366 Days with Leukemia

Shuffling along towards the finish line

Tag: intrathecal methotrexate

April 13, 2013: Maintenance Cycle V

Oh how I have fallen! From a picture every day, to barely one/month, to losing the whole month of March! I started this post back in March, but we’re halfway through April now and it’s just languished here, unfinished. Mostly, we are just busy with life. Cancer takes a backseat now in a way I could have never imagined. Honestly, there are days that I almost forget we are doing this up until 11PM when J drags himself from the couch to mix nightly chemo. I sometimes even forget to carry Purell now. GASP. I know. We’ve grown a bit lax with our sanitizing efforts as E’s counts have continued to remain stable and as her oncologist assures us that we’re doing just fine. A little bit of exposure to the various coughs, sneezes, and runny noses of childhood isn’t a potential death sentence now – though it takes a lot of blind faith to just trust that she’ll be OK.

For awhile, I was planning on taking the blog down. It’s just too much of our life out there and the internet is too sinister a place for us (mostly, for E). However, lately, I’ve been getting quite a few emails from families saying, “Thank you for writing all this!” So I continue onward, cautiously. It would be a shame not to have this place to document this upcoming October (!!!) when this part of our life becomes just another part of family lore. “Hey, remember that time our kid had cancer?”

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IV vincristine, spinal Methotrexate, a 4 hour IVIG infusion, and 5 days of steroids are always a reminder that we are still doing this, though. Maintenance Cycle 5 got off without a hitch. Good counts, an easy port access, a complication-free spinal tap followed by a well-deserved breakfast, and approximately 500 episodes of Curious George. Elsa was Brave with a capital B at clinic, which she now proudly announces. Treatment is very different now than it was two years ago. She’s a kid getting chemo instead of a baby and the whole transition has been pretty wild. It wasn’t easy managing a baby with cancer, but I have to say that  I’m glad the majority of the experience is behind her and happened before she could talk. As she gets older and as our conversations grow more complex, it’s pretty  draining to hear her fret over how tubey is going to hurt or how she’s sick and needs to go to the HOPsital. She worries now.

If there were one picture that could sum up steroid week, it would be this:

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Despondent to the max. And if I couldn’t use that picture, it would be this:

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A constant buffet of choice snacks and the glazed-over look of a kid who has been watching TV for HOURS.

Thankfully, it’s only a week. One week of TV, sleeplessness, and 24 hour grumps really isn’t so bad compared to the 10 straight months of it that we lived once upon a time. The week passed and, when it was over and behind us, we tried to drink up the idea that we only have two more big chemo days. Maintenance Cycles 6 and 7 and then leukemia is history. Woah.

352/366: maintenance, cycle 4

Pre-spinal tap hang-out with Cardeents:
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Spinal tap prep
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Post-spinal tap pleasant delirium:
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Spinal chemo? Check. IV chemo? Check. Now just four hours for her IVIG infusion (and 5 LONG days of steroids) and we’re DONE with the hard part of maintenance Cycle 4! And look who can drag her own pump around now (while devouring lollipops, no less):

I wish we could communicate to Elsa just how proud we are of her and I hope someday she knows how lucky I feel to be the person who gets to sit by her and hold her hand through these days. I’m often find myself stunned by this hardcore little person who was very recently part of me but who is now, very much, her own person.

268/366: better. different.

Our last clinic visit marked some sort of shedding of the last of Elsa’s baby-ness. She gets it now. This cancer part of her life is not really that fun. Gone are the days of our sweet, bald toddler who would run into clinic like she was the Mayor, waving and blowing kisses. She’s a big girl now (as she reminds us, hourly) and big girls know that needles hurt and toys are more fun to play with at home or at school. I’m thankful though – thankful that this part of her life is compartmentalized enough now that she even knows the dark from the light. Chemo is an isolated, mildly unpleasant anomaly now and not her entire universe. She’s not miserable there, but she shows a new kind of wariness and uncertainty we never saw before.

We had our “big” chemo day today: our once-every-three month package of IV vincristine, spinal methotrexate, and the start of a five-day course of steroids. Our 2-3 medications per day quickly blossomed into 8-9 medications per day, though only until Saturday morning when we can stop the steroids, zantac, colace, miralax, morphine, nystatin, and zofran. Phew. Every second of these five days, I feel thankful that we were randomized to this particular arm of the clinical trial so that we only do this once every three months instead of every month.

Clinic went well. An ipad with a balloon animal app materialized for port access (Hurray for Child Life!) and she got through tear-free, with only a brief cringe and a shudder as the needle approached and entered.

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Then, one and a half hours of grouchiness and the same repeated conversation:

“Mama! Me LolliPOP!”
“After Dr. Parikh puts the medicine in your back. Then you can have a lollipop.”
[brief hysterics]

Putting the medicine in her back was also pretty uneventful. Part of the whole spinal routine is that they check her spinal fluid for cancer cells and then inject methotrexate to keep her central nervous system cancer-free. Since those early days, we don’t actually get word of results back from these spinals. The assumption is: no news = no cancer. Only 4 more of these procedures left, thank goodness.

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Finally, they gave her all of the pre-medications for her IVIG infusion (which I explain here) and, because of the Bendaryl, she slept for the next three hours while getting the infusion. We did get the news that she will require IVIG infusions monthly until she finishes treatment so that was a bummer. Hopefully they will keep her healthy and germ-free throughout the school-year, though.

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Another clinic day done. Just four more days of steroids to endure this week. 380 more chemo pills to give after bedtime. 4 more spinal taps. 4 more steroid/vincristine pulses. The numbers are feeling a little more . . . manageable.

 

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184/366: chemo resumes, chemo pauses

As much as the past two months have felt like we are living a normal life, today was a reminder that we are definitely still doing this whole leukemia thing: Blood counts, IV chemo (vincristine), and spinal chemo. J usually makes it to most of our appointments, but he started a new clinical rotation today and was too far away to be able to stop by for a visit. Thank goodness for our amazing friend who came with us for the day to help push IV poles, give me bathroom breaks, and generally provide extra distraction.

There was some unexpected news that Elsa’s ANC is only 440, which means she has crashed a bit. She’s probably fighting a virus, but they want her to take a week off from oral chemo, to allow her counts to recover. They also prescribed some wacky medicine (Leucovorin) that we have to give her to decrease the effects of her spinal methotrexate to prevent her counts from dipping further. Just when you think you have the routine down to a science, there will always be a curveball or two!

We’ll head back to clinic in a week to get her blood re-checked and will hopefully re-start oral chemo. As nice as it is to not have to crush up those pills at 11:30 at night, it feels a little like we’re free-falling when she misses chemo doses. Chemo is, after all, what keeps her here with us.

A few pictures from our second official chemo visit of maintenance:

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Unfortunately, a few hours after we got home, Elsa got pretty lethargic and suspiciously warm. I checked her temper and she had a fever of 101.3. Back to the hospital we headed, this time to the ER because clinic was closed. We expected to be admitted for another inpatient stay (I even packed all 400 extra pillows that we always bring) since she had a fever and her counts that morning had been below 500. Thankfully though, her ANC, by evening, had risen to 600 so they gave her a dose of IV antibiotics and sent us home (the rule is, you go home if the ANC is over 500). There is almost no better feeling than being sent back to your own home and your own bed after you have been sure that you would be imprisoned in the hospital for a week. J and I celebrated like we’d won the lottery. The combo of chemo in the morning and a fever made for a pretty grumpy baby. The lack of clothing for both babies was, of course, her idea:

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April 11, 2012: Begin Maintenance Sequence

(In my mind, the title of this post is to be said in a robot voice)

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:

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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.

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

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

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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!

March 8, 2012: tiresome

Just revving myself up for a long, long day of clinic tomorrow. 9:00 blood draw followed by interminable waiting to hear if we have “made counts” in order to get chemo. I’m curious to see if our recent bout with the family stomach bug has plummeted her immune system or if we are in the clear. Then, more interminable waiting while pharmacy makes her chemo and then [thankfully] triple and quadruple checks it to make sure there are no medication errors. I can already hear myself saying hundreds of times, “No sweetie. You can’t eat until Dr. Parikh gives you the medicine in your back. Sorry. No water. Sorry. No.” Then, 1:00 spinal tap.

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.

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December 30, 2011: Let’s stay with it.

I am writing for the sake of writing. Keeping the blog going. CPR. Resume compressions. I think I’ve done this before.

I’ve been meaning to share this photo for ages. Years even. Next to our coffee maker (which is truly, the most important object in my life), I taped a fortune cookie fortune to the wall. It was the best fortune I have ever received and it is the guiding mantra of my days – even before cancer snuck into our house.

I had planned for some grand entrance for my fortune cookie fortune, but this will have to do. I even think of renaming the blog sometimes: “not the end yet. Let’s stay with it.” Perfection.

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We are floating in limbo, waiting for the second half of Delayed Intensification to start. Tuesday looms on the horizon with new chemos (Cyclophosphamide, Thioguanine, and Ara-C,) and a spinal tap (Methotrexate). Blech. Drats. Shucks. Darn. Fiddlesticks. Fuck ‘em.

The dark cloud of steroids is slowly lifting, so that is drastically improving the quality of our life. I must say that they did take quite the toll this time around. Elsa is hobbling around the house like a 90 year old man in need of a hip replacement and she has a slight tremor which only furthers the “old man” image she is projecting to the world. She got an x-ray of her right hip this past Tuesday because her gait is so unsteady. Hopefully, she is just sore and achy from the steroids and we won’t have to explore scarier paths like Avascular Necrosis of her hip. See, I’m crossing it out just to teach it a lesson.

Her bottom is fiery red from a diaper rash the hospital so graciously bestowed upon her with antibiotic-related diarrhea. She gained 2.2 pounds in the last week, thanks to the guacamole she mainlined 24 hours/day for the past week. Shiny, puffy cheeks and taught, stretched belly returned to give her that extra “Something is very wrong with me but I’m still cute” look. Plus, all the hair she had grown over the past few months jumped ship. There is something about the hair loss that just screams, “Get us out of here! This body is poisonous!”

Sometimes I just look at her and think, “Really? This is my daughter? My sweet girl?”

Just like she bounced back from those first 29 days, and we enjoyed sporadic moments of normalcy over the last few months, I assume that will happen again. I am learning that these dark days are cyclical and, so far, they have always been followed by relief and release. No reason to assume otherwise at this point.

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Gosh. I think this all sounded more melancholy than I intended. To be truthful, today, I had a great day! I think it is just that it is midnight and I got all caught up in an I-Hate-Steroids frenzy. Today was a good day. I got time to myself. Therapy, even! Elsa played with her Grampy and her Auntie Cardeents. I managed to reply to a few more emails that are months overdue (truly, they are emails from August). Look, I’m writing. Writing always helps.

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Elsa and her puffy cheeks at clinic this past Tuesday. No chemo, just blood tests and an x-ray. The light in her eyes hadn’t yet returned, though steroids finished 24 hours prior. Slowly, she’s getting her glow back.

September 12, 2011: Consolidation Underway

I know life is getting a little more “normal” because I am back to my old procrastinating ways! I have about 8 unfinished posts to tackle, a slew of “thank-you” cards to write, a number of house organizing projects, wedding photos to edit (that is the subject of another post!) and a handful of undone errands. I’m happy to say that, for the time being, “wallowing” has been taken off my list. My handy little kitchen chalkboard has even awoken from it’s dormancy to tell me what to do every morning. I can barely contain my enthusiasm for having a looming “To-Do” list again that does not include, “Stop all other activities and be miserable about Elsa’s cancer.”

Notice: No wallowing.

Now for some treatment information since I know that is why most people are here reading.

We are on Day 53 of her cancer treatment.

We had a 9 day delay in starting the next phase of treatment. These delays are normal, but frustrating when all you want to do is get this crap over with. Elsa’s bone marrow was pretty severely depressed after 29 days of the Induction onslaught so it took her awhile to “make counts” in order to start the next phase. Whenever I talk about “making counts,” it means that we are waiting for her ANC (the # that tells us the strength of her immune system) to reach a certain level where it is high enough for the next onslaught. In this case, they wanted her to be above 750 in order to start Consolidation. We had two visits where we went in, prepared for chemo, but they sent us home with a “Sorry, no chemo today.” We called it our “Chemo Vacation,” and you’ve got to love a chemo vacation, even if it is unplanned. Finally, she made counts on Tuesday, September 6th.

We are now on Day 7 of the 2nd phase of treatment called “Consolidation.”

Consolidation is considered one of the easiest phases throughout treatment and is certainly the easiest phase for the next few months. Thus, we are trying to enjoy ourselves heartily before things get ugly again. Here is what the Consolidation schedule looks like:

-Vinchristine IV (into her port) on Day 1
-Methotrexate IT (into her spine) on Days 1, 8, and 15
-Mercaptopurine (oral chemo – also called “6-MP”) by mouth every night for 29 days.

Easy, right!? I know it sounds nuts, but by chemo standards, it really is a breeze. Two of those drugs are known enemies to us (the Vinchristine and Methotrexate) so we are already pretty experienced in dealing with their side effects. She gets sedatives during the spinal taps so those go pretty smoothly now. So far, the 6-MP hasn’t been giving us too many issues except for a pretty marked decrease in her appetite. All in all, except for the baldy head, she doesn’t really look or act sick for the time being.

Working on another post: Consolidation In Pictures. Coming soon!

For now, I leave you with this blurry, but aggressive dose of cuteness:

Just hanging at the Stevensons.

September 6, 2011: First Day of Consolidation

When we get to clinic, Elsa first gets her port accessed. Before we leave in the morning, I put numbing cream over her port (kept in place by Glad Press & Seal – the best!) so that she doesn’t even feel the needle insertion. This is one of the nice things about her being a toddler for all of this: Toddler brain + no pain = No fear. Phew.

That mask stays on for approximately 0.03 seconds. And the glove? The glove is just for fashion.

Here she is having the needle placed. Her port lies just under the skin on her left chest wall. Notice her total apathy and boredom. Seeing this picture, I realize that I should be wearing a mask too! I’m breathing down her neck, all over her sterile field – oy. Bad nurse mom. Bad, bad nurse mom. Sheesh.

Needle in my chest? Ho hum.

Once the needle is in, they tape it down and leave it there for the rest of our visit. This way, they can draw blood, give her fluid/transfusions/medications if needed, and give her chemo. When this whole thing started, I was terrified she would pull at the needle, but once it is in there, she forgets it exists. Another great thing about toddler brain: Out of sight, out of mind. Her port is a little positional – they say that the tube inside might get a little kinked on her collar-bone – so we have to move her arm around a bit when she gets her blood drawn. She finds all this arm flapping pretty amusing. Plus, you can’t hear it, but Mary, her nurse, is singing, “Where is Tubey? Where is Tubey? Here I am! Here I am!” (to the tune of “Where is Thumbkin?”) “Tubey,” is what the nurses call the kids’ port access devices. P.S. If I could take Mary home with me, I would. Immediately. Elsa loves her, to the max.

Getting blood drawn? Nothing to it!

Now, we spend two hours waiting around for her blood test results. We are mainly interested in her ANC (Absolute Neutrophil Count), which is a measure of her immune system’s strength. They are also looking to make sure her hemoglobin, hematocrit, and platelets are up to snuff. Plus, they are always watching her liver and kidneys to make sure the chemo isn’t getting too toxic. We spend this waiting time: running around the 2nd floor of the hospital, visiting the GI clinic (which is right across the hall), riding the elevators up to the 8th floor and back down to the basement, checking in on the Surgery clinic waiting room (where they have some neat toys), stealing the nurses’ keys so we can go try to open various locked cabinets, and playing with the Child Life staff in the oncology waiting area. I was too busy chasing her, so no pictures of all that fun stuff. Grammy came with us on this last visit, so here, Elsa gets her blood pressure checked while washing Grammy’s arm.

Multitasking.

Once her blood results are back and we have waited the requisite 6 hours without eating/drinking, Elsa is ready for the procedure room. There, she gets a lumbar puncture (spinal tap) and the intrathecal methotrexate (chemo in her spine). Thank goodness it is 2011 and kids get sedated for these procedures. Mary was telling us that, when she first started doing pediatric oncology, they didn’t sedate the kids for anything – not even the bone marrow biopsies. She said that, you would have to pry children off the door frame, kicking and screaming, to get them manhandled down on the table.

Elsa, on the other hand, waltzes into the room, climbs up on the table and sits happily while they give her Versed (medicine for sedation) to make her silly and floppy. Sometimes, she even does a little hip wiggling dance that makes everyone in the room smile. Once she is lying on the table, they give her Ketamine (both for pain control and sedation), and, though her eyes are open throughout the whole procedure, she lies still and quiet. The first couple of times she needed procedures, I sobbed quietly through the whole thing, holding on to her face and whispering in my head, “I’m so sorry. I’m so sorry.” I’m happy to say that, for the last two spinal taps, I have made it through without a tear – funny the things you can get used to.

Getting some versed - about to get real silly!

Versed + light-up toys = genius

Feeling good. . . .

Needles in my back? No sweat.

The actual spinal tap/spinal chemo, thankfully, only takes about 5 minutes. They watch her pulse and oxygen saturation through the whole thing and, so far, she has done exceptionally well for all her procedures.

Just a little post-sedation hallucination.

That hardest part is keeping her lying flat for 30 minutes after the procedure, but I have mastered how to climb up on the table and nurse her lying down. Reason #57 I am happy she is still nursing.

And now for my official, favorite picture of all time:

Hey mom! Hey dad! That was fun!

With a look of deep concern, people often ask me, “Is it just terrible having all these clinic visits?” As you can see, we generally have a great time at clinic. There will be some phases of treatment in our future where we might have less fun, but for now, we are trying to enjoy ourselves as much as possible.

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