We are at hospital as scheduled... labs came back amazingly fast today.. usual is 90 minutes... came cack in under 20 minutes. His hemoglobin is still low but not low enough for a transfusion. We are waiting to get a new cast put on his leg now.
Monday, January 24, 2011
Friday, January 21, 2011
Chemo Souveneirs
Brody got his last neupogen shot last night... by my count that was about the 146th shot he received and about the 134th one I gave him at home (Bill got the pleasure of doing all the pokes at home). Our sharps container is a 1 gallon vinegar bottle. One of the 5ml prefilled syringes we use is sitting next to it. The bottle is completely full of used syringes (I had to shake the bottle to get them to settle to get the last few in)....
Hopefully that was the last one he will ever have to do.
Brody went in for labs yesterday and did NOT need blood.
He has a CT scheduled for Jan 31st (week 42).
Once again, thanks for all the comments and to those of you that have followed us on our Blog.
Monday, January 17, 2011
Week 40
Brody is still at the hospital with Trish and did not need blood today but his platelets were low so he getting them... this goes in alot faster then the blood so he should be coming home shortly... he has been continuing to feel pretty good this week... he should be at the low point for his counts today so should only feel better from here on.
Sunday, January 16, 2011
Brody with his speech therapy teacher
Brody's speech teacher has been coming to our house once a week to work with Brody. Soon he'll be able to meet her at the school (once his immune system is back to normal).
Brody doing well
As we have mentioned previously, Brody has finished what is his hopefully his last chemo ever. He will have a CT scan in a couple weeks to confirm all looks good. After that he will have his port removed and will continue on some of his oral medications for awhile (2 to 6 months) until he his little body has fully recovered from all the chemo he has received. Brody will also be going through some physical therapy to help him walk normally again. During his surgeries, he suffered some nerve damage to some of the nerves that control the ability to raise his foot. If he has leg and foot stretched out and you ask him to pull his toes towards his face or if you hover your hand above his foot and ask him to raise his foot to touch your hand, he is unable to do so. He has a condition referred to as "foot drop." It is just in his left foot. His right foot is ok but his neurologist stated that there is minor damage in the right foot as well (not complete range of movement but functional). Brody can still walk and run and play. It has not really slowed him down. He has managed to adapt to the situation. Some of the chemo drugs that Brody had to take also cause nerve damage. So this was further exacerbating the situation. Now that he is finished with chemo, his neurologist feels his nerve function will continue to improve rather than cycling between improving and regressing as he has been these last several months. We have been doing exercises (physical therapy) at home with Brody for a few months now that helps to keep Brody's muscles range of movement working so that one day when his nerve function comes back his range of movement won't be limited due to the muscles in his lower calf and heel not being stretched and long enough for full range of movement. We did these exercises for several weeks with Brody before he got fitted for a brace called an "AFO." This brace holds his foot up rather than dropped. He got to pick-out what style he wanted for the brace. He picked a yellow brace with several cars and trucks on it and a red light on the back of it that illuminates when he's walking. The plan originally was for him to wear this brace all the time once he got it. But turned out that it really started to hurt and ache after he wore it for a few hours. So we tried to have him wear it for a few hours and then take it off for a few and then put it back again. He got to where he could sleep with it on for most of the night. Then we had a follow-up with his neurologist. We decided after discussing that he was not able to wear the AFO all day yet that maybe doing a series of casting would help Brody stretch out the muscles etc faster than periodic wearing of the AFO and make it so that he would be much more comfortable with the AFO sooner. So Brody got his first cast on last Monday (the same day as his last chemo). It is a regular blue cast. Looks like he has a broken leg. The cast was put on so that his foot is raised slightly rather than dropped like he usually has it. It does not pull it up as much as his AFO yet. He will have this first cast removed on Tuesday and a new one will also be put on Tuesday which he will wear for a week. The cast he will have put on Tuesday will raise his foot up farther than the one he has on right now. He will keep getting casts removed and new one put on til we get him to where he gets better range to pull his foot up toward his face if he were lying down. Once that range is back from the casting, he will be able to wear the AFO hopefully all the time without it hurting. Eventually, the hope is that his nerves will heal and he will no longer need the brace and will walk normally without it. It is expected to be several months before this happens but likely within the next year. It has been amazing how well Brody has adapted to his cast. It runs and plays like nothing is different at all. Kids truely are resilient.
We are all looking forward to lots of fun activities and trips we have planned over the next several months. There are so many things we want to do that we were not able to do when Brody was going through chemo. We'll be sure to post pics and videos of us all enjoying some of these things. This next year I really just want to focus on spending time together all as a family. Time goes by so fast and kids just grow up too fast. Before Brody was diagnosed I was working a lot of hours on building a new business, had just started a new teaching position at the University of Findlay College of Pharmacy, and was working part-time as pharmacist at Heartland HealthCare Services. I was certainly working full-time plus, plus between them all and rarely had much time with my family. If I look for something good to come from Brody's diagnosis, I would certainly say that it has forced me to realign my priorities. My family most certainly comes first, and really, it always has, but in the past I would often put in a lot of hours working and just planned on being able to spend more time with my family later. Unfortunately there is not always a later. None of us really know what is gonna happen from one day to the next. Making sure I make time for family-time on a regular ongoing basis is now a normal part of my schedule planning. There will still always be work to be done. And really, most of the time, it really can wait. Much of my work-time lately for my own business has been spent on training an Office Manager and setting up things so that if I want or need to take an extended time away from the business myself, things will still function just fine while I am away. I still have a few more things to get in place before this will be the case but very soon I should be able to be away from the business for an extended period of time if I need or want to. I was very excited about my new job teaching with the University of Findlay, College of Pharmacy. However, after Brody's diagnosis I was not able to work as many hours as this position would require. The University was kind enough to offer me a teaching position at a future date whenever I was ready. However, I do not think that I would be able to dedicate the time to this venture for quite some time. Right now, nothing makes me happier than time with my family. Although I do enjoy teaching, there simply aren't enough hours in the day at this point. My goal is to work as few hours as I need to work to help pay the bills. I have been very fortunate that I have a very flexible job as a pharmacist for Heartland Healthcare Services as far as scheduling goes. Everyone at this job has been extremely supportive of our situation and have allowed me to work pretty much whenever I can. In addition, when Brody was first diagnosed several of my fellow co-workers donated vacation time or sick hours so that I would still receive a paycheck when Brody was first diagnosed and in the ICU and I was unable to work. So many folks stepped up and did this that we still received a check from Heartland Healthcare Services through June (til after Brody healed from his major surgery to remove the tumor). This helped us tremendously. The support from everyone over this past year has just been absolutely amazing! We are very lucky to have such wonderful friends, family, co-workers, and employers (and even folks we don't know praying for us).
We will undoubtedly be very anxious for each of Brody's upcoming scans. Unfortunately, rhabdomyosarcoma has a very high recurrence rate. Overall survival is much lower following a recurrence. Brody will likely get a CT scan every 3 months this next year and then every 6 months the second year and then once a year. The longer we go without a recurrence, the less likely the next scan will show a recurrence. His next scan after the one in a couple of weeks should be right after we get back from his Make-a-Wish trip to Disney in Florida. Then his next one after that would be right after we plan to take a trip out west (and to California to visit family there). Once Brody makes it five years without a recurrence, he will be considered cured of this cancer. He will still continue to get lots of scans and tests at least once a year throughout his life though. The chemo and radiation he has received increases his risk for other cancers.
Again thank you to everyone for all of your support. Don't know what we'd do without all of you.
Week 40
Thanks for all the comments...
While Brody got his last chemo on Monday, he is still under treatment for a few more weeks. He goes in for labs tomorrow and may need blood again... not sure since he got blood last monday and he never did that before-- he has also needed platelets several times lately too so he may need one or the other this week some time... He will likely go back in for labs on thursday and then again next monday (week 41). Our dog Tori will be coming back home that week.. she lived with Trish's cousin near Columbus, OH for several months but was keeping neighbors up with her barking and so then moved to Trishs parents house near Lebanon, OH. Tori has visited several times when Brody's counts were up.
Week 42 is an eval week. Which means he will likely go in for a CT scan and probably labs one more time. When they do this he has to drink a contrast liquid so they can get good pics... he had problems drinking this in the past and the last time (about week 26 or so) he ended up getting it via an NG tube (a tube fed up his nose and down to his stomach)-- not sure which he hates more so we plan on letting him decide. We are cautiously optamistic that they won't see anything.
Beyond that this is what we can expect--
We have not got this from his doctors but Trish read that he apparently he has to continue his oral meds for several months (we both assumed he would stop them relatively soon)-- which means Nystatin (swish and spit 3 x per day) to prevent thresh (mouth sores) and Bactrim (antibiotic- to prevent pneumonia due his compromised immune system) twice a day on Fri, Sat, & Sun (we will likely be moving this to different days so his weekends are funner)-- and we will likely continue his zofran for nausea-- a bit-- at least a few weeks.
There is always a chance for re-occurance. I don't like to think about odds or percentages because those are just numbers-- my reasoning is that for any one person, the chance of re-occurance is either 0% or 100%. I will say the longer he goes without it re-occuring, the smaller the chance that it will re-occur later on.
What that means to his treatment is that he will be screened (CT scans we assume) every 3 months for the first year, every 6 months for a while, and then yearly beyond that.
As most of you can imagine, this has been a trying year for our whole family. Everybody has been amazing in how they have dealt with all this-- Brody just being able to put up with all this and still being able to smile and laugh about most things, his Brothers doing all the little things to make him happy-- giving him his way without too much protest- Brody played the cancer card alot- when his Brothers wouldn't let him have his way. Our family and friends stepping up when we needed them. Our employers and co-workers being flexible with us-- I work a rotating shift (4 weeks of days, 4 weeks of nights)-- and I was able to arange my schedule so that I kept on our shift rotation (it gave me days off during the week) but did not have to work nights which made everything easier on us. Trish's employer let her pick her days pretty much-- she only worked their part time and but she cut back her hours even more when Brody got sick... there could be a thousand things I could list... she was scheduled to work Christmas but got it off...
While trying our patience (Brody can be ornery-- he likes to see how far he can push peoples patience at times) , this experience has made me appreciate the moments--every smile and laugh and every hug. I learned the only way I could face anything like this was one day at a time-- and in my case I focused on his treatment as a series of steps that had to be made in order-- down to taking his meds each day. With so much out of your control, I felt that each step was something I could control. Not sure if any of that made sense to anyone.
We will continue to write to the blog for a while-- but as his treatments taper off, our posts should too-- we do plan on having some fun the next few months and will be sure to post up pics and vids-- we have a trip to Orlando, a trip to Hilton head south carolina planned, and are trying to plan a trip out west too.
The Orlando trip is going to be paid for by the Make a wish foundation. The Hilton Head trip is provided by a group called "Hilton Head Heroes" which will provide us lodging for a week down there-- we just have to get ourselves there. We will be paying for the trip out west ourselves-- just haven't worked out the details-- we had been waiting for my vacation schedule to be finalized.
Thats about it for now....
More later... Bill
While Brody got his last chemo on Monday, he is still under treatment for a few more weeks. He goes in for labs tomorrow and may need blood again... not sure since he got blood last monday and he never did that before-- he has also needed platelets several times lately too so he may need one or the other this week some time... He will likely go back in for labs on thursday and then again next monday (week 41). Our dog Tori will be coming back home that week.. she lived with Trish's cousin near Columbus, OH for several months but was keeping neighbors up with her barking and so then moved to Trishs parents house near Lebanon, OH. Tori has visited several times when Brody's counts were up.
Week 42 is an eval week. Which means he will likely go in for a CT scan and probably labs one more time. When they do this he has to drink a contrast liquid so they can get good pics... he had problems drinking this in the past and the last time (about week 26 or so) he ended up getting it via an NG tube (a tube fed up his nose and down to his stomach)-- not sure which he hates more so we plan on letting him decide. We are cautiously optamistic that they won't see anything.
Beyond that this is what we can expect--
We have not got this from his doctors but Trish read that he apparently he has to continue his oral meds for several months (we both assumed he would stop them relatively soon)-- which means Nystatin (swish and spit 3 x per day) to prevent thresh (mouth sores) and Bactrim (antibiotic- to prevent pneumonia due his compromised immune system) twice a day on Fri, Sat, & Sun (we will likely be moving this to different days so his weekends are funner)-- and we will likely continue his zofran for nausea-- a bit-- at least a few weeks.
There is always a chance for re-occurance. I don't like to think about odds or percentages because those are just numbers-- my reasoning is that for any one person, the chance of re-occurance is either 0% or 100%. I will say the longer he goes without it re-occuring, the smaller the chance that it will re-occur later on.
What that means to his treatment is that he will be screened (CT scans we assume) every 3 months for the first year, every 6 months for a while, and then yearly beyond that.
As most of you can imagine, this has been a trying year for our whole family. Everybody has been amazing in how they have dealt with all this-- Brody just being able to put up with all this and still being able to smile and laugh about most things, his Brothers doing all the little things to make him happy-- giving him his way without too much protest- Brody played the cancer card alot- when his Brothers wouldn't let him have his way. Our family and friends stepping up when we needed them. Our employers and co-workers being flexible with us-- I work a rotating shift (4 weeks of days, 4 weeks of nights)-- and I was able to arange my schedule so that I kept on our shift rotation (it gave me days off during the week) but did not have to work nights which made everything easier on us. Trish's employer let her pick her days pretty much-- she only worked their part time and but she cut back her hours even more when Brody got sick... there could be a thousand things I could list... she was scheduled to work Christmas but got it off...
While trying our patience (Brody can be ornery-- he likes to see how far he can push peoples patience at times) , this experience has made me appreciate the moments--every smile and laugh and every hug. I learned the only way I could face anything like this was one day at a time-- and in my case I focused on his treatment as a series of steps that had to be made in order-- down to taking his meds each day. With so much out of your control, I felt that each step was something I could control. Not sure if any of that made sense to anyone.
We will continue to write to the blog for a while-- but as his treatments taper off, our posts should too-- we do plan on having some fun the next few months and will be sure to post up pics and vids-- we have a trip to Orlando, a trip to Hilton head south carolina planned, and are trying to plan a trip out west too.
The Orlando trip is going to be paid for by the Make a wish foundation. The Hilton Head trip is provided by a group called "Hilton Head Heroes" which will provide us lodging for a week down there-- we just have to get ourselves there. We will be paying for the trip out west ourselves-- just haven't worked out the details-- we had been waiting for my vacation schedule to be finalized.
Thats about it for now....
More later... Bill
Tuesday, January 11, 2011
Last chemo
Brody got his last chemo dose yesterday...we are still at the hospital but should be leaving in about 90 minutes or so... his nausea wasn't as bad as last time and he was able to start it earlier in the day yesterday... he hydrated faster then normal. He lost his lunch about 20 mins after getting it felt better a few hours later and tried to eat but couldn't keep that food down either... he had an uneventful night and got a little sick this morning but ate some cheerios about 2 hours ago and is keeping them down...
His hemiglobin is still kind of low and will only drop from here so they are giving him blood now.... it is almost done now and he is due for more zofran (nausea med) in about 15 minutes.... as long as he doesn't get sick in the next hour he will be going home by about 2 pm today.....
Typing on my phone so will try to write more later.
Bill
Subscribe to:
Posts (Atom)