bald is beautiful
our story began on july 2, 2004. i haven't gone in depth about that because i have been waiting to tell it during childhood cancer awareness month. which, if you are wondering, is september! i won't be telling our story from the beginning. it's not that i don't want to, it's just that, the story i'm about to share is a bit more powerful to me. when alyssa was diagnosed in july 2004, she was 16 months old. she went in and out of brain surgery, like a rock star. we left 3 days later. it. was. amazing. she got her port put in, ear tubes [she had a history of ear infections] and within a month was starting chemo. was on chemo with breaks for 18 months. had a year off and during that year, the tumor grew. got back on chemo. this went on for 5 years....
i used to write a blog called alyssa's blessed journey. in that blog i wrote about our daily struggles about living "under the cancer umbrella" i shared our hopes. i shared our fears. i shared what encouraged us. i also shared what kept us going. during the first 24 hours of our journey, is when i first found God. it is when i first really heard him. it is when i surrendered my life to him and never looked back. that blog was where i shared it all. i wrote that blog while we were living and breathing treatment. but, then, i stopped.
to be quite honest although yes, our lives have everything to do with our daughter's brain tumor juvenile pilocytic astrocytoma of the hypothalamus and we will never forget it and never be able to just pretend it's not a part of us, i found it overwhelming and consuming to not only live it, but to also write about it. it became my life to the point that no matter where we went before anyone would even say hello, the first thing out of their mouth was "how is alyssa? when is the next mri? how is treatment? does she get sick?"
i know they mean well, but come on folks, don't you think we have other things going on besides chemotherapy and cbc counts etc? we do have a life outside that hospital. besides that, i became obsessed with finding other families who were also going through what we were and looking for any kids who had died because of the tumor. alyssa's tumor is rare. it is also benign and, thankfully, my research always came up with a very high survival rate. in fact i never found a death. the only one i ever heard of was from her doctor and that was a story of a girl who they didn't catch the tumor in time. very possible because of the slow growth, it sometimes does not show signs until it is almost too late and if you are not paying close enough attention or do not know the signs, a parent could very well brush the symptoms off as just another headache. in fact, had i not known the symptoms, last april we could have very well lost alyssa. the doctors told us [after of course] she would have only lived another week had i not made the call when i did.
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| her 7th birthday. surgery was exactly 28 days later |
see, she had made a slight enough change that too me, was not settling well in my spirit. and i couldn't shake it. headaches that would make her throw up and she'd need to lay down with a cool rag on her eyes and she couldn't stand noise [i suffer from them so i knew it was most def a migraine], she was waking up at the oddest times wanting to eat, but she would take 2 maybe 3 bites and be full, sleeping all the time, more than usual [she was in kindergarten, so i knew school was tiring with all the playing, but she'd sleep as soon as she'd get home and not want to get up for dinner], then even if you touched her head just the slightest little touch she would burst out in crock tears [brushing her hair was a nightmare]. that was my last straw. something was off. very off.
i called, we took her up that day [i made daddy go, because i just knew she'd be admitted - i thought a shunt would be put in to take pressure off her brain, nurse and i thought maybe cranial pressure for sure so excess fluid and would need to be drained. i stayed home to pack bags and set up care for the boys. our best friends would keep them while we were with alyssa. he went to the clinic, they had an emergency mri because it would show if it was indeed fluid causing the pressure. and we'd proceed with the drainage tube, or shunt, whichever they felt would be the best option. i got a call about 1pm. i was on my way to my friends house to drop the boys off. alyssa had just gotten out of the mri, it went smoothly and tony was with her waiting for the doctor who's name is ironically also, alyssa. i love it. i got to emilee's house and the boy's ran straight to carson's room after quick kisses good bye. [they had no idea what was going on. they were used to daddy or i going to birmingham with alyssa for chemotherapy or mri's, so to them, this was a treat. a sleep over with carson? score!] right then, my phone rings. i knew it was tony immediately because of the ringtone "love song" by the cure.
"hi babe. i'm just leaving ems' house. are we staying in the hospital or a hotel? does it take long to get a shunt? what do they do?" -- i ramble on without even letting him talk. ----- silence --- great. did i lose connection? [look at phone, nope. still connected] i listened again. still nothing. so, i speak. "babe? what's wrong?" he takes a long breath and with a shaky voice he barely gets out "she needs surgery. tomorrow. you were right to worry. you saved her life." i stop in my tracks and my mouth is about on the floor. i can feel the rush of blood entering my face. i need to sit. i am hot. all over. my heart speeds up. [i was expecting this. somehow i already knew. a calm washes over me.]
"i will tell emilee. we will have everything under control as far as the boys are concerned. we won't need to worry about them. they are in good hands. i'm heading up there as soon as i talk to ems. i will call you when i'm on my way." we hung up. [of course after saying the important i love you]
[i can't believe i was able to talk at that point. my voice was calm. it did not shake. i did not cry. inside i was. inside i was falling apart. but i was being controlled by something else that was not me. ohmyword. GOD WAS WORKING THROUGH ME. HE WAS GUIDING ME AT THAT VERY MOMENT TO HELP MY HUSBAND KNOW THAT IT IS ALL GOING TO BE OK. BECAUSE IT WILL. OH FATHER, IT REALLY WILL, WON'T IT?]
so, i go tell emilee the new scoop, this one night sleep over has just become much, much more and i have no idea what to do. [i mean, we are military. we don't have family that we can call up to ask if they can keep the boys for an unspecified amount of time so we can be with our daughter while she has brain surgery to SAVE HER LIFE! that is a lot to ask of a friend. even if is a close friend. it's just not something you can ask of just anyone.] emilee heard my conversation with tony. when i walked in the kitchen, she already knew. she took one look at me and said "give me your house key. the boys will stay here for the weekend and we will figure it all out from there. " that is my friend. that is how she is. i didn't even have to ask. she knew i didn't even have the heart to ask her myself, and i didn't have to. it was one thing to ask for a favor of a one night thing. but for an unspecified time. unheard of.
because we didn't know how long the boys would be at emilee's house, i called our other very close friends eric and sheila [isaac and gunnar's "church best friend" ethan's parents] and they picked them up after the weekend and kept them at their house for the remainder of the time we were at the hospital with alyssa which ended up being 4 weeks. that is a long time to be away from your children. although, because most of it was spent with alyssa in ICU, it went pretty fast. the ICU is a fast paced place. i was wrapped up in visitation times [which are very odd hours] and learning about how her body was responding to medicine and how it was healing. it was a miraculous time to say the least.
her tumor had grown three times the size it had started off at. it.was.huge. it was shaped like a heart. the most amazing thing i have ever seen. we have always trusted that God would always guide us in our decisions regarding alyssa and the tumor. we don't want to say "ok, well, let's just do this or that" we really rely on God to tell us what to do. so, when her doctor came in and said she's going into surgery tomorrow. without saying "so, we have a couple of options..." we knew it was a done deal. then, we saw the mri scan and that was our moment of pure peace and comfort. it was as if God was whispering in my ear "this is my will. it is what is to be done. i will work this for good"
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| night before surgery, alyssa made her courage beads |
i trust our team with my entire being. they know us. they respect us. they are bottom line. the best in our state. in my book. there is no other team that can do a better job. period. they explain everything to us. they treat us like family. and, better yet, they treat alyssa like family...they explain things so she will understand them.
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| she takes her hello-kitty and is wheeled off to surgery |
surgery took 9 hours. straight. i.was.scared. i won't even lie. i was worried for my girl. we got phone calls through out the surgery for updates which was nice, every call meant she was alive. you have to prepare yourself for the worst. as bad as that sounds, you really do have to imagine yourself out of your body in case they come back one time to talk to you and it's not the normal phone call or you can sense something is wrong. it's the most morbid feeling you will ever have in your entire life, but it's something you have to do. i simply pray that if God decides he needs her in heaven, to please take her before she feels any pain. then i say a prayer for me. for him to give me the peace that passes all understanding and then add in there that i'd really appreciate it if he wouldn't take her just yet because i'm not quite done raising her....thankfully, he's answered my prayer to allow me to keep her.
we waited. and waited. and waited. and, we waited some more. till finally, we got the call to meet downstairs at the mri waiting room. we could hear some talking down the hall and wouldn't you know alyssa was just a talking away to the nurses while they were pushing her on her bed. it was a great sight to see. she was drugged up of course and being so very silly.
they got 90% of that tumor. it went from the size of a grapefruit. yes. a grapefruit to the size of the tip of your thumb. look. what a difference, right? it hasn't changed since. well, it has changed slightly, it has a teeny bit of fluid in it and it grew in one area and shrunk in another so it evened it out. didn't change the shape of it. weird. so, it's the same size. september 1st marked 17 months since a successful surgery. no chemotherapy. no tumor growth. we were "graduated" to 6 month appointments [mri's every 6 months instead of every 3] and we are enjoying this no chemo break.
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| she did not know where to look |
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| asleep, in icu about 5 days after surgery |
surgery claimed alyssa's left eye. the vision, not the actual eye ball. and, her vision in the right eye is quite bad. think of it as tunnel vision. can you imagine living like that? she is considered "visually impaired" or "partially blind" it does effect her. but she manages quite well. there are certain times that we pay closer attention to her and make sure she knows to pay attention to her surroundings, but more often than not, she gets used to her environment quite fast and makes it hers. she is not a fan of big crowds as you can imagine and when walking, holding hands with someone makes her more at ease so they can warn her if there is a curb in case it's not marked properly. you don't notice these things until you learn to "need" to. she reads books, she writes stories, she plays outside, dances, swims, you name it. she does it. she can't run [although she would love to] very much because the medicine she takes can dehydrate her very fast. playing contact sports or anything that has to do with a ball is out of the picture. she loves cheerleading, ballet, and singing. i love her go getem' attitude.
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| in icu she got her hair braided |
we don't treat her differently than we do her brothers. i confess i used to baby her. i mean, seriously? do you really expect me not to treat my little girl who has a brain tumor like any normal kid? sorry, i have no idea if what tomorrow is going to bring for her. what problems will arise. so, let me do this. i don't care if i spoil her. until i noticed that she was expecting things from everyone. that got cut off real quick. ooh kids can pick up little habits so fast!
so, she is 8 now. i understand why some of the moms that reached out to me when we first got diagnosed no longer update their blogs. they too have moved on from that life. you have to eventually. how will you ever grow if you don't venture? like i said, it will always be a part of us. forever. but, do i have to share it with everyone - all the time - in every conversation? no.
it's about balance. i want alyssa to stay grounded. is she special? you bet your life she is. does she know it? eh, she knows she's a child of God. she knows that she's loved. she knows that she has a brain tumor and she can't see out of her left eye and she needs a magnifying glass to read. she knows she needs to make sure she raises her hand if she doesn't understand something in school. does that make her any more special than anyone else? no. i don't want her to let anything get to her head. her conversations don't need to be "hi, i'm alyssa, i have a brain tumor, what's your super power?" so, yes, she is so special she rocks the house, but, the difference is she has no clue just how special she really is.
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| 1 month after brain surgery, alyssa graduated on time with her kindergarten class! we were so happy for her and it was such an exciting time to actually see her attend this event! she was showered with hugs and we were over joyed for her. this was by far one of the happiest days we had in a long time! first grade was a success and second grade has been wonderful so far too! nothing has stopped her. cancer may have taken her vision, but it has not taken her drive! |
