Tapering, Relapses and Chemo, oh my!

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

 



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

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.