We're Home!

Max was discharged from the hospital this weekend and will now be seen as an out-patient everyday this week.   He did really well after removing the epidural and transferring to oral pain meds so that we can administer those at home. He also did really well after taking out all the tubes and monitors. 

We are settling in at home as much as is possible. It's really nice to all be at home at the same time, since it has been two weeks of at least half of us living at the hospitals. Max is doing well and is enjoying being with his sisters and playing with his toys.  He does get really frustrated because he wants to do the things that he use to be able to to and now can't. We hope to have occupational and physical therapists out to our house this week to help us work with Max and baby proof our house again.  We are also having a hard time keeping him hydrated, for some reason the function that controls his electrolyte balance is off.  We are hoping we can get this figured out soon or else we will need to have him admitted again for iv hydration.

Kari and Max will be meeting with all of the specialists that will follow Max to get a baseline of where he is at now before chemo starts so that we can look for progress as we begin treatment .  We should find out more results about the pathology of the tumor, bone marrow biopsies and the surrounding lymph nodes today.  Max's tumor will be discussed at the Tumor board on Tuesday.  Max has two more important tests that need to be completed before staging can be complete.  He has an LP and an MIBG scan on Thursday.  The MIBG will show other cancerous "hot spots"  in his body. Max had a bad reaction to the anesthesia used during his bone scan before we were discharged so we will pray that he can make it through these tests without any problems.  They have decided to wait until Friday to do the chemo to give his little body a chance to heal a little more from the surgery before they knock him down again.  It will be an 8-9 hour infusion through the port in his chest. Again, how do you keep an 18 month old still for 8-9 hours??

Giving Thanks!

Amidst our family dealing with some hard stuff right now, we have so much to be thankful for.  We are so blessed with such caring family and friends. We hope you all had a wonderful Thanksgiving.

Bone Scan

Great news no cancer in the bones! Max is smiling, eating and starting to get tubes out.  Doctors are really pleased with his recovery.  We may even be able to come home this weekend!

Chicks Dig Scars

MAX BEFORE SURGERY...

 

MAX AFTER SURGERY...

Another busy day, we worked with nurses through the night to help Max try and stay comfortable and manage pain.  A blessing is that we haven’t had any issues with any of his vital signs, often when an adrenal gland is removed you can have issues with many organs and automatic functions like blood pressure begin to react. We have been very lucky to have no complications this far.

Other key events today:

-Madison and Molly came to visit Max for the first time today. They met with child life specialists first to play and learn about all the helper straws, band-aids, and other devices that make Max look funny.  Madison did a great job and was prepared and reassured Max that he was going to be ok, little Molly didn’t like to see her best buddy in pain.

-Initial pathology came back on the tumor and confirmed that it was a neuroblastoma, we will learn the final report which will show a lot of the genetic makeup by Monday.

- Max really enjoyed 3 lollipops today.  Bubbles and wagon rides to follow tomorrow. All of these activities help encourage his digestive system to start working.

-Kari and Josh finally came to a decision to move forward on 3 different clinical trials.  This initial consent will allow us to get more tests to help determine staging. We will be trying to look for an oncologist in another state who has treated a patient like Max for a second opinion.  We both agree that we want to stay put here in Seattle so that we can utilize our amazing support system and the countries best neuroblastoma specialist, but hopefully we can find another dr that can reassure us that we are doing the right thing with his treatment or give us a little more information on a plan for treatment.

-We were able to connect with a lot of specialists to setup appointments to help determine his ongoing care.  (Opthamologists, neurologists, neurophyscologists, OT/PT, social workers, child life specialists and case managers so far)

-We had many encouraging visits with friends and family!

-What next? Bone Scan, Spinal Tap, MIBG scan, then Chemo and medication to begin Monday.

 Question of the Day: How do you keep an active 18 month old with 8 tubes and monitors completely still so that they don’t pull out and disrupt everything?

11/23/10 7pm: Email Update

Max made it out of surgery like a champ.  Surgeons said that everything went as planned, no complications, removed a tumor the size of a small satsuma orange.  It seemed to be contained and not stuck to any other organs, vessels or important stuff, no need for blood transfusions. Pathology has the tumor and we may know more about the neuroblastoma's makeup by Friday.  They had time to put the port in his chest and take adequate biopsies of the bone marrow for further testing. They were already able to take out his breathing tube and we were able to bypass ICU.  We have a new room at Children's on the Giraffe wing, 3rd Floor, Room 3017.  He is welcome to have visitors tomorrow and is encouraged to get up, move, and play as much as possible. 

Kari

11/23/10 2pm: Email Update

From: Josh and Kari <joshandkariburt@yahoo.com>
To: Josh and Kari Burt <joshandkariburt@yahoo.com>
Sent: Tue, November 23, 2010 2:17:27 PM
Subject: Update on Max Burt - 11/23/10 2:00pm

Dear Family and Friends,

We are so sorry that we haven’t been better about communicating the last couple days, we have had quite the last 24 hours. Here is what we know so far and answers to frequently asked questions:

What does Max have?  A neuroblastoma of his right adrenal gland.  (A collection of cells of the sympathetic nervous system which controls many internal organs and his stress responses). He has also been diagnosed with a syndrome called Opsoclonus Myoclonus Ataxia (OMA).  This causes his problems with coordination, walking, trembling, and causes rapid eye movements.  OMA is thought to be triggered solely by neuroblastomas.  We understand this to be his body's immune system producing antibodies to combat the cancer and these antibodies are attacking the nervous system function in his cerebellum.

Where is he now?  Max is currently in surgery, it is a complicated procedure because the tumor is surrounded by very important blood vessels and lies behind some of his organs, they will have to move several of his organs to remove the tumor (He will have quite the manly scar!).  They also hope to put a port in his chest so that he can begin receiving his chemo, meds, and labs through his port.  They are also hoping to do a bone marrow aspiration and biopsy if time allows to see if it has spread at all.

What next?  We will be waiting for pathology reports on the tumor (hopefully before the weekend), he will have a bone scan, spinal tap, MIBG scan and a number of other tests to determine if and where the cancer has spread, this will also help us with staging the cancer. Doctors are positive and hopeful that we have caught this soon and we will have a positive outcome.   Depending on what we decide with the trials, he will likely undergo 6 rounds of chemo, start on a high dose of prednisone to calm his immune system down and will have immunoglobulin transplants to try and flush out all the bad cells.  He will also be closely followed by a number of specialists, oncologists, neurologists, and physical and occupational therapists. 

What about Madison and Molly? – We are working with our primary pediatrician to eventually get them tested, there is not a lot of information on this condition but it can be genetic.  They both know something is wrong but are hanging in there and being well taken care of.

Can he function without his adrenal gland? Yes, he will still have his left one and it will compensate.

How rare is this?  It is an extremely rare condition, affecting as few as 1 in 10,000,000 people per year. It affects 2 to 3% of children with a neuroblastoma.

How long will we be in the hospital?  Max may be in ICU tonight until they can remove his breathing tube and then in the normal hospital until early next week.  After he is out of ICU and this lovely weather calms down Max and the family would love to have visitors.

How can you help? Prayer.  We have a lot of important decisions to make soon.  His condition is really rare and Children’s Hospital hasn’t had a patient like Max before so they are very anxious to get him into some clinical trials, we are prayerfully considering this and have a lot of research to do.

How are we holding up? Amazingly well (says Kari, freaking out says Josh).  We know this is all very scary stuff. We are very overwhelmed with all of the medical information that we have been receiving and research we have to do, but we have both been functioning well on limited sleep, have been focused enough to ask important questions, and are trying to be the best advocate for Max’s care.

Our cell phones don’t work in the hospital, but somehow we can get text messages and emails without a problem, don’t hesitate to leave messages or emails and we can get back to you. Please feel free to pass these details on to others that are interested that we may have missed. Thanks for all the prayers!!

Josh and Kari

Blogger Info

Hello, I am Zee Blog Queen; and I volunteered to donate my blog skillz to Josh and Kari.  They are going to send me updates and pictures, and I will be updating the blog as soon as I can- chances are, they don't ever look at this blog (it's created for YOU, afterall!) as they are a tad bit busy with everything; so if you leave any questions, please understand they most likely won't see them.
But don't let that stop you from posting your well wishes and prayers for the Burts!

Thanks,
Zee Blog Queen.