SinnerSaint

Hello all,
We got Anna’s abdominal/pelvis MRI Friday, and since we have a small lull in our weekend (now that we’re taking Anna out and about in the great wide world) I thought I would pass the results on to everybody. BIG WARNING!! Between the actual MRI results and my doctor-to-normal-person translation, this is going to be a looooong one.
Findings: There has been improvement in the known left adrenal neuroblastoma. The mass is smaller in size and heterogeneous (composed of different substances or the same substance in different phases, as solid ice and liquid water), with signal that suggests mineralization (the process through which an organic substance becomes impregnated by inorganic substances). The lesion now measures approximately 5.6 x 5.0 x 2.5 cm. there is still evidence of some encasement of the vessels, including the celiac axis (The celiac artery, also known as the celiac trunk and also spelled as coeliac in the UK, is the first major branch of the abdominal aorta, the largest artery in the abdominal cavity) , left renal artery (The renal arteries normally arise off the side of the abdominal aorta, immediately below the superior mesenteric artery, and supply the kidneys with blood) , probably the right renal artery, portions of the left renal vein (The renal veins are veins that drain the kidney) and aorta (the largest blood vessel in the body, originating from the left ventricle of the heart and bringing oxygenated blood to all parts of the body in the systemic circulation).
There is probably still encasement of the superior mesenteric artery (the superior mesenteric artery (SMA) arises from the anterior surface of the abdominal aorta). I do not see tumor extending towards the porta hepatis (the porta hepatis is a short but deep fissure, about 5 cm long, extending transversely across the under surface of the left portion of the right lobe of the liver) like before. It does cross midline and is still interaortocaval, but improved. The tumor is up against the left psoas muscle. There is less mass effect upon the left kidney. The left kidney is still slightly malrotated. There is improved mass effect upon the pancreas.
As for the liver, essentially the liver is clear. There is still questionable one liver lesion remaining. The gallbladder is unremarkable. No renal lesions are seen. The right adrenal gland is normal.
So, it seems the adrenal mass has shrunk another 2 cm and it appears to be dead scar tissue. What’s left of it still surrounds quite a few veins and arteries. The lesions on the liver are now down to one remaining lesion. The results of these studies have been passed along to the surgical team and we hope to hear from them fairly soon. We were told to call them Wednesday if they haven’t contacted us. Hopefully they will be able to go in and remove everything that’s left.
Thank you all again for everything, keep the positive flow going, I think we’re seeing light just up ahead. Hoping for good news from the surgeons. I will, of course, keep you all updated.
Thanks again and be talking to everyone in a couple days,
SS

I don't understand why everyone is just now all of a sudden mad at Posi and the AE changes. Don't get me wrong, I was FURIOUS at his first post, if for nothing else then the tone and attitude he took in it. It was more akin to getting a pissy letter from someone who pays me to play CoH, rather then the other way around. This time I just don't see the point. Yeah, I'm going to lose 79 badges that I worked to get, but it just doesn't anger me as much as the prior message did. That being said, sign me up for tonight's run and I'll see you there.

[ QUOTE ]
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We will gain more with the Going Rogue system if you decide to switch sides.

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I'm thinking probably not as you've phrased it. Will 'Going Rogue' introduce more badges? Probably. However, it has been stated that 'going rogue' will give certain benefits and 'saying on one side' will ALSO give benefits - different ones.

I would wager that both 'switching' and 'not switching' will offer the same number of additional badges (which might well be zero - who knows).

[/ QUOTE ]
I'm pretty sure he just means if you take a hero redside, the redside badges will now be available.

Hello All,
I have the MIBG results, and here we go;
1. Marked interval improvement with minimal radiotracer uptake in the left adrenal mass, suggestive of favorable response to therapy with small residual tumor.
2. Less discrete radiotracer uptake in the left hepatic lobe lesion suggestive of significant interval improvement.
3. Interval resolution of radiotracer uptake in the left orbit metastasis.
So, I asked the doctor exactly what “interval improvement” meant, and he told me it means the scan doesn’t see any glowing trace of the cancer. It looks as if the mass on her cheekbone and adrenal gland are dead and she has gone from the original seven lesions on her liver to one.
The doctors want to verify the MIBG with a 24 hour urine test, where they will look for the chemical this type of cancer puts out. They are also passing the MIBG results over to the surgeons to see whether the next step will be removing the mass from her adrenal gland or something else. They may also request another abdominal MRI since the latest one available is from January.
This is awesome news, just awesome. Thank you all again so much for all the prayers and positive thoughts.
SS

Hello Everyone,
I know some people have been expecting me to post since Thursday, but it has been a crazy busy week. As you know, we took Anna to the ER on Friday for the issue with her lower left lip not moving, especially when laughing or crying. Since then she had her usual appointment on Monday and her doctor set her over to have her neck given an Ultrasound. The Ultrasound showed good movement and flow through her jugular veins, which proves she didn’t have a stroke (YAY!!!!). Her doctor also had an MRI scheduled for Tuesday since we couldn’t get into the neurologist until May 21. I have the MRI right here and will be giving my Googled translation.
The MRI for Anna’s brain showed it to be an appropriate size for her age, no swelling, and normal blood flow. No mass (brain tumor), mass effect (associated with a tumor) or abnormal fluid presence (hemmorage). The thickening along the anterior margin of the left zygomatic arch extending to zygomaticomxillary suture (along the cheekbone, from about halfway, forward towards the eye socket) is unchanged since the last MRI, measuring 1.7 cm in dimension. Previously described overlying peristeal reaction (formation of new bone in response to injury or trauma) is not appreciated. No additional focal osseous lesion is identified (no new tumors near her eye socket). The rest of the text details items attributed to the process; curved spine due to positioning and intubation, atelectasis (lungs not filled with air) due to normal breathing, or shallower breathing due to anesthetic.
All-in-all the fact that there is no stroke or brain tumor is great. We received the MRI results at her Wednesday appointment and on her Friday appointment got more good news (well, for Anna and Merr)…doctor office visits can be reduced to once a week and no shots until further notice. We will find out what the next steps will consist of after her MIBG (May 19 & 20) and the neurologist appointment on the 21st to see if there is inflammation pressing on any facial nerves causing the left lower lip issue. Otherwise everything is going well. Anna’s hair has grown almost to an astounding length of one inch! She uses her bottle to make interesting formula art on any flat surface she can find, loves going out on the balcony and watching the geese. Next Wednesday it will have been two weeks since her last round of chemo, mom and I will think about her going out and about in the real world.
Okay, I think I better get going now…..my 5 year old is staaaaarving, can’t let that happen. I want to thank you all again for all the support. I want to especially thank Merr’s mom. She has watched the boys so often lately, she almost sees them more then we do.
Thank you again,
SS

Well, yesterday I noticed that the left side of Anna’s mouth wasn’t moving when she laughed or cried, sort of giving her a Sylvester Stallone look. The left side is where her mediport was placed, so we were worried and called the on-call oncologist, who told us it could be a number of things, ranging from Bell’s Palsy to swelling from the surgery pressing on a facial nerve to a stroke (which in all honesty, was the first thought that popped into my head….the kind of thought you spend most of the time trying to push back out). Needless to say, we rushed Anna to the emergency room and she was placed in an isolation room due to her receiving chemo, where the on-duty doctor ruled out a stroke due to the lack of facial sagging (thank god). The on-duty surgeon was called and between him and the surgeon who performed the surgery ruled out swelling pressing on a nerve as they didn’t work close to any nerves that would cause this, and even if they did, it should have shown up sooner.
At this point the surgeon and on-duty doctor are at a loss to explain the loss of movement of her lower left lip, but have let her come home since she isn’t having any difficulty eating or drinking her bottles. The surgeon recommends that we see the pediatric neurologist on Monday when we take her to her oncology appointment, and I have already called the oncologist and left a message for it to get set up (hopefully, they are closed on weekends and her appointment is at 9:30 am). I’m not looking forward to the poking that’s usually involved with a neurology visit, but we need to find out what’s happening.
That’s all I have to give everyone at this time, as soon as I find out anything I will update you all again.
Thank you all,
SS

Hello Citizens of Paragon,
Anna went in for surgery to have the mediport placed at 7:00am on the 29th. The surgeon said everything went better than expected and as soon as she went through an hour for recovery Anna was on her way to her room for her last chemo of this round. The chemo ended up being just an over nighter, which was nice, since we packed up for a three-day stay. She’s home now, walking and talking, still a little sore from the surgery, but her oncologist okay'ed Tylenol for pain, we just double check that she has no fever before we give it to her so the Tylenol doesn’t hide anything.
The morning after surgery and chemo her oncologist came by her room to let us know that they are VERY happy with how Anna is progressing, which was good to hear. Anna will now go in on May19th and the 20th for another MIBG, hopefully we’ll be seeing a bigger reduction in size and that it’s operable now. Until then, it’s back to the twice weekly oncology appointments to make sure her counts stay where they should. As long as nothing unforeseen happens, you may not hear any other updates until we get the results in. All of your support has meant the world to my wife and me. I can’t even tell you all how much we have appreciated it through all this. In the prevalent language of Paragon….TYVM.
SS

Next mission up!!

arc#: 103442
Name: Save the City of Heroes Podcast!
Length: Very Long
Morality: Neutral
Description: It seems the City of Heroes Podcast has been suffering through from one setback to another. It's starting to look as though many have been intentionally created. See what you can do to alleviate this situation.

Hello all, figured I would throw my first published arc out thre:
Arc Name: Man's Insanity: The Beginning
Author: sinnersaint
Publish Number: 93644
Description: Stop the Insanity!!
Length: 3 Missions (Each mission has either an EB or AV, be warned)

Hello all,
Since this is already a pretty late update, I will just paste my wife's posting from caringbridge.com and add a small update afterward.

OK so much has happen that once you read it all you will understand the reason I didn’t get a chance to get to this sooner.

Monday we went in for chemo but her numbers were not up enough so they said Wednesday (bummer but a blessing in the long run you will understand later in the post) so Wednesday we were a go she was awesome in mood and everything it went smooth. The boys came up there Thursday and had a blast at the hospital spring fling got their face painted at the end the boys and I went home. At 1:30am I got a call from Dennis to inform me that Anna’s broveac port snapped and the awesome rapid response team that the PEDS have stopped the bleeding the doctor and surgeons were called in, when I got there in the morning after mom was able to get to the house for the boys. As I arrived I was given the rundown of all the important stuff. The surgeons tried to fix the cord but were unable to so removal was our only option they removed it at 10:00 am Friday in our room with only minimal numbing my poor baby she has the strength that I have never seen before. (if we were on schedule and had her chemo on Monday and it would have lasted 3 days we were supposed to be home Thursday so when the port snapped the 45 min. ride to the hospital from our house with her port like it was Easter would have a whole other meaning to us she would have lost too much blood on the way to hospital. For every roadblock we come up to there is always a reason PLEASE remember that when the road is blocked in your life’s journey.) at 12 noon the nurses tried to put an IV in my angel but she was not going for it after 11 times and 4 hours later the doctors said that was enough she’s been through too much as it is and since she has been stable for 6 hours after the port removal chemo was not going to happen and what we needed was to go home and rest we will figure everything out on Monday at the Doctors Appt. so at 8pm on Friday we walked out of there just happy we still had our family. Monday came and we decided that the port would be put in before her next chemo the week of the 27th. Tuesday she wakes up with a fever and back in the hospital we go and thanks to Nurse Melissa being AWESOME and Anna not feeling well the IV was done the first try! The doctors believe that this is a common cold fever and not a bacterial fever but the good news is if she can keep the fever at bay all day Thursday she will be scheduled for another port surgery Friday. We are in room 5309 and will be there for awhile and would love visits to break up the day!

So now I hope you understand the delay in posting.

Love Meri

So, they found out today that Anna has Influenza B and let her come home today. The reason our updating is running behind is that everyone in the house (except Mom, GO MOM!!!) has been sick with either strep throat or the flu. As of this writing Anna is home and still feeling icky, but in good spirits as always.

Hello All,
It’s been awhile since I updated you all on Anna’s progress, but I have been trying to keep it down to after-chemo updates…..I’m sure no one wants to hear “She’s doing good, no new news” everyday.
Anna had her before chemo doctors appoointment on 3/5/09 and they felt her neutraphil (sp?) count was too low for the chemo. Her count was 550 and the docs want it to be at least 750 so it doesn’t bottom out after the chemo. Also, the doctors told us at her previous appointment to stop giving Anna her daily shot, as they wanted her counts to go up naturally. We scheduled another appointment for 3/12/09 and her counts were still a bit low, 720.
I should let you all know that because her counts were low doesn’t mean she was feeling sickly at all, in fact, Anna has taken her first steps. Just a few, mind you, and she can do more when I hold her hand and walk with her, but yeah….walking. She seems to be favoring her right lag a bit, so we let the doctors know and they scheduled Anna for x-rays from the hips down to see if anything is causing this. She also has started climbing, which is bad. The day before her next doctors appointment on 3/16/09, she climbed up on the couch and fell off the side and bonked her head.
On Monday, 3/16/09 her counts were 1,240, so she was able to be admitted for chemo treatment. The wife and I packed for our usual 3 day stay, even packing the coffee maker since most of the money we spent there is at Starbucks (which neither of us really prefer). On Tuesday morning the doctor came into the room and asked what we thought about going home….so cool, only an over-night stay this time. YAY HOME!!!
Anna’s mom has to start giving Anna her daily shots again, but aside from that, Anna is doing well. Before she went into the hospital for chemo, her cousin had his first birthday party, and since it was a beautiful day, we decided Anna could go (she has only been allowed out of the house for doctor appt’s and going with me to take my 5 year old son to school, and she stays in the car for that). She had a blast, poor baby has got to be suffering from one of the the youngest instances of cabin fever.
That’s the update so far, Anna is doing well and smiling a lot. Thank you all for the thoughts and prayers sent her way so far, it seems to be doing so much for her,
SS

IMO, if it isn't bad news, it's good news to me

Hello Super-Citizens of Paragon,
The MIBG is done and in my hands, I was expecting something a little more substantial then what I have, but from what Anna’s oncologist tells me, the test doesn’t do exactly what I thought it did. I was under the impression that the test actually measured the chemicals that the tumor puts out and that would be compared to previous tests. What it actually does is just take pictures of whatever the radioactive material they give her gets to light up under their equipment. They then compare it to how much lit up on prior tests.
The test basically agrees with the MRI, and also says that although the left orbit and left adrenal gland show persistent activity, it is less than the previous MIBG and there are no new hotspots. The oncologists and surgeons agree that Anna should go through another 4 rounds of chemo and then re-test with the MRI and MIBG. The first of the four runs was finished on Saturday; I just wanted to wait until after her first doctors’ appointment afterward so I could get the test results.
Thank you again for all thoughts and prayers sent Anna’s way,
SS

Hello All,
I know you haven’t heard from me about Anna in awhile, so here I am. Last week Anna went for her MRI and this week was two days for her MIBG. The results from the MRI are in my hands, the MIBG will probably be within the week.
The MRI agrees with the previous ultrasound that the large mass is smaller, now measuring 6.7x7.5x5.4 cm, down from the largest measurement being 10 cm. it is still wrapped around several blood vessels and arteries, so the surgeon does not want to go in and remove it himself. The mass is still pushing against the psoas muscles (muscles attached to the vertebrae, running down the hip, used in lifting the leg ) and is still displacing the left kidney, but to a lesser degree. It is also affecting the spleen and her pancreas, but no lesions are visible. The encasement of the aortal artery shows improvement and there isn’t any extension into the spinal canal. It extends into the porta hepatis (a small fissure that runs through the liver), but they cannot tell if there are still lesions or new tumors on the liver until the MIBG results are in. She showing signs of bibasilar atelectasis, which means that the lower portion of her lungs isn’t getting any air, from the previous surgery scar. There are still lesions on her liver and bones in the area, but they aren’t able to determine if these are active tumors or dead and healing lesions, again, they need to get the MIBG results.
So, we spoke to her oncologist, who spoke to her surgical team, and their opinion is that they cannot go in to remove the mass. However, there are two surgeons who specialize in this type of situation. One is close by to us at Children’s Hospital in Detroit, the second is in New York. The surgeon is going to be talking to both specialists and decisions will be made regarding whether we continue with chemo to try and make it smaller still or whether we need to see either the surgeon in Detroit or New York? If we need to see one of the other surgeons, should we do another round of chemo instead of sit on our hands? Again, a lot depends on what the results of the MIBG tell us.
I would love to put the fancy little blue lettered hyper links to definitions for all of these (trust me, I was flexing my Google muscles through it myself), but I don’t know how right now, I may attempt to learn for future posts.
Well, that’s the latest update, some good news, some not as good a news as we hoped, but still not bad. We aren’t sure how we would swing a trip to New York, but if we have to, we will find a way. When the results from the MIBG come in and the surgeons review them, I will be posting again. On the plus side, Anna went to her weekly doctor’s appointment yesterday, and the oncologist says her blood counts are better then his.
On that note, all four of my typing fingers are sore now, so I’ll be posting again later. Thank you again for all the positive vibes being sent her way, her mom and I appreciate the beyond words,
SS

Hello All,
Since it seems to take me a couple days to put up an update, trying to get the info and wording just right, and right now I'm only home every other day, I am just going to swipe my wife's update on Anna's caringbridge website. Hope this doesn't make me look lazy, she was just faster then me.

Season’s greetings to all,

We have hit a small bump in the road Sunday the 28 at 4am Anna woke us up with a fever of 101.4 so we rushed her to the hospital and she was admitted right away and administered the antibiotics with culture tests drawn out of both catheters and her vein on her head (she was crying so hard and it was popping out they jumped on it and they said it was the easiest vein LOL) the cultures came back and she was positive for a Catheter-Staph Infection NOT MRSA but she is on the “Last Resort” antibiotic Vancomycin because they don’t want to waste time with the others that may or may not work. The infectious disease doctor said it’s common in cancer patients but he is still extremely cautious because it is in her bloodstream and this is very serious and even deadly when the bacteria moves into the bloodstream. This can lead to infections in areas like the bones, lungs, heart, blood and central nervous system. We will be in the hospital for 10 days at best, indefinitely at worse, and there is possibility of the brovac catheter having to be replaced but we are not even thinking about that, the meds WILL work. They are being positive that she will still start her 4th round of chemo on the 2nd as planned. Trying to keep everyone in the loop! Love to all!

P.S. Update to the update....so far Anna's follow up blood tests show negative for the infection now, and have for a couple days. She hasn't had the fever return since being admitted and given Tylenol and the antibiotics. She is recieiving them around the clock, even through the chemo, which will start tomorrow.

Well, that's what's going on so far. She is in good spirits and is playing peek-a-boo with daddy. Right now, you couldn't tell that she even had a fever. I will more then likely be posting an update to her chemo a few days after it is finished.
Thanks again all, for all the thoughts and prayers
SS

Hello All,
Anna got home Saturday from her third stage of chemo. This round was a three day-er. For the most part, everything went well, she stayed in a good mood, still fought the nurses during the dressing change over her Broviac (sp?) Port , the only thing negative to report was that she was blowing out diapers left and right due to the chemo and the few days of severe nausea since she’s been home, but her meds see to have brought that down.
Anna and daddy did our laps in her little car and the stroller at bedtime, so many of the nurses know her, she has to stop and say her hellos a few times a lap . Starting tomorrow she needs to start getting her daily shots again and her next appointment is on Thursday. She needs to go in for another MIBG and CATscan in the next week or so to see how things are progressing. Since the ultra-sound told us there was a 20% decrease in mass, I am hoping for even better news from these more “official” tests.
Thanks for all the positive thoughts, prayers and energies, I can’t tell you how much we appreciate them all,
SS

Hello All,
Not much news to report today. Anna was supposed to go in for her 3rd stage of chemo today, but after the doctor checked her out, he decided to hold off until Thursday due to her on again, off again cold.
On a positive note, her blood counts are still good and she can still go without the daily shot. That makes Mom as happy as her, I'm sure.

Hello all,
Anna had another doctor's appointment today and it was good news all around. We let the doctor know that she spent a considerable amount of the other night being sick and that her appetite seems to have gone down. She has also had BAD gas for the past three nights....BAD gas....(did I mention it was bad? The girl could clear out Wentworth's), unfortunately, it's also painful gas until it passes. The doctor ordered up an ultrasound to make sure she wasn't blocked up somehow. She wasn't, the ultrasound just showed ALOT of gas......it also showed that the main tumor has gone down approximately 20%. Also, all her counts looked so well that the doc cleared her to go all the way until next Tuesday without having to get her daily shot. So the cool part is that she gets to go through her birthday without getting poked. Her b-day is Thursday, so I keep telling her how we're having a huge feast for her birthday.
I wanted to say thanks to everyone for their thoughts and prayers, and a special thank you to Chooch and Viv at http://www.cohpodcast.com for giving so much of the pod time in episode 40 to Anna, the wife and I were quite weepy while listening to Viv.
As always....thank you all so very much,
SS

But.....but....I've already deleted my armory

* Group Name: SinnerSaint's Lair
* Server: Guardian
* Side: Hero
* Approximate Size/Cost: 8x12 / +9,000,000
* Anything else pertinent: My armory....so sad, so sad

Hello Heroes, Anti-Heroes and Villains of Guardian,
Anna is back home from her 2nd stage of chemo. She is doing well, aside from a few episodes of gagging, which I assume is from the somewhat expected side-effect of nausea. She is in very good spirits though, smiling and crawling everywhere. She waved good-bye to all the nurses in the pediatric wing on her way out. Many of which know her by name as we stroll the halls.
Unfortunately, she has to go back to getting her daily neupogen shots, no matter what her blood counts are at her doctor’s appointments. She started losing her hair in small clumps about 4 days ago, which had Mom and I feeling fairly bad, probably as it’s the first visible side-effect of the chemo. Her eye lashes have started to fall out as well. Mom is hoping her hair comes back as her hair color……and curly. Her appetite seems to have diminished somewhat, but it seems like it does that for about a day after a stay, I think it may be due to the IV fluids, she has usually starts eating better by the next day on previous stays.
Back to the plus side of things, we had to get her a new car seat, since she has outgrown her old one, and she LOVES being able to see where it is she’s going rather than the car ceiling for an entire trip. She crawls around well now and has started to pick herself up to a standing position as long as she has something to lean on.
Well, that’s about all the news that I have for you all now. Keep all the good thoughts flowing, so far they are working wonders.
Thank you all so very much,
SS

Base Repricing

1) How will the repricing of bases affect you personally?
It will allow me to create a MUCH larger base for my SG......MUCH larger
2) Will you dismantle your base to gain the additional prestige from the repricing?
As it stands, that's what I would have to do. I would have liked to keep my TP room, but the difference in price alone will make it necessary for me to dismantle it.
3) How long would this process take you if you were to engage in this practice?
Well, if you mean to just dismantle the current base....the armory will take the longest, since it is filled with vet reward weapons.....an hour or so for that room alone...the rest can be torn down in minutes.
4) What are the positive and negative concerns regarding repricing?
I have absolutely no negative concerns regarding the repricing.
5) How will this feature affect you long term and short term?
It will affect me the same either way, now and in the future I will be able to do more with what the SG earns in prestige.
Base Salvage Exchange to Invention Salvage

1) What is the negative effect on your base for this feature implementation?
a) There will no longer be salvage "just for the base". The invention salvage is just too universally needed.
b) As near as I have been able to tell, the Brainstorms are just about useless. I converted nearly 300 pieces of salvage and components over to brainstorms on test, and was able to craft exactly ZERO porters.
2) What is the positive effect on your base for this feature implementation?
None that I can see.
3) How long will it take you to adjust to learning this new system?
No time at all, just a matter of using different ingredients for the same items.
4) What side effects to this system do you currently see from transitioning the old to new system?
a) Invention salvage used for bases will be much costlier, influence-wise, to obtain from WW.
b) The storage rack for the base salvage is horribly insufficient. 30 pieces per rack seems unreasonable to the extreme. Consider this: no base is allowed more then 18 storage bins OF ANY KIND. Yet, at this moment one base salvage bin will hold 2,500 items. It would take over 83 storage bins holding the 30 items planned for this system to hold what ONE bin currently holds.
c) Invention salvage will be "borrowed" from constantly by members building enhancements.
5) What security concerns do you have regarding this change?
I can't tell you how many posts in the past have brought up the need for individual permissions for each bin. Since this has still not happened, the same concerns that HAVE existed, WILL continue to exist.

Additional Notes:

Hello All,
Anna had another doctor's appointment today, and again her counts were very good. She is all set for her 2nd stage of chemo on Monday, which should only be a 2 day stay at the hospital.
I thought I would share a link with you all, it's a site my wife started through caringbridge.com. She has been updating it daily, but since it's her turn with this stomach flu bug, she may miss a day. Anyway, here's the link for any who may want to stop by:
http://www.caringbridge.org/visit/annageiger
As always, thanks for all thoughts and prayers,
SS

Hey Gang,
I realized I haven't put up an update for everyone in awhile and thought I would do it today. Anna had another appointment for blood work on Thursday and it went very well again. The doc said her white blood count is looking very good and we can go from giving her shot daily to every other day.
At home, Anna seems to be making up for lost time in the hospital. She has started clapping, sitting up and crawling. I have even caught her trying to lift herself to a standing position, but she can't seem to decide WHERE to do it, so never does.
Things are going well and she seems to be happy being at home. I will update next after her next chemo stage. Unless she starts dancing or something
Thank you again for all the thoughts, prayers, PMs and in-game tells... I can never tell you how much they mean.
SS

Woohoo!!! I can post again!! Aaaaanyway, Anna had an appt. with her doctor to check her white blood and platelets. Doc said they both looked good and she was even able to go yesterday without getting a shot!
She's loving not being locked up in a crib or carried everywhere now, she started crawling yesterday. The only downside at the moment is that she has a head cold and is teething at the same time, so she isn't eating very much and can't breathe to go to bed. She's only getting 2 - 4 hours of sleep a night.
Other then that, she's doing well, smiling at her brothers and having fun playing around with them.
Thank you for all the prayers, thoughts and everything, it is always appreciated.
Thanks again,
SS

Hello all,
Anna came home yesterday following the first stage of chemo. (I would have written this then, but was too tired for thoughtful typing). She seems to be doing pretty good. The docs say her blood levels before we left were on the low side, but still within a good range. She looks to have a slight loss of appetite, but we’re hoping it gets better the longer she’s home. She is definitely eating more then she was at the hospital, but she was on an IV as well as having formula.
She is picking right back up from where she left off developmentally, the day before she was admitted for all of this, she just started waving. Yesterday she started clapping, sitting up on her own (she probably would have done this sooner, but other the being picked up and carried, she has pretty much been bed-ridden with so many tubes and cables sticking out of her the boys have come to call her Cyborg Anna).
Due to the nature of the chemo, we need to take her temp twice a day to watch out for ANY fever (a low grade fever could be life threatening for her) and she will need to see the oncologist twice a week, every week to monitor her blood counts. My wife is going to be giving her the daily shot to keep her white blood cell count up (my poor wife, I can’t even stand to see someone on the TV getting a shot, meanwhile, SHE watches CSI just for the gory spots, I think).
Since one of the side effects of the chemo is a high susceptibility to infection and just about everything else, Anna will be missing out on the holidays, Her mom and I trading off who takes the boys to the family events, based on who’s family it is. Tonight the boys will be going with Mom to their Aunt’s house for trick or treating goodness.
Normally I try NOT to have photos of my kids on the internet….EVER…..but I thought I would share a picture of Anna at home following her first round of chemo.
http://i43.photobucket.com/albums/e4...d/P1010045.jpg
The main reason I am sharing this picture is to show her black eye. Normally, in neuroblastoma, it shows as two good size black eyes, notice that she only has one black eye, and it isn't all that large at all. We waited four weeks to have her looked at due to it fading and coming back. Please, if your child has a black eye that doesn't seem to go away after two weeks, have them seen by their doctor....and mention neuroblastoma....not every doctor sees it in their career.
Hope I did that right...
Thanks as always,
SS