The Burt Family Blog

Our little ski bunny

2012-03-06T15:06:00.002-08:00

We had a chance to get up to the pass for an evening of skiing with the family. By the end of evening she was on her own no longer needing any assistance. Had a hard time capturing a video, couldn't ski backwards fast enough to keep up with her.

http://www.youtube.com/watch?v=TK4MV3bBbHE

IVIG Infusion

2012-02-17T15:47:00.000-08:00

After a year and a half of these infusions you would think we would have the routine down. However we switched brands of IVIG a couple months ago and I guess it has just now caught up with him and today was spent with lots of tummy aches and vomitting. Mommy was not prepared for enough outfits for either one of us. We have escaped much of the nausea up until now, so after playing around with some anti-nausea drugs we will now be adding it as a regular premed so we don't have another day like today. We were very ready to get home tonight and take showers....

All boy...

2012-02-13T11:59:00.000-08:00

Virus Free

2012-02-10T09:58:00.000-08:00

Max's virus testing came back clear this last week, the very minor cough that he had seemed to taper off and no additional symptoms appeared so we are good. There are so many respiratory viruses going around right now, if you or your family is suffering from them, we are sorry. We have been soo lucky not to have been affected by too many viruses this year and with three preschoolers this is a true miracle... Please don't be offended if we aren't attending as many functions as we normally attend. There is just so many bugs out there right now and apparently the actual flu virus hasn't even hit yet so we are in for a late flu season. Luckily Max is so good about keeping his hands clean and not touching his face or putting things in his mouth, God has blessed him with a clean gene. We know so many parents who have pulled siblings out of school while on Rituxan, and put their family on lockdowns, but after discussing this option with our doctors and Madison's preschool teachers we have decided to let her continue to attend, they are great about letting us know if there are bugs going around or even something scary and then we can call the doctor and make the call whether to send her or not. The girls have had to give up so much this year, we would like to allow them to have some fun when they can. They have all been so helpful to keep our house germ free. Madison is in charge of spraying lysol on all of our doorknobs and light switches everyday and Max and Molly are professional wipers on all surfaces they can reach. I have even caught the girls putting purell on the hands of their baby dolls. =)

Chemo #4

2012-02-10T09:15:00.000-08:00

After an exciting morning, exhaustion set in

Sorry for the delay in getting these posts up. Max had his fourth treatment on Monday and we had a busy day planned, the team wanted Max to have another appointment with a specialist in the afternoon so they were hoping that we could shorten the infusion time to make it a shorter day and allow us to get in and see this specialist who usually has a 6 month waiting list to get in to see him. When we got to the hospital early in the morning we got everything going pretty fast, but our team hadn't communicated to the nurses or oncology pharmacist the infusion rate that needed to be kept in order to cut down Max's time, so there was some discussion about the rate. After getting our premeds and clearance from the hospital to get an exception to shave a few hours off, the infusion commenced, they turned up the rate and we settled in for a long day. However, within a couple minutes of turning the rate up Max started to cough a couple times and then started gagging like he was throwing up, I turned around to grab the vomit basin and then when I turned back around it seemed I had the whole unit in our room, at the time I didn't realize what was happening but all the doctors and nurses knew what to be looking for and knew what was going on. Max's stats were dropping and he was having a reaction. It seems his throat was closing on him from the infusion, I guess this can be common, but it came on so fast I wasn't expecting it to start with just one cough. He didn't even have time to tell us what was going on and of course he was so scared he couldn't even point or show us what was wrong. Luckily they had oxygen handy and a shot of epinepherine close by to help, they also immediately shut off the infusion. We had a little scare, but after some observation time and lots of discussion whether to continue the chemo, we decided on the new premeds to be given to try to protect against this in the future and then we gave it another try, I guess Max is a low and slow kinda guy, I cancelled the rest of Max's appointments, and they kept us for observation until the unit shut down for the evening at 7pm. The rest of the day went much smoother.

Corndogs make everything feel better for a two year old....

Hair...

2012-02-09T09:36:00.000-08:00

We have had lots of questions about hair loss during this round of treatment. The Rituxan doesn't usually cause complete hairloss like other chemo drugs since we are trying to target a very specific cell line, but with the additions and increase of all his other meds, Max has experienced a bit of hair thinning and loss. He was losing it in his bed and when you ran your fingers through it it would come out, it was also pretty itchy for him so we have been keeping it cut short to keep it from getting too annoying. He has a few bald spots but with his light, fine hair it isn't too noticeable to the general public, it also helps that he is a boy and can sport it well.

Chemo #3

2012-01-31T22:46:00.000-08:00

We had a much better day on Monday. It was a long day but more pleasant than the others. We left at 7:30am and returned home about 7pm. Max developed a little cough which if it would have been any other kid I wouldn't have noticed, but because we have to be so careful of infection right now we took note. They did viral testing to see what type of virus might be in his system if any. His lab counts were all over the place yesterday due to all the manipulation that we are doing with chemo and medication, so we weren't able to tell what is going on in his blood. I don't think it is anything to be worried about, but always better to be on the safe side, we should get results back soon. We also have to be cautious of pneumonia right now it can silently crop up and they think his system is able to produce a fever so if we get to 99 than we get an ER visit. He is on the same antibiotic that he has been on all year which should help protect against one specific type of pneumonia. So we will watch the next couple days just to be sure. The infusion part of the day went really well. If you recall benedryl is not a good friend of Max, so we were able to discuss another drug option with the pediatric oncology pharmacist, but since benedryl is the best that there, we tried another drug but had to run the the infusion low and slow, knowing that if anything came up we would still need to give him benedyl. Luckily it all worked out, and the new drug worked well, Max lounged on his hospital bed without getting down for 6 hours straight. He took a great nap, played a little with some new toys and just took it easy all day.

Narcolepsy??

2012-01-31T22:40:00.000-08:00

Even though Max feels yucky at times. Life still goes on. I love how Max just conked out in the middle of Costco. Didn't even wake up when Molly spilled all of her sample foods on his head. =)

Glucose and Growth

2012-01-26T23:35:00.000-08:00

Max had a good glucose check this week, but we still got to hang out with our favorite endocrinologst. When we were able to decrease his steroids the first two weeks in December Max actually grew almost 1cm. I was very excited, because this means that he is able to produce a little bit of hormones, but the doctor told us not to get our hopes up 1cm isn't very much and now with the increase in steroids we won't be seeing any more growth for quite awhile. He also lost a little bit of weight since we have started the chemo.

The only problem is that with this little bit of growth it has slimmed him down more than he already was and his pants aren't fitting any more, even his pullups just slip right off when he runs, so he has mastered the art of grabbing his britches and taking off. We have increased the amount of supplements that he is getting in hopes that we can bulk him up a little. We are running some more tests on the actual functioning of his pancreas so that we can start to monitor closely, they are also going to get us set up with a class on how to use a glucose monitor and track his blood sugars. But there doesn't seem to be any immediate need to begin insulin. We will wait to get more of the results back this week.

Chemo #2

2012-01-24T22:42:00.000-08:00

Since this was a subsequent infusion we were able to try running the infusion a little faster today, which was nice in theory it made for a slightly shorter day but was much harder on Max. No smiles today. The benedryl was run by iv for 45 minutes to try to decrease the effect on his body, they even added a little fluid to try to dissipate the meds, but there was no tricking Max, he was pretty uncomfortable and not his usual self. We got our favorite infusion nurse Aaron and he was so bummed that Max didn't feel like playing with him today. Aaron thought Max had a really bad reaction to his premeds but I thought it was a lot better than last week. Once the effects of the benedryl wore off Max was finally able to fall asleep just about the time we were ready to shut off the infusion. We were excited to get home so Max could feel a little more comfortable.

Chemo #1

2012-01-17T23:01:00.000-08:00

What is God trying to teach us? Are we handling this whole roller coaster so well that he needs to throw a wrench in it and make it a little more difficult. Last year we endured a 9 hour car ride home the night before Max's surgery and a snow storm and got stuck on I-5 when it shut down and this year the snow/ice storm hit just in time to change all of our plans. With that nightmare in the back of our heads it just meant a little more coordination, so we had backup plans and backup-backup plans and then worse case scenarios just in case. With hotel or hospital bags packed, enough food and meals to last everyone all week, luckily it all worked out. Tuesday Max and I left at 5 am to make it to the hospital in time for his first chemo treatment. Child care for the girls went smoothly and we were able to get out by 7pm in order to make it home before the next storm hit. We went back and forth with our doctors and staff about what to do with Max, he needed two days of treatment and another day in the clinic with the pending storm it would require us to stay in the hospital all week, which I wasn't excited about being separated from the rest of the family and also risking our insurance not covering our hospital stays if it wasn't entirely needed. But we also had to be within 1 hour of the hospital in case a fever struck. We decided to get the necessary chemo part taken care of on Tuesday and than reschedule the rest of the appointments and infusions on Thursday and Friday. They had a hard time keeping the unit staffed on Tuesday and knew the rest of the week would be worse.

We got through labs and dr appt and got Max premedicated really fast to try to be as efficient as possible so we could get home. BUT Max turned out to be that 1 in 15% that has the opposite effect to benedryl, which was a required premed due to the risk of an allergic reaction. So instead of gently falling to sleep like most kids, Max went completely ballistic, shaking, twitching, screaming and totally uncomfortable, I was unable to console him and it made getting an infusion even more unpleasant for all of the rest of the kids who had to listen to Max. The problem was that this continued for two hours during the start of the chemo so the doctors and nurses had to keep an extra close eye on him to make sure it wasn't him having a reaction from the chemo. They slowed down the rate of infusion, so much that the pressure of his blood was heavier than the rate going in and several times his blood would pump back through his tubing. Luckily we were able to get him to at least settle down a little which made his blood pressure decrease and then when the benedryl wore off Max was finally able to sleep. I am sure he was completely exhausted, than when he woke up Grandma and Papa showed up after Grandma's chemo day to play with him which made the rest of the day much better.

New Plan....

2012-01-11T16:39:00.000-08:00

Trust in the Lord with all your heart and lean not on your own understanding, in all your ways acknowledge Him and he will direct your paths (Proverbs 3:5-6)

No More Cookies....

As parents it is so hard to know what is the best option for your child, all options have side effects and risks associated with them. If we aren't aggressive enough we run the risk of developing long term brain damage, too aggressive and you can have scary side effects and long term issues. As all of our doctors have said, Max has shown so much potential in all of his testing which means we have so much more to protect. As parents we prayed that the right decision would be very clear to us and Monday morning God delivered. When we started our normal weekly testing we found that his glucose levels were elevated, something we have been waiting on for awhile, it looks like Max's pancreas is starting to get overworked, this last increase in steroids must have done it. We are going to watch his diet very carefully this week and then discuss insulin next week, luckily steroid induced diabetes should be reversible as soon as we get him tapered down on the steroids. So this new news ruled out two different treatment options currently available for Max, and as God promised we trusted in Him and the path was very clear.

So we start a new round of an oncology drug called Rituxan next week. He will receive this by infusion at Seattle Children's along with his IVIG infusions. We are in the process of screening for several viruses that Max may have dormant in his system, if he has any of these dormant viruses it can cause major issues including fatality within 24 hours of receiving this drug. The other problem is that he has been receiving IVIG infusions all year which come from donor blood, so the chance of someone else who donated the blood who may have had these harmless viruses are elevated. Luckily, the UW has a world renowned virology lab and they are processing all of his blood now and should be able to tell if Max has any of these dormant viruses or had contracted them from his infusions. We are praying that everything comes back negative this week so that we can proceed with treatment next week.

We will do 4 or 6 weekly infusion treatments at Children's and continue with his steroids and IVIG treatments. The last type of chemo that he had, attacked several cells in his body in hopes that we could get his immune system to reset. It sounds like we tried to give him a dose just beneath a level that can cause all the nasty long term issues like infertility and blood cancer. It seems that we may not have given enough, so instead of doing another round of the same stuff we are going to switch it up in hopes that we can trick his immune system. This new treatment is more aggressive and should completely eliminate all of his b-cells in hopes that when they grow back in the next 6-9 months that they will be fixed and no longer attacking.

I have tried to simplify everything as it can be complicated, overwhelming and lengthy, so if you are one of our folks in the medical industry and you are interested in more information or you have more questions let me know and I can try to address them in the upcoming weeks. We are excited for this new plan and a little nervous at what the next few weeks may hold, but most of all we are very appreciative of our friends, family, and community praying for us and supporting us through every step of the way, we have a peace that can only be from God in the midst of a stressful time. Stay tuned it sounds like we have a big month ahead of us so keep those prayers coming...

Physical Therapy - Sarah

2012-01-08T21:21:00.000-08:00

We love playing with Sarah at Children's Physical Therapy she takes care of all of the Oncology patients at Children's. We learned recently there has been so many cancer kids in the hospital that she will be moving to inpatient therapy only. She is trying to make special arrangements so she can still see Max as an outpatient because they have a special bond. Sarah shares our love for the UW Huskies, and she was actually married on the field of Husky Stadium. We appreciate her cheerful attitude and all the encouragement she gives Max to keep trying and it has paid off as he is doing so well accomplishing all of his goals. We are very lucky to have had the chance to work with Sarah.

Miracle Flights

2012-01-08T10:28:00.000-08:00

Miracle flights so graciously supported our family in providing airline tickets at a minimal rate. The best thing was that they handled all the reservations and booking the tickets, one less thing for mom and dad to have to do. They also let us know that they want to continue to support us in the future and will help us with all future medical flights that Max might need. What a huge blessing. Check out our story on their website at http://www.miracleflights.org/how-we-help/childrens-stories/story/max/

Boston

2012-01-07T12:08:00.001-08:00

We had a great, but brief trip to Boston. Had a wonderful meeting with doctors who provided lots of education and options for us. We meet with our Seattle team Monday morning to discuss. We were able to stay at the Ronald McDonald House about a mile from the hospital. It was so nice to stay at a place that felt like home, Max had a hard time parting with their fun playroom. They even had a personal refrigerator ready for all Max's medicine that needed to be refrigerated so that it could be kept close at hand. We only had a couple hours to sightsee before our flight left so we were able to visit the USS Constitution and walk the Freedom Trail for a little bit. Max did wonderful on all the flights we had many people comment on how good he was, he even slept for four hours on our first leg. Thanks for all the prayers, while we have a lot of questions and decisions still to be answered, we have a sense of peace that we have the right people on board to lead us. Stay posted for more details....

Beads of Courage - 1 Year Later

2012-01-05T14:45:00.000-08:00

2011 Max Facts

229 Appointments scheduled at Seattle Children's Hospital.
130 Speech Occupational and physical therapy appointments in our home.
52 different doctors, therapists and providers followed Max this year.
232 beads of courage earned.
Took between 3 and 4 medications every day.
12 days of infusions.
93 days spent at the hospital
5 ER visits.
200 hours + spent in the car traveling to and from appointments.

And he did it all with a smile on his face making the best of every situation.

Skiing

2012-01-02T21:25:00.001-08:00

We had a wonderful trip to Bachelor with the family after Christmas. Madison learned how to ski with us. Even though it was dumping snow and stong wind gusts, she had a great attitude and was excited to go back. You couldn't miss her on the mountain she was the little one squealing with joy down the mountain, with her arms in the air ( because it makes her go faster like on roller coasters). Lots of great memories were had by all!

Tapering, Relapses and Chemo, oh my!

2011-12-21T17:55:00.000-08:00

We were on track to taper Max's steroids to get him to a manageable level before the first of the year. However with each taper we have slowly seen some intermittent symptoms breaking through. A slight tremor here and there, some extra clumsiness, extra fatigue, more sleep disturbances, a little more crankiness, and a little more leaning on things and people to try to support himself. Obviously symptoms like this in a two year old are to be expected, they were just showing up a little more than we would like to see. We finally got to a place last Monday where we actually dropped Max's evening dose of steroids and then it hit. By Thursday Josh and I both were able to see the opsoclonus present in his eyes (if you recall last year this was so subtle that it fooled many doctors and Josh was never able to see it), the sleep disturbances were undoubtly worse, he was very clingy and cranky and then by Saturday morning he had 4 hours where he was physically unable to walk no matter how much we tried. Sunday night he was awakened every 5 minutes crying and by 5am was completely unconsolable and cried until he vomitted, luckily we had a hem/onc PT checkup at the hospital Monday morning and he again was unable to walk, he chose to crawl and scoot on his bottom to accomplish all of the tasks in between the crying. All of our favorite hospital staff could tell this was not their charming little buddy who would run through the halls flirting with everyone. We were around a lot of people this weekend and we ran lots of tests to see if by chance he might have picked something up that might be an indication that a virus may be brewing, but nothing showed up in his blood counts.

The oncology appointment was next and she could clearly see the change from where he was prior to our last taper and said it would make sense that he would relapse at this point in his schedule so we decided to treat him with a pulse dose of steroids (6x the dose he was currently on) and we were able to get him in for an emergency infusion of IVIG yesterday to try to flush out some of the antibodies that are obviously attacking his brain. If you recall we had a bad reaction in our last infusion and so we worked hard to track down a different brand of the immunoglobulin and we pretreated him with different medications and ran the IV's really slow to try to keep him from having a reaction. It's still too early to tell if he will have a reaction or not since it usually hits day 3-5 so hopefully we can get through Christmas without any problems and by doing the infusion and the pulse dose it will also buy us 1-2 weeks until we can come up with a new treatment plan.

What about Boston? Good news is that we got word at 6pm last night that our insurance company's Medical Director approved our request. Bad news is that at 7pm last night we got word that Max may not be in a place to be travelling right now. So the Harvard Neuro-Immunologist has been in consultation with our team to give recommendations based on the information, charts, and tests, shared with him from us and our providers. However, we are still in the process of working on this.

So what's next? this relapse makes it clear to everyone that the steroids have been masking the active disease that is still present in Max's body. We are working diligently with many specialists to come up with a new treatment plan, currently the only thing that everyone can agree on is the fact that Max will need to start a new more agressive chemotherapy type of regimen the first of the year.

How can you help? Pray - We have a lot of coordination, research, decisions, questions, and praying to do in the next 2 weeks.

More to come later.....

In Loving Memory of our Beloved Grandma - Jeanette Kent

2011-12-07T14:46:00.001-08:00

We are rejoicing that our beloved Grandma Kent has joined her Lord and Saviour on Saturday, December 3, 2011 at the age of 99. She was a beautiful, humble, and gracious woman. She was such a talented artist and loving sister, mother, grandmother, great-grandmother and great-great grandmother to us all. She will be greatly missed but we are excited that she is in a better place.

A service celebrating her life will be held at Boulevard Park Church on Tuesday, December 13th, at 3:00pm.

5 Generations

At the age of 99, Jeanette went to be with her Lord on Dec. 3, 2011. She was born in Spokane, WA on Sept. 25, 1912; the second of four daughters of Milton and Ida Ramsey. Her family moved from Spokane to Seattle where Jeanette and her two sisters, Blanche and Mildred, attended Jefferson Elementary School in West Seattle. She later graduated from West Seattle High School where she met her future husband, Joe Kent. She attended Edison Technical School (S.C.C.C.) on Capitol Hill in Seattle learning the skills to become a beautician. She worked at Mary Stone Beauty Salon in downtown Seattle. Eventually, Jeanette and Joe were married and began to raise a family. Jerry came first, followed by Jean, and later Judy. Their first home was in Highland Park on Ninth Ave. where they became lifetime friends with Ina, Jim, Carol (who later married Jerry) and Jimmy Sherman. In 1950, Jeanette and Joe built their home on Gatewood Hill in West Seattle. It was a courageous labor of love for a young couple having no previous building experiences. Jeanette not only designed the beautiful view home, she pounded and pulled nails, poured cement, and roofed the house, etc. To supplement the family income she worked at Fredrick & Nelson in downtown Seattle for a few years. She was a very loving devoted wife, mother and homemaker while raising her family. Their home was always shared with the extended family as they hosted the much anticipated and appreciated gathering on Christmas Day.

Her faith and church were very important to her. Jeanette grew up at Seaview Methodist Church in West Seattle where she and her sisters were active members. They became involved in Christian Endeavor (C.E.) as young adults. After Joe and Jeanette were married, they worshipped at Westside Presbyterian Church and then moved to Boulevard Park Presbyterian to be with their family. After Joe’s death, Jeanette became actively involved in weekly ladies bible study (WOW), the monthly circle meetings, and the Clipper Club, each playing an important role in her life where she had close, loving friends.

Jeanette had many creative talents. She was a superior seamstress and would sew for her children, grandchildren, and church circle. She could paint ceramics, use a potter’s wheel and draw intricate pen and ink sketches, but Jeanette’s oil paintings were especially enjoyed by all. She was an avid gardener and loved to keep her garden full of beautiful plants and flowers. In later years, Jeanette and Joe enjoyed their two poodles, as well as, traveling to many countries, cruising to the Caribbean and the Panama Canal, and taking many trips to the Hawaiian Islands. She cared about the people in her life. Jeanette nurtured her relationships with her extended family, neighbors and friends. She was a devoted daughter, wife, mother and grandmother. Her love of family was reflected in how she cared for her three children, seven grandchildren, eighteen great-grandchildren, and six great-great grandchildren. She loved celebrating and attending each and every one of their birthday parties. Jeanette was a very strong, positive role model for all the family members. She was a peacemaker and an exceptionally warm and loving person. She will always be loved and remembered by all of us.

Test Results

2011-12-06T07:12:00.001-08:00

We had a nice meeting with our oncologist on Monday to discuss all the results of our recent tests. She was very pleased with everything she saw. Max's disease can be very complicated and even after a year of research we are still very overwhelmed by it all. I am going to try to simplify, but feel free to ask me if it gets too complicated and you have additional questions or the following doesn't make sense:

We have two issues being evaluated - Neuroblastoma (malignant cancer) and his OMS (neurologic autoimmune disease)

1. Neuroblastoma Cancer - From a cancer perspective there wasn't anything to be concerned about. No malignancies or abnormal cells were found in any areas. We will continue to do another scan in 3 months to watch a couple areas and then possibly extend it to 6 months if everything remains the same. Praise God! We are very excited for this news!!

2. Opsoclonus-Myoclonus-Ataxia Syndrome (OMS) - When Max was diagnosed a year ago he tested at a 7-8 on a scale of 10 for the severity of his disease as evaluated by the clinical trial criteria. He has slowly and steadily received better scores at each checkpoint along the way. Now that we are approaching the end of the study he is now a 4 on the same scale, which is excellent, we are also very excited that he has made so much progress, however this is still considered a partial response. Max's doctors were all in agreement today that perhaps now is the time to pusue other treatment options to see if we can try to get a complete response from him. The problem is now that we are at the end of the study and we don't have many doctors in Seattle who are experienced with coming up with treatment protocols for kids at this stage.

What next? So... we will be traveling to Boston Children's Hospital (Nations's #1 Pediatric Hospital) in the next few weeks to see a Harvard Neuro-immunologist who is having some success in treating children like Max. There seem to be three other treatment options to consider - more agressive type of chemotherapy to kill the remaining antibodies (not for cancer), different types and schedules of steroids, and additional infusion options.

Many have commented on how well he looks and why not sit and wait and see if he gets even better - the problem with this disease is that with even the slightest lingering symptoms may mean he may still have antibodies that may be silently attacking his brain which can cause irreversible brain damage. The good news is that he isn't showing any deficits in his development at this point which is a really good sign.

We still have some instability and trouble with balance at times, lingering tremors, and sleep and behavior disturbances that causes us to be very cautious, we were referrred to a be apart of a sleep study done in the next month to rule out any other issues that might be causing his sleep disturbances. Many kids like Max use sleep medication and we just don't feel very comfortable medicating him at this point without ruling out everything else and we would hate to mask any symptoms that might clue us in to there being a problem with a build up of those attacking antibodies.

Thank you for all your thoughts and prayers over the last week, we have all had an amazing sense of peace anticipating God to bless us as he has done all year. We would love your continued prayers for all the pieces to come together so that the planning for the trip and gathering all the records would go smoothly and that we would have a peace about Max's next treatment plan.

We would also love prayer for all the pieces to come together for our new health insurance. New health insurance you ask? Yes, we found out the day before Thanksgiving that our health insurance was changing effective December 1st . As you can imagine there is a lot to coordinate when we have such a multi-disciplinary approach to Max's care. Since we don't have a lot of options at this point we are trying to get all of his current care and doctors covered which has proven to be pretty difficult we also have a few services being reviewed by the insurance company's medical director in order to gain coverage, again the problem is that we are up against an extremely rare condition that has no standard of care so there are no policies over what is and isn't covered for a kid like Max. We are just trusting that the Lord will work it all out, because other than lots of arguing and a little yelling there isn't much we can do. =)

Thanks for keeping up with us, hopefully we will have more news soon.

Test Day!

2011-11-28T21:28:00.001-08:00

Max got to drink his contrast by bottle so that we could be precise in our measurements.
Max thought it was fun to pretend to be a baby and drink out of a bottle.

Max made it through a long day of tests. We were a little worried when we started off the day with many tears because he wasn't allowed to eat or drink and then we had a hard time getting his magic cream and tickle tape on him. He ran through the house grabbing his port and yelling "don't take my blood" which I am sure was just a little anxiety over going to the hospital today and not understanding what was going to happen, but then the rest of the day went very smoothly.

We managed to get an MRI, CT Scan, and a spinal tap all done successfully. He was under anesthesia for a lot longer than he is used to but he did very well this time (so far). He got some good pain killers for the lumbar puncture which have made him in a particularly good mood. Overall he had to fast for almost 24 hours from all food and liquids so I bet tomorrow will be spent catching up on lost time. I have had two specialists working on calling around to different doctors around the nation to find a lab that can analyze Max's Cerebral Spinal Fluid (CSF) for the last two weeks, as of this morning they were both still working on it, unfortunatly Children's doesn't have the lab equipment needed to run certain tests and doesn't have the specialists who are trained to read the results. We are hoping that we can find both of these things soon before the CSF goes bad so that we don't have to redo this test or even worse travel to another state to redo this test. They were able to retrieve two different samples one of which got sent directly to the clinical trial that Max is a part of. Stay tuned for the results from the other tests, hopefully this week.

This was the view from our hospital room today.
Do you think God could be any clearer?

Make-A-Wish Care Package

2011-11-18T14:50:00.000-08:00

Max got a really fun care package from Make-A-Wish this weekend. As you can see he is loving it!

Sleeping with Lightsabers

2011-11-08T21:14:00.000-08:00

Monsters be afraid...

10th Infusion - IVIG - Complications

2011-11-05T23:18:00.001-07:00

We had a big day today. We managed to squeeze 7 appointments with providers, a 90 minute speech test and a 5 hour infusion today! Whew!

Good News is that we might not need to do another infusion for awhile, bad news is that he developed a reaction from this round. After two rough days at home we ended up back in the ER trying to figure out what kind of reaction he was having. He was very tired, and was in screaming pain which he could clearly tell us was affecting his head. Turns out he contracted aseptic meningitis from this particular batch of IVIG. I guess this can happen in 17% of patients that receive this infusion. It sounds much scarier than it is and luckily after 5 days he was back to his normal self. I guess the reaction can build up after receiving infusions for awhile and our doctors are doing more research and contacting other doctors around the nation to decide what our next step should be. In reaching out to other parents in our support group it sounds like there are many other OMS kids who struggle with this reaction.

For those of you who like to know more details you can read more about this reaction here: http://www.annals.org/content/121/4/259.full.pdf

Pinkalicious - Just Think Pink

2011-11-05T23:09:00.000-07:00

Madison's favorite book is Pinkalicious, about a little girl who eats one too many pink cupcakes and wakes up pink and has to eat green food in order to reverse it. We read this book at least once a day and when it was time to dress up for halloween our first pick was to be none other than Pinkalicious herself. However on the day before Halloween Madison wokeup with a body full of hives. She must have eaten or come in contact with something that she is allergic to however the only thing she ate the night before was chicken, broccoli, and pasta, and a pink cupcake at grandma's house (all staples around our house). We woke up on Halloween and after 24 hours of Benedryl her whole body was even more covered with hives, she was indeed pink. I took her to her pediatrician and he confirmed that she was allergic to something and gave her a little stronger medication to try to cure her "pinkititis". Since she wasn't uncomfortable we decided to hold off day giving her medicine so that she could play the part of her favorite girl that night.

It just so happened that Pinkalicious the musical made its debut in Tacoma this weekend. We enjoyed a cute show in a theatre full of little girls dressed all in pink.

Thank You Costco

2011-11-05T22:36:00.000-07:00

Dear Costco,
Thank you for having carts with large seats for kids. It makes our weekly costco trips so much easier....

Happy Halloween

2011-10-31T08:51:00.000-07:00

Love, Pinkalicious, Depot Guy, and Tinkerbell

Flu Shots

2011-10-31T08:46:00.000-07:00

The Burt kids are all officially armed with flu shots now. No flu mist for them this year. Molly and Max did just fine getting their shots, but Madison seems to have a severe fear of shots. Luckily our cousin was able to bribe her with a special cupcake bandaid. As you can tell it wasn't a pleasant experience. Max reminded Mom to not cry when I got my shot and he offered to hold his sisters hands as well.

Have you gotten your flu shot yet?

Wish Granters

2011-10-31T08:33:00.000-07:00

We had a nice visit with Max's new friends and wish granters from Make-A-Wish. They came over to our home and brought toys for Max and the girls and got to know Max. We had a lot of paperwork to go through and then they tried to get to know Max a little better to find out what things he likes. We are going to put things on hold for a little bit to get us through the next month. We have a lot of tests coming up this month as we try to restage Max's cancer and then hopefully we will learn what our treatment schedule will be and will also be able to get clearance from doctors for travel. They have a lot of paperwork and details to get through and some magic to arrange. Stay tuned for more exciting news....

Welcome Home Molly!!

2011-10-30T14:53:00.000-07:00

Daddy and the kids made a trip to Legendary Donuts to welcome Molly home.

Madison picked out the tinkerbell for her and Molly and Max enjoyed his dirt donut. Daddy even got a special UW husky donut.

The kids were excited to have Molly home, she bounced back right away and was feeling much better after a couple days. She still has a kinda nasty sounding cough and wheezing which is probably from all the treatments she received . We had her in to her primary pediatrician on Friday to follow up because her steroids were wearing off and the wheezing was increasing at night. We are going to try an albuterol cough syrup to see if that will help. She is still too little to try to learn to use an inhaler properly, but the doctor is hopeful that this was just a random isolated case and shouldn't necessarily indicate future issues. He reviewed all the reports from our week and said that the hospital said that it was the worse case of croup they had seen. As a bonus, we did find an ear tube laying in her right ear, which means she has already grown out of her 2nd set of tubes. We are praying that she has outgrown all the ear infections, but may need another surgery in the near future.

Hormone Check

2011-10-25T23:24:00.000-07:00

We had a nice visit with Max's Endocrinologist (Max's Favorite Doctor). Max has officially remained the same height and weight all year. He lost 5 lbs last year between his cancer diagnosis and the surgery, but other than that he has remained the same. We are hoping in the next couple months to get him weaned down to small enough dose of steroids to encourage his system to start growing, The next six months will be critical in order to see if his own body will kick in to gear and start producing those hormones that will get him growing. Molly is now 7 pounds heavier than him and 2-3 inches taller.

We are home!

2011-10-21T19:16:00.000-07:00

We got home succesfully tonight. After 10 epinipherine treatments, 5 times the amount of steroids that should have been needed, Molly is doing so much better. We still have a really sore throat, no voice and nasty cough, but we are breathing just fine. We were able to get an emergency dose of steroids to give her tonight in case we run into any problems and if she does get into any more trouble they want us to come back immediately. Both Mom and Molly are looking forward to getting a good night sleep in their own beds. Thanks for all the prayers!

Stridor breathing

2011-10-21T14:53:00.000-07:00

Here is a brief video of Molly with her stridor breaths. If your child has this type of breathing do not take him or her to the hospital call an ambulance. You will hear the code in the background calling all available doctors to our room. You will see that Molly looks uncomfortable but isn't overly anxious or upset which is why I didn't find it necessary to call an ambulance. However, lesson learned. Turns out her vital signs were pretty bad..

"Stridor is an abnormal, high-pitched, musical breathing sound caused by a blockage in the throat or voice box (larynx). It is usually heard when taking in a breath. Children are at higher risk of airway blockage because they have narrower airways than adults. In young children, stridor is a sign of airway blockage and must be treated right away to prevent total airway obstruction."

Molly also had tracheal tugging you can kinda see her throat being drawn in with every breath which is a sign of struggle, we definately got immediate attention at Valley Medical, Children's ER, Children's ICU and in the hospital. We also had lots of researchers, medical students and residents watching Molly closely, because while Croup is really common and is filling the hospitals right now, these stridor breaths are not common, they said she was in respitory distress and had reactive airway disease which may be a sign for asthma in the future, still too young to diagnose right now. Just an abnormally bad case of croup. Leave it to the Burt family to have a rare case of something,

Molly was so good through it all.The IV team came to get her IV put in and they put on our "magic"cream that we put on Max at home and she got very excited and whispered"port?". The whole room laughed as they all know thatshe is a twin to a cancer patient and how different her world is that she isasking for a port instead of an IV.

Molly enjoyed putting stickers on herself while we gave her breathing treatments.

We are still at Children's in the normal medical unit,hoping to go home soon if we can get enough fluids down her without the iv. We are also trying todecide whether or not to send us home with breathing treatments or steroids incase we get into another emergency situation. Will update more later...

Molly's Hospital Adventures....

2011-10-20T14:17:00.000-07:00

Molly was just fine until after nap on Wednesdayafternoon. She woke up and had a superraspy voice and really hard time breathing, but was playing and having fun,smiley and happy, but given the news from the previous night, I knew it wasgoing to be a bad night, I got all my medical books out, called all my medicalresources on what needed to happen when things got bad in the middle of thenight. We tried all the home remediesfor croup and nothing would touch Molly’s breathing. She was working so hard to get a little air,even after humidifiers, hot steamy showers, cold walks outside, we even had herhead in both of our freezers to see if we could get her little lungs to openup. Finally at 10pm it got a scary, Irushed her to Valley Medical ER thinking that if she could just get a breathingtreatment she would feel better. I was concerned enough about her breathingthat I didn’t feel comfortable driving so f1ar without medical treatment whendealing with a breathing issue (and selfishly after spending the last day atchildren’s I really didn’t want to go again for a breathing treatment) when weshowed up at Valley we were quickly rushed into a room and the nurse took her vitalsand then ran out of the room and hit the alarms and called all availabledoctors to our room. Things got a littlecrazy and we got quick shots of epinephrine and steroids to try to get herthroat and lungs to open up, that didn’t work so they kept giving her breathingtreatments of epinephrine and albuterol to try to get her vitalsstabilized. They worked hard for 1 ½hours and then called the critical care ambulance (along with an ER nurse)to transport us to Children’sER . We got five more doses of epinephrineuntil finally she was able to relax a little around 5:30am and they felt better about admitting her. We were watched very closely by the ICU teamalong with lots of other doctors. Willpost more later….

Oh Croup....

2011-10-18T18:37:00.000-07:00

Sorry I haven’t had a chance to make a lot of calls in thelast 24 hours so please accept my apologies for not contacting more peoplepersonally. Leave it to the Burt familyto bring a little excitement to what was supposed to be a normal week.

Tired of waiting for test results

We started out Tuesday night with Maxdeveloping a fever and we have strict orders to call the oncall oncologist andcome straight in to the ER, so we did. After performing lots of tests to try tofigure out what was wrong I finally asked to go home so that we could rest alittle bit while we were waiting for test results and were able to get homeTuesday afternoon. Then we got severalcalls from the hospital and oncologists letting us know they isolated theparainfluenza virus which is the virus that causes croup. Max didn’t seem to have any normal croupsymptoms because of the steroids he is on. So far no other symptoms, he is up playing and feeling better allready. We will be watching him closelyand meeting with his team again on Monday unless anything changes..

No more tears!

2011-10-17T21:53:00.000-07:00

We are back to sitting by ourself while getting our blood drawn, such a big boy doesn't need his mom any more. In the second picture Max is asking me to stop taking pictures because I am distracting him from the movie that is on in the background.

Make-A-Wish

2011-10-16T22:53:00.000-07:00

www.wish.org

Max has officially received one wish from the make-a-wish foundation. We will be meeting with wish granters shortly to interview Max and get to know what would make him happy. The organization will try to "make every effort to provide hope, strength, and joy to each wish child through the granting of his or her most heartfelt wish". They include parents and siblings in the wish and try to make all participants feel special, while making all the arrangements and covering all wish related expenses. We are so excited for Max and can't wait to be a part of this magical experience.

What would you wish for if you were given one wish?

Monsters....

2011-10-13T23:39:00.000-07:00

Max has struggled with night terrors over the last year. He will have anywhere between 1-3 in any given night. They do seem to change in intensity with the fluctuation of his medication, however up until recently we never knew how to really comfort him because he couldn't communicate with us in the midst of the screaming. He will start screaming uncontrolably while still asleep, depending on the severity of terror it will take us some time to try to get him to snap out of it and wake up. We understand that this is a very common symptom that Max shares with other OMS kids, but our doctors are having us pursue other therapy to make sure he isn't also struggling with a post tramatic stress disorder as well.

The last couple months Max has been able to verbalize more and let us know that these dreams are very scary and include monsters. Max does have Henry the good monster and Buzz lightyear and they try to protect him. Most mornings when Max is more awake we ask him to tell us about his dreams and most morning the only answer we get is "scary monsters". However one day, we were asking Max about his dreams and Molly chimes in and shares a story about her monster experience. She claims that she has a monster named Pak who also has a sibling who shares the same name. Pak and Pak come in her room at night and cuddle with her but most of the time they kick her and she doesn't like it. She says the only way to get Pak and Pak to leave is to yell "Dance Party!" as loud as you can and then they will leave and then you have to dance. No joke-from the mouth of a 2 year old. Next time you see them feel free to ask them about their monsters. I just love to hear the kids talking more, its so fun!

Doin the Puyallup

2011-09-22T14:06:00.000-07:00

We were able to make it to the fair for a few hours. Rode a couple rides, visited with a few animals, saw a few shows and ate a few treats. The kids loved every minute of it.

Max was supposed to share his turkey leg with his sisters. We couldn't pry it away from him

Molly got her first bee sting, must have been attracted to her yellow shirt

We managed to wear out the kiddos

Berry Pickers

2011-09-19T14:11:00.000-07:00

The kids have all enjoyed picking berries this summer. Since I have such handy helpers I told them that I would make goodies with all the berries they picked. They picked blackberries, blueberries, strawberries, and raspberries this summer. Then they helped me make jams, syrups, cobblers, and still had lots of fruit to freeze.

Corn Huskers

2011-09-19T13:40:00.000-07:00

In honor of the dawgs the kids helped us shuck and cook 100 ears of corn to freeze for the winter. Too bad it didn't help us win the game. =)

9th Infusion - IVIG

2011-09-19T10:56:00.000-07:00

We had a good infusion day today, met with his oncologist and had good numbers in labs. We had a good discussion about what our schedule will look like this fall. Our oncologist is off to start her teaching and conferences around the world for the next couple months so we won't have as easy access to her as we normally have, but we were able to discuss and plan out our CT scans, MRI Scans, Spinal Taps, and other tests to gear up for in the next couple months. We have follow ups with all of the different disciplines that follow Max while our oncologist is gone. We did have some minor issues with medications today and I am glad that I am an informed parent, there are so many things that could go wrong if you aren't paying close attention. Today was also Madison's first day of preschool so she was able to join us in the afternoon and tell us all about her first day.

Playing with Lego Mack our favorite toy while getting infused

Madison telling us all about her first day at preschool

Our visit with Puss in Boots from Shrek

Chelan

2011-09-10T21:52:00.000-07:00

Twin Beach Bums

We had a nice labor day getaway in Chelan with my family. We enjoyed great weather, lots of swimming, enjoying the sun, berry picking, bike riding, water slides, and fun hanging out with the family.

Summer Fun!

2011-08-26T08:04:00.000-07:00

We had so much fun with our friends from New Zealand while they were here.

Picnic at the Falls

2011-08-21T22:11:00.000-07:00

We enjoyed a nice picnic lunch at Snoqualmie Falls this weekend. The kids had fun exploring and taking in the beautiful scenery while Dad enjoyed the line up of fancy cars.

Ports

2011-08-19T10:43:00.001-07:00

We had an eventful and somewhat tramatic access of his port this week. We had a nurse in a different department that must not have been used to accessing pediatric ports that had a really hard time accessing Max's line. She had to deaccess and try again 3 times. They couldn't get blood out to get labs and were having a hard time getting the saline in, I was so focused on trying to keep Max happy and distracted that I wasn't realizing what supplies were being used. They didn't prep his skin with the normal protectant that they use and they used the wrong type of tegaderm which caused the skin on his chest to get ripped off with all the unsuccessful tries. They tried for almost an hour to get it fixed and I didn't realize how tramatic it was to Max until we were all done, Since then he has complained of his port hurting and having "owies" in his chest and neck. I had to take him back in to the hospital to get x-rays the next day to rule out an issue with the placement of his port and to keep an eye on an infection getting started in the port. He also was running a low grade fever and having some stomach issues. We know that you don't mess around with those things and are so glad to get confirmation that everything with his port seem to be okay. The fever and stomach problems seem to have been an unrelated issue with some new medication that he is taking.

Just a tramatic experience for Max. We had another access done yesterday and he acted like a wounded animal, wouldn't let anyone touch him, and was so cautious of the nurse trying to do anything. I couldn't help but laugh at him as he kept reminding the nurse to get her "glubs" (gloves) on and to make sure to flush with "hepin" (heparin). I am so bummed that he had to endure that, he has been so good and now it seems we have backtracked a little and will need some more time to gain some more trust.

His port has been so nice to have, usually it is so easy to access and deaccess and with all the labs and infusions he gets it shaves tons of time off our schedule. It lies beneath the skin in his chest and is hardly noticeable. Little Molly is just fascinated with ports and doesn't understand why her twin brother and grandma have a port and she doesn't. We are trying to convince her that a port is not a normal thing to have. =)

9 month CT Scan

2011-08-19T10:06:00.001-07:00

I love receiving good news these days! God continues to bless us with another report of a cancer free scan.

Max is such a trooper. He was having a great morning even after having to fast and not drink anything for 12 hours he was still in a good mood. We arrived before 7am and Max drank 8oz of contrast liquid without even a complaint, it is such a nasty thing and he was able to keep it down with only a few gags, so I asked the anesthesiologist if we could try the test without the use of anesthesia this time. We have run into many issues with Max not reacting well to the anesthesia and they agreed that we could give it a try and if it didn't work they would have the team ready to knock him out. I couldn't have been more proud of him today. He did everything that was asked of him and laid completely still throughout the whole scan. They even had to inject him with another contrast dye during the middle of the test. The whole radiology team was in awe of him and said they have never had a 2 year old able to do what Max did. They rewarded him with a big red stuffed warthog, which he was really excited to give to Gus the puppy.

In Memory of William Barton

2011-08-09T13:38:00.000-07:00

William Barton passed away unexpectedly on July 31st, 2011 after a sudden stroke while camping, fishing and hiking with his family in the hills of Idaho. A memorial service was held on August 9th. We will all miss him greatly. Here is a brief slideshow of his life:

Remission?

2011-08-01T09:00:00.000-07:00

So many keep asking if Max is in remission. The answers we are getting from the doctors is that Max is still considered a "partial remission". While we have had 2 clear CT scans, he appears to be cancer-free, but his body/immune system seems to still be fighting something in his body. So we are still trying to get OMS under control and full remission requires him to be off all of his medication. After much discussion with many different doctors and specialists we have come up with a plan to decrease his medication slowly over the next 7 months and continue to monitor him closely for new symptoms, as new symptoms crop up we may need to extend that time, but God willing we will get all our prayer warriors on board and who knows we could surprise those doctors again and get him weaned off sooner. He will continue to get his IVIG infusions every other month until we are off of our clinical trial (hopefully in 6-9 months) and than we will have more flexibility to give him more infusions depending on exposures to germs around us and as we see flair ups of symptoms.

Uncompensated Care

2011-07-26T14:22:00.000-07:00

We were blessed this week with a confirmation that our family will be eligible for help from Seattle Children's Uncompensated Care Fund, which will help cover expenses that our insurance doesn't cover completely. We will be eligible for this help for at least another year. We are so lucky to have an amazing children's hospital so close to our home, as much as we hate the 1-2 hour commute, we truly are so lucky that we don't have to travel to a different state for all of our appointments as so many families we run into do. I had the opportunity to visit with a new mom of twins, who had one twin diagnosed with leukemia. They live in Alaska and she has had to move into the Ronald McDonald House with her brand new twins while her husband is at home working. My heart goes out to these other families that live far away or have language barriers. We have such an amazing support system here, we can't imagine having to move away, but I am confident that God would continue to provide for our needs should that time come. Thank you to all of you who continue to pray for our family!

Motor Testing

2011-07-25T21:30:00.000-07:00

Max had a bunch of motor testing recently. He did a great job imitating all the tasks that were asked of him, lots of stairs, balance tasks, walking, running, jumping and fine motor tasks like stacking and lining up blocks, stringing beads, coloring, etc. He did an amazing job! When we tried to do this test 6 months ago he wasn't able to even complete it, he was so fussy, clingy and uncoordinated he wasn't able to finish even one task. What a huge accomplishment for 6 months. The best news of all is that he was finally testing at an age appropriate level.

Physical Therapy Evaluation

2011-07-22T10:38:00.003-07:00

It is amazing to think back to this fall when Max was hardly able to walk, sit up or crawl without shaking or tremors and now to see all the progress that he has made is truly a miracle. After all of his testing we re-evaluated all of the goals that he has been working on with both physical therapists that he sees regularly both at home and at Children's Hospital.

Here are a few of the goals that we made last fall and where he is at:
1. Walk and run around home falling less than 5 times per day - goal progressing still has a ways to go.
2. Max will go up stairs with alternating feet using railing or wall for support - goal met
3. Mas will go down stairs with a step-to pattern - still working on but Max has the ability to do this if he has a verbal or tactile cue to remind him.
4. Max will demonstrate the ability to move from lying on his back to sitting without using hands or rotating his body - still working on - lots of ab and core work
5. Max will kick a ball forward 8- 10 feet - still working on - now up to 2-3 feet without falling.
6. Max will demonstrate the ability to jump up off the floor 1-2 inches independently - still working on - getting close.
7. Max will demonstrate the ability to jump forward 2-3 inches - almost there - still working on

New goals - We will continue to work on previous goals and add the following ones:

1. Max will demonstrate improved balance by standing on an unsteady surface independently while performing a fine motor task for 5 minutes
2. Max will demonstrate improved balance by walking forward 3 steps on a 4 inch line or curb
3. Max will demonstrate improved balance by stepping over 3-5 inch toys or objects on the floor independently.

According to his therapists Max continues to present with deficits in balance, strength, and coordination related to his diagnosis of OMS and his balance and stability can change from week to week depending on where he is at with his medication.

We will begin videotaping him weekly doing the same tasks to watch for changes in symptoms. We are also supposed to start counting all the times Max falls or just tips over during the day. This becomes difficult to watch since we usually lose count before breakfast, but we are going to start playing games with the kids to try to make it a fun thing to keep track of your falls. The other major emphasis we are going to focus on is safety. Trying to keep him as safe as possible in his surroundings by giving him tools to use when his body is feeling out of control. One of the side effects to his medication is decreased bone strength and it can make bones very brittle. Not a good thing for an active little boy with balance issues to have to deal with. So far God has protected all his little bones and we haven't had any major accidents. Given all the times he falls - this is a true answer to prayer.

Hormones and Growth

2011-07-21T18:46:00.001-07:00

We had another checkback with endocrine this last week to do another growth and hormone check. All seems to be well no issue with diabetes and other hormone imbalances.

Our current goals is to try to taper Max's doses to a manageable level, however it has proven to be a much bigger deal than we originally expected. He is currently at 8mg a day. A manageable dose for his size would be 1mg every other day.

Over the last few months everytime we have tried to decrease the amount his OMS symptoms flare up. It is also possible that his lone adrenal gland is not waking up the way we expected and when we are decreasing his medication his body isn't making up the difference. When this happens older kids complain of extreme fatigue, muscle pain and weakness and an overall sense of feeling yucky.

Growth: Max has dropped from being in the 95th percentile to being in the 7th percentile, but he is still on the charts which is a good thing. The doctor thinks he will have grown 2.2 cm this year, an average kid grows 10.5 cm per year. At 27 months he is still wearing 12-18 month clothes and his twin has outgrown him by 6 pounds.

He will be eligible for receiving growth hormones within the next year, if we can get him weaned off his medication. Until he gets taken off these drugs he won't have any more growth. The discussion that needs to occur with all of his doctors is whether or not this is a good idea. Growth hormones are natural hormones that every one has, but when given artificially it is a nasty shot that would have to be given daily at home. It would also stimulate his whole body to grow quickly including any cancerous cells. The best thing that we can cling to right now is that he has many years ahead of him to catch up and a faithful God watching out for him.

We would love prayer so that we could get him off his medication soon so that he could start growing and reduce the long term side effects.

Speech Update

2011-07-21T18:05:00.000-07:00

If you haven't been around Max in awhile you would be surprised to hear everything that is coming out of his mouth. Of all the therapies he is excelling the most in speech. We did our six month evaluation to review the goals we set out for him with both of his speech therapists, and it is such an answer to prayer to see all the goals he has met and surpassed in the last 6 months.

Here are a summary of a few of the goals we set/met:

Max will add 10 new words to his vocab = goal surpassed
Max will use pictures and communication boards to communicate needs = goal met
Max will use words, signs and pictures to request objects/actions, protest, comment, call for attention, ask and answer questions. = goal met
Max will improve functional communication by answering yes/no to questions = goal met
Max will imitate 10 names of family members = goal met

Since he has excelled on all these goals he has graduated from seeing the speech therapist at Children's for the summer. We will continue to meet with our early intervention speech therapist in our home weekly.

We have established the following goals for Max to work on the next few months:

Max will begin asking and answering "wh" questions: Where is... Who is... What is...
Max will improve expressive language skills to say 30 different phrases of 3 or more words
Max will begin adding - ing to his verbs - hiding, eating, running, etc..
Max will improve speech skills by producing k/g phenomes in intial and final word positions: frog, fork, go, cup
Max will improve speech skills by producing words with 3 syllables: Elephant, Crocodile
Max will produce 10 words off of our families functional word list and family names
Max will indentify and label 3 different emotions: Happy, Mad, Scary

It is such a blessing to know that he has the language skills and cognitive ability to meet these goals, now we just need to get the muscles in his mouth to perform the way he needs them to.

Feel free to quiz him the next time you see him =)

8th Infusion - IVIG

2011-07-19T22:15:00.000-07:00

Max getting his infusion all by himself no longer needs to sit on mom's lap

Today after flying in late last night Max and I made it to the hospital prepared for a long day. Max is such a trooper, today he became even more independent. He got his port accessed and labs drawn all by himself without sitting on my lap or even shedding a tear. He is ready to conduct his own clinic visits, he can weigh himself, measure himself and get his blood pressure tested without even being asked. We were at a specialist appointment last week and the dr conducted the normal exam, but didn't check Max's ears, before the doctor left the room, Max walked over to him grabbed his light and put it in his ear reminding the dr that he forgot a step. Today was no exception, now that he knows what to expect he was the ideal patient. We have had a lot of tests and appointments the last couple weeks as we are finishing up his 6 months checkups with all the different disciplines. I have a lot to update on the blog and will try to start adding updates as I can on all the details we are finding.

5 minutes later, he curled up like a puppy and took a snooze.
Slept right through his vital signs being taken every 10 minutes

Dad got to come for a quick visit on his lunch break and
we got to hang out with Aaron our favorite infusion nurse.

Chicago Wedding Weekend

2011-07-19T21:21:00.000-07:00

A huge thank you to all those who helped us the past week with the kids so that Josh and I could make it to a good friend's wedding in Chicago. We had a wonderful time! Kari loved the hot weather, Josh not so much. It made it to almost 100 but with the humidity the heat index was a lot higher. Josh served as the best man and entertained the audience with a memorable, humorous and touching toast. While it was a busy weekend with wedding events, we were able to get out a little bit and sightsee and most of all take a breather from life. Congrats Brent & Jess!

Our Favorite Family Service Representative

2011-07-19T21:11:00.000-07:00

We have not given Children's Hospital enough credit for all the wonderful ways they are taking care of Max and our family. Somedays it can be really tough being surrounded by chronically ill children battling cancer and other life threatning diseases, but there are people like Jessica Spencer who brighten our days. Jessica takes care of our family by being responsible for scheduling all of our various appointments for all the different departments throughout the hospital. She works so hard to get us a schedule that limits the amount of time and days we have to be at the hospital. She juggles so many doctors busy schedules and tries to make it so we can have a life too. We can't thank her enough for her patience, I will call her several times a day trying to rearrange things and making sure we have all of his labs, therapy appointments, tests, anesthesia, doctors, nurses, dieticians, and all the other appointments Max has to have and she always has a great sense of humor, attitude and is quick and professional. Max also loves visiting Jessica, he has on several occasions seen her from a distance and will yell her name through the crowd to say Hi. She is always able to get a big smile out of him. We found out she will be leaving us at the end of this month, and while we are excited for her new opportunities, we will miss her greatly! Good luck Jessica!

Beads of Courage Update

2011-07-19T19:37:00.000-07:00

Today we filled Max's 3rd necklace full of beads of courage. The girls have had fun helping him with all his beads. The last two weeks have been full of appointments, its been busy but at least we keep earning all these cool beads. For those just joining us you can catch up with our first post about the beads of courage program here. He has earned 148 special beads in the last 7 months for all the challenging procedures, tests, and pokes, he has had to endure.

Molly showing us her favorite bead.
It's an iron bird to symbolize all those wingmen out there supporting Max with prayer.

Yet those who wait for the LORD
Will gain new strength;
They will mount up with wings like eagles,
They will run and not get tired,
They will walk and not become weary.
Isaiah 40:31

4th of July at the Beach

2011-07-07T21:40:00.000-07:00

We were very blessed to share the fourth of July weekend with good friends at their beach house on Hood's Canal. The family had so much fun exploring the beach, crabbing, boating, tubing, hiking, and hanging out with friends and family. We were spoiled with amazing seafood - 42 crab opening weekend. The kids loved every minute of it.

Children's Dental Clinic

2011-06-30T15:07:00.000-07:00

Max had a great dentist appt at children's hospital's dental clinic, they were able to exam and clean everything, Max was extremely compliant. The dentsits also reminded me about the importance of good dental hygiene with Max. While his chemotherapy did a great job getting rid of bad cells it also halted the production of good cells that keep his teeth and gums strong and healthy and also help with the production of his permanent teeth. Chances are Max will be living with his baby teeth much longer than normal kids.

Luckily, they were also able to locate four very swollen and painful molars that were trying to make an appearance. Since the appointment we have had one pop through, we are all anxiously awaiting 3 more to come in =)

Neuro Exam

2011-06-27T13:46:00.001-07:00

We had a nice meeting with Max's neurologist, it was our first appointment where we didn't have residents, and other students involved trying to learn more about Max, and we could discuss issues a little more casually.

We have two different neurologists involved in Max's care, One is the the director of pediatic neurology at Swedish and one at Children's, both have seen at least one other patient like Max in their careers. Although each case is completely different, it is really hard to know what is the best treatment plan, everyone has a different opinion. We were able to discuss other protocols, however since we have not been able to wean Max to a manageable dose of steroids yet, we are really stuck in the protocol that we are in. The neurologist has done a lot more research and discussed Max's case with other neurologists around the nation, one of the issues that we are also facing is that Children's Hospital doesn't have the materials or labs to be able to follow someone else's treatment plan, so it would require us to fly to another institution frequently. We really need this treatment plan to work so that we don't have to find a different hospital. We would really appreciate your prayers for this and if we do need to consult another institution the timing would be very clear to us as parents.

Weight and Teeth

2011-06-27T13:41:00.000-07:00

What we thought was the beginning of some nice weight gain for Max turned out to be nothing more than an extra full diaper last week when he was getting his weight check. When we checked again on Friday he "lost" another .3 kg. I have no idea where all his food is going...

We also got confirmation that his 2 year molars are coming in and could be adding to his increased fussiness lately. Molly's molars also made an appearance this last week. We hope that these teeth come in quick, teething twin toddlers are no fun at all. But it is a relief to find a reason for all of their fussines. Max has an appt at Children's dental clinic this week so hopefully we will get confirmation that they are all in =)

Cognitive Assessment

2011-06-24T10:50:00.000-07:00

I had a nice discussion with the child physcologists that have administered Max's neuropsych testing the last couple weeks. They were very pleased with the cognitive acheivements Max has made in the last 6 months. They have seen significant developmental growth in all areas which isn't always the case with kids undergoing chemotherapy. They reported that he was performing at age appropriate levels in all areas. He performed great in his understanding of language and is lacking slightly in his expressive language skills. Which means he understands more than he verbally shares with us, which we have always known to be the case. They encouraged the continued use of early intervention therapy and will continue to closely monitor him. They said that chemo effects on the brain can happen down the road and so it is important to keep up with regular monitoring.

It was so interesting to observe all the tests they performed last week. It's amazing to see all the test they can do on a 2 year old to assess how his brain is functioning. I was allowed to be in the testing room and he was allowed to sit on my lap, but I could not encourage, reword any questions, or respond to him in any way. He had doctors watching on the other side of the 2 way glass in the room next door and tried to assess how he approached different tasks. Lots of puzzles, books, pictures, pretend play, etc. I am not sure how accurate some of the scores really were, because the examiner would ask him to do something and he would flash his cheeky smile and do the exact opposite and watch her for a reaction. Several times she couldn't help but laugh because she knew he was trying to tease her and she didn't know how to accurately grade those tasks.

We still have his gross and fine motor assesments coming up next week and a neurological exam this afternoon. Thanks for the continued prayers, it is so nice to get good news and see all these answers to prayers.

Ocean

2011-06-22T09:08:00.001-07:00

We had a chance to getaway to the beach for a couple days last week. It was so nice to do something fun with the whole family. The kids enjoyed horse rides on the beach, playing in the sand, flying kites, swimming, going on hikes to checkout cool lighthouses and just hanging out.

Papa and Max

Grandma and her girls

8th Infusion - Cancelled

2011-06-20T21:05:00.000-07:00

Today we spent the day in the clinic getting checked out. Max has had a flair up of a few symptoms the last couple weeks. He has had some increased fussiness and irritability, he has become more clumsy and out of control at times, and his therapists have noticed some increased changes in how his body is trying to compensate for his lack of balance and coordination. He has been clenching his feet when he walks on the floor to try to keep more balance and has been doing more leaning on items to gain support and doing a few other things with his body to compensate. They have had some concerns about his safety, so we have gotten rid of the baby crib and have him sleeping on a mattress on the floor for now until we can slowly work him into a more permanent big boy bed and are trying to be more careful when his body is feeling out of control, so we don't have any major accidents.

We found out last week that Max was going to be due to skip an IVIG infusion this month, which was a surprise to everyone including the doctors and nurses. There was some question about whether he was ready or not and after discussion with his oncologist today, we went ahead and skipped it for this month only so we could follow the protocol. We did go back up on the steroids to try to curb these new symptoms in hopes that us tapering his medication is what caused the change. If he doesn't improve in the next week or so then we will go ahead with the IVIG infusion. The problem is that one of the goals of his clinical trial is to see if IVIG really make a big difference with this disease and for us deviate from the schedule would cause a trial violatioin and could invalidate some of the research they are gaining on Max. So before we violate anything we want to make sure this flair up can't be controlled by other means. We are going to keep a close eye on him to watch these things and hopefully this medication change will fix everything and we can continue as planned. We appreciate your continued prayers as we try to figure out what is best for Max. It is really hard to know as parents how to advocate for your child, we want to try to help gain more research on this disease but are hoping we aren't sacrificing Max's health. We did discuss that in the future once we get the steroids down to a manageable dose that we will be allowed to treat Max with an IVIG infusion at the onset of new symptoms without any hassles from clinical trials.

Some good news we learned today is that Max gained .2 kg!! First time he has gained weight in 7 months. The doctors are monitoring his blood pressure and did some more glucose testing to make sure we aren't taxing anything, there could be some potential issues with him developing temporary diabetes which we could treat with insulin if needed. His hemoglobin and hematocrit were low, but with the amount of meat Max eats we aren't too worried about that. One of his favorite two word combos right now is "More Meat!" I think he could eat big steak every night if I would let him =)

Sorry for the delay in getting posts up, both our camera and laptop have been on the fritz lately, hopefully we will get everything up and running and can keep everyone updated more regularly.

OMSlife - A support and love site for children, families and friends, battling OMS

2011-06-18T10:48:00.000-07:00

We received a very nice letter this past week from a grandfather who has a granddaughter, Alexa, fighting the same battle that Max is. He was very encouraging and supportive for what Max and our family have been and will be going through. He and his family are working on connecting more patients, families and friends dealing with OMS to bring more knowledge of this disease in hopes that we can someday bring a cure. If you have a minute we would encourage you to check out their website. It includes great features and they have compiled lots of information on this rare condition, and if you have tissues handy and feel up to the challenge check out the videos. We have been asked by doctors to put together video footage of Max as well, but I don't think we are emotionally ready for that challenge yet. Hopefully soon...

http://www.omslife.org/

Congratulations Madison!

2011-06-06T09:07:00.000-07:00

Congratulations on a successful year of preschool!

7th Infusion - IVIG

2011-05-26T22:09:00.000-07:00

Monday was spent at Children’s hospital receiving his first dose of the IVIG without the chemotherapy mixed in. He did great, it was a shorter infusion time but with dr. visits and labs, still ended up being an 8 hour day for Max. He enjoyed visits from Grandma’s, movies, coloring, visiting with other kids getting infusions, a leisurely lunch and a snooze on grandma’s lap, he was so tired the nurse was able to de-access his port and rip the tape off without even waking him up. He did really good getting the infusion and had a couple days of being clingy, feeling yucky and extra tired. The IVIG infusion cans still cause side effects like headache, flu like symptoms with achiness, fatigue and others. Overall he did so much better without the chemo. We have even noticed an increase in his appetite since the chemo effects are wearing off. The steroids make him crave salty foods, so I have been trying to limit him from too many snacky foods. Anyone have ideas of healthy food that might satisfy his sodium desire?

6 Month CT Scan Results

2011-05-26T21:49:00.000-07:00

Great News! Max’s 6 month CT showed NED – No Evidence of Disease or Metastasis! Thank you for all your prayers!!

With the news of a clear CT scan we were able to make a schedule for the next month. We will still continue to be seen weekly at the hospital on Mondays for labs, nursing visits, oncology appointments and speech and physical therapy. He will have other checkups with other providers like neurology, endocrinology, dental, and neuropsych sprinkled in on other days in the next month.

Bash For Max

2011-05-22T21:56:00.000-07:00

The Bash for Max Benefit held on May 21^st was a huge success. It was an evening full of great food, music and fun from all involved and a warm spirit of help and healing permeated the event. We feel so blessed to have such a great community surrounding us and letting us know that we are not alone in this journey

The night consisted of an incredible silent auction with over 100 donations from individuals and businesses in our community, a great dinner donated by King’s Manor Senior Living Community in Tacoma, awesome cupcakes made by Stacy Gibson of Graham & Graham Eldercare and live music by Doug Deems & friends. The evening was a huge success with over $15,000 raised after the matching grant from Thrivent Financial. The great turnout and outpouring of support, prayers, and good wishes from all was a true blessing to our family!

We would like to send out some special thank you’s to those who made the event possible. Karen Wright had the idea to do something to bless Max, after organizing several other events, “A Bash for Max” was born. She put in countless hours organizing the location, volunteers, selling tickets, acquiring auction items, and planning the whole night! Thank you so much Karen, words cannot express our gratitude! Nicole Coit, the Administrator of King’s Manor, did as much work and orchestrated everything behind the scenes. Thank you so much Nicole for everything and to all the King’s Manor staff who played a huge role in the success of the night. To Kristi, Sheri, Theresa, Natalie & Oscar, thank you so much for donating all of your time & to help to make everything run so smoothly! There were so many people that helped with the planning, setting up, serving, parking attendants, cooking, decorating, praying, selling tickets, fundraising, acquiring auction items, filling the seats, cashiering, cleaning up & I am sure doing a lot of other things. To everyone that helped in any way…THANK YOU!

A sincere and heartfelt thank you goes out to all those volunteers, friends, family, colleagues, and businesses who attended and participated to make the evening such a special event and celebration! Again we couldn’t have made it through all this without all the support, prayers and help from each and everyone of you. Thank you for rallying around Max and our family to help us through the last 6 months and your continued support for the big plans that God has in store for Max’s future.

Max Facts:

2011-05-19T23:41:00.000-07:00

Max has Stage 2b Neuroblastoma Cancer (Malignant tumor of the Adrenal Gland)
Max also has an extremely rare Neurological autoimmune paraneoplastic syndrome called OMA (Opsoclonus Myoclonus Ataxia)
600 kids a year are diagnosed with NB (only 5-6 with OMA)
OMA causes body jerks and abnormal eye movements, ataxia (tremors, shaky, low muscle tone, learning and behavior problems, and speech impairment.)
OMA symptoms may return during illness, fever, stress, sedatives or anesthesia, tapering or discontinuation of immunotherapy, and after immunizations.

· Relapses of OMA are common and may be treated with additional rounds of chemotherapy, steroids, and blood product infusions.

· Checkout Max’s Beads of Courage – He collects beads for each procedure, appt, and poke he receives.

· Max has seen 42 different doctors or providers in 6 months

· Max had 106 Dr appointments at Children’s Hospital since Nov.

· 84 Speech/Physical/Occupational Therapy appts since Nov.

· He has 5 different therapists meeting with him weekly

· Has had 9 tests or procedures needing full anesthesia

· 14 overnight visits in the hospital/2 ER Visits since Nov.

· He can take up to 9 medications twice a day

· He will get monthly infusions through the port in his chest for 2-3 more years.

· Max is now eligible for a wish from Make-a-wish foundation.

Bash for Max

2011-05-04T10:02:00.000-07:00

You are cordially Invited to

A Bash for Max

fundraising event to benefit Max Burt

and to help us celebrate his journey

Saturday, May 21, 2011, 5-8pm

Lighthouse Community Center

5016 A St.

Tacoma WA 98408

Spaghetti dinner

courtesy of King’s Manor Senior Living Community

Homemade dessert

by Stacy Gibson

(Graham & Graham LLC)

Live entertainment

courtesy of Doug Deems and friends

Silent Auction

More than 50 items including: Autographed memorabilia, restaurant and entertainment packages, season passes and tickets to concerts, family friendly events, amazing gift baskets, spa packages, and so much more!

donated by Local Businesses and

Health Care Providers of Pierce County Members

Suggested donation: $20 per person

or a table for 8=$150.00

Contact Karen Wright or Nicole Coit

King’s Manor 253-538-7222 or csm@kingsmanorslc.com

Donations will benefit the "Max Burt Benevolent Fund" and can be made at any BECU or mail/drop off checks to King’s Manor Senior Living Community

8609 Portland Ave. East, Tacoma WA 98445

Go Huskies! Spring Game

2011-05-01T21:24:00.000-07:00

We had a beautiful day to enjoy our favorite things, hanging out with the family and watching the huskies. We even got to enjoy a free hot dog lunch, a bounce in the blowup husky helmet, face painting, and a fun time watching an exciting game.

Chemo - Round 6

2011-04-25T22:05:00.000-07:00

We turned Max's hospital room into party central today! Who knew chemo day could be so fun. Max and Molly officially turned 2 and we had deliveries of fun gifts, food, balloons, friends and family all day. Molly and Maddie even made it up for a visit to share a birthday lunch together. The oncology infusion staff had a big bag full of presents waiting for him this morning to celebrate his birthday. Even though we had a full day of apointments, chemo, and lots of fun - he was still able to slip a little nap in.

We got the next few week's worth of oncology appointments scheduled today, including his next CT scan, his 6 month neuropsych test, and his next IVIG treatment. He will continue to get infusions of this blood product to wash his blood and get rid of the nasty antibodies for the next couple years. We are also going to try to taper the steroids a little slower starting today. While you may think that having chemo in the hospital on your birthday may not be fun, it will sure be a memorable day for our family and a milestone in Max's journey. We are all very excited to be done with the chemo portion of his treatment and trusting in the Lord for the future.

The final chemo - celebrating as a family at the hospital!

Clinic Visit

2011-04-12T09:03:00.000-07:00

Max must have overdone it this weekend, he developed a cough and some congestion in his lungs. We are hoping that it is just a touch of something minor. Labs were low again yesterday. Max got a nasal wash done on him at the clinic yesterday and they suctioned all of the fluid they could find. It is being tested right now to see if he needs to go on antiviral medication. We need to keep him on the higher dose of meds for another two weeks to make sure he gets over whatever he may have picked up and that he doesn't develop any more neurological symptoms. So far so good, we are praying that he gets over this quickly. We have another appt with a neurologist today.

Weekend Fun!

2011-04-12T08:52:00.000-07:00

Fun day working in the yard as a family

Thank you Fairy God Mother!

Who would have thought eating an ice cream cone could be so funny?

Endocrinologist and Adrenal glands

2011-04-07T15:09:00.000-07:00

We met with an endocrinologist this week and it was very interesting. Since Max is missing his one adrenal gland his other one was trying to compensate and then we threw a bunch of nasty medication at it and the endocrinologist said that his other adrenal gland has shut down and is no longer working. This makes a lot of sense when looking at some of the odd side effects that he has been having. The steroid dose that he has been on for the last 4 months should have made him gain weight and swell up, instead Max has had the opposite reaction, he hasn't been eating great and hasn't gained any weight. The endocrinologist thinks that Max is having a wasting effect where he may be losing muscle tone instead of gaining weight like so many patients on steroids. He seems to also have some hormonal imbalances since he doesn't have an acting adrenal gland, this lack of hormones is what is affecting his appetite and thirst center, and growth and who knows what else. The adrenal gland produces hormones for growth and development, metabolism, and cortisone, as well as to supplement all your other glands (pituitary, thyroid, etc.).We are running some more tests the next couple weeks to get a handle on what is going on with all his other glands as well. We really need to start tapering his steroids to get him to a level that won't give him long term side effects, but it is going to be a tricky balance to keep his neurological symptoms in check and to slowly try to revive his lone adrenal gland. We appreciate your continued prayers, we will keep you posted on the results...

Happy 4th Birthday Madison!

2011-04-06T21:14:00.000-07:00

Care Conference

2011-04-05T22:10:00.000-07:00

We appreciate all the prayers for our big meeting on Tuesday. It was extremely helpful to regroup with all the members of our multidisciplinary medical team. There were 10 of us and 4 others who had submitted up to date reports and had representatives available to speak for them. Here are some key topics that were discussed:

* Evaluation Criteria - Max is progressing nicely with his treatments, it was agreed that he is not in full remission yet, but has had a partial response so far. We are glad to hear this and hope to continue to have steady progress, doctors think that the response he has had so far will make his long term outcome favorable.

* Tapering Schedule - It is going to be very critical that we keep a close eye on Max the next couple months, we really need to get his dosage of steroids tapered down to a more manageable level to limit the long term effects that Max will have from the high doses of steroids, but it is a fine line because as we lower the dosage the neurological symptoms may crop back up and we have to do it slow enough to make sure we try to get his adrenal gland the chance to come back to life. We have the doctors word that we will listen to Max's body and go at the rate Max can handle instead of following the clinical trial's suggested schedule.

*Relapse - We discussed courses of treatment and what medications we will use when Max has relapses. He isn't out of the woods quite yet, it is going to take some time for his body and immune system to recover from chemotherapy and because of his autoimmune condition he will continue to be at risk to have a relapse with every cold, virus, and infection that he is exposed to.

*Chemo and Infusions - Max will receive his last dose of chemotherapy on his 2nd Birthday (April 25th). He will continue to have infusions at Children's Hospital for up to 2 -3 years, with the goal to be done with infusions in time for Max to go to school. There will still be side effects of the infusions and it's hard to know at this point what they will be since he has been having them along with the chemo.

*Future Tests and Monitoring - Max will continue to be followed very regularly by all the disciplines he will have another CT scan next month and then will continue to have scans every 3 months to watch for the reoccurance of the neuroblastoma. He will also continue to have cognitive testing, neurosphychological testing, and testing to make sure he continues to stay age appropriate for all his developmental milestones. There are so many blessing to having twins and for me it is a daily blessing to be able to compare Max and Molly and the new skills they are both making. I think I would be a basket case always wondering if he was falling behind.

*Speech Therapy - He is making excellent progress relearning to speak. He is beginning to link words together and combine signs and words. He still has ataxic dysarthria and apraxia (slurred speech and issues wtih motor control). He is quickly learning words so we are going to up the amount of times he is seen by speech therapists to make sure we stay on top of all the new skills he is learning and to make sure we as parents can learn how to work with him at home to make sure he is correctly learning these skills.

*Occupational and Phyiscal Therapy - He is also excelling in his OT/PT, we will continue to be seen by therapists at Children's and in our home therapy to make sure Max stays above the curve in all his motor skills. We are really focusing on his fine motor skills and we are all keeping a close eye on his tremors and developing strategies for managing the tremors.

*Vaccinations - I have appointments for all 3 kids to get well-child checkups this month. We will need to hold off on Max getting any vaccines for the time being because of his current condition and immune system, and maybe even hold off on a few for Molly and Maddie. We will put them on a new schedule to get them caught up in time for school.

We discussed progress in other areas including genetic testing and insurance issues. Max is such a sweetheart and sat through the care conference and said "thank you, bye-bye" to each medical professional individually. He is such a joy to work with and has such a positive attitude through it all, I love watching the smiles he brings to everyone he comes in contact with.

Chemo - Round 5

2011-04-02T23:37:00.000-07:00

It's amazing to think we might only have one more round of chemo left! Max did great again today he was much more cuddly and less active which made sitting still all day much easier. Since our last change in medication Max has had some more noticeable tremors that his therapists have picked up on, some more sleeping isssues, and has become slightly more clingy lately, and he also had a big drop in his blood counts. We have made the decision to up Max's steroid dose for the next couple weeks to see if it changes anything. We will be watching carefully to see if there is any changes the next couple weeks and then we will begin to decrease the dosage much slower this time. We have an important care conference coming up this Tuesday with all of Max's doctors, specialists, nurses, therapists, social worker, counselor, etc. to discus his progress, his future, and to make sure we are all on the same page. We have also been in conversations with a pediatric neurologic hospital in Illinois to discuss a different treatment plan. We have a lot of decisions and key events coming up that we would appreciate your continued prayers.

I didn't get a chance to take pictures during today's treatment, but here a few pics from past treatments:

Beautiful Day at the Zoo!

2011-03-25T22:29:00.000-07:00

We were able to enjoy a beautiful day at the zoo last Saturday. All the animals were out entertaining the crowds, we all had a great time getting out and doing something fun as a family. However it was a much different visit from the last time when we were there a couple months ago. Max is doing so well that he is able to keep up with the girls and now we have 3 little independent kiddos running in all different directions. We broke out the leashes to help us manage the chaos.

Max and Molly loved watching the penguins!

2nd Insurance Update

2011-03-03T22:26:00.000-08:00

We haven't made a lot of progress since last month. Our Oncologist has enlisted the help of colleagues around the nation to agree that the medication Max is taking is medically necessary and we are hoping it will help build our case. The hospital has also helped us by gaining the help of an attorney to represent us and the doctors with all the communication between Regence. This will be a huge relief for me so that I can focus on being a mom and caregiver and not on the legal research and negotiations that go back and forth.

We also made the decision to change our insurance plan, we have found a better plan through Josh's work that actually advertises that they cover clinical trials. We only had 4 days to research and make the decision. We are hoping that a change at this point in the year will pay off, it should give us slightly lower monthly rates, co-pays, a lower stop-loss for the whole family, and better benefits. We have already maxed out our benefits from January, but this was the only time we could change with Josh's open enrollment. We are in process of starting over on all the pre-authorizations needed for all of Max's expensive drugs and procedures. We are hoping that all this work will pay off and this new plan might make life a little easier for us. We might even qualify for a grant through the insurance company that helps hard working patients who fall through the cracks with private health care insurance. We appreciate your continued prayers as we step out in faith with this new plan.

Chemo - Round 4

2011-03-03T11:21:00.000-08:00

I am so sorry that it has taken me so long to add another post, I know everyone has been waiting for an update, best to assume that no news is good news=). Max's scan came back good, there were some suspicious spots in the lower lobe of his lung above the original tumor, but not enough to determine that the cancer has spread. The oncologist discussed the findings with the radiologists and determined that we would just watch it to see if it changed at his next scan. It could also be shadows where Max may not have taken a deep enough breath or scarring from the surgery, etc. Needless to say we are not concerned. We also decided that now was the time to cut his steroid dose in half, this is a critical turning point in his treatment, we are watching very closely to make sure we doesn't exhibit any additional symptoms or relapses. The clinical trial requires that the symptoms have to progress over 3 days before we can disucss backing out of the study or getting permission to change the doses.

He did really well in this round of chemo, still a long day, but we got a really helpful and attentive nurse, I was a little better prepared this time and it paid off, Max received a higher dose of chemo on this round and got more nausea medicine, which made him a little more sleepy and we got him to take a nice nap.

We have so appreciated all the volunteers that help make going to the hospital a fun thing. One of the highlights of Max's day was his visit with the "Singin Chaplain", he shares his ministry with sick kids at Children's hospitals on Mondays, we have enjoyed his songs and visits to our hospital room over the months. Max had a great time tapping his foot and dancing along with his music today, Kelly also gave us a second cd to add to our collection. You can view more about his ministry at his website and read his touching story at: http://www.chaplainkelly.com/ and hear his story and interviews with komo 4 and king 5.

Dancing and Singing with Chaplain Kelly

3 Month Checkup

2011-02-25T14:00:00.000-08:00

Peek-a-boo!

It's hard to believe that it has been 3 months since Max's diagnosis of neuroblastoma cancer and OMA. We met with the team last week to discuss Max's progress and everyone is amazed at how well he is doing with all of his treatment. He is really excelling in the home therapy program, he is walking, talking and becoming more independent daily. He does so much better working with the therapists in his own environment as opposed to the clinical setting, however he continues to work with therapists at the hospital that deal with cancer kids. His oncologist and team can't be more excited to see his progress in all areas, he will have another round of Chemo on Monday and then possibly just two more rounds after that. The steroid regimen will continue another year and a half and they haven't quite decided how long he will have to get his infusions of IVIG, it could be 2 years or longer. A lot of the decisions depend on the scan Max had done today, he will continue to have a series of scans every 3 months to watch for the spread of the neuroblastoma. Today is the first one since his initial diagnosis. We will meet with the oncologist on Monday prior to receiving the chemo to discuss the results and to possibly order more tests depending on the outcome. From the outside Max looks like a normally functioning kid, however, he is still dealing with ataxia (tremors, instability, and motor control issues), slurred speech, and sleep and behavior disturbances (which is most likely from his steroid regimen). We are also keeping close tabs on his eating as he still hasn't gained any weight and making sure he continues to hit all of this developmental milestones. Overall we can't be more pleased with his recovery, we know God has been in control of it all and we can't thank you enough for all the prayers for Max. Keep it up!

Max waking up from anesthesia after his scan today

Snow Day!

2011-02-24T10:02:00.000-08:00

We got about 3 inches of snow overnight and by 8am the kids had successfully torn up all the snow and were wet and ready for hot chocolate (ok maybe just the marshmallows). The had lots of fun...

snow angels

Snowplow anyone?

Lots of fun sledding!

and snowball fights...

ER Visit - Fever

2011-02-21T14:14:00.000-08:00

After a successful wedding the night before, Sunday was spent in the ER as Max woke up with a temperature of about 103. Fevers in oncology patients are a big deal and require immediate attention, we called the dr and they had a room waiting for us when we got to the hospital. Max isn't allowed to have tylenol or motrin because it can mask symptoms that can help us determine there is an infection, so he was feeling pretty yucky! While Max is speaking better he is still not old enough to communicate what doesn't feel well, so we spent the day running tests trying to figure out what was going on in his little body that would cause such a high fever. Since we were around a crowd of people the night before it was difficult for us to narrow down any specific viruses or infections he may have been exposed to, his blood counts were off so we knew something was going on but we had to just keep guessing. While we were waiting he was able to get a bag of IV fluids to help keep him hydrated. Luckily we were able to rule out any serious bacterial infections and were told we need to watch and wait for more symptoms, we also were given permission to give 3 doses of tylenol through the night, but no more. As we were about to be discharged the nurse and I noticed something wasn't right with Max and found that the IV that was in the port in his chest must have dislodged and became stuck in his chest and his chest cavity had filled up with the fluids he should have been receiving. It was a little scary at first as we weren't sure what had happened. Luckily they hadn't hung any antibiotics yet and it was just saline. The doctors determined that he was going to be okay and the body should easily reabsorb the extra fluids within a week, but it did leave him with very swollen pecs and lots of bruising. It would have been a much bigger issue had it have happened with some other type of fluid. God was watching out for us today, and it was a blessing that this happened after the wedding so that we could all be a part of the ceremony and it was a nice wakeup call for us to continue to be cautious about our exposure to germs.

Wedding!

2011-02-21T14:03:00.000-08:00

Josh and I were so excited to be a part of the wedding party and share in the excitement as my brother, Kraig, and new sister-in-law, Stephanie, were married on Saturday night. They had a beautiful wedding that went off without a hitch! After lots of practice Madison did a wonderful job as their flower girl and felt like a true princess (she asked everyone to call her Sleeping Beauty instead of Madison for the day). She let us know that in her next wedding she thinks she is ready to be the bride. =) We can't be more happy for Kraig and Stephanie as they start their new life together, Thanks for letting us share in your happiness!

Molly's Successful Surgery

2011-02-15T12:32:00.000-08:00

Molly showing off her hospital bracelet after surgery

Molly did great today! We checked in early this morning and got her scrubs on and she got her second round of tubes placed. We had a last minute issue with her adenoids, our surgeon couldn't convice the anesthesiologist to go forward with the adenoidectomy because of Molly's size and age since they would have had to place a breathing tube and other instruments in the back of her little mouth. We have a checkup in a couple weeks to discuss rescheduling a surgery for her adenoids and tonsils once she turns two and is a little bigger. At least we were able to get the tubes in which should cut down on the ear infections for now. She was such a trooper, she left me in the waiting room and walked by herself into the operating room without crying or even looking back to say goodbye. She did good with the aneshesia and was fussy after waking up in a strange place, but was able to calm down after a little while. She is supposed to be tired and resting for the next 24 hours, but after a brief nap she is already back to her normal busy self. =) Thanks for all those prayers today!

Molly waiting for surgery with Papa in her scrubs

Tubes - Part II

2011-02-08T10:24:00.000-08:00

Molly in her scrubs getting ready to go into her first surgery

Since this is supposed to be a blog about the whole family I thought I would post a quick update on Molly. It seems little Max has had the majority of the issues the last few months, but little Molly has been struggling with her own issues. We had tubes put in her ears in August of 2010 and the tubes fell out and were removed after Christmas (kids usually grow out of them in 6-12 months) and she has had 3 ear infections since the beginning of 2011. Molly and I met with the ENT yesterday and we have her scheduled to have another surgery next Tuesday (2/15) to have new tubes put in her ears and to have her adenoids removed. Ear tubes are used to break the cycle of ear infections, allowing the ears to completely drain and ventilate. The drainage removes any fluid (and bacteria) in the middle ear, and the ventilation allows the lining of the middle ear to return to normal. The adenoids are lumpy clusters of spongy tissue, they sit high on each side of the throat behind the nose and the roof of the mouth. It is an organ in your immune system used to catch bacteria that you swallow and breathe in, but it is thought that is mostly used to fight infections such as worms or parasites that aren't as common in today's society. In Molly's case the adenoids have become more dysfunctional and infected and more of a liability than an asset.

Poor Molly has been struggling with fevers and pain that keeps her up at night with all these ear infections. Who knows what kind of bacteria her ears and adenoids are growing, so hopefully by getting this surgery done we will minimize the amount of germs around the house and hopefully get her through the rest of flu season without any more infections.

Insurance Update

2011-02-01T15:32:00.000-08:00

Many have been asking how we are coming along in our insurance battle, and unfortunately we don't have too much to report. Max's expensive infusion drug is still being denied and we have been through several rounds of appeals. The issue isn't that we are involved in a clinical trial but that Max's condition is so rare and there is no medical evidence to show which drugs really work, the best cases show that this drug has the best outcomes, but there is not enough cases out there to actually prove it. . The drug Regence won't cover is a very common drug that is covered for tons of other autoimmune conditions, but it seems that any drugs that we try to treat Max with will all be experimental because there isn't any protocols out there to follow. Last week the neuroblastoma expert at Children's had a peer to peer review with the insurance company to which no progress was made. We should be receiving a hearing date soon, where Josh and I and our doctors will be able to argue our case, hopefully it will be close to home so that we all don't have to travel. Both Josh and I are in the process of preparing a written statement and a statement that can be delivered at our hearing. Our doctors are trying to compile more information and medical evidence on Max's condition to provide to Regence. The problem is there isn't any! A response I received from a rep from Regence was that " we have never seen a diagnosis like this in all of our years and we will probably never see another diagnosis in our careers, so chances are we aren't going to change any policies." I think we will just have to pray otherwise =).

We are also trying to work around our insurance issues with Max's outpatient therapy. We maxed out all of our outpatient therapy benefits by January 15th of this year =). We have been working hard the last few weeks to get into a government subsidized program called Birth to Three, it's through our local school district. We have been approved and evaluated in all of the disciplines. This week we will start Max's Physical Therapy in this home based therapy program. Next week we will start receiving Speech Therapy and Occupational Therapy. They will provide one day of therapy each week for all three disciplines to supplement his other therapy. We will still be followed weekly by the Speech and Physical Therapists at Children's as they are specifically trained in pediatric oncology therapy and will work with our team of doctors. It feels good to start getting into a routine it has been tough juggling all of this and trying to figure out what will work best for Max.

Chemo - Round 3

2011-02-01T11:29:00.000-08:00

Grandma and Max both had infusions the same day,
here we are comparing hospital wrist bands.

Hopefully yesterday marks Max's half way point in his 6 rounds of chemo. He did an amazing job, it was so nice to have friends and family visit yesterday to help entertain Max. I tried to schedule a bunch of appointments during his infusion to try to cut down on the amount of time we have to be at the hospital the rest of the week. We got a nice private room with a bed and had dr's, dieticians, child life specialists, therapists, and nurses, visiting all day. We were able to wear him out and got him to take a nice nap in the late afternoon, which helped immensely and made Max and Mom feel better also =). They were able to run all the drugs at the same time yesterday which allowed us to get home at a decent hour.

What a week....

2011-01-27T10:31:00.000-08:00

So we are excited to say Max is doing really well with all his treatments and it seems medically things have settled down and got into more of a routine, now if we could only say that for the rest of life, but I guess chaos is a given when you are parenting twin 1 year olds and a three year old. =)

Last week Max and Molly came down with the stomach flu which was loads of fun, then Josh and I were excited to celebrate our 7 year wedding anniversary this last weekend when we instead got to fight the stomach flu side by side. How romantic right?

Before

We had a few other exciting scares this week leading up to last night when Max had a nasty spill and split his lip in just the right place. It was gaping open and the side of his lip was hanging off his face, after I got the blood cleaned up I noticed that his teeth pierced his lip and it went through and through. Josh had an evening work event and I wasn't able to reach him so I called in the calvary to help with the girls and rushed Max down to the ER at Children's. Luckily with him being an oncology patient we get "special" treatment and they had a room waiting for us when we got there and a staff of ER doctors and nurses ready to get started. It is really a good thing I have a diagnosis for Max's clumsiness because I still cringe as new doctors do their examinations and bruise counts and of course last night was no exception - poor boy was riddled with bruises all over his body and I was sure they were going to call the police on me. We opted to try to treat him with some medication to relax him rather than the full anesthesia since they would have had to check us in to the hospital overnight. He like always was the model patient, you wouldn't have even known he was in pain. He flirted with all the nurses and tried to flash his charming smile at everyone who walked by his room, of course his smile was slightly deformed because of the hole in his lip, but that didn't stop him from trying. They were able to get him fixed up with 4 intricate clear dissolvable stitches on the outside of his lip (the inside should heal on its own), he was wide awake and watched the whole thing, he held still and did what he was asked except he kept trying to give the dr kisses while she was sewing so we had to take a few kiss breaks.

After

He came away with stickers, bubbles, new stuffed animal friends and a whole ER full of staff ready to take Max home with them. A blessing was the timing of this, his platelet counts are at the highest they will be in his treatment cycle so no need for transfusions or special treatment for that and he has been taking a prophlayctic or preventive antibiotic so we didn't have to have him admitted for IV antibiotics. No new prescriptions needed just his normal oxycodone and lots of ice cream (to help with the swelling of course). We didn't have to spend the night and were able to get home at a somewhat decent hour. We are hoping that this spill doesn't change his charming smile, but so far you can hardly even notice the stitches when you look at him.

Tears of Joy…

2011-01-15T15:23:00.000-08:00

Our family has been so touched lately by the support and gifts that we have received. From the beginning we had so much to worry about when Max was given his diagnosis and we knew that we didn’t have time or energy to worry about things that we couldn’t control ourselves and had to cling tightly to God’s promise that he would provide for us.

We are here to say that we have had so many opportunities to share tears of joy lately. We have been so well taken care of by friends and family who have cleaned our house, provided amazing child care, showered us with encouragement, calls, cards, emails, shared their love and attention with our kids when we weren’t able to, surprised us with groceries, date nights, tanks full of gas, care packages, toys for our kids, and of course all the prayers.

We have been blown away by the support of all those who have come in contact with us and we are soo grateful for each and everyone of you!

Health Care Providers Council of Pierce County .

2011-01-14T14:55:00.000-08:00

Josh here for once, Kari usually updates the blog for us, but I personally wanted to give a BIG thank you to the Health Care Providers Council of Pierce County. We were completely shocked, overwhelmed and amazingly blessed by the gracious gift that this group was able give us yesterday at the monthly meeting. Thank you so much for your contribution and willingness to help our family. This was a wonderful thing you all did for us and we appreciate it so much! - Josh

Eating...

2011-01-13T22:16:00.000-08:00

Max with a feeding tube in the NICU after birth

Max is such a trooper but it is a bummer to see Max not enjoying his food like he used to. He always had such a great appetite and would always clear his plate (and both sisters' plates if we would let him).

He lost 5 pounds between the surgery and chemo which is quite a bit for a little guy. Molly has now passed him up in size. We were told that if he loses another pound he gets a feeding tube placed, luckily he was able to maintain his weight another week, we were fully expecting the loss this week given his lack of appetite. This might look disappointing from the outside and will be a constant reminder of his sickness, but it may make life a little easier for everyone for the next little bit. We will be able to give him all his food, meds, and fluids through the tube and hopefully resolve some of the battles we have been facing.

So for now we will try to figure out how to cater to Max's new chemo palate to get more calories in him. The foods he used to like no longer taste good to him. This week he has really enjoyed eating salsa and hot sauce! Since he isn't able to communicate with us meal times are pretty difficult. The doctors also think he is battling reflux along with the nausea and so we have been trying to play with different meds and dosages to try to treat that symptom. We got some helpful tips from doctors last week on how to increase his caloric intake by adding fat (whip cream, sour cream, butter, etc.) to all his foods. Sounds like an awesome diet huh?!

Max with a tube in after surgery

Chemo - Round 2

2011-01-03T21:40:00.000-08:00

Max playing some Xbox 360 while
waiting to get hooked up

We made it through round 2! Max did a great job today, we were able to try to shave off a day of treatment by combining some of the infusions instead of running them back to back. It made for one long day, but at least its over and he doesn't have to endure a second day. They continued to monitor all his vital signs every 15 minutes all day. He had several episodes where he developed high blood pressure and a fever but we were able to make it through without having to be hospitalized but we will continue to keep a close eye on him at home. We were able to get a crib this time so Max could take a brief nap in between interruptions.

We also had another evaluation with Dr. Park, the neuroblastoma specialist and head oncologist today. She was so pleased with his progress. When we were first seen last month he was scored at a 7 on a scale of 1-10 for the severity of his OMA symptoms, in his reevaluation today he was scored at a 4. This is great news! We are going to try to back off on some of his steroids to see if the progress continues and some of his side effects subside. We are also going to try to limit the amount of dr appts, and lab visits the next couple weeks so we can try to get him back on a more normal sleeping schedule. Although they still want him seen by OT/PT and Speech Therapy as much as possible to continue the progress while we play with the dosages on his steroids. We are still battling the insurance company on several different issues including his chemo treatment and the coverage of his OT/PT and Speech Therapy, hopefully now that the holidays are behind us we can make more progress.

Daddy rewarded Max with some cheddar "chemo" corn

Beads of Courage

2010-12-29T15:14:00.000-08:00

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

2010-12-17T18:05:00.001-08:00

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

2010-12-17T17:58:00.000-08:00

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

2010-12-14T22:20:00.000-08:00

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.