These entries appeared on a fiction blog on the dates noted. To read the entries chronological order, you begin from the bottom.
My love, my daughter
Sunday, January 17, 2010, 3:14:21 PM
On Biology, Destiny, and Motherly Love
January 31, 2010 in Christina, Therapy | Leave a comment
Dr. Stewart phones to tell us the donor, a young woman by the name of Jo, wants to meet us. She imparts, among other things, a most incredible piece of information. As if we hadn’t heard, she punctuates the silence once more with her statement that the woman had had an abortion, or rather thought she’d had a termination, but the doctor had removed the embryo and frozen it!
My head begins to throb. This sounds like science fiction. It must be impossible to save an embryo from an abortion. I can’t grasp the feasibility of such a thing. But the doctor continues as if this is an ordinary thing, although it surely must be quite extraordinary. Oddly enough, after the doctor once more encourages me to recall any further details about the doctor who’d done the in vitro, she becomes rather abrupt. She gives me Jo’s number, saying it’s up to us to make contact, and hangs up.
There is such a sense of unreality about all of this. My worries are so nebulous and diffuse, and yet so strong, they almost have a life of their own. So many ramifications to consider, Michael and I attempt to discuss it but we don’t know where to begin.
It is clear to us that Dr. Stewart is actively investigating the situation. Understandable since the doctor broke the law by not getting permission from either us or the donor, and also committed a serious ethical breach. But it has struck us that we are in danger of becoming the center of some media horror show if any investigation leads to our personal information being leaked. Christy could be written up in some newspaper as a freak! They could turn us all into freaks!
And then this donor. We are not sure how she feels about this child she didn’t want. How would Christy feel if she ever found out she had been aborted? Not to be contemplated! We must protect her. Although this Jo may seem like a decent person to have become a transplant donor, we honestly don’t know what kind of person she really is or what she may want. My fear has so many tentacles, it seems as if I’ve been living in limbo forever with the fear of being strangled by it all.
The morning’s winter sun belies my gloomy thoughts, as I pick up the phone the next day to contact Jo who turns out to be a 28-year-old single woman living in Manhattan. We set up a meeting at a Starbuck’s near her apartment, where we can sit in a corner and be private. No one ever comes to wait on you at Starbuck’s, and in this instance, this is an advantage. We settle on Saturday afternoon at 3 pm. She says she’ll phone us on her cellphone as soon as she gets there, but it turns out to be unnecessary.
Jo hones right in on us. Looking around, I realize we are the only couple there, with the other tables mostly filled with larger groups or people alone. As she approaches us, I am stunned to see a woman who looks exactly as I would envision a grownup Christy. She makes me feel my own conceit in ever having seen myself in Christy’s face. There can be no doubt this young woman must be Christy’s biological mother. The resemblance startles me.
Michael stands up and asks if she’d like something to drink or eat. She declines and sits. She seems nervous and guarded. How very young and pretty she is. She could be a teenager in her jeans and sweater.
A feeling of awkwardness descends over the table, and we sit silently. Then Jo asks how Christina is doing. I guess Dr. Bennett must have told her Christina’s name. I wonder what else she knows. Grabbing this opening, we fall into a discussion on her recovery.
Michael and I express our gratitude at her agreeing to be a donor. It was an admirable selfless act, and I was quite honestly impressed with her decision to undergo the surgery. Michael tells her that she has saved Christy’s life. How ironic. She obviously had no idea to whom she was donating her bone marrow.
Suddenly Jo says that she would like to see Christina but she is not sure whether she is ready to meet her. I am perplexed by this ambivalent pronouncement, but it occurs to me that I could show her a picture. I open my bag and pull out my billfold, into which I’d stuck a few pictures of Christina. They are all from before her chemo, when she still had all her lovely blonde hair. Blonde curls that fall exactly like Jo’s, swirling around her shoulders.
She grabs them hungrily, holding the pictures as if they are fragile, carefully shuffling them, and I can see from her expression that the strong resemblance has softened something in her. I want to ask her how she feels now about knowing she has a child, but I am afraid to. Michael and I have discussed this incessantly, going in circles with it, and finally just letting it go for the time being. Michael feels that even if Jo decided she wanted the child at this point, no one would consider uprooting her.
On the other hand, we have no idea whether she wants any relationship with her, or how we feel about this except that we are wary. Paramount is the issue of Christy knowing the truth. We now live with a secret, a gnawing aching secret that could hurt our baby. Oh, God!
Christy finding out that she is not our daughter just isn’t right. She is our daughter! In every way that counts! And I can’t lose sight of that no matter how this goes.
From Jo’s expression, I suspect she wants reassurance about our dedication to Christy. Yet this seems strange considering the circumstances. It occurs to me to perhaps offer an olive branch of sorts. I tell her that I wouldn’t mind her being introduced to Christy as her donor.
I can’t read her expression, but she says she doesn’t know whether she can handle being introduced to Christina, even as her donor. Then I hear her saying that although she is not ready to talk to her, she would like to see her. Not just in a picture, she explains. Then everything becomes fraught with exigency as Jo blurts out that Christy should be told the truth. We are horrified!
Michael and I are united in our determination to shelter Christy; we both feel she must not be told anything. I remonstrate with Jo as calmly as I can that Christy is much too vulnerable with her illness and certainly too young to understand something even I cannot fully comprehend. You can’t shatter her security on the shifting ground of this revelation, I protest.
Jo becomes animated and insistent as she maintains that if we don’t tell her, she will find out anyway in some way and that will be worse. She is wild-eyed and insistent that Christina will learn the truth someday anyway. Anyway, she counters, adopted children are always told they’re adopted.
I am appalled at this analogy. I emphasize that that is a different situation and even then, adopted children cannot look for birth mothers until they’re eighteen. And vice versa.
She will hate all of us, Jo retorts, breaking in! Isn’t it clear from our meeting here that secrets are always ferreted out, she hisses urgently. She’ll hate us all for not having told her, she insists. Then she catches herself and takes a deep breath. You can’t keep secrets in this world, she flatly maintains.
How, I demand to know, do you expect an eight-year-old to take in this particular secret when we adults are still having difficulty coming to terms with it? Perhaps someday she will have to know, but not any day soon, I rejoin. She is too young to be told.
I can see that this young woman has no notion of how eight-year-olds think or what they can handle.
Jo repeats her insistence that Christy must be told. It would be wrong to do otherwise, she argues.
Michael, absorbed in taking in our exchange, suddenly leans across the little table, looking at her gently and asks her why she is so insistent that Christy learn everything now.
Looking from me to Michael as if she is gulping water from a wave that’s been dumped over her, she takes a seemingly difficult deep breath and looks at us almost as if begging us to accept her assertion. In a strangled voice, she manages to whisper that lies are always found out.
Why do you keep calling it a lie, he demands, when none of us knew anything before last week?
But we know now, she replies almost savagely.
How, I ask her, would you feel about everyone knowing all the details about this situation? She instantly loses all color, becoming pale as water. She stutters, struggling to get out her answer. It’s obvious she hasn’t thought this through.
Don’t you get it, Michael patiently tries to explain, that the truth coming out doesn’t mean just about Christy, but all of it. As it is, we don’t know whether we can contain this.
Suddenly I see what seems like desperation glinting from her eyes. She looks wildly around and then lowers her voice, repeating that Christy should be told the truth. She insists that doesn’t mean anyone else need know anything. Then her eyes grow wide, and she blurts out that no one at home knows she had an abortion nine years ago.
Looking from Michael to me and back again, she realizes she may have said more than she intended. The silence grows. Does she feel guilty? Angry? I don’t know, and suddenly I don’t care. Christy will always be my baby!
It is as if for me a light has been turned on, and our meeting is further proof that Christy was meant for us, and we are her real parents, whatever real means. It is clear that Jo is not prepared to raise any child. And, I suspect, no inclination to raise this child. But the worrisome fact remains that we still do not know whether she wants a relationship with Christy. Any kind of relationship.
And what do we want?
Sunday, January 17, 2010, 3:14:21 PM | christinastory
Christy’s recovery was continuing to impress everyone on the transplant team, and everything was going so well—until this morning. That was when my world came crashing down to leave me teetering on a cliff with nowhere to go but down. I can’t comprehend the bizarre situation we find ourselves in. What anathema!
One of the doctors on the transplant team phoned, and Michael and I happened to simultaneously pick up, he upstairs and I already in the kitchen preparing breakfast. Dr. Stewart told us to both stay on the line and apologized for speaking to us by phone and then took pains to explain why we were having a phone conference rather than in-person. The gist seemed to be that she lived in Philadelphia and had been in New York just for our case.
Why she was bothering to tell us all this, I couldn’t fathom. I can’t even recall whether she was a hematologist, oncologist or what, but meanwhile she quite inexplicably begins relating to us an incredible supposition.
It must have been at the juncture when she asserted that Christy was not our child that I became rendered prostrate with disbelief. I contemplate hanging up if I can manage to move, but instead challenge her with how she even got our DNA. She replied she had our blood from the initial matching tests, and had enough for DNA testing. What, I screamed, gave her the right to do DNA testing on us!? She sighed and countered with the fact that we had signed releases for all the doctors to do whatever testing they deemed necessary. In fact, she declared, she really hadn’t wanted to do it until she realized that she had to resolve her niggling feeling.
What the hell do I care about her niggling feelings!
Because she’s a doctor, I think maybe I should give her some leeway. But I can’t restrain myself. I immediately demand to know how she could possibly come up with something so outrageous as to suggest that I didn’t give birth when I most definitively did give birth. Unbelievable!
What in the world gives her the right to suggest that Christy isn’t mine! I delivered my baby in the hospital. I saw her before she was taken away. And this wasn’t an adoption. What in the world could this woman be blathering about?
From a fog, I hear Michael with a rather sardonic tone, grumble that he doesn’t find her nonsense amusing at all. He addresses her as if speaking to an imbecile how everyone comments about how much Christy looks like me. So, isn’t that proof of a sort? Of course she’s our daughter.
This Dr Stewart must have mixed up the blood samples. It’s a lucky thing everything came out all right and Christy is doing well, because this woman seems totally off the wall.
She suddenly becomes conciliatory in tone, apologizing for shocking us. She requests that we please bear with her and listen to the rest of what she has to say. Michael reluctantly shuts up although I can feel his anger as a living thing breathing through the phone.
When she asks me to confirm that I’d had in vitro fertilization, I do but maintain that the embryos were ours. In fact, we’d had four embryos frozen. To our misfortune, the procedure had failed three times but then on the fourth try, I miraculously became pregnant. Everyone knew the result was our beautiful Christina.
Dr. Stewart goes on to explain that as the one on the team who dealt with matching up donor and patient, she had done more extensive tests than usual. Why, Michael demands to know, would she do more tests than usual?
Before he can interrupt again with more than a syllable, she cuts in with determination to continue what feels to me like a horror story. She says she noticed something that drew her attention, and goes on to elucidate that the match was so perfect she was curious about whether donor and patient were related. Isn’t it supposed to be a good match, a perfect match?
I query, and all those perfect matches are not related.
Yes, she admits, but this was different. She pauses and then takes pains to slowly and patiently articulate that it is all too complex to explicate for us. Anyway, she goes on, she decided to scrutinize her data more carefully and do further testing because it was so unusual to find what she deemed to be an unique match in some way, although I can’t make sense of it.
She can’t keep the triumph out of her voice, when she announces that after DNA testing, the results of which just came back, despite a seemingly paradoxical situation, it is clear to her that the donor is in fact Christy’s mother!
I must have let out a moan as I drop the phone and the next thing I hear is Michael at my side. He picks up the phone and demands to know how such a thing could even be possible. The doctor points out that it is illegal to use donated embryos without permission on the part of both the donor and recipient. But such things have been known to happen. When she questions him about my doctor at the time, he admits the doctor left town a year later and we never heard from him again. He gives her his name.
Suddenly a surge brings me the energy to pull Michael’s arm with the phone toward me. I speak more loudly than I had intended, but I have to ask her whether the donor, who by this time, we realize must be a young woman, is aware of what she is telling us. Dr. Stewart says not yet.
The implication is clear. She feels there must be disclosure on both sides, she tells us. She will be phoning this woman to tell her what she’s discovered. How, I wonder, can this donor have a child, give it away and then become her donor for a bone marrow transplant? But, no, that couldn’t be. I’m confused. We were talking about embryos.
But I gave birth. Did this woman also have frozen embryos? Was she married? Does she have children? How could this be possible? Miraculously, I became pregnant.
I am becoming more confused than angry, more saddened than mystified.
But the frightening thought that swiftly replaces that is an emerging panic that she might have rights, might want her child, our child, might—I can’t imagine what. Michael must have read my mind because he asks the doctor whether telling the woman would not wreak havoc and further confusion, as well be terribly stressful for Christy.
The doctor tells us to calm down. She proceeds in her cool, composed voice to tell us that she feels ethically obligated to tell both parties of her findings—contrary to an adoption situation. In this case, she clarifies, there must have been illegal procedures on the part of at least one doctor and perhaps more, and she feels it is important to get all the facts. As for Christy, she emphasizes that she doesn’t need to know anything—yet.
The question she wants answered is whether we ever gave permission to accept anyone else’s embryo. Of course not, we both exclaim! Indeed, how can it be that I didn’t receive our frozen embryo? This must be a mistake. She should run all her tests again. She got it wrong!
Dr. Stewart hangs up with the promise to get back to us soon.
I am clutching Michael, and I have no shame in admitting that my tears could have watered the plants. Could it be that the doctor is right? How? I can’t imagine our life without Christy. That was all I’d thought about for months, but I never imagined anything like this could threaten our family. Never in a million years could I have imagined this scenario!
I am in a full-blown panic attack about losing my baby. My husband and I are locked in an embrace so tight I can hardly catch my breath, but I don’t care.
Later, as we go over everything that was said, we resolve to talk to my father or brother or both about the legalities of what has been conveyed to us, but I can barely get my mind around any of it. How could Christy not be my baby? Of course she’s my child. Of course. I can’t get that out of my head. We have to get advice.
Tomorrow, I tell Michael. Today, tonight, we need to try to swallow this bitter pill while praying it isn’t true. Perhaps we can spit it out on further reflection. But shuddering deep down, I speculate on whether the doctor would have phoned if she was not sure.
Friday, January 01, 2010, 6:54:20 PM | christinastory
This has become the most wonderful Christmas of my life. Christina went through her bone marrow transplant like the brave little warrior she is, and the doctors have declared how absolutely impressed they are with how well she is responding to the treatment. We are ecstatic! It looks as if she is going to be victorious over her disease!
The staff is still quite protective of her, not wanting her getting overexcited, and so only permits family members to visit for now. Gowns and masks still have to be donned, but that doesn’t dampen our spirits at all.
Dr. Schumann again informs us of the team’s pronouncement of her miraculous progress. They all think our baby has beat the leukemia and that is cause for tremendous elation. What a week!
Within a few days, my daughter’s hospital room was transformed from a center of medical activity filled with the amazing transplant team to a place of recovery. Everything else in my head has been jettisoned. The rest of the world will have to merely float on by and be dealt with later. At the moment I just want to sit on my mat at home and do some of my yoga breathing.
After continuing to sleep in Christy’s room for several days after the transplant, I was convinced by my husband to begin going home with him every evening. Actually, it is a relief, taking one more step back to normal. I also take comfort in being with Michael in the evenings and especially being back in our bed at home. We go visit our daughter every morning to spend the day together with her.
I can’t believe a new year is beginning, but this year, New Year’s will have a special significance, as I see it as a bright new beginning. We’ll spend a quiet New Year’s at home with my parents and in-laws, and some other family and a few friends probably dropping in later to welcome in the New Year with us. We will toast the best news we’ve had in a long time.
My father-in-law told me he brought some nice bottles of something or other with him from California, and Michael dropped into a store this morning to pick up some champagne. He says for him this celebration is akin to bloodletting, but I don’t like to reflect on blood right now.
Instead, I look forward to having a quiet dinner, which thank heavens I will not be cooking. Someday in the immediate future, I am sure I must get reacquainted with my kitchen. But I’m grateful to have this respite to be with our baby in the hospital while she needs me.
But there is a different brighter feeling in me these past few days, a sort of lightening, and I cannot believe that I actually look forward to seeing everyone. It is a time for celebrating. And for remembering to have tremendous gratitude for our good fortune. The relief coursing through me is like honey overflowing. I wish for such gladness for everyone, as well as for a brilliant future for my baby. Yes, and I truly pray for peace on Earth and good cheer, health and happiness for everyone.
Days Before Surgery
Monday, December 28, 2009, 6:56:28 PM | christinastory
Things are charging ahead so swiftly and inexorably that I want to grasp something tightly to ensure my stability and keep myself centered. I am trying not to be worried and frightened. But I am worried and frightened. I endeavor to keep it hidden so Christy can’t smell my fear. I strive to bestow absolute faith in her to believe everything will be all right and that this procedure will make her well. In actuality, these days most children do recover. If only I could wrest some guarantee.
I need to talk about so much! What to do, what to feel, what to say when friends call, some of whom remember to ask about Christy and some who forget or are embarrassed.
Michael has taken two weeks off from work. He says he will ask for more time if necessary. This moves me. I was so concerned he wouldn’t be able to deal with this. Yes, what lies before us seems like a very fragile bridge we must cross. But we are now able to lean on one another, and how grateful I am for that. It may make for adequate ballast.
Meanwhile I try to submerge thoughts of my mother-in-law’s recent erratic behavior. It has been quite disturbing and inexplicable until, interestingly, a surprising source came up with a compelling explanation for it.
Linda casually mentioned something about not needing her room done while visiting as she is very neat. I thought that was a bit strange, but anyway I totally forgot about it.
Lena, my cleaning woman, went in to dust and vacuum, and do the bathroom. A lovely middle-aged Serbian widow, she informs me she discovered what looks to her like an extraordinarily large stash of medicine, and she feels I should know. Lena has noticed a few things, I am sure. Since Linda is out with my mother, I decide to take a look. Oxycontin, Vicodin, Ambien! I am shocked. Picking up each bottle, what strikes me is that each has a different doctor’s name on the label. I wonder how in the world she managed to obtain them.
I am relieved that my parents are coming over to stay at my house, probably for the rest of the holiday season. So far, there has been little cheer this year. With my parents’ support, perhaps we can infuse the house with more of the Christmas spirit. It occurs to me that we’ve not yet bought a Christmas tree or put up any decorations. I bought a few presents online, and that was it. My most profound wish is for Christy to receive a lifesaving transplant.
Which brings me to my major news! Dr. Schumann phoned to let us know that the donor tested perfect and is willing. The team wants to proceed as expeditiously as possible. Surgery is scheduled within the week! I wonder whether the dizzying pace signals that the donor lives in the area. As far as I’m concerned, it can only be another miracle.
We’re given an appointment to come to the hospital the next day to meet with the entire transplant team. It’s also necessary to bring Christy for some pre-transplant tests. These are necessary in order to go forward with the transplant; they must make sure her body can withstand the procedure. While Christy is led off for testing, Michael and I are directed to an office.
As we sit, waiting to meet the transplant team, I look at my husband’s profile and recall meeting him. His dazzling smile had an immediate impact on me. More importantly, he made me feel as if I were the only person on the planet. He took me home from that party, insisting I have dinner with him the following evening. That turned into many evenings, and then entire weekends, and although I was never one to rush things, we were married within a year. Given the singles jungle of Manhattan, I still can’t get over my good fortune.
Today, it all seems aeons ago, and ostensibly it is. But he is still my best dream.
I am jolted into the present as the transplant team comes in. I cannot believe so many people are to be involved in the care of my little girl. Aside from six doctors and the head nurse; we’re told there are more nurses, a social worker, physical therapist, child psychologist, and I can’t remember who else. We are first introduced to the Director of the Bone Marrow/Stem Cell Transplant Program who’s also a Professor of Medicine. I keep hearing the words hematology, oncology, and “professor of medicine” being thrown about and of course our own Dr. Schumann, our pediatric oncologist, is our liaison. I am so nervous I am sure I will not remember one single name!
Christy is to be admitted to the hospital in only a day or two, and her procedure will take place after about two days in the hospital. The main concern they tell us is the high level of chemo they will give her, which is necessary but can result in side effects and make her more vulnerable to disease since it compromises her immune system. Her hospital room will become a sterile environment. I am additionally surprised to learn that they do the transplant in the room. Only the harvesting is done in an operating room.
I’ll stay with Christy in her room at the hospital. They’ll bring in a cot for me, and Michael will come in every day; donning gown and mask to visit. There is no way I can leave my eight-year old to face the toughest fight of her life alone. It’s scary enough for her to be a hospital patient. There is nothing more crucial than doing whatever has to be done for my baby in this fight against her leukemia.
After voicing a great deal of optimism, the team finally leaves, only Dr. Schumann remaining with us. Someone brings in Christy who with a sigh stumbles into her daddy’s outstretched arms, as he envelopes her in a gentle hug.
Dr. Schumann motions Christy to a seat at a little table set up in a corner. I am surprised to behold the long-legged lithe physician fold herself into one of the little chairs and conjure a couple of hand puppets. She gives one to Christy, who promptly names her Emma after her best friend. The doctor uses another puppet named Max to talk to “Emma” about what Christy will go through when she is admitted to the hospital. Max instructs Emma to tell Christy not to be afraid. He says that even if the transplant makes her feel a little sicker, it’s really going to make her feel much better. Only maybe not right away. Max tells Emma that Christy is very brave to have a transplant, and explains that during the transplant and for a while after Christy will feel like she has flu. The funny-faced puppet intones she will feel better before she can count to one million! Christy is enchanted with the puppets but believe me as soon as we get home she’ll want her stuffed bear Oscar.
My thoughts go to the anonymous donor and the selflessness involved in the giving. It is such a miracle that someone could and would give the gift of life, and it can’t be more special than at this time of year. I wish I could thank the donor in person. Dr. Schumann said I could write a note that would be delivered, but I am not to reveal my name.
That evening, I decide to write the letter so it can be delivered by Christmas. Thanks to my parents, a glittering Christmas tree is now reigning gloriously in our living room, and Christy radiates joy at the sight of it. And of course Christina spies the gaily wrapped gifts with her name on them. So late in the night, I sit on the rug across from the tree, leaning back against a sofa. Michael has left the note to me, saying I speak for both of us, although he will add a line or two. I know I can never adequately put to words all our feelings and thoughts of gratitude, but I try.
Tuesday, December 08, 2009, 6:35:00 PM | christinastory
My in-laws arrived the day before Thanksgiving, the holiday soon taking on a kaleidoscopic blur with my mother, sister, and everybody else in and out of the kitchen, pitching in to put together a rather elaborate Thanksgiving dinner. Our table practically groaned under the weight of our feast but eighteen people graced our gathering. Aside from our parents and my two grandmothers, there were my siblings, their kids and a fiancé or two. My brother is 5 years older and my sister 2½, and they both had their children young, so Christy has no cousins near her age.
Nevertheless, they are incredibly sweet to her. All four of her cousins always find time to spend with her and are constantly giving her presents, holiday or not. Her whole face lights up with all the attention they lavish on her. She loves them all. All in all, the holiday worked out much better than I could have hoped for.
Friday, Linda and Doug went to the mall with my husband chauffeuring and offering suggestions for their shopping. His parents certainly love to shop. I know at some level they understand their granddaughter is seriously ill, and yet they go about pretending everything is all right. I’m still not sure how they manage this, but at the same time I tacitly do not acknowledge their pretense. It’s incredible how we all do this dance without missing a step.
Saturday afternoon, we drove into Manhattan to savor that special excitement Manhattan exudes this time of year. We admired the giant beautifully decorated tree at Rockefeller Center, and Michael held Christy up to let her see the whirling skaters below on the rink. However, she soon became tired, the heavy holiday crowd taking a toll on her. We crossed Fifth Avenue to admire the windows at Saks and meanwhile I called a car service to take Christy home with me. More than ready for an afternoon nap, she put her head in my lap for the trip home.
The plan was for Michael to take his parents around to see more of the dazzling Christmas decorations, and then drop them off at “21” where they were my parents’ guests for dinner and then they were off to see “Jersey Boys.” Broadway shows are just not on our agenda these days.
Sunday evening, Michael’s father returned to Los Angeles to finish teaching the semester while Linda remained with us. He will fly back a few days before Christmas.
In the meantime, I don’t know how I will keep my sanity through New Year’s. Keeping quiet about the possible donor match is even more challenging with the strain of facing family across the table. Linda has also become a trying houseguest with her many moods.
To be honest, she does have her problems. She was diagnosed with breast cancer about three years ago, and had both chemo and radiation treatment. She said she is cured, yet every time I see her she seems edgy. And her erratic conversations utterly drain me.
Our bedroom has become my refuge these days, as I count the days until the house is clear of everyone but us once more. Oh, I am trying. I really am. I must be more tolerant. Christy is Linda’s and Doug’s only grandchild and they dearly love her, no matter how they may behave. I have to remember that different people react differently.
Speaking of reaction, I suppose I should be jumping up and down right now. Dr. Schumann phoned yesterday to tell us that the donor has agreed to the surgery. But she cautioned us that the tests are not yet complete. We are closer; I am keeping my fingers crossed. And my knees are sore from all the praying I’ve been doing lately.
Admittedly it appears that things may be getting better. Nevertheless, I have too many days filled with the anguish of waiting and worrying. Wishing the days away is sinful—it’s like throwing away part of your life.
Tomorrow afternoon my mother is coming over and I am going to talk to her about the possible donor. I really need her support. It’s time. Mom is such an understanding, empathetic person. She always listens without judgment (she is nicer than I am). If I tell her not to tell anyone else, she won’t. That is, except for my dad, but I don’t want her to discuss it with anyone else, even my brother who’s a partner in my dad’s law firm. Much as I love my brother and sister, Michael and I both feel strongly about too many people being with us in this vulnerable place where the expectations are so high. If this deal evaporates, total desolation will set in; I think I’m afraid of their pity at our disappointment. Once the surgery is actually scheduled, we’ll tell everybody.
Michael agrees and in fact declared that his parents shouldn’t be told yet. We don’t voice it aloud but I think we’re both worried about their becoming long-term boarders. An alarming prospect.
Yesterday Michael said something quite extraordinary. While we were discussing I don’t remember what, as a complete non sequitor, he threw out the comment that his mother has become a different person. He says he doesn’t recall her being so short-tempered. We are cautiously exploring the possibility she is ill again. A scary thought. I was surprised that he had noticed. Perhaps he has become worried as well.
In light of that, what happened this evening frightened me very much, and I am debating whether to tell Michael. He’s spending the evening in the study working on a project on the computer.
Linda said she wanted to give Christy her bath and put her to bed. I said I’d come up to give her a goodnight kiss. As I am climbing the stairs, I hear my daughter shrieking. I practically leap into the bathroom to find my mother-in-law half-drenched, woozily trying to get herself up from the floor, half-draped over the tub. She must have tripped or something, almost falling completely into the bathtub. Fortunately she hadn’t landed on Christy!
My baby is crying hysterically. I grab a large bath towel and scoop her up in my arms, rocking her pitifully thin body, trying to calm her. I kept murmuring that everything is all right as I carry her to her room, making soothing noises as I get her into pajamas. I sit holding her on the bed, and begin to sing about Miss Lucy who tried to teach her turtle Tiny Tim how to swim, except that the turtle drinks up all the water and eats up all the soap. This usually gets her giggling. This time, it got the beginning of a little smile.
When she asks me whether grammy is sick. I quietly say that maybe her grandmother needs to rest, and reminded her that she also needs to get to sleep. I quietly begin to sing one of her favorite songs. She softly adds her voice to “If I Had a Hammer.” After Christy drifts off to sleep about halfway through the song, I think about checking on Linda to see how she’s doing after her inadvertent drenching.
I am surprised to find her still in the bathroom sitting on the commode, head bowed and muttering. If I didn’t know better, I would think she was drunk. Since she’d only imbibed two glasses of wine at dinner, her behavior is baffling. I begin to contemplate what it could be like to have another family member ill.
Bone Marrow Donor Match Found
Sunday, November 15, 2009, 7:52:40 PM | christinastory
It’s still so baffling to me how one event turns your entire world upside down. When my daughter’s leukemia was diagnosed over six months ago, my husband and I were so devastated, and now, during this most difficult year of my life, while my little girl fights for her life, one phone call sets the universe right. Christy’s pediatric oncologist phones to tell me that a donor for a bone marrow transplant has been found! My hand shakes as I phone my husband at work.
Something inside just lightened like magic. My emotions are so fragile lately, as if I’m whirling on a merry-go-round while that brass ring keeps spinning away from me. It’s been so difficult to tamp down my fear, but I try to keep faith that my daughter will recover. It’s too painful to believe otherwise. A donor match!
Following my therapist’s advice, I’ve been discussing my feelings with my husband. The fear, the apprehension, and how I so often feel overwhelmed by it all. We have gotten closer in the past week, and when Michael takes me in his arms and tries to comfort me, it really helps. We’ve somehow moved to a deeper place in our relationship, and it’s become clear how much I need to be close to him. And maybe I’d forgotten that he needs me too.
We make an appointment to talk to the doctor about the registry match. As usual, one of the aides immediately takes Christy by the hand to go check out the toys and games set out in a corner. Our daughter sits down at a little table to join two other kids who are already engrossed with some sort of very large wooden puzzle that is beginning to show signs of becoming a huge dinosaur.
Michael and I are not kept waiting long, and that’s good because my heart’s beating so loudly surely everyone can hear it. I grab Michael’s hand and squeeze hard. He squeezes back.
Dr. Schumann confirms that a donor has been found in the registry, but adds that the donor cannot be contacted until additional tests have been performed. I can hardly contain myself. Yes, yes! Christy will be healthy again! We can’t lose her, please, God! I keep these thoughts to myself.
The doctor then brings us up short with the announcement that the donor in question has the right to not agree to the surgery. The bone marrow transplant match is not a fait accompli? Oh, no! This was like being struck down by a 10-ton truck. What did she mean? We sat stunned.
Why, I demanded, would a person place themselves on the registry list in the first place if they’re going to back out? The doctor has no answer. Michael and I exchange looks. Taking a deep breath, I lean slightly toward my husband, murmuring we have to keep believing this is going to work out. He looks pained but places his arm around my shoulder in response.
The doctor wisely changes the direction of our discussion by going into the details of the procedure. She also goes over how we can prepare Christy, making it clear that the best way to reassure her is to explain what is going to happen in a simple straightforward way understandable to a child. She suggests using a story.
We are fortunate to have such a considerate doctor managing our daughter’s care. She reassures me constantly. And, truly, some days I feel I need reassurance every second.
After our meeting, Michael and I quietly talk about what Dr. Schumann told us. We make the decision not to say anything more about the bone marrow transplant surgery until (not unless, but until) it is scheduled. If the donor backs out of the surgery, I can’t bear the added weight of dealing with family fallout, especially from Michael’s mother, a breast cancer survivor. She is so emotional anyway.
We go out to find out our little girl, looking very drowsy, burrowed in an armchair with the Velveteen Rabbit on her lap; it’s one of her favorites. It was one of my favorites too when I was her age. We gather her up to go home.
It is startling to realize we spent an entire hour with the doctor. Generous with her time as well as sympathetic, we can’t forget she is trying her best for us, and we have no sane choice but to take one day at a time. My daily prayer is that Christy will get well very soon.
An eight-year-old cannot possibly comprehend very much about her illness beyond the pain and exhaustion. Christy is unhappy to not be able to go to school and see her friends very often or participate in much of anything simply because she lacks the energy. She continually wants to know when she is going to feel better. I hate lying, but what do I say? I don’t want to frighten her, either.
The following evening, taking the doctor’s advice, we decide to talk to our baby about the procedure. Michael carries her up to bed and I climb in with her, cuddling her while Michael sits at the side of the bed. We explain to her that her body is like a garden. She’s always liked to help me with the garden in the backyard. I tell her that sometimes bad things get into the dirt in the garden, and when that happens, the garden can become sick, and the fruits and vegetables can’t grow. But if the gardener removes the sick dirt and puts in new healthy dirt, hearty plants and beautiful flowers can grow.
We tell her that the medicines, chemotherapy and radiation are used to take away sick marrow, so that there will be room for healthy marrow—like the good dirt. Michael softly strokes her arm as he explains that the doctor will give her healthy marrow from a donor. A donor who’s the right match, I emphasize.
After you receive the healthy marrow, my husband says, smiling at her, your blood cells will grow, and you will begin to feel good, not tired any more. She just smiles sweetly at us, nods and murmurs okay as she drifts off to sleep. This is all she can take for now. Michael lifts her to tuck her under the covers.
We gently kiss her good night, leaving the nightlight on and Oscar, her stuffed brown bear with the green bow, tucked in next to her.
Thursday, October 22, 2009, 3:21:46 PM | christinastory
The house is quiet. Michael is out of town on business and Christina is in bed. She had her bath and then we read together from one of her favorite books, Charlotte’s Web. I love sharing books with her and seeing her face light up when we come to what she calls the “good parts.” I notice how thin she is these days, and she can’t afford to lose weight. Tonight she hardly ate any dinner. I tempted her with macaroni and cheese, but she seemed to play with it more than anything else. Some days I have slightly more success.
After she fell asleep, I came to the library to begin working on a piece for my editor, but I couldn’t seem to focus. Instead, my mind drifts back to Christy. I happen to look at the many photo albums sitting on a bookshelf, and pull out the large one sitting next to our wedding album. It was begun during my pregnancy, when Michael decided to record my “growth.” I was horrified. I can’t stand looking fat even if it’s because of being pregnant, much as I had prayed for it! Michael laughed. Truly, when he looked at me, I didn’t feel fat. I felt loved. What memories come back to me at odd moments!
I think back to how we had been trying to have a baby and, after over a year without conceiving, we began going to fertility specialists. I was almost 32 and thought we could still have at least two kids. Now I can’t even remember how many different doctors we consulted or all the procedures I went through. I was beginning to consider adoption, although I had a feeling Michael wouldn’t go for it, so I didn’t bring it up. Sadly, I did manage to get pregnant twice but almost immediately miscarried. We told no one. Somehow six years went by.
Then, when I least expected it, I became pregnant again and, this time, it took. We were ecstatic when I reached the third month! Michael and I told everyone and then went out for a romantic dinner at an elegant restaurant and began once more talking about our dreams for the future. Starting a family in the house with many rooms and no children.
I was a high-risk patient to begin with, and by this time I was going on 38. I was referred to a high-risk specialist. My fingers were crossed. Considering all my trouble conceiving, the doctors were amazed that my pregnancy went so well.
My child’s birth was a truly miraculous event for us. We had already decided to name our baby girl Christina. Looking at my newborn, it felt right. I had a baby nurse at home for a couple of weeks, and my mother came over almost everyday to advise, coach and encourage. Mom was a pro. After all, Christy is her fifth grandchild! Every time she came, she would cook while my dad kept her company in the kitchen. Before they’d drive, a trip of about half an hour, she’d filled the freezer with enough main dishes to take us through the end of the year!
I was busier than I had ever been. I even managed to write a couple of short pieces. Unbelievably, I played hostess to Michael’s parents over the Christmas holiday. They were overjoyed at finally having a grandchild, but they had to return to LA before the New Year. His father Doug retired from his job in finance and teaches at one of the colleges in the area. Their visit seemed to go well except that his mother Linda still appeared slightly miffed that I ignored her invitation to call her “Mom.” I don’t think I ever can. We promised to visit the following summer.
The way I went on about my baby, you would think no one ever had a child before. My mother would just laugh whenever she heard me and said I had been just as amazing as a baby. Well, maybe every mother feels that way but I appreciate how easy Christy has been. She did everything early. Christy began walking at a year. She was so alert and interested in everything.
In fact, I began reading to her from the time she was born despite people scoffing. One of our neighbors said I should know better considering the baby couldn’t understand anything. I retorted that the only way she’d learn to understand was by talking to her, reading to her, and later taking the time to explain whatever she wanted to know. Well, I didn’t let those dunderheads bother me. My child thrived and I felt so good about everything. Oh, I need to feel that way again!
I was so proud when Christy began talking early too. The first time Michael came home and she toddled over to him loudly proclaiming “da da” and pointing her little finger, he broke out into the widest grin and scooped her up. She giggled when he swung her around. She always loved that, or when he put her on his shoulders and she would grab hold of his ears. He never seemed to mind.
There were so many wonderful times, and how gratifying to see my husband snapping pictures of his little girl every step of the way. She learned to grin into the camera whenever he pointed it at her, whether she was on a swing or on the new tricycle he bought her when she was four. There’s a picture of her blowing out the candles of every birthday cake of her life. We celebrated Christy’s eighth birthday party at home on the Sunday after. While I began arranging her gifts on the table for her, I noticed that Michael had not taken out his camera.
I quietly pulled him into the library tell him he should get his camera. Honestly I don’t know how it happened but I began to cry. I said I didn’t care whether she had any hair, or was thin and pale. Where the words were coming from, I don’t know, but before I could say any more he put his arms around me and I was literally crying on his shoulder. He kept pulling me tighter and whispering softly. It felt so good to be held. When I finally lifted my head I was shocked to find tears in his eyes too. Our eyes locked, and so much flowed between us, it was as if a cyst had been lanced and was flowing clear. I don’t know how long we stood there. It felt like one of the longest encounters we’d had in a long time and yet the shortest too. We didn’t have to articulate our hopes and fears. We knew our demons well by now. He gave me a soft kiss and went to get his camera.
Sometimes you need more than prayer
Saturday, October 17, 2009, 7:23:13 AM | christinastory
It’s been a hellish week; I feel I’m on an emotional rollercoaster. After my husband and I conferred with my daughter’s doctor, I wasn’t sure whether I could write about it. My therapist reminded me that I write for a living, at which point I screamed that this was not what I usually write about. I can’t believe I screamed at him. I’ve never screamed at anyone before in my life. I just lost it. But how could he equate assignments for magazines to dealing with my agonizing fears for my daughter? Well, after a couple of days of crying myself out, I crawled back to the computer.
It’s difficult to talk about this, but Michael and I went to speak with our daughter’s oncologist, now that Christy has undergone six months of chemo for her leukemia. I have to say one thing about Dr. Schumann; she was kind but blunt: Christina has not shown the progress hoped for. No remission.
She told us Christina was already on the National Registry list for a transplant donor. Michael and I had been tested and found unsuitable to be donors. Our parents had been excluded because of age and a few other medical considerations and since Christy has no siblings our circle of familial donors is rather limited. Michael is an only child and both my brother and sister have the wrong blood type. It wasn’t heartening to hear that 70 percent of kids found no compatible match in their families. I just sat there, mute. My usually quiet husband peppered her with questions.
Michael kept asking Dr. Schumann something, but I felt I was a room away, drifting away somewhere in my mind. He appeared to be demanding to know why we couldn’t do our own donor search, but I couldn’t connect the words. I couldn’t handle anything at that moment. I was lost. All I could think of was Dr. Schumann’s pronouncement on Christy’s lack of progress.
Our daughter was waiting for us in the doctor’s waiting room, a kid-friendly place where she had as usual found another young child to play with. An unspoken bond formed in a pediatric oncologist’s office. She was beginning to flag, and when Michael pulled up the car, I got into the backseat with her so she could put her head on my lap while she slept. Our drive back to New Jersey was without any serious conversation. I didn’t want to take the chance Christy would wake up and hear us. I am not one of those mothers who tries to keep secrets from children, but she is too young for this particular discussion. She should know what’s going on but only in a way she can absorb without terror. The problem is that I am the one filled with terror whenever I contemplate her mortality in fighting this disease.
To tell the truth, I have busied myself with her home schooling. Being out of school has been hard on her, yet chronic exhaustion permits few days in school. When she can make the effort, we go. I’m thrilled every time Christy sees her friends because she gets this great big grin plastered on her face. It’s about the happiest of moments lately.
I don’t want her totally isolated from her classmates, and I find it exasperating that some parents will no longer bring their kids over for play dates. It seems a snitch in the system has allowed the word cancer to be disseminated among the parents. You would think that educated people would know better. After all, it is not an infectious disease.
But the kids, bless them, always whoop it up when they see her; they love her and are always happy to be with her. I am grateful that I made that birthday party for her in school. It’s a good memory for her. She’d been worried about her bald head, but it seemed that some of the kids even called it “cool.” Amazing children.
Meanwhile Michael worries me, I am not exactly sure why. Okay. I do know why. I’m concerned he’s seriously looking into finding a donor on his own. I don’t know whether that is good or not, but I must find a way to reach him. We must talk about it—preferably with the doctor. I know it’s my fault as well that we haven’t talked enough lately.
At the moment it’s hard to believe how many things we used to do together as a family. Of course we’re constrained because of Christy’s need to conserve her strength. But I’d like us to at least once more go out for lunch or an ice cream once in a while. A kid movie? Maybe I should arrange a family get-together, prepare a picnic-style lunch to eat in the family room while we watch a rented video some Saturday or Sunday. Yes, I must do it!
Christina is so incredible; I have much to learn from my eight-year-old as I watch her take joy wherever she can find it. I’m praying her resiliency will serve her well in beating this cancer. This amazing child holds so much promise, I can’t bear the thought of her not fulfilling it. I’ve always known her as loving, but now I see she is also strong and brave. She will need all of it in the days ahead.
At this point Michael and I need to find the courage to face our own parents and talk with them about what we’ve learned from Dr. Schumann. I could honestly use the support of my own parents right now. What a relief to have a few more shoulders.
Sunday, October 11, 2009, 12:42:14 PM | christinastory
As I sit here at my computer, from my bedroom window I see the morning sun coming up over the roof of my neighbor’s home. The room, already vacated by my early rising husband, will soon be bathed in sunshine. I turn my face to the light hopeful for some lucky omen.
My name is Julia and today is my daughter Christina’s eighth birthday. About six months ago, my daughter caught the flu; or at least we thought it was flu. When she didn’t improve, she was admitted to the hospital for testing. The diagnosis was leukemia. I couldn’t believe my little girl had cancer. Often, I still can’t.
She’s missed a lot of school since then, mostly because of chemotherapy, sometimes because she doesn’t feel well. I am grateful she’s well enough today to celebrate her birthday with her classmates. She’s nervous and excited; she’s hardly been to school at all this month.
Christy is wonderfully unself-conscious most of the time, although her classmates’ opinions are important to her just like all other kids. They all know she’s been ill, but they haven’t heard the word cancer. It’s a scary word and she’s worried about their hearing it even though she herself doesn’t really understand exactly what it means.
But she knows about her disease. For example, she knows that she’s tired most of the time and feels achy, and has to go through uncomfortable treatment at the hospital. She also confided to me that she’s afraid the kids won’t like her anymore without hair. We’ve assured her it will grow back. I picked out a sweet baseball cap for her to cover her little bald head, but I told her she didn’t have to wear it if she didn’t want to.
Life is so unpredictable. When I married Michael, I was 30 and had no idea I would have difficulty conceiving. We both wanted a family and after a year or so of trying on our own, we began the rounds of fertility specialists, extensive testing and expensive procedures for years. It took more than four years, of injections, and doctors, and more doctors. Depression, arguing, pointing fingers. Our marriage was on the brink, all because we wanted a family. We almost gave up on having our own child when I suddenly and inexplicably became pregnant.
Our miracle baby was born on September 29, 2001—almost three weeks after 9/11. Isn’t it uncanny how our happy event was so closely preceded by catastrophe? I don’t want to make anything of that. At the time, our bliss was muted, overlaid with the grief around us. My husband’s firm had dealt closely with a company in the Towers. We were dazed to realize we knew some of the victims. I felt guilty about my secret joy over the imminent birth of our child after eight childless years of marriage.
In the midst of a nation distracted by grief and anger, Christina was the most precious gift we could receive. And I didn’t want to miss anything: her first laugh, her first words, her first steps.
Only now—eight years later—our world has crashed, and we still don’t know how to absorb the shock.
When Christina was first diagnosed with leukemia, I wondered whether this was a judgment on me. I still can’t get it out of my head that I was somehow to blame for her illness. Maybe all those fertility treatments. Or perhaps I failed to do the right thing along the way.
The shock and devastation of her diagnosis were such that it felt as if a bomb had exploded right in the middle of my lovely New Jersey living room. Despite my husband’s silence on the subject, I can see the pain in his eyes. Michael loves Christina dearly, but he has difficulty dealing with anything he can’t control. This is overwhelming him, so he won’t discuss it. With anyone.
Well, how can I complain when I am also unable to say certain things out loud, even to my therapist, much less my husband who drives across the bridge every morning down to Wall Street. Some mornings the three of us wordlessly travel together and Michael drops us off at the hospital where he will later pick us up. It is much easier to handle the everyday details of my life rather than deal with that jagged rock of fear inside me.
One day the therapist suggested I start a journal, and I latched onto the idea with a vengeance and decided to send my thoughts into Cyberspace. I resolved not to use our real names in what is called the spirit of anonymity—and to keep my husband from going berserk if he discovers me at my laptop in the middle of the night, dumping private family matters onto the screen in front of me. And yet the truth is I need him to acknowledge my elemental need to rage at the injustice of our child’s illness. This may be the only place where I can safely do so.
Right now, I dread the meeting scheduled in just a few days with our daughter’s oncologist to discuss the progress of her treatment. I pray for my daughter every day. I recognize it is because she is my child, yet I think Christina is very special. She lights up a room with her sunny personality and those sparkling blue eyes the color of a summer sky while her dark blonde curls used to spring out all over the place. At least until she lost her hair with the chemo. She has always been one of those kids who has a smile for everyone. The most amazing thing about Christy is that she still smiles at everyone!
Sunday, October 11, 2009, 12:34:17 PM | christinastory