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!

A New Stage

September 7-12

The day we went to the Arboretum we noticed some mouth sores on G's inside lower lip. I had skipped a few doses of Nystatin (to treat and prevent mouth sores) and it bit us! Dr. Kwon had mentioned that if he didn't have any at end of Induction stage then we really didnt have to do it everyday. So I skipped Tuesday, Wednesday and Thursday but realized on Friday I made a stupid move. Yeah, he wasn't getting Prednisone anymore for some time to come and I made an errror in eliminating any meds at all. We created a routine w meds and to take a break and then take back up again during Consolidation phase could cause a huge fight (bigger than the struggles we already had during med time at home). That Friday I gave him a dose of Nystatin but it was to late as evident Saturday morning. I went back to the three doses a day and by Sunday morning they were gone. The good thing was they didnt seem to bother him at all. They just looked uncomfy to us!

Tuesday was to be a big day. Nurse Jenny told us to be prepared for a long one. 8 am to 4:30 pm. We were scheduled for Methatrexate (injected into his spine which he has had several times already (which also meant another morning of no food or drink due to sedatives), Ara-C, and Cytoxin (both injected into his port). We were told to bring alot of diapers. The Cytoxin drug he would be administered compromises the bladder and he would be pumped w fluids all day. The last time he was given fluids all day in the hospital I remember changing his near explosive diaper every 30 minutes! I brought a brand new pack (the size 4 he didnt fit into all that well anymore bc I didnt care if those were wasted thru in one day).

We were met by our fav Nurse Jenny. She came in with a huge smile and said, "Good news! Pause We are in remission!" I didn't know what to do. I know my jaw dropped and I felt a rush of tears but something told me to not bother celebrating w those tears. I remember locking eyes w Charito. Our eyes smiled but hearts said something else. It was like there was guilt for feeling happy about it. But it was the "IT" we didn't understand. What did this mean? And before I knew it we asked that question simultaneously. She explained it meant that there was an absence of leukemic cells in his bone marrow, generally speaking(I could get all scientific and explain the percentage that they look for in relation to body mass and blood conditions and the number of cells, etc and what percentage we were at in dr terms but really its all junk). Fantastic news. That means everything that was being to done to this point did exactly what it was supposed to do. We were on a great track. She gave us this glimmer in her eyes that told us it was ok to be happy for this. We still had to go thru the timeline as described weeks ago but this was all great news.

The day moved on. She washed (sterilized) his port, put a pillow on it (gauze), wiped it w a blanket (more gauze) and poked on the count of 3 -our usual routine for port access. The needle is in and he is all hooked up for meds and/or sedatives. The only difference w port access this week is that he would go home in access mode. I had a chemo drug (the Ara-C) I was to administer thru his port the next 3 nights.

It is too funny...he cries and whines thru it all but asks thru tears to help her. He still wants to hold the tubes that collect the blood for the lab results that give us those blood numbers 20 min later. See how he has the purple tube in his left hand. He even says "otay" after each step (okay). She just smiles thru it all. Other nurses come in to watch bc she just brags about him. She wants to show him off to the 8-13 yr olds who whine during port access and spinals bc G does a better job than they! One day he won't cry about it! You just wait and see!

On a tired day during sedation (if he had a rough night w little sleep he takes a little nap after procedures)

When he wakes or during sedation he looks this giddy! Happy sleepy drugs will do that to anyone! He is watching TV.

His numbers when we walked in:

Weight-20.2 lbs

Hemoglobin-7.8 (below 8-not good)

Platelets-236 (went down but well over 20-so good)

ANC-1, 160 (Went down but still not nuetropenic. Surprised us!)

As soon as I heard that Hemoglobin number I knew we were in for a transfusion. I automatically assumed it could be taken care of there in clinic (I mean, we were going to be there all day long!). NOPE! Transfusions are handled in PICU or PEDS ( I guess they are working on getting the rules changed for clinic allowance but it still has not happened. It's been a two yr work in progress according to Regina our clinic pharmacist, another sweet lady). Megan (another nurse of the dynamic trio that is slowly introducing herself to G when Jenny cannot be there for G) asked us if we wanted to take care of the transfusion that day or Wednesday. Seeing as it needed to be taken care of in hospital if we did it that day we would leave clinic at 4:30 and then walk to PEDS and do the transfusion and be home around midnight. Um, no thanks! I wanted to see Triston and Caden at some point later in the day! It was bad enuf we had a rough morning getting our butts in gear (G did not help-since he had no food or drink and was his usualy crabby self he really fought me to put his EMLA on (magic cream. I have to apply it to his port and injection sites-spine or hip bones right before we leave each treatment day so it has time to numb him. Then I struggle w a Tegaderm patch or now super cheap Press and Seal as a bandage over it so it doesnt ooze all over him and keeps it in the right area. Who knew the many uses for Glad Press and Seal-it's not just for your kitchen/food duties moms!). It made for an entirely crabby household. I think Charito and I had tense vibes clicking thru the house which added to the chaos. We were nervous. We did not know what the day held for us and it was an uneasy feeling. Our routine of Induction phase was ending. The drugs and reactions and knowledge we had of that stage was over. Something new to tackle was before us and it scared us. I just wanted to see my boy and end the day on a good note with them. A celebratory hug, perhaps?

So we decided to take care of the transfusion the next day seeing as a hemoglobin tranfusion is 3-4 hours in length.

It's ironic how in retrospect (after the description of our new Consolidation phase) we now look at those 5 weeks of Induction with a bit of ease ( okay-a tadbit). It was not as hellish as it was supposed to be? Maybe? Once we got past the shock of that first week and into battle mode, I guess. It was more emotionally draining. Draining of us the worry of so much unknown. Most of what we prepared ourselves for had not occurred yet. But G pulled through and "made it work". We were blessed with :

• more than 2 weeks of great mood and energy


• walking w assistance vs the weeks he lied on the couch w barely any physical energy but some giggles escaping once in a while


• only two episodes of vomit (one bc of morphine and not chemo drugs and another bc we pushed fluids to much and too fast and upset that lil belly)
  

• smiles and laughs


• mood swings as we were warned about which I didn't mind so much bc it meant he was in his old stubborn self


• great appetite


• brotherly and mama's boy moments


• daddy's boy silly moments


• Bryley cuddles


• tapping Caden's "nosey"moments


• and a couple outdoor field trips


• no colds or infections (of the sick type or at his injection sites) for any of us!


• visitors


• Great meals and prayers and cards from family and friends


• and so much more I know I am forgetting

The spinal injection took place and then the Cytoxin was injected into his port. Then we moved down the hall to the Day Room to hang out w fluids rather than
occupying a private treatment room. G was awake and talking up a storm. And ruling over us w his position as dictator as usual (his new title since the hospital stay). This is where he sits there all hooked up and dishes out directions to us. Which movie, what to eat or drink or what toys he wants. Anything to make his stay more comfy is how we see it. Daddy took a break around lunchtime and walked over to Portillos. G was content w his cheese fries. We watched a few movies and read a few books. By 2 pm Charito left to get T from school. I waited w G. The most important thing during this day was his urination count. W/ each diaper they weighed his output. He needed to reach a certain amount of output before we could leave. At 4 pm the Ara-C arrived and Jenny demonstrated to me how to administer it. It seemed eezy peezy. She reminded me how to remove the needle on the final day as well. Right when we were ready to go home she noticed he had not given enuf urine diapers. We were shy. The office closed at 5 pm. I did NOT want to get sent to PEDS to wait for a pee! She went to talk to Dr. Kwon. He told her to give him a shot of a med (dont remember the name right now) that would make him urinate in minutes just to be sure there was a decent amount of urine available in his next release. It worked fast! She weighed the diaper, tested the cotton balls I had been inserting (they saturate them to determine if there is blood in his urine) into his diaper and sent us on our way. It was now 5 pm. I left with my bag of "homework"-the supplies necessary to do his intravenous meds. I did not get home til almost 6 pm. It was a draining day.

This is what he looks like in access mode as opposed to just the "button"/port on his chest. I had to tape up his "tubies" so they didnt dangle past his belly button (we learned fast when it got caught under a Geotrax train track).

My homework. Gloves, alcohol wipes, 2 sodium chlorides, 1 Ara-C and 1 Heparin. I sterilize the access tube w/ alcohol, flush (clean) with sodium chloride, inject the Ara-C, flush again with sodium chloride and then close with heparin to prevent clotting. This was to take place 4 days in a row at 4 or more different sessions during the 56 days of this Consolidation treatment phase.

EVERYONE went to bed early that evening. I made it home again without any vomit in the van or for the rest of the night for that matter. I had to rest up for the transfusion the next day.

Wednesday

When I arrived in the lot I was uloading the car and who approaches me? Dr. Belmonte. He was headed out somewhere and walked over to say hi. I was able to tell him we were in remission! It was so nice to give him the news. He hugged us and told me, "Yes, this is gonna be a good story to tell in the end. I just know it. I am so happy for you guys. Keep it up" Just running into him unexpectedly made my day!
Nurse Jenny prepped everything so that all I really needed to do was walk into PICU and have the blood sent up. She cross-matched his type before I left and even sent the papers electronically for all necessary staff to be prepared for the next morning. I was told to arrive at 9. I dropped T off at school and arrived a few minutes late. I then sat at admissions for 20 minutes. Then had to wait for everyone else to get their act together in our PICU room. Even though we had our blood type match bands on and all of OUR paperwork in order someone else down the chain did not. The transfusion did not begin til 11 am. I was so upset. I was under the impression the day before I would be out of there by 1 pm the latest. Now I would be lucky to be home by 4 pm. I had made no other arrangements for T to be picked up (I usually do on Mondays just in case but, again, I didnt think today would be an issue). That morning T had such crabbies. I had the crabbies. We was so whiney and well, annoying. Hanging on me at the school doorway and whining about junk. It was one of those mornings I never wanted to have, the kind where you cant wait to get them thru that school door and off you. I was THAT mom that morning. I hated myself for it! And NOW bc of some moronic unkown hospital staff member I was not going to be able to pick him up and make it all better. I sobbed before I could compose myself enuf to think of a plan. G was sleeping soundly. He usually does during a transfusion (especially the 4 hour ones) bc of the benadryl. I know it probably seems like What's the Big Deal, Sara? Just call in your typical back up people you have ready on Mondays. But it wasnt that at all! It was the way T and I left each other that morning. I WANTED to be there and now I couldnt. It made my stomach turn. I texted Charito crying. I hated that I had no control, ONCE AGAIN. The nurse on duty offered to have one of the volunteers sit w G while I went to get Caden. I was not about ready to let some stranger sit w my boy for an hour bc of traffic and risk him waking w/out me there. He calmly walked into PICU and PEDS in recent weeks and I was not going to jeopordize that happy feeling, especially when its as if he knew he had fans on this floor! I called Mamac to let her know that my neighbor would walk over and sit w C while she walked to school to get T. After I hung up I cried some more. The situation was taken care of but it still hurt.

When G woke at 2 pm he was hungry. He fell asleep within minutes of the benadryl at 11 am. I blogged and read during that time. I just couldnt nap. I was too upset and restless. Good thing I thought ahead and ordered him pizza from food services. They have really good mini pizzas! He ate half! I ate the other. Here he is enjoying every bite while watching Cloudy w a Chance of Meatballs.

We were home around 5 pm that day. I was pure mush. I couldnt think about anything. I was on emotional edge as well. I wanted to cry at every little thing. I for sure cried when I saw T and C and hugged them tight.

We ate dinner, pumped G with the homework meds (he took it well considering it was mommy's first time. He played w the Ipad while I did it. I have to say...it felt empowering. Here I was playing nurse again and juicing up my boy with the chemo drugs that are going to fix him. An odd feeling but a good feeling), ate some chips and watched some tv before bedtime. The end to another day, a new kinda routine and pretty much a taste of the next 50+ days at the Carper household.

We noticed by the second night the nit-pickiness of these new round of drugs. The Ara-c can be given anytime during the day if we wanted but it was recommended to do it at night (so they sleep thru the nausea. It gets kids VERY nauseous. And so does the Mercaptopurine (Ha, Jenny told me the parents call it More Crap To Put In! So, I am just gonna call it "More Crap" or Mercap during blog). But in addition, the More Crap needs to be taken on an empty stomach and no less than 30 min before Zofran (anti-nausea) and no less than an hour before or after any dairy consumption or it will not absorb into the body. Not to mention the time it takes for me to setup the homework meds for clean administering and gauge his mood for ease. So, we knew we had to get the Zofran in sometime after dinner then watch him close to see when he stopped grazing on food or drink. You see, he rarely sits long enough to eat a family meal. None of us do these days. It is too difficult. The best times it happens is on weekends and def during breakfast on the weekends. Otherwise we just give in to the grazing of meals and snacks and drinks bc G doesnt really know when he is gonna want to eat. I take what I can get. The drugs really mess w appetite and control. Often he eats whenever he sees T doing it OR when he passes by some food and it catches his fancy, so I just leave plates of food out for G to pick at. It is MORE important to us that he eats and drinks and digests than fighting a family meal into the schedule that he is gonna throw a fit over anyway. He sat on a couch for days and now that he has his energy back and movement he does not want to stop. We dont want him to stop. So this is our compromise. It just means watching him closely all day to determine when he took a sip of milk or not. I pull items when I can, when hes not looking or engaged in something else. So you see that bc of this meal frenzy that occurs after Charito gets home I can't have a set time I administer the IV drug, Ara-C. Makes for hectic nights with tons of observations. But we manage. At least most nights Charito and I get to sit down together bc the kids already ate (T is very tired these days w full day school and often chill by 6 pm. I am not quite back to my 6-7 pm bedtimes like before diagnosis but I WILL get there!).

By Thursday we noticed G had a cough and runny nose. I called on Friday and Jenny told me that as long as he wasnt coughing anything up, vomiting or had a fever it was all part of the reactions to this round of drugs. A constant cold or flu. It continued through Monday at our next treatment and Dr Kwon was not too worried about it. So far it was all normal.

We also noticed that week that G started to lose some hair. We would find these single loose hairs on his pillow at night but I guess denial kept telling us they were Bryley hairs (oh yeah, on a good nite (being sarcatic here) we have all 3 kids cuddling plus the dog). I still joke that "I found another Bry hair!" Although we knew this would be a possibility I didnt know how his hair would go about falling out. Clumps? Patches? But so far it is lose hairs like he's shedding that I notice on his pillow, blanket or changing table pad. I dont think it's all that bad right now. It just looks like he has a messy crew cut with a shaved back. We shall see if there is more to come or if it will stay this way. Today (Sept 18) it hasnt changed much from the photos below. Kinda like he has a mohawk on top bc his crown and middle are still full.

Guess who snuck in?!

He is still a cutie. And boy has his old personality kicked in full force. I have realized that even tho the sibling fighting and arguing can get at the mommy nerves I would rather hear it than never again. I find myself grinning when I hear it in the other room. The same episodes and reasons I used to write about G in my other blog before leukemia-him pushing T to the limit, antagonizing til I intervene or just plain exercising his right to well, anything he wants. It is mulitplied by a thousand these days. He has little patience, control and emotional regulation. I even got a few glimpses of old tantrums-full out on the floor w a pat of the head onto the floor in baby frustration. The drugs do this to him. It is hard to watch but I keep that in mind. He has so much out of his control that he is trying to control it all. A lil guy with a humongous sorcerer's complex! I cant imagine how trapped he must feel at times. And yet, to just go w the flow and not really understand it all. I guess he just knows that as long as I have 'mommy, daddy, Tis Tis, my baby (Caden), and Bwywee' it is gonna be alright. A lesson learned-I need to think that way some days!

Some Freedom, Some Forget and Tons of Grateful

Aug 29-Sept 6
The hopes for another good week were successful! This week was as busy as we are allowed these days and it felt so good! You know I like to feel that hustle and bustle running thru my veins!


We fit in an impromptu family photo (thanks to daddy's tripod) for T's class. Even Bryley joined in if you look at the bottom of the pic. It's cute-she has a variety of picture frames all over the classroom, one for each family, for the students to view whenever they want. It looks great! Might have to steal that idea for my class one day.


Grayson continued to don those chubby steroid cheeks and sport them with pride! I love them!

He mastered his NEW pout face! We noticed he caters his head tilt to the left-the same side his IV connects to near his collar bone. I remember asking Nurse Jenny about that in that 2nd week of outpatient clinic when we noticed he cocked his head to the left as he walked around. She described it as how some kids just baby the side of the port, "nurse it like a broken wing". Interesting. Well, now he does this:

Hard for us not to laugh at in the middle of any emotional upset.

He continued to eat like a champion. He was still consuming anything and everything every 40 minutes or so and drinking milk as if we would be suffering from some type of cow depletion in a matter of days! His tastes that week included: mac n cheese, hot dogs, crackers, cheese cubes, sunships, green beans, spaghetti, pizza, meatballs, adobo, popcorn (pirate booty bc I was afraid to give him the real stuff he's used to in case his gag reflex was a little more sensitive), and all of sudden some SWEETS like applesauce, plums and strawberries. Fresh fruits get more complicated for me time wise bc he cannot eat the skin of any fresh fruit of veggie. The airborne chemicals and touchy feely germs of those who "tested" the produce are harmful to his immunity. Do you know how tedious it is to cut the skin/seeds from strawberries and then convince him it is the exact same thing T has? But in the end we were pleased he was chowing down, pooping and peeing-all we need to be sure the pipes are working!

That Monday we were scheduled for a bone marrow and spinal. Another morning in which he could not eat or drink anything from 4 am on due to the fact we would receive morphine and versed (Versed/Midazolam is given to children before medical procedures or before anesthesia for surgery to cause drowsiness, relieve anxiety, and prevent any memory of the event. Midazolam is in a class of medications called benzodiazepines. It works by slowing activity in the brain to allow relaxation and sleep). This makes for a very crabby G in the morning while still trying to get T ready for school and feed C...and still get ourselves ready.

Charito and I met at the hospital. We walked in completing our usual routine. As soon as G enters the parking lot or lobby he tells/whines to me, "No medicine. No Dr Kwon. I want McDonalds". We have to carry him into the exam room bc he would much rather be elsewhere. He asks for Mcds bc that is our treat after session. He still will not choose a gift from the treasure box so Mcds coupons it is. We were met by our fav Nurse Jenny. She came in with a huge smile and said, "Good news! Pause We are in remission!" I didn't know what to do. I know my jaw dropped and I felt a rush of tears but something told me to not bother celebrating w those tears. I remember locking eyes w Charito. Our eyes smiled but hearts said something else. It was like there was guilt for feeling happy about it. But it was the "IT" we didn't understand. What did this mean? And before I knew it we asked that question simultaneously. She explained it meant that there was an absence of leukemic cells in his bone marrow, generally speaking(I could get all scientific and explain the percentage that they look for in relation to body mass and blood conditions and the number of cells, etc and what percentage we were at in dr terms but really its all junk). Fantastic news. That means everything that was being to done to this point did exactly what it was supposed to do. We were on a great track. She gave us this glimmer in her eyes that told us it was ok to be happy for this. We still had to go thru the timeline as described weeks ago but this was all great news.

My error-Remission news occurred on September 7th! But you get the point!

SO remember this paragraph you just read for the next post bc I for some reason can't copy and paste it like I want to-mentally place it there when I mention it...that's your homework people!

Dr. Kwon entered and exclaimed we were done with induction. No more steroids. I was confused for a bit and realized it had been over a week since I looked at our timetable. It happened so fast. The induction stage was over that day and we began stage 2-Consolidation next week. 29 days gone and went. No more steroids for awhile. He went over the drugs that we would be introduced to, new timeline and warned us it would be intense. The drugs and Grayson's reactions to them, that is. I took a deep breathe. Feeling stupid deep down. And I thought the past few weeks were difficult? Alrighty then!

He left the room and Jenny could tell we were trying to take it all in. She is great like that. She dumbed it down for us. Her one liner sums it up pretty well-"it is gonna kick his little butt". She was being honest. She sees hundreds of kids and knows what is around the corner. But in my lil guy's defense-she reminded us that all the side effects he was supposed to display during induction he barely did. He wow-ed them. So he could do the same wow-ing this time around but we should be prepared. Consolidation was going to be like he had the flu for 56 days straight. Achey, nauseous and constant low grade fever is to be expected but to immediately call if it even tapped at 100.4. Huh, and I was already checking his temp 3 times a day for habit and never a one. She also told us there would be chemo drugs we would be administering at home thru his port for several weeks. Okay?! And this was in addition to the oral drugs he was to receive. She told me should would teach me how and it was no biggie. And he just started walking again with support. Would the achiness take that away from us again? I still didn't know what to expect. So they handed us the new timeline for stage 2 of treatments-56 days. A new set of routines, drugs and reactions. Yippee!

We finished up treatment with the usual bone marrow and spinal. This time the research coordinator remained in the room to receive the handoff of samples herself. I couldnt help but think, "Yeah, that's right...you take those leukemic free tubes and go help my baby get cured as well as many other kiddos!" I helped hold him in his C-shape as Dr Kwon did his thing. I still like to watch the procedure. It is amazing to me. And my lil baby does so well. He doesnt even know what is going on behind him. And under these light sedatives he is awake and silly. He is lovey dovey with tons of "I love you"s. He also gets the cutest hiccups and giggles. Once again he did great. After 30 minutes he is allowed to sit up and eat and drink and duck out. It was a nice early day. As we got our stuff together he chose a Target gift card. I joked that we could go shopping at midnight when no one was around! Jenny realized then she did not give us our lab results earlier. She joked back with a comment about more good news. And it was-we were not neutropenic! Neutrophils (ANC) went from 290 to 1,410. OVER 1, 00!! Hemoglobin was over 8 (down from last week but still safe) and platelets were 268 (up from last week). We could actually enter a store! Yup, it was a good Monday. And to top it off-he did not throw up from the morphine that day like he had last week. He was actually in a great mood all day long. Wondering what ol' chubby cheeks weighed that week? 19.1 pounds. He had been teetering 18.2 and 19.4 the past 5 weeks. He was in the safe zone.

Tuesday-You know what we did!!! Went to Target. It was awesome! It was the first time G had been anywhere else other than a doctor office or drive thru in 5 weeks! I was so giddy. I had my shopping buddy back. We were probably there for almost 3 hours. Every corner we turned he squealed and narrated to what we saw, should buy, what was on my list, etc. The smiles and laughs were priceless. Mommy, I see a table, lamp, milk, cheese, bandaids and on and on . He pretended to drive the cart and made vrooom sounds as I pretended to make sharp turns and drive fast. He was so tickled pink and thought everything was silly. I was finally out doing what I had always pictured I could do while T was in school- a stay at home mommy kinda thing. I was silly and tickled pink as well. We took our sweet time and bought the place out. And yes, there were plenty of toys in the cart for him and one for T, too. He even remembered how he used to help me out by placing our items behind him in the bigger section of the cart. Only this time the towel I had him sitting on to soften that boney butt of his and his lack of arm strength these days turned that job into more of a toss! I didnt care. He was thrilled to help mommy.

More train playing with his new Target purchased trains to add to the collection!

It was great normal kinda day!

Wednesday we had visitors!

Auntie Katie came to hang out and boy have I missed her! That is G and her daughter Addie. Isnt she beautiful! She dwarfs G and she is only 2 mos older than he! We had a blast just catching up. The adult distraction/conversation was so overdue for me!

We called grandma and grandpa alot!

We snuggled a plenty! The hospital brought on some changes for G. Now he likes blankets and pillows and cuddly things. Nemo was been on our movie hitlist for weeks and when he found T's Nemo he asked to bring it to bed with him (our bed of course. Even tho he had been feeling really good the past 2 weeks the first two nights after treatments he sleeps with us. The other nights I felt comfy enuf for him to sleep in his own room). He even likes to cuddle with us now. That was never the case before.

This evening he was retelling the Nemo movie to me.

Pausing for Nemo kisses.

Thursday

G was still feeling really good. No nausea and eating well. Nice energy level and great mood. Still not walking on his own but that is what I have a stroller for! Caden had his 6 week appointment that day. Since G was feeling good I took him with so Belmonte could see him, too. G doesn't get to see him anymore and my kids adore the man, as do I. Both G and Belmonte lit up when they saw each other. Belmonte was so pleased to see him in such a good mood and so talkative. I gave him the brief on G and T and then we moved onto Caden. We had a great talk. I told him how grateful I was to have him meet us at the door and break the news to us. He said he would have had no other way. He asked how Charito and I were doing. I told him he has a fan club consisting of our family and friends that will one day take him out for a drink. He slid in the comment that THAT weekend he needed a drink. I cannot tell you how much that serious type joke meant to me. It got to him like it did us. That IS a good man, a GREAT man that I am blessed to have in my life, OUR LIFE. He asked about Caden's personality. I responded with a chill and go with the flow kinda baby, a good baby, a happy baby and a great sleeper. He was like an angel. Belmonte joked that he kinda had to be, right? I agreed. I blessing in disguise to be such an easy baby in all this.

And then that GREAT man gave me some good mommy news I needed in my life. All the stats were fine w Caden (he and I were pleased) but his motor skills were off the charts. My 6 week old had the motor skills of a 4 mos old! I mean I knew the way this kid held his head up amazed me from day one. More so than T and G ever did. But I watched my lil guy literally prop himself up on his elbows and forearms and raise that head higher than I had seen him do w me in recent days. Then he turned left and right as he had been doing at home. Then kicked up those feet and scooted those legs attempting to push forward. Belmonte declared him to be an early crawler one day and a 4 mos old. I loved it. I didnt feel an ounce of guilt for not giving him his tummy time in who knew how many days. I usually know that stuff. When and how often I do what w my babies. But poor Caden wasn't getting it daily. I couldnt pull it off. My baby boy was taking care of his own. As if to say "dont worry mom, I know you got your hands full. I got this one!" I soooo needed that moment that day. To know that Caden wasnt suffering in all this. He was AOK. And seriously people-if you want to see my lil freak of nature do his thing-stop on by. It is adorable!

Before we left the office Belmonte hugged me and told me if I ever needed to talk he was there to listen. Yup, I have the best pediatrician ever! Hands off! He is mine!

Friday, Saturday, Sunday and Monday (Labor Day)

His appetite decreased a bit but nothing that alarmed us. After all, he had not been given any steroids in a week at that point. His mood continued to be great and there was so much of old G for us to enjoy. It was a wonderful week. We have learned to get past his mood swings as best we can. He cannot control them. He is impatient and eager and stubborn more than ever. The drugs do that to him. We cannot get upset over every little thing. This lil man has no control over anything that he is going thru and all he wants to do is control the things he can. Like the movie of the hour, toy of choice and anything else going thru that mind of his. I have learned to pick our battles. He cannot have everything he wants all of the time. Always was our rule and still is. I will not let cancer change his entire personality if I can help it. I have two other boys with wants and wishes, too and G needs to still see that in his life. As much as our lives are directed by his needs I try my best to alter the directions slightly in order to shape our family, our morals and our decisions. I am trying. No one can be left in the dust while another is ahead of the crowd. It is just not the way Charito and I have done or will do things. We just have to try (that is my promise to T and C).

Saturday

This was a day forever in our hearts. We headed out to Morton Arboretum. Charito had never been. And it was still a safe place germ-wise to visit. The weather was gorgeous and well, my kids love nature so it seemed perfect. Our first family outing in 5 weeks! Hooray. It was glorious.

Words cannot express the emotions, laughter, smiles and freedom EVERY ONE OF US felt (okay, maybe Caden not so much but like I said he goes w the flow in this family! Happy camper always). The freedom to forget for awhile what we had been thru the past 5 weeks. The freedom to let the air in. The freedom to forget the bad for a bit and remember the some of the strength that had come of all this so far, no matter how little it may seem some days. I truly didnt realize how tired I was, drained til that day. A day I had the chance to step outside of the "new normal"of meds and my mommy nursing degree, T at school all day, the life of a newborn and oh yeah, everything else in between like cleaning, shopping and laundry. And not to forget the gratitude for a day like this. Gratitude toward the people that helped us get to a day like this. To be around others even if they were strangers. That feeling I had at Botanic Gardens...I could see it in Charito now. We just kept catching each other with our eyes/ our secret language and it said it all. Every moment we watched the kids take part in we felt the same way w each reaction. We didn't have to speak. Just those glances were enuf.

There was also something about that place...are moods...nature...god...I am not sure, but G was motivated! Motivated to move. He ACTUALLY wanted out of the stroller. New to us! He wanted to experience what T was taking part in, just like the good ol' days. Such strength and awe beamed thru his big brown eyes. He was so ready. As long as mommy or daddy were there to hold his hand he wanted to do it all. Even though his gait was wide and full of so much effort, he did it all w a smile. I wasn't going to be picky just thrilled he wasnt lying on a couch w little energy. He was out n about!!

Again, I cant begin to express how this day felt but these pics should say it all....

During this shot I really wondered what he was thinking about...pondering...

I loved the sense of rushed exploration in his body movements during this shot. You just couldn't find the pause button on that mind of his!

At one moment I glanced over at Charito and he seemed intent to capture this shot. At the time I didnt know what it was. As he left the area I walked over to check it out. My breath paused for a second. I knew then that this day was meant to be. It was for us. As much as I was missing my family and wishing my mom and dad could see us 5 capturing our day of freedom I knew they were with me. My mother loves butterflies and anytime, ANYTIME, I am thinking of her in a moment I need her most a butterfly has appeared. This was our moment. I love you, mom. This pic is for you! Surprise! From your G!

He was so excited to go on the slide. Because he couldnt climb the slide access himself I had to walk up the wall and dump him at a halfway point onto the slide. He thought he was doing the whole length of the slide. It was quite the workout.

Sitting up high looking for 'Tis Tis' (Triston)

After the first fort that T went on n G watched, he would NOT go back into the stroller. He was so content leading daddy around.

I love the way he looks up at daddy in this one!
I want to enlarge it in black and white!

Look at that face! I want to kiss it all over!

G saw some boys climbing on these rocks that were nestled in a stream. He told us he wanted to go there. I led him over. He indicated he wanted to make it to the other side. It required long steps and rocky ground to do so. He insisted. I held onto his waist and off he went. He kept going. Heading to the rougher rocks and wider, larger stones. I was nervous I wouldn't keep my balance. He grunted and screamed for more. The whole while I thought nothing of comparing these little rocks (to me)/huge rocks (to him) as his mountains. The mountains he needed to conquer in these upcoming months/years and those he had already surpassed. Those tiny toes, feet and skinny legs still had a long way to go. I want his determination to remain the way I saw it on that rocky stream. My warrior. My conqueror. It was another moment I wanted to cry for him and how he keeps me going each and everyday. Look at him go! I will be enlarging this one in black n white, also.

Looking up at daddy,"I did it!", for the perfect shot!

Me and my boys!

We had so much fun. The Morton Arboretum left such a wonderful place in our hearts that we purchased a membership there (which works at Botanic, too). We figured if places like that can make us feel that good we are in! Therapy anytime! Besides, they are also great places to go when G is neutropenic and we have to avoid those crowds. At least we know the flowers and nature and god won't scare us away. And better yet, fall is coming and it is my fav! I can't wait to return for Autumn Reveal...with my boys in tow!