Wednesday, April 16, 2014

then little steps.

i imagine if you read my blog all the way through, from dx to now, you'd feel like you were on a roller coaster. its cliche to say so, but i do feel what way often. and i hate roller coasters.

we had our 3 month MRI yesterday. it was a long day. i woke up at 5am to get ready. reese, corbin, and i headed downtown by 6am and then EJ took the girls to school. he got there about 830/9? i dont remember. she was out by about 10 or so and then we went to help her wake up. we went upstairs for our "after" appointment. we waited… and waited. first glance said tumor looked stable. alright then. i agreed that it'd be okay if they just called me with the official reading later.

i kept my phone on me. literally. i knew if i walked away, i'd miss a call. i called at 230 or so to say "hey. still waiting!" and someone called me back later to say "they are looking at it now". our onc called us at about 830pm.

basically he said that there were 2 things to mention. one was that her tumor looked stable, which he was happy with. ok neat. i need to remind people, i think, that her tumor doesnt necessarily have to go away. it can just die. ish. so if for the rest of her life we heard "stable", then that would be totally okay. the second thing was that there was some spot, far away from her tumor, that they wanted to look at again in 2 months.

of course my heart sank. damnit.

he said that he and the radiologist looked at it for a long time. they couldnt decide what it was or wasn't. they asked our neurosurgeon to look at it. she didnt feel as if it was something we needed to look at right now. and keep in mind, they have all rushed when they have felt the need to rush. i trust their "wait and see" a lot. he can't tell me its not tumor - because how does he know that for fact. he can't say it is because that would be strange - the location, the chemo progress, the main tumor shrinkage from the beginning (which is impressive for size reduction). he can't tell me it will or won't just go away. remember in december there was weird things on an MRI (not the same as this), but it just went away by the next MRI. i think it was last summer, they accidentally did a spine MRI when they were doing her brain - and a doctor mentioned a spot that they'd look at later - that went away, too. none of this is the same, of course, but just to say who knows.

i find it very hard to believe that my talking, walking, joking, thriving almost 4 year old is some how, not…

anything is possible. so for that we just pray. he can't tell me we won't need more chemo. there are more plans and protocols if need be. i just don't really want to need them. i joke about staying on chemo forever, since the feeling of losing that safety net can take my breath away. then i am faced with a half second of thinking about more chemo and i immediately regret any alternate comment.

worrying does me no good. not one smidgen of help. so last night i let myself be sad. and then that was that. i took my sweet girl who desperately missed school to her favorite teachers and friends, today. when she got into the car at pick up, she told me they went outside and played on the swings (which by the way, she never used to do. she hated the swings. i figured it was bc of the tumor). then she told me they had an egg hunt ::sigh:: what a fabulous morning.

2 days ago, i had some sort of… daydream. i had set myself up for something amazing, which i rarely do. i thought to myself "what if he said it was just gone? what if her tumor just disappeared?" and i think thats what was so hard - i had been living in some sort of "whoa, look how awesome she's doing" bubble - that the pop, was difficult.

but tomorrow, she goes to school again. and then again on friday. like a normal kid. next tuesday we will have our "last chemo". i will celebrate. we all will celebrate. we'll have another MRI in mid-june, assuming all goes well in may, and then figure it all out then. or not… maybe there won't be anything to figure out.

for now im going to go pick out which photos i want to order of reese's first school photos. i am going to relish in the giggles i hear upstairs as aidan is sleeping in reese's room again tonight. and i am going to try to remember that i cannot change things by being worried or sad. we can only enjoy every moment with each of our kids. which we'd be doing no matter what the MRI said. no one is guaranteed tomorrow.

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Monday, April 14, 2014

big steps.

literally.

i dont know we got the small metal walker out, but we did. i put some glitter pink washi on the bar and called it her "sparkle walker".

the next day, i brought it, on a whim, to target with us. its easily tossed into the front seat. she wanted it to come. that, alone, was huge. but then she said she wanted to walk into target.

and she did.

i had heard "i hate my pink walker" for so long. a very expensive piece of metal, taking up space in the dining room..

now, let me explain how this went. i got corbin into the basket of a cart and pushed that along as we ever slowly walked across the uneven ground. she yelled at cars that were coming. yet everyone patiently waited for her to pass, waving and giving a sweet smile as they drove by.

we got to the other side, she teetered back a bit, and i rescued her and tossed everything into the cart. i was beaming. just so proud of her.

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i kept at it. she uses it around the house, sometimes. she walked into PT with it. its just wonderful. tonight she walked about 4 steps from standing in the middle of her room, to me. and she has also started using the pink walker again because of her new found confidence.

things, in general, are wonderful. there is reese in a good mood and then there's reese how she's been recently - which is awesome. not being sick, helps ;) but we truly spend all day laughing and making jokes and cuddling. we are kitty cats, we write hearts on our hands. we have fun. she is starting to act more "hi, im 4 years old." and less OMG OUTRAGE three'nager.

we have her last MRI while on chemo, tomorrow. and yes, then we have a meeting after that - so no waiting. i am not nervous. at least, right now. i dont know why, but i feel very at peace, mainly feeling as if she is going to rock it. tomorrow, i will feel less certain. but i'll be up at 5am, drink my coffee, feed corbin, pack them both up, and head down as confident as i can be. EJ is going to take A and S to school, then meet us. M is already at my parents' house since they didnt really want a 6am drop off ;)

at labs last week, i tried to get some pics of reese doing what she does. with the people she loves. miller came with us and was, surprisingly, great. reese walked the hall, gave cuddles and thumbs up, and gave some blood. all in a days work, i suppose. how so strange it will be for these to become less frequent. being ripped from a routine is miserable. i felt that way about "drop offs, gym, pick ups, dance" that i had before reese was dx. how strange that i feel even worse about going back to that this summer.

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i feel the need to rush and make memories. different kinds of memories than i am used to. i just want to make sure i document how things go right now, at the hospital. people she sees, things she regularly does. i don't know, but its overwhelming. i want photos with doctors and nurses. we will be seeing them, all of the time, still. but eventually in a different type of setting, i suppose... or hope... or whatever. i am trying to plan next week's "end of chemo" in-patient. and that is tipping my scale.

reese had a hearing test today. meh. she has dropped off on her high frequency hearing. which is to be expected. and we're almost done, so...

i think she expected me to make a sad face or something, but i just said "oh ok. thank you!" and went on my way. all things considered, high frequency loss is pretty low on my freakout totem pole. she could be going deaf and we'd say "i guess we should all learn sign language" - because in the end, it just matters that she is here with us. and happy. so this was okay.

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aidan woke up from a sleepover on saturday and her eye hurt. long story short, EJ was at the legacy children's ER that night - pink eye and a corneal abrasion. :( sweet girl. she was simply excited about "a bracelet like reese!" i kept her home today, from school, but at least she's not contagious anymore (we got the 8 hr meds). let me say, eye drops for 5 days, though, is no fun for a 7 year old.... or the eye drop giver. ::twitch::

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we spent yesterday evening at the splash pad. after hearing that this week was going to be so cold, we had to get out and get some sun. they had so much fun just running around and eating dinner picnic style.

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summer is coming. freedom is coming. i am hesitant and nervous... and excited. the countdown to reese's last chemo is about a week. i have to get my thoughts together. and pray that this it.

another new normal. after already getting used to this one.

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Saturday, April 5, 2014

learning as i go.

every single time i am at the hospital, i learn something new. we have lived in ICU. we have lived on the oncology floor. we have had uneventful chemo stays. we've also had anything from a 99 fever to septic shock, with some sort of brain infection in between. i have cried to nurses, to oncologists, and to doctors i don't even know. things change all the time while we are living within a structured protocol. so while i am not an expert, while we are not done, i have a few things i would want to say to the me of halloween 2012. and to those whose date is more recent.

1. it's okay. it won't seem as scary, soon.
2. you will start to understand medical terminology very quickly. pay attention and listen close.
3. ask questions. to anyone. about anything you don't understand.
4. ask "what are you doing now?" if you want to stay up on the meds and things your child is getting. you are not annoying. you are learning.
5. start a journal or blog. get a planner. carry it around and write everything down. you are going to want to remember dates and times later.
6. get a rubbermaid bin or something similar for home for their "things". paperwork you want to keep, cards from friends, deflated balloons, clothes they wore on a certain day... its a shitty memory box to have to keep, but you will be glad you have it.
7. google is your friend and enemy. remember that statistics aren't meant for moms perusing the internet. your child is not a statistic. and someone has to beat all odds, right? but i think its important to learn about clinical trials, things other hospitals are doing, etc. even if all you do is bookmark that information. knowledge is always power.
8. let people help you. you have to let go just a bit, no matter how hard it is. let people bring you dinner or help you with your other kids. if you are a friend reading this, don't ask "how can i help?" - just do what you think your friend would like. wanna cook? just drop it off to them. its hard for people who only relied on themselves to now need to rely on others and to ask.
9. remember that whatever people say, they are saying it because they love you - even if its not "the right" thing to say. no one means to hurt your feelings. sometimes people just don't know what to say, but they are trying... give them some grace. people are also going to give you every piece of advice they have ever heard on the topic. some of it is helpful and awesome. some of it may not be your style. some of it may be things you've heard a million times. just know that people feel compelled to help you in some way - and this is their way. say thank you.
10. be nice at the hospital. make friends with nurses. they will be your best friends and can be extremely helpful when you are confused, are having problems with residents, or just need someone to understand.
11. do not ever hesitate to speak up. if you are uncomfortable with something - say it. someone can explain to you the why. if they can't, then maybe it's a good thing you spoke up.
12. you won't always cry. you will cry sometimes. thats par for the course. but talking about it won't make you cry as much or as often. life will be filled with more facts and less uncertainty. that will help. even if the facts aren't always happy ones.
13. chemotherapy is extremely uneventful. i expected some grandiose thing. it is not. it just... is. i remember taking photos of the first chemo - nothing more than an another IV drip. that sometimes ends the night in puke. get some zofran. and possible ativan. you'll figure it out.
14. also, the word "chemotherapy" sounds scary. and it can be, but remember its job. i webMD'd types of chemo once. some come from plants. some are manufactured by people with hazmat suits in a lab, but each has a job. and if your child needs it - remember to classify it in your brain as a "helper". so are steroids. even if they make your child hulk-smash things. it has a job.
15. you will mourn your child's hair loss. then again, at the end, you will mourn their bald head. i said a few posts back, try not to look at their head as a sign that they are sick, but as a sign that they are getting better. its a battle wound, only. their hair will come back. but for some people (like us), you've had a smooth noggin for so long - that its all you remember.
16. in the beginning, don't forget to shower. and sleep. and go home, sometimes. you need those things for sanity. it is not selfish. you need to be on top of your game when you are with your child and doing "normal" things, helps that process.
17. your new normal will stop being called "new" and start being called "normal".  just give it time. it will come faster than you thought it would.
18. being on chemo doesn't mean you are locked in your  home, for most. there are high/regular count days and low count days. you will have labs to know for sure.
19. it is okay to laugh. make jokes with nurses and doctors. talk about other things with them. let them get to know you and your family. it is okay to feel happy.
20. you can't live in worry all of the time. you are only guaranteed this exact moment. the last thing you want to feel is that you wasted months of your life worrying about things that you cannot change.
21. plan things. plan fun things for tomorrow, for months from now, for the future. the latter is hard. very hard.  let some time pass before you do that, if you need to.
22. give yourself some grace. its okay if you didn't do the dishes because you were running around to appointments all day. it is okay if your husband had no clean underwear because you had to run the washer again after forgetting to swap it. ask a friend to help, hire a maid to come every once in a while. its okay if you can't do it all.
23. remember that your husband or other family members may deal with all of this differently than you. don't judge anyone else for how they survive the new normal. and friends, remember that about us, also.
24. don't overpack at the hospital - you are going to somehow leave with more stuff than when you came and its a pain in the ass to take to the car.
25. have a backpack with necessities ready in case of middle of the night fevers. its annoying to be searching for favorite PJs at 3am when you need to leave.
26. your child will adapt. its heartbreaking to watch your child go through such horrible things at any age, but children will adapt to whats going on and rock it out. they are much stronger than we are. super heroes, indeed.
27. ports are awesome. really. tap in, give meds, tap out. no IVs 98% of the time and with the numbing cream - they really don't feel it. you can even give some meds at home with that thing. its useful.
28. this may be only my opinion, but let your other kids in on some of the medical things. sometimes its less scary when they can just talk to you about "the tumor in her head" or "her port being accessed" or "how the medicine gets in" as opposed to "your sister is sick". i would never want them to think that being sick means any of this.
29. people will want to hug you. lucky for me, i'm a hugger. if you are not, you had better get over it because people, sometimes even strangers, will want to hug you. it is one of my favorite parts :)
30. hospital food is not that bad. and some of it is really good. you just have to figure that part out ;) also, find out how to get food cards (cheaper than eating in the cafeteria), if they have them. food is a very expensive part of it all. its easier to eat out because you are so busy. and the hospital food is NOT cheap.
31. find out who your social worker is. they may come to visit you, maybe not. but they can be a huge asset to navigating almost any part of your medical journey. they are who you need when you need signatures for things, for finding out answers about insurance, for getting information on events - most anything. she will do the chasing down of information and it is a life saver.
32. child life can make any day better. you need an extra blanket? they have an adorable one. your kid is bored? i bet they have 20394823 fun things to do. they also know about all of the upcoming events. they are ready to help - so don't forget they are there!
33. be ready for questions. sometimes from people who are just curious, sometimes from people who have felt a need to talk to you, sometimes from children who want to know the deal with the bald headed kid. it will eventually be nice to answer these questions. almost cathartic.
34. people want to pray for you. even if you, personally, aren't religious. people want to give you "good vibes", even if you are wishing they'd simply pray. accept all types of love and support with a warm and open heart.
35. try not to correct everyone's [lack of] medical knowledge. sometimes, i am bad about this, but i try to reel it in.
36. you won't sleep a lot leading up to MRIs or PET scans or whatever you do to check up on your child. when i first hear the word scanxiety, i laughed, knowing how spot on that was.
37. you may invent up every single thing being off or wrong or bad in the days leading up to the scan. its just the way it goes.
38. because sometimes you are neurotic. and that is okay. join the club.
39. you know your child best - and the doctors will agree with that. so never ever hesitate to mention something. i have pushed. i have mentioned ridiculous things. i have cried in the clinic rooms about random things. but i have also witnessed small changes that were indicators of BIG illness later - and only i, as the person with my child the most, could relay that information.
40. you will mess up. your child's counts will drop early and you will have sent them to school that day. you'll forget an appointment because you didn't write it down. whatever it is, refer to #22.
41. when you finally figure something out, it may change. go with it.
42. learn to live life in the flow. those plans you had this wkend? out because of fever. that sleep you wanted tonight? gone because of a puking kid.
43. but they are here. and thats better than those plans. or that sleep. every middle of the night chat session puts the sleep i thought i needed to a test. and i wouldnt give up one.
44. celebrate small victories. anything. a stable MRI, end of chemo. just going home after a long hospital stay. you'll find your own.
45. find an outlet to vent. maybe you blog like me, maybe you find a therapist. finding online groups for your child's dx can be helpful as well. just whatever helps you feel as if some of the weight of it all is lifted, even for a moment.
46. some of the people you thought would never leave you - do. some people will not be able to handle your life. also, some people will be there, so strongly, up front and then wither out of your life when things get more stable. but there will be those who you never thought would be your best friends, stand up and end up closer to you than anyone else. cherish them. their support will keep you afloat some days.
47. remember that everyone's journey is different. some end in celebration. some in heartbreak. some have mountains along the way, some have valleys. do not compare yourself to their cancer. their tumor. their diagnosis. that is not your child. this is important to remember when you read other blogs or follow facebook pages - it can be overwhelming. do not feel guilty for needing to take a step back, either. but we all meet in the middle. somewhere between fear and love sits all parents fighting a battle for health with their kids.
48. but you will get through it. and then at the end of treatment you'll be just as scared as you were day one. but this time, it is new fear.
49. the fear, will likely, never go away. i am not that far past those who i am trying to help and write this for, but i know for certain that i will never stop worrying. or randomly crying. or texting friends who "get it" to talk to me off the crazy town train. but what i do know is that i am still okay. we are all still okay. and that before our journey began, i thought i would never be able to be that strong. to be that mom. for us to be that family. but we are. 
50. and you are. and you can do it. because you have to. and that is reason enough.

if you have more things you'd want newly dx parents to know - please add it in the comments.

follow reese's fb. and instagram (punkfictionv4). or email me, anytime - amandaskelte@gmail.com


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