Beads of Courage

Many people have asked what Max and I do at the hospital when we go everyday and we thought it would be a good idea to start keeping track of all of our visits so we decided to get involved in a program that is called beads of courage. It is a neat program that gives kids a special glass bead for each nasty procedure, poke, dr appt that they have to endure. We hit our month anniversary of Max’s diagnosis and in 30 business days Max had 50 outpatient dr appointments at Children’s Hospital. In recording this for beads of courage he has had 8 procedures requiring anesthesia (MRI, CT Scans, MIBG, X-Rays, etc), 1 Bone Marrow biopsy, 1 Bone Marrow Aspirate, 1 day of Chemo, 8 clinic visits with our oncologist, 1 ER visit, 4 days of PCA infusions, 8 days of spending the night in the hospital, 1 port placement, 1 lumbar puncture, 1 surgery, 2 days of IVIG transfusion, 3 tube placements (NG, Breathing/Chest tube, and a foley), 15 appointments/evaluations with other team members (OT/PT/Speech/Opthamology/Audiology ,etc), and 18 successful pokes, IV’s, port accesses, blood draws, etc (that’s not counting all the misses). Max gets a special color bead for each thing he has done. We have counted that he is eligible for 61 different kinds of beads! What an accomplishment for a little guy in one month! Daddy says that boys don’t wear necklaces so Max can make a pretty necklace for his mommy. =)
Here is a news report from CBS that was aired this month.

Opsiclonus Update

I love posting good news to share with everyone who has been so faithful to pray for Max. We had a random eye movement test at Children's in conjunction with UW opthamologists on the 16th.  The opthamologist who had examined Max right after his surgery was so excited to see so much improvement in Max's eyes.  They had Max sit on my lap in a black room and had a dr hold goggles with built in video cameras over Max's eyes to video tape each eye ball.  When we discussed this test to begin with I was told Max just needed to sit still for one hour, but when we got there we were told that his eyeballs and head had to hold still for one hour.  My question is how does a mom control her son's eyeballs?  Luckily, Max's eyes have improved so much we didn't have to endure that torture for a whole hour.  The dr was amazed and  shocked to see the improvement.  The dr's don't know if it is the tumor being removed or all the treatment he is undergoing.   We decided that science is great but it all boils down to God performing a miracle in our little boy.

Genetics Update

More good news! Molly's ultrasound came back "unremarkable"  Yeah! This means no tumors.  I also talked with our Genetic Counselor today and the blood and urine tests came back negative for elevated HVA/VMA counts. Some kids have elevated numbers to indicate a tumor, and some don't. It's not completely accurate but can sometimes pickup issues. Max never had elevated numbers even when he had the tumor so we knew there would be a good chance the test wouldn't be completely helpful.  We will proceed to try to pickup the ALK gene in Max, if this can be found then we will test Madison and Molly using this method of screening.

I take for granted what a good patient Max can be during all these procedures. Poor Molly thought that the ultrasound tech was going to kill  her and screamed bloody murder for a whole hour, she laid on top of me and I tried to restrain her with my limbs to hold her still.  I guess this test would seem scary to a little kid who doesn't understand what is going on.

Genetics

We met with the Oncology Geneticist and and Genetic Counselors yesterday.  They have done a bunch of research on Max's condition and they were only able to trace one set of identical twins that presented with matching neuroblastomas. This doesn't really affect us since Max and Molly are fraternal, so Molly's risk will be the same as Madison.  They said both Madison and Molly are 6 times more likely to have a neuroblastoma, however they think Max's cancer may be a spontaneous case since we can't trace any other family members that have had a form of childhood cancer. We did make the decision to move forward and have at least Molly tested for now. She had a blood test and exam and we have an abdominal ultrasound scheduled forThursday to check out her adrenal glands.  Our new oncologist says that there is a new type of screening that tries to find an ALK gene that we will have Max tested for and then can run matching tests with Madison and Molly. 

Stumblin...

We realize that many of our friends and family didn't get to see Max's symptoms before we got the diagnosis since we were able to catch it so fast.  We really wish we would have gotten some good video footage to show some of his progress, but Josh and I both could not stop laughing when this SNL digital short was shared with us, as it looked just like how Max was walking before we took him to the hospital.
 
http://www.youtube.com/watch?v=-NjX0M9nuhw

The doctors say that his cerebellum is what is being attacked and he acted like he had just polished off 12 margaritas,  things progressed quickly to the point where he was irritable all the time, couldn't stand or sit up on his own, had dancing eyes, tremors, and slurred speech.  We met with our new oncologist that will be following us today and she was so pleased with the progress since his tumor was removed and he started chemo and therapy.  He is walking around the house, trying to climb stairs and he even walked through the hospital today without holding on to someone's hand! We are so excited with his progress and we know that it is because of all the prayers! Thanks!

Mommy's Little Helpers

Tis the Season for.......

 Purell and

Disinfectant Wipes!

Please don't be offended if you don't see our family around as much as usual these days.  Max's doctors have given us the talk about being extra careful around big groups of people during this season.  However, we want to try to allow our kids to lead normal lives, so we would love to hear from you if your little ones have come down with chicken pox or another common childhood illness so we can take proper precautions. There are things that our doctors can do to protect Max if we know.  Now that Max's treatment has begun our goal is to suppress his immune system to the point that it resets itself, so that it stops attacking his brain. This means that he will not have the same immunity that we have to fight off infections, and if he does catch something his symptoms may return and we may have to start the treatment over again.

Happy Thoughts for Keira

We have found blogs of other families who are in the same situation we are, some not so positive or encouraging, but here is a link to a blog of a family who has a daughter the same age as Max who has been diagnosed with a Neuroblastoma with OMA, she is also involved in the same clinical trial. They are about a month ahead of us in treatment and have made a lot of positive progress, they have done a much more thorough job of chronicling the journey through diagnosis, surgery, recovery, and treatment for those of you that would like to read more:  http://blog.crystalandnaveen.com/

God must have a sense of humor....

Somedays Josh and I wonder what God has for us next.  We realize we are being refined by fire, but we have come to the realization that we need to have a sense of humor in order to cope with days that have seemed unbearable and we realize that God must have a sense of humor too.  This was especially true yesterday as I found myself breaking out into laughter in a moment that probably seemed inappropriate.

Max's oncologists set up an appointment for us to meet with one of the more experienced and "older" pediatric neurologists at Children's Hospital, he came in and greeted us and began the conversation unlike any of the doctors we have seen to date.  He said "Have you ever used google?" and I found myself  speechless not knowing how to to respond at that moment, he went on to say that a few minutes before meeting with us he tried using google to find out more about Max's condition because not only had he never had experience with a patient like Max he had never even heard of Max's neurological condition and was interested  to learn more.  At that moment all I could do was laugh, I realize that it was probably rude and slightly innappropriate, but I didn't know how else to respond other than just letting it all out.  I also realize later that I probably should have just got up and left the examination and ask that he stop wasting our time, but in my head I wanted to hear him out because I was just sure God, Ashton Kutcher or a camera man was going to open that exam room door and say "Ha  Ha Just kidding, you've been punk'd".  As I was waiting for that moment to come, the doctor kept asking me questions that are clearly indicated in Max's chart and I asked him politely if he had a chance to read Max's chart and he said that he hadn't had time, prior to meeting us because he was online trying to look up his condition, he also asked me what type of neurological exam he should perform on Max.  I reminded him that that the oncology department wanted to make sure a neurologist followed Max's neurological condition.

I was polite and let him conduct yet another neurological examination to help him professionaly, because obviously he wasn't going to be of any help to our situation.  As he conducted his exam that of course was being conducted during Max's nap time, a day after he had completed his first round of chemo, and two weeks after undergoing a major surgery, he asked Max to walk on a straight line to this strange man and of course Max dropped to the floor and cried.  The doctor tried again and Max was done, instead of showing some compassion for what Max has been through or realizing that he might just be slightly traumatized by strangers in his face poking and prodding him and telling him what to do, he let me know that I might just have a discipline problem on my hand.  At that moment I was glad that Josh wasn't with me because I am not sure I would have been able to hold him back, and again I just had to laugh to myself and scan the room for hidden cameras.  I instantly began picking up my stuff and getting Max ready to leave and his last comment to me was that he highly recommended that I give him daily vitamins to keep his bones healthy.   I wish that I could say that I was exaggerating and I really wish that I had recorded this appointment to share with you so that you could have the same enjoyment as I did, but needless to say we will be doing more research to find a more experienced pediatric neurologist to follow Max. I will also be looking into attaching a large note on Max's chart that says "if you have not read this chart or done at least as much research on this patient's condition as his parents than please don't waste our time".  Okay enough ranting and raving for today, we hope that you all find moments to laugh and realize that we have a BIG God that is watching out for all of us and that he has a reason, and a purpose and a wonderful plan for all of our lives.

Future Doctors?

The hospital's child life specialists are keeping all my kids busy with medical equipment to practice with.  Madison is giving her "patient" meds through his port.

Chemo - Day 2

We all survived the first round of chemo! Max did so good the whole day, when we checked in they estimated an 11 hour infusion, but a big thank you to Papa who was able to recalculate our infusion times and speed things up a little bit. We got to be in a new room today and it had a tv and dvd player which made the day go a little faster. He had no reactions or adverse side effects and did so good sitting still all day, even without a nap. He had fun using his new chemo tools to fix up his hospital bed, I think we have a future engineer on our hands. Hopefully the next 24 hours will go just as well.

Chemo - Day 1

We could tell that we were covered in prayer today, Max did an amazing job getting through a long day. We left for the hospital at 7am this morning and didn't get home until 7:30pm, Max sat still on our laps during the whole infusion and even had enough energy to flirt with his nurses and keep us entertained with smiles and kisses.

He even got a personal visit with Seahawks football player Craig Terrill and a Seagal and a personally autographed poster from several football players and a bunch of seahawk gear.

They monitored his vital signs every 15-30 minutes and he had no reactions the whole day. They were also able to get him IV fluids today which will make tomorrow easier. Tomorrow will be a much longer day and hopefully we can get through it all without having to be admitted to the hospital.

Another prayer request is for patience as we deal with the hospital and our insurance company. As Max was getting setup this morning we got word that there was a glitch and our insurance company wouldn't cover Max's treatments, we got confirmation this afternoon that our insurance denied our claims to cover Max's clinical trials. Hopefully we can make some progress tomorrow as we navigate the complicated appeals process and search for a new insurance case manager.

Thanks for all the support and prayers today, keep them coming!

Drugs and Side Effects

Max will start his treatment this coming week. He will be on 3 primary drugs chemo (cytoxan), prednisone (high dose steroid to suppress his immune system to keep it from attacking his brain), and IVIG (a blood product that will flush out all the harmful antibodies). There are a lot of side effects that could occur and we are praying that they will be minimal and more importantly that we as parents can understand the pain and side effects so we can treat them appropriately.

Common Side Effects are: nausea/vomiting, loss of appetite, hair loss, low blood counts, bladder irritation, metal taste, hormone changes, heart damage, increased appetite, weight gain, fluid retention, increased blood sugar, irritability, mood changes, headaches, and back pain.

We will most likely continue the chemo for 6 months and the other drugs up to 18 months depending on how he responds. We will also need to pray that he doesn't catch any colds or viruses, because this could cause his OMA symptoms to flair up again and we may need to start the treatment over again.

IVIG and MIBG

We got good news back today. The clinical trial that we are a part of randomly determines the treatment regimen Max will receive. We got the results back today and we were assigned the most agressive treatment. We were really hoping to get this treatment, but could only get it as a part of this study. This is a great answer to prayer and confirmation that we hopefully made the right decision. Chemo has been rescheduled to begin Tuesday and Wednesday, with the trial Max will get another infusion of a biological blood product called IVIG. This means two 9 hour days of chemo.

The second piece of good news was the results of the MIBG scan. This was the test that shows "cancerous hot spots". We are still waiting for the written report but the intial findings came back clean. Even with the cancer being found in the lymph nodes this is surprising and an answer to prayer.

Pathology and Staging

Pathology is back - confirmed Neuroblastoma Stage 2b.  Cancer was found in surrounding lymphnodes, but not in the bone marrow or bones.  Chemo was postponed until next week, so we can continue to get everything in order. Also our clinical trials haven't decided which type of treatment we will get yet. We are waiting to hear if we will get IVIG treatment. If we do get the extra treatment we begin the chemo and it will take place over two days (probably tuesday and wednesday). Full day of training by nurses, pharmacists, dieticians, and OT/PT tomorrow.  We  also hope to get results back on todays spinal tap and MIBG scan before chemo starts. 

                                                                                       

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.