October (lowlights) and its only the 11th!

I know I still have so much to catch you up on since March but I am feeling the need for venting right now. Here is how our past few weeks have played out and let me just say it is not helping the moral around here.

Sept was filled with the ups and downs of the teachers strike leaving each morning up in the air of where I would be picketing, how far would I be away from home, who is taking kids to school and who can watch them that early in the morning if need be. Stressful.

Sept 18th-Grayson was not feeling himself. It was our anniversary and even though we had hopes for a family dinner at Cheesecake Factory that idea was out the window. My allergies were in high gear days before leaving my bday pretty uneventful. We did manage to meet my parents for lunch tho that weekend. We ordered in dinner and decided to do a impromptu trip to the new Mariano's for a maple bacon donut. It was the day of their grand opening and the whole neighborhood was talking. We wanted to see what the hype was about. It was worth it!

Sept 19th-G had a fine day at school but within an hour of being home afterschool he is screaming (and I mean screaming!) that his ear hurts. For a kid that NEVER complains even during chemo I knew something was wrong. I called the pediatrician several times insisting on an aptmt and finally got in at 7 pm. I get so stressed when any symptom that can clearly point to something -like duh its an ear infection. I worry about how fast it will spread from a "simple" ear infection to something more serious for our guy with a damaged immune system. By 8 pm and again at 2 am bc I was damn sure I was gonna get it under control he had two doses of amoxicillin in him and he was his old self but we were concerned his counts may have dropped while fighting it so we kept him home that Thursday and Friday.

End of September we are informed that bc of the strike we are making up our strike days during my first week of fall break (I would have had two weeks off to breathe). This school year has been beyond stressful without my trusty co-worker (luv you Becky!) so I needed the break. Thank you Rahm and Brizard. And that my spring break has been moved up a week meaning for the first time I WOULD HAVE HAD the same week off as the kids. NOT NO MORE! Thank you again, Rahm n Brizard-----*%*@!! Not that we would have gone anywhere but its nice to know that the family time with no other interruptions and work schedules would have been omitted. Family time is VERY precious to us. So yeah, I am pissed.

We also filled Sept with lots of boy scout stuff. It was pretty overwhelming. I alongside my buddy Krista and our pal Ed are the leaders and us gals know nothing of this scout world. There was alot to digest these past few weeks and

October 1st-Grayson has chemo. Easy breezy vincristine and counts. Labs indicated great counts which made us feel good about the colds that were going around in Sept in his classroom and a good chance he was protected as best as best can be during those past couple weeks. He was also due for a flu shot that day. We didnt lie to him. we let him know that this poke in his arm was going to hurt. He immediately became anxious and Nurse Maghan and I looked at each other like let's get this over fast. Well, poor guy was so anxious that he pulled away at the very end and the last bit of the vaccine dripped onto the floor. What now? We do it again, today or next month. I wanted him protected at school so as long as he was crying lets just get the whammies over with. So there he was getting another painful poke in the other arm. He was so upset that other staff members were coming into our room asking what the hell happened bc they never hear G crying. He simply stated  the truth, "Maghan hurt my arms!". What a whammy to her spirits as well! That cutie pie earned sorry points with her though-two Mcds gift cards!

Oh crap! We realized G's bday is coming up fast! It flew up on us . We havent had to plan for his own bday since he was 1 yrs old so we were out of touch. He finally had class friends so I rush to get a invite put together thru Walgreens and get it into his friends' backpacks the next day. Whew!

Oct 2nd-Charito wakes to get up out of bed and I hear him collapse to the floor. He was absolutely fine when he went to bed. He cant move his foot, cant point upward or any motion that involved the movement necessary to walk. He is literally scooting to the bathroom n down the stairs on his butt bc I could not hold him up. We call his mom to bring his dad's crutches w her. I call a friend last minute to take kids to school while I rush to get them ready and be late to work myself. I call him mid day and he is moaning in pain. My mind is all over the place. His dad suffers from gout all the time but it is not his toe affected. It is the top of his foot. He is in major pain just to slip a sock on! My momcologist /honorary nurse mind is brainstorming-rheumatoid arthritis? Autoimmune disease? At mid-day I decide without caring what he thinks that he needs to see dr. He is NOT going to ride this out for a few days and hope it gets better. He couldn't even go to work and neither of us are ever in a situation to eat away days when we need our days for hospital stays. By 3 pm I am wheelchair-wheeling him into dr office. 3 doctors take a look and are baffled. Charito's verbal description matches gout diagnosis but odd and rare location. X rays say no breakages. We leave w prednisone to cut down on the inflammation and are ordered to return on Thursday for blood work results.

Oct 3rd-C stays home. I go to work worrying.

Oct 4th-G had his first field trip to the Peggy Notebarte museum. He was partnered up with his pal Mikayla and her mom and I couldn't have been happier. I unfortunately missed it bc I had an IEP scheduled that day. he did great and the mommy took such memorable shots for me.

Later at the drs it is confirmed to be gout. High uric acid levels said so. Funky location but it is what it is. But that is not what really worried them. There's always a "but" in our lives isnt there? As soon as she says your blood work had some red flags... I interrupt with "was it his red blood cells by any chance?". She nods yes. I explain how Caden was diagnosed with thalassemia in Aug and through that we are told Grayson has had it too. News to us actually but I can understand why it never came up. Leukemia is a MUCH bigger deal don't you think? (this is it's own stressful story in itself but let me just sum it up by saying-the referral for Caden was to see Grayson's drs. Yes we were worried but we would have been a SUPER mess if it was an entirely different team of drs we were to meet up with. At least it was a team that knew and watched Caden grow since 5 days old and take such amazing care of our Grayson. But I would be lying if we said we weren't worried. What comforted us? Knowing it couldn't be any worst than cancer, right?) Charito's dr says what we already knew is that it runs in mediterranean and asian blood. She suggests a smear test to confirm her thoughts. I get tested too to rule me out just in case. If I was affected I would have to inform my siblings as soon as possible. As we left we were also able to get our flu shots to protect G. Alot was discussed and marinated during that one and half hour visit!

Oct 6th-Triston had a soccer game and Charito is able to hobble around finally without crutches. We are thinking the flare up is subsiding and now we just wait for the next one which could honestly be a whole yr from now. No telling.

Somewhere in between all of this my fatherinlaw is in and out of the ER with heart issues (which causes so much worry on my ma in law and hate to see her like that. She is a cancer patient herself and I never want anything destroying her positive spirit and yet she still insists on being here w the boys to help us out, our boys continue to be her best chemotherapy) and my grandmother is rushed by ambulance with congestive heart failure. She is still in the nursing home.

Oct 7th- T goes off to a party for a good friend that is moving in a year. It was so sweet and he had a blast. He needed something fun and distracting among the chaos.

Oct 8th-Kids are home from school on Columbus day (not me thx again *&%$##). All three of them home to drive the lulas nutso had me worried but they were great. Not even an hour after I got home from work G is begging me for a nap. I try and stall him with no luck. It was evident his body needed it. He wakes crying hysterically that his ear hurts. WTH. I call peds to see if I can get in since they have late nights on Mondays. No luck. But they get us in earliest Tuesday at 10 am. The nurse mentions to give him tylenol but I hate to in case we mask some other symptom that his oncologists then need their own phone call in for. But after 40 min of him unable to calm down I give in. He is absolutely fine within an hour. I think we are in the clear. Stupid me. Right before dinner Triston throws up out of  nowhere. At 1 am he wakes with the same pain. I give him tylenol. Good news-no fever accompanied with it. Old ear infection never cured? New one? Same ear. IDK.

Oct 9th- We did not send the boys to school just in case.I leave for work Tuesday morning to get a few hours in and leave to take G in. I bring Caden with just in case he has a "quiet ear infection" bc of his better immune system. I am even wondering at this point if he is the carrier and only G is getting slammed with it. When I come to pick them up at 9:30 I observe all this runny dried up wax caked on the outside of Gs ear. Drainage. Possible perforated ear drum is my thought. The awesome Dr Belmonte tells us that it appears to have been one but at least there's no hole remaining decreasing infection. Other good news-although he was uncomfy the past 18 hours his body handled this all on its own. Screw you leukemia.  I am given a script for a stronger antibiotic, Cefdinir, to administer if he complains of ear ache again. Til then we are to administer ear drops to clear out any remaining bacteria. I drop them off and go back to work. The rest of the day he is fine. He is fine to return to school according to dr. By dinner time he has loose stools. No fever. I hope it isnt like that in the am.

Oct 10th-G's bday. The big 4. He his hard to wake. He says he wants to go to school but begs for "a wittle bit more time to sleep". Not a good sign. We give him 15 more min and he falls back to sleep. I call in the early am from work and he is on the couch and too chill for my liking. Not lethargic but not my G. I run to Marianos to pick up the Thomas cake he had his eye on at the grand opening. As I am handing my credit card to the cashier the tears flow. I know to never expect a perfect day. But I had hoped after that ear clear up nearly 24 hours before that he would at least be able to share his bday at school w his friends. Now with how he was feeling we had to cancel my family coming over that evening. No fair to put him in the position to force himself to run and play if he is not up for it. Or to pass something unknown onto the nieces and nephew. Especially my new niece that I haven't even me yet thx to cold/flu season. So here I was purchasing a big ol cake for only the 5 of us. I come home during my break to check on him and he's on the couch sleeping. He runs to me and I show him his cake. He loves it and thanks me over and over again. Then he asks when his family is coming over. I have to break the news. He is bummed. Me too. I give him his ear drops and try to leave. Try! By now it is clear he is not feeling well and he just wants his mommy. He is begging me to stay and hold him. I hold him tight as I fight back more tears. I have to go.
By the time I get home he is running around playing all over the place. Great mood and eager for his cake. he gets plenty of phone calls from family wishing him on his big day. I am feeling good about his behaviors but still bummed that he is not getting his little party. The 5 of us eat pizza and sing and dive into the yummy cake. G seemed so content with the turn out of his evening. He just reminds me that he is a boy that does not take much to please. Oh and did I mention that the favors for his party arrived from Oriental after I had to rush shipping w a $32 fee and 1/4 of my items were missing! When I called them at 7pm the one thing I needed the most was out of stock. yup, I cannot make this shit up!

Oct 11th- Since midnight he had a restless night. That makes 3 in a row for me. I barely slept listening for any sounds of hurling or breathing issues or anything. We were so deflated as a family emotionally that we just wanted to feel our love so much that all kids slept with us. T got comfy on his sleeping bag on the floor and Caden would nuzzle for a bit until he decided his bed was much more spacious. G always sleeps w us when he is not himself. By one am G woke with "my ear is starting to hurt a little bit". Of course it is! I get in the car and head to CVS by 1:15 am.  I am not &%$## around with this damn ear anymore and filling that prescription. But why would that go smooth?! There was a typo on the script and they had to contact the dr in the morning before filling it. Of course, when I want to get a dose in him as soon as possible I cant! He hadn't complained at all since Tuesday! And every hour that passed meant the possibility of pain. Right now it was just an observation to him, an annoyance. I did not want the loud screaming and crying again. I did not want an ear problem to evolve into some ENT respiratory issue within hours! I do NOT want or have time for a hospital stay! But nothing I could do. By the time I got home he was asleep again. He woke to loose stools once again. His mood is fine, appetite great. But I felt this deep need to monitor him (and honestly was exhausted by now. No sleep and worry wart for 1.5 weeks for all 4 of my boys and I was spent. Charito has been unable to do anything with his foot. We thought it was getting better and on Tues and Wed it was bad again. He cant do laundry,wash dishes, take out garbage nothing. He goes to work and comes home to put his foot up. I am beat. I stayed home from work today). We have avoided dairy since T's vomit episode Monday and yet he was still having loose stools. If he had any other major symptoms I would have called oncologists. By now I am convinced that the stools are a sign of whatever type of infection he is fighting. Overall his body is doing a damn good job if there is no fever yet.
But boy was I glad I stayed home. I was able to take T to school and have face time with his teacher, get to the bank, and do other errands I was unable to accomplish w all these dr aptmts. And the best part was that by 8:30 am CVS called w the antibiotic issue all cleared up and ready to be picked up. And I was home to catch the phone call from Charito's dr and issue my complaint that he was still unable to walk like he used to and we arranged a new script for him to get this under control. When I got back at 9:30 am G was ready for a nap. He usually does not nap at home and his body read give me a nap! Gave him a dose of Cefidrin by 10 am hoping we can kick this thing. He woke whiney and said his head hurt.  The stools remained loose. He is still a bit up and down, the kind you get when you arent up to par and just want your mommy. He needed me today and I got lots of cuddles in. Even Caden was happy to spend the day with mommy (he woke w a runny nose again so he needed mommy too).
We don't like the off and on needies he had today and the stools. There was even a point today that I thought  a fever was creeping but we didnt reach the dreaded 38 celsius. We are keeping home again tomorrow. His big party is Sunday and we want him as best as he can be for it. We know there is a chance that he may not be well enough for it. The party will most likely go on without him. We will cross that bridge in the next couple days. Things have been so hectic that I realized in the car today that he never even opened his presents. Only Caden had a chance to pick something out for him. T and I never got a chance to go shopping, nor daddy and I. G never even asked for anything on Wednesday. That cake was the highlight of his day. I finally brought them in today and it kept them busy working together as good brothers should.

I will keep you all posted on his this bug we seem to be dealing with.If it continues much longer we are going into clinic to check counts. All I ask is that you send us some prayers for him to be well enough to attend his party on Sunday. He adores school and is so fond of his classmates that I really dont want him to miss it. This boy deserves this party! Thank you!

4 big boy candles-2 yellow representing 2 yrs of his precious life fighting leukemia and two representing (dare I say it?!) our fav character Thomas. Oy veh!

4

My guy is 4 on 10/10...he is one hell of an amazing package , don't you think?!

I love you, Sushi! What you have confronted, laughed at, cried at, yelled at, gained, lost and conquered in your 4 yours continues to blow us away.  Here's to SO MANY MORE to come! We are right here next to you , fighting on. Keep on chugging!

September 15

Today is my birthday. Just another day really. And as much as C wanted to do something special out and about I was happy with what was already planned-T's first soccer game of the season and a long family nap. A day with my boys. And as I wish my wish---- for a cure for cancer---- I realize I DO HAVE what it is that I NEED...I still have it and for that I am blessed: ALL 3 of my boys (and my rock, my brown boy). This cancer journey we are on may have stolen a lot from us but there is still plenty I will continue to fight for til my last breath. 

Two years...

down, 1.5 more of chemo to go.

mini update

Grayson finished his last steroid for week this am. His moods def kicked in early on Tuesday (continuing the same pattern we have observed --it only is taking about 24-36 hours for the steroid monster to appear each month). He had a very short fuse yesterday. He told me many times (any time things did not go his way) that I WAS the naughty one and I SHOULD be the one taking a break in my room! Pleasant. After a no arguments nap for everyone he woke in a better mood just whiney. That was when we decided to tire them out w the bounce house. That way they got outdoors and Charito and I got to enjoy some outside, too. Earlier in the morning we went for a walk and that was nice right before lunch. Weather wasn't too brutal then.
Today we are just waiting for Monday to come and check his counts. Caden and I went to Target and he was SOO good. That boy is a completely diff child w out his brothers to compete with. Luv him. He held my hand the whole time while I pushed the cart and plowed through our list. He would ask right before he wanted to check something out and stayed nearby. Such a big boy!

As for me-I am trying to relax. Summer officially began yesterday and so far I have been eating like crazy. More emotional eating that I hope to get under control this summer ( or maybe fall?!) I am loving staying up late reading and vegging out to silly TV. I am determined to get thru the first season of Grimm before it expires on ONdemand at midnite tonight. We shall see. Later...tv and ice coffee are calling my name.

Summer kickoff moods

Hi all! I know it's been awhile. Been MORE than busy and quite frankly my moods have been all over the place and blogging hasn't been on my priority list. I haven't felt that usual pull toward it and didn't want to force it. But here I am.

Quick update and I will move onto the abundance of stories that I am way behind in soon! Yesterday was my last day of the school year and it is officially summer in this house. I don't know if Triston or myself are more excited to finally have me home for a couple of mos. He's been counting the days since his graduation.

Grayson had chemo on Monday-vincristine and counts. Since his May visit things have been pretty much the same. Great moods, appetite, waste output and counts. We expected the same on Monday, until I saw nurse Magan's face when she walked in w the sheet. All she said was really low! And wow was he! 160 ANC. He has not been that low since our March hospital stay. TOTALLY neutropenic! He only has 160 "fighters" working at fighting off infections and germs right now. He is usually sitting at 1,200 or so. A plummet. And the frustrating thing was that he was in such a great mood and has been ever since. So since Monday we are on high alert, chasing germs and keeping a close eye on everyone. It is more than stressful that is for sure. And it def put me in a whoo is me mood as I approached my last day. Any ideas I had of taking the kids out to a picnic or whatever to celebrate were not to happen. We put all father's day celebrations on hold with my dad and PapaC.

We go back on Monday to find out if ANC is on it's way up. Keep you posted. Had more to write but now they are all screaming for my attention and all I want is naps! Talk later.

Still here...

I know it has been a while but the school year is winding down and I will be FREE in four days. I dont know who is more excited-me or Triston?! I have tons to catch you all up on and will do so in the next week or so. Luv and thanks for your patience!

hating cancer...again

While everyone else is off on mini road trips or far off adventures we are here at home. I was okay with that idea on Friday. It was the end of a VERY busy week at work that had drained any energy I had stored up to put a smile on my face while we hosted over 100 families at our annual preschool event all over campus. I put that smile on and truly enjoyed all the laughter and smiles from each and every child, all the work we put in since January paid off as usual, to the point of tears. But as soon as I entered my car to head home for a long weekend I began to cry again ( for some reason they flowed that morning, too. I blamed it on overwhelming anxieties and stress from the weeks prior and coming up). I was feeling empty and overwhelmed. And yet I had so much to be excited for this weekend. My parents were FINALLY coming home FOR GOOD!  And I had a long weekend to snuggle with my boys and suck up every and any little moment that I have grown to treasure in all its glory since we began this journey. And Triston graduates from K in a few days. He is BEYOND excited and we are, too. And yet so much still needed to be done. But whatever needed to be done I was looking forward to a lazy and family chill weekend.

But then all of a sudden out of the blue Grayson developed a fever late yesterday (May 26). We had agreed to keep it a chill weekend and avoid crowds bc G had a near fever type episode last Sunday and into Monday May 20 and 21). What worried us more was how lethargic and pale he had become in a matter of hours. Unexplained bloody noses occurred. Things that had not happened in over a year. Our clinic visit that Monday morning told us his counts were great regardless of how he presented.We were to monitor and call if things got worst. By dinner time Monday he was his old self acting as if the crazy worried thoughts his parents had loomed over the past 24 hours had never been a part of our week. Cancer can be frustrating that way. Not G's fault at all. But as we have learned cancer plays games with you. It can make you upset to interrupt the little plans you had in mind or even the no plans. It doesnt matter. The fear of a ER visit  and 5-7 day hospital stay as you wait to see if there will be more symptoms or an increased fever ruin your entire mood. Charito and I get on edge and stress out even though we are trying to hold it together and calm in front of the kids. So we hide it as best we can, playing with the kids, rushing to get through dinner so that we can maybe have a meal together in case its the last for a few days during a hospital stay, cuddling, laughing and dancing. Trying to soak up the moments as best we can trying to think positively when inside we want to scream. And it didnt help that as my week ended I was dealing with other cancer news from friends or running errands for friends who are about to start or complete their own treatment plans. I may be doing these tasks for shitty cancer reasons at the core but inevitable it is my own therapy as well. Helping others and being there for them during their own fights makes me feel not so weak, like an invalid at times. It is the best distraction in the world, not to mention fills my heart to do for someone else. Pay it forward so to speak.

So this out of blue fever continued for a few hours. He became whiney and did not want to be touched. After 2 hours I gave him Tylenol and decided if that did not bring it down I would call oncs and get advice. I ran to Jewel to get him gatorade and cheetos and anything he would be willing to eat. He wanted nothing to do with any parental request at this point and I was going to try anything-I even whipped out the fruit snacks (aka rot your teeth candy disguised as fruit otherwise forbidden in our home unless used as a bribery item). When I returned home there he  was in the basement playing with trains with some perk in his step. Def not the child I left behind as I braved Jewel on such a big holiday weekend. That was good news but of course Charito and I could not relax. We anticipated what the night held.

He slept the whole night through with no fevers and woke without a fever as well. He has been somewhat irritable yet with some pep in his step so far today. But we are not letting our guard down. His lips seem slightly pale. His mood is pretty good though. He asked if he could wear his super hero cape that Areum gave him and who would tell him no. And that prompted me to make our own DIY capes for Triston and Caden. That is how I will spend our day---letting my lil superheros tote around, dream big while Charito and I and wait....

and in case you were wondering...no, I did not get to see my family today. Poop on you, cancer.

pain

I don't want a lot of this

My clown

G has been feeling really great lately! No big plans on this Saturday  other than participating in the "little things" like Target as a whole family. G thought this was pretty amusing today as we finally made it toward checkout ( I swear them kids wiggle something out of us in that damn toy aisle almost every time! At least they understand their numerals and today we explained it had to be under $5!). I laughed out loud, literally, as that boy has never seen them that big in our home! I snapped the pic right away. I love his sense of humor. He ran to them, called to me and yelled "Hey, mom look at these. They're funny!" Ha! His head is as big as one of the cups!

Yes, buddy, yes they are-especially when your mama cannot speak from experience!
I swear , when they get older one of them is undoubtedly going to ask "How the hell did you feed us with those?!"

More March hospital stay pics

 fishing for dolphins (yup, he caught mama a dolphin!)

 a volunteer brought him a blanket and pillow pet. Was one of those wierd signs, even though from a complete stranger who knows nothing of him, he received a train blanket with other characters on the reverse.

 rememeber way back when (around diagnosis time) when at 22 mos he would let someone know he liked them by playfully giving them a bee sting? Whenever I see a bee I think of G, then I run!

Loosening the cancer leash

A few days ago Grayson had his first playdate AWAY from home! This picture says it all. That pretty little girl is M and she is the sweetest, most well-behaved little girl. Grayson sees her often when we pick up Triston from school. She is the sib of one of Ts classmates. After a few discussions over a yr ago with M's parents we realized T and M's bro were in the same baby classes at Gymboree at 1 yrs old. Small world. I knew they looked familiar when we first entered prek. Go to find out we have tons in common and they are absolutely the best family to get to know. You know the type of fellow mom you don't have to think of things to talk about bc the conversations just flow right into each other? That is the kind of friend I have in Ms mom. And to boot-M and G will be in the same class next year! G adores her and asks me everyday if he can go back to her house. And from what I hear the feeling is mutual.

Leaving him at their home was not as hard as I thought it would be.It was actually a bit surreal. But with baby steps we are slowly preparing ourselves for our "fragile one" to be apart from us for school  in the fall.  I completely trust Ms mom. She is as detail-oriented, worry wart and watchful as I am and she gets me and Gs needs. She kept me up to date w texts while Caden and I had our own alone time. I couldnt have asked for a better situation!

There are so many more play dates in their future! How lucky is G?!

And while G and M played Caden and I spent some time together.
I fixed myself up with some Starbux and grocery shopped in slow motion. Not my typical run in and out pace that I have become so used to these days. I shopped like the days when it was just baby Triston in the cart. Pointing out all the learning opportunities a grocery store has to offer. Caden does not get much of this and I loved that we could take advantage of it. By the way, I have such a sweet obervant boy!

 He picked out the flowers and loved smelling them. A few mos ago he wouldnt even go near flowers, something about them scared him.

Insisted on Doritos and luved on them like crazy!
It was a wonderful day! Thank you, Ms mom! Especially for putting me at ease!

Wishes

I won't lie. I have been in a nasty funk for a while now. March's hospital visits did not help one bit!

It's just that in so many ways I see other people's lives moving forward in positive and exciting directions ( and I am very happy for them bc they SO deserve it) and we feel stagnant all too often. My usual disclaimer hasnt changed....I still cherish every moment I have w my boys and I know there are families suffering harsher paths than us but some days (or months) are harder than others for me. To each his own.

I have 3 big wishes:
1. A cure for cancer. Not much to ask in my opinion!

• Childhood cancer is the number one disease killer in children.
• There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
• The National Cancer Institute's (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
• The American Cancer spends less than 70 cents of each 100 dollars raised on childhood cancer.
• Cancer kills more children than any other disease, more than Asthma, Cystic Fibrosis, Diabetes and Pediatric AIDS combined.
• Sadly, over 2,300 children with cancer die each year.
• Every school day 46 children are diagnosed.
• 1 in 330 children will have the disease by age 20.
• Cancers in very young children are highly aggressive and behave unlike malignant diseases at other times in life.

The Children in our lives deserve more! They ARE our future.


2. To be a stay at home mom one day. This IS the best thing I am good at. And as the years pass by I dislike my job more and more. The many hats I wear is wearing me down. Some days that Superwoman feeling doesn't even hit surface and I am just angry at the world for all that I had to accomplish in one day. Other days I amaze even myself. Ironic, huh, how there are moms out there who would give anything to work instead of being home?! We all have our niche. But in the big picture I do know that my job is a means to end as C says.We wouldn't have what we do or be able to enroll the kids in the "extras" without my job. AND thanks to number one I NEED to work for the insurance to get us through the countless years of cancer maintenance ahead.  The other need to work leads to number 3!

3. A bigger home. A home that signifies a new chapter, new beginning in our life. Putting the rollercoaster past behind us. A cause for excitement for the kids as well as C and I. A play room for the kids, my own creation studio, space to be all around and not on top of each other. Again, I know there are people who JUST want a home instead of a condo or apt. We all have our wish lists dont we?
But until then I finally had the time to do some sprucing up to improve my mood of our current home (thank you Spring Break!). Not to mention a few crafts the for the kids and I. Who doesnt love Michaels craft store!

Whenever I see a home I like on the exterior I picture that episode from Jon and Kate plus 8 where they moved into that overly expansive home and the first time the kids see it they run around like with excitement like its an amusement park. I want that overflowing feeling for my kids and even C and I. That, this is gonna be great, feeling. One day.

Until then....spring  break allowed me to accomplish a few things. Crazy how I was a true beast the week leading up to it. I know I yelled from the time we got home from school and the time they went to bed. I just couldnt control my stress. I took it out on the wrong people. I was feeling so deflated that week.

But WOW what a break will do. Saturday the first day of break I spent cleaning all day. I finally got around to hiring a cleaning lady to help me out. She tackled the ugly stuff while I dusted and organized. 12 hours later the house was cleaner than it has been in 3 mos.  By Sunday morning I started it out right.Yoga, crafts and lists of things I have been meaning to get to. By Monday I had already accomplished so much! The rest of my days so far have been play dates and snuggles.
But I made the time to spruce up the home we do have and enjoy myself in the little things.
This wall project has been in my head for over two yrs when my mom bought me the overpriced wall paper at a steal (gotta love target employee discounts).

BEFORE:

This has been above our bed since we moved in.
I took the wallpaper and covered blank canvases. These are so cheap from Michaels and love how versatile they are. I have even given the kids blank ones to use as free expression and produce our own gallery art pieces. Luv it.
Then I found this rub-on quote months ago and fell in love.
  Real Love Stories never have endings. 
I stood in the middle of the aisle reading it and almost cried. At a time when things were once again stressful I was reminded of the center of my calm. My hubby. Our love brought us here and will keep us here, going at it as long as God intends. And for me that is forever.

My little helper

But when the blue wallpapered canvases faded into the wall I needed another plan. Once again the center came to my mind-our love brought us our kiddos. Who doesnt like going to bed with a reminder of those beautiful faces created by only you?!

The blue canvases looked better against my green walls anyway!

The 3 kids got into some of the art using their fingerprints to create cherry blossom trees. Triston wanted to add Japanese characters to it so he looked up the meaning for peace and future and drew them on. 

Then we snuck in one more craft for the kids. I have been wanting a seasonal wreath for awhile now and finally did it.

I placed the hot glue gun on each egg and they put them on the wreath. The flowery garden didnt seem to be enuf for me so I added lilac ribbon. They love that they helped and it really pops on the doorway!

 Truffala tree

Rainbow art ( G called it his rollercoaster of rainbows)

The rest of my break I intend to do some more blogging, relax, shop, yoga, spa day, hair day, some time with family and be a better mom in a better mood. I will eventually get to the homework in my work bag....

March AGAIN update

PCR came back negative. Cultures inconclusive at this time. Appears to be a virus strain he was hit with. But he is all better. Dont know what counts are yet. Going home today sometime. Still unsure of discharge directions.

But last night was typical cabin fever G when he is feeling better and napped for a long time during the day and becomes so overtired at night. One minute we are bantering over no TV bc he was screaming at me to play a loud game at midnight and the next hes crying to cuddle with him and have a snack. So we cuddled and at goldfish and salad and said "cheers" with our styrofoam cups of cherry pepsi. Then he nestled in my arms and kept telling me that I am 'the best mom I ever have' and how much he loves me. That kid gets me every time!!!

Caden has been busy wreaking havoc on the house. Doing some potty while I was gone which I love. Climbing on the dining room table to get M&Ms. Refusing to stay in his crib unless he absolutely exhausted. Cant wait to see what I come home to!

T is home from school again today. I just wanted one more day for him so that he didnt infect anyone. Hes had no symotoms since Sunday. But he did break my heart a bit last night. He called me near midnight crying. He had a nightmare that I was in a battle of some sort and instead of finishing or after the battle (hard to hear him) I went far away. I assured him that I was so close to him and reminded him of our route to the hospital and how close it is. I told him how wonderful it is we get to do facetime on the phone, share pics and texts and talk. He calmed down. But it was clear the dream portrayed how much he is missing me. I cant wait to see that boy today and give him a tight squeeze lasting up to five minutes or more and hand him a shamrock shake. We have been seeing the "I love you, I hate you" commercial for weeks now and havent indulged yet. I hope we get out of here early enough to get most of the day w my boys before I have to prep for work mode returning tomorrow.

 Ugh. I hate this.

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

March ramblings

As I loaded G into the car, the sleet pelting me in the face, I actually didn't mind it. Yes, I was eager to get home but I didn't mind the pain. It was a rude wake up call to the outside world I hadn't seen or felt in 6 whole days. And yet it was more than that. It was both refreshing and torturous at the same time. I felt like it was some device whipping questions left and right inside my brain. Then piercing my heart every few seconds. With one breathe it reminded me that we made it through the hospital stay in one piece.He was amazing as usual and made me proud.  The other teasing me with words like "you think you can survive this all don't you? He will but you won't. Don't you know that. You are damaged beyond repair".

No doubt I was feeling crippled, exhausted and running on empty once again. This journey is so grueling. On my heart, my relationships, my marriage, my parenting skills and my existence. Most of the time I am positive and whip the negative thoughts to the other side of the universe never to be seen or heard of again, but in this moment I was drowning. Such mixed feelings about how to move on each day or every few weeks when each time we pick up the pieces and things look like they are turning the lonely corner something comes up. A death, a family member in the hospital, losing a job, a new diagnosis, low ANC or someone is sick again. The good outings (Jewel, Target, car show) come in spurts literally weeks apart from each other. Cabin fever and bad moods dont mix well and it is getting old really fast. No one is happy for too long and that mind set affects all of us. It is even getting difficult to remember when we were ALL healthy AND happy all at the SAME time. And even when we do get through all this and say goodbye to his last day of treatment will I be so beat down at that point that I won't know how to move past it all? How much of me will I be scraping up to just celebrate the fight and plow through the new chapter of OT (off treatment) and the fears and challenges that come with that. You know research has confirmed that the parents of fatally ill children suffer from post-traumatic stress disorder ? Well , duh!!!!! Ya think! Moms in general never turn off their worry brains no matter how old their children are. What do you think happens to a parent of child that survived the unfathomable and is expected to proceed with a "normal" life when nothing has been "normal" for years? Its not like a switch you just turn on and off. I know it may seem like alot of "stop worrying about the future " kinda stuff I am spouting out but seriously sometimes I have to just give a hint of worry to the beyond instead of the day to day, especially when the day to day hasn t been so pleasant lately. Some days we have to give into the tears.

And then you have the times when Grayson looks and acts perfectly "fine" and yet his blood says something else. ZERO ANC seriously?!!!! We have never been that low for this long. It is TOO scary to be on hold for any and all chemo drugs for two whole weeks. Ironic huh? As much as you hate the poisons entering his tiny body on a daily basis,  ready to dive their nasty side effect teeth into his neurological system any day now, you begin to thrive on them, depend on them to keep him cancer-cell (blasts) free. The last thing we want is to give them bastards a break and think they can start reproducing all over again without us knowing. I don't know how I would handle a relapse at this point. I am ever TOO eager for his next spinal (lumbar puncture) to be sure they are not floating around his spinal fluid making their return. They better read the DO NOT ENTER sign on the door or I will lose it!

But through the muck there is always something funny on the surface to flip the table over and hard. And, as I have commented before re Caden's guardian like, lighten the mood aura that is all he is, it is once again Caden who is guilty of projecting the smiles onto us. He, too, will not let me take a break. He knows how to keep it real and light-hearted. That precious, wild, curious boy of mine. Too much in a hurry to grow up. Doesnt he understand I already feel like I miss the first 6 mos of his life to begin with?! It is like he reassuring me that there will NOT be anything to miss this time around. He always seems to keep things interesting. My little Rice has gone pee in the toilet 5 times since December. The past two times have been in the past two days. I have been allowing him to go and do whatever whenever he wants bc he is merely copying the bros but the past two incidents have been purposeful. He calls to me, claims 'pee, pee' from the stairs but I guess I am not quick enough and up he goes. I get up there to see him doing his usual routine of lifting the seat , placing his potty seat cushion on top of the seat and then it's up to me to get him up there. The recent occurrences he is literally dancing a jig to get on there. In the past if he accidentally peed while performing his copy my bros routine I gave him a mini M&M as a treat. As he peed the past two days his eyes were on that prize waiting for his fav chocolate. He is too damn cute on that ugly throne I tell you. Too tiny to be sitting up there on his own. And today he was so excited he would try, come up dry, wipe and flush anyway, walk away naked, say something to T, and run on back to me for another try. By the third round he went pee and just smiled. And the way he looked at the boys instead of me with pride was priceless.I love that kid. So he left me no choice but to bring the Toy Story potty seat into the living room in case he is super serious about this. I need some option that makes this easier on MamaC. We will see. But boy does he know how to shake things up. No more diapers was my goal for spring break (not like we got anywhere to go) and here he is pushing it up a few weeks. Yikes.
Oh and did I forget to mention that MamaC found him outside of his crib when he woke from his nap today. She heard him 'reading to himself' and when she went up there, there he was on the floor playing all content, injury free. Seriously! Another goal I was hoping to save til spring break or summer. Now we are not sure if this is something he will attempt again and thank goodness the bottom half of his dutch door was closed or she would have found him standing next to her while she was doing the dishes! I am not willing to wait too long for an injury that is for sure. A broken bone is not on my list of things to care for in the next few days. We never met this stage with T and G. T was more than ready at 18 mos for a big boy bed and G transitioned at 20 mos. We avoided those climbing/falls all before they even occurred bc I was so scared. So guess what we are doing this weekend? Like I said, was hoping to save this transition for a time when I didnt have work to get up to in the am bc we all know that as exciting as the new bed may be most of the important people in the house dont sleep too well that first week of the transition. My boy who has been getting dumped awake and putting himself to sleep since a few weeks old is not going to be so kind this go around. It just wouldnt be natural. Yes, it is all exciting and I love that we are following his lead but the time isnt exactly convenient. But when it comes to developmental milestones I am a firm believer in following my kiddos' and thier intentions and I have never been disappointed. We shall see! All I know is that sleep is overrated! (and so is sanity!)

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.