By late afternoon we were able to get G to place both feet flat on the ground and tell him "flat feet, flat feet" to remind him to walk that way. He needed cueing for a couple of hours.
It was like he needed a reminder that the pain was gone and the auto tip-toe walk was not necessary. Odd. Still eating and drinking well. Being a goof as usual.
He and T are in the basement rocking to daddy's new receiver, listening to Paramore n BOB Airplanes & Eminem n Rihanna Love the Way You Lie. Two of T's favs for a while now. Thanks alot daddy! Even G is singing, "wish ry noooww". Cracks me up.
So the day did get better. The worries minimized as the day went on.
But now I gotta go save them from California girls-Katy Perry. Racey, raging, teenie-bopper, hormone-boosting tune, not needed in my home!
Keep your fingers crossed no crazy fevers or other crap creeps up overnite so we can all go to Toy Story on Ice. Even rice baby Caden coming along. I insist he gets out, too! The kid seems to only inhale Bryley fumes, my gross leftovers and sad attempts at remembering how to cook, lysol and poopy diapers. He needs fresh Chicago polluted air, just like the rest of us! To the ice!!!!
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!
Saturday, January 29, 2011
Saturday morning ramblings
January 28, 2011-my catch up of the week. A blurry mess. I am so tired. Another week of being pulled in a million directions.
After his steroid withdrawal aches on Monday night, I returned from work Tuesday and he was still pretty chill on the couch. But by dinner time he was walking around. Wednesday and Thursday were like 2 weeks of couch time rolled into two ACTIVE days. He had so much energy and conversations to get out! It was alot of fun to watch.
But then on Friday, he was on the couch most of the day. Not bc of his mood though. His legs. As we were getting ready for work/school that morning (oh wait that's right-Triston did not go to school Friday bc he came home from school Thursday w suspected pink eye. It was discharging by bedtime and when he woke Friday), Grayson was climbing out of our bed and fell back on his butt bumping his back on Caden's swing behind him. No injuries it appeared, just whines.
But then I had to put the puzzle together after work Friday. Mamac said he was more often on the couch and when he did move he would scoot around on his butt playing trains. I noticed when I tried to put him down in the basement for a "change of scenery" for the boys to play. He remaind on his tiptoes. He would not flatten his foot. I tried to stretch out his feet, flex and such and he was not liking it at all. All I could think of was that he injured himself when he fell that morning. This behavior continued all night.
And then I was not sure if I was over analyzing everything. When I changed his diaper he was a bit red at the body base of his penis ( I guess the lower portion of the abdomen?). Irritated I'm sure from the nasty poops he had all day. But I couldnt help but question if it swollen. I just don't know.
Then it hit me this morning. He prob fell onto his butt yesterday bc when he slid himself off the side of the bed his feet DIDN'T go flat. Those toes stayed put and it threw off his balance. ???? It is just odd to me to be running and goofing off all day Wednesday and Thursday-get my hopes up that he is in back in action -and then overnight his legs tighten up on him like this. It could be chemo or steroids still doing their thing but I dont know. I am soooo on the fence of whether to call the docs.
He is in a good mood. Peeing and pooping. Eating and drinking very well. It is just that it hurts to walk. Something we have experienced before. Will our phone call erase our plans to take him to Disney on Ice tomorrow. See my bro n sis n Ayden that I haven't seen since Christmas? Can it wait til Monday since everything else about him seems fine? I know, I know...you are prob like "it it's bothering you that much than call the dr!" I get it. I just can't express how crazy I can seem and feel at times.
Cancer plays these mind games. But the time I had Grayson, I hardly questioned much about my motherly skills. I was confident in my choices, evaluations, gut feelings. Mothering a child w cancer is so crooked. When you are pregnant all you pray for is a healthy baby. You get past the first time mom fears, first year ifs, first year milestones, first food allergies and from then on the "health scares" seem to be behind you. Yeah, we are always gonna fear those crazy parent things like kidnapping, car accidents, serious injuries, etc. , but overall we think we are in the clear. Then a simple blood panel rips your baby boy of his health. Somewhere in a 4 week period, a time when I was to be enjoying the summer after a insane school year and awaiting Caden's arrival, the Cancer Gods chose Grayson. WHY?! And for everyone involved in his healthy medical life (all doctors and staff and myself in the regular ped dptmt) to be as shocked as we were still makes it difficult. We all knew I had a healthy baby boy. But at some point in July Grayson was sucked in. Those illnesses you pray will never consume your child got mine. I can't help but wonder on what day in July it went bad. What day did his white blood cells spin so violently out of control? And since that day of diagnosis I do question myself as a mother. I analyze and evaluate over and over again. I know we didn't do anything to give him cancer. I KNOW that. But, well but.
So now I watch Caden like a hawk. Triston like a hawk. I did the exact same things w G as T in that first year and a half of life. Is it okay to do it w/ Caden? Caden is just as easy-going and happy and amazing as G and T were at that age. Will he be okay?
Maybe I am not expressing myself clear enough. I don't know. I just know that I worry more than ever about it all. I guess it is just more of what Cancer has done to me.
After his steroid withdrawal aches on Monday night, I returned from work Tuesday and he was still pretty chill on the couch. But by dinner time he was walking around. Wednesday and Thursday were like 2 weeks of couch time rolled into two ACTIVE days. He had so much energy and conversations to get out! It was alot of fun to watch.
But then on Friday, he was on the couch most of the day. Not bc of his mood though. His legs. As we were getting ready for work/school that morning (oh wait that's right-Triston did not go to school Friday bc he came home from school Thursday w suspected pink eye. It was discharging by bedtime and when he woke Friday), Grayson was climbing out of our bed and fell back on his butt bumping his back on Caden's swing behind him. No injuries it appeared, just whines.
But then I had to put the puzzle together after work Friday. Mamac said he was more often on the couch and when he did move he would scoot around on his butt playing trains. I noticed when I tried to put him down in the basement for a "change of scenery" for the boys to play. He remaind on his tiptoes. He would not flatten his foot. I tried to stretch out his feet, flex and such and he was not liking it at all. All I could think of was that he injured himself when he fell that morning. This behavior continued all night.
And then I was not sure if I was over analyzing everything. When I changed his diaper he was a bit red at the body base of his penis ( I guess the lower portion of the abdomen?). Irritated I'm sure from the nasty poops he had all day. But I couldnt help but question if it swollen. I just don't know.
Then it hit me this morning. He prob fell onto his butt yesterday bc when he slid himself off the side of the bed his feet DIDN'T go flat. Those toes stayed put and it threw off his balance. ???? It is just odd to me to be running and goofing off all day Wednesday and Thursday-get my hopes up that he is in back in action -and then overnight his legs tighten up on him like this. It could be chemo or steroids still doing their thing but I dont know. I am soooo on the fence of whether to call the docs.
He is in a good mood. Peeing and pooping. Eating and drinking very well. It is just that it hurts to walk. Something we have experienced before. Will our phone call erase our plans to take him to Disney on Ice tomorrow. See my bro n sis n Ayden that I haven't seen since Christmas? Can it wait til Monday since everything else about him seems fine? I know, I know...you are prob like "it it's bothering you that much than call the dr!" I get it. I just can't express how crazy I can seem and feel at times.
Cancer plays these mind games. But the time I had Grayson, I hardly questioned much about my motherly skills. I was confident in my choices, evaluations, gut feelings. Mothering a child w cancer is so crooked. When you are pregnant all you pray for is a healthy baby. You get past the first time mom fears, first year ifs, first year milestones, first food allergies and from then on the "health scares" seem to be behind you. Yeah, we are always gonna fear those crazy parent things like kidnapping, car accidents, serious injuries, etc. , but overall we think we are in the clear. Then a simple blood panel rips your baby boy of his health. Somewhere in a 4 week period, a time when I was to be enjoying the summer after a insane school year and awaiting Caden's arrival, the Cancer Gods chose Grayson. WHY?! And for everyone involved in his healthy medical life (all doctors and staff and myself in the regular ped dptmt) to be as shocked as we were still makes it difficult. We all knew I had a healthy baby boy. But at some point in July Grayson was sucked in. Those illnesses you pray will never consume your child got mine. I can't help but wonder on what day in July it went bad. What day did his white blood cells spin so violently out of control? And since that day of diagnosis I do question myself as a mother. I analyze and evaluate over and over again. I know we didn't do anything to give him cancer. I KNOW that. But, well but.
So now I watch Caden like a hawk. Triston like a hawk. I did the exact same things w G as T in that first year and a half of life. Is it okay to do it w/ Caden? Caden is just as easy-going and happy and amazing as G and T were at that age. Will he be okay?
Maybe I am not expressing myself clear enough. I don't know. I just know that I worry more than ever about it all. I guess it is just more of what Cancer has done to me.
Tuesday, January 25, 2011
January 25th
Last night was a rough one. We went from encouraging words at clinic ("You are doing a great job as a mom, struggling with all this"; "He is really trucking!"; "He is hanging in there so well!") to a nerve-wracking evening.
Remember how I mentioned the lack of couch removal on Grayson's part the past week or more? Well, it was about the same when we returned home. I continued to monitor his stools and push the fluids and food whenever he was interested. And then all of a sudden 7 pm hit and he was much more whiney than days past. He really was uncomfortable. I figured he was super tired and brought him upstairs.
For the next 5 hours he was miserable.
His whining was indicative of pain. I mean, EVERYTHING aches when he is on any steroid , but this was worrisome. In the past, just being comfy and relaxed on the couch or bed was enough to pass the aches and pains. As long as he didn't walk much he didn't seem to overdo it (at least that is how he seemed to handle it all). He had always been able to tell me what area hurt him in particular. Last night he just repeated over and over "It hurts, mommy it hurts". It was so hard to watch and listen to. It was clear it was mostly his lower body bc he kept adjusting his body as if to push away the pain through his legs or hip or butt. I kept asking him if it was his butt (freaking out that his constipation issue led to a tear w/ internal bleeding!). He said no.
This went on for 5 hours, every 10-15 minutes. He would get comfy, you thought he'd fall asleep and then he would contort his body to push away pain or whatever was going on. Then once he fell asleep it occurred every 40 minutes. He wasn't in overwhelming pain, with screams and uncontrollable rants, but it was different from what we had experienced thus far.
So G and I did not sleep much at all. He woke in a decent mood but ready to hit the couch again. I made him walk to the bathroom to try potty, put his clothes in the hamper and to the couch once we reached the main floor. He was eager to rest. I thought for sure he would take his first nap within minutes of my departure. I determined on my drive to work that I was most def going to put a call into his nurses. I needed to find out if we could administer some pain relief, just in case this new reaction lasted all day long or stole another night of sleep from him.
By 8:30 Mamac called me stating he was shaking. I knew he had received his Pro-Air from Charito before he left and sometimes that can do that to him. It is a steroid. It was occurring whenever he held his cup to drink his milk. As we were on the phone it subsided. As if I dont have enough to worry about from work. He is on my mind all the time! I worry so.
Then she called to say Caden was gagging. Huh? I told her to feed him and let me hear what he was doing. Ah, he was simply reacting to the first nibbles of home-made breakfast---pears. Much diff texture than store bought. I stayed on the phone w her a bit longer and before she knew it he was chowing down. It just took him a few bites to realize it was the same fruit he has always enjoyed just felt diff on that sensitive tongue of his. As if the mommy guilt isn't bad enuf in me for NOT home-cooking Caden's meals, here he goes reacting not so excitedly about IT WHEN I DO! I can't win! And to think I was going to make him some carrots tonite!
When I finally got the chance to call the nurses about G and his sleep-deprived evening I was so relieved I did. Nurse Jennie's first question was to confirm whether we had finished up our Dexamethasone Monday pm. Yes, we did. She continued to explain it as withdrawal. His body is simply going thru withdrawal. How sad for my 2 yr old. Think about that! That little body. Ugh. She asked if he was having some shakes at all in his arms or legs. I concurred. Yep, withdrawal. And she agreed that he has been really good about locating his pain points and from the kind of night I described to her it indicated that everything was going at him at once. Very typical reaction, just not one we had been a part of before. She told me if he seemed to be heading toward a similar evening tonight we could give him some Tylenol. With fine print instructions of course, it is never that easy! We can only give him the Tylenol if he did not have a fever, even the slightest. We don't want to mask anything else brewing. An epsiode like last night could go on for a few more days til his body adjusts to being off the steroid. My poor guy!
And we also talked about stools. As long as the blood I see is bright red it is new blood. Most likely an irritation tear or swell he caused while pushing on Saturday and Sunday. If I see dark red or black blood then that is a sign of internal bleeding (old blood) and we need to call them immediately. New blood is better than old blood. Got it. Now let's hope I don't see much more of any blood!
But this story really does get better! By noon Mamac called me again. But it was actually G on the other line. He gleefully told me, "I play trains mommy! I walking in the kitchen! I watching movies! I eating and eating (and then named all he had eaten). I use my muscles!" He sounded great! He was so happy to talk to me. And before he handed Mamac the phone he said, with his sweet voice, "Mommy, I love you so much!". The tears were forming when he was sharing his day and those words turned the faucet on! Oh, I love my sushi!
I left work on time to help out in Triston's classroom. And to take a peek at his Feeling Journal (the school version). He shared some deep feelings with Mrs Curtin in school yesterday and with myself on the walk home. I wanted to assess the situation. After our chat we headed next door to the other 4 yr old prek room for their combined cooking lesson. It was really nice to be elsewhere. Triston had no idea I was coming and he was surprised to see me. Happy, too. Another guy I missed so much today.
As soon as we walked in the door Grayson lit up! My boy was back in action. He has been taking his time moving about the living room. It is pretty clear he is not as achey as he was. He has some trouble getting up from a seated or squatted position (we have seen that before) but walking around just fine. He tried to run and dance when a fav song came on but immediately fell. He even has some trouble lifting his foot up to step high. One thing at a time baby boy!
Oh, and I was also greeted with the typical ginormous smile from my littlest. Caden always spins that frown upside down! He cracks me up. The one who has no clue that my mind raced in a million diff directions today, I worried from here to the Arctic, and my emotions had to remain bottled up for the most part. He is so innocent, yet so therapeutic with one simple smile. Luv him!
And just bc we are off the steroids DOES NOT mean we say goodbye to the steroid - chunk cheeks just yet,
Gotta love it!
That was my Tuesday...it felt like a whole week wrapped into one day. How was yours?!
AND I got one reprot card done...13 more to go!
Monday, January 24, 2011
Week 25
Jan 24-Chemo Monday
I was prepped for a transfusion day, just in case. Relieved to know it was not needed. His counts are holding strong.
WBC-1.87 (went up a tad)
Hgb-9.1 (came down a bit, but tight number considering what his body went thru last week)
Platelets-433 (went up!)
ANC-690 (was 580 last week, so nice to see)
Weighs-20.7 pounds (Gained 5 oz in a week. Think it was the corn dogs?!) and 33 1/4 in length
All the descriptors of his past week that I gave to his drs today 'are to be expected'. Nothing out of the ordinary. They were pleased he was eating n drinking. Number of naps did not surprise them. It is what this phase is all about. Very similar to flu -like or arthritic aches n pains. Thank you, steroids. In fact, my rundown of Thursday thru Saturday was assumed to be what Charito and I were thinking as well-a dip in platelets. But they are looking good today (all relatively speaking of course).
The best news of the morning-we can take G to see Disney on Ice this Sunday. Even tho he is borderline neutropenic they all agreed he needed to get out. Why deprive him if he is not vomiting, bleeding or diarrhea. They probably also figured he will be in access mode all next week which really limits his physical activity, so why not?
But here is a lowdown on our morning-
Grayson and I were pretty restless last night. We were up just cuddling from 1-3 am. He has been starting out the bedtime in his own bed for weeks now but by 3 am or earlier he is usually in ours. This phase has led to a light sleeper. It was fine with me last night bc I was really concerned about his poops.
WARNING-I AM ABOUT TO TALK POOP-WHAT MOM DOESNT? IT IS GONNA GET GRAPHIC.
He ate so much cheese (did I write about this already?) Thursday and Friday that he was REALLY constipated Friday nite. It freaked us out. He was really straining and his Saturday poops had traces of blood on the outside and when I wiped. You can't help but wonder if there is a tear or just irritation from the firm poops. And if platelets are low whatever the source of blood, it will continue to bleed. Then the Miralax didnt seem to kick in until Saturday evening either. Needless to say, he was very uncomfortable. Small but + fist-sized firm poops= uncomfy boy. There was no missing the signs that he was ready to poop bc he would yell for us to make it an easier process. To ease his positioning we put him on the toilet to help him bear down and he pooped in the potty! A first! He seemed excited. But unfortunately bc he is not craving chocolate this week he could have cared less about his reward-M&Ms. Too bad. But since then he has been willing to sit and try w each new poop, even if he has already done most of it in the pull-up. Oh that's right-as soon as he pooped in the potty the first time I gave him a Cars pull-up and he was MORE excited about that than the chocolate. So, I am riding that wave for now. Whatever gets us closer to it. Like w T, I am taking his lead and running w it. Think I'll be picking up a potty chair for living room so he can make the moves on his own, and it will be easier on any babysitter rather than rushing him upstairs in time (we dont have a bathroom on main floor). We actually witnessed a huge tantrum bc he wanted pull-ups on all weekend. I'll take it!
We were up early dealing w poop (Miralax kicked in big time) and whiney SHRIEKS for corn dogs. He downed that thing like nothing. He should be the new contender for the amazing hot dog eating contest! He was more than upset when I told him he couldn't have cheese. That led to other whiney statements...really anything he could think of. A different hat, bringing random food items to Princess Jennie, wanting Aerum to read him a book, etc. Anything he could think of he whined and demanded occur immediately. Even 50 seconds in the microwave for the corn dog wasn't fast enuf! These are my mornings!
Triston really wanted me to take him to school today. So we rushed around (packing n such in case there was an all day transfusion), I dropped him off then headed to Dr Kwon's. The whole ride there G hunted down trains and looked for Mcds signs. He was in a good moood. I put a mask on him when we pulled into the parking lot and we took a delicious break at the Au Bon Pain bakery inside the hospital. He wanted to get Princess Jennie a cookie and I needed coffee! Harlem Ave was a mess and I was not going to try and truck my way to our local Mcds and try to explain to G that they weren't making chicken nuggets yet! He eyed a spinach filled croissant and pointed out the coffee section to me. The kid know the place by heart. I bought him his "sandwich" and we mosied on up to Kwon's. That is when the crabbies returned. He repeated he wanted to go home. I had to carry him in. He really has caught on and can reach into himself to determine where he would rather be when not feeling up to par. So sad. But once we got in and saw Jennie n Aerum he bucked up and did his job. He devoured that croissant filled sandwich. I even tried to get him another one after clinic and they were sold out. Then he curled up on a chair and rested while I vented to Aerum about some of what has been on my mind. It helped a bit.
Today was just a CBC, blood draw. I just needed to be prepared for a possible transfusion or a chest xray bc of how gunkie his cough got over the weekend. I swear, I feel like every 5-7 days his cough is gunkie again. Asthma + leukemia+winter=pneumomia fears. I had to increase his Pro-Air ( albuterol) to manage it. No wheezing detected this morning. Kwon says he sounds clear.
But we did have a new "thank you, steroids" moment. It took a while for a blood return (when they use the syringe to extract the blood to be examined for counts or to check the line for clarity). His line was flushing fine but it took several pumps to extract blood. And when it did come through it looked foggy to me. Jennie explained it was bubbly bc of all the pressure she had to apply to get it out. She immediately asked if he had finished up his steroids for the week prior. I replied yes and it was an aha moment. You see, the nurses have a theory. With the water retention and swelling that the steroids place on the body's joints n mucles they have noticed that the swelling effects the whole body as well. Thus internal swelling along the port line, arteries, you name it-effects extraction. It is just slow moving and she tells Grayson "we gotta wake up your port". It is not a stressed swelling that I would notice along his port site. Just more little things that can go on internally. No big deal. Just made me think of last night when he woke n told me his "port hurt". I checked it and it was red bc the metal button on his shirt was lying right under the port along the metal lining. We changed his shirt and he said it was all better. Jennie assured me there was no connection w the blood return. Just annoying that's all.
We took out his needle and attempted to leave the exam room. He insisted on being carried. I insisted on finishing my coffee before I carried him again. Doesn't he know by now that mommy always wins these battles. I understand you are achey and playing n running is not your thing this week but you WILL do some walking. He cried the whole way through the hall. Kwon just laughed. Once he made his trek I picked him up for the remainder of our trip to the car. That is all I was asking of him. Done!
Next Monday is quite the day. It is our halfway point in Delayed Intensification. That is pretty big. Even bigger-it will officially be our 6 mos Leukemia anniversary. All I can say to that is WOW. I won't even get into the sad and happy of that. Later.
He is scheduled for a LOOONG day (if counts hold strong we can proceed that day). He will get a IT MTX (spinal of methotrexate); push of Cytoxin and all day flush to check urine output (we will be there to at least 4:30 pm while he is pumped w fluids to flush out that cytoxin); a push of Cytarabine (AraC). That AraC means he will come home with his port in access mode (the needle still in and tubey hanging out). I will have to administer the push of AraC each night the rest of the week. We will also meet our new drug-TG (Thioguanine-an antimetabolite that resembles normal cell nutrients). The side effects are not fun to read about and let's hope he tolerates it. he is on it for two weeks straight. Anything new is always scarey. But no more steroids the rest of this phase, one more PEG injection, two more Vincristine pushes, an additional week of AraC and one more IT MTX. Seems so quick when I tally it down like that. Maintenance is right around the corner.
So, what do I hope for for next Monday? That his platelets are over 75 and ANC over 750 so we can proceed w the long day planned. No stalls now.
And my hopes for this week? His appetite continues. No more bits of blood in his stool. No constipation. The cheery mood he is in as I type this remains (for most of the time). I get (at least) my first set of report cards done without losing my insanity. And that he remains "well enuf" to see Disney on Ice. The last time we were out as a family was Christmas day and the time before that, maybe November? I would have to look it up. The time before that Sept 4. With so few and far between it is easy to remember the mixed emotions on those days. It'll be nice to spend it with family, too. Auntie Amy (baby belly Jack), Uncle Neal and Ayden are joining us. Keep your finger crossed for us, K?
I was prepped for a transfusion day, just in case. Relieved to know it was not needed. His counts are holding strong.
WBC-1.87 (went up a tad)
Hgb-9.1 (came down a bit, but tight number considering what his body went thru last week)
Platelets-433 (went up!)
ANC-690 (was 580 last week, so nice to see)
Weighs-20.7 pounds (Gained 5 oz in a week. Think it was the corn dogs?!) and 33 1/4 in length
All the descriptors of his past week that I gave to his drs today 'are to be expected'. Nothing out of the ordinary. They were pleased he was eating n drinking. Number of naps did not surprise them. It is what this phase is all about. Very similar to flu -like or arthritic aches n pains. Thank you, steroids. In fact, my rundown of Thursday thru Saturday was assumed to be what Charito and I were thinking as well-a dip in platelets. But they are looking good today (all relatively speaking of course).
The best news of the morning-we can take G to see Disney on Ice this Sunday. Even tho he is borderline neutropenic they all agreed he needed to get out. Why deprive him if he is not vomiting, bleeding or diarrhea. They probably also figured he will be in access mode all next week which really limits his physical activity, so why not?
But here is a lowdown on our morning-
Grayson and I were pretty restless last night. We were up just cuddling from 1-3 am. He has been starting out the bedtime in his own bed for weeks now but by 3 am or earlier he is usually in ours. This phase has led to a light sleeper. It was fine with me last night bc I was really concerned about his poops.
WARNING-I AM ABOUT TO TALK POOP-WHAT MOM DOESNT? IT IS GONNA GET GRAPHIC.
He ate so much cheese (did I write about this already?) Thursday and Friday that he was REALLY constipated Friday nite. It freaked us out. He was really straining and his Saturday poops had traces of blood on the outside and when I wiped. You can't help but wonder if there is a tear or just irritation from the firm poops. And if platelets are low whatever the source of blood, it will continue to bleed. Then the Miralax didnt seem to kick in until Saturday evening either. Needless to say, he was very uncomfortable. Small but + fist-sized firm poops= uncomfy boy. There was no missing the signs that he was ready to poop bc he would yell for us to make it an easier process. To ease his positioning we put him on the toilet to help him bear down and he pooped in the potty! A first! He seemed excited. But unfortunately bc he is not craving chocolate this week he could have cared less about his reward-M&Ms. Too bad. But since then he has been willing to sit and try w each new poop, even if he has already done most of it in the pull-up. Oh that's right-as soon as he pooped in the potty the first time I gave him a Cars pull-up and he was MORE excited about that than the chocolate. So, I am riding that wave for now. Whatever gets us closer to it. Like w T, I am taking his lead and running w it. Think I'll be picking up a potty chair for living room so he can make the moves on his own, and it will be easier on any babysitter rather than rushing him upstairs in time (we dont have a bathroom on main floor). We actually witnessed a huge tantrum bc he wanted pull-ups on all weekend. I'll take it!
We were up early dealing w poop (Miralax kicked in big time) and whiney SHRIEKS for corn dogs. He downed that thing like nothing. He should be the new contender for the amazing hot dog eating contest! He was more than upset when I told him he couldn't have cheese. That led to other whiney statements...really anything he could think of. A different hat, bringing random food items to Princess Jennie, wanting Aerum to read him a book, etc. Anything he could think of he whined and demanded occur immediately. Even 50 seconds in the microwave for the corn dog wasn't fast enuf! These are my mornings!
Triston really wanted me to take him to school today. So we rushed around (packing n such in case there was an all day transfusion), I dropped him off then headed to Dr Kwon's. The whole ride there G hunted down trains and looked for Mcds signs. He was in a good moood. I put a mask on him when we pulled into the parking lot and we took a delicious break at the Au Bon Pain bakery inside the hospital. He wanted to get Princess Jennie a cookie and I needed coffee! Harlem Ave was a mess and I was not going to try and truck my way to our local Mcds and try to explain to G that they weren't making chicken nuggets yet! He eyed a spinach filled croissant and pointed out the coffee section to me. The kid know the place by heart. I bought him his "sandwich" and we mosied on up to Kwon's. That is when the crabbies returned. He repeated he wanted to go home. I had to carry him in. He really has caught on and can reach into himself to determine where he would rather be when not feeling up to par. So sad. But once we got in and saw Jennie n Aerum he bucked up and did his job. He devoured that croissant filled sandwich. I even tried to get him another one after clinic and they were sold out. Then he curled up on a chair and rested while I vented to Aerum about some of what has been on my mind. It helped a bit.
Today was just a CBC, blood draw. I just needed to be prepared for a possible transfusion or a chest xray bc of how gunkie his cough got over the weekend. I swear, I feel like every 5-7 days his cough is gunkie again. Asthma + leukemia+winter=pneumomia fears. I had to increase his Pro-Air ( albuterol) to manage it. No wheezing detected this morning. Kwon says he sounds clear.
But we did have a new "thank you, steroids" moment. It took a while for a blood return (when they use the syringe to extract the blood to be examined for counts or to check the line for clarity). His line was flushing fine but it took several pumps to extract blood. And when it did come through it looked foggy to me. Jennie explained it was bubbly bc of all the pressure she had to apply to get it out. She immediately asked if he had finished up his steroids for the week prior. I replied yes and it was an aha moment. You see, the nurses have a theory. With the water retention and swelling that the steroids place on the body's joints n mucles they have noticed that the swelling effects the whole body as well. Thus internal swelling along the port line, arteries, you name it-effects extraction. It is just slow moving and she tells Grayson "we gotta wake up your port". It is not a stressed swelling that I would notice along his port site. Just more little things that can go on internally. No big deal. Just made me think of last night when he woke n told me his "port hurt". I checked it and it was red bc the metal button on his shirt was lying right under the port along the metal lining. We changed his shirt and he said it was all better. Jennie assured me there was no connection w the blood return. Just annoying that's all.
We took out his needle and attempted to leave the exam room. He insisted on being carried. I insisted on finishing my coffee before I carried him again. Doesn't he know by now that mommy always wins these battles. I understand you are achey and playing n running is not your thing this week but you WILL do some walking. He cried the whole way through the hall. Kwon just laughed. Once he made his trek I picked him up for the remainder of our trip to the car. That is all I was asking of him. Done!
Next Monday is quite the day. It is our halfway point in Delayed Intensification. That is pretty big. Even bigger-it will officially be our 6 mos Leukemia anniversary. All I can say to that is WOW. I won't even get into the sad and happy of that. Later.
He is scheduled for a LOOONG day (if counts hold strong we can proceed that day). He will get a IT MTX (spinal of methotrexate); push of Cytoxin and all day flush to check urine output (we will be there to at least 4:30 pm while he is pumped w fluids to flush out that cytoxin); a push of Cytarabine (AraC). That AraC means he will come home with his port in access mode (the needle still in and tubey hanging out). I will have to administer the push of AraC each night the rest of the week. We will also meet our new drug-TG (Thioguanine-an antimetabolite that resembles normal cell nutrients). The side effects are not fun to read about and let's hope he tolerates it. he is on it for two weeks straight. Anything new is always scarey. But no more steroids the rest of this phase, one more PEG injection, two more Vincristine pushes, an additional week of AraC and one more IT MTX. Seems so quick when I tally it down like that. Maintenance is right around the corner.
So, what do I hope for for next Monday? That his platelets are over 75 and ANC over 750 so we can proceed w the long day planned. No stalls now.
And my hopes for this week? His appetite continues. No more bits of blood in his stool. No constipation. The cheery mood he is in as I type this remains (for most of the time). I get (at least) my first set of report cards done without losing my insanity. And that he remains "well enuf" to see Disney on Ice. The last time we were out as a family was Christmas day and the time before that, maybe November? I would have to look it up. The time before that Sept 4. With so few and far between it is easy to remember the mixed emotions on those days. It'll be nice to spend it with family, too. Auntie Amy (baby belly Jack), Uncle Neal and Ayden are joining us. Keep your finger crossed for us, K?
Sunday, January 23, 2011
Bros
Ooops! Caught them jumping over Caden! The hysterics belting from Caden's belly kept me from checking in on the danger! He thought it was hilarious, I thought otherwise.
Kisses
Taken January 16th (before G was couch-bound w the latest chemo treatment)
Ah, those smiles!
Saturday, January 22, 2011
Surrounded by...
CORN DOGS!
We made it to the weekend. No vomit. Limited diet of corn dogs, milk and mozzarella cheese. Tomorrow I will search for THE noodles at Target, maybe I bought them there? But overall, I am pleased with his eating habits. At least he is eating and drinking. But with his choices comes constipation. I haven't whipped out the Miralax since October and boy did he need a dose yesterday and today. When I wiped there was a bit of blood and it did not appear to be in his stool. So, it is most likely from the straining he is doing. You should see him bear-down on something to push (the couch, fridge handle bars, me!). As long as the miralax does it's job we won't have to worry about internal bleeding, espec if platelets are low. Fingers crossed.We also have been on watch for bloody noses (another one of those low platelets scares and humidity vs cold vs anemia vs his cold boogers making it worst). He got a good one out of the blue last nite ( I was off on my date w Triston and Charito texted me). I was willing to leave the movie if it didnt stop but it was under control pretty quickly. But once he has one we monitor him bc his cold boogers/runny nose can push out any clot that formed in his nose to stop the bleeding. Annoying! Luckily any bloody noses we have encountered have occurred within days of our next clinic visit. We don't have stress over a week's time, just a couple of days. And if a transfusion is necessary that is days within reach, too. We learned quickly that pressure to the bleeding nostril instead of the traditional pinch is best for him, as well as ice in more serious bleeds like the numerous times he busts his lips!
Side note-Charito just informed me (Boys and I just woke from naps) that he is headed out to pick up Bryley from the spa. Huh? Yeah, instead of just taking her in for a nail trim (weeks overdue bc we have def neglected her) it was worth the deal for nails and a bath, too. I had to chuckle, bc not only does our baby girl deserve it BUT WHEN is it my turn?!
Our weekend has been full of stress, emotions, lazies and food. This week in particular Charito and I are dealing with our stress and anger by eating-ALOT. We just ordered pizza and picked up movies for tonight. It is all we can do distract ourselves. As if the kids and their upside down moods are not enuf. Unfortunately we are awaiting some disturbing news of a close family member and it is eating away at us. I will share and vent the explosive emotions I am going through once I have more information to pass on. Just pray for us. A scary life atop scary news is never settling.
We are gonna eat and soak up some family time now. As much as I love it, our weekends are getting pretty monotonous. No adventures, no outings, neutropenia and cancer running our lives. Getting old but I know one day it will be better. I just wish I could hit the fast forward button sometimes!
Thursday, January 20, 2011
Week 24 Jan 17-23
It has not been the best week for Grayson. He is so sleepy. Taking 2 two hour naps all before I arrive home. He is eating a bit by 9 am (bologna, noodles, yougurt or cheese). Then he drinks the rest of the day until another hunger surge hits around 3:30 pm after he wakes from that second nap.
He hangs out on the couch and barely gets up to play. His joints must be sore (steroids will do that). Or nauseaus? To cover all bases I have lied a towel over the couch to catch any food crumbs or possible vomit (hasnt occurred yet). I have also brought out the Zofran (the anti-nausea med I havent had to administer since Christmas and before that August). I give him a dose before I leave ( along w his asthma meds, Nystatin and Dexamethasone steroid). Then another when I get home. It is one of those drugs that doesnt hurt to give even if nausea isnt the problem but better to curb that feeling just in case. It is like problem-solving/trial and error. You just cant tell, to be honest. Even though I can get him to laugh n smile when I need to, he is so blah. So drained and beat up looking in his face. Like all the energy has been drained from him by some evil alien. It is sad.
His asthma has really been a stinker this week. We are all fighting colds and he seems to still have a tiny bit left of it. His cough is off and on all day long. I have had to administer his Pro-Air more than twice a day to keep up with that cough which at times are actual asthma attacks. But at least it doesnt seem to peak until the early morning when he wakes and near bedtime so I am here to manage it.
It is all so hard to watch with so much else going on. Work is draining me more than I could ever imagined. And I haven't even begun the two types of report cards that are to be completed by next Friday. Not to mention my endless list of things to do since my return. I bring work home everyday and do not get to it before I want to cry from exhaustive headaches.
Triston is having a nice week at school. No emotional issues at school (frustration levels, stressful moments, trying to control situations) or crab ass moments here at home. He was told if he had a good week at school he and I would go on a date. I am looking forward to it. He told me he wanted to go to a restaurant and sit across from each other like other couples do". He has been super compassionate and lovey dovey with me this week. My biggest baby boy!
Grayson has also been Mr. Affectionate. He wants hugs, kisses and cuddles often. You can tell he just isn't feeling well. And when he doesnt look well we can't help but wonder if a fever is just around the corner. I am just not up for a impromptu hospitalization. Of course, I will always do what is best for my guy but we would really appreciate it if it just would not surface anytime soon. So when there is no fever you can't help but wonder...
a dip in platelets (even though his lips are nice and pink or bright red meaning they aren't dangerously low)?
low hemoglobin (and yet again-has some energy and good complexion)?
joint and bone pain? he does not like to be touched or bothered w. Scolds T for even coming near him! Physical battles to change his diaper when the past mos he has wanted them changed immediately bc it stings or is so uncomfy on that fat-free butt of his
nausea?
or just plain chemo drugs taking their toll on him this week?
or all of the above?
AGAIN, more unknowns.
But on the plus side;
he is eating (not "hide the food" steroid eating like in past steroid weeks but we will take what we can get)-this week taste buds have done a 360-rice, noodles, corn dogs-bread n butter. Blander foods.
drinking (almost 9 glasses of milk a day)
peeing
pooping
interested in tv and reacts happily to his favs and calls out to me to share in his excitement
hardly played off the couch today
laughed along w Bryley today as he played tricks on her
still inquisitive-the town nosey rosey asking me what I am doing at every turn
expressing emotions-no matter how drastic the mood swings are. I have been late to work the past two mornings bc he has tantrummed over one thing or another. Fits that make me jump in fear he is gonna hurt himself. He is so pissed off. Then the minute I get home it is waiting for him to wake and dictate what he may possibly have a taste for. I hate catering to his every need but food is that important and when he IS actually hungry you gotta jump on that wagon bc it passes so quickly, especially if nausea is the culprit. It is beyond frustrating. This evening I had 3 different noodles, rice and a corn dog all made within 20 min bc he has no patience and I can only take the screaming for so long. Wierd how I can tolerate at any amount at work but in my own home I need it to end. I am that dwindled of patience by that time of day. And this was all after I had run to Jewel in search of THE noodles he was consuming w/ out hesitation this morning and yesterday afternoon--and nowhere to be found! I cannot even recall where I got them! Some basil pesto encrusted type organic noodle. Who would have thought THOSE were the ones he'd be screaming for!
Maybe the weekend will be better. More energy. A typical train crazy kinda weekend. Hmm?
He hangs out on the couch and barely gets up to play. His joints must be sore (steroids will do that). Or nauseaus? To cover all bases I have lied a towel over the couch to catch any food crumbs or possible vomit (hasnt occurred yet). I have also brought out the Zofran (the anti-nausea med I havent had to administer since Christmas and before that August). I give him a dose before I leave ( along w his asthma meds, Nystatin and Dexamethasone steroid). Then another when I get home. It is one of those drugs that doesnt hurt to give even if nausea isnt the problem but better to curb that feeling just in case. It is like problem-solving/trial and error. You just cant tell, to be honest. Even though I can get him to laugh n smile when I need to, he is so blah. So drained and beat up looking in his face. Like all the energy has been drained from him by some evil alien. It is sad.
His asthma has really been a stinker this week. We are all fighting colds and he seems to still have a tiny bit left of it. His cough is off and on all day long. I have had to administer his Pro-Air more than twice a day to keep up with that cough which at times are actual asthma attacks. But at least it doesnt seem to peak until the early morning when he wakes and near bedtime so I am here to manage it.
It is all so hard to watch with so much else going on. Work is draining me more than I could ever imagined. And I haven't even begun the two types of report cards that are to be completed by next Friday. Not to mention my endless list of things to do since my return. I bring work home everyday and do not get to it before I want to cry from exhaustive headaches.
Triston is having a nice week at school. No emotional issues at school (frustration levels, stressful moments, trying to control situations) or crab ass moments here at home. He was told if he had a good week at school he and I would go on a date. I am looking forward to it. He told me he wanted to go to a restaurant and sit across from each other like other couples do". He has been super compassionate and lovey dovey with me this week. My biggest baby boy!
Grayson has also been Mr. Affectionate. He wants hugs, kisses and cuddles often. You can tell he just isn't feeling well. And when he doesnt look well we can't help but wonder if a fever is just around the corner. I am just not up for a impromptu hospitalization. Of course, I will always do what is best for my guy but we would really appreciate it if it just would not surface anytime soon. So when there is no fever you can't help but wonder...
a dip in platelets (even though his lips are nice and pink or bright red meaning they aren't dangerously low)?
low hemoglobin (and yet again-has some energy and good complexion)?
joint and bone pain? he does not like to be touched or bothered w. Scolds T for even coming near him! Physical battles to change his diaper when the past mos he has wanted them changed immediately bc it stings or is so uncomfy on that fat-free butt of his
nausea?
or just plain chemo drugs taking their toll on him this week?
or all of the above?
AGAIN, more unknowns.
But on the plus side;
he is eating (not "hide the food" steroid eating like in past steroid weeks but we will take what we can get)-this week taste buds have done a 360-rice, noodles, corn dogs-bread n butter. Blander foods.
drinking (almost 9 glasses of milk a day)
peeing
pooping
interested in tv and reacts happily to his favs and calls out to me to share in his excitement
hardly played off the couch today
laughed along w Bryley today as he played tricks on her
still inquisitive-the town nosey rosey asking me what I am doing at every turn
expressing emotions-no matter how drastic the mood swings are. I have been late to work the past two mornings bc he has tantrummed over one thing or another. Fits that make me jump in fear he is gonna hurt himself. He is so pissed off. Then the minute I get home it is waiting for him to wake and dictate what he may possibly have a taste for. I hate catering to his every need but food is that important and when he IS actually hungry you gotta jump on that wagon bc it passes so quickly, especially if nausea is the culprit. It is beyond frustrating. This evening I had 3 different noodles, rice and a corn dog all made within 20 min bc he has no patience and I can only take the screaming for so long. Wierd how I can tolerate at any amount at work but in my own home I need it to end. I am that dwindled of patience by that time of day. And this was all after I had run to Jewel in search of THE noodles he was consuming w/ out hesitation this morning and yesterday afternoon--and nowhere to be found! I cannot even recall where I got them! Some basil pesto encrusted type organic noodle. Who would have thought THOSE were the ones he'd be screaming for!
Maybe the weekend will be better. More energy. A typical train crazy kinda weekend. Hmm?
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