Monday, September 29, 2014

Big Update....

She has a couple more appts this week and has her 4th round of chemo on Saturday. It will be an 8 hr day, but not an overnight stay. smile emoticon She begins proton radiation therapy at UF/Shands (here in Jax) next Monday, 10/6. She will have radiation M-F, 5 days a week. She will have a couple of weeks of no chemo, then another round on a Sat. (no date yet). I don't have times for her radiation, as it may change from day to day. I will get the appt time for the 6th on the Friday before, and we don't get the next day's time until before we leave the previous day's appt. So....I find out what time to come on Tuesday before we leave our appt on Monday, and so on. And our appt times can change at a moment's notice. If they are running ahead of schedule, they will call and tell us to come early. If they're running late, they'll call and tell us to come at a diff time. We're basically on call for radiation. wink emoticon She will have 35 days of radiation, which = 7 weeks.

We were hit with a completely gut-wrenching, heart breaking list of side effects from the radiation therapy on Thursday.....some probable, some possible....that left us both literally numb & sick. I can't even express how you feel as a mother, trying to process the horrible things that could happen because of a treatment you're consenting to for your 16 yr old daughter....trying to process them yourself while at the same time worrying about how SHE'S processing it. (The Ashlyn that you see at church is not usually the Ashlyn we see at home....there's a huge emotional roller coaster we're riding, white knuckles and all!!) It'll wipe you out. For days. Only you don't have time to be wiped've got things to do, places to go, appts to keep, phone calls to make, 3 people to take care of & their schedules to keep up with & counseling & therapy to offer at a moment's notice, throw a class or two in there to take here & there, a future to plan for 4, meals to provide, etc. etc., etc.....oh...and try to fit actually working a little bit in there somewhere....

Y'all have been so amazing and faithful in your, as I have in the past, I'm going to post the good, bad & ugly so that she can be prayed for very specifically. I know it's your prayers getting us through....THANK YOU & keep up the good work!! smile emoticon She should have suffered much more than she has so far....her oncologist just "can't believe" how healthy she is & looks, that she still has her hair (she's actually lost at least 1/2 of what she started with but only we notice it), and how well she's reacted to the chemo. He said he had to admit to us now that before he began when he saw her tumor, he wasn't sure that it would respond....and just "can't believe" how well it has! She also had a mass on her original MRI that is completely gone now. There are some lymph nodes in her groin, underarms and chest area that are still lighting up. We were told that it could be nothing.....or could be precancerous and will be monitored. Mama don't like. 

**Possible** acute side effects:: extreme fatigue, irritation/inflammation of skin, peeling, blistering, mouth/throat irritation, hair loss ~ both temporary and permanent, dryness in mouth, nausea/vomiting, inner ear fluid buildup, hearing loss ~ both temporary & permanent, mucositis, mouth sores.

**Possible** long term side effects that could show up months or years down the road:: neck swelling, neck stiffness, swallowing disfunction, ear fluid & partial or complete hearing loss in one or both ears, optic nerve damage, loss of vision in one or both eyes, pituitary gland problems, salivary gland problems, thyroid glad problems, brain/brains stem damage that could affect strength, sensation, bladder control, etc....paralysis....nucrosis of the brain which would affect memory, concentration, IQ....lockjaw....AND the radiation itself could give her more tumors and that would happen 7-8 yrs. down the road....

People thank me for being transparent.....I'm transparent because while I've always been a pretty "real" and down-to-earth person by nature.... if you go through enough stuff, you reach a point where you can be nothing BUT transparent. Because you DESPERATELY need each and every prayer that anyone is willing to offer up for you and those you love so much you'd give them your last breath if it would give them one more. If I share the ugly...even the side effects that are not probable but are still possible & how hearing the possibilities hit like a mack truck....and you are willing to pray...maybe she'll be spared. And maybe if I share all the stuff that families go through when they walk a road like this but don't usually share, it'll give you a little more compassion and mercy for the next one God places in your life. They're going to need it but they might not be as wordy as I am wink emoticon and maybe you wouldn't know....but now you will.

Something I have only shared with a few:: I have had a couple of other families with children with Ashlyn's diagnosis who have given me info...and have researched a bit myself....that indicates this type of cancer doesn't play around or go away easily. That the tumors respond to the treatment.....but that the cancer lies dormant...and then comes back. Sometimes in a few months, sometimes in a year or the lymph nodes that could be nothing but are lighting up will always be there, in the back of my mind. Even though I know that this is HER story and it doesn't have to be like theirs. Even though I know that HE has her days....however many they will be.... laid out before her and that it's all in HIS control. Even WHEN she's healed of this tumor'll always be there. That knowledge, in the back of my mind. And I think I'll always be waiting.....for that all clear when we go for check ups and scans. Always. It's not a lack of faith thing. It's a Mom thing. And maybe a Life thing.....the things that my Life has taught every day to its fullest, to the best of your ability, smile and laugh at every opportunity....and if the opportunities don't find you then you make your own, be THANKFUL in everything, in every moment.....and don't waste any of them. But also be ready to be knocked down at any time, without warning. Always be ready for the fight.


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