Christmas

Oh, please, let us get through this.  Let him wake up and see the presents we got him.  Let him show us he is still with us.  I want my baby to talk to me again.  He is so strong, he is still holding on to this life.  I love him so much.  This is not fucking fair.

Quick Update

I wrote this to my care team at Cincinnati Children's.  It got a bit long but I thought it might do as an update on Jr.  Little bugger isn't going anywhere and he is keeping us busy! I jsut cut and pasted this from the email.

Hello all,

Sorry i did not get back to you as soon as i liked.  Here is Junior's current condition in more detail. 

His biggest issue right now still is his secretions. It has caused sudden drops in his pulseox that required some jostling to make him cough.  We are doing suction with a catheter every 1-2 days.  I am giving nebulizer treatments with Xaponex 2-4 times a day.  He is still watching Dora and Diego with his good eye.  It is very bloodshot but he is still actively using it.  We have suspended using the GenTeal drops as they seem to irritate lately and are using LiquiTears a few times a day. 

We are managing pain on an as needed basis with Tylenol, morphine, dilaudid, and Prilosec.  It is still difficult to recognize if he is in pain.  Just today though it seems that coughing is causing pain.  Otherwise, high heart rate and signs of agitation usually are the only indicators of pain.

Now for the big news, we are going to Disney on Wednesday to the Give Kids the World Village through the Make a Wish Foundation.  Dr. Hudspeth at MUSC was a huge advocate for us and things were rushed through very quickly.  It is a seven hour drive from Charleston and we are preparing like crazy here.  Mollie our most awesome hospice nurse is a great help in this.

So anyway, i attached the labs from Thursday, they will be drawn again on Monday.  Please contact me or Mollie Huskey if you have or need more info.  I miss you all and i promise i know the situation that we are in right now and coping the best we can.

Ivie

Tough little guy

On Thursday, we arrived at CCHMC for clinic, in record time I might add. The team, onccologist, fellow, nutrition, coordinator, and social worker, and Pastor Sue (whonactually waan't there but came the next day), so we decidedon a course of action to keep Jr comfortable and with us for as long as possible. Goodbye feedung tube and hello TPNs. Yeah! Well, that nightvhe aspirated and things went very badly, siezure and into ICU with no guarantee that he would recover, and this could be IT. So after a long Adavan nap, the little bugger wakes up and is fine, a bit better than fine due to the ectra fluids.
So, how many more times are we going to go through this, not for awhile I hope. I am going to contact Make-A-Wish in SC on Monday, this little guy needs to see the mouse and god knows so do the rest of us.

No clue what to call this post.

Worst possible news.  The cancer is back and it is untreatable.  We are going to Cincinnati tonite to CCHMC to get him ready to live the rest of his life.  Oh my god, how can this happen? 

Any of you can come and see us this weekend, text, FB, or call to let me know.

He is such a good boy.

Happy Birthday Jr!

I know it's been a long time since my last post, but we have been home.  Jr is doing wonderfully.  Today was his birthday, he is 3 years old.  I cannot not even imagine that just 7 months ago, we were faced with the possibility that this day would never come. 

So some things that have happened.  His pheresis cather was removed and replaced with a PIC in his arm, much less obtrusive.  He has been off TPN (total IV nutrition) for almost 2 months.  His MRI and LP came back with no sign of tumor.  He eats almost constantly and is growing hair back.

And last but not least, he is 3 years old, in every sense of the word.  With all the joys and struggles that come with it.  His time in the hospital where someone was there whenever he made the slightest moan or peep has created quite the little control freak.  We are lucky that he is so easy to please. 

We are starting proton radiation therapy next week in Bloomington, Indiana.  It is about 3 hours away, so once again the family will be scattered.  A big shout out to Nana who will have the Logan and Lukas for a couple of weeks up in Michgan. 

Please pray the side effects are small and the results big!

Link

I actually had the courage tonite to read about other parents ordeals with this type of cancer.  I found Caiden.  He has gone through an almost identical treatment regimen. His site is fortheloveofcaiden.blogspot.com,  he is so lucky to have a mother to put in so much information.  Her blog is what I aspired mine to be like.  Please include Caiden in your prayers.

Just a little note.

He had his MRI and Lumbar Puncture last Friday.  They cannot find any cancer cells.  I am so crying right now.  He is currently CANCER FREE!

Last Round...Hopefully

We were admitted last Friday for our last round of chemo with stem cell transplant.  What it means for now is that there is no more scheduled chemo and we can hope that the MRI will show no cancer.  If it shows nothing, they may do a lumbar puncture to see if there are any cancer cells floating around in there.  That is the way I understand it at least. 
So if there is something found on the MRI or LP, we may be headed for radiation.  But reguardless, at least two good things are going to come when we are done with the transplants.  First, we are going to be home for at least a couple of months, I think.  Second, his hair may start to grow back! 

I've got some pictures I will be posting later on.

This is how we feel about cancer

FUCK CANCER!

Going home

So we are blowing this popcicle stand in the morning.  Sorry, I would have posted more, but really nothing exciting happened this time.  If anything, this was a breeze.  We are getting out two days earlier than last time which is awesome.  So we will be home until April 1, I think.  The boys also have off school for spring break the last week of March so if anyone wants to come and visit, (Addie, Holly, John), nows the time to do it. 
Jr is doing great, when we were admitted this time, they gave him dexamathasone which had interesting side effects.  First, it made him into a 15 yr old girl, drama, crying, moody, loopy.  Second, he ate.  For 3 days, there was nothing he would not eat.  It was great, awesome.  He is also taking his pacifier again.  He has tapered off but I am sure it will pick up again once we get home. 
Yippy Skippy!

Finally a post

I'll betcha you didn't even know you were wondering what stem cells looked like.

I do not know what kind of face Jr is making at that moment, I am pretty sure he was not crying.  Stem cell transplants do not hurt.  They flow in by gravity over about 15-20 minutes. 
The next pic shows the apparatus they go in through.

Montenegro? Really? New viewer stats.

United States 637

Germany 36

Canada 21

Belize 20

United Kingdom 19

Netherlands 11

Croatia 5

South Korea 4

Slovenia 3

Montenegro 1

Not gonna jinx myself

We are supposed to leave in the morning.  One issue up in the air is his feeding tube.  He has thrown up 2 NJ tubes and 2 NG tubes since Thursday.  These are the tubes used for natural feeding going into his stomach through a tube down his nose.  He also gets intravenous feeds called TPN, he can get total nutrition through this method but the tubes are better because it keeps his gut working.  So, without the tube he will drink a bit and eat a bit, not enough to sustain him but enough, in my opinion, to keep his gut working.  The TPN can take care of the actual nutrition while we are at home.
Then there is the G tube, this is a tube that provides natural feeding but is placed through the stomach wall under anestetic.  It is about a 3 day inpatient procedure.  One of my issues last Saturday was that I wanted to get this scheduled so there would be no delay this week in getting it done.  Well, the doctor cancelled it for some reason. 
They had their chance, if they think they are going to get me and Jr here for 3-4 days during the 10 days before our next scheduled chemo, they are nuts. 
No tube, means a happy guy, he hated it the whole time he had and i say good riddance to it.

Guess What

So guess what, I was skipped on rounds this morning.  I sat in this room for 3 hours waiting for rounds to find out that rounds were done and I had been skipped, so ticked.  I've got things I need to know, there's the GJ tube that needs to be scheduled for next week, his counts are going up and I wanna get out of here.  I found out that there was some sort of situation that families could not be out in the hall for rounds, bull, no one could come and tell me?  RRRRRR!
So finally I talk to someone, tell them what I need, off they go, time for lunch.

In front of the elevators.
I see a mother our ward and she has everything packed up to go home. 
"How long do you get to go home for?", I say.
"Forever", she says.
"OMG, that's great, congratulations!"
"She died this morning"

Jesus Christ, like I don't even know where I am, her child died today, someone else's child could die tomorrow.  I am in a hospital that treats really, really sick kids.  My child is really, really sick.  Jesus Christ.

A pic

Just in case you haven't seen a picture of the most precious toddler on the planet in a while, if ever.  Here he is, minus the NJ tube which accidently got pulled out yesterday morning.

Waiting

OK, once again his counts are bottomed, for real this time, he feels good, I feel good.  Can we please go home now?

Pain

So Jr got some of his cells back, blessed by Pastor Sue here at the hospital.  She is my go to person when things are bad, when I am feeling depressed.  She is also our bubble connection.  Junior is usually happy to see her, first because he knows that she is not going to come and poke or prod, second, her unending supply of bubbles and the will to blow them until he is satisfied.  Bless you Pastor Sue!
The cells went in with no problem, very anti climatic since his counts still continued downward and we do not see any improvement from it.  Now his counts are bottomed, the first fever is here. 
Pain meds.  He is now receiving pain medication from the sores in his mouth and throat.  He feels terrible.  We started with morphine (scary for me) but have decided that it makes him nauseous.  He is now getting dilaudin, another opiate, seems to be working better. 
It was so nice outside today, this whole trip has not been so bad when the weather was wintry and cold, nice weather makes me want to get him outside.  Depressing.

There and Back Again

We are back at the hospital for the long haul.  3 courses of chemo with a stemcell transplant, 1 course/transplant every 28 days.  3 months in the hospital, egads.  We were home for almost 2 weeks and it was wonderful.  Sorry I didn't post but I decided to be greedy with my joy.  Amazing, I can behave anyway I like right now, because I have a child with cancer. 

So, Junior is walking pretty well again, he had such a good time at home.  I am remembering when this all started and we were in the ICU, still in shock, and Manfred and I told each other how grateful we would be when he was back to himself, being a little monster/destroyer.  Well, we had to remind ourselves of that vow this last week.

So now to the technical stuff, his chemo this time is carboplatin and thiotepa for 2 days, a day of rest and then the stemcell transplant.  The rest of the time in recovery, I am expecting more of the same only worse.  This chemo is much stronger than before and kills everything, so basically, without the stemcells, he is getting enough drugs to kill him once a month for 3 months, lovely. 

Oh sorry, how could I forget, the results of the MRI!  Well, it seems that we are doing well.  The last chemo not only stabilized the tumor but there was some reduction!  That was great news, a hope giver.  It is possible that after this course, it may be gone, but if not, we should be eligible for radiation therapy since he will be almost 3 years old.

Next post in a few days or so after the chemo.

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.