fishing for dolphins (yup, he caught mama a dolphin!)
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!
Showing posts with label hospital stays. Show all posts
Showing posts with label hospital stays. Show all posts
Friday, March 30, 2012
More March hospital stay pics
Tuesday, March 13, 2012
March AGAIN update
PCR came back negative. Cultures inconclusive at this time. Appears to be a virus strain he was hit with. But he is all better. Dont know what counts are yet. Going home today sometime. Still unsure of discharge directions.
But last night was typical cabin fever G when he is feeling better and napped for a long time during the day and becomes so overtired at night. One minute we are bantering over no TV bc he was screaming at me to play a loud game at midnight and the next hes crying to cuddle with him and have a snack. So we cuddled and at goldfish and salad and said "cheers" with our styrofoam cups of cherry pepsi. Then he nestled in my arms and kept telling me that I am 'the best mom I ever have' and how much he loves me. That kid gets me every time!!!
Caden has been busy wreaking havoc on the house. Doing some potty while I was gone which I love. Climbing on the dining room table to get M&Ms. Refusing to stay in his crib unless he absolutely exhausted. Cant wait to see what I come home to!
T is home from school again today. I just wanted one more day for him so that he didnt infect anyone. Hes had no symotoms since Sunday. But he did break my heart a bit last night. He called me near midnight crying. He had a nightmare that I was in a battle of some sort and instead of finishing or after the battle (hard to hear him) I went far away. I assured him that I was so close to him and reminded him of our route to the hospital and how close it is. I told him how wonderful it is we get to do facetime on the phone, share pics and texts and talk. He calmed down. But it was clear the dream portrayed how much he is missing me. I cant wait to see that boy today and give him a tight squeeze lasting up to five minutes or more and hand him a shamrock shake. We have been seeing the "I love you, I hate you" commercial for weeks now and havent indulged yet. I hope we get out of here early enough to get most of the day w my boys before I have to prep for work mode returning tomorrow.
Ugh. I hate this.
But last night was typical cabin fever G when he is feeling better and napped for a long time during the day and becomes so overtired at night. One minute we are bantering over no TV bc he was screaming at me to play a loud game at midnight and the next hes crying to cuddle with him and have a snack. So we cuddled and at goldfish and salad and said "cheers" with our styrofoam cups of cherry pepsi. Then he nestled in my arms and kept telling me that I am 'the best mom I ever have' and how much he loves me. That kid gets me every time!!!
Caden has been busy wreaking havoc on the house. Doing some potty while I was gone which I love. Climbing on the dining room table to get M&Ms. Refusing to stay in his crib unless he absolutely exhausted. Cant wait to see what I come home to!
T is home from school again today. I just wanted one more day for him so that he didnt infect anyone. Hes had no symotoms since Sunday. But he did break my heart a bit last night. He called me near midnight crying. He had a nightmare that I was in a battle of some sort and instead of finishing or after the battle (hard to hear him) I went far away. I assured him that I was so close to him and reminded him of our route to the hospital and how close it is. I told him how wonderful it is we get to do facetime on the phone, share pics and texts and talk. He calmed down. But it was clear the dream portrayed how much he is missing me. I cant wait to see that boy today and give him a tight squeeze lasting up to five minutes or more and hand him a shamrock shake. We have been seeing the "I love you, I hate you" commercial for weeks now and havent indulged yet. I hope we get out of here early enough to get most of the day w my boys before I have to prep for work mode returning tomorrow.
Ugh. I hate this.
Monday, March 12, 2012
March AGAIN
Not much to say and I am not in the best of moods so this will be short and sweet (ok more like crabby):
Previous posts explained how we came home Saturday, March 3 and went back Monday, March 5 for count check and Caden's aptmt (ear infection confirmed) and my aptmt for fear of walking pneumonia (only resp virus, ha! only?!). G still had his gunky cough that day and ANC was dropped to 0. Disappointing.
Tuesday -Friday lunchtime G was great! Cough was practically non-existent and he was in a great mood w all the normal food and waste perimeters going on. Loved it and I was feeling like we were kicking this virus for good but still his ANC didnt match up.
Friday we had to go into clinic for count check to see if that ANC was climbing. I rushed out of work at 1:30, got T early from school, grabbed G n C from home and still made it to clinic in time. From the time I grabbed G and we arrived to clinic he did not seem himself. Total 360 from the checklist of questions I bombard my motherinlaw with when it is my turn to take over after work. He just lied there all limp in clinic. Surprisingly counts were great. ANC 1, 300 and all others up and hanging tight. But his mood concerned even Dr Dell. He worked every angle to get a smile out of that kid. T and C appreciated his efforts more than G did. I explained that this is how he acts right before we are faced w a fever at home. We left w good counts and instructions to keep an eye on him and call w any concerns.
By that evening at 7 pm he had a fever. At 4 am he had a 20 min coughing fit following some concerning breathing patterns while he slept. Saturday his fever peaked at 39.6 and teetered around the whole day. We ordered dinner knowing that in a few hours we would be instructed to bring him in. We called right after dinner so that we could at least enjoy a meal together before we were separated again. I was in the ER w G by 9 pm. He barely ate, drank or left the couch all day. It was inevitable. I was so glad we saw Dell the day before so he could see what his "brewing" behavior looks like.
We did the usuals- PCR, CBC, cultures, tylenol, pump syringe of cefapime and a new one Tamiflu. He presented w flu like symptoms upon arrival so they took that route (shakes, chills, sensitivity to touch). Cefapime is being administered at 2 and 10 pm, and 6 am. Tamiflu every 12 hours. Until we have the culture results and PCR we are treating it as a flu. Ironically hours after we were admitted (around 1 am) daddy texted me to say T woke w chills and a fever. Why not?! I was afraid something wasnt right when I talked to him about why G and I were headed out again. He was understanding as usual but kinda moaning while he lied there. I wasnt sure if he was starting to not feel well or fighting back tears upon my absence. I held back my tears and got into mommy warrior mode to get G to ER. He is home from school today.
G has been fever free since Sunday morning.Mood varies. Eating ok but wish it was better. Drinking poorly but is on fluids at least. We may decrease his fluids soon in order to see if his urine is holding steady on its own. Still dont have labs back so we wait. That will predict if we go home on intravenous antibiotics or what.
in other drama-
Since Wednesday Caden figured out how to climb out of his crib. He is so stealth about it too. We joke and call him ninja. T n G never did this. Makes me a wreck. So now my baby that has put himself to sleep n slept thru the nite at weeks old by simple dumping him in his crib no longer exists. Since then he does not nap unless he is completely exhausted enough to skip the fight. This also means the second nap of the day is being avoided by HIM. It is such a game he has created. We were going to switch him to the big boy bed Saturday but realized we were headed to ER w G so it was not worth trying a new transition w out mommy there to lay the law and testing daddys patience.So we wait til this weekend I guess. Nonetheless since G and I have arrived he is driving them nuts with this new stage. He insists on independence and I love that about him. He has two bros which means twice the motivation to do it all and he has completely hit the fast forward button on me. He also added the ability to indicate his need to pee, set up his seat and go all on his own this past Wed-Saturday. It was his lead and my follow. So much so that he refused to wear a diaper and the only compromise I could come up w (since he is not 100% yet) was a Pullup. The novelty of it won him over. While G and I are here I know for sure none of this progress is presenting itself at home and that is ok. One less thing for Mamac and daddy to worry about. I will pick up where we left off soon enough. Either way it is changes for the good and craziness that we are VERY familiar with. It would have been nice for Caden to wait til spring break or summer so we could get some sleep while adjusting to it all but oh well. Hes got bros to impress I guess!
keep you posted about G later
Previous posts explained how we came home Saturday, March 3 and went back Monday, March 5 for count check and Caden's aptmt (ear infection confirmed) and my aptmt for fear of walking pneumonia (only resp virus, ha! only?!). G still had his gunky cough that day and ANC was dropped to 0. Disappointing.
Tuesday -Friday lunchtime G was great! Cough was practically non-existent and he was in a great mood w all the normal food and waste perimeters going on. Loved it and I was feeling like we were kicking this virus for good but still his ANC didnt match up.
Friday we had to go into clinic for count check to see if that ANC was climbing. I rushed out of work at 1:30, got T early from school, grabbed G n C from home and still made it to clinic in time. From the time I grabbed G and we arrived to clinic he did not seem himself. Total 360 from the checklist of questions I bombard my motherinlaw with when it is my turn to take over after work. He just lied there all limp in clinic. Surprisingly counts were great. ANC 1, 300 and all others up and hanging tight. But his mood concerned even Dr Dell. He worked every angle to get a smile out of that kid. T and C appreciated his efforts more than G did. I explained that this is how he acts right before we are faced w a fever at home. We left w good counts and instructions to keep an eye on him and call w any concerns.
By that evening at 7 pm he had a fever. At 4 am he had a 20 min coughing fit following some concerning breathing patterns while he slept. Saturday his fever peaked at 39.6 and teetered around the whole day. We ordered dinner knowing that in a few hours we would be instructed to bring him in. We called right after dinner so that we could at least enjoy a meal together before we were separated again. I was in the ER w G by 9 pm. He barely ate, drank or left the couch all day. It was inevitable. I was so glad we saw Dell the day before so he could see what his "brewing" behavior looks like.
We did the usuals- PCR, CBC, cultures, tylenol, pump syringe of cefapime and a new one Tamiflu. He presented w flu like symptoms upon arrival so they took that route (shakes, chills, sensitivity to touch). Cefapime is being administered at 2 and 10 pm, and 6 am. Tamiflu every 12 hours. Until we have the culture results and PCR we are treating it as a flu. Ironically hours after we were admitted (around 1 am) daddy texted me to say T woke w chills and a fever. Why not?! I was afraid something wasnt right when I talked to him about why G and I were headed out again. He was understanding as usual but kinda moaning while he lied there. I wasnt sure if he was starting to not feel well or fighting back tears upon my absence. I held back my tears and got into mommy warrior mode to get G to ER. He is home from school today.
G has been fever free since Sunday morning.Mood varies. Eating ok but wish it was better. Drinking poorly but is on fluids at least. We may decrease his fluids soon in order to see if his urine is holding steady on its own. Still dont have labs back so we wait. That will predict if we go home on intravenous antibiotics or what.
in other drama-
Since Wednesday Caden figured out how to climb out of his crib. He is so stealth about it too. We joke and call him ninja. T n G never did this. Makes me a wreck. So now my baby that has put himself to sleep n slept thru the nite at weeks old by simple dumping him in his crib no longer exists. Since then he does not nap unless he is completely exhausted enough to skip the fight. This also means the second nap of the day is being avoided by HIM. It is such a game he has created. We were going to switch him to the big boy bed Saturday but realized we were headed to ER w G so it was not worth trying a new transition w out mommy there to lay the law and testing daddys patience.So we wait til this weekend I guess. Nonetheless since G and I have arrived he is driving them nuts with this new stage. He insists on independence and I love that about him. He has two bros which means twice the motivation to do it all and he has completely hit the fast forward button on me. He also added the ability to indicate his need to pee, set up his seat and go all on his own this past Wed-Saturday. It was his lead and my follow. So much so that he refused to wear a diaper and the only compromise I could come up w (since he is not 100% yet) was a Pullup. The novelty of it won him over. While G and I are here I know for sure none of this progress is presenting itself at home and that is ok. One less thing for Mamac and daddy to worry about. I will pick up where we left off soon enough. Either way it is changes for the good and craziness that we are VERY familiar with. It would have been nice for Caden to wait til spring break or summer so we could get some sleep while adjusting to it all but oh well. Hes got bros to impress I guess!
keep you posted about G later
Friday, March 2, 2012
Day 5 or 6 update
This morning's CBC displayed an ANC of 0.
It literally dropped from .1 to 0
So we looked into another plan. Neupogen. heres what it does:
http://a4.sphotos.ak.fbcdn.net/hphotos-ak-ash4/s320x320/426732_10150592683688757_17877463756_9175455_1485620104_n.jpg
We have not had to use this as an option before but working w absolutely (and literally) 0 infection fighters it was worth a shot.
Depending on how well it works would determine how soon we go home, on or off antibiotics and so forth. More waiting.
When he was about to receive the Neupogen and another dose of cefapime (the antibiotic he has been receiving intravenously every eight hours since Sunday) soon after we ran into a problem. His port was flushing (going in one way, into his body) but not showing a blood return (this is when they pull back on the syringe that is attached to the tube attached to the needle in his port and that force pulls blood out of his body to show that fluid is flowing both ways like a two way street indicating no clogs or blockage). We couldn't understand it bc there was no sign of swelling or redness near the port site and he had blood draws done earlier that day. And when this has happened for a split sec in clinic we just lie him down or reposition his chest to get the blood flowing in the right direction. These tricks werent working this time. He was getting pissed too. He had complained of his port hurting the night before but we checked into that twice with two separate occasions of blood return checks. He was fine. The only thing that explained that complaint was that when we come to the floor they use a different gauge needle to access him. Clinic uses the precise sized needle for his port perimeters. The one on the floor protrudes quite a bit and we have had to come up w solutions to pad it or the needle moves around on his port site. Picture a nail on a chalkboard effect but without the sound. So we are thinking that after almost 6 days of being accessed he is so much more aware of things at this age that he is feeling every little nudge that needle makes and the tegaderm (huge clear sticker that goes over the site to protect from breathing on, germs, liquids, etc)
does start to loosen up. This dressing is def beat up today. You gotta remember, this is the first time we have had a long stay in which within the 24 hours he was back to his old self and then some and we are waiting for his angry blood to catch up to that. This kid is jumping from the couch to the bed, running back and forth, playing hide and seek behind the curtains and so much more.So the dressings are loosening, additional tape is coming undone. We fixed that by adding another tegaderm over that. So I can imagine w all the activity he has he may have jerked the needle to cause some probs. But we had an option before even thinking about removing the current needle and reaccessing him.
Alteplase http://www.drugs.com/cdi/alteplase.html
Never had to resort to this either but it worked. It came in a syringe, nurse pushed it into his tubie and waited 30+ min. Came back and wallah, no more clog. The neupogen was underway and the cefapime followed. Now we wait to see what counts are tomorrow.
I know this sounds like alot and it is. No doubt stressful but minor compared to other things/reasons our fellow cancer patients are here on this floor with us for this week. Some have been through various surgeries, here for more than 3 weeks and still suffering through alot of unknowns this evening. Scary stuff. Gives me perspective for sure. And as always, I appreciate all your prayers, thoughts, jokes, mini drop bys outside the main doors to give me my fix of meds (thank you K, the mucinex is already working!) or a treat for G. We may be in isolation but some of you have found one way or another to help in anyway you can and we appreciate it. I cannot deny someone the opportunity to give or help when I know it heals your heart just as much as mine along the journey. I understand that now. Countless meals, cleaning and laundry assistance, hugs, shared tears, gifts for not only G but his bros and one unforgettable benefit taught me that more than a year ago! We are blessed, I know I say it alot but it is oh so true.
Other ramblings-
I want something nasty and greasy. Portillos is calling my name. Or Mcds. And after that some sushi and some crazy dessert table. Yes, I emotionally eat-- it is yummy therapy.
I NEED a massage and pedicure. I NEED NEED NEED to shave my armpits, gross! I want a really HOT shower. I want my bed, my boys, my man and a sloppy kiss from Bry. I miss the smell of each of them, You know how no matter how old your kids get they each have their own unique smell that you never forget!? I miss driving. I needed an energy boost so bad today I wished I was outside during that pretty rainy snow tonight letting it whip me in the face no matter how bad it may have hurt. It would have felt so nice and cool on my face. When I ran downstairs really quick to pickup my care package from a friend ( the first or second time in a year n half I felt comfy enough to leave him w a random stranger hospital volunteer , but only bc he was napping) I took a step into the gift shop for peek. I saw two necklaces I really liked ( some talented lady must be renting a spot in the store to get her name out there) and I regretted I didnt have my wallet w me. Tomorrow I just may buy them for myself. I love them chunky unique pieces, especially the ones that catch your eye and pull you in bc of the mood or situation you are currently absorbed in. It is like you are acknowledging in that moment that yes through that item "I guess that is how I am feeling, or accepting of this moment". You know those wierd a ha moments right? Or am I just crazy like The Shining right now, psychopath hallucination like cabin fever?! Talk to me people! It is not time for Red Rum is it?!! Peggy help me out here!
I cannot tell you how many times G thinks of G and c and daddy. He sees a commercial for some toy or game and asks me if he can buy it for T. He also adds that c doesnt need anything bc he is still a baby. He ends his rant (after I have tried to convince him to just put it on his list or that it may be too expensive) with a n interception of my excuses with this beauty , "because you know mom, sharing is caring!" Thank you My Little Pony and Strawberry Shortcake episodes. How can I say no to that logic?! If I could drag that kid into a public place on our way home this weekend I would let him buy whatever for himself and his bros. His heart is huge for such a pint.
I miss going through Ts folder and reviewing his schoolwork. The way Caden pats my back like he's calming me, protecting me when I sing our goodnite song. He pats right in rhythm with my words. I miss alot.
But being here alone with G has had so many great moments. This kid continues to amaze me. The alone time has given me the chance to see more of his talents and interests that get muffled in the demands for attention of 3 boys. So often they are each shrieking to be heard and seen that alone time is so limited, especially when all they seem to crave is time together. A vicious circle. His puzzle skills continue to soar. He is locating apps on the ipad for these magic 75 piece puzzles that he zips through. Im talking like classic artpiece scenes from Davinci, complex pics. He is showing me how strong his memory is. Through conversations it is clear he is an abstract thinker. Thinking outside of the box and needing results and if not at least coming up w his own predictions. There are always options to him, not just one answer is enough. He likes things his way that is for sure. Today he had a coughing fit after running around this room that led to his asthma acting up. He coughed up a wad of spit bc he coughed so hard and it landed on his shirt. I didnt have anymore clean shirts in our bag so I told him he could wear one of my tshirts. You could tell he really didnt like the idea. Our nurse offered to place our clothes in the wash to help out his dilemma. He was over the moon. While the wash was being done he napped but low and behold the first thing he mentioned when he woke was if Nurse C had fixed his laundry. He wanted his Thomas shirt on. He is so lucky he has girlfriends here. I had to laugh inside bc T loves wearing my too small tshirts, its a piece of mama to him.
Even through tantrums and his demands for immediate satisfaction he remains kind, polite and compassionate to the core. I love my guy.
Let you all know how tomorrow goes in the am. Im off to bed. Wild boy finally passed out 20 min ago!
It literally dropped from .1 to 0
So we looked into another plan. Neupogen. heres what it does:
http://a4.sphotos.ak.fbcdn.net/hphotos-ak-ash4/s320x320/426732_10150592683688757_17877463756_9175455_1485620104_n.jpg
We have not had to use this as an option before but working w absolutely (and literally) 0 infection fighters it was worth a shot.
Depending on how well it works would determine how soon we go home, on or off antibiotics and so forth. More waiting.
When he was about to receive the Neupogen and another dose of cefapime (the antibiotic he has been receiving intravenously every eight hours since Sunday) soon after we ran into a problem. His port was flushing (going in one way, into his body) but not showing a blood return (this is when they pull back on the syringe that is attached to the tube attached to the needle in his port and that force pulls blood out of his body to show that fluid is flowing both ways like a two way street indicating no clogs or blockage). We couldn't understand it bc there was no sign of swelling or redness near the port site and he had blood draws done earlier that day. And when this has happened for a split sec in clinic we just lie him down or reposition his chest to get the blood flowing in the right direction. These tricks werent working this time. He was getting pissed too. He had complained of his port hurting the night before but we checked into that twice with two separate occasions of blood return checks. He was fine. The only thing that explained that complaint was that when we come to the floor they use a different gauge needle to access him. Clinic uses the precise sized needle for his port perimeters. The one on the floor protrudes quite a bit and we have had to come up w solutions to pad it or the needle moves around on his port site. Picture a nail on a chalkboard effect but without the sound. So we are thinking that after almost 6 days of being accessed he is so much more aware of things at this age that he is feeling every little nudge that needle makes and the tegaderm (huge clear sticker that goes over the site to protect from breathing on, germs, liquids, etc)
does start to loosen up. This dressing is def beat up today. You gotta remember, this is the first time we have had a long stay in which within the 24 hours he was back to his old self and then some and we are waiting for his angry blood to catch up to that. This kid is jumping from the couch to the bed, running back and forth, playing hide and seek behind the curtains and so much more.So the dressings are loosening, additional tape is coming undone. We fixed that by adding another tegaderm over that. So I can imagine w all the activity he has he may have jerked the needle to cause some probs. But we had an option before even thinking about removing the current needle and reaccessing him.
Alteplase http://www.drugs.com/cdi/alteplase.html
Never had to resort to this either but it worked. It came in a syringe, nurse pushed it into his tubie and waited 30+ min. Came back and wallah, no more clog. The neupogen was underway and the cefapime followed. Now we wait to see what counts are tomorrow.
I know this sounds like alot and it is. No doubt stressful but minor compared to other things/reasons our fellow cancer patients are here on this floor with us for this week. Some have been through various surgeries, here for more than 3 weeks and still suffering through alot of unknowns this evening. Scary stuff. Gives me perspective for sure. And as always, I appreciate all your prayers, thoughts, jokes, mini drop bys outside the main doors to give me my fix of meds (thank you K, the mucinex is already working!) or a treat for G. We may be in isolation but some of you have found one way or another to help in anyway you can and we appreciate it. I cannot deny someone the opportunity to give or help when I know it heals your heart just as much as mine along the journey. I understand that now. Countless meals, cleaning and laundry assistance, hugs, shared tears, gifts for not only G but his bros and one unforgettable benefit taught me that more than a year ago! We are blessed, I know I say it alot but it is oh so true.
Other ramblings-
I want something nasty and greasy. Portillos is calling my name. Or Mcds. And after that some sushi and some crazy dessert table. Yes, I emotionally eat-- it is yummy therapy.
I NEED a massage and pedicure. I NEED NEED NEED to shave my armpits, gross! I want a really HOT shower. I want my bed, my boys, my man and a sloppy kiss from Bry. I miss the smell of each of them, You know how no matter how old your kids get they each have their own unique smell that you never forget!? I miss driving. I needed an energy boost so bad today I wished I was outside during that pretty rainy snow tonight letting it whip me in the face no matter how bad it may have hurt. It would have felt so nice and cool on my face. When I ran downstairs really quick to pickup my care package from a friend ( the first or second time in a year n half I felt comfy enough to leave him w a random stranger hospital volunteer , but only bc he was napping) I took a step into the gift shop for peek. I saw two necklaces I really liked ( some talented lady must be renting a spot in the store to get her name out there) and I regretted I didnt have my wallet w me. Tomorrow I just may buy them for myself. I love them chunky unique pieces, especially the ones that catch your eye and pull you in bc of the mood or situation you are currently absorbed in. It is like you are acknowledging in that moment that yes through that item "I guess that is how I am feeling, or accepting of this moment". You know those wierd a ha moments right? Or am I just crazy like The Shining right now, psychopath hallucination like cabin fever?! Talk to me people! It is not time for Red Rum is it?!! Peggy help me out here!
I cannot tell you how many times G thinks of G and c and daddy. He sees a commercial for some toy or game and asks me if he can buy it for T. He also adds that c doesnt need anything bc he is still a baby. He ends his rant (after I have tried to convince him to just put it on his list or that it may be too expensive) with a n interception of my excuses with this beauty , "because you know mom, sharing is caring!" Thank you My Little Pony and Strawberry Shortcake episodes. How can I say no to that logic?! If I could drag that kid into a public place on our way home this weekend I would let him buy whatever for himself and his bros. His heart is huge for such a pint.
I miss going through Ts folder and reviewing his schoolwork. The way Caden pats my back like he's calming me, protecting me when I sing our goodnite song. He pats right in rhythm with my words. I miss alot.
But being here alone with G has had so many great moments. This kid continues to amaze me. The alone time has given me the chance to see more of his talents and interests that get muffled in the demands for attention of 3 boys. So often they are each shrieking to be heard and seen that alone time is so limited, especially when all they seem to crave is time together. A vicious circle. His puzzle skills continue to soar. He is locating apps on the ipad for these magic 75 piece puzzles that he zips through. Im talking like classic artpiece scenes from Davinci, complex pics. He is showing me how strong his memory is. Through conversations it is clear he is an abstract thinker. Thinking outside of the box and needing results and if not at least coming up w his own predictions. There are always options to him, not just one answer is enough. He likes things his way that is for sure. Today he had a coughing fit after running around this room that led to his asthma acting up. He coughed up a wad of spit bc he coughed so hard and it landed on his shirt. I didnt have anymore clean shirts in our bag so I told him he could wear one of my tshirts. You could tell he really didnt like the idea. Our nurse offered to place our clothes in the wash to help out his dilemma. He was over the moon. While the wash was being done he napped but low and behold the first thing he mentioned when he woke was if Nurse C had fixed his laundry. He wanted his Thomas shirt on. He is so lucky he has girlfriends here. I had to laugh inside bc T loves wearing my too small tshirts, its a piece of mama to him.
Even through tantrums and his demands for immediate satisfaction he remains kind, polite and compassionate to the core. I love my guy.
Let you all know how tomorrow goes in the am. Im off to bed. Wild boy finally passed out 20 min ago!
Thursday, March 1, 2012
And...
did I mention that I have had a head cold all this time and yesterday the sudafed stopped working!!!
done ranting (for now!)
done ranting (for now!)
update...blah
Just saw Dr Dell. Maybe we can go home tomorrow w an antibiotic via his port. ANC is still ridiculously low and not climbing yet. He reminded me that it could take a while.
The virus we are dealing with whatever it was, crushed them neutrophils. Now we still have to worry, as always that there isn't something bacterial hiding somewhere. All about precaution and making sure he has some sort of protection or armor to leave here with.
We shall see what tomorrow holds.
Things are fine at home though. Daddy commented today that by last night they finally had a routine down pat. MamaC has been great and stays until C gets home and then rushes off to work the store. She insists on helping and wouldn't want it any other way. But I can't help but worry about her. That woman! She gives and gives for her son and boys. luv her
And we have amazing people taking T to school and bringing him home, toting him to afterschool activities and offering up anything we may need. But really we are doing well. Just hard being apart that's all.
I miss the little things. Ironically the same things I b%&# and complained about, weighing me so heavy into tears most of the past weekend before our admission. Yelling at Caden to get off the furniture with his acrobatics. The way he flutters his eyelashes like a girl. Today T had a field trip and I wasnt there to remind him to stay with his group. Then I received a call that he ran/walked into a wall after lunch and has a cut and bump on his head. Hated hearing that from far away. Hes fine but still.
And then to think that as soon as we do get home I am faced with the overflow of laundry and mommy-needs all around the home. I don't miss it but it will need my attention. But I will most likely be putting that crap off in order to take advantage of long overdue family time. G and I havent seen any of them since Sunday. Charito has a cold and bc of the practically non-existing ANC count he has not been able to visit. For the same reasons I have avoided visitors altogether. It is best for G.
So we wait...some more.
The virus we are dealing with whatever it was, crushed them neutrophils. Now we still have to worry, as always that there isn't something bacterial hiding somewhere. All about precaution and making sure he has some sort of protection or armor to leave here with.
We shall see what tomorrow holds.
Things are fine at home though. Daddy commented today that by last night they finally had a routine down pat. MamaC has been great and stays until C gets home and then rushes off to work the store. She insists on helping and wouldn't want it any other way. But I can't help but worry about her. That woman! She gives and gives for her son and boys. luv her
And we have amazing people taking T to school and bringing him home, toting him to afterschool activities and offering up anything we may need. But really we are doing well. Just hard being apart that's all.
I miss the little things. Ironically the same things I b%&# and complained about, weighing me so heavy into tears most of the past weekend before our admission. Yelling at Caden to get off the furniture with his acrobatics. The way he flutters his eyelashes like a girl. Today T had a field trip and I wasnt there to remind him to stay with his group. Then I received a call that he ran/walked into a wall after lunch and has a cut and bump on his head. Hated hearing that from far away. Hes fine but still.
And then to think that as soon as we do get home I am faced with the overflow of laundry and mommy-needs all around the home. I don't miss it but it will need my attention. But I will most likely be putting that crap off in order to take advantage of long overdue family time. G and I havent seen any of them since Sunday. Charito has a cold and bc of the practically non-existing ANC count he has not been able to visit. For the same reasons I have avoided visitors altogether. It is best for G.
So we wait...some more.
Proof he is kickin' it!
 |
| Reading with Areum ! love the way he locks eyes with her he adores her |
 |
| everything was dipped in Ranch (typical steroid pattern!) |
 |
| Built "my creation" and would not tear it down until Dr Kwon saw it. Stayed like that for two days til it was Kwons turn to see us. They both were proud. |
 |
| The newly created puppet show with his oversized hospital sox |
 |
| going pee |
 |
| more Ranch |
 |
| love that butt, barely any in them undies |
Still here...
But you wouldn't understand why if you saw him!
Cancer is doing its dirty work today and for the past two days! The virus has crushed his immunity build up and his ANC remains at .1
It isn't even creeping up! To a 1 at least?! Ugh
Another example of how cancer runs our life. You should see him! I swear he thinks he's on vacation! Having fun and then all of a sudden the recovery of the virus hits hard and crashes fast and passes out for a long nap. But still he remains fever free and eating and pooping and doing all the great things most of his body feels ready to do. Now if only the rest of his cancer ridden body would cooperate!
Cancer is doing its dirty work today and for the past two days! The virus has crushed his immunity build up and his ANC remains at .1
It isn't even creeping up! To a 1 at least?! Ugh
Another example of how cancer runs our life. You should see him! I swear he thinks he's on vacation! Having fun and then all of a sudden the recovery of the virus hits hard and crashes fast and passes out for a long nap. But still he remains fever free and eating and pooping and doing all the great things most of his body feels ready to do. Now if only the rest of his cancer ridden body would cooperate!
Wednesday, February 29, 2012
Here we are
The past few days I have been happy to hear that two wonderful women became mommas. That their hospital stay is for over the moon, joyous, what kind of life was I living before I held this beautiful baby kinda moments. I love that. I couldn't help but recall my mommy moments with each of my beautiful baby boys and even smell their scent all around me all over again.
But I also couldn't help but realize how very different their hospital stay is from mine at this moment. I, too am with my baby but for very different, unfair, never wish on any mama kinda reasons. Leukemia has me right back here. Our nine month streak is over. It was a wonderful, unbelievable lucky, kick-ass nine months-BELIEVE ME! There was NOT an evening that passed that I did not thank God for keeping us all safe under one roof, together the way it should be.
And yet here I type as his tiny body is swallowed up by that big bed, hooked up to IV fluids, cefapime and a pulse-ox. It has been over 3 days and we are still stuck here. A fever for Grayson is 38 celsius. Early Sundy morning at 3 am (Feb. 26th) we were head on with a 38.4 that easily crept to a 39.2, 39.4, 39.8, and even a 40. By 10:30 pm we were in the ER for a direct admission. I will never forget the pitch in Dr Kwon's voice when he questioned 39 as if to confirm what he was overhearing on the phone. I knew the concern right away.
But G sure didn't. Other than the fever and a varied cough he had no other extreme symptoms the entire day. Which is why we played the fever game with Tylenol before calling it in. He ate well and played hard as if trying his best to fight it off. But we knew something was brewing. Everyone of us has been fighting a cold, taking turns for weeks bc of this damn mild winter. And just on Friday I picked T up from school early bc he clearly was not himself. He sure wasn't. It only took hours before he was feverish and vomiting with a 24 hour stomach bug. When it came time to tell G we needed to go see the birds he looked up at daddy and said 'Sorry, dad but I have to go now. I am gonna go see Dr Kwon,' and he headed off to get his shoes like it was no big deal. I guess routines in my little guy don't change even if he has had nine mos off of "emergency duty". C and I teared up for so many reasons. The here we go again feelings, gonna miss you dearly feelings, endless worry of what the hell we were dealing with especially w no other dramatic symptoms, and the hustle and bustle of logistics that needed to be figured out w babysitting and afterschool shifts and T's art class, etc. I made sure to wake T and tell him where I was headed. His immediate response, 'I know...The U_____ will bring me home from school. Don't worry mom.' I was not sure if I should be proud of him for knowing already or sad that this what he has had to become familiar to. Either way I whispered that he could sleep with daddy and gave him a huge squeeze and hug. I didn't attempt the same with C with fear that I would be leaving daddy to try and get him back to sleep.
C loaded the car and off we went. No joke. G was excited. Talking my ear off about who we might see and what they will need to do once we get there. And his impatience was evident while we waited for transport to take us up. ' Uhhh, What taking me so long?!', he repeated (what taking the person so long). The admissions lady couldn't help but laugh.
Ironically, I wasn't in panic mode on the drive there either. I was calm. We had done this before and we knew what to expect. That feeling was comforting. Let's just get there and figure this sucker out. And boy were things moving fast. Like record time. Within 45 min of our arrival on the floor he was accessed (needle into port), cultures and CBC drawn, PCR (huge swab up his nose for labs-respiratory panel) and cefapime (generic antibiotic thru port) was underway. He also had an chest xray done as soon as things calmed down.
Since then he has received cefapime every 8 hours. We had to wait more than the usual 24 hours for the PCR to come back negative and more than 48 hours (bc there are so many resp patients this season that they are backed up) for the cultures only to find out it read negative for 3 days in a row. In cases like these you almost want a positive PCR bc then you can easily treat the exact type of respiratory infection (it tells you out of hundreds which one it is) and then get that exact needed antibiotic going. But no such luck. So since it is not one of the more popular (more serious) especially since his chest x ray showed an infiltration in the base of his left lung, we have to treat it as a generic resp virus and continue the generic antibiotic. It clearly was already doing its job so no need to snoop around any further for exacts. It is now Wednesday night and Infectious Diseases has not had to get involved. Everyone is pleased he has been fever free since Tuesday morning. He looks and acts fabulous. Eating a great amount of food with no waste issues to speak of other than the initial dehydration when we arrived Sunday night.
But we are not out of the woods yet. He may look "perfect" on the outside but his insides tell a different story. I mean it is cancer after all-why the hell would it be easy! His Hgb stayed steady Sun and Mon but dropped to 7.8 on Tuesday. Today it is 7.4. They like 8 and over. A transfusion would typically be taking place but his complexion, lip coloring, SAT and energy levels are not of concern right now so we are holding off. His WBC is slowly climbing back up and platelets are holding strong. His ANC is a whole nother enemy right now.
We knew he was in jeopardy of catching something with an ANC of only 400 last Monday. But now it sits at a .1 That's right! Not even a whole numeral! We like it bare minimum at a 750 but even that still leaves him open to infection. Me? I love it over 1, 500-2,000-safe enough to take the kid to Target for goodness sakes. It even dropped from a .4 from yesterday.
So we have the virus under control but now we wait for the counts to go up. Once again the cancer is gonna do whatever the hell it wants to do. This was most likely a cold that mutated into a resp virus bc of his low ANC that could no longer fight off the infection. If you have no infection fighters in your corner you are going to get sick! He has been wiped clean of them unfortunately.
But you know me...as much as I like to vent I still point out the brighter side to things. This could have been ALOT worst. I cannot tell you the stories I not only read from random cancer mom blogs and sites but from those moms I am contact with fighting alongside us and there are horrendous things happening to kiddos. Not only are they fighting cancer but some of these "simple" viruses that non-immune compromised kids can shake off with TLC and chicken soup literally strip these kids of functioning organs, brain cells and so much more that I hate to mention. We are very lucky this was a tiny virus and not pneumonia or something more serious. We got here when we needed to and got done what needed to get done. We are past the drama of it all and now just waiting for his blood and body to get back to the way we like it. And it NEEDS to be that way before we step out of here or else we could be walking right into a serious infection right around the corner.
And that is the part that hurts a lot. All these things we are educated on, know to do, make happen. told to do, and watch out for 24-7 bc of cancer. The challenges and kiddie illnesses that should be simple hurdles for him are turned into mountains. He may take it all with mostly smiles but it hurts his loved ones tremendously. Here I am away from my hubby, my Triston and only get pieces of his days through mini conversations, and Caden and his blabber mouth of words and curiosities. Does he even know I am gone? I am not the one putting love notes into T's lunch bag. Is he getting any? Does that bother him? Luckily homework is a breeze for him and he needs no assistance for that but still, I like to watch him whip it out in minutes. I miss that.
But, on my end I am getting tons of time alone with my fighter. Total uninterrupted by other bros time. He has me all to himself and he loves every bit of it. I won't lie, I do too. He is such a clown. He has me peeing my pants in laughter. From the moment we stepped in the room he has told everyone what to do and how to do it his style. So totally aware and not missing a beat. And the things he is more aware of this time around in nine months time. He is a 3 yr old now ya know. The amount of questions and whys are so much more of higher thinking order. And then before someone can come up with their kiddie like answer he is making his own predictions. It blows me away. He knows this world so well it both scares me and makes me beam with pride. He is the easiest patient. I adore every inch of him. I know deep down I needed this time to put some things into perspective. We as a family have been in a horrible rut this winter. We try our best when his counts are good but picture cabin fever to the EXTREME-that is us! Me especially dealing with my own mommy demons. The yank from the mundane was a rude awakening on so many levels. But in a crazy way it was needed I guess. I was meant to be in a bookstore the day before admission buying up the Hunger Games trilogy. I actually read a book that was not cancer related in the past few days. Onto Catching Fire (thank you Jenn ;) for the recomm). I was meant to have a bit of Sat to myself for hair and shopping and self-reflection before the storm. I needed the break from work to collect my thoughts and worry about what was really important instead of deadlines and workloads. I deserved time to take a nap all cuddly next to my big baby. To be reminded of the amazing people that continue to care and do and for us inside and outside of this hospital. Yes, I am blessed to see the luck amidst the inconvenience of this stay. I truly am.
This fact still remains- This life of ours is a lonely one. It is unique and only understood by us it seems. Something you can't ever completely describe to others bc so much pain, emotion and expectation is involved. I mean no offense to those all around us that do and do and do for us without question or request. They are always cherished. And then are those that want to help and are waiting nearby for the green light. Thank you. And then there are those that are silent, nowhere to be found. I can only imagine for two reasons-they do not know how to or they simple choose not to. Let's be honest, We all know someone that in the face of tragedy they skip out. They say the token "If you need anything let me know" but they struggle to pull through. I was once guilty of that and forever am scarred by it. I can understand both. I have been there and fully see that unless you are knee deep in it, experienced something similar or are simply working hard at keeping your own life afloat it is what it is. I do not judge, really. And if you do not believe me then you do not know me and I do not need to save room in my life for you. If and when you are ready I will be waiting. Until then I do not have harsh feelings over it. This life of ours has forced so much simplicity and clarity toward so many related aspects that there is so much that does not require much thought. Simple is better. I have enough drama to allow room for more. No thank you. I have seen all sides of it and to each his own. It is all relative. I get it. It is simple. Life goes on. We all have to go on. That is why we are met with new mornings each dawn. We all do what we have to do for that moment/stage/time/chapter of our life. Do what you have to do and I will too.
But even through the need for family, your immediate family during a time like this, there is a wedge that exists. When his counts are low we see no one. Not even our immediate family members. Weeks pass before I see my brothers, sis in law, niece and nephew. I haven't seen her walk in person yet. They haven't heard Caden's latest vocabulary rants or G's latest clown tricks or T's newest philosophy on life. And don't even get me started on how much I need my parents lately. We miss out on Charito's gatherings with his only bros n sis' aka his cousins. We both miss out on extended family parties. I cannot recall the last time we had lengthy conversations with anyone. There is still two handfuls of people that have never met Caden. Triston gets out more than us all. Lonely about sums it up.
But it is I who will always pray for the day when things will be easier for G (although he makes it look flawless don't he, geesh!) and the rest of us. Less lonely. Is that even possible? I will always be happy for the good fortunes and news that my friends and family members share with me but I would be lying if I didnt share that I do get jealous. Although I am a pro now at counting my blessings little and big each and everyday there are things I wish could come easier for us. Some wishes that would perk things up for us along the way that will never occur. Or that I could feel that same innocent overflow of rejoice that they are gleaming in. They deserve it.. I love them and believe that whole heartedly, really I do. But I would like some of that to come my way now and then too. But please dont confuse this with my always evident awareness that things could be worst for us. A sad as it is true, there is always someone worst off than you. Their struggles are beyond comparison. I wish no one had to be at the drowning point but there it is. Each one of us thankful it isnt us I guess. When I have spoken to those nearing or entering their OT lives (off treatment) it is filled with a new set of fears and bittersweet events. Is the calm ever present? Or is it just a new set of waves to ride until you get the hang of THAT surfboard? The day to day we trudge through has been exhausting and only seems to be draining me even more as time passes. My mission does not change though. I have four boys that need me. I need them just as much. The train tracks we travel will lead to an unbelievable destination some day. I guess we just have a whole lot of dark tunnels to pass through along the way. And this will be behind us with even more to look forward to. The worries will always be there. That will NEVER turn off. Cancer does that to you (one of the many things they don't mention in the "Ta Da you have Cancer" brochures). Any little symptom or oddity that pops up with myself. C or T freaks me out into cancer mode. It just happens. And I am fast learning I am not the only cancer mom experiencing this. The ultimate shock was driven into your heart with one sentence and that fear doesnt subside. Once treatment is over things dont just go back to normal. Things will never be normal again. It will just be a another kind of new normal we will have to adjust to. How many does one family need?! Seriously. I already feel as though leukemia has stolen 15+ yrs off my life, not to mention the countless other cancer-diagnoses and deaths we have had to weather thru the past yr and a half. We will never be the same. And it is true, there is a part of that that IS a change for the better. I fully believe that. But pain is pain. That cannot be erased. But as I have said before. We have taken each day and run with it in the best direction possible and we will continue to do so. It is the only thing we know HOW to do at this point. We don't know what each day holds, but neither do you. That is the point isn't it?
But I also couldn't help but realize how very different their hospital stay is from mine at this moment. I, too am with my baby but for very different, unfair, never wish on any mama kinda reasons. Leukemia has me right back here. Our nine month streak is over. It was a wonderful, unbelievable lucky, kick-ass nine months-BELIEVE ME! There was NOT an evening that passed that I did not thank God for keeping us all safe under one roof, together the way it should be.
And yet here I type as his tiny body is swallowed up by that big bed, hooked up to IV fluids, cefapime and a pulse-ox. It has been over 3 days and we are still stuck here. A fever for Grayson is 38 celsius. Early Sundy morning at 3 am (Feb. 26th) we were head on with a 38.4 that easily crept to a 39.2, 39.4, 39.8, and even a 40. By 10:30 pm we were in the ER for a direct admission. I will never forget the pitch in Dr Kwon's voice when he questioned 39 as if to confirm what he was overhearing on the phone. I knew the concern right away.
But G sure didn't. Other than the fever and a varied cough he had no other extreme symptoms the entire day. Which is why we played the fever game with Tylenol before calling it in. He ate well and played hard as if trying his best to fight it off. But we knew something was brewing. Everyone of us has been fighting a cold, taking turns for weeks bc of this damn mild winter. And just on Friday I picked T up from school early bc he clearly was not himself. He sure wasn't. It only took hours before he was feverish and vomiting with a 24 hour stomach bug. When it came time to tell G we needed to go see the birds he looked up at daddy and said 'Sorry, dad but I have to go now. I am gonna go see Dr Kwon,' and he headed off to get his shoes like it was no big deal. I guess routines in my little guy don't change even if he has had nine mos off of "emergency duty". C and I teared up for so many reasons. The here we go again feelings, gonna miss you dearly feelings, endless worry of what the hell we were dealing with especially w no other dramatic symptoms, and the hustle and bustle of logistics that needed to be figured out w babysitting and afterschool shifts and T's art class, etc. I made sure to wake T and tell him where I was headed. His immediate response, 'I know...The U_____ will bring me home from school. Don't worry mom.' I was not sure if I should be proud of him for knowing already or sad that this what he has had to become familiar to. Either way I whispered that he could sleep with daddy and gave him a huge squeeze and hug. I didn't attempt the same with C with fear that I would be leaving daddy to try and get him back to sleep.
C loaded the car and off we went. No joke. G was excited. Talking my ear off about who we might see and what they will need to do once we get there. And his impatience was evident while we waited for transport to take us up. ' Uhhh, What taking me so long?!', he repeated (what taking the person so long). The admissions lady couldn't help but laugh.
Ironically, I wasn't in panic mode on the drive there either. I was calm. We had done this before and we knew what to expect. That feeling was comforting. Let's just get there and figure this sucker out. And boy were things moving fast. Like record time. Within 45 min of our arrival on the floor he was accessed (needle into port), cultures and CBC drawn, PCR (huge swab up his nose for labs-respiratory panel) and cefapime (generic antibiotic thru port) was underway. He also had an chest xray done as soon as things calmed down.
Since then he has received cefapime every 8 hours. We had to wait more than the usual 24 hours for the PCR to come back negative and more than 48 hours (bc there are so many resp patients this season that they are backed up) for the cultures only to find out it read negative for 3 days in a row. In cases like these you almost want a positive PCR bc then you can easily treat the exact type of respiratory infection (it tells you out of hundreds which one it is) and then get that exact needed antibiotic going. But no such luck. So since it is not one of the more popular (more serious) especially since his chest x ray showed an infiltration in the base of his left lung, we have to treat it as a generic resp virus and continue the generic antibiotic. It clearly was already doing its job so no need to snoop around any further for exacts. It is now Wednesday night and Infectious Diseases has not had to get involved. Everyone is pleased he has been fever free since Tuesday morning. He looks and acts fabulous. Eating a great amount of food with no waste issues to speak of other than the initial dehydration when we arrived Sunday night.
But we are not out of the woods yet. He may look "perfect" on the outside but his insides tell a different story. I mean it is cancer after all-why the hell would it be easy! His Hgb stayed steady Sun and Mon but dropped to 7.8 on Tuesday. Today it is 7.4. They like 8 and over. A transfusion would typically be taking place but his complexion, lip coloring, SAT and energy levels are not of concern right now so we are holding off. His WBC is slowly climbing back up and platelets are holding strong. His ANC is a whole nother enemy right now.
We knew he was in jeopardy of catching something with an ANC of only 400 last Monday. But now it sits at a .1 That's right! Not even a whole numeral! We like it bare minimum at a 750 but even that still leaves him open to infection. Me? I love it over 1, 500-2,000-safe enough to take the kid to Target for goodness sakes. It even dropped from a .4 from yesterday.
So we have the virus under control but now we wait for the counts to go up. Once again the cancer is gonna do whatever the hell it wants to do. This was most likely a cold that mutated into a resp virus bc of his low ANC that could no longer fight off the infection. If you have no infection fighters in your corner you are going to get sick! He has been wiped clean of them unfortunately.
But you know me...as much as I like to vent I still point out the brighter side to things. This could have been ALOT worst. I cannot tell you the stories I not only read from random cancer mom blogs and sites but from those moms I am contact with fighting alongside us and there are horrendous things happening to kiddos. Not only are they fighting cancer but some of these "simple" viruses that non-immune compromised kids can shake off with TLC and chicken soup literally strip these kids of functioning organs, brain cells and so much more that I hate to mention. We are very lucky this was a tiny virus and not pneumonia or something more serious. We got here when we needed to and got done what needed to get done. We are past the drama of it all and now just waiting for his blood and body to get back to the way we like it. And it NEEDS to be that way before we step out of here or else we could be walking right into a serious infection right around the corner.
And that is the part that hurts a lot. All these things we are educated on, know to do, make happen. told to do, and watch out for 24-7 bc of cancer. The challenges and kiddie illnesses that should be simple hurdles for him are turned into mountains. He may take it all with mostly smiles but it hurts his loved ones tremendously. Here I am away from my hubby, my Triston and only get pieces of his days through mini conversations, and Caden and his blabber mouth of words and curiosities. Does he even know I am gone? I am not the one putting love notes into T's lunch bag. Is he getting any? Does that bother him? Luckily homework is a breeze for him and he needs no assistance for that but still, I like to watch him whip it out in minutes. I miss that.
But, on my end I am getting tons of time alone with my fighter. Total uninterrupted by other bros time. He has me all to himself and he loves every bit of it. I won't lie, I do too. He is such a clown. He has me peeing my pants in laughter. From the moment we stepped in the room he has told everyone what to do and how to do it his style. So totally aware and not missing a beat. And the things he is more aware of this time around in nine months time. He is a 3 yr old now ya know. The amount of questions and whys are so much more of higher thinking order. And then before someone can come up with their kiddie like answer he is making his own predictions. It blows me away. He knows this world so well it both scares me and makes me beam with pride. He is the easiest patient. I adore every inch of him. I know deep down I needed this time to put some things into perspective. We as a family have been in a horrible rut this winter. We try our best when his counts are good but picture cabin fever to the EXTREME-that is us! Me especially dealing with my own mommy demons. The yank from the mundane was a rude awakening on so many levels. But in a crazy way it was needed I guess. I was meant to be in a bookstore the day before admission buying up the Hunger Games trilogy. I actually read a book that was not cancer related in the past few days. Onto Catching Fire (thank you Jenn ;) for the recomm). I was meant to have a bit of Sat to myself for hair and shopping and self-reflection before the storm. I needed the break from work to collect my thoughts and worry about what was really important instead of deadlines and workloads. I deserved time to take a nap all cuddly next to my big baby. To be reminded of the amazing people that continue to care and do and for us inside and outside of this hospital. Yes, I am blessed to see the luck amidst the inconvenience of this stay. I truly am.
This fact still remains- This life of ours is a lonely one. It is unique and only understood by us it seems. Something you can't ever completely describe to others bc so much pain, emotion and expectation is involved. I mean no offense to those all around us that do and do and do for us without question or request. They are always cherished. And then are those that want to help and are waiting nearby for the green light. Thank you. And then there are those that are silent, nowhere to be found. I can only imagine for two reasons-they do not know how to or they simple choose not to. Let's be honest, We all know someone that in the face of tragedy they skip out. They say the token "If you need anything let me know" but they struggle to pull through. I was once guilty of that and forever am scarred by it. I can understand both. I have been there and fully see that unless you are knee deep in it, experienced something similar or are simply working hard at keeping your own life afloat it is what it is. I do not judge, really. And if you do not believe me then you do not know me and I do not need to save room in my life for you. If and when you are ready I will be waiting. Until then I do not have harsh feelings over it. This life of ours has forced so much simplicity and clarity toward so many related aspects that there is so much that does not require much thought. Simple is better. I have enough drama to allow room for more. No thank you. I have seen all sides of it and to each his own. It is all relative. I get it. It is simple. Life goes on. We all have to go on. That is why we are met with new mornings each dawn. We all do what we have to do for that moment/stage/time/chapter of our life. Do what you have to do and I will too.
But even through the need for family, your immediate family during a time like this, there is a wedge that exists. When his counts are low we see no one. Not even our immediate family members. Weeks pass before I see my brothers, sis in law, niece and nephew. I haven't seen her walk in person yet. They haven't heard Caden's latest vocabulary rants or G's latest clown tricks or T's newest philosophy on life. And don't even get me started on how much I need my parents lately. We miss out on Charito's gatherings with his only bros n sis' aka his cousins. We both miss out on extended family parties. I cannot recall the last time we had lengthy conversations with anyone. There is still two handfuls of people that have never met Caden. Triston gets out more than us all. Lonely about sums it up.
But it is I who will always pray for the day when things will be easier for G (although he makes it look flawless don't he, geesh!) and the rest of us. Less lonely. Is that even possible? I will always be happy for the good fortunes and news that my friends and family members share with me but I would be lying if I didnt share that I do get jealous. Although I am a pro now at counting my blessings little and big each and everyday there are things I wish could come easier for us. Some wishes that would perk things up for us along the way that will never occur. Or that I could feel that same innocent overflow of rejoice that they are gleaming in. They deserve it.. I love them and believe that whole heartedly, really I do. But I would like some of that to come my way now and then too. But please dont confuse this with my always evident awareness that things could be worst for us. A sad as it is true, there is always someone worst off than you. Their struggles are beyond comparison. I wish no one had to be at the drowning point but there it is. Each one of us thankful it isnt us I guess. When I have spoken to those nearing or entering their OT lives (off treatment) it is filled with a new set of fears and bittersweet events. Is the calm ever present? Or is it just a new set of waves to ride until you get the hang of THAT surfboard? The day to day we trudge through has been exhausting and only seems to be draining me even more as time passes. My mission does not change though. I have four boys that need me. I need them just as much. The train tracks we travel will lead to an unbelievable destination some day. I guess we just have a whole lot of dark tunnels to pass through along the way. And this will be behind us with even more to look forward to. The worries will always be there. That will NEVER turn off. Cancer does that to you (one of the many things they don't mention in the "Ta Da you have Cancer" brochures). Any little symptom or oddity that pops up with myself. C or T freaks me out into cancer mode. It just happens. And I am fast learning I am not the only cancer mom experiencing this. The ultimate shock was driven into your heart with one sentence and that fear doesnt subside. Once treatment is over things dont just go back to normal. Things will never be normal again. It will just be a another kind of new normal we will have to adjust to. How many does one family need?! Seriously. I already feel as though leukemia has stolen 15+ yrs off my life, not to mention the countless other cancer-diagnoses and deaths we have had to weather thru the past yr and a half. We will never be the same. And it is true, there is a part of that that IS a change for the better. I fully believe that. But pain is pain. That cannot be erased. But as I have said before. We have taken each day and run with it in the best direction possible and we will continue to do so. It is the only thing we know HOW to do at this point. We don't know what each day holds, but neither do you. That is the point isn't it?
Wednesday, November 23, 2011
November
WOW...been a while since I wrote huh?
Here is how I will rememeber November 2011 :
And I am grateful (knock on wood NOW) we are not spending Thanksgiving in the hospital like last year:
And as difficult as it was to be there on a second holiday in a row last year (first being Halloween) I will never forget the enormous hearts-of-giving from friends and family that provided us with yummy home-made food. WE are SO loved! I can still recall finally getting a chance to eat once G fell asleep and rounds slowed down. It was near midnight. I played some Dexter, shoveled down some food, looked over at G and shed some tears. We were halfway through high-doses of methotrexate and several more weeks of stays ahead of us and I wasn't so sure how I was gonna make it through the end of the year. That was a dark time for me. A very lonely time.
But we are in a different place now. The road is still rough but somewhat more manageable. It has a unique undertone about it. It's own feelings of content and fear. I don't quite have a comfortable grip on it yet. But just watching G kiss days and nights goodbye as each passes us makes it a little more possible. There's a little more normal to take advantage of (with those creeping unknowns and worries around the corner). We will happily take every little chunk we get.
So, thank you. Thank you for you. For reading along all this time and keeping us in your thoughts and prayers. I wish you a blessed Thanksgiving weekend with those who mean or meant the most to you. Each one deserves a place in your heart this weekend (as always). And if I am forgetting any other important events of the month-my apologies.
Addition afterthought:
And as much as it is due to medical technology that we continue to hear more news of cancer and other irreversible illnesses I am still grateful for it. Without it many of these cancers would not have been caught early enough, particularly Grayson's and for that I am forever grateful. Thank you to the nerds out there who took leaps to discover such uglies in our world and battle science day in and day out to find cures. My hope is that one of those phenomenal nerds discovers a cure someday. And how could I forget the more than amazing people that care for our medical needs these days. As rough as it was to be in the hospital last yr for this holiday they still found a way to make it special for us (as they do everyday, holiday or not). It was memorable in its own unique manner. The doctors, nurses, child life specialists and other support members ARE our family. We are truly blessed to have them in our lives guiding us, laughing and crying with us and holding our hands every step of the way. I hope every fighter is lucky enough to have such a comparable team on their side.
Post-Thanksgiving:
It was great! Brunch with Mimi, Neal, Mike, Ayden and Charley. Tons of playtime for the boys. A quick visit to see my gram at the rehab center. Good news from her-it is only stage 1 and yesterday she looked great. She looked too cute with her own set of all too familiar steroid cheeks. She was thrilled to see me ( I left the kids in the car bc them places are like petrie dishes!) and her box of danishes. Then we went home for a long family nap while the wondrous oven (thanks to delayed start and timed cooking) did the turkey work for me. By the time we woke I threw together some side and my filipino family joined us for a sit down dinner. Triston said grace, Grayson pretended to and Caden dove into the pancit before we could say Amen. By 7 pm it was just us 5 again, peering thru ads, watching movies and relaxing. A thanksgiving to remember.
Here is how I will rememeber November 2011 :
- busy busy work work (it did not slow down by any means and in fact it feels like it got even more complex as I wrap up a day that did not go as planned. As much as I LOVE my team this year I STILL hate the fact I have to work. Mama needs her babies and it has been really hard being unable to attend any class events at T's school this so far)
- a month of off and on worries for Grayson. Even though by the beginning of the month he was back to 100% levels of meds and counts remained well through the month of October we still had to slowly creep back up to 100%. That meant weekly visits all of October to check counts and bump him up by 1/4s. But through all of that his counts held up great. The worries came with the crap any of us were bringing home. Triston had a stomach virus this month. Caden got a tad of it. G had a few loose stools but nothing causing a phone call. As on edge as we were all month waiting for something hospital-worthy we were grateful (and surprised) it didn't happen. I know it may sound like we were being pessimistic but it's kinda hard not when you are approaching yet another holiday you can only recall as hospital-spent last year. We were undoubtedly nervous it would happen again. Even Triston began to question what was going to happen this Thanksgiving. Almost every week of November there would be one or two days in which G seemed a little off before I left for work, didn't eat much while I was gone but then would perk up near dinner time. Dips in counts? Drops in energy? Mind games? Regardless, anything other than his usual, busy, active, crazy attitude self put us into worry mode. Made any work day senseless. But either way that became our pattern. A day or two here and there with the rest being fantastic. A day or two here or there with us wondering if the wee hours of the night meant a fever or ER visit. We felt on edge all month. So many notes of conjuctivitis, viruses, pneumonias and who knows what else from T's and my own school. Sick (aka medical mask-wearing) season has begun! Tis our life.
- Triston had his first K report card. He did phenomenal. The only areas of concern were typical K boy stuff-reminders to pay attention (instead of socializing) and keep the socializing and sillies in check. Sound familiar fellow moms of K boys? Otherwise we continue to be more than pleased with his academics. He is reading near a 3rd grade level and his math and writing skills are really flying. His journals and interests in writing and drawing really impress me. I love it. I am so proud of my guy.
- Caden has spent most of the month teething his way through 4 molars all at once. My first boy to put up with them chompers like that. My little guy who has slept through the night since he was weeks old has made for a miserable sleep pattern this month. I have been running on empty. They all cut early this week and now he is fighting the post teeth cold with congestion interrupting his evenings. I finally got smart the other night (after I almost cried myself to sleep with frustration) and put vaporub on his chest and feet. Wallah! Stupid me for not thinking of it a week ago!
- The 3 boys have really bonded even more so this month. Probably a good thing with cabin fever approaching fast. I brought home a gigantic shipping box from work two weeks ago and they continue to have a blast with it. Oh the things they have imagined! Watching Caden and Grayson depend on each for laughs and silly routines is priceless.
- My parents visited for a few days. We were able to spend one day with them and it never seems to be enough (but I will take what I can get). The boys had a blast of course. We had a mini thanksgiving (yummy beef sandwiches), laughs, football and more goodbyes. It always hurts.
- We finally fit in a thank you brunch for our faithful friends and committe members from our benefit back in April. It was long time coming. It was beyond wonderful to have us all under one roof. THEY make me so happy and warm and fuzzy inside. And of course a get-together like that always includes some tears. A mixed emotions kinda meal!
- And lastly, at any point in the future when I recall this month this is what will immediately come to my mind-cancer and more of it. Two weeks ago my grandma was diagnosed with lung cancer. A week ago my husband's second mom (Lula/Tita Mel) was diagnosed with breast cancer. I had to literally sit down and tell the love of my life that both of his moms will be fighting cancer side by side. That makes 9 family/ friends in 15 mos. Who in hell would believe that?! You can imagine the mood around this house lately. It is way too easy to feel defeated.
And I am grateful (knock on wood NOW) we are not spending Thanksgiving in the hospital like last year:
But we are in a different place now. The road is still rough but somewhat more manageable. It has a unique undertone about it. It's own feelings of content and fear. I don't quite have a comfortable grip on it yet. But just watching G kiss days and nights goodbye as each passes us makes it a little more possible. There's a little more normal to take advantage of (with those creeping unknowns and worries around the corner). We will happily take every little chunk we get.
So, thank you. Thank you for you. For reading along all this time and keeping us in your thoughts and prayers. I wish you a blessed Thanksgiving weekend with those who mean or meant the most to you. Each one deserves a place in your heart this weekend (as always). And if I am forgetting any other important events of the month-my apologies.
Addition afterthought:
And as much as it is due to medical technology that we continue to hear more news of cancer and other irreversible illnesses I am still grateful for it. Without it many of these cancers would not have been caught early enough, particularly Grayson's and for that I am forever grateful. Thank you to the nerds out there who took leaps to discover such uglies in our world and battle science day in and day out to find cures. My hope is that one of those phenomenal nerds discovers a cure someday. And how could I forget the more than amazing people that care for our medical needs these days. As rough as it was to be in the hospital last yr for this holiday they still found a way to make it special for us (as they do everyday, holiday or not). It was memorable in its own unique manner. The doctors, nurses, child life specialists and other support members ARE our family. We are truly blessed to have them in our lives guiding us, laughing and crying with us and holding our hands every step of the way. I hope every fighter is lucky enough to have such a comparable team on their side.
Post-Thanksgiving:
It was great! Brunch with Mimi, Neal, Mike, Ayden and Charley. Tons of playtime for the boys. A quick visit to see my gram at the rehab center. Good news from her-it is only stage 1 and yesterday she looked great. She looked too cute with her own set of all too familiar steroid cheeks. She was thrilled to see me ( I left the kids in the car bc them places are like petrie dishes!) and her box of danishes. Then we went home for a long family nap while the wondrous oven (thanks to delayed start and timed cooking) did the turkey work for me. By the time we woke I threw together some side and my filipino family joined us for a sit down dinner. Triston said grace, Grayson pretended to and Caden dove into the pancit before we could say Amen. By 7 pm it was just us 5 again, peering thru ads, watching movies and relaxing. A thanksgiving to remember.
Sunday, June 12, 2011
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