THE BIG 2!

Building his taco-his bday dinner request.

I have to say it was not the most exciting bday for the family but G didn't seem to mind. At this point in October Charito and I had pneumonia. T had an ear infection and C was getting eye drops to prevent an eye infection bc I was freaking out about pink eye in T's class. There was no energy flowing through the house other than T n G's. The plan was to sneak out with T to drag my sick butt to Toys R Us. I so did not want to leave the comfiness of my home but I was determined to make it out for a bday present for my lil man. As T and I snuck out G whined to come along. Of course, he could! How was I to turn him down when it was his bday afterall. I think I was in that crazy busy place for almost 3 hours! Primarily in the Thomas aisle, of course. Over $200 later and we were headed home. I never thought in a million years I would spend that much on Thomas (remember how much I didn't USED to like him n all his pathetic friends?) but things have changed.

The rest of the day was low key. Naps. Taco Bell. And a candle in his Oreo cookie bc that is all I had energy for. Guilt was all over me that day but I just couldn't muster up all the mommy goodies I had in store for that little boy.

The boys had a great day as far as they knew. They were content and smiley and playful all day long. Total brotherly love. It was the best thing out of the day seeing my view from the couch gave me a front seat to it all.

The worst part of the day for me-I didnt get to share in the low key festivities with my family at all. We couldn't expose them to our pneumnia and other illnesses. And the only reason Mamac n Titamel were in on the action is they just happened to stop by as we were blowing out candles.

It was difficult for me. I was grateful to have what I did in that candle-lit moment but felt like I was missing out on so much more. Like I was living my bday vicariously thru G's moment. You just couldn't help but wonder.

The rest of October (which I dont even recall if I ever blogged about) was spent recovering:

The day after G's bday (Monday, Oct 11th) G slept the whole way to treatment. As he woke he all of a sudden sounded horrible. That was true wheezing without a doubt. He was NOT like that the day before, not even before he went to bed the night before. They immediately ran a chest xray. No fluid-thank goodness-no mommy n daddy's pneumonia. But his lungs were inflammed. We tried a nebeulizer treatment but it didn't improve much. I could tell on Kwon's face he did not know what to try next. Belmonte was paged right away. They were not sure if he would even respond bc he was on rounds in the hospital. Nurse Jennie placed GRAYSON in the page. Within minutes Belmonte called back and said to meet him down in his department in 10 minutes (Have I mentioned how much we love this man?!). After seeing Belmonte he determined that the chest xray indicated a respiratory infection tweaked even more so with G's asthma. It had returned. We knew it was more of a seasonal thing but did not think we would have to deal with asthma meds again til winter. Well this respiratory infection with the asthma component made all this sneak up on us overnite. So we left with a 4 day steroid to kick the infection's butt and were to continue his asthma meds until the weather improved (Spring). We needed to return the next day for Belmonte to listen to him one more time and see if it had improved even the slightest overnight. It did a bit but he was still wheezing. The steroid we were given did it'sjob by the end of the next day and the wheezing was gone by Wednesday. Belmonte even called Friday to check in on us (He is so good to us).

That week I had been to one or more doctors 5 days out of that 7 day week, including Saturday. Whether it for a kid or myself. It was tiring.

Other than the drama of G's respiratory infection and spending all of Oct nursing ourselves back to health it was an uneventful weekend. The weeks flew by. So fast and with so many germs that I did not see anyone from my side of the family until Oct 29th. Amy and Ayden were able to visit. It was much needed. I saw friends only bc they took on the duties of taking T back and forth to school. And we saw Mamac n Papac n Titamel bc they often dropped by with food or cleaning assistance.

And considering he had a respiratory infection that could have dangerously spiked to pneumonia having two parents carrying it and whatever other germs our house was breeding, G's numbers were surprisingly good that month. He only needed two transfusions-one early in the month and one later in the month. At one point his ANC was over 2, 000. Awesome. It was numbers like that that convinced me it was ok to take him to T's Halloween bash at school, shopping at Carson's (I may have boys but they really do love to shop! I taught them well!). His weight hovered around 19.5. It was a really good month in my eyes, even if it ended with a hospital stay. It was to be.

G's Taste buds that month-a whole lot of bologna (this baffles me bc the only way I could eat it as a kid was with miracle whip n lettuce and my kids eat it plain-gross), broccoli (yay, finally able to get more veggies in him. I gave it to him until he was gonna tell me he was tired of it! He still is eating it almost every other day for almost 3 weeks now), yogurt, cheese sticks, ham, and Lance Variety Pack of sandwich crackers, chocolate goldfish and the most recently discovered bread w/ mayo n ketchup. He didn't care for any mcds. Milk was still his number one drink.

So grab your glass of milk and let's cheer to a healthy-every-member-of-the-Carper family in November. CHEERS to that!

Changes contd

As you have read I am keeping a food journal...here is his latest taste toppers!

He has not been on steroids for almost 4 weeks so that hunger streak of a full meal every 45 minutes has not peeked its head this week. He still grazes all day long w one or two of the grazing periods completing a "full meal" over an hour or so. Everyone involved is happy w that food report. As much as I try to sneak in veggies and fruits (he will eat them periodically depending on the type) it is still most important he eats. He still sticks to his milk preference but I was able to spoil him w some pop this past week to shake up those taste buds a bit.

He still asks for hot dogs out of habit but doesnt even eat it when I make it. That then transpires into a sausage link of any kind though-a taste that has not subsided since steroids.

Newcomers this week included plain slices of bread, popped popcorn, plain white rice by the handfuls (Asian not Uncle Ben's, sorry San Fran), and anything else w dip. NOT ketchup this week. We have slid our way to Ranch dressing. It was disgusting for me to watch him dip his strawberries,apples and sausages in it! And he continues to love those sodium rich crackers-and of course, its not the cheapies. Its the Pepperidge Farm Selects sun dried tomato, formaggio cheese, garlic herb, etc. Pretty much mommy and daddy crackers. He is not liking cheese, raisins, yogurt raisins, cranberries-things he couldnt get enuf of 2 weeks ago. I am currently watching him dip his pepperoni pizza in ranch and I dont mind it at all. It reminds me of Monicals at EIU and I miss it!

I finally asked today if my triumphant opportunities of getting a veggie or fruit in him are even worthwhile. Does his body even absorb the vitamins I would typically be pushing on my kids or do the "poisons" of chemo cancel it out? The answer was yes, his body does take it in. So our plan of action continues to be-slip them in when he is eating anything and everything and isnt even looking to see whats in front of him (typically steroid times);be happy when he eats anything at all; and push fluids when food is not even staying down.

As you can imagine this makes for interesting menu plans at home. I used to tell T (bc my mom used to say it, "This is not a restaurant! You do not get to pick anything you want to eat for dinner. I will not cook 3 different meals". Well, I feel like that is exactly what I do w G. His tastes and moods change day by day and it is hard to keep it all straight. It makes it even harder when we actually do go out. What to pack for him as far snacks? I just bring TONS of options and hope I hit on one of them!

Unfortunately we cannot consider vitamin supplements to aid his diet and proper growth. They conflict w the medications and chemo. At least he drinks plenty of milk! But I found out today that can often lead to iron deficiency so we will deal w that when need be.

I also expressed concerns with his teeth. He barely tolerates teeth brushing nowadays. He used to enjoy chomping on that brush and moving it around mimicking T but not any longer. Rarely he will do it and thats if he even tolerated the shower or bath which used to be enjoyable but leads to an even bigger wrestling match (he did bathe w T Sunday morning w no hassle and brush his teeth his way-a first in WEEKS) which is how the routine used to be. Wooh, that was a long sentence! They would take a bath and then sit on a towel together giggling and brushing their teeth and then taking turns spitting into the sink. The buildup of plaque is soooo noticeable. And the more I read I find that the chemo can really do damage to proper tooth development and hygiene. I know your prob thinking whats the big deal-he has baby teeth? Well, those baby teeth and the effects of any mouth sores and gum irritations will impact the next set of teeth and how well they come in. Chemo Kids typically have many dental issues in the future. If I can avoid this I want some solutions, options, alternatives.

T has a dentist aptmt Wednesday and I was going to at least have G sit in the chair to become familiar w the environment. T had his first dental visit at 2 and I want to get the ball rolling for G. But chemo puts a damper on that plan for awhile. He is so susceptible to bleeding and not clotting quick enough that we have a hold on any dental visits. And in the future his doctors will require advance notice of any dental visits in order to pump him w antibiotics and determine if his blood numbers are even good enuf to sustain the exam. So for now I will let G sit in the chair and meet the staff. Nurse Megan gave me some flavored sponge brushes to use along w the washcloth wiping I have been doing I (she was so great, as soon as I mentioned what was on my mind she ran to the hospital floor and grabbed a handful for me). These sponge tips should be much more sensitive to his teeth and give the same effect of a toothbrush. Ironically, (once I saw them) they are the same tools my speech therapist friends use for oral motor exercises. So, now I know who to go to for the cheapest access to these babies online! We will try them tomorrow when he is not so tired and see how it goes.

Well, he is done eating his pizza w dip and playing playdoh. I am ready to get these kiddies to bed. Til next time!

Pre LLS Walk

I am tired and scattered and all over the place w my mind tonight. I dont care about grammar and punctuation, I am just rambling....I have the right to tonight.

Tomorrow is the Leukemia and Lymphoma Society Walk. I am so grateful to the many contributions! We have raised over $1, 000 for team G's Choo Choo Clan! Our friends and family are amazing. So many people who organized their own fundraising page and actions. So many people donating from afar. Thank you! Everyone of you will be in my thoughts tomorrow and always.

I received a typical email from LLS yesterday afternoon about the 2010 Heroes, an advertisement and devotion to several cancer survivors. I clicked on the video thinking it would be a happy go lucky feeling. And it was, but it got me. It was the first time in many many weeks I cried over what could happen to G. What he could look like and put up with. Even though these beautiful children and adults beat the odds they still went thru hell to get there. It hurt. All this while I have been riding this shadowed road of treatment. Going thru the motions, doing what they tell me to do and when and where. Waiting for this or that. He is just sailing thru. It is such a fuzzy feeling that is gonna scratch and scrape and cut and bleed at some point-when? I havent really let myself go there bc I he keeps me going in the positive ( and I am not talking about death people bc that just isnt an option for us, I know it deep down). I dont picture him like most of those videos and pics and stories you hear bc it hasnt happened yet. And I have been told that it is possible for some kids w ALL to sail thru so seamlessly that the only lose their hair and have vomit fits and all the other things you have read about that G has experienced thus far and that is it. They just deal w it that smoothly ( I use that word loosely, please! None of this is smooth but you get my drift in the big schemes of things, the spectrum of it all). That could be G and I have to give him the benefit of the doubt that his body may simply react in that manner. But I am very well aware that it may not. Believe me, I am real about this and know it may happen any day now but it is only fair I embrace what great things he is showing me. And hope for a continuation. Yeah, Alysa I am liking and living that word HOPE these days. Your writings alone have opened my mind to it endless possibilities and fortunes. Thank you, friend.

Like this week-another great week! We actually attended a bday party today. Mainly bc it was outdoors and less germy, but it was still a great feeling. So great to see our friends again. I have been so out of the loop. He was shy and clingy and moody at first but after a bit he was a normal 2 yr old playing on the playground and chasing his friends. Having a ball w daddy and eating bday junk food like everyone else. He truly lit up that park and there wasnt even any sunshine today. With his smile and I am here and dont you forget attitude. He was the sunshine for daddy and I today. But it was wierd. Being at our first public event. My first public event. Yeah it was just a kid party but I couldnt help but think-who knew bout him? Cancer? Our past 8 weeks? Its funny how people ask how old Caden is and how I am feeling and how good I look. If they only knew. I know its what people ask when they see a newborn. I dont blame them, I do the same. But to know that there is this whole other side to our upside down life that makes those questions disappear in meaning for me. They care and I appreciate it but there are bigger things on my mind. I finally knew how Charito felt when he told me about those first few days back at work after our week in the hospital. People dont know about G. They congratulate you on Caden. And you put this fake smile on and nod nod nod bc deep down you ache for your other son. Of course you are over the moon for your new son but life isnt as happy and perfect as people think it would be w a new addition to the family. I truly cant describe it. We live by a totally different dynamic these days.

And thus I have realized that I am scared for tomorrow. It really was not until I saw that video. Tomorrow is an even bigger public event. One amazing event w everyone there for the same reason, a grand reason. But a reason I wish I wasnt apart of. I am actually dreading it. I am so fearful of the emotional toll it will have on me. Whether I am prepared for it or not. I have always been proud to attend this LLS walk for our dear friend R and her overwhelming and triumphant fight. We have been attending and donating for several yrs now. It is this walk that brought my love for Gallery Park to this day. The irony in knowing that I dont think of Gallery Park as the LLS place anymore. Each time I have been past there in recent weeks the only thing I think of initially is how T n G n belly C and I were there 4 days before C's arrival. Those wonderful pics I have of the T n G running thru the sprinkler. Me letting go of my freaky clean fears and actually letting them play in that sandbox for the first time. Me rubbing my C belly and picturing our lives as a family of 5 in a matter of days. Watching T n G run around and giggle w each other while I ponder how many days remain of just the two of them and our lil G actually becoming a big bro. The day ending w/ a smiley, giggley picnic and ice cream. I picture that tree we sat under w ice cream bars dripping down their faces and the two of the laughing at each other, thinking one was messier than the other and neither of them caring bc the yummy completion of that dessert was the highlight of their day. That was the last mommy date I had w my T n G before C entered our lives. It was so magical and it seems so distant and from another world now. A world I feel like I cant go back to, never return to. I hate that feeling.

So, yes tomorrow has me feeling very anxious. Within seconds of watching that video I saw how real this walk is to us. Not that I was living in a pretend world. A world of denial, not me. There is nothing fake about what I go thru everyday. What is happening to G's body everyday. I have just been holding on to the simple silence of the terrors that have not fully invaded his body or our home yet. The terrors and demon-like symptoms that have lied dormant to date. I have the right to enjoy that silence while I trudge thru the other monsters we have met so far-treatments and meds and diarrhea diapers and a flu of 50+ days and full on kicking and hitting and screaming fits and mood swings and exhaustion and limited this and that all bc of what NEEDS to happen to him in order for ME to get my old Grayson back. My old life back. Those same questions, the only questions that Charito and I sobbed to each other over and over again the night of diagnosis-What are we gonna do? Our lives will never be the same? How are we gonna do this? No joke-that night those were the only words out of our mouths as we sat alone w a sleeping child hooked up to equipment we never thought we'd see in our lifetime. A place in time no mother or father deserves to be.

Up until yesterday I just looked at this walk as an event we are now a part of ourselves rather than just supporters of. I always got teary eyed at the walk in past years but what now? Before yesterday I looked at it like this-We would attend, turn in our wonderful donations, smile for our lil guy who is doing big things, praise endless thanks to our family and friends, walk the 2 miles that will seem like a simple parade to my boys and head on home for a good night sleep. It is an event that we would have attended otherwise for R, but weeks after our diagnosis I felt obligated to attend for G. Like a guilty feeling. Like I wouldnt be doing my cancer family duty if we were not a part of. It felt forced. But tonight I KNOW it is what I need to do. We need to do. So that no other families in this world have that night of sobbing questions, devastation and heartache like we did. It is not fair that I am there tomorrow but my G will put it all into place for me. I just have a hard time confronting the faces of those that have been on this evil journey longer than we have. Seeing a glimpse of the paths we may have to take in the future. And of course when they offer up their prayers to those lost to cancer having to toss aside that horrendous thought. I just hate feeling so insecure all of a sudden. It hit me like a brick wall in the past 24 hours. I dont want to fall apart tomorrow. I know I am due but...I know we are all human but...I dont know. I cant explain it. I like just going about our business in our new routine of a medically consumed life and sucking up all the good moments and burying them in my forever file in my head. I am content in our lil private world for the time being. I will open up to support groups and other ALL families when I am ready. I KNOW I am not yet ready to do that . I am sure it will be when things take wicked turns but for now I cling to my slow turns and hold on tight. I am sure as nervous as I am I will see the good in the evening's events, just as I had in the past. I know in the end it will be a great night w the most unforgettable family and friends beside me but still. Its cancer and it sucks. It has literally sucked so much from us already I dont want anymore and I know there is SO much more coming our way. I cant tell you how uneasy I feel when I have to mention or even think the words-8 weeks into cancer. I cant believe it has only been 8 weeks. Seems so much longer. Like I said, like having lived 2 separate lives already. 8 weeks...That has got to seem like minutes to those who have been fighting for years. But seriously-he is not even 2!!! I know cancer doesnt care what race, financial status, family lifestyle, or age you are-it just chooses you. But turning 2 in couple weeks----Seriously!!!! AAAHHHH

I know that my family and friends will get us through our day tomorrow. They wouldnt be attending/donating if they didnt care from the bottom of their hearts. I really know that. Please believe me. I just have to come to the realization that this is a cause and walk that we will be attending til I die. And I despise that feeling, that fact. But, Charito will have to push me in my wheelchair at the ripe old age of 102! I will let you know after the walk if I fell apart. Or if the crumble effect that is bound to happen in me is still lying quiet and sober, waiting for the ulimate moment to wreak havoc on me.

But please know that I love you all and your thoughts and encouragement are never forgotten. You are our added fuel to this fire we call cancer and a fire we cannot wait to put out. The day cannot come soon enough. The day I feel like I can breathe again. Thank you, beyond words. I swear when this is all over we will create the biggest celebration anyone has ever seen. The world will know, Grayson will know what IT is he conquered and the life-long relationships that helped get us there.

September 20-23 Monday thru Thursday

Another good treatment day. Of course it started out rough as usual bc of the absence of food or drink in preparation of the spinal, but as soon as I mentioned Jenny's name and allowed him to bring the ENTIRE bag of raisins and the specific plate he wanted we were good to go. Can you tell how hungry he was when we HAVE to leave the house w those items?! He would not let them go in the van. He didn't even mention Mcds on the way. Shocking!

Good numbers. A bit of a surprise tho-I thought for sure he would need platelets seeing as that cough was miserable Sunday morning. We thought for sure at least that number and his neutrophils would have dropped when you take into consideration fighting a cold for over a week (a chemo drug induced cold but a cold nonetheless). Both numbers fine.

Hgb: 8.4 as opposed to 9.1 last week (they like it over 8. Will he need a transfusion next week then?) Again the game we play!
Platelets: 117 as opposed to 194 last week
ANC/neutrophils: 1, 130 as opposed to 1, 200 last week

He weighed 19.4 last week and clocked in at 19.2 this week.

Overall, everyone was pleased.



Triston was home again with that wicked cough. No fever since Sunday. We just had to make sure the virus stayed w him and did not branch to G or C or even Charito n I.



We were also told we could use his asthma med when it appeared he was wheezing at all. Kinda hard to tell when his throat always seems irritated and his voice sensitive at times from all the screaming he does (happy or mad screams). But at least its another preventive measure from pneumonia which he is very susceptible to.



I am happy to report that I made it home vomit free! I made no stops this time! During that half hour he needs to lie on his side immediately following the spinal I gave him those raisins that ruined his morning. He also ate some sunchips and drank some milk, I wanted something in that belly before we left. And it was so nice to leave on a Monday WITHOUT his port in access mode. G even said to me as I buckled him in his car seat, "Mommy, no tubies!" I replied w a smile "Yup, honey. No tubies today. Only port." It was too funny. How young but aware he is. He is taking it all in and that memory of his has not wavered in the least.



He also nibbled on some odd foods that day. He asked for bread. I questioned whether he wanted toast or a sandwich. He made it clear (LOUD and clear) it was to only be a slice of bread. And then I watched him walk away munching on a whole slice of wheat bread. Odd to me but maybe no one else?



Tuesday

These have become habitual lazy days, I dont like to go far in case chemo catches up w us the day after treatment. I take care of laundry, prep meals and snacks for the week and attempt to clean house. It truly has been the least of my worries. Just take a step inside and you can see for yourself. I primarily take care of dusting and swiffering to rid the areas G mostly hangs out in of those airborne germs that can harm him, particularly when he is already suffering from a cold. I just have to do it in shifts. Clean the main floor while they nap or play upstairs and then switch since he cannot be around the dust and such while it is being disturbed.



Wednesday

Ha! This day was a joke!!! We woke with every intention to send T to school. He stayed home Tuesday bc he seemed really tired and cranky and I figured one more day would set it straight. Well, the boys woke each other up (G slept in his own bed since he did not appear to be vomiting) at 6:30 am. They came waddling into our room proclaiming "good morning" simultaneously. I wanted to hit the mute button bc I was def not ready to get out of bed. I have not been sleeping well this week (and neither had Caden-why I dont know -what happened to my sleeping thru the nite baby this week?! We went from 0 wake up calls to 2 in the mid of the nite this week). When G approached my side of the bed I went to kiss him and immediately stalled. His nose was bleeding! I hadnt heard him say ouch when he woke. What happened? I asked Triston if he had bumped himself getting out of bed. He told us no. I had kleenux next to my bed so I started tending to it. It wouldnt stop. And if his platelets had by any chance dropped dramatically since Monday it was NOT going to stop. My body remained calm but my mind was racing. What if it didnt stop?! After about ten to fifteen min it stopped. We seemed in the clear. He went to play trains while T got dressed. I brought up their milks and bananas for them to eat in our bed and watch tv while I monitored G's nose and dressed myself. I had intentions to run to the bank and post office so I had to look somewhat presentable.

A few times I would turn and see the nose bleeding again. It was his cold. The runny nose boogers were causing moisture and blood to travel even when it appeared to stop. But I could see it was actual trying to clot bc the blood was darker and thicker (good news considering he has clotting issues as well). This was a game, too bc I couldnt do anything to make G upset or his crying and the boogers would start it all up again. From beginning to end it took about 30 min to get it all under control. Everyone was finally dressed and ready to head downstairs to start the walk to school. All of a sudden T looks at me and says "I think I am gonna throw up", and he did! At least he made it to the toilet! No school again!



By then I was irritated that the day's plans were shifted. But I figured we all feel 110% better the first 30 min after a throw up so now was the time to dash to the bank n post office. They were both drive thru service so the only thing I really had to worry about was a bloody nose or vomit in the van. No big deal, right? I crossed my fingers. We were there and back in 20 minutes and that included a stop at Mcds drive thru for some hot cakes.I had decided I deserved them after the morning we had already encountered!



T was absolutely fine the rest of the day. Other than the cough that had significantly improved since Monday there was no reason he should not have attended school. I really think the reason he threw up was bc he woofed down that breakfast. He was so eager to get to school he just would not slow down. G's bloody nose never returned that day-thank goodness! We read books, watched movies and stomped out a bunch of cat fights between the two of them almost all day long. It was a pretty frustrating day and I couldnt wait for it to be over. I felt like I was on edge all the way up until bedtime and even then I didnt have our bed to ourselves. Two boys snuck in w I love yous and pretty pleases at 4 am! How could I say no?



Thursday

T finally went back to school! He needed it and I needed it. He really needed to get back into his routine and I prayed he would not regress in separating from me at drop off. He did great and I even received a nice note from his teacher saying he sailed thru the day without missing a beat. I was proud of him considering he had missed 5 days of school, 7 if you count the weekend.



Mamac and Titamel informed me last night they wanted to visit this morning. I decided it was a good idea for me to tackle the courthouse for Caden's birth certificate while they stayed w G. I was going to take Caden w me bc I feel like I really dont get alone time w him. So much of my time is devoted to G. But when I left to take T to school (and G threw a fit to join me) Caden had fallen asleep in my absence. I just left him home to take his 3 hour nap in peace.



So off I went to the Skokie courthouse by my lonesome. I kept checking behind me at stoplights to see how w kid was doing..forgetting none were there. I hated that feeling. I truly felt lonely. I stopped by Sears to check on a battery for the truck and they wanted to rip me off so I walked out. Then I happened to be approaching Jerry's Fruit Market up ahead and debated whether I should brave it or not. I hate that place and even more so w kids in tow. I knew it would be stupid of me to pass up the chance to be run over by shopping carts and rude strangers w out my lil army of bodyguards. I pulled in to their crazy lot and hit up the store in less than 20 min. It was a record!



The rest of the day was full of crabbies for G. By the time I arrived home at 11 ish he was so tired. It was one fit after another and I had to force the nap. He did not settle down (and I mean settle down emotionally from crying fits that were over what appeared to be over nothing at all) til 1 ish which left for a tiny hour long nap before I had to wake him to go get Triston. He woke fine bc he heard Caden. He gets so excited to get T from school. But once we returned home the tantrums returned.

He truly does not know what he wants during these fits. And if he does it is over things that are not feasible or of our rules. I will not baby him. And it is hard enough trying to keep those rules when T has to follow them, too. I cant let G have and T not. It is getting much more difficult w these mood swings and his indecisiveness. And I feel so bad bc he truly cant tell you what he wants. NOT bc of his language (that is still totally age appropriate and clear as day). It is bc he DOES NOT know what he wants. He flutters from one thing to the next. Like his mind is on overload. One minute he is luvin you and the next throwing toys across the room. I stoppped counting how many times a toy has intentionally been whipped at T's head. I am sure T could tell you how many times he has been the punching bag. And yet, just as before cancer, he doesnt hit him back. He just tells me and I mediate. Thank you, T!! G has even resorted to full on swings toward daddy and I. He gets angry. An anger I have never seen in my guy. It breaks my heart bc I know he cant control the frustration and impatience levels. All I can do is try and make it better without giving into him discipline-wise.Its a struggle everyday. I cant imagine how that struggle plays out in his own head and body. Maybe I dont want to know.

Poor Butt

We figured out weeks ago that G hates getting his diaper changed bc of the constant interruptions he had to endure in the hospital and the aches and pains he consistently feels. I think being in that position (especially after spinal taps and punctures for bone marrow) and the pressure we place on his legs to hold them up really hurts him. Then add the impatience level he has been inhabiting lately and wallah-full out screaming on the tippy top of his lungs each and every diaper change.

Well, now we get to add a new element to it. I noticed last week (and brought up to Dr Kwon who stated it looked fine and was normal for the course) that there is an area of his bottom that is darker in skin color than the rest of him. I discovered in reading our little leukemia bible, Childhood Leukemia, that there were children who suffered horrendous blisters, open sores and rashes from the medication releasing in their stools. One mom had to create some magic au natural concoction of a butt paste bc nothing over the counter would work.

Just imagine poison going in one end (mouth or port) and coming out the other...I am sure it burns like crazy and obviously is not kind to skin tissue. So that explains the darker skin color and sore he had last week. OTC triple paste cleared that up fast but it has left a scar. And he has bowel movements 4-6 times a day. He sure doesn't complain when he goes and is sitting in it bc he def does not want us to change that diaper. And the smell is unbearable. I fight him to change it right away. 2 yr old attitude then ensues to the max. It makes me glad I didnt have him potty trained 100% before all this bc we would have had some major regression!

I just can't help but think...one day his significant other is going to see him naked and check out this dark stain/discoloration on his butt? How funny! Will it fade away? Or only get darker and bigger bc the chemo drugs are only increasing in potency and frequency. He already has Mongolian spots ( Mongolian blue spots are flat bluish- to bluish-gray skin markings commonly appearing at birth or shortly thereafter. They appear commonly at the base of the spine, on the buttocks and back and also can appear on the shoulders. Mongolian spots are benign and are not associated with any conditions or illnesses. Mongolian blue spots are common among darker skinned persons, such as those who are of Asian, East Indian, and African descent) on his butt we are waiting to fade out. I know this is just a minor "change" in the big scheme of things but a thought nonetheless. I am mom...I cant help but wonder and worry.

But, here's how I see it-whomever Grayson meets and when will be someone with a big heart and see him for who he really is. A man that edured so much but triumphed through it all. Someone that will stand by him no matter what. Someone who will understand the fears that both he and the rest of us have as a family knowing this could all come back to haunt us again, anyday. Only a special person can see that in G and only that type of person will marry my G. Otherwise they will have to deal w the wrath of the numero uno Mommy of Mama's Boys. My Grayson will find that person that makes him want to hang onto life ever more and live it to its fullest. Throw it all to the wind and do it all without hesitation bc life IS that short. I know it, because he DESERVES it all! I WANT him to have it all!

September 13-19-week 7

Monday's treatment went well. The usual spinal w/ methatrexate, vincristine and Ara-C. We were done by 11 am. Good timing bc I had my 6 wk post-partum appointment at the other side of the hospital at noon. Charito and G and I enjoyed a nice lunch at Au Bon Pain Bakery inside the hospital. It was so peaceful. They had a fantastic soundtrack going over the speakers and we watched G just bop his head to the beat and make up his own words. It was our laughs of the day. Just us 3.

It was a little surreal filling out post-partum depression surveys (being honest w each question but noting that my feelings of anxiety and tears and sleeplessness had nothing to do w a newborn and all to do w a almost 2 yr old fighting the battle of his life, our lives) and breaking the news to my doctor about G. His jaw dropped and looked over at him. He was in awe. Of course he mentioned had we known even a week sooner we could have saved cord blood. He was right, But my, how would I have dealt w the news then, days before I was to deliver. I can't even imagine.

We went home with our homework bag of IV meds and hoped there would be no vomit on the way home. We had been lucky so far! I thought too soon. We were literally minutes from and G was singing along to Electric Company in the van and all of a sudden I heard a wierd cough. I turned my head and he was puking. It wasnt projectile-like (thank goodness) but more like with each cough it just poured out the side of his mouth. He had the most helpless look on his face with each cough and release. I couldnt do a thing but listen to it. I had to drive. As soon as I pulled up to the house he started whining. He didnt like it all over his arms and hands and cheeks. It was all over the most annoying, tiny crevices of the carseat. I had towels in the car in preparation for this but he wouldnt keep them on his lap. He kept telling me"No thank you, mommy. No blankets."

I brought him inside and changed his clothes. I couldnt give him a bath bc he cannot get one less than 24 hours after a spinal. He was all wiped down w a damp cloth and set on the couch. I started to put Caden in the Moby to go and get T from school and G started vomiting again. It was all bile. The kid had little in his stomach from 9pm the night before. He munched a little during lunch but not his usual. He was just too tired and distracted. I ran to get T right away and left G w/ my MamaC. He kept at it til 3:30 when he literally just passed out from exhaustion. Luckily I was able to sneak in a dose of Zofran right before he fell asleep. He slept for 3 hours. When he woke it was as if nothing had happened. He was happy, super hungry and super thristy. The rest of the night and week were vomit free! We just kept up w the normal oral meds and the scheduled IV meds that week.

Wednesday night was the Open House at T's school. Even though he came home w a fever it had gone down by dinnertime. He was so excited to show us his school we just HAD to go. He has also been excited to show us HIS church. We went as a family the weekend before and he thought he was big stuff. They have several masses they attend as a class so he has taken ownership of his new surroundings. Since it was my bday Charito picked up sushi on the way home (and a beautiful bouquet of flowers delivered earlier!) and we woofed it down just in time to make it to 7 pm prayer service. T gave us the tour of the school and G insisted on walking EVERYWHERE. He didnt care about the crowd hovering over him. He was FREE. It was adorable. I just couldnt tell him no. We braved the crowded hallways and let him have at it. As we left he yelled for Charito and I in the parking lot. We asked him what he wanted to show us and he said, "GO RUN!", and he took off (as fast as those little legs could take him. He seriously must have thought he was a speedracer bc the smile on his face was enormous! It was another one of those memorable moments of pride for daddy and I. That little man just keeps going. To have his drive?!) We ended the night with a stop to Mcds (anytime we are in the car now G automatically thinks of Mcds. We pick up a dollar fry that he barely eats but it makes him happy. It is now routine and embedded in his head). Everyone crashed pretty hard that night.

Thursday was a low key day. I did receive a gorgeous surprise from Edible Arrangements of chocolate covered strawberries. 24 OF THEM! It was devoured by Friday. I did get a nice visit from my brother Mike as well that evening and finally had time to get thru some bday cards. Thank you everyone for the cards and FB notes!

Grayson's slight cough and runny nose continued through this week. By Friday it seemed more frequent. I took him with me to Triston's appointment. He came home from school Wednesday with a fever of 101.6. By Thursday night it reached 103. I made appointment for same day clinic hours Friday morning. We thought maybe if I ran G upstairs to his doctor's office maybe they would take a listen to him. It was determined T had a "late summer virus" that could last up to 10 days w fever and cough. Grayson was in the clear bc he was not exhibiting a fever or coughing anything up. By the 19th, Sunday, Grayson's cough was much more hoarse and got us questioning-can we give him his asthma med? It's what we would have done before cancer if he had any sign of a cold. But now the cold is here bc of the chemo drugs and may last the whole phase. That is a question for me to ask tomorrow.

As for most of the week we did alot of this:
Reading, trains, computers, Ipad and Iphone, Leapfrog and Leapster, and movies and coloring.
And by the way-I am beginning to hate how much TV we watch in this house. I try to steer G toward something else but it really is his comfort item.

Other than the cough G was in a fantastic mood. Old G was in full swing! Silly and goofy and so active. And the attitude I remember from months ago. Add that to the mix of emotional mood swings the meds give him and he was a real character. Its like the terrible twos multiplied. One minute he is lovey dovey and the next he is wacking us in the head, throwing a toy at T or some type of tantrum on the floor. It is scary bc he truly wants to hurt himself and bang his head on he the floor or furniture. Of course, any injury worries us but a self-inflicted one is stressful. It is like someone else takes over his body. I know it is not as bad if he were older (some of the excerpts I read from the book are horrible) and could really tell us how he felt (the words some of these patients used are painful to read, they truly felt possessed and stolen at times and needed to seek psychological care during treatment to manage depression and other horrendous thoughts) but it is still hard to watch. There is no telling when and what will upset bc he doesnt even know himself until it happens. It is nothing I can plan or prevent in advance like I would w a student w behavioral/emotional issues. They typically have a pattern or way of execution I can figure out. Not Grayson. And it is worst when he is on the steroids. The past 2 weeks have been a nice break in the anger/frustration for him since we have administered no steroids during that time.

Early in the week he was able to squat on his own but unable to rise on his own. He would scoot his body on the floor to the nearest piece of furniture and pull himself up. By Friday he raised himself without the use of furniture or people. He also ate hamburger meat for the very first time this week. Odd cravings thanks to the drugs. He held onto his taste for sweets, too. We added cranberries and raisins to the mix this week.

Another plus! He chose to drink all of his oral meds on his own instead of mommy using the syringe. My boy wanted some control and independence back in his life and that made me so happy. No doubt his physical activity level assisted with these decisions and that was even more amazing to me! I would inform him it was time for medicine and he would scream "I drink!" and afterward he would yell to daddy, "I did it!" So proud of his own little steps!

Our anniversary was Saturday and we spent the day in-Naps and ordering Italian for dinner. Not how we had pictured spending our anniversary months ago (we have been in the habit of a water park getaway in past years) but ever so happy to have everyone together ( and believe me-had we been scheduled to spend it in the hospital I would have made sure we were all together there, too). We even attempted a dinner at the table and it lasted for a bit. The zucchini sticks helped keep G engaged. The calamari kept T content. He had already been home from school 2 days and I was just happy he was eating. The fever just wouldnt go away. We had a family movie nite and stayed up late goofing around upstairs. The best present for me was hearing all my boys (including C) laughing it up as they wrestled w daddy in the big bed. Just like ol times. Watching G roll around, somersault and dive while he gestured to T to do this or that to daddy like teamwork was all I needed.

To complete my week we made our way to Ra for more sushi with my brothers, sister and nephew. Then we stopped by the park for a bit. Being out and about with my family felt great. That time with them was the best bday present of all! It had def been a long time coming. Thank you, Mike, Neal, Amy and Ayden! I know they enjoyed seeing all my boys out in the world laughing it up just as much as we did!

Chemo drugs, treatment and other Medications

I am writing this post to primarily organize my own brain and also express what a typical treatment day consists of along w the medicine cabinet days in the Carper household.

During the Induction Phase (August 2-September 6 35 days total):

On treatment days every Monday he received-

Vincristine thru his port-derived from the periwinkle plant (hmm, who knew?!). It causes the cells to stop dividing. Causes constipation, pain jaws, bones and joints, foot drop (trouble lifting front part of foot), pain in toes and fingers, loss of muscle mass, drooping eyelids, hair loss, seizures. This drug describes G's lack of activity and physical movement we saw in early weeks of Induction. He was so achey and sore. We also saw red -tinted urine and stools during this phase.

Daunorubicin thru his port-an antibiotic that prevents DNA from forming and preventing cancer cells from multiplying. Causes low blood counts, bleeding, fatigue, diarrhea, vomit, mouth sores, heart damage.

PEG injection once thru the leg muscle (this was one x the whole 35 days)-blocks proteins in cancer cells from producing. Causes loss of appetite and weight, fatigue, headache, stomach cramps, vomit, allergic reactions, seizures, kidney or liver damage, blood clots, jaundice, stroke.

Methotrexate Intrathecally (thru the spine/lumbar puncture)-causes cell death. Causes sensitivity to the sun, mouth sores, skin rashes, low blood counts, diarrhea, liver and kidney damage, cough, nervous system damage, neurotoxicity causing learning disabilities.

At home:

Prednisone (steroid) 3 pills in the AM and 2.5 in the PM-kills lymphocytes. Causes mood swings (oh, yeah), increased appetite and food obsessions (we know that already!), increased thirst (uh huh-all he craves is milk all the time), fluid retention, round face and protruding belly (oh, yes), sleeplessness, nightmares (yep), loss of bone mass, sensitivity to lights and motions, weakness, muscle cramps and pain, high blood pressure. There are many horror stories attached to this drug-raging emotions from highs to lows. We had some mood swings for sure but who's to say what was steroid and what was terrible two's or the old stubborn, fiesty G.

Bactrim 1 tsp every Monday and Tuesday -antibiotic that prevents PCP (pneumocystis pneumonia), lung infections

Nystatin 1/2 tsp 3 x day -prevents n treats mouth sores

Application of EMLA before treatment on all puncture points -numbs the applied area

This phase was alot of the up and down re: appetite, moods, energy level, physical abilities- fine motor and gross motor, blood numbers. We also noticed sores on his butt which leads to screaming fits everytime he needs a diaper change. These poisons are not kind to skin tissue. It was nerve-wracking when he wasnt walking, couldnt walk, screamed when we made him and even now it is not the most fluid gait but he is definitely picking up speed. He even tells us he is running! It's too funny. The problem with alot of these drugs is they are cumulative. We may not see vomiting or this or that one week but weeks later it all catches up, even during another phase so then you are not quite sure if it was a phase 1 drug catching up to us or a reaction to a stage 2 drug. You just dont know when. That sucks.

Consolidation Phase

September 7-late October/early November

(depending on progress. You return to the beginning or last point of "dropoff " if numbers do not cooperate throughout)

Weekly Treatment on Monday includes:

Methotrexate thru the spine

Vincristine thru port

At the start of phase and again at midpoint:

2 PEG shots in leg muscle

Ara-C (Cytarabine) thru port over 4 day period two weeks in a row (M-Th) a.k.a our homework drug that I leave clinic w all materials in a kit-kills cancer cells by disrupting DNA. Causes low blood counts (resulting in bouncing numbers and an increase number of transfusions needed during the phase) increasing the risk of infections (we already saw this by his 2nd week of dosage w a cold, cough and runny nose lasting a full week and continuing to date), bleeding, fatigue, paleness, excessive sleepiness, fever jaundice, flu-like symptoms w bone and joint pain, headaches, seizures, numbness in fingers and toes, nausea, vomiting, loss of appetite, hair loss, mouth sores, and irritation of eyes.

Cytoxin (Cyclophosphamide or CPM) pushed thru port, then monitored w fluids over 8hr period to assess bladder damage-prevents reproduction of cancer cells. Causes very similar to the Ara-C with the addition of bleeding from the bladder, cough, rashes, blurred vision, sterility, and metallic tastes after injection. When he is scheduled for this drug this is our LONG day bc of the push for fluids, monitored urine counts and weighing of diapers. Then we have to push the fluids again at home.

At home:

Nystatin 3x day

Bactrim every Monday and Tuesday 1x

No steroids during this phase

Mercaptopurine 1x day - interferes w growth and spread of cancer cells. Side effects are exact to the cytoxin w the addition of low blood counts, liver and kidney damage and gout.

Zofran as needed (definitely recommended 3x day when administering Ara-C during those 4 day periods). This drug has become our BFF. I think it really has prevented alot of the nausea and vomiting we could be dealing with and havent.

What we are discovering w alot of these drugs that while they do their job in terms of attacking cancer cells and keeping them away other body systems and functions pay the price. And because most of them effect blood counts each treatment day we could be met with a surprise transfusion that either has to be taken care of immediately or possibly wait til next day. We already have a bag that is solely our treatment backpack that has a change of clothes for G and I and laptop and other overnite goodies (as suggested by the nurses). And as I mentioned before (in retrospect) we left Induction behind w minimal bumps in the road. It worries us how cumulative these drugs are and how hard they will HIT us and WHEN. We are reading this book Childhood Leukemia A Guide for Families, Friends and Caregivers by Nancy Keene. It is such an easy read. So quick to get answers from. What we like about it is you dont have to read from beginning to end. You can hop around to what fits your need at the time-drug info, glossary, phase descriptions, nutrition, coping, hospital terms, etc. The one thing we dont like about it is the italicized text. They are personal stories from parents. You would think-oh how informative! Yes, it is. Sometimes too informative. There is no clear difference between an informative "good/happy" story or a "bad/wish I hadnt read that" story. I am a fast reader, glancer and glimpser and even I get caught off guard. There are some rough stories. Even those that are simply explaining how their child reacted to a drug is gut wrenching. It is real. Makes it pretty hard to swallow and wonder and worry about our guy. I cant read this book over long periods of time. It sits on our dining room table for either one of us to go to for whatever reason at the time. Even Jenny warned us to put it down from time to time. I fear for the long term effects these drugs will have on him. Developmental delays, physical therapies in the future, organ damage, social-emotional impact, etc? Who knows? I know I need to think positive but this is also the reality of it all. Any of it is possible. And we will be at this for such a long time. It is so frightening. Frightening to know that 7 weeks ago I had a near 2 yr old advanced in so many ways. I was lucky again, just like his big bro and even his lil bro at this point. But I guess the luck has held out bc so far I have not noticed any regression in any developmental area. When he is feeling good he is practically his old self w some setbacks due to soreness or tubies hanging out of his chest or an uncontrollable mood swing. It is just that there is so much unkown. Unknown chapters and discoveries and NO CONTROL on my part. I know I have said it before but it really is like waiting for the other shoe to drop (the first shoe being the fact that leukemia is even a part of us)...or maybe the whole shelf of shoes you're staring at in a Payless one day.

If all goes well then we move to Interim Maintenance Phase. Otherwise we backtrack. Here's to more speedbumps and not major highway construction!