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.

Day One - Chemotherapy

Chemo starts today.  His central line was put in yesterday which is how they will get the chemicals into him.  The side effects are vast, the prognosis, dire. 
He is actually doing quite well right now thanks to the hyperfluids they have going through him right now. 

AT/RT!  Look out!  We are coming to get you and destroy you!

Missed it by that much

Maybe we will get home tomorrow.  Jr. threw up earlier and it looks like we need to stay another night, just to be sure.  Oh well, still hopeful.

Going Home!

We finally get to go home today.  Waiting for my homecare supplies to be delivered to our room.  I will be starting my new role as a mother of a child with cancer.  I have been taught how to flush a PICC line, 2X a day with Heparin, Keppra orally 2X for seizures and bathing stitches.  Glad Press and Seal!  Whoudda thunk?
Looks like chemo will start next weekend, sigh.  Please keep sending your wishes and prayers!
I am thinking we will use a stroller at home for him to hang out in while we move about the house. I was considering like a large walker or small wheelchair, but the stairs.  He walked yesterday day,  a few shaky, assisted steps.  I guess I was thinking he forgot how or was too weak but I think he will get moving again quckly.  Especially when he has his big brothers to boss around again!

Two Weeks

It has been two weeks today since this nightmare started.  Jr. is a champ, sometimes I think he is doing way better than mommy and daddy. 
His shunt was installed yesterday and the tubes coming out of his head were removed.  It is possible to feel the tubes under his skin running from the back of his head, down his neck and chest and eventually ending in his stomach where the excess brain juice will be absorbed by the body.  His entire head was shaved giving me a glimpse of what he will look like when chemo starts next Thursday.  I need to find some caps for that tender little head of his. 
Chemo, not looking forward to it.

Day Eight and some of Nine

We moved up to the 7th floor out of the ICU and into the neuroscience ward.  Chillin for the weekend and waiting for Monday for oncology consult.   Thanks to my wonderful and outstanding husband who has found a wealth of information on recent studies for Jr's very special kind of tumor.  It just happens that much has been studied and documented in Germany, and hence, written in German, luck?  I will not tell you what the name is of the tumor for two reasons.  First, you will look it up and find it on Wikipedia and see the bummer of prognosis that it gives which is almost a complete generalization.  Second, because I cannot remember the name, I left the paper that I wrote it down on at home, I know, flimsy excuse. 
I went home last night and stayed allnight until this morning.  It was very hard to leave and I was very anxious to get back, but it was so wonderful to hang out with Lukas and Logan that it more than made up for it.  Logan, being 12, actually made it seem like he was happy to see me which was momentous and I thank him for it. 

Day Seven (cont'd)

Well that was awful, the extubation.  Kinda almost like being born, he is good now though.  Dee-dee in the mouth, one in the hand.

Day Seven

He's starting to wake up finally from sedation.  I can tell that he is ready.  Next comes the extubation which does not sound like any fun at all.  But my baby is going to be awake and I am so excited.  Also he is not going to be able to eat for a few more hours and since he has not eaten since Wednesday has is going to be pissed.  But we will get through and I will stuff him like a turkey. 
So now we get a couple of days possibly before we get the diagnosis about the tumor and the action plan for treatment is decided on so I get to be a mommy for him while he recovers.

Please keep sending prayers and good thoughts!

Where we are now (cont'd)

So right now, Jr is sleeping or rather sedated because he has a breathing tube in.  This isn't related to the tumor.  He had to have a post operative MRI this morning and they were keeping him sedated since the surgery yesterday.  The sedative was not doing its job so they decided to intubate him so that he would not move during the MRI.  Unfortunately, he threw up the tube and possibly something may have blocked his airway causing his left lung to collapse.  This was a bit more than scary when he came back to the ICU room with a breathing bag and several people working over him.  So all said, they had to re-intubate him and are keeping him sedated until that left lung is fully inflated again.  I am waiting on the results of the second Xray now to see how things are moving along.
Disclaimer:  I am not a doctor, I am reporting this information in the way that it makes sense to me.  If something doesn't make sense you are more than welcome to ask for clarification, I will do my best. 

Good god, they are going to do suction on his breathing tube again.  I hate this and so does he, it sounds terrible and I'm sure it feels worse. 

Where we are now.

Day Six - Six days ago we found out that my two and a half year old son has a brain tumor.  We have begun a journey that no one can prepare for.  I am not sure how this blog is going to go but I am going to use it mostly to keep freinds and family updated on his condition and to put some of my own thoughts and concerns down.