Family Updates

Things have once again gone from bad to worse.  Penelope ‘crashed’ while in the ICU, she’s been intubated and is on life support.  She’ll most likely stay that way for a few days while they do more tests.  I’ll post more info when I have it.

Best

Aaron

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I don’t know where to start, what to say – or what to do for that matter!  Well, let me start with this – Penelope is a champion of the world!  I can’t imagine going through what she has and then still smiling  when her Daddy comes to ‘get her’ with fingers outstretched.  That hasn’t happened since we were first admitted, but it happened yesterday – which made my day for sure.  She’s back on the Cpap – her lung just won’t open up well without it right now.  I’m ok with that, but really want to get off of the ICU.  Although I do understand and appreciate that on the ICU she gets 1 to 1 nursing – off of the ICU there’s more opportunity for comfort, visitors and relaxation.  Considering that she’s a stage 4 cancer patient with no immediate relief in sight, having a few visitors really does make a difference.

Yesterday she started talking again.  She was saying ‘hello’ while holding the thermometer to her ear like it was a phone.  She was waving at the nurses and respiratory therapists as they came and went and we all had a good bit of fun.

We’ve really been worried (and still are) about her leg function.  She hadn’t moved her legs at all since the biopsy and would only wiggle her toes if you tickle her foot.  But, yesterday I was playing with my smiley girl and I grabbed her foot with my mouth (might sound weird, but it’s normal at our house) and she pulled her leg away!!!  Then I did it to the other side and she did it again!  Then I did it again, and again…

That was the best thing that’s happened to me besides the day she was born.  I just want her to be better.  It kills me that she has to go through this.  Mom and I are trying to keep it together, but it is SO hard!  She doesn’t know what’s going on, why we’re in the hospital, why she has an incision on her stomach – and back, and side of her chest and tubes semi-permanently installed in her upper torso…why there’s 15 people poking her with broken Q-tips or a team that comes in every four hours and shoots saline up her nose and suctions it out of the other side.  Thank God she won’t remember.

If there’s one thing that I can relay to everyone – NEVER TAKE YOUR CHILD BEING HEALTHY FOR GRANTED.  That is the one thing that I admit I did that I can assure you I’ll never do again.  I just want my baby to be home.  Happy.  Smiley.  Grumpy.  Who cares! Just home!  I’m sure she wants it as much as Carina and I do.

Last note – Carina is an absolutely amazing Mom.  If you’re going to have a kid,  you should talk to her.  She has being a Mom down to a science and it’s her first child!  Literally, if you looked up Motherdom (if it’s not a word, it is now) Carina’s picture should be there.  She thinks about things that would never cross my mind – handles situation with either a fiery fist or a comforting tone.  When it comes to our child she just has it dialed.  I have no idea what I would do without her.  Penelope and I are both extremely lucky to have someone so loving and dedicated.  This is rough stuff, but Mom’s got it dialed.  Champion.

Best

Aaron

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So, Penelope was finally able to start eating formula today…

And – I got my first look at the incision on her stomach!!!

That is freaking huge!!

Aaron

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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

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It’s Rhea again.  Just wanted to tell you what I know.  I think Penny’s mommy & daddy are a little preoccupied right now.

Yesterday’s media blitz was a huge success!  We could not have done it with out you all.  This site had nearly 2000 visitors just yesterday alone.  We got a ton of new donations for Friday’s auction and we got the attention of two news channels.  Penny’s story can be found on San Diego 6 News.  We’ve also received emails from Channel 8 (KFMB) and will let you know if anything comes up from it.  Penny was also mentioned on local radio station KSON.

If you watch the Channel 6 news story, you will hear that the biopsy results came in and that Penny’s particular tumor is highly treatable.  This is awesome news!!!!!  It responds well to treatment and the doctors give her a much higher chance of beating the cancer with this news.

However, today, Penny’s white blood counts and blood pressure are very low.  This is making it hard to fight the RSV infection.  She has been admitted to the NICU and received yet another blood transfusion.

One step forward…another step back.

So lets continue to pray for Penny, Aaron and Carina.  Hopefully their day will improve and one of them will have a chance to come update you with “official” news.

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I have to apologize for not posting prior to this. I really didn’t feel like I had time to figure out how to post with everything we had going on and just the constant worry about Penelope. Aaron, aka Dad, filled you in on the recent events of today and I have to say…whew. I want to try to not put too much in here about how I feel, only because I think my feelings are really secondary to whatever my little nugget is going through, but I have to put a little something about my feelings for my first post.

I went through all of the same emotions that all of the parents and moms go through when a child gets cancer, or any chronic sickness. What did I do wrong? The whole time I was pregnant I did everything I was supposed to, EVERYTHING. My mantra was “If something ever happened to her I wanted the solace of knowing it was no fault of my own”. I told one of the nurses, Sarah, about my mantra when she was reminding me that it wasn’t anything I did and she wondered if it was some kind of intuition I had that Penelope had cancer. That was the first time that had ever crossed my mind. Even if it was some kind of intuition it made me feel terrible still, having that mother’s intuition of even knowing there might be something wrong. After a couple of days of the whoa-is-me’s I realized I could what-if and whoa-is-me myself to death and that wasn’t going to change anything. I also know that Penelope is scared out of her little mind and has no idea why this is all happening and no matter what I try to say to her in the hopes of her understanding she won’t. All she knows is that there are a ton of strangers poking her and holding her down and she wants her momma. So I had to change my view.

Stay strong, stay organized, stay focused. She is scared and me being scared and crying will only make her more scared so, I have to be strong. It is what it is and we have to learn how to deal with it and move forward. It seems silly to say but Aaron and I go in opposing waves. When he is upset and in the “why” frame of mind, I am strong and focused. When he is strong and focused, I’m a mess. It helps most of the time but there are times when we both breakdown. Needless to say Penelope is a trooper. It breaks my heart to see her in pain and many times I just get up in her crib and snuggle with her. I want so badly just to hold her in my arms while she sleeps without the cords and the pain. I want to see her walking and talking. I want her to smile and dance with Elmo and get giddy and tickled when she gives him kisses and hugs. I want to have her Sesame Street 1st birthday party at the park like we planned.

All the “what if’s” are killers but, she’s here and as beautiful as ever. She is loved by people all over the world, literally. She received a personalized bunny gift from colleagues of Aaron’s in the UK and well wishes and donations from other colleagues in China, so literally all over the world. Thank you all for your encouragement, support, well wishes, good vibes, prayers, healing wishes, donations, kind words. Thank you to all of you who know us now, our family and friends, who knew us in elementary, middle and high school (MVHS has come through with a vengeance! Thanks guys!), those of you who have had neuroblastoma touch your lives, cancer touch your life, or some other chronic illness. Thanks to those of you who don’t even know us. Thank all of you very much, it means more to me than any words can express.

Penelope, my angel, sweet girl, ladybug, nugget, baby bean…she is sleeping peacefully right now in the crib next to me. We are in a new room, on a new floor, with a new nurse but she finds comfort in me and I in her. I cherish her, I always have. I have waited for her my whole life and am thankful everyday to her Daddy (or “Dat” as she says) for her. She means the world to me and I am so lucky that she means so much to so many other people with huge hearts. She really is amazing and she’ll get through this, and we’ll all be stronger for having experienced this and watched her persevere. So young and yet so strong.

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So, Penelope’s been having a hard time breathing.  The respiratory therapist came in and they ran some tests.  Turns out she has Respiratory Sincytial Virus.   So my first thought is…of course she does!  It wouldn’t be enough for her to ‘just’ have stage 4 cancer.  It wouldn’t be enough for her to have stage 4 cancer and paralysis over half of her body.  So then, is this going to be enough now?  Cancer, paralysis and a respiratory infection while having a hole into her chest cavity and a partially collapsed lung – maybe that would suffice?!?

Pardon me for being a little bit bitter right now…this new infection pushes our ‘outpatient date’ back at least 5-7 days.  This is really hard to deal with.  It’s just hard.  I just want to take my little girl home, snuggle on the couch and watch Elmo’s World.  It seems/feels like this is never going to end.  Like we’re going to be here forever. We just want to go home.

On top of that, our referral to the Ronald McDonald House was only for a week, so it looks like we’ll be getting booted out of there after tonight.  So, no more being able to sleep across the street from the hospital.  Too – we’d just moved into a new place 5 days before we were admitted into the hospital.  So the house has all kinds of boxes that haven’t been unpacked and I now have to bring two weeks worth of clothes and miscellaneous junk back to the house.  Maybe I’ll just start stacking stuff.

I wish I had better news everyone, but – not today.

Since Penelope has this new infection, and we’re on the Cancer Unit, they are now going to transfer our room too.  We have to go to the Med/Surg ward so that Penelope won’t infect any of the other kids that are getting chemo and have low immune systems.  Just when you think things can’t get any worse…ugh.

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So, today marks the 15th day here in the hospital.  Two full weeks down, and we still have no idea when we’re going to get out of here.  Penelope got her chest tube out a few days ago, but unfortunately she’s struggling to breath well on her own.  We thought we were making progress, as they’d been slowly weening her off of using Oxygen.  But, her cough seems to be getting worse and her Oxygen saturation keeps dropping.  They had to crank up her Oxygen levels again…so we took one step forward and two steps back on that subject.    Obviously, we’re not going home ’til she can breath well on her own.

Our oncologist told us that she’d start making calls to the lab today to see if/when the biopsy results will be ready.  It could be as early as today or as late as next Tuesday.  I’ll definitely put up a posting as soon as we know something.

Yesterday and today look to be pretty uneventful.  We’ve got all of the ‘big’ procedures done, Carina has been taking classes on how to care for a child with cancer every day while I sit with the baby.  There’s A LOT that goes into caring for a little one that has cancer.  Everything from keeping a close to sterile home, to her diet, to changing dressings on wounds, flushing out her Hickman’s catheter, giving sub-cutaneous shots daily, etc., etc.  I’m glad Carina’s school is working with her and allowing her to take the semester off without any type of penalty.  There’s no way one parent could work and do all of this.  It’s a full time job for sure.

I’ve personally been having a bit of a hard time the last few days.  Every morning when I wake up I expect to look over at the crib and see my little smiley girl standing up in her crib, waiting to eat Cheerios and watch Sesame Street.  But, instead it’s this poor, frail little girl that can’t even force a smile onto her face.  I keep thinking that the chemo’s gonna kick in and tumors will shrink and Voila!  Maybe my expectations are too high…I don’t know…when it comes to this subject no doctor can really give you a straight answer.  I’ve asked, ‘what kind of effect will the chemo have on Penelope’, – the standard reply is, “it’s different for every child”.  Which tells you absolutely nothing.  You don’t know if the chemo’s working or if she’s just getting sicker!  It’s really hard.

Penelope got another blood transfusion this morning (it’s still running actually), her blood counts were low, so we needed to get some fresh blood in there.  They are doing chest X-rays every morning to see how her lungs are doing since they pulled out the tube.  The surgeons review them daily and will make any necessary changes if things start to digress.  Fortunately, no one has mentioned putting the tube back in at this point – it looked like that thing really aggravated her.  They insert a tube about the size of your pinky finger in between your intercostal muscles and in between your ribs, then into the chest cavity.  So, she couldn’t cough, cry, laugh – any kind of movement caused pain.  So, let’s hope that we can keep it out.

Ok, gotta get back to work – hope you all have a great day and I’ll post more soon.

Oh!  By the way, thanks to everyone that’s sent me ideas for getting Penelope’s plight into the media.  I’ve been swamped with work and trying to raise funds, so please accept my apology if I haven’t replied to you yet.  I have a few dozen emails to get out, a few quotes and a few invoices, then a meeting this afternoon.  So I’ll try to catch up with everyone this evening.  On that note, I need to put together some type of system to organize the ideas, then set up action plans for each.  I’m working on it though!

Best

Aaron

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