Here we are

The past few days I have been happy to hear that two wonderful women became mommas. That their hospital stay is for over the moon, joyous, what kind of life was I living before I held this beautiful baby kinda moments. I love that. I couldn't help but recall my mommy moments with each of my beautiful baby boys and even smell their scent all around me all over again.

But I also couldn't help but realize how very different their hospital stay is from mine at this moment. I, too am with my baby but for very different, unfair, never wish on any mama kinda reasons. Leukemia has me right back here. Our nine month streak is over. It was a wonderful, unbelievable lucky, kick-ass nine months-BELIEVE ME! There was NOT an evening that passed that I did not thank God for keeping us all safe under one roof, together the way it should be.

And yet here I type as his tiny body is swallowed up by that big bed, hooked up to IV fluids, cefapime and a pulse-ox. It has been over 3 days and we are still stuck here. A fever for Grayson is 38 celsius. Early Sundy morning at 3 am (Feb. 26th) we were head on with a 38.4 that easily crept to a 39.2, 39.4, 39.8, and even a 40. By 10:30 pm we were in the ER for a direct admission. I will never forget the pitch in Dr Kwon's voice when he questioned 39 as if to confirm what he was overhearing on the phone. I knew the concern right away.

But G sure didn't. Other than the fever and a varied cough he had no other extreme symptoms the entire day. Which is why we played the fever game with Tylenol before calling it in. He ate well and played hard as if trying his best to fight it off. But we knew something was brewing. Everyone of us has been fighting a cold, taking turns for weeks bc of this damn mild winter. And just on Friday I picked T up from school early bc he clearly was not himself. He sure wasn't. It only took hours before he was feverish and vomiting with a 24 hour stomach bug. When it came time to tell G we needed to go see the birds he looked up at daddy and said 'Sorry, dad but I have to go now. I am gonna go see Dr Kwon,' and he headed off to get his shoes like it was no big deal. I guess routines in my little guy don't change even if he has had nine mos off of "emergency duty". C and I teared up for so many reasons. The here we go again feelings, gonna miss you dearly feelings, endless worry of what the hell we were dealing with especially w no other dramatic symptoms, and the hustle and bustle of logistics that needed to be figured out w babysitting and afterschool shifts and T's art class, etc. I made sure to wake T and tell him where I was headed. His immediate response, 'I know...The U_____ will bring me home from school. Don't worry mom.' I was not sure if I should be proud of him for knowing already or sad that this what he has had to become familiar to. Either way I whispered that he could sleep with daddy and gave him a huge squeeze and hug. I didn't attempt the same with C with fear that I would be leaving daddy to try and get him back to sleep.

C loaded the car and off we went. No joke. G was excited. Talking my ear off about who we might see and what they will need to do once we get there. And his impatience was evident while we waited for transport to take us up. ' Uhhh, What taking me so long?!', he repeated (what taking the person so long). The admissions lady couldn't help but laugh.

Ironically, I wasn't in panic mode on the drive there either. I was calm. We had done this before and we knew what to expect. That feeling was comforting. Let's just get there and figure this sucker out. And boy were things moving fast. Like record time. Within 45 min of our arrival on the floor he was accessed (needle into port), cultures and CBC drawn, PCR (huge swab up his nose for labs-respiratory panel) and cefapime (generic antibiotic thru port) was underway. He also had an chest xray done as soon as things calmed down.

Since then he has received cefapime every 8 hours. We had to wait more than the usual 24 hours for the PCR to come back negative and more than 48 hours (bc there are so many resp patients this season that they are backed up) for the cultures only to find out it read negative for 3 days in a row. In cases like these you almost want a positive PCR bc then you can easily treat the exact type of respiratory infection (it tells you out of hundreds which one it is) and then get that exact needed antibiotic going. But no such luck. So since it is not one of the more popular (more serious) especially since his chest x ray showed an infiltration in the base of his left lung, we have to treat it as a generic resp virus and continue the generic antibiotic. It clearly was already doing its job so no need to snoop around any further for exacts. It is now Wednesday night and Infectious Diseases has not had to get involved. Everyone is pleased he has been fever free since Tuesday morning. He looks and acts fabulous. Eating a great amount of food with no waste issues to speak of other than the initial dehydration when we arrived Sunday night.

But we are not out of the woods yet. He may look "perfect" on the outside but his insides tell a different story. I mean it is cancer after all-why the hell would it be easy! His Hgb stayed steady Sun and Mon but dropped to 7.8 on Tuesday. Today it is 7.4. They like 8 and over. A transfusion would typically be taking place but his complexion, lip coloring, SAT and energy levels are not of concern right now so we are holding off. His WBC is slowly climbing back up and platelets are holding strong. His ANC is a whole nother enemy right now.
We knew he was in jeopardy of catching something with an ANC of only 400 last Monday. But now it sits at a .1 That's right! Not even a whole numeral! We like it bare minimum at a 750 but even that still leaves him open to infection. Me? I love it over 1, 500-2,000-safe enough to take the kid to Target for goodness sakes. It even dropped from a .4 from yesterday.

So we have the virus under control but now we wait for the counts to go up. Once again the cancer is gonna do whatever the hell it wants to do. This was most likely a cold that mutated into a resp virus bc of his low ANC that could no longer fight off the infection. If you have no infection fighters in your corner you are going to get sick! He has been wiped clean of them unfortunately.

But you know me...as much as I like to vent I still point out the brighter side to things. This could have been ALOT worst. I cannot tell you the stories I not only read from random cancer mom blogs and sites but from those moms I am contact with fighting alongside us and there are horrendous things happening to kiddos. Not only are they fighting cancer but some of these "simple" viruses that non-immune compromised kids can shake off with TLC and chicken soup literally strip these kids of functioning organs, brain cells and so much more that I hate to mention. We are very lucky this was  a tiny virus and not pneumonia or something more serious. We got here when we needed to and got done what needed to get done. We are past the drama of it all and now just waiting for his blood and body to get back to the way we like it. And it NEEDS to be that way before we step out of here or else we could be walking right into a serious infection right around the corner.

And that is the part that hurts a lot. All these things we are educated on, know to do, make happen. told to do,  and watch out for 24-7 bc of cancer. The challenges and kiddie illnesses that should be simple hurdles for him are turned into mountains. He may take it all with mostly smiles but it hurts his loved ones tremendously. Here I am away from my hubby, my Triston and only get pieces of his days through mini conversations, and Caden and his blabber mouth of words and curiosities. Does he even know I am gone? I am not the one putting love notes into T's lunch bag. Is he getting any? Does that bother him? Luckily homework is a breeze for him and he needs no assistance for that but still, I like to watch him whip it out in minutes. I miss that.
But, on my end I am getting tons of time alone with my fighter. Total uninterrupted by other bros time. He has me all to himself and he loves every bit of it. I won't lie, I do too. He is such a clown. He has me peeing my pants in laughter. From the moment we stepped in the room he has told everyone what to do and how to do it his style. So totally aware and not missing a beat. And the things he is more aware of this time around in nine months time. He is a 3 yr old now ya know. The amount of questions and whys are so much more of higher thinking order. And then before someone can come up with their kiddie like answer he is making his own predictions. It blows me away. He knows this world so well it both scares me and makes me beam with pride. He is the easiest patient. I adore every inch of him. I know deep down  I needed this time to put some things into perspective. We as a family have been in a horrible rut this winter. We try our best when his counts are good but picture cabin fever to the EXTREME-that is us! Me especially dealing with my own mommy demons. The yank from the mundane was a rude awakening on so many levels. But in a crazy way it was needed I guess. I was meant to be in a bookstore the day before admission buying up the Hunger Games trilogy. I actually read a book that was not cancer related in the past few days. Onto Catching Fire (thank you Jenn ;) for the recomm). I was meant to have a bit of Sat to myself for hair and shopping and self-reflection before the storm. I needed the break from work to collect my thoughts and worry about what was really important instead of deadlines and workloads. I deserved time to take a nap all cuddly next to my big baby. To be reminded of the amazing people that continue to care and do and for us inside and outside of this hospital. Yes, I am blessed to see the luck amidst the inconvenience of this stay. I truly am.

This fact still remains- This life of ours is a lonely one. It is unique and only understood by us it seems. Something you can't ever completely describe to others bc so much pain, emotion and expectation is involved. I mean no offense to those all around us that do and do and do for us without question or request. They are always cherished.  And then are those that want to help and are waiting nearby for the green light. Thank you. And then there are those that are silent, nowhere to be found. I can only imagine for two reasons-they do not know how to or they simple choose not to. Let's be honest, We all know someone that in the face of tragedy they skip out. They say the token "If you need anything let me know" but they struggle to pull through. I was once guilty of that and forever am scarred by it. I can understand both. I have been there and fully see that unless you are knee deep in it, experienced something similar or are  simply working hard at keeping your own life afloat it is what it is. I do not judge, really. And if you do not believe me then you do not know me and I do not need to save room in my life for you. If and when you are ready I will be waiting. Until then I do not have harsh feelings over it. This life of ours  has forced so much simplicity and clarity toward so many related aspects that there is so much that does not require much thought. Simple is better. I have enough drama to allow room for more. No thank you.  I have seen all sides of it and to each his own. It is all relative. I get it. It is simple. Life goes on. We all have to go on. That is why we are met with new mornings each dawn. We all do what we have to do for that moment/stage/time/chapter of our life. Do what you have to do and I will too.
But even through the need for family, your immediate family during a time like this,  there is a wedge that exists. When his counts are low we see no one. Not even our immediate family members. Weeks pass before I see my brothers, sis in law, niece and nephew. I haven't seen her walk in person yet. They haven't heard Caden's latest vocabulary rants or G's latest clown tricks or T's newest philosophy on life. And don't even get me started on how much I need my parents lately. We miss out on Charito's gatherings with his only bros n sis' aka his cousins. We both miss out on extended family parties. I cannot recall the last time we had lengthy conversations with anyone. There is still two handfuls of people that have never met Caden. Triston gets out more than us all. Lonely about sums it up.

But it is I who will always pray for the day when things will be easier for G (although he makes it look flawless don't he, geesh!)  and the rest of us. Less lonely. Is that even possible? I will always be happy for the good fortunes and news that my friends and family members share with me but I would be lying if I didnt share that I do get jealous. Although I am a pro now at counting my blessings little and big each and everyday there are things I wish could come easier for us. Some wishes that would perk things up for us along the way that will never occur. Or that I could feel that same innocent overflow of rejoice that they are gleaming in. They deserve it.. I love them and believe that whole heartedly, really I do. But I would like some of that to come my way now and then too. But please dont confuse this with my always evident awareness that things could be worst for us. A sad as it is true, there is always someone worst off than you. Their struggles are beyond comparison. I wish no one had to be at the drowning point but there it is. Each one of us thankful it isnt us I guess. When I have spoken to those nearing or entering their OT lives (off treatment) it is filled with a new set of fears and bittersweet events. Is the calm ever present? Or is it just a new set of waves to ride until you get the hang of THAT surfboard? The day to day we trudge through has been exhausting and only seems to be draining me even more as time passes. My mission does not change though. I have four boys that need me. I need them just as much. The train tracks we travel will lead to an unbelievable destination some day. I guess we just have a whole lot of dark tunnels to pass through along the way. And this will be behind us with even more to look forward to. The worries will always be there. That will NEVER turn off. Cancer does that to you (one of the many things they don't mention in the "Ta Da you have Cancer" brochures). Any little symptom or oddity that pops up with myself. C or T freaks me out into cancer mode. It just happens. And I am fast learning I am not the only cancer mom experiencing this. The ultimate shock was driven into your heart with one sentence and that fear doesnt subside. Once treatment is over things dont just go back to normal. Things will never be normal again. It will just be a another kind of new normal we will have to adjust to. How many does one family need?! Seriously. I already feel as though leukemia has stolen 15+ yrs off my life, not to mention the countless other cancer-diagnoses and deaths we have had to weather thru the past yr and a half. We will never be the same. And it is true, there is a part of that that IS a change for the better. I fully believe that. But pain is pain. That cannot be erased. But as I have said before. We have taken each day and run with it in the best direction possible and we will continue to do so. It is the only thing we know HOW to do at this point. We don't know what each day holds, but neither do you. That is the point isn't  it?

Latest (that I can recall these days!)

I think I forgot some stuff the last time I updated.
Like the good news ( I think?!):
I finally got the balls to ask if Grayson could attend school in the fall and Dr. Kwon looked at me like I was crazy and replied "of course!". All those months I worked myself up to that question and it was that simple of an answer. He and nurse Meghan explained that the treatment protocols are designed for the kids to go on with life as normal as possible. We had the green  light. I will save my ranting for this fear for another post bc there are tons of thoughts spooling around my head on this one. Stay tuned!

Almost all of February the 5 of us have been on and off with colds. We are in the clear for 7-10 days and then someone else in this house is fighting something off. I am grateful it has not been any serious viruses tho! The gastro one is going around again, bronchitis, strep and of course that lovely friend pneumonia is always at our doorstep waiting for an invite. NO thank you!

Feb 20 G had his LP (lumbar puncture) "spinals". All counts were looking good except his ANC at 400. His mood def did not match this numeral! The kid begged me to leave the house so he could get his "pokes" and ran down the hallways greeting Princess Jennie and Nurse Meghan with hugs. He was giddy and silly as usual. He had a gunky cough and sounded nasally since Sunday but other than that I had no concerns. Kwon asked me my opinion about whether to proceed w the day's procedures and I was ok with it. Had his mood indicated otherwise than I would have disagreed but you should have seen this clown of mine. Cracking us all up. And even when he overheard the question from Kwon's mouth and he left the room he began to whine to me that he wanted to get his poke. He himself wanted to get on with the day's plan. So we went for it. Typically a spinal does not take place with an ANC below 700 but like I said, this kiddo proved differently.

He handled it like a champ as always. We literally skipped down the hallway to the car on our way out. G was so eager to get home to T. Due to the low ANC we were scheduled to return next Monday for a count check with hopes that it would go up. He was taken off his mercaptopurine until then. He was only to receive his Bactrim and 5 days of steroids.

Then things changed. You have seen the pics. After every spinal he gets Mcds, sings songs on the way home, eats and plays up a storm until bedtime. All this as if no earlier in the day a professional wasn't stabbing needles into his back! But the last 10 minutes of this ride home were different. His eye lids were heavy. I assumed he was given a smidge too much of Versed. Then he dismissed his Mcds and insisted on napping. Before I knew it, in less than 2 hours he had a fever. Then he vomited. Neither of these things had occurred after a spinal in over 15 months. I immediately thought this was a virus that hit its head. That chemo or not this was bound to happen today. I went into mommy panic mode and began packing Triston's lunches for the week. laying out Caden's clothes and doing laundry and prepping the hospital bag I hadn't touched since June 2011 (damn chicken pox, Caden!). I was convinced this was the virus that we had been dreading all of winter. It was finally time to see the hallways of PEDS again. I did not give him tylenol bc he had never fevered so soon after chemo before that I did not want to compromise anything. I gave him time to rest. I even recorded his breathing on video as he slept. It was so fast and short breathed. It was SO all of a sudden. A Jekyll and Hyde from the boy that just skipped the halls! The fever went down by the time he woke from his 3 hour nap. I called clinic to give them a heads up to his condition. Dr Dell said to monitor him through the night and if his fever reached over 101 then go in. He did his whiney sick moan and groan all night. He barely ate. I was able to get him some gatorade and bites of pb n j (side note-G has never liked pb n j sandwiches and all of sudden he wanted to eat it on a bagel! Whatever he wanted to eat was fine with me. He took some bites and ate some goldfish and passed out. Since then he has had two pb n js. Thank you steroids for the new found food item we can add to your goofy list of side effect cravings!).

When he woke Tuesday morning he was still a little off but had been fever free since dinner time MOnday. By lunchtime he was his old self. I mean his real old self-the breakdancing fool in the living room to Selena Gomez's Love You Like a Love Song Baby old self! It was a complete turn around. After a few emails with Nurse Princess Jennie she assured me that it is not uncommon for a kiddo to handle spinals great for a period of time and then have some off ones. The fact that his ANC of 400 indicates he is currently trying to fight something off plus the whammy of chemo that day kinda knocked him on his ass as a result.

I won't lie, he had me nervous. It was that unknown of hospital no or go? Leaving the rest of my kiddos and hubby? Things we hadn't had to do in 8 mos. We are loving that record! And thanks to G and his eager spirit we were able to avoid it again. We are closely monitoring his asthma, this gunky cough and anything else that may seem goofy before Monday. We are living the bubble life til then. Avoiding it all. Kinda hard for him this time around tho. His counts were so good the past two mos that we took a  few outings and now he is wanting more. He understands what we mean when we say his "numbers are low". SO much that when I explained it to him last night after he asked if he could go with to pick up Ts glasses he tried to reason w me that it was 'not like the car show but little like Jewel'! Smarty pants! He is getting the whole crowd thing!

Today, Wednesday, he is still doing great. The throw mama for loop of Monday seems like it was a week ago! He just came up to me to say that daddy gave him another pb n j sandwich, 'like on Sunday, Monday and Tuesday-three days all together' (he's a day off, he really means M, T and W) but no complaints from me. He needs the protein!

I will keep you posted on Monday's check in. After that we are not scheduled again til March 19th. We are now in 5A of Maintenance and from this point on he will receive spinals every 3 mos. That means something like 15 more spinals to go and we are done with treatment. So far yet so close, huh? November 2013 here we come!