Tuesday, February 28, 2012
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.
Sunday, February 26, 2012
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.
Friday, February 24, 2012
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
4542 Kenowa Ave SW
Grandville, MI 49418
Thursday, February 23, 2012
Wednesday, February 22, 2012
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.
Tuesday, February 21, 2012
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.
Monday, February 20, 2012
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.
Sunday, February 19, 2012
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 :-(
Friday, February 17, 2012
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)
I love my bald kiddy, she's AMAZING!
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!
Thursday, February 16, 2012
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.
Wednesday, February 15, 2012
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!
Monday, February 13, 2012
She feels so crummy today, she was eating great this morning but it just has gotten worse as the day progresses. We were informed today that we could not be discharged if she was not eating they would have to supplement with TPN. So still hoping we are out of here on Wednesday but it's not looking likely and she still has tonight and tomorrow left on chemo.
I am surprised I even had time to write this Mallory will NOT let me put her down today. She just really needs me, and these hospital chairs SUCK, my butt hurts from sitting in it all day long.
Sunday, February 12, 2012
Cancer has given me a new perspective. A perspective I wish I could give to each and every one of you. I would never wish this upon anyone but I wish I could share some of the knowledge I have gained.
Perspective to me means no longer having absolute control, it means letting down my guard and allowing myself to learn from this terrible situation. It is no longer about thinking about walking in someone elses shoes, its about walking in them myself.
Perspective is when your child's first round of chemo doesn't work, and you go onto plan B, it gives us the perspective to not take our health or our children's health for granted.
Perspective is when you know the kid, 4 rooms down from you is fighting for his life, that he needs someone to die so that he can live.
Perspective is when the sweet girl you met in clinic is rubbing your daughters bald head and smiling about how much she thinks Mallory loves her (and trust me Mallory DOES love her) and knowing that this girl is fighting for her life as well. With a little bit of hair and a WHOLE LOT OF HEART!
Perspective is when you get a call from a Mother sharing her daughters struggle with cancer, listening to her weep about losing her baby. And knowing not a single word can be said to make her struggle any easier.
Perspective is accepting that you do not understand each individual struggles. Perspective does not hold a person back, it only makes them wiser.
Perspective has shown me that when I'm downstairs folding laundry and I come upstairs to see my 2 year old's beautiful crayon artwork all over my white counter tops that it doesn't matter, it is accepting the fact that she is 2 and in 10 years she won't be drawing all over everything.
Perspective isn't about feeling sorry for someone, it's not about letting other people's struggles consume you, it's about watching through the window, counting your blessings, and it's about making the road you walk a wiser, stronger, and more resilient journey.
So if you cry when you think about my daughter, know that this perspective only makes you a better person, because you haven't walked in our shoes but you yourself can be a stronger person because of it. So many of you have put forth so much effort to make this journey more bearable and less intense, Perspective to me means accepting help when I need it, when my children need it, and because of all of you I have gained the perspective to become an AMAZING person, to come out of this more alive, with a future planned and the perspective to help others like everyone has helped us.
Saturday, February 11, 2012
So far so good, Mallory didn't have any bad reactions. She fell asleep during the cytoxan.
She is hooked up to the oxygen censor, a blood pressure cuff, EKG leads, and fluids running 24/7. So needless to say it's really hard to move around with her, it's hard to change her diaper, and there are LOTS of cords for her to grab onto. We also get to wear gloves every time we change her diaper.
We had a REALLY great nurse last night, we have to change Mallory's diaper EVERY 2 hours so that the chemo doesn't sit on her skin for long periods of time but she ROCKED and changed almost every diaper for me (there was no way I could wake up every 2 hours on the dot to remember to do it). And with the tons and tons of fluids running through her she goes through diapers like crazy! Her kidney function looks great along with her urine output.
We were told that we should anticipate by the 3rd day for her to start feeling bad. Reduce in appetite, more lethargic, and for her to not be her happy bubbly self. :-(
I would like to say THANK YOU to everyone for helping us out, we have just had an out pouring of support and we couldn't do it without you all! Thanks for all the emails, the gifts, EVERYTHING, nothing has gone unnoticed, Ryan and I are constantly gushing over your cards. My girlfriend Erika is setting up a calender so that when we are here or at home you can sign up to help us if you'd like.
Jillian is coming up today, so while Ryan's mom gets lots of Mally cuddles we get to run around the hospital with our 2 year old. I am SO excited to spend some time with her finally!
Thursday, February 9, 2012
It means that it makes our daughter very sick.
It means no longer being selfish.
It means being away from our 2 year old.
It means spending more time in a hospital than at home.
It means having bad days.
It means having good days.
It means accepting things that we cannot change.
It means relying on others to get us through this.
It means having faith and keeping faith.
It means watching our daughter suffering.
It means waiting. Lots and lots of waiting.
It means being part of the oncology family.
It means fighting.
It means focusing all of our energy on our daughters healing.
It means that we have to take time outs.
It means that we have to have faith in her doctors.
It means crying.
It means laughing.
Cancer does not only affect our child, it affects our whole family. It affects our relationship as a couple. It affects our Jillian. It is something that we have accepted, we are ready in a moments notice to do anything for our daughter. It has become our life. As much as we try not to let it, it does. She is worth every penny, she is worth every tear, she is worth every moment. We planned for this baby girl, we planned on having her, and we will keep fighting everyday for her. To see another smile, get another cuddle, kiss her everyday., in the end all of the stress, the heartache, the anxiety, the sleepless nights, they are all worth it.
Wednesday, February 8, 2012
Wyoming MI, 49519
This is my wonderful Moms house. She has been taking primary care over Jillian while we have been in and out of the hospital, she has just STEPPED up to the plate so much for us. We couldn't get through this without her!
What this means is she still in the intermediate risk category and not the high risk.
The bad news is, we start a LONG LONG course of treatment.
We will be doing 8-12 cycles. Which means each cycle is 21 days long, we are admitted to Helen Devos for 5-6 days each cycle.
This is MONTHS and MONTHS of treatment. We will be doing a CT scan every 2 cycles and an MIBG every 4 cycles.
She will be receiving heavy doses of Cytoxan and Topotecan. These will be very hard on her, she will have to be hooked up to IV fluids the entire time we are in the hospital. She will be monitored the entire time. And we will be doing daily neupogen injections once we get home. And she will not feel well at all, it is a very very very hard chemo on anyone let alone an infant.
This will equal a lot of time away from Jillian.
This will equal tons of money for hospital expenses (not medical because Mallory is on Children's Special Health Care which takes care of her Cancer Related Care), for the gas to and from, for food and other basic necessities.
We are not asking for a hand out but if you can help in anyway our family sincerely appreciates it. I will be re posting "take them a meal" this is HUGE to us. We have a long road ahead of us the next 6 months at least, so if you can bring us something, get us gift cards for places at the hospital, or in anyway help us we need it right now. Grocery's for food for Jillian for when she is away from home. Small travel size supplies are wonderful as well, shampoo, conditioner, soap, toothpaste, toothbrushes, deodorant, disposable razors, etc. ANYTHING. Help with housework, anything, anything, anything!
I am STRESSING once again the importance of not being around our family if you are ill at this time, we cannot delay treatment due to Mallory getting sick. But we NEED help, so if you are well, have time please come help us. Mallory needs all of you, she needs us, and she needs you.
We are going to fight this, we are going to keep our chins up, we are going to get through this. It's just going to be crazy for awhile. I posted pictures from the day she was born, because this sweet baby HAS to see her 1st Birthday, she has to see many many many birthdays.
So we can celebrate just as much as the day she was born!
Tuesday, February 7, 2012
Today I am nauseous. Sick to my stomach. We are playing the waiting game once again.
Dear Lord, please HEAR my prayers. Please look over my baby, please keep her safe, please let her live the rest of her life. You gave this child to me for a reason, and I just need her. Please heal her. I am having a hard time keeping faith right now, please heal this as well. Amen.
There was no news on the MNYC amplification yet again today. We knew that it would be later in the week, I just held out some hope that we would get some answers so we can start looking forward. I am having a hard time today. I sat on the kitchen floor Jillian cuddled up in my lap and Mallory sitting in her bouncer and just cried and cried and cried. I smelled their hair, I touched their skin, I just cried.
I know that I HAVE to stay positive, that I NEED TO BE STRONG. I have faith that my Malibu is a fighter, but I am having a hard time keeping my mind focused on the goal right now and that's because there is so much unknown. Please let this tumor be no different that the last one, please let this chemo work.
She just amazes me, as I cried and cried and cried, she giggled and giggled and giggled. I wish I knew what babies were thinking. I just cannot lose her. I can't. I would trade places with her in a heartbeat.
Life doesn't go the way you plan it, it just happens, there is a reason for every season. Right now I am struggling, struggling so much. The last 2 months have been so slow, every day it just drags, every phone call puts my stomach in knots, every little thing bogs me down. I keep telling myself we will all be ok, we will come out of this stronger than ever. We already have come so far. Now we just wait for the rest of the puzzle to come together, and please let it have every single piece.
Ryan and the girls are sleeping, and yep I am sitting here eating hot dog buns. I am pretty much as awesome as it gets.
I will probably regret drinking by the time 8 am rolls around.
I tried to lay down, but I have sleep induced anxiety, pretty much my bun of messy hair hits the pillow and every possible situation runs through my head. Cancer is not only consuming my child but me to. I am physically losing my hair, it looks like chubahka (however you spell it) is living in my bathroom currently. So when you pick stray hairs out of Mallory's mouth assume they are from me because they are. My house is covered in hair and I can't blame my cat this time.
I can't believe it's been over 2 months since Mallory has been diagnosed, seriously where did 2 months go? Ever since this past weekend she has laid down at EXACTLY 11 every night, she's been eating 4-6 ounces, and is just doing great! She is back to normal baby mode again. We have scheduled to be admitted again friday for Chemo, they should have her pathology results back by then and a game plan ready so we are just being put down for that day. We have nothing to go by except this.
This week is dedicated to vegging out, cuddling up, and answering non stop phone calls in between. After several phone calls today I got prescriptions refilled, questions answered and insurance information filled out. Monday is done (CHECK!), we should hear something tomorrow about an admitting time and possibly pathology results, but most likely Thursday for those is what they told me. They have to grow the tumor in a petri dish and do tests on it which is why it takes so long. If only they knew how to cure the tumor instead of growing it would be nice.
I did forget to mention that we picked up Jillian yesterday and I was pleasantly surprised to hear her say "Lets GO! READY". She loves staying with Nana and Papa but she was ready to come home. She JUST turned 2 on December 30th so she is JUST understanding things a little bit more, so it freaks me out to leave my Jillian with anyone for long periods of time because I am terrified of her not remembering what "home" really is. (Not that my parents don't do an AMAZING job, because I totally always get the same kid back that I left with them. I am pretty sure she learns a few new words every time she's there too which is always a PLUS. Our new favorite "STOP THAT"). This is not the case, she is begging me for attention 24/7, I love the extra snuggles, the kissy lips, and the non stop chatter. I miss this when we are in the hospital, it breaks my heart. It's also hard to bring her up there, she is a LOT of work, we are constantly saying "no", and it just isn't fair for her because it isn't any fun. She deserves fun, she deserves normal, she just deserves so much and right now so much of our time is dedicated to Mallory's care that I try not to lose sight of this. Our goal is to have a well rounded child, with a stable home, great parents, and an all around FUN childhood. And the fun part is only possible if we keep her "innocent" as long as possible. We are trying so hard to make the best out of this.
So tonight was good, I did cry, but I laughed, I laughed a lot and it felt GREAT! I climbed into bed, touched Mallory's head and decided I couldn't sleep but now that I ate my hot dog buns I think it's time to try again.
Good Night All!! :-) - Ashley
Monday, February 6, 2012
Sunday, February 5, 2012
Her hemoglobin was 8.2 three days ago and has remained there since then. I had to fight them to get a CBC done again. Since we are dealing with surgery and not the oncology team they wanted to run a " reticulocyte" count to see if her bone marrow was regenerating her blood cells fast enough. And it's not. If I would have dealt with the oncology doctor we could have discussed her blood counts and had this taken care of. Now we get to sit here till 7 while she gets a transfusion.
I wanted her to get one, being anemic and a baby = double trouble. She gets cranky, lethargic, and pale. This equals miserable for EVERYONE in our house. So I am glad she's getting it, I'm just not happy with how many hoops I had to jump to get it done. I realize we are not the only ones on this floor but we had to get permission from surgery, then they contacted oncology, then they got back to surgery, finally got the order in, ran the CBC, then the reticulocyte count, and then ordered blood. 5 hours later. We could have skipped a GIANT step had we not been admitted under surgery.
We will NEVER be admitted under surgery again, even if I have to be here several hours before we get admitted. We could have addressed this issue yesterday and been home earlier today.
I am hoping that we get some results early next week, I am very very fearful for Miss Mallory because she didn't respond to this treatment. We haven't been able to talk to a doctor so we don't know if this pushes her to a stage 4 or stage 4S neuroblastoma. We are fearful that the NMYC is going to come back amplified which takes her from a 90% survival rate to under 60% and she would have a much higher chance of relapse if this is the case. High amplified stage 4 Neuroblastoma has very low survival rates, high chances of relapse and are very very hard to treat. We can only pray that they were correct that she has the Non Amplified Neuroblastoma. We are also fearful of the ALK gene they are testing for, if this is the case it is a genetic marker that one of us carries. If it is the ALK type of Neuroblastoma they have a specific treatment for it, but Jillian and any other kids we might have, have an increased risk of having Neuroblastoma.
Talk about a huge heavy weight on our shoulders right now. My mind is weighing every possible outcome right now and no matter what it's going to be a tough road. I keep kissing her little bald round noggin and all I can think about is not feeling the warmth of cuddling up to her, not seeing her smile, not hearing her laugh. I know I should try to steer my head far away from these thoughts, that I shouldn't think this way, I haven't given up, I won't give up but they are still there. My heart still aches.
I am going to try to stay as positive as possible, allowing myself to have bad days and good days. This is just tough, it's unfair, its brutal, its ugly, Cancer is UGLY. Mallory's 1st year is going to consist of being in and out of the hospital. Instead of looking forward to her rolling over all the time, we get to worry about her tangling up all the cords around her, instead of looking forward to her crawling we have to worry about her pulling her broviac out of her chest, instead of looking forward to her walking we get to be worried about chasing her around with an IV pole. It's crap.
We're getting married in July, instead of looking forward to our wedding I am hoping Mallory will be done with Chemo by then, all I care about is her being better, her scans coming back clean, her being back to normal. I could care less about our wedding, we arn't going to have the time, the money, or the energy to plan anything. We most likely will not be going on a Honeymoon because we're going to be in Cancer mode still and I can't spend a week away from Mallory while she goes through this. I have to be in control of the things I can be. I don't want to designate tasks and stress over someone getting stuff done for me. I just can't deal with any of it, I can't think about it. I am very fortunate we booked the hall and church before Mallory got sick or else that would have never gotten done. I picked out my dress 2 days before Mallory was diagnosed, and Ry's Mom found the perfect dresses for Jillian and Mallory. So I have a few things done and that will just have to do. All I want that day is to walk down the aisle, marry my Best Friend, and have both of my daughters there to share in the celebration with us.
I honestly want to cancel the wedding, go to justice of the peace, get it done so I don't have ANY more stress right now. But we've already put deposits down that cannot be refunded. So it is what it is.
I am holding out SUCH hope for a Miracle, for a chemotherapy regimen that works for our princess pie. Thank you Cancer for the pile of shit you have thrown at us, it's making life unbearable some days. I'm sure this week is going to be FULL of those days too. Waiting is the worst part. Knowing that the cancer could be spreading as I write this post is nauseating.
Saturday, February 4, 2012
If you would have told me when I was 6 months pregnant that I was going to deliver a baby who we would later find out had cancer, it wouldn't have changed anything. I wouldn't have abandoned her, I wouldn't have changed a single thing.
She fights for her life everyday, we watch her go through this and yet she prevails, she is stronger than we are.
If you were in our situation you could to. You do what you have to do to keep moving forward. I said there was NO way I could change her dressings (on her broviac), end caps, or give her daily medication and guess what I do. I actually consider myself to be better than most of the RN's here at doing them. I could probably do it blindfolded. (Not that I would try lol).
I also said I could NEVER give her shots, NO WAY, absolutely not. When our nurse Julie said "do you want me to do it and you to watch", I told her to hand me that needle and walk me through it. And I did it. I've given her a shot 5 different times now, not enjoying them at all but I do it. I do it because it will help her, it's just one more step we have to do to get her to recovery.
This journey has had the lowest of lows and the highest of highs. I've never cried harder, but I've never laughed harder either. Seeing a 2 year old ask a doctor if "they want a drink from her tubbies" and to "tuck them in her bra when they are done" pretty much is the funniest thing on the planet.
This is life for these kids, they are used to it, its what they know. They are little miracles, if you had to go down this road you would do the same thing we do. You take it minute by minute and day by day because it's the only way you can get through it. You cry, you laugh, you lose faith, you find faith, and you repeat these things everyday. It's hard to keep faith when you think about all these cute bald kids running all around on this floor, but then you talk to them, you know them by name and they give you faith back. Because they are being given poison to keep them alive and they smile through it so all of us parents keep going because of THEM.
We are staying 1 more night, voluntarily. We could have gone home, but at home we don't have the option of morphine if she needs it, we don't have constant monitoring, she is still not taking fluids great and she still hasn't gone #2. So I think we're staying more for me than for her but I know I wouldn't be able to sleep well at night, I would question every little whimper, and I wouldn't have an RN answering ALL of my questions, I would be so worried the whole time. Seriously they did open abdominal surgery 2 days ago, so I think I'm a little freaked out about bringing her home. Last time we were here for a week after her surgery. Sure she's smiling and being cute, but I think 1 more night will make me a lot more comfortable going home. So we get to vedge out 1 more night here and I'm ok with that.
Friday, February 3, 2012
One of the kids 5 doors down from us has a sign on his door.
No doctors with bad news
No family without presents
No nurses with chemo
and that he needed a gift cards to Qdoba and Track Phone gift cards.
So naturally we had to give him a gift card to Qdoba, so we slipped a gift card and a little note saying that we LOVED his sign, that we hoped his belly would be full of good food soon.
So a few hours later a nurse shows up with tupperware full of food for dinner for us! So naturally I send him a bag full of Mama Wiersma cookies. (She brought me a WHOLE container of them for comfort food) I told him that obviously I did not bake them because Microwaves don't make the greatest cookies, and since Mallory couldn't eat them she certainty enjoyed the smell and that we ate some for her :-p
So this place may suck but at least were having a little bit of fun.
Thursday, February 2, 2012
Yup we got shitty news today, its all over her liver. The chemo didn't work it's growing despite our hopes and prayers.
We are thankful God watched over her through another surgery, that we will hopefully have some answers soon that will get her through this.
They sent a piece of the tumor to Philadelphia to see if there is the ALK gene within her neuroblastoma that could potentially make it easier to treat. We have to read further into this, we just signed the paper and said GO!
Whatever it takes.
Biopsy results we should have by mid next week, right now we focus on Mallory healing. On loving her up, cuddling, and kissing her.
The title of this blog is because a lot of you don't know what to say to us. We've been there with other families and there isn't much you can say except what you've been saying. Please don't stop, you may feel like your being obnoxious but your absolutely NOT! We need it right now.
If you come over we DON'T have to talk about Mal's cancer unless you want to. I can laugh, I may cry but I have accepted this. It's ok. I want to hear about your kids goofy stories, how naughty they were and how they drive you up the wall. Don't feel like you can't complain because Mal is sick. She is sick, she has cancer, but she can drive me crazy too. (Trust me 128 days of waking up every 2 hours would drive you crazy to regardless if your kid is sick or not).
I want to be clear about this because I need my friends and family to understand moping just because you feel sorry for us doesn't help us. So crack a joke, give us a hug, feel free to cry but don't just mope because that's what you think we expect. We don't cry all day long, sure we have our bad days but we have a lot of good days too. I want to enjoy Mallory through this too, and sitting around feeling sorry for her and ourselves (not saying there are not days because there are) 24/7 doesn't fix the situation, it doesn't cure her cancer so we choose to smile, laugh, and enjoy every single moment we can. Of course we cry, we have days where this just doesn't make sense, but it is far from everyday.
Mallory has cancer but this does NOT make her any different than your babies, she rolls over, giggles, sucks her thumb, and attempts to hold her bottle and she smiles all the time!
She is in pain this time, a lot more pain but she's pushing forward. A touch more morphine and she should be doing better tomorrow. She won't eat anything besides glucose water but that's totally fine for now.
Just stop say a prayer for my punky that she feels better soon and we get results quickly.
Mallory is out of surgery and doing great. Poor girl has the saddest whimper. Everything went well, there saw a lot of cancer on her liver. Very little spillage from biopsying the tumor. We have no other information besides this currently. We will be staying the night for sure.
What the $%#*? (I censored this time or spectrum health deems my language inappropriate to view)
Mallory is in surgery, another open abdominal procedure. It is pretty guaranteed that there will be spilling of the tumor which can cause more cancer growth from just doing the biopsy.
The histology could be worse than originally thought.
They are pretty positive that its growing from not responding to treatment and not dying. Majority of tumors shrink or remain the same size and do not grow.
So pretty much none of this is good.
So thankful my mom is here to support Mally and us. Although this is not as complicated as the last surgery it is still huge. This could potentially change the game, I almost feel like this is bigger than the last one. Our sweet Mallory is fighting a horrible cancer and we could not get through it without my parents. They take the girls on a momennts notice, they take them without a single complaint, I can only hope to be the same way with my kids. They have Jillian 2 days minimum a week, plus my mom comes over almost everyday to help me.
I don't know how to ask for help. I just can't, and my wonderful mom calls me and just says "I'm on my way". I am so blessed to have her, I breathe a big sigh when I know she's coming.
I just wish and wish and. Wish wish wish wish wish wish wish this could be over. That Mallory would be fine, I fear stage 4, I fear high n-myc amplification, I fear the pain she has to suffer even more now, I fear her not getting to her first birthday, I fear losing her.
The just took Maui (Mallory) back for surgery. They opted to do open abdominal surgery, so we are probably going to be here through the weekend.
The doctors also told us that there is virtually no chance that the tumor grew because it was dying and swelling. Most likely it grew because it is unresponsive to the current chemo regiment that Mallory is on.
Prayers are welcome and encouraged.
I've been thinking a lot lately about the up's and down's of being a parent. My pregnancy with Jillian, text book perfect (minus some slight sciatic) and Mallory's was a train wreck from 30 weeks on. In the hospital out of the hospital, I had tons of preterm contractions with her, I also had horrible rib pain when I was pregnant with her. I remember asking them why they wouldn't do an ultrasound to check on the baby? They kept telling me that everything on the monitor looked fine, dosed me up with some medications to stop my contractions and sent me home. My MOM radar was going off, and I didn't even know it. But at 39 weeks and 4 days Mallory joined our family, a chubby 7lb 10ounce baby with the most adorable chubby cheeks and buddah belly.
Then 2 weeks later I had the most awful Galbladder attack EVER, they sent an ambulance. If you knew me, you'd know it takes a LOT for me to say yes to getting an ambulance ride. I didn't know what was wrong, I was on the floor bawling, grabbing my stomach, screaming. When we got to the hospital the pain had stopped, they did an ultrasound and I had gallstones and an infection in my pancreas. I didn't know it but when I was pregnant I was having these pains, this is what caused so much discomfort in my rib cage.
2 weeks before Mal's pediatrician found the tumor, we saw another doctor. Said she had reflux and sent us home, My mom radar went off there also.
My point is to LISTEN to yourself, listen to your instincts, and FIGHT for your child. I didn't think I'd be one of those crazy Mom's who's ready to storm up to the hospital and demand answers. But this is MY child, and I will NOT sit back and take ANY chances with her.
So I've met many many parents through being a parent myself. And you totally don't understand it until you are one yourself. But you surround yourself with these Mom's. We all do things differently, we all make different decisions because our children are different. There are many many times when I don't agree with someone's parenting style but I accept that they are doing what they believe is best for there child.
Jillian is totally unlike most 2 year old's I've seen, so I raise my voice and she listen's, she doesn't do anything intentionally naughty (MOST OF THE TIME), and she just is DIFFERENT. I accept this, but I also accept seeing my best friends having to discipline there children, I accept that they have different methods. No one is WRONG at this.
I have a lot of friends that are currently pregnant, and the only advice I have is educate yourself but don't stress over it. If you have to have a c-section who cares, if you get an epidural who cares, and if you do it all natural who cares. Keep your eye on that prize, that sweet baby, and the only thing that SHOULD matter is if it's healthy. If it takes a c-section that that's fine, if you can't manage the pain you tell them you need an epidural STAT, and if you just change your mind after saying "no medication" its FINE! No one will judge you, it doesn't make you less of a Mom. You baked that baby, and trust me it's always easy!
I am a Mom of 2 girls, I thought my first one was for SURE going to be a boy, I convinced myself of it, but when we found out that it was a girl. I was delighted, amazed, and totally taken back. Honestly who cares if you have a boy or a girl? It shouldn't matter, you are given what you given because God KNOWS that you will be the best possible parent for that child regardless of it's gender.
How was I going to take care of a little girl? I think it's awkward playing barbies with kids, and doing hair (for being a girl I am NO good at it), and I don't have any obsessions with being fashionable. But I adapt, my little girl doesn't even like baby dolls that much, she likes EVERYTHING. I had convinced myself that I was going to live in a pink dollie for the next 18 years. Totally not the case. I even do her hair everyday, some days we stay in our pajama's, somedays we get dressed. There's no right or wrong. I made my own baby food, I do not frown upon a Mom who totes around a jar of baby food. I do it because honestly I'm cheap and I enjoy making it, although I did go buy some Gerber baby foods for Mallory last night so that I could bring them to the hospital with me :-p But who CARES is my point.
Your kids can TOTALLY drive you crazy, sometimes you yell when you don't mean to, sometimes they do things that downright push you to the edge. And we all make mistakes, I've swatted Jillian's behind because I've gotten so frustrated, It was a mistake (I do not frown upon spanking, I try to use it as a safety punishment for the most part so I get my point across) she didn't deserve that punishment for the crime. I accepted it, learned from it and moved on. I am not perfect, I am not super Mom, I don't have all the answers. I am just doing the best that I can do.
And that is ALL that matters. Be proud of the kid you were given regardless, because life is precious. Somethings you can't plan for, kid's totally have there own plan in there heads, so accept it. Accept that every person is different, you can try to prepare yourself for EVERYTHING but sometimes it's just not going to work that way. Do not judge your friends for things that they, accept that they are doing what they think is best.
Today I am bringing my daughter for a biopsy of a tumor that in spite of treatment is growing, This isn't what we picked, it's the cards we've been dealt. So we're going to play these cards, we accept it, we keep moving on. That's life and it's all you can do.
Wednesday, February 1, 2012
Mallory will be having a biopsy tomorrow morning. She will be under general anesthetic and while they have her under they will be replacing her broviac as well.
They tried to tell me that they would let me know later today or tomorrow about what he said. And I would NOT accept this. That I HAD to know NOW that I would NOT wait for an answer. That they HAD to find me SOMEONE that could give me some answers. And I got a call back 10 minutes later. BITCH BONE WORKS AFTER ALL!!!
I am 100% for advocating for my child, I will not accept "ok" or "call back later". My child has a cancerous tumor inside her that is growing, I will NOT accept a waiting period. Time is NOT on her side, Neuroblastoma is a fast moving cancer, and we need to kill it as fast as we can so that Mallory can keep on living. So that we can just get back to worrying about her rolling over, or when she starts crawling, or when she starts talking. Instead these things are on the back burner, as long as she lives 1 more day thats all we care about right now.
Still waiting for our call about the biopsy this morning. The problem with this adrenal tumor is it is infused the inferior vena cava making a resection very tricky. Not impossible but very tricky. If she looses her 2nd adrenal she would also be on medications for the rest of her life, I'm pretty sure if it comes down to it, I'll take that over the chance that the cancer spreads.
I think the crappiest thing about this all is how naive we were. This happens to "other" families, Not us. Definitely NOT us. It still seems like a nightmare, that's partly because it is.
I thought life would go back to "normal" but that's not the case. I have appointments every Monday and Thursday, but some are 2 hours, some are 8 hours long. It just depends. Sometimes we go in on Wednesdays, sometimes we have a surprise ER trip. So I cannot plan anything out, I can only take the girls a few select places that I know are clean. It just gets old, when does life turn back to normal?
We continue to pray (don't worry I asked God to forgive me for all of my horrible language yesterday). I have faith, I know God has a plan for us, I know that he is working even though we can't see it.
It just seems like we go 1 step forward, 2 steps back. We're pretty much stuck in limbo. I can't get anything done because I am too busy feeling sorry for my child, I've let everything fall apart around me. I'm not sure where I find strength, I'm not sure how I find motivation. I just take it minute by minute and that's the ONLY thing keeping me a float right now. I put on a brave face for everyone, I smile, I laugh, but inside I am one giant pile of mush.
This is MY baby, the one that I gave birth to. The one that showed us from the beginning that she was "special", that she had a total different attitude, a different personality, a different EVERYTHING. She is strong, she is sweet, she is amazing. And I am totally giving her permission to sleep in our bed for the next 18 years if she wants. She just has to keep on fighting, she has to make it to the next day, she has to see many many birthdays.
When I am ready to give up, throw in the towel, that sweet little smirk of her's comes out. I am going to keep moving on because I NEED that smile. I need her to someday hug me, someday give me kisses, she teaches me how to be a better person, a better mother, and a better wifestobe. Shes taught me so much already, that little girl is a rock star, and we will fight every minute of everyday until she is better.