I'm coming home! Never posted from Sunday!

Well looks like they are happy with my recovery. I'm on my way home! Yay! I am feeling better, mommy can tell. I started throwing everything out if my bed.

Up and at 'em

There is no rest in this place. They've got me up and walking, even though I just want to sleep in bed. Mommy and daddy took me to the playroom. Daddy put dinosaurs in the barn. Silly daddy.

Great news!!!

The surgery is over and they were able to preserve both adrenal glands. He may still have issues for a couple of months with adrenal function, but they should get better with time. They were able to remove 90% of the tumor, which is great. The surgery was more difficult than the surgeon anticipated, but he is very happy with the outcome!

Good news

Surgery is about 1/2 done. The surgeon was able to preserve one adrenal gland and is now working in saving the other.

So far so good

So far so good. No details yet just that his is safely under and they are working on him.

I'm going in for surgery

The surgery is about to begin. They have ordered me to turn off all electronic devices and return my seat to it's full upright position. Oh no wait that's for an airplane. Yeah well anyway, I got the giggle juice and will soon be out cold. Because I will not have access to my phone I have authorized mommy and daddy to post updates on my behalf.

Thank you

Day of thanks #25. Today I am thankful for all of you, friends and family old and new. I have been totally blessed to have your support, prayers, kind thoughts and words that you have all given us during this difficult time. You have all renewed my faith in humanity and the good in people. I am touched that so many of you care and help in whatever way you can, even those of you who I haven't seen in almost 20 years. You are all amazing friends and for this I thank you all!

And the answer is...

So we finally met with the doctors down at chop today. And the answer is, I will need surgery to remove the rest of the tumors. Yes, it looks like there are 2 tumors each growing on one adrenal gland. The chemo did work to shrink them but not enough. The doctors are hopeful that they will be able to remove the tissue while keeping at least one of my adrenal glands but as you know with me, nothing is garenteed or routine. On Thursday I will go under the knife for a minimal 5 hour surgery.

A big day tomorrow

Tomorrow is another big day. I head back down to chop with mommy and daddy to meet with all of my doctors down there. They will go over my test results and talk with us about the next step. Wish me luck. 😷🍀

Platelet transfusion

Today I am back at morristown for a platelet transfusion. Hopefully I shouldn't be here for long. On the bright side, this should hopefully keep us out of the hospital for the holiday weekend.

And it all comes down to this...

Well, tomorrow is the day. I will have an MRI and an MIBG done to evaluate the size of my tumor. This will help the doctors determine what the next course of treatment will be. A miracle would be that the tumor shrunk a lot and I'm done. But the realistic best case scenario is that the tumor shrunk enough so that they can remove it with surgery and save one of my adrenal glands. Pray for me.

Appologies

First I must start by apologizing for all of the late posts. I guess there were issues with posting from the hospital. Mommy was wondering why people were saying there was nothing on the blog. 

Anyway, tomorrow is the first if two big days for me. Me and mommy head back down to CHOP tomorrow for the first of two days of tests. Tomorrow we will know nothing. They will just be injecting me with radiation. Wednesday is the big day when they will do the scan to see if all of that nasty chemo worked. Pray that the results are good.

Back in the hospital from 6/22

I'm back in the hospital again. I ended up back here before 6 AM again. I have a fever and vomitting. But I think I'm still puking from the chemo. Not sure what is causing the fever though. It's gonna be a while.

Fourth round of chemo never posted from 6/18

I am at the drs waiting to start my fourth round of chemo. Mommy is very superstitious and does not want to jinx anything, so I am not going to say that it will be my last. If all goes well I will finish chemo on Friday, have a week off, go down to chop to be reevaluated, meet with the oncologist down there the next week, then maybe have my surgery the week after. Then I can slowly start to become acclimated to normal life again.

In the hospital for another holiday post never published from 6/14

In my true fashion I needed to be in the hospital for another holiday. Well maybe not quite. I was admitted to the hospital early yesterday morning, but I might be coming home tonight. So daddy might get lucky and have me home for Father's Day. I did miss the walk for The Valerie Fund. They are the cancer center that I go to. So maybe that counts as a holiday, since it only happens once a year. We took some pictures in my hospital room. I'm not very happy to be here. I wish I was at the walk.

Chemo graduation

God willing, today will be my last day of chemo. Mommy says I'm graduating and she couldn't be more proud. This marks the beginning of the end to what will hopefully be a successful fight with cancer. I still have more tests and surgeries to go, but this is the light at the end of a very dark tunnel.

Update

Ok so maybe I'm getting the hang if this chemo thing. I don't want to speak too soon or jinx anything, but I am now 9 days out from the start of my last chemo and still sleeping in my own crib. My counts typically drop 7-10 days after and I start to get sick or run a fever, sending me to the hospital.

I am scheduled to receive my last round on June 16th. I will be going back to chop in the beginning of July for a reevaluation and to meet with my oncologist down there a week later. Hopefully they will have good news and all of this suffering wasn't a waste. Best case scenario, they will then be able to remove the rest of the tumor with surgery.

Chemo, part 3

Today is the start of my third round of chemo. This means I have just passed the half way point. I know it's not Wednesday but today is Hump Day!!! I am completely finished with two rounds of chemo and I have two more to go, including this one. Wow I feel good. I'm finally starting to see a light at the end of the tunnel. This is another three day chemo so it may knock me on my butt again. I will be in the hospital tonight, stay for the drugs tomorrow, stay home tomorrow night, then finish the drugs at the clinic on Wednesday. I'll also be back on Thursday for a shot. Busy week.

Have you ever seen bald so beautiful?

Check out my new do. I'm rocking the bald. Doing better my counts are up. Getting ready for my next round of chemo on Memorial Day. 

The Jets came to visit 5/16

While I was at the doctors two of the Jets came to visit. I got an autograph and a picture with them. Daddy will be jealous.

I'm home again

I came home yesterday and boy it felt so good. First we went to grandmas to get Julia. I saw my cousins there and we played for a bit. Then I came home and napped. Boy did it feel good to be in my own crib.

Finally, some sleep

I'm finally getting some sleep tonight. I'm very restless and tossing and turning but at least I'm sleeping. Mommy arranged it so that they bother me less. They also gave me some Benadryl so that is helping me too. Yay sleep, now if only mommy could get some.

Back in the hospital

Yesterday a spiked another fever and was admitted to morristown again. The tests can back for human metapneumo virus. This is what I had a few weeks ago that caused my pneumonia. They're not sure how I got it again or if I ever fully recovered. At any rate I'm back imprisoned.

Chemo round 2

I'm in the hospital getting hydrated waiting for my next round of chemo. I know it sounds wierd, but I glad that I can finally start this next round. The sooner I start the sooner I finish.

Morristown

Today I met with my newest oncologist from morristown. They all seem very nice and the suite looks much nicer than Beth Israel's. They did bloodwork and my levels look good. Right now it's a go for my second round of chemo tomorrow. As long as everyone can figure out what I'm getting.

No oxygen!!

I made it through the whole night without oxygen. I'm definately feeling better all over. Not sure when my next round of chemo will be but I do have an appointment with my new oncologist on Thursday afternoon.

Happy Easter!

Yes I know Easter was last week but since I was in the hospital we celebrated it today. I can't even say that we decided to celebrate orthodox Easter because that was actually last week too. The Easter bunny gave me a big Easter bunny Mickey and a mini Easter bunny Mickey and Donald. Here are some pictures of me and my girls.

I'm home

They let me go home yesterday after mommy reassured the doctors that I still have oxygen and a pulse ox at home. I needed the oxygen to sleep last night but did not need it during a nap today. Let's see how I do tonight.

Rockin' pneumonia

I've got a case of rockin' pneumonia. I'm rocking out in here with the music therapist while I'm fighting pneumonia. I'm on 2 liters of oxygen right now. They think it's all viral which means there is no medicine they can give me to fix it, even though they are just in case. They are giving me breathing treatments every 2 hours and another round of high dose steroids. I just have to wait, rest, and let it run it's course.

Still in the hospital

Yes I am still in the hospital and it doesn't look like I will be home any time soon. I was supposed to go home today, have one night at home, and then head to Beth Israel for my chemo tomorrow. That has changed. I'm not exactly sure what the new plan is. All I know is that last night it got harder for me to breathe. I started breathing quickly, so mommy checked my oxygen levels and they were low. She called the nurse and then the drs came too and they put me in oxygen. I was doing better. I did have a tough time breathing yesterday but it got better. This time is not getting better so quickly. So now I am on oxygen and getting more respiratory treatments. I just want to go home. 😕🏡

I'm tired

What a long couple of days. I am so tired because all of these alarms keep going off and waking me up at night. What does a guy have to do to get some sleep in this joint?

I'm back

My home nurse took my temperature tonight and I was burning up. I had a fever of 102.7. This is very high for me especially with chemo. So off to the ER we went again. They did a chest x-ray that was fine. Then they tested me for the flu and RSV. Both negative. They can't figure out what is going on. Good news is my fever went down with Tylenol. They admitted me and I'm at St barnabus again. Looks like I'll be here for at least another 2 days.

Back in my own crib

I'm home!!! Just got discharged today around 6. I was so excited to see daddy, Julia, grandma and poppy. I was crawling all over getting into trouble, just like the good old days. Boy it feels good to be home and sleeping in my own bed. I mean crib.

Imprisoned for another day

Just when I thought I was free I started puking again. And now I'm stuck here for another day. Good news is I am feeling better, just not good enough to go home yet.

Back at Barnabus

Yesterday was a rough day. I had diareah all day and started puking again at night. Last night my nurse woke mommy up and told her I needed to go to the hospital. She got dressed and off we went. After a short time in the ER and being treated like a king they admitted me to the hospital. I'm back at St Barnabus where all of my friends are. So that's a good thing. I was really dehydrated and had a few infections brewing. They gave me a big dose of iv antibiodics and hooked me up with some iv fluids. I am feeling and looking much better now.

The sick house

As if all that I am fighting isn't enough now I am sick with something else. I went back to the emergency room yesterday with stomach problems. Mommy was afraid I was getting dehydrated. They tested me for c diff. We are waiting for the results. Mommy was sick yesterday and now daddy and Julia are sick today. 

:(

I'm coming home!

Me and mommy are on our way home after my first round of chemo. I was do excited to see the sunlight I bopped myself to sleep.

My visitors

Yesterday grandma and poppy came to visit with my girl, Julia. I was happy to see them but didn't really show it because I was so tired. I'm not really getting much sleep in this place. They keep coming in to check my vitals and all sorts of alarms are going off all day and night. It reminds me a lot of my NICU days, just sleep whenever you can. Well mommy was happy to see everyone too it was nice for her to get some company.

Chemo

Yesterday they admitted me to the hospital after implanting a port in my chest. It is a direct line that goes to into a vein where they can give me chemo and take blood without using an iv or pricking me. It was hard to do the first time because I have bad NICU veins. I had my first round of chemo Wednesday night and my second round just before bed. Last night and this morning was rough. I was puking a lot but the drs gave me medicine to make that stop. I did a lot better with my second dose.

I'm packing my bags!

Daddy and I had a fall out last night so I'm leaving him and Julia. I asked mommy to pack our bags and take me down to philly.

Truth is I need to go to chop again. We are leaving first thing in the morning. I need to have another surgery to have a port placed. After that they will be starting chemo for 3 days. I will be admitted and mommy will be staying with me. Daddy needs to hold down the fort back home. I will miss him and my girl, Julia.

Things are looking up!

On our way home my doctor called to let us know about the scan. Great news... The cancer is contained! Hopefully tomorrow we will hear about the rest of the results from the biopsy. Thank you all for your prayers. 

Ronald Mc Donald House

Last night we stayed at the Philadelphia Ronald Mc Donald House. I like that place. They welcomed me with a toy as soon as I got there. They even had a nice dinner for everyone. Too bad I don't eat because it looked good. 

MIBG

So now I'm having the most important test. It's called an MIBG. They injected me with radiation yesterday and now today I'm getting my body scanned. Hopefully they won't find any other tumors.

Done with my test.

I'm done with my test and waking up from anesthesia. Still no word on the results yet. I don't need any oxygen anymore. Hopefully I can go home soon.

Mixed news

So here is the most recent news. It has been confirmed that yes, my tumor is cancerous. It is in deed a neuroblastoma. And during the biopsy the dr actually got a piece of the lymph nodes so yes it is in my lymph nodes. Good news is my bone marrow test came back negative, so it hasn't spread that far. This week we will go back down to chop again for another 2-3 days of testing. These tests will tell where/if the cancer has spread anywhere else in my body and how my organs are functions to help the drs decide what type of chemo I will need. Wish me luck and keep me in your prayers.

Surgery

Surgery went well. I just have 4 small cuts. They were able to do it laparoscopically. Waiting for the oncologist to take my bone marrow. Still need to wait a few days to a week for the test results but the pathologists think it is a neuroblastoma. I can't wait to see mommy and daddy and give them hugs and kisses.

Waiting for my tests

I'm back at the hospital waiting for them to put me under for my tests. I should have known this was going to be a bad day. Things never go well for me when mommy wakes me up early and takes me out of the house in my pjs.

Thank god for my iPad and wifi.

A reason for a second opinion

I met with my doctors down in philly again yesterday. Their plan is to just go in do a biopsy on Wednesday instead of cutting out the tumor and an adrenal gland along with it. They are hoping to do it laparoscopically, which means I will just have a few cuts. If they need to the will have to make a bigger cut. This is much better news because it means I will only have to be in the hospital overnight if all goes well. And then I won't be away from my #1 girl, Julia for that long. I will miss her so. So after they find out what's going on they will figure out what to do next. If it's benine then they will just watch it but if it is malignant then I might need chemo to shrink it then surgery it remove the tumor. This is why you get a second opinion.

Wish me luck tomorrow. Love you all.

Happy st Patricks day!

I'm bopping out to Irish music on my way back to CHoP. Heading down to see the surgeon, anesthesiologist, oncologist and get bloodwork done for my surgery on Wednesday. Hopefully I'll know more about what's going on in a few hours.

While I was sleeping

The doctor down at CHoP called last night after I went to bed. Mommy took the call. They finally got the MRI results and after looking at the pictures it looks a little more involved than originally thought. They are not sure if it spread to my other adrenal gland so they are going to do a biopsy first before they take out my gland and the tumor. I go back down on Monday to meet with my surgeon.

NJ surgeon

Today we went to see the surgeon in NJ who would be doing my surgery if I go to Beth Israel. It sounds like he is the cancer surgeon to go to in NJ. Just not sure if I want to do it here. Sounds like I definately need the surgery. It's just a question of where and when. Good news is all doctors are surprised that I have no symptoms!!

A waste of time

On my way back from chop with no more answers then i went down with. The disks that we picked up in the way diwn from Beth Israel were not enough. They are still waiting for all of the images. Hopefully well know more tomorrow.

And the hospital tour continues.

Good morning all. As many of you may have heard i have been diagnosed with a neuroblastoma by an oncologist at Beth Israel. They want me to have surgery to remove the tumor and my adrenal gland. I am taking a trip down to phillie today to get a second opinion from the specialists at CHoP. 

My hospital tour continues. I have wrapped up a the North Jersey tour. For those who are counting this will be hospital #5 on the tour. Watch out i may be making a stop at a local hospital near you.