Somewhat Calmer Days

I’m in the second trimester of my pregnancy (at least, I am according to one of the apps on my phone) and things have mellowed out some. Not a lot, but enough that I’m not waking up at 5am having panic attacks and worrying about my ability to parent a second child effectively. Instead I’m waking up at 5am and trying to soothe Jack back to sleep because he’s had a nightmare or three. Or I’m contemplating murdering one of my cats – either the one that likes to scratch every wooden surface in the house or the one that lets out loud, melancholy yowls when he can see the bottom of his food dish.

Pregnancy has made me much less tolerant of my animals’ antics. David has had to tell me to stop trying to give away our pets. And I said fine, but I can’t be held accountable if one (or all) of them doesn’t make it to the end of this pregnancy.

Hormones – they are raging in full force!

Aside from Jack’s nightmares, things with Jack have been a little more manageable as of late. He is enjoying his new adapted PE class, which means, for the first time EVER, he is enjoying physical education at school. We’re being much more lax on homework and watching the clock so that he doesn’t work on homework longer than 20 minutes each night. This helps us all feel less stressed! We bought him a new memory foam mattress and it seems like it’s helping him get out of bed in the morning without the aches and pains (and it’s good for me because my arms were falling asleep when I would lay down with him on his old mattress).

Jack’s been attending therapy for about four weeks now, as well, which started when he began showing signs of depression. He loves going to therapy, which is play-based. He gets to talk about whatever he wants and he’s assured that it’s all private (unless, of course, there is talk of hurting himself or others). He’s had fewer angry outbursts and seems to be more talkative about other things now. Next we’ll have to see if we can do something about those nightmares.

David and I are going in this Friday for our next prenatal appointment and we’re supposed to have another ultrasound done. I’ll be 14 weeks exactly, and the ultrasound tech I spoke with last time I was in said she can usually tell the gender at that time. My fingers are crossed that we’ll be able to find out – baby names are driving me crazy and I hope that knowing the gender will help bring some clarity in that arena. David and I aren’t finding it easy to agree on names – he likes classic American/English names and I generally prefer things that aren’t in the top 100…not to mention that quite a few people I know have either had babies recently or are giving birth this year and some of the names on our list are also being considered by friends.

“You know too many people,” David says.

Jack thinks the baby will be a boy, although the only name suggestion he has offered is for a girl – Ruby. I was impressed by his suggestion, and also a little surprised because he usually names things according to the color they are. Although, now that I think of it, perhaps he is taking inspiration from my own gemstone-inspired name. Huh. (That’s how names get taken off the list sometimes – a thought occurs to one of us like “oh that starts a theme” or “but that reminds me of that crazy person” or “too many celebrity babies have that name.”)

Naming babies is hard…

Anyway, that’s the latest and greatest in our household. And, yeah, feel free to throw some names at us if you think of anything!

Anger Turned Inward

Recently Jack told David that his life was perfect. David looked at him incredulously and asked, “What about the cancer?”

Jack replied, “Cancer doesn’t bother me much.”

Yeah…okay.

Tuesday morning I found Jack sitting in a corner of his room by himself when he was supposed to be putting his shoes on. He was just sitting there. When I asked him what was going on, he told me he felt weird and sad and didn’t know why.

Are you sad because you don’t feel good?
Are you sad because you miss your dad and brother?
Are you tired and that’s making you sad?
Is there something happening at school to make you sad?

None of those, he said. He just didn’t know. He was sad and teary and had no energy for school.

I pulled him into my lap and cuddled with him. I told him I felt that way sometimes, too. We decided to stay home and snuggle under the covers and watch a movie together. We would have a mental health day.

He went to school on Wednesday, and then Thursday came around. Upon waking, he complained that his back hurt, he was shivery, and he had no energy. We went about our normal morning routine and I hoped he would rally and be able to go to school. But he did not. Instead his stomach and chest started hurting.

I decided to give him some time and then I told him I was going to take him to school but that if he wasn’t feeling better by lunch time, I would pick him up. He buried his head in the couch and started hitting it. He growled. I told him I would let him work it out and get his shoes on while I brushed my teeth. But when I came back, he was throwing things and holding up a screwdriver by his face and pulling on his hair. I told him he wasn’t allowed to hurt himself, and he stomped off to his bedroom and slammed the door behind him.

After a bit he emerged again but was still growling and stomping and throwing things about. So I tried to talk to him.

You seem really upset. I bet you’re mad that you feel sick all the time. You probably hate taking so many pills. And you don’t have any control over those pills.

“The pills feel like poison,” he replied. He had quieted a bit and was listening to me, albeit with a frown in place.

I bet that makes you mad that you have to take medicine and that medicine doesn’t even make you feel good – it just makes you feel worse!

Jack nodded.

Medicine is no fun. And you know what, cancer sucks. I hate cancer. It’s not fair that you have to deal with cancer, Jack. You didn’t do anything to deserve cancer. Cancer is a jerk and it shouldn’t be allowed!

“Yeah, I hate cancer, too! It makes me want to break things!”

Well, you can’t break things, but what about ripping things? I’m sure we have scratch paper you can rip up. Sometimes ripping things up makes me feel better. Oooh, and what if you drew cancer and THEN ripped it up?!

That got some life back into him. We headed to the office and I found some scratch paper and handed it over to him. I then gave him some space.

He drew two pictures, each time coming to find me and show me how he could rip cancer to shreds. He shouted “murder” at the pieces and then stomped on them. A bit of a smile came onto his face after destroying the second drawing. I asked if he would draw one for me to rip up, too. He went right to work and came back with an illustration of a body labeled cancer and a dotted line across its throat. He pointed and said, “This is where you can rip its head off.”

I ripped its head off and then kept on ripping while yelling at it, “I hate you, cancer. How dare you hurt my son! You leave Jack alone! No one wants you here! You suck and we hate you! Don’t ever come back!”

And then I stomped on the little pieces for good measure while a cackle bubbled up in Jack’s throat. I felt so much relief to hear that laugh. My boy was back, if just for a bit. We had broken through the cloud that engulfed him.

He kept drawing and I made a phone call to see if I could move up the initial appointment with the new therapist. Thankfully, a spot had opened up in her schedule for that evening.

I then got a text from Jack’s aunt asking if some time with cousins might cheer Jack up. Thank you thank you thank you, I thought. We ate lunch and headed straight there. His aunt and I drank tea and chatted while Jack and his cousin Isha closeted themselves in the office and drew pictures together.

Later, he put up a fight about leaving and got angry all over again but we headed to the therapist’s office anyway. After an hour with her, he was almost back to his old self. I don’t know the details about their session, but Jack did draw something for the therapist and also said, “I told her about my sad feelings.” He also said he’d love to come back. So, I’ll count that as a good session indeed.

Jack asked to watch an episode of Cupcake Wars with me when we got home. We snuggled up and watched a British-themed episode. Jack kept petting me the whole time and we hugged over and over.

It was a terribly rough day in an already difficult week, but at the end it felt like we’d made progress. Maybe Jack’s grief has moved on from denial and he is now allowing the anger to come out. Maybe next time he talks about cancer, he’ll admit that it sucks instead of pretending that his life is perfect.

Even if he doesn’t, we have one picture leftover from yesterday to mark the occasion. We may have to frame it.

CancersGrave

Not Your Average Kid

Jack doesn’t like juice. He prefers milk or water (no bubbles!).

He won’t eat pizza.

He doesn’t like being dirty or sticky.

He gets upset for characters in books and trees that get cut down.

Jokes about bodily functions offend him and he refuses to even talk about those things. (We had to stop reading the How To Train Your Dragon series.)

As far as he is concerned, Band-Aids are the devil. He will absolutely not wear them. If somehow he gets one put on (like after a vaccination or a lumbar puncture, it’s hell trying to take it off him.)

He won’t wear shorts or tank tops. In fact, he’d like to be fully clothed (with sleeves) at pretty much all times.

Sponge Bob annoys him.

He thinks everyone should be able to easily draw like he does.

He will put himself in time out at school if he feels he’s done something wrong.

He doesn’t like guns.

He likes for his clothes to match.

His tolerance for others’ silliness is low, even though he is quite the goofball when he feels like it.

He loves things that other kids would think are spooky – aliens, monsters, bugs, etc.

He doesn’t sing or dance. He doesn’t like when others do it in front of him, either. He does hum when he thinks no one can hear him, though (but gets upset if you DO hear and comment on it).

He loves his long hair even though people mistake him for a girl often.

Choice Quotes From Jack

Some of my favorite quotes from Jack’s twitter account.

(Holding up Yogurt Drops and Wheat Things) “I feel up for a little fusion.”

Those are old school cool! They’ve been around since I was like 1 or 2.

Why is it so peaceful here? I want to be a hero but there’s no chance here!

In the sense that I have all the parts I need, I’m complete. But in the sense that I’m still growing to be a grown up, I’m not complete.

The bad thing about getting older is that things get harder.

Sometimes I eat more sophisticated chicken.

I feel like chicken filled with whipped cream instead of muscles.

You know why I’m like this – it’s because of the droids! (Just wrapped up a week of steROIDS.)

Being all amazing and things is not hard at all for me.

Maybe in the future, maybe in 20 years, we can learn to make magic happen.

I have three parts: good parts, bad parts, and dragon parts.

You can’t touch time. But a clock can!

Milk glues bones together in a tasty way.

We Just Don’t Know

Here’s what’s going on in our medical mystery world right now. (Note: I wish I had the brain power to write this more better but I just don’t. I won’t be able to decide if any of this even makes sense. If you know an oncologist or neurologist or some other amazing person who can decipher medical crap, please feel free to seek their opinion on my behalf. Because I’m losing my mind.)

Yesterday Jack woke up with thigh & pelvic pain and complained that his legs were feeling “floppy.” (The best guess as to what “floppy” means is weakness. When his legs are tested, he definitely has strength but no endurance.) He couldn’t walk…for hours. I carried him everywhere. He sat on the floor while brushing his teeth and crawled to the living room if I wasn’t right there to pick him up.

He also complained, at various times, that his back hurt and his sides (kidney area) hurt and his chest hurt. He’s on ranitidine for heartburn and we give him tums, too. His kidney function tests look pretty good. He’s going to the bathroom normally…

The pain and floppiness comes and goes and doesn’t seem to be related to anything. It does seem to be more prominent on the weekdays, which could be because he’s taxed more by school but who knows. I mean, on the weekends he doesn’t have to get up at 7am and has a lot more time to laze about.

New symptoms crop up every now and then. The other day he trailed off mid-sentence when answering a question. Maybe he was just tired? Maybe not? He has pains in his joints sometimes, which is not uncommon with his meds anyway. He had a period yesterday where he felt cold sensations on his body (trunk area), as well.

So far the docs have lowered Jack’s Diamox dose to help with the acidosis and the floppiness. It hasn’t helped yet (after two and a half weeks at the lower dose).

Yesterday the docs said, what the hell, let’s try to give him sodium bicarbonate and see if that relieves his symptoms! Even though the acidosis is mild and most kids at that level don’t have any issues, maybe Jack is just more sensitive to it.

I’ve talked to all his doctors and the nurse case manager multiple times on an almost-daily basis. They don’t know what’s going on. We keep hearing suggestions that this is related to school avoidance. While that is possible, it’s really hard to buy when the kid is yowling in pain and refusing to walk for hours. And when he berates himself and hits himself in the head because it’s another day of him missing school?

I just don’t know. It doesn’t seem to fit.

Sure, he doesn’t like school very much and he doesn’t look forward to going. He thinks the subject matter is boring. But he has friends and loves his teacher and being at home is pretty freaking boring.

So everyone is scratching their heads. If it’s not a psychological issue, then other (also unlikely) possible explanations are:

  • Jack is more aware of what is going on with his body than your average kid, so is more sensitive to (and vocal about) the affects of even mild acidosis.
  • Jack has a neurological issue going on.
  • Something is going on with the cancer and they just can’t see it for some reason.

The sensitivity to acidosis is likely at least part of what is going on, but we’re not sure that it explains everything, particularly when the symptoms are getting worse but the numbers are pretty steady. The bicarb he started last night should answer that question one way or the other.

A neurological issue…would it come and go? I have no clue. He’s been examined by a neurologist for neuropathy and she said he shows very few signs of nerve damage – nothing that would suggest he would be unable to walk sometimes.

And then there’s cancer, which is what comes to mind first since that’s what he’s fighting anyway. The oncologists say that it would be VERY unlikely for relapse to happen while still in treatment. But, it does happen…rarely. Jack’s labs haven’t shown anything unusual, though. Cancer can hide in the spinal fluid…but Jack didn’t have it in his spinal fluid when he was diagnosed, so it would be super weird for it to appear there now.

Not impossible, but very unlikely.

The reason why I’m keeping this possibility on the list and asking questions about it is because when Jack was first diagnosed with Leukemia the symptoms were a lot like this. In fact, he had a virus around Christmas and even once that cleared up, he had weird issues. Pains that moved. Symptoms that came and went and were in different parts of his body at any given time. One minute he would be in pain on the couch and the next he’d be completely normal.

We worried he was trying to get out of school. Alas, he wasn’t! And thank goodness we had him checked out!

But he had a (slight) fever then. And he doesn’t now.

Anyway, he goes in on the 25th to receive chemo in the spine, so they can check the spinal fluid out then to be sure he’s cancer-free. Fingers crossed!

I just want him to feel good and be able to go to school. I want to not wonder what the next day is going to be like. I don’t want to worry about some sinister thing lurking around the corner to hit us in the head.

Suggestions for Psychological Struggles with Pills

About a year ago, at age 6, Jack suddenly developed an aversion to taking pills. He would either gag when he tried to swallow or he would be frozen with anxiety and unable to swallow at all. I was in a horrible state of panic, and it didn’t help that when I called the oncology clinic for help, I was told by our nurse case manager that he absolutely HAD to take his pills because every missed dose increased his risk of relapse.

Yeah, way to help.

The social worker was about as helpful – she recommended stronger discipline.

Um, lady! WTF! My kid is dealing with some massive fear and anxiety here and you are suggesting I discipine him for that??

Up until that point, Jack had taken his pills in applesauce or yogurt. He kept developing aversions to the foods he was taking the pills with, though. We tried peanut butter, as well, and that worked for a bit before it didn’t anymore. I tried crushing the pills and dissolving the pills in liquid – no dice.

We met with the clinic’s child life specialist who had a talk with Jack about why taking medications isn’t very much fun. Jack wasn’t very talkative, though. It stressed him out even more to discuss it. She was very empathetic but had no more success than anyone else. She quickly realized he couldn’t even practice taking pills because it was the THOUGHT that was getting to him, not the actual pills themselves.

Even though she wasn’t successful in helping, at least I felt like she understood our situation better than the other professionals we were working with. I felt a bit better because I knew I’d sought out help, even if it wasn’t ultimately all that helpful.

It got to the point where Jack was going to need an NG tube. We’d tried for hours to get his pills into him one night with no success. We were ALL in tears. We resigned ourselves to going in for the NG tube placement the next day and headed to bed. Thankfully, though, I tried one last bribe and it worked.

What we learned was that a combination of things would ensure the success of pill taking:

  • He had to take his pills in nutella – but with just enough to cover the pills up. No big globs!
  • We had to say that it was time for nutella, and ONLY nutella. “There’s nothing in this spoonful but nutella!” He considered it to be a fun joke.
  • Jack chose where in the house he wanted to be when this occurred – it couldn’t be in the place where he ate dinner or watched shows. He tried sitting in a chair and standing up and decided what worked best.
  • Bribery – I told him he could have any toy he wanted but he had to keep trying his very best to take the pills every day.

Also, Jack really had to be the one to make the decision to do this. Kids going through treatment for cancer (and other treatments for chronic illnesses) lack so much control about what is happening to them. So I had to hold the spoon but not push it into his mouth – he had to tell me he was ready and put his mouth around the spoon while I stood still. This was a way he could take back some of the control and feel less pressure.

Now that we’ve had more time under our belts with this, I’ve come up with some other ideas that might be useful if you’re dealing with this kind of (psychological) struggle.

  • Offer a distraction – it might be easier to take pills if there’s something else to focus on (the school nurse gave Jack a spiral bound notebook to draw in when it was time for him to take his afternoon dose), such as a favorite TV show to watch or book to read.
  • Have another parent or professional administer the pills – and stay out of the room while this happens. Your child may sense your stress and worry, so remove yourself from the equation.
  • Offer a comfort item during the process.
  • Remove other sources of stress and avoid trying to give pills at times of high fatigue. If your kid hates taking a bath, try not to line up a bath right before or after medication time and maybe take fewer baths. If homework is creating more stress and exhaustion, reduce the workload. Jack always had a more difficult time at the end of the day because he was more worn out.
  • Disguise the pills. It didn’t work for us, but it might for you. I know one mom who crushed the pills and put them into melted chocolate, which then became candy. You could also try a smoothie or milkshake – just make sure the ingredients won’t impact the medicine’s potency AND you have to ensure the whole serving is finished.
  • Again, bribery and/or rewards! This doesn’t have to be a toy – it can be an activity, money, or a piece of candy that is granted after the pill is taken. Instead of doing something because I’ve told him he has to, Jack feels like he is choosing to do it in order to get a reward. For instance, we have a list of chores that Jack can choose to do to earn tokens – those tokens can then be collected and traded in for things like movie rentals or gift cards for shopping on amazon (which are things he is particularly interested in).
  • Seek psychological help. Sometimes a psychologist can figure out something that will work based on your child’s emotional state and needs. Perhaps play therapy?

It took us a lot of tears and stress and phone calls and begging to get Jack to take pills regularly, but once we figured out what worked for him and stuck to it, things got a lot better. Chances are even if you can’t find a solution right now, your kid will outgrow some part of the problem and you can try again at a later date.

Hang in there. You can only do your best and no more!

Just Another Morning

6:45am – Time to wake up. Ugh. Maybe I’ll just stay here for a bit in this warm bed. Well, hm. I’ll see if I can start the wake up process with Jack.

6:50am – Attempt to wake Jack up. He doesn’t even stir. Go off to make coffee.

7:00am – Try to wake Jack up again. Make no progress, so return to bed to drink coffee and hope he’ll wake up on his own. Gosh, when do we hit the point where I need to find out if he’s UNABLE to wake up? Well, I’ll give it a bit longer – maybe he just needs extra sleep since he got chemo yesterday.

7:15am – He’s been asleep almost 11 hours…but he was feeling poorly last night…hmmmm, what to do. Okay I’ll drink my coffee and tend to my dragon game.

7:45am – Okay, obviously he needs the sleep – it’s even light outside now. I’ll let him sleep in and he can be late to school. I’d better let my boss know what’s going on.

8:30am – Jack wakes himself up with a few coughs and gasps. He complains he is having trouble breathing and drags himself into the living room and I make him breakfast. He complains that his arm hurts. He complains that his stomach hurts. He pounds his fist against his chest and mutters, “I neeeeeed to go to schooooool.” I tell him not to worry about it and just eat breakfast and see if he feels better afterward. I take his temperature, but it’s normal.

9:12am – Breakfast is finished, meds are taken, now he’s cuddling in bed with me while I work. Well, really, he’s slumped over in bed next to me. He has the colored pencils and paper that he asked for in front of him but isn’t touching them. Is he sleeping? No, he stirs. I wonder if I should call the clinic. I have gotten nowhere lately with calling the clinic. He was fine all weekend and now he feels like crap again. Ugh, chemo. I hate chemo. I hate this whole mess.

9:30am – The clinic calls to confirm ANC is 1,056 and that chemo has been started at the new, reduced dose. The nurse asks how Jack is doing and I tell her. She says to call if the breathing problem gets worse.

10:00am – Jack is bored. He gets up out of bed, then immediately lays down on the floor. He’s definitely not going to school today.

I give up.

TARDIS Room Makeover Results

I know you have all been waiting on pins and needles to see Jack’s TARDIS room (those who weren’t probably have no idea what a TARDIS is – so, fyi, it’s basically a time traveling space ship from the British TV show Dr. Who – on the outside it appears to be a police phone box but inside it’s infinite). If you don’t know what I’m talking about, you should go back and read the post about turning his bedroom into a TARDIS, otherwise this post won’t make a whole lot of sense.

Firstly, the room turned out pretty well and Jack LOVES it. He spends so much more time in his room now and he is much better about keeping it clean. There is so much more than can be done but David already got a raging cold during this process and I got a case of pink eye from spending so much time in a tiny room with lots of paint fumes. Plus, we’re pretty broke now. :P

Anyway, please know that I’m a terrible photographer and Jack’s room is fairly small, so these pictures are not good at all. I know you can’t tell, but the bed is painted a silvery gray and the walls are a golden yellow (to make it look lit up).

Here is the horrible, disgusting, embarrassing BEFORE picture:

JacksRoom

Here is the door to the TARDIS (paint color is Elmer’s Echo from Kelly-Moore and the decals are from bioblitz on Etsy):

door

It’s bigger on the inside…

This is the loft bed that David slaved over using plans from ana-white.com (we wanted to go with a bed that had stairs and a platform rather than a ladder to make it easier for Jack to get up and down when he isn’t feeling well) and painted while I was away at Type A:

Bed

I recreated the lights inside the TARDIS using cardboard cake rounds, a sharpie, and some cellophane, then used double-sided mounting tabs to stick them to the wall:

lights

This is Jack’s view (at least, what my phone could capture) from atop his bed (before it was painted):

walls

You might notice we do not have the control panel coming down from the ceiling with all the levers and buttons to control the TARDIS. That part stumped us – partially because we are concerned about it taking up all the space we created and also because it will be expensive and complicated to create. BUT Jack has changed his Make-A-Wish and it sounds like they are going to come create the control panel and maybe add some other awesome finishing touches to the room (maybe more storage)! So we are off the hook for that part – woohoo!

We are so proud of how this turned out. Jack finally has lots of space to play and a (clean!) room that he loves to spend time in.

The only downside is that now we can never move…

It’s All Very Complicated

It’s been a rocky start to the school year. Jack hasn’t gone a full week yet. Last week he had some chest pain so I took him into the pediatrician to get it checked out. The exam showed everything was fine, but the pediatrician decided to sent him for an xray to be sure. He told me that the chemotherapy drug Vincristine will sometimes cause something called pneumothorax – a condition which thins the lining of the lungs and essentially results in the air in the lungs leaking into the chest cavity and causing pressure and pain.

Is it just me or do the side effects of chemo always sound absolutely horrific? It certainly makes the side effects of over-the-counter medications look like nothing at all!

Anyway, the xray came back and the pediatrician could see no sign of pneumothorax. PHEW. We’re still on the lookout just in case, though, especially since we couldn’t determine whether the chest pain was stress-related or an early sign of something physical. Ugh.

This week on Monday we ran labs to check Jack’s ANC, which was just a tad over two weeks from when he restarted chemo after his hospitalization for febrile neutropenia. From what I understand, counts hit their lowest point somewhere around 7-14 days after starting chemotherapy. He was restarted at only 50% of what his previous dose was of 6mp and Methotrexate (since he was taken off, he now has to ramp up again to higher amounts), so we didn’t expect the counts to drop too much, but with cancer, you always have to check for things like that.

Unfortunately, Jack’s ANC dropped a bunch – from 1296 to 570 in a week’s time. He’s not quite neutropenic, but he’s close (below 500 keeps him home from school). He’s been feeling crappy enough that he’s stayed home from school two days this week because of various pains and low energy anyway. He’s been moodier the last few days, as well, which tends to tip me off that he isn’t feeling so great (which helps me determine if he’s exaggerating it to get out of school!).

I spoke with our oncology case manager about the ANC results and she said they’d like to test Jack to see how he’s metabolizing the 6mp. Apparently some patients have a genetic issue that can cause rapid absorption of that particular chemotherapy drug. They’ve tested to make sure Jack HAS the correct genes, but now they want to test and make sure the genes are functioning appropriately. Additionally, it sounds like he may be switched off of the oral antibiotic (Septra) he currently takes three times a week and onto an inhaled anti-fungal called Pentamidine. Apparently the additional benefit of Pentamidine is that it helps prevent pneumonia. I guess they are still concerned enough about last week’s chest pain to think it’s a good idea to switch medications.

The oncologist told me not to worry and that none of this is unusual, but I’m not exactly comforted by the fact that my son is not reacting in accordance with the standard protocol so they are looking at a special one that will protect his lungs. I’m sure that comes with new and likely slightly worse risks, as well, otherwise he would have been on that treatment protocol already.

We’re taking it in stride, though. At this point in Jack’s treatment that’s all we can do – throw our hands in the air and just go with it.

***

Hey, in case you missed it, you should go read my pal JJ Keith’s article on the importance of vaccination to protect immunosuppressed kids like Jack. I’ll write more about it soon, as well.

And if you’re here because of that article, welcome!

When Self-Care Comes In Second

Jack is back to school! It’s his second week, in fact. And it’s his fifth day making it to class. Yesterday was picture day and he was told by the photographer that he looked like Harry Potter, which made him very happy.

Antibiotics are done and chemo has restarted. As of Sunday Jack’s ANC was an outstanding 1296! All very good things. Whew, we can breathe again.

Life is back to what is ‘normal’ for us, which means it’s catch up time.

Now that things are moving again and we’ve returned to our regularly scheduled life, fatigue and stress are hitting me hard. I can function like nobody’s business when in the middle of a crisis but as soon as it’s contained, I need to sleep for a month! I wish it wasn’t this way – I wish I had been able to rest more while we sat in the hospital room doing a bunch of nothing. But when I napped, I had nightmares.

So ever since we came home from the hospital, I’ve been caught between needing very badly to get some rest and downtime, and stressing out about that rest getting in the way of catching up on all the things I couldn’t do during that week in the hospital. Mostly that’s a lot of paperwork, bill paying, laundry, and house cleaning. Oh and my job. But there is a big chunk of it that is taking care of myself and also getting time with my husband, things that always seem to get pushed behind everything else.

I’m tired, I’m overwhelmed, and I’m in desperate need of both time alone and time with my husband. And I’m depressed because I can’t see any way around this pile of ickiness.  I just have to go through it.

Family leave should include two parts – the part where you take care of your family, and then the part where you recover from taking care of your family. Where’s the downtime for the caregiver?

I know it’s only a matter of time before I feel like things are okay again. I’ll be able to look on the bright side more readily and I will feel less irritated by things that aren’t going smoothly. Maybe I’ll even be able to blog properly.

Of course, if you hear I’ve run off without a word to anyone, it’s likely I’ve found a very deep hole to hibernate in until the storm in my head has passed. I’ll come out in my own time.

Maybe.