Finality and Hope

March 12th
I wept today. Sobbed. Just hours ago. Just hours ago I said goodbye to my Italian Mama, Teresa.

I have not been to many funerals. My earliest and first was my great grandmother's, Adeline, when I was 9. I still remember the pain I felt in that room as a young kid. I remember my chest hurting while I watched all the hurt around me. I still remember some of the words I recited from the poem my parents wrote for her. I was proud to be given that responsibility. But it still hurt. That feeling stuck w me and from that point forward I dreaded all wakes and funerals. I do not do well. And since then if an acquaintenance passed away I simply sent a card to share my condolescences. It was just something I couldn't handle. I did not attend another funeral until over 20 years later. I know most people cannot say that. I know how lucky I was.

Nothing prepared me for the pain I would feel at the funerals of my filipino cousins Jimmy and Jacob in 2007. Their sudden and tragic deaths by drowning were unspeakable. Their anniversary is approaching and my family's pain deepens as the countdown hits, each year they trigger their pain at the marking of Jacob's March bday. Those novenas and buriels were absolutely heartwrenching. I had NEVER seen so much ache in one room, one grassy space afront coffins. No parent should have to bury their child before their own death. No one!

Teresa's service brought back so many of those aches and pains. I have a had a connection with this lovely lady since I was 8. Maria was my first friend in the new neighborhood. Her parents the first to welcome me into their home. Feed me AMAZING Italian food and wine. Their home was always filled with such a sense of togetherness. So comforting. So caring. I could go on and on with the memories but I wont. All I know is seeing those 3 children, now adults, and her husband was not easy. And yet as much as I dreaded seeing their pain , all I wanted to do all week leading up to this day was hold them, hug them.

When I arrived at the church I realized they would be walking in as a family with her body. Oh my. As soon as I saw them I lost it. Every one of their faces was purely empty. They were drained of life themselves. Numb. Their pain was everywhere. So what if Teresa was not hurting anymore! Everyone in that room was! How is this okay? How is this the way life is? Birth and death? I question it all. Her family has every right to be angry. I filled with so many fears of my own. The anger. Fears. More unknowns. The day I myself will be following my own parents caskets. I just can't.

It felt like a bad dream really. For years that family has suffered with one cancer diagnosis after another, amongst more than one of them. The type of family you want to yell at God FOR. I have prayed enough is enough already many times. Leave them alone! But no answers.

And here they were weeks ago coaching Charito and I through their chapters of lung cancer. And now it was over. So quickly. So unfair. When did it come to this? No trips to the zoo with Matteo. No opportunity to make his first communion outfit. No a lot of things. And those thoughts not only hurt to think of, the reality of it, but also my fear. My fear this would be our path with my own motherinlaw. Is cancer always this cruel to adults? Grandmothers? Even with hope, is this what happens to the elders? I only know the child like cruelties of cancer. I live it everyday. And we have had hope since the beginning and we face those cruelties with such force no one would want to challenge Charito and I. It is a fight they could not win. Us Carpers will win this one.

More cancer is what it was. And you bet I wept for my boy in that church. I told myself over and over again IT WILL NOT BE HIM. I WILL NOT PICK OUT A TINY PRETTY BOX TO PLACE MY BOY IN. NO. And that is what I said to my favorite girls and their brother and their father as I hugged them before the procession. Bc of course, with cancer on their brains, Grayson is who they asked about. It was the hug I wanted to give all week. And as much as I feared facing them, their painful eyes once I held onto them, I did not want to let go. We held each other so tight. I didn't care who was in line behind me to pay their condolescences. It was my friend, her sister, brother and father who I wanted to be there for. It was so hard. Their loss of faith so evident. And I don't blame them one bit. I am going through similar doubts myself. Not so sure they will get theirs back. They are a family that toiled with it for 10+yrs. Of course they are going to hate...alot. I would be the same.

But as we stood by Teresa's side in the mausoleum and said our final goodbyes I continued to pray. Pray their hurt will subside even just the tiniest in the upcoming weeks. I worry. I worry as soon as all of the out of towners head out...the quiet, the aloneness, the solace. It will hurt even more. It will become even more real. And it will feel like drowning. The what now questions will continue to trail them each morning. And even though I am not going through what they are going through somehow I played all this, piece by piece in my mind. I may not have loss my mother but I have shared a bit of their fears in the past few months. And that is scary. Too scary to see all this cancer amongst such a small group of people. So wrong.

My last goodbye to Teresa...was for Grayson. I KNOW (even though I did not visit her or call her often as I should of, guilt I will have the rest of my life) she cared, asked and prayed for Grayson often. A great woman with her loving heart would have done nothing less. The sickness they shared. The comparisons she most likely contemplated between her adult body and his tiny body...the somewhat similar treatments, procedures and regime. We were allowed to place a rose upon her casket. As I approached the bouquet my flabbered mess of a mushy body, mind and heart motioned me to grab the closest one to me, but in the middle of my reach my hand froze. My eyes widened, past the blurry tears and puffy lids, I saw a single remaining orange rose. Orange for leukemia. Orange for Grayson. I grabbed it. I held it tight. I kissed it as I waited my turn. I felt my tears fall upon it. And then I placed it on her. For her. For Grayson. A promise to her to no longer worry for him. He will be just fine, Teresa.

As I gave my last hugs, my last glances I held onto Charito tight. We walked toward the cars. I told him "That will not be Grayson." He said "I know." I said it louder. I repeated myself several times past tears. I told him I just had to say it aloud. I had to. God has to hear me. Hear my warning. YOU will not take him. Do you hear me? You will not.

Ramblings and Updates

A buffet of news:

• Week 30 (last week Feb 28-March 6) was a great week for G. Read the previous post to find out all about it.


• This week, week 31, continues to be another fabulous week for him. Appetite and happy moods are still flowing. No crabass attitudes to the extreme thanks to steroids...yet.So far his appetite is accepting of any healthy items. It has not yet morphed into steroid fights for all things sodium rich!
  
• Even though it's been a great two weeks for all the kiddos I cannot say the same for us adults. Charito and I have experienced 3 deaths in the past 3 weeks of people we cared deeply about. It has been a rather trying month, this sorrowful March , it has. Enough is enough already. One was my uncle whose services are still not order while we await an autopsy. Two of the deaths were our friends' parents (Joel's father and Maria's mother). And not just any friends. Friends of that close circle we call family. You know the kind I speak of, the ones by your side through thick and thin. Those people that are so close to you through every step of your relationship, marriage, children and are affectionately called aunt or uncle by your own kids. The kind of people you cannot picture your life without. And when they are hurting you hurt right alongside them. It has been a painful month to say the least.


• One of the scariest parts of one of the passings was that it signified the end of my "Italian Mama's " battle with lung cancer. No one should have to suffer and she did. And to be honest, her path rings all too close to how Mamac was diagnosed. The stories practically mirror themselves. All her death has done is bring up so many beautiful memories of my childhood ( this family has been part of my life since I was 8 yrs old) and other fears I currently fight each night before I go to bed. Not only do I live with cancer each day but I dread it in Mamac's life as well. It scares me to think that my Italian Mama's two yr battle may be what the future holds for another person I love. I am not trying to be negative, I dont think negative! But cancer will do what the hell it wants to do...again the loss of control no matter how hard medical staff plan their attacks. Yes, I believe an individual's heart, strength and umph carve the way but ultimately we are not control. Are we? I just cannot express my fears right now.


• So. to the best of our abilities we are trying to help out our dear friends. We are helping Joel out with his taxes this weekend (and I get to feed him like I used to, and watch my kids have a blast w Unca Doe). I was able to watch Maria's newborn, Matteo, for a bit (his grandma passed on his one month bday)...okay crying now....I also offered to contact her mother's school and inform them of the passing and service info. I had no problem doing whatever I could. And it so happened I was headed into her work to pass along info of Mamac's diagnosis. You see, both Mamac and my Italian Mama worked at the same school, the same grammar school I attended. I stopped by there yesterday and hit them with a double whammy of sad news. I ran into my former teachers and hugged and cried along with them. It was all too much. And tomorrow's sevice will be just as achey.


• Then to add to all-my father-in-law has been in the hospital for close to two weeks now. I will only share that he is having complications and that has us greatly concerned.


• I know, I know it sounds so black cloudish but it is simply what has been going on. No one could write this crap, it is so twisted!


• I hated every moment of attending work these past two weeks. When bad news hits and affects so many people in one sitting all I want to do is hug my kids so much more, so much tighter and not waste one minute doing anything else. As my mother said-our crew and I are just way too young to be dealing with so much yuck in the past couple of yrs. It is unheard of. But, work equals insurance...so I go. And I hate. And I put up with crap. And I worry. And I stress. And I try. And I put on a fake face. And I try and fix kids. And I try to soak up the smiles and that AHA moment some kids get every once in a while. Those moments make SOME of it worthwhile....but the paperwork and spec ed documentation can just kiss my flat butt. And I listen to people tell me I am a great teacher but I know deep down I am not at my best. That really bothers me. And then there are days I just don't care and I am a body taking up space, air and a swipe on the timeclock bc I am that much of a zombie in autopilot mode and nothing more. I only have so much in me sometimes. And it is not like my day ends there in that parking lot. I go home to my beautiful boys to play mommy, nurse, dictator (oh wait, that's Grayson's job...but sometimes he shares the crown) and wife. I don't ever regret those roles, I just wish the monotonous bubbled life routine could get shaken up a bit sometimes. But I know one day G will be allowed to step out of this rut and every one of us Carpers will unfold our wings and emerge beautiful butterflies, for a new kind of life. A slightly less stressful one?


• Bryley has been a pain in the butt in past weeks. She will be eight yrs old on July 3rd and for the first time in her 7+ yrs w us she is eating from the boys' table. Right off it when I turn my back! The only thing we can think of is that these are attention-getting behaviors. She is right under my feet most of the time, craving cuddle time and probably feeling neglected by Charito and I. She is still her wonderful, playful and gentle self with the boys but WOW food stealing is not allowed! She has been sent to her bed many times this week, a bed we have had sitting in the basement unoccupied for yrs and I HAD to bring it out-that is how MAD I was at her! RRRRRR!


• Triston has a cute routine going. One morning he said to me, " At school I will decide what my dessert will be tonight...whip cream or a computer game." Ummm, okay?! So that evening he came home to declare that he decided that evening would be whip cream and a computer game the following evening. And since then he has alternated those choices because " I am making a pattern, MOM!" , and when I forget about this ABA pattern of his and ask him what he wants for dessert he tells me to remember the pattern! He is a funny kid!


• We have a compassionate boy. On Tuesday T arrived home with some homework. In preparation for Lent/Ash Wednesday mass at school he was to come up w a Lenten promise and a monetary donation of his choice. I further explained (to the best of my religious ability) how Lent can be about choosing to be a better person and how to pursue that instead of giving up something. He thought about it for a minute. Then he told me he wanted to play nicely with his friends at school and not hurt anyone on the inside or outside. Okay-good answer. Homework done. So I thought. As I was about to get up from the table he still looked like he was pondering something. I asked him what he was thinking about. He then asked me, "Is Auntie Maria sad? Just like you are?" You see, 20 minutes prior to us settling down to knock out homework I had received the call of my Italian Mama's passing. I lost it on the phone, hungup and sobbed in the kitchen. T and G both heard me and came into the kitchen. Grayson immediately told me to "stop twying, it's otay. No more twying, mommy. No more", while Triston asked me what was wrong. I simply told him Auntie Maria's mommy died. How? She was very sick. I couldn't bear to mutter the words lung cancer to him bc right he associates that diagnosis solely to Lula. I could NOT paint any dreaded pictures in his head. Triston hugged me and told me it was going to be okay and that he loved me so much. So...when it came time to homework that was all obviously on his mind bc the next sentence out of his mouth was one of those mommy frozen moments that you treasure. He said, "I want to clean Auntie Maria's house. That's how WE CAN HELP her!" He clearly remembered the time when before Grayson's first return home from the hospital in August our friends gathered to clean our home for us. And even more recent (on Monday in fact) a friend of mine hired her cleaning lady to come over and take care of my floors, bathrooms and dusting all while G and I were at chemo. IT WAS WONDERFUL TO COME HOME TO THAT. TEARS STREAMED FROM MY FACE AS SOON AS I ENTERED THE DOOR, THAT SMELL OF NITTY GRITTY CLEAN, HANDS N KNEES ON THE FLOOR KINDA SCRUBBING WAS AMAZING! The kinda of cleaning we just cant get to on a regular basis! We keep the house maintained ENOUGH for G but struggle to get throught the days sometimes. So to Triston he wanted to help in Maria's time of need. He was understanding how people have to come to us in need and it floored me. That mommy moment reminded me-actually gave me a reality check-that in our chaos Charito and I are still able to do our job even when we think we are failing. We are raising a compassionate, kind and loving boy. Oh how I love him! So in the near future, when things calm down for Maria I intend to let T live out his promise. Somehow she and I will make arrangements for him to fold her clothes or dust or something bc her REALLY wants to help. That is the promise "help people clean thier house when they are really sad" that we wrote on his Lenten slip to turn in at mass on Wednesday. And he followed that promise by grabbing a handful of money out of his piggy bank to donate to church for those in need. He just kept coming down the stairs handful after handful-totally $4.30 in coins. I love you big boy!


• Triston is going thru some growth spurt. He is eating like crazy!


• I love that every once in a while I catch him reading his Valentine love notes, the ones I wrote for them each day in Feb leading to Vday. He kept them all, even G's, and stashed them in his empty candy canister shaped like a train. They sit on his shelf in his room. I think he is gonna be an emotional item stasher like me!


• Triston also received a package from SuperSibs this week. It is a trophy that is engraved-LOVE, STRENGTH, COURAGE. He is sooooooo proud of it. He really wants to show his teacher but I think we will take a pic and let him share that. What an amazing organization to devote such time and energy into the siblings of children with cancer. I know it makes him feel very special! They are even hosting a Quiet Heroes event in May that I am considering attending. It is for the quiet heroes of children with cancer-the mommies. I think I am ready to branch out and network with other moms fighting just like we do. We will see. Aerum has mentioned starting a Lutheran General Hospital table and I would def feel better if someone I knew was going, too.


• This morning I yelled/reminded T to leave his penis alone. A few minutes later G gnabs my attention to tell me, "I leave my penis alone!" Thank you, G. Thank you for leaving your penis alone!


• Grayson really never stops talking. Believe me-I am thrilled he is a talker and I have no concerns in that department but my gosh sometimes I want some quiet. And poor T. As soon as he opens his mouth to tell me anything G NEEDS the attention (all the time) and immediately interrupts. And G has even caught on that he needs to be LOUD about it in order to be heard over T. So instead I get a battle of the bands type of conversation instead of a calm one. So, I am often yelling at G to "STOP IT AND BE QUIET!" when what I really want to yell is SHUT UP but we dont say that in our home so there you have it. Well, now whenever G is annoyed that T is not listening to him or giving him all his attention no matter what the situation he just yells at to "stop it, be quiet". They could be disagreeing about a train, crackers or other brother stuff and the statement doesnt even make sense and yet he still does it. He has completely over-generalized the statement into any frustrating situation and yells at it. It is quite comical.


• Charito just brought me non-pareils from his mom-more emotional feeding therapy!


• Today is G's last dose of Prednisone (steroid) for a few weeks. His appetite has proven itself and the cheeks are starting to chunk up again. Love it.


• Even though we have had one too many deaths in recent weeks we also had some exciting births. Triston loves visiting Matteo (he calls him tomatoe) and is now excited to visit Auntie Katie's baby boy Samuel. We hope to see him soon. And of course we are still awaiting the arrival of baby Jack or Charlie. Neal and Amy are very anxious at this point!


• We are not scheduled for clinic this Monday. So unless Maria needs me or G has a sudden dip I will be going to work. I really just want spring break to be here already!
• Princess Jennie is officially on maternity leave. I will miss her greatly next Monday but am def sending her happy baby wishes for a safe, healthy delivery!
• That is all I have for now...

My fighter, doesn't disappoint!

This past week I often recalled Nurse Jennie's words...

"you will get pieces of G back!"

It was such an amazing week. Yeah, I know he was not on any chemo drugs (other than asthma, Bactrim and Nystatin) but we have had those kind of weeks before. But never w this much vibrant energy and glee. I just know Grandma's presence had a lot to do with it. But Charito and I found ourselves commenting on the same evening, a reflection of those words above. Were his behaviors this week a snapshot of what Grayson could have been like all these months had he not had to endure "the chapters of his new life"? Is this what things would have been like?

I know we will never know the truth. I believe the characteristics he possesses would have been there either way-stubborn, persistent infants don't just fluff that trait away. It is who they are and they take that with them. We knew that was our G 7+ mos ago. And I just know it is that trait, and so many more, that keep him plugging away at it all. So, I guess I am not questioning who my boy is, but maybe what life would have been like without cancer. Without a doubt it would have held less heartache, drama, fear and gut-wrenching pain. But that is not to say some of that may not have been sprinkled in? I mean, look at all the other sad events that fell at our feet that past few weeks/mos. All things that are out of my control. And being a mom always brings some of that into our lives doesn't it? To me it IS THE MOST emotionally-involved job out there. Wouldn't you agree?

But know that I will always bear in mind that with all the pain came gratitude, a reality check to toss the crap out of my life, tighter friendships, new friendships, new and beautiful people influencing and guiding us, and more compassion and hearts of gold we could have ever imagined.

Blessings is what they are.

And through it all our little Grayson pushed us forward, each and every morning. He needs us as much as we need him. That will forever be the case and I am perfectly happy with that contract. I made that promise to him the first time I laid eyes on him. A promise that will never pass. Here's to you, our lil fighter! Mommy and Daddy love you beyond words.

Feb 28th-March 6th

The last week of Delayed Intensification!!!!
We deservingly had this week off from clinic! And in true G style-he showed us there was NO NEED for visits with his energy levels!
My mom arrived at our home on Sunday and stayed the whole week to watch the boys. It was so stree-free! I loved it! Having that consistency all week was a treasure. The week still held its usual hecticness (wakes, funerals, Caden dr aptpmt, Awana, errands, attempts to clean, visits back and forth to the house and hospital to visit Charito's parents, oh and I finally made it to my drs office for a urinalysis that was supposed to take place back in January!) but at least it felt turned down a notch.
I cannot tell you how wonderful it was to have her here. We miss her so! G had a blast being a king. I embraced her opportunity to get to know the boys inside and out. The daily ups and downs of their lives. I felt like I could finally share what we go thru each day in person. God, I miss her! Believe, there are all too many days I cannot believe I accomplish what I do as a mother without her around. And on those tough days-I remember she and my father are the ones who gave me that strength.
And you should know that G had a FABULOUS, FANTASMIC, INCREDIBLE week!!
Not only was he spoiled with "Mama" (Grandma) love and actions all week but he was spoiling us with his actions. He ate wonderfully- I am talking steroid-like quantity with mommy loving quality! Yes, there were many handfuls of spicy nacho doritos but he soaked up and even requested tons of veggies and meats-
broccoli, green beans, carrots, lasagna, chicken nuggets, Mcdouble cheeseburgers (he is finishing off three quarters of one!), chicken, lots of yogurt, cheese, and cheezit crackers (alphabet only, I couldn't persuade him/trick him to eat the Spongebob ones) and pizza.
I was thrilled! His mood was even better!! A one of a kind clown, running everywhere and doing everything. We filled the week with lots of music and dancing-one of T and G's favs. Caden even got into the groove, swaying side to side ( I have a great video of this!) and perfecting his "tick, tock dance". Grandma couldn't have asked for a better week with her boys.
Caden stole her heart again...he was charming her at every angle. Grandma discovered his first tooth on Monday and practiced his sitting with him. He has mastered it-the past two weeks he has increased in duration and wallah! He just beams with pride when he is sitting! I really think it is the gravitation toward being at the boys' level and a better view of their antics. Caden is their best audience! So, at 7 mos I have a sitter and a toofer!! Crawling is right around the corner for this kiddo-you should see him squirm his way around the play mat.
We even had more than one visit with Ayden, sleepover style. T had no school on Friday nor tomorrow. All this cousin time is definitely welcomed.
T and Caden are off to another sleepover tonight while I take G to chemo tomorrow. We have a busy day of port drugs and spinal planned. I hope this week goes as smoothly. We will def let you know.
Overall, it was a week of well spent family time-much needed and unforgettable. Miss you already, Mom!

A Chill one-Week 29

Update on Grayson's week:
All was good on Monday after we returned from clinic.

Tuesday-Friday he was really chill. He would eat a bit near breakfast time, drink plenty but barely get off the couch. He was very, very tired. He would take a 2-3 hour nap before I got home from work. By 4 pm he was active, hungry and in a good mood. That was his pattern all week. His appetite and full on energy level did not seem to kick in til after T and I got home from school/work. Almost as if he needed that buddy system to get him going. Attitude n mood hit the opposite end of the spectrum while I was home. And as for food-even if he didnt eat much for others in the first half of the day I CAN ALWAYS get him to eat. Bribery and "First ____, Then_____" statements make mountains in this household. I cannot tell you how many times he heard "No tv / no music/no trains until you eat!". He made babysitters nervous with his lack of activity and couchbound behavior. I wasn't so nervous, as long as he was drinking, eating, fever-free, and if a nap is what used up that inactivity time so be it. His body needed it. Besides, I had my active guy for many hours upon my return. Again, his body may have been fighting something off.

Today is the first day all week that he has been his usual "good" self. Active all day long with special visitors like Auntie Najette, Eileen n Aidan. They had a blast w nerf "rockets " ( I hate the gun word, but I know I cant avoid it forever!) and so much more. He has been active, happy, crabby, demanding, hungry and thirsty all day long! Sounds like the G I know! He is still up and running about. Great day!

Caden's cold is much much better but I still may take him into his aptmt on Monday night to get the aok. Triston had another great week at school. He has been so excited to give me lessons on tooth decay and proper brushing. I also received a lesson on coins and the presidents,\. He is ecstatic to start a dino unit next week! He also loved Awana again this week. It cracks me up when we read his Spark book bc Grayson has some of the verses memorized and he mumbles them off his tongue to feel like he is a big boy like T. It is too cute.

Other good news! My mom is in town today! She will be w us for the week to help out with babysitting for the week. So excited. Big relief!

We technically do not have to go into clinic on Monday unless he is a little off. We will see what tomro holds in terms of that decision.

With a tiring week came some sad news. A dear friend of ours suddenly lost his father the other night. I was informed of two additional people in my life being stricken w cancer. And other family members were admitted into the hospital for issues still to be determined. It has been anothher difficult week, testing my patience, faith and sanity. More on that later. Please continue to keep us in your thoughts as we sort out more mud in our lives. And thank you, always!

Cuddly Moments

These two are quite a pair! Grayson was all buddy buddy with Bryley last weekend. She was his blanket, pillow and easy chair all at different stages of his day. LOVE IT! She is soooo good with the boys. She soaks it all up! Ah, those precious kodak moments. I adore their relationship with her. G takes on his role a little too serious at times. He has no problems with his chores like fillin her bowls and giving her treats, but gets so upset when she doesn't immediately eat or drink. He yells at her to "eat it, drink it!" and runs to me crying and tattling on her. It's that immediate gratification in him, I swear! But either way, he loves her and she does he. Couldn't ask for a better sister/daughter in our family (yes, we are DONE!).

Mind jumping Monday

My mind has been everywhere and nowhere since yesterday. So much spinning through the brain in the past 24 hours. So much to share, vent about, scream about and praise for. But for now I will talk of a few things. Ramblings.
Sleep was little last night. Grayson sat at that fever cusp again. One armpit said 37.6 C and the other 38.4C. Thiry eight and above is a fever for him. Ummm, I will take the 37.6 please! I was so tired I couldn't even recall if he had been lying on his side to offer up the numeral conflict but whatever. It sat there for a couple hours and he woke with no fever, 37.1. I was nervous for what it may be at clinic when we arrived.
I was more nervous for T. He had no school today. I took all my happy boys with us to clinic today and they were very well-behaved. But I was anxious for the possibility G may have a fever and Triston's plans to attend Aidan's bday party would be cancelled. We intended on getting in and out of clinic and meeting a friend in front of our home for her to take him to the party. I tell you, this family we met through Tball in the Spring (before diagnosis) and then ended up being a student in his class have been life savers many a times. They are more than generous to bring T home from school on days I can't get to him bc of the fast relief I need to offer to the babysitter of the day. And not only has their assistance been amazing but I mostly treasure the friendships that have evolved since. T loves his buddy and thinks his Kindergarten sister is fun, too. The parents are a really cool pair and one day I would love to just hang with them. The mom and I hit it off so quickly. Great people to enter our lives. But as soon as his temp was taken and read 98.4 F I was relieved! It also meant we were most likely okay after the fact G threw a tantrum and bumped his head hours before that cusp fever appeared. We could not help but worry of a concussion or bleeding under the scalp like times past. He happened to be at the brink of tired right after dinner and in protesting fashion he threw his head back at the idea of a nebulizer treatment and slammed it against the wall behind our bed instead of the pillows I am sure he had thought would be there. I am telling you, most of his injuries result from his tantrums and protests! Then we just waited for Dr Kwon to hear my rundown of the weeks events in the world of G and we could go. I pulled up to the house just in time. T had a blast!

But I swear, as I listed off the cusp-like fevers G faced last Tuesday and again last night plus the cold Caden has and the emotional wear the past 7 days have had on us-it felt as if a whole month had passed since last Monday's visit. So much has either reached the surface of my brain or emotionally sunk me. Kinda don't know what direction to turn in but at least knowing so much of it is good gives me some steering control.
Grayson received a dose of Vincristine today and a blood count. Counts were great in comparison to last week. Great enough to prove his neutrophils really are trying to fight off some bug and doing a good job so far.
ANC spiked to 840, last week 250
Hgb holding tight at 9.9
Platelets 448
Those numbers make me happy!

I asked those questions. We now have a map of Maintenance. We begin it on March 7th and it will last for the next 2.5 years. The final stage! Maintenance is given in 12 week cycles. Here is the rundown that takes us through May for now. 84 days from March 7.
Every four weeks he will receive a spinal tap and injection of Methotrexate.
Every four weeks he will get a push of Vincristine.
He will take an oral dose of Mercaptopurine (MP) everyday
He will also now take oral doses of Methotrexate several Mondays in a row.
Every 4 weeks for 5 days straight he will take oral doses of Prednisone (steroid)
And will continue his Bactrim, Nystatin and asthma meds
It will also be very important to monitor and encourage his diet. This is the time for him to pack on those healthy pounds and gain some inches!

The dose and frequency of the above depends upon his height and weight. In the beginning we will go in every 2 weeks (most likely March) and then by April visit once a month. The need for blood transfusions, colds/viruses/bugs/asthma peaks may increase those visits as well. But that is the general protocol. ANC will drive alot of this. Low counts determine alot. But it is nice to know there is a new type of schedule we will learn to adjust to. I welcome this new schedule. A schedule that maps out the next two + years. Bittersweet feeling.

I did ask what can we expect from this phase. They shared that because he has done so well there shouldn't be any MAJOR bumps in the road, but to never rule them out. The way he has paved his journey thus far gives quite a glimmer to how manageable Maintenance can be. Those are hopeful words. Princess Jennie has seen many kids grow their hair back in this phase. Boost up their energy a great deal (but if you ask me that hasn'tbeen too much of an issue for G!). But as always, when he gets sick and his counts are low he will def feel it. It will hit him. Overall, it just sounded promising. The worst case scenario fears have to remain to be realistic (see my previous post to know how those will never go away in both my mind and medically) but it is still a positive vibe I got from her. These words of hers made me cry and resulted in my mumblings of thank yous and love yous to everyone in the room-"you will get pieces of your G back". Go ahead and pause, you can cry bc I sure did. The moment was truly memorable. We are leaving behind so many stages of raw shredding n tearing into our lives and moving onto getting my G back, to the best of his abilities. Go ahead and cry, reader! Hugs were all around. I let them know I could not have done any of this without them. Knowing each Monday I would see my team of strength and dependency past those spaceship doors was more than I could have asked for on this journey. Today was one of those days! And his behavior matched all that discussed in that room today. He was cooperative, happy and absolutely lit up when he saw Aerum's face. It was priceless. This is how I remember Presidents Day 2011.