We get to goooooo. Just waiting for our discharge meds and for Ethan to be deaccessed. So happy we didn't have to stay 3-5 nights. Ethan has been very playful this afternoon and should be able to resume all his normal activities.
Thanks for the love.
-Nikki
About Me
- Ethan Black
- Hi, I am an adorable, blonde, blue-eyed young man. I had Medulloblastoma - cancer. I had a successful resection of my brain tumor, completed six weeks of radiation, 15 months of chemo, and countless surgeries and therapies as the result of treatment effects. These entries journal much of my treatment and progress. I have come a long, long way and I am doing awesome today! Feel free to read and share my story.
Tuesday, April 19, 2011
Cross your fingers, hold your breath...
Just spoke with Dr. Howell, his WBC is 500, ANC 125, but platelets were low again. They just gave another transfusion, however, she'll let us go home tonight as long as the cultures continue to be negative at 5:30pm. Yay!!! Praying we go home. This will be the shortest infection stay if so.
He has not had a fever since the first night and has been perking up. He is still a little shakey but he has the tendency to sit still when he's hooked up, so I'm trying to move him around and loosen his joints. He ate a decent lunch by mouth too!
They gave us a new ointment for his peg tube site too. Hopefully, it helps more the next time his counts are low.
TTYL
He has not had a fever since the first night and has been perking up. He is still a little shakey but he has the tendency to sit still when he's hooked up, so I'm trying to move him around and loosen his joints. He ate a decent lunch by mouth too!
They gave us a new ointment for his peg tube site too. Hopefully, it helps more the next time his counts are low.
TTYL
Sunday, April 17, 2011
Things can change quickly...
We're back in the hospital. He started having low grade fevers yesterday and this afternoon it was high enough to head to the ER. Turns out his counts are all really low again and there is redness at his peg tube site - again.
He'll get platelets, fluids, Cephapine, and Vanco. We'll be here for a few days at least. As usual, Ethan's handling it well. The usual anxiety, but being a trooper. He's got the occasional fever shakes.
There are some new faces here on the floor, but they seem to be attentive and pleasant. Let's hope everything runs smoothly.
Ethan's not the only one in the hospital bed right now. His Grandpa Black is also TRAPPED! We hear he is doing well but won't be able to come out for the visit that was planned at the end of this month. Maybe if we can get Ethan well enough we can visit him before Ethan's next round. Regardless, we are thinking of Grandpa Black and hoping he gets better soon too.
We will update soon with any changes.
-Love to all
He'll get platelets, fluids, Cephapine, and Vanco. We'll be here for a few days at least. As usual, Ethan's handling it well. The usual anxiety, but being a trooper. He's got the occasional fever shakes.
There are some new faces here on the floor, but they seem to be attentive and pleasant. Let's hope everything runs smoothly.
Ethan's not the only one in the hospital bed right now. His Grandpa Black is also TRAPPED! We hear he is doing well but won't be able to come out for the visit that was planned at the end of this month. Maybe if we can get Ethan well enough we can visit him before Ethan's next round. Regardless, we are thinking of Grandpa Black and hoping he gets better soon too.
We will update soon with any changes.
-Love to all
Saturday, April 16, 2011
Still doing well...
We went in Thursday and his counts were holding so he got his Vincristine and we left! He is not due to go back in till next Thursday and, hopefully, will not need anything.
This week is Fiesta in San Antonio and since we are very close to downtown, there has been a lot of activity near our house. We decided to keep the kids out of the crowds so we are just laying low. Actually, the streets are blocked off anyway...
Grandma & Grandpa Black will be visiting soon and the kids are super excited.
Other than that, we have not been up to much. Just enjoying the uneventful right now.
<3
This week is Fiesta in San Antonio and since we are very close to downtown, there has been a lot of activity near our house. We decided to keep the kids out of the crowds so we are just laying low. Actually, the streets are blocked off anyway...
Grandma & Grandpa Black will be visiting soon and the kids are super excited.
Other than that, we have not been up to much. Just enjoying the uneventful right now.
<3
Tuesday, April 12, 2011
More platelets and blood
We went in yesterday for counts, but the clinic was so busy we had to come back in this morning for Ethan to get his platelets and blood. Everything went smoothly and, although Ethan's counts are low, he is doing superbly! He definitely seems a little weak but his spirits are high and his peg tube site looks great. We're hoping his body starts to come around on its own later this week. After his Thursday check up and Vincristine, he should have a three week break before the next round.
Sigh.
It's been a good week.
-Love to all
Sigh.
It's been a good week.
-Love to all
Saturday, April 9, 2011
Update on Ethan's every day life
I thought I'd give an update on Ethan's progress and what his daily life is like.
He still primarily feeds through a tube (a hole in his stomach). He gets two cans throughout the day (four separate feeds) and then two cans on a slow drip (with machine) overnight. He can eat and drink by mouth but there is really only 2 weeks out of a cycle when he feels well enough to do so and it's still not enough. We suspect he'll do fine on his own once he is done with chemo. I believe they told us they will wait several months before they remove the tube post treatment.
He doesn't quite walk on his own yet. He can hold himself up just fine but he's wobbly. Some days are better than others, and, as mentioned above, there really are only 2 good weeks (of a chemo cycle) of physical activity. In those time periods, it almost seems like if he just had a little more time he could walk on his own. We hope to see him walking on his own soon after the chemo is over or even before. He does pretty well with either of his walkers and scoots around the house all the time. He needs assistance going to the bathroom. He can't sit down on the toilet on his own or stand up, but he is making progress with his clothing. He is relearning to dress himself. However, this tires him easily. His dexterity is not the best yet either. Buttons are a pain but he does okay with zippers. His writing is getting much better, but he's switched to being left dominant from right. He does really well in home school and he still has a an awesome memory!
When he gets in his Powerwheel Caddi, he has a great time. No problem steering, pushing the pedal, turning, etc. Great combination of hand, eye coordination activity.
He usually takes an afternoon nap but not always. He sleeps fairly sound, thankfully. He has a tendency to talk in his sleep, but he did that prior to all this.
He doesn't have a lot of home meds. Just the zofran which helps with his nausea. He takes a dissolvable pill under his tounge every six hours. He only uses this for 2-2 1/2 weeks at a time, as the nausea eventually subsides and he stops vomiting.
On an A cycle (six week), he checks into the hospital and gets Cisplatin, Lomustine, and Vincristine overnight at the hospital. If all goes well, it's a 26 hour stay. When we get home, he isn't doing the hottest but really starts sinking after five days. He starts puking right away, due to the Cisplatin, and he vomits continuously for two weeks. That part sucks. I'm better at his feeds and avoiding extra vomits, but you can only avoid so much. One week after his admit, on Thursdays, he goes in for Vincristine which he gets at the clinic and doesn't have to stay overnight. This stuff makes him extra pukey, so Sat and Sun we are guaranteed a little extra! His counts are always low at this point and he usually will need a platelet transfusion. Then, we typically go back in the following Monday for a blood transfusion and another platelet if needed. Then, again, two weeks post admit, he will get another shot of Vincristine and more blood and platelets depending on counts. After that, he typically starts the climb back up. Of course, there are unplanned visits in there some times. Infections, fevers, flu, etc.
On a B cylce (four week), he goes in for one night as well and gets Cyclophasphomide with Mesna and Vincristine. It seems like it hits him harder faster, but does not last as long. He does not vomit near as much but his counts still sink and he needs transfusions. He also gets another Vincristine one week post admit.
Every time he gets meds or needs his counts checked he has to get his port accessed. This is a needle going into a port placed in his chest. HE HATES THIS! He has a lot of anxiety because of this. His is not always reliable either, sometimes they have to poke him 2-3 times. Sucks that these little kids have to go through all this, but it is all part of the life saving process.
Here is his treatment plan:
Surgery 5/4/10
June 2010: 6 weeks of radiation with Vincristine
4 weeks off
Chemo Cycles begin: AABAABAAB
He only has two cycles left!!!!!!!!!!!!!!!!!
Obviously, we have seen a lot of improvement. The wearing off of the effects of the radiation has helped tremendously. PFS is much better too - from practically being paralyzed and speechless to today it is unbelievable! However, the accumulating effects of the chemo are taking their toll. He gets neutropenic quickly now. Thankfully, we are near the end!
He gets Speech therapy 2-3 times a week for 30 minutes. He has PT & OT two times a week for 45 minutes a pop. He enjoys his therapies... LOVES MS. AMANDA, his physical therapist.
He also does homeschool twice a week for two hours a pop. I thought he'd be behind since he started recently, but he does great. He really likes his teacher too.
We still go to the zoo and museum often. He goes for a ride in a double stroller with his sister daily. I think we all still have had a great year together, despite it all. We are really looking forward to the years to come and Ethan feeling strong and healthy.
EVERYONE we know has helped us tremendously and we are very thankful. BAMC has been a great hospital and I love Ethan's doctors and nurses. I feel like they are all my friends, not just Ethan's medical staff.
My brother, Cole, jokes that he doesn't help much but he really does. He is always there if I call. He's a great Uncle and entertainer to the kids. He keeps me fairly sane too. I think the last six months would have been a lot lonlier and harder without him here - THANKS COLE! <3
Okay, I'll close here. That is sort of daily life... and yearly...
Thanks again to all of you.
He still primarily feeds through a tube (a hole in his stomach). He gets two cans throughout the day (four separate feeds) and then two cans on a slow drip (with machine) overnight. He can eat and drink by mouth but there is really only 2 weeks out of a cycle when he feels well enough to do so and it's still not enough. We suspect he'll do fine on his own once he is done with chemo. I believe they told us they will wait several months before they remove the tube post treatment.
He doesn't quite walk on his own yet. He can hold himself up just fine but he's wobbly. Some days are better than others, and, as mentioned above, there really are only 2 good weeks (of a chemo cycle) of physical activity. In those time periods, it almost seems like if he just had a little more time he could walk on his own. We hope to see him walking on his own soon after the chemo is over or even before. He does pretty well with either of his walkers and scoots around the house all the time. He needs assistance going to the bathroom. He can't sit down on the toilet on his own or stand up, but he is making progress with his clothing. He is relearning to dress himself. However, this tires him easily. His dexterity is not the best yet either. Buttons are a pain but he does okay with zippers. His writing is getting much better, but he's switched to being left dominant from right. He does really well in home school and he still has a an awesome memory!
When he gets in his Powerwheel Caddi, he has a great time. No problem steering, pushing the pedal, turning, etc. Great combination of hand, eye coordination activity.
He usually takes an afternoon nap but not always. He sleeps fairly sound, thankfully. He has a tendency to talk in his sleep, but he did that prior to all this.
He doesn't have a lot of home meds. Just the zofran which helps with his nausea. He takes a dissolvable pill under his tounge every six hours. He only uses this for 2-2 1/2 weeks at a time, as the nausea eventually subsides and he stops vomiting.
On an A cycle (six week), he checks into the hospital and gets Cisplatin, Lomustine, and Vincristine overnight at the hospital. If all goes well, it's a 26 hour stay. When we get home, he isn't doing the hottest but really starts sinking after five days. He starts puking right away, due to the Cisplatin, and he vomits continuously for two weeks. That part sucks. I'm better at his feeds and avoiding extra vomits, but you can only avoid so much. One week after his admit, on Thursdays, he goes in for Vincristine which he gets at the clinic and doesn't have to stay overnight. This stuff makes him extra pukey, so Sat and Sun we are guaranteed a little extra! His counts are always low at this point and he usually will need a platelet transfusion. Then, we typically go back in the following Monday for a blood transfusion and another platelet if needed. Then, again, two weeks post admit, he will get another shot of Vincristine and more blood and platelets depending on counts. After that, he typically starts the climb back up. Of course, there are unplanned visits in there some times. Infections, fevers, flu, etc.
On a B cylce (four week), he goes in for one night as well and gets Cyclophasphomide with Mesna and Vincristine. It seems like it hits him harder faster, but does not last as long. He does not vomit near as much but his counts still sink and he needs transfusions. He also gets another Vincristine one week post admit.
Every time he gets meds or needs his counts checked he has to get his port accessed. This is a needle going into a port placed in his chest. HE HATES THIS! He has a lot of anxiety because of this. His is not always reliable either, sometimes they have to poke him 2-3 times. Sucks that these little kids have to go through all this, but it is all part of the life saving process.
Here is his treatment plan:
Surgery 5/4/10
June 2010: 6 weeks of radiation with Vincristine
4 weeks off
Chemo Cycles begin: AABAABAAB
He only has two cycles left!!!!!!!!!!!!!!!!!
Obviously, we have seen a lot of improvement. The wearing off of the effects of the radiation has helped tremendously. PFS is much better too - from practically being paralyzed and speechless to today it is unbelievable! However, the accumulating effects of the chemo are taking their toll. He gets neutropenic quickly now. Thankfully, we are near the end!
He gets Speech therapy 2-3 times a week for 30 minutes. He has PT & OT two times a week for 45 minutes a pop. He enjoys his therapies... LOVES MS. AMANDA, his physical therapist.
He also does homeschool twice a week for two hours a pop. I thought he'd be behind since he started recently, but he does great. He really likes his teacher too.
We still go to the zoo and museum often. He goes for a ride in a double stroller with his sister daily. I think we all still have had a great year together, despite it all. We are really looking forward to the years to come and Ethan feeling strong and healthy.
EVERYONE we know has helped us tremendously and we are very thankful. BAMC has been a great hospital and I love Ethan's doctors and nurses. I feel like they are all my friends, not just Ethan's medical staff.
My brother, Cole, jokes that he doesn't help much but he really does. He is always there if I call. He's a great Uncle and entertainer to the kids. He keeps me fairly sane too. I think the last six months would have been a lot lonlier and harder without him here - THANKS COLE! <3
Okay, I'll close here. That is sort of daily life... and yearly...
Thanks again to all of you.
Thursday, April 7, 2011
Thursday Chemo and Counts
Counts are decent but he needed platelets so we're hanging out till the transfusion is over. Other than that, things have been going smoothly. Surprisingly, not a whole lot of vomiting this round - so far!
We will probably have to come back soon to get a blood transfusion. Until then, we will just hang out and pray he doesn't get sick. :)
He has an eye test on April 25th to check his vision and discuss options to correct his crossed eyes post cancer treatment. Then, another hearing test will be scheduled.
Until later...
We will probably have to come back soon to get a blood transfusion. Until then, we will just hang out and pray he doesn't get sick. :)
He has an eye test on April 25th to check his vision and discuss options to correct his crossed eyes post cancer treatment. Then, another hearing test will be scheduled.
Until later...
Monday, April 4, 2011
-Hanging in there
Ethan's been doing pretty well. Not too much vomiting but quite a bit of weakness. We're just praying for an easy cycle this time with no unplanned admits!!! Thursday we go in for vincristine and to check counts. I don't think he'll need any products but maybe. For some reason I can't remember the trend - if he needs them the second week out or right away? The recent B cycle threw me off.
I don't remember if I mentioned, but the last hearing test had a little more hearing loss in the upper octaves in the right ear. Nothing in the voice range and no major drop so they did not alter dosages.
I still haven't heard the final results on the MRI but the preliminary pretty much covered it. Everything looks really good, no cancer cells spotted! YAY!!!
It's hard to believe we have been doing this for almost a year. It really seems like just last week we found out. We've had so many changes this year. From moving, Ryan joining the Army, Ryan trying to swing a year-long master's program amidst all Ethan's treatments, and me becoming a housewife! I can't complain too much, as staying home with the kids is a gift, but I really appreciate Ryan for managing all these changes and doing it so successfully.
Barring no setbacks, Ethan's last round should be in June. We are so excited and so thankful he has come this far. Ethan is such a trooper. Today, even as weak as he is, we practiced walking with him just holding one of my hands and walking next to me versus in front. Every day is a challenge for him but he just keeps pushing through it. We love him soooo much - he has such a sweet heart.
And Brynn, who is absolutely 100% just as amazing. For a little 2-3 year old girl to have to endure all of this too, all the pain and changes she has witnessed Ethan go through, her outlook must be so enlightened for her age. We always think of how Ethan's perspective must be about life, but his little sister has had no veil either. Thankfully, they play together all the time now and it is a joy to see again. There were months on end where they just weren't on the same page, not to mention all of Ethan's physical limitations he was dealing with.
Well, I'm rambling a bit...
I'll update again soon.
Love to all,
Nikki
I don't remember if I mentioned, but the last hearing test had a little more hearing loss in the upper octaves in the right ear. Nothing in the voice range and no major drop so they did not alter dosages.
I still haven't heard the final results on the MRI but the preliminary pretty much covered it. Everything looks really good, no cancer cells spotted! YAY!!!
It's hard to believe we have been doing this for almost a year. It really seems like just last week we found out. We've had so many changes this year. From moving, Ryan joining the Army, Ryan trying to swing a year-long master's program amidst all Ethan's treatments, and me becoming a housewife! I can't complain too much, as staying home with the kids is a gift, but I really appreciate Ryan for managing all these changes and doing it so successfully.
Barring no setbacks, Ethan's last round should be in June. We are so excited and so thankful he has come this far. Ethan is such a trooper. Today, even as weak as he is, we practiced walking with him just holding one of my hands and walking next to me versus in front. Every day is a challenge for him but he just keeps pushing through it. We love him soooo much - he has such a sweet heart.
And Brynn, who is absolutely 100% just as amazing. For a little 2-3 year old girl to have to endure all of this too, all the pain and changes she has witnessed Ethan go through, her outlook must be so enlightened for her age. We always think of how Ethan's perspective must be about life, but his little sister has had no veil either. Thankfully, they play together all the time now and it is a joy to see again. There were months on end where they just weren't on the same page, not to mention all of Ethan's physical limitations he was dealing with.
Well, I'm rambling a bit...
I'll update again soon.
Love to all,
Nikki
Friday, April 1, 2011
We're home!
Everything went very smoothly - only one vomit and, other than the slow start, the night went off without a hitch. We had a big, quiet room so the only thing keeping us up was the usual hydration (makes Ethan pee hourly).
They let us out early at 11 am. Which is funny because I was so upset about them not getting things going till three hours after I got there potentially causing us to be there three hours longer. In the end, however, we got out three hours early. Just goes to show me that I should not fret so much about the small stuff and be so much more patient. Man... it's hard.
Once again, thank you to every one who reads, thinks, prays, and more about Ethan. I know all the positive energy out there helps him and our family exponentially.
Now, only two more rounds and, hopefully, no extra admits in between.
I'll update next week or sooner if any changes.
Love to all,
Nikki
They let us out early at 11 am. Which is funny because I was so upset about them not getting things going till three hours after I got there potentially causing us to be there three hours longer. In the end, however, we got out three hours early. Just goes to show me that I should not fret so much about the small stuff and be so much more patient. Man... it's hard.
Once again, thank you to every one who reads, thinks, prays, and more about Ethan. I know all the positive energy out there helps him and our family exponentially.
Now, only two more rounds and, hopefully, no extra admits in between.
I'll update next week or sooner if any changes.
Love to all,
Nikki
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