December IVIG Infusion

Thank you Janine! Your gift made this infusion more fun!  

Merry Christmas

Dental Fun!

Happy Halloween 2014

Happy Halloween from Rapunzel, Spiderman, and the Tooth Fairy

Walk for Wishes - Max and The Super Short Necked Giraffes

'

 A huge thank you to all you who donated so generously for this year's Walk for Wishes, benefiting the Make-A-Wish Foundation and for those of you who actually joined us in the wet walk.  We were blown away by the support and more than quadrupled our fundraising goal.  While the weather didn't cooperate for us it didn't seem to dampen the excitement for the reason we were there.   When we had to choose a super hero team, without any hesitation Max wanted to be the Super Short Necked Giraffes, so we embraced it and had lots of fun!  We thought we were up against some tough competition with Purple Underwater Flying Zombie Cows, however Max and his super snaps led us to victory for the award for Most Team Spirit! 

Our super hero staffer - Janine! 

All the Honored Wish Heroes!

The thunder, lightening and monsoon couldn't hold the mighty giraffes back!

Snacking along the walk...

Winner for Most Team Spirit! Max and the Super Short Necked Giraffes

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.