WARNING!!!
Late ,straight from the broken heart of a sad, mad but still smiling mama , kinda post....
Life sucks , you know that?
You go about your business, raising 4 boys, along with a dog, a couple of cats , a husband, you go to church regularly , talk to God all day long as He was sitting by you , just live life. Then one day ,WHAM!!! Your world stops turning round. "Your child has cancer ..." "Hmm, I didnt hear you right ! Cancer? Try again...That only happens to others... Not my kid, not possible .Check again!" "Look at the scans, see this white matter there, about the size of a golfball, in your childs brain? That just shouldnt be there . It is a tumor , more than likely cancerous . Sooooo, in a couple of days , we will be opening your child's head , cutting thru his skull and remove that sucker, it will just take a whooping 7 hours at best , oh and we need you to sign a consent for blood transfusion , more than likely he will need it. And when he wakes up , there is great chances that he wont ever be the same again. There is this thing called post fossa syndrom, it happens to 1 kid out of 4 ,going thru this surgery... It could manifest itself with as little as your child not talking for a couple of days, to him being basically in a newborn state physically ( no talking, walking, controlling bowels , nor swallowing...) while still understanding everything... But dont worry we will do our best taking care of your son...." Well now that you said that , I feel so much better!!!! ( NOT!!!) ....
Surgery is done , everything went amazingly well, tumor 99.99% resected... Son wakes up talking, no need for shunts , perfect scenario... Pathology comes back , no big surprise , it is cancerous ... Since , the oncologist had already dropped by a huge notebook about brain tumor, treatments etc... Guess they knew b4 the lab did!! Even though the tumor is "all" gone, son still gets to go thru all the exciting treatments that go along with having cancer... Only "preventative" , just maintenance chemo, they said , for a year and you are home free... One more step , spinal tap, just to make sure it hasnt spread to the spine , thru spinal fluid... WOOHOO, CSF is clear ...
Prognosis? a whooping 80% chance of cure ( survival after 5 years...) Hell, we are doing just fine then... 80 % , thats pretty good odds in my book...
Going home for a while ... Radiations start ... 31 sessions , everyday (but weekends) for 6 weeks . 31 days of getting up before 7am , dragging your 4 year old to the hospital to get his port accessed, get him sedated , his brain zapped ( good and bad stuff ) , his skin being burnt, his taste buds getting screwed up, his tummy messed up, his hair falling off... keep a line sticking out of his chest for days... Throw up, runs, lack of appetite , loss of appetite , all that result in having a feeding tube going thru his nose ,down in his stomach. Oh and if it comes out a little you can either push it back in with a good chance of running it to his lungs instead of his stomach which would lead to drowning with the next feeding or just pull it all the way out until we can place one back in ...( DUH!)
We get a feeding pump, doesnt matter too much ,since the formula doesnt care much for staying in his tummy anyways... your 2 year old starts to weigh more than your 4 year old, starts to run faster etc... pretty frustrating for the 4 year old, who tries to convince himself that no matter what he is still the big brother...
Rads are over ... Tube comes out...Break ! yeah! Son starts feeling better , we are actually having more fun than we have had in a while but dont get used to it...TIME FOR CHEMO!!! Time to let the poison flow... it's ok though , it will save our son, right? Routine MRI looks great , cognitivity ok , hearing not bad ....One cycle, hair all gone, more throwing up ... 2 cycles , just fine... 3rd cycle (thats the bad one, like the other ones were good!!!!) we get pretty sick on that one ... Weight still dropping , but the smile on our kid's face is still there ...( I would really be pissed by now!)
Too much weight loss, too many oral meds he wont take... Here come the G-button. That when they make a hole thru your kids belly and into his stomach and install a tube thru there. It looks like an air mattress or beach ball plug from the outside ... Such a life saver , believe me... On the inside it looks like a small mushroom with holes. How do I know? The surgeon thought he would impress me , rather , shock me and brought a picture to show me after surgery... I ruined the moment for him , because nothing impresses , i mean, shocks me at this point ... Next routine MRI ... Something is suspicious on the spine, Scans are sent to central review ... They are in Colorado for a conference, so it took forever to get that back ... While they are all having a good time out there , 3 weeks go by , without chemo ( by then ,the poison is welcome in our book !) . If something IS suspicious, dont you think they would hurry and get him back on some kind of treatment ASAP ??? nahhhhhhhh...let the cancer have free range in my son's body...
Finally ,results are back...Suspicious spot on spine is nothing BUT they saw something on the brain which escaped our doctors here at home, go figure! Soooooooooo three weeks later we redo a scan... If it is cancer , wonder how fast it can grow without any DAMN treatment????
Well... only went from a pinkie nail size to a half dollar coin size!!! That crap is growing like crazy... Lets do a spinal tap ...Geeez that is packed with cancer cells... Your options? take him home and enjoy the 2 to 3 months he has left... SAY WHAT???? You are telling me to take him home and watch him die , that this is it???? other option? try some oral chemo, see what happens, prognosis? under 10 % maybe 5% ... How the hell did we go from 80% to under 5% ???
And remember, make as many memories as you can, go on your make a wish trip , NOW!...
My head is spinning ...My guts along with my heart are being ripped out ... What just happened? Headaches, scans, surgeries, rads, chemo, feeding tubes, more scans , RELAPSE , your son is dying .... COME ON...Someone ,please , wake me up , this is a freaking nightmare, a very bad joke, ENOUGH!!!!!! Noone woke me up, no one told me " just kidding" ... It is true , reality , OUR reality ... My "not long ago " healthy 3 year old , is now my " soon to be dead" 4 year old...
OK , think... what do i need to do ? How should i react ? One of my sons favorite thing to tell me is " Mama, smile... " Soooooooo, as long as he can look at me and smile , so will I ... Broken heart , but still smiling, just for you my lil man ... Off we go to Disney World... Again, the nightmare goes on, Er , seizures, " Does your son have a DNR order ?" "A DNR ??? NO !!!! FIX HIM!!!!" Son is getting stabbed , put on C-PAP machine, and all with no reaction , eyes opened with a blank stare... Anti seizure meds kick in ... Trip goes from bad to awesome... " See , Mama, wishes DO come true..." Oh baby, if you only knew...
Back home , it is all downhill from there , headaches, hospice set up , functions and abilities all taken one at a time , my "not too long ago" healthy 3 year old is now my " paralyzed, cancer eaten body" 4 year old... No denying it now ... He IS dying... He doesnt let us know if he comprehends whats happening... A question comes to me over and over and over again , and still to this day " HOW AM I GOING TO LIVE FOR THE REST OF MY LIFE WITH A BROKEN HEART???" I am still smiling for him... My son is fading away , slowly going into a coma... only times he talks or moves is to say and shake his head NO ... He looks mad or scared or both... He doesnt want to go ... It is killing me to see him scared ... Finally after 2 weeks in a total coma, he is showing signs of struggle ... his breathing is different , his heart rate too, he is only taking 8 to 12 breaths a minute( try to count your breaths and only take even 12 breaths!!) . On saturday morning , he has another episode of "fish out of water" breathing, but this time he cant beat it... With my hand on his bare chest, i tell him its ok, he can stop fighting now... His heart is slowing down, i feel his last heartbeats under my fingers... "He is gone" are the exact words I sent to Debra at 11.22 am ... 11.22 am january 19th 2008 , my four year old died following the fatal attacks of cancer ...
In 2004 , i was holding my healthy 18 months old son, crying after the death of baby Allie killed by leukemia. I was crying for her mother, i was crying for Allie, and crying because I was blessed with my three healthy sons... NEVER EVER did I think that one day I would be in Jennifer's shoes... Never ever did I think that day that one day my healthy 18 months old would turn 4 while battling cancer ... Never ever did I think that my healthy 18 months old would never live to be 5.... It only happens to others...Well , guess again , IT HAPPENS TO US ... It CAN happen to your children... If you think this is not your battle because your children are healthy TODAY , think again, tomorrow IS another day , but not always another GOOD day !!! Childhood cancer is everyone's battle , not just cancer kids and their families' .... IT IS YOUR BATTLE TOO , just so if your kids, your nephew, niece, grandkids , ever have cancer, a cure will be available for them , just so numbers wont matter because cancer will be 100 % curable...
We were given 80% at a five year mark for cure , Julian didnt even make it half way thru treatment... It is unacceptable.... This has to be stopped....
WOW!!! This was a workout , now, I think I should go on to bed and try to think of a happy place so i can get a few hours of sleep... Any suggestions???
Oh and please , don't need to remind me that I do have other children and that should be enough , because i already know that ... It still doesnt take away the fact and cruel pain that one of them is gone...
Mimi
