It is what I have. Sometimes it is all that we can have. When things seem their bleakest, when it seems the light at the end of the tunnel has surely burnt out ages ago, what else can we do but hope? Hope someone finds a new damn bulb right?
I am hoping for a bulb. I am praying for a bulb. I am BEGGING for a bulb.
What on earth am I yammering on about? Emma of course. I don't know if it is because I am so far away that I feel so consumed by it sometimes. I don't really know. I surely can't imagine being in their shoes, day in and day out. Appointment after appointment, therapy after therapy. One kid to dr's and therapists and treatments, one to school and dance class and another on the hip always. Life? How is there time for anything beyond that? Every momentary flicker of light that you glimpse. Every caught breath, every raised eyebrow that is about to deliver news be it good, bad or inconclusive. How can one live with this? Have you ever been sitting in a waiting room while a loved one is in surgery or something and you hold your breath each time a lab coat or pair of scrubs comes nearby? Imagine that nearly DAILY. I cannot. Unfortunately, there are many people that know it all too well. That exist around this very thing. Over and over and over.
I only get updates via Facebook, sometimes the blog and once in awhile I get Jayne on email or chat. Each time I get an update, I feel queasy. Sometimes, I am seriously physically ill. My heart seems to freeze mid-beat, my stomach does a roll and then a good hard twist..."no, it's supposed to go the OTHER way. It's supposed to stop now. It's supposed to be 'that thing that she had when she was little', not getting worse! Why???." Isn't that the age old question? Why does she get to have those months where she's playing soccer and dancing and laughing with her sister and cuddling her baby brother and we all collectively seem to breathe a sigh of relief, there is but a tiny pinch in the back of our minds. However, we have so much HOPE that sometimes it even seems safe to think that maybe, just maybe...
Then. Then there's the way it is going.
I will admit that after her first surgery, I was skeptical but certainly hopeful and even relaxed too much at the idea that it was truly just a 'thing' and they were so lucky and blessed and that was it. You can never fully expect it to just go away though, but you can kind of almost hope it's totally true. After her second surgery though, my gosh how could we doubt it? Complete strangers got tears in their eyes when I told the story. When I told of how difficult it was for her coming back out of the first surgery and how the second one she nearly jumped off the operating table singing and dancing when they were done. She's a miracle. She is a miracle, there is no doubt of that.
After this last bit of surgery, we'll go ahead and call it two more because hey she was operated on twice so let's give her the credit she deserves here. After this last one, you can see...I have seen something in photos that is just not quite right. She's not been well at all since she left this time. She's been back in the hospital and back for loads more testing. They don't know what is causing her odd symptoms and frankly, she is exhausted and just not herself. I don't even have to get that from anyone, you can see it in a photo from five thousand miles away.
Well, to update you all, there's more. They've now found a new tumor in a new place. General vicinity of the others, but all together a new tumor. Now...oh really it's still so hard to process, but now they say that it is also in her spinal fluid. This is untreatable. They will not do more surgery. It is chemo-resistant and they cannot radiate her anymore. This is just in her head, not even including what they are seeing in her spine.
I saw the words, "the prognosis is not good".
Making this assumption as it were, to see them, straight from the source, typed out for all eternity. What the hell can I say? The only thing I can say is pray more, pray harder, hope like hell, hope like there is no tomorrow that something, ANYTHING comes up and cures her. Something. Now the dr's are set that what they saw on the scan was cancer in her spine and wanted to cancel her spinal tap today, but someone else said that it could be an infection (which WOULD make sense with the symptoms she's had since leaving the hospital). The dr's disagree but thankfully my darling friends insisted she have it anyway. So at the moment the greatest hope is that the Dr's are wrong and said person is correct. That would be something to dance around in the street over. We can be pissed later that it was not caught sooner, whatever, but if that is the case, then dear God please let it be and let it go away so we can focus on the original issue at hand.
That smile, those sparkly eyes. Those are enough to kick the shit out of this cancer. I just know it. Let alone the love and strength that are all holding this little girl up. There is so much behind her, I can feel it, I envision Emma standing there seemingly alone. David and Goliath as it were, she against this cancer and the cancer coughs out an evil laugh thinking it has won, but in the last minute, the shadows clear and it is horrified to see hundreds of people linked arm in arm, chests bowed out, so strong and unmoving that cancer sees it has no chance at all. This love and strength behind this little girl is no force to be reckoned with and this cancer wheels around squealing, tail between legs. That is that.
That is what has to happen.
My little boy. He has been so concerned about Emma all this time. I know he can hardly remember her, but he does a bit. He's definitely heard about her a lot, he's always asked about her. It's odd to me sometimes what all he really absorbs and the times and ways that he recollects things. It was odd because just YESTERDAY, we got on the subject of diseases. He's asked a few times before, and I have tried to explain what Emma has to a degree but certainly don't want to freak him out too much either. He does understand that it is very serious and he worries about her.
So as it is, a boy was out from Cody's school for chicken pox. The boys were really interested in this and telling me they had it too. (ha! nice try). So I went in to explaining that they've had vaccinations for it, but in the UK they do not have vaccinations. After a fairly lame job at explaining what vaccinations were, with a random jab at some of the silly vaccinations there are that could have been better used for other things, we got on the subject of diseases in general.
Kade, bless his heart, then says that "Emma went out for a walk, and she came upon a bush and she ate some wild blueberries but they were poisonous and that is how she got the cancer. So if she just doesn't go to the bush and eat the berries she won't have the cancer anymore. So we just have to tell her not to eat wild blueberries."
How precious is that? So I tried to explain that it was not from blueberries, that some diseases were simple and we could just get over it. Some diseases have medicines that you can take to make them go away or keep them from bothering us, but some diseases just can't be 'taken away' just yet and it's very sad."
I always find it interesting because, while we DO talk about Emma, we don't do it all the time to be honest. Not with them anyway. So this conversation coming out of the blue was touching in an odd way.
When prior to that he told me to go buy something at the store for Emma and mail it to her b/c it would take her cancer away. Just out of the blue. So as he's getting older he's grasping it a bit more, but of course not like we do. How nice it would be, to look at things from a 5 year old's perspective in the face of something so damn bad. Sorry, but there's just not good enough vocabulary in my head tonight.
So tonight I did get a moment to visit with Jayne via web-chat (sadly it's far better reception than the phone) and the boys were all up in my rear and basically took over the laptop. Jayne showed us Emma sleeping on the couch at the hospital and Kade asked if she was all better and Cody asked if they lived there. Well, it probably does seem that way.
At bedtime, Kade mentioned something about drawing (he draws at bedtime EVERY night) and then he asked if we could pray for Emma. Now, as you may or may not know, we're not really all that religious and honestly the only time (yes I ought to be ashamed) I've taught my children to get on their knees and clasp their hands was for Emma during her second surgery a year ago. So Kade asked if we could and I told him he NEVER had to ask to say a prayer, just do it! He wanted to just do it with me and him and his 2 animals.
So he says:
"Dear God, please come and take all of Emma's cancer away from her. Please let her get to run and play and hang out to do all the things that she has to do. Our Men."
So then when my face dried up and I could compose myself, he told me a story about God and a King and then Daddy and Cody came in so we all held hands and he said another prayer for Emma all on his own. This time it was to bring her to Texas (haha) and let her get all better.
I feel so useless over here. I just wish I could get clocked upside the head with the answer. Or if I have, I wish I'd see it. I'm a doer, I'm not a watcher, a waiter, a whatever. This is not my forte so not having the fix it answer or at least swooping in to DO something physically...what do we do?
I ask again, what else can we do but hope?
So I hope, I pray, I beg, I plead...please help us find the answer. Please make her better. Please...please let the world get involved. Help us find the way to make September as gold as October is pink. Please bring awareness to this disease and how little resources there are, how little funding and research actually goes into childhood cancer. The ONLY treatments are just smaller doses of adult treatments. It just does not work.
hope.
