give you the chance to evacuate, it comes in with a whoosh of wind and enough water to drown you with no FEMA to save you.  Your National guard is the doctors and nurses that get you through the frontline still living and breathing. 

Cancer never leaves,  never rests, and never takes a break. When cancer finally stops I will...until then. ..I will continue my fight for awareness and cures.

Reminiscing

Two years ago today, I was waiting on an ambulance to take my little girl down to Childrens' Hospital Los Angeles. Before this day I did not even know where this hospital was located. On this day I still had hope. Hope that when the Dr. did the test  the next day she would not have Leukemia. I prayed I would wake up and find out it was all a mistake. We took my sick little girl who had just turned 11 the month before.. who seemed to be growing up to be such a big girl.. to the hospital with so many unknowns.

Since then CHLA has become our 2nd home almost. I feel almost as at home on the 4th floor inpatient as I do in my own home. Sad in a way. I guess it just means the nurses do their job in making us feel comfortable and at ease in their care.  The 5th floor outpatient tower, is a pain in the butt, to be honest 2 years of doing that and I still wonder sometimes where the logic is to the way things are handled. However, in the end my girl is thriving and I guess that is what matters.

My girl is no long that little girl I took to the hospital so sick 2 years ago. Yes she is still in treatment, but she is now 13. THIRTEEN, she is a TEENAGER officially. So crazy to think that. Crazy to think how much she has lived in such a short life. Crazy to think she will be grown and off to college before I can blink. However, this journey has taught me to enjoy this time more. Even when she is being her sassy self and driving me nuts!!

Since then the reality slapped us in our face. Today is bittersweet I celebrate the life my daughter has gotten to live and realize this was the last "normal" day we would ever live. I hope that one day our life will be more normal but know that it will be different no matter what. I am very blessed and I know this. This journey has taught me so much but some days I wish we never hard to learn it.

What a day..

I woke up today with a huge amount of anxiety... I went back to work for the first time in 5 months! It hasn't seemed like 5 months has passed but it has. The last time I was at work was the first week of the first semester this year. It is now the 2nd week of the 2nd semester. Work went well, I showed up in homeroom to work with "my kid". Did his morning activities with him, told him I was back for the semester. Only to find out... I wasn't. I was switched back to my "first kid" a boy I started working with in 2010. So although I was a bit disappointed on the way I found out. I am glad for the fact I am back with my first kid.

It was a fairly easy day as far as work goes. A lot of hellos and how are we doing. It was nice. We watched movies/documentaries in several classes. That was nice. However, my body realized its not used to full days and sleeping during documentaries by staff members is frowned upon. I am thoroughly exhausted.

However, it isn't just work lately that has me emotional. This week in January will forever be emotional for me. January 18, my life began changing 2 years ago. This day 2 years ago I was at home with my girl with what I thought was mono. The next day we heard the words leukemia. Although her actual diagnosis was not until Jan 24 because we had to get it confirmed by the dr.s at Childrens.

Its amazing to think what the last two years has brought to my life. Some good some bad. Some days I am angry, others I am just thankful for the opportunities given to us and the fact I have my girl. I hope that 1 year from now I will be able to update shes been off treatment for 7 months and that she is cancer free and doing amazing still! 4 more months of chemo and we are DONE!!  I cannot wait!!!

How man F words can Cancer Bring

Well there is the first 4 letter F word I am sure I do not need to explain. Then there are a few others like fever. Well today it is FLU. Luckily, our home has stayed flu free. However, it seems the flu season is pretty bad this year so we all need to get our flu shots. So that is what is on the agenda recently.
Shots, shots, shots, shots... Everybody!

Sounds fun right?

Not really, but hopefully it saves a life in this house and at the very least weeks off school due to the flu.

I know many of you may think, what's the big deal? It is just the flu. Let me explain. The flu can be a miserable experience for a "healthy" child. It can even be deadly 18 kids have died so far from  the flu already, I think I don't wanna take those chances.

For a kid with cancer when our kid gets the flu it = fever. Fever = automatic admit to the hospital usually, sometimes if counts are high enough they will let you go home. However, illnesses can knock their counts down pretty fast so it usually means an admit until they climb a bit. Since our kids have no immune system it also means it takes them even longer to beat it. It won't just be a couple days off school, it could be weeks. Last year RSV meant a month off school for my kiddo.

What does this mean??? If you are sick or think you are stay home! If you think you can't afford your sick days imagine those that may work with you that may have an immune compromised person at home. That couple sick days could mean way more than that for them. Wash your hands, cover your cough/sneeze, use sanitizer.. and all and all just use common sense to keep those around you safe.