Category Archives: Boy Genius

the problem with carrots

Every good diplomat knows that in negotiations, one can make use of carrots or sticks to bring a reluctant party to agree. Most often, carrots are quite effective, for they keep the negotiation positive, allowing both parties to be pleased in the end. Unfortunately, overuse of carrots, as we are learning, can come back to haunt the diplomat.

In our current situation, BG often has to do things he would never in a million years offer to do. He has to undergo the removal of very sticky bandages, take nasty medication orally, sit still through ultrasounds and x-rays, and very occasionally, he has to be poked by sharp needles. These activities are on few people’s lists of favorite things to do on any given day, but add nausea, general feelings of ick, and the fact that our little guy is stuck in a single room most of his days, and these activities become the fodder for daily U.N. summits.

Enter the carrot.

The most challenging issue (mostly because it happens a couple of times a day) is the taking of oral medication. There have been times when poor BG has had five or six medicine droppers plus chewable pills that he has to take in one sitting, and while most of the meds have been spruced up with some sort of corn syrup-based artificial cherry or grape flavoring, there remain a few that are nasty no matter what. The trouble is, those  meds still have to go into BG’s mouth and down to his belly. We started with chocolate chips. As you know, before this, we could count the number of times the boy had had chocolate on one hand, but when it comes to curing cancer, you’ve got to do what it takes, so chocolate it was. It would work pretty well. Then we tried M&Ms because we had a big bag, and well, why not. Soon, however, BG was introduced to the world of Lindor truffles, and before we knew it, he wanted nothing to do with the M&Ms. The only thing that would get those meds into his mouth was the shiny, crinkly wrapper of a truffle. Again, we had to get them in. You can’t just not give a kid his chemo, so if this was the particular carrot that was going to do the job, we would buy big bags of them (it doesn’t hurt that these are highly caloric, and we need the boy to gain weight too).

While chocolate was probably the most effective carrot, sticks have occasionally been necessary. Once in awhile, when things are dire, we have had to warn BG that if he doesn’t do “x” that someone may hold him down again as has happened on a couple of occasions in the past. More often than not, though, sticks are more like, if you don’t stop stalling and take your meds, I’m going to sing or play a song you don’t like or put on a wig. Yes, a wig. I got him to take a bunch of meds once because I put on an afro, which he hated. But honestly, the sticks are not as effective as the carrots typically. The carrots keep everyone happy.

Unfortunately, the carrots can get old. Even chocolate soon lost its appeal because his mouth hurt from his chemotherapy, and he was simply not interested in most food. BG already had a strong interest in medical supplies and had been given a few syringes and such for medical play. We soon realized, however, that the supplies could be powerful bargaining chips, so we and the nurses began using them. We used them to get him to take medications, to get him to succumb to dressing changes, to keep him happy when he had to go in for surgery, to encourage eating and baths–for nearly everything we needed him to do without a fuss.

Now let me insert here that the supplies have been amazing. BG is learning so much, and they are providing him such empowerment as he undergoes a series of events each day over which he has almost no control. They have become his favorite toy, and when he masters one new medical skill, he wants something more interesting, more advanced. It’s no surprise, too, that when his providers see this interest, they want to encourage it because, quite frankly, it’s all pretty positive. To have a child who can tell others what is happening to him, who is able to assist in his own care is something very special because it means he’s generally fairly happy.

Generally. Until he doesn’t get a medical supply.

I think you can guess where this is going. BG’s desire for more medical supplies has resulted in more than one fit of anger or disappointment or frustration because a nurse wasn’t willing to give him something harmful. He has begun to realize that when we have new nurses who don’t know him well, he can often swindle them into giving him many more supplies than he would normally receive. He insists on keeping each of his oral medicine syringes, and has started to make demands. Obviously, this is not acceptable. Somehow, and likely because he is ill, we let our boundaries slip, and our son is now hoarding and demanding carrots.

Last night was the capstone when one of our favorite night nurses was with us. He came in to see BG and looked through our son’s medical box to see what he might bring him as a reward for taking his medicine without any prompting. He looked and then came back awhile later and told BG, “Well, I looked and looked for something but I couldn’t find any medical supplies you didn’t have, so I brought you something else instead!” He held up a fabulous caricature he had drawn of BG. J and I were so thrilled and heartened that he had done this for him, but this soon changed as our son yelled, “NO! Take it away! I don’t want it! I don’t like it!”

I have heard that disappointment in a child’s actions is a pretty devastating feeling to endure as a parent, and J and I learned first-hand just how awful it is. When the nurse left (and he was so very gracious, and just laughed the reaction off), I’ll admit that I cried. Granted our son was tired and ready for bed, was on his last day of chemo, was struggling with so much more than the surface revealed, but in that moment, he was ungrateful, and his greed for more supplies overtook any social graces this three-year-old may have acquired. So I cried because I felt like I had failed as a parent in something J and I had done so well with prior to this experience. Our son wasn’t a kid who demanded things, who always wanted more because we had taught him to be happy with what he had, to repurpose things, and certainly not to expect that others would always come bearing gifts.

That is the tricky part. Our boy is in the hospital. He has cancer. When people come to visit, they are compelled to bring things. People send things. When nurses see a cute boy who wants to emulate them, they bring him things. Hell, we regularly bring him little gifts because something has to make this time more bearable, and little (and big) surprises have that sort of effect. While I’m not sure there is anything wrong with the people in his life wanting him to have things to keep his mind off of what is going on, the gift-giving coupled with the medical supply thing may be creating a set of unappealing expectations.

Obviously, we have decided to set some new boundaries. We’re back to medical supplies being true carrots and carrots alone. He has more than he needs in his medical box (seriously–he could draw labs, administer chemo and other IV drugs, bandage wounds, and basically start up his own oncology practice), so we’ve decided he needs to be happy with what he has, and only when he has to do something extra difficult may he have a medical supply as a reward. When gifts arrive, we’re holding onto them a bit until the right moment when they’re needed to break up the monotony of hospital time or to turn a rough day around. We’re working toward making the feeling of victory of getting through an unpleasant task reward enough as well. That takes a little doing given our recent history, but it actually works. Just today, BG remarked a few times after doing something without prompting or without fuss that he’s a grownup now. He even opted to throw out some of his overflowing medical supplies, and he gladly helped his favorite nurse prepare medical supplies for use on another patient without asking for any himself. He can get this, and I don’t think he’s too far gone for us to reinstill this sense of not constantly needing more, but it may be a challenge along the way.

As always, any of your sage wisdom is welcome here. This is new territory for us, and shaky territory at that, so we welcome ideas when it comes to maintaining boundaries in extreme circumstances such as these.

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when i’m awake at 4 a.m.

These days, when I finally go to sleep, I’m usually out. If I’m at the family guest house down the street, I sleep like a log, and wake up to the commuter train rumbling, my back screaming from hard sleep, and my gut full of anxiety–but at least that’s at 7 a.m. or so. Here in the hospital, I sleep on this pull-out chair bed, and I awake to every alarm, creak of a door, “code blue” announcement over the overhead paging system, and the nurses’ attempts at drawing my son’s blood from the tiny space between my bed and his (This annoys me to no end because when they’re really good night nurses, they just bed over the bed to reach his arm. No need to wake everyone!). This last item is something that happens every morning, and it wakes me up most of the time. This is when my mind starts racing, when I can’t go back to sleep. It’s when I start to obsess over the things I cannot change.

For the past few days, I cannot stop grieving my biological grandchildren. I know. That was a weird statement, but here’s the reality that I haven’t discussed here: after his bone marrow conditioning (read: hardcore chemo that essentially kills off all the healthy blood cells in our child’s body), our boy is going to be infertile. At the age of three, this hardly matters. I cannot imagine what this will mean to him as he is older, and I can’t imagine how we’ll tell him. When the doctor from the bone marrow team told us this bit of news, it was one of a thousand things she rattled off in the space of fifteen minutes. I remember her saying in her thick Croatian accent, “But as you know, there are many alternative means of having children.” I remember my heart breaking for my son. Over and over and over again.

Obviously, I know that there are many ways to have a child, and with the appropriate preparation, our son will accept that this is his lot (if he even wants kids), but I can’t help but be sad that I’ll never know what BG’s offspring would look like, and I can’t help but be sad that he won’t ever look into his own child’s face and see traces of himself. (How’s that for projection?)

Our research doctor, this brilliant guy who spends much of his days looking through a microscope, tells us that by the time BG is old enough to start a family, chances are science will have an answer to his infertility, that this certainly isn’t something to fret over. Maybe he’s right. I mean, he is the sort of person who knows where that is headed.

But then there is the issue, too, that maybe a person with my son’s genetic mutation shouldn’t reproduce. Maybe chances would be too high that he would have to go through the same nightmare we’re facing with his own child. Science doesn’t know this yet, but I can tell you that it has me wondering about my own genetics, whether or not this is something I somehow “gave” to him, whether it is something a future sibling of BG’s would have to worry about. It’s pointless to think about this right now. I can’t do anything about it, but still, it’s there.

These aren’t really thoughts I want to be having at 4 a.m. They aren’t thoughts I want to be having any time, but I’m learning every day that this disease we’re fighting and the treatments to save our son’s life are going to affect us forever. Sometimes it’s hard to grasp that.

 

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hard lessons

Today, I broke my son’s heart.

I know we all do this from time to time, that it’s unavoidable, but given the choice, I’d rather never do it again.

BG was playing with his medical supplies, as he often does now. He has a segment of an IV tube, and he loves to flush saline or water through it. It has valves and things he can attach, and very cool clamps that are just like the clamps on his tubes. As he was playing, I was doing something of my own, and he commented that the clamp on the play tube and the clamp on his tube were the same. “They’re both blue!” he exclaimed.

I agreed that they were, and then the nag in the back of my head pushed her way through and said, “But just remember that you only play with your play tubes. Only the nurses can handle your tubes.” It was such an off-handed remark, but I looked at him and saw the saddest expression creep over his face. His lip was quivering. He was trying desperately not to cry, and I knew I had just squashed his spirit. I tried to tell him I was sorry, told him that it was so neat the clamps were the same color, told him I knew he wouldn’t mess with his own tubes. He kept trying to fight off his tears, and as I looked right into his eyes that are made of Pacific Ocean, they started to fill and fill and fill until he fell into my arms sobbing. I held him and held him and listened to his sobs, felt his devastation that I hadn’t, for a moment, remember the kind of boy he is.

Of course my son knows not to play with his own tubes. He has been paying such close attention, and while he wants to emulate the nurses, he knows the boundaries. He knows how important it is to stick to his play tubes. 

Oh what a cad I am. I feel awful, and it teaches me a valuable lesson that the nag in my mind needs to be silenced more. At the same time, I wonder if this gave him a valuable moment to release some of the pain he has been feeling about being here. Maybe he got to let go a little. I don’t know. I just know that I don’t ever want to do that again.

Even in the hospital, in the middle of a battle with cancer, we face daily parenting struggles: how to get him to eat, how to maintain rules and boundaries, how to offer help when he needs it without coddling or causing regression, and, most of all, how not to trample his spirit in the process. It’s all hard, but sometimes, it’s just the usual hard of parenting a three-year-old.

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big guns

My baby boy starts big-time chemo today. He had a bone marrow biopsy  yesterday, and his doctor thinks this is transitioning into AML, another type of leukemia–more common but certainly not better. In fact, we’ve seen over the course of just a couple of days that it’s very aggressive. She had tears in her eyes when she spoke with us  yesterday. She told us she was worried. J and I both choked up, and seeing us do this, she did too. After all, she’s a mom, and you know when you’re a mom it’s pretty easy to feel the pain of other parents going through these things. Anyway, our doc wants to bring out the big guns now. We’re starting aggressive chemo today.

Today our boy starts a continuous infusion of poison, and right now, I’m sitting in a house eight blocks away from the hospital. J and I have started alternating nights here so that we can get some rest. Most mornings I cannot wait to go back. Today, I feel like such a coward because I just want to curl up under the covers and go to sleep for a week, for a year–until my baby is better.

It’s funny; I’ve been walking around kind of okay. He’s been responding to that last round of chemo pretty well, and mostly our days are filled with keeping him from getting bored, even laughing. He got released from his quarantine, so we’ve been able to leave the room. It’s been a kind of happy time for us in the hospital. Then two days ago, he couldn’t move his head from side to side, and he started hurting, and suddenly he looks really sick again. With this, the waves of anxiety started to return, and now I can’t shake it again. I can’t help being terrified. I want to be positive. I want to know things are going to be okay, and this not knowing, this ever-present terror of knowing there is a monster eating my boy from the inside out is so much bigger than I can handle. I’m also just really scared of what this chemo is going to do to him. I’m so scared that it’s going to dim his beautiful spark, that soon we’ll scarcely recognize him. And normally I’m so strong about all this. I have to be. But I’m starting to give under the weight of all today. Somehow, I’ve got to muster the strength to get in the shower, get ready to go, and walk those blocks back up to the hospital because my boy and my wife need me.

I need about ten thousand hugs to get me through this right now, ten thousand more for my wife, a million for my boy. This is just too fucking much.

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homesick

My son told me tonight as we were snuggling in his hospital bed reading an endless line of books, “I like home time at the hospital.” As heartbreaking as such a statement might seem, it was, in fact, a bit of a victory.

Already, this has been a very long stay at the hospital. We have been here for two weeks now, which is longer than we were home after our first stay, but during our first stay, there was this assurance that we were here for a finite amount of time, that we would be going home to continue his treatments there, and for the most part, his course of treatment would be on an outpatient basis until we came back for his transplant. This time, while I wasn’t initially prepared to be back in, we were given a minimum of three weeks to be in the hospital. Last week, we were told it would be at least another three weeks. In other words, it’s going to be awhile.

Unfortunately, BG has also been on what is called “droplets precautions,” meaning that he is essentially quarantined to his room, and any hospital employee who enters his room must wear a mask because he has rhinovirus–a.k.a. the common cold. Only, he doesn’t really have it anymore. The hospital policy is such that he is on these precautions until his discharge. We could be discharged one day and readmitted the next, and those precautions would be gone. It’s an important policy on this floor because most of the kids here are seriously immunocompromised, but it means no visiting the playroom or seeing anything outside of this small room for who knows when.

When we realized our stay was extending and might continue to extend–and that we were going to be staying in the confines of this little room–we started bringing more and more of BG’s toys and books to help him feel at home. I managed to score a couple of boxes with which to make a little kitchen for him, and my wife brought some of his kitchen supplies from home. Since he’s not attached to an IV anymore, and we want to encourage him to be up and around, we thought he would love this. Instead, his reaction upon seeing his things was to throw them all across the room and shout, “I don’t want any of my things! I don’t want my kitchen! I don’t want my books! I don’t want the fellas! (his stuffed animals)” We were pretty shocked and saddened, not understanding what was going on. Was he not liking the reminder of easier times? Did he not want to think of home? Was he actually just bored with his things? We knew quite well that he wasn’t letting us read his favorite stories, that he wasn’t interested in seeing his bears, but what was this? The kitchen tools, his play food and utensils, his play coffee maker, these are some of this very favorite things. How could he not want these?

A few minutes into this, our son opened up to us and said, “I don’t want Mommy and Mama to leave me with the nurses. I don’t want you to go home.”

You see, he thought we were bringing his toys and his clothes because we were moving him in here. We haven’t been bringing all of our things, so he put the pieces together, looking also at the fact that these nurses have been taking care of him and taking over some of our mom jobs (bringing food, giving medicine, changing bedding and sometimes diapers), and he had determined that we were going to abandon him here. And holy shit did that suck to feel that even for a moment.

We wrapped him up in our arms and told him we were not going to leave him here, that when we go home, we will all go home together, that we are only here until he feels better. We explained that we were bringing his toys so that he could feel happier and feel a little more like home, but that home is still there, and we’ll all go back to it soon. His little mouth quivered as he reassured himself, “Mommy and Mama are not going to leave me with the nurses! No!” My heart was splintered into tiny pieces.

Our boy has such a minimal understanding of what is going on. He knows he is sick, but on days like we have had this week, he doesn’t feel terrible, so he’s far more aware of his surroundings. He gets bored more easily, pushes boundaries a little more, lashes out a bit more too–and he is very aware that he is in the hospital and can’t leave, even though Mommy and Mama sometimes do. This makes it harder for him to be here. We’re trying to create a little more predictability in his days. We have created a weekly calendar so that he knows when J has to go teach and when she’ll be back, so that he knows the day I will likely take some time off and come back, so that he knows when all of us are here together because he needs to know that we are here together.

After we reassured him that day that we weren’t going anywhere, we watched our boy play in his kitchen. He cut up his wooden cutting food, made us some tomato sandwiches and added pinches of salt with his usual flair. And then he asked us to bring more. He has been letting us read his favorite stories again, letting us give him food he normally eats at home, letting us bring a little bit of home back to him.

So tonight, his love of home time, well that just melted me, stitched my broken heart back together, and left me feeling like he trusts us again because our boy knows that we will go home together. It might take awhile, but the Reproducing Genius family is not going to be leaving anyone behind. Tonight BG told me that his favorite part about staying at the hospital will be when we walk down the hall and get into the elevator to go to our car. “Then we will go home.”

Oh how I wish I could just wrap him up in a blanket and escape to our house right now, to put him in the middle of our bed with my wife and our cats and just sleep–our little family all together, safe and sound and snug in our home.

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the day it all began*

*I am reposting this from my Caring Bridge site. If you’re interested in staying on top of how things are going with our son’s health, you can access updates either through our Facebook page or directly here.

~

A month ago today our world was thrown off its axis. We were taking our son in to see the pediatrician for a reaction he was having to an antibiotic. He was on the antibiotic because during his three year well child doctor’s visit, his doc had found an ear infection. When he was sick with severe diarrhea for two full days, we stopped the antibiotic and called his doctor’s office. The nurse on call told us to keep giving it to him and give him probiotics, that he would be just fine. The problem was our boy wasn’t eating, and he wasn’t drinking enough, and he was getting sicker. We told the nurse we would not be putting him back on the antibiotics, and she made us an appointment with a doctor we had only seen once or twice. I remember being disappointed that we were seeing her because we hadn’t exactly loved her before.

When BG’s appointment time came, the doctor and nurse who were present agreed that it was the right thing to do to stop the antibiotics, The doctor was concerned. She began feeling his abdomen and stopped to comment that she could feel his spleen–and then his liver. She wrote a new prescription and then sent us for blood tests: a full CBC, electrolytes, even a test for Mono.
We continued on with our day. We were to pick J up from school, so we headed to the grocery store for a snack, and I proceeded to pick up all kinds of immune boosting supplements and herbs for BG. I wanted to work on helping him not catch so many bugs this year. I feel so silly in hindsight. No amount of elderberry was going to stop the freight train headed our way.
We got home, unpacked the car, and my phone rang. It was the doctor who had seen BG, and she had lab results. Very slowly, she began to tell me that his white blood cell count was very high. She then informed me that his platelets were very low, that he could be at risk for bleeding. She mentioned immature white blood cells, and finally she mentioned blasts. I can scarcely remember what she said next, only that the word “leukemia” came through the phone, and then “children’s hospital” and “tonight” and “oncologists.” When she asked if BG had a fever, we checked his temperature. He did. This meant he would need to go to the emergency room locally and be transported via ambulance to San Francisco. I remember asking her how to do this, and this doctor told me to pack some clothes, to pack some things for him, that we could expect to stay a few days. And that was that. Our boy ate a few pancakes, and we hit the road. We spent five hours in the emergency room in our city, and then we were put in the back of an ambulance while J followed in the car.
When we arrived at the hospital, BG was still strapped in his car seat to the gurney. I followed as the medics took us up to our floor, and when the elevators opened, and we rounded a corner, I saw the sign, “Children’s Oncology/Bone Marrow Transplant,” and I remember thinking, “That’s not for us.” We were almost immediately given chairs to sit in as three doctors came in to speak with us about what this likely was: probably leukemia, maybe a virus. You can bet we hoped for the virus. An hour or two later, after they looked at his blood, they came in with more chairs, this time in the hallway, and they confirmed they found leukemia. The fellow on staff at the time was optimistic, tossing around 90% cure rates and “ALL” and “AML.” I remember a burning heat traveling through my body up to my head as the news rolled in, and then I began shaking. My hands trembled as I signed paperwork to approve using BG’s samples for research, to approve treatment, to approve his first platelet transfusion, a spinal tap, a bone marrow biopsy, general anesthesia, a dose of chemotherapy to be injected into his spine. I couldn’t believe the blur of papers one had to sign for one’s kid to have leukemia. I must have wondered whether I could forgo the signing and just take my boy home. We didn’t want this leukemia business. We just wanted to be left alone. After all, he just had an ear infection. He was reacting to the antibiotics. He was fine!
Neither J nor I slept much that night. My brother came to hold us up and stayed throughout the next day as we experienced our first pre-op and post-op Boy Genius, and then our next sit down talk with his oncologist who shared with us that his was not a garden variety leukemia. It was, in fact, the rarest form of childhood leukemia, which would need to be treated very differently. Again, the burning heat hit my face, and the anxiety multiplied, and the tears came–again, and again, and again.
I can’t help but wonder when all of this began. We are certain he was sick when we went camping in Humboldt at the beginning of August. In fact, I think this is when he first started to feel it, for he kept saying he didn’t feel well, but there was no sign of anything wrong with him. He got pretty bruised up on that trip, and the bruises didn’t heal. But I look at the photos from this amazing summer we had, and I wonder if he was sick at the Grand Canyon, whether he was sick when we took him to the air museum, if he was sick at the beach or when we went swimming. We don’t know when this mutation was triggered, when JMML decided it was ready to wake up and rain its destruction on our son.
It’s hard to believe we have been at this for a whole month. I have learned about things I never wanted to know. I know how to put an oxygen saturation monitor on my son’s toe. I know how to apply lidocaine so that IV pokes don’t hurt so much. I regularly know his platelet and white blood count and neutrophil levels. I know how long it takes for platelets and fresh frozen plasma and red blood cells to transfuse. I know how to administer oral chemotherapy. And soon, soon I will know all the ins and outs of bone marrow transplants.
A month out, that bone marrow transplant is where all of our hope lies. As scary as it all is, that’s what is going to cure our boy and help send our world spinning right-side up again.

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collateral damage

I don’t think I mentioned yet that the night we gave BG his first dose of chemo, I also got my first call from a mom in labor. While I worried about whether or not he was going to spend the night puking (he didn’t), I also busied myself worrying about finding this young mom another doula. I never did. The very next night, a doula in charge of volunteer doula work in our area called me to ask if I could go to a birth that night. I found myself looking up and saying, “Really, universe? Fucking really?”

I have since put all my doula books up on a shelf. I packed up my binder with all my forms, put my doula bag on a shelf in the closet. I won’t be pursuing this for a long time. The clothes I have been buying to be comfortable doula work clothes are now my pediatric oncology ward clothes. They’re my walking around San Francisco clothes. My going to a blood draw knowing that we’ll be back in the hospital until goddessknowswhen waiting for a platelet transfusion clothes. They’re my meeting the entire pediatric staff of one of the nation’s leading hospitals clothes. They’re my cry myself sick and pass out from exhaustion clothes.

But they’re not doula clothes.

I can’t help but be sad about that. I was just getting started. This was going to be my thing. I was going to be a great doula. I had so many plans, had mustered up so much courage, and for what?

I have had a few different people say to me that my training will serve our family well. I’m certain it will to some extent, but isn’t any mother going to do anything she can to help her child through hospital stays and procedures and pain? It doesn’t take special training. My wife tells me I’ll come back to this. I say it too, tough I wonder whether I am really going to want to enter a hospital again after enduring the coming  year(s)? Am I going to have it in me to help people welcome their babies into the world? I don’t know right now. Fortunately, I don’t have to know now. There is no way in hell I would risk spending precious moments away from my son at this point. This is my singular focus.

For now, I’m even taking time off from my usual online work. I can’t imagine focusing on writing skills. It all seems so trivial, so banal. Who gives a shit about comma splices and thesis statements when your kid has fucking leukemia? I can’t even pretend. For the second time in three years, I’ll be taking advantage of FMLA. I’ll take my Paid Family Leave. I never imagined I would need them for this purpose. I’ll take every bit of help I can get so that I can care for my boy, but I really hoped I would need these for another baby, not for that second reason–the caring for a sick relative reason.

They say that this recovery is going to take a full year. We’ve got home chemo to build up to the transplant. We’ve got two blood draws a week as well as platelet and blood transfusions as the chemo and the cancer deplete his counts. He’ll have a bone marrow transplant when they find a match, but leading up to that, we’ll have intense in-patient chemo, and following, we’ll have up to two months of waiting to find out if it worked, waiting for his immune system to begin to develop again, and then months of his body recovering. I’m certain it’s going to be a large slice of hell, a hell for which there is no training. It’s a hell filled with anxious guts, blood running cold, walking down the street feeling like someone took a giant ice cream scoop to my center.

So really, what does it matter that I can’t be a doula when I have that ahead of me? My old hopes and dreams have been boiled down to this: I want my son to live. I want him to be healthy. I want him to grow up. I will wish on every candle and eyelash and shooting star to make these dreams come true, for they are all that matter now.

 

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of gratitude and really bad luck

Wow, you guys. I am totally awestruck, blown away at the amount of support that is coming from this community for my little boy. I am seeing your names all over BG’s Facebook page, all over our Caring Bridge site–and in droves in my PayPal account. It is magical what is happening around our boy’s illness. People are coming together from every part of our lives to help him, and every time I open up my laptop, I sit here in tears at people’s generosity and love and compassion. I don’t know how to thank you. The words just aren’t enough to convey the gratitude I have.

As many of you know from other sources by now, BG has been officially diagnosed with a very rare form of leukemia that has been chalked up to nothing more than really bad genetic luck. We learned just a few days ago in a very scary sit-down meeting in a conference room with lots of doctors that he will need a bone marrow transplant if we are to beat this. The search for a donor will begin this week, and they expect it to take six to eight weeks, during which time he will be on chemotherapy. Chemo has already started. It’s mild, but it’s working to bring his white blood cell count down. Our nurses are amazing at helping find his comfort, so he has started some morphine a few times a day. We also happen to be at a university research hospital which houses the world’s leading expert on the type of leukemia our son has. We regularly meet with so many different teams of doctors. My favorite is our research guy who has personally broken down our son’s DNA. When I get to talk to him, I go into science geek mode a little more than freaked out mom mode, and it’s neat to think about. It’s profound the impact my son’s illness may have on future children with this disease. These cases come to this hospital once every 2-5 years. He literally had a one in a million chance of having this. One in a fucking million.

Some days are a little better, others are far worse. We’re having to learn who the new hospital BG is, who the leukemia patient BG is, and then who we are as moms of a child with cancer. It’s so fucking surreal, and I find myself drifting between going about my daily parenting duties and being utterly scared out of my mind at what is to come. Tomorrow, I face my first day at this alone as my wife goes to try and figure out how to sort of teach this fall. She has to or we lose BG’s insurance. We obviously can’t do that.

I’m just drifting here. Maybe I’ll find time to write something with more clarity tomorrow. I hope I will. I’ve got a lot I need to process here.

I never imagined this would become a cancer blog. Never in my wildest dreams. Yet I cannot imagine writing this anywhere else. Does that make sense?

 

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a small update

Thank you all. The outpouring of support here is heartwarming during this surreal nightmare we’re going through. Today, we are in ICU with our boy because he has pneumonia on top of everything else. His tests yesterday had oddly inconclusive results. His oncologist (oh, fuck. fuck. fuck. He has an oncologist.) told us yesterday that it’s probably not the common childhood leukemia they thought it was, and is, perhaps, a much more rare variety. We are awaiting many more test results to find out what this is. The only comfort I take in this potential diagnosis is that this hospital is where the rare leukemia is most studied. No talk of success rates with this one though, only that it involves very aggressive chemo.

We are barely holding up. I alternate between just doing whatever it takes in the moment to keep our son comfortable to completely falling apart. J and I both fell on the floor of our room yesterday while our boy was in his surgery, and we bawled our eyes out. But crying doesn’t feel good, and honestly, neither does looking much farther than the next five minutes. We have to get him past the pneumonia first. Then we can deal with the cancer. (Oh, hell. I just wrote it, didn’t I?)

So many of you have offered to help, and I so appreciate it. If you live in our area, or you want to send something (as some of you suggested), you can email me at reproducinggenius at gmail dot com about it. I may try to come up with a PayPal donation link. I so don’t want to ask for money, but even a few dollars can help us with various costs we’re accruing as we go through this. More than anything, you can keep us in your thoughts, and keep providing these lovely comments here. It really does mean a lot to have this support.

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a cruel, cruel turn

I am writing this from the children’s oncology wing of a major university hospital. It seems my wife and I have just become the mothers of a Boy Genius with leukemia. We are trying not to fall apart as he receives platelet transfusions and goes in for a bone marrow biopsy and lies here with tubes all in his arms. We are trying to figure out how we don’t end up in total ruin. We are trying to figure out how to stay strong because our boy needs us.

How the fuck did this happen to us?

I’m sure I will be writing more. We will be here for at least a month. I will need something to do with my hands.

I am terrified. I am angry. I am shaking and numb.

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