Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, Family, Infection, Quotes / Inspiration, Scans, Thank Yous, on Monday, December 1. 2008 at
Lots to be thankful for, this year, each day. I could write a book on what I am thankful for, but I won't. Not here.
I do want to say I am thankful to the hospital staff for making Asher's Wednesday MRI go soooo smoothly. Very happy with the care they gave him. We, of course, are still waiting the results, and most likely will get them at clinic mid-December.
I'm also thankful for my mom and her wonderful cooking. It was nice to relax and enjoy and I know she was tired, hot and feet hurt from cooking and I appreciate her so much! We all were stuffed from Thanksgiving lunch.
I'm also thankful for my sister and her husband for making the 13 hour drive down to visit us. I could never image the chaos of getting ready to travel with 4 young kids or even actually doing it. I miss them and love seeing her 1-2 times a year.
I'm thankful for my hubby, for sooooo much, but this past weekend, for letting me sleep in two days and for taking care of all the kids, alone, Friday so I could have an adult day at my mom's house.
I'm also thankful for those of you still coming here to check up on my boy, Asher. He's my world, and knowing he's a small part of your world means so much to me!!
Asher is doing well! However, he has started a low grade fever, yesterday, (100), and just could not hear us the last two days. He only complained about a little pain in an ear, but asked which one, he couldn't say. He never needed medicine for the pain or low grade fever. I am sure he has a double ear infection, or at least in one ear, so off to the doctor tomorrow. He still has a runny nose and is coughing, and this just seems on-going, and on-going. He has DIBELS testing, at school, starting tomorrow (Dec 1-3 I think)....so....not sure....but I don't think I'm sending him to school tomorrow until we see the doctor.
We have some Christmas lights up, outside, but not the tree yet.
update 5:30pm....no sooner than I finished posting this did a fever spike....102.7 right now....and his left ear is hurting where he's in tears....so....he got ear drops and motrin....trying to decide if we'll go to a nearby walk-in clinic, which we think closes at 8pm, or wait till 8am to go to the pediatrician's....he fell asleep on the couch
update 4pm Monday....went to the pediatrician this morning and Asher has a double ear infection....starting Cefdinir tonight
Posted by Steph in
Chemo Round 6 & Transplant, Letters to Asher, Quotes / Inspiration, on Saturday, March 10. 2007 at
I am soooo proud of you Asher-B for hanging in there the last eight months of treatment. I love you little guy!!! Love, Mama
Some quotes for this day:
There are no gains without pains. -Benjamin Franklin
To succeed, we must first believe that we can. -Michael Korda
Let me tell you the secret that has led me to my goal: my strength lies solely in my tenacity. -Louis Pasteur
Yesterday I dared to struggle. Today I dare to win. -Bernadette Devlin
My will shall shape the future. Whether I fail or succeed shall be no man's doing but my own. I am the force; I can clear any obstacle before me or I can be lost in the maze. My choice; my responsibility; win or lose, only I hold the key to my destiny. -Elaine Maxwell
Posted by Scott in
Chemo Round 6 & Transplant, Counts, Quotes / Inspiration, on Friday, March 9. 2007 at
The first three showers, including those at midnight and 6am went like a breeze. As you'd expect, Asher was pretty irritated that we woke him up to shower, but he didn't fuss too much once we got him in there. He's a good kid!
Asher awoke today in a very good mood. he has been very playful with the nurse today (new to him) and even reacted pretty positively to the doctors when they were in here. There really is no change of events today. The doctors are very happy with his progress and his lack of nausea. He's even eating more than they expected I think.
Today for Breakfast, Asher had a container of Dole Peaches, 1/2 of an egg & cheese omelet and a few bites of pancake. We'll keep ordering him food throughout the day to see if he'll continue eating.
He had some problem with his oral meds today and almost gagged on them a couple of times. We're going to have to find another way to give them instead of just squirting them in like we've been doing if he has a problem. He has been able to keep them all down so far though.
Asher had his first shower around 10:30 and he enjoyed squirting the water around the shower. He does still freak out a little bit when I get the back of his head wet.
The doctors had one little concern this morning, surrounding his Liver function. Apparently, the ALT/AST that measures his liver function is slightly higher than upon admission. Either it's the chemo that's doing it, or the fluconosil. They're going to keep an eye on it, and since his Chemo is done Saturday, they think it'll be back down on sunday, and if not, by the middle of next week since he's got a few days of rest coming up. No counts were drawn today.
The chemo went very well today. The thiotepa started at about noon and ended around 3pm. Asher had his shower around 3:30. The etoposide started shortly after that. Asher continues to show no ill effects from the Chemo and was as active as ever today.
He played very well with the Physical therapist, the nurse, child life, and just about everyone who came in today. He showed zero signs of being shy like he can sometimes do.
Asher hasn't eaten anything since breakfast and has refused any of the food that I've ordered for him from the cafeteria or have produced from our cabinets.
His oral meds continue to be harder to take each time. He has almost gagged on a couple tonight. At some point, the nurses say we can switch one or more of them to IV based, but they try not to because they are all a little bit hard on the organs to process and they'd rather keep it out as long as possible.
I did get a recap of his chemistries from today, but no blood counts (cbc)
Uric Acid 2.3
BUN/Creatinine Ratio 45
Those last two numbers are the ones that are higher than when we came in and the one that doctors are going to be watching.
Tonight, we'll have another shower around 9:30pm, then 3:30am, and then tomorrow morning at 9:30 am. We've planned it now so that we only have to wake him up once tonight. Asher took a nap from 4pm-7:30, so he won't be going to be anytime soon!
A quote for today:
They say that time changes things, but you actually have to change them yourself. - Andy Warhol
Posted by Steph in
Chemo Round 6 & Transplant, Quotes / Inspiration, Tests, on Thursday, March 8. 2007 at
When I got to the hospital today shortly after 10am, Asher said to me, "You came back." I said, "Yes, remember yesterday I said I'd be back tomorrow. Here I am." I'm glad to see he is trusting me.
Asher enjoyed his shower today, did his 12pm mouth care without arguement, and his dressing change went very smooth. He barely flinched when the tape was being removed today.
Today's chemo (carboplatin) started around 12:50pm. Really can't even tell he's receiving chemo at this time. It's 2:10pm and Asher is still going strong, in a good mood, playing with car race track and playstation. He refused any lunch, which Scott had ordered before going to work, but did drink 1/2 a carton of milk.
PT came in around 1:30pm and she said his ankles feel great and Asher is looking really good. Asher showed her how his car race track works.
Scott has taken a break and gone to work (since around 12pm) and I think he'll be back around 4pm in time for us to both meet with the doctor that did the neurodevelopmental tests on/with Asher.
Asher was still napping during our hour with the doctor. The results of the neurodevelopmental tests were pretty consistent, being either below average or well within limits. Many of the below average items were much explained/expected since he had a brain tumor and two craniotomies, and 150 days in the hospital in the last 9 months, such as, decreased fine motor sills, inability to potty train, etc. He was better at visual tests than verbal ones, although I am not sure this is always because he is shy, which is what so many people say about him lately. I think he is more reserved with his trust and since he has little to no control over chemo and hospitalizations, when he can control something, he often chooses to not participate, such as these neurodevelopmental tests. With that said, Asher performed pretty well for the doctor, and, interestingly enough, the one session I sat with Asher, he was above average. We discussed a bit about getting a consult from OT while he's in the hospital this next month as he has difficulty holding a crayon or pencil and getting the results he wants with them. Most likely he will be able to continue with therapy, such as speach and maybe even PT and OT.
When he woke up from his nap, we were just finishing with the doctor, and he pretended to go back to sleep, but then started throwing things off his bed at us. He is so silly. That reminds me, during one of his neurodevelopment tests, the doctor said she told Asher, "You silly boy," and he responded, "That's what my mom calls me too."
He was in a super good mood when he woke from his 2 1/2 hour nap. He ate some green beans and then a ham cheese lunchable (again - actually, the kitchen had made this one look like a lunchable all on a plate because they had run out - I was pretty impressed that it looked just like it, ham in circles and cheese in squares and some crackers).
Then he played with the ball from PT with daddy and me and a little baseball, swinging a bat, and this and that.
He was okay about me leaving and when I got home it was just in time before Alexa went to bed (actually she had just gone to bed but gotten up when I got home) and I had her call and talk to Asher and they had a good talk, even talked about Humpty Dumpty.
I'm going to miss my little guy now as I won't be going during the yucky skin-problem-causing chemo. I'll return Monday night or Tuesday morning so Scott can get back to normal work at work instead of working from the hospital. The only concern might be the smell of the preservative they use with the stem cells; we have been warned it smells bad! My smell is so ultrasensitive (as is my stomach) when I am pregnant, so if the smell is too terrible (have heard it is like fish, or sulfur, or garlic), I may have to hold off going full time till around next Thursday or even Friday.
I'll end with two quotes:
A friend emailed me this one recently (and I have read it before (and posted before) but is always nice to read again):
I wanted a perfect ending. . . Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious ambiguity. -by Gilda Radner
Another good one:
You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do. -by Eleanor Roosevelt
Thanks for your continued prayers and support; it helps us to know we're not alone!
Posted by Steph in
Chemo Round 5, Quotes / Inspiration, on Tuesday, February 20. 2007 at
The Strength of an Egg by Juliet Freitag
Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock". Albeit flattering, it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you will see the point I make.
An egg has a polished smooth outer appearance with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an even slightly different angle will break . The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength.
That is where parents of children with cancer (or other serious conditions) are more like eggs than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. These parents are not solid all the way through. They hurt, they fear, they cry, they hope. It takes a very careful balancing act to keep the shell from being shattered.
Balancing an egg while running a household, going for doctor visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty though, parents of kids with cancer (or other serious conditions) will pick themselves up and put themselves back together again.
Posted by Steph in
Head Wound, Home during Treatment, Quotes / Inspiration, Surgery, on Tuesday, November 7. 2006 at
Another dressing change done today....Asher kicked, wailed, screamed, cried, flailed, everything you can imagine, all the way home for the 40 minute drive....demirol wasn't the problem Friday or today as he didn't get any today....I think it just comes down to the fact that he gets woke up from a sleep so fast and he hates it (even at home he hates that). I'm going to ask for a bigger dose of clonodine on Wednesday because the dose today was small so he wouldn't be too sleepy, but I think he needs to sleep a bit more....I'm not sure there are any clear solutions to all of this, but the good news is that Asher doesn't have any anxiety when going TO the appointments. Today Asher woke up around 7am yelling for me from his bed and when I got there he said, "Look, the sun came up." So I got him up and said time to get ready to go for our appointment. He grabbed his green dragon and two packs of water balloons and said he was ready to go (cept I had to get him dressed yet, so did that and then off we went)....then when we are there (which is 1 1/2-2 hours before the procedure even takes place), we have a routine, play games, watch cartoons, and then get Versed, and then get put to sleep. The wound specialist took a photo today so I'll post it here (check out all that hair on his head, although there isn't any on the back where they pull the tape off).
Other than the daily stuff, Asher is playing outside a bunch, playing inside some, riding his tricycle, drinking some but not eating, etc. He threw up his NG tube yesterday and had to get a new one before bed and it went okay (he's still not happy about getting it put in, but who can blame him). He sleeps through the night in his bed with NO problems, going to bed around 7pm-8pm and getting up around 7am-8am. He has his pole with his VAC hanging and tube attached to his head and he has the formula for NG tube feedings going at night too.
All of us are SICK SICK SICK....Alexa has a HORRIBLE cough and is extremely tired all the time....Asher is coughing a little but mostly a snotty nose that needs to be blown (and is hard with a NG tube in there)....Aubree sounds sick in her "voice" but is doing the best out of the three....I am about like Aubree, sound hoarse, sick but I'm blowing my nose a lot yet (don't have that real nasty cough that Alexa has)....Scott is the healthiest of the bunch, as always, but even he is tired and coughing just a bit....so....hopefully we can only get better from here on out.
I'll end with some quotes:
"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do."
"I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious Ambiguity."
"You may have to fight a battle more than once to win it."
"There is only one happiness in life, to love and be loved."