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.

No More Chemo Celebrations!!

 There has been 2 NO MORE CHEMO celebrations for Tillie!!  The first one was on February 15th at the clinic!

 This was what greeted Tillie at her appointment on the 15th!  They gave her a gift and a Completion of Chemo certificate.  The gift was a very cool picture frame which already has a picture of Tillie and Dr. Irwin in it!

 Tillie and the most wonderful oncologist, Dr. Irwin!  They celebrate with crazy hats...Ravis has found Nemo!!

Tillie is sporting the latest in NO MORE CHEMO hats!  Can you tell we're excited??

 





















A friend did Tillie and Ravis's shirts for the celebration! I just love the front of Tillie's...the tornado with a tiara!!

 Happy Tillie Girl! 




















I think the siblings are the unsung heroes!  Ravis's shirt says
"Super Star Sibling" on the front, and on the back it says "I survived my sister's cancer"!

 Celebration #2!

We had a party for Tillie on February 23rd at her house in Tacoma!

Safeway did an AWESOME job on the cake!  Whatever did we do before technology...I just texted their designer person a picture of the tornado and tiara and she did a great job!

Tillie and her Auntie Kathryn..it was a dry, crisp day..a great day to party and run around outside!

Tillie and her cake!  Dig in and celebrate!

There are years of follow up for Tillie.  She will have some tests, including and echocardiogram for her heart, to make sure all is ok..there may also be some neurological testing done too as some kids suffer from learning disabilities following treatment..Tillie seems to be doing fine in school so far..can Grandma say TOP OF THE CLASS!  

In the summer, Tillie will have a small, outpatient surgery to remove the port from her chest.  The next "battle" will be for her to allow her finger to be poked for the blood draws.  I have a feeling some of us will be guinea pigs to show her it's not a big deal.  It will take some time, but she will be fine with it!

We are so thankful for all of your support and especially your prayers for Tillie! Tillie's doctor shared with Emily that kids who have a faith background do better in their treatment and outcomes! We serve a mighty God!

Scott Firefighter Stairclimb

One of my friends, Abbey van der Meij, is participating in this event and is instrumental in Mason County District 11's honoring of Tillie in this event.

 

If you would like to donate to the Leukemia & Lymphoma Society, make checks payable to them and mail to me at:

 

PO Box 1748

Shelton, WA 98584

 

Thank you dear friends!

NO MORE CHEMOTHERAPY

At Tillie's appointment in December, Dr. Irwin informed us that she would be finished with treatment in January!  You could have knocked us over with a feather!  We had no idea.  Maintenance is 2 years and we thought she had started that in July 2011.  But it's based on the Interim Maintenance Phase which started January 2011.  What a HUGE surprise and blessing.  Still not quite grasping it all, we thought her last IV treatment would be January 18th.  Oral chemo finished on the 10th..so when we went to her appointment on the 18th, there was no IV chemo!  SHE IS FINISHED!!!!! 

 

This is Dr. Irwin, the best pediatric oncologist out there..in my humble opinion!  He loves what he does and he loves his patients!  What a wonderful human being and a huge blessing from God!  We can't imagine this journey without him!

 Here is Tillie and Dryden.  Dryden is 4 and was diagnosed a few weeks after Tillie and it was her last day too!  It was also princess wing day at the clinic.  There are so many generous people who donate all kinds of things to make this whole process easier for the kids and their families. 

 Tillie and Ravis..."sharing"

 Here is Robyn, the Child Life Specialist here with Tillie..she's there to help the kids in any way possible.  If I wasn't able to be at an appointment and Emily needed help, Robyn was there.  She does arts and crafts with the kids, plays with them...she's wonderful!

 And Ravis!  What a trooper this little guy has been...Two thirds of his life has been a sibling of a cancer patient..in the early days of this adventure he was bounced around from place to place and has done so well!!!  He's 3 1/2 now! 

 Where else do you have your exam while looking out at all the birds in the yard!

 This says it all!!!  Thanks to Uncle DJ for making Tillie's sign!

Where does Tillie go from here?  Some parents find the end of treatment a scary time, but Emily and Anthony (and the rest of us) are so glad it's finished!  Tillie will have monthly check ups and blood draws for a year..then every 3 months, 6 months and finally she gets down to once a year!  In the beginning Tillie was a high risk for relapse because of her initial blood counts, but she is also considered a rapid responder because after her first treatment the number of cells with cancer went from 80% to 20%!!!  Dr. Irwin has repeatedly said a couple of things...one was that Tillie has far exceeded everything he could hope for and he's also said that it's Tillie...anything can happen!  When she had the staph infection at the beginning, Dr. Irwin had never seen anything like that..You may recall she had a few hospital stays because her numbers dropped when she got sick...Her ANC count was all over the board during treatment and Dr. Irwin would say..."That's Tillie!" 

 

After her appointment, she and Ravis were running around while we were waiting for a prescription at the pharmacy. (She will be on antibiotics for 6 more months)..We were talking with the social worker and she said Tillie would be at full strength in about 6 months...and then she laughed..Tillie has been going at full strength through most of her treatment!  God has blessed this little girl with such a fighting spirit.  She is an amazing person..We started calling her Tornado Tillie long before she got ill and that nickname became a character trait that was instrumental in her fight!

 

The journey is winding down, but we will continue to keep you updated here and on her Facebook page.  We are so thankful to all of you for your love, prayers, support, etc!  We couldn't have done this without all of you! 

 

We want to leave you with this video of Tillie singing "I Cast All My Cares Upon You."  This was several months before she got sick.  I think it was prophetic!

Time For An Update

 

Wow, it's been awhile since our last update...It's been a busy 3 months for Tornado Tillie! Our last post ended with Tillie starting kindergarten...She is taking Whitman Elementary by storm!  Tillie LOVES school!  It's all day, 5 days a week kindergarten!

You learn many games in kindergarten.  One is Red Light, Green Light!  Tillie lost that game!  She collided with a classmate and fractured her wrist.  It was a slight fracture and with chemo bones can become weaker.  She sported a purple cast for 3 weeks.  She was also at the clinic that day for a blood draw as her counts were dropping.  What that means is her ANC (Absolute Neutraphil Count) drops.  The neutraphil is the part of the white blood cell that attacks infection.  Later that night, Tillie ran a fever and the next day Emily took her to ER. 

Tillie's ANC count was zero!  Not good so she was admitted to the hospital!  Lest you feel sorry for her, don't!  She had a week of volunteers and arts and crafts!  Because her counts were non-existent, she was "confined to quarters."  So, volunteers come and play with her, bring toys, etc.  This is especially helpful to Emily because as Tillie is hospitalized, so is Emily.  She stays there with Tillie.  This happened in October and Tillie was in for a week.  She finally got to go to the playroom the day she was discharged.

 Tillie missed a week of school, but that was ok.  She is doing REALLY well.  Grandma gets to brag!  Tillie's at the top of her class!  She loves to learn and is excited to read!  Kindergarten seems to be the new 1st grade.

 

This picture is an example of the arts and crafts they have for the kids!  Tillie loves her arts and crafts!

Here's Tillie and Andi Pistay at Thanksgiving.  Two years ago Andi had Tillie help with the whip cream..Tillie freaked a little bit with the mixer!  This time she had no problem..I think we have a new tradition going on here!

And here, is a little sidenote! This little guy, Tillie's brother Ravis has also been a trooper through all of this. Often times his little life gets disrupted. This last hospital stay, Ravis stayed with his other grandparents, so he didn't have to go to daycare. Ravis is 3 now, and he's a little guy and doesn't talk much yet. But we've all noticed since Tillie's gone to school, he's talking a bit more. Funny thing is he knows exactly what's going on! In this picture he's looking at our digital picture frame. The pictures are from the Make A Wish trip to Disney World. When a picture of Ravis came up he said "Hi Me!" Hahaha! He's a great kid!

In October or so, Tillie knocked one of her top front teeth and the gum darkened.  Emily took her to the dentist and there was a pocket of infection in there, so an appointment was made to pull the tooth. Actually, they pulled 3 teeth..all baby teeth.  Her front two teeth and an extra tooth Tillie had...so this the before picture.

 Here she is with her goggles and laughing gas!

 AFTER!  All she wants for Christmas is her 3 front teeth..she'll only get two though!  Hahaha..the extra tooth doesn't have an adult counterpart!

 

We are so thankful to all who love and support and pray for Tillie and her family!  God is faithful!  

Happy 6th Birthday Tillie Anne

Today is Tillie's 6th birthday and tomorrow it will be 2 years since Tillie's leukemia journey began!   Leukemia is not something we would wish on anyone, but we have been blessed in the journey.  The people at Mary Bridge are INCREDIBLE!  Make a Wish is FANTASTIC!!  Give Kids the World, Disney World, Sea World, Alaska Airlines....WONDERFUL!!  Family..THE VERY BEST!!!  Most of all, the folks who have been praying along the way...INDESCRIBABLE!  Without your prayers and support this would have been a much harder journey.  Tillie's doctor often says that Tillie has exceeded all his expectations and she's always surprising him!!

 

Life goes on and on August 9th, Tillie lost her first tooth!  Apparently the tooth fairy was a little late and she paid interest!!  Hahaha!!!

On Saturday August 25th there was a walk for CureSearch for childhood cancer.  Because Tillie had a fever Thursday, she didn't participate.  The organization came to the clinic and for the kids who couldn't do the walk they brought them gold medals.  They let Tillie know proud they were of her for her courage in going through her treatment. 

A new chapter in Tillie's life begins on September 5th.  Kindergarten!  Tillie will be going all day/5 days a week.  It will definitely be a change for the Maier Family!  She is definitely ready!  I asked her what she wanted to learn and she said music and art!  She also wants to learn to read her own books and some math!  Look out Whitman Elementary, here comes Tornado Tillie!!

Finishing Year One of Maintenance

Tillie has finished her first year of maintenance treatment!!  One more year to go!  In June, Tillie's hair started to come out again..mostly on top and a little on the bottom.  The hair loss has been the hardest for Emily as it is such a stark reminder of Tillie's cancer fight!  Fortunately Tillie seems to be unaffected.  Tillie starts kindergarten next month and I asked the doctor how kids deal with perhaps being teased about it and he said generally at that young age it's not a problem..and if needed, the social worker and child life specialist will visit the classroom and talk to the kids about what's going on with Tillie.

Here are Tillie and Ravis with their Great Grandma Linda! (Reg's Mom)  They got to visit recently!  This is such a precious picture!

 

Tillie had a little hiccup in July!  She caught a bug with a fever of 102 degrees.  If she gets a fever of 100 or more, she needs to go to the clinic or ER.  Because it was late at night it was a trip to the ER.  I drove up to Tacoma to support Emily....that was a fun drive as it was during one of our rare thunder and lightening storms.  Tillie was not admitted, so at 4AM, we went back to the Maier's home.  Tillie had an appointment that afternoon and once again, she amazed her doctor!  A brief history, when Tillie was first diagnosed, her numbers were so bad the doctor told Emily and Anthony that an adult would be dead and Tillie should have been unconsious at the very least..well she wasn't...she was directing the whole show!!  So, what was exciting about this latest episode was that instead of her white blood count and neutraphil count going down, they went up!  Just like they would in a healthy kid! They did their job to fight the infection.  That was cool!  So, the bug ran it's course, Ravis got it next and now both are just fine!

As mentioned above, Tillie starts kindergarten in September.  It's all day, 5 days a week!  A whole new adventure!  She has been practicing her letters and is getting quite good.  For those of us who went to school a while ago, kindergarten is more like first grade in our day. 

More to come once school starts..............