As with any mention of my belly, I am compelled to immediately flip through 100 photos of Elsa, inside. Safe and warm. And look! She and Stella were besties back then too!

Our daily routine and activities have not changed too radically since maintenance started. Throughout treatment, we’ve stayed as busy as possible and tried not to be too restrictive when her ANC is over 200. We’re having more play dates now, but our usual rounds of the library, grocery store, parks, etc. remain the same.

What has changed though is our daily dosage of enjoyment. Life with a two-year old is challenging, but feels surprisingly effortless now. Anyone who has seen me over the last two weeks knows that I can’t stop exclaiming, “She feels so good now! She must have felt so awful for the past 9 months!” She’s like a totally different kid now. Smiles in the morning instead of screaming. Running around the house instead of clinging in my arms. Stripping her clothes off in the park instead of, again, clinging to my body. Happy and chatty in the grocery cart at the store instead of yelling and impatient (or at least now the yelling is happy yelling). When we are out and about, I feel this incredible sense of breezy relief.

I have posted a bunch of pictures of our new, happier life over at the 366 Project as well. How’s THAT for a more pleasant update?

I think that anyone who blogs about their children/family goes through this crisis eventually. Am I doing the right thing by sharing our life so openly? Am I putting my family at risk? Is this safe? Why am I writing here? When Elsa is grown-up enough to read this stuff, will she find her mother’s candor horrifying? Will she feel exploited? Will she feel that I invaded her privacy without her consent? I thought about these questions before, but some recent events have got me spiraling again – wondering if I’m doing the right thing.

I’ve mentioned here before, but I’ve been semi-active on the Leukemia & Lymphoma Society discussion boards. Soon after Elsa was diagnosed, while I was furiously googling, “My kid has cancer,” I stumbled on the discussion boards and they were such a relief. Families from all over the world, discussing all the things that my non-cancer friends couldn’t help me with: vincristine-related neuropathy, neurontin dosage, morphine, clinical trials, ER procedures, what to pack for the hospital, etc. It was a wealth of information that I desperately needed. My first post was something to the effect of “My toddler has leukemia and won’t stop screaming – Help!” I got a few emails from other parents, offering support, condolences, and hope. One mom, in particular, sent me some valuable information regarding pain control and a link to her Caring Bridge site, where she wrote about the last 2.5 years of her daughter’s treatment. Those pictures of Emma Grace – off treatment, healthy, vibrant, and with beautiful shoulder-length hair (!), were like crack to me. I would sit there at my screen, after my steroided-out, limping, screaming toddler had finally succumbed to sleep – I would sit there and stare at the little slide-show of Emma Grace’s pictures. I would stare longer than you are supposed to stare at a stranger’s child and cry and try and imagine the unfathomable possibility that Elsa might look like that some day. I would force John to come over to the computer and cry, “Look! Look! That’s Emma Grace! She’s better! Elsa could look like that some day!”

Emma Grace’s mom and another mother of a child with ALL have become my friends through the internet. Certainly not friends in the traditional sense, especially since we’ve never met, but people who I hold in my thoughts and with whom I correspond – sometimes about cancer and sometimes not. I have stayed active enough on the boards too, responding to parents’ questions with whatever knowledge I’ve gained over the past 9 months. Occasionally, I still ask questions myself and I always receive timely, thoughtful replies. Recently, though, there was an incident on the discussion boards that made me reconsider the time I’ve spent there. I won’t delve too deeply into the story, because it’s pretty long and very sad, but I’ll try to give a brief overview.

One of the mothers on the boards has been posting since before I even joined up back in July. She had a really tragic story and her daughter passed away from ALL early this year, after a horrific fight with many, many complications. Soon after the child’s death, the mother gave birth to premature twins, one of which had a heart defect requiring surgery. Again, very soon after, this same mother was diagnosed with advanced breast cancer. Each step of the way, it all seemed too much to bear. Everyone on the boards would respond with something to the effect of “We are praying for you. We don’t know why your family would be stricken with such misfortune.” She never asked for money – only prayers and support.

Then, just a few weeks ago, someone joined the boards and outed this woman as an alleged phony. The new board member claimed that the entire story was fictitious and she had some proof via other discussion boards where the unfortunate mother had posted with inconsistencies in her story. Everyone on the LLS Boards seemed to come to the same conclusion: If this woman’s story is true, then it is very tragic. If this woman’s story is fictitious then, thank goodness there is not actually a family carrying such burdens. Finally, everyone seemed to agree that, if she really made up the story, her life is almost equally as sad. Either way, sympathy seemed in order.

Initially, I was somewhat bemused by the whole situation – almost like it was some complex soap opera I was watching. As days went by, I couldn’t shake the story though. I kept returning to the boards, hoping this woman would return and explain herself – explain if any of it was true. Many who have heard this story from me have pointed out that, if she is actually writing fake stories, she could be back already, as a new parent with a new story. I’ve started to feel like the internet is this dark shadowland full of phony stories. And then I remember that my daughter is out there in that shadowland. Photos of her face and her body are available to the crazed, sinister masses. Some of our darkest moments as a family and many of our joys – they are all available and unfiltered.

Usually, from deep inside my anxiety chasm, where I’m sure I’ve permanently sullied my child via internet, I almost always come back to Emma Grace. I see myself sitting at my computer. On the couch, lies our sweet baby, bruised and swollen, angry and pained, implanted with medical devices under her skin, but given a good, fighting prognosis. My child has a good prognosis. My child has cancer. My child has cancer. That’s the name of the discussion board, by the way. My Child Has Cancer. I can put myself back there so easily and I can see those pictures of Emma Grace and I can remember how ravenous I was to read her story. Tell me how the story goes and tell me how it ends, Emma Grace. Tell me about surviving steroids and tell me about how much you love wearing pigtails now. Tell me about how you no longer take narcotic pain medicine and how you are learning how to read and write. Tell me how your teacher praises you for being such a delightful, normal kid, even after nearly three years of cancer treatment. Tell me all about it all and I want details.

I haven’t come to a conclusion about all of this yet. I can’t say that, Yes, I feel 100% confident that I’m doing the right thing by my child. I actually never feel sure about anything, to be honest. Certainly though, I am doing the best that I can. I’m writing and sharing all of this because I really do hope that other parents can sit down, a week after their child’s diagnosis and see Elsa. I want them to see every day of our journey, as much as I want to remember it as well. I want them to see that, in the morning the sun came up and, in the evening, the sun dipped back down and we are still here, having survived the interim. I stay on the LLS boards for much of the same reason. I ache to pay back some of the kindness that we have been shown. I long for this whole shebang (yeah, that’s right, I called cancer a shebang) to have meant something positive – whatever form that may take. If it doesn’t do us some good, then it was suffering for the sake of misery and that seems like an awful lesson to teach my child. I want to show her that we kept trying. Every day, we kept trying and, mixed amongst the grief and fear, we squeezed some fun out too.

Nor can I plead pure altruism here. My writing is very, very selfish, I can assure you. I can hardly understand a word of what goes on in my own head until I’ve written it down. As a child, when I would misbehave, I was always required to submit a formal apology, but I rarely uttered that apology out loud. 10 years old and, unprompted, I would sit myself down on the computer and write until I had myself truly convinced that, Yes, I’m sorry. Somewhere deep inside an 8 inch floppy disk at my father’s house, my apology letters are still paying penance.

My thoughts are jumbled and alarming in their seeming magnitude, until I’ve written them a beginning, middle, and end. I sit back and read and re-read until the whole mess sounds cohesive. Then and only then, as one of my cancer mom friends says, can I hang up my coat after a long day. Unfortunately for Elsa, her life is inextricably intertwined with mine for the near future and my quivering mass of thoughts orbits her as much as it does me.

This feels like it’s only a beginning of a discussion. I’ve really just asked the same question over and over again for 11 paragraphs. Is it OK to write here? Is it OK to feel compelled to bear one’s own soul to both friends and strangers, even if your child’s privacy gets in the way? I’m still asking.

I suppose that this is a feature of regular, non-cancer-life parenthood that is only magnified by our situation: Elsa was diagnosed with leukemia yesterday. Yesterday morning, I collapsed on the floor outside of the Operating Room and had to be scraped up and forced to walk slowly down the hallway as they cut her open. Then again, we have been doing this for years. Decades, even. My whole life, I have been a mom to a kid with cancer, even though she was diagnosed yesterday. Is someone studying this phenomenon?

Monday, we had our first clinic visit of Long-Term Maintenance. For leukemia parents, that is a pretty big deal. A sign that your kid has survived the initial half-year onslaught (for us, it was 8.5 months because of routine delays) and gets to pass “Go,” for another trip around the board. This new phase will last for the next 546 days (Thank you Countdown Clock for helping me to ever quantify the passage of time in my life). Her ANC was 1500ish, so she was cleared for her IV vincristine and spinal methotrexate. She also started a five-day course of steroids and a daily, oral chemotherapy called 6-MP. Only 546 more doses! Next week, we will start giving her weekly doses of oral methotrexate as well. Phew. The daily medication routine has gotten pretty epic.

Of all the things they do to her at clinic, including putting needles in her spine and chest wall, the only thing that she complains about is the numbing cream they put on her back, prior to the spinal tap. It’s the same cream she happily accepts on her port in the morning to prepare her for being accessed, but, for whatever reason, the cold cream on her back is an insult. I’m always amused that THAT is the worst part of the day:

Her spinal was scheduled for 2PM because of the slow-as-molasses (gosh, I love that phrase!) pace of the lab/pharmacy. By the time we get her counts back and her chemo prepared, the day has passed us by. Of course, we had our requisite hour spent sitting on the edge of the sink, playing in our “pool.” Long about 1PM, after 5 hours without any food/drink/nap, this is the only activity that keeps her (and subsequently, me) from totally losing her mind.

I’m obsessed with taking pictures of her with the reflection in the towel dispenser. Never gets old to me.

Despite having worked 30 hours in a row, John managed to make his way across the street in time for the spinal. John = good dad.

I also can’t get enough of the silly drunk faces she makes as she wakes up from her versed/ketamine dreams.

We also got some really excellent news about our randomization in the COG-AALL 0932 clinical trial. I’ll try to make this brief (I will probably fail) because it is wildly boring to anyone not actually going through this. Also, whatever I am spewing here is just my interpretation of what I have read. I’m far from an expert on this stuff, so if you are reading this because you are the parent of a kid with ALL, please check out some of the links I have posted (up there at the top) for any expert info.

The standard of care for pediatric ALL treatment varies somewhat depending on where you are treated. Some hospitals, like St. Judes and Boston Children’s (I think) and Children’s Hospital of Pennsylvania, have their own treatment protocols. For the most part, though, kids with ALL are treated with the standard COG (Children’s Oncology Group) protocol. For long-term maintenance, that standard of care includes once monthly steroid/vincristine pulses, once every three months spinal methotrexate, daily oral 6-MP and weekly oral methotrexate. The prognosis for these average-risk kids is somewhere over 85%. The treatment, though, is pretty toxic and a lot of kids end up with long-term neuropathy or other complications from the steroids/vincristine. So, we are enrolled in a huge clinical trial sponsored by the COG that is looking at trying to decrease the toxicity of treatment while still maintaining such high cure rates. From what I understand, a lot of European countries (Germany, especially) have found that children can get WAY less vincristine/steroids or NONE at all and still have equal EFS (event-free survival) rates. We have certainly seen short-term toxicity with Elsa, including neuropathy from the vincristine (for which she requires Neurontin daily) and a lot of pain/limping/awfullness from the steroids. Deep in my heart of hearts, I believe that this treatment is more toxic than necessary for these average-risk kids, so I am happy to have Elsa enrolled in this trial.

So what is our good news!? We were randomized to the arm of the clinical trial that administers the LEAST amount of chemotherapy: Arm C! She will still get the standard doses of all oral chemo and spinal chemo, but she will only be subjected to vincristine/steroids every THREE months. There is definitely room for some worry – I know that, perhaps you are thinking, “Is it OK to get LESS chemo?” Though we don’t know the answer for sure, there is definitely research saying, “Yes.” This clinical trial is based on quite a lot of research that says that, in Elsa’s particular risk category, it is safe to administer less vincristine/steroids. I think that I will always have twinges of doubt, wondering if, perhaps we should have dropped off study and gone with the standard of care. I wouldn’t be me if I didn’t have some twinges of doubt about something. Like I said though, I believe in this Arm of the protocol and, though the stakes are big (huge, in fact. MONUMENTAL, really), John and I agree that we are happy with our placement.

THREEEEEE MOOOOOONNNNNTTTTHHHS! Considering we have been on basically weekly IV chemo for the past 8.5 months, this is a huge, huge, huge change of pace for us. When they told us we didn’t have to come back for another two weeks (just to have her blood counts checked), I actually felt a little terrified. Two weeks without knowing her blood counts?! How will I know if it is safe to take her to the library!? To the grocery store? Once her counts stabilize, we will go down to monthly blood count checks: again, terrifying. All terror aside (because I wouldn’t be me if there wasn’t a little terror sprinkled on top), this is wonderful news and exactly what we had hoped for.

Now we just need to put our heads down and endure this steroid week – it’s shaping up to be unpleasant but a mere fraction of the steroid hell we’ve lived in the past. Our supplies of guacamole and goldfish are reinforced and I’m ready to run on just a couple of hours of sleep come Thursday-Saturday.

Maintenance Sequence Initiated!

I’ll start with facts and if that’s all I can muster, then at least the facts are there. We were discharged a week ago after five days inpatient. It was actually a pretty painless admission – as painless as spending five days cooped up in the hospital with a two-year-old can be. Since we’ve been home, Elsa has emerged again from the fog of this last chemo cycle (Interim Maintenance II) and she has been delightful. That’s the word I always use to describe her when the chemo has finally leached out of her body – and it’s totally accurate. Once again, she let’s us know that there is a sweet, funny, smart little girl in there – stifled by eight months of chemo and clinic and pain. She’s still my Elsa, so she will always be a bit on the ornery side. And she’s still TWO years old – so pack a little more ornery in there. But, delightful? Delightful is totally accurate.

See? Proof:

Oh! And another fact: We got some really great news on our clinic visit before last. I can’t believe it’s taken me so long to share this! Originally, I had always thought that the Maintenance phase of treatment would last two years from the day we started maintenance. I had calculated that we would be done April 2, 2014. Well, while Dr. Parikh was busying himself with spinal needles and sterile gloves and Jeannie was busy charting and double-checking chemo dosages, I mentioned that April 2014 off-treatment date. They both stopped for a moment and said, “No, No. She’s finished with treatment 2 years after the start of Interim Maintenance I. Didn’t we give you your off-treatment date?” Um. No!! Jeannie glanced at Elsa’s chart and handed us a little slip of paper:

October 10, 2013

October 10, 2013!!!!

October 10, 2013!!!!

That may seem like it’s still a long time away but it is seven months shorter than I had previously thought. Seven fewer spinal taps. Seven fewer IV chemos. Approximately 238 fewer chemo pills at home. This is a BIG deal! Our life (really, MY life, in particular), is very much on hold until Elsa finishes all this nonsense. Every time I try to think of anything happening in my future, whether it be a career move, going back to school, having another baby (what!?), I stop myself. Just the thought of another inpatient admission (surely, we will have another one before treatment is finished) and all my personal dreams go out the window. I can’t hold a steady job when I’m needed 24 hours a day to push an IV pole. It doesn’t make sense to spend money on the grad school that I so desperately crave. Can you imagine having a tiny infant to take care of (not to mention TWO children to breastfeed) while living on the 8th floor of our hospital?

Please, please, don’t interpret this as my ignorance to the fact that I am L-U-C-K-Y beyond measure to be able to stay home with Elsa. I know, every day, that I’m lucky to spend this time with her. That being said, I’ve got some ants in my pants (who says that?) to make a life plan that includes just a little bit more for me and my soul.

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I wrote most of all this yesterday (Sunday) but now it is Monday and I’ve got more news, however tedious it may be to hear about blood counts. We were scheduled to start maintenance today but Elsa’s counts were way too low. They sent us home to enjoy another week of chemo vacation. Thankfully, this doesn’t affect our OCTOBER 10, 2013 end date (every time I say that date in my head, it’s like I’m screaming). Just less chemo overall, and I’m pretty sure Elsa’s body is down with that plan. Her ANC is only 264, so we are back on house arrest. She needs to hit 750 before we can even think about maintenance. We spoke with another family at clinic whose little girl is now done with treatment and they confirmed that their daughter’s counts took three weeks of chemo vacation to recover enough to start maintenance. Dr. Parikh told me, “Nothing to worry about,” – so as much as I’d love to worry my ass off about it, I’m going to put some blinders on and take his advice.

There we go. Blog post done. Just a little less languishing on my part.

We are still inpatient. The big let down of the day was that we were sure we would be leaving today. Yesterday, her ANC struggled it’s way over 200 so we were just waiting for her to go 24 hours without a fever. This morning, she was happily still feverless when thy came to tell us that her ANC gave up its valiant effort and dropped back down to 106. Ugh. At this point in the cancer parenting game, I should know better than to get my hopes up over something as fickle as an ANC – but I did. So now we are stuck in our 8th floor sanctuary and she is scarily immunocompromised, but at least we’ve done this before. Goal of the rest of the admission: not to acquire any of the scary hospital bugs that are my invisible, constant tormentors.Stay away Staph. F-you Pseudomonas. Don’t even think of it C-diff!

This is what our room looks like to normal people:

This is what our room, horrifyingly, looks like to me. Each yellow tag is a killer infection just waiting to jump from someone’s hands to Elsa’s port.

Needless to say, it will be such a relief to get back into our own space with our own safe, benign germies.

John and I don’t even have to discuss it anymore- its just a given that we will handle her care in shifts. I do overnights and mornings (and sometimes afternoons since its a weekday and he has to work). John does afternoons and evenings while I go and do absurd things like have my feet fondled.

*Pedicure interlude: my Korean friend just happily informed me that my feet are too rough and he did “the best he could.” I told him that I don’t need to look fancy and his best is good enough.

Thank you to everyone who has checked in with us recently. I usually try to keep up with comments on the blog and reply to them but the wireless at the hospital is unreliable and makes WordPress impossible to use. Please know that we read them all and they are all little moments of joy in our otherwise somewhat tedious hospital life.

One fun tidbit of Elsa news: her speech has taken some sort of radical turn and she is chatting with us up a storm! I don’t think I’ve mentioned it often here but Elsa’s speech has been delayed- probably a combo of the whole cancer thing and two parents who always just gave her everything she wanted without making her actually ask. She has had early childhood intervention through our state with a therapist who comes and works with us very week on getting her talking. Just this hospital admission, she has started to string words together! Her first sentence? As screamed in my face during one of her many arduous, clumsy trips to the bathroom with me since I can’t leave her alone when she is attached to her IV pole:

“Mama! Pee pee lellow! Lellow pee pee mama! LELLO!”

Yes sweet pea. Yes, the pee pee is yellow. Very accurate. Thank you.

On Monday, Dr. Parikh told us that Elsa has a double ear infection but that it looked like it was resolving. Guess not. We came in with a fever of 102.3 to have her ANC checked. If it’s under 500, we’ll be admitted. Thankfully though, it is still the ear infection! He says her ears look awful, so at least we know the source of the infection. Most admissions, there is some question in the back of my mind that maybe, just maybe, it’s a port infection (the worst possible thing). We’ll take double ear infections any day!

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It’s now 7:00 and we are snuggled into our new, fancy hotel room here at Chez CCMC. ANC was 160 so we can plan to be here a couple of days, at least. They think her counts will probably drop lower before they rise over the magical 200 that sets us free.

As I sat down to write this, I have to say that I was bizzarely, deliriously happy when we arrived on the floor. The misery of our last hospital admission has taught us to be thankful [very, very thankful] to NOT be on isolation and sick ourselves. I’m not totally sure how we survived that last admission in one piece. Actually, you know what? Those kinds of, “I dont know how we did it” statements are really just bullshit because if cancer teaches you something (well, it teaches you many things), it teaches you that you WILL handle whatever it is that barrels in your direction. Still, our last admission was surely our worst thus far.

Now though, we have a hundred things to be happy about! This last week has been rough because she has been miserable fighting the ear infection and I have been so on edge, just waiting for this admission. I was so tired of obsessively checking her temperature, waiting for the fever. It was almost a relief to see the 102 and know that, finally, I could stop anticipating with dread. Plus, now that we are here, they gave us the biggest, most comfortable room on the floor that has a set of double doors to block out the noise from the nurse’s station. We are not on isolation and are free to roam the halls and use the family kitchen and playroom. Even the IV pole is great! They gave us one that has a little platform attached to it where I can rest my coffee in the morning as we make our morning rounds of the floor. Luxury! This is all so luxurious!

Ah see. . . Perhaps I should not have sat down to write. As I write, familiar feelings are creeping in to visit. Feelings like, “I shouldn’t write that things are going well. That’s such a risky move,” and “Her counts are so low that NOW, she is at risk for a port infection. Tomorrow could bring disaster.” “Don’t write anything down so that your future self doesn’t look back and wonder at your naivete.”

I’m sure I’ve said something like this before, but I sometimes feel like I’m in an empty, padded cell, yelling and batting invisible, threatening shadows. I plead, “I know it could get worse! I know! Please, please, please let THIS be the worst part.” I think I’ve gotten pretty good at snuffing these feelings out – but when I’m least expecting it, and especially when we are inpatient, my mind always wanders to the same place. I see her up in the ICU with a thousand clear tubes shuttling fluids and air in and out of her tiny body. The screaming in my head is deafening. I’m not totally sure how to snuff that out completely.

Oh gosh. Enough! We have an IV pole with a little stand attached and, in the morning, I will rest my coffee there as we walk the halls. Right? Yes.

Our day in the usual 1,000 pictures:

Dark-circled little worrywart:

All parties were asked to “look silly.” Grammy was the only one who took direction.

Worrywart gets examined – though I’m proud to say she is generally pretty easy-going with this stuff as long as we follow a couple of her rules.

If I were to look back in my posts, I think I could find this exact same photo, wearing the exact same jammies!

For a little change of pace, we ventured down the hall to the 8th floor waiting room to eat some goldfish with Baby Dollie (really original name, I know).

Trick of the trade: Whenever admitted to the hospital, BRING PILLOWS! As many as you can stand to carry.

Goodnight!

So Thursday was relatively easy, but, unfortunately, Saturday morning, at about 3AM, gifted us a fever of 102.2 and a trip to the ER. As an ER nurse myself, I find it especially difficult to bring my kid in for just a fever. I have seen hundreds of patients who bring their kids to the ER for a simple fever and the question [that I only ask in my own head] is, “WHY!?” “Why on earth would you bring your kid in for just a fever!? Keep them home. Tylenol. Hydrate. Snuggles. Done!” But to the ER we go, anytime her temperature is above 100.4. Doctor’s orders.

I was thankful that I didn’t see this fever coming though. Some nights, she feels warm to me before bed, so I spend the entire night tossing and turning, repeatedly checking her temperature and trying to refocus on some meditative tricks I have that distract me from my anxiety. I go through the alphabet from A-Z, thinking of words in Spanish. I go through the alphabet A-Z, naming animals. The anxiety I have about the possibility of an ER trip is killer. The actual ER trip, itself, is usually not as bad as the anticipatory anxiety.

Now for some other things for which we are thankful. Throughout this whole BS cancer thing, John and I have found it immensely helpful to constantly – and outloud – acknowledge the things that make us lucky. See, I even made a chart about it: Elsa’s Leukemia FAQ. So first off, whenever we have to go to the ER, we call the on-call oncologist and they make sure that the ER knows we are coming. The minute we walk in the door, they see Elsa’s little bald head and we get VIP treatment: ushered straight to a room, avoiding all the other kids and their germs. A nurse is in our room within minutes and Elsa’s blood is sent to the lab within 10 minutes of our arrival. So far, Elsa has never made a peep about being accessed in the ER – even though it is not her beloved Jeannie down in the ER.

Since CT Children’s Medical is a pediatric hospital, we don’t have to worry about all that scary stuff that goes along with a regular ER: drunks, trauma, cardiac arrests, etc. As an ER nurse myself, when I see a pediatric patient coming in, I run for the hills, hoping another nurse will get the patient. I am terrified of pediatrics. My tagline at work is always, “I’ll deal with all your drunks and change all your adult diapers if you will take my one pediatric patient.” Their tiny bodies, tiny medication doses, and terrified parents have always intimidated the hell out of me. Granted, since Elsa got sick, my feelings about pediatrics have been changing, but historically, I avoid sick kids. At CCMC, we never have to worry about getting a nurse or doctor who secretly hates pediatrics (like me!). Everyone there specializes in the wee ones and that makes a WORLD of difference. They actually like being around sick kids – go figure.

So this particular trip, we were there for about 4 hours total for a blood draw, a dose of IV antibiotics, and instructions to come back in 24 hours if she is still febrile. Her ANC was 1900 (it is elevated because she is clearly fighting off something) and we don’t have to stay unless she is febrile with an ANC less than 500. So far, we have managed to stay home and she does seem to be feeling better.

And now for the requisite pictures from our Thursday clinic visit:

Hiding in the curtains:

Getting blood drawn is so much fun!

Playing in the sink is serious business:

And finally, my picture of the day over at the 366 project was a photo of her spinal tap. It’s not so gruesome, but there is a needle in the picture, which might make some a bit woozy. I like the picture, anyway. Day 68/366: Where Cancer Cells Hide

I don’t cry during spinal taps anymore (you’d think I’m the one getting a needle in my back!). In fact, according to my records (I love, love having records – in fact, it’s becoming an obsession), I stopped crying sometime back in September. Again, according to my voluminous records, this is her 11th spinal tap.

Hopefully, by 3:00 tomorrow, I will be able to partially relax some of the muscles in my back and shoulders and can slowly start to begin the mental decompression process. I want a decompression chamber like the deep-sea divers get when they surface too quickly. Somebody immediately start a non-profit, “Decompression Chambers for Cancer Moms.” Find me tomorrow by 5pm. Bring a masseuse. Also, for a girl who wears jeans and a white t-shirt ever day, I’m weirdly partial to pedicures. And margaritas. . .

I felt like, perhaps, I had more to say about all of this. I’m sorry the blog has been running pretty dry these days. This whole cancer thing is getting tiresome for all parties involved.

1. We are busy! Elsa’s ANC has been high enough that we are exploring the world with very few restrictions right now. Aside from having clinic/chemo every 10 days this cycle, and going through 12 bottles of purell each week, we are living a normal, fun life.

2. I am busy Losing to Win! I joined a totally absurd (in a good way) weight loss program at the YMCA (Lose to Win!) with weekly personal training / weigh-ins and it has been just enough motivation to kick my butt into a healthier gear. I’m spending a lot more time thinking about/planning the foods that we eat and I’m making time for work-outs, even if it means peeling off some of the velcro that sticks Elsa to my body most of the time. Elsa hasn’t had much of a problem with the de-sticking process; the better she feels, the less she needs me so physically. Everyone involved feels better, I think. I’m packing in as much self-care as I can, while the waters in our life are calm. John, too, is trying to get to the YMCA more frequently and we are taking turns taking alone time for ourselves. Next phase of the re-building process should probably be that John and I take time for ourselves, as a couple. Slowly, slowly, we’re working on it.

3. Perhaps some of you may have noticed a new tab across the top of the blog that says “366 project.” I joined up with a Facebook group where we are all aiming to take a picture every day this year. I’ve been posting those photos over at:

It’s been a fun project and I’m enjoying knowing that, on days when I’m too tired to write anything, at least I have a tiny, flickering token from our day that reminds me that we were alive every day this year. Hopefully, I will turn them into a printed book for Elsa one day.

Life is great today. I have such a hard time not adding the caveat, “The other shoe could drop any second! She could be sick tomorrow! I know everything can fall apart at any second!” That’s something I’m working on.

Life is great today. There. That’s it. Done.

………

Wait. Not done yet. Here is a funny little montage of approximately 45seconds in the emotional life of Elsa. If you’re wondering why we are eating hot dogs in the car, it was a little too windy for the picnic I had planned at the park, so we ate in the car instead. Minus the brief meltdown over a stolen goldfish, it was a lovely picnic (I couldn’t figure out how to make it bigger, but if you click on it, a larger version appears):