Scanxiety for nothing

Well we woke up bright and early for Mal's ultrasound (liver and tumor sites) then we walked into the room where they do the MIBG radioactive isotope injection to find out because Mal has a slight cold that they were not going to inject her today but wait till she is feeling better.

I am having a big pity party, when it comes to scans I just want to get them DONE and OVER, I get stressed about them from the moment they are scheduled and now we have to wait even longer.

I've been working with a therapist for 2 months now, and we're just now breaking grounds with some of my anxiety and depression. I had a session yesterday that really helped clear my mind and instead of preparing for the "what if's" life has in store for our family I need to focus on the present and what we have right now. And today I'm just going to state it how it is "THIS FUCKING SUCKS". Excuse my language but that's how I feel.

I know we just have to wait another week or so but seriously I had prepared myself, I had the plan all set, and then life once again throws us a curve ball. I had talked to Mal's clinic nurse yesterday and she said we'd be all set if she wasn't coughing, well aparently that just wasn't the case. Let me state again "IT FUCKING SUCKS".

So instead of getting a "package" explanation of what her scans look like we get bits and pieces and last time the ultrasound showed "small spots", they did not light up on the MIBG but they are still a cause for concern, they could be dead tumor tissue they could be volcanos waiting to errupt.

So who knows, cancer, wedding planning, scans, who knows what the hell else life has in store for us. But I will state it one more time because I really just feel this way today "IT FUCKING SUCKS".

Who Would have thought?

This little girl is hanging pool side, 6 months ago we would have never dreamed she would be doing this and here she is. This is Miss Mallory, our rock star of a kid, she's got the whole world wrapped around her tiny little fingers!

Ohhh la la Vintage Little Misses

Our girls do really love each other until you make them sit together, then it's all done for! (Hence the super over dramatic "Sissy Has Cooties" faces).

Mal had clinic today, that girl has had amazing strides in the past 2 months. She started sitting, 2 weeks later crawling, 2 weeks later standing up, and now we have a CRUISER! Soon we'll have a WALKER! I would totally confess that I am not ready, but heck BRING ON THE WALKING! We've got this.

She has scans next week Tuesday & Wednesday. Ultrasound, Urine Check, & MIBG Injection (which the poor pook has to have an IV for) and then on Wednesday the big MIBG/CT scan (which she'll have to have ANOTHER iv in for). It's weird that I'm actually not nervous at all for the sedation process, it's the whole IV part of it, she doesn't sit still, half them times she's had to have them she's been poked more than once, usually around 3 times. So please pray that this goes smoothly for her. Not only waiting on the results but all the poking they have to do. I don't mind blood draws as much as an IV, especially an IV in a baby.

24 days till the wedding, am I nervous, not yet, am I totally ready, almost. It's been a crazy ride this past 7 years but I am super excited for our wedding!

Scan Time

Next order of business (besides the crazy crazy wedding planning) is Mal's scans.

August 7th is her ultrasound & MIBG injection then on the 8th is the big MIBG/CT scan.
This is her 1st scans since being deemed in remission, we are holding out a lot of hope considering her chatacolomine numbers have gone back to normal (after her little bump).

I'm a little nervous since she is a wee bit bigger and we still have to do the "no food or drink after 4:30 am" and she has to have an IV instead of being sedated through her broviac. She's a tough kiddo so I know she'll do fine and I pretty much don't get any bit stressed out with sedation anymore or blood draws. It's just a normal part of life for her and something that we have to do regardless of how much it sucks.

Just praying that she has clear scans again so we can just continue moving forward.

I am super excited in less than a month I will marry my best friend! and in less than 2 months our tiniest tiniest fighter will be 1. Seriously it's been a crazy hectic ride this year, so glad we've taken the reins and are ending it with some pretty big bangs!

Our Sweet Sweet Babe is 10 months old tomorrow.

May the angels protect you, trouble neglect you
And heaven accept you when it's time to go home
May you always have plenty, the glass never empty
And know in your belly, you're never alone

May your tears come from laughing, you find friends worth having
As every year passes, they mean more than gold
May you win and stay humble, smile more than grumble
And know when you stumble, you're never alone

Never alone, never alone
I'll be in every beat of your heart when you face the unknown
Wherever you fly this isn't goodbye
My love will follow you, stay with you, baby, you're never alone

Never Alone - Lady Antebellum w/ Jim Brickman

I am excited to announce that Ry & I are getting married on August 25th.

We are keeping it quaint, simple, small and beautiful. This is something we've wanted to do for a long time and with all of the mountains we've climbed this year it seems fitting to end it with a brand new start, the first day of the rest of our lives. We don't know what the future holds for our family but I guarantee it's got an abundance of blessings in store for us. To have our 2 little girls there to celebrate this huge milestone means the world to us. We love Jillian & Mallory with all our hearts.

And 1 month after our wedding our sweet sweet peanut will be 1! I can't believe I'm already talking about getting stuff ready for her party. When she was 2 months old we were told she had "cancer", and now we're planning some wonderful birthday shenanigans, a birthday we weren't so sure she'd have. But Here we are, planning a birthday party for our sweet sweet babe. It's going to be an open invite birthday, we would like to share this amazing day with all the people that helped us this past year. That cried with us, hugged us, sent us cards, and prayed for our family. Without you guys, I don't think we would have made it over the mountain.

She's our little SUNSHINE and we want to share her with the world! She still has at least 3 years of scans, blood draws, and urine checks before she's deemed cured but we're taking it day by day. We want the world to know who Mallory is, what she fought, and that there are so many children just like her. That are fighting for there lives, who inspire us everyday. We continue to pray that with the Lord's help we find a cure for these beautiful souls. We are very very blessed to have Mallory, to have reached this point, and we couldn't have done it without the Lord watching over us, without all of your prayers, without all of your support. So please feel free to message me on here or add me to facebook if you would like to celebrate this beautiful life with us.

We will be doing a balloon launch on this day as well, so if you cannot join us but want to celebrate please let a balloon fly high on the 23rd for the kids that are fighting or who have gained there angel wings.

She's come a long way from this day.

we make mud, we make memories

 

 

These are a bunch of my crazy Nieces and Nephews from Ry's side. I LOVE them all so dearly. The love in this family is incredible, I am so proud to say that even though I've known them for 7 years that on August 25th I will be "OFFICIAL" part of the fam! These kids have so so much love, and seeing that there lives even were effected by Mal's situation breaks my heart but it makes me so grateful that they really are just full of so much love and each time I get to see them there is never a lack of that for sure.

 So Jake, Sydy, Kel, Ben & Will you are my Rock stars! Thanks for being so Amazing!!!

Celebrate

Mal's numbers were 21.1 and 13.1!
BIG RELIEF!

This means her numbers were greatly effected by her diet last time, I don't know how we're going to continue her strictly formula diet the older she gets but we'll figure it out.

(Mal totally borrowed her Sister's old glasses for a photoshoot!)

We are going to enjoy a stress free day!

This little light of mine

Isn't she just so perfect, so kissable, so sweet?

I am proud to be her mom!

We are anxiously awaiting this week, we do another catacholomine test to see where her levels are at. This past test we received meehhhh not the numbers we had hoped for.

So tomorrow starts Day #1 of only formula for our little chick-a-dee so we can see if maybe her diet did in fact effect her numbers. I tried diligently to watch everything she ate according to the sheet they gave us (which includes peanut butter, vanilla, beans, chocolate, caffeine, and all citrus fruits and juices). I am not so sure what we're going to do when she's off formula, maybe we'll be crazy people and put her on toddler formula once she's 1 so we can continue to monitor the numbers correctly. We have to do this test once a month for however long and I'm not so sure how we're going to keep her off of real people food. She's got plenty of little chompers now (5!) so she just wants to EAT. But maybe after this test we'll have a better understanding of where to go and what to do.

We also have scans late next week or the week after, the dreadful scan time. We'll see how that'll go considering she no longer has a broviac and she'll have to have an IV in place for that.

She's amazing, she's doing great, and we couldn't be more proud of our little sunshine.

Happy 4th.