in case you’re wondering

I know there are a number of people reading here who didn’t before, people who know me in real life and who may not be accustomed to me talking about things of this nature, so feel free to skip over talk of cycles and ovulation, though do know that that’s what I’ll be talking about primarily here for awhile.

 

Did I mention I’m charting? I am. Except that I can’t seem to remember to take my temperature when I wake up in the morning, so I’m really just charting when I take an ovulation test, when it’s positive, and when my monthly cycle begins. Part of me thinks I ought to be doing more, and part of me says fuck it. It’s too much to think about. The good news: I’m ovulating regularly, normally, like clockwork on the fifteenth day of my cycle–even though my eggs are probably pickled in too much wine. Fertility Friend guesses that I’ll be ovulating in the first week of June (the month we think we may start this process in earnest). That’s not much time for me to get my act together, but I think I’d better. Anyway, in case you were wondering, that’s where I stand.

Oh, and we moved. And the new place, well, it’s good. We even put our rocking chair in our bedroom. My wife thinks it seems like a good place to rock a newborn. I agree.

Any magic you’ve got to send to us regarding an easy go of this would be welcome.

In the meantime, I’m out here, drifting on the waves of grief. It still pretty much sucks with every breath I draw in.

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pops it is

I thank you all for your thoughtful responses to my question in my last post. It helps to see other people’s perspectives, particularly the concerns, and it was all good fodder for discussion for J and I. We are about 95% certain we are going to go with our old donor, Pops.

The first consideration, of course, was the medical matter, and because BG’s oncologist told us this was not a hereditary issue (and because she knows this disease better than almost anyone else in the world), I trust her. We had a lengthy discussion with her about it, and she didn’t know what she would do either, though she never once suggested we use someone else, only that we make the decision that felt right to us knowing that even the mutation that made BG more at risk for JMML was not hereditary. I imagine we’re always going to be a little gun shy about any child’s health, but this sort of lightning really doesn’t strike twice. It would be statistically pretty much impossible, and while there are always other cancers and childhood illnesses, I have a fair amount of certainty we’ll not see JMML in our own family ever again.

It occurred to me as we entertained using another donor that we would be opening ourselves up to a whole new set of odds, unknown genetics, etc. We wouldn’t change donors to have a known donor. We don’t necessarily want that, and in BG’s case, it wouldn’t have helped anyway (any parent can only even be a half match for a child who needs bone marrow, for example, and a half match really isn’t good enough). So that issue is sort of irrelevant to us too.

With the health matters out of the way, the biggest factors are psychological, emotional, sentimental. We always wanted to meet a future sibling of BG’s–long before leukemia ever became a part of our lives. We still want to meet that sibling with similar genetics. He or she will be a new person, a new soul, and an individual all his/her own. The thing that was so great about BG was that he was utterly himself. J and I didn’t get in the way of that. If he was going to be into kitchen appliances, well then we let him. We gave him an old CD player so that he could have control over his own music. We let him pick out clothes that he liked. We valued his opinion and his sense of self, and we encouraged him to be him, even when that happened to be so different from what we expected. We would do that for any child because it’s how we parent. That fear of transferring hopes and dreams we had for BG to another child is something people have encouraged us to consider, but our real hopes and dreams for BG were for him to live a healthy, happy, long life. We would have those dreams for any child. We’re certainly not going to put a blender in our baby’s crib to encourage a love of appliances, but you can bet we’ll cook with another child, and if he or she likes it, great. We’ll read to another child, and if he or she likes the same books, that will be wonderful; if not, we’ll get to explore something new. We’ve definitely thought about all of this, and what it comes down to is that we want to keep being parents, and we want to keep being the same kind of parents because, well, that’s what parents do. And we want to be parents of BG’s full sibling first and maybe someone not at all related to him later.

So with our decision mostly made, it seems we’re heading in the direction of TTC again. I have an early morning alarm set and a basal thermometer at my bedside. I even have a Fertility Friend app on my phone (I feel like I’m trying to get knocked up in a different century!). Sometime in the coming few months, I’ll put away the wine (mostly) taper off the caffeine (mostly) and even move my body a little in hopes of creating a happy environment for some happy little cells to grow. Honestly, most days it’s hard to imagine, and I don’t know how it’s going to be to go through the roller coaster of this process. I hope it’s healing. I hope it’s a short journey. In the meantime, I’m trying to be a bit selfish, hoping to find myself beneath the heaps and heaps of grief that sit on me each day so that I’ve got something to offer a new child, my wife, and, yes, even myself.

 

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take two?

This week, I visited Fertility Friend for the first time in four years. I opened up a chart and plotted some details about my cycle, and then I closed it up quickly because I felt a little bit guilty and a little bit scared.

You see, J and I had planned to start trying again once BG was healthy. We had, in fact, been thinking in this direction before BG got sick too, but we obviously had to table it. We didn’t want anything to distract us from the important task of caring for our son through his disease.

Now that we are where we are–grieving mothers without a child–we find ourselves knowing with a great deal of certainty that we need to have another child. Neither of us can imagine living our lives without a little one to look after. We miss reading stories, singing songs, even worrying about what our little guy might be getting into. Our lives are far too quiet. It’s too easy to go places. Our schedules are far too bare. Our clothes are much too free of grimy hand prints and bits of kid food. The back seats of our cars may as well be caverns.

But in our minds, these things are supposed to be, and before long, when we’re ready, we’ll be working on creating the next love of our lives.

This community will understand our unusual predicament as we explore this possibility. We had one donor, and he’s still available. Between my genes and his, we had a really beautiful child. But we also had a child with a very rare disease, and while there is no known hereditary link, there is still this question about whether we ought to use our old donor or go with a new one.

On one side, there is the sentimental pull to have a child who will resemble our BG, who will maybe sound like him or have some similar mannerisms. On the other is this idea that maybe we shouldn’t go there again. Maybe there is some weird thing that happened between my DNA and the donor’s.

We have talked to our son’s oncologist about this. She is, after all, one of the leading experts on the disease he had. However, she found the question just as difficult as we do. She sees these cases of this disease, and it’s so very, very rare that she just doesn’t see them in the same family. She also studies it endlessly in the lab, and there are no inherited traits. It’s a genetic anomaly. It’s a case of really bad luck. We have asked other professionals in this field too, and their general hunch is that, no, we shouldn’t. One doctor asked, “Why would you?”

The thing is, no one would ask a straight couple whether they were going to seek a sperm or egg donor for any subsequent children. If they were going to have more children, they would simply have more children because that’s what people do. And they have reminders in their new children of the child who died.

I don’t know what the right answer is. I know I awoke from a nap today to find my wife perusing the listings at our sperm bank, and I just found myself rejecting the donor she had pulled up because I couldn’t imagine anything else.

We’ve got time to figure it out. I’m not ready yet to be pregnant, but I think in a few months’ time, I will be ready, and we are going to have to figure it out.

So tell me, friends, what would you do?

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the unimaginable

As many of you know, our beloved Boy Genius lost his battle with leukemia last week–in fact, a week ago today. We are shattered and scarcely know what to do with our days now that the rhythm of caring for a boy is gone. I hope to write here again; in fact, I plan to spend a lot of time writing in the coming months as we try to piece our hearts back together. For now, I just want to thank all of you for all the support you have offered us. This community has played a huge part in keeping us afloat over the past six months. Your messages of remembrance this week have been heartbreakingly beautiful. We love you all. Thank you for being here. xo T and J

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our own little iceman

Four years ago this week, my wife and I were finishing grades, and we were sharing our apartment with a storage dewar filled with liquid nitrogen and a tiny vial of cells. We waited and waited for just the right moment. I had no hope left that we would be making a baby, but when my wife said she thought it was time, I dug deep for that hope again and we urged those cells toward what we hoped would be a waiting, fertile egg. It turns out it worked because on New Year’s Eve, I got my first “Pregnant” on a pregnancy test, and 38 weeks later, I was cradling our pudgy Baby Genius in my arms.

This week, four years later, we are waiting again with frozen cells to create new life. Our son’s bone marrow donor underwent surgery a week ago, and the hematologists here have frozen those cells in anticipation of our son’s transplant tomorrow. It took some time for me to have faith in this process, in the fact that when most people get fresh cells, BG was going to get cryopreserved cells because an infection delayed his transplant by a week. But I keep reminding myself that our son is a child of modern science. Cryopreserved cells, while foreign to most, are familiar to us. We know they work because we have  little boy to show for it.

The subject of our son’s origins have come up from time to time in the context of his illness. When we learned of his diagnosis, there was a fair amount of disappointment that 1) we didn’t know the donor, and 2) there weren’t any siblings. I never imagined when we chose a no-identity-release donor that this would be an issue, and I allows myself to fret about this for about ten seconds. I contacted the sperm bank to ask if they would contact the donor. I was shocked when they actually did try–multiple times–but the guy didn’t call back, and while I hoped he would, I respected that he didn’t. And, as it turns out, there was no need. The donor would have only had a chance at being a half-match. Our best bet would have been a sibling, and that didn’t exist, but when it came to looking for a donor for BG, the odds were finally in our favor. Our decision to choose a donor so similar in ethnic background to J’s (and to mine) ensured that we had literally dozens of good potential matches.

More important than that, we have one exceptional match: the young woman who volunteered to go through surgery to save our son’s life. What is lovely, and I know this is something our community will appreciate uniquely, is that at present, BG has his sperm donor’s blood type. Following his transplant, as his cells recover and his new marrow starts making new red blood cells, our son will have the bone marrow donor’s blood type, which happens to be the same as my wife’s. It seems only fitting.

Tomorrow will be a new birthday for Boy Genius. From now on, we’ll celebrate both the day he made his first appearance in the outside world and the day he received a renewal of his life. I can’t wait to celebrate September 5th and December 20th for years to come.

I never imagined when I started this blog so long ago that I would go from writing about trying to conceive our first child to trying to save our first child’s life, but here I am. It’s hard, harder than anything I’ve ever done, but we’re doing it.

——————-

I’m sure I’ll make an appearance here in another month or so. In the meantime, if you want to follow BG’s journey through leukemia and back, you can read along at C is for Crocodile.

 

 

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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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i know it’s wrong, but…

This is the first year since I started blogging way back in 2007 (wow) that I haven’t participated in NaBloPoMo. Boo. I know I have a pretty big excuse and all, but I’m big on tradition, and this is one of my favorite traditions I participate in for myself. Alas, I think I’ll have to take a year off and give myself a break. I’m not superwoman.

I have, however, taught my son how to swear. This is after a couple of years nagging my wife to curb her own sailor’s mouth (she does have an excuse, as she was in the Navy, and they practically make you sign an oath to drop the f-bomb every few words). I once slipped while driving and muttered, “Fuck!” after which, BG proceeded to chant, “Fuck, fuck, fuck!” and giggle maniacally. We have since done really well, though. When one of us has slipped, and he has expressed interest, we’ll say something like, “Oh, Mommy said the wrong word! That’s so silly! That wasn’t a word. I meant to say cluck instead!” Believe it or not, it usually works, mostly because he likes rhyming and wordplay so much.

Recently, though, I seem to be saying “damnit” a lot, and once in awhile I’ll catch myself and use the b-list expletive “dangit”–I suppose in an attempt to keep my kid from picking up anything too offensive. Recently, I dropped “Oh dangit,” in a moment of frustration, and BG laughed. He then proceeded to say, “Oh dangit! Oh damnit!” Uncontrollable boy giggles ensued. He giggled and giggled and said it again. He says it almost daily in the most adorable voice, followed by his contagious rolling giggles. It’s hilarious. I have to admit, I kind of love it. The good news is that he’s pretty aware that he can only say it around us, and honestly, what harm is “damnit” anyway? Maybe a kid fighting cancer deserves to have a few choice words at his disposal.

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