CT Scan coming up

Sorry it's been a little while since our last post.  Brody is having a good day today and has been eating better this week.  Brody went in for labs and chemo this past Monday.  Turned out his hemoblobin was really low and Brody needed another blood transfusion.  He spent Tuesday getting the transfusion.  It has helped Brody's energy level tremendously.  I think this was his 4th transfusion so far.  Today we played on our swing set and then Brody and I went to Maumee Bay State Park.  There is bike trail there next to the Lake Erie shore.  Brody rode his new bike there while I jogged along behind him.  It has been a beautiful, warm sunny day.  We both got our exercise in today and when we got back home we both took a much needed short nap. 

Geordi and Jaden are both sick with a cold this week and have been at Grandma and Papaws all week.  Sounds like they are both getting better and will hopefully be able to come home soon.  Brody (and Mommy and Daddy) really miss them.   Brody, Geordi, and Jaden fortunately all understand that it is very important that nobody sick be around Brody right now.   But of course it's still tough on all of us that simple colds have separated us all right now.

Brody will be getting another CT scan on Monday.  Brody has had his current nephrostomy tube in for more than 30 days and typically they need replaced within 30 days.  The scan on Monday will help the doctors decide if they need to replace his tube or if they can just pull it if the tumor has shrunk enough that he doesn't need it anymore.  If it turns out that it needs replaced again then Brody will have to go under ansthesia again for the surgical procedure. 

Well Brody says he's hungry.  Better feed him. 

Sunday

Brody continues feel well... especially on days he doesn't have to take his Bactrim. He has been eating pretty well after the first few days of his last Chemo round.

He goes in tomorrow for his 1 drug chemo (should be there for just few hours)-- unfortunately he will have to take his bactrim again for 3 days starting tomorrow.

Brody enjoying the day with his brothers and his "girlfriend," Lucy.

This picture was taken on April 11th at a park near our home.  Lucy is Brody's best friend and lives next door.  He asks if Lucy can come over to play just about everyday. 

New Bike

Friday Morning

Brody was admitted monday and discharged tuesday for his 3 drug round earlier in the week. It seems to me he is more naseous this time and has been having difficulty getting in his bactrim without vomitting-- even his nystatin (swish and spit) made him throw up a few times. He did gain back a half pound when they weighed him on monday-- but hasn't ate a whole lot this week

Needless to say- he has gotten gun shy about taking his oral meds... we have been pushing the zofran (for nausea) this chemo round alot and he argues about taking his meds. He has started taking very small sips to get them in-- to me it is prolonging his agony since it is frequently taking him 15 sips to get in 1 1/2 teaspoons of bactrim... it was taking him 4 sips before this week. Anyway, he has finished the bactrim for this week.. will start again on monday with his next 1 drug round.

We are also 3 shots into his 10 neupogen shot round-- this is a shot we give each night to help his white blood cell counts recover... he does this for 10 days after his 3 drug round.

Brody did get a bike yesterday and was enjoying riding around the driveway... Trish took some pics which we will post up later.

Really thats about it. Brody is happy most of the time (when he isn't fighting his meds)... and his video game skills are getting impressive. Specifically "The Simpsons Game" on Wii... there are 15 different story levels to complete and Brody now has the fastest completion time on 3 of them-- playing all alone (you can play 1 or 2 player on 14 of the levels)... we do use the Wii as both a carrot and a stick for taking his meds

Sorry for the lack of updates. Brody continues to feel better. He is eating a little better.  As of last Monday he had dropped another 0.5 pounds from the previous week... he weighed 38.6 pounds the day (march 9) he went in the hospital and weighed 33.5 pounds last Monday. He had a cat scan on Monday and it showed that his tumor had shrunk significantly (about 25%).  We prefer to think his last weight loss was all tumor weight.


Anyway.. he is walking better and eating better the last week.. we continue to have to fight him to take his meds.  He starts his 3 drug chemo combo again tomorrow and we will spend the night in the hospital tomorrow night. They plan on leaving his nephrostomy tube in a few more weeks.. they need his kidneys working well for the chemo round this week.

Really that's about it... Trish took the boys to her parents this weekend (they live about 180 miles south of us-- between dayton and cincinnati) and I had to work.


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Brody walking

http://www.youtube.com/watch?v=ljTn11HOia0&feature=youtube_gdata

http://www.youtube.com/watch?v=eokZoYuu03c&feature=youtube_gdata

These were from this morning, he is walking without holding on now

I think he is feeling better today

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Saturday morning

Brody seems to have bottomed out and is back on the rise from his 3 drug chemo (12 days ago)-- Thursday he didn't eat a lot but yesterday he did slightly better and played more (regular toys)... I've beeen trading Wii time for food bites works for Dad-- probably not a good idea as he will learn to "work Dad" for Wii time... or maybe he has already figured it out-- Dad has a reputation for not being manipulated

Trish seems to have come down with a cold so we are trying to keep her germs away (she has been sleeping with him) . We are supposed to closely monitor Brody's temperature and take him to the hospital if he goes above 101.5-- he has had a few fevers of short duration-- but the highest we've seen is 100... they seem to be of short duration.

He is sleeping in a bit this morning-- he slept very soundly last night... he usually wakes up a few times asking for water or to pee or if he gets tangled in his tube from rolling over-- not a peep last night. Normally takes a nap during the day but skipped it yesterday (probably why he slept so good).

Today is supposed to be nice and sunny (a bit cool 65)... considering going to the zoo.

Thats about it for now...

Riding his smart cycle

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Wednesday

Brody had a good day today.  He kept busy crawling and playing and practicing standing for a large part of the day.  We stayed home all day today and it was raining outside for the majority of the day.  But, Brody stayed busy exploring every room in the house and playing with his brothers.  Today was easier for me following him around since he is finally wearing his bear back-pack for his "plug" (nephrostomy tube) most of the time for me.  He had been refusing to wear it for me quite often which made me very nervous he would catch his nephrostomy tube on something as he has been crawling around.  The day before Easter and on Easter day, he did a lot of crawling around hunting easter eggs and refused to wear his bear back-pack so I was following around behind him making sure the nephrostomy tube didn't get hung-up anywhere.  Brody really enjoyed the easter egg hunts though.  Also, his Grandma, Papaw and Nana came to visit on Easter.  He had a good time playing with all of them and was so happy they could all come for a visit.  We had a beautiful day in Toledo on Easter.  Unfortunately, Brody was very tired on Easter and did not want to go outside at all on Easter to enjoy it even though his Papaw had just helped me hang a new baby swing on the playset for Brody (Brody loves to swing and hasn't been strong enough for regular swings yet).  Brody very much enjoyed swinging on a recent trip he took with his brothers, myself, and my friend Terri to Grand Rapids, Ohio.  He also enjoyed walking up the steps to the slide (with my help) and sliding down the slide for Terri to catch him at the bottom.  And, he enjoyed a stroll along the Maumee River in his wagon and throwing rocks into the river.  He kept us all busy fetching more rocks for him to throw into the river. 

 

I took Brody and his brothers to Maumee Bay State Park last week too.  Brody rode along in his wagon on a boardwalk through wooded marsh land, Jaden rode his bigwheel and Geordi and I both walked.  We found a racoon in a bird house along our journey.  All of the boys enjoyed the hike, the nice weather and the cute racoon.  Brody also took about a hundred pictures along the way with my camera.  I think he took about 30 pictures of the cooler setting in the wagon with him.  So funny what little kids decide to take pictures of.  But he did take some really good pictures of his brothers and the racoon too. 

 

Brody has been doing better the last couple of days eating and taking his medicine.  But I am still very worried about how much weight he has lost and by how little he is still eating. It is still a constant battle to get him to eat.  His jaw pain seems to be bothering him a lot less and he has not been bothered by nausea so much the last couple of days but he just does not have an appetite at all and does not want to eat.  Today for example, he had 4, 8oz sippy cups of whole chocolate milk "spiked" with glutamine, a few bites of scrambled eggs (loaded with cheese and butter), 2 bites of a cinnammon roll, 4 bites of ramen noodles (loaded with butter and glutamine), 3 slices of toast with butter, 2 bites of cheese pizza, and a little bit of cookie crisp cereal.  So today, he ate more than he has been eating but still just not enough to keep him from loosing more weight.  I spend most of the day trying to talk him into eating or drinking something and cooking or preparing something he says he wants to eat but then he ends up not eating.  Unfortanately one of the side effects of one of his chemo meds is a "metallic taste" and unfortunately Brody seems to be experiencing this side effect.  Foods he used to like just don't taste the same anymore and he's not too big on trying new things either.  Plus he just does not have an appetite.  It is really hard for a 4 -year old to understand that he still needs to eat anyway.  Hopefully, we will soon be able to help Brody understand that right now he needs to eat even if does not want to.  We've certainly been trying to help him understand this.  He has made tremendous strides taking his medicines and understanding that he just has to do it.  Hopefully, he will soon be able to do this with food. 

 

Well, it's getting very late and I have an early start to my day tomorrow.  I'll try to update again soon. 

 

Thank you so much to everyone for all of your support!  We are so blessed to have such wonderful friends and family. 

Brody enjoying the day in Grand Rapid's Ohio

 

Standing up yesterday

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Brody's back pack for his "plug".

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Tuesday Morning

Brody got hisVincristine dose yesterday... this is the drug he gets each week-- he gets the other 2 every 3rd week. The side effects of this drug is hair loss, weakness, constipation, loss of deep tendon reflexes

This is done as an outpatient visit-- he goes in, they weigh him, check his vitals, access his chest port and do a blood test- and if everything is ok, they give him his chemo by IV through his chest port. We did this yesterday-- we got there about 10:30 am and were out by about 1:15-- Brody watched some TV and some vids while we were waiting (first for the blood test to come back and then the IV).

He has been fighting us for his oral meds some of the time-- sometimes not. He has managed to keep down his first 3 doses of Bactrim (the one that gave him problems last week)-- so just 3 more to go til next week. His excuses for not taking-- "it's too much" (it is 1 1/2 tsp is alot for a kid), "I'm tired", "it might make me throw up"... it takes alot of coaxing and threats (turn off his movie or video game) sometimes... I guess he decided to give dad a break this morning and he took his Bactrim in 4 sips (one sip every 10 minutes) and he even asked to take the last one early... and just took his nystatin (swish and spit) wihout any complaints... then even went and even pooped in the potty for me (he has been wearing a diaper for accidents-- he is taking a laxative for the constipation-- he had us worried last week when he didn't go for almost 6 days.

We have been trying to get him to eat more-- he just doesn't like alot of foods anymore and seems to fill up pretty fast when he does eat... our "go to" foods are cookie crisp cereal and Raman noodles-- he likes McDonalds Cheeseburgers but decided yesterday he wants them plain now... just cheese and meat. He doesn't like Burger kings cheeseburgers but McDonalds shakes are too thick for him so we have to go to both if we get food for him when we are out-- or we get shakes at "steak and shake".

His jaw doesn't seem to be bothering him this morning- hopefully this stops bugging him.

He is still crawling around-- hurts him to fully straighten his left leg-- he has been sleeping good though. He slept well last night (11 hours straight-- first time in over a month he did that) and seems to feel very good this morning.

Trish didn't get any pictures of his easter egg hunt (around the house)-- she was carrying his nephrostomy bag around as he crawled around  (not sure why she didn't put it in his little backpack we have him use for crawling)-- the boys had a good time doing this-- they practiced for a few days ahead of time.. they will be evaluating him next week for its removal- we have celebrated the removal of each tube/wire connected to him, he is down to just the nephrostomy tube/bag (he calls it his "plug")... there were 7 thing connected to him at one point (pulse ox sensor, blood pressure cuff, heart respiratory monitor (3 wires), chest port IV, arm IV... we will be happy when he gets down to 0.

That about it...

Thanks again for all the support we have been receiving
.
 Bill

Sorry we haven’t updated in a few days—as I said before, no news is good news..

 

Brody continues to feel better overall. He can walk for a bit with assistance now and seems to be able to crawl without a problem (we finally got him to put his nephrostomy tube in a back pack that he wears so he doesn’t drag it when he crawls (Dad is afraid he will catch it and pull it out). Hopefully this will be removed in the not too distant future.

 

He is doing somewhat better taking his oral meds- he managed to keep down his Bactrim (antibiotic) and is now off it til next week when he gets his next chemo dose.He has had a few excursions the last few days. He is also doing better taking his  Nystatin which he just needs to swish in his mouth and spit out… we were having to swab his mouth which he didn’t like and he finally figured out that him swishing and spitting it out without the swap is easier (he did throw up from the swab gagging him before).

 

He is now complaining of jaw pain which is a side affect of one of his chemo drugs so this is making it uncomfortable for him to eat. We are giving him Glutamine supplements (powder dissolved in drinks) which is supposed to help with this. I tried to get him to eat ice cream but for some reason he isn’t interested in it… might need to start making him smoothies…

 

Trish and our friend Terri took the boys went to the park in Grand Rapids Ohio (near the Maumee river) on Thursday while I was at work and Brody went down the slides and on the swing and rode around in a wagon—they were there several hours and had a good time (ate ice cream and looked at the nice views there).

 

On Friday they went to Toys R Us and the boys finally got to use some gift cards they got for their Birthdays last month (Brody turned 4 and Jaden turned 5).

 

Yesterday the boys played around the house—video games and the new toys they got…

 

I’ve finally returned to work after missing 3 weeks mostly helping to care for Brody when he was hospitalized—and have worked the last 4 days (including today-Easter). I am going to continue to work my rotating 12 hour shift schedule as it allows me to work (14) 12 hour days out of every 28 and gives me more “full Days” at home during the week-- but am trying to arrange it so I don’t have to work my night turn (my normal schedule alternates between days and nights every 28 days).

 

That’s about it for now… hopefully Trish will take and post some easter egg hunting pics today.

 

Bill