It's Been Awhile

It has been a long time since our last post!  I guess that's because for the most part things are going great for our Tornado Tillie!

This picture is at her 7th birthday party!  Tillie wanted a clam bake for a party, so Emily pulled together a clam bake of sorts.. with alternatives for those of us non seafood eaters.  It was fun!  Tillie found a caterpillar that she held on to the whole afternoon!  In fact, just recently she got a note sent home from school because she got into an argument with the playground teacher because she wanted to bring a caterpillar inside she found out on the playground....Oh Tillie!!  You crack me up!  :)

 More pictures from her birthday party!

Halloween 2013 at the clinic with Katie and Dr. Irwin!

 If you look back to a post from March 2013 you will read about the Scott Stairclimb event for the Leukemia/Lymphoma society and our friend Abbey who participated.  She did the climb again this year and here she is with Tillie and Ravis at Wal Mart raising money!  Thank you Abbey for your participation! 

A side note here...you can see Tillie's hair is now quite curly!  Her hair has grown back very curly..like a nice hot roller set!!

 Some Christmas time pictures...making cookies at Grandma's...

 Auntie Kathryn and Tillie!

Tillie has been struggling with skin issues and in January we had her tested for food allergies.  We knew she was allergic to walnuts and sometime last fall Tillie seemed to have a reaction to pecans.. she had had them in the past and seemed fine.  She went to an allergist and it was determined pecans were now an allergen.  The testing in January was through a naturopathic doctor and was more thorough.  The result was she has a lot of food allergies.. the list is broken into 3 categories of low, moderate and avoid.  For 3 months she was to avoid the moderate and above foods and her skin cleared up quite well!  There are only 3 foods in the avoid...walnuts, bamboo shoots and of all things, vanilla!  Do you know how many foods have vanilla???  We have found a substitute though for foods that get cooked...WHISKEY!  Yes, whiskey!  We have used it in pancakes and chocolate chip cookies!  Tillie has been very good at saying "I can't have that" and does it with grace.  I am very impressed with her!  That's one thing about a child who has gone through a life threatening illness.  There is, in some situations, a maturity that you don't normally see in a child. 

Emily has tested some of the moderate foods and Tillie has done ok with some of them.  Her main symptoms are either rashes or she sneezes and coughs and needs some Benedryl.  Fortunately there have been no breathing problems, but they are prepared if need be.



 This is Easter 2014.  Tillie and Ravis and their cousin Blake who is now 21 months!  Time is flying fast for our grandchildren!

So as you can see, Tillie is doing well.  She has bi-monthly blood draws and each year the time between appointments will be spread out.  I am posting a link to a blog Emily has started.  She is a strong Mamma who has impressed us all with her strength and grace throughout this whole journey!  Once again we are so grateful to our friends and prayer warriors! 

As you read Emily's post, please pray for her and Anthony! 

http://emthought.blogspot.com/2014_04_01_archive.html

Blessings to all of you!

 

Camp Prime Time

On August 16-18, Emily, Tillie, Ravis and I headed east on Highway 12 toward White Pass to Camp Prime Time on Clear Lake.  Camp Prime Time is a camp dedicated to children with serious illnesses and disabilities and for the families.  I got to tag along on this adventure!

This is inside our cabin!  It was very comfortable, and the only downside was the lodge and bathrooms were uphill!  We didn't spend much time in the cabin except for sleeping..we were kept busy..

 This is the  lodge at Camp Prime Time.  The camp is run all summer long by volunteers.  Each weekend a session for different types of childhood illnesses is held.  The volunteers cook, serve, play...you name it they do it! 

There was a playground right by our cabin! I was impressed at Ravis's ability on the monkey bars!  He's all boy!  I think Tillie has been teaching him!  She has helped him in learning his numbers and letters too!  She's a great big sister.

There is a treehouse at the camp that is handicapped accessible!  It is quite nice!

 Emily and the kids in the treehouse!

 Inside the lodge waiting for a meal!  Ravis is being a silly boy! 

 Before each meal the bell is rung.  Tillie and her "boyfriend," Caleb got to ring it a few times.  Also pictured is Skylar!

 "Summer lovin' happened so fast, summer lovin' had me a blast!!"  Tillie and Caleb!  They were so cute...I have heard there was a marriage proposal too!  Of course Tillie was flirting with a couple other boys, but Caleb was her favorite.  They even went on a "date!"

The lodge has a new and large playroom!  Lots of toys, ping pong, air hockey and all kinds of fun!  Before and after meals was when we spent time in the playroom. 

 Camp Prime Time has its own boat too!  We got to go for a ride and they even let the kids "drive" the boat.  This is Skylar, Ravis and me!!

 Here's Tillie at the helm! 

 Ravis was absolutely thrilled to drive!  He is a truck, car, train, boat kind of boy!  Anything that goes he loves!!

 On Sunday before we left, the kids got to go horseback riding.  When we were in Florida last year for Tillie's Make A Wish trip, Tillie got to ride a horse but Ravis was too young, so this year he got to ride!  Yeah, the helmet is a little big!  :)

 

 On our way home we turned a corner and there was Mt. Rainier in all her glory!  We had to stop and get some pictures!  It was spectacular!!

This weekend was another wonderful break for families dealing with childhood illness.  It's also a support system for the families.  This year there were 4 families who have lost children to this horrible disease.  Three of them just this year!  It is a stark reminder that cancer and all childhood illnesses are horrible.  We are blessed and so thankful that Tillie has done so well.  Other kids have not been so fortunate.  Emily and I were talking about this and she said she felt guilty that Tillie's treatment went so well and that she came through it!  I talked with a couple other parents and there is a term called "survivor guilt."  It's something that is very real.  Emily had some good talks with other moms and got some good insight and made some new friends!

 

We can't say enough about the volunteers at Camp Prime Time who make this all possible!  Here is a link to their website so you can read about it!  There are so many organizations that are there just to support families going through childhood illnesses.  There to support, encourage and to offer a time away from it all!  These organizations are a major blessing to the families. 

Summer 2013

Just a quick update!  It's been 6 months since Tillie's last chemo treatment and she is doing great!  At the end of May the Maier Family moved up to Everett, WA.  It was not a move they had planned on, but the property owner of their duplex decided to move into their unit.  So they ended up going further north, which seems to be a good move, other than they're further away from all the grandparents!  :( 

 

We have often sung the praises of the wonderful Dr. Irwin...here's why!  What a wonderful human being!  He loves what he does and he relates so well with the kids!  This time it's Dr. Tillie doing the exam!

In June Tillie did the survivor lap for Relay For Life in Shelton..

The photographer for the local paper got this picture of Tillie and interviewed Emily as we were walking.  I commented to a friend how mature Tillie looks and her comment was "she's standing still!"  Ha..so true!  I do think a child who goes through a life threatening illness grows up a little faster than they might have..They have gone through so much!  A boy who was treating for a brain cancer during the same time Tillie was treating died in June.  It is such a stark reminder that cancer is a horrible disease that doesn't always have the successful outcome that we are experiencing.  As I follow more pediatric cancer groups on Facebook we find that pediatric cancer research is extremely underfunded!  I'm not sure what the answer is, but I do believe more research needs to be in prevention!  Not all cancers fall into this category, but so many of them can be held at bay by changing nutritional habits.  If I understand this correctly, Tillie's cancer came about due to a gene mutation in the womb. 

On July 8, 2013, Tillie had her port surgically removed from her chest.  It was outpatient surgery at Mary Bridge.  It was a long day, but the port is gone!  And it was a purple port!  Perfect for a princess who likes pink and purple!  The surgeon who removed the port was the same surgeon who did her surgeries for her back infection (see posts from 2010) and who also put in her port.  He remembered Tillie and was so glad to see her doing so well!

This picture was taken as they were heading off to surgery.

In the waiting room..Ravis loves trucks, trains...anything with wheels and he loves to lay on the ground and play with them.  There are many pictures of Ravis in this position!  This little guy turns 4 on August 3rd!  3/4's of his life has been a sibling of a cancer patient!  He's not real verbal yet, but  this has been a journey of his own!

In her room recovering.  This was taken just after Tillie tried to sit up and get rolling.  We had to convince her she needed to rest!  She had trouble a little later keeping a popsicle down so some anti-nausea medicine was added to her IV...

Always our poser!  She's ready to go home!  She had some crackers and kept them down so all systems were go...so we thought!  Poor Emily..it was bumper to bumper traffic all the way home to Everett and Tillie got sick a couple of times and Ravis had some problems of his own!  She called me when she got home and was in tears!  But, after a quiet day Tuesday, they were ready to resume normal life!

July 12th...Tillie's monthly appointment where the blood was drawn via a finger poke.  We were all a little nervous as to how she would respond.  Because the drive from Everett varies due to traffic, Emily and the kids got there early.  So when I arrived at the appointment time, Tillie was all finished and did pretty well.  She didn't want Mom with her, she chose Robyn, the Child Life Specialist!  A visit from the nurse practitioner from the surgeon's office to check Tillie's incision and we were on our way!  Fastest appointment ever!

If you take a close look at Tillie's hair you might notice that she trimmed her own bangs!  Emily asked her why and she said "they were in my way!"  Haha...I think every kid gives themselves a haircut at least once in their life!

We are so thankful that Tillie is doing well!  Her next adventure will be first grade in a new school in Everett..Tillie will be 7 on September 2nd, and has requested a clam bake birthday party!  That should be fun!

 

Thank you all for your love, support and prayers!

Scott Firefighter Stairclimb Event

 

On March 10th, my friend, co-worker and volunteer firefighter, Abbey, took part in the Scott Firefighter Stairclimb Event to raise money for the Leukemia & Lymphoma Society.  She had talked to me last summer about it and having Tillie as their honoree.  Abbey and 2 others from Mason County Fire District 11 were taking part. 

The event takes place in Seattle at the Columbia Tower, the tallest building in Seattle.  They were going to climb 1,311 steps in full firefighter gear and SCBA (Breathing apparatus).  About 70 pounds of gear!  These 3 trained for months at our local high school's stadium.  We were able to get passes for all of the Maier Family and Reg and me. 

 

Oh my!  What a wonderful event!

 

When we first got there we parked in the building...6 floors down in the ground!  That was really weird going down, down, down....

Here is Abbey before she did her "run."  There were 1500 firefighters there and they stagger the groups going up..

Tillie with Abbey, Kim and Summer.  Kim went first in their group.  Halfway up there is the opportunity to change out the air tank.  Each of them had pictures of Tillie on their helmets too!

As each Battalion was called to line up and then head to the start point, this Pipe band sent them off..it was cool!

 

Here's Reg and Tillie...Did I say this was a WONDERFUL event!  There was quite a bit of down time and both Tillie and Ravis did really well.  We brought plenty of snacks and wandered around looking at all the firefighters!

When it was close to Abbey's turn to go, we connected with an escort to take us to the top.  But first we went to the start point for the firefighters.  They have a chip on a bracelet that starts timing them when they swipe their hand here.  So, for about half an hour, Tillie got to yell "SWIPE" to all the participants that passed through there.  There were many who also wanted to high five or fist bump with Tillie!  She had a blast!!!  There were some photographers taking a bunch of pictures of her...she had her own paparazzi!  :)

Here's Abbey and Ravis, shortly before her run...Ravis had fun running around and being a boy!!  He spent a lot of time on Anthony's shoulders..easier to keep him corraled when it was needed!

Anthony and Ravis...it was actually a good place for a little guy to watch everything!

Here's Abbey swiping and ready to go!  Do you see the picture of Tillie on her helmet?  We put  before, during and after treatment pictures on the helmets.

After Abbey headed up, we headed for the elevators...In my opinion, a much better way to go to the top!  I think Abbey agrees now!  Hehehehe....

 

At the finish line, the volunteers help get the tanks, helmets and masks off the firefighters and the medic tells them to take off their jackets.  They are trying to get them to cool off quickly.  When they get to the finish line they are spent!  They are each escorted to an area to sit and hydrate.  So, the medic recruited Tillie to get them to take their jackets off...So as each one came through the finish line and had their tanks, helmets and masks taken off, Tillie yells, "TAKE OFF YOUR JACKET."  If they didn't respond, she yelled again...It was HILARIOUS!!!!!  A lot of them at the finish line were the ones who high fived Tillie at the beginning and they wanted another high five!!...Did I mention this was an AWESOME event???

Here's a video of Tillie in charge!  It was too funny!  She did a great job!

Abbey did it!!!  Her time was about 30 minutes!  And she was thrilled to have Tillie at the top to greet her and tell her "TAKE OFF YOUR JACKET!!"

Here's Abbey resting and hydrating..a very important part of the process.

This one's for me (Carolyn)..Safeco Field from 69 stories up...it's quite a spectacular view! 

Back down..well, on the 3rd floor....Did I mention how awesome this day was?? 

We had a wonderful time and as we were upstairs greeting the firefighters as they finished, saying good job and thank you for what you're doing I was near tears at times that they would train and train and train for this..for kids and adults who have battled leukemia and lymphoma.  Over one million dollars was raised yesterday!  I know that Emily and Anthony benefited from the Leukemia & Lymphoma Society with financial help. 

 

This journey Tillie has been on has introduced us to some mighty fine people.  Folks at Mary Bridge, Make A Wish and yesterday all the volunteers and firefighters and more...all to honor and remember those who have fought these blood cancers.

 



Tillie's Journey (Aunt Eliza's narrative)

Almost two-and-a-half years ago my niece Tillie was diagnosed with leukemia. As she reaches the end of her treatment plan & the beginning of a life free from cancer, I want to reflect on the journey. My memories are just a glimpse into the reality that Tillie, my little sister Emily, & often my stepmother Carolyn, lived every day. I barely scratch the surface of Tillie's story but my feelings & experiences are all I have to share.

In retrospect, the journey for me begins with our family gathering at the beach in July of 2010. Tillie & I had so much fun soaking up the sun & waves together. We splashed in Puget Sound & played in the warm sand. Tillie was her usual rambunctious, bossy self. No one would have ever thought she would be diagnosed with cancer six short weeks later.

I would look back on this day again & again, searching for signs of her illness in my memories: she looked pale, she needed to be cuddled for warmth after swimming, she was all tuckered out on Grandpa's lap. None of these things were cause for concern, but I wanted to find something that hinted at the leukemia cells raging in her little body. I mentioned my astonishment to one of Tillie's doctors that just six weeks before she was active & healthy, playing on the beach. He explained that the bloom of cancerous cells can occur so suddenly & multiple so rapidly that it's possible she did not yet have leukemia on that sunny July day.

I was standing on my back deck when my little sister called with the news that Tillie was being transferred by ambulance to Mary Bridge Children's Hospital in Tacoma. Emily explained through scared sobs that they thought it might be cancer. My heart dropped in my chest. At the time, I could only imagine what my sister must have been feeling -- having a child of my own now, I can understand her absolute terror.

My memories of those first 24 hours are chaotic & visceral, but certain pieces will always stand out. I remember that Tillie was so pale her ears were almost translucent. I remember hearing that when Tillie was admitted she had no healthy white blood cells remaining in her body. The doctor spoke of what a resilient fighter Tillie was -- how she was talking & complaining, while an adult with the same blood counts would likely be dead. It was surreal to scour the internet for information about childhood leukemia & to overnight go from knowing next to nothing about cancer to praying specifically that Tillie's blood work come back as ALL & not AML (a much more rare form of leukemia with a lower survival rate).

Tillie was diagnosed with Acute Lymphoblastic Leukemia (ALL) on September 4th, 2010, two days after her fourth birthday. She was admitted, diagnosed & began treatment within 24 hours.

 After a day in the ICU, Tillie was moved to the pediatric oncology ward where she remained for 5 weeks.
A port was inserted into her chest so that chemo drugs & antibiotics could be given intravenously. Due to both the chemo & multiple infections, exhaustion & irritability came & went, as did her appetite (sometimes the only thing she wanted to eat was string cheese). Three weeks into her treatment we had a scare when the site of Tillie's bone marrow draw became badly infected & surgery was necessary to drain it. At the height of the infection Tillie had so much pain that a morphine drip was administered -- we all hated to see her in pain, but it was also difficult to see her doped up with morphine.

While Tillie was often cranky, she was also cheery & even energetic at times. Numerous games, movies, books, toys & art projects were indispensable in providing entertainment & keeping her spirits up. Many visitors dropped by during this time, helping to break up the long days. I visited often during this time. When her neutrophil count was especially low, she was confined to her room to lower the risk of infections.  On one memorable day of confinement, we built a fort using hospital sheets & for a little while her grumpiness subsided while we played & snuggled in our cave.

On October 13th Tillie was able to go home! I was working from California that day & had to miss the excitement of her first time outside in over 5 weeks. Her outpatient treatment included medications administered at home along with weekly visits to pediatric oncology at Mary Bridge. While she was now outpatient, there would be multiple hospital stays throughout the next couple years, both for treatments & for scary times when her neutrophil count dipped so low that she was defenseless against infections. It was difficult to see the effects of chemo on our sweet Tillie girl. She lost her hair & the chemo made her little face & body swell.

Throughout all of this Emily provided the constant support & cheerleading that Tillie desperately needed, even while scared & exhausted herself. She learned how to administer numerous medications from home & got past her gag reflex to change the dressing for the infection in Tillie's back (it definitely required a strong stomach). All this while also attempting to maintain some normalcy at home & care for Tillie's younger brother. Ravis was a trooper, being past around from daycare to family member, so that Tillie could have her mother's undivided attention.   

 Tillie's cancer has spanned more than a third of her life -- it began when she was just barely out of toddlerhood & has continued into her first year of school. When Tillie was first diagnosed, the hospital told us that her chances for survival & a full recovery was 96% with no sides effects, provided she complete the full treatment plan. The phrase "full recovery with no side effects" went from being abstractly medical to intimately personal. It meant that not only would my niece grow up, but also that cancer would not define her life or future.

Tillie had her last chemo treatment in January & the hospital staff threw her a little celebration party. I wasn't able to go but had to share the photos below, especially the one with the always awesome Dr. Irwin. Tillie will continue to have monthly blood draws at the hospital & her port will not be removed until summer. Eventually she will have blood drawn to check her numbers just once a year.

Last weekend we had a family party to celebrate.

Tillie raced around the yard, pink boots pounding on the grass, balloons flapping in the wind, giggling wildly, looking very much like a tornado of health & happiness.

Along this journey, hundreds of people have rallied to support Tillie & her family. Through prayer, encouragement, financial support & understanding, a community of love & strength has buoyed Tillie to a full recovery. It makes me smile to think that so many people have been able to be a part of our special little girl's journey -- to see her exuberance for life, to feel hope for her recovery, & now to rejoice that she is cancer free with a full & healthy life ahead of her. 

Exuberance, hope, joy -- these are the gifts that Tillie brings to the world & will continue to bring, thank God.