Friday, December 2, 2011

Uplifting day

"Honestly we are coping, we are moving forward heads high and smiles on our face. This floor of the hospital is so promising, these children are amazing! So if you come visit us all we ask is for big smiles and laughs! " - I will repost this here because I totally 100% believe this.

I love my beautiful Mallory, we all do, but she needs us all to be in good spirits as well. I am so thankful for my hubstobe Ryan for being the "funny" guy, because this is a horrible nightmare and without him it would be so much worse. He has got me smiling, laughing, and totally keeping up with good vibes for our little girl. Mallory and Jillian have the worlds BEST dad.

He is an amazing man, we have been together for almost 6.5 years now. For those of you who don't know us very well we have our wedding planned for this Summer on July 7th (1 day shy of our 7 year anniversary!). We're really big procrastinators and this whole wedding planning just was looking pretty stressful and not much fun, although I am looking forward to being Mrs. Wiersma the whole idea of it really didn't sound apealing. So we totally compromised on the wedding and decided Sweet and Small was the way to go. I actually went dress shopping on Sunday with 2 of my bridesmaids and my little neice Emily and picked out the PERFECT dress for the day. I was going to call back on Wednesday and pay for it but obviously some things came up and that didn't happen. But I have it picked out at least. But back to Ryan and less about our wedding, he is my best friend, and he is my rock and he has been such an amazing part of my life. We have a beautiful house, 2 beautiful daughters, and we have a relationship that so many people envy. We have been through so much together but thats what makes us so strong as a couple. I love him with all of my heart and hope someday our daughters find a man to marry just as good as there Dad. I <3 You Fef! (I should warn everyone now I am notorious for giving everyone ridiclous nicknames!)

I forgot to mention Miss Malibu ROLLED OVER! Now she did it for the 1st time on Wednesday and we were both so EXCITED! But I totally figured out how that little stinker did it tonight, we missed it the first time, just came back to Mally on her tummy. She totally took her left arm, hooked it on the right side of the playmat (it has a little tiger with one of those links hanging off of it) and swings her left leg over her right one and bam she's on her stomach! I am totally counting it as rolling over because you've got to be pretty smart to figure out how to do it that way! So impressed by Mallory, 1 day after surgery and she's smiling  and attempting to roll over.

Another fun thing about today was Nana, Papa, Uncle Eric and Jillian came up with Christmas Decorations! Mally's room is totally decked out for the holiday's, Christmas tree and all! And I promise to post pictures here soon (Yes I have been taking lots for all of you that were curious and follow my facebook. I am still a photoaholic. I just havent had the time yet to go through and resize them all). If you've ever been to Helen Devos you know that they have the COOLEST lobby, Jillian totally went CRAZY for the interactive video wall, she was jumping, running and squealing with how much fun that was! It was great to see her again today, she is a little rockstar as well!!!

We are meeting with 2 families this weekend that have gone through this same ordeal. So hopefully they will be able to give us some insite on what to expect more. Excited to meet some wonderful people that can give us some hope.

In all today was a "Good" day for all of us! Hopefully they will give us some more updates about the genetics of the tumor in the next few days so we will have a better understand of what exactly this Cancer is and a better understand of how to treat it.

We LOVE you all!!!!

Good Friday

Today was a good day.

Today was a good day, even though we have a child with cancer. " A good day" means something different than it did last week.

Last week a "bad day" was when work didn't go so well, or if I had to go grocery shopping (I hate grocery shopping), or something else just as mundane.

Good day now means we didn't receive any terrible news. Our daughter didn't need life altering surgery, and generally things didn't torpedo into a nightmare scenario.

Rather, we actually received good news today; Mallory's bone scan test came back clean! This is an awesome thing! It means that the cancer didn't spread to the bones. So, she has still has cancer, but it isn't in her bones too.

The doctors do two different tests involving the bones. They did a radioactive dye test to see if the cancer was in the solid portion of the bones. That test is done, and that's the one that was clean. We still have to wait for the bone marrow test. This will test the internal tissue of the bone for cancer.

She still has many more tests to undergo. The marrow test is one, and the MIBG scan is another big one. If any of these scans come back irregular, we have issues. If not, we have a clear roadmap to success.

So that's what we have so far. We have clean bones. We'll be thankful for that. We're thankful for that because it's the best news we've had since Tuesday.

That is the moral of the day; be thankful for what you have. Ashley said it best on Facebook: Please, all you parents, go give your kids an extra hug tonight. Because you never know when life is going to hit you with something heavy.

Today was a good day.


More Good News!

So we received word that the Bone Scan is CANCER FREE!!!! This is just one more big thing we were super worried about, and we can check it off the list. PRAISE THE LORD!

Mallory is currently receiving a blood transfusion, her hemoglobin was pretty low this morning. But thankfully with the broviac it is making this SOOOO much easier, no more constant pokes for her. So she hasn't been too terribly fussy at all. She gets to eat finally also, she CHUGGED her first bottle. They will be giving her a diuretic to flush out some of the extra water weight from all of the fluids they've pumped her with. She weighed 11.7 lbs yesterday and she weighed 12.4 lbs today so she has gained a TON in fluid. So we're interested to see what her weight will be after all that fluid is gone and now that the tumor is out.

We are hoping to have more visitors up next week since there won't be much testing or invasive procedures until Thursday. (Ryan is possibly going back to work so I'll be here during the day by myself). I am thinking the times we will do will be from 10-12 and 6-8. We do have a friend that is going to set up a website since I know a lot of you have been asking if you can bring us food that will help set up a schedule so we are not trying to figure it out ourselves. She is going to set it up this weekend and I will post more information as soon as we get it all set up.

We cannot thank everyone enough for all your generous donations to us, we are meeting with a worker from the hospital today to try and figure out some stuff. But it has helped SOOOO much! We are on a tight budget with Ryan not working and with just our general bills. We hate to be in this situation and to rely on so many people for help but you guys are the reason we are staying so strong!

(And thanks Sarah Dewey-Wind for the most amazing Diet Coke and Donuts EVER! And to your wonderful family!!!)


Update of Ashley's post...

Correction, Ryan does not snore.


Miss Malibu is a Rock Star!

Mallory did awesome last night, I couldn't bear to hear her whimper anymore so that sweet little girl has been snuggled up on my chest all night long. It's going to be hard getting used to working with all the things they have attached to her all the time, I am TERRIFIED I'm going to pull something out all the time. But the nurse assured us that we will get used to it and more comfortable as the days and weeks go by. The nurse kept asking also if I thought she was in pain, she whimpers a lot but how do you know and not know when your baby is in pain. They can't tell you whats going on, so I'm not sure if she is hungry or is hurting. But I have opted to give her medication as much as possible when she starts to wind up even a little bit. She hasn't eaten a drop in over 24 hours, her little tummy has got to be soooooo hungry! So we are waiting on the doctors to come in this morning and tell us when she can start eating and hopefully some other news.

They were not able to do the bone marrow biopsy, but that will be done next week along with the larger MIBG scan (again we will explain this soon as well). We should here about the bone scan sometime today though.

Ohhh and Ryan TOTALLY snores like crazy! I wish there was an easier way than digging my elbow into his chest to get him to knock it out. (I'm sure he will tell everyone he doesn't!)



Mallory was having a hard time with the NPO orders (can't eat or drink). She finally fell asleep, begrudgingly. Hopefully we can begin to feed her again in the morning.

She appeared to have some level of pain, and she had a fairly consistent whimper in between the full-on screaming. It really wasn't as bad as it sounds, but Ashley and I learned that we need to start growing iron stomachs to be able to watch Mallory go through the hard times. We felt entirely helpless. I'm afraid there is more where that came from.

Both Ashley and Mallory are sound asleep. I suppose I should go join them. 'Night.


a little update

They were not able to do the bone marrow biopsy, but that will be done next week along with the larger MIBG scan (again we will explain this soon as well). We should here about the bone scan sometime tomorrow though.

They are keeping Mallory as comfortable as possible. She is quietly whimpering, they are keeping up on her pain meds. We were also shown for the first time how to clean and prepare the broviac tube, we will be responsible for taking care of this when we get home as well. So they are going to demonstrate and go over it with us a million times so we are pro's before we have to do it on our own.