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.

 

 

Blue Angels Meet and Greet

 

Make-A-Wish had a special event during Seafair for the Blue Angels and they invited a select few families to join them in the VIP section on Boeing Field which is usually just reserved for special guests and family of the pilots. 

 

We got to watch the pilots get the planes ready and take off for the show and then when they landed we were escorted to their planes and they got out and walked right over to us on the runway.  The pilots came over and greeted us, took pictures with us, answered all our questions and signed autographs for the kids.  What a cool day!

 

This truly was a once in a lifetime experience. Max had a blast and I can only imagine how cool this would have been had he been a little older to know what a unique opportunity this was, he will some day and in the meantime it was super fun for Mom and Dad!

A big thanks to our very favorite Make-A-Wish volunteers for such a fun day and for the cd of pictures to help us all remember this awesome day!

Spokane

 

Josh had a lot of work to do in Spokane this summer and so we decided this week to take the whole family, so while Dad worked hard we got to do lots of fun stuff.  We got to use our world passport from Give Kids the World to visit Silverwood one day.  I also enrolled Madison in art camp for the week at the local children's museum and Mom and the twins got to have lots of fun getting all our back to school shopping done, story times at the library, playing at the park, and lots of bike riding the fabulous trails all along the Spokane River.  Madison and I would ride our bikes to class every day with the twins in tow and then we of course had to enjoy the amazing sun and hang out by the great pool that had a really cool waterslide and kids pool where Mom could sit back and (kinda) relax while they enjoyed the water.

Beads of Courage Fun Run

Max got to participate in a fun day supporting the Beads of Courage Program at Seattle Children's Hospital.

He greeted the race participants and got to show off his amazing bead collection. The founder and executive director of Beads of Courage was there to kick off the program and highlighted Max and all the beads he has earned in a brief presentation prior to the race starting.

We all participated in the 1 mile family fun run and the twins joined me in the stroller as we completed the 5k. It was such a joy to watch Max run with such determination and pride, with the crowds cheering him on.  Little did they know what a miracle it is to see him running so well!

 We all earned our own necklaces and received a shuttle bead that was a symbol of the beads of courage the astronauts took up to space in the last shuttle mission.

 

A big thanks to the nurses and staff of Seattle Children's Hospital that are so dilligent in taking care of the whole child and the family of those dealing with serious illnesses. Max was excited to share his story of courage and hope in a tangible way by sharing his beads with everyone.  Also a big thanks to the Beads of Courage staff and the Baruch family for travelling to Seattle and all their hardwork and enthusiasm.

Beads of Courage kids and siblings

Jean Baruch, Executive Director and Founder of Beads of Courage

2012 Seattle's Top Docs

Seattle Children's had 57 Doctors make it on Seattle Magazine's Top Docs for 2012 - Max had 9 of his Docs make the list this year, very excited for them all! 

Did any of your Docs make the list?

Seattle's Top Docs of 2012

Cancer Free!

Max's year-and-a-half cancer check up came back clear!

Max like always was a champ when it came to getting his scans.  No more anesthesia for Max, he laid so still and was able to drink his contrast before and got his contrast injection during the scan without any complaint.

Max was super excited to checkout all the new Toy Story decals that decorate the machines.

Our Oncologist was very pleased to see today's scans, this is a big milestone, given that neuroblastoma is the most aggressive form of childhood cancer. For Max to continue to be cancer free this long really increases his long term survival rate.  We now get to start spreading our scans out to every 6 months instead of every 3 months, so we can start to minimize his exposure. If the cancer will start to grow at this point it would most likely be localized in his abdomen so it will be much easier to look for as opposed to testing his whole body.

Here is a brief interview of our head Oncologist:

While his cancer is in remission we are still working hard to get his auto-immune disease into remission. We are still fine tuning his medications, we had to increase his meds quite a bit before our trip, which gave us an increase in other things like blood pressure, blood sugar, headaches, and more weight loss.  We are hopeful that his body is managing the meds and we would appreciate prayer as we continue to taper meds to a more manageable level as to limit the long term side effects.   As frustrating as it can be some days, we continually thank God for blessing Max with this rare auto-immune disorder, had it not been for an extra awesome immune system trying to combat the cancer we wouldn't have found the silently growing tumor, had we not found it when we did, Max probably wouldn't have made it this long.  So many blessings to be thankful for!

Madison's Top Five Memories

1. Having lunch in Cinderella's castle and meeting ALL the princesses.

2. Holding an alligator after a swamp boat tour in an airboat.

3. Snorkeling in a shark tank, feeding sharks and having dinner inside a shark tank.

 

4. Being a part of the lion king live action show at Animal Kingdom and the star of every other parade and show.

5. Water parks, water slides, pools, water, etc...