Pictures, Pictures & More Pictures

Chemo Round #4

Sissy - "JUMP A JUMP"

OUTSIDE FUN FOR ONCE!

Mallory decided my shirt would be the perfect place to vomit all over so Mommy got to wear an awesome scrub top till we got admitted!

Round 5 complete! :-) There were a lot of smiles, less puking, and a lot of fun!
We recieved good news that the cancer IS SHRINKING! It made this round more tolerable and less stressful!

My girls <3 each other hahahaha!)

23 days.

That's how many days we've spent in the hospital this month, a day off here and there. All I wanted was for this day to get here so we could go home and Mal's numbers tanked already. So hello blood transfusion #8. Hello 4 o'clock discharge.

Should be greatful that we're going home today but I'm doing it grudgingly and mumbling swear words under my breath at stupid cancer once again for foiling my plans for the day.

I lost my cell phone once again (I've never mentioned how much I rock at doing that.)

My moms at my house cleaning, soon momma soon we will be through this and I can go back to doing laundry, dishes and possibly even a little landscaping. I can't guarantee I wont mutter some swear words through those chores though but ill be happy to do them because it means my life will be a little less crazy if I have time to even think about a dish to clean.

Anyhow well ok I am done with my whining for the morning, April's just going to be a better month for us.

*sticks out tongue at Neuroblastoma, effff yewwww*

Cancer

Cancer, ugggh cancer.

The day Mallory was diagnosed I began to slowly write her funeral. What songs, what flowers, her tiny casket, how we would take the letters off her wall and wipe away the sweet nursery we made for her.

I have played this image over and over and over again.

When people would tell me to stay positive, to pray, to have a little faith the only thing I could think was 1 in 5 kids die when they are diagnosed with Cancer. Its the ugly ugly statistic.

I am feeling very blessed that Mal's CT came back amazing, that hopefully she'll be done soon. We still have years of scans, urine checks and blood draws after this. She has a 15% chance of relapse, there is "no evidence of disease" for her since they are leaving a tumor in her, once the chemo is done we're not still.

I have met SOOO many amazing families. All I can say is that there not done so neither are we. So we will continue to fight not only for neuroblastoma, but for luekemia, sarcomas, and all other childhood cancers.

Kaydance, Blair, Lola, Benjamin, Alyssa, Oliver, Asia, Gwen, Ike, Taryn, Issac, Aidan, Adam, Willem, Alayna, Gabby and many many more.

I will be one of those annoying people that never stops advocating for a cause. Even after Mallory is done with floor 9 and 10 there are many kids that are starting there fight and who have years and years of treatment left.

I am Sweet Baby Mallory's mom, the purple power ranger, the social butterfly, a good wife, a GREAT mother, a childhood cancer advocate, and just your average person. I've found a little light and I'm going to let it burn bright.

Happy 6 Month Birthday Malibu

6 months ago we help this perfect sweet baby girl in our arms for the first time. 2 months later our lives were shattered, and for 4 months Mallory has fought like HELL. We have had some pretty tough days and we still will in the next coming months but this little girl was worth everyone of those.

Today we CELEBRATE!

Mal has had:

2 open abdominal surgeries
3 broviac placements
4 rounds of chemo (about to start her 5th)
6 different chemo drugs
5 emergency room trips
29 dressing changes
1 bone marrow biopsy
3 CT scans
1 MIBG scan
7 blood transfusions
2 platelet transfusions
She lost all of her hair
She has been on 5-8 medications daily for 4 months now
She has had her blood drawn over 20 different times.
She has had numerous IV'S
She's had her blood pressure, pulse, and tempature every 4 hours or more when we're in the hospital.
We have spent 2 months in the hospital over the last 4 months.

But above all, through all of this, she SMILED every single day she endured all of this.

I know we still have to fight to get her into remission, but she is a teeny tiny little FIGHTER and I know she can do it. I am praying everyday that we continue in the right direction that she will live to be 100 someday.  But for now we CELEBRATE 6 months, 6 months of having one of the bravest, most incredible kids I know.

We love you MISS MALLORY! HAPPY HAPPY HAPPY 6 MONTHS PEANUT!

The sun is shining today!

The Bad News First

Mallory has to have surgery today to replace her broviac once again. When we left the hospital on Tuesday I had noticed a smudge of blood on her onesie and today the same thing. The NEW line was leaking as well, uggghhh. So at three she will have another surgery, at least its under sedation and a generally easy procedure. More antibiotics and we delay chemo a day.

The GOOD NEWS (or actually the GREAT NEWS)

We were able to discuss Mal's CT results with Dr. Axtell today. Mallory response to these past 2 chemo rounds were INCREDIBLE! Along with amazing catacholomine numbers.

Her numbers are within the normal range and the tumor has shrunk a significant amount, so well that he is only anticipating she will have to do 2 more rounds (so this one and the next one in 3 weeks). That's 6 WEEKS LEFT!

We are over the moon with these results and the SUN IS SHINING BRIGHT AS BRIGHT AS IT CAN BE!

If everything stays on course we will be looking at another MIBG, CT, and ultrasound of the liver after these 2 rounds with Lord Willing the best possible results.

Having our daughter kick cancers butt, see results (better than we thought!), and to know all that she has endured and suffered through is working just makes us fall down on our knees and PRAISE THE LORD! We will continue to pray every day for healing, to give us strength and guidance and to put our loves in God's hands, he is the only one that knows the plans for our family.

So we ask everyone to pray, send positive energy and cheer our little girl on for the rest of this fight. Its been a long 4 months but our baby has been worth EVERY SINGLE tear, breakdown, argument, smile, laugh and snuggle.

MALLORY ALEDA YOU AMAZE AND INSPIRE US!

Goodbye Hair

I have been contemplating cutting my hair off for a LONG time now, I was waiting for our wedding and was going to do it right after that (but with postponing it it will give me another year to grow it out anyways!) but finally TODAY I decided that I am GOING TO DO IT! So Goodbye Hair, Hello New short Easier Hair!

My hair is long enough to donate it to Locks of Love as well! So to be able to help out a kid with Cancer is an even bigger reason for me. Although Mallory would not benefit from a wig, I have met MANY MANY kids that would. So It feels GREAT!

Plus it will be easier in the hospital to have short hair, quicker to wash, dry, and have it look good for once. Not to mention it'll bring down the price of shampoo for me! :-p

Mallory's CT was AMAZING! The tumor has shrunk 1/4 of the original size, and her chatacolohmines (sp? seriously some of the medical terms are SO hard to spell correctly!) are NORMAL, Beyond AMAZING news. We get admitted for Chemo tomorrow and will actually be able to discuss everything with Dr. Axtell then, but for today we are going to enjoy some more sunshine and possibly some ice cream to celebrate.

Ohhh yeah and on Friday we will be celebrating Mallory's 1/2 BIRTHDAY! WOW My little chickadee is going to be 6 months old! What a ROCK STAR!!! :-)

Annoyed

We were discharged this morning without talking to a doctor, he came in saw we were sleeping and didn't bother to wake me up. Yesterday I was in the shower and he never came back.

I was hoping that instead of leaving we could start chemo early but of course no answers on that because all we did was talk to the discharge coordinator instead of our primary doctor. She said because her line broke we needed to wait which is BS since they ran fluids for 2 days straight, then she said she talked to Axtell our primary and they had to come up with a chemo game plan.  Which i also think is bs and why couldnt i directly talk to him instead of secondary crap. They better not switch her chemo if its working, I'm also going to question why we are not looking into a stem cell transplant (its never been discussed before). I want the best of the best for her and what to know all of our options. If it will increase her rate of survival then why not.

Arrrggg ohhh well sitting and enjoying the sunshine for now I suppose.

Good news

MALLORY'S TUMOR AND LIVER LESIONS ARE SHRINKING! Praise the lord!

We may even start chemo early!

It WORKS

Broviac works! Wooohooooo!

And CT was bumped up to today! Please pray for MALLORY!

Revolving Door

Two days home; I think that's a new record. We're back in the hospital for yet another unscheduled visit.

This morning I hear Ashley shout out "Ryyyyaaaaaannnn! Mallory's broviac is leaking!"

Ugh. The Broviac tube is the tiny silicone tubing that goes into Mallory's chest, and taps into her aorta. It is used to supply drugs, and to draw blood back out. It has two safety mechanisms to avoid leaks or contamination: a mechanical clamp that pinches the line shut, and a spring-loaded valve cap on the end of the line. Those safety mechanisms are are fine and dandy, unless the line breaks further up the line.

Ashley was performing the morning drug ritual on Mallory, and one of those steps includes connecting a syringe to each of the end caps of Mallory's broviac tube, and pushing in "VCH" (Vanco/Cipro/Heparin, for those of you who are keeping track... two antibiotics and an anti-clotting agent).

This morning when Ashley started pushing in the VCH, she said the tube started spraying everywhere; it had sprung a leak.

We both instantly sprang into action, knowing exactly what to do without even having to discuss it. Ashley got on the phone and called the hospital, I started examining the tube to stop the leakage before we could get to the hospital. I folded the line over above the split, and crimped it off using a zip-tie out of my garage. Ashley jumped in the shower, and I got Mallory ready to go.  Off they went, and I made arrangements for Jillian. I had to meet up with Ashley and Mallory later at the hospital.

The hospital is highly vigilant of a bacterial infection for Mallory. This is why when Mallory runs a fever we end up spending 4-6 days in the hospital. Same with a broken line; they are so careful to avoid an infection that they immediately start dosing her with antibiotics when she walks in... just in case. They draw blood and have the lab culture the blood over a period of days to see if any bacteria will grow. If bacteria grows on the cultures, they know she had a bacterial infection, and they keep dosing her accordingly.

After commenting on my zip-tie ingenuity (*pats self on back*), the doctor cut the line clean off and spliced in a   temporary patch. Now we have to wait 24 hours before they can test the patch to see if it left us with a viable broviac line or not.  If it is not viable, Mallory will be going in for surgery #3 to remove and replace her broviac line.

The girls are sleeping soundly now. Good night, all!

-Ryan

In a perfect world

everyone would have love :-)

I am feeling incredibly blessed tonight.

For one my punky is HOME again! Her numbers SHOT up over night and she has been surrounded by so much love from people near and far through this whole journey. 

Our CT is on Wednesday we will have the results by next week Thursday, I am on my hands and knee's praying for some good news, even if its just a little, I just need to know that we are going in the right direct.

Dear Lord, I am giving you my burdens, my daughter's health, and every plan you have for our family and laying them at your feet. Let it be your will to work miracles in our lives, to give us strength and healing.

I believe my mental breakdown had to happen, it had to. Not only to analyze our lives, but our situation, our relationship. It taught me most importantly take the help I am offered. I am a stubborn, stubborn person and it's to the point where I NEED people to tell me it's time to step back. Let someone else take a turn, have faith in others when I have no faith left, when I have nothing left to give, that it's ok. It's ok to ask for help, it's ok to be weak, it's ok to walk away for a little bit.

My daughters will benefit from a more stable mother, and so will my family and Ryan. I know all 3 of them will understand why Mommy takes a break, why Mommy needs time for herself.

I have decided to seek help. Being able to lay the weight of my shoulders on an empty ear sounds like the right move. Tomorrow I am on a search for a good therapist, I will have to make time for this. I was going to wait till after Mallory was better because my life is hectic as it is but this will ONLY make me grow as a person, it will only help me cope, it will only help me heal. To save my relationship with Ryan, Our families and my friends this is the best choice for myself. I am on a low dose antidepressant and recently added an anti-anxiety med to help, so hopefully in combination with both I can become a solid solid wall.

I feel like Ryan and I are 10 steps ahead again, we talked, sorted through the madness and came up with a game plan to make this less stressful on both of us. To make it easier on the girls too! So proud of us, we had a civil conversation with no fighting, no screaming, and no bickering. Just honest real answers. It was PERFECT, just what we needed! The number one thing we are going to work on in our home and with our children is first and foremost Encouragement and Praise. I don't think we do enough of this but I want my girls to know when they are doing a really great job, I want to hear when I am doing a great job, and I want Ryan to know he's doing a great job! We have decided that there is a "pause" button (How I met your Mother idea) for when we need to have a "Parent Time OUT" so we can sit for 5 minutes, gather ourselves, and become more rational, realistic people. There were many many things discussed but this are some of the BIG issues (that might not seem bit to some people but to us they are HUGE!) Our hospital stays will be divided up as well, we will come up with a game plan for each week and go from there. 

Safe And Sound

Dear Sweet Mallory,

We are all fighting with you girl. We held you in our arms almost 6 months ago and we knew you were the missing peice to our family. You are something special little one. Someday we are all going to look back on this and just recall bits and peices of this craziness. Dear Little Girl you have to fight, and FIGHT HARD so that we can see that bright smiling face every single day. S o that we can comfort you when you cry, kiss your booboo's when you fall, and have you to cuddle up to everyday for the rest of our lives. So baby please know that we love you, If I could change places with you know that i would in a heartbeat, You have done nothing but smile and troop along through everything and I just want to tell you that WE love you so much and we are SO SO PROUD of you!

- Mom & Dad

Dear Jillpie,

You have been the light of our lives since you were born. You have taught us so much more than we could have ever anticipated. Having you in our lives makes in complete. You are incredibly brilliant 2 year old with a heart of gold. I wish I could spend every day with you, holding you, laughing with you, and singing our "ABC'S" all day long. You make this easier on us because of your strong strong independance. We love you so much and enjoy every single moment we have with you. You just amaze us everyday. We are PROUD of you too! You were thrown into a completely different world since sissy has been sick but someday sweety it will get better.

-Mom & Dad

Dear Ryan,

I am not sure how to communicate the love I have for you. It is unconditional. I am sorry that things are not going the way either of us planned for but you have stood by thick and thin. I believe you have different coping mechanisims than I do but I need you to share too. I need to know how you feel and what you feel too. I will never let this go, I am in it for the long run, we will FIGHT not only for our little girls but for ourselves as well. Because once you stop fighting you get defeated and theres no turning back. We have a brilliant 2 year old and an amazingly stubborn 5.5 month old who is so sick, sicker than we have neglected to accept. She needs us, so does Jillian, and so do I, I need you too. I love you, I am not turning my back on you, I am not giving up, I will never give up what we have, it's too special. People envy our love, so no I refuse to throw it away because of this. I love you big lug, and I want to spend the rest of my life with you. Grow old, grow tired, and grow deeper in love.

-Ashley


I remember tears streaming down your face
When I said, I'll never let you go
When all those shadows almost killed your light
I remember you said, Don't leave me here alone
But all that's dead and gone and passed tonight

Just close your eyes
The sun is going down
You'll be alright
No one can hurt you now
Come morning light
You and I'll be safe and sound

Don't you dare look out your window darling
Everything's on fire
The war outside our door keeps raging on
Hold onto this lullaby
Even when the music's gone
Gone

Just close your eyes
The sun is going down
You'll be alright
No one can hurt you now
Come morning light
You and I'll be safe and sound

Just close your eyes
You'll be alright
Come morning light,
You and I'll be safe and sound

I fall down on my knees

I am no longer able to care for my child because I have neglected to care for myself.

I have spent so many nights awake with her, even when she is sleeping I can't take my eyes off of her. I just don't want to miss one moment and that has caused me to have a full mental breakdown. I am not deserting her, I never will but I have spent the last 4 months caring for her every need, waking up with her, giving her shots, medications, comforting her when she is miserable. Now it's to the point where I know that I need someone to help me out (most likely counsling).

You haven't walked in my shoes most likely, and even the people that surrond me haven't. They support me, give me encouragment but I am bogged down.

I finally hit that BIG mental breakdown. The one where the next person that says one snide comment to me is going to get it, I WILL lay into you.

Can you honestly think that we should even begin our marriage as bitter and angry? No, I want to walk into marriage as a whole unit, not a resentful miserable person. This is one of the big reasons why I am canceling it. Ryan and I are not getting along, we haven't for a few months now. I open and honest about this because I REFUSE to sweeten up the facts. No amount of date nights can fix our situation right now. I will Marry him someday because I love him, he has stuck by us and supports us. We will in time mend what has been taken from us because of Cancer. I know I am too hard on him, I yell too much, I lose my cool too often, but I feel like I have spent so much time doing this alone. This may or may not be the truth but I have been handed over a lot and I am resentful because he gets to go to work, he gets to live a normal like part of the time, he can go in the basement and play video games, he has an escape, I don't. Here I am stuck in a hospital room or with a crying baby on me all day long at home. I am sure he wishes the tables were turned and he could spend more time with Mallory. I know he is doing a good job, he is a GREAT dad, he is still my best friend, I still love him so much. I am sure with some time we will get back to the world that we used to have.

I had pictured my life so much differently.

I am tired, flat out tired, I am doing my best, but best isn't good enough. I have to get better, I have had a hard time handing over my child for someone else to care for because I am her Mom, and I should know best and right now there is no "normal", there is nothing I can do to comfort her outside of morphine and benadryl.

So please your negativity isn't welcome. My child has cancer and she has been my main focus for months and If you see me as weak for walking away for a little bit then to hell with you too.

Re-admitted

Mally spiked a fever, so we ended up at clinic at 8am. That led to blood cultures, CBC, and antibiotics. Poor girl was super dehydrated on top of her counts "sucking" as the doctor said.

She's had blood pooling in her nose (I had figured her platelets were low), her count was 20,000 normally its 200,000+.

Her white count is 50! (NOT GOOD!) She has 0 ANC too.

She had her first platelet transfusion. We had a good 5 days at home while we were there. Hopefully she will bounce back quickly but that's not looking likely with those numbers.

We are also canceling the wedding, a decision I have thought long and hard about but its honestly causing too much stress. We just need to take care of our girls and focus all of our energy on them right now. I just feel this is very important to remain emotionally stable and strong. We will not be doing a courthouse wedding because it is very important to both of us to have a religious meaningful ceremony, I am also sure that I want us to write our own vows as well.

So whatever, just another bump. We just need our daughter to be healthy so she can fully enjoy our wedding as Well. We are a family with lots of love regardless of a wedding or not. Ryan is my best friend, an amazing father so we are already in it for the long run so cancer you can $#%& off.

My favorite part of the day

is NAP TIME!

We've almost made it! (It's 1 pm and Jillian usually goes to bed around 1-2ish, the zoning out has started so I know we're getting there!)


Mallory has her CT scheduled for March 21st and Chemo starting again on March 22nd. We should have the results back by clinic on the 22nd. I just pray that we get some good results. This chemo is super hard on her and she struggles everyday with feeling good. I am dreaming of the day she is NED (No evidence of Disease).


I am struggling with the "what if's" again. I know whatever happens, happens. But I can't even begin to imagine, nor do I want to go through life without her. I don't want to take the letter's off her wall, or pack away any of her stuff, I just could NOT do it. So I am hoping and praying we get more good news with this CT, that it shows this cancer is finally responding to treatment, she has been through more in her tiny life than any person should ever have to go through. I pray for her everyday, that she just will continue to thrive through this and grow up to be a naughty 2 year old just like her sister.


We will hopefully be home for Easter, this is another holiday that will be spent on house arrest. I am going to make it SUPER special, we are going to make cupcakes, hot subs, an egg hunt, and just vedge at home. I have to go shopping for the girls so they have an Easter "outfit" as well. We are going to spend the day celebrating Jesus and all the things in life that we have to be thankful for because of his sacrifices. Even though we will not be going to church, or spending it with our relatives, it will be a great day. A day we get to rejoice and spend together and to praise God.

We made it home today!

There is nothing like walking into your house and smelling freshly baked cupcakes (Ok so I totally cheat and have my Scentsy going! Not actual cupcakes lol!).

We made it home, Mallory is doing well. I would have opted to stay another night because she is still pretty cranky. But I talked to the physicians assistant this morning and he ok'd some at home Benadryl. We also discussed that she should be eating around 20 ounces of formula a day and that if she wasn't doing good with that to call clinic in the morning and we would push fluids tomorrow. So I am feeling confident in our choice to come home! (Even if we have to drive back for a few fluids tomorrow but so far she has drank 14 ounces so that's ONLY 6 more to go tonight so I think she'll make it!)

Mallory and I took a nap on the couch, she was a little cranky but nothing a little extra sleep didn't help. So we snuggled up, I smell like baby spit up from her drooling over me. Pretty sure my chick-a-dee is teething.

Ryan took Jillian for a "Daddy Daughter Date" and he refused to divulge where and what they did. It was strictly confidential between them, hahahaha! Seriously LOVE that guy! and HOW FUN for Jillian to get out with her Daddy. Feeling super blessed to have such an AMAZING guy in our lives!

I had a LOT of panic about our wedding this weekend. Mallory's chemo if it stays on track will be the weekend of our Wedding (July 7th). But talked to the Doctors and they are pretty sure we can work around it because she will have been in treatment for so long. So hopefully it all pan's out, plus she won't be super neutropenic (her body will have recovered by then) from chemo still so it should work out better this way. So thankful they can work with us! I can't wait for July 7th, I have had no time to plan, no time to make ANYTHING for the wedding, but ohh well If it's just me in my fancy smancy dress and ryan all dressed up along with the girls then so be it. It will be PERFECT! :-)

We also got a nice big envelope in the mail today with insurance statements from last year and this year, a nice 40 pages worth of statements I would guess. We already hit our entire deductible and capped out the out of pocket expense already this year but luckily Mal's 2nd insurance covered most of that. I need to get her a shirt that says "Million Dollar Baby".

We also received a box of goodies from an AMAZING family in texas. Mallory got TONS of organic baby food, HOW AWESOME! And in little pouches with spoons that at attach, I've never seen anything as cool as those. We will be treating her to some yummy organic baby food ASAP! Plus Mallory got a BEAUTIFUL silk baby blanket today. Big Sister Jillian got a few doll's that I am sure she will snuggle up with tonight. And a few gift cards. I am just so touched by these warm gestures from everyone, our family cannot thank you enough for making the transition to so much time away from home that much easier. I am just amazed and speechless. WE LOVE YOU ALL!!!

I am going out with 2 of my favorite ladies tonight! Woot Woot for Girl's Night :-) This Mom needs a break and little wine to get back in the swing of things at home.

I see hope in a little girl

This chemo started off GREAT! Mallory has been a trooper minus some more throwing up than usual but I can't complain to bad for all that she has to endure she just keeps on shining through.

As of today there were a few complications, her hemoglobin hit 7.3 the lowest it has ever been. She developed Tachycardia (an irregular heartbeat) because of the hemoglobin being this low. She had a blood transfusion today hoping that will straighten that out. This is her 6th one since she was diagnosed and the largest amount she has ever received.

She has been extremely restless, she just cannot calm down. She just moves, and her lip quivers and her smile just is barely there. She was finally able to get a little bit of rest early this afternoon and a nice walk around the circle.

We had 2 young children (1 for 2 nights and the other for 1) in the room next to us that you could hear straight through the wall making it very difficult to sleep for 3 nights straight and then last night Mallory could not calm down so needless to say this Mom is EXHAUSTED!

Mallory is just not herself, her blood counts are already super low and we still have chemo tonight. :-( Poor Sweet Pudding.

I have met SOOOO many amazing wonderful incredible people this week. What a blessing to have such hopeful, inspiring people to look to for support and guidance. I pray for their little children too as we are all on this road together. So we love you ALL SO MUCH! You have touched our hearts in every way possible.

My parents are just SPECTACULAR, they went and got Jillian a new twin bed for there house (THANKS NANCY!) and new bedding that she just LOVES. How special is that her own big girl bed for when she stays the night! "Tinkle tinkle lil staaa, how wonner what are? Up abooo ta world so sky. Tinkle tinkle lil staaa" - Jillian is sooooo sweet. She started singing to us ALL the time. She also prays with us now and we say "God Bless Mommy, Daddy, Mallory, Jillian" and She always chimes in "Nana, Nana, Nana, AMEN". This brings a huge smile to my face.

Catecholamines (I spelled this HORRIBLY wrong on the last blog!) are excreted through the urine. They tell us her adrenal hormones that are typically high in neuroblastoma, we want these numbers as low as possible. When she was first diagnosed they were in the high 200's, came down to 140 after the first tumor was removed and back up to 170 and now with just 1 round of chemo they are at around 60. They are divided into 2 number VMA and HVA and both numbers have dropped significantly. This is a good indication that the chemo is doing it's job although nothing will tell us more than her next CT we can only continue to pray that this is the right course of treatment she is on. Although it makes her very ill we know we are doing everything that we possibly can so that our daughter can continue to live her life, so that she may have many days on this earth. I leave this weight on God's shoulders to get us through this no matter the outcome but pray each and everyday for healing, for strength and guidance.
I updated Take them a Meal
If you have to search use "Wiersma" as the last name and the password is "love".
We are looking for people that can bring hot foods up to the hospital and lots and lots diet cokes lol.

We are not just asking for you to bring me food and leave but I sit there majority of the day doing nothing but rocking mally, sleeping, it gets pretty boring. So some company would be great as well.

Cycle 2

So far so good. Mal is doing great!

We got great news catacholomines are 60! They were in the high 200's when she was first diagnosed. So it will be interesting to see what her CT shows. Ill make Ry write a blog with all the technical information later today to better explain, I'm on my nook so it would take a day and a half to write plus a lot of cuss words so we will just designate the task to him.

I want things to be "normal" again

I really want to enjoy Mallory being a baby, but is it just bad of me to wish this year away already? She has at least 6 more rounds of chemo after this week left. That's just months and months of cancer crap that we have to deal with and not even knowing if it's going to work or not or if it will be extended...

A day in the life of me starts by waking up, drawing up 5 different medications to "try" to get her to take. Sometimes resulting in a vomit or two and I get to start the whole process over again.

Drawing up heparin, flushing her lines.

Getting Jillian breakfast, changing both girls diapers which lately has been a whole ton of blow outs in the morning so we usually end up with a morning bath.

By the time this is all done its 10-11ish.

Drawing up 1 more medication around 12. Changing both girls diapers.

Then its nap time, which sometimes happens and sometimes doesn't. It's hard to get a schedule for either girl when life is so hectic right now.

Changing more diapers. (It's inevitable when 1 girl poops the other does too!)

Attempting to get around to doing some type of housework which usually doesn't work. Then trying to plan dinner, but who has time for dinner when you barely have time to go to the grocery store and everything goes bad before you can use it. So we are a preservative only diet right now (healthy, right?!).

Jillian almost ALWAYS gets a bath after dinner because the girl just can't help but make a mess.

Get Jillian tucked into bed with a book, prayers and lots and lots of kisses.

Every 4 days we change Mal's dressing over her broviac which is turning into quiet the fight with her rolling around, tugging on her lines, and just being a baby in general. Remove old dressing, apply 3 beta dyne swabs, wait for it to dry 3-5 minutes, then apply new gauze and tagederm all while wearing masks and trying to keep her busy and as sterile as possible.

Every week we have to change end caps, which is SUPER quick and easy but still tedious and we have to be as sterile as possible.

Draw up 2 more medications. Put a some numbing meds on Mal's leg.

An hour later give Mally her Neupogen shot.

Ohhh wait then throw in an appointment or two multiple times a week. Not to mention she's going to start crawling, teething, and possibly walking during all of this. Taking care of Jillian's basic needs.

I can't make my own baby food because it would be just a pain to try to transport it back and forth. Then there's the fact that I am afraid that I wouldn't make it sterile enough. I LOVED making baby food for Jillian, it was seriously one of my FAVORITE things to do. Call me crazy but I just enjoyed so much of it.

Then throw in the fact that Mallory is a HORRIBLE eater and sleeper. I totally can't blame her. She just has NO way of getting on a good routine, during chemo we wake her up every 2 hours for diaper changes, she will NOT let you hold her for most feedings. Most of this started after the initial tumor resection, and has gotten worse since her last surgery. She wants to lay flat and not be bothered. So here I am propping bottles, letting her sleep with me, and creating such bad habits because I have NO choice. A mom can only watch her child suffer so much before desperation kicks in. So yes my child will most likely have a bottle till she's 5, she will most likely sleep with me till she's ready to go into her own room. I have no guilt, this is not the road I would choose had I been given a choice.

I am complaining, flat out complaining. I should be able to look forward to her rolling over, but when you go to the bathroom and come out and your child has IV lines wrapped around her head that equals not much fun. Ummm crawling on those nasty hospital floors with a cord coming out of her chest, I am terrified once she starts she's going to rip it out of her chest. Teething, talk about having a meltdown over so many fevers she's going to run just because of them!

Throw in poor Jillian on top of all of this, her life revolves around Cancer too. We have to drop her off at the drop of a hat if Mallory gets sick, she has to stay away from us weeks at a time. She doesn't understand any of this, she just turned 2, she shouldn't have to go through this EITHER!

I just wish I could look forward to all these things. I do look forward to her getting older because I just know with each month she gets is another month we get to spend with her, it's just trying, emotionally draining, and exhausting.

I love Mallory so much, wouldn't trade her for the world. I am not complaining about having her, because she is great, spectacular, resilient and much stronger than I could ever be. I just wish we could go back to normal life, life before cancer. I just liked it so much better.

Success

This weekend has been AMAZING!

We had around 60 people show up for the blood drive only around 50ish could donate but what a GREAT turnout, that's 150 people that can be helped by such a small effortless act. WAY TO GO EVERYONE! (even if you were not able to donate we still appreciate you coming and showing your support!)

Mallory has been fantastic since we got home on Thursday. She's chipper as ever, eating great, and smiling like a champ. She is on a new medication called "Megace" it has done WONDERS. The oncologist on the inpatient flood this past week that she is no longer gaining and hasn't for the past month almost. Our next option is a feeding tube after this. So far so good, she is drinking 32 ounces or more a day! Which is WAY more than she normally does or more than any baby really, now if we could get her past 4 ounce bottles that would be great, but I'm not complaining I'll take the constant feedings over a feeding tube!

We have a busy week coming up, Mallory has clinic on Monday to check her counts. Also I am pretty sure we are going to have to degunk her lines because they keep getting pretty hard to flush. They still flush thankfully but we don't want anymore problems with those lines, Mal has had enough surgeries and scars, the poor punky does not need anymore.

I have a MOUNTAIN of laundry that at some point needs to be folded and put away, thankfully my wonderful Mom is going to help me out with that. (and possibly Kari too if we don't get around to it all!). I have always been bad about folding laundry but now I HAVE TO or else I spend more time digging around to pack bags than if I just folded it in the first place.

My parents also cleaned and vacuumed my house while we were at the blood drive, how awesome are they? I only have a week at home, no motivation, and 0 energy left lately. It's great to know that I can count on them to help out when I get so run down after awhile.

We also have Jillian's follow up eye appointment from her surgery. She in the past has been SO SO naughty when it comes to these. She screams, and kicks, and gets so mad. Hopefully the 6 month break from them will make it a lot easier. She had a lazy eye as a baby, she had glasses, and an eye patch. Her eyes now look spot on so hopefully the ophthalmologist will feel the same way! I am sure this is going to end up being a 3-4 hour appointment but ohhh well.

We have chemo again on Thursday, that runs for 6 days. If anyone wants to come visit and bring lunch during the week this Momma would think the world of you. Friday - Tuesday are GREAT days for visitors. The last round of chemo went without a hitch, Mallory did GREAT so we are hoping it's the same.

Then 2 weeks from that we do another CT! I have no idea what I am going to do if it doesn't come out with good results, I am not going to touch on this right now because my focus is getting us through this next round. I've got my fingers crossed, chin held high, and praying all the time.

-Ashley

Mallory's 1st big step to CANCER AWARENESS!

Blood Drive is FINALLY tomorrow.
We are PUMPED!

Mallory received her 5th blood transfusion this last hospital stay. These improve her quality of life, they give her the spunk back in her smile, and she just feels 100% better. I know that these do SO much for her, I pretty much can tell you whenever she needs one because she gets pale, splotchy, and lethargic.

If you are able, if you can, please help make this drive a HUGE success!

Go HERE! To sign up!

Or show up at the

Walmart
4542 Kenowa Ave SW
Grandville, MI 49418

HOME

We made it home today! Mallory is doing FANTASTIC! I will do a longer entry tomorrow on some of the other details. I am going to attempt to let her sleep in her own bed tonight, this whole week at the hospital she has slept with me in the rocking chair and personally I want to lay in my bed arms stretched out wide by myself :-) Love my noodlebugs but sometimes I just need some "me" time. I could never 100% cosleep even though I feel we are doing tons and tons of that lately (and for good reason of course). I just like my bed to much to share it. :-p

Positively positive

Mallory's c-dif test came back negative woohoo!
Her ANC is 23 (needs to be 200 to go home) but its above 0 finally!
Mal is eating like a rock star!
I got to leave for a few hours and spend time with Jillian and have a nice quiet dinner with Ryan.
We're back at the hospital and I've got a more level head, I just needed some time away.

The little boy that has been waiting on a liver is receiving it RIGHT NOW! please say some prayers and to the family that lost there child and have the strength to save this boys life. And prayers that the surgery is a success! This little Guy has been inpatient everytime we have and has touched our lives.

This being said everyone that has fought, survived, passed away is part of this oncology family. We are here to support, not judge, and to have an understanding for each others situations. No 2 cancers are alike, each patient is an individual, has there own story, has there own battle and we only should uplift and.encourage them.

This extends to everyone as well. Someone will always have it worse, have it harder than you, but you are still entitled to your own story. Life is not a competition. We do not tell our story so that you will think we have it worse than you. To be completely honest we tell our story to bring awareness, share our hope, and spread our love.

We will share our ups and downs but not so you feel sorry for us but so we can be Mallory's voice. So in 10 years we can show our daughter what she overcame, what she fought, and how it made her the person she is.

We have a lot of faith she's gonna pull through this. But we have a long tough road until we are even close to any finish line.

IGG

Mallory is currently receiving Immunoglobulin G IV medication. She has not been able to be vaccinated since she was diagnosed so her little body cannot fight off anything currently. They will continue these medications once a month through Chemo, she will not be able to be fully immunized until 6 months after treatment ends. So until then we will be monthly IV's to help her immune system out. Hopefully this will prevent some future hospital stays.

She is doing MUCH MUCH better today. Smiley, happy, and all around in a GREAT mood. We are still unfortunately stuck here until her ANC bumps up to at least 200, currently it is at 0! :-( Yuck. We do daily neupogen shots that help boost her bone marrow production, so hopefully we will see an increase soon. I know her and I would benefit for a few days at home before we come back next week for Chemo.

They started Mal on a new medication today to give her more of an appetite. She hasn't gained any weight since her last round of chemo so we are trying this to prevent her from having a feeding tube. So I hope it works! So far today she's done much much better! It will take a few days to completely bump her up but I've got my fingers crossed. Mal has NEVER been a good eater but then again she's always had cancer and who knows if its the cancer that effects her or if its just the way she always would be. But I've got my fingers crossed that she does much better on these meds!

I went and saw Jillian yesterday, I walked into my parents house and she says "WOW!" hops off the couch and jumps in my lap. Such a good feeling when your kid misses you so much. I have to spend so much time away from her, it just seems so unfair. One of the things that bugs me the most is that we decided that I would be a stay at home Mom shortly after Jillian was born so that she could get the most out of her childhood by having me around and here we are not seeing my kid for 2 weeks or more a month. It just sucks. Cancer sucks.


I miss being home. I miss running around with Jillian. I miss seeing Mally sleep soundly in her crib. I miss spending time as a family. I miss life before Cancer.

Blood Cultures

So far so good, they are negative but they continue to watch them for another 24 hours.

Mal had a rough night and morning, we ended up giving her morphine to calm her down. They are not sure what is causing her to be so fussy, some people develop gastrointestinal sores from there mouth to there bottom and they can be pretty miserable so it could be that, we are playing a guessing game right now.

She has developed a splotchy rash all over which points to a viral infection which is much better than a bacterial infection.

Her fever spiked up this morning but has tapered off again. Hopefully it stays that way this time.

Fever

Mallory started feeling crummy last night around 8ish, I kept a close eye on her temperature all night. We have a forehead thermometer it typically reads 97.6 when she is feeling good and it slowly started climbing. She reached 99.4 during the night and stayed there, we kept her in bed with us, she refused to eat, and by morning she lost all of her color and could barely hold her head up.

So a quick phone call to the hospital to let them know we were on our way and we rushed out the door as soon as my Dad picked up Jillian.

When we got here they did her blood pressure, temperature, and pulse ox monitor. Her blood pressure was good, her temperature was 100, and her pulse was pretty high. They drew blood from both her lines and sent them off to do a culture to see if she has any bacterial infections. They also did a CBC and her numbers are super low, her hemoglobin is an 8.1 and her ANC (ability to fight infection) is at a 0. Her white blood count is super low as well, as to be expected after chemo.

Her temperature spiked to 102 within an hour and they started her on antibiotics, tylenol, and lots of fluids. We were admitted shortly after this.

The blood cultures take 12-24 hours to get back so in the mean time she gets antibiotics while we wait.

We will be here for at least 2 days or if the culture comes back positive 5 days or until her fever breaks.

She is also getting another blood transfusion to hopefully perk her up. She is sooooo pale, she has petecia really bad because she is so anemic, and she has slept pretty much all day. Her fever is at 99.9 the last time they checked.

I am really bummed about this because she was doing so AWESOME! if the cultures come back negative it could be caused by her ANC being at 0. They consider this severely neutropenic.

So we hope that the cultures come back negative and she gets better soon. Our poor punky :-(

Pictures from Cycle 1

I finally got around to uploading and resizing pictures. We had a GREAT 1st Cycle even though we were there for 6 days. Mallory did AMAZING, I was so pleased with all the nurses this time. They helped me through the night so that I did not have to get up with her every 2 hours to change her diaper. Jillian came to visit as well, she did AWESOME this time. I missed her like crazy so it was nice to see her bright smiling face.

We have to change her diapers with gloves on because of the chemotherapy.

Mallory and Jillian recieved bears for smiles. They send these to families who are battling cancer, and the GIRLS LOVED THEM (GO HERE for more information)

MALENTINES DAY

They spoiled the kids by bringing in puppy's! HOW FUN!

I love my bald kiddy, she's AMAZING! 

Poor girl had to be hooked up to so many stinking wires the whole time!

We bring pictures with us every time we are up at the hospital. This time I had her "Cancer, I'm gonna squash you like a bug" picture up. Everyone LOVED it and couldn't believe it was actually Mallory!

Everyday is Blessed

Everyday we get to see our beautiful girls sweet smiling faces we are blessed. Every giggle we are blessed. Every moment of everyday we are blessed.

Our next round of chemo starts March 1st. Another 6 day hospital stay, another 5 nights of Topotecan and Cytoxan. And after that another scan to see how it's working. But each of those days is another day I get to spend with Mallory, where we get to cuddle night and day, another chance at her having many many birthday's.

The rate of death of neuroblastoma in the 1960's was 0%, Now in 2012 (in Infants) has gone up to nearly 90% survival rate! So we are just counting on our Daughter being part of these 90% of children that fight to make it. So far she has done incredible, she is smiling, she has beautiful PINK rosey cheeks, she is so giggly, I am amazed. My daughter gives me strength. But no matter the outcome, I count my blessings because each day I get to spend with these girls is the best day of my life.

Home Sweet Home

When you've been away for almost 6 days the smell of a fresh clean house is AMAZING.

So many amazing cards, letters, and presents were waiting for us. All I can say is you all are INCREDIBLE! We will get through this but could not do it alone so the outpouring of support just makes me speechless.

Mallory has been jabbering up a storm, I was ready at 9:00 am to get OUT OF THERE. We get to spend 2 weeks at home and go in for Cycle 2! She will have 5 days of inpatient chemo again, and then a CT 2 weeks after that round. I've got my fingers, toes, and everything crossed that this will WORK!

Mallory is AMAZING! She is my buttercup and I can't wait for the day when we can put this all behind us. Thanks again everyone!

-Ashley