Week 28 part 2

In case you were wondering...

G is all good today!

No fever of any sort since Tuesday. No diarrhea either. Crabby mornings since but rest of the day decent moods. Eating very well and still loving his milk. He got a shot of Miralax this afternoon bc he has not pooped sinc e the diarrhea bout on Tuesday. He is napping for up to 2 hours and going to bed without frustrations. He is actually a silly clown and literally laughs himself to sleep bc he is goofing off in our bed. So it appears he was most likely trying his hardest to fight off some type of virus and succeeded. Now all we have to do is make it to Monday counts and see what those have to say.

Caden had an irritable day. Hopefully just a cold or teething that is interrupting his meal completions. But he is drinking all of his bottles and emptying out his pipes. Right now he is laughing hysterically at T so that is a good sign. Maybe he just needed mommy time.

Charito is loving being home with the boys during the day. He needs it. But right now I have him on the play mat rolling, spinning and drooling all over the place. He is ripping the ABC s puzzle mat pieces apart with pride. He is content!

Triston has a bit of a runny nose but great mood. Awanas trial #2 was GREAT, GREAT, GREAT last night. I could not go with him bc Charito was working but lovely Auntie Najette played mommy eyes for me-she understands me so well. He remembered all his verses, received a "steel key" (for remember the key verse of the evening), vest and chapter book. Kinda like moving up to the next level. Before he left I told him it was okay to not know everything there. There is time to learn it all. But it sure gave him a boost to have learned the whole "mini book of verses in one week and carry around the same gear as all the other 5-7 yr olds next week. I am SO PROUD of him! I couldnt wait to present him w the vest and chapter book (that Najette slyly passed off to me at the front door when she dropped him off). His face exploded with a huge smile and he just HAD to put it on AND button it up right then and there. He immediately ran downstairs to show Charito. It was hard for me to fight back the mommy waterworks but I did it. Our tears and fears of last week saw a little rainbow last night! That's my big boy!

I am officially exhausted today. Drained of what little energy I put into myself to get thru the week. I reheated a frozen dinner I made last week (when I had my short lived cooking spurt) and we are all off to an early bedtime tonight. Friday here we come!

February 14-20

What a week and it is only Wednesday! We may not be doing anything physically exhausting other than playing parents and career builders but monitoring Grayson's every move and behavior is what pushing it to the max.

Most of his counts were good on Monday expcept ANC-a low 250. That means he does not have much helping him fight off infections and viruses. He was scheduled for a PEG injection (his left leg, I alternate the leg each time) and count check. His cough got pretty nasty on Sunday and he woke with a runny nose on Saturday. Even though his cough sounded asthma related we wanted to be sure his lungs and airways were clear. They were. Dr Kwon listened to his symptoms and mentioned he is most likely fighting off a virus of his own. We were to monitor his fevers very closely the next week.

He hovered at an official fever (100.3) for two hours on Saturday right before dinner. Then probably had one in the middle of the night Sunday but I did not want to wake him to take it. It obviously wasn't horrendous enough to upset his sleep like the one Halloween eve. He had no fever while we were at clinic nor the rest of the night. Princess Jennie said to keep an eye out bc if it continued he would have to come in for IV antibiotics (and don't forget the 48 hours fever free rule before we could go home).

It really is a double-edged sword. Of course we don't want him to have a virus or stay in the hospital (not to mention the stress a two day or more stay would place on us in our currently increased chaotic state) but you do want him to be okay. If his body can't fight any sort of infection right now then antibiotics and anything the hospital can do to "fix" it seems to be the way to go. But do we also give his body a chance to fight what little it can? And I think that is what is actually going on. His body seems to be trying to do what it can.

Tuesday was mind-worrying draining. AC and Uncle Tim were here with the little ones (thank goodness!) and for sure the only thing on Charito's and my mind was when G's fever would appear. My many phone calls indicated he was barely eating for them, but at least drinking his usual rounds of milk and a glass of water. He was playful and goofy, having a great time with them. He even took breaks to rest here and there. Then I was texted he had a fever of 100.3 (ear thermometer). I had an hour before I was home and his mood was decent so I waited it out. When I got home and thanked them for putting up with my rugrats I took it again using the auxillary thermometer-- 100.1. It sat there for another hour and then dropped to 99. And in case you were wondering-we did not give him Tylenol. He is not allowed to have medications or herbals of any sort without dr permission. His mood never worstened. I was able to get him to eat broccoli and hot dog and even 2 more glasses of water. He was not miserable. Just tired. Early bed worked out well, when I was finally able to get him to stop clowning around and jumping on the bed. He truly has mastered the art of stalling! That clown act will suck anybody in. And how do I not allow it? Here we are fear of fever changing our plans at any hour and he is goofing off! That smile and laugh are priceless and have to mean not all things are bad, right?

But seriously this fever thing is such a GAME! It plays with your mind. Leaves you on edge. It is not like Halloween eve when it was without a doubt a high fever and with no signs of going away. He was clearly miserable and had us really worried. It was like all he wanted to do was curl into a ball and wait for someone to make it all go away. He clung to me and would not let go. That night there was no doubt in our minds that the hospital is where we needed to be. But this fever here and there business is frustrating. If it appears at all it lasts no longer than 2 hours and sits at the cusp. And yet his mood is good, eating and drinking well. He is all over the house chasing and playing. So is this what an attempt at his body doing some germ-fighting looks like? Princess Jennie said Saturday and Sundays occurrences are possible with "these kids". Leukemia will do whatever the hell it feels like. But if he takes a slide down we obviously need to call and get in. So, I guess we are doing all the right things thus far. It is just so nerve-wracking when his ANC is so low. AC and Uncle Tim were ready-made nurses taking his temp every 20 min. And I do all these little things to ensure it is not a "fake" temp-like not putting socks on him, making him wear short sleeves, no blankets when napping, not taking his temp after cuddling. Anything that may mislead a temp! Crazy I know!

Today, Wednesday, so far he is well. No fever either! A bit of a runny nose. He woke in a good mood. I got my usual hug n kiss and "morning Mommy!" But then he was not in control of the remote upon entering the living room and tears and crabapples ensued. Charito was home during the day and said it took him a while to bounce back from those crabbies but he did eat some. He also napped. When I got home, to he and daddy hiding under the blankets to surprise me on the couch, (and Charito left for work) I was able to get him to eat broccoli, pork chop, popcorn and noodles. He is on his 4th glass of milk and playing with Triston right now. Cough is still there but I have been on that like white on rice. He has been getting up to 4 saline nebulizer treatments a day plus an increase in his ProAir inhaler to manage this asthma kick up. I refuse to let this turn into RSV or pneumonia if I can help it. But when ANC is 250 I don't have much on my side to help me out. We are constantly washing our hands (see my bloody knuckles as proof), changing our clothes as soon as we get home from work or school, constant laundry and cleaning of mulitple surfaces, Lysoling (it is a word!), showering kids as often as possible, and wearing masks when necessary...

ALL FOR THIS SUSHI FACE!

Awe, I just overheard him ask T for a hug!

And then he yelled at Caden for dropping his bottle-G, the little dictator (that does no wrong himself!).

Vday

A little boy I know was loving his

Vday treats each morning.

I loved writing all the love notes!

Week 27 February 7-13

Or should I say WEAK 27? Seriously! How much can one person take?! I can usually remember a chemo week (bc everything is in "cancer calendar memories" these days) by one specific moment-what Grayson's super craving was that week, his mood at clinic, a new found goofy behavior, introduction or waiting for reactions of a new drug-SOMETHING! One thing usually triggers a memory of a specific week of the past 27 but this week did me in.

The list is unbelievable and extremely negative...but please, read on if you are in the mood for doom and gloom bc that is all this is. It is all I can feel right now. This is what week 27 brought to me. I don't even have a title for this post other than Week 27 bc that is all that comes to mind when I think of the past 6 days. Simply Week 27.



I am not sure if these ramblings will make any sense...I am just typing away.

• Remember "Pukey Monday"? Well, that ended on Wednesday for me! And NO I am not pregnant! A yucky stomach virus put me at home for 3 days. All the while worrying (and moping like a zombie with a headache so bad slime was about to erupt from my ears) who else may get it (praying it would be anyone else but G). How nice of me to wish that on my children and husband right? And you know how it is...Moms still have to be moms. I snuck a few naps in but things still needed to be done. Meals, laundry, Triston's homework, fill in the blanks.


• My motherinlaw's surgery went well but left us with a diagnosis we were not expecting. We are still trying to accept it and deal with it. Things have been pretty quiet around here. The surprise and pain are just not necessary for anyone and yet we have to manage through it somehow. More unknowns, more fears. When is enough, enough? Honestly!


• With our emotions feeling uprooted and unprotected we still had to go on with our everyday. But I don't know what our everyday is anymore. Just when I think we have a grasp on a "normal" week, routine, anything-it is shredded to pieces by something more upsetting.


• On Thursday, I was told my uncle passed away. I hadnt thought of him in years. Memories, questions and guilt set in. My feelings are none compared to what my parents have to face in the upcoming weeks. He had been my father's bff since age 5. But I was flooded with memories of many good times. He was the one who ventured out to open a restaurant with and only with the approval and assistance of my parents. Before long the place became a family business without it ever intending to. That little Italian place brought out skills every one of my family members we did not know we had. My mother became a restaurant manager-a fantastic one at that! My father a brotherly sidekick and manager of the bar and anything else that needed mending. My brothers were bus boys and handymen. I got my first waitress gig. Had it not been "family owned" I never would have attempted it. I didn't think I would be good enough. I loved it! I really was a great waitress!! It came so natural to me. Sometimes I miss it. It really was a good time. We rocked that place. And the people that became part of our lives then (even the oddballs) are memorable, right Robin?! Vita Bella will always have a tiny place in my memory file box.


• I am tired of being told that this Leukemia path will turn us for the better someday. Because you know what-until then I am miserable. Yes, you have read how I see the positive in each of my days here. And I always will. Each morning I question what the day brings but promise myself to hold onto a happy thought to take to bed with me. I will not stop doing that. But leading up to that moment is alot of fear and disgust for my life. I absolutely hate what this and all of the added crapola has done to me and my family. I really don't know who I am anymore.


• Here is what I do know, as recently discovered this past week. I am old. No, really, I am. I went from feeling like this energetic mother of 3 for ONLY 5 days, to weak, numb woman. I feel aged across every square inch of my body. Drained of life. I wouldn't even know where purchase the right sized battery for this limp being. Do the kids keep me going? OF COURSE they do. I have to keep going for them. But when people tell me I have to do for myself-ha, I don't even know where to begin. The only thing I have done for myself is indulge in my chocolate and junk food cravings and the weight shows. Why else do I feel old? Bc lately the people I have had the easiest time connecting with are those in their 50s, 60s and even older. Woman who have experience similar struggles in thier lifetime. Lifetime! I NOW can relate my past 6 mos to what other women learned in many years. Okay, you could say-well now you are ahead of the game. A peek into the future. But why in hell do the men in my life have to pay the price for some early life lesson?! Or is it simply my maturity that allows me to relate to these women? They too are suffering the cursed cancer lifestyle. I am grateful I have these women to go to. Here we are crying over loss. Loss of self. Loss of independence. Loss of control. All due to medical curses. Talking of the unfortunate reality that loss of anything precious to you (be it a person or a piece of yourself) changes you. You never see life the same way. A wicked lesson. The truth that you life changes in a split second with one phone call or words muttered off a doctor's lips. Nothing is ever the same. But for god sakes I am 32 years old. What did I do to deserve this? We share those fears but it still baffles me about the age range. I find it harder and harder to return to my old conversations. Of kiddos, and dinner plans, the latest restaurants, family outings. I don't do those things anymore. And before you say BUT YOU COULD, it just isnt that easy. Not just anyone will care for a 2 yr old with a needle and tube hanging from his chest. His list of precautions and dos and donts would scare off many people. It is not Grayson that is scary, it is his condition. And I understand that and respect it. But knowing that makes our lives too limited in so many ways.


• And then because of the connections I have made with these woman and their burdens, I ache for them too. I want to help them. I know I have enough on my plate but I choose to "pay it forward" whenever possible. And so this week I made a point to and it made me feel good inside. It meant squeezing out that last bit of energy I have before bedtime to put it together but I did it. I had to. I have cried too much this week for their pain as well.


• Wednesday night Triston and I tried Awanas. My friend Najette had suggested it to us and we decided to give it a try. She truly understands how we struggle to give Triston normalcy and a sense of control in this crazy life of ours. Picture a religious version of boy scouts. I felt he needed something of his own and the night time period worked well for our schedule. It happened to be Mom night so I was able to stick around. I was very impressed by the push for values, character ed and religion. A mini version of CCD. I was sold. T was placed in the 5-7 yr old group with friend Aidan. Now it did not click with me how much earlier this program had started until I saw how many songs the group knew. They turn no one away so it was no big deal for T to join this late in the school year. It ends in April. T tried his best to imitate the motions. I could tell he was uncomfortable but he pushed on. I gave him a thumbs up. Then we played some team building games in the gym. Boy! Just that opportunity for him to run and be a boy lit up my heart. He was really having fun! He was given a book with religious verses and stories to recall for the following week. If he recalled the materials and shared the comprehension questions with his "teacher" he would earn points toward his vest and other trinkets. That made him feel pretty cool. But then the clatter hit. The group was instructed to get their gifts they made the week prior for their moms. I told T to stay back with me bc we did not know about "the club" when they made those projects. He tried to hold back the tears and could no longer. It hit him! All the things he caught onto missing out on up until this date became too much. He was able to dismiss them in the moments but not now. He wanted to see what they made and cried to me, "I want to make something for you, mom". Then it just poured out-"I don't know the songs. I don't know that boys name" and on and on. He sat in my lap and cried into my shoulder. He wanted to go home. I lost it. I that moment I didn't care that I didn't know anyone either. I just held my boy and cried with him. I told him I was sorry and that I just wanted him to have fun and try something new. I realized I was crying so hard I wasn't just crying for him ,but everything else that blew at me up until that day AND it was ONLY Wednesday! We agreed to go and see what the group had made. We walked across the hall. It was ornaments they painted. He wanted one to give me so bad. He kept repeating he just wanted to give me something. I told him he was. That he does everyday. With his hugs, smiles,etc. But it wasnt enough. He knew he had missed pieces to this new puzzle place and it hurt. I hurt him by bringing us there. I really had a hard time breathing at this point. I knew people were staring at us. I did not care. Here I was trying to give to him and it blew up in both our faces. We agreed to go home. As we walked through one room to get our coats he noticed lemonade and cupcakes. He asked for one. I told him of course he could. Then my sweet boy was sure to grab one for me. We ate them with dry tears, sitting in the group room. We pulled ourselves together and enjoyed our snack. After we made it back to the car I asked him if he had fun. He said a little. I asked if he wanted to go back. He told me he didnt think so. In that short drive home I convinced myself we were NOT going back. I wanted to protect him from those feelings again. I felt so miserable. But, as I talked with Charito about it later and shared the moments he did have fun and attempt to meet new kids I realized I needed to change my decision. As much as I don't want him to feel that way again, it was also important to us for him to see that it is OK not to know everything. That perfectionistic, answers come easy quality in him needed to be chiseled away at a bit. Charito and I knew that from our own experiences. That evening he and I discovered how often we had avoided events, places, people bc of those insecurities and we did not want that for T. Just bc we were afraid to fail and NOT be good at something did not mean we wanted the same outcomes for him. T needed to try it one more time. It was only fair, to both of us. Believe me, it wasn't easy for me to see that or ultimately agree to it even though it was blatantly obvious what needed to be done. I struggle with that. Great timing huh? On top of everything else, this is the age in which T is entering big boyhood and somehow we are teaching each other of insecurities and trial and errro. T and I ended that evening reading that verses and one of the stories. He loved it! I told him how proud I was of him trying a new place that night. We talked about how it made us sad, too. But I also told him we were going back next week. That everytime we try something again and again it does get easier. We shall see how it goes. Just another example of how emotionally painful motherhood is at times. You wanna protect all you can and other things get in your way.


• By Friday night Triston was throwing up and diarrhea. His pukey bug lasted the same as mine. How nice of me to pass that lovely gift onto him! He was well enough to attend the Monster Truck Jam with daddy and my bro n sis n Ayden today. I prayed he would at least be well enough to enjoy something!

I really was slammed with some type of yuck each day this week. The kind of yuck that pulls you like quick sand and you wonder when someone is coming to yank you out. Heavy. That is how I felt. A heavy weight making me weaker by the day.

But like I said, I find the happies in the days, too. Some days it is easier than others. Some days it is simply if I made it home safe and sound and without any Grayson injuries to fret about! Here were the happies I came across this week. Week 27 def had the doom and gloom but I will NOT forget these moments:

• I now call those happy, frozen moments in time (described above)- "fairies". It is those moments when you mentally freeze for a split second to remember it just the way it is before it disappears. Grayson and I had one Thursday night. He was cuddling in bed with me and he pointed over to my bedside lamp. He said, "Look, mommy! See them! See them everywhere!" I looked over my shoulder and I saw that he was referring to the dust particles seen in the light. I told him I saw it and asked him what it was. He replied, "Tinkerbell and fairies." It was such a magical, yet innocent response. His fairy moment created my fairy moment. Moments of magic I NEED to remember.


• Triston hasn't had much time to play in the snow, so I let him be free during the walk from the car to the house afterschool. Those are his daily moments to fashion that snow angel he's been eager to make. It has become part of our daily routine now. But on Tuesday, he was too adorable. He stays on the lawn while I unload his backpack and watch him from the porch. As I looked up he was stomping around in what seemed to be circles. Whatever. But then he exclaims ," I made you a heart, mommmy. Just for you!" , and there it was. He fancied a heart in the snow with his footprints. What a way to melt his mam's heart!


• Friday night G and I were cuddling again. We had just finished reading books with T. G started chatting away about the book and everything else on his mind. Then he got serious. He looked up at me and put his hand on my cheek. Then he said in the most adorable whisper, "Mommy, you a princess." I immediately hugged and kissed him! I asked him if I was a princess then what are you. He looks at me with a duh kinda look and says, "Sushi!". Well, of course! How could I forget! He then proceeded to remind me that Triston is my eggroll and Caden my rice. I thought that was the end of the conversation. But he added one more-daddy. He was really thinking about it. "And daddy, uh, uh...noodles!" I bust out laughing. Go where you want with that you perverted minds you, but I was just impressed it was still in the Asian realm of things. Hilarious. Now G tells T this little speech each day like he's tutoring him!


• And let's not forget Caden. His accomplishments for the week include getting a cold, eating like a pig, been holding his bottle for a few wks now and now SO CLOSE to sitting independently. He is lasting longer and longer as each day passes. His adoration for T continues but it is just as comical to watch G play big bro. He talks baby-ese to him and dictates to me what he needs. But I think it is funny that as involved as G is, he will NOT pick up anything Caden drops/throws on the floor. He won't touch it at all. He tells someone else to pick it up. And if Caden needs it back NOW, G demands you get it fast, "Hurry, hurry Caden need now!".

The boys continue to bring the good out in me. I dont know how else to see it. And as for work and the ridiculous report cards and paperwork, it is just a place I show up to in order to get paid.Insurance is crucial. I literally put in the barest amount of energy and nothing more. I only have so much to give daily. If you get more out of me it is bc I was feeling a bit perky. Kudos to you on that day! Take what you can get.

Pukey Monday

I will never forget this chemo Monday. I woke up not feeling out of sorts but pushed on. We got a late start to our day. Triston stayed home from school. He was feeling much better but I wanted to be sure he was fever free for 24 hours and he deserved his own lazy day without Grayson in his face.
He also got to spend time with Lula right before her surgery today. Oh, I guess I never wrote about that. I seriously can't remember the difference between what I think and blog and have executed in real life these days. We were told a couple of weeks ago she has lung cancer and today is the day the mass is being removed along with any other infected tissue. I can't begin to tell you how numb her news has made us feel here. I feel as though Charito was just "getting used to" our leukemia life and the idea we have sick guy and now this. I can closely imagine how he feels, only because of our Grayson. I dread the day I receive news one of my parents is not up to par.
But we move on. I would be lying if I told you we were fine. The stress has only multiplied. Fears as well. Anxieties higher than they have been for me. We now have the stressor of finding child care for a 6 mos old and a child with cancer. Not easy. She will most likely be recovering for the next 4-6 weeks. I KNOW how lucky we have been for several yrs now to have their grandmother care for them and come to our home. It has been even more appreciated and necessary since Grayson's diagnosis and my return to work. We are blessed in that respect. But not only are we scared for her, we are scared for what it means for our family of 5. Our kids are very close to her. For now Triston was told she has black spots in her lungs that need to be removed. I told him she will need surgery. He responded by letting me know "it must be bacteria". I told him it was kind of like that. I explained that with the surgery they have to cut her. We may not see her for several weeks. I could tell his wheels were spinning. He then said to me, "And after the surgery she will need chemotherapy." I told him we are not sure yet. I did not mention the word cancer to him. Just that her lungs were sick. He relates cancer to chemotherapy and medicines and Grayson (that is what his cancer world is) and if she does need chemo or radiation then we will tell him its a cancer like G's but in her lungs not her blood. One thing at a time for now.
We are just taking it one day at a time. Many days we do not have a babysitter, but luckily Charito's boss is allowing him to work a later shift in the day. On those days he would be home with Caden n Grayson and once I get home he will head to work. Should be interesting on our not-so-routine lives thus far. This lack of normalcy is taking its toll on us REALLY fast. I really don't care for anymore negative surprises in the near future.
And then there was yesterday. Yesterday was a doozie. As I said I wasn't feeling my best. G was surprisingly in a great mood seeing as he couldn't eat or drink in prep for another spinal injection and tap. He whined for food once we arrived to clinic but was easily distracted. I picked up some soup at the bakery thinking I just needed to get something in me to feel better. Curb that nausea. But after several hours of convincing myself I did not have to vomit I finally had to give in. I left in the middle of his spinal to run to the bathroom. I felt better afterward (don't we all?) but it was shortlived. We intended to head upstairs for a transfusion. Hemoglobin was 6.8. It held slightly above 8 all of January and finally sank. It was only going to drop after the chemo that was just put into him. He survived his spinal without me, thanks to a great team. We made it thru admissions and into our PEDS room just in time for me to throw up again. I was miserable. Then within 30 minutes G started vomiting. This went on for the next 2 hours before he literally fell asleep from exhaustion. He could not keep anything down, even though he has attempted to drink some milk and eat some crackers following the spinal.
By now it was 3 pm, he was asleep and had nothing in his belly since 8 pm the night before. We had a familiar nurse-Christy, who called down to Princess Jennie to doublecheck if G had had Zofran before his procedures. No, it was overlooked in thought that he would be okay without it. No wonder why he was vomiting. Everything but the administration of the AraC was a typical Monday, in which he can usually handle without Zofran. But the addition of AraC (he usually gets this at night through his IV and port with a dose of Zofran at home but bc I knew we would be home late after the blood transfusion I told clinic to take care of it then), lack of food n drink for over 12 hours, morphine n Versed did him in. No one's fault, just a snowball effect for him . It is just hard to watch. He was so miserable. I haven't seen him like that in mos. I should have read the signs (had I not been ill myself) -when he only took sips and little bites. Usually as soon as he is given the green light to eat he chows down. He did alot of licking his food or smelling it instead of eating. He was nauseaous and I missed it. But I am so glad we confirmed it was the lack of Zofran that led to his vomiting. We could say it was chemo-related and not whatever I was suffering from. That would have been a whole different mess.
He slept til 5 and was ready to eat and drink and he did plenty of that. Especially since we were able to slip some Zofran in him while he was sleeping. As long as he drank we would not have to stay longer for fluids. At this point we were not looking at getting out of there til after 8 pm. The transfusion took its usual 4 hours. He drank sprite, ate rice, blueberries and popcorn and watched plenty of Thomas. I was fine as long as I didn't move and stayed in bed with him, otherwise I wanted to vomit.
I got him to pee by 8 and we were outta there. And right before we were about to leave Nurse Shell came in. G and she exchanged hugs and giggles. It was a nice way to end a rough day. He was so tired but in a much better mood. I was simply exhausted. As the day went on the chills and body aches crept. I survived on no nap, sprite and saltines all day. I had no appetite. Each fast food sign we passed on the way home made me even sicker with thought. I just wanted to get home, administer the rest of G's meds, hug my other boys, shower and pass out.
I slept horribly last night. I kept having nightmares. Fears of one of my boys waking in vomit mode. So far all of them are ok. T is off to school. G is eating and drinking and playing trains (whats new?) and Caden is toughing through a cold right now. He woke pretty congested but in good spirits. I am yucky. Only way to explain it. A nap is in the works in an hour or so.

The escape!

We got dr. permission. We packed the bags (I am so out of practice!). We loaded everyone into the van and hit the bricks! Let's roll! To Toy Story we GO!

I was so relieved that NO fevers, rashes, other unexpected buzz kill kind of events occurred the night before. And even as we were driving to Allstate I felt as if I needed to pinch myself in order to truly believe we were out! Out as a family of 5!!

It was more than awesome!

We met Neal, Amy and Ayden in the lot. We weren't even there 15 minutes before I was suckered into $46 in cotton candy ( 3 bags with alien hats attached to them) and one bucket of popcorn! $46!!!!! But on a day like that you don't care about money. You just care about their smiles. And who am I to deprive my boys of the one special treat they devour-cotton candy! It is my weakness, too! Ayden and Triston were the first to empty their bags. Grayson had a bit but was loving the popcorn (guessing still sticking to salty taste buds from the steroids). He ate almost 1/4 of the bucket! I helped.

The two of them so mesmerized and yet so intent on piling off the pure sugar!!

Oh, little rice! You were such a good boy! I know you always are at home but you delighted me to the ends of the earth to KNOW that you can BE elsewhere, too. SO SORRY you don't get out much baby boy...but you had fun, too! So happy and alert and taking it all in. So this is what its like outside my home, huh?

Grayson' s face when he saw the ice arena was so memorable. And when the show began...forget it, it was priceless. Triston danced and sang his way through it. I have to admit-I was emotional. Just seeing them light up the way they did! A sad reminder of how little we do. But the happiness hit me in every inch of my body, seeing their faces, reactions and awe. The show was good, don't get me wrong. I really enjoyed it! The time we had as a family was what it was all about though. Being able to share it with Neal, Amy and Ayden made all the better. I think that really was what excited G the most. Seeing Auntie Mimi. He adores her to the moon and back!

And then add a trip to a restaurant and he was golden! I could tell that was most likely his favorite part. He misses it so much. We used to do it so often. He misses looking at his own menu, getting pop, participating in such an adult world. He was practically giddy over it all. It was another one of those priceless moments.

He played musical chairs with everyone. Had to be a part of all the action. Chowed down on calamari. He was a king!

Being out and about was a highlight. I hope for so many more. And now I dont remember what else I wanted in this post bc I started it a while ago. But the pics alone say it all, don't they?

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!