wednesday's complaints

today Brian has low grade fever...not quite enough to call the doctor, but we're getting close. If we didn't have an appointment already for tomorrow I'd guess we'd be calling.

In fact, I wouldn't be a bit surprised if they kept him for low counts. He's got a headache and he's bleeding from the neupogen injections. All indicators I have seen before of low platelet and RBC counts.
He's not too pale and isn't doing badly, and I don't know how low in adults is that slap your ass back in the hospital line...I just know where it was when he was a kid.

Scott and I had a disagreement today...It happens...."the fix it and make it all better" fairies are apparently on strike and it leaves us with the mess we call life to clean up after ourselves.

It's hard for people who don't live under this type of stress to really understand, I know that, and I shielded many of those people from the reality of it last time. I haven't the time, energy or patience for those niceties this time around.

tomorrow I have to pick up more neupogen at the pharmacy for Brian, as well as the doctor's visit and any unexpecteds that come from that. I also need to get in touch with the guy from hosts for hospitals to see if he has any arrangements for next week, or if I'll need to drive back and forth. Hotel is out of the budget, and we're still trying to get another car on the road since I won't be around to drive Steph to work (or let her take my car)..too many freaking complications. Not enough energy to get them all solved.

FRUSTRATION!!!!!

Monday's update

Well, Brian has thrush. It well might explain why his stomach is still feeling icky. I will need to get a prescription for him to help him get rid of it.

While he has not had thrush before with this chemo protocol, he has had it before with the chemo 10 years ago.

it's uncomfortable, but it shouldn't delay any of his procedures.

He had lab work today and he has a NADIR visit on thursday. Then tuesday we head to Philadelphia for cell counts, and his catheter surgery scheduled for wednesday. He'll start the cell collection procedure following that.

I was terribly disappointed to learn from Scott that Shoprite won't let him break up his vacation time to take a few days here and there to help get Brian settled in to the hospital and then home...So much for that "Family oriented" business....but why am I not surprised. They don't really care about what is going on with their employees...just the bottom line.
Never count on anyone but yourself....that way there is no disappointment.

I am still having some issues with my heart, not really sure what is going on, my medication always work. But I am going to have to pay attention and see if I am consuming excess caffeine, it can cause my heart to be out of rhythm. It makes me tired though and now isn't a good time for me to be tired.

Sunday update

Brian feels pretty good today. A little nauseated, but then the heat isn't helping that much either. It's a little warm and a little humid.

He doesn't feel much like eating, but I am going to make some grilled chicken and he can eat it cold if he feels to hot to eat it warm. I have some wonderful mango salsa he likes.

The warm is making everyone a little cranky. As well as the endless list of things to do. Right now I'd love to get clothes line up, but will all the trees it's a project itself.

My brakes are squealing on the car, so the brakes and the oil change needs to get done before we head to Philadelphia. Scott' s really feeling the stress of not enough time and money right now. He's a little extra cranky. Work is hectic and that's got him under pressure as well.

I know we're going to run out of time in getting ready for next week, but isn't that always how it is with us...oh well...we certainly should be used to it by now.

Brian has to go for blood work tomorrow down to Pocono medical center. Just regular post chemo labs. I know he looks forward to a time when he can just rest and not have to be some place. (and the time in the hospital doesn't count, as it only serves to agitate him all up.)

hopefully this will be a productive stress free week....Hey, I can dream can't I???

Saturday's update

So I spend today thinking it was sunday....did I gain a day?....well not really....

Brian has been feeling badly, but today he was finally feeling better. Less pukey, less bloated, more like he expects to feel. (he says the jolly ranchers made him feel better...)

He's getting the neupogen injections every day...hates them, they burn....

so many thing to get ready since Bri and I will be in Philadelphia most of next week....just not enough time to do all the things we need to get done, and stealing time to do things we want do while Bri feels up to it.

never enough hours in a day to meet expectations.

Brian's home

Yep, my best boy is home. It's always nice to get him home even just after two days.

We had a few small issues today with the chemo. He retained 5 lbs of water and needed a diuretic, his blood pressure did start to drop during the etopicide IV and his potassium is low and he needs a few days of suppliments.

Some of these we've had before, and some are new...and potentially concerning since he will get a massive dose of etopicide as part of the transplant protocol.
He's got a ton of medications to take this week and he will start the neupogen injections tomorrow..three times a day. These are going to cause him some serious discomfort by next week...bone pain, jaw pain all over pain because of the body's bone marrow producing so many cells.

time for some much needed sleep, will try and write more tomorrow

quick tuesday update

home late tonight because Bri started feeling pukie about the time I was thinking of heading home. Still have a ton of laundry, and bathroom cleaning before he comes home tomorrow (dinner time or so) and I haven't even started my pet chores yet tonight.

I picked up his neupogen injections, it is really nice that the hospital has a pharmacy inside it and the wonderful staff helps with getting the rx's down there to get filled. It's a big help. I remember when Bri was younger driving around to find an open late pharmacy to get things filled because we wouldn't get out of the hospital until late at night and he'd need the meds...this is one less things I have to fret over...

now if the laundry only washed it's self.....at least we no longer have an acre of grass to mow...just a little weed whacking in the front and all woods out back. I'm getting a little old for these long days...

monday

Long day, but we all got together to have dinner and cake at the hospital with Brian. Even the kitchen staff and nurses brought him a small cake and sang Happy Birthday.
It was an unexpected surprise.

Brian felt good until early evening. Stephanie and I went home, Scott stayed a little longer until he went to sleep, then Scott left for work from the hospital.

I'll be back down there all day tomorrow...but it was well worth the effort for us all to be together for his birthday especially since he had to be in the hospital for it.

I am tired....terrible traffic on the way home, they are working on 78 right before I have to get off...it took us 40 minutes to go 3.6 miles.

the long short weekend

The weekend seem to fly by. Not that they matter really....Scott works 6 nights a week and my job now is to take care of Brian. But I guess it is just left over from those days of Monday to Friday...
or maybe I still look forward to them because Sunday is the only day we don't get one more bill in the mail.

I've been having trouble with my heart this week. I have a condition called ventricular ectopy and I take several medications for it, but it's really been problematic this week. It keeps me from sleeping or wakes me up. So I am tired and things that need to get done really didn't.

tomorrow we're headed to Lehigh Valley Hospital for Brian to get the third round of ICE chemotherapy. Hopefully he'll come home on wednesday evening. I don't really look forward to the additional expenses or all the sitting this week, but I'd never leave him there alone just because I didn't feel up to going. Even more so because tomorrow is his birthday.

Scott and I had a rough week....it's so hard to live under the constant stress without having little break outs of frustration and despair. Really we do fairly well considering the enormity of what we deal with every day, but it does get tense sometimes. That's where being together as long as we are really helps. We can be angry with one another, but it doesn't really mean anything besides venting. All this car issues and facing the additional expenses just make tempers short.

Today he worked off his angst by washing the cars. Yes, It was annoying to me to see him do something so trival when I feel like there are more important things to do, but he really wanted to wash the cars, and it was father's day, so I kept my big mouth shut. A rare occurrence, but it's important to pick your battles and when you have a constantly upheaval life like we do right now, good choices are important.

Yesterday's trip tp Philadelphia

Well, the day was long...made even longer by the fact that the doctor was called into surgery which pushed our appointment way back. But it was well worth the wait.

I found the Dr. Nasta was competent, honest, compassionate, and I suspect even has a sense of humor. All things I found missing in Dr. Ehmann.

The treatment in Philadelphia complicates things a little for us in terms of additional expenses. We'll probably have to get a hotel room for the 4 day collection procedure, and we have to pay for parking at the hospital which is also pricey. (my sister had a few suggestions on the parking, which I will and already started to look into, but no solutions so far, and I am not comfortable being stranded there without my car.)

the trip into the city isn't bad in terms of the city driving because you are entering from what I consider the back side of Phila and the actual drive in the city is only about 5 minutes. Of course there are the road closure and detours....and Based on the traffic we had leaving...rush hour is not going to be pleasant.
IF PA had bothered to finish their public transit lines out to Allentown or Bethlehem, things would be easier with driving 1/2 way then taking the train in, but where I can pick up the train from is 12 miles outside the city. Then I'd still have to take a cab to the hospital lugging all of Bri's stuff...

But hey, those are only monetary issues. The treatment issues are the important ones and they are resolved and underway. With very little time lost in comparison.
Brian will go into Lehigh on Monday for another round of ICE chemotherapy. Then he will start the neupogen injections at home for 2 weeks, then he will go into U of P 7/6-7/10 for stem cell collection and to have the hickman catherter placement. Then he will come home and rest up and be admitted around the 19-21st to have the transplant.
About two weeks behind Hershey's schedule but at a much higher rated hospital with a doctor that seems to have it together a great deal more. And instead of being resentful and displeased that the patient has an informed support team, Dr. Nasta appreciates an informed support team and I suspect will be come an important part of it. Brian is significantly more comfortable with her as well. He felt like she saw him as a person, not an ends to a means. Perhaps this is why U of P is rated 10th this year and Hershey not even in the top 100.....hum...patient care certainly does play a role.
will update calender soon...

Tuesday's update

Brian has a lingering bad headache today. It's causing him to be very distracted. I asked him to turn the lights off a zillion times and he didn't remember.

Scott and I went out for a little while to just get some space. My utter frustration with things is still hanging around like a wet towel.

On an up note, Uof P called today and pushed Brian's appointment back to noon, which means we don't have to leave until around 8:30-9:00...WAY better then 5:00-5:30. But I am not looking forward to the long drive and we still haven't been able to get the air conditioner fixed in my car. But I am going to do some computer work on thursday in exchange for some car fixing. Every little bit helps right now.

Tonight the sky is so clear you can see every star. It's really beautiful. And it's a very nice temperature also. I hate sleeping when it's hot, and it really has been staying cool in the evenings here so far.

Hopefully tomorrow will bring us a new treatment plan and time frame and I will find this group a little less difficult to work with. I really hope so, because I am worn out and I am not so good at keeping my temper in check when I feel like I do. And unless it is 4 legged and furry and meows, I don't have patience at all.

look for an updated calender in the next few days hopefully.

Monday again..another monday..

and we did have some rain....

I'm tired....I'm a bit depressed...I am even a little worn out....so I worked in the garden. I love to work in the garden and everywhere I dig, the earth rewards me with wonderful rocks (scott calls them boulders) I create garden edging from my wonderful rock gifts.

I split some herbs and moved them around and tonight the garden smells of honeysuckle and peppermint. I came in however because I apparently smell good to a load of mosquitoes. I miss the lemon balm...I didn't bring any with me from the other house and it was so good at keeping bugs away.

tomorrow it's paperwork ...and cars....and getting together everything for he trip to Philadelphia wednesday.

Saturday's update

Brian is cranky...I am sure it has to do with the anxiety Scott and I are unintentionally giving off....it's simply unavoidable.

It was hot and humid here today. I spent most of the day with my cat who died this afternoon. But it was a peaceful passing.
I am sure that even though he'd never say anything, the possibility she had cancer must upset him. And he loved her, we had her for a good part of his life. We have a couple of older cats and there is no way to make that easy.

Other then that, today was not as productive as I had hoped for....but there is always tomorrow.

Hey it's Friday....

Well, I signed into my blog tonight and found all sorts of wonderful new templates to play with....what fun...(yep, easily amused I am)..so enjoy the new layout for now...

Today was a good day for Brian. He feels good, looks good and since he just got out of the shower..he even smells good...and that is just lovely.

The chipmunk was here and we enjoyed watching his antics. He makes us laugh and we never had any before at the other house. He's like a little wind up toy running here and there. Stuffing his face full of seeds and berries.

The goal this weekend is to unpack at least 4 boxes still left over from the move. They are in the closet where the water heater is and taking up much needed storage space.
Since Brian's appointment is wednesday, it is likely things will get busy quick again for us, so I am going to try and be as productive as possible this weekend...

caffeine anyone?.....since I don't like coffee...my brand of poison is diet mountain dew.

I am also going to make some new lists of things to work from since my brain is full.

Special thanks to my long time friend Elizabeth for her well timed generous donation. It will help greatly with the car problem that I haven't really worked on yet.

one thing after another....

Today when I got up it was sunny...by the time I got out of the shower, it was pouring down rain....a sign of how my day was going to be...

First off...Scott's saturn is dead, long live the saturn....it certainly gave us it's best with a LOT of miles on it's little 4 cylinder engine...but the timing?....it sucks....It's too old to be practical to even consider putting a new or even a junkyard engine in it. It's an 1995 with close to 300000 miles and he rebuilt the top of the engine 50,000 miles ago...what will we do?....well that is a question to wring my hands over tomorrow.

Today we decided to go to the other costco because there was road work on rt 80....well....I usually do well with the GPS, but today it had a mind of it's own and apparently decided we needed a family road trip??? (Brian and Steph came along because they were feeling a little bored and wanted to help)
What should have been a 65 mile trip turned out to be a 3 hour trip through the PA countryside. But I wasn't possibly lost, I was still following the gps route.....apparently programed by someone who had a twisted sense of humor perhaps?
The upside was of course the wonderful old homes we passed. The kind built in the 1700's that the kids are not used to seeing outside of the princeton area and not in the quantity seen. We also toured the Lehigh, Moravian and Northampton College campuses, viewed the Bethlehem steel projects, the Quakertown area and Finally located the costco for grocery shopping.
Fortunately we all had a sense of humor about it and Scott had a nap for the whole trip...LOL.

It was actually good for Brian to get out and Stephanie see the colleges. I even found a fabric store for the distant future use.
On the way home, we checked out the PA turnpike because it will be the route I'll be taking back and forth from Philadelphia with Brian.

SO we need a car, but we HAVE food....isn't life just a kick in the pants?....it really is funny in that special sick and twisted kind of way.
But we really did have a nice family day out, only next time?...I'd rather go to the lake.

Here's a video for today's antics...enjoy

Tuesday's thoughts

Today I spent most of the day in the garden. It was very nice here, not hot and it gave Brian a chance to sit outside and enjoy the fresh air (allergies and all) and me to get a little work done on my herbs.

The deer where here last night, I can tell because the little tips of some of my yarrow is missing. But all in all they mostly leave the herbs alone and I have other scraps I put out for them.

The blog has had some interesting visitors reading from Herhsey Medical center. I don't know how they found the blog, but I did see that a search for Dr. Ehmann and the medical center led one reader here...perhaps it just snowballed from there.

Somehow I doubt I am Ms. Popularity there right now, but I only wrote what transpired. (and truth be told a lot of my newspaper printed editorials frequently ruffled a few feathers as well).

I do admit to being a bit picky about those I want to treat Brian, and not without cause...We have experienced several life threatening incidents that had little to do with the treatment and more to do with carelessness and that special kind of thinking some "specialists" suffer from.

There was the blood sugar of 846 episode..(Thanks to the carelessness of Dr. Kamen because he was positive Brian's disorientation was ONLY a side effect of the methotrexate and pumping him full of Robitussin would solve the problem for sure....)...
also the etopicide precipitating in the IV line episode...(not sure where to place the "oopsie" there..failure to get the chemo from pharamacy fast enough...carelessness in the mixing....)

and a few less serious ones. But they tend to leave a lasting impression. Just as some attitudes tend to. But my style is an honest one...talk about the problem, not run to the nearest lawyer and try and make a quick buck. After all, problems aren't solved by malpractice insurance, they are solved with discussions.

But in all seriousness....I am not a difficult person, nor hard to please. I just expect complete honesty, which I will return in kind...and a willingness to work with the whole picture. Is that really so much to ask? If there isn't that kind of relationship then how can I possibly have the confidence needed to hand my son over to a life challenging procedure?

I have dealt with a lot...Brian not only has battled lymphoma twice now, but is a young adult with aspergers who has suffered in many ways either in a learning situation, or from the long term side effects of the chemo with the OCD, or the nerve damage. I can't simply pack up and go home after a long day, have a drink and relax....my job as a parent is 24/7. I see all of the bad, and if I am very lucky I can enjoy the good as well.

There is no better advocate for a patient then the patient him or herself. In lew of that...MOMMY...(mommy from hell if need be...) We don't live in a world where doctor's are gods..they are simply faliable humans just like the rest of us, and there is never going to be a situation where I am afraid to ask the hard questions, and walk away if I don't like the answers. And Nothing is non negotiable. Especially things that are at best a misrepresentation and at worst a flat out lie.

Accepting things without question is for sheeple.

In a way it is a shame, Can you think of a better way to spend a boring as hell month sitting at a hospital bed then in a town know for it's chocolate?....I am going to have to make do with cheese steaks and soft pretzels now....talk about a sacrifice...

Monday, Monday....

Because I have privately received a few questions in regards to my decision about Hershey, I will address some specifics here.

When we had our first meeting with Dr. Ehmann, I was not thrilled with his personality. Now, while certainly I do not use that as a deciding factor, Scott and I certainly were left with the impression that our concerns were trival.
But Dr. Shah did recommend Hershey and Brian's pediatric oncologist didn't have anything negative to say. SO we moved forward...with some doubts...
Some of our concerns certainly were over the procedures and the traveling back and forth. His response was that "they were handled by his team and would be dealt with. Silly me...I assumed that meant that my concerns would at the very least be listened to....Obviously as I found out later, my concerns were of NO concern to Dr. Ehmann.

It's really very basic...it is almost a 3 hour drive to Hershey from where we live. That is a large expense in gasoline at almost $3.00 gallon in my vehicle which gets about 13 miles to the gallon. It is also a great deal of mileage on a 18 yr old car. (that has 258000 miles on it)
after such a long time of dealing with Brian's cancer and continued medical expenses for 10 years, we are simply not in the position to incur new car expenses. Nor any expenses that are not essential. Right now Scott is the only one bringing in a salary though certainly Stephanie donates as much of her tip money she can. There are no magic cancer money fairies. (which is why we appreciate any donations we receive so much).

When I explained and then insisted some of the travel be cut down on, and asked why we could not have some of the procedures done at Lehigh (the lab work to show what diseases Brian has/had/been exposed to) Dr. Ehmann's nurse told me that it wasn't allowed. I insisted she tell me who didn't allow it (thinking I could have a discussion with someone else and explain the situation) and she told me the organization that accredited the hospital with it's transplant status. That is the Foundation of accreditation for cellular therapy.

SO I called them and asked the questions....the foundation told me that any major hospital that used FDA regulated tests could do that testing and in fact, many patients had parts of the procedure done at other hospitals sometimes including the stem cell harvest (which I was not asking for) When a patient lived a distance from the hospital.

Dr. Ehmann called me directly and told me that the lab work and our coming to Hershey for the lab work (and to sign the consent papers...hey even hear of a fax?....that is even legal..)was Non- negotiable. Now...what exactly the reason for that I don't know. (insurance money?....just to be a pain in the ass because I dare question?...only he knows those answers) I decided right then and there that if something as simple as having lab work done was enough to cause a blatant untruth to be told to me, then any confidence I had in the doctor was gone. It is just that simple. How can I trust someone like that with the life of my child?...and yes, even at 23 he is still my child...my very sick child.
Is Dr. Ehmann a good doctor?..well HE thinks he is...and I really do not know..he might be the best in the world, but he is not for us...just that plain and simple. I did not feel like he listened to my concerns, nor addressed them in an acceptable manner. And he did not listen.

SO we chose to go elsewhere. Got Questions or comments?...feel free to leave them...

For those of you who like to write blogs....I recommend Statcounter
it gives you some excellent feedback on your audience.

Sunday update

We are enjoying the lovely weather and have been working around the house inside and out to get some more things done that will make my being gone with Brian a little easier.

I have also been spending much of my time with my long time loyal companion Twittens. It is very likely she is going to die in the next few days and while she is certainly up there in age at 14, I had very much hoped to share a few more years with her, but that is not to be the case. She is a wonderful cat and has rarely left my side since the day I got her. I will miss her very much. Spending my time with her is the focus of the next few days, then I will get back to paper and computer work and any catching up that needs to be done.

Brian has been a little miserable the last few days and isn't feeling very good. He has some gastrointestinal distress and allergies, and he complained that his side hurts, so while I don't know if it is cancer related or not, he's not his best for sure. He is feeling a little better since Scott put the air conditioner in his window though and that should help his allergies and sleeping.

Saturday's update

Brian was not feeling well last night, between the allergies and the humid weather. He didn't get to sleep until early (late) this am and because of this, I too am quite tired.

We're going to sleep for a while, and hopefully everyone will be more energetic later.

Thursday's update

Well,
it's been a long week of re planing, phone calls around to medicaid, University of Penn, Dr.'s office,...etc...

So we are scheduled to see a Dr. Nasta and I already feel better at the idea of leaving Hershey Medical Center behind us.
It is impossible to allow a doctor like Dr. Ehmann care for Brian. Since he was not only so incredibly egotistical and narcissistic, but allowing his nurse to deliberately misrepresent information that I easily verified as untrue. There was also a drastic inconsistency in the original plan for treatment outline and the one discussed weeks later on the phone. While I do not know what exactly the issues were, I do know they were not the doctor/team for us. It is necessary for a doctor to take into consideration the whole picture and not the part of it they want when dealing with a patient and an illness like this.
I certainly do have concerns that at this point, we are approximately 5 weeks behind (with the appointment June 16th) where we might have been with Hershey, we don't have to wait to schedule testing that is already done, and I hope to gain back some of those weeks after our first appointment.

For those of you from Hershey now reading the blog...don't forget to feel free to stop in and say HI!!....

you'll also want to read Monday 6/7 update for a more detailed explanation.

So we will continue on from here. Brian is suffering some allergy issues with sneezing and sniffling and today he had quite the nose bleed, but these are usual spring time events for Brian and don't in of themselves concern me.
He had a nice visit with Anut Deb and Grandma, and was tired from that, but is feeling better today.
I have a ton of paperwork to catch up on from this week and since it looks like several days of rain, will have time to work on it....damn it....
I played hookie from paperwork yesterday and spent the whole day in the garden. It was delightful.

a special thanks to Anut Deb's friend Tina who sent Brian a lovely card and a very kind donation. As always, those things are very much appreciated and help make things a little easier for Brian and all of us.