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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  1. I have been following your blog for some time now, and I have to say that you have the most beautiful family! All of your kids are so beautiful and I look forward to each and every post that you write! I frequently pray for Reesey and for you and EJ and for all of your awesome kiddos :) I usually don't write or comment but just felt the need to say that I, someone you've never met, enjoy getting to see your kids grow and discover life through your lovely blog.

  2. Good read, my friend. Thank you for that.

  3. What is the saying, worrying doesn't take away tomorrow's trouble, it takes away today's peace? You and your family seem to make the most of every today, it's such a joy to see your pictures of the girls and the fun you all have together.

    And please pick the pillars background. ;)

  4. I too, have never met you and have followed for a while. But, I do feel like I know you. If we met at the grocery store, I think I could carry on a great, long conversation with you. I pray for your family and I am inspired by your courage, joy and peace (when those moments come). AND, I can't believe how many kids you have! My three girls are a hunk of a lotta love! Your house is so full of it!

  5. I want you to know how much this blog means to me - I NEEDED to hear it! I have anxiety off and on when my mom's tumor markers go up and then go down a little bit. I feel a let down when she has a bad day after her chemo and know that she doesn't feel well and I can't always be there. I try so hard to not think about tomorrow and I really like when you said you let yourself be sad and then that was that. I agree that we need to live in the moment and enjoy what we have b/c we're not guaranteed tomorrow. Thank you for that reminder! BTW, I saw you at Winco probably a month ago!!! :) Maybe our paths will cross again this weekend if you're at Relay for Life again. Continued prayers for all of you; especially Reese!!! She's such an inspiration!!!