When to Say When

When we went to St. Louis Children’s Hospital in October 2011 and was told, “Your child has cancer”, naturally, the plan was to fight. To do everything in the doctor’s power to get rid of Sebastian’s cancer. So, that’s what we did, and Bastian was led down a path that consisted of chemo, radiation, bone marrow transplants, pain, nausea, more chemo and more pain. He spent countless days in the hospital, missed out on school and friends and birthday parties and swimming. He lost all of his hair, and a quarter of his body weight. The treatments made him so very sick. And all the while the scans continued to show no disease improvement. The treatments were not working.

In June, the side effects of the chemo and radiation caused him to have to get a urinary catheter due to damage in his bladder. Complications from the catheter landed him in the hospital for 12 days with several infections. Right about the time he was being released from the hospital, his docs gave us the treatment options available for him. After several discussions about what the options are, Sebastian finally tells us, he doesn’t want to do this anymore. He doesn’t want to keep making himself sick. He wants to stop.

Imagine making this decision for yourself, knowing that nothing you do will take your disease away, and everything you are doing is potentially causing more pain and more problems. Would you know when to say when? At some point, the desire for quality over quantity would present itself, and that’s where Bastian is.

We’ve known for a long time that we would be faced with this decision; I just didn’t think that Bastian would be the one to bring it up. The docs told us a long time ago that there is no chance of curing Bastian’s cancer, and that everything we are doing is an attempt to give him more time. After his last stay in the hospital, Bastian said he wanted to spend the rest of his time with the people he loves, not taking things to make himself sicker, and not constantly being hooked up to IV’s. He wants quality over quantity. His decision was not accepted by a lot people in his life, particularly his peers. They don’t understand how “he can just give up”; they think he should try every single thing possible. But those of us close to him know that this isn’t him “giving up” or “choosing to die”, this is him choosing to LIVE.

This is the ultimate act of letting go. Letting him make this decision, and follow through with it, means that we aren’t doing anything to slow his cancer growth, and that he will die from his disease. But letting him make this decision, and follow through with it, means he gets to live the rest of his life on his terms. And that is much more important to us.

Stopping cancer treatments is a difficult and painful decision.  Have you experienced something similar?

Doorways to Arkomo Review & Giveaway!

When Jacqueline Dooley contacted Lacuna Loft about her new book, Doorways to Arkomo, I was really excited to read it.  Once I read it, I was really excited to share it with my favorite 13 year old, Sebastian, who is dealing with cancer himself.  The book is about two, 11 year old girls, one from our world who is also battling cancer and one from a fantasy world called Arkomo.  All proceeds from the first year of sales will be donated to different charities and organizations that help children with cancer and other illnesses.  You can read more about the author’s pledge to donate here.  The book is a great gift for children, aged 9-12 or anyone who likes reading fantasy novels!

—

Mallory’s review:  I found Doorways to Arkomo to be an inviting read that a few chapters into the novel pulled me in completely.  The book explores two different worlds: our own and Arkomo.  In each world is a young heroine, fighting to be like everyone else though each one is battling something different.  Grace, from our world, is in and out of the hospital throughout the book due to a cancer diagnosis.  Sorel, from Arkomo, remains a hidden secret in her world because of a complicated prophecy.  The book spends some initial time going back and forth between the two worlds.  I found this part of the story to be the part I liked least.  There was clearly important information about the Arkomo world that was frequently hinted at yet not divulged….I find this frustrating in any book.  I also would find myself wanting to return to the world of the previous chapter for the first few pages of the next one.  I know many people who like a good teaser though!

After a few chapters, I was hooked.  The book is written for a younger than me audience yet the physical descriptions and character development are wonderfully composed.  The honesty with which the novel approaches childhood cancer, including all of the extremely messy emotions involved from the side of parent and child, is like a breath of fresh air in comparison to today’s media where cancer is being glammed up by Hollywood.  Doorways to Arkomo is about friendship, survival, and about facing something incredible with courage and strength.

Bastian’s review (as told to Mallory and paraphrased):  I’ll say one thing, the book was really good and I can’t wait for the next one.  The book was very real.  Kids get sick.  These things happen.  I could really understand Grace’s emotions as she was in the hospital and preparing for treatments.  I hated the doctors and the nurses just like she did.  They were doing all of the things to me that were so uncomfortable.  The fantasy in the book makes it so that the reader isn’t depressed the whole time though.  The bits of fantasy in between the parts of the story set in our world help to lighten up the story.  I’m really excited to read the next book.  I didn’t even read the teaser for the next book at the end of Doorways to Arkomo because I wanted to wait.

Other things Bastian told me while we were hanging out…I didn’t really like talking to the other kids at the hospital.  You always end up talking about why you’re in there and I didn’t want to talk more about my cancer and all of the tests.

—

Alright!  Now is the really fun part!  A GIVEAWAY!!!  You can get your very own signed copy of the book for free!  All you have to do is comment here on the blog post or on our facebook page and offer up your reason for wanting to read the book!  Maybe you love fantasy books, maybe you know a young person suffering from cancer or a young person who loves to read?  We want to know!  🙂  If you are interested in buying the book, you can purchase it directly from the author (for a signed version) or on amazon in paper formor ebook.  Jacqueline’s next book, Doorways Home, is expected out this year!

As always, let us know what you think once you read the book!

Three Lessons Learned As A Mama Facing Cancer

“Are you going to die mama?” my 4-year-old asked me right before I left for my first chemotherapy infusion.

I was at a loss for words, not because of the question, but because I was reminded in that moment that children pick up on our energy so easily. This was one of the great teaching moments throughout my experience of undergoing treatment of advanced, widespread cancer. The field that the cancer opened up for me was a gift and what I learned about motherhood was a blessing in the midst of muck.

1)  Letting go is necessary.

In cleaning out my son’s toys and drawers, as we do every time the seasons change, I had a difficult time bringing myself to toss the rocket ships, monkeys, dinosaurs, and cartoon Santas that adorn the fitted toddler jammies. They’re not just strings of cloth that are comfy for sleeping. The mornings of watching Curious George and eating bananas on the couch and “slumber parties” where we eat popcorn and Goodnight Moon 3 times before bed are seared into these threads.

I held onto the tattered jammies for just a minute, allowed myself to reminisce, and then carefully placed them in nice shopping bags we’d collected. I made it a ceremony to take the bag to the trash, for if I brought myself to let go of the old, physically and energetically, it had to be with honor.

Hanging on to too many of both my son and my daughter’s things felt crowded and stuck in who they were in the past. The willingness to let go of their physical things, creates space and room on an emotional and spiritual level to love who they are today.

2)  We instinctively make the best decision we can with the information we have at any given moment.

This ritual of cleaning out my children’s things brings up so much for me. In the act of shedding, I analyze my performance as a mother: am I putting them in the right school? Am I feeding them the right things? Am I letting them watch the iPad for too long? And at times, the ever-so-thick, heaviness of Mama Guilt creeps her way into my thoughts the way all of the things that have collected have crept their way into piles of clutter. We all know it way too well.  Mama Guilt is cunning and can somehow find any reason to appear.

For me, the guilt morphs into a constant question of jumping into work full-time after undergoing treatment for cancer. Sometimes I say to myself, “They’ve been through so much, how can I leave them all day?” When in reality, my intuition tells me, it’s all in my head. They knew mama was ill, but I was present and enjoyed them while I was on medical leave from work. Since then, not much has changed for them and they still love me.

Regardless of whether we, as mothers, decide to stay at home or to go to work, we instinctively make the best decision we can with the information we have at any given moment. I find that the challenge is being present during the time we do have with our children that is most difficult. The relationship that is being cultivated between mother and child while you are “doing”- every bath, load of laundry, packed diaper bag, prepared lunch, made-from-scratch dinner, and heck, even taken-out-of-the-bag dinner- is what they will carry with them forever.

3)  Children are highly sensitive to the energy around them. There is an energy transfer that occurs so fluidly between you and your child that even when mama is not speaking, they know how you feel and vice versa. I have this with both of my living children and I also feel this with my first daughter, who passed in my womb, as a full-term baby. This space, like an invisible cord, is sacred and all mothers innately know how to protect it.

Being a mother is one of the greatest acts of balance. It’s letting go while staying anchored in our innate loving strength.

So the next time you’re feeling graspy or guilty, as difficult as it is, let go, come into the present moment of who your child is today and experience fully through your little one(s) all that you’ve been given. Remember all that you give your child(ren), for that love is the very definition of feminine divine.

What are your favorite qualities that your child(ren) have?  How has being a cancer mom changed you?  What lessons have you learned through becoming a cancer mom?

Let the world know your love for them in the comments section below!

Welcome Leah S!

Lacuna Loft is excited to continue introducing some guest bloggers!  These great folks represent a variety of perspectives on the myriad of topics covered here at Lacuna Loft.  Before everyone starts really getting into the nitty-gritty of all they have to say, we wanted to introduce them a bit.  Without further ado, here is Leah!

—

Hello, I’m Leah.

By age 29, I’ve had the strong cocktail of emotions that only cancer survivors know. Being diagnosed with Stage IV Hodgkin Lymphoma left me changed forever. For me, this change was a much needed massive internal healing. Marcus Aurelius was right when he said “everything that arises in life is the right material for your growth and the growth of those around you.”

On a physical level, I healed by combining conventional treatment and trying every holistic healing method possible (yoga is my drug of choice : ). But perhaps the greater meaning of The Cancer Experience is that I sought and found healing at the soul level.

Tell any of us “you have cancer,” and I will bet my life that we can all answer with “and courage and resilience, too, doctor.”

We can all use ancient principles as a roadmap to create our own healing programs. Cancer is complex, and so are we, but our bodies have the innate ability to know what to do to heal. The world of self-love, nurture, and care for the soul is delicious and (literally) divine. This is always available to you, whatever your stage or cancer. Although not everyone can find a cure for their dis-ease, everyone can find healing.  All you need is a guide to get there, and that’s what I do. You can learn more about me here.

So one part of me is definitely all-business, but when I take that hat off, I am a mama, wife, and yoga teacher.

When I’m not listening to the Frozen soundtrack for the 15th time, or on the lake with my family, you can find me on my mat, or enjoying closet dork activities such as reading, or writing. I don’t like wearing bras and I enjoy cheese, coffee, and marathons … of Downton Abbey (heck no, I don’t run! I rebound. And lay in savasana: ) These guilty pleasures are sometimes all at the same time after my cubs fall asleep.

I live life as though it is rigged in my favor. Because it is.

Embroidered Pictures DIY

Embroidered pictures look like the perfect DIY for young adult cancer survivors (patients, caregivers, you name it!).  When I was going through cancer treatments, I had no idea that awesome, simple, and calm DIY projects even existed.  (I think I was living under a rock?)  🙂  This embroidered pictures DIY has been showing up in a few of the blogs that I frequent and it looks like the perfect, fun project for a young adult survivor to me!

This cool looking DIY involves actually adding embroidered embellishments to pictures and postcards!   Talk about a neat and creative way to spice up some of the pictures in your home or postcards from places you’ve visited!  The process is super straight forward and I’ve seen the project done multiple ways now.  Etsy has an article where they explain how to embroider pictures or postcards and A Beautiful Mess has a great tutorial as well.  The Glamorous Housewife explains how to iron pictures onto fabric and embroider from there.  Get the kids together and go to town!

If you try this project (or any other here on Lacuna Loft) let us know!  We’d love to hear from you!

image via

A Story Your Way Kickstarter Campaign

[spb_single_image image=”11351″ image_size=”full” frame=”noframe” full_width=”no” lightbox=”yes” image_link=”https://www.kickstarter.com/projects/208577055/a-story-your-way” link_target=”_blank” width=”1/1″ el_position=”first last”] [spb_text_block pb_margin_bottom=”no” pb_border_bottom=”no” width=”1/1″ el_position=”first last”]

When young adults with young families are affected by cancer, children become a part of a complicated conversation revolving around difficult topics like wellness, cancer treatments, and quality of life.  Family schedules adapt to meet the need of the parental cancer patient, and day-to-day life changes for everyone involved.  Bringing children into this conversation is a complex task.  With children growing up in more diverse households, it is time that books specializing in explaining a parent’s cancer diagnosis to children mimic this trend.  A Story Your Way kickstarter campaign is seeking to change all of this.

NovaCarta, a non-profit based out of Switzerland, has set about tackling how best to explain to children what cancer means and how their family will be affected.  The association’s maiden project, A Story Your Way, allows families to create a book reflecting their exact situation, including cancer type and family structure.  These wonderful and adaptable books are created directly on NovaCarta’s website and sent straight to the family.  The family selects a number of parameters including cancer type, family structure, primary language spoken at home, illustrator choice (there are 3 different styles to choose from), and treatment plan.  In this way, single parent households, same-sex couples, and heterosexual couples can all have a book representing their family properly.  The family’s book can explain their own cancer story to best present the topic to children.

The books will be initially available in English, French, German, and Italian with later versions offering even more language options.  Later versions of this project will also be adapted for older children dealing with a parental cancer, dealing with a sibling’s cancer, and other illnesses but first, NovaCarta needs your help!  Funding for the project, A Story Your Way, is currently underway on kickstarter!  To find out more about the association, you can visit their website here.  If you are interested in helping fund this fantastic project, you can visit their kickstarter campaign here.

a599b13632343d5da6e0c8ccdbf1bf62_large

Here is more information about the project, straight from NovaCarta…

Explaining illness and its consequences to children is often a difficult and complex endeavour. A simple approach rarely reassures a child. It is therefore important to thematize the situation, the new daily routine and the specific changes the patient will go through. Studies done over the past 20 years show the importance, for children’s well being, to include them in open discussions concerning a parent’s illness (see bibliography). These studies explain that parents often find themselves lacking the appropriate means to have such discussions.

The importance of openly communicating about a parental cancer with children is imperative for their well being. Children who receive clear information throughout the period of a parent’s illness are less anxious than those that do not. For certain illnesses, like breast cancer for example, dedicated books exist to treat the subject matter with kids. However, these books focus on one specific case and moreover reflect a standard family structure. However, the heterosexual married couple with kids reflects an outdated family configuration.

We know that in the United-States, 24 % of cancer patients have dependent children (the number goes as high as 33 % in the case of breast cancer).

Some extra statistics on family :

– 1.9 million single parent households in the UK in 2013 http://www.ons.gov.uk/ons/rel/family-demography/families-and-households/2013/stb-families.html?format=print

– 28 % of children in the US live with one parent. https://www.census.gov/prod/2013pubs/p20-570.pdf pg.23

– 16.4 % of same sex couples have children (idem pg.24)

We can see that today children are growing up in families of many different configurations. Now, while these families may face discrimination in certain aspects of their lives, cancer doesn’t discriminate and can unfortunately affect their lives. Our book can be adapted to all family structures and cancer types, so families that have as of yet not been represented in this type of literature can get a book they relate to.

Novacarta will use the ease of print on demand technology to create individualised books. By preparing a multitude of scenarios covering the problematic involved in cancer, Novacarta will select the appropriate ones for each patient, thus providing them with a story that best coincides with their specific situation.

A semi-automatic work flow will print the book, on demand, for the patient and then delivered by mail.

 

Bibliography

Barnes, J., Kroll, L., Burke, O., Lee, J., Jones, A., Stein, A. (2000). Qualitative interview study of communication between parents and children about maternal breast cancer. BMJ, volume 321, 479-482.

Billhult, A., Segesten, K. (2003). Strength of motherhood : nonrecurrent breast cancer as experienced by mothers with dependent children. Scand J Caring Sci, 17, 122-128

Forrest, G., Plumb, C., Ziebland, S., Stein, A. (2006). Breast cancer in the family – children’s perspective of their mother’s cancer and its initial treatment : qualitative study. BMJ Online First (bmj.com). DOI:10.1136/bmj.38793.567801.AE

Keeley, D. (2000). (2000). Telling children about a parent’s cancer – parent’s want help but don’t get it. BMJ, volume 321, 462.

Kennedy, V.L., Lloyd-Williams, M. (9 janvier 2009). How children cope when a parent has advanced cancer. Wiley InterScience (www.interscience.wiliey.com). DOI : 10.1002/pon.1455

Kroll, L., Barnes, J., Jones, A., Stein, A. (1998). Cancer in parents : telling children. BMJ, volume 316,  880.

Muriel, A.C., Rauch, P.K. (2003). Suggestions for Patients on How to Talk with Children About a Parent’s Cancer.

Rauch. P.K, Muriel. A.c. (2004). The importance of parenting concerns among patients with cancer. Criticial Reviews in Oncology Hematology, 49, 37-42.

[/spb_text_block]

Decisions And Hope

What’s for dinner?

It’s one of my least favorite questions. I have to think about what we’ve had recently, what everyone likes/dislikes, and make a decision. Every single day. It never fails. At some point today, I will get a call, or a text that says, “What’s for dinner?”

I’m not a big fan of making decisions, mostly because change inevitably follows whatever decision is made. Good change, bad change, scary change, unknown change… it’s something I’m not very comfortable with. Even if things aren’t good, if they stay the same, at least I know what to expect.

Since Bastian’s diagnosis, I have had to make a lot of really tough decisions. Decisions about which chemo drugs to give him, weighing out pros and cons of the side effects vs the “hope” of disease improvement. Decisions about whether or not to continue on with a drug trial, despite how sick it’s making him, because we’ve slowed the cancer growth. Decisions about not letting him go away to his youth group retreat last year, for fear of him being that far away while he wasn’t feeling very good. Most recently, it was the decision to take him off of the chemo he’s been taking for the past year, because he’s having some bleeding and kidney issues. I had to decide on whether to continue to poison him, with horrible side effects that could cause permanent damage, or stop the meds and not be doing anything to stop the spread of his cancer.

That’s a far cry from, “What’s for dinner?”

We’ve known for a long time that the treatments we are doing now are to maximize his quality of life. Our goal for the past year and a half has been to keep things at bay for as long as possible, on drug studies that have the least amount of side effects. As of right now, there isn’t another study for him to start. Even bigger decisions are coming up very soon, and I am not looking forward to being the one to make them.

What about hope?

People ask me if I’ve just given up, if I’ve lost all hope.  That’s a tough question to answer, mostly because my beliefs are different than most other people. When most people speak of hope, they make reference to God, and miracles. Of course I hope that we find that “miracle”, that the docs will look at the scans and say, “It’s gone!”, but I have to remain grounded in reality so that I have the ability to face the things that are already here. The hope I have is that my son will know love, that he will know peace, for as long as possible. My hope is that he knows how special and awesome and important he is. My hope is that we will all make it through this, no matter what the outcome, and gain strength together. My hope is that we will all become better people having been on this journey.

I have hope. I see it in Bastian’s face every time he smiles. Despite everything going on, he remains positive and upbeat. That’s hope.

Waiting

With a cancer diagnosis, you get bombarded with a ton of information. Disease info, hospital info, oncologist info, treatment plan info, clinical study info, drug side effect info, etc. One of the things they don’t really spell out in all that info is how at least half of the treatment plan is waiting. Waiting for your appointment, waiting for the doc to come in, waiting for blood counts to see if chemo can start, waiting for the chemo to arrive, waiting for your blood to be typed, waiting for the blood transfusion to arrive, waiting for test results, waiting to see if the drugs are working… waiting for answers.

In the midst of all that waiting leaves a lot of time. Finding things to do with that time is very important for me, because if I’m not staying occupied, my mind can wander to some fearful places. I’ve learned over the past 2 years to never expect to just be “in and out” when it comes to a clinic visit or a chemo appointment. Something always seems to come up that has us waiting, so we show up prepared. Bastian brings his iPad, or his Kindle, or a movie to watch. I bring my laptop and catch up on work, or read on my Kindle. I keep a suitcase packed in my trunk with clothes for the both of us, just in case a short clinic trip ends up becoming an overnight stay in the hospital for one reason or another.

Because I know I’m going to be waiting a lot, there are things that I always make sure we have when heading to the hospital. Besides clothes, below is my personal checklist:

  • Phones, Kindles, Ipad, Laptop
  • Chargers for all of the above
  • Cash/change for the vending machines or cafeteria
  • Paper and pen/pencil
  • Dry erase markers – to decorate Bastian’s windows should the need arise
  • Chewing gum/candy
  • Bastian’s next 2 med doses (even if I’m sure we’ll be home in time)

With Bastian being a juvenile patient, most hospitals have some kind of Child Life program with volunteers who come by to see if he needs anything, or wants to participate in arts and crafts, music, or various other activities. However, a lot of the time, he feels crummy and just doesn’t want to be bothered with anyone else, especially when the docs and nurses are in and out all the time. So, we come prepared to entertain ourselves the best we can, while we wait.

The Family Diagnosis

When someone is diagnosed with cancer, the ripple effect of that diagnosis goes a long way. I didn’t think much past Bastian when we got the news, because the cancer was his, his life was at stake, his body was under attack. I had yet to find out the impact this disease was going to have on the rest of the family.

The day we drove to St. Louis, we thought we were just going to have the docs rule out leukemia. What was intended to be a day trip to the clinic ended up being a week-long stay, full of tests and biopsies and the placement of Bastian’s first central line. His cancer was given a name, and we were given a treatment plan, which included weeks of in-patient chemo, and surgeries, all to prepare for a bone marrow transplant, which was going to require him to stay at least a month in the hospital. A hospital that was 3 hours away from home. Fortunately, my parents lived less than 20 minutes from the hospital, so we had family and a place to stay nearby when we were there. Bastian and I were covered.

But what about everyone else?

My family, my job, my friends… They all had to take a back seat to what was going on. The job and friends part was easy; everyone understood and we were given nothing but support. However, the family part was not so simple. Sure, Gabbi and Maddux understood that their brother was very sick and needed help. But how well does a 15 and 7 year old really take their mother being away from them 2 weeks out of the month? The stress and strain to keep balance in an unbalanced situation became almost unbearable. I am grateful for my partner, and my friends and family for stepping up to fill my shoes while I was away so much during Bastian’s first year of treatment. I spent at least 7 months of that year in a hospital room with Bastian. Seven months that I was not there to see how everyone was really doing, how they were coping with the HUGE changes our family was going through.

It’s now been 29 months since Bastian’s diagnosis. We are on our 4th hospital. He has been through tons of chemo, a bone marrow transplant, 2 different kinds of radiation treatment in 2 different hospitals, a second line placement (due to his first getting infected), numerous tests and scans, and just recently had his 15th bilateral bone marrow biopsy (HUGE needle shoved into his hip bones). And all we’ve managed to do is keep his cancer from spreading. Haven’t improved it any, but at least it’s not getting worse. Prognosis is still the same for him.

And the rest of the family?

I’m seeing a counselor twice a month and have been put on anxiety medication. Maddux is seeing a counselor once a month to help him learn how to process his anger and sadness. Gabbi was just recently hospitalized due to depression and drug abuse, largely due to her not knowing how to deal with the feelings that come with a little brother with a terminal illness. My relationship with my partner has been very rocky lately, and probably also largely influenced by the stress of the reality our family has been thrown into. Bastian’s cancer is not just his. It’s a frightening journey that we’ve all been unfairly put on. His diagnosis belongs to all of us, because it touches all of us in our own ways. Knowing that we all aren’t going to make it out of this journey alive is a hard pill to swallow. It’s a pill that will choke us all if left unchecked.

I am desperately trying to keep my family together, because I know how much we need each other right now. We are all hanging on by a thread, but at least we are still hanging on together.

Cancer Mom 101

If someone would have told me that once I hit my early 30’s I would be balancing a household, 3 children, a relationship, a job, and a social life, all while being the primary caregiver for a teenager with stage 4 cancer, I would have told them there is no way that’s possible. I mean, I was having a tough enough time keeping the first five things going way before my son got his cancer diagnosis.

When I heard those three words for the first time, the whole world stopped moving. “There’s a mass.” My dad raised me to approach problems as practically as possible, so I asked for a plan right away.

A mass? What does that mean?

Where is it? How big is it? Can we take it out?

When do we start? What happens next? How long do we have to do this?

What’s the prognosis?

Tough questions, with even tougher answers.

In those early days, I did my best to stay away from internet search engines and stick to the information and websites that the doctors directed me to. The facts were scary enough without adding the terrors of all the worst case scenarios that the internet can give you. I learned all I could about Neuroblastoma and the drugs we were planning on giving to Sebastian to try and fight it. I learned about blood counts and what an ANC is. I learned about transfusions and Bastian learned his blood type (“I’m A+ so I’m better than you!”) We all learned to keep little garbage cans stashed everywhere for when the bathroom was too far away. Hand sanitizer became a way of life.

Sebastian’s prognosis is poor. Due to his lack of response to treatment so far, he has a less than 5% chance of surviving this disease. It’s hard, being the parent of a young man facing the reality of a terminal illness. This is a time when he should be worrying about impressing the girls/guys, not being concerned about how because of chemo, his hair is so different than everyone else’s. Flushing his central line is part of his daily routine, and he’s been handling his own flushes since he was 11. “It’s not fair” comes up on an almost daily basis, but we do our best to not think too far ahead. Sebastian still goes to school most days, he has sleepovers with his friends, and we have Harry Potter marathons and stay up until 2am. He still has chores, cleans his room, and gets in trouble for not doing the dishes at least once a week.

I am grateful for the powers of social media, as that is the outlet we use for getting information to our friends and families. Trying to do things by phone those early days was just too emotional of a task. I ended up sobbing by the end of each phone call. We have a Facebook page that we update regularly. No secrets, no surprises. It releases the huge burden of always having to answer the question, “So, how’s Sebastian doing?” Most people already know what’s going on, so when we see them, we don’t have to go through explaining recent tests findings, or what side effects he’s experiencing. We can just talk about what fun thing we did last weekend, or what movie we’re gonna watch tonight.

For now, life continues on. And that’s all I can ask for. We will deal with tomorrow when it gets here.