Try Not To Worry, She Says

I spoke with Jack’s oncology office yesterday and they let me know that his chemotherapy doses are being increased again.

Back when Jack got sick last August, the chemotherapy was stopped altogether until his immune system started to recover somewhat. Then he was restarted at less than half the dose he had been on previously. It has slooooowly been ramping up over the last eight months. He’s now on about 40% of the full dose of Methotrexate and 70ish% of Mercaptopurine.

Well, now he is apparently going from 40% and 70% all the way up to 100%. I was told that a recent test showed Jack’s thioguanine metabolites were low. I have no idea what that means, but apparently it’s indicative that he should be able to handle the chemotherapy increase (at least for the Mercaptopurine – I’m still waiting for additional answers on the Methotrexate).

I’m not so sure he can handle it, though. Jack’s health has been relatively stable over the last few months but with each dosage increase he’s needed an adjustment period even though the increases have been miniscule. But now the dose is basically doubling. For instance, he’s going from taking 4 chemotherapy pills on Monday nights to 8.5. (That’s just chemo – there are the three other medications he’s taking to manage side effects, putting the total number of pills on Monday nights to 13.)

His dose of sodium bicarbonate (which is supposed to help with the acidosis he’s had for months and months) was also increased this week. The acidosis seems to get worse in relation to the increases in chemo, and yet the oncologist says that this new increase in chemo “shouldn’t” result it the acidosis worsening. Considering that history has shown otherwise, I have no idea what to think about this response.

Anyway…I’m scared. I know partly I’m more emotional than usual because of the pregnancy, but also the multiple trips to the ER last year and the crazy amounts of antibiotics and the unexpected hospital stay are all things I absolutely don’t want to repeat. I know Jack doesn’t want to, either. I know this is likely the best way to keep the cancer away, but I also know it increases the risk of other scary problems like infection. Jack’s oncologist is either not good at explaining what the treatment adjustments mean or she’s lying, neither of which inspires confidence. We deal with frequent complaints of stomach pains, difficulty breathing, and other weirdness in Jack’s body, but right now it’s manageable. I’m not confident it will remain manageable after doubling the chemo.

“Try not to worry. Things are going well,” she said.

But I do worry. Even if things are going well right now, that doesn’t mean they will continue to…

Over Halfway There

I’m in my 22nd week of pregnancy now. We’re over halfway there! We had the baby’s anatomy scan about two weeks ago and it went pretty well. The baby was not being all that cooperative – as I had thought, the kid prefers to tuck himself deep into my pelvis, hence the hip and leg pain I’ve been having for a while now. It took some work on the ultrasound tech’s part to find out the gender because our baby’s little pretzel legs kept getting in the way, but about halfway through we saw undeniable evidence that this one is a boy.

Jack totally called it a few days prior when he said, “I want it to be a girl, but I think it will be a boy.”

I had mixed feelings upon learning the gender, to be honest. I love having a boy already and it seems like boys are a bit easier to raise (with lower-pitched voices). At the same time, my boy is very attached to me and I know girls tend to be more attached to their dads – it would be nice to have someone in the house not obsessed with me (we also have three animals that are males and all gravitate to me)! There are no guarantees, of course. Who knows, maybe this kid will think I’m boring as hell.

Anyway, I’ve gotten used to the idea of having another boy now and all is well on that front.

So, with that, we’ve stopped disagreeing about girl names and turned our focus to boys names. We have two picked out that are tied for first place but I keep hearing one of them pop up all over the place so I don’t know that we’ll go with it. I can’t quite cross it off the list, though.

Last night I dreamed about the baby and saw his face. Unfortunately that didn’t help sway my opinion of either name. Bah! (Maybe I should put the baby’s name up to the a vote – ha!) Hopefully it will all become clear when the little dude joins us in the outside world.

David finally felt the baby move over the weekend! He’s been moving around for weeks but the kicks were inconsistent and I think maybe the placenta is toward my back or something. The kid is getting stronger, though, and loves to be active right at bedtime. Maybe that’s why I continue to suffer from fatigue, headaches, and SERIOUS pregnancy brain!

Because of the fatigue, headaches, pregnancy brain, and overall less patience with the world around me, I’m in hibernation mode. I’ve been making dumb mistakes and forgetting a lot of things, which is super frustrating to me. I’m an administrative assistant, so the fact that I can’t trust myself and must triple-check my work is screwing with my self-esteem! But at least I’m flighty enough to only worry about it for five minutes at a time…

That’s the latest on this pregnancy business. Any questions?

Lions and Tigers and Auras, Oh My!

A few months ago Jack started seeing an intern therapist, D, who is supervised by a licensed Marriage & Family Therapist, MR.  MR was recommended to us by a friend and has a ton of experience working with kids. We see her intern because she operates on a sliding scale and is much more affordable (since this is not covered by insurance – our HMO insurance has very limited mental health services).

So Jack meets with D every week, who then discusses his case with MR and gets signed off for her internship hours. Jack loves D and it seems like therapy in general has been really helpful to him. He told me just this week that when he got in trouble at school recently, he decided he wouldn’t punish himself and instead would sit with his feelings about it! This is HUGE.

Anyway, David took Jack to his regularly scheduled therapy appointment this week. When they got there, MR was in the waiting room and she asked, “Jack, can you see colors around me?” Jack said yes and identified two colors. MR looked at David and said she would explain more after Jack left the room. So Jack went into the office with D for his therapy session, and MR proceeded to tell David that Jack is a very special kid, has a rare ability to see auras/chakras, and that he was put on this earth for a purpose. She said she could refer us to an Intuitive who could teach Jack how to handle these abilities.

AURAS? An Intuitive? Whaaaaa? *blink blink*

What is your reaction? Ours was utter shock. We aren’t spiritual in the least and this is way out of our comfort zone!

Later that night, I casually asked Jack a bit about it (I didn’t want to make him feel weird about it OR steer the conversation) and he said he does see colors around people – but not all people. He said he didn’t know what it meant, although he said that he saw blue and green around me and that he thought that green probably meant I was interested in what other people are interested in. I asked if he’d ever talked to anybody about this before and he said no – not until yesterday when he talked to D about it. I don’t know if she brought it up or if it was on his mind because MR had asked that question.

David and I are struggling with this whole thing and are VERY skeptical. I personally don’t like the idea of taking Jack to see an Intuitive – that doesn’t seem right at 7 years old! Even if I didn’t doubt that it would be helpful, it’s definitely a spiritual approach and I want him to be old enough to think critically about these matters before he receives any sort of instruction on them. We treat religion in the same manner – beliefs are very personal and I’d like Jack to develop those on his own (as much as possible) when he is more mature and not as susceptible to suggestion.

We don’t necessarily think we should just change therapists, though – he is helped quite a bit by D and after seeing her for two months or so now, he’s developed trust and is opening up to her more. If we changed therapists that process would need to be restarted. Plus, we don’t even know if D shares this line of thinking or if it’s something she would discuss in her therapy sessions with Jack.

ne thought David and I had is that if, in fact, Jack DOES see colors, there is another possible explanation (a scientific explanation) that makes more sense to us. Jack is clearly an emotional and sensitive kid, and there is no doubt he is intuitive, as well. There is something called Emotional Synesthesia, where a person’s neurological system is wired so that their senses are crossed – and that causes a person to perceive colors when they have an emotional response to something or someone. The research on synesthesia, especially on that specific type, is still very new, and from what I can see there aren’t resources for it as of yet – just studies to validate that it’s real and trying to figure out what it means and why it occurs.

I also don’t know that it matters whether he has this or not! It doesn’t seem to be a problem for him (unless that is why he has such a difficult time dealing with other kids at school getting in trouble and his teacher being in a bad mood). There doesn’t seem to be anything we can do about it other than to be accepting. And maybe nothing needs to be done – maybe this is just a special ability that makes Jack extra awesome. ‘Cause we all know Jack is awesome!

Regardless of her years of experience in therapy, MR could be completely full of crap. Or she could be interpreting something that is actually a neurological condition in a spiritual way, rather than a scientific one. Maybe (BIG MAYBE), auras exist and Jack can see them and an Intuitive can help him leverage that ability. I really don’t know.

This is such a strange situation for us and we still haven’t gotten over the initial “Whaaaaa?” reaction. I mean, is this real life? As much as we love science fiction and fantasy, this feels a little too surreal for us.

I would love, love, love to hear additional perspectives on this! What would YOU do if your child’s therapist told you that he/she has a special ability and recommended a completely foreign path to explore it? Especially if your child says he has this ability, as well? Would you explore a spiritual situation for your child that differs wildly from your own?

Moms In Training

Running is all the rage right now. I see you all with your FitBit and RunKeeper status updates and I envy your motivation! I was a certified couch potato long before becoming a parent, and now it’s that much worse. Who has time to exercise between laundry and meals and playdates – not to mention the scads of doctor appointments now that Jack is in treatment for cancer?! Sometimes I can hardly get myself motivated to walk the block from work to Starbucks!

But there is something that has motivated me to get out and walk: a good cause! Especially for others in Jack’s situation – those dealing with life-threatening illnesses like cancer. This is why, for the second year in a row, I’m participating in the Make-a-Wish Foundation’s Walk For Wishes. Getting out of the house and walking with others who have a similar goal in mind is an amazing feeling. I can’t recommend it enough!

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Me, prepped for a fundraising 5k!

Another wonderful organization – The Leukemia & Lymphoma Society – recently sent me information on a new program they are launching. This program is tailored to moms like me – moms who want to do some good in the world while meeting other moms and doing something healthy…moms who might not be in shape but would love to participate in a 5k for a GREAT cause. Moms In Training is a flexible nine-week program that gets moms together on Saturday mornings to prepare to walk or run a 5K. And for a little extra motivation, participants can dedicate their walk to someone special, as my friend Beth did for Jack two years ago, in order to raise money for blood cancer research.

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Jack wearing his Team in Training shirt.

Moms in Training is all over the San Francisco Bay Area, with Saturday morning workouts in San Francisco, the East Bay, the North Bay, the Peninsula, the South Bay, and even down in Santa Cruz. The final event – the 5K – will take place June 22nd in Alameda, CA. Those who want to participate pay a $50 registration fee and commit to raising just $500 in exchange for amazing support and coaching from the LLS.

mom-and-kids

(c) LLS

If you aren’t located in the Bay Area, don’t fret – the New York City, Boston, Philadelphia, Atlanta, Chicago, Dallas, Seattle, and Washington DC chapters also offer the Moms in Training program!

To participate in this program, sign up by April 12th! And if you sign up, please let me know so I can help spread the word about your efforts to raise money for blood cancers while doing something healthy for yourself!

Jack will once again be an honoree, but this time for a Moms In Training team here in the Bay Area. WOO HOO! Check back for a link to their fundraising page soon!

NOTE: This is not a sponsored post and I have received no compensation from the Leukemia & Lymphoma Society or anyone else for writing about their Moms In Training program. All opinions expressed in this blog post are my own.

What To Do While You’re Waiting For Baby

56HI was chatting with a friend today about the misery of those last weeks of pregnancy. Nothing fits anymore, it takes an hour to walk a block, naps usually result in pain when you try to get up, and you are just DONE WAITING to meet that new little person who is already changing your life in drastic ways.

During the last few weeks of my pregnancy with Jack, I was horribly depressed. It was the middle of summer and my body showed no signs of preparing for labor. Eventually, at 41.5 weeks and partly because I was feeling so low, I was induced. While giving birth eliminated some of the issues I was plagued by during pregnancy, it (naturally) created other issues – mainly, everything I wanted to do had to be weighed against when my baby would next need me, which was at least hourly.

This pregnancy, I hope to enjoy my last few weeks of gestating a little more. I recommended some of these things to my friend, who is due in two days and completely ready to be done being pregnant.

  • Read books – It’s hard to concentrate on books post-baby even if you are lucky enough to find time.
  • Go to the theater – chances are you won’t be doing that for quite some time – even if you can manage to take your baby to a (loud) theater, your movie will likely be interrupted by fussing/crying, a need for a diaper change, and perhaps a need to feed the kid if you don’t feel comfortable doing so in public.
  • Get a pedicure and/or visit the salon for a haircut – the salon isn’t a place you want to drag your newborn to, and it will be hard to get away for an hour or more for a good month after the baby is born.
  • Go bra shopping – Buy a variety of sizes of supportive bras and camisoles, particularly if you are going to be nursing. Not only is it hard to get out of the house to go and try things on one the baby has arrived, chances are your breasts will start leaking all over the place when you either see another baby, hear one crying, or even just let air touch your boobs. Remember, you can send a family member or friend to return the bras that don’t fit later.
  • Go to a cafe and sit alone – Ahhhh, blessed quiet without the countdown to the next feeding flashing in the back of your head!
  • Have dinner with friends/family – Your house or theirs, it doesn’t really matter – but you will appreciate the memory of sitting down to a nice dinner when you have a baby who is going nutso during “witching hour” every night and you and your partner need to tag team in order to eat dinner.
  • Get a massage – Relaxing and soothing for your poor pregnant body. Who knows, it might even get labor started.
  • Go out to dinner with your partner or other children – Enjoy the family time when you can still put sentences together.
  • Schedule or pay bills ahead of time – Okay, this one isn’t exactly exciting, but you might forget these things while focusing on your new baby so plan ahead! This can save you some stress later.

I’m sure there are a ton of things I’m forgetting, so readers, what would you add?

Gestating Away

This pregnancy is a bit strange, if you ask me.

First of all, I forget about it sometimes. You wouldn’t think that was possible considering that I’m definitely showing and I’ve even felt the baby moving. And of course there is the nausea that hasn’t completely left me alone and also the fatigue. But still, I forget that I’m pregnant and that there will be a baby joining our family this fall.

I can’t quite believe that a baby will be joining our household this fall. It could be the stream of bad luck we’ve had over the past couple of years or my prior miscarriages or my attachment issues. I don’t know. But every time I go into the OB office and see the baby moving around on screen or hear the heartbeat, I am surprised. Really? It’s still there? This isn’t a recording?

See, within a month of discovering I was pregnant for the first time back in 2005, I found out that three others close to me were expecting, as well. As soon as I heard that, I KNEW that one of us would miscarry. It turned out two of us did. This time around I know at least six other pregnant women (and two others who just gave birth within the last month). So it’s probably not entirely strange for me to wonder if we’re all gonna make it out of this okay, right? Or maybe I’m just too morbid for my own good.

I only this week started to gain weight. I definitely look pregnant but due to nausea and getting sick with a sinus infection, I lost weight during the first trimester. As of a couple of days ago, I’d gained back some of the weight I lost and now I’m one whole pound over my pre-pregnancy weight. I’m sure things will escalate quickly from here!

So far I’ve craved cheesy potatoes, fruit smoothies, and salads. Kinda weird – especially the salad thing! I’ve had aversions to most beef (ground beef/hamburgers, of all things, excepted) and have actually preferred chicken (which, pre-pregnancy, would have always been the last thing I preferred due to it’s bland flavor). I haven’t been very good about avoiding the things I am supposed to avoid. I was so good about all of that during my first pregnancy and now I’m just like, meh, it’ll work out. I think Jack has worn out the part of my brain that worries about things that are unlikely to happen.

I feel so much crankier these days, which I don’t remember from my pregnancy with Jack. I have a lot less patience for people and animals. Unfortunately this includes Jack (HOW many times do I need to tell him not to throw himself at me and to keep his knees away from my belly?!), but the upside is that David and Jack are spending more time together and it seems to be really good for both of them. Plus, Jack is not relying on me quite so heavily, which is quite a relief. Sometimes he’ll even go and read a book instead of asking me to entertain him!

Overall being pregnant has been harder than it was eight years ago but it seems to be going by fairly quickly. I’ll be 16 weeks tomorrow! I’m surprised that at this point I’m dealing with things like restless leg syndrome when I lay down and general hip discomfort. The heartburn seems to have started early and I’m still taking frequent trips to the bathroom, which I thought would have let up by now. I’ve heard from a LOT of people that subsequent pregnancies are harder and it’s also more difficult the older you are.

That’s just not cool, man.

We’re going in for the anatomy scan on April 9 and then we should find out the gender. Hopefully then I can feel more comfortable nailing down a name – so far, even though we have two clear front runners, I still keep going through lists and throwing out ideas. To which David sighs and says, “I thought we had names. Are those out now?” Ack, I just don’t knoooow!

Making decisions is hard, yo.

So that’s the latest. I’m sure this is boring for a lot of you but I figured I should document it somehow. Hopefully I’ll get back to writing more and sleeping less now that I’m in the second trimester.

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!

Two Awesome Deals at Tea Collection

Disclosure: This post contains affiliate links, which means I may receive a commission if you click a link and make a purchase.

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TeaWearLove

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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

No IEP For Jack

David and I met with a team of teachers and specialists at Jack’s school on Tuesday to go over my request for IEP assessments for him. Even with the 504 accommodations in place, he has had increasing difficulty completing schoolwork, gets very frustrated and can’t seem to stay on track with homework, and he fights fatigue and physical discomfort constantly. From day to day, and sometimes even moment to moment, Jack can’t remember what he is supposed to be doing or how he is supposed to be doing it. This is particularly a problem in math and it often takes him an hour to do 2-3 math problems for homework, if he hasn’t been reduced to tears and stormed away from the table.

In preparation for the meeting, I printed out loads of information on learning disabilities and the effects of cancer treatment on students, including information on dyscalculia. I also had a one page write-up about Jack’s strengths and the challenges we’ve noticed. I did end up sharing the strengths/challenges page, but never got around to the other stuff because, essentially, none of it matters – Jack is doing too well in school (between 90-100% in all areas) and would be very unlikely to qualify for any special education services.

To put it more plainly, Jack’s loss of abilities/skills won’t qualify him for additional educational services unless/until he starts failing in school. He can go from being an A student to a C student and still not qualify. In fact, he needs to be 1.5-2 grade levels behind his peers in order to qualify for services under IDEA.

Furthermore, at this point in time Jack is still missing so much school that the specialists who would do the assessments would be unable to say that the issues he does have are related to learning disabilities (brought on by a health impairment) and not just due to his lack of attendance.

That’s a bit backward, if you ask me. Part of the reason he has low attendance is that he struggles so much in school already and wears himself out. If he attended school even on days he’s clearly exhausted and not up for anything, he would likely fail in his schoolwork more noticeably and thus qualify for services…but at the cost of his health.

That’s just not worth it.

So, right now, Jack won’t get an IEP. He still gets the 504 accommodations, thankfully. Some new accommodations were added, such as visual prompts to keep him on task, a tutor 2 hours a week, and inclusion in adapted PE (which isn’t limited to IEP students) once a week. He is to work on homework for no longer than 40 minutes each day regardless of how much he finishes (unless he feels like doing more).

I am conflicted about the success of the meeting. It’s hard to feel positive when it feels like things won’t improve much (if at all) as far as school goes. The struggle will still be there; we’ve just been given the OK not to fight so much.

On one hand, I’m proud of Jack for finding ways to keep up in school. He is fighting hard to be a good student and keep on learning. He has come up with creative ways to do those things. I’m in awe of him for how he is handling all the challenges he faces.

I also understand that there is limited availability for special education services. There are many other kids who need those services more than Jack does. We are very lucky that Jack isn’t struggling more than he is.

On the other hand, I wish he didn’t have to fight so hard in school when he also going through so much healthwise. I wish that the emotional impact of the extra effort he puts forth in school was taken into account. It would be nice if his personal potential was a little more important than just teaching him the bare minimum necessary to get to the next grade.

We are set to meet with the 504 team again in April to see how the accommodations are working for Jack. If things get worse, we can always ask for the IEP assessments again and maybe at that time attendance won’t play into it. There will also be different curriculum being taught at that point in time, so Jack’s academic performance may be different (especially as his chemotherapy dosages are increased again – he is currently on about 40% of what he’s supposed to be taking).

I’m still hoping to get Jack help in other ways. I’ve got an application in with our county’s Children’s Services department because Jack may qualify for occupational therapy through them. I am also getting him set up with a pediatric therapist next week, which may be helpful in reducing his stress and anxiety over school.

And, well, who knows – this could all become a non-issue in 13.5 months when Jack finishes treatment. One can hope, right?