5 months

5 months since she was diagnosed, it has gone INCREDIBLY slow. It feels like we've been stuck in slow mode forever now, but 5 months have gone by, she's endured an unthinkable amount of crap and still rocking like nothing is wrong with her. I <3 you Miss Malibu.

Tomorrow is hopefully our last after Chemo visits to make sure her counts are back to normal, then its preparation for scan time.

I decided to occupy some of my free time by painting. I taped the hallway and cut it in tonight. It needed a fresh coat REALLY bad, we have flat paint all through our house and haven't painted it since we moved in 4 years ago. Little Fingers + Flat Paint = GROSS after awhile. So here I am painting, it feels GREAT to actually do something and freshen up our house a little bit. I am looking forward to going to garage sales this year to hopefully find some great finds to fill up some of the empty spaces we have too!

We had an AMAZING weekend as a family, we ate dinner together, we took a 3.5 hour nap on Saturday. We cleaned up the kitchen together, We laughed, we cried, and we had a really good time! :-) Each and Everyday we get to spend with these girls is a BLESSING.

I think she uses the exersaucer more than Mally does

I totally gave Jillian her first braid! WOOOHOOOO! (It's a small one but ohhh so cute)

Our Little Lamb is Cute as Can be!

The new "Wiersma" Memo board, my Mom is infact NOT allowed to paint while she watches Jill while we are off at clinic.

Jillian loves the Memoboard as well, although you can't really read gers at all.

Our Little Rock Star!

Sweet Sir Elmo

 

Our cat of 6 years died on Thursday. He just died, no rhyme, no reason, we just have no clue. So I am going to dedicate today's blog to him. He was a great cat (I know I sound like the crazy cat lady here), and I'm gonna miss him meowing at EVERYTHING. 

This is our luck lately.
He was a fat cat, yes, but seriously why did our fat cat have to die?

I really hope that most people don't find our blog to be overall dramatic, because lets face it my life is pretty much a Soap Opera.

I will however admit going out and getting drunk with my girlfriend last night and laughing about how much my life sucks. It felt GREAT, to have that big HUGE pity party that I've been needing, well yep feel free to say it "Your life SUCKS". I know someone will ALWAYS have it worse than our family but this past year we've been trampled on by life and yep IT SUCKS. So I need it to start looking up in May, so no bad news in may, just good news and lets just pray its the turning point for us. That everything will start going our way.

We are HOME!

Mally is finally unhooked from the IV pole, we drove home and she is playing contently in her exersaucer right now.

Today was a good day, Mally is feeling better. Although now I have Jillian that is sick, most likely she has RSV as well after talking to the doctors. So we are on house arrest and we have to closely watch both girls to make sure neither start having trouble breathing.

I met an AMAZINGLY beautiful woman today. Her name is Jillian and her husband works with Ryan here and there. She is a Stage 4 Neuroblastoma survivor, it was so empowering to hear her story and meet her Mom. I still have a zillion more questions for these wonderful women but to just meet them gives us hope that Mallory will make it through this.

It's hard to relate to our family if you have not been here yourself, remission is the term used to say the cancer is being "quiet", it could or could not come back. So remission is a GREAT word, it is not a word that brings peace, it does not bring reassurance, and we will worry for the rest of our lives about our dear daughter.

There are risks involved with intense chemotherapy, long lasting side effects. These we will have to worry about for the rest of her life. Something that we will be getting more information on in the next coming weeks.

A few of the things we've gone over is that Mallory will remain on Bactrium for 6 months after treatment to prevent Pneumocystis Pneumonia which she's been on since the start of treatment.

The will continuously monitor her Catecholamines and Leukocyte  numbers while in remission. They keep a close eye on the Catecholamines to make sure the cancer is not relapsing, once this number starts increasing it can show that the adrenals are excreting the hormone found in Neuroblastoma. We have to be very cautious about what we feed her 3 days before this test because certain foods can change these numbers and we don't want a bump where there shouldn't be. They will also do bloodwork to check to make sure her ANC and Leukocyte numbers. There is a chance from all of the chemotherapy she has received that she can develop a secondary cancer (AML Leukemia) which they will watch for very closely.

She will also have scans every 2-3 months to make sure her tumor is not growing since they are unable to re sect it. And make sure that it stays in remission.

We will have more information in the coming weeks, please keep us in your thoughts and prayers because even though she will hopefully be in remission it is still a long long road ahead of us.

We were supposed to start couples counseling this week Friday but I was just not feeling comfortable enough with who they set me up with. So next weeks challenge is to find someone that I am. For now Ryan and I are doing well, working on things slowly, and hopefully after the bulk of the stress is off of us we can continue and work towards a healthier relationship for not only us but for the girls as well.

RSV & Floor #6

We found out yesterday that poor Miss Mallory has RSV to top off crappy blood counts.

She isn't wheezing anymore thankfully, and they moved us to floor #6 because of all the kids on #9 (HMOC floor) have compromised immune systems and they didn't want her to give it to any of them.

So here we are waiting, waiting, waiting and more waiting. I had to cancel all my appointments for the week, because who knows how long we'll be here. The crazy life of an oncology Mom. I have only found 1 positive to being in the hospital and that's naps, LOTS and LOTS of naps. Something that is rare in our house since miss Jillian is stubborn.

Isolation

Day 2 turned into isolation fun fun. Gowns, Gloves, and Masks.
Mallory has some crud going on in her lungs now, so they tried a breathing treatment which didn't help and another culture to try and determine which kind of viral infection she has. Which is a swab up the nose which you can imagine a 7 month old LOVED. Yep poor girl cried herself to sleep. Still no word back on yesterdays blood culture and this new one but we should hear about both soon.

Hopefully if the blood culture comes back good and it is determined to be a viral infection and she doesn't need oxygen that we are able to go home tomorrow.

Room 902

were back inpatient because Mallory;s blood cultures that were drawn came back positive for staph infection. they are running another culture to check as well. No staph - 3 day stay with antibiotics. Staph - 10 days of antibiotics, joy

here we are again, so so so close.

3 am ER trip.

Last night I woke up around 3 am which was because Miss Mallory had developed a WICKED cough that concerned me. She has had watery eyes and a snotty nose since Thursday but it's just progressively been getting worse, and I decided that enough was enough and to bring her in. A CBC, blood cultures, and a chest x-ray later she has Bronchiolitis. So thankful that we didn't get admitted and we are just doing a 10 day course of antibiotics and a short 4 hour trip to the ER. Ahhhh the life of an oncology family.

I went to Walgreens to pick up her script and it said on the bag "your insurance saved you 105$". None of that pink amoxocilin crap for our daughter just the top shelf stuff please. Ryan and I chuckled about this and the fact that it came in a glass bottle also. :-p

Tomorrow we celebrate her 7 MONTH BIRTHDAY! I am so proud of my punky pie, this past 5 months has been grueling, exhausting, and horrible for her. She just troops along, I couldn't ask for a better kiddo. She's getting close to sitting up finally too!!! We are blessed <3 <3 <3

Mallory Aleda Wiersma born on September 23rd, 2011

Malibu - a week old

Mouser - 1 months old

Marshmallory - 2 months old

Punky Pie - 3 months old

Mallowcuppers - 4 months old

Sweetimurrrs - 5 months old

Cutie Patootie - 6 months old

(tomorrow I will update with a new 7 month picture of her)

Scan Dates

May 15th - Mallory has a Liver Ultrasound & MIBG Injection
May 16th - Mallory has her MIBG scan.

PRAYERS PRAYERS PRAYERS. The next month is going to be severely stressful for us. The scans are one of the WORST parts of the process, the uneasy feeling that stays in the pit of your stomach never goes away until after you get the results. AHHHHH XANAX COMA for me.

Today was a GOOD day

We spent majority of our day being lazy bums. Mallory slept on me for a great deal of the day (feeling pretty crummy from chemo) and Jillian danced, sang, and just goofed off. All 3 of us ended up taking a 3 hour nap, Jillian and I took a shower (we combine them in this house because either way Jillian will somehow end up in the bathtub, with or without clothes, my choice hahahaha!) Ohhhh and I actually had enough energy to MAKE dinner! GO ME! Ryan mowed the lawn and got the car washed too, where oh where has this energy come from all of a sudden?

Mallory is working on getting her 2 front teeth too :-) I see them coming and I can't wait! She also sat up for like 1 minute long yesterday with the help of the hospital couch (the pictures from the last post), she's starting to push up on her arms here and there too! She is getting there and I am SO SO SO proud of her.

Jillian also learned how to "HI PIE" today! (High Five!). She ate 3 potato chips for dinner, I mean really who likes potato salad, stuffing, subs, sweet potato's when there's chips around! Stinker :-p

Tomorrow is a CRAZY busy day for us, between clinic, therapy, eye doctor, plus a Celebrating More Birthday's fundraiser later in the evening we are PACKED.

Ryan is taking Mal to clinic, hopefully she won't have to have any transfusions so that he can just get her blood drawn, wait an hour, and make it home and back to work before noon. My Mom is sitting with Jillian at my house while I run to therapy and the eye doctor (my lovely lenses are cracking and I'm getting an exam as well)

I start therapy, let's see paper work is filled out.
Angry Outbursts (CHECK)
Anxious feelings (CHECK)
Grief / Loss (CHECK)
Mood shifts (CHECK)
Insomnia (CHECK)
Panic Attacks (CHECK)

I think I checked half the list off, ohh the joys of being an Oncology Mom.

Although Mallory has finished her chemo and we are celebrating this HUGE milestone, relapse scares the CRAP out of me. We have to go to continuous apt's to check her catacholomines, and have scans for years before she is deemed "cured", each year that goes by her chances of relapse go down and down. I want to be able to enjoy the rest of her first year without the constant fear in the back of my mind that this is a small possibility. Mal's neuroblastoma threw the doctors for a loop even, double adrenal gland tumors, non responsive to standard protocol, spread to the liver, and her age makes it hard to diagnose and it's been tough to treat. I just need to breathe, enjoy each day, and get through it. At the end of the day what is the most important is our family. Hopefully we can go back to living normal life, it'll be a change that's for sure, an adjustment.

It feels great to be home, to snuggle the girls, laugh with Ryan, and just enjoy our time together. Something I am totally looking forward to this summer. Cookouts, swimming, and just doing nothing besides chasing around the girls.

Introducing Dr. Mallory Wiersma

Malipie and her Dada

Mallory has 2 TEETH! (I had to make her mad in order to get this wonderful picture :-)

These are just a FEW of the many WONDERFUL WONDERFUL Nurses that have helped us through everything, we LOVE LOVE LOVE them all!!!

Jamie was our nurse on Mally's last night of chemo. She was also one of the first nurses that really helped us through Mallory's diagnosis week. I honestly feel so blessed to have worked with her, she really brings a smile to your face. She is just AMAZING!

This is Dr. DeMarco, she was the resident doctor on when Mallory first was admitted. She Hugged us, cried with us, and by chance she was again the resident doctor on the floor on Mallory's last night! She was just incredible. (Along with MANY MANY of the doctors we have worked with!)

 

Mallory ADORES Laura one of our many techs, she just lights up whenever she walks into the room.

We were sent this AMAZING SUPER HEALING POWER TURTLE from "Max's Love Project". It is a great organization that sends kids fighting cancer these turtles. Please take a moment to check out this wonderful wonderful family that sends these out, they sent a case of 6 to us that were given out at Helen Devos, you can donate money to sponsor a case or even a single turtle for a child!

We still have to wait 3-4 weeks for her scans and will update when they are and as soon as we get any of the results back. Until then we are going to attempt to get back in the "normal" swing of things, and continue to hope and pray that the chemo did it's job. THANK YOU EVERYONE FOR EVERYTHING!!!! Please keep us in your thoughts and prayers through the next month as it will still be a tough process.