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.

Mono = Cancer ... Right??

Okay, so I will just tell you LOGICALLY I know this is wrong. However, in my world it is totally how my brain works. I have been battling something for a bit now. Last Saturday until Tuesday I was sure it was just allergies. By Wednesday, the burning in my throat started, and I thought hmm maybe not.

Thursday morning, I went to get checked. Strep culture came back negative, but the Dr. looked at my throat and took another culture to send to the lab. She started me on antibiotics and steroids. She also asked me to come back on Friday, to double check my throat and make sure it wasn't so swollen that it was blocking my airways. My daughter, joked with me, Mom guess what now you get a steroid week, you are gonna be hungry and cranky!!!

Friday morning I went back to the Dr., he started me on rocephin and did a test for mono. I know this is probably routine for most of you. However, this is the exact same routine we went through almost 2 years ago with my daughter and she didn't have mono she had cancer!! I texted my husband and said they are testing me for mono... he called me back and said that doesn't mean you have cancer right?? I can laugh about it now. The truth is though.. I found myself praying for mono again. The Dr. came back and let me know it wasn't mono and to keep taking my antibiotics and steroids, and my counts were fine. This was a huge sigh of relief and I am glad that the Dr. had the brains to tell me this! (BTW same Dr. who kept following my daughter and allowed her DX as quick as it was)

So yes LOGICALLY Mono does not equal cancer, but in our crazy world it just might.

Tragedies and Sadness

Today a gunman went into a school and killed 20 school children. It is tragic, it is sad, their classmates had to  witness things children should never have to witness. Newtown, CT will never be the same, the staff at that school will never be the same neither will the parents of the children who are gone and the children who survived.

BUT WHAT IF?? 7 children a day were gunned down each day or make that 46 and only 7 of them died. IT WOULD BE HORRIBLE RIGHT?? 46 children are diagnosed on any given school day with a form of childhood cancer, 7 of these children will die. The difference, it could be prevented with more awareness, more research and maybe even cures!! The difference is we could help control this by urging law makers to give more money to research. The difference is major corporations could sport gold ribbons on their products YEAR ROUND or even for ONE MONTH.

Why don't they? I have heard many reasons and the truth being most of the reasoning Childhood cancer is depressing. It is! It SUCKS!! My kid has gotten chemo for 2 years running through her growing body, hoping in the future she doesnt end up with cancer from her chemo, or heart problems, or hope that her bones regenerate since it has literally been killed off by some of the meds she was on. It is pretty freakin depressing!!

I keep hearing the news mentioning PTSD, guess what?!! Our kids, not just the ones diagnosed but their siblings as well as us parents, we are often diagnosed with PTSD!! Cancer changes your family, forever and always. Life will never be the same. You will never feel "safe" again. When I hear about a child who has died from a setback, relapse, chemo, infection, whatever it may be... my mind goes to what if.  I wonder often when my child is in school if she is safe. Sadly the life of a cancer mom is extremely close to parents who have gone through this. One day we woke up and expected our kid to go to school and do what kids do and instead they were given the diagnosis of cancer. Cancer is a killer that takes 7 of our friends a day, and adds 46 more moms to our cancer mama club a day. It shouldn't  happen but it does everyday. What will it take for us to get peoples attention??

This all being said my heart hurts for the families effected today, I just felt the need to put my feelings down.

A week of Amazement.. maybe a few days extra

This week has  been a large amount of amazement in my family, especially for my daughter. The amazement began with an old high school friend who is more like family. Her mom offered to make it possible for my daughter and myself to fly across to see the ACCO tree lighting in Washinton, DC. To many of you this may mean nothing, to us it meant everything. My daughter as well as many of my friends children had a ribbon on that tree. When I walked in I guess I pictured a tree with a few gold ribbons, instead I found a mountain of gold ribbon, and then it hits you. These are children who have fought, are fighting, or have lost a battle to cancer. At that moment it becomes overwhelming, and heartbreaking, yet comforting all in one moment.

Before they light the tree they allow the families and fighters to say a little something. I think this was the best and worst part of the night. The best because you realize you are all fighting for the same thing, A CURE!! The worst because some families will never get their cure and their children have already lost their battle, some months ago, some years ago, but they are all there to speak how important awareness is. The other thing that hits so hard is that we were in the middle of the capital of the United States of America, yet you don't see political figures that should be there speaking on behalf of our kids. These people should be finding us a CURE!!!! Cancer is the leading disease cause of death of all children under the age of 15 in the United States and NO ONE that should have been there trying to save them was. This has got to change and I am going to do what I can to change it! This was a new motivation for me.

However, this was just one part of our experiences recently. Our other experience was through Make-A-Wish. They choose a few local families in the Los Angeles area to participate in an amazing wish reveal. My daughter's wish is a trip to Italy. The reveal was AMAZING even more amazing than we could ever dream. The fact so many people came together to make my daughters dream come true and the way they treated her and our whole family was beyond words.



It started with a trip in a limousine which made both of my children EXTREMELY excited!! Included was an array of beverages, sparkling cider, soda, and water. They also included plenty of candy and snacks for my children's enjoyment. After arriving at The Grove , the venue where the reveal would take place, we were met by a Make-A-Wish employee and volunteer with our next stop being Sprinkles' cupcakes. My daughter is a cupcake lover so this was a definite treat for her. My kids enjoyed their dessert before dinner, and it was exactly as it should have been. As we walked around the Winter Wonderland that is The Grove at Christmas  time, we were brought to the area where it would all be taking place and seated.

We sat and I see a huge backdrop that reads Kinley Goes To Italy, and the tears were hard to control. This really cemented this was all for my girl. We were serenaded by Italian music and watched the magic of Christmas around us. As the festivities began and local radio and television personalities helped tell about Make-A-Wish and my child, the tears began to flow. My daughter had to tell a bit of her fight and she told how she appreciated her family for helping her through all of this, and the tears couldn't be stopped. I was in awe of my girl, and everyday I thank the Lord for an amazing girl like her. She is everything I ever wanted to be and more even through all this.

My daughter then presented with her very own chef hat, which made her year! She made pizza with a chef from Amici in Brentwood. Many of you are probably like what? BUT, if you know my daughter you know she loves to cook and you will already know her number one thing to do in Italy is take a cooking class. Of course, she wants to see all the amazing sights also, but she wants to learn to cook authentic Italian food while doing this. After all of these festivities they presented her with SEVERAL gift baskets, some handpicked from the Italian cultural center in Los Angeles, others by her Make-A-Wish volunteers, then of course a very generous gift from the sponsors of the event Saputo Frigo Cheeses.

We were overwhelmed, the whole family by the whole event, and the magic of it. We hope to attend another child's wish reveal this week to celebrate with them and see the magic happen for another family. It was an eye opening experience, as well as truly amazing. I will forever be grateful to the people that made the last couple weeks happen, my friend and her husband, her mom, ACCO, Make-A-Wish, KOST, FOX 11 Los Angeles, Saputo, and The Grove. I know many of you may see this as a list of advertising, but I see it as a way for people to see the businesses and organizations that truly care for our fighters.

Anxiety and odd Symptoms....

I know I have not blogged in a while, if you notice I tend to slack in that area.

August was a devastating month in so many ways. Kids were lost. (If you didn't know this technically happens 7 kids a day equalling about 2300 kids a year.) These kids were kids of moms I had gotten to know. Kids who I was truly praying for a miracle for (as I do for all of our friends). These were not strangers  that I heard about. It hit us hard by hard I mean Kin and myself.

Shortly after that Kinley started experience horrible side effects from her chemo. These included memory loss, headache, dizziness, nausea. As all that healed we brought her home and altered her school schedule. However the symptoms didn't go away. Kinley was still having "episodes" that to us looked like seizures. We ended up admitting her on Wednesday for further testing.

Since wednesday she has had 2 EEG's and waiting on an MRI. They were not seizures.They are thinking its probably anxiety,a s today she did not have many episodes and she is describing the symptoms she is feeling an that is what they seem to match. That being said, now that we  know the facts I will really tell you how I feel because as this is all simple and clear cut my feelings are not.

For the last month I have missed my daughter. Many of these issues are causing a change in her personality and making it hard for her to function. If you know my family, you know we are sarcastic and man times offensive to some. However, it is how we have dealt with this all without killing each other;) Anyway I think besides not knowing why she was having these episodes and not knowing how she would be when coming out of one (Sometimes her speech would be affected sometimes her walking.) this is the difficult part.

I feel like I am about a split second away from losing it , pretty much 24 hours a day/ 7 days a week. I am doing my best to keep it together, and put on  my happy face. I am not doing too well. To be honest if I am not dealing with her I tend to be online finding out more information about what could be wrong. In between all this I am pretty much in a fog. Its been weeks since I got a decent sleep. It has been even longer since I have had a whole day where I am not worried about her.

I hope now that we have started meds we can get back to the "real world". I know Kin misses her friends and wants to be back at school. I hope that she can keep her mind from racing and she can stop leaving me. ( That is what I call it when she has her episodes). I stare at her with her eyes wide open and lifeless as I wait for her to join me again and it breaks my heart.

Last night I saw her avoid an episode as she rocked, and cried, and scratched herself because (it felt better). This was I think even more painful. I know the internal feelings of an anxiety attack. They are horrible but to know she has pretty much felt that racing for weeks and has not been able to stop it breaks my heart. I miss her, I miss my best friend.

If I could have one prayer tonight. Heal my baby girl and let me have her back. I miss her so much!

I miss my family, every hospital stay separates us, causes crazy amounts of stress, and makes everyone anxious. I want us to all be home TOGETHER!!!!