Hi All,
Sorry for the delayed updates, but we’ve been on the ICU for three days now. Penelope got a really bad infection – from what, we don’t know. But, her fever spiked and wouldn’t go away. Her blood counts were horrible, white cells were at about 20% of their normal level, so she was literally defenseless to fight off the infection. They had to put her on a Cpap breathing aparratus that forced both air and helium into her lungs. Apparently, since helium is lighter than air it can get into the small spaces of her lungs and since Oxygen attaches to helium, it would help inflate her collapsed lung so that we could work towards her breathing on her own. They had that going for two days straight, then about a half a day of just forced air – now she’s just back on regular non-pressurized oxygen.
It seems like every time we take one step forward we go three steps back. We’re finishing up day 19 in a row here at the hospital – man this has been a long, tough road for us all so far.
We did get ‘new’s about her tumor. I don’t want to say good news, ’cause any time I say that, something horrible happens right afterward. So, in the spirit of superstition, we’ll just say news today. 
Her tumors aren’t the ‘amplified’ kind, so it’s highly treatable and her prognosis just went way up. So, that’s something we can all be glad about. But we have a really long road ahead – lots of chemo, more surgery and I’m sure, more unexpected fun stuff. Nonetheless, we’re fighting on. The three of us are sticking to together and we’ll battle this out. We don’t care what it takes, we’re going to win! That much I can assure you – Penelope is the toughest little girl I’ve ever encountered. If she wasn’t, I don’t know how good her prognosis would really be. Little one’s like Penelope don’t know how to be pessimistic, so they just fight – they don’t know that other options even exist. I guarantee you she’s gone through more than many adults could handle already and we’ve got months and months and months of this to go.
I don’t want to get too far into this at the moment, but I do have to mention that the only reason we’re on the ICU right now is because of a bit of neglect on the part of the staff. We’d been moved from Oncology to the Med/Surg unit because of Penelope’s respiratory infection. Even though Carina kept telling the staff that she thought Penelope was starting to get a fever no one took her seriously, or informed the doctor or took any further steps. There were a few other mess ups as well as far as protocol of treatment went…if those things hadn’t happened it’s quite likely that we wouldn’t be here in the terribly uncomfortable ICU. I don’t want to bash the hospital though, overall our care has been great. But the mistakes of a few can sure mess things up as a whole….
It looks like Penelope’s next round of chemo might get delayed a bit so that she can heal a bit more and even possibly have her first birthday at home instead of in the hospital. Since her bone marrow also has cancer, her immune system and defenses are just beat up. She was supposed to get her second round of chemo starting on the 28th. But it looks like we won’t be out of here ’til Friday or Saturday, so that would only give her one week at home, then back in for another 3-5 days. We’re not going to push it too far out, but a few extra days sure wouldn’t hurt.
She still hasn’t gained any additional leg movement. She hasn’t smiled in two weeks either. I can’t wait for that to change. I really miss my happy little girl. It hurts to see her just lay there with that horrible uncomfortable grimace on her face. My poor baby.
I’ll let you all know how things are going as often as I can. For some reason it doesn’t matter if Carina and I get a good 6 hours of sleep, you still feel absolutely exhausted. Especially Carina – she’s such a champion Mom. She hasn’t left Penelope’s side once since we’ve been here. No matter how much I try to get her to just take a break she’s not going anywhere. When her fever spikes, it’s Carina with cold wash clothes cooling down the baby. When she needs meds, the nurses give it to Carina to give to her. It doesn’t matter how little she’s had to eat, or sleep, or think! She just keeps ‘Moming’, all day and night. Penelope and I are both very lucky to have her.
On that note, it’s good to point out something else. Carina has like this 6th sense or special Mom bond with Penelope. She just knows stuff. But, her intuition isn’t taken very seriously most of the time. She says something, they brush it off, then all hell breaks loose. Now I’ve taken over the roll of the enforcer – you have to be assertive in a setting like this. Otherwise, there’s too many chiefs and not enough Indians…and you end up on the ICU. So, Mom says what she thinks and I insure it gets checked out. Sometimes that’s just the way you’ve got to roll. Faith in others only gets you so far…again, like up to the ICU. So Dr. Mom and Dad the Enforcer are going to make sure that things keep moving in the right direction, which is forward and towards the exit door!
Best
Aaron
{ 22 comments… read them below or add one }
Aaron & Carina – I am so very sorry to hear you are in the NICU and that there is a possibility it could have been prevented. Sometimes I believe medical personnel brush off Motherly instincts because they figure they have all the education and they deal with this everyday, but then God pulls a fast one and puts them back in their place and lets them know that he is in charge. I am very glad that Aaron you are willing to play the “enforcer” roll – don’t let them even for a second brush off anything you or Carina feels or knows – this is your little baby girl – the most precious thing in the world to you and she is most important no matter what their case load. I pray Penelope gets to spend her first birthday at home. Seeing her drinking from a bottle was wonderful to see, but seeing her on the cpap machine just breaks my heart. I am so thankful the cancer seems more treatable now and that her prognonsis jumped sky high. I pray, one day, I get to meet little Penelope and pray that the news coverage continues to get the word out. Blessings to you both – you three are in my prayers daily!!!!!!!!!!
We would love more than anything to meet you some day and for you to see the happy little girl we have raised until this…smiling and happy. Thank you for all of your continued support!
Carina
Aaron, Carina, and my sweet little P…
Thank you so much for the update… Of course I already knew Carina was “Super Mom”… You guys hang in there, we’re going to beat this… You guys focus on that sweet angel and all your friends will help with everything else… I truly hope she can have her first birthday at home, and I hope I can see her on that day cause I have a special something for her… I even hope she can make it to the benefit show in her honor
… Okay well that was to be funny, but you know what I mean… I love you guys and keep having faith… She is one tough cookie and is going to keep fighting… Talk to you soon… XOXOXOXOXO
Hey Ang,
understandably though I’m sure. Thank you for your kind words and support…now get back to your school work! 
Of course you can come on her birthday if she is out…but everyone is hand gel and sick free! lol I am all sketched about her now
Carina
Carina & Aaron just want you to know how very proud we all are of the both of you. To see you pulling together into this awesome & amazing fighting machine & little miss Penny just showing you the way. The Three Muskateers. I love you kids so much and the prayers keep coming for Penny & for the both of you. Love You all the way to GOD XOXOXOXOXOXOXOX
Thank you Auntie Carol…we love you too!
I’m so glad Carina is such a “SuperMom.” I just feel so darned guilty for not being there for her and Jason when they were younger, now that I know how it has affected them. I am so, so sorry. But now is not the time for all that. She is right to keep on the staff when she knows something isn’t right with Penny. She only has one patient to focus on, where as the nurses have several at a time. Keep up the good work! I’ll try to come up soon! I really DO love you!
Aaron & Carina,
I am a friend if Angela. She told me about your little girl. I am so sorry that you are living this nightmare!
My prayer is that you get through this with a stronger faith and trust in God. God gave you Penny for a reason and I trust that God has you at the forefront of His heart.
Know that there is another person praying for you and longing to hear the continued news of Penny’s progress and recovery.
~Julia
Hi Carina and Aaron,
I just read through your entire blog,
let me tell you first of all that Aaron being the enforcer is just AWESOME!!!!
I know very well about doctors taking us moms not seriously at all, I had my horrible examples as well, with the birth of my now 6 and 4 yr olds, my uterus was rupturing, I was screaming like crazy, I KNEW something was wrind, they brished me off as I was being a BIG BABY, 12 hours later after making my mind up that I was going to get noticed, I screamed at the top of my lungs for 2 1/2 hrs straight, til they decided to do a c-section to shut me up, guess what? my uterus had ruptured 4 cm already, the second child, same thing, it ruptured 3 cm
So I completely applaud you for making sure you let Aaron know what you think and feel, and for Aaron “enforcing” it.
As I said before, I just read through the entire blog, I am making a post on my blogs to help bring awarness to Penny’s situation. As soon as I am done I will leave the link on the mckliny and I will tweet and facebook away aas well.
I wish you all the best outcome in the near future, as a mom of 4 preemies ans months of NICU Carina sweetie, you need sleep, and though it might sound like no one understands you because you don’t want to leave yourbaby, take it from me, I learned the hard way and collapsed in the NICU. make sure you take care of your body, because if you are not healthy, not only can you not be with Penny, but you can not take care of her.
HUGS!!!!!!!!!!!!!!!!!!!!
I am continuing to pray every night for little Penny. As a Mother I can only imagine what you are going through. I truly believe that God looks out for our little ones and He will bring her through this. A little boy from the preschool I work in was diagnosed a little under a year ago with stage 4 NB. He only had a 30% chance and he is winning his fight against this disease! Here is his FB group if you want to read about him. http://www.facebook.com/group.php?gid=92990071642&ref=ts
Your love, strength and courage are wonderful examples of what great parents should be. You and your little girl have really touched my heart and I have made it my mission to help your family as much as I can. I have posted updates on my blogs and am continually asking for prayers and donations for you and your family. My 6 month old daughter and I pray for Penny before every naptime, and I am continually praying for all of you throughout the day. God will get you through this. I can’t wait to hear when Penelope is home well and cancer-free. That day WILL come.
Stay strong through this hospital stay. Unfortunately you do have to stay on top of every little thing that goes on in the hospital. As you’ve learned, take nothing for granted. Don’t assume that they know what needs to be done and are doing it. I have had loved ones experience hospital mistakes. It seems like you guys have a really great plan with absolutely necessary teamwork. Good for you, again!
God bless both of you and Penelope,
Kristina
Hey Carina, thank you so much for taking the time out of this fight to update everyone. I look forward to hearing how she’s doing. And I think I end up teary eyed and sniffly every time. We might be in MN but we’re thinking about you everyday. Seriously.
I’m excited because Blue Star Butterflies has already made $50 this month, and we’re only half way through. I know it’s not a lot, but I think it’s getting the word out through Etsy.Com. At the end of the month I will paypal all the proceeds to pennies for Penny.
I don’t know if you remember but Penny is my mom’s name. And I still watch Criminal Minds and think of your cutie pie every time.
If I wanted to send something your way, where should I send it?
Much love,
Krishell
Hey Aaron and Carina!
We are praying for you guys! I just wish we lived closer so I could do more for you guys. I am hoping to mail Penelopes birthday present today or tomorrow from us! Your lil girl is a fighter and she is so lucky to have a head strong momma and daddy who know whats right for her!! Us mothers just know them kind of things!!
Carina,
I don’t know if you remember us… my 9 year old daughter, Isabella, was admitted with appendicitis the same day as Penelope. She made her a card and painted a wooden giraffe for her on our last day there. Your family has touched us in so many ways, you are in our thoughts daily. Our Girl Scout troop made Penelope some ‘get well soon’ cards and we will be making a donation on behalf of the troop. Your little angel is such a trooper and an inspiration to us all. Thank you for sharing your story. We will continue to follow your blog and look forward to the day that she is cancer free!! If there is anything we can do, let us know. We want to help, we’re just not sure how.
Adriana Hobson
I have been following your lives since I came across Penny’s story a couple weeks ago and every morning and every night I’m on her looking for updates. You are amazing parents and your little girl is one tough cookie. I know there are many stories for many parents in the same boat as you and I could not ever begin to know your pain or frustration, but what I do know after managing a chronic illness for 25 years I know the feeling when doctors think they know best and really only they make things worse. Good for you guys for taking charge, because really that bond between mother and child is something beyond this world. Your story has touched my heart and everyday I come to your site to check on you all. I know I don’t know you or your family, but I feel like I do. I look forward to more positive updates and I’ll keep spreading there word around Los Angeles, and you guys keep fighting the good fight…don’t let anyone ever second guess you. Much love and many good thoughts!
The three of you make a wonderful team. I am thinking about you always and praying for you and your little angel every night.
Thank you for taking the time for these updates. All of you are in our thoughts and hearts and hope, in spite of the hospital’s “care”, that you ALL have a long and happy life ahead of you! Penny seems, as you say, a fighter. –Treva [I am married to Aaron's brother, Ben Michael]
Aaron & Carina,
I’m one of the Okies, Benny’s cousin, and we are praying for little Penelope and for the two of you also. Aaron it’s great that you’re going to be the enforcer because it sounds like that’s what Penelope needs right now. Nobody know a baby like their mama. I had a doctor one time tell me that his wife said listen to the mamas, they know their baby. I’m so happy for you that you got some “news” and that her prognosis got so much better. Spending her 1st birthday at home will be great for all of you, I hope it happens. Hang in there and we’ll keep praying
Love,
Shelley
Hi Carina and Aaron,
I spoke with my mom last night and she gave my mom a run down and seems very positive. i just have to tell you that whatever Aaron’s career path is it should be in writing, the words are clear, it’s easy to understand and so awesome. Carina my dad always says that a womans intuition is so important and you should talk to my mom about that she knows when something is up!! Anyhow I love you guys and can’t wait to see you and hopefully can see Penny for her 1st b-day, give her a kiss from us. Be strong and there are so many people on your side!! take care xoxoxo
I have been waiting to hear anything and am glad that things might be going into the right direction
Katie
Yeah it will be a hard long road, but the lessons learned will be memorable and beneficial. Aaron and Carina you, are both fighters from the heart and you care so much. That’s what makes the fight so difficult. But Penny has got your genes and fighting spirit flows in her blood. Staying positive is hard and being hopeful through negligence is challenging. Keep the nurses and doctors on their toes. we all can be mechanical at our jobs unfortunately. But it is good to hear that there is a better prognosis.
Carina and Aaron,
We are friends of Nancy and Richard, and our heart and prayers go out to all of you!
There are no words I can think of to tell you how much we feel for the three of you – only know that God’s love is all around you, and thank you for all the updates of your precious little baby girl.
Love, Sherilyn and Terry
So glad to hear the “news” (won’t say good for Aarons superstition) I want to know if there is ANYTHING I acn do!! I am here on th side lines feeling helpless… Unimaginable how you must be feeling… Something deep in my soul tells me this will all be o.k. though and Carina has mom-tuition and my aunt-tuition has me filled with hope… Love you guys all & stay strong…