This last couple of days has been a little struggle. Malia woke up the day before yesterday having sharp pains in her shoulder again, and just didn't want to get out of bed or even eat. But yesterday when she woke up she seemed so much better, she even went out with me to take our car in for an oil change and to get our key fixed, and had everyone in the waiting room just falling in love with her. She made a friend with this older lady, and was telling her everything about herself. The lady told me that she was the cutest little girl with her glasses, and has the most outgoing personality, and then Malia told the lady that she goes to the doctor all the time because she has a brain tumor in her head! The room became silent and everyone who heard her talking got a sad look on their faces, but the older woman just continued to play and talk to her. Malia just continued on talking, smiling, and showing off her dance moves (twirling around her little pink tutu). Malia gave that woman a big hug as we left! (Made a forever friend) She definitely has an impact on peoples lives wherever we go, and I am just so proud of her.. she is so inspirational and has no idea! When we got home a couple hours later her energy began to ware down, and the headaches set in. She cried herself to sleep holding her head, while I held her. And woke up crying. It is so sad to watch her squeeze her head because of the pain. We have 3 more weeks until her next MRI and Oncologist visit, and I just pray to God that her Tumor has not grown. Just the thought of it gives me anxiety, and makes it hard to swallow! Every time it gets close to having to put her back to sleep scares me, but the waiting part for a result that could change our lives at anytime kills me inside, scares me, and feels like the air is being sucked from my lungs. I know that this is just part of our life, we will always have side effects, new symptoms, MRI's, waiting, and changes... But no matter how many time we have to do this, it never gets easier! But what does is finding Hope and holding onto our Faith.[...]
To cope with my sickness, she cries.
She cries a lot.
She cries when she peeks in on me and sees me sleeping so soundly, so innocently.
When I scream from the pains in my head.
When my brother and sister act out, because she knows it also causes them pain.
When I cry on the way to the hospital, because I recognize the route.
Because I am only a little girl.
She cries when someone offers her condolence,
lying in bed at night, alone with her thoughts,
because her mind wanders where it shouldn’t.
She cries at the compassion of complete strangers.
For the loss of my early childhood,
when she thinks too far ahead,
at the unfairness of it all.
She cries because my dad is the most amazing man ever.
Because none of our lives will ever be normal again.
Because I don’t understand why they keep letting people hurt me.
She cries because she can count on one hand how many times I have smiled in the last week.
For the loss of all of our freedom.
For the loss of my laughter.
She cries because she can’t make it better with a kiss and a band-aid.
When she see me bleeding from my nose, like a scene out of a horror film.
Because there is an enormous elephant in my room.
She cries because she has no answers.
For my curls that have been shaved from my head to be replaced with scars.
Because she doesn’t think our house is safe or clean enough.
She cries because the world has become a scary germ infested place.
For the loss of all control.
Because she is tired.
She cries because she amazes herself on how strong she’s become.
Because I am so brave.
Because she loves me so much it hurts!
My mother cries to cope with my sickness.[...]
Just want to share.... Today at church while picking Malia up from her class, the ladies in there were telling me how much they love Malia and how sweet, cute, and outgoing she is. It makes me so happy to see how everyone she meets sees what I get to see everyday. And the best part is nobody at our church really knows about Malia's condition yet, because we just started going back just a few weeks ago now that Malia is doing a lot better. Its nice sometimes to just walk in a room and not have everyone look at us with pitty. I know if I were on the other end, hearing someone tell me that their sweet precious child has been diagnosed with an inoperable brain tumor along with a story about all the things Malia has had to go through.. I too would cry and give my condolences, because no matter how its put... it is heartbreaking! I just Love to see people appreciate her and see her like every other child in the room, and every one who meets her and has the privilege of sharing a conversation with her fall in love! She is so strong, brave, and intelligent... And I believe God has chosen her for a reason... She has the will to overcome this, and something great has to come from it. ( The world is so blessed by Malia, and she is teaching lessons ) When we overcome this, she will grow up to be somebody Great! I feel it in my heart [...]
today is just an ordinary day, so in our world that means great! It has been quite a while since I have been on here for an update, but the good news is that Malia has not had to go in for any complications for weeks now, and we just feel so very fortunate. I have started contacting all different places to spread awareness on Malia’s condition, and here within the next couple weeks the Pediactric Brain Tumor Foundation will be putting out Malia’s story, so we are so excited to see what they are going to put together on our sweet girl to raise awareness! On top of that we will be finding out soon if she will be getting her Wish from the Make-A-Wish foundation, and she just got accepted from Feel Better Friends to have a personalized doll made that will look just like her that has removable hair for when she starts Chemo! They also are going to put all of her scars on the doll with glasses just like her, so I am super excited to see the look on her face when she gets it! We pray every day for a miracle… and as long as we are all breathing I will not stop trying to find a way and doing everything I can. Our next MRI is the 4th of September where we will find out if her Tumor has gotten any larger, and I will try my best to keep up the updates :) [...]
The kids and I had the chance to participate in the BT 5K (Brain Tumor Awareness Race) here in Spokane yesterday, and such had a blast! Even though we came in nearly last we had so much fun, and Malia walked the last half, and ran through the finish line. The turn out was good, I just wish it was more publicized like all the other runs that went on here this last week, but I will do my part in spreading the word for next year! Things seem to be getting better here at home, and I think our family is starting to kinda adjust to all the changes that have been thrown at us in such a short amount of time. I am so proud of everyone in my family, especially Malia! And the slumps of anxiety, and bouts of sadness that I have, have seem to calmed down as well. We have the chance to enjoy every moment with one another, and that is all that really matters... If Malia can be Strong, Brave, Humble, and Just a little Bad Ass Fighter everyday, We all can![...]
We had another doctors appointment today with the kid's family doctor to check Malia's vitals for her next MRI. I am so proud of how far she has come, and how she can put a smile on everyone's face everywhere we go. Her personality has changed so much in opening up to people since all of this started happening. I am so grateful that her doctor truly loves her, and treats us like we are her family, Malia loves going to see her. We had to discuss about the on going episodes of shoulder pains, and now added on to everything else her sever headaches that she has been having for the last week. It seems like we have been in the ER at least once a week since we have been home from our last stay at the hospital because of her pain. But even the ER cant do much. Its sad when I feel safer being at the hospital sometimes because I cant take anything to unexpectedly happen to her at home. I have already had to watch her hang off the edge of life, and that is always in the back of my head freaking me out. Everyone always tells me how great we are handling all of this, but the truth is, I find myself avoiding people everywhere I go just so I don't have to talk about our situation out loud, and it is something I don't do on purpose. Beside talking to doctors, I think I have lost my social skills. I guess I have put myself in my own world, I know we are not going through this alone, but a lot of people don't understand how this all feels, and I don't expect anyone to even try. Malia's doctor told me today that I should look into a support group for parents who are going through situations like ours .... I don't know, now that I look at myself, maybe she is right![...]
Today has been such a long, but good day health and happy wise! Today we went in for Malia's eye appointment to see if anything has changed from a few months ago, and unfortunately it has. Her right eye is getting worse so we need to get her new glasses when we had just gotten these ones just a couple months ago. Her eye doctor is the one who knew that something was wrong with Malia and ordered the MRI that found her tumor. The words she use for Malias depleting eyesight today was "I am Baffled" because the tumor where it is placed should not really be causing the eyesight to go, but it does cause the head tilt and double vision, but she said I guess in her case it could be. Her eyesight is really bad, especially for her age. I am at a loss, because it seems like every problem that Malia has is rare and "Baffling" because every doctor she has, has no real or logical explanation, and no answers on how to fix anything! I am at a place where I don't even know what to do myself. I just want her to be able to heal some more and enjoy the time when she does feel good before I let them open her back up and take out more samples of her tumor! I know eventually we are going to have to, and she does have only a few more weeks until her next MRI, so I guess we will make the decision around that time. I do have to say how thankful I am to Dr. Shea, Malia's eye doctor, because if it wasn't for her we would not have found the tumor when we did, and could have found out later on in a worse way to were Malia could be suffering from worse effects... So Thank You again Dr. Shea!!!
(Even through all of this, I still have faith that it will all work out in Malia's favor, she is our little miracle and will beat whatever odds are against her. Mother's instincts are a powerful thing :) ) [...]
Today started off to be a really good day with Malia, she woke up happy as ever! A short time after her Grandma came over to visit she started to scream in pain. It lasted for a good hour before she could calm down. The scary thing about this episode of shoulder pains, is that is has moved to her right shoulder now too. When this happens to Malia, there I nothing that I can do besides hold her and wait for the pain to subside. These shoulder pains that she has been having is one of the reason her oncologist is wanting to check her spine for tumors, and I cannot get the thought "what if" out of my head. Her neurologist tells me that it could be caused from the shunt tube moving around in her stomach, I just don't understand how that could cause such sever pain. I hope he is right though, and it is just her shunt! We still have a month from today until her next MRI. If nothing else, back to the ER we will go.. (just keep living by faith)[...]
I sit here staring at the calendar on the wall. All day long the phone has been ringing off the hook, one doctors office after another from Malia's Neurologist, oncologist, family doctor, Pediatric optomoligist, physical therapy, and the surgery center. Lets just say, our calendar is filling up fast! This is just part of our waiting game now I guess. Even with Malia's glasses on she is saying that she still cannot see, so I am hoping that at her appointment on Monday, they don't tell us that her eyesight is getting worse, because something as small as even a headache would make them open her back up to retrieve another biopsy. Its almost torture as a parent to have to wait for something else to happen to proceed with the next step, because I don't want anything else to have to happen to her. Her next MRI is on the 8th of next month, and her oncologist is wanting check her spine to make sure that there are no lesions growing in, or around her spine as well. I want to find a blank space on this calendar to just have a day to take my kids somewhere where they can run and play together, and just enjoy the sunshine with no worries. that is my goal for this month; make one special day for my kids to spend together.... I do have to say that this last couple of days has been pretty amazing without any problems. Malia has been so energetic, playing, running, and back to her old self. I just wish I could freeze time and stay right here for a while, I'm not saying forever, just long enough to feel like things were before, when worries were little, like what to make for dinner, or what bills need to be paid when. But that is just me being selfish! I am really thankful for this time that we do have, and I am defiantly not wasting a moment of it, and as long as my kids are smiling and happy, that is really all I can ask for.[...]