Even if they are ALL ticking me off this morning I still luv 'em.Our own lil superhero!
Dick Grayson ain't got nothin' on the G-man. Our lil fighter since in utero-a young, fiesty fireball...never giving up! Just watch me!
Friday, December 31, 2010
All I Need for 2011
is right here...
Even if they are ALL ticking me off this morning I still luv 'em.
Even if they are ALL ticking me off this morning I still luv 'em.
Wednesday, December 29, 2010
I will be keeping this in mind for months to come
Even though I falter too often in God's name it does give me a push in the right direction...
Encouragement for 2011
God is for you
God loves you
God will not fail you
God will be with you
God will provide for you
God will bless you
God will give you rest
God will give you strength
God will answer you
God will uphold you
God will keep you
Taken from DaySpring
Friday, December 24, 2010
Thank you...
ALL OF YOU!
For all that you do and have done. We would not have survived the turmoil of the past 5 mos without you. The way friends, family and strangers continue to rise at our side overwhelms us. I know I use that word OVERWHELM often but truly is no other way to describe the rush of loving arms we have encountered more than ever in recent months.
I woke this morning forgetting it was even Christmas Eve today. Forgetting I promised Triston we would be shopping buddies today. While rescuing Caden from his pee pee soaked pjs, a hurried bath and yummy bottle at 7 am I felt nothing but quiet. Heard nothing but quiet. The house was frozen. Just he and I sitting in the living room taking the morning in. I felt as if I barely any sleep at all. When will I feel refreshed again? The kind of awake that comforts you for days with a sense of new beginning?
Frozen is what last evening was like. Grayson and I arrived home by 1 pm. By 3 pm I decided to surprise my parents and show up in Roselle. I had that giddy, excited, little girl feeling in my belly. But anytime I get a tad of that feeling (like when I get to see my hubby after days at the hospital or when he returns home from work) it is curbed with the what ifs of Grayson. I glance him over. Recall his last meal and drink. Temperature checks. Is it ok to take him out? Only a few hours? Everyone all well at the house? When was the last time he had his meds? Pack the rest of meds. The list goes on. On top of packing what Triston and Caden would need for a few hour outing. Exhausting just to think about or even attempt but that excitement of seeing my parents overrode that ugh feeling. I gathered what I needed and off we were.
Arrived there around 4:30pm. I cannot put into words the feeling of those hugs from my parents. The kinda hugs you suck in every breath, smell and warmth of. You hold onto it to remember it, that moment, bc you waited months to have it back. And then just like that...we fall into a routine that was never more necessary for me. EVER. The kids run, hug, jump, and play til they collapse. Adults gossip, eat and just chill. Everyone observes and comments how fast they are growing. And of course the infamous thought ---as he keeps up with the big boys---Cancer, huh? Where? You wouldnt even know it. That is HOW AMAZING my boy is. And as I fought back tears, enjoyed the laughs, the pizza the company--- I breathed it in. I purposely touched items and paused in areas in that home reminded of me of where I'd been. I smelled the smells that send tiny smiles through my bloodstream. I munched on sweets the way mom and I munch after dinner. I watched and memorized all the facial expressions I wanted to, needed to, in those moments. I missed them beyond words.
Don't get me wrong...the "CAUTION sign" on Grayson's existence never disappears. I did all of the above WHILE watching him like a hawk. I sure as hell did not want to return to that hospital bc of some stupid injury. Or bloody noses bc of low platelets or a surprise bruise or ...the list goes on. That cautious feeling is heightened when we are around others. Not just adults but other kids. Kids will be kids and G will be a 2 year old...and with that comes rambunctious behaviors and injuries. It's the typical parent worries amplified. And unfortunately, it puts a damper on socialization. But we do what we have to get thru the hard before we get to experience the easy-er. I dont know when it will be completely easy but I imagine it will get easier. And to think prior to July 31, it WAS.
And I will not lie...just because I can feel the happiness and gratitude in these next 24 hours especially, it doesnt mean I dont have episodes of anger and sadness. How could I not? And the question plays over and over in my head-How did Charito and I get here? This place in our lives? I don't understand. That question carries so much grief, anger,despair, pain and uncertainty for us. It creeps up at the worst times. It is evil. That question. It haunts me. So now you know...when I am not thinking positive I am plagued by that question alone. And ultimately followed by that question is the recall of diagnosis day. It is inevitable each and every time. Evil.
But with evil comes good. Like the good, no the GREAT, I have seen in people in recent months.
We are grateful. Grateful for those events we label moments. To have my parents to come home to. A wonderful support system everywhere I turn. Health-ier people in our lives. Happiness to be shared all around. It is what the season is for. To remember it like Triston says, " Jesus was born for me, mom. And God made everything I see." Jesus IS the reason for the season. And I decided today to follow the lead of my big 5 yr old and the innocence behind his version of the tale. It is the simplest. And I need simple. No frills involved when it comes to God's involvement on this eve. Simple understanding and acceptance. Sometimes it is easy to get there and other times not but I AM CHOOSING to get there today. Not sure how long it will last (especially since these kiddos are off their rockers today and it is really, really difficult to maintain sanity without exploding in frustration) but I AM TRYING today. And will continue to remind myself when I can all other day to come. I hope you do, too. Merry blessings to all of you this eve. All my love!
For all that you do and have done. We would not have survived the turmoil of the past 5 mos without you. The way friends, family and strangers continue to rise at our side overwhelms us. I know I use that word OVERWHELM often but truly is no other way to describe the rush of loving arms we have encountered more than ever in recent months.
I woke this morning forgetting it was even Christmas Eve today. Forgetting I promised Triston we would be shopping buddies today. While rescuing Caden from his pee pee soaked pjs, a hurried bath and yummy bottle at 7 am I felt nothing but quiet. Heard nothing but quiet. The house was frozen. Just he and I sitting in the living room taking the morning in. I felt as if I barely any sleep at all. When will I feel refreshed again? The kind of awake that comforts you for days with a sense of new beginning?
Frozen is what last evening was like. Grayson and I arrived home by 1 pm. By 3 pm I decided to surprise my parents and show up in Roselle. I had that giddy, excited, little girl feeling in my belly. But anytime I get a tad of that feeling (like when I get to see my hubby after days at the hospital or when he returns home from work) it is curbed with the what ifs of Grayson. I glance him over. Recall his last meal and drink. Temperature checks. Is it ok to take him out? Only a few hours? Everyone all well at the house? When was the last time he had his meds? Pack the rest of meds. The list goes on. On top of packing what Triston and Caden would need for a few hour outing. Exhausting just to think about or even attempt but that excitement of seeing my parents overrode that ugh feeling. I gathered what I needed and off we were.
Arrived there around 4:30pm. I cannot put into words the feeling of those hugs from my parents. The kinda hugs you suck in every breath, smell and warmth of. You hold onto it to remember it, that moment, bc you waited months to have it back. And then just like that...we fall into a routine that was never more necessary for me. EVER. The kids run, hug, jump, and play til they collapse. Adults gossip, eat and just chill. Everyone observes and comments how fast they are growing. And of course the infamous thought ---as he keeps up with the big boys---Cancer, huh? Where? You wouldnt even know it. That is HOW AMAZING my boy is. And as I fought back tears, enjoyed the laughs, the pizza the company--- I breathed it in. I purposely touched items and paused in areas in that home reminded of me of where I'd been. I smelled the smells that send tiny smiles through my bloodstream. I munched on sweets the way mom and I munch after dinner. I watched and memorized all the facial expressions I wanted to, needed to, in those moments. I missed them beyond words.
Don't get me wrong...the "CAUTION sign" on Grayson's existence never disappears. I did all of the above WHILE watching him like a hawk. I sure as hell did not want to return to that hospital bc of some stupid injury. Or bloody noses bc of low platelets or a surprise bruise or ...the list goes on. That cautious feeling is heightened when we are around others. Not just adults but other kids. Kids will be kids and G will be a 2 year old...and with that comes rambunctious behaviors and injuries. It's the typical parent worries amplified. And unfortunately, it puts a damper on socialization. But we do what we have to get thru the hard before we get to experience the easy-er. I dont know when it will be completely easy but I imagine it will get easier. And to think prior to July 31, it WAS.
And I will not lie...just because I can feel the happiness and gratitude in these next 24 hours especially, it doesnt mean I dont have episodes of anger and sadness. How could I not? And the question plays over and over in my head-How did Charito and I get here? This place in our lives? I don't understand. That question carries so much grief, anger,despair, pain and uncertainty for us. It creeps up at the worst times. It is evil. That question. It haunts me. So now you know...when I am not thinking positive I am plagued by that question alone. And ultimately followed by that question is the recall of diagnosis day. It is inevitable each and every time. Evil.
But with evil comes good. Like the good, no the GREAT, I have seen in people in recent months.
We are grateful. Grateful for those events we label moments. To have my parents to come home to. A wonderful support system everywhere I turn. Health-ier people in our lives. Happiness to be shared all around. It is what the season is for. To remember it like Triston says, " Jesus was born for me, mom. And God made everything I see." Jesus IS the reason for the season. And I decided today to follow the lead of my big 5 yr old and the innocence behind his version of the tale. It is the simplest. And I need simple. No frills involved when it comes to God's involvement on this eve. Simple understanding and acceptance. Sometimes it is easy to get there and other times not but I AM CHOOSING to get there today. Not sure how long it will last (especially since these kiddos are off their rockers today and it is really, really difficult to maintain sanity without exploding in frustration) but I AM TRYING today. And will continue to remind myself when I can all other day to come. I hope you do, too. Merry blessings to all of you this eve. All my love!
Thursday, December 23, 2010
Week 20 Part 4
Yesterday (Wednesday) Charito got off of work by 2 pm and brought us Mcds at the hospital by 3pm. He had every intention of visiting a bit and then finishing up some Christmas shopping before returning home to Amy and the boys. But...Grayson missed him so much they kept playing and goofing off til 8pm. It was precious! I have great pics of those moments I will upload later.
While daddy was here "Shell" , another of G's fav nurses, was on duty and she wished we were home already! As happy as she was to see us she wanted to push out to get home! Luv her. So, she convinced a dr to do another metho draw before midnite (protocol is every 12 hours). The 10 am draw of the day was at .16 We were convinced that after 3pm at two doses throughout the day of Leucovorin that we would be good to go! It was worth a shot even if I didnt pull up in front of the house until midnite. We drew again at 5 pm and got the result shortly after 9 pm.
NOT going home obviously. The next draw would not be until 5 am Thursday. Oh well, we tried!!
G and I spent the rest of the nite flipping thru channels and waiting fo rhis hyper mood to take it down a notch. He was quite the goof!
He finally passed out at 10 pm. I was a bit restless. The nurse and I kept changing those diapers every 35 minutes (fluid rate was 90 ml/hr) just be sure he was reaching those parameters and NOTHING was gonna jinx things for that next draw. Ph stuck around 8.5. Silly to get excited about numbers but that is our life now. During this hospital stay we NEVER had to play the musical IV bag game. He did great! Other than a surprise diagnosis of RSV it was a very good stay. HE REALLY DID GREAT!
We were interrupted last night (early Thursday morn) at 4 am for a saline treatment. I was so tired, out cold, that I never noticed the therapist enter the room. It was not until I heard G whining that I looked up. A therapist not familiar to us doing her job. Annoying! Who wakes a kid to do that. It's not like he was a respiratory patient. And the RSV was managed. He did not go back to sleep until 7 am. He was tossing and turning. Poor guy. He slept until 9:30 when Dr. Kwon caming in asking if we wanted to go home. I groggily sat up and told him of course! Metho count .05 Woo Hoo! WE ARE GOING HOME! ALL BEFORE XMAS EVE! Good job G! Kwon even said he thought we would have gone home yesterday. The drop was on such a nice track and then it sat for half a day. Oh well.
We go back to clinic on Monday or Wednesday for counts. Today ends the Interim Maintenance phase. The following Monday, Jan 3 begins our next phase. A new phase for a new year. I'll take it!
To everyone who takes the time to read our blog:
Have a blessed holiday and new year. The fact that you do read and follow shows your concern and push toward the positive we need for G. I appreciate it so. Bless you all! Cheers to a healthy year for us all.
While daddy was here "Shell" , another of G's fav nurses, was on duty and she wished we were home already! As happy as she was to see us she wanted to push out to get home! Luv her. So, she convinced a dr to do another metho draw before midnite (protocol is every 12 hours). The 10 am draw of the day was at .16 We were convinced that after 3pm at two doses throughout the day of Leucovorin that we would be good to go! It was worth a shot even if I didnt pull up in front of the house until midnite. We drew again at 5 pm and got the result shortly after 9 pm.
.17
It went up!!!
NOT going home obviously. The next draw would not be until 5 am Thursday. Oh well, we tried!!
G and I spent the rest of the nite flipping thru channels and waiting fo rhis hyper mood to take it down a notch. He was quite the goof!
He finally passed out at 10 pm. I was a bit restless. The nurse and I kept changing those diapers every 35 minutes (fluid rate was 90 ml/hr) just be sure he was reaching those parameters and NOTHING was gonna jinx things for that next draw. Ph stuck around 8.5. Silly to get excited about numbers but that is our life now. During this hospital stay we NEVER had to play the musical IV bag game. He did great! Other than a surprise diagnosis of RSV it was a very good stay. HE REALLY DID GREAT!
We were interrupted last night (early Thursday morn) at 4 am for a saline treatment. I was so tired, out cold, that I never noticed the therapist enter the room. It was not until I heard G whining that I looked up. A therapist not familiar to us doing her job. Annoying! Who wakes a kid to do that. It's not like he was a respiratory patient. And the RSV was managed. He did not go back to sleep until 7 am. He was tossing and turning. Poor guy. He slept until 9:30 when Dr. Kwon caming in asking if we wanted to go home. I groggily sat up and told him of course! Metho count .05 Woo Hoo! WE ARE GOING HOME! ALL BEFORE XMAS EVE! Good job G! Kwon even said he thought we would have gone home yesterday. The drop was on such a nice track and then it sat for half a day. Oh well.
We go back to clinic on Monday or Wednesday for counts. Today ends the Interim Maintenance phase. The following Monday, Jan 3 begins our next phase. A new phase for a new year. I'll take it!
To everyone who takes the time to read our blog:
Have a blessed holiday and new year. The fact that you do read and follow shows your concern and push toward the positive we need for G. I appreciate it so. Bless you all! Cheers to a healthy year for us all.
Wednesday, December 22, 2010
CHOO CHOO OUT OF THIS WORLD
We were not admitted to the hospital when this beauty arrived but I heard all about from anyone who knows and loves Grayson around here. This train chugged down the halls last Sunday!! Amazing or what?! G would have loved it!! I love this hospital and all they do for kiddos struggling. The train cars were filled with teddy bears followed by Santa walking right beside it. Incredible!Week 20 part 3
Wednesday
Okay, well, Grayson napped for 4 hours yesterday. Me? My mind was racing and I only got in a 30 min one. There is so much to do at home. So much to worry about all around. I cannot shut my brain off. So frustrating. It was one of those night time sleeps in which my body was totally shut down from exhaustion but I could feel my mind going. I heard when nurses entered the room every 4 hours but had no energy to say a word to them or turn my body to acknowledge them. It was a rough one.
On the positive, Triston's excitement for Christmas is out of control. I thought last year was fun to watch unfold but this year is awesome. And what a year for him to be...he deserves it all. He has survived these past 5 mos amazingly. Very similar to Grayson's road map, a few bumps in the road emotionally and security-wise. My pride for that independent, smart, mature 5 yr old (still have a hard time saying that numeral!!!) is unwaivering.
His excitement level is pretty high today, too. Amy and Ayden were supposed to babysitt and sleepover yesterday but A came down w the stomach virus that is floating around. I told her to keep him home and I would come up w the at-the-time-nonexistent-plan B. We REALLY need to stop the cycle! And poor A wanted to be there so bad that he kept telling Neal and Amy that he would "play far away from Triston" and "G in the hospital so I don't have to get him sick, too". He tried so hard to convince them as "the pee is coming out my butt", his definition of diarrhea. But all is well today and they are heading to our place this am.
Triston has had a fun-filled week, actually. Monday he had a play date with his old school buddy Jackson (thank you, Alysa). Then a surprise visit from his Ninang Leslie Monday night and Tuesday night. She IS a big kid through and through and was able to help us in a jam with a bonus FUN play mate for T. You should have heard the squeal in his voice when I called him to say she was returning last night. It really is the fun he needs on vacation, in my absence, and the best kind of healthy distraction. I can only allow so much computer games, Wii and tv.
As for Grayson he keeps playing away and winning over each person that walks in this room (donning their isolation gear of course). This morning we had a visit from some local police officers dropping off toys. He received some Hotwheels and a Mr Potato Head. He is loving cars lately. And the opening of these packages have become my bribe for eating bites of anything and drinking!
As for updates:
His Tuesday 3 pm metho draw was 1.32
Tuesday 10 pm draw was .52 ( found that out at 8 am today)
Dr Kwon visited at 9:30 am today and was pleased with progress. I asked for a CBC seeing as Kwon talked so confidently of us being home today even though neither of us had the latest metho count. Kudos to his optimism!
Received CBC results by 10 am and Hgb 8.8 Platelets 327 WBC 1.6 All good counts
Still do not have his ANC (whether he is neutropenic)
Will be interesting to see that ANC count bc his WBC is good and yet he tested positive for RSV. Remember I said he came in Sunday with cough that started Friday night? By Sunday afternoon I treated it like an asthma attack and he was cough free Monday and Tuesday. He woke with a bit of cough this am but that followed a crying fit. I stepped out to get coffee and when I returned the respiratory therapist (one I am unfamiliar with) had woken him to treat him. He became upset and started crying creating mucous and cough and runny nose. He has has had that runny nose since. That annoyed me, I will say that. Any other person would come back. Kids need their rest! It has set a mood for him and now he is fighting to stay awake even though he is yawning every few minutes for the past hour. I will be reporting that incident. That RPC (respiratory panel/viral nose swab looking for all viruses) was taken early Sunday and we finally got the results this morning. He doesnt seem to have all the obvious symptoms of RSV but he must have been living in him to test positive. His cough was not unbearable, he was not wheezing or having any difficulties breathing. In fact, anyone who has listened to him with a stethoscope since our arrival has commented how clear he sounds. So, who knows. It is what it is. The only thing it made me think of was Caden. He has had a cough/cold for week now. We have been staying on top of it w saline nebrulizer treatments and nose suctioning to be sure that mucous never reaches his lungs. He has not had any wheezing according to Charito. Fellow mommy, Auntie Amy, will give me a mommy opinion today when she's there. But when we saw Belmonte last Thursday Caden was clear as well. RSV is much more dangerous in infants and then w any child if they are having any difficulities breathing, eating, drinking or just functioning. Those characteristics result in hospital stays. Otherwise, it is just treated at home as a respiratory infection that needs to be monitored and clear up on its own. I made sure of those statements with the nurse this morning bc I cannot help but worry about Caden from afar.
Okay, ANC 900. Not bad.
Daddy getting out of work at 3 today so he is going to visit us!
Now we just wait for the results from today's 10 am metho draw.
We just gave G a bath and he is finally down for nap (1 pm). He was so overtired he whined during the whole bath. This whining was an extension of the whining he did when another set of police officers came by with toys and he wanted two cars instead of one. He was too tired to even listen to my reasoning of other kids turns. He just melted. Poor guy.
I hope it is comforting for all you to know how much this hospital works to make sure our sick kids are cared for inside and out, in every developmental domain. Making sure they don't miss out on some of the things they are potentially going to bc of logistics and conditions. They work their butts off to make any special day happen for these kids. It continues to amaze me each week. And I am not just talking about present drop offs. This includes the parking passes, gas cards, meal tickets, volunteer play dates, art activities, story times, hand-made blankets and pillow cases, his own personal ID badge bc he steals the official ones off his visitors, the press related events they have invited him to and so much more. I wish I could describe the amount of care each person shares with him. He is so popular and loved here. That makes me feel safer than ever, knowing I have faces I can count on. They even gave us a Toys R Us gift card and sweet note thanking us for our appearances in media related events. PLEASE! I am totally giving it back. It is OUR honor and pleasure to help them anyway we can. It is US telling OUR story bc knowledge is half the battle. There is nothing to hide here. It is G doing his job to fight and me as his mommy fighting right alongside him. Many of the events we participated in were activities we were taking of advantage of anyway. Our presence was the icing on the cake for them, but the opportunities for play, fun, new experiences and "normal" were thanks to them. It is I who is thankful to them!
Feelings
I kind of feel like I am in limbo this week. I forget Christmas is coming and then remember when a nurse walks in w decor scrubs. Or when I hear Triston's voice. Or turn on the tv with all the santas everywhere. G is obsessed with santas and anything snow related is a snowman eventually. He cracks me up.
I am trying to remember where I hid presents. If I am even done shopping? There is so much to sort through. And then I tried to surprise Charito with a sentimental gift and he discovered it online when sorting through our bills. I can't hide any shopping from him!
And then there's the overwhelming support and care from those around us. Did I mention the bins of Christmas presents that arrived at our home from Triston's shool?! No to mention the cards and gift certificates from the entire school and parish staff. Yes, at some point they organized a letter between the prek staff and prek rooms and we received wrapped gifts "from Santa" for all three of our boys. My sneeky friend Najette passed on my boys' wish list and used it for their own Santa workshop efforts. Again, OVERWHELMING!When I spoke to Triston's teachers (and the spy we call Najette) they explained they did not want us to worry about ANYTHING for the holiday. Stress-free. It's a simple reminder that people with hearts bursting to share love and peace are what we are surrounded by during this difficult time. People who just want to ease the pain for our whole family. We are blessed in so many ways.
So I know it is supposed to be stress-free but I can't help but WANT to be a part of our usual Christmas routine. Make it perfect. And I KNOW it has nothing to do with all the material items. IT IS about FAMILY together but I want it to be perfect for my boys. I want us all together. Smiles everywhere. Love from top to bottom. A positive Christmas to remember.
Just alot to think about that's all.
Update:
10 am draw results---- .16
Still not below .1 but getting there.
Soooooo, one of our fav nurses came in specifically to work w G tonight and she slyly suggested another draw occur before 10 pm tonight just in case there was the slightest chance the metho count would be low enough to go home. I wouldnt even mind going home at midnite tonite! Just the thought of the possibility is reassuring. We shall see. He received a dose of Leucovorin at 4:30 pm and then a metho draw at 5:15. Keep your fingers crossed. It would just be a nice surprise. I was mentally preparing myself for chance of not being home at all for Christmas. I was even realistic of hte chance we would be home Thursday or Friday. But tonight would be great!!!
Keep you posted! And of course, I have goofy pics of the clown to post of this hospital stay. Coming soon!
Okay, well, Grayson napped for 4 hours yesterday. Me? My mind was racing and I only got in a 30 min one. There is so much to do at home. So much to worry about all around. I cannot shut my brain off. So frustrating. It was one of those night time sleeps in which my body was totally shut down from exhaustion but I could feel my mind going. I heard when nurses entered the room every 4 hours but had no energy to say a word to them or turn my body to acknowledge them. It was a rough one.
On the positive, Triston's excitement for Christmas is out of control. I thought last year was fun to watch unfold but this year is awesome. And what a year for him to be...he deserves it all. He has survived these past 5 mos amazingly. Very similar to Grayson's road map, a few bumps in the road emotionally and security-wise. My pride for that independent, smart, mature 5 yr old (still have a hard time saying that numeral!!!) is unwaivering.
His excitement level is pretty high today, too. Amy and Ayden were supposed to babysitt and sleepover yesterday but A came down w the stomach virus that is floating around. I told her to keep him home and I would come up w the at-the-time-nonexistent-plan B. We REALLY need to stop the cycle! And poor A wanted to be there so bad that he kept telling Neal and Amy that he would "play far away from Triston" and "G in the hospital so I don't have to get him sick, too". He tried so hard to convince them as "the pee is coming out my butt", his definition of diarrhea. But all is well today and they are heading to our place this am.
Triston has had a fun-filled week, actually. Monday he had a play date with his old school buddy Jackson (thank you, Alysa). Then a surprise visit from his Ninang Leslie Monday night and Tuesday night. She IS a big kid through and through and was able to help us in a jam with a bonus FUN play mate for T. You should have heard the squeal in his voice when I called him to say she was returning last night. It really is the fun he needs on vacation, in my absence, and the best kind of healthy distraction. I can only allow so much computer games, Wii and tv.
As for Grayson he keeps playing away and winning over each person that walks in this room (donning their isolation gear of course). This morning we had a visit from some local police officers dropping off toys. He received some Hotwheels and a Mr Potato Head. He is loving cars lately. And the opening of these packages have become my bribe for eating bites of anything and drinking!
As for updates:
His Tuesday 3 pm metho draw was 1.32
Tuesday 10 pm draw was .52 ( found that out at 8 am today)
Dr Kwon visited at 9:30 am today and was pleased with progress. I asked for a CBC seeing as Kwon talked so confidently of us being home today even though neither of us had the latest metho count. Kudos to his optimism!
Received CBC results by 10 am and Hgb 8.8 Platelets 327 WBC 1.6 All good counts
Still do not have his ANC (whether he is neutropenic)
Will be interesting to see that ANC count bc his WBC is good and yet he tested positive for RSV. Remember I said he came in Sunday with cough that started Friday night? By Sunday afternoon I treated it like an asthma attack and he was cough free Monday and Tuesday. He woke with a bit of cough this am but that followed a crying fit. I stepped out to get coffee and when I returned the respiratory therapist (one I am unfamiliar with) had woken him to treat him. He became upset and started crying creating mucous and cough and runny nose. He has has had that runny nose since. That annoyed me, I will say that. Any other person would come back. Kids need their rest! It has set a mood for him and now he is fighting to stay awake even though he is yawning every few minutes for the past hour. I will be reporting that incident. That RPC (respiratory panel/viral nose swab looking for all viruses) was taken early Sunday and we finally got the results this morning. He doesnt seem to have all the obvious symptoms of RSV but he must have been living in him to test positive. His cough was not unbearable, he was not wheezing or having any difficulties breathing. In fact, anyone who has listened to him with a stethoscope since our arrival has commented how clear he sounds. So, who knows. It is what it is. The only thing it made me think of was Caden. He has had a cough/cold for week now. We have been staying on top of it w saline nebrulizer treatments and nose suctioning to be sure that mucous never reaches his lungs. He has not had any wheezing according to Charito. Fellow mommy, Auntie Amy, will give me a mommy opinion today when she's there. But when we saw Belmonte last Thursday Caden was clear as well. RSV is much more dangerous in infants and then w any child if they are having any difficulities breathing, eating, drinking or just functioning. Those characteristics result in hospital stays. Otherwise, it is just treated at home as a respiratory infection that needs to be monitored and clear up on its own. I made sure of those statements with the nurse this morning bc I cannot help but worry about Caden from afar.
Okay, ANC 900. Not bad.
Daddy getting out of work at 3 today so he is going to visit us!
Now we just wait for the results from today's 10 am metho draw.
We just gave G a bath and he is finally down for nap (1 pm). He was so overtired he whined during the whole bath. This whining was an extension of the whining he did when another set of police officers came by with toys and he wanted two cars instead of one. He was too tired to even listen to my reasoning of other kids turns. He just melted. Poor guy.
I hope it is comforting for all you to know how much this hospital works to make sure our sick kids are cared for inside and out, in every developmental domain. Making sure they don't miss out on some of the things they are potentially going to bc of logistics and conditions. They work their butts off to make any special day happen for these kids. It continues to amaze me each week. And I am not just talking about present drop offs. This includes the parking passes, gas cards, meal tickets, volunteer play dates, art activities, story times, hand-made blankets and pillow cases, his own personal ID badge bc he steals the official ones off his visitors, the press related events they have invited him to and so much more. I wish I could describe the amount of care each person shares with him. He is so popular and loved here. That makes me feel safer than ever, knowing I have faces I can count on. They even gave us a Toys R Us gift card and sweet note thanking us for our appearances in media related events. PLEASE! I am totally giving it back. It is OUR honor and pleasure to help them anyway we can. It is US telling OUR story bc knowledge is half the battle. There is nothing to hide here. It is G doing his job to fight and me as his mommy fighting right alongside him. Many of the events we participated in were activities we were taking of advantage of anyway. Our presence was the icing on the cake for them, but the opportunities for play, fun, new experiences and "normal" were thanks to them. It is I who is thankful to them!
Feelings
I kind of feel like I am in limbo this week. I forget Christmas is coming and then remember when a nurse walks in w decor scrubs. Or when I hear Triston's voice. Or turn on the tv with all the santas everywhere. G is obsessed with santas and anything snow related is a snowman eventually. He cracks me up.
I am trying to remember where I hid presents. If I am even done shopping? There is so much to sort through. And then I tried to surprise Charito with a sentimental gift and he discovered it online when sorting through our bills. I can't hide any shopping from him!
And then there's the overwhelming support and care from those around us. Did I mention the bins of Christmas presents that arrived at our home from Triston's shool?! No to mention the cards and gift certificates from the entire school and parish staff. Yes, at some point they organized a letter between the prek staff and prek rooms and we received wrapped gifts "from Santa" for all three of our boys. My sneeky friend Najette passed on my boys' wish list and used it for their own Santa workshop efforts. Again, OVERWHELMING!When I spoke to Triston's teachers (and the spy we call Najette) they explained they did not want us to worry about ANYTHING for the holiday. Stress-free. It's a simple reminder that people with hearts bursting to share love and peace are what we are surrounded by during this difficult time. People who just want to ease the pain for our whole family. We are blessed in so many ways.
So I know it is supposed to be stress-free but I can't help but WANT to be a part of our usual Christmas routine. Make it perfect. And I KNOW it has nothing to do with all the material items. IT IS about FAMILY together but I want it to be perfect for my boys. I want us all together. Smiles everywhere. Love from top to bottom. A positive Christmas to remember.
Just alot to think about that's all.
Update:
10 am draw results---- .16
Still not below .1 but getting there.
Soooooo, one of our fav nurses came in specifically to work w G tonight and she slyly suggested another draw occur before 10 pm tonight just in case there was the slightest chance the metho count would be low enough to go home. I wouldnt even mind going home at midnite tonite! Just the thought of the possibility is reassuring. We shall see. He received a dose of Leucovorin at 4:30 pm and then a metho draw at 5:15. Keep your fingers crossed. It would just be a nice surprise. I was mentally preparing myself for chance of not being home at all for Christmas. I was even realistic of hte chance we would be home Thursday or Friday. But tonight would be great!!!
Keep you posted! And of course, I have goofy pics of the clown to post of this hospital stay. Coming soon!
Tuesday, December 21, 2010
Week 20-part 2
Monday
We were busy over here! We settled into our green cocktail and played, sang, slept our day away. A few Marines visited with toys for Christmas. G was sleeping but Alana knows our boy and handed a Thomas video projector gift set off to me. I made sure to make my way to the hallway to thank those daring men for all they do for our country. They deserved hugs!
He ate a bit throughout the day. Bites of pears, breading off of fish sticks and a bribery of Pediasure. By 10 pm the cocktail was done and his first methotrexate draw was taken. I received those results at 4 am today (Tuesday) it was at 90.35. As long as it is under 150 we are sailing well.
We are back to fighting that pee pee monster again, though. Anytime he is sleeping he does not pee. There were a few times I had to actually wake him and make him stand up or walk a bit in our room to make him pee (1 am and 4 am). They need their parameters to chart and we need that metho out of him. It made for a crabby time for me. But he has REALLY been napping and he makes up for it then. Surprisingly, he was able to go right back to sleep after any interruptions.
Tuesday
We woke at 8:30 am. He has been so chill and in such a good mood (no ants in his pants) that I have been able to take a shower in those first 10 min of his wake while he watches tv. Then I order our breakfast and we cuddle. He ate a bit of french toast sticks and pears.
By 9 am we had visitors from the local fire department. They came in and took pics with G and gave him a B.O.B stuffed animal and a set of hotwheels (more to add to our car wash later).
I hugged them as well to thank them for all they do. Heroes all around us if we just take the time to pause and look around. They are standing right next to us at times.
Then at 10 am we had a special visit from an author. His name was Howard and he just wrote a Christmas book that is about to be published. He was making his rounds to read it to children. It is a book about a Santa without a beard. Very cute story! He had his wife with him and they are the most adorable couple. Bragging about their grand and great grandchildren. He was definitely a "Gramps" while he read the book with such enthusiasm.
After they left we read a few books brought to us by volunteers and munched on some Gingerbread house. We have not received the results of the viral swab or the the most recent methotrexate draw. But, now it is def time for his nap. Maybe me, too?
We were busy over here! We settled into our green cocktail and played, sang, slept our day away. A few Marines visited with toys for Christmas. G was sleeping but Alana knows our boy and handed a Thomas video projector gift set off to me. I made sure to make my way to the hallway to thank those daring men for all they do for our country. They deserved hugs!
He ate a bit throughout the day. Bites of pears, breading off of fish sticks and a bribery of Pediasure. By 10 pm the cocktail was done and his first methotrexate draw was taken. I received those results at 4 am today (Tuesday) it was at 90.35. As long as it is under 150 we are sailing well.
We are back to fighting that pee pee monster again, though. Anytime he is sleeping he does not pee. There were a few times I had to actually wake him and make him stand up or walk a bit in our room to make him pee (1 am and 4 am). They need their parameters to chart and we need that metho out of him. It made for a crabby time for me. But he has REALLY been napping and he makes up for it then. Surprisingly, he was able to go right back to sleep after any interruptions.
Tuesday
We woke at 8:30 am. He has been so chill and in such a good mood (no ants in his pants) that I have been able to take a shower in those first 10 min of his wake while he watches tv. Then I order our breakfast and we cuddle. He ate a bit of french toast sticks and pears.
By 9 am we had visitors from the local fire department. They came in and took pics with G and gave him a B.O.B stuffed animal and a set of hotwheels (more to add to our car wash later).
I hugged them as well to thank them for all they do. Heroes all around us if we just take the time to pause and look around. They are standing right next to us at times.
Then at 10 am we had a special visit from an author. His name was Howard and he just wrote a Christmas book that is about to be published. He was making his rounds to read it to children. It is a book about a Santa without a beard. Very cute story! He had his wife with him and they are the most adorable couple. Bragging about their grand and great grandchildren. He was definitely a "Gramps" while he read the book with such enthusiasm.
After they left we read a few books brought to us by volunteers and munched on some Gingerbread house. We have not received the results of the viral swab or the the most recent methotrexate draw. But, now it is def time for his nap. Maybe me, too?
Monday, December 20, 2010
Dear Santa...
Grayson loves the Chia Pet commercials for Scooby Doo and Spongebob Chias. And he just saw the Chia tree with Star topper and yelled for me to "SEEEEEE THE STAR MOMMMMYYYY! The light turn on and off!"
Love,
Grayson's mommy
Love,
Grayson's mommy
Sunday, December 19, 2010
Week 20 part 1
We made it! The final round of the Interim Maintenance Phase. We were given permission to admit early this morning in the hopes that one day ahead of our usual Monday schedule would allow us to get home by Christmas. All week I prayed Grayson would not become febrile. And if he had to, let it happen after his bday party Saturday. Considering we all suffered from a stomach virus of some sort (even Caden who is still recovering) Grayson came out of the past 10 days of exposure practically unaffected. He had two bouts of vomit Wednesday night immediately following dairy consumption. As soon as I eliminated it from his diet he was all good. He has been on red gatorade ever since (T and G never tolerated Pedialyte and surprisingly enough Caden has been downing the unflavored kind like his new cocktail of choice. He has been on it bc he was coughing so hard he was throwing up his entire bottles when he was riding that fever of 102 on Monday and Tuesday). I only allowed him to have milk this am and he wanted MILK so bad that he even drank chocolate milk, a first! And that was only bc I knew we had the hospital to depend on if he did catch the virus big time.
Charito decided to just drop me G and I off at the hospital. We made a family thing of it. We arrived by 9:30 this morning and by 11 ish he was hooked up to fluids. Then Charito and Triston took a walk up to the cafe for yummies. Even though we were all crabby and tired from the illnesses and party preparation and recovery (it really took its toll on G afterwards even tho you would never have guessed so with the way he sucked up every bit of freedom yesterday) it was nice to have everyone together. It wasnt just G and I loading up and setting up shop in our hospital room like usual. We enjoyed a nice lunch, mini naps and I got to soak up all the cuddles I could with Caden before I left him.
Daddy and the rest of my boys took off around 2 pm. After that Grayson slept some more and I caught up on emails. It has been really hard to keep my eyes open. I miss everyone already. So much.
We started G's green cocktail at 9 pm. He is getting pretty tired after playing trains and playdoh. But boy did it take us a couple hours to get to that cocktail point, playing the Urine Ph balance game again. Once again, he would not pee while sleeping so that put a pause on things to the point I just started waking him from his mini naps and made him walk around the room in order to pee. We are also on isolation due to this nasty cough he has. Best for his protection and the fact that RSV and norovirus and oh, um a million other viruses are going around.
I hope its a fast week. I cant help but worry and think about how much needs to get done before Christmas Eve. Will we be home in time? I know it is just a day and we can have our day any other time but it is still hard to picture something other than tradition. And some might say, well it is then time for a new tradition. But you are also talking to someone who doesnt like change, much less events I have no control over anymore.
There is so much emotion wrapped up into this week. I feel like the boys' bday party was just the intro of a feelings flood to come. From this tiny room I have to monitor Caden's cold and horrendous cough from afar. Guess whether he should consume a pedialyte bottle or formula bottle via the babysitters take on his behavior. I have to keep tabs on Triston and his emotions leading up to the most exciting holiday for a 5 yr old all the while hoping he understands if I am not there xmas morn. I have to keep myself together while my husband takes part in all the wrapping and little parent things we do in xmas preparation for our children. So much I am missing but so much I need to be here for to be sure my boy gets better.
G hasn't let us down and I can't let him down. He IS the courage I need through this holiday. Psst...the arrival of my parents on Thursday is big boost for me, too! I NEED my mommy and daddy just as anyone else does.
Charito decided to just drop me G and I off at the hospital. We made a family thing of it. We arrived by 9:30 this morning and by 11 ish he was hooked up to fluids. Then Charito and Triston took a walk up to the cafe for yummies. Even though we were all crabby and tired from the illnesses and party preparation and recovery (it really took its toll on G afterwards even tho you would never have guessed so with the way he sucked up every bit of freedom yesterday) it was nice to have everyone together. It wasnt just G and I loading up and setting up shop in our hospital room like usual. We enjoyed a nice lunch, mini naps and I got to soak up all the cuddles I could with Caden before I left him.
Daddy and the rest of my boys took off around 2 pm. After that Grayson slept some more and I caught up on emails. It has been really hard to keep my eyes open. I miss everyone already. So much.
We started G's green cocktail at 9 pm. He is getting pretty tired after playing trains and playdoh. But boy did it take us a couple hours to get to that cocktail point, playing the Urine Ph balance game again. Once again, he would not pee while sleeping so that put a pause on things to the point I just started waking him from his mini naps and made him walk around the room in order to pee. We are also on isolation due to this nasty cough he has. Best for his protection and the fact that RSV and norovirus and oh, um a million other viruses are going around.
I hope its a fast week. I cant help but worry and think about how much needs to get done before Christmas Eve. Will we be home in time? I know it is just a day and we can have our day any other time but it is still hard to picture something other than tradition. And some might say, well it is then time for a new tradition. But you are also talking to someone who doesnt like change, much less events I have no control over anymore.
There is so much emotion wrapped up into this week. I feel like the boys' bday party was just the intro of a feelings flood to come. From this tiny room I have to monitor Caden's cold and horrendous cough from afar. Guess whether he should consume a pedialyte bottle or formula bottle via the babysitters take on his behavior. I have to keep tabs on Triston and his emotions leading up to the most exciting holiday for a 5 yr old all the while hoping he understands if I am not there xmas morn. I have to keep myself together while my husband takes part in all the wrapping and little parent things we do in xmas preparation for our children. So much I am missing but so much I need to be here for to be sure my boy gets better.
G hasn't let us down and I can't let him down. He IS the courage I need through this holiday. Psst...the arrival of my parents on Thursday is big boost for me, too! I NEED my mommy and daddy just as anyone else does.
Birthdays
Most of us (all but Caden) remained healthy enough (some of us up until the last minute) to make it to the boys' bday party Saturday. I just wanted to let you all know that it was successful and heartwarming and worth every cent to see the smiles on Triston and Grayson's faces. Pics coming as soon as I can get my hands on the disk ( I forgot it at home before we rushed our tired butts to the hospital this morning).
Thursday, December 16, 2010
Brighter ZZZZZs
Grayson and I participated in this activity to get out of the room. A change of pace from the playroom down the hall. I figured why not. But, I had never used a sewing machine before. I remember watching my Great Grandma Adeline sew all time, in amazement. NOW I can say I know how. Grayson helped! And not only picked out a design for himself, but Triston too. Space for T and Santa for G. 
I met some amazing women that day. The organization began all because a mom suffered right alongside her son. I know what that is like. The group of women I met were truly inspirational. Visit their website and learn all about it, and how you can help if you choose. I would be happy to deliver any kits at the hospital if you want free delivery ;)
And here is their Holiday newsletter:
I had no idea our pics would be posted. I just thought they were taking pics for their own journaling and would send them via email to me. Well, they did that and then some. I am touched. The Chicago chapter correspondent also contacted me to thank me and wish us happy holidays and a happy birthday to the boys. Too sweet. We are so blessed by the amazing people that have entered our lives in what could be such a scary place, and instead we call it our second home. Thank you!
Holding up his pillowcase creation!
Tuesday, December 14, 2010
U British?
C'mon break out your British accent and repeat after me....HAAAAAAAHHHMMMThat is what Grayson calls any round piece of lunchmeat-ham. The past 3 weeks he has been on a bologna kick, oh sorry, "ham" kick and this is how much he loves it:
We tried not to pee our pants as he declared "Taa Daaa" in the middle of dinner last night ( a feat in and of itself for all of us to be at the table together these days, it felt right and well missed). I take a look and there he had his bologna holding high onto the edge of the table! Nut! And he was so proud of himself, the ultimate magic trick. Even Triston was laughing. Then he proceeded to kiss the bologna (see above).
I am totally grossed out by bologna so this is quite the sight for me. And to think weeks ago he was dipping it into ranch dressing. Gross. But somehow he makes it look cute, huh?
Monday, December 13, 2010
Last minute pics of Week 18 hospital stay
Strolling down
the hall as he turns to tell J, "C'mon J, your turn!" Wierd to think there we are chasing him down the hall as he is hooked up to IV, a IV string instead of a "leash" to keep him nearby as he gets pumped with chemo and fluids. Still takes some getting used to. But still cute as hell!
Cuddling with his bear he was given from the Humor Cart. Kathy (our fellow newspaper pal) offered him to choose one for Triston (after he asked "Dinosaur for Tis Tis"), how sweet.
Telling me, "Watch mommy! Wooh, wooh wooh" as he would fall backward and plop onto pillows.
We also make tunnels with our pillows for the cars AFTER our car washes (there is a system here, ya know!) Look at those cutey toesies inside the tunnel!
the hall as he turns to tell J, "C'mon J, your turn!" Wierd to think there we are chasing him down the hall as he is hooked up to IV, a IV string instead of a "leash" to keep him nearby as he gets pumped with chemo and fluids. Still takes some getting used to. But still cute as hell!
Cuddling with his bear he was given from the Humor Cart. Kathy (our fellow newspaper pal) offered him to choose one for Triston (after he asked "Dinosaur for Tis Tis"), how sweet.Telling me, "Watch mommy! Wooh, wooh wooh" as he would fall backward and plop onto pillows.
We also make tunnels with our pillows for the cars AFTER our car washes (there is a system here, ya know!) Look at those cutey toesies inside the tunnel!
Our precautions
When I arrived home from the hospital Friday Triston had a fever of 102. Since then we added another symptom-diarrhea that began yesterday. So far none today-thank goodness.
As you can imagine, our parent brains go into overdrive when we KNOW there is a virus going around the house. It is bad enough we are always on crazy germ watch w/ Grayson but it is even more difficult when someone in the house is attacked. I have been lyslol-ing (yes, that is a word...in my personal dictionary) and cracking windows and running humidifiers all weekend. And with the boys' bday party approaching I cannot help but pray it is all cleared up and no one else is bothered with it before then.
This is what we don when ANYONE is not up to par in this house:
Gotta say-he looks really cute in it, don't he? He insists on wearing it because his "white blood cells aren't working today and I don't want to get Grayson sick."That's my boy!
Friday, December 10, 2010
3rd Batch (part 5-finale)
We are home! The week flew but today draaaagggggeeeeeddddd!
Remember how yesterday's 10 am metho number was .18??????
Well, the 3pm draw number was .21 (which we didnt get until 9 pm)
You read that right-it went up!!!!!!!!!!! We wanted answers and it got kinda frustrating. Had it been explained to us that this can happen we probably would not have become as worried as we were. And yet as quick as our nurses were to get answers everyone seemed to think it was a rush factor for us bc we wanted to get home. Everyone but the nurses that is. They understand us bc they deal w us day in and out. But these resident peds kinda drive me nuts sometimes. There are a few I adore and others I would skip out on a lunch date w anytime. I insisted a resident get some answers or at least what Goodells response was when he read that count. No one knew bc he had left for the day and those that did seem to know something said he didnt seem that concerned. Fine, really that is fine w me...as long as Goodell saw it I felt better. I knew that if the count didnt budge this morning after two overnite doses of Leucovorin and Musical IVs he WOULD come to see me.
So I went to bed hoping that things would improve in the morning. He was due for another draw at 6 am which we would have results by noon (but I sure didn't go to bed before also INSISTING his HALS/HELS -electrolytes and kidney/bladder function counts-were double checked as well as that numeral .21 itself. We have been given a count w or w out a zero in there which makes a huge difference. I wanted the lab contacted to be sure.
I really didnt sleep well, to be honest. I was engrossed in Dexter season 4 and freaking about that count. I know it didnt go up much but it still worried me. I was pleased when the nurse came in and agreed to give him Lacix to make sure he pees and we help push that elimination process along (and we knew it would be another night of no pee for my potty boy).
The next morning (7 am today) nurse Michelle (G calls her Shell) was assigned to us again and she assured me that the number was not to be all worked up over. SHE was the one who saw the count for the first time w Goodell over her shoulder and they both were surprised but not concerned. She was hunting it down for me while she was closing up her shift (apparently she checked relentlesslu for an hour straight). He directed her we were to be there another night and to inform him immediately if it contd to climb even the slightest. It is too bad it went up bc before the count popped up on the computer Goodell had even told her that he would let us go home if it was a .1 How nice of him even though usual protocol is below .1 Too bad, huh? It just stunk I couldnt get that message from her directly instead of some resident who really seemed annoyed by me. Can you tell I LIKE who I LIKE and get a bit controlling?! After I spoke to Michelle I was able to drop it and move on. He had two doses of Leucovorin since and lots of pee so I was pretty sure we would be good to go.
By 9 am Michelle and a resident Ped I like came in with the good news. The metho level was .07, finally under 1. We were going home!
At 10 am several coordinators entered our room-Child Life Mangers, Nurse Leadership and Publicity requesting our presence for a videotaping regarding the Humor Cart (again). We chatted and smiled about the Tribune article. It was really nice to discuss how bittersweet that moment was with them. Well, I guess since then many other newspapers and tv channels want a piece of the Humor Cart and we were invited to participate again. This time I would be interviewed longer and G would be filmed playing w today's volunteer of the Humor Cart. We were headed to the play room anyway, so why not?
In usual hospital time-things got delayed and such and we did not get done filming until almost 1pm. But it was so worth it. I enjoyed talking with the team and before I knew it was crying during my interview. Sometimes the simplest questions are the most emotional for me (or is it those from strangers)-'What does Grayson's smile mean to me when he sees that Humor Cart?' I was answering just fine...then a breath...then tears. The truth is-that hospital means more than words can ever express. Every tiny nook touches my soul.
I believe I noticed the camera crew was from WCIU, but I will let you know when I know more. Either way, G enjoyed almost 3 hours of play outside of his room today. He even met a little friend, J. The two of them followed each other up and down the halls w their mini shopping carts and strollers while everyone else ooohed and ahhhhed over them. Imagine two little diaper buddies chasing those halls in a unit that mostly cared for teens this week. They were by far the littlest racers down those hallways. It was a precious photo I wish I could have taken. So many times G yelled to him-"Wait _____, I coming! I go shopping for chicken!"
After our taping and eventful play times G and I headed back to get home. We had to wait a bit for the heparin to arrive in order to de-access him. G fell asleep while we waited.
From the moment G put his coat on he asked for T. He named all the things he wanted to play with together. He mentioned the items he chose for T in the hospital. There was no containing his excitement to get back home to his bro. Melted my heart even when I stepped out into that cold air that I hadnt seen in days.
We have Monday off! Counts good enough to wait til following week but I made a request that squashed "the week off" hurrahs. I asked if we could come in Thursday (since I am already there for Caden's checkup) for a blood count. We really want to know his counts before the boys' bday party next Saturday. It would be a whole new reason for me to cry if G couldnt attend his own bday (even tho it consists of t's friends and classmates some of those kids' siblings are G's friends, too). I am taking every precaution. When I arrived home T had a fever. It is def a virus of some sort. He is now wearing a mask. I am keeping G away from all of T's school activities next week due to the crowds (his in school bday party, holiday concert, and holiday party). This party is THAT important to us.Why---here is a perspective
Dont ask me what I am feeding anyone at the party bc I dont have it figured yet. I have only had the time to purchase favors. I am skipping decorations bc who cares! But food and cake are an issue and I am behind on that. I still have xmas shopping to finish up that needs to get done really soon bc G and I are back in the hospital the Monday before xmas. The list of errands is endless the next week. But for now I am gonna close this post with this thought-
when you think of this this evening know that we are already soaking up the hugs, kisses (behind masks) and laughs. It has pretty much been non stop since G walked in the door. We are ecstatic to be home and pleased to know it was another week of treatment w lil to no bumps in the road. The happy energy in our living room as I write this is enought to make anyone smile on thier worst day. I love it!! I missed it!! I love all 4 of my boys sooo much!
Remember how yesterday's 10 am metho number was .18??????
Well, the 3pm draw number was .21 (which we didnt get until 9 pm)
You read that right-it went up!!!!!!!!!!! We wanted answers and it got kinda frustrating. Had it been explained to us that this can happen we probably would not have become as worried as we were. And yet as quick as our nurses were to get answers everyone seemed to think it was a rush factor for us bc we wanted to get home. Everyone but the nurses that is. They understand us bc they deal w us day in and out. But these resident peds kinda drive me nuts sometimes. There are a few I adore and others I would skip out on a lunch date w anytime. I insisted a resident get some answers or at least what Goodells response was when he read that count. No one knew bc he had left for the day and those that did seem to know something said he didnt seem that concerned. Fine, really that is fine w me...as long as Goodell saw it I felt better. I knew that if the count didnt budge this morning after two overnite doses of Leucovorin and Musical IVs he WOULD come to see me.
So I went to bed hoping that things would improve in the morning. He was due for another draw at 6 am which we would have results by noon (but I sure didn't go to bed before also INSISTING his HALS/HELS -electrolytes and kidney/bladder function counts-were double checked as well as that numeral .21 itself. We have been given a count w or w out a zero in there which makes a huge difference. I wanted the lab contacted to be sure.
I really didnt sleep well, to be honest. I was engrossed in Dexter season 4 and freaking about that count. I know it didnt go up much but it still worried me. I was pleased when the nurse came in and agreed to give him Lacix to make sure he pees and we help push that elimination process along (and we knew it would be another night of no pee for my potty boy).
The next morning (7 am today) nurse Michelle (G calls her Shell) was assigned to us again and she assured me that the number was not to be all worked up over. SHE was the one who saw the count for the first time w Goodell over her shoulder and they both were surprised but not concerned. She was hunting it down for me while she was closing up her shift (apparently she checked relentlesslu for an hour straight). He directed her we were to be there another night and to inform him immediately if it contd to climb even the slightest. It is too bad it went up bc before the count popped up on the computer Goodell had even told her that he would let us go home if it was a .1 How nice of him even though usual protocol is below .1 Too bad, huh? It just stunk I couldnt get that message from her directly instead of some resident who really seemed annoyed by me. Can you tell I LIKE who I LIKE and get a bit controlling?! After I spoke to Michelle I was able to drop it and move on. He had two doses of Leucovorin since and lots of pee so I was pretty sure we would be good to go.
By 9 am Michelle and a resident Ped I like came in with the good news. The metho level was .07, finally under 1. We were going home!
At 10 am several coordinators entered our room-Child Life Mangers, Nurse Leadership and Publicity requesting our presence for a videotaping regarding the Humor Cart (again). We chatted and smiled about the Tribune article. It was really nice to discuss how bittersweet that moment was with them. Well, I guess since then many other newspapers and tv channels want a piece of the Humor Cart and we were invited to participate again. This time I would be interviewed longer and G would be filmed playing w today's volunteer of the Humor Cart. We were headed to the play room anyway, so why not?
In usual hospital time-things got delayed and such and we did not get done filming until almost 1pm. But it was so worth it. I enjoyed talking with the team and before I knew it was crying during my interview. Sometimes the simplest questions are the most emotional for me (or is it those from strangers)-'What does Grayson's smile mean to me when he sees that Humor Cart?' I was answering just fine...then a breath...then tears. The truth is-that hospital means more than words can ever express. Every tiny nook touches my soul.
I believe I noticed the camera crew was from WCIU, but I will let you know when I know more. Either way, G enjoyed almost 3 hours of play outside of his room today. He even met a little friend, J. The two of them followed each other up and down the halls w their mini shopping carts and strollers while everyone else ooohed and ahhhhed over them. Imagine two little diaper buddies chasing those halls in a unit that mostly cared for teens this week. They were by far the littlest racers down those hallways. It was a precious photo I wish I could have taken. So many times G yelled to him-"Wait _____, I coming! I go shopping for chicken!"
After our taping and eventful play times G and I headed back to get home. We had to wait a bit for the heparin to arrive in order to de-access him. G fell asleep while we waited.
From the moment G put his coat on he asked for T. He named all the things he wanted to play with together. He mentioned the items he chose for T in the hospital. There was no containing his excitement to get back home to his bro. Melted my heart even when I stepped out into that cold air that I hadnt seen in days.
We have Monday off! Counts good enough to wait til following week but I made a request that squashed "the week off" hurrahs. I asked if we could come in Thursday (since I am already there for Caden's checkup) for a blood count. We really want to know his counts before the boys' bday party next Saturday. It would be a whole new reason for me to cry if G couldnt attend his own bday (even tho it consists of t's friends and classmates some of those kids' siblings are G's friends, too). I am taking every precaution. When I arrived home T had a fever. It is def a virus of some sort. He is now wearing a mask. I am keeping G away from all of T's school activities next week due to the crowds (his in school bday party, holiday concert, and holiday party). This party is THAT important to us.Why---here is a perspective
Dont ask me what I am feeding anyone at the party bc I dont have it figured yet. I have only had the time to purchase favors. I am skipping decorations bc who cares! But food and cake are an issue and I am behind on that. I still have xmas shopping to finish up that needs to get done really soon bc G and I are back in the hospital the Monday before xmas. The list of errands is endless the next week. But for now I am gonna close this post with this thought-
when you think of this this evening know that we are already soaking up the hugs, kisses (behind masks) and laughs. It has pretty much been non stop since G walked in the door. We are ecstatic to be home and pleased to know it was another week of treatment w lil to no bumps in the road. The happy energy in our living room as I write this is enought to make anyone smile on thier worst day. I love it!! I missed it!! I love all 4 of my boys sooo much!
Thursday, December 9, 2010
3rd batch (part 4)
Toys from the humor cart and a visit from student volunteers from a nearby therapeutic day school. So sweet.
The two pillow cases we made together. He chose santa for himself and planets for Triston.
Thursday
Grayson's 42 hour methotrexate draw was at 2.02 at 4 pm yesterday.
His 48 hour draw at 10 pm last night was 0.4
He just had another draw at 10 am w a dose of Leucovorin 30 min before to help that number along. Should get those numbers soon.
CBC results as of 4 am :
WBC 2.6
Hgb 10.5
Platelets 303
ANC 1,300
Methotrexate chemo did not slam him TOO much so far. With that Hgb count no need for transfusion. ANC count indicates he is not neutropenic (he is if it goes under 1, 000). Platelets are looking good meaning no concern for new bruises.
He has been sleeping really well this stay. On his first nap of the day right now, 10:30 am. Ate a whole mini box of cheerios for breakfast. His fluids got pushed to a rate of 90 (vs the usual 60) to quicken the elimination process. Between fluids and past transfusions his body has proven to be able to handle that rate of push thru his port so we use it when we can. We are close.
So far Triston has not thrown up since last nite and I hope it stays that way. Cannot wait to get home.
I'm gonna take a Dexter break right now while he is napping!
4pm
So nap did not last long bc we needed to reach urine output parameters so he slept for 20 before we had to wake him and get him walking to pee. He has not been peeing over night or during naps. He has not for weeks. Wouldn't be a prob at home, but here in the hospital when we are constantly monitoring organ functioning it is a prob. We dont care what he drinks as long as it is something atop the IV fluids. Oddly enough he doesn't like the typical 2 yr old drinks. He does not ask for pop often even tho we allow him to drink it in the hospital. He does not like chocolate milk or many juices of any kind. He is all about milk and for some reason he has made the connection that "milk" in the hospital is pediasure and he prefers that, even when I try to sneak whole milk in. If Leukemia wasn't in the picture and he was not already potty trained (T was before his 2 yr bday) this would be the best timing! He has been sitting on the toilet doing the motions since January. Telling us when wet and dirty since March or so. But, alas we will hold off til we know we are not in any stages of treatment that could compromise our success. I don't want him to get frustrated or regress in any way (me either).
While we were up we headed to the play room, visited the therapy dogs, received a visit from the humor cart (the same lady we shared the newspaper with-it was so nice to see her and share our post stories), sewed our own pillowcases and now Aerum is reading to him. It's a precious love/hate relationship I have w this place.
10 am draw was .18. Not quite there yet.
Drs ordered a 3 pm draw of his methotrexate level. Waiting on those results. Maybe go home tonight?
Either way, I hope it is an early bed time for the both of us. I have a pounding headache.
5:30pm
What am I thinking? We live on hospital time here. No way we are going home tonight. We have not received metho count yet.
6pm
He just fell asleep. I'm taking some tylenol and vegging out in front of dexter.
Wednesday, December 8, 2010
3rd batch (part 3)
We received our metho count for the 42 hour mark-----2.02. We are getting close! So he is due for another draw at 10 pm and his dose of Leucovorin, that vitamin "rescue drug " that facilitates the breakdown and repair of the chemo in his system (in one hour for the 48 hour mark). I also asked for a CBC when they draw again in the morning. I am curious of his platelets and hemoglobin counts. If he is due for a transfusion I would much rather it be taken care of while we sit and wait out the metho level instead of reaching a green light for discharge BUT getting stuck here for the transfusion to take place. There is no need for a CBC to be taken after the metho level is in the safe zone when we could be monitoring it all along.
Okay, NOW I am gonna settle down with G. Btw-T threw up again and Najette reminded me the norovirus is going around school. Let's hope it is not what we have going on. So far no diarrhea or fever. He fell asleep after drinking some gatorage and we are going to keep him home from school tomorrow. Ugh--I just wish I was lying next to him right now. I didn't even get to talk to him afterschool today, he was too busy with vomit and play.
Okay, NOW I am gonna settle down with G. Btw-T threw up again and Najette reminded me the norovirus is going around school. Let's hope it is not what we have going on. So far no diarrhea or fever. He fell asleep after drinking some gatorage and we are going to keep him home from school tomorrow. Ugh--I just wish I was lying next to him right now. I didn't even get to talk to him afterschool today, he was too busy with vomit and play.
3rd batch (Part 2)
Breakfast time
Play and art
Lounging during quiet movie time
When we arrived at clinic Monday he was prepared for a spinal and CBC. Then if all is good we head to admissions. Obviously, our numbers are good bc here we are!
As of Monday, Dec 6:
Hgb 11.5
WBC 5, 180
platelets 320
ANC 2, 620
REALLY good numbers.
Too bad they were gonna get crushed by a 24 hour chemo treatment.
Our Monday looked like this:
9 am arrived to clinic
CBC report arrived by 9:45
Done with the spinal injection (intrathecal) of methotrexate by 11 am
Headed to the au bon pain bakery for To Go lunch and then to admissions
In our room by noon
Hydration prep of fluids began at 3 pm (lasting 6 hours)
By 9 pm his urinalysis reached the correct parameters to begin the methotrexate
(a record time for G!)
Began methotrexate (the neon green one) by 10 pm along w fluids thru his port (lasting 24 hours
By 10 pm Tuesday night we pulled the methotrexate and drew our first toxicity level (see above for that count). Another record for G-no hangups along that 24 hour route like last time. He also received his dose of Vincristine (push through his port).
He has been on fluids since and we are playing Musical IV fluids bags to keep his urine PH between 7-8. 9 is too high and 6 too low. Thus effecting the kidneys and spleen.
Today is Wednesday and he has not had a CBC since Monday but his first toxicity level draw of the day was 85. Anything under 150 at the first draw (24 hours since methotrexate started) is good. Now we wait for that number to fall below 1.
He is in a good mood with a few tantrum bouts today. It seems today he has been hitting a tired wall every 4-5 hours and takes a catnap. But today we went on a few walks, hit up the playroom and had a visit from the humor cart.
It actually has been a pleasant week so far. We just keep waiting on those numbers!
We have had one of our fav nurses Jenn and a new one, Jessica. We really like her! Someone I can talk Dexter talk with! I am catching up and finally reached season 3 last night. I am getting there. It is rather addcitive.
Mamac has been taking day duty with Triston and Caden before she heads to work.
Night duty-My Aunt Candy (AC) and Uncle Tim watched T and Caden Monday and Tuesday and T told me he had lots of fun. I am surprised she didn't kidnap Caden each night and take him home with her!
Today and tomorrow Lula Mel is on night duty, thanks to Papac being able to drop her at our place. I am worried about T. I just spoke to Tita Mel and he threw up afterschool, so instead of Charito visiting us tonight I told him to go home and monitor Triston. I hope he is ok. It is so hard when I am not there.
G had a decent appetite today-oranges, pears, strawberries and spaghetti. We are pushing the pediasure bc that seems to be helping with that ph balance, especially in the last few hours. It is now 8 pm and I am ready for bed. He is already in the zone, with a bit of sillies here and there.
Like this one....
Remember how we place cotton balls in his diaper to measure his urine output? Well, he found one under the blankets today and I heard, "OH MAN! Bryley make mess! Bryley! You fix it!" , in his typical dicator-like voice. I bust out laughing! I recall him at the age of one as we setup the Christmas tree. White cotton fluff fell out of one of the boxes and he insisted it was from Bryley's body! He really was concerned. I remember him repeating oh no and calling out to her. He followed her around trying to place it on her tail or anywhere she had white fur. It became a hopeless feat but hilarious nonetheless. Or was that Triston-again, brain mush but was def one of my guys. At least I can say I KNOW it wasn't Caden!
Monday, December 6, 2010
3 rd Batch
Today marks our 18th week of chemo. 18th week of Leukemia. 18th week of all this. We are nearing that 6 mos mark and that moment will be nothing more or less than bittersweet. We are progressing along our journey, yet still wishing to hit the delete button.
I despised some of the thoughts I had on our ride to clinic this morning. There I was, hoping for good counts, goood enough for us to get admitted. Odd, huh? Wishing to be in the hospital for a week? But, if his bone marrow is cooperating even when dumping all this poison into his pipes we hope to stay on track. Meet our finish line someday. I hoped for us to take care of this batch this week not next-too much to miss out on next week. Triston's bday. Christmas concert and holiday party. Events I want to be there for. I cannot disappoint him.
It urked me to put the finishing touches and final words to the little things I prepared for Triston in my absence this week. This weekend I made him a paper train and wrote "___(last name here)_____ Cargo Line" on the freight cars. I told him whenever he is thinking of me or missing me he can look at his train and I am thinking of him. We will remember each other and how much we love each other. I laid out some afterschool activities for him as well.
I ran across this article on facebook: http://www.hybridmom.com/node/1979
It reminds of what us moms do on a daily basis. And MOST days, we are happy to, bc we could not imagine a life without our children. I KNOW now more than ever the truth behind that statement. But I lead the life in that article and then some. My MOST days become MANY days. Days that I hold so many different roles, and at times I can't even keep track of myself along the way. I have noticed that more so the past few weeks. I am emotionally or worriesome -like tired. I am so forgetful lately. That organized being has been lost along the way. It took us forever to get out of the house as a family of 5 on Sunday for my family's Thanksgiving in Roselle. I am out of practice when it comes to adventuring. I ran around like a chicken w my head cut off trying to gather the usual diaper bag stuff plus the Grayson medical stuff. I remember feeling disappointed in myself for the lack of "mommy in me". Will I get over that?
My roles as mommy, cleaner, chef (not so much thanks to friends and frozen Costco dinners), shopper, interpreter, mediator, nurse but without the license, protector, hugger, kisser, clown, fixer, wifey, secretary, doctor-clinic-hospital advocate and personal manager to G, researcher, and doer of special touches to keep my kids sane, loved and safe during this time overlap constantly. And unfortunately, in January, I need to add working mom and spec ed teacher once again to that list.
There is no word big enough to express my fear for that month. I seriously question myself and how I am going to juggle it all. I know I will eventually reach the morning of and get thru it somehow bc we all do what we have to do. But knowing that the day will pass and before I know it I will be home at the dinner table w the day behind me doesnt make it any easier. The flood of anxiety that consumes me just with the simple thought of walking through those doors is overwhelming. The tears want to overflow right along with the thought itself. Facing people, questions, reliving that moment of diagnosis. Real friends there won't ask or confront. I know that. But it's the uncertainty. Not to mention re-entering a world I haven't even thought of, literally, in months. Any other maternity leave I have touched base for info on my students (even completed the report cards from my home) but this time it is more than different. It is another world I feel so unfamiliar with. A life I used to know and am forced to return to. Insurance just isnt fair when it comes to cancer that is for sure. How am I going to even be half as good as I was? How? I have been proud of myself as a teacher (in the past few yrs), confident in my strategies and implementation. And even more so because of the amazing staff I get to work with. I will need them now more than ever. How to teach? Those are files I haven't opened in my head in so long and I will need someone to push me along the way. I know most would say it is like riding a bike, which I am sure it will be. But I can't help but feel like I will need my training wheels on for awhile. I know it is just another chapter to this journey, but boy does it feel like a heavy one. A heavy chapter to add to our "new normal" life book.
I despised some of the thoughts I had on our ride to clinic this morning. There I was, hoping for good counts, goood enough for us to get admitted. Odd, huh? Wishing to be in the hospital for a week? But, if his bone marrow is cooperating even when dumping all this poison into his pipes we hope to stay on track. Meet our finish line someday. I hoped for us to take care of this batch this week not next-too much to miss out on next week. Triston's bday. Christmas concert and holiday party. Events I want to be there for. I cannot disappoint him.
It urked me to put the finishing touches and final words to the little things I prepared for Triston in my absence this week. This weekend I made him a paper train and wrote "___(last name here)_____ Cargo Line" on the freight cars. I told him whenever he is thinking of me or missing me he can look at his train and I am thinking of him. We will remember each other and how much we love each other. I laid out some afterschool activities for him as well.
I ran across this article on facebook: http://www.hybridmom.com/node/1979
It reminds of what us moms do on a daily basis. And MOST days, we are happy to, bc we could not imagine a life without our children. I KNOW now more than ever the truth behind that statement. But I lead the life in that article and then some. My MOST days become MANY days. Days that I hold so many different roles, and at times I can't even keep track of myself along the way. I have noticed that more so the past few weeks. I am emotionally or worriesome -like tired. I am so forgetful lately. That organized being has been lost along the way. It took us forever to get out of the house as a family of 5 on Sunday for my family's Thanksgiving in Roselle. I am out of practice when it comes to adventuring. I ran around like a chicken w my head cut off trying to gather the usual diaper bag stuff plus the Grayson medical stuff. I remember feeling disappointed in myself for the lack of "mommy in me". Will I get over that?
My roles as mommy, cleaner, chef (not so much thanks to friends and frozen Costco dinners), shopper, interpreter, mediator, nurse but without the license, protector, hugger, kisser, clown, fixer, wifey, secretary, doctor-clinic-hospital advocate and personal manager to G, researcher, and doer of special touches to keep my kids sane, loved and safe during this time overlap constantly. And unfortunately, in January, I need to add working mom and spec ed teacher once again to that list.
There is no word big enough to express my fear for that month. I seriously question myself and how I am going to juggle it all. I know I will eventually reach the morning of and get thru it somehow bc we all do what we have to do. But knowing that the day will pass and before I know it I will be home at the dinner table w the day behind me doesnt make it any easier. The flood of anxiety that consumes me just with the simple thought of walking through those doors is overwhelming. The tears want to overflow right along with the thought itself. Facing people, questions, reliving that moment of diagnosis. Real friends there won't ask or confront. I know that. But it's the uncertainty. Not to mention re-entering a world I haven't even thought of, literally, in months. Any other maternity leave I have touched base for info on my students (even completed the report cards from my home) but this time it is more than different. It is another world I feel so unfamiliar with. A life I used to know and am forced to return to. Insurance just isnt fair when it comes to cancer that is for sure. How am I going to even be half as good as I was? How? I have been proud of myself as a teacher (in the past few yrs), confident in my strategies and implementation. And even more so because of the amazing staff I get to work with. I will need them now more than ever. How to teach? Those are files I haven't opened in my head in so long and I will need someone to push me along the way. I know most would say it is like riding a bike, which I am sure it will be. But I can't help but feel like I will need my training wheels on for awhile. I know it is just another chapter to this journey, but boy does it feel like a heavy one. A heavy chapter to add to our "new normal" life book.
Friday, December 3, 2010
Prayer...
from the youngest souls.
Several weeks ago (I believe it was our first week in the hospital due to that fever G had, so I guess I'm going back to the first week of Nov) while on the phone w Triston he told me he made an angel for Grayson. I told him that was the sweetest thing he could do for him. I assured him Grayson was thinking of him to even though he was in the hospital. I was so touched. How could I rear such a sweet biggest brother?
It gets better!!
The next day Charito asks me if T discussed angels with me the previoius night on the phone. I confirmed. He then proceeded to tell me more. It was not just Triston who made Grayson an angel, but the whole class! Charito described the contents of the wrapped gift to me and I was able to bear my eyes upon it almost a week later.
I was in awe....
Precious, huh?!
Precious, huh?!
Each child made an angel. And each page of the book is a sentence starter-
"__________'s prayer for Grayson is ___________"
The responses range from a superman blanket, Transformer, medicine or dollie to make him feel better. True 4-5 yr old responses.
Have I mentioned how wonderful the staff and classmates are to our situation?! We are blessed! And this is just where the generosity began!
Since then, supposedly, a letter was put together desrcribing our situation and shared among the preschool parents of both T's class and the class next door that they share activities with. We have received an abundance of prayers, support, cards, gift certificates, meals and babysitting offers from so many of his classmates' parents. It is pretty overwhelming to say the least. I had a hard time dealing with all the support from my work staff, much less now we are talking from people I barely know or do not at all. The way people open their hearts, wallets and endless care astounds me. Just when you think there are too many crazies out there, rude people, those who don't stop and smell the roses and are thankful for what they have each day....out from the storm rises clarity-the clarity that THERE ARE angels out there willing to do for others. Now BELIEVE me, this was really hard to for me to accept. All I could think of was how there are people out there suffering much worst than I-no insurance, no job, no home, no car, multiple illnesses plaguing one family at a time or family about to mourn the death of another, you know what I am talking about-you and I think it every so often don't we? The people that "will never be me". I thought about how we DO NOT deserve all of these gifts. OTHERS do. I didn't know what to do. Charito and I are speechless.
I spoke with my listeners-Child Life. They helped me see that there is nothing I can do to stop the overflow of generosity. It is no different than if I had a friend in need and felt that tug to do something and nothing was going to stand in my way. They helped me see it, understand it as a recipient (a position I never thought I would be in). They were right-people are going to do what they WANT to do bc they feel that need to do. To give. And now I am surrounded by people who will only accept my verbal thanks. They will not take money, gifts or anything else in return. Child Life and other parents riding this ride similiar to ours helped me realize that I have to accept that, too. The only thing I can do is Pay It Forward. And I have. To perfect strangers lately. It doesn't hurt, right? It only helps. God would want it that way, I think.
A positive
As "sprung on us" as this phase of chemo was I am happy to say it is halfway over. We have two more hospital stays scheduled during this high dose level of methotrexate--- Interim Maintenance stage.
We are scheduled to go back in Monday, Dec 6th (if numbers are good after clinic we go to admissions office). From the point that chemo bag hung on the IV post to our green light for discharge-we made it in 4 days of elimination through his body. The 5th day was that Monday we were admitted and he was hosed with fluids to prep for the chemo. I hope to say this stay will allow for another 4 day waste elimination but we shall see.
This lazy week at home marks week 17. Lazy because G is neutropenic and we cant take him anywhere. Which means the Lunch w Santa we had planned at T's school tomorrow will just be Triston and Caden and I.
We have been home since last Friday and just hanging out. I got alot done last weekend. Even some midnite shopping with Najette Saturday nite. Spent way too much and now considering returning some items. I get caught between wanting to make this an awesome xmas to make up for, alot of things AND overspending. I want to give it all to the boys. And yet, deep down I KNOW the most important thing is being HERE, altogether. What's a mommy to do?
Monday I was hit w a head cold. I slammed me that evening. Earlier that day I ran some errands while Mamac sat w Grayson and Caden. I need to get as much done as possible while I am home. Those weekdays in the hospital suck up so much of my time and I find myself scrambling when I get home. I never recover. So, I ran around that day hunting down bday favors for Triston's party at school and the boys' bday party later this month. His actual bday lands on Red day at school so I found santa hats with cute lil sayings on them at the dollar store. Easy! I hit up a couple more places (including Jewel to pick up 5 Tribunes bc Grayson was in the paper that day). I had no luck finding 40 + train theme items of any kind in a dollar store so I had to order the big bday party favors from Oriental Trading Co. Luckily I held out til the free shipping and extra coupon day and that was another thing off my checklist.
Thursday - dr aptmts for G n I.
Me-My chest xray was clear. No more fluid in my lungs. Pneumonia is gone. But it left some scarring on my lungs which will heal in time. My ultrasound on my calves also came out negative. No blood clots. We are chalking up all this leg and back and neck and shoulder blade pain to pneumonia recovery for now. If anything persists I will go back after the holidays.
Grayson-we saw Belmonte for a followup from our discharge last week. I always feel better after I see him. He puts it all into perspective. We talked asthma management bc it is up and down w these hospital visits. The nebeulizer has been great! We believe its the steam that is really loosening up that gunk. But the inconsistency of strategies between here and hospital is not helping. He helped us all get on the same page seeing as its residents poking their noses into that aspect while we are there. We are laying off the albuterol. That is supposed to be the "rescue drug" and not used 3 x day if he is not suffering from a full on asthma attach. He gets a coughing fit here n there w the inactivity in the hospital but that is manageable. So now at home we are sticking with the increased amount (110) of Flovent inhaler (protects airways from swelling and irritation) and using saline solution instead of albuterol in the nebuelizer. And from now on he is just going to call me in my room and we talk things over bc the telephone operator game is not working well. I love him!
We also talked about the number of bumps and slight remains of a bruise on the back of his head. Currently, you can tell the back left side of his head is bumpier and raised vs the right side, nice and flat. That initial blow occurred mid October days after the discovery of that respiratory infection. It was the first bruise we had seen since the week of diagnosis. Well, since then he manages to bump his head near or on that same area each and everytime. I know they are typical 2 yr old rambunctious head bumps but I am telling you - this happens at least 3-4 x a week. He falls off the little kid chair, he trips on a train, throws a tantrum and cares less about how often his head bumps the hardwood floors along the way. It makes me a wreck. How do I know hemorrhaging isnt occurring under there? Hematoma?
Belmonte felt his head. He informed me that part of the skull is EXTREMELY thick and is susceptible to cracks in situations like car accidents, falls from 3 story windows, etc. He was not worried. But he was able to describe what it is we are feeling on that peach fuzz head of his. He explained that with that bruise weeks ago blood collected under the scalp and and with the additional fall days after that one more blood. Not tons, but enough to cause a bump and redness that I observed days later. Well, what happpened (and why it looks and feel the way it does today) the blood hardened and calcified. It actually calcified! In that large of an area. There is a calcified mass sitting between Grayson's scalp skin and skull. Wierd. It will eventually go away...in a few years! The reason it bugs us so is bc we have so much bald head to look at these days! The human body really is amazing, isn't it?
The rest of the week lent itself to laundry and prepping for my hospital stay next week. I have to make sure I have:
clean sheets (each overnite babysitter changes the sheets after her stay) for all beds n crib, school clothes, Triston's snacks for next week (we made it easier on ourselves and bought lunch for all of Dec), clean outfits for drooly boy Caden (I swear I have another early teether on my hands) and pack up me and Grayson's hospital bag with clothes, tolietries, snacks and his latest toy craze that I know Areum does not have in the play lab.
I also sorted through some Christmas gifts and started wrapping so I don't have to worry too much about that later. Our last stay should be the week of Christmas. I wonder if we will be home on Xmas day or not?
Oh and Grayson's diet for the week-scrumptious:
bologna for breakfast, raisins, cookies, MILK, broccoli, avocado w ranch dressing, brownies, and popsicles.
Meds:
Bactrim Monday n Tuesday
Mercaptopurine MWF
Nystatin 3x day
No albuterol (until further notice)
Flovent inhaler 2x day
I do have to say that Grayson and I have bumped heads way too many times this week. He has been his typical Jeckyll and Hyde w chemo mood swings on top of it. I have been crabby and he has been to. He has little to no patience (leading to those head bump tantrums) and it seems to dwindle as weeks pass. It's the two yr old junk atop cancer junk. It has been a really tough week in that respect. But , if you had walked into my home any other time you would have seen a 2 yr old playing, jumping, laughing hysterically bc he had many silly moods to him as well. I go from yelling to laughing bc of things like this:
Wednesday, December 1, 2010
Strength
I know I talk of how strong and brave Grayson is, but this one had me laughing. Many weeks ago we were partaking in a typical Friday Family Movie Nite. While doing so Charito knocked off some situps, elastic band strech muscle thingies and that medicine basketball looking thing he has (can you tell I haven't been to a gym since college?). Grayson thought the spectacle was hilarious and before you knew it was attempting to try it on his own. We let it go for a bit for laughs but then he got pretty serious about it and wouldn't drop it til he did it JUST like daddy. So, using the chair for stability (like daddy) we propped towels to protect his back and off he went! Once he tried a couple times he finally told us he was "stuck". He realized he couldn't make it up without assistance. Daddy to the rescue! Everytime I look at that living room chair now, I think of our little exercise break in between takes of How To Train Your Dragon. Who says movie nite on the couch with popcorn n chocolate HAS to be lazy?! Not in our house, apparently.
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