Venting

Rrrrrrrrr!  We are getting more and more logistic problems from the hospital.  If it's not the home care pharmacy sending a whole case elephant size Ferrell bags, it's radiology scheduling three procedures that cannot possibly be done in the same day because of indicators that cannot not be given toegether.  Today we were supposed to have a GFR, an MRI and a CT scan.  I am not inpatient right now so I had to leave an hour early to get through rush hour traffic to be there by 8AM.  Get there to find that the IV team is 45 minutes late and the CT scan cannot be performed because the indicator does not gel with the GFR.  Add to that, we have an EKG appt in the morning that materialized out of nowhere.  So instead of one clinic at 11AM tomorrow, we now have an oncology clinic, a BMT clinic, an EKG, and a CT scan.  RRRRRRRR!

Going Global

I suddenly have 20 blog views from Belize.  That means I am on 4 of 7 continents.  Just need Africa, Australia, and Antarctica.  Fascinating.

Home Again...Again

We are having a great time at home.  Junior is feeling great and that helps immensely.  I really missed having a kitchen and a fridge.  Junior is still hooked up to his pole 16 hours a day with TPN and NJ feeds but those 8 hours of freedom are priceless.  He is taking some food so his oral aversion is not so irreversible as it seemed while we were in the hospital. 

Good God!

United States 404

Germany 33

United Kingdom 13

Canada 5

Croatia 5

South Korea 3

Poland 1

Slovenia 1

The above is a list with the total views of my blog and where they came from.  Something interesting for a change, I just read through the whole blog from the beginning, good god, that was depressing.  Not even ready to get hysterical tonite, I will save that for next Thursday. 
Which do you think is more interesting?  South Korea or Croatia?

Going Home Again

Looks like we are busting out of here tomorrow for our longest stretch yet.  Don't even ask if we made it until I confirm tomorrow night, hoping I am not jinxing us right now!  We are expecting to be home for 2 weekends with a week in between.  Lots of returning to the hospital for tests next week.  Let's see, audiology test, GFR, MRI, and a CT scan.  We have a clinic with our main oncologist, Dr. Foulahdi, next Thursday to see how the initial chemo went.  This is the big day, please send all of your prayers and wishes that the tumor was either shrunk or stabilized. 

Ho Hum

So we have bottomed out again, the counts.  Only up from here.  We have started the Nupigen shots again.  Yesterday there was alot of nausea and one fever.  So mainly I am here to catch and report throw up.  I brought my own theremometer so I do not have to bother the staff as much. 
Jr has have several CT scans and Xrays to try to find answers to problems of nausea and tachacardia (sp. high heart rate).  I think the worst part of this course is that we are confined to the room while they look for infections.  It takes 2 days usually for cultures to grow so about every other day, they think of something to look for, extending our confinement while we wait to see if anything bad grows.  He really wants to get out of here, I would love to take him for a walk downstairs just so he can see that the world is still out there.

2nd Round

We started the second round of chemo on Friday, no signs of deterioration yet.  There has been some nausea but I think the new nausea regimen is working ok.
Kytril every 12 hours, Adavan every six, Benadryl every six, it works out that he is getting something for nausea every 3 hours.  The Cisplatin has just begun, that is the nasty stuff, we will see how it goes.  I am not looking forward to watching him start to feel awful again.

List of Drugs

A few have been asking about the drugs that he is getting.  Here is a list of the ones I can remember and the ones he is getting now and why they were administered.  I'll leave it up to you to do the research and no guarantees on the spelling!

Keppra - current - for seizures
Flagil - current - antibiotic
Kytril - current - nausea
Adavan - nausea
Zofran - nausea
Nupigen - stem cell booster
Epinepherin - anaphylaxis
Cortisone - transfusion
Benadryl - transfusion and nausea
Zoicin - antibiotic
Prevacid - upset tummy
Protonic - upset tummy
Cytoxan - chemo
Etopicide - chemo
Cisplatin - chemo
Vincristine - chemo
Mensa - chemo

There are more that I cannot remember the name of but all the current ones are there.  Once again, excuse the spelling.

Home and Back Again

We were able to enjoy an entire day and a half at home.  We left Wednesday early afternoon.  Jr was much healthier than when we went home at Xmas.  All of his counts were up and no sign of fever and not nearly as much home care as the last time either, no shots thank god.  He ate, he walked, he played more than he has in the last month thanks to Daddy and Logan and Lukas.  Being home was excellent medicine. 
This morning he had an NJ tube placed. Definition -
A nasojejunal, or NJ, tube is a small tube that is passed through the nose and guided into the jejunum (small bowel). The tube is used for feeding children who cannot or will not obtain adequate nutrition orally.
So after this round of chemo we will begin tube feeds and wean him off the TPN feeds. 
Right now he is sticking his finger in jello and licking it, eating as far as we are concerned. 
We have decided to omit the Vincristine from this protocol.  Nasty stuff that does no good and has the worst side effects. 

Blow in his face?

Tip of the day from one of the nurses.  For children who are impossible to give oral meds to: blowing lightly in the face will help them swallow instead of spitting it out.  Probably distracts them I suppose, I am willing to give it a shot.

So, we made it through 5 days of fever with the help of several antibiotics and anti fungals.  We are now in protective isolation which means that any hospital personnel coming into the room must don the disposable yellow robe and gloves.  The antibiotics killed some of the good bacteria leaving some of the nastier ones to proliferate into diarrhea which not even hand sanitizer can kill.  It also means that Jr. cannot leave the room and that is a bummer because he actually feels well enough to go to the playroom.

His hair has begun to fall out, I was pulling out little chunks last night.  I had the neurosurgeons shave his entire head when they put the shunt in so it is not so distressing.  He is so fair that you cannot see the bare patches so vividly as you would with darker hair.

So in the morning we will have his second GFR which will determine how well his kidneys are working and making preparations for his next round of chemo beginning possibly this weekend.  His stem cells were harvested yesterday and will be frozen until being transfused to help recover from the big, scary chemo to come.

So we are back

We returned to the hospital last night because Juniors tumor spiked to 38.9C. Interesting day so far. A few more meds with antibiotics, platelet transfusion with an anaphylactic reaction calling for a few more meds (epinephrin, benadryl, and cortisone). Waiting now for another hemoglobin transfusion.
Looks like we are here for a bit of a stretch now. I am thinking I will post a list of his current meds later for anyone who is interested, it is least impressive.
He is sleeping right now through a rather nasty rash from the reaction. Almost a blessing that he is so exhausted from all of the other things happening since we got here last night, because if he was awake he would be scratching like crazy right now which might give him another infection he would not be able to fight.
The journey continues...

My Baby is Home for Christmas

We got him home!  Maybe for a day or two only but it is wonderful.  It was sad to see the people that had to stay for Christmas.  He is still on IV nutrition which I am hooking up and unhooking.  The home care techs were here tonite and will be hear tomorrow to supervise, thank god.  It's pretty complicated with the tubes, clamps, doses, pumps, lines, other meds, etc...   But it is worth it.  His counts have bottomed out so we are pretty much quarantined.  The boys have the hands free soap dispenser (as seen on TV) and they are cooperating with the hand washing.

On another note, this experience has already changed me.  I called Al and Addie tonite just to wish them Merry Christmas because I really mean it.  I hope that every single person I know to cherish each other, count your blessings, and just love each other.

Merry Christmas Every One, I love and care for you all!

Moving right along

It's 3am and we are having our first blood tranfusion.  Red blood is on the menu tonite, have that movie, "Love at First Bite"  with that tanned guy in it in my head. His his heart rate was way up because his blood counts were down and his body was working harder to get oxygen.  White blood cells are still OK, starting to learn the numbers of what is normal and so on.
He is done with his first round of chemo, that Cisplatin is a bugger.  He is not really eating at all and is now on IV nutrition.  They tried to put in a feeding tube to his stomach but that did not go so well so we just have to get him eating again.  Very hard to watch him lose weight when he was such a good eater before.  Looks like they will begin harvesting stem cells around New Years and next round of chemo starts second week of January. 
Pray that we get home for Xmas.  Still have not gotten one present for the kids, hopefully tomorrow we will get a few hours away.

Wow, this is a really depressing post.  On the brighter side, the transfusion should make him feel better and he had half a graham cracker tonite.  That's progress and I will take it anywhere I can get it.

How do you stop an AT-RT?

This is an AT-RT from the Star Wars Saga.  Kind of ironic that there would be a Star Wars connection here.  So anywho, there are like a bazillion of these little beasties in my baby's brain,  I think the Ewoks could take one of these things down with a few rocks and some strategically placed logs.

You want me to what?!!!!

Just found out that I will be administering shots of Nupigen (sp) into my precious baby.  Are they nuts?  Besides the line flushing, fluids, mouth care, vitals, now I am going to be giving shots?  Oh Shana, you will be hearing from me on Monday. 
Panic!
Oh, if you know me you will understand that I am not in hysterics right now, maybe a bit uneasy about the prospects but I will choose the home health care over spending Christmas in the hospital. 
Also, first day of chemo is done, we start again tonite at 5:45.  Not so many side affects yet, some throwing up and abit sleepy but he is still wanting to play and eat and drink so that is all good.  Might be out of here on Monday.