Made it

We made it through today. It was a bit nerve-wracking bc with every turn today his body pushed the envelope. Not Grayson. He did nothing wrong. Not him. I cant blame him. But often I do want someone/thing to blame.

We dropped off T at school by 8:15, ran to Mcds for my coffee, arrived at the hospital by 8:45, and made our morning stop at the in-house bakery. We stocked up on spinach and cheese croissants, lunch sandwiches and cookies for the nurses. Then a quickie into the in-house pharmacy for mommy's fix on Mucinex and we strolled into clinic after 9 am. We had tons of prep work to do in order to sedate him for his spinal tap, injection and list of other drugs.

As long as he was distracted he was in a good mood. Aerum did a good job of playing with him and reading to him. She is so great at keeping him occupied while we wait. Otherwise, any reminder of food and the crabbies surfaced. He was so hungry! He just could not eat before the spinals. He wanted his "bread" croissant so badly! And anytime she left the room I had to hear the same question repeatedly, "Where Armum go? She comin back?"

In order to even proceed with today's procedures he was supposed to have an ANC of 750. His preliminary count came up 680. Envelope pusher! We had to wait longer to have them his blood placed under slides to obtain the precise count. Wallah-over 800! We had the green light!

We moved to another exam room for Goodell to complete the spinal procedures. G giggled during the whole thing. He is usually smiley and lovey dovey, so this was a nice addition to the usual. Hilarious actually. I could tell the med student in the room was a little taken back w a two yr old getting poked in the most uncomfortable of places n positions and there he was giggling. Morphine will do that to ya! It was priceless!

As Goodell left the room afterward, G blew him a kiss and then caught Goodell's. More priceless moments! He has begun calling him "Dahder Dell". All day long he did this. So I will most likely be referrring to Dr Goodell as Dell in our posts. Look for it!

As soon as the room emptied out G was ready to eat! And he did not stop from that point on. Other yummies included cookies, cheese, crackers, some of my chicken sandwich on sun-dried tomatoe bread and milk.

Cookies and phone calls! Hanging out in the Day Room.

Once he was able to sit up and move after a 30 minute lie-down following the spinal we headed to the Day Room. I brought my laptop and Ipad to keep us occupied with games, emails, pictures and report cards. We had the place to ourselves. He had every toy at his disposal and everyone's attention. At one point I had to run downstairs to the pharmacy again bc his new chemo drug ( Thioguanine) is not available in most pharmacies. But the hospital carries it. I needed other refills as well, so Regina sent those downstairs, too. I stepped away and left G with Princess Jennie and Megan.

Another push the envelope moment while I was there-The clerk inputed my insurance info and G's bday was not getting approved. I assured her we had been at this for 6 mos and we have not had difficulties before. I glanced at the price on the bag while she contacted the insurance co and all I saw was $253.86. FOR 10 PILLS!!!! I told her she BETTER get a hold of them bc I have NEVER paid more than $25 for any of his prescriptions. Low and behold we find out she was typing in the wrong digits!!! Whew! W that nerve fest out of the way, I headed back to G. I coudn't help but think about families who have little to no insurance. What do they do?! A yucky reminder of why I have to work!

Upon my return there was G playing dr with Jennie n Megan. Too cute. Shortly after Dell walked in, "I heard Grayson was giving out flu shots. My turn G!". Dell sat with G for a bit and played doctor. He shared some more heart-warming stories with me. More good times I have to look forward to. More incredible feats his doctors will accomplish with him. I just know it.

As it approached 3 pm G still had not peed. He had been hooked up to fluids since morning and nothing. This was the exact reason I didnt give in to the naps we were both craving. I loved that we had the Day room to ourselves for him to move about with his IV pole and play to his heart's content. I had hoped the movement would get him peeing. A little after 3 he had a poop. Nice but not what we were looking for! Another push the envelope moment! By 3:45 it was time for Lasix. It makes him pee and FAST. Within 20 minutes we had 4 pee diapers all meeting his full day parameters. All day pee within 20 min! Goofy! We did our job and could now go home.

As I gathered our things, G followed Jennie to the treasure chest. Megan and I chatted about recent events in our family and how the kids are doing. It is chats like those that make me feel at home there. After a bit I realized G hadn't returned yet. He was probably shmoozing all he could get out of Jennie. I made my way down the hall and there he was. She commented on how particular he was being, how he clearly knows what he does and does not want. I replied that has always been his way. Precise and meticulous. Once he finally made his choice (a telephone) I got him dressed. He was so slow about it. Putting on a show for them. Dramatic emotional expressions, trying to get laughs out of them. He was truly trying to entertain them. I wish I had my camera right then and there. His next move will never leave my memory. He started to approach me to leave and stalled. I asked what he wanted and he told me hugs. I told him to go right ahead. So there was Jennie and Megan standing behind him as he ran to them and delivered hugs. They declared it the best part of their day. But as he walked back toward me he paused again ( and to be honest at this point I was really wondering if we were ever gonna get out of there!! ). He glanced over his shoulder (note-all the while he is delivering happiness he is also playing shy guy with head down and fake pout faces in between deliveries. Again, quite the two yr old production of Faces of Eve!) and looked into exam room 3. There was Dell on the computer observing and commenting the past few minutes of exchanges. I nodded at G. He walked into the room and held his arms up for Dell. They embraced for THE most adorable grandpa-like hug, G's head on his shoulder and everything. It lasted what seemed like forever. A moment that truly felt like it froze in time. You recognize those kind of moments more often when you receive life-altering news mos prior. You don't find them, those type of moments. They find you. I peered at Jennie and Megan and they were teary-eyed. I was, too. It was THE BEST way to end a long day!

I was so proud of my boy as we headed home. I thought about how much he has had to endure. And yet, he can still pass out hugs like candy to those that HAVE TO deliver such pain at times. These people are such an integral part of his life. Our lives. The way he has welcomed them into his world continues to amaze me. I'd like to think that even though so much of his world has been all about cancer these past 6 mos-I have instilled some qualities in him that keep him trucking along and spreading his love along the way. He has obviously touched them in more ways than one. And all I have been doing to express my gratitude is pay it forward. Things like bringing them cookies, baby presents for Jennie who will pop in 7 weeks, and hugs.

I have to say-to think of why we were where we were Monday (get that mouthful?) and how we made it through-we are so lucky. I still believe that. We were gone from 8 am to 6 pm but we had a great chemo day together. A great day with great people and my GREAT G!

The week(s) ahead-

we started the Thioguanine (Tg) Monday night. He also came home with his needle in (port in access mode) for me to deliver AraC thru syringes n port this week and next (M-Th). So we play the no milk an hour before and after Tg and possible nausea from AraC games. Zofran will be our bff the next few weeks. I donned my chemo gloves and gave him his meds right before bedtime last night (by flashight source bc we had no power til past midnite). We are going to follow that routine to limit nausea and enforce early bed for him to power up his energy levels. We have begun to see a pattern (dare I say it!) in possible dips in platelets on Thursdays and/or Fridays so any and all rest he gets is important. He is completely aware his "tubey" is in and gets irritated when it is not tucked into his pants (the IV tube that hangs from the needle attached to his port). In fact, I had to apply more tape below the Tegaderm so the tubey stayed put higher up on his chest. I and he don't mind it dangling below his belly button but more tape assures the needle won't budge. He YELLS to me "fix my tubey!". I am grateful he has learned all these terms to indicate his needs. He even bumped his chest on a toy earlier today and told me his "Port hurt, it hurts mommy. I bump!". I took a look at it and there was no red or irritation or swelling. But he was good to tell me. So, of course we are keeping an EVEN more watchful eye on him and his circus-like actions while his port is in access. I will de-access him Thursday nights and the nurses will put another needle in Mondays. So far so good with this phase. Oh, and I desribed the tip-toe walking to Dell and he stated that if it was that temporary (24 hours) it was possibly a pulled/strained muscle or chemo doing it's bad stuff on his body. If it occurs again for a longer period of time I will have them look into it.

We made it thru the ups and downs of steroid withdrawals and body aches and pains last week and are beginning this week 26 pretty well. A snow day like today perks things up, too! We will continue to plug along and I will keep you all posted bc it has been my best form of therapy. Thanks for reading! Hugs your way! Now naptime before snow play!

Saturday morning ramblings part 2

By late afternoon we were able to get G to place both feet flat on the ground and tell him "flat feet, flat feet" to remind him to walk that way. He needed cueing for a couple of hours.
It was like he needed a reminder that the pain was gone and the auto tip-toe walk was not necessary. Odd. Still eating and drinking well. Being a goof as usual.

He and T are in the basement rocking to daddy's new receiver, listening to Paramore n BOB Airplanes & Eminem n Rihanna Love the Way You Lie. Two of T's favs for a while now. Thanks alot daddy! Even G is singing, "wish ry noooww". Cracks me up.

So the day did get better. The worries minimized as the day went on.
But now I gotta go save them from California girls-Katy Perry. Racey, raging, teenie-bopper, hormone-boosting tune, not needed in my home!

Keep your fingers crossed no crazy fevers or other crap creeps up overnite so we can all go to Toy Story on Ice. Even rice baby Caden coming along. I insist he gets out, too! The kid seems to only inhale Bryley fumes, my gross leftovers and sad attempts at remembering how to cook, lysol and poopy diapers. He needs fresh Chicago polluted air, just like the rest of us! To the ice!!!!

Saturday morning ramblings

January 28, 2011-my catch up of the week. A blurry mess. I am so tired. Another week of being pulled in a million directions.

After his steroid withdrawal aches on Monday night, I returned from work Tuesday and he was still pretty chill on the couch. But by dinner time he was walking around. Wednesday and Thursday were like 2 weeks of couch time rolled into two ACTIVE days. He had so much energy and conversations to get out! It was alot of fun to watch.

But then on Friday, he was on the couch most of the day. Not bc of his mood though. His legs. As we were getting ready for work/school that morning (oh wait that's right-Triston did not go to school Friday bc he came home from school Thursday w suspected pink eye. It was discharging by bedtime and when he woke Friday), Grayson was climbing out of our bed and fell back on his butt bumping his back on Caden's swing behind him. No injuries it appeared, just whines.
But then I had to put the puzzle together after work Friday. Mamac said he was more often on the couch and when he did move he would scoot around on his butt playing trains. I noticed when I tried to put him down in the basement for a "change of scenery" for the boys to play. He remaind on his tiptoes. He would not flatten his foot. I tried to stretch out his feet, flex and such and he was not liking it at all. All I could think of was that he injured himself when he fell that morning. This behavior continued all night.

And then I was not sure if I was over analyzing everything. When I changed his diaper he was a bit red at the body base of his penis ( I guess the lower portion of the abdomen?). Irritated I'm sure from the nasty poops he had all day. But I couldnt help but question if it swollen. I just don't know.

Then it hit me this morning. He prob fell onto his butt yesterday bc when he slid himself off the side of the bed his feet DIDN'T go flat. Those toes stayed put and it threw off his balance. ???? It is just odd to me to be running and goofing off all day Wednesday and Thursday-get my hopes up that he is in back in action -and then overnight his legs tighten up on him like this. It could be chemo or steroids still doing their thing but I dont know. I am soooo on the fence of whether to call the docs.

He is in a good mood. Peeing and pooping. Eating and drinking very well. It is just that it hurts to walk. Something we have experienced before. Will our phone call erase our plans to take him to Disney on Ice tomorrow. See my bro n sis n Ayden that I haven't seen since Christmas? Can it wait til Monday since everything else about him seems fine? I know, I know...you are prob like "it it's bothering you that much than call the dr!" I get it. I just can't express how crazy I can seem and feel at times.

Cancer plays these mind games. But the time I had Grayson, I hardly questioned much about my motherly skills. I was confident in my choices, evaluations, gut feelings. Mothering a child w cancer is so crooked. When you are pregnant all you pray for is a healthy baby. You get past the first time mom fears, first year ifs, first year milestones, first food allergies and from then on the "health scares" seem to be behind you. Yeah, we are always gonna fear those crazy parent things like kidnapping, car accidents, serious injuries, etc. , but overall we think we are in the clear. Then a simple blood panel rips your baby boy of his health. Somewhere in a 4 week period, a time when I was to be enjoying the summer after a insane school year and awaiting Caden's arrival, the Cancer Gods chose Grayson. WHY?! And for everyone involved in his healthy medical life (all doctors and staff and myself in the regular ped dptmt) to be as shocked as we were still makes it difficult. We all knew I had a healthy baby boy. But at some point in July Grayson was sucked in. Those illnesses you pray will never consume your child got mine. I can't help but wonder on what day in July it went bad. What day did his white blood cells spin so violently out of control? And since that day of diagnosis I do question myself as a mother. I analyze and evaluate over and over again. I know we didn't do anything to give him cancer. I KNOW that. But, well but.
So now I watch Caden like a hawk. Triston like a hawk. I did the exact same things w G as T in that first year and a half of life. Is it okay to do it w/ Caden? Caden is just as easy-going and happy and amazing as G and T were at that age. Will he be okay?

Maybe I am not expressing myself clear enough. I don't know. I just know that I worry more than ever about it all. I guess it is just more of what Cancer has done to me.

January 25th

Last night was a rough one. We went from encouraging words at clinic ("You are doing a great job as a mom, struggling with all this"; "He is really trucking!"; "He is hanging in there so well!") to a nerve-wracking evening.

Remember how I mentioned the lack of couch removal on Grayson's part the past week or more? Well, it was about the same when we returned home. I continued to monitor his stools and push the fluids and food whenever he was interested. And then all of a sudden 7 pm hit and he was much more whiney than days past. He really was uncomfortable. I figured he was super tired and brought him upstairs.

For the next 5 hours he was miserable.

His whining was indicative of pain. I mean, EVERYTHING aches when he is on any steroid , but this was worrisome. In the past, just being comfy and relaxed on the couch or bed was enough to pass the aches and pains. As long as he didn't walk much he didn't seem to overdo it (at least that is how he seemed to handle it all). He had always been able to tell me what area hurt him in particular. Last night he just repeated over and over "It hurts, mommy it hurts". It was so hard to watch and listen to. It was clear it was mostly his lower body bc he kept adjusting his body as if to push away the pain through his legs or hip or butt. I kept asking him if it was his butt (freaking out that his constipation issue led to a tear w/ internal bleeding!). He said no.

This went on for 5 hours, every 10-15 minutes. He would get comfy, you thought he'd fall asleep and then he would contort his body to push away pain or whatever was going on. Then once he fell asleep it occurred every 40 minutes. He wasn't in overwhelming pain, with screams and uncontrollable rants, but it was different from what we had experienced thus far.

So G and I did not sleep much at all. He woke in a decent mood but ready to hit the couch again. I made him walk to the bathroom to try potty, put his clothes in the hamper and to the couch once we reached the main floor. He was eager to rest. I thought for sure he would take his first nap within minutes of my departure. I determined on my drive to work that I was most def going to put a call into his nurses. I needed to find out if we could administer some pain relief, just in case this new reaction lasted all day long or stole another night of sleep from him.

By 8:30 Mamac called me stating he was shaking. I knew he had received his Pro-Air from Charito before he left and sometimes that can do that to him. It is a steroid. It was occurring whenever he held his cup to drink his milk. As we were on the phone it subsided. As if I dont have enough to worry about from work. He is on my mind all the time! I worry so.

Then she called to say Caden was gagging. Huh? I told her to feed him and let me hear what he was doing. Ah, he was simply reacting to the first nibbles of home-made breakfast---pears. Much diff texture than store bought. I stayed on the phone w her a bit longer and before she knew it he was chowing down. It just took him a few bites to realize it was the same fruit he has always enjoyed just felt diff on that sensitive tongue of his. As if the mommy guilt isn't bad enuf in me for NOT home-cooking Caden's meals, here he goes reacting not so excitedly about IT WHEN I DO! I can't win! And to think I was going to make him some carrots tonite!

When I finally got the chance to call the nurses about G and his sleep-deprived evening I was so relieved I did. Nurse Jennie's first question was to confirm whether we had finished up our Dexamethasone Monday pm. Yes, we did. She continued to explain it as withdrawal. His body is simply going thru withdrawal. How sad for my 2 yr old. Think about that! That little body. Ugh. She asked if he was having some shakes at all in his arms or legs. I concurred. Yep, withdrawal. And she agreed that he has been really good about locating his pain points and from the kind of night I described to her it indicated that everything was going at him at once. Very typical reaction, just not one we had been a part of before. She told me if he seemed to be heading toward a similar evening tonight we could give him some Tylenol. With fine print instructions of course, it is never that easy! We can only give him the Tylenol if he did not have a fever, even the slightest. We don't want to mask anything else brewing. An epsiode like last night could go on for a few more days til his body adjusts to being off the steroid. My poor guy!

And we also talked about stools. As long as the blood I see is bright red it is new blood. Most likely an irritation tear or swell he caused while pushing on Saturday and Sunday. If I see dark red or black blood then that is a sign of internal bleeding (old blood) and we need to call them immediately. New blood is better than old blood. Got it. Now let's hope I don't see much more of any blood!

But this story really does get better! By noon Mamac called me again. But it was actually G on the other line. He gleefully told me, "I play trains mommy! I walking in the kitchen! I watching movies! I eating and eating (and then named all he had eaten). I use my muscles!" He sounded great! He was so happy to talk to me. And before he handed Mamac the phone he said, with his sweet voice, "Mommy, I love you so much!". The tears were forming when he was sharing his day and those words turned the faucet on! Oh, I love my sushi!

I left work on time to help out in Triston's classroom. And to take a peek at his Feeling Journal (the school version). He shared some deep feelings with Mrs Curtin in school yesterday and with myself on the walk home. I wanted to assess the situation. After our chat we headed next door to the other 4 yr old prek room for their combined cooking lesson. It was really nice to be elsewhere. Triston had no idea I was coming and he was surprised to see me. Happy, too. Another guy I missed so much today.

As soon as we walked in the door Grayson lit up! My boy was back in action. He has been taking his time moving about the living room. It is pretty clear he is not as achey as he was. He has some trouble getting up from a seated or squatted position (we have seen that before) but walking around just fine. He tried to run and dance when a fav song came on but immediately fell. He even has some trouble lifting his foot up to step high. One thing at a time baby boy!

Oh, and I was also greeted with the typical ginormous smile from my littlest. Caden always spins that frown upside down! He cracks me up. The one who has no clue that my mind raced in a million diff directions today, I worried from here to the Arctic, and my emotions had to remain bottled up for the most part. He is so innocent, yet so therapeutic with one simple smile. Luv him!

And just bc we are off the steroids DOES NOT mean we say goodbye to the steroid - chunk cheeks just yet,

Gotta love it!

That was my Tuesday...it felt like a whole week wrapped into one day. How was yours?!

AND I got one reprot card done...13 more to go!

Week 25

Jan 24-Chemo Monday
I was prepped for a transfusion day, just in case. Relieved to know it was not needed. His counts are holding strong.

WBC-1.87 (went up a tad)
Hgb-9.1 (came down a bit, but tight number considering what his body went thru last week)
Platelets-433 (went up!)
ANC-690 (was 580 last week, so nice to see)
Weighs-20.7 pounds (Gained 5 oz in a week. Think it was the corn dogs?!) and 33 1/4 in length

All the descriptors of his past week that I gave to his drs today 'are to be expected'. Nothing out of the ordinary. They were pleased he was eating n drinking. Number of naps did not surprise them. It is what this phase is all about. Very similar to flu -like or arthritic aches n pains. Thank you, steroids. In fact, my rundown of Thursday thru Saturday was assumed to be what Charito and I were thinking as well-a dip in platelets. But they are looking good today (all relatively speaking of course).

The best news of the morning-we can take G to see Disney on Ice this Sunday. Even tho he is borderline neutropenic they all agreed he needed to get out. Why deprive him if he is not vomiting, bleeding or diarrhea. They probably also figured he will be in access mode all next week which really limits his physical activity, so why not?

But here is a lowdown on our morning-
Grayson and I were pretty restless last night. We were up just cuddling from 1-3 am. He has been starting out the bedtime in his own bed for weeks now but by 3 am or earlier he is usually in ours. This phase has led to a light sleeper. It was fine with me last night bc I was really concerned about his poops.
WARNING-I AM ABOUT TO TALK POOP-WHAT MOM DOESNT? IT IS GONNA GET GRAPHIC.
He ate so much cheese (did I write about this already?) Thursday and Friday that he was REALLY constipated Friday nite. It freaked us out. He was really straining and his Saturday poops had traces of blood on the outside and when I wiped. You can't help but wonder if there is a tear or just irritation from the firm poops. And if platelets are low whatever the source of blood, it will continue to bleed. Then the Miralax didnt seem to kick in until Saturday evening either. Needless to say, he was very uncomfortable. Small but + fist-sized firm poops= uncomfy boy. There was no missing the signs that he was ready to poop bc he would yell for us to make it an easier process. To ease his positioning we put him on the toilet to help him bear down and he pooped in the potty! A first! He seemed excited. But unfortunately bc he is not craving chocolate this week he could have cared less about his reward-M&Ms. Too bad. But since then he has been willing to sit and try w each new poop, even if he has already done most of it in the pull-up. Oh that's right-as soon as he pooped in the potty the first time I gave him a Cars pull-up and he was MORE excited about that than the chocolate. So, I am riding that wave for now. Whatever gets us closer to it. Like w T, I am taking his lead and running w it. Think I'll be picking up a potty chair for living room so he can make the moves on his own, and it will be easier on any babysitter rather than rushing him upstairs in time (we dont have a bathroom on main floor). We actually witnessed a huge tantrum bc he wanted pull-ups on all weekend. I'll take it!

We were up early dealing w poop (Miralax kicked in big time) and whiney SHRIEKS for corn dogs. He downed that thing like nothing. He should be the new contender for the amazing hot dog eating contest! He was more than upset when I told him he couldn't have cheese. That led to other whiney statements...really anything he could think of. A different hat, bringing random food items to Princess Jennie, wanting Aerum to read him a book, etc. Anything he could think of he whined and demanded occur immediately. Even 50 seconds in the microwave for the corn dog wasn't fast enuf! These are my mornings!

Triston really wanted me to take him to school today. So we rushed around (packing n such in case there was an all day transfusion), I dropped him off then headed to Dr Kwon's. The whole ride there G hunted down trains and looked for Mcds signs. He was in a good moood. I put a mask on him when we pulled into the parking lot and we took a delicious break at the Au Bon Pain bakery inside the hospital. He wanted to get Princess Jennie a cookie and I needed coffee! Harlem Ave was a mess and I was not going to try and truck my way to our local Mcds and try to explain to G that they weren't making chicken nuggets yet! He eyed a spinach filled croissant and pointed out the coffee section to me. The kid know the place by heart. I bought him his "sandwich" and we mosied on up to Kwon's. That is when the crabbies returned. He repeated he wanted to go home. I had to carry him in. He really has caught on and can reach into himself to determine where he would rather be when not feeling up to par. So sad. But once we got in and saw Jennie n Aerum he bucked up and did his job. He devoured that croissant filled sandwich. I even tried to get him another one after clinic and they were sold out. Then he curled up on a chair and rested while I vented to Aerum about some of what has been on my mind. It helped a bit.

Today was just a CBC, blood draw. I just needed to be prepared for a possible transfusion or a chest xray bc of how gunkie his cough got over the weekend. I swear, I feel like every 5-7 days his cough is gunkie again. Asthma + leukemia+winter=pneumomia fears. I had to increase his Pro-Air ( albuterol) to manage it. No wheezing detected this morning. Kwon says he sounds clear.
But we did have a new "thank you, steroids" moment. It took a while for a blood return (when they use the syringe to extract the blood to be examined for counts or to check the line for clarity). His line was flushing fine but it took several pumps to extract blood. And when it did come through it looked foggy to me. Jennie explained it was bubbly bc of all the pressure she had to apply to get it out. She immediately asked if he had finished up his steroids for the week prior. I replied yes and it was an aha moment. You see, the nurses have a theory. With the water retention and swelling that the steroids place on the body's joints n mucles they have noticed that the swelling effects the whole body as well. Thus internal swelling along the port line, arteries, you name it-effects extraction. It is just slow moving and she tells Grayson "we gotta wake up your port". It is not a stressed swelling that I would notice along his port site. Just more little things that can go on internally. No big deal. Just made me think of last night when he woke n told me his "port hurt". I checked it and it was red bc the metal button on his shirt was lying right under the port along the metal lining. We changed his shirt and he said it was all better. Jennie assured me there was no connection w the blood return. Just annoying that's all.
We took out his needle and attempted to leave the exam room. He insisted on being carried. I insisted on finishing my coffee before I carried him again. Doesn't he know by now that mommy always wins these battles. I understand you are achey and playing n running is not your thing this week but you WILL do some walking. He cried the whole way through the hall. Kwon just laughed. Once he made his trek I picked him up for the remainder of our trip to the car. That is all I was asking of him. Done!

Next Monday is quite the day. It is our halfway point in Delayed Intensification. That is pretty big. Even bigger-it will officially be our 6 mos Leukemia anniversary. All I can say to that is WOW. I won't even get into the sad and happy of that. Later.

He is scheduled for a LOOONG day (if counts hold strong we can proceed that day). He will get a IT MTX (spinal of methotrexate); push of Cytoxin and all day flush to check urine output (we will be there to at least 4:30 pm while he is pumped w fluids to flush out that cytoxin); a push of Cytarabine (AraC). That AraC means he will come home with his port in access mode (the needle still in and tubey hanging out). I will have to administer the push of AraC each night the rest of the week. We will also meet our new drug-TG (Thioguanine-an antimetabolite that resembles normal cell nutrients). The side effects are not fun to read about and let's hope he tolerates it. he is on it for two weeks straight. Anything new is always scarey. But no more steroids the rest of this phase, one more PEG injection, two more Vincristine pushes, an additional week of AraC and one more IT MTX. Seems so quick when I tally it down like that. Maintenance is right around the corner.

So, what do I hope for for next Monday? That his platelets are over 75 and ANC over 750 so we can proceed w the long day planned. No stalls now.
And my hopes for this week? His appetite continues. No more bits of blood in his stool. No constipation. The cheery mood he is in as I type this remains (for most of the time). I get (at least) my first set of report cards done without losing my insanity. And that he remains "well enuf" to see Disney on Ice. The last time we were out as a family was Christmas day and the time before that, maybe November? I would have to look it up. The time before that Sept 4. With so few and far between it is easy to remember the mixed emotions on those days. It'll be nice to spend it with family, too. Auntie Amy (baby belly Jack), Uncle Neal and Ayden are joining us. Keep your finger crossed for us, K?

Bros

Ooops! Caught them jumping over Caden! The hysterics belting from Caden's belly kept me from checking in on the danger! He thought it was hilarious, I thought otherwise.

Kisses

Taken January 16th (before G was couch-bound w the latest chemo treatment)

Ah, those smiles!

Surrounded by...

CORN DOGS!

We made it to the weekend. No vomit. Limited diet of corn dogs, milk and mozzarella cheese. Tomorrow I will search for THE noodles at Target, maybe I bought them there? But overall, I am pleased with his eating habits. At least he is eating and drinking. But with his choices comes constipation. I haven't whipped out the Miralax since October and boy did he need a dose yesterday and today. When I wiped there was a bit of blood and it did not appear to be in his stool. So, it is most likely from the straining he is doing. You should see him bear-down on something to push (the couch, fridge handle bars, me!). As long as the miralax does it's job we won't have to worry about internal bleeding, espec if platelets are low. Fingers crossed.

We also have been on watch for bloody noses (another one of those low platelets scares and humidity vs cold vs anemia vs his cold boogers making it worst). He got a good one out of the blue last nite ( I was off on my date w Triston and Charito texted me). I was willing to leave the movie if it didnt stop but it was under control pretty quickly. But once he has one we monitor him bc his cold boogers/runny nose can push out any clot that formed in his nose to stop the bleeding. Annoying! Luckily any bloody noses we have encountered have occurred within days of our next clinic visit. We don't have stress over a week's time, just a couple of days. And if a transfusion is necessary that is days within reach, too. We learned quickly that pressure to the bleeding nostril instead of the traditional pinch is best for him, as well as ice in more serious bleeds like the numerous times he busts his lips!

Side note-Charito just informed me (Boys and I just woke from naps) that he is headed out to pick up Bryley from the spa. Huh? Yeah, instead of just taking her in for a nail trim (weeks overdue bc we have def neglected her) it was worth the deal for nails and a bath, too. I had to chuckle, bc not only does our baby girl deserve it BUT WHEN is it my turn?!

Our weekend has been full of stress, emotions, lazies and food. This week in particular Charito and I are dealing with our stress and anger by eating-ALOT. We just ordered pizza and picked up movies for tonight. It is all we can do distract ourselves. As if the kids and their upside down moods are not enuf. Unfortunately we are awaiting some disturbing news of a close family member and it is eating away at us. I will share and vent the explosive emotions I am going through once I have more information to pass on. Just pray for us. A scary life atop scary news is never settling.

We are gonna eat and soak up some family time now. As much as I love it, our weekends are getting pretty monotonous. No adventures, no outings, neutropenia and cancer running our lives. Getting old but I know one day it will be better. I just wish I could hit the fast forward button sometimes!

Week 24 Jan 17-23

It has not been the best week for Grayson. He is so sleepy. Taking 2 two hour naps all before I arrive home. He is eating a bit by 9 am (bologna, noodles, yougurt or cheese). Then he drinks the rest of the day until another hunger surge hits around 3:30 pm after he wakes from that second nap.
He hangs out on the couch and barely gets up to play. His joints must be sore (steroids will do that). Or nauseaus? To cover all bases I have lied a towel over the couch to catch any food crumbs or possible vomit (hasnt occurred yet). I have also brought out the Zofran (the anti-nausea med I havent had to administer since Christmas and before that August). I give him a dose before I leave ( along w his asthma meds, Nystatin and Dexamethasone steroid). Then another when I get home. It is one of those drugs that doesnt hurt to give even if nausea isnt the problem but better to curb that feeling just in case. It is like problem-solving/trial and error. You just cant tell, to be honest. Even though I can get him to laugh n smile when I need to, he is so blah. So drained and beat up looking in his face. Like all the energy has been drained from him by some evil alien. It is sad.
His asthma has really been a stinker this week. We are all fighting colds and he seems to still have a tiny bit left of it. His cough is off and on all day long. I have had to administer his Pro-Air more than twice a day to keep up with that cough which at times are actual asthma attacks. But at least it doesnt seem to peak until the early morning when he wakes and near bedtime so I am here to manage it.
It is all so hard to watch with so much else going on. Work is draining me more than I could ever imagined. And I haven't even begun the two types of report cards that are to be completed by next Friday. Not to mention my endless list of things to do since my return. I bring work home everyday and do not get to it before I want to cry from exhaustive headaches.
Triston is having a nice week at school. No emotional issues at school (frustration levels, stressful moments, trying to control situations) or crab ass moments here at home. He was told if he had a good week at school he and I would go on a date. I am looking forward to it. He told me he wanted to go to a restaurant and sit across from each other like other couples do". He has been super compassionate and lovey dovey with me this week. My biggest baby boy!
Grayson has also been Mr. Affectionate. He wants hugs, kisses and cuddles often. You can tell he just isn't feeling well. And when he doesnt look well we can't help but wonder if a fever is just around the corner. I am just not up for a impromptu hospitalization. Of course, I will always do what is best for my guy but we would really appreciate it if it just would not surface anytime soon. So when there is no fever you can't help but wonder...

a dip in platelets (even though his lips are nice and pink or bright red meaning they aren't dangerously low)?
low hemoglobin (and yet again-has some energy and good complexion)?
joint and bone pain? he does not like to be touched or bothered w. Scolds T for even coming near him! Physical battles to change his diaper when the past mos he has wanted them changed immediately bc it stings or is so uncomfy on that fat-free butt of his
nausea?
or just plain chemo drugs taking their toll on him this week?
or all of the above?
AGAIN, more unknowns.

But on the plus side;
he is eating (not "hide the food" steroid eating like in past steroid weeks but we will take what we can get)-this week taste buds have done a 360-rice, noodles, corn dogs-bread n butter. Blander foods.

drinking (almost 9 glasses of milk a day)

peeing

pooping

interested in tv and reacts happily to his favs and calls out to me to share in his excitement

hardly played off the couch today

laughed along w Bryley today as he played tricks on her

still inquisitive-the town nosey rosey asking me what I am doing at every turn

expressing emotions-no matter how drastic the mood swings are. I have been late to work the past two mornings bc he has tantrummed over one thing or another. Fits that make me jump in fear he is gonna hurt himself. He is so pissed off. Then the minute I get home it is waiting for him to wake and dictate what he may possibly have a taste for. I hate catering to his every need but food is that important and when he IS actually hungry you gotta jump on that wagon bc it passes so quickly, especially if nausea is the culprit. It is beyond frustrating. This evening I had 3 different noodles, rice and a corn dog all made within 20 min bc he has no patience and I can only take the screaming for so long. Wierd how I can tolerate at any amount at work but in my own home I need it to end. I am that dwindled of patience by that time of day. And this was all after I had run to Jewel in search of THE noodles he was consuming w/ out hesitation this morning and yesterday afternoon--and nowhere to be found! I cannot even recall where I got them! Some basil pesto encrusted type organic noodle. Who would have thought THOSE were the ones he'd be screaming for!

Maybe the weekend will be better. More energy. A typical train crazy kinda weekend. Hmm?

ANOTHER Moody Monday

January 17, 2011
The past two weeks of the Delayed Intensification phase have brought on fabulous Tuesdays thru Sundays (great mood other than steroid induced mood swings here and there AND a healthy and plentiful appetite thanks to steroids), but WHOOOOOOAAHHHH IS ME to Mondays. It obviously stems from TIRED and STEROIDS but WOW! It is not like I am prepping the kid for a spinal and yet he is tough to get out bed and get going. We didn't have to avoid meals/drinks for 13 hours. He was allowed to eat breakfast and drink all he wanted. We just had to apply the magic cream on his port and walk out the door. He acts just like anyone of us trying to get a move on on a workday Monday. Slow going and crabapple city! He truly wants to stay in bed and I sure as hell don't blame him. Makes me wonder if at the young age of 2 this is all getting old for him?

Once we get there is he is okay but then little things that usually don't upset him do. Like accessing his port-past two weeks he has been whiney about it, while in past months he insists on helping. And he hasn't been as playful with Aerum (child life specialitst extraordinaire). He is content with a book in my lap, a nap or today it was copying Triston w the Leapster or Leapfrog.

Today G wanted to be like T but also on the opposite side of the room of him. True love-hate relations today. You know how when we are crabby and over the top frustrated and we take it out on our significant others? That is how Grayson handles it all. He REALLY does take it out on T. T could do nothing wrong but walk past him and G whacks him. His own personal punching bag. Thank goodness we have raised T to tell us instead of retaliate. It means I hear, "Mom, he did it again!!" a million times a day but whatever.

And then to top off our visit today he threw the biggest tantrum when I was finally able to say we could go home. HUH? PMS x 100 I tell you! I give him what he wants bc all he did was whine he wanted to sleep in my bed and he fights me to leave. A full on tantrum w spaghetti arms and body making it ever so difficult to get him dressed. You know the kind! Even Triston told him, "With attitude like that I don't think you are going to the bakery with us!" He was right. G did not get a cookie and T did. I was the mom walking the halls with the screaming boy in the stroller. Thank goodness I brought it to carry all our crap bc there was no way I was going to carry him out of there and get beat up along the way.

Little did my audience know my boy had an excuse. The worst and yet most acceptable excuse to act the way he did. Cancer. I didn't care. I didn't care what people thought. They don't ride this rollercoaster with me. They didn't wake this morning hoping this cold doesn't get the best of them. They didn't have to use up their day off doing chemo crap. Bringing their 5 yr old along in order to take advantage of every minute of the day to spend time with him while continuing to remind him of what his little bro goes thru every Monday. These gentle reminders to support him thru this as well. Leaving their happy 6 mos old at home w the hopes he would stay on schedule as he fights his cold. They may not have had the horribly emotional weekend like I. Believe me-I would have preferred to be at a museum with my kiddos like most parents do on days like these. Gosh, I miss museums so much. Yeah, I could take T but it wouldn't be like old times w/out G. I miss his awe as he reacted to both the exhibits and Triston's expressions. So innocent and so uplifting to look to his bro for reassurance.

So, needless to say it was a pretty blah day. There was good news-great counts for the most part. No need for a blood tranfusion which is always good considering the time it sucks out of a day. But I packed for it just in case. Left directions with Mamac for the baby just in case. Just in case we weren't home until after 9 pm.

Today's counts:
WBC-1.71 last week it was 6.38
Hgb-9.3 last week it was 9.5
Platelets 345 last week it was 647
ANC-580 last week it was 5, 790 (check out that plummet!)

His counts are def jumping all over the place during this phase.
Cheat sheet:
we want Hgb over 8 or else a transfusion
platelets over 20
ANC (neutrophils) over 1, 000 otherwise he is considered neutropenic and has little helping him fight off infections

So most numbers held well but we really need to watch that ANC this week. I have all of us wearing masks this week. My prayer for the week...no fever. Let him fight off this cold and fussy-acting asthma ( observed since Saturday) w/out any hiccups.

But as much as I am complaining I am grateful for :
good moods
smiles
laughter
early bedtimes a few times last week
fantastic appetite of cicken, steak, potatoes, noodles, and broccoli
consumption of something other than milk-root beer floats
two unexpected play dates for either of the boys w healthy kiddos
hugs
cuddles
egg nog (my drink of choice this past week)
but something tells me wine will be this week's choice

So, readers-that is the start to weeek 24. We finished our day w Mcds lunch, naps (which made all the difference in the world for Grayson's mood, as he runs around goofing off w trains right now), Mythbusters and Wild Kratts and an early dinner. We survived an irritable Monday and hope the week gets a little less irritable. At least for the boys. I have way too many report cards and 4 mos of paperwork to catch up on to include myself in that happy boat for now. But someday...a
blissful cruise awaits me. I guarantee it. You hear that, honey! I will even settle for a Disney cruise at this point!

What it looks like...

The whiney, attention-getting, fake tantrum!

(jealous/mad/silly bc I stopped reading to him so I could feed Caden)

OR

From that...

to this in a matter of seconds...

over the littlest of things.

PMS x 100

I can't help but laugh!

Thank you, STEROIDS!!!

Welcome, Delayed Intensification phase!

Moody Monday

January 10, 2011

Everyone was moody this morning. Especially G. Thank you, steroids. It was the first time since August he did not want to go and see Princess Jennie. He was clearly very tired. So was I. My mind raced last night. I could not turn it off. He was very restless last night. He took two naps yesterday and still asked to go to bed by 7:30 pm. He tumbled around for 2 hours before passing out. That boy ran himself tired after a week of WILD CHILD behaviors. He was a happy, active 2 yr old doing his 2 yr old thang. Yesterday and today he paid to play. He is a true crabapple today.

He walked into clinic whiney. I carried him while the nurse assistant pushed the stroller. He was definitely not in the mood for any socialization. No running hug toward Jennie today. He slept during his treatment. A 30 minute push of Doxorubicin, push of Vincristine and blood counts. I was hoping all the while there would be no transfusion needed. I had no backup plan for T afterschool. I was clearly not home and had Caden with me at clinic. Counts were great. His ANC (neutrophils) jumped from 950 to over 5, ooo. Hgb 9.5 and WBC over 6, 000. No transfusion. A sigh of relief.

So while he slept, Caden ate and ate. He was such a good lil boy. Smiling and grinning at anyone who entered the room. Doing his job to greet accordingly. My social butterfly.

We left clinic after 1 pm and had just enough time to run to Target. The kid plowed thru the bologna we picked up on Saturday and we obviously needed more or there would be RIDICULOUS tantrums had. And with an ANC of 5, 000+ the boy deserved to get out!!! He had fun. The minute we left clinic his mood changed and he was his goofy self. He wouldnt shut up in the car! Why this and that and dissertations here and there. Too funny.

I even had time to get him home for another nap and sit on the couch for some peace and quiet for about 30 min before T walked in the door (I had his friend drive him home for convenience sake since I KNEW w G's morning record he would due for another nap and I was not about to wake him to pick up T). Then T and I had our own time together reading and chatting before the other two woke. Because as soon as all 3 are in action the night seems endless. The only reason I have time to write this is bc they are sucked into Thomas (a holiday dvd G saw at Target that I once again forgot to take out of cart at paytime-lucky for him it was on clearance for $5. SEE WHAT I HAVE TURNED INTO!! I AM BUYING THOMAS DVDS!!!). They are acting out a scene while Caden laughs along from his exersaucer bc he will laugh at anything that comes out of T's mouth. T could sing a swearing song and Caden would go into hysterics instead of drop his jaw in disgust.

So, we survived Chemo Monday with huge cases of TIREDS!

That is my Monday for ya! How was yours?

Grayson is....

SOOOOOO LUCKY TO HAVE THESE HAPPY BROS IN HIS LIFE! THEY THINK THE WORLD OF HIM AND VICE VERSA

Delayed Intensification

Snuggie time

Good bye Interim Maintenance-----------------Hello Delayed Intensification!

We are just one phase away from MAINTENANCE!!!!!

This next phase is 63 days long. So, if there are no bumps along the way we should finish up at the end of February or so. His home cocktails for the first 29 days include:

4 1/2 tablets of Dexamethasone (steroid) a day (morning and night)

1/2 tablespoon of Nystatin 3x day

1 teaspoon Bactrim Mondays and Tuesdays

Zofran (antinausea) when needed

We are also keeping up with nebralizer treatments and all asthma meds

We began Delayed Intensification on January 3rd. Right on schedule! That is a big deal in "chemo time". This phase consists of Monday clinic visits. Any need for a blood transfusion indicated on Mondays will be taken care of that day. I no longer have the luxury of taking care of them early Tuesday mornings bc I am back at work. That makes for a LOOOOONG Monday if a tranfusion is on the checklist.

The first 29 days of DI (during a weekly visit) require the following to be administered:

Vincristine push through his port (a familiar drug to us)

Doxorubicin (bright red IV drug through his port)

1x = Initial start of phase was a Intrathecal Methotrexate (spinal tap and push of drug, VERY familiar drug to us-remember our last phase of 24 hours straight of this stuff?!)

1x = PEG injection in his thigh muscle

He is on the steroid for 7.5 days (every other week)

So far in this first half (Jan 3-9) we have seen a happy boy! Playful and HUNGRY. I knew the steroids kicked in as soon as he asked for Ranch dressing with his corn dog. Just like last time. Food choices include: hot dogs, corn dogs, bologna, alfredo-sauced noodles, buttered ravioli, plain bread w lots of butter. He has lost his taste for sweets. No obsession w M&Ms this past week. And we cant seem to pour the mild fast enough!

He has been in a really good mood and I am grateful for that. He is really loving up on Caden this week. Very concerned about him. The steroids have made him a crabapple in the past with unpredictable mood swings (try tracking that w the regular two yr old antics alongside it). But so far he gets really crabby fast and is clearly tired. He has crawled up on the couch and taken a nap each day since I returned to work (last Tuesday, Jan 4). And over this weekend we took family naps to care for his tired needs. So as long as we watch for those nap signs and help him give into them he remains a happy camper. I cannot complain. I love seeing him active!!!

The second half of the phase consists of (Beginning day 29-most likely first week of February):

Day 29 and 36-Intrathecal methotrexate (spinal tap and push)

2x-Vincristine (push)

1x-PEG injection

Day 29-One really LOOONG day of Cytoxicin (that drug that only takes 30 min to administer thru IV put all day to monitor his urine output. That is the kinda day spent in the Day Room at Clinic. We usually dont leave until after 4 pm)

2 periods (4 days straight) of our fav (insert sarcasm here ) Cytarabine (AraC)-the type of drug in which he is sent home with his port in access for me to push thru his port at home right before bedtime. It is no biggie to administer it's just having his "tubies" hanging out and needle inserted for days straight when he is such an active boy. Nervewracking. Can't tell you how many times I tell that boy to stop jumping on the couch!!

TG / Thioguanine-for 14 days straight (a new drug to us) . It is an oral chemo drug that interferes w cancerous cell growth. However while doing that it releases toxicity (the killing of those cells)- uric acid, potassium and phosphorous levels affecting kidney and liver function. It also decreases appetite. So we may see a drop in that surge we enjoy seeing while he is on the steroids.

No steroids during the second half of this phase.

And of course we continue his Nystatin (mouth sore prevention n treatment) and all asthma meds

So, there's a sum of what we are up agains the next two months. Help us pray for minimal to no bumps in the road. I don't mind transfusions bc they keep that bone marrow healthier but anything else is not invited on this trip!!!

Let you know how tomorrow's chemo treatment goes soon!

Full Circle, Mirrored Mothers

Our articles framed together

I wanted to give my parents something special for Christmas this year. They live out of state and that has made this all much more aggravating to deal without them to run to. I wanted to give them something that put a positive spin on 2010 and what we as a entire family have suffered through. As I was mentally reminding myself to pass on one of the many newspapers I had bought of G and I in the Trib it hit me! I should frame it. Then I got hit again! AND frame the newspaper article pic my mother and I were part of. Brilliant!!!! Both pics captured bittersweet moments in our lives, without a doubt.

Why so meaningful?

30 some yrs ago I was born 3 1/2 months premature. I was supposed to be born on xmas eve and instead was born mid -September. I did not come until....wait for it.... Christmas Eve (when I finally reached the discharge weight drs were comfy with----3 1/2 pounds). I was born weighing a pound an a half. I fit inside a Dunkin Donuts box (ask my aunts who placed me there for laughs!). I wasn't given that home-for-good-blessing until my parents wavered thru the shock, pain, anguish, unknown this and that, surgery or not moments, and utter fear of my death too many times. I am actually baptized twice bc of that fear alone. I came home in the most beautiful hand-made dress from a devoted nurse. My mother's shoulders to cry on and support systems for so many weeks ( I have those same people in my lives today and many have become friends I can count on. Nurses are very special people!) I was given the title "High-Rish Nursery Queen" and survived, as my parents watched many preemies pass away as their turmoil continued. And all this occurred in one special place - Lutheran General Hospital. Hmm...I know that place pretty damn well, too!

30 + years ago

Left-September Right-November
1 # 8 oz over 2#

My mom and I have spoke of the inevitable moments relived as she walked those halls and entered a hospital room that housed her 3rd grandbaby the week of diagnosis. And I assure my father felt the same even though he did not discuss it.The daddy's girl in me felt it with every inch of his hold on me. It took weeks for me to see the 'full circle' aspect of all this, the mirrored lives we were leading. It scared the hell out of my parents, and I as well. Was it fair that I was to live the same fears as they? Of course not, but here we are. As the drs said, it was nothing we did. It was nothing my mother did. Grayson and I were just chosen.

Every Christmas Eve I sit in front of my tree with a hot cup of anything and think back to my childhood. Gracious memories, endless ones. I had the most wonderful childhood and on. I love my parents. They made me a Harper and Harpers fight. It was the first line my pediatrician back then muttered to my parents after his first evaluation of me-"Forget what they told you. Sara is not going anywhere. WE have a fighter here!" I still remember that pediatrician, Dr Metrick. He continued to be my dr until I turned 16. His name is forever remembered throughout that hospital today.

And to think-I survived back when the technology that exists today was none to be found. And Charito and I are constantly reminded by medical staff, friends, victims, and strangers of how far they have come in the advances of Leukemia research and treatments. That is today. I am thankful for today.

Well, we made a Carper and Carpers fight.

And thus far G has proven he is a fighter and will continue to be.

I believe it to my very soul.

Weeks 20 and 21

Having fun with Thomas stickers...think he took pointers from T on "silly sticker behaviors" . I can recall the first time T stuck stickers all over his body, including his penis! Pushing along that IV pole w/ ease. He is better at it than I, the only reason I take over is to prevent his toes from getting crushed!

Notice his left eye? Even as a baby his left lid would droop whenever he was tired. Belmonte determined that lid was actually housing more skin than his right. When it is at it's "heaviest" it never actually impedes his vision. It is just noticeable when he's tired and more often during these past few mos at random times of day. We will continue to monitor.

Choco gets spoiled with a gigantic Snickers ice cream bar. He ate half and passed the remainder onto me...I guess I HAD to eat it, right?

I love these next two pics

(seeing as I can hardly get Charito into any!)

One of the best things of this hospital stay was the several times daddy came to visit. G really missed a great deal that week. As you can tell he was so excited to spend time with him. And to get that solo mommy and daddy time. Spoiled brat!

Chowing on the already made, ready-to-eat gingerbread house!

And obviously cancer is NOT going to stop him from being a typical two-year old!

See below:

Cupcakes! Luv his old man seated pose.

Luvin' up on the puppy he received from Nurse Shell. He slept with it! He kept asking it if he wanted to see Bryley!

It REALLY was a pleasant stay that week. We had face time w almost ALL of G's fav nurses and child life specialists who worked their butts off to get us home in time for xmas. And they sent us home with unbelievable goodies for the boys for xmas. I was even able to vent, cry and laugh with theright person to fit each of my emotional needs. All the others were good, too, but that one symbolized the end to Interim Maintenance phase. It was a biggie. He amazed us, as always, thru that phase. As fearful as we were as a family for those weeks of on and off again hospital stays-it flew by. With no bumps in the road! Who could ask for a better Christmas gift, New year wish!? The following week at home (we made it home the day before Christmas eve) was full of family time, food and tons o hugs for all our boys. So much to be grateful for. It really was the perfect end to a toilsome year.