This is a poem that one of Jack’s friend’s mom emailed to me one morning. We were dealing with his health problems and she wanted to provide some encouragement. I’m sharing it with her permission:
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.
Yesterday involved a lot of things. Too many things, which ended up overwhelming me.
These things included:
- Cleaning up the bloody nose Jack had when he awoke. And then worrying if this was a sign of low platelets (it wasn’t).
- Drawing blood to determine ANC (not related to the bloody nose) and running the vials to the lab.
- Getting Jack out the door on time to make it to school (put your shoes on, take your meds, brush your teeth, do you need a jacket, don’t forget your backpack). It was dicey for a bit because he couldn’t put two words together and walked around like a drunk man.
- Calling the vet to make an appointment for my cat who has a skin issue that just won’t go away, likely due to a thyroid problem.
- Trying to remove the nail polish from Halloween and being left with blue-stained nails.
- Calling the Department of Child Support Services to determine the status of my account, which has seen no activity since July. Apparently the DCSS has requested that the DMV suspend Jack’s dad’s driver’s license.
- Notifying Jack’s dad and step-mom about the license suspension. In case they missed the memo. And worrying about the (almost for certain) blow-back that will likely occur.
- Worrying about leaving the country (and Jack) in a couple of weeks.
- Calling and leaving a message for Jack’s oncology case manager to ask about the results of the labs, which showed that the acidosis had gotten WORSE despite the changes in medication that happened two weeks ago. The case manager was not working today.
- Contacting Jack’s pediatrician in an attempt to understand why Jack’s acidosis has gotten worse instead of better and find out next steps. Apparently the next step may be consulting with a nephrologist.
- Letting the home tutor know we might not need him but, hey, it’s early in the week so ask us again in a day or two because Jack hasn’t made it to school more than two days in any given week over the last three months.
- My day job, but from home.
- Setting out the rest of Jack’s pills for the week and, then, ordering more.
That was all capped off by a full blown anxiety attack. ‘Cause this was all too much for one person to handle on any day and there will just be more tomorrow.
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!
Yesterday I met with Jack’s principal and the district nurse to update our 504 plan. We are getting access to a home educator three hours per week to work with Jack when he can’t make it to school. I have to give HUGE props to Jack’s teacher – she has really stepped up to get us support and arranged this meeting in the first place. I can’t even express my overwhelming gratitude toward her! I’ve been much too occupied with trying to get Jack’s health stabilized and was just going to wait on the school issue (especially since he was keeping up anyway). But it was done for me! People can be really amazing!
I brought a letter with me from our oncology office regarding the need for IEP assessment, as well. Back in the spring when I requested an IEP process be started, I apparently did not do it in the exact right way because the district ignored it and had the school work with us on a 504 plan only. I didn’t fully understand the difference between IEP and 504 at the time, so I didn’t push the issue. Since then, I’ve learned a lot more about supporting kids with cancer in school and seen that even this far out, new side effects can pop up. At Camp Okizu earlier this year it was made clear that IEPs are really important for kids with cancer because even if they aren’t showing any significant issues right now, late-term effects are very common. Baseline testing can be really, really valuable when/if problems pop up later.
So when Jack was hospitalized in August, I brought up the issue with the hospital social worker and she drafted a beautiful letter for us! I’ve been sitting on the letter because Jack has barely been IN school anyway – it could always come later, I thought.
The principal took the letter in stride, but the district nurse was clearly flustered by it. Immediately reasons why she thinks we don’t need an IEP came pouring forth. I don’t completely disagree with her – Jack has to be in school to get services and he’s barely been there at all right now. Plus, the IEP requires a lot of assessments and that can be strenuous.
But then the district nurse said, “Well, treatment has come a LONG way! Most kids don’t have any lasting effects!”
And then I kind of wanted to punch her.
I wanted to tell her about how few new treatments have been approved for use in children and that oncologists are still using the same drugs developed between 1950-1970. In fact, the FDA has only approved ONE new drug exclusively for pediatric patients in the last 20 years – despite the fact that the prevalence of childhood cancer has risen 20% in that same time frame*.
I wanted to tell her that she’s wrong – in fact, two thirds of kids will have long-lasting chronic conditions that are caused by the very treatment saving their lives.
I wanted to point out that while more kids are surviving cancer, side effects from treatment are still a huge challenge. Quality of life for childhood cancer survivors needs a lot of improvement.
I didn’t say those things, but I did tell her that Jack had been screened for sensory issues and further testing was recommended. I informed her that we’ve already seen an impact on his abilities in math and physical education. I told her we need a baseline in case he has complications later.
“Well, we don’t want to push him physically when he is going through treatment,” she said.
Ugh. First, you don’t need to tell ME that. Second, that’s not what this is about, lady! It’s about preventing further decline and ensuring the best possible future for Jack.
The nurse did point out that an IEP does not provide a home educator, which makes the 504 more beneficial at this time. But the home educator was apparently a special benefit anyway and it ends January 7th. Because of that, we agreed to stick with the 504 for now and then meet again to reassess in January (which happens to work anyway – not much to be done about any of this during the holidays).
I came out of the meeting with mixed feelings. I am happy that the school is supporting Jack with the 504 plan and there was absolutely no hesitation as far as that was concerned. I’m a bit concerned about future struggles related to the IEP and assessments, though. I’ve heard a lot of negative things from other parents trying to get IEPs for their kids and based on this interaction, I’m just not confident that this will be easy.
At least I’m getting better at dealing with hard things, right?
Later in the afternoon I picked Jack up from school. One of his classmates came up to ask me if Jack really did have cancer and how he got it. I told her yes, he does, and we don’t know how he got it – sometimes people just get cancer. She seemed like she had more questions, but Jack started pulling on my arm and she walked away.
I hope we didn’t scare her. I wanted to give her a better answer but I didn’t have one. As much as I’d like to deny the reality of what we are living with, sugarcoating it isn’t the right answer.
* Source: Unsung Heroes by the American Childhood Cancer Association, published 2011. (This link opens a PPT file.)
Q. How did you guys find out Jack had Leukemia?
A. Starting around Christmas in 2011 when Jack was five and a half years old, he started feeling unwell and had strange symptoms that came and went. One minute he would be running around happy as a clam and the next he would be curled on the couch complaining of aching bones. He also had a low grade fever, fatigue, headaches, unusual emotional outbursts, and I noticed a loss of dexterity when he was playing with Legos. This went on for over a week before we decided it wasn’t a flu, growing pains, or him trying to get out of school. I took him to see a pediatrician, thinking it might be Lyme Disease or Mono. Upon examination he looked fine to the doctor – just a bit pale – and the doc thought he was just anemic. We decided to double check on his iron levels with a blood test. That blood test ended up showing that he had large amounts of unusual white blood cells, which indicated Leukemia, and he started treatment the next day.
Q. What kind of Leukemia does he have?
A. Leukemia is a cancer of the blood. Jack’s immune system just happened to go a little wonky and started producing too many immature white blood cells – called lymphoblasts – that crowded out the normal cells and made it impossible for him to fight off illness. This specific type of cancer is called Pre-B Acute Lymphoblastic Leukemia (or ALL for short). ALL is the most common type of Leukemia among children.
Q. What caused Jack’s Leukemia?
A. We don’t know. In some kids this type of cancer can be genetic but this is not the case with Jack. He was never exposed to unusual doses of radiation or other chemicals. Apparently we all make cancer cells at some point, but most of those cells just get flushed out and never get a chance to become a problem. Jack’s cancer cells ended up sticking around and multiplying instead.
Q. Is he done with chemo? How long does treatment last?
A. Treatment for male children with ALL lasts about 3.5 years and it goes in three phases. Jack is currently in the third phase, called Maintenance, where no cancer cells can be measured in his blood but he must stay on lower doses of chemotherapy in order to make sure he doesn’t relapse. If all goes well, he is expected to be done with treatment in March of 2015.
Q. How often does he go into the hospital for treatment?
A. He goes in every month for an infusion of Vincristine, which is one type of chemotherapy administered through an IV that is hooked up to a Broviac catheter (which stays in his chest throughout treatment). Every three months he also gets a lumbar puncture and a chemotherapy drug called Methrotrexate is put into his spine to eliminate any possible cancer cells that could be hiding in his spinal fluid. He recently started going in monthly for a nebulizer treatment that will help protect him from pneumonia and he has an eye exam every six weeks to ensure that his spinal fluid pressure hasn’t damaged his optic nerve.
Q. Does he receive any treatments at home?
A. Yes, he takes anywhere from 2-5 different types of pills on any given day, including chemotherapy, steroids, antibiotics, and antacids. We also have to maintain his Broviac catheter to make sure it stays infection-free and he doesn’t develop a clot that closes the line – this requires daily flush of an anti-clotting medication called Heparin and weekly changes of the dressing. We also draw blood through the catheter at least once a month, and sometimes several times in a week.
Q. Can he go to school?
A. Yes, if his ANC is above 500 and he feels well enough to attend. We have a 504 Plan and an IEP in place to accommodate his unique educational needs.
Q. What is ANC?
A. ANC is a measurement of the immune system’s ability to fight infection. It’s basically a count of how infection-fighting white blood cells are present in a blood sample. Healthy individuals (who are not immune-suppressed) typically have an ANC over 1,500 but it’s a good day if Jack’s ANC is between 500 and 1,000.
If Jack’s ANC goes below 500, he is considered “neutropenic” and has virtually no ability to fight illness. He has to be taken off chemotherapy and isolated from people who might pass on a bug. If he develops a fever while the ANC is under 500, he has to be hospitalized and given antibiotics because it’s assumed he’s developed an infection.
Q. How are you guys coping?
A. That depends on the day. Cancer has definitely changed how we live our life and we are constantly on the watch for any issues that could arise with Jack. He misses school often due to treatment appointments or side effects. We are chronically stressed and tired and worried. But we are getting through it somehow. We do have a lot of people cheering Jack on and that helps.
Q. Do you struggle financially?
A. Yes, although it’s not due to the cost of treatment (which is thankfully mostly covered by insurance). Finances are more challenging because we have increased expenses when we have to board our dog during a hospitalization or order take-out multiple times a week or get away for a weekend to avoid burnout, and it’s also very difficult to manage finances when your brain is on overload. I never forgot to pay a bill until cancer came into our lives.
Q. How is Jack doing?
A. For the most part he is doing better than we are mentally. He doesn’t know enough to be aware that this could all end badly, although he does know that cancer is serious. He has tolerated the chemotherapy treatment very well for the most part and has avoided a lot of the issues other kids have with the treatment regimen. You generally can’t tell by looking at him that he is fighting cancer – he has a full head of hair and a cheerful, quirky personality.
He has recently hit a rough patch with his health and we are still trying to navigate that and figure out what is causing it. Our oncology team has been adjusting his medications to try to increase his ANC and running a lot of tests. This is somewhat unusual at this stage in treatment, so it has us all worried.
Q. Do the doctors know if he’s going to be cured?
A. They assume (based on research) that he will be cured because over 90% of children with ALL are cured with this treatment regimen. More specifically, he is a standard-risk patient because he has responded as expected to treatment and has no chromosomal abnormalities, so the chances that he will be cured are between 90-95%.
It’s important to note that “cured” means that there are no signs of the cancer returning for five years after treatment ends; this is referred to as Event-Free Survival (EFS). And while it’s unlikely that he will experience relapse, he has a slightly higher risk of developing other cancers.
Q. Will he have lasting effects?
A. Most likely, yes. Some of his major organs (heart, lungs, liver, kidneys) will probably be negatively impacted long-term by the chemotherapy treatments and Jack will need to be screened annually for the rest of his life because he is now more likely to develop other types of cancer. Kids who are treated with chemotherapy in the spine are particularly at risk for learning disabilities related to memory, processing speed, and multitasking – we’ve already seen these effects in Jack. He may also encounter fertility issues later in life.
Q. What can we do to help?
A. Above all, I urge you to donate money and/or time to finding better treatments for childhood cancer. Childhood cancer only receives 4% of federal funding, even though cancer is the most common non-violent cause of death in children in the United States. That means that 96% of funding relies on charitable organizations and individuals. You can make a huge difference in so many lives by donating to childhood cancer research.
If you are more interested in helping our family specifically, you can check out our Cancer Fighting Wishlist or email me directly at crystal (at) ewokmama [dot] com.
Thanks for taking the time to read this and to follow our story. If you have any additional questions, feel free to ask – it’s highly likely I’ve forgotten something here!
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.
Jack is home from school again. He’s in pain again. But the pain is now in his lower back. He’s also complained of pain in his elbows and his lower abdomen. He walks hunched over like an old man and Tylenol doesn’t help. (He can’t have ibuprofen since it’s a blood thinner.)
I’ve called the oncology clinic several times over the last few weeks. They don’t know why he puked last Friday. He never pukes. They don’t know why he’s still in pain – it can’t be the steroids because he had his last dose of those ten days ago. They don’t know why he was having chest pain a couple of weeks ago. They are “puzzled.”
I don’t know how others would feel in my position, but I don’t want my child’s oncology team to be “puzzled” by his symptoms.
My seven-year-old is walking around hunched over in pain – and has been for over a week – and no one is giving us any indication of WHY or what to do about it. (Well, they’ve suggested warm baths and warm compresses. Maybe your seven-year-old will tolerate those, but mine won’t.)
I just want my baby to feel better. I want to know he is getting better. I don’t want to worry about relapse.
For only the second time in three weeks (if I’m remembering correctly – and I may not be!), Jack is at school. It feels like a major accomplishment! Just yesterday he was complaining about abdominal pain and difficulty breathing, but today he made it to school – on time, even!
Oh, happy day!
But – I.am.tired.
It’s hard enough to shut off worry when things are going as planned, but when they aren’t? Oh my goodness! I feel the worry like it’s a ton of bricks on my back and there is no break from carrying the load. I get slower every day, worn down, and dried out. Sleep isn’t restful and my head hurts constantly. Things that usually bring me joy are less satisfying. My tolerance for additional difficulty is NIL.
I was seriously depressed yesterday. On Monday Jack’s labs came back and were just as dismal as they were last week, even though he hadn’t had the antibiotic (that was supposedly causing the low counts) for ten days prior to that. When I called to speak with the case manager about it and ask when we’d get the test back that would tell us if the chemotherapy drug 6mp was the culprit, we discovered that the test hadn’t been done after all.
That freaking test takes a couple WEEKS to get back results so you can imagine how maddening that is. Jack’s been feeling like crap and had low counts for almost two months now and we have only guesses as to why and they FORGOT to take a vial of blood to send in a pretty important test!!!
GAH! It’s maddening!
Yesterday he continued to hunch over a bit while walking due to pain in his lower abdomen and ran out of energy when we ventured out to the Halloween store. I felt helpless. I emailed his doctor pleading for some sort of idea as to how to help Jack…and how to help myself.
If Jack feels better, I can feel better.
Thankfully, Jack is feeling better enough to attend school today and that helps things. It’s risky, but so necessary. I asked him to stay away from sick kids and I am crossing my fingers that he doesn’t catch anything. Hope, hope, hope. He has big ol’ circles under his eyes (9.5 hours of sleep isn’t enough, apparently), but it’s so important for him to see his peers and get to school at least once in a while! And it’s good for me to be at work and do my thing instead of being a hovering worry-wart constantly taking his temperature. Normalcy is important.
So I’m not as depressed as I was yesterday, but I’m still not super chipper. I guess I’ve hit upon a pocket of grief that I’d been storing somewhere inside of me. It started to come out at Type A Conference when I attended the “We Still Blog” session and heard Julia read her post Landing Into a New Life. I wasn’t just in tears, I was holding back sobs. I mumbled something at Julia about what that post did to me and she said, “I wrote that for you” (people like me, I think she meant), which undid the last string holding me together. My grief started to overflow and I couldn’t focus on the keynote following Julia’s reading. I fled the room and headed to the bar for a stiff drink.
Grief and tears leaked out in bits and spurts all night and, thankfully, I was surrounded by amazing women who hugged me and comforted me (those wonderful ladies deserve a post to themselves!) and got me through it. Thank goodness!
The outpouring of my grief caught me by surprise, though, and I guess I just haven’t quite put a lid on it yet. It’s been taking over my thoughts and stifling my words. I’m not sure what to do about it, so I’m just sitting back, letting it run its course, and hoping I come out the other side feeling more peaceful.
I need peace - even if it’s just for a little bit, and even if it doesn’t last.
“How’s Jack doing?”
I’ve been asked this question at least five times so far today. Each time I give the same answer in the same way, “Yeah…well, eh, mostly. He will be okay, I think. He’s just not feeling well after chemo yesterday.”
He was doing just fine last night. In fact, he was very energetic and LOUD, humming or squawking while playing with his Legos. It was overwhelming to me, as I’d just come home from my trip to Type A in Atlanta. I wanted quiet.
This morning, though, it was too quiet. Jack crawled on the floor from his bedroom to the living room. He laid down on the couch while eating breakfast and I covered him with a blanket while pushing play on iTunes so he could listen to The Postal Service at low volume. He ate his waffle slowly, and afterward he leaned on me to get to the bathroom to halfheartedly brush his teeth. Then I picked him up and carried him back out to the couch.
He talked in hushed tones and complained of stomach pain. I smoothed his hair away from his face as I took his temperature – 98.0 degrees. I asked if he wanted to try to go to school for a bit and see if he felt better. His big brown eyes squinted up at me and he said, “I just don’t have any energy, Mom.”
“Okay, honey. I’ll tell David to come home from work. You just rest,” I replied.
I looked at our finances while I waited for David to come home from work. I wondered if we could somehow make it work on one salary so that I could stay home full time with Jack. I worried this was a pattern that would not go away. I added and subtracted and, with a knot in my stomach, acknowledged that it was impossible – we have too much debt and a large mortgage payment.
I called the clinic to get confirmation of Jack’s ANC. The nurse told me it was sitting at 690, which is fairly decent but not great. She asked how he was doing and then said, “Call us if he isn’t feeling better by the end of the week.”
I called the school and answered the question again. Then I drove to work, where I told a few more people that Jack wasn’t feeling well. I got a call from my sister in the afternoon, and I spoke to one of the care providers at Jack’s after-school program – both asked and I explained in that halting way.
Jack’s okay…mostly. I think. We’ll see.