March AGAIN

Not much to say and I am not in the best of moods so this will be short and sweet (ok more like crabby):

Previous posts explained how we came home Saturday, March 3 and went back Monday, March 5 for count check and Caden's aptmt (ear infection confirmed) and my aptmt for fear of walking pneumonia (only resp virus, ha! only?!). G still had his gunky cough that day and ANC was dropped to 0. Disappointing.

Tuesday -Friday lunchtime G was great! Cough was practically non-existent and he was in a great mood w all the normal food and waste perimeters going on. Loved it and I was feeling like we were kicking this virus for good but still his ANC didnt match up.

Friday we had to go into clinic for count check to see if that ANC was climbing. I rushed out of work at 1:30, got T early from school, grabbed G n C from home and still made it to clinic in time. From the time I grabbed G and we arrived to clinic he did not seem himself. Total 360 from the checklist of questions I bombard my motherinlaw with when it is my turn to take over after work. He just lied there all limp in clinic. Surprisingly counts were great. ANC 1, 300 and all others up and hanging tight. But his mood concerned even Dr Dell. He worked every angle to get a smile out of that kid. T and C appreciated his efforts more than G did. I explained that this is how he acts right before we are faced w a fever at home. We left w good counts and instructions to keep an eye on him and call w any concerns.

By that evening at 7 pm he had a fever. At 4 am he had a 20 min coughing fit following some concerning breathing patterns while he slept. Saturday his fever peaked at 39.6 and teetered around the whole day. We ordered dinner knowing that in a few hours we would be instructed to bring him in. We called right after dinner so that we could at least enjoy a meal together before we were separated again. I was in the ER w G by 9 pm. He barely ate, drank or left the couch all day. It was inevitable. I was so glad we saw Dell the day before so he could see what his "brewing" behavior looks like.

We did the usuals- PCR, CBC, cultures, tylenol, pump syringe of cefapime and a new one Tamiflu. He presented w flu like symptoms upon arrival so they took that route (shakes, chills, sensitivity to touch). Cefapime is being administered at 2 and 10 pm, and 6 am. Tamiflu every 12 hours. Until we have the culture results and PCR we are treating it as a flu. Ironically hours after we were admitted (around 1 am) daddy texted me to say T woke w chills and a fever. Why not?! I was afraid something wasnt right when I talked to him about why G and I were headed out again. He was understanding as usual but kinda moaning while he lied there. I wasnt sure if he was starting to not feel well or fighting back tears upon my absence. I held back my tears and got into mommy warrior mode to get G to ER. He is home from school today.

 G has been fever free since Sunday morning.Mood varies. Eating ok but wish it was better. Drinking poorly but is on fluids at least. We may decrease his fluids soon in order to see if his urine is holding steady on its own. Still dont have labs back so we wait. That will predict if we go home on intravenous antibiotics or what.

in other drama-
Since Wednesday Caden figured out how to climb out of his crib. He is so stealth about it too. We joke and call him ninja. T n G never did this. Makes me a wreck. So now my baby that has put himself to sleep n slept thru the nite at weeks old by simple dumping him in his crib no longer exists. Since then he does not nap unless he is completely exhausted enough to skip the fight. This also means the second nap of the day is being avoided by HIM. It is such a game he has created. We were going to switch him to the big boy bed Saturday but realized we were headed to ER w G so it was not worth trying a new transition w out mommy there to lay the law and testing daddys patience.So we wait til this weekend I guess. Nonetheless since G and I have arrived he is driving them nuts with this new stage. He insists on independence and I love that about him. He has two bros which means twice the motivation to do it all and he has completely hit the fast forward button on me. He also added the ability to indicate his need to pee, set up his seat and go all on his own this past Wed-Saturday. It was his lead and my follow. So much so that he refused to wear a diaper and the only compromise I could come up w (since he is not 100% yet) was a Pullup. The novelty of it won him over. While G and I are here I know for sure none of this progress is presenting itself at home and that is ok. One less thing for Mamac and daddy to worry about. I will pick up where we left off soon enough. Either way it is changes for the good and craziness that we are VERY familiar with. It would have been nice for Caden to wait til spring break or summer so we could get some sleep while adjusting to it all but oh well. Hes got bros to impress I guess!

keep you posted about G later

School holiday, who knew?!

Monday, March 5, 2012
Pulaski Day

Original plan for the day: Get G to clinic for count check by 9 and Caden to his 10:30 aptmt to investigate the continuous cold and newer symptoms of green mucous seeping from his eyes and nose. Then NAP to do some recuperating from my own illness and draining hospital stay w mommy work waiting for me upon my return.

spoiler alert: Polish guy not in my corner today

7:00 remember I dont have work today but that doesn't seem to make me feel any better medically! I cant even pick my head up off the pillow.

7:20 am Finally get my explosive feeling head out of bed to be sure T is actually eating his breakfast instead of planning how to recreate some perfect biological world with every little detail figured out in his journal or something!

7:30 Charito announces he does not want to follow through with the aptmt I made for him regarding the raging red eye I came home to on Saturday after w a week in the hospital. I was convinced it was pink eye but bc he thinks he is feeling better he insists I go since we would get charged for a absence fee anyway. I agree that it is prob best I go in and be sure I don't have walking pneomonia. It is already hard enough to get in w my work schedule and well, everything else! And seeing as I remember the signs of how quickly my cold turned to pneumonia in 2010 I dont want that to happen again. Ever Since G and I returned home on Saturday and I got moving more than you do in a hospital room I realized how the littlest of chores were wearing me out. I was clearly out of breathe and struggling after a flight of stairs or hoisting up a load of laundry. It was bad. The sinus pressure had decreased but the tightness in my chest was ridiculous.

7:40 A great friend comes to grab T for school and I now have less than 45 minutes to get myself and Grayson and Caden to an 8:30 aptmt. By the way, G is still sleeping and Caden is dressed thanks to daddy but still needs to be suctioned. And we are already late there is no way G is gonna get his asthma meds in time so I will have to admin to him at dr office

8:15 in car thanks to daddy loading up kids and stroller

8:20 from the car  I am courteous enough to call our adult dr office and let them know that they are no longer seeing a male but a female and give them time to pull together files (I know how hospital time works these days)

8:35 meet receptionist

now I wait while my lil ones sit w masks on to shelter from whatever is roaming around the sick waiting room and protect others from my sickos coughs

once seen dr agrees I have a resp virus and cannot do anything for me but if I get worst I am to call him and he will call in an antibiotic. Mission accomplished tho-just wanted to be sure my lungs sounded clear but wait....it's 9:45!!!!

LATE for clinic!!

Rush across Dempster to childrens offices and find crappy parking. But of course as soon as I reach the sliding doors I see 5 open spots way closer than I was stuck with! Annoying!

10:08 now so I stop in to peds office and ask if they just want me to wait around for Caden's 10:30, take me earlier or be okay with my tardiness as I run up to oncology clinic for Grayson
They don't want me to be late so I sit for 20 min and take care of Caden first. The lovely ladies behind the desk know us so they call up to clinic to tell them we are right below them and will be up soon.

10:30 we are in a room and undressing Caden. He recalls his last vaccinations (5 of em in one sitting) and so he is not too happy. Everyone notices his goopy face. After a few minutes later we discover he has ( to my surprise as always bc my kids never display the textbook like symptoms) an ear infection. Explains the whole ear, nose and throat greeny goopy thing. Well at least we know and he can get an antibiotic vs a resp virus w no option for antibitioc. His lungs sound nice clear, too.

11:00 we are upstairs for G at clinic to wait some more bc they just got slammed w patients the last 20 min and there are no rooms for us. I dont mind the wait bc at least I get to sit and eat a Kind bar, my first bite of food all day.

Enter clinic hallway and G runs to hug Meghan (Princess Jennie is officially gone, off to new paths!) and Dr Kwon. Caden follows his lead and hugs Dr Kwon too! Then we are sent to our exam room but we are not going into room 1, 2  or 3 bc they are full and we have to go into 4 G throws a fit. He's telling us Dr Kwon wont know where to find him , he cant go in number 4, it is not Dr Kwon's house. It is not until his maiden Aerum appears to calm him and escort him into room 4 with books that he finally gives in.

He gets accessed and we wait. I fill them in our latest diagnoses and we all just roll our eyes. It is getting ridiculous these days.

Up until this point the boys have been doing great. They have been snacking (Caden actually eating more than he did this time of day the past two days), reading books, playing on my phone and waiting and waiting.  Aerum brings G an Ipad to keep him occupied ( I forgot our busy bag at home bc I was so rushed).

12:00 Meghan comes in w his counts. All are fine but ANC AGAIN! 0. As in ZERO!! any help the neupogen gave on Saturday for us to be discharged has been depleted. Plan of action: hope he doesnt get a fever in the next few days and bring him back in on Friday for another count check. Chemo is on hold for an additional week. That is two weeks now without any chemo meds and that scares me. We have never been on hold this long before. I realize we need to be bc you cant give a kid w 0 fighting ability in his system the poisons we know as chemo. I get it but seriously this is getting whacky!!

It was a frustrating point to my  day. At least when we were leaving the hospital on Saturday w a dragged out stay thanks to neutrophils I believed it was all behind us and could move on. Who knew I would get sicker, Charito would be sicker, Caden had an ear infection and now we do this all over again. I dont have the energy to! And now I am supposed to go back to work tomorrow and meet my dreaded deadlines and still worry about Grayson. He has nothing protecting him right now and that is shitty scary!!!!

Bu the time I got back to the car I wanted to cry but I still had to pick up Caden's amox, get the boys some lunch, eat something myself and drop off movies at blockbuster (damn one near us closed). We walked in the door at 1:45 with enough time to eat lunch and be ready again to get T from school. The lil ones took mini naps in the car and I got none!

So I sit here venting n  dragging out their naps bc I want them in bed in an hour. I am so glad what little brain cells I had left on Sunday night prompted me to get a stew in the crock pot. That and a soup MamaC dropped off yesterday are our dinners for the week.

I am just so frustrated bc had I known my day was going to be like this I would have REALLY been a lazy ass yesterday. Instead I did laundry and cleaned up the kitchen. I barely fed my children bc I was so tired. No big extravagant meals were prepared. I missed them so much that yesterday they were told they could have whatever they wanted to eat all day long. They had oreos, sunchips, goldfish, pears and veggie straws for breakfast. Who knows what G n c had for lunch but T and I had popcorn and candy and pop (I took him to see Lorax bc his class was meeting up at Muvico, and when I got there they were sold out so I had to find another location so he didnt feel left out when everyone talked about it on Monday). Pizza, bananas and rice for dinner and I am pretty sure they had dessert. The only calm time I had was when Charito and I watched Walking Dead and even then G was still awake hiding behind the covers bc we 'are naughty for watching zombies that scare me'. Well, priorities are priorities baby!

So there we are. After a week and half of feeling like we would make progress I feel as though we made none. Pretty annoying and shitty if you ask me. I just want us all to feel better and have some family time. This weekend we are clearly on bubble lifestyle and cleaning this house some more. I dont know what else to do!

Day 5 or 6 update

This morning's CBC displayed an ANC of 0.
It literally dropped from .1 to 0
So we looked into another plan. Neupogen. heres what it does:

 http://a4.sphotos.ak.fbcdn.net/hphotos-ak-ash4/s320x320/426732_10150592683688757_17877463756_9175455_1485620104_n.jpg

We have not had to use this as an option before but working w absolutely (and literally) 0 infection fighters it was worth a shot.

Depending on how well it works would determine how soon we go home, on or off antibiotics and so forth. More waiting.

When he was about to receive the Neupogen and another dose of cefapime  (the antibiotic he has been receiving intravenously every eight hours since Sunday) soon after we ran into a problem. His port was flushing  (going in one way, into his body) but not showing a blood return (this is when they pull back on the syringe that is attached to the tube attached to the needle in his port and that force pulls blood out of his body to show that fluid is flowing both ways like a two way street indicating no clogs or blockage). We couldn't understand it bc there was no sign of swelling or redness near the port site and he had blood draws done earlier that day. And when this has happened for a split sec in clinic we just lie him down or reposition his chest to get the blood flowing in the right direction. These tricks werent working this time. He was getting pissed too. He had complained of his port hurting the night before but we checked into that twice with two separate occasions of blood return checks. He was fine. The only thing that explained that complaint was that when we come to the floor they use a different gauge needle to access him. Clinic uses the precise sized needle for his port perimeters. The one on the floor protrudes quite a bit and we have had to come up w solutions to pad it or the needle moves around on his port site. Picture a nail on a chalkboard effect but without the sound. So we are thinking that after almost 6 days of being accessed he is so much more aware of things at this age that he is feeling every little nudge that needle makes and the tegaderm (huge clear sticker that goes over the site to protect from breathing on, germs, liquids, etc)

 does start to loosen up. This dressing is def beat up today. You gotta remember, this is the first time we have had a long stay in which within the 24 hours he was back to his old self and then some and we are waiting for his angry blood to catch up to that. This kid is jumping from the couch to the bed, running back and forth, playing hide and seek behind the curtains and so much more.So the dressings are loosening, additional tape is coming undone. We fixed that by adding another tegaderm over that. So I can imagine w all the activity he has he may have jerked the needle to cause some probs. But we had an option before even thinking about removing the current needle and reaccessing him.
Alteplase http://www.drugs.com/cdi/alteplase.html

Never had to resort to this either but it worked. It came in a syringe, nurse pushed it into his tubie and waited 30+ min. Came back and wallah, no more clog. The neupogen was underway and the cefapime followed. Now we wait to see what counts are tomorrow.

I know this sounds like alot and it is. No doubt stressful but minor compared to other things/reasons our fellow cancer patients are here on this floor with us for this week. Some have been through various surgeries, here for more than 3 weeks and still suffering through alot of unknowns this evening. Scary stuff. Gives me perspective for sure. And as always, I appreciate all your prayers, thoughts, jokes, mini drop bys outside the main doors to give me my fix of meds  (thank you K, the mucinex is already working!) or a treat for G. We may be in isolation but some of you have found one way or another to help in anyway you can and we appreciate it. I cannot deny someone the opportunity to give or help when I know it heals your heart just as much as mine along the journey. I understand that now. Countless meals, cleaning and laundry assistance, hugs,  shared tears, gifts for not only G but his bros and one unforgettable benefit taught me that more than a year ago! We are blessed, I know I say it alot but it is oh so true.

Other ramblings-
I want something nasty and greasy. Portillos is calling my name. Or Mcds. And after that some sushi and some crazy dessert table. Yes, I emotionally eat-- it is yummy therapy.
I NEED a massage and pedicure. I NEED NEED NEED to shave my armpits, gross! I want a really HOT shower. I want my bed, my boys, my man and a sloppy kiss from Bry. I miss the smell of each of them, You know how no matter how old your kids get they each have their own unique smell that you never forget!? I miss driving. I needed an energy boost so bad today I wished I was outside during that pretty rainy snow tonight letting it whip me in the face no matter how bad it may have hurt. It would have felt so nice and cool on my face. When I ran downstairs really quick to pickup my care package from a friend ( the first or second time in a year n half I felt comfy enough to leave him w a random stranger hospital volunteer , but only bc he was napping) I took a step into the gift shop for peek. I saw two necklaces I really liked ( some talented lady must be renting a spot in the store to get her name out there) and I regretted I didnt have my wallet w me. Tomorrow I just may buy them for myself. I love them chunky unique pieces, especially the ones that catch your eye and pull you in bc of the mood or situation you are currently absorbed in. It is like you are acknowledging in that moment that yes through that item "I guess that is how I am feeling, or accepting of this moment". You know those wierd a ha moments right? Or am I just crazy like The Shining right now, psychopath  hallucination like cabin fever?! Talk to me people! It is not time for Red Rum is it?!! Peggy help me out here!

 I cannot tell you how many times G thinks of G and c and daddy. He sees a commercial for some toy or game and asks me if he can buy it for T. He also adds that c doesnt need anything bc he is still a baby. He ends his rant (after I have tried to convince him to just put it on his list or that it may be too expensive) with a n interception of my excuses with this beauty , "because you know mom, sharing is caring!"  Thank you My Little Pony and Strawberry Shortcake episodes. How can I say no to that logic?! If I could drag that kid into a public place on our way home this weekend I would let him buy whatever for himself and his bros. His heart is huge for such a pint.

I miss going through Ts folder and reviewing his schoolwork. The way Caden pats my back like he's calming me, protecting me when I sing our goodnite song. He pats right in rhythm with my words. I miss alot.

But being here alone with G has had so many great moments. This kid continues to amaze me. The alone time has given me the chance to see more of his talents and interests that get muffled in the demands for attention of 3 boys. So often they are each shrieking to be heard and seen that alone time is so limited, especially when all they seem to crave is time together. A vicious circle. His puzzle skills continue to soar. He is locating apps on the ipad for these magic 75 piece puzzles that he zips through. Im talking like classic artpiece scenes from Davinci, complex pics. He is showing me how strong his memory is. Through conversations it is clear he is an abstract thinker. Thinking outside of the box and needing results and if not at least coming up w his own predictions. There are always options to him, not just one answer is enough. He likes things his way that is for sure. Today he had a coughing fit after running around this room that led to his asthma acting up. He coughed up a wad of spit bc he coughed so hard and it landed on his shirt. I didnt have anymore clean shirts in our bag so I told him he could wear one of my tshirts. You could tell he really didnt like the idea. Our nurse offered to place our clothes in the wash to help out his dilemma. He was over the moon. While the wash was being done he napped but low and behold the first thing he mentioned when he woke was if Nurse C had fixed his laundry. He wanted his Thomas shirt on. He is so lucky he has girlfriends here. I had to laugh inside bc T loves wearing my too small tshirts, its a piece of mama to him.
Even through tantrums and his demands for immediate satisfaction he remains kind, polite and compassionate to the core. I love my guy.

Let you all know how tomorrow goes in the am. Im off to bed. Wild boy finally passed out 20 min ago!

And...

did I mention that I have had a head cold all this time and yesterday the sudafed stopped working!!!

done ranting (for now!)

update...blah

Just saw Dr Dell. Maybe we can go home tomorrow w an antibiotic via his port. ANC is still ridiculously low and not climbing yet. He reminded me that it could take a while.
The virus we are dealing with whatever it was, crushed them neutrophils. Now we still have to worry, as always that there isn't something bacterial hiding somewhere. All about precaution and making sure he has some sort of protection or armor to leave here with.
We shall see what tomorrow holds.

Things are fine at home though. Daddy commented today that by last night they finally had a routine down pat. MamaC has been great and stays until C gets home and then rushes off to work the store. She insists on helping and wouldn't want it any other way. But I can't help but worry about her. That woman! She gives and gives for her son and boys. luv her
And we have amazing people taking T to school and bringing him home, toting him to afterschool activities and offering up anything we may need. But really we are doing well. Just hard being apart that's all.

I miss the little things. Ironically the same things I b%&# and complained about, weighing me so heavy into tears most of the past weekend before our admission. Yelling at Caden to get off the furniture with his acrobatics. The way he flutters his eyelashes like a girl. Today T had a field trip and I wasnt there to remind him to stay with his group. Then I received a call that he ran/walked into a wall after lunch and has a cut and bump on his head. Hated hearing that from far away. Hes fine but still.

And then to think that as soon as we do get home I am faced with the overflow of laundry and mommy-needs all around the home. I don't miss it but it will need my attention. But I will most likely be putting that crap off in order to take advantage of long overdue family time. G and I havent seen any of them since Sunday. Charito has a cold and bc of the practically non-existing ANC count he has not been able to visit. For the same reasons I have avoided visitors altogether. It is best for G.

So we wait...some more.

Proof he is kickin' it!

Reading with Areum !
love the way he locks eyes with her
he adores her

everything was dipped in Ranch (typical steroid pattern!)

Built "my creation" and would not tear it down until Dr Kwon saw it. Stayed like that for two days til it was Kwons turn to see us. They both were proud.

The newly created puppet show with his oversized hospital sox

going pee

more Ranch

love that butt, barely any in them undies

Still here...

But you wouldn't understand why if you saw him!

Cancer is doing its dirty work today and for the past two days! The virus has crushed his immunity build up and his ANC remains at .1

It isn't even creeping up! To a 1 at least?! Ugh

Another example of how cancer runs our life. You should see him! I swear he thinks he's on vacation! Having fun and then all of a sudden the recovery of the virus hits hard and crashes fast and passes out for a long nap. But still he remains fever free and eating and pooping and doing all the great things most of his body feels ready to do. Now if only the rest of his cancer ridden body would cooperate!