Boston - Haavahd

Sorry for my delay in updating everyone.  We have returned from Boston with hopefully some more information and plans to move forward.  It is a huge blessing that our Seattle and Boston teams are working together very well.

  

Let me catch you up to where we are at now.  We have spent the last year trying to wean Max off of steroids used to suppress his immune system and keep his autoimmune disease under control.  We added a Dexamethasone pulse treatment three days a month to aid us in tapering off of the daily prednisone. While we have had some strides in reaching our goal we have also had many setbacks including many small viral infections, hospitalizations and flare ups that continue to hold us back and now after a year of double steroids we are still at the same place we were last  year, except he is now 4 ½ with the bone structure of an 18 month old and is now starting to develop some issues from long term steroid use, one of which is called hypogammaglobulinemia which means he has low IGG levels and will require IVIG infusions (similar to a blood transfusion),  for many kids this is a lifetime complication.

All of our specialists are in agreement that we need to begin a new course of treatment.  However, with the new development of  hypogammaglobulinemia and  very low Lymphocytes and B-Cells we are left with a difficult decision.

The most aggressive option that has worked in the past and that everyone is in agreement on is another round of Rituxan a chemotherapy agent that generally treats lymphomas and is responsible for completely obliterating all your B-cells and hopefully any circulating attacking antibodies.  The problem is that Max’s B-cells have yet to repopulate from his last round of chemotherapy, which mixed with a pretty significant reaction during his last round of chemo makes this choice a very risky and potentially fatal option and not one anyone is taking lightly.

A second option that we are looking into is an experimental change to a drug called cell cept which is generally used to treat patients following bone marrow or organ transplants to suppress the immune system enough so that the body doesn’t reject the newly introduced organ.   With the hope that we will suppress a different part of his immune system that coupled with continued steroids will have a broader suppression of his immune system will hopefully shut down any remaining attacking antibodies.

Both options paired with his current steroid regimen are very risky. Both options present a very realistic possibility of secondary malignancies, and reactivation of latent viral infections that can be fatal,  they both also increase the susceptibility to infection, including opportunistic infections, fatal infections, and sepsis.  We do know that Max had minimal visible side effects with his last round of chemotherapy, while it was handled with 4 weekly infusions that lasted 6-9 months, the cell cept would be a twice daily oral option that could possibly have more gastrointestinal problems that would make him feel like he had the flu everyday for the foreseeable future.

After much prayer and research and discussions with doctors, pharmacists and many specialists, we have chosen to move forward with cell cept, we have all agreed that we will give it a try for 2-3 months while Max continues on his prednisone and dexamethasone and then all the prophylactic meds that will need to support this new treatment, this 2-3 month trial will buy us some time to go through some more cancer scans and be seen by immunologists and allergists here to work out his allergy to the last round of chemo that we did with the intent that in 2-3 months if we haven't made much progress we will switch back to the chemo.  We have lots of eyes keeping an eye on Max now, he will likely develop neutropenia (lowered ANC blood counts) similar to how chemotherapy works and we will have a bone marrow transplant team following him while on this cocktail of meds.

 

We all appreciate your continued prayers and the help that we received while we were in Boston and our girls were at home trying to start a new school year.  While we feel a little anxious with this new experimental plan, we are confident that God is continuing to watch over us and guide us in these difficult decisions.

While at Boston Children’s Hospital we were able to squeeze in quite a bit and even was able to enroll Max in a research study that is being done by Harvard, Zurich, and Oxford and should hopefully be compiled and presented in February at the research summit in London.  We didn’t have much extra time while in Boston, but did get to spend a little time in Haavahd Yahd exploring the campus, Max loved reading books in the world’s only Curious George Library in Harvard Square.

Calling all Heroes!

Since 1986, Make-A-Wish Washington has granted spectacular wishes to more than 5,200 children battling life-threatening medical conditions. With more than 300 children awaiting their wishes, the race is on to raise funds and make these dreams become reality!

Our family was a recipient of an amazing wish that helped to create so much hope!  Please support us in our efforts to make wishes come true for other children battling life-threatening medical conditions.

Join us at Make-A-Wish Washington’s Puget Sound Walk For Wishes on Sunday, September 15 at Marymoor Park! This family-friendly 5K walk and fun run will raise funds to help support about 300 local children awaiting their wishes. Please join us in helping make dreams come true for other children like Max, whose wish was granted last year!

If you can't join our team in the walk, please consider donating on behalf of Max!

Visit our Family Walk Page
and
Help Make Wishes Come True Today!

Growing Up!

New Haircuts!

Less Teeth!

Fever - Hospital Stay

After a hot evening playing a t-ball game Max ended up at home with a fever. It came out of nowhere with no other symptoms attached.  I delayed a little too long in getting him to the hospital in hopes that he was just a little dehydrated from playing so hard in the sun.   However by the time we had consulted with the on-call oncologist and made it to the hospital around 11pm, Max already had tachycardia and seemed to be going into adrenal crisis.  They were very concerned that his port had a bacterial infection which could lead to sepsis. After a few hours of IV fluids, antibiotics, and close observation they were able to pump him full of enough steroids to get his system to calm down and finally around 4 am got us admitted to the Seattle Cancer Care Alliance (SCCA) floor at Children's Hospital for further tests and observations.

Even with the increased steroids Max's OMS flared up while under observation.  Of course while we were inpatient both our oncologist and neurologist were out of town, so we had delayed answers and a hard time coming up with a treatment plan.  We continued with increased steroids and an emergency infusion of IVIG to try to help him feel better.  It seems that the antibiotics we used seemed to clear up the underlying condition within a few days, after many tests we were unable to pinpoint the actual infection.

We were extremely lucky this wasn't worse and a good wake up a call for the importance for us to respond quickly at the first sign of a fever.  We have emergency shots that Max keeps at school, home, car, etc. that can be administered upon the first sign of stress on his body.

Our medical team is still unsure how to proceed at this point, we are headed to Boston in a couple weeks to get some more help from our neuroimmunology specialist. Stay tuned for further updates.

Swimming Lesson Fun!

Preschool Graduation

Congrats Max and Molly!

Marita Kent

Seattle Times Obituary

Marita Faye Kent, 55, of Kent, Washington, died May 9, 2013. She was born in Renton, Washington, on July 4, 1957, to William and Fay Barton. She graduated from Glacier High School in 1975 and was educated at Multnomah Bible College. On May 6, 1978 she married the love of her life, Dan Kent. She worked at Key Bank for 10 years, before she left for the passion of her life to invest in the lives of her 3 beloved children.

She found joy in being a stay at home mom; and enjoyed volunteering in her children's classrooms and with the school board to review and approve curriculum. She served as a Sunday School teacher, church deaconess, and a mentor to young women and moms through MOPS and Mom's Connection. With her gentle spirit and loving heart, Marita faithfully served as the Nursery Coordinator for many years; devotedly loving babies, young children, and their families.

She loved reading, traveling; and was a talented seamstress and gardener. She fought a long and hard fight against Stage 4 Breast Cancer, and defied the odds repeatedly. Marita never let a medical diagnosis or prognosis define who she was, as she knew her identity was in Jesus Christ alone. Her unwavering faith in God was a witness to all; including her Group Health care team. Yet even throughout her own struggle, she reached out to others in many ways; and found it her ministry to share the positive attitude and hope with all who came in contact with her.

She leaves her dearly loved husband of 35 years, Dan Kent; her mother, Fay Barton; her children, Kari Burt (Josh); Kevin Kent (Lia); Kraig Kent (Stephanie); her precious grandchildren: Parker, Madison, Max, and Molly; her siblings, Debbie Slattery (Glyn) and Doug Barton (Lisa); her in-laws, M. W. Sherman, Jerry and Carol Kent, Ronald Kent (Tami), and Randy Kent (Karen) and many other close beloved members of her extended family.

A Memorial Service to celebrate Marita Kent's life will be held at 3 p.m. on Friday, May 17, 2013, at Boulevard Park Presbyterian Church in Seattle, WA. In lieu of flowers, memorials can be sent to Boulevard Park Presbyterian Church or Young Life at www.kent.younglife.org.

Heavy Hearts....

It is amazing the new world God has called us into. I never imagined that I would be so closely yoked with other mom's who are watching their kids go through horrific things. This weekend it hit us really hard when three families have had to endure devastating news.   I ask you to join with us in prayer as we try to find a way to make sense of these struggles.

 

1. The Churchill family whose son Maddox (Max), who has battled the same illness our Max has battled, lost his courageous battle this weekend.  His mom Melissa wrote:

"Maddox passed away this evening at 5:10pm.  Our hearts hurt more then we can ever describe."

Max was almost 2 and was diagnosed at the same age as our Max, he has sisters, Madisyn and MaKaylee and a brother Mason. He shares the same blue eyes as our son and was such a strong fighter, he was blessed with amazing parents who are now left trying to cope with this loss.  He passed away from complications with his OMS.   Please pray for this dear family as they try to make sense of this tragedy.    You can read more about his life here  ~ Maddox Churchill.

 

 

2.  Another family friend of ours whose Leukemia has returned in their 3 year old and they have had to uproot their family in Montana to move into Seattle Children's Hospital.  Their daughter is enduring another serious round of chemo and desperately waiting to find a bone marrow match so she can get a transplant.  If you are between the ages of 18-44 and are healthy, please consider signing up to be a Bone Marrow Donor at www.marrow.org  all it takes is a few swabs on the side of your cheek.  You can follow the Anderson family and their prayer requests at http://conglomerationofjoy.com/ 

 

3.  Prayer for a really good friend of mine whose 3 year old son was diagnosed with Autism a few months ago and just got news that her 1 year old daughter was diagnosed with Cerebral Palsy.

 

I wish we had a magic wand to fix all these problems.  We don't know why God chooses to have awful things happen to little kids, but I hope someday we will know God's master plan. 

2 Year Cancer Scan

We are very excited to share that Max received another good report after his scan.   The report read “No new evidence of Neuroblastoma”.   He did great during todays tests, and he had lots of fun playing Santa and visiting all the dear providers that take such good care of our family.

The Oncologist reviewed all the reports with me today and we had a reflective moment as we looked back on the last 2 years of Max’s life.   He has come a long way in these last two years and has fought hard, we are so thankful for the Lord’s provisions and strength to see us all through. 

 
We are having great success with this new protocol to help his autoimmune disease that he developed from the Cancer.  He is taking high dose pulses of steroids one week a month while we are trying to decrease his daily steroid doses. He is getting pretty sick to his stomach while on the meds, but overall it is making life better.  We are scheduled to drop his evening dose starting on Christmas Eve and we will be back to the place we were at last year when he had his relapse.  You could join us in prayer that as we drop his dose of meds he won’t show any signs of relapse.  The doctors are still not certain if he will need to do one more round of chemo to make sure we have reprogrammed all those attacking antibodies.  If we did do more chemo it would consists of 4-6 rounds once a week in January/February, and we would probably head back to Boston at that point.  If he sails through the holidays without any relapses, we could be in the clear and possibly looking at a surgery to remove his port in February and just maintaining the same treatment plan for the next year or so.  We are very hopeful for the best and appreciative of all the prayers!

Ready to get deaccessed and go home!

Life Saving Award - Kent City Council

It was a special evening at the November Kent City Council Meeting where Dad was able to publicly thank the police officers that saved my Mom’s life the morning she had her heart-attack.  Unfortunately Mom wasn’t well enough to attend the event but the Kent City Council and the Kent Police Department awarded these men with the prestigious life saving award.  The family was able to attend to show our appreciation and personally thank these heroes.  It was a very touching experience to thank these men and their families.  We are so grateful that these officers responded so fast and had an AED in their patrol car so that they could keep Mom alive until the Paramedics could step in.

 

Go Huskies!!

We have had such a fun season already! 

 

 

 

 

 

Too much excitement!

Boo!! - I Scare Cancer...

 

 

I apologize for my delays in blog updates, we have had a busy past couple months.  Max is doing really well and we are ready to start making some changes to his treatments.  We are getting close to the dose of steroids where he relapsed last year and would love a holiday season free of crisis, so we are trying to be proactive and establish a new game plan for the next few months.

 

Seattle Children's has dropped the clinical COG trial Max was originally a part of and we are exploring some other protocols.  It looks like the hospital will be adopting a popular European protocol, using Dexamethazone instead of Prednisone (which is a more potent steroid that has better effects crossing the blood brain barrier) and Rituxan (the chemo drug we used this spring) instead of Cytoxan (the chemo drug we used last year).   After consultation with a Pediatric Oncologist at Lucile Packard Children's at Stanford it seems there has been some luck with patients using a strong pulse dose of Dex for 3 days a month in hopes of transitioning off the dependance on the daily steroids. While there is no literature to back this up, it seems like a logical plan to try since we haven't had luck in the past with other protocols.  Max had a few sniffles after school started and rather than bumping up his Pred we opted to begin this new protocol.  It means a couple months of doubling up on steroids, which hopefully won't bring with it many new side effects or tough adjustments.   He started this past week and so far it hasn't been too bad.

 

We still have plans in the works to visit Boston soon, the travel clinic has taken a bit longer to establish than originally scheduled and we are hesitant to make the trip without all the specialists on board, we would hate to make a trip now and then need another trip in a couple months. The main neuro-immunologist has been great about communicating and discussing treatment options by email and conference calls.  Insurance is still busy trying to take care of all the approvals through the medical director and we are still trying to make sure we have all of our counterparts in place here in Seattle to be able to receive information and treatment plans from these other specialists.

 

Max still continues to be seen by PT, OT and Speech Therapists weekly through Children's Hospital to help us watch for fluctuating symptoms as we change his meds. Its been trickier to get him scheduled for all his various appointments now that he is attending school, the last time I pulled him out of school he just grumped all day and refused to comply with the drs because he was so bummed about missing his class, so we are trying our best to take care of everything after school which makes for some long days for little Max.

 

Max has continued to not show any growth in height or weight this year again and is falling farther off the charts, he now has the medical diagnosis needed to begin daily injections of growth hormones which we have been encouraged to discuss now, with the hope that he would begin them within the next 3 months. We are seeking some more opinions and needing to do more research on this risky addition to his treatment. We really would like to hold off until after our next round of scans to make this decision.

 

Thanks for all your continued prayers, we are so excited that he is doing so well, a little nervous about changing things, but hopeful that God has it all under control. 

 

Tinkerbell Premier

Make-A-Wish invited our family and friends to attend Seattle's Premiere of the new Tinkerbell Movie, where Tinkerbell finds her long lost Sister.  Radio Disney was there with lots of goodies and games and the kids all had fun checking out this new 3D movie. 

 

 

Busses and Best Friends

Waiting for the School Bus

   It hasn't taken long for the kids and Mom and Dad to get settled in at a new school. They love going everyday. Big Smiles, Waves, and Kisses can be seen as the bus drives away. However, all that extra time that Mom was hoping for has already been used up by volunteering in the classrooms, attending field trips, PTA, and other school projects. Dad is also involved as a Camelot WatchDog (Dads of Great Students). All the kids have quickly made new friends and are loving their teachers and learning so much!

 

 

 

Having Fun in Miss Jessie's Class

 

 

 

Madison's New Best Friend, Aislyn

 

Update on Mom

Mom suffered a cardiac arrest on August 28th early in the morning, my super hero dad was right there to provide CPR until proper medical attention arrived.  She arrived at Valley Medical Center unresponsive and they worked hard to save her. She remained on the breathing tube for several days while they cooled her body temperature down to help her body heal. After warming her up she quickly perked up and was in the ICU and hospital one week before she was fighting to come home.  She is at home now resting comfortably. She has home health services with Visiting Nurses, Occupational Therapy, Physical Therapy, and Speech to help with her memory.  It seems that her breast cancer that had spread to her bones, may also be spreading to her brain.   She will begin radiation treatment on her entire brain this week.  Thank you to all who so diligently prayed for her and for our family during this critical time.  Clearly God still has big plans for her.

First Day of School

 First Day of Kindergarten and Preschool

Molly's Surgery

 

We have had a really fun and busy summer and now we have to get back to business and get things taken care of before the school year starts. This time Molly got to go to the hospital to get her tonsils and adenoids out.  After a year of battling breathing issues, inhalers, crazy loud snoring, and infections, the surgeon and ENT took one look at her mouth and said we need to get these out right away.  No xrays and tests needed they could see the problem areas by just looking in her mouth. 

 

So after much coaxing and prepping on what was going to happen Molly reluctantly/cheerfully? made it to the hospial with us.  Molly is a much more sensitive patient, she refuses to watch Max have any procedures or pokes done and will polietly sit outside his room, bury her face and cry, Max will look at her like she is crazy and tell her to stop crying.  So this time we assured her that there wouldn't be any pokes for Molly and she thought it was pretty cool that it was her turn to go to the hospital all be herself with mom and dad.  She did really well  until we hit the bright lights of the sterile bright operating room full of lots of masked medical professionals and then she lost it.  Luckily we got to have one of my favorite pediatric anesthesiologists and she knew just what to do.  We covered her face with her favorite blankie so she couldn't see anything and then she turned on the gas and started pumping it through her blankie,  she knew Molly was a candy lover and pumped candy flavored gas through her blanket until we got her knocked out. 

 

Surgery went great, although she had a tough time waking up from the anesthesia they paged me in to the OR to find a highly comabative little girl with three men trying to hold her down and keep her from hurting herself and others, after big hugs from mom and two rounds of extra sedation we made it to recovery where Josh got to take over.

with her history of breathing problems they had asked that we spend the night for observation which normally isn't needed but they wanted to be on the safe side due to her history.  Although in the end once the tonsils were out, her airways were so much bigger and with the added sedation they felt comfortable sending her home in our care knowing she would be flying pretty high for the next 24 hours and trusting that we knew the warning signs of what to watch for. We promised to sleep with her and keep a very close eye on her and we got to go home, with instructions on how to handle the 3 different pain medications and dosing instructions for every 2-3 hours round the clock.  

 

Upon arriving home,  her first 24 hours went really well, with only a couple episodes of vomitting she even managed a few smiles while opening some of her surgery presents from family.  The doctors prepared us that the recovery takes awhile and generally gets worse before it gets better.  They asked that she be out of all activities for 2 weeks, days 3-5 were definately worse when the incisions began to scab over and were painful and itchy.  She would cough and rip the scabs off causing some bleeding, but she did really well as long as we kept up on all the pain meds, she was a pretty cuddly little patient and forced mom to take a break and enjoy some snuggles.