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 March 2012. Show all posts
Showing posts with label March 2012. Show all posts
Friday, March 30, 2012
More March hospital stay pics
Loosening the cancer leash
A few days ago Grayson had his first playdate AWAY from home! This picture says it all. That pretty little girl is M and she is the sweetest, most well-behaved little girl. Grayson sees her often when we pick up Triston from school. She is the sib of one of Ts classmates. After a few discussions over a yr ago with M's parents we realized T and M's bro were in the same baby classes at Gymboree at 1 yrs old. Small world. I knew they looked familiar when we first entered prek. Go to find out we have tons in common and they are absolutely the best family to get to know. You know the type of fellow mom you don't have to think of things to talk about bc the conversations just flow right into each other? That is the kind of friend I have in Ms mom. And to boot-M and G will be in the same class next year! G adores her and asks me everyday if he can go back to her house. And from what I hear the feeling is mutual.
Leaving him at their home was not as hard as I thought it would be.It was actually a bit surreal. But with baby steps we are slowly preparing ourselves for our "fragile one" to be apart from us for school in the fall. I completely trust Ms mom. She is as detail-oriented, worry wart and watchful as I am and she gets me and Gs needs. She kept me up to date w texts while Caden and I had our own alone time. I couldnt have asked for a better situation!
There are so many more play dates in their future! How lucky is G?!
And while G and M played Caden and I spent some time together.
I fixed myself up with some Starbux and grocery shopped in slow motion. Not my typical run in and out pace that I have become so used to these days. I shopped like the days when it was just baby Triston in the cart. Pointing out all the learning opportunities a grocery store has to offer. Caden does not get much of this and I loved that we could take advantage of it. By the way, I have such a sweet obervant boy!
It was a wonderful day! Thank you, Ms mom! Especially for putting me at ease!
Wishes
I won't lie. I have been in a nasty funk for a while now. March's hospital visits did not help one bit!
It's just that in so many ways I see other people's lives moving forward in positive and exciting directions ( and I am very happy for them bc they SO deserve it) and we feel stagnant all too often. My usual disclaimer hasnt changed....I still cherish every moment I have w my boys and I know there are families suffering harsher paths than us but some days (or months) are harder than others for me. To each his own.
I have 3 big wishes:
1. A cure for cancer. Not much to ask in my opinion!
2. To be a stay at home mom one day. This IS the best thing I am good at. And as the years pass by I dislike my job more and more. The many hats I wear is wearing me down. Some days that Superwoman feeling doesn't even hit surface and I am just angry at the world for all that I had to accomplish in one day. Other days I amaze even myself. Ironic, huh, how there are moms out there who would give anything to work instead of being home?! We all have our niche. But in the big picture I do know that my job is a means to end as C says.We wouldn't have what we do or be able to enroll the kids in the "extras" without my job. AND thanks to number one I NEED to work for the insurance to get us through the countless years of cancer maintenance ahead. The other need to work leads to number 3!
3. A bigger home. A home that signifies a new chapter, new beginning in our life. Putting the rollercoaster past behind us. A cause for excitement for the kids as well as C and I. A play room for the kids, my own creation studio, space to be all around and not on top of each other. Again, I know there are people who JUST want a home instead of a condo or apt. We all have our wish lists dont we?
But until then I finally had the time to do some sprucing up to improve my mood of our current home (thank you Spring Break!). Not to mention a few crafts the for the kids and I. Who doesnt love Michaels craft store!
Whenever I see a home I like on the exterior I picture that episode from Jon and Kate plus 8 where they moved into that overly expansive home and the first time the kids see it they run around like with excitement like its an amusement park. I want that overflowing feeling for my kids and even C and I. That, this is gonna be great, feeling. One day.
Until then....spring break allowed me to accomplish a few things. Crazy how I was a true beast the week leading up to it. I know I yelled from the time we got home from school and the time they went to bed. I just couldnt control my stress. I took it out on the wrong people. I was feeling so deflated that week.
But WOW what a break will do. Saturday the first day of break I spent cleaning all day. I finally got around to hiring a cleaning lady to help me out. She tackled the ugly stuff while I dusted and organized. 12 hours later the house was cleaner than it has been in 3 mos. By Sunday morning I started it out right.Yoga, crafts and lists of things I have been meaning to get to. By Monday I had already accomplished so much! The rest of my days so far have been play dates and snuggles.
But I made the time to spruce up the home we do have and enjoy myself in the little things.
This wall project has been in my head for over two yrs when my mom bought me the overpriced wall paper at a steal (gotta love target employee discounts).
BEFORE:
This has been above our bed since we moved in.
I took the wallpaper and covered blank canvases. These are so cheap from Michaels and love how versatile they are. I have even given the kids blank ones to use as free expression and produce our own gallery art pieces. Luv it.
Then I found this rub-on quote months ago and fell in love.
Real Love Stories never have endings.
I stood in the middle of the aisle reading it and almost cried. At a time when things were once again stressful I was reminded of the center of my calm. My hubby. Our love brought us here and will keep us here, going at it as long as God intends. And for me that is forever.
The blue canvases looked better against my green walls anyway!
I placed the hot glue gun on each egg and they put them on the wreath. The flowery garden didnt seem to be enuf for me so I added lilac ribbon. They love that they helped and it really pops on the doorway!
It's just that in so many ways I see other people's lives moving forward in positive and exciting directions ( and I am very happy for them bc they SO deserve it) and we feel stagnant all too often. My usual disclaimer hasnt changed....I still cherish every moment I have w my boys and I know there are families suffering harsher paths than us but some days (or months) are harder than others for me. To each his own.
I have 3 big wishes:
1. A cure for cancer. Not much to ask in my opinion!
- Childhood cancer is the number one disease killer in children.
- There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
- The National Cancer Institute's (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
- The American Cancer spends less than 70 cents of each 100 dollars raised on childhood cancer.
- Cancer kills more children than any other disease, more than Asthma, Cystic Fibrosis, Diabetes and Pediatric AIDS combined.
- Sadly, over 2,300 children with cancer die each year.
- Every school day 46 children are diagnosed.
- 1 in 330 children will have the disease by age 20.
- Cancers in very young children are highly aggressive and behave unlike malignant diseases at other times in life.
2. To be a stay at home mom one day. This IS the best thing I am good at. And as the years pass by I dislike my job more and more. The many hats I wear is wearing me down. Some days that Superwoman feeling doesn't even hit surface and I am just angry at the world for all that I had to accomplish in one day. Other days I amaze even myself. Ironic, huh, how there are moms out there who would give anything to work instead of being home?! We all have our niche. But in the big picture I do know that my job is a means to end as C says.We wouldn't have what we do or be able to enroll the kids in the "extras" without my job. AND thanks to number one I NEED to work for the insurance to get us through the countless years of cancer maintenance ahead. The other need to work leads to number 3!
3. A bigger home. A home that signifies a new chapter, new beginning in our life. Putting the rollercoaster past behind us. A cause for excitement for the kids as well as C and I. A play room for the kids, my own creation studio, space to be all around and not on top of each other. Again, I know there are people who JUST want a home instead of a condo or apt. We all have our wish lists dont we?
But until then I finally had the time to do some sprucing up to improve my mood of our current home (thank you Spring Break!). Not to mention a few crafts the for the kids and I. Who doesnt love Michaels craft store!
Whenever I see a home I like on the exterior I picture that episode from Jon and Kate plus 8 where they moved into that overly expansive home and the first time the kids see it they run around like with excitement like its an amusement park. I want that overflowing feeling for my kids and even C and I. That, this is gonna be great, feeling. One day.
Until then....spring break allowed me to accomplish a few things. Crazy how I was a true beast the week leading up to it. I know I yelled from the time we got home from school and the time they went to bed. I just couldnt control my stress. I took it out on the wrong people. I was feeling so deflated that week.
But WOW what a break will do. Saturday the first day of break I spent cleaning all day. I finally got around to hiring a cleaning lady to help me out. She tackled the ugly stuff while I dusted and organized. 12 hours later the house was cleaner than it has been in 3 mos. By Sunday morning I started it out right.Yoga, crafts and lists of things I have been meaning to get to. By Monday I had already accomplished so much! The rest of my days so far have been play dates and snuggles.
But I made the time to spruce up the home we do have and enjoy myself in the little things.
This wall project has been in my head for over two yrs when my mom bought me the overpriced wall paper at a steal (gotta love target employee discounts).
BEFORE:
I took the wallpaper and covered blank canvases. These are so cheap from Michaels and love how versatile they are. I have even given the kids blank ones to use as free expression and produce our own gallery art pieces. Luv it.
Then I found this rub-on quote months ago and fell in love.
Real Love Stories never have endings.
I stood in the middle of the aisle reading it and almost cried. At a time when things were once again stressful I was reminded of the center of my calm. My hubby. Our love brought us here and will keep us here, going at it as long as God intends. And for me that is forever.
My little helper
But when the blue wallpapered canvases faded into the wall I needed another plan. Once again the center came to my mind-our love brought us our kiddos. Who doesnt like going to bed with a reminder of those beautiful faces created by only you?!
The 3 kids got into some of the art using their fingerprints to create cherry blossom trees. Triston wanted to add Japanese characters to it so he looked up the meaning for peace and future and drew them on.
Then we snuck in one more craft for the kids. I have been wanting a seasonal wreath for awhile now and finally did it.
Truffala tree
Rainbow art ( G called it his rollercoaster of rainbows)
The rest of my break I intend to do some more blogging, relax, shop, yoga, spa day, hair day, some time with family and be a better mom in a better mood. I will eventually get to the homework in my work bag....
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
Wednesday, March 7, 2012
March ramblings
As I loaded G into the car, the sleet pelting me in the face, I actually didn't mind it. Yes, I was eager to get home but I didn't mind the pain. It was a rude wake up call to the outside world I hadn't seen or felt in 6 whole days. And yet it was more than that. It was both refreshing and torturous at the same time. I felt like it was some device whipping questions left and right inside my brain. Then piercing my heart every few seconds. With one breathe it reminded me that we made it through the hospital stay in one piece.He was amazing as usual and made me proud. The other teasing me with words like "you think you can survive this all don't you? He will but you won't. Don't you know that. You are damaged beyond repair".
No doubt I was feeling crippled, exhausted and running on empty once again. This journey is so grueling. On my heart, my relationships, my marriage, my parenting skills and my existence. Most of the time I am positive and whip the negative thoughts to the other side of the universe never to be seen or heard of again, but in this moment I was drowning. Such mixed feelings about how to move on each day or every few weeks when each time we pick up the pieces and things look like they are turning the lonely corner something comes up. A death, a family member in the hospital, losing a job, a new diagnosis, low ANC or someone is sick again. The good outings (Jewel, Target, car show) come in spurts literally weeks apart from each other. Cabin fever and bad moods dont mix well and it is getting old really fast. No one is happy for too long and that mind set affects all of us. It is even getting difficult to remember when we were ALL healthy AND happy all at the SAME time. And even when we do get through all this and say goodbye to his last day of treatment will I be so beat down at that point that I won't know how to move past it all? How much of me will I be scraping up to just celebrate the fight and plow through the new chapter of OT (off treatment) and the fears and challenges that come with that. You know research has confirmed that the parents of fatally ill children suffer from post-traumatic stress disorder ? Well , duh!!!!! Ya think! Moms in general never turn off their worry brains no matter how old their children are. What do you think happens to a parent of child that survived the unfathomable and is expected to proceed with a "normal" life when nothing has been "normal" for years? Its not like a switch you just turn on and off. I know it may seem like alot of "stop worrying about the future " kinda stuff I am spouting out but seriously sometimes I have to just give a hint of worry to the beyond instead of the day to day, especially when the day to day hasn t been so pleasant lately. Some days we have to give into the tears.
And then you have the times when Grayson looks and acts perfectly "fine" and yet his blood says something else. ZERO ANC seriously?!!!! We have never been that low for this long. It is TOO scary to be on hold for any and all chemo drugs for two whole weeks. Ironic huh? As much as you hate the poisons entering his tiny body on a daily basis, ready to dive their nasty side effect teeth into his neurological system any day now, you begin to thrive on them, depend on them to keep him cancer-cell (blasts) free. The last thing we want is to give them bastards a break and think they can start reproducing all over again without us knowing. I don't know how I would handle a relapse at this point. I am ever TOO eager for his next spinal (lumbar puncture) to be sure they are not floating around his spinal fluid making their return. They better read the DO NOT ENTER sign on the door or I will lose it!
But through the muck there is always something funny on the surface to flip the table over and hard. And, as I have commented before re Caden's guardian like, lighten the mood aura that is all he is, it is once again Caden who is guilty of projecting the smiles onto us. He, too, will not let me take a break. He knows how to keep it real and light-hearted. That precious, wild, curious boy of mine. Too much in a hurry to grow up. Doesnt he understand I already feel like I miss the first 6 mos of his life to begin with?! It is like he reassuring me that there will NOT be anything to miss this time around. He always seems to keep things interesting. My little Rice has gone pee in the toilet 5 times since December. The past two times have been in the past two days. I have been allowing him to go and do whatever whenever he wants bc he is merely copying the bros but the past two incidents have been purposeful. He calls to me, claims 'pee, pee' from the stairs but I guess I am not quick enough and up he goes. I get up there to see him doing his usual routine of lifting the seat , placing his potty seat cushion on top of the seat and then it's up to me to get him up there. The recent occurrences he is literally dancing a jig to get on there. In the past if he accidentally peed while performing his copy my bros routine I gave him a mini M&M as a treat. As he peed the past two days his eyes were on that prize waiting for his fav chocolate. He is too damn cute on that ugly throne I tell you. Too tiny to be sitting up there on his own. And today he was so excited he would try, come up dry, wipe and flush anyway, walk away naked, say something to T, and run on back to me for another try. By the third round he went pee and just smiled. And the way he looked at the boys instead of me with pride was priceless.I love that kid. So he left me no choice but to bring the Toy Story potty seat into the living room in case he is super serious about this. I need some option that makes this easier on MamaC. We will see. But boy does he know how to shake things up. No more diapers was my goal for spring break (not like we got anywhere to go) and here he is pushing it up a few weeks. Yikes.
Oh and did I forget to mention that MamaC found him outside of his crib when he woke from his nap today. She heard him 'reading to himself' and when she went up there, there he was on the floor playing all content, injury free. Seriously! Another goal I was hoping to save til spring break or summer. Now we are not sure if this is something he will attempt again and thank goodness the bottom half of his dutch door was closed or she would have found him standing next to her while she was doing the dishes! I am not willing to wait too long for an injury that is for sure. A broken bone is not on my list of things to care for in the next few days. We never met this stage with T and G. T was more than ready at 18 mos for a big boy bed and G transitioned at 20 mos. We avoided those climbing/falls all before they even occurred bc I was so scared. So guess what we are doing this weekend? Like I said, was hoping to save this transition for a time when I didnt have work to get up to in the am bc we all know that as exciting as the new bed may be most of the important people in the house dont sleep too well that first week of the transition. My boy who has been getting dumped awake and putting himself to sleep since a few weeks old is not going to be so kind this go around. It just wouldnt be natural. Yes, it is all exciting and I love that we are following his lead but the time isnt exactly convenient. But when it comes to developmental milestones I am a firm believer in following my kiddos' and thier intentions and I have never been disappointed. We shall see! All I know is that sleep is overrated! (and so is sanity!)
No doubt I was feeling crippled, exhausted and running on empty once again. This journey is so grueling. On my heart, my relationships, my marriage, my parenting skills and my existence. Most of the time I am positive and whip the negative thoughts to the other side of the universe never to be seen or heard of again, but in this moment I was drowning. Such mixed feelings about how to move on each day or every few weeks when each time we pick up the pieces and things look like they are turning the lonely corner something comes up. A death, a family member in the hospital, losing a job, a new diagnosis, low ANC or someone is sick again. The good outings (Jewel, Target, car show) come in spurts literally weeks apart from each other. Cabin fever and bad moods dont mix well and it is getting old really fast. No one is happy for too long and that mind set affects all of us. It is even getting difficult to remember when we were ALL healthy AND happy all at the SAME time. And even when we do get through all this and say goodbye to his last day of treatment will I be so beat down at that point that I won't know how to move past it all? How much of me will I be scraping up to just celebrate the fight and plow through the new chapter of OT (off treatment) and the fears and challenges that come with that. You know research has confirmed that the parents of fatally ill children suffer from post-traumatic stress disorder ? Well , duh!!!!! Ya think! Moms in general never turn off their worry brains no matter how old their children are. What do you think happens to a parent of child that survived the unfathomable and is expected to proceed with a "normal" life when nothing has been "normal" for years? Its not like a switch you just turn on and off. I know it may seem like alot of "stop worrying about the future " kinda stuff I am spouting out but seriously sometimes I have to just give a hint of worry to the beyond instead of the day to day, especially when the day to day hasn t been so pleasant lately. Some days we have to give into the tears.
And then you have the times when Grayson looks and acts perfectly "fine" and yet his blood says something else. ZERO ANC seriously?!!!! We have never been that low for this long. It is TOO scary to be on hold for any and all chemo drugs for two whole weeks. Ironic huh? As much as you hate the poisons entering his tiny body on a daily basis, ready to dive their nasty side effect teeth into his neurological system any day now, you begin to thrive on them, depend on them to keep him cancer-cell (blasts) free. The last thing we want is to give them bastards a break and think they can start reproducing all over again without us knowing. I don't know how I would handle a relapse at this point. I am ever TOO eager for his next spinal (lumbar puncture) to be sure they are not floating around his spinal fluid making their return. They better read the DO NOT ENTER sign on the door or I will lose it!
But through the muck there is always something funny on the surface to flip the table over and hard. And, as I have commented before re Caden's guardian like, lighten the mood aura that is all he is, it is once again Caden who is guilty of projecting the smiles onto us. He, too, will not let me take a break. He knows how to keep it real and light-hearted. That precious, wild, curious boy of mine. Too much in a hurry to grow up. Doesnt he understand I already feel like I miss the first 6 mos of his life to begin with?! It is like he reassuring me that there will NOT be anything to miss this time around. He always seems to keep things interesting. My little Rice has gone pee in the toilet 5 times since December. The past two times have been in the past two days. I have been allowing him to go and do whatever whenever he wants bc he is merely copying the bros but the past two incidents have been purposeful. He calls to me, claims 'pee, pee' from the stairs but I guess I am not quick enough and up he goes. I get up there to see him doing his usual routine of lifting the seat , placing his potty seat cushion on top of the seat and then it's up to me to get him up there. The recent occurrences he is literally dancing a jig to get on there. In the past if he accidentally peed while performing his copy my bros routine I gave him a mini M&M as a treat. As he peed the past two days his eyes were on that prize waiting for his fav chocolate. He is too damn cute on that ugly throne I tell you. Too tiny to be sitting up there on his own. And today he was so excited he would try, come up dry, wipe and flush anyway, walk away naked, say something to T, and run on back to me for another try. By the third round he went pee and just smiled. And the way he looked at the boys instead of me with pride was priceless.I love that kid. So he left me no choice but to bring the Toy Story potty seat into the living room in case he is super serious about this. I need some option that makes this easier on MamaC. We will see. But boy does he know how to shake things up. No more diapers was my goal for spring break (not like we got anywhere to go) and here he is pushing it up a few weeks. Yikes.
Oh and did I forget to mention that MamaC found him outside of his crib when he woke from his nap today. She heard him 'reading to himself' and when she went up there, there he was on the floor playing all content, injury free. Seriously! Another goal I was hoping to save til spring break or summer. Now we are not sure if this is something he will attempt again and thank goodness the bottom half of his dutch door was closed or she would have found him standing next to her while she was doing the dishes! I am not willing to wait too long for an injury that is for sure. A broken bone is not on my list of things to care for in the next few days. We never met this stage with T and G. T was more than ready at 18 mos for a big boy bed and G transitioned at 20 mos. We avoided those climbing/falls all before they even occurred bc I was so scared. So guess what we are doing this weekend? Like I said, was hoping to save this transition for a time when I didnt have work to get up to in the am bc we all know that as exciting as the new bed may be most of the important people in the house dont sleep too well that first week of the transition. My boy who has been getting dumped awake and putting himself to sleep since a few weeks old is not going to be so kind this go around. It just wouldnt be natural. Yes, it is all exciting and I love that we are following his lead but the time isnt exactly convenient. But when it comes to developmental milestones I am a firm believer in following my kiddos' and thier intentions and I have never been disappointed. We shall see! All I know is that sleep is overrated! (and so is sanity!)
Monday, March 5, 2012
School holiday, who knew?!
Monday, March 5, 2012
Pulaski Day
Original plan for the day: Get G to clinic for count check by 9 and Caden to his 10:30 aptmt to investigate the continuous cold and newer symptoms of green mucous seeping from his eyes and nose. Then NAP to do some recuperating from my own illness and draining hospital stay w mommy work waiting for me upon my return.
spoiler alert: Polish guy not in my corner today
7:00 remember I dont have work today but that doesn't seem to make me feel any better medically! I cant even pick my head up off the pillow.
7:20 am Finally get my explosive feeling head out of bed to be sure T is actually eating his breakfast instead of planning how to recreate some perfect biological world with every little detail figured out in his journal or something!
7:30 Charito announces he does not want to follow through with the aptmt I made for him regarding the raging red eye I came home to on Saturday after w a week in the hospital. I was convinced it was pink eye but bc he thinks he is feeling better he insists I go since we would get charged for a absence fee anyway. I agree that it is prob best I go in and be sure I don't have walking pneomonia. It is already hard enough to get in w my work schedule and well, everything else! And seeing as I remember the signs of how quickly my cold turned to pneumonia in 2010 I dont want that to happen again. Ever Since G and I returned home on Saturday and I got moving more than you do in a hospital room I realized how the littlest of chores were wearing me out. I was clearly out of breathe and struggling after a flight of stairs or hoisting up a load of laundry. It was bad. The sinus pressure had decreased but the tightness in my chest was ridiculous.
7:40 A great friend comes to grab T for school and I now have less than 45 minutes to get myself and Grayson and Caden to an 8:30 aptmt. By the way, G is still sleeping and Caden is dressed thanks to daddy but still needs to be suctioned. And we are already late there is no way G is gonna get his asthma meds in time so I will have to admin to him at dr office
8:15 in car thanks to daddy loading up kids and stroller
8:20 from the car I am courteous enough to call our adult dr office and let them know that they are no longer seeing a male but a female and give them time to pull together files (I know how hospital time works these days)
8:35 meet receptionist
now I wait while my lil ones sit w masks on to shelter from whatever is roaming around the sick waiting room and protect others from my sickos coughs
once seen dr agrees I have a resp virus and cannot do anything for me but if I get worst I am to call him and he will call in an antibiotic. Mission accomplished tho-just wanted to be sure my lungs sounded clear but wait....it's 9:45!!!!
LATE for clinic!!
Rush across Dempster to childrens offices and find crappy parking. But of course as soon as I reach the sliding doors I see 5 open spots way closer than I was stuck with! Annoying!
10:08 now so I stop in to peds office and ask if they just want me to wait around for Caden's 10:30, take me earlier or be okay with my tardiness as I run up to oncology clinic for Grayson
They don't want me to be late so I sit for 20 min and take care of Caden first. The lovely ladies behind the desk know us so they call up to clinic to tell them we are right below them and will be up soon.
10:30 we are in a room and undressing Caden. He recalls his last vaccinations (5 of em in one sitting) and so he is not too happy. Everyone notices his goopy face. After a few minutes later we discover he has ( to my surprise as always bc my kids never display the textbook like symptoms) an ear infection. Explains the whole ear, nose and throat greeny goopy thing. Well at least we know and he can get an antibiotic vs a resp virus w no option for antibitioc. His lungs sound nice clear, too.
11:00 we are upstairs for G at clinic to wait some more bc they just got slammed w patients the last 20 min and there are no rooms for us. I dont mind the wait bc at least I get to sit and eat a Kind bar, my first bite of food all day.
Enter clinic hallway and G runs to hug Meghan (Princess Jennie is officially gone, off to new paths!) and Dr Kwon. Caden follows his lead and hugs Dr Kwon too! Then we are sent to our exam room but we are not going into room 1, 2 or 3 bc they are full and we have to go into 4 G throws a fit. He's telling us Dr Kwon wont know where to find him , he cant go in number 4, it is not Dr Kwon's house. It is not until his maiden Aerum appears to calm him and escort him into room 4 with books that he finally gives in.
He gets accessed and we wait. I fill them in our latest diagnoses and we all just roll our eyes. It is getting ridiculous these days.
Up until this point the boys have been doing great. They have been snacking (Caden actually eating more than he did this time of day the past two days), reading books, playing on my phone and waiting and waiting. Aerum brings G an Ipad to keep him occupied ( I forgot our busy bag at home bc I was so rushed).
12:00 Meghan comes in w his counts. All are fine but ANC AGAIN! 0. As in ZERO!! any help the neupogen gave on Saturday for us to be discharged has been depleted. Plan of action: hope he doesnt get a fever in the next few days and bring him back in on Friday for another count check. Chemo is on hold for an additional week. That is two weeks now without any chemo meds and that scares me. We have never been on hold this long before. I realize we need to be bc you cant give a kid w 0 fighting ability in his system the poisons we know as chemo. I get it but seriously this is getting whacky!!
It was a frustrating point to my day. At least when we were leaving the hospital on Saturday w a dragged out stay thanks to neutrophils I believed it was all behind us and could move on. Who knew I would get sicker, Charito would be sicker, Caden had an ear infection and now we do this all over again. I dont have the energy to! And now I am supposed to go back to work tomorrow and meet my dreaded deadlines and still worry about Grayson. He has nothing protecting him right now and that is shitty scary!!!!
Bu the time I got back to the car I wanted to cry but I still had to pick up Caden's amox, get the boys some lunch, eat something myself and drop off movies at blockbuster (damn one near us closed). We walked in the door at 1:45 with enough time to eat lunch and be ready again to get T from school. The lil ones took mini naps in the car and I got none!
So I sit here venting n dragging out their naps bc I want them in bed in an hour. I am so glad what little brain cells I had left on Sunday night prompted me to get a stew in the crock pot. That and a soup MamaC dropped off yesterday are our dinners for the week.
I am just so frustrated bc had I known my day was going to be like this I would have REALLY been a lazy ass yesterday. Instead I did laundry and cleaned up the kitchen. I barely fed my children bc I was so tired. No big extravagant meals were prepared. I missed them so much that yesterday they were told they could have whatever they wanted to eat all day long. They had oreos, sunchips, goldfish, pears and veggie straws for breakfast. Who knows what G n c had for lunch but T and I had popcorn and candy and pop (I took him to see Lorax bc his class was meeting up at Muvico, and when I got there they were sold out so I had to find another location so he didnt feel left out when everyone talked about it on Monday). Pizza, bananas and rice for dinner and I am pretty sure they had dessert. The only calm time I had was when Charito and I watched Walking Dead and even then G was still awake hiding behind the covers bc we 'are naughty for watching zombies that scare me'. Well, priorities are priorities baby!
So there we are. After a week and half of feeling like we would make progress I feel as though we made none. Pretty annoying and shitty if you ask me. I just want us all to feel better and have some family time. This weekend we are clearly on bubble lifestyle and cleaning this house some more. I dont know what else to do!
Pulaski Day
Original plan for the day: Get G to clinic for count check by 9 and Caden to his 10:30 aptmt to investigate the continuous cold and newer symptoms of green mucous seeping from his eyes and nose. Then NAP to do some recuperating from my own illness and draining hospital stay w mommy work waiting for me upon my return.
spoiler alert: Polish guy not in my corner today
7:00 remember I dont have work today but that doesn't seem to make me feel any better medically! I cant even pick my head up off the pillow.
7:20 am Finally get my explosive feeling head out of bed to be sure T is actually eating his breakfast instead of planning how to recreate some perfect biological world with every little detail figured out in his journal or something!
7:30 Charito announces he does not want to follow through with the aptmt I made for him regarding the raging red eye I came home to on Saturday after w a week in the hospital. I was convinced it was pink eye but bc he thinks he is feeling better he insists I go since we would get charged for a absence fee anyway. I agree that it is prob best I go in and be sure I don't have walking pneomonia. It is already hard enough to get in w my work schedule and well, everything else! And seeing as I remember the signs of how quickly my cold turned to pneumonia in 2010 I dont want that to happen again. Ever Since G and I returned home on Saturday and I got moving more than you do in a hospital room I realized how the littlest of chores were wearing me out. I was clearly out of breathe and struggling after a flight of stairs or hoisting up a load of laundry. It was bad. The sinus pressure had decreased but the tightness in my chest was ridiculous.
7:40 A great friend comes to grab T for school and I now have less than 45 minutes to get myself and Grayson and Caden to an 8:30 aptmt. By the way, G is still sleeping and Caden is dressed thanks to daddy but still needs to be suctioned. And we are already late there is no way G is gonna get his asthma meds in time so I will have to admin to him at dr office
8:15 in car thanks to daddy loading up kids and stroller
8:20 from the car I am courteous enough to call our adult dr office and let them know that they are no longer seeing a male but a female and give them time to pull together files (I know how hospital time works these days)
8:35 meet receptionist
now I wait while my lil ones sit w masks on to shelter from whatever is roaming around the sick waiting room and protect others from my sickos coughs
once seen dr agrees I have a resp virus and cannot do anything for me but if I get worst I am to call him and he will call in an antibiotic. Mission accomplished tho-just wanted to be sure my lungs sounded clear but wait....it's 9:45!!!!
LATE for clinic!!
Rush across Dempster to childrens offices and find crappy parking. But of course as soon as I reach the sliding doors I see 5 open spots way closer than I was stuck with! Annoying!
10:08 now so I stop in to peds office and ask if they just want me to wait around for Caden's 10:30, take me earlier or be okay with my tardiness as I run up to oncology clinic for Grayson
They don't want me to be late so I sit for 20 min and take care of Caden first. The lovely ladies behind the desk know us so they call up to clinic to tell them we are right below them and will be up soon.
10:30 we are in a room and undressing Caden. He recalls his last vaccinations (5 of em in one sitting) and so he is not too happy. Everyone notices his goopy face. After a few minutes later we discover he has ( to my surprise as always bc my kids never display the textbook like symptoms) an ear infection. Explains the whole ear, nose and throat greeny goopy thing. Well at least we know and he can get an antibiotic vs a resp virus w no option for antibitioc. His lungs sound nice clear, too.
11:00 we are upstairs for G at clinic to wait some more bc they just got slammed w patients the last 20 min and there are no rooms for us. I dont mind the wait bc at least I get to sit and eat a Kind bar, my first bite of food all day.
Enter clinic hallway and G runs to hug Meghan (Princess Jennie is officially gone, off to new paths!) and Dr Kwon. Caden follows his lead and hugs Dr Kwon too! Then we are sent to our exam room but we are not going into room 1, 2 or 3 bc they are full and we have to go into 4 G throws a fit. He's telling us Dr Kwon wont know where to find him , he cant go in number 4, it is not Dr Kwon's house. It is not until his maiden Aerum appears to calm him and escort him into room 4 with books that he finally gives in.
He gets accessed and we wait. I fill them in our latest diagnoses and we all just roll our eyes. It is getting ridiculous these days.
Up until this point the boys have been doing great. They have been snacking (Caden actually eating more than he did this time of day the past two days), reading books, playing on my phone and waiting and waiting. Aerum brings G an Ipad to keep him occupied ( I forgot our busy bag at home bc I was so rushed).
12:00 Meghan comes in w his counts. All are fine but ANC AGAIN! 0. As in ZERO!! any help the neupogen gave on Saturday for us to be discharged has been depleted. Plan of action: hope he doesnt get a fever in the next few days and bring him back in on Friday for another count check. Chemo is on hold for an additional week. That is two weeks now without any chemo meds and that scares me. We have never been on hold this long before. I realize we need to be bc you cant give a kid w 0 fighting ability in his system the poisons we know as chemo. I get it but seriously this is getting whacky!!
It was a frustrating point to my day. At least when we were leaving the hospital on Saturday w a dragged out stay thanks to neutrophils I believed it was all behind us and could move on. Who knew I would get sicker, Charito would be sicker, Caden had an ear infection and now we do this all over again. I dont have the energy to! And now I am supposed to go back to work tomorrow and meet my dreaded deadlines and still worry about Grayson. He has nothing protecting him right now and that is shitty scary!!!!
Bu the time I got back to the car I wanted to cry but I still had to pick up Caden's amox, get the boys some lunch, eat something myself and drop off movies at blockbuster (damn one near us closed). We walked in the door at 1:45 with enough time to eat lunch and be ready again to get T from school. The lil ones took mini naps in the car and I got none!
So I sit here venting n dragging out their naps bc I want them in bed in an hour. I am so glad what little brain cells I had left on Sunday night prompted me to get a stew in the crock pot. That and a soup MamaC dropped off yesterday are our dinners for the week.
I am just so frustrated bc had I known my day was going to be like this I would have REALLY been a lazy ass yesterday. Instead I did laundry and cleaned up the kitchen. I barely fed my children bc I was so tired. No big extravagant meals were prepared. I missed them so much that yesterday they were told they could have whatever they wanted to eat all day long. They had oreos, sunchips, goldfish, pears and veggie straws for breakfast. Who knows what G n c had for lunch but T and I had popcorn and candy and pop (I took him to see Lorax bc his class was meeting up at Muvico, and when I got there they were sold out so I had to find another location so he didnt feel left out when everyone talked about it on Monday). Pizza, bananas and rice for dinner and I am pretty sure they had dessert. The only calm time I had was when Charito and I watched Walking Dead and even then G was still awake hiding behind the covers bc we 'are naughty for watching zombies that scare me'. Well, priorities are priorities baby!
So there we are. After a week and half of feeling like we would make progress I feel as though we made none. Pretty annoying and shitty if you ask me. I just want us all to feel better and have some family time. This weekend we are clearly on bubble lifestyle and cleaning this house some more. I dont know what else to do!
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!)
Proof he is kickin' it!
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| Reading with Areum ! love the way he locks eyes with her he adores her |
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| everything was dipped in Ranch (typical steroid pattern!) |
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| 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. |
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| The newly created puppet show with his oversized hospital sox |
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| going pee |
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| more Ranch |
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| love that butt, barely any in them undies |
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