Full Circle

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(pic above, car ride to the Hospital for Lulu’s surgery)

Full Circle

http://chw.wistia.com/medias/1ebjs89ldn (Bell Ringing Full version- Professional Video from Children’s Hospital)

Today was a big day:  Lulu went back to school.  It’s a strange feeling and it’s still sinking in.  I feel on the verge of tears.  I’d hoped to feel elated and bouncing off the walls, but I mostly feel … gosh, I can’t even find the words to describe it.  I think it will take a while to process the 2.5 years living in Crazy Cancerland to moving back into a new normal.

Lulu’s surgery went well, but was more complicated than predicted.  The surgeon called us into THE ROOM” that you never want to go into, which brought back a flood of emotion and memories of her multiple shredded appendix-on-heavy-chemo surgeries.  Our zen-master 6-foot tall & beautiful female doc calmly informed us that the port removal was easy, but they had found 2 instead of one hernia, both of which were larger than anticipated and interlaced with omentum (fat the leaks through hernias).  Lulu’s recovery proved that point true, as she struggled to move at all the first two days and didn’t stand or walk until the 3rd day.  But our Little Tough bounced back quickly after that, reminding us of the incredible healing powers children have.

While at the hospital, I felt so lucky to have seen two nurses that have been a special part of our journey.  First Leann — who was there in the darkest times when we were in ICU — a girl I know I would have over for dinner, walks and java on the front porch if we lived closer to each other.  She called me while we were in the waiting room, bubbling with excitement to have us on her docket in the recovery room.  I showed her the long version of the bell-ringing video (Link included at the top of this entry), and then Becki, another fave nurse, bounded over to give us hugs.  I replayed the video for her, Lulu still asleep between us, and she couldn’t stop the tears from continuing to roll down her instantly wet cheeks.  It made me count our blessings once more, that we’ve had such amazing care at Children’s Hospital, that so many nurses and doctors care so much for each of their patients, and have really become a part of our lives.  That was clear form the turnout at the bell-ringing too, seeing so many caregivers take the time to attend, watching them cast their eyes down as they shed tears of relief and joy for their special patient as the bell rang out.

We realized how powerful this moment must be for them, as well as for us.  As many times as we’ve been to that hospital and clinic, I only remember ONE other bell-ringing ceremony.  That’s a shame.  I’m sure the doctors and nurses don’t experience this powerful full-circle moment enough either, especially those that work on the H.O.T. unit, ICU, or other wings of the hospital.  I’m so grateful to have this special video to share with them, and others, to signify this success story and the journey and the hope that it inspires.

As I write this, I think the word that best describes how I’m feeling right now is humbled.  — So grateful to be one of the lucky ones, hoping and praying it holds, and never forgetting all the other children we’ve met along the way that we will continue to fight for.  Thank you all for being a part of this journey, holding us up when we’ve needed it, walking beside us when we’ve needed a hand to hold, catching us when we’ve fallen.  We’ve learned so much about love, the power of a community and how much difference ONE person … or one little girl … can make.

Thank you.

a.l.l. of us

Lulu Rings The Bell!!!

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Hello Dear Friends,

At last, the day finally came and our little warrior princess got to ring THE BELL!
I wish i had more energy to write about the incredible day yesterday, but if a picture is worth a thousand words, this video is worth a million!!!
Enjoy:

https://www.youtube.com/watch?v=J7K6NIEPKtg
Please keep us in your thoughts as Lulu goes in for her last surgery Tuesday.

Gratefully,
A.l.l. Of Us

Nearing the Finish Line

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Hello Friends,

I just had to post again as I vacillate between giddy delight and emotional overwhelm. It feels like we’re all just holding our breath … unbelieving that it’s really almost here: MARCH 6TH, and MARCH 11th: Lulu’s last day of chemo and last surgery.

It’s been a special week. I was honored to have my children’s book The What If Book featured with our story for a fundraiser for Ridin’ For Research. It was SO powerful. The pages of the book served as a backdrop while video of our story was woven between moving narration. I was really choking back the ugly cry as pictures of Lulu came onto the two ginormous screens; reliving the story in bold face as it played out. We went on stage and passed out rainbow bracelets to everyone there which read: “Never stop wondering WHAT IF?” I can’t thank presenter Kim enough for her hard work on this event, her attention to detail and the research and respect she paid to our story, as well as Bo Johnson’s. Carol, the illustrator, and I did a book signing afterword and Lulu also signed each and every book, adding in a special bit of art with her signature. It was adorable and she stole the show as usual :-). I’m very proud to have been a part of it, and the event raised over $70,000 for cancer research!!!

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Max kicked some major bootay at Forensics this week, finishing his first season with 5 blue ribbons in solo comedy, culminating in the Power Rounds where he went up against 7th and 8th graders to walk away with the overall first place trophy! I continue to be amazed with how well he’s done despite his sister’s illness. He’s quietly and deeply affected by it, while managing to be there to make her laugh when she needs it, and still an imperfect enough big brother to remind us all to appreciate some normalcy.

Lulu is literally checking off the days on her calendar, also giddy and sensitive. She’s vomited the last 2 days in a row from her chemo, and feels ‘floppy’ but also extremely excited to give the nasty chemo dragon a permanent goodbye. It’s a lot to digest for all of us. We’ve been running into the wind for 2.5 years, heads down, completely focused. The thought of that force of air being cut off and calm seems almost unfathomable. I expect a tidal wave of emotion may come from behind us to fill that stillness …

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with love,

a.l.l. of us

Counting Down!

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One week from today is Lulu’s LAST dose of chemo! 5 days after will be her port removal and hernia surgery. WOW, It’s really almost here. I wish I could report an uneventful week, but never a dull moment ‘round here …

Jimmy got a horrific flu, which was passed on to Max. I’ve never seen either of them that sick before. And why is it that boys can’t seem to hit any sort of receptacle, be it potty training or vomiting? He erupted like a volcano, all over himself and me, in every nook and cranny of the bathroom floors, walls and grout, while I looked over at the view of the pristine toilet. We spent the night on the bathroom floor together – after I cleaned up the first round and he got his rhythm and aim going! He got to be a downright expert, getting lots of practice every 15-30 minutes for over 8 hours.

While that was bad, we knew we had to protect Lu from getting it. Since I was likely exposed and Jimmy was recovering, I stayed home with M. This is one of those times I wish we had an adopt-a-family program. With nowhere else to take her, off she went to a hotel with Daddy for 2 nights. They had a great time though, and Lulu swam like a fish in the pool as often as possible. 4 days later today, Max is back to school, albeit a waifier version of himself. Seriously, the two skinny guys get the flu and here I sit with my extra lbs of what I’m calling ‘stress weight’? What’s the saying, I’m one stomach flu away from my goal weight? Ok, not really worth it… the gym awaits.

The good news is that Lulu is doing really well, and fingers crossed she will not get this flu so she can get through this last leg of treatment and surgery smoothly!!! She just LOVES homeschool. Her favorite subjects are Recess where she plays outside in the snow, Math – on a great app for addition and subtraction, Reading – her favorite book series Ivy and Bean, and P.E. which consists of chasing mommy around the house and scaring each other into screams by flying out from around any hidden corner. Oh, and Lulu told me Jimmy got to ‘sub’ the other day while I was working. I had to chuckle when she told me about her favorite new class called OPEN GYM. Apparently, this was free time, where you can choose whatever you’d like to do; Lulu made art and Daddy took a nap.

Cheers to 3pm March 6th. Keep your ears open for that bell, if you listen closely, you just might be able to hear it!

Love,

a.l.l. of us

Quick update

 

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Hello Friends,

Just a quick update to let you know all went well with the Immunoglobulin transfusion!  Besides a horrific tantrum that came out of nowhere (caused by combo of bad reaction to benadryl and steroids), she got through it beautifully.  Praying for no long-term effects.   She’s bounced back remarkably, as only a child can, and the fevers have subsided for now.  She was even able to take a few minutes to play in the snow Valentine’s Day.  Notice the heart around her?  I feel it is a good sign of things to come, as well as a symbol of the love that surrounds her by all of you, our friends and family.  

We are going to keep her in a bubble, or bubble-wrap, or flea-dip her in antibacterial gel for the next 3 weeks, but  WE CAN DO THIS!!! 

Much love, 

a.l.l. of us

So Close and Yet So Far

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We’re SO close to the end, less than 4 more weeks of therapy, which makes the events of this last week that much harder.  Since I always like to get the bad news out of the way first, I’ll start with that.  It’s been an eventful week with lil Lulu.  We ended up in ER again, this time with 103.7 fever, headache, vomiting and wicked-scary cough (the biggest concern with leukemia patients since this could turn into pneumonia).  Our good friends took Max so Jimmy and I could both go in with her.  You know the drill by now: total panic and desperate crying from Lulu when she finds out we’re going to E.R., the usual tests, prodding, poking, fluids etc. … We ease the pain and much as we can, and ever since the infamous 4-nurse and 6-missed port pokes, we ask for someone to come down from H.O.T. to access her difficult port.  We were SO lucky to see our dear Linda come down.  This is the nurse that Lulu once told me if she could have another mommy, she would want it to be Linda.  It was like seeing family when she came and helped tremendously.  Hours later, her counts came back high enough that we could leave for that day.

Day 2, fever returned.  I took her in so Jimmy could stay home to protect Max from seeing his sister go through it all.  Repeat of above plus heightened anxiety and, luckily, another great nurse from H.O.T.  She was additionally given Tamiflu and antibiotics.  Her fever finally seemed to break.  We left at 11pm only to return to clinic the next morning.  This time for surgery consult (for hernia and port removal), chemo, bloodwork, and nose swabs.  That’s 3 days in a row of port-poking and rollercoaster anxiety.  I must tell you though, that as petrified and Lulu has been (literally shaking and crying with fear at times), she always pulls it together and finds what we call her ‘brave spot’ to get through the actual procedures.  She truly amazes me and I continue to be impressed by her sheer will and tenacity.  She even seemed to be bouncing back and so much better that afternoon.  We also had an unexpected visit from Bo’s mom Annika, which brightened our day immensely!  She and her crew were donating a $10,000 check to the MACC clinic from The Go Bo Foundation.  We just love them and the work they are doing.

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(Elephant to color on from Annika)

Long story short-ish, we’ve found out she has Human Metapneumonia virus and, as the name would indicate, one that can turn into pneumonia.  We also found out that her IGG (immunoglobulin – important component of the immune system) is low, which may be why she’s been getting sick more often and severely.  She will need and infusion of this, which can be risky.  Allergic reaction is possible (we NEVUH want to go through that again) and because the product is harvested from over 10,000 blood donors there is risk of contracting serious viruses.  Of course, we’ve consulted with the nurses and doctors, read the information and feel this is a necessary risk.  She will receive the infusion over 4-8 hours tomorrow.   Please keep her in your thoughts.  We are so close to the finish line!

Which brings me to the good news that’s really great news: March 6th will be her VERY LAST DOSE OF CHEMO!!!!!!!!!  That’s right, a mere 3 weeks away!  She will have a highly anticipated day at Children’s where she will ring the bell, signaling the end of her treatment.   We’ve heard just a few others ring it, and it’s the best sound you’ll ever hear.  Both Jimmy and I get choked up just thinking about it.  She is scheduled to have her hernia surgery and port removal on March 11th, barring any illness or low blood counts.  The light – no, the rainbow– at the end of the tunnel is brightening, just have to move through these last storm clouds.  We have decided to homeschool her until she is finished with therapy.  Her doctors and teachers concurred, knowing there is strep and flu prevalent in the school right now.

The first year off therapy she will have monthly blood work and checkups.  Year 2 will be bi-monthly, I’m foggy on the rest, but I believe years 3-4 will be every three months, year 4 will be every four months, and year five will be every 6 months.  After year 5 we use the word CURED.  Have you ever seen a prettier word?

I’ll try to keep updating you in shorter spurts over the next few weeks.  Thank you for your continued support, love and good juju for lulu — and a.l.l. of us.

Out Like a Lion …

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(pic above: our 2-year holiday card)

Out like a Lion …

2013 left us with a microcosm of the ups and downs of the year wrapped up in one day. Looking back, it seems fitting … but I’m glad that it’s come to a close. New Year’s Eve was our 13th wedding anniversary. We’d hoped to celebrate, starting the day off in an extremely promising way by closing on a house in the neighborhood and school district we’ve been looking in for years. My friend took the kiddos so we could steal away for a romantic brunch, but both Jimmy and I were preoccupied and restless. Lulu had seemed a bit under the weather, and our beloved kitty Gizmo was recently diagnosed with diabetes. We finished eating and raced home, hoping to catch a little more time together. Fate had other plans.

Gizzy, ‘Drool-monster’, ‘The big Schmoe’, was lying on the floor stiff and almost lifeless. We raced him to the vet, but his breathing was shallow and he was barely moving. He did perk up enough to give me a couple of sweet nuzzles which I will cherish. You see … I was his special person (and don’t tell Sugar, but he was my favorite kitty). We left him with the vet after getting a call that Lulu had a fever. Off to the hospital with both kids we went. We were so happy to see Lulu’s usual nurse Bonnie who is bestowed with magical skills, I swear. We underwent the usual barrage of port access, blood draws, IV fluids, meds, and the dreaded nose swabs. Lulu was really anxious since we’d had quite a few unexpected trips in recently. She was having a difficult time shaking a flu she’d gotten, and it kept rearing its ugly head in the form of fevers. We kept quiet about our kitty, so as not to upset her any further. After only a few hours we got the green light to go home, with permission to give Tylenol for 24 hours but bring her back if she fevered after that. It was exhausting for everyone, as it always is and we were so relieved to get home. The dreaded call soon came in from the vet; Giz had left us for the great fields of catnip beyond. It seems almost silly to be so upset over a little furry friend, but that cat was a part of our family for almost 16 years. It hit us all SO much harder than we expected. Happy New Year. We waited until the next day to tell the kids and we all cried openly together, huddled on the family sofa, telling stories of this character whom had touched our lives more than we knew. It turned into an unexpectedly bonding moment for us, so we took that from it.

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During this time we had water damage to our almost former house after a pipe burst in the attic, literally raining down over the floors below. I really thought I might lose it! I just kept saying “no, NO, NONONONO!!!!”, like machine-gun fire. We also had a tub overflow and damage the soon-to-be new house flooring within the week. It seemed we were on a Lemony Snicket-driven course, accompanied by the bitter cold of the winter. Interestingly, it didn’t take us down. I didn’t lose my mind (really, I swear!). Oh, it had its moments, but there were a few gentle reminders that came in to help put things in perspective for what they were; just a series of unfortunate events. A friend (whose granddaughter had also been through leukemia) gave me some pivotal advice when I told him how hard it was every time we had to go back to ER. He said it’s difficult because it’s a reminder of just HOW FAR YOU’VE COME. What a gift those words were.

We have indeed come so far, and it’s really not that bad. Our little friend Kate and her family have weathered a much harder and unrelenting course through her A.L.L. , and she wrote on her Caring Bridge about a blog entry I’d made in 2011 that had helped her through a trying time. That too, reminded me of how much better things are now … and what a blessing our family, friends, and life are. We were recently taped for a video segment on a new cancer drug, and asked how things were going. Without hesitating, Jimmy said “Great!” and meant it. After a small beat, I thought … he’s right. Things are great. We are all ‘healthy’ and Lulu is nearing the end of her treatment. We are weathering the storms and have seen many rainbows between the clouds.

Spring will be a fresh start for all of us. We hope and pray it comes in like a lamb!

Love, a.l.l. of us

Special Sibling Surprise to Share

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Hello Friends,

I was recently doing hair and makeup on a photo shoot with a model who is dating Packer tight-end Ryan Taylor. She overheard someone asking me about my daughter, who is currently being treated for leukemia. I told her a bit about Lulu, age 7, who is 3 months from finishing a tough 2.5 year chemotherapy course. I also told her about my 10-year-old son, who has been amazing through it all. She generously offered to send him something from Ryan. I knew that would mean so much to him since he is a HUGE Packer fan. 

It’s more difficult than we realize, for the siblings of those going through cancer. The sick child is given so much time, attention, and showered with gifts. Often, the well sibling is overlooked… Our son has been nothing but gracious through it all, never showing a sign of jealousy or crying out for attention. Making his sister laugh when she needed it, and hugging her at just the right times. 

Today, a box arrived in the mail for him. Inside it was not only a signed photo from Ryan Taylor AND Randall Cobb, but a number 12 signed jersey from AARON RODGERS !!! 

I’m so grateful to be able to share this beautiful Christmas story with you, to thank Abbie for her thoughtfulness and Ryan and the Packers for their generosity. Lulu continues to be up and down with nausea, vomiting and pain, but she is incredible; a force to be reckoned with.   We are still pushing through to March 6th, 2014 when she will take her LAST dose of chemo!  

Happy Holidays, 

T. Marie and a.l.l. of us

A Little Rain

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Chemo, the double-headed dragon, continues to both protect and punish our little girl.  Lulu’s been sick more often and severely as of recent, vomiting and experiencing periodic, but intense pain in various parts of her body.  We assume it is the accumulation of toxicity caused by over 2 years of prolonged chemotherapy.  I mean, there must be a limit to how much a little 43 pound-er can process, right?

It’s difficult to take on many levels since we’ve been living in (relative) blissful denial over the last few months.  We try to live our lives ‘as if’ there is no cancer … giving the kids and ourselves as much normalcy as possible.  However, an unexpected and traumatizing trip to ER can snap one back to reality in an instant.

The fever came on at about 1 a.m., fast and furious.  It started at 101.5, and quickly jumped to over 103 accompanied by a throbbing headache.  I took Lulu to ER at Children’s and Jimmy stayed home so Max could sleep.  I wish I could tell you it was a quick and easy visit, but it was far to the contrary…  As we checked in, she was shivering and crying, very uncomfortable from the fever.  The first two nurses came in to access her port (appliance that is installed beneath the skin that connects to a vein for administering medication and drawing blood).  ER isn’t very familiar with ports, and Lulu’s is especially tiny and challenging.  After the first nurse poked her twice and failed, I insisted we get someone else.  The second nurse came in and I tried to stay calm for Lulu who was now reaching hysteria, so that she would still have faith in the caregivers.  Two more pokes with the one-inch spike and no luck.  This is unprecedented.  Lulu is now completely losing it, screaming through tears at the top of her lungs “THIS PLACE IS EEEEVVVIIIIIIL!!!!  IT”S EEEEVVVIIIILL!!!!!” begging and pleading with me to take her home.  This almost struck me funny, seeming like something out of the Exorcist.  We don’t use the word evil around the house regularly, and it seemed out of character for her to use it. I firmly asked the nurse to get someone form the H.O.T. unit, and ask for our friend Sal if he’s working.  He was.  I was relieved, but I also knew that H.O.T. doesn’t do a TON of ports either.  Clinic is where the expert ‘pokers’ are, and they only work 9-5.  I knew Sal would at least calm Lulu down, which he did the moment he entered the room.  He and his teacher wife actually babysat for our kids over the summer, and he had been our first night nurse ever.  To say we have a special relationship with him is an understatement.

Unfortunately, he too was unsuccessful.  I later learned from his wife that he had frozen after Lulu winced.  He had come to feel differently about this little girl than other patients and that touches us deeply.  The next nurse that came in for the 6th or 7th poke and seemed to have gotten it in securely, but it wasn’t drawing.  It seemed it was now plugged on top of everything else.  At least the damned thing was in and Lulu could stop being a human pincushion!  Now we would have to wait for the TPN (think liquid Drano for ports) to work its magic.  Sal hung out with us for a little while longer and Lulu really calmed down.  He left and Lulu vomited 5 times.  Ugh.

It was nearing 5 a.m. and after two rounds of TPN, the port finally drew and they could get Lu’s blood counts.  We had to be sure she had enough white blood cells to mount an immune response to the flu, a danger for these kids.  Her counts were high, which was a good sign.  Jimmy and Max arrived at 6 a.m. so I could leave for a job an hour away.  I hadn’t had time to get a replacement, and frankly needed this job since I had been taking time off more regularly to be with the kids.  Lulu’s fever dropped after finally getting Tylenol.  She was stable, calm and sleeping at last.

They all had a long next day as Lulu was transferred to the MACC Clinic where she was administered IV chemo and had to endure the dreaded nose swabs to test for flu.  These are very painful and scary for her, but apparently big brother was a rock-star, comforting her throughout, hugging her through the pain and making her laugh in between events.  He didn’t even complain a bit about the 5a.m. wakeup to go to the hospital.  We are so proud of him.  Now, how can we get him to change the litter box without complaining?!?

She was released the next afternoon with Tamiflu and other meds.  She seemed to bounce back so quickly!  But then the fever rose to 104.1.  Ugh.  We were told we could give her Tylenol for 24 hours, so we stayed on top of that and the fever broke again. This went on for another day and finally finished its course.

She’s continues to be up and down from the effects of the chemo.  When she’s up, you’d never know she wasn’t like every other kid in the world and then some; an amazing creative force.  When she’s down, it scares the hell out of me and is not a gentle reminder of what’s continuing to be present in our lives.  Seeing her in pain and lethargic is … well, you can imagine.  She has been taking oxycodone (you read that right) and anti-nausea medications to help combat these effects.  We can’t give her anything that might mask a fever like Advil or Tylenol.

But, we know we are still the lucky ones.  During this new holiday season, we know far too many families who no longer have their little ones to eat turkey dinner with, to decorate the tree with, to buy gifts for … and still more who are in the hospital enduring their own treatments.  So, I continue to write to you all, about the good the bad and the fuggly of cancer, to raise awareness and hope that this holiday season you might think of one of those kids as your own, and donate in your own way your time, energy or money to help fight this disease.

Love,

A.L.L. of US

Self-indulgence

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I’ve been self-indulgent. And needed it. I’m sitting in a hotel, overlooking a beautiful view where the trees surround and seem to hug the lake within. The colors are so rich and vibrant they fill my senses in a way no vitamin could, but my body desperately needed. It’s been two full days of time. Alone. I’ve barely left my room. I watched the entire season of Orange is the New Black. That’s 13 episodes friends! Laazaaay and loving it. I had lots of plans to write, read, and catch up with my life. But I listened to my body that clearly said REST!!!  I should add that I’ve been very sick for a couple of weeks now, and that’s no good for anyone, especially Lulu.

The summer left Jimmy and I exhausted, and I think the almost 2-year battle with Lulu’s cancer is still catching up. It doesn’t feel right. She should be done by now, and have her port removed. She’s been doing so well… Yet, it will rear its ugly head again tomorrow when I take her in for her monthly treatment with spinal tap, chemo, and steroids … 6-ish more months and counting.

There was no time for even a small vacation this summer with Jimmy working on The Surface movie, gone physically and/or mentally for eight weeks. It was awesome seeing him in his glory though, as he commanded quiet respect from the cast and crew, working diligently, intensely and uncomplainingly to create the best possible outcome. I did makeup a few days on the set, and was glad to be able to see it all in action. There was a tangible excitement, especially from the local crew, enjoying this process despite its great demands. One of my personal highlights was working with Mimi Rogers; a true gem. She was so open about her life, even sharing pictures of her beautiful children with me. She’s gorgeous too, even as the ‘earthy’ character she plays.

While Jimmy was engulfed, I held down the fort, hanging with the kids and their summer activities, giving daily meds, and working. I’ve become very unhealthily attached to my phone, working between/among the bustle of life. This realization became clear when a friend told me she knows she loves that she can text me at any time and I’ll always respond immediately. Hmmm, that might be a compliment, but I know I must wean. Between my beauty editor job, freelance work and my book, that phone has become an additional appendage (Did I mention The What if Book was published? I’ll make a big announcement in my next entry, just act surprised, ok?)! [Note to self: work on marketing skills]

I have one more hour of alone time, so I’m going to sign off now. I’ve really missed writing to you, and writing in general. I know this entry itself was a bit self-indulgent, but I think everyone should allow a little time for self-care … I hope this gives you an excuse to take some for yourself.

Love,

T.Marie and a.l.l. of us

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