We were awakened this am early by our night nurse informing us that Melissa's heart rate had not gone down, as we had hoped it would. Instead, it was up. She was tachycardic again. So, back to the hospital. We don't suspect it's anything major, or that she will be there any longer than to get some fluids via iv. But it gives me the chance to put together an update -- since I'm up and I might as well stay up. Actually, I just went into work early.
Melissa has has a tough couple weeks, actually. She had a stomach virus that produced some vomiting, but that more importantly has kept her from being very responsive. She has gotten over that, but bouncing back has been slow, and she is only now getting back to being more responsive. Unfortunately, however, she has also been having entire body length spasms, mostly on her left side, for about a week now. This has meant that we have been treating her with a pain killer that knocks her out. We just found out that the reason for this was that her sodium level was low -- we all cramp when our sodium level gets low -- so we adjusted her medication that helps her regulate her urine output. The problem? It causes her to void so much that her liquids get low, and she gets tachycardic. This all pints to the difficulty of managing her complicated medical situation. Two steps forward, one step back....
We also visited the radiation oncologist -- something like the 8th or 9th of Melissa's doctors. What we found out was sobering. Though there is no evidence of the benign tumor's resurgence, there is about an 80% chance that it will. There is also a 20% chance that it won't. Percentages. That's the world we live in. All in all, the news was about the best we could have gotten, especially given that a year on, the latest MRI shows no return. That's good.
Yesterday was a big day for Melissa. Her mother is relentless. First, she loaded her in Gigi's van -- not a wheelchair van -- and took her to her eye doctor so her new glasses could be fitted for her. Interestingly, and inexplicably, her vision improved as a result of all this, going from about 20/400 to 20/250 in each eye. Her difficulty is seeing things close. Anyway, Lawanna got her there, got the glasses fitted, and then took her for a hair cut, to Supercuts. Her new "do" looks so cute. Very short, very easy to deal with. It brings out her face. But doing all that -- two things -- is so taxing. It took about 5 hours, two in-and-outs from the van, and Spenser and Jaimie, one of our care-givers, helping out, all while Spenser followed the van with the wheelchair. I say all of that just so those of you who don't have experience with this kind of thing can get an idea for the logistics of this kind of thing. So, after a day like that, when we were awakened this am early, Lawanna was very, very tired.
West has also been sick this week with some kind of intestinal bug. Poor kid. He has not vomited, but the other end has been very active, and his poor bum is so sore. We have had to hold him a lot, which is, of course, a two-edged sword. We love that he is so affectionate, but it's hard to get anything done too. But he's at Gigi's, so he is very happy, being spoiled by great grandma.
A friend brought him a wagon. It's really cool, not like the Red Flyers we all grew up with. It's plastic, with two seats, and even a door. I took him for a spin the other day and he loved it, sitting upright, able to look all around. He's changing so fast. He has started screeching, actually. It drives me crazy. He sounds like a raptor or something. And it's so penetrating. It's almost worse than his crying. And he now points at stuff that he wants, and then screeches. But he's also starting to say "ma" for more. He says it, then he points, then, if you're not fast enough, he screeches. It's both hilarious and way too much. And he's given up on crawling on his knees. Now he just scurries on his hands and feet. I'm now calling him Mogli. He's so fast. And because our first floor is all tile, you can hear, slap, slap, slap, slap, as he races from one spot to another. Then he stops, sits, looks back, smiles, and then heads off. And when he is upstairs, and you are downstairs, he sounds like a herd of large animals. Hilarious, and so cute. (Grand)parenting -- priceless.
So, we continue to be blessed with the two joys of our lives -- Melissa and West, both the absolute joy of our lives. Melissa is so beautiful, and caring for her daily has brought out such a bond of affection. If love is doing for others -- and it most certainly is --
we get to love her so much. Mostly passive, she has to receive it, and we are so thankful that she knows us, and that it is us caring for her. This morning just before she headed off to the hospital, I was able to explain to her what was happening, and with that new haircut, and those penetrating hazel eyes looking intently back at me as I spoke with her, I was struck by how beautiful she is and how much I love her. And yet, it is so sad.... And West is just the opposite: so active, so engaging, and yet just as beautiful. And yet it is so sad: Brian works away five days a week, so he misses his wife and son; Melissa can't really participate in every and each milestone West meets; and West has neither his daddy or his mommy the way he would otherwise. It's just all so sad -- and beautiful.
Team Melissa Update
All the one-year anniversaries of the trauma are past.... All the talk I have engaged in since last March about "the long haul" of this kind of thing seem defined by a haul much less long than the one we're in. Behind it all was a faint hope that really months, not years, would bring more discernible improvement than we have been able to enjoy. The haul seems like it will be longer than I thought in those early months. But everyday things happen, important things. But just as we all have had the experience of taking fewer pictures of our children as they get older, so it feels to me like I have less and less to say, or less and less motivation to keep talking about what seems to be a rather perverse kind of "Groundhog Day." I think that's how it's supposed to be, or, that's how it works, but I've never been through this. Each new day is really a new day, filled with experiences we have not yet had, if that makes sense.
Several people have sent us meals via takethemameal (see the "about" section here on FB if you are interested). It's been really nice. Thank you to all. Today, I talked to one woman who turns out to be the therapist who "took" most of Melissa's clients/patients when she became ill. It was very moving to speak with her, for the first time, after a whole year. Melissa recently indicated to us that she wanted her phone, apparently so she could check on her clients, so she had been thinking about others in all this, and then I get a call (and a meal) from the person who helped so many of them. We don't often think about those people, but they were traumatized too. Only those people -- like me -- who have depended on a therapist can fully know the fear of "losing" a therapist, but they were victims too. I'm just glad that Melissa's friends and colleagues so effectively took care of them. Obviously, Melissa wanted that.
Well, things are good.... We had a bit of a scare on Tuesday evening, as Melissa's heart rate worked its way into the 130s. She took an ambulance ride to the hospital, and after 6 hours, and by 3am, they determined that the chest clod that's been going around (our house too) probably had gotten her. An antibiotic treatment and some tests were administered, and we had her back in her own bed, at home.
As has been clear on SMC on FB, she is progressing, even if there are a few steps back once in a while. We are still figuring a lot of things out, really. There is just so much to stay on top of. West adds to the "adventure" of all of it, as he is now crawling very fast and, therefore, making his presence known even more than we are used to. The "speed" of things is seeming to increase, even if our routine is now better known. He too has the chest cold. And his first to upper front teeth are finally through. Every day it's something new with him.
Meilssa is "working" a lot. Everyday she is out of bed two or three times, and now for several hours. She is being stretched and made to move "on the mat," rediscovering very basic but important things about movement. We are careful, however, to also have her rest enough so that when she does work, it's enough to challenge her, but not so much as to "knock her out." In the last week, I may have noticed her being awake less, so we want to make sure that is not because we are pushing her too hard.
Even with all the help we have accrued, we are still always exhausted around here. It would be one thing to have just Melissa. That would be exhausting. But to have West also adds to the challenge. The physical part of it is plenty, but the need to stay vigilant presses in a different way. We "go" literally from the moment we awake until the moment we go to bed. It sometimes feels like too much -- though it's not. But it sure is tough. Even today, as Brian got a three-day weekend and therefore has been able to spell me, I'll be "away" for several hours but am tired even as I sit in my office trying to catch up on things I have not been able to get to. I'm sure it will feel at the end of the day that I have just caught up. Thankfully, I have been able to get back into the practice of playing tennis two or three times a week, and to be around my great friends who also play. But there is no getting ahead -- she is always there, needing a vigilant and caring eye.
So, that's how things are, in a brief nutshell. Nothing much new.
Grace, Peace, and Love
Papochka (Melissa's dad)
A note on the pic: Mel and her super-dear friend Abby, in better times. That energy and beauty and life are just parts of what we so miss and the reason why we keep pushing her and ourselves -- to get it back.
Yesterday (Friday Feb 13th) started at 5 am when the ambulance company showed up to take Melissa to SF to see her neurosurgeon, Dr. Theo(dosopoulos). Arrived and were in the office by 10, out by 12, and back in bed by 430. She travels well.
Seriously, in layman's terms, Dr. Theo was exceedingly impressed with Melissa's progress. We showed him a video of her talking back in December, and told him of her recent improvements. Basically, he said she could continue to improve, or stop at any time. But he also made it clear that what she is doing is clearly cognitive in nature, and it's her brain that's healing, and it's her neuropathways that are firing -- not the drugs she is on. They provide other benefits, but none of them enhance or decrease her cognitive abilities. Even if they sedate her, that's different. The upshot is that we have been right about her -- she has not only been "in there," but she is presently "in there." He also said that there is no data on which to base any prognosis, as we have known.
I'm not quite sure how to say just how much we love Dr. Theo. We cry every time we see him -- and he does too. It's the Greek in him. And my goodness, he is so smart. More importantly, he loves Melissa, even though he has only ever had one conversation with her. And his PA too, Tracy, is just the bomb. I did not anticipate how emotional the trip would be. It seemed like something to endure (and the nine hours in the car was, indeed). But when I walked in the office, it hit me -- these are the people who saved Melissa's life, and who have been with us every step of the way.
As always, there are just no guarantees. But he made it clear that the brain "shuts down" to save itself -- hence, a coma. And in the same way, it "shuts down" everyday, sometimes several times a day, when it can't do anymore. It's like studying "too much" -- the brain says "enough." Well, that's what hers did 11 months ago, to save itself, to preserve its life, as it were. And he also said it will take likely years for it to heal however completely it will heal. It all was both hopeful and sobering at the same time.
Here is a recent post from our Support Melissa Carleton Facebook Page, but without all the pictures. She's doing really well. :)
What did Melissa do today???
PT from 9-10: she contracted her right inner thigh muscle when asked to pull her knee inward; she kicked her right foot in sitting position; she held her trunk more stably; she was sitting up (assisted) for 30 minutes.
From PT into her wheelchair for another walk, this time around two blocks and across the big street (Palm Ave). Today was a beautiful winter day in Fresno -- 73 degrees. This morning was absolutely gorgeous. Sun shining, little warm breeze. West and Norma went with us. All total, she was in her chair on that stretch for 1.5 hours.
We returned her to her bed and laid her on her right side, as you see in the picture. We're rolling her on her side not only because for so long she could not be on her side like that because of the hydrocephalus and her lack of a bone flap, but also because her lungs need it. More and more, her lungs are regaining strength and capacity. Note she is also capped while resting -- the trach is capped and she is breathing just through her nose and mouth. Note her oxygen saturation level is 97% and her heart rate 82. For her that is some of the most relaxed resting she has done in a very long time. And she looks so beautiful, having earned her nice little afternoon nap.
She had a nice bath this evening, including a scalp massaging, head scratching shampoo -- ahhhhhh. Then it was time for more work. After range of motion with her legs, feet, hips, midsection, arms, chest, and neck, she was back on the bedside. And this is where we got the best gift of the day.
First, after getting her to relax her right hand enough to take the hair brush in her hand, I asked her repeatedly to raise the brush to brush her hair. We waited, then repeated, several times. Then, slowly, she raised the brush up to where you see it and held it there. Her right shoulder was very tight -- we could not get it loosened up well -- so that is as high as she could get it. But she followed the command, and she tried to use the brush! Then, after we composed ourselves, I asked her -- again, several times -- to give me the brush and, as you see, she did! BIG. Little, but BIG.
Then we put her in her wheelchair again and she and Amanda, a Fresno State nursing student who is doing a great job with her in the evenings (so we can get to bed at a decent hour), watched some TV together. Then, back in bed after another hour and 15 minutes in the chair.
All totaled: Up at the bedside for PT for an hour and 45 minutes, almost 3 hours in the chair, and a walk to boot. Oh, and she "brushed" her hair and gave me the brush when she was done. (And, yes, I cried -- and so did Amanda).
Things are going well these days -- except that Brian has had to go back to work. Work is not a bad thing, of course, but Brian has been fortunate, as has Melissa and West, that he has not had to work at his job since the trauma. He is finally healed form his injury sustained in the course of his duties as a sheriff's deputy, and he will be working int he courts in Santa Cruz County for the next 8 months. He will be home on the weekends, and we will all miss him. Just as importantly, he will miss us.
Two of the things we've been excited about Melissa's move home is the time she can have with West and the family, and us being able to take her on walks around the neighborhood. Today, as you can see, we combined both -- West and Melissa on a walk together. Melissa's sister, Sarah, is out from Missouri for five days. We have enjoyed her so much. And sometimes West gets to happily hang out on momma, and with Gramma, as you can see in the picture.
The other thing we are excited about is being able to nurse her to as much wholeness as we can, and as she can accomplish. The third picture is of Melissa clasping her own hands. It might not seem like much, but it's the first time she's done this in months. It's therapeutic terms, she is kind of helping herself here. We had to arrange this for her, as her fingers on her right hand are still toned. Another good thing that's happened is that the size of her trach has been reduced from an "8" to a "6." This week we might change that out to a "4," all part of the process of weaning her.
So, a lot of good has been happening since she returned home last Friday. Note that we are not able to post as much as we have in the past, basically because we are providing so much of her care, and West's too. It's really exhausting, even with the nursing help, and all the meals our friends have provided.
As many of you know, three days after Melissa's arrival home we had to take her to the ER via ambulance due to a high and unexplained heart rate, intense pain (which she expresses as facial expressions and agitated movement), and occasionally, too low blood pressure.
It looks like we finally have an explanastion of why Melissa’s heart rate has been so high the past week. She does not have any infection. Melissa has a cardiac disease called Takatsubo cardiomyopathy. This is a stress induced disorder of the heart where part of the heart's muscle becomes suddenly weak and is pumping less blood volume than it should. This causes the heart rate to rise. The disorder is also known as "broken-heart syndrom" because it is a kind of acute cardiac failure found in women who have lost their spouse (originally this was recognized by doctors in Japan). The condition is painful, as it is a kind of "heart attack," although when treated, not deadly. Melissa has likely been experiencing a great deal of chest pain over the past few week or so, even prior to her discharge from Kentfield.
In my opinion, "broken heart syndrome" is about the only disease that makes sense for Melissa. My sleepy wife has had to endure so much this year and has had to miss out on her new family in ways would break her heart. I wish she had an injury that could be repaired by a transplant. I would gladly give her my liver, lungs, heart, or brain to give her a fair chance and being with her family.
While Melissa is at CRMC we are ensuring that Melissa’s given constant pain management while the doctors try to slow her heartbeat and give her heart some time to rest and recover to normal functioning. Melissa is also being given beta blockers and they may consider additional measures if her her cardiomyopathy does not improve over the next week. The condition, although appearing grave is very survivable and Melissa should be fine in a few weeks.
Fortunately, Melissa's mother works as an NP at CRMC and is able to check in on her from time to time throughout the day, so there is not the same sense of having the family pulled apart.
It may be that the stressor that caused this condition was an infection that she had, but it also could be the stress of leaving Kentfield, the stress of the chaotic discharge, or even missing the holidays which, for Melissa, would have been a profoundly painful experience even when healthy. If anything, it suggests that Melissa may be more aware of what has been happening than we give her credit for and it is a good reminder for all of us to maintain a supportive and as stress free an environment for her as possible.
Fresno's Community Regional Medical Center is giving Melissa very thorough and comprehensive medical care. It is a teaching hospital that is part of UCSF and is excellent. Melissa is in the Neuroscience unit and being seen by internal medicine, neurology, and cardiology. I believe that she is in very capable hands and we look forward to her coming home to us, again.
Thank you to all that have helped us with bringing Melissa back home, and who are now, again helping us while we try to get her back home once more.
Brian Lande (Melissa's Husband and West's Dad
As of this writing, 1,611 people in 9 ½ months have contributed $123, 291 to Melissa’s gofundme page. Hundreds of others have contributed to two fundraisers, one put on by hundreds of Melissa’s Soup Community friends, and one put on by our dear tennis playing friends, the Melissa Carleton Doubles Challenge. Hundreds of people have purchased on a registry virtually everything we have ever needed for West – food, diapers, clothes, strollers, and more. Long-time friends and perfect strangers, co-workers, acquaintances, foreigners, friends of friends, patients and clients, police personnel, you name ‘em, have given what has added up to so very much. Housing has been donated that would have cost several thousand dollars per month. All this for Melissa, for West, for Brian – for us all. Why we have been the recipients of such largesse when others, thousands of others – some of you – have not, is beyond us. We wish everyone in similar circumstances could benefit from the love and graciousness of thousands the way we have. If we never received another contribution of any kind, we can honestly say we have received over and above anything we ever have felt like we deserved. As I have said before, and will say again, “thank you” is just not enough, or it does not feel like enough, but it’s all we can say.
Along the way we have done our best to be graceful and grateful, and to express it, regularly. We personally have thanked every single contributor on gofundme. We have tried to respond to every person who has given in any way, though I’m sure we have missed some. We have acknowledged the now thousands who have commented on our posts. And every single item that came to us, such as clothes, will be given away when we can’t use them. We now have four boxes of clothes for the local women’s shelter, and numerous toys that West has already outgrown. We just gave three cases of unused newborn diapers to a friend whose grandson is in need of a kidney transplant and in the meantime uses three diapers for each diaper change because of shunts that must be covered. It’s only right that we do that. My son recently said to me regarding thanking people, “Dad, these people probably never expected to hear anything from us. They just gave from the goodness of their hearts.” He is right, I’m sure, yet I answered, “But it’s the right thing to do. Saying ‘thank you’ and expressing gratitude is always the right thing to do.” “And besides,” I added, “Your sister would be horrified if we did not.” She will be proud of us for having done so, and for giving back as much as we could. Every interview I have done on camera after the baby was born, I have mentioned this – the need to express gratitude – even if the TV stations have not generally included it. We want everyone to know how thankful we are, and that we know there are so many others struggling as well. One disturbing pattern I have noticed in all of the media pieces is that they always mention the amount we have received, sometimes in a way that sounds to me like it’s some kind of competition that we’re winning – not a necessity. As I told Katie Utehs of KTVU, I’m embarrassed that in spite of our good jobs and good insurance benefits, we still can’t pay for Melissa’s care long-term. This is a national problem. There are 325,000 traumatic brain injuries in this country every year. That means that there are thousands of other families who find themselves in similar circumstances, and that’s just considering brain injuries. Unfortunately, to say the least, we have become just one of thousands of families in similar situations, which makes us unexceptional – except that we have been treated exceptionally well by thousands, perhaps tens of thousands, or even hundreds of thousands, due to social media.
So, now that Melissa has come home, it is time to answer the question, what can people do to help. First, let me say that if you think enough has been done for us, please give to someone else. That’s what we would want. That’s what Melissa would want. Find someone else who needs, and give to them. Or, wait until enough time has passed that you think another contribution would be justified. But if you want to help, at the risk of sounding crass, the thing we need the most is money. It will take Melissa years to recover, and the cost of that care will be very high. We can’t right now say how much we will need for the first year, or the second or third, but we know that what we have will not be enough. We figure we have enough for the first year, and perhaps a bit longer, but past that we can’t presently cover. Costs are high – just one 12-hour shift of nursing help runs about $240. We need that every day. Just covering nursing for a week would be $1700. Just to get enough sleep, we will need at least 8 hours of nursing a day. Some of that will eventually be defrayed with IHSS and IHO (county and state assistance programs), but what we have now will not last us long. We have years to pay for.
If all you can do is pray, pray. If all you can do is “share” our page, share it. But if you can do more than that, we hope we are “worthy” of your doing so. Personally, I’m not sure what “worthy” means here, and I’m not sure we are worthy, and I’m certain others are more worthy. But one thing we have learned is that the world is filled with good people, and if they want to express that goodness by helping us, and if it is more blessed to give than to receive, as we believe it is, then we will receive with thankfulness for the blessing of others being willing to give. It’s good for us, to be sure, and it’s good for you. We will continue to do our best to use it to heal Melissa and raise West, but also to share our own goodness in whatever way we can, though that is limited right now by our circumstances – our focus on West and Melissa.
In the last 9 ½ months we have also received so much good advice from so many. We try to read every comment to every post and note suggestions. We are compiling a file of all offers and volunteers and advice. Now that we are home, and Lawanna is able to tap into her considerable list of co-workers and doctors at CRMC, we have assembled a very qualified team of case managers that know the local medical care landscape very well. That is so helpful. It also reminds us of how fortunate we are, and how unfortunate it is that so many in our circumstances don’t have that kind of expertise and good will to draw on. Even so, we appreciate all the advice and creative ways of providing for Melissa many of you have offered. We will continue to take them seriously.
So, if you are moved to give to us, please do so. If you are moved to contribute to someone else, please do that. And if you can’t give, we understand completely. Please “pray” for us, whatever form that takes for you. We so appreciate even your consideration and are moved to tears frequently by your largesse toward us.
Another milestone has been reached -- our beloved Melissa is finally home. What a Merry Christmas this has turned out to be. We are elated… ecstatic… that after nine and a half months of agonizing waiting and immense amounts of patience, of real suffering and great joy, Melissa, Brian, and West will all be under the same roof, and we, her family, will be able also to see her and be with her everyday. Our family will be made whole, even if the reality is different than for what we have intensely hoped.
Melissa has worked so hard for this. When called upon to give every ounce of effort she can muster, she has done so. When required to be patient -- with caregivers, family, sickness -- she has done so. Day after day, she has lain in her bed, looking at the same walls, hearing the same sounds, enduring the same rhythms. It has been "work" -- a train load. She is the true hero in all of this. Her goodness and our knowledge that she would do nothing less for us has spurred us to be absolutely devoted to her. Whatever we have done pales in comparison to her devotion to life, and to love, and to her family, especially Brian and West, and to herself. And now, every day, every morning, she will awake to the sounds of home, of family life, of love. We can't wait to see her and West get to know each other again, to teach West how to be gentle with his mommy, and yet to crawl all over her too, whether in the bed, or on the mat, or on her lap, as we take her for a walk in the neighborhood. What a blessing this is, to have her home. For each and every one of you who helped make this possible, from the absolute depths of our hearts -- thank you, and thank you again.
And Melissa is not the only one who has worked tirelessly. Her husband, Brian, has committed himself to her in ways almost unimaginable. I can't say enough about what we've learned from him about devotion, and the meaning of "for better or worse." He is just the best. Family has contributed in also almost unimaginable ways. Lawanna has worked so hard, unable to take a leave from work, all the while "showing up" for her patients and coworkers when she could hardly lift herself out of bed for grief. She has taken care of our boys, and the home, while I have been away. She has made the trip to San Franicisco also, so many times. Just as important, she has counseled Brian about Melissa's care. And she has loved her beautiful daughter in immeasurable ways, to say nothing of her devotion to West as a loving and caring grandmother. Gigi (Lawanna's mom, Melba) has been there for Brian and West from the start, willing to uproot herself and move to San Francisco, even while her own family, and her beloved husband Jack, who passed away a few months ago, had to manage without her, as she provided a steady, and confident guiding hand as Brian adjusted to life as a father. Family (Melissa's brothers, Zach and Spenser; her sister, Sarah; her niece, Grace; Brian's brothers Kevin and Neil, and sister, Katie) have unremittingly responded whenever asked, in small ways and in big.
And friends, long-time friends of Brian's and Melissa's and ours, have spilled their hearts out in helping in whatever way they can. Friends and strangers alike have fed us, housed us, encouraged us, contributed to our cause in immeasurable ways. And two hospitals (UCSF and Kentfield), complete with their caring doctors, nurses, therapists, social workers, and various staff, saved and preserved Melissa's life, thereby allowing West to be born healthy, and assuring Melissa's optimal health and our blessing of being able to be with her every day since March 11. Names abound, and I would leave someone out for sure if I attempted to name all, but they all deserve our thanks. You don't spend over nine months at two hospitals and not develop a love for dozens, even hundreds, of people who care for your loved one. And it is love. Thank you to all at UCSF and Kentfield. Our hearts are full of appreciation for you.
We are the most fortunate of families. We continue to ask you all to pray for us, and to do whatever your heart leads you to do for us. The kind of care Melissa will need for a very long time is intense and expensive. Even good insurance like ours does not cover everything -- unfortunately, not even close. As thankful as we are for the considerable amount of money raised so far, we are conscious that more is needed. If you are inclined to contribute, please do so at our gofundme site (in the "About" section on Support Melissa Carleton FB page). If you wish to contribute in other ways, please let us know. We will post very soon a more specific list of needs we have, should any of you wish to assist us with various provisions. And from time to time, we will do that also.
As for Melissa's condition, she is presently still in what's referred to as a "minimally conscious state," technically a coma, but on the wakeful and positive end of the coma spectrum. Some of her recent scores on assessments tests of her condition have been among the highest she has ever had. She hears us, tracks us with her eyes, moves all of her limbs, turns her head, has started mouthing words, and is improving slowly, but still can't help herself in any meaningful way. In a way, she is like a quadriplegic, but with the very real hope that she will grow her way out of it, or, rather, into helping herself more and more. She is able on occasion to signal a yes or no. She still has a trach and a feeding tube. In early November, she had a shunt installed in her brain to help diminish the effects of the hydrocephalus she had contracted, and we are presently in a state of waiting, and a place where she must come home because she is not ready for acute rehab. Her insurance has been very good to us, but they can't pay for hospitalization forever in a case like Melissa's. We have brought all the equipment she will need into our home. We will do our best to turn our place into a personal rehab center. We will have as much nursing as we can afford, and we will be happy to give her much care too. We still have West to care for, and Brian will return to work in January, and Lawanna will keep working. Fortunately, I have 14 years of sick time to use in family medical leave and will be "off" until August. The boys will kick in, and many of our friends and family will help. Without overstatement, it will take a village, as we have been saying, and we are happy about that.
So, a new chapter begins, and we could not be happier. Melissichka is finally home, where she now belongs, enjoying the light and warmth of our sun room in ways it has never nurtured anyone, and we get to lovingly nurse her back to health. Cherish your children, all, and love your family. Merry Christmas and Happy Holidays to all of you.
Today is my Birthday. So many people have been wishing me a happy 33rd. I wish it could be happy. It isn't unhappy. But this birthday just can't be satisfying without sharing it with Melissa. But, I am with Melissa and that matters to me more than anything. Now that Melissa's skull is intact, I got to hold her, in her bed, and rub her toned arm. Just being able to hold her again and to not worry about whether or not it is safe is so significant for me and I hope for her. I think she relaxes when I hold her, her tone becomes more relaxed, her heart rate goes down a bit.
I have not posted much about Melissa's condition for the past month or so. Melissa has had so much happen in the past 4-6 weeks that it is difficult to say what her condition is. Melissa has made some gains since she had her shunt put it and had her shunt adjusted. Melissa has regained some range in her toned right side meaning that she can now fully extend her arm at the elbow, she can have her arms raised to 90 degrees at her shoulder, and her fingers are easier to extend. Melissa still experiences pain when her right arm and hand is ranged, but it seems much less intense than in the past.
Melissa is also wakeful much more often and sometimes for 8-10 hours. Melissa still cannot communicate effectively but her vision is becoming quite good. Melissa also cannot produce behavioral responses when asked. That said, Melissa has become increasingly able to spontaneously organize complex motor movements. Melissa can intercept the hand of a nurse or therapist and push it away. Melissa can also touch her face and wipe her mouth with both hands. She doesn't always do this, but she does now do this several times a day. Yesterday, for the first time in nearly 6 months, Melissa placed my hand on her cheek.
I hesitate to mention her next improvement because I don't want people to overreact and read to much into it. But Melissa has begun trying to speak. Over the past month Melissa has begun producing not only lip movements but full lip and tongue articulations. Sometimes those movements produce clearly articulable words. Sometimes Melissa strings three to five of these into full sentences. Sometimes, when Melissa has her speaking valve on we can understand what she is saying because we can hear it. But, Melissa can't produce these mouth articulations or verbalizations on command. Yet, sometimes, when I ask Melissa to repeat what she has said, she is able to do so. It is very hard to make sense of what Melissa is saying. Sometimes she may be producing "word salad." Sometimes, like today, she seems to be saying, "Hello, how are you?" to her therapists.
These are all positive developments but they have developed slowly, they frequently disappear for days at a time, and it is hard for me to know if she will continue to improve.
Melissa and I watch videos of West on Facebook. Melissa frequently smiles during the videos and is certainly paying intense visual attention to the videos. I am sure that she knows that what she sees is West and that West is her son.
Next month, I will be returning to work, probably around the time shift change at the Sheriff's Office. Many people have been asking me if I am ready to go back to work. The reality is that I have been ready to go back to work for months and would have if I had been able to. My hand is finally regaining strength, the pain from my injury is largely gone, but I am still working on range of motion and flexibility. I don't worry about doing the job. I love police work and I love working with and helping people. I want to go to work and I need to go to work to support Melissa and West. There is nothing more important to me than being able to ensure that both Melissa and West get their basic needs met.
That said, what is hardest about going back to work is that I won't get to see Melissa or West. It has already been a great sacrifice to have West move to Fresno to be raised by his grandparents, his uncles, great aunts, and his Gigi (Melba, his great grandmother). West is loved and well taken care of and so I bear his absence because it is what is best for West. But the greatest weight, for me, is knowing that I soon won't be able to be with my wife and knowing that she will be alone in the hospital. I also know that Melissa needs me to work, keep our benefits, and keep our future bright and alive. The Sheriff's Office, unsurprisingly, has been a constant source of support and they are doing whatever they can to make the transition back to work as smooth as possible.
Over the next month I will be trying to sort out housing in Santa Cruz, work schedules, and how to spread my time between Melissa (Kentfield, CA), work (Santa Cruz, CA), and West (Fresno, CA). The coming months will be some of the most challenging. But John, Lawanna, and I will, as always, drive on, adapt, and improvise to make sure that the people we love are cared for.
Thank you all for your continued support.
With much gratitude,
Brian Lande (Melissa's husband, and West's dad)
This is a recent FB post from Brian:
Happy Thanksgiving from Melissa Carleton and Brian Lande
John, Melissa's father, has already done a wonderful job of thanking everyone for their contributions to our lives. So I want to just share with everyone how Melissa's is doing during her first Thanksgiving in a coma.
Melissa, unfortunately, is having a rough day. She appears to be having some seizures that have just been treated. She is now resting, much more comfortably, and we are sitting together, holding hands, and listening to quite music.
Later, today, I will go to Thanksgiving dinner at Susan Filloy's home. Susan has been kind enough to take me into her home so I can be near Melissa. I know Susan because her son Nick Filloy, is one of my best friends, going on 12 years now. Throughout my twenties, when I was not able to go home to Montana for Thanksgiving with my own family, Nick and Susan used to invite me to their Thanksgiving. It was always fun and I have always felt very comfortable with the Filloy's and their clan.
Beginning in 2011, Melissa and I shared a small Thanksgiving at our house in Fresno, usually with my brother Kevin Lande, who lives in LA. Like our life and home together, these Thanksgivings were small and intimate, usually just three of us, cooking, and taking the dogs on a long walk to Woodward Park or to the Sierra foothills. We might also head over to Melissa's grandmother's house for a bit to spend some time with the extended family.
Melissa loved setting a beautiful table for the holidays and she had special place settings that she put out for our Thanksgivings. We also had a small fire pit in the backyard that Melissa loved using on Thanksgiving to make s'mores. My sleepy wife's other favorite activity was to break out the Christmas tree and to start decorating it with Kevin and I.
On this first Thanksgiving that we are having at the hospital I am once again, so sad, and also so thankful. I am thankful that my family has grown stronger since Melissa fell ill. I am thankful for the way that John and Lawanna love their daughter and their grandson. I am grateful that John and Lawanna have taken it upon themselves to help raise my son, in my absence. But above all, I am thankful for Melissa. How special it is to have met someone who is able to articulate and cultivate the best in me, my aspirations, my dreams, even in spite of my not being aware of what they might be. To be in a relationship with Melissa has been much more than two people living together. It has meant transcending what either of us could be on our own, being part of a relationship that is grander than either of us as individuals. It has been a lovely and amazing to be part of our marriage. I am so grateful for this amazing gift that Melissa has given me. I am so thankful that in Melissa's time of need that I was married to her and able to be with her. I couldn't do that if Melissa hadn't let me into her life. Finally, I am so grateful to Melissa for sharing with me the gift of our son West. I wish I could be with Melissa and West today. Better expressed, I wish Melissa could be with her son.
The photos, below, that I have posted, are from our first thanksgiving together in our home back in 2011. I wish we were there now, hiking with the dogs, Henry & Padget, and getting ready for our small Thanksgiving, surely a bit larger now that West would be joining us.
Just minutes ago Melissa went into the UCSF surgical room to have her skull bone re-implanted after eight months, and to have a shunt installed to relieve her brain of excess fluid from hydrocephalus from which she has been suffering for months. It feels to us like a new stage, though it is not, really. It’s just another step in a long process of hope and medical care that continues to take unpredictable turns and demand of us new adjustments. We expect her to return to Kentfield Rehab later in the week to continue her long and arduous rehab. Melissa continues to fight hard, in so far as we can see. We look forward to a day, perhaps soon, when she can begin to reliably communicate with us, whether in word or signals, so that we can know more about how she is doing. It’s been a very long eight months, and yet we have no illusions that those eight will be multiplied many times before we see the full fruition of her recovery.
In the meantime, we continue to travel back and forth between the San Francisco Bay Area, where she has been a medical resident for over eight months now, and our family home in Fresno, 180 miles away. At least one person is always with her, though this week there will be more. And at least one person always stays in Fresno to care for our Lil’ Peanut, West (pictured), who, in spite of all of the turmoil in his life (about which he knows nothing), continues to thrive. Last night for instance, just before his six-month birthday, he slept through the night in his own crib for the first time. He is meeting and sometimes exceeding all of his benchmarks.
At the least, we ask you to keep us in your thoughts and prayers. Please also follow us on Facebook, at Support Melissa Carleton, where we are trying to share as much as possible our story of love and hope and life. For those of you who have already contributed toward her long-term care, thank you so much. For those who will, thank you, too. Much good has come from this for us, strangely, and perhaps predictably, given the quality of our friends, and we hope much good will come for you too from our experience. We will continue to keep you posted.
Many of you have wanted to find out why Melissa's procedures were cancelled. To the best that I am able to ascertain Melissa's procedures were canceled because she had two minor infections. There was also some miscommunications between doctors that may have lead to this emerging as an issues at the last minute. Melissa has now been treated for these minor infections and we now await word from the infectious disease doctor as to whether or not Melissa is now cleared for her procedures.
Once Melissa is cleared we will have to begin the back and forth between Kentfield and UCSF to try and get an OR room booked and make sure that there is an ICU bed available for Melissa for after her procedures.
As many of you probably guessed from the tone of my post last week, I was very frustrated to not know what was going on. For Melissa, her family, and I, the shunt and bone flap procedures were well earned and much needed positives after a hard month. After selling our house, our belongings and having to move West three hours away from me, to Fresno, I was ready for a positive development. Having the procedures fall apart at the last minute, even if for good reason, was a slap in the face for me. But we press on. I hope to have Melissa's procedures rescheduled as soon as possible. But with holidays approaching, who knows what that will be.
In the meantime, I came down yesterday to Fresno to be with West. I have been missing him and since Melissa is stable I felt that I could take a break and go spend time actually fathering my son. John took my place in Melissa and he is getting some hard won time with his daughter.
Not only am I glad to see West, it is awesome for me to see how involved West's uncle, Spenser has become in West's life. Lawanna, as always, is taking amazing care of West. I miss the camaraderie and the pleasure of having everyone under one roof. It will be a while before we can have that again. Until then, West has a great home in Fresno.
I know that many of Melissa's followers have continued to ask how they can help support Melissa and West. We can still benefit greatly from gas cards for Chevron or Shell, especially now that we are doing much more commuting back and forth between Fresno and the Bay Area. We also continue to need assistance with bills. You can donate to Melissa's fund raising by visiting http://www.gofundme.com/team-melissa.
A house may not be a home, but a house holds a lot that makes a home – memories and emotions particularly. It looks like today is my last night in this SF apartment, which has in every way become a home for me, and for us, in the last seven months. Again, and again, thanks to Frank and Donna Falzon for donating it to us. The memories and emotions we have shared, and the relationships, new and old, we have forged here could not be configured in the same way without you and your generosity.
West is in Fresno, along with Gigi and Lawanna. Brian is in Orlando, Florida, at a police “trade show.” He’ll be back in a few days. Melissa, of course, is still in Kentfield, hopefully going to UCSF in a couple weeks for an important surgery. And here I sit, alone, in the place that has been home, waiting for the house cleaners, feeling nostalgic, empty, and emptied.
It was here where we forged a family with Brian, where we watched him suffer quietly, listened to his wit, became the aim of his sarcasm, and were amazed, and sometimes mystified, by his intelligence. This is where we observed him bear his soul to news people and cameras. And this is where we watched him, indeed, helped him, take his first baby steps as an eager father.
It was here West first experienced a home, where his presence filled this place up with love and adoration, to say nothing of hope for a new life that, like his mother’s, could be filled with difficulties and disappointments, but will certainly, and already has been filled with nurturing and care and devotion. This place houses all the moments when we wanted to do nothing but simply stare at him, and adore his beauty, and hold him. And boy did a lot of that happen. Here we watched him grow, as did you, testified to by all the videos we could not help ourselves from taking and putting on Support Melissa Carleton on Facebook.
It was here that I got to know Gigi again, and she got to know me again, and we both got to see how deep love can grow between a mother-in-law and a son-in-law. Sure, we got on each other’s nerves from time to time, but we had great times together. And Lawanna and I experienced our first hours, days, weeks, and months as grandma and grandpa here, an important life passage. We had no idea our lives as grandparents would be like this, but we would not trade what we have. Well, we would, but we can’t, so we won’t philosophize about it.
And it will have been here where Melissa – except in each of our spirits – never spent a moment. It’s so sad that she will never know what we know about these months, except what we can explain to her. I wish these months would have been hers to have these memories, to know what we know experientially about raising West so far. But she doesn’t, and she won’t, except what we can explain to her. But that’s our plight, and hers.
I’ll always be fond of my time here, a truly transformative experience. I’ve loved the neighborhood, the cityscape, the energy, the food. The roof has been great to look out on the city and bay. The sunrises and sunsets here have been spectacular. The drive to Kentfield has been therapeutic. I could go on and on…. (No jokes, please).
But now it’s time to move (on). That is also part of life – constant change and growth. New gestalts followed by new lessons and understandings. I admit to a desire to have a break from such change, to just be able to sit, and to breathe, for a while. But the carpet cleaners just left, and the house cleaners are on their way, and then I have to go out and see Melissichka. The more things change, the more they stay the same….
This weekend was a bit strange. We had an estate sale in which we sold off the replaceable stuff that Melissa had accrued in her young life. The irreplaceable and valuable, of course, we kept. Many of you have been through such experiences. We feel for you. Melissa was/is proud of the life she built. Sometimes, we say our stuff is not important, and we might be right. But it represents a life built, and in Melissa’s case, her stuff was part of a life built well. We are proud of Melissa too for the life she built. As we have said, it has been a meaningful life, and though the “stuff” that was sold might have been the least important parts of that life, it was/is her life nonetheless, and for that we mourn. One (or several people) does not take lightly “selling off” a life, especially when that person’s life is so beloved, and when that person is so beloved. There was very little “junk.” And that is a nice thing.
It was difficult to watch Brian go through this. On his shoulders rests the greatest burden in all this. Estate (and garage and yard) sales are strange enough without all the emotional baggage of this particular one. People want something for nothing. You ask $4, they want it for $1. Sure, you say. It’s yours. But then there might be a very nice piece of furniture, say, a coffee table, for which you are asking $200. And they look at you like you’re some kind of money grubber, especially when you won’t come down. And in the back of your mind you know why you’re selling this stuff. But they don’t, and so you do your thing, but you think to yourself how “untoward” it seems to be haggling over your poor daughter’s (or wife’s) stuff. It just seems weird. And Brian had to handle that all with aplomb and grace, which he did, which we did, but it’s weird. And the whole weekend was like that for him. Hard to watch.
What was not hard to watch, and what turned out to be a real joy, was the number of people who stopped by because they knew it was Melissa’s estate sale, people who knew her, and love her, and miss her. And they cried. And I cried with them. One, whose husband has been battling terminal cancer while both of them continue to raise their adorable 7-year-old daughter, told of how intelligent Melissa was, as they had worked together almost a decade and a half ago. She spoke of how envious she was of Melissa because Melissa could handle the theory of her work with such perceived ease. She did this, crying, while her husband and daughter looked on, listening intently. And her co-worker, who had also worked with Melissa at the same time, spoke of how humble she was about it all, and how gracefully she carried herself. I’d do an estate sale every day if it meant I could hear things like this from such people, and meet such people. And most of these people purchased something, big or small, just so they could have a piece of Melissa near them. That’s when “stuff” that’s “replaceable” no longer is, and Melissa’s life takes on meaning for others, and they carry her with them. That’s when stuff is no longer stuff.
We want to thank everyone for all of the love that has been poured out to Melissa (and us, by extension) in every single way. Milestones, some negative, some positive, continue to be reached. Selling Melissa’s house and her “replaceable stuff” is certainly a negative one, but it had to be done. We’d love, Brian would love, to have to buy her all new stuff as she improves enough for that, if she does. In the meantime, all her valuables have been preserved, heirlooms saved for the future, lovingly and respectfully. We love you, Melissa. We’re sorry we had to do this. We hope you will someday understand.
Grace, Peace, and Love
Papichka (John, Melissa’s dad)
PS Her fountain sits in our courtyard now, so when she comes home, we can take her out and let her enjoy it.
Wow! This month has been a whirlwind for all of us. Lawanna’s dad’s (and Gigi’s husband’s) death and funeral, and the relocation of 2/3 of our family operation to Fresno has kept us hopping. West, Lawanna, Gigi, and Papichka are in Fresno. I came home to do “The First Lady’s Focus,” a radio interview that can be found on KFSR.org’s website (under “Public Affairs”) and to be at the Super Fun Super Run for Melissa. Brian is in SF (and Marin County) with Melissa. This weekend Brian and his brother, Kevin, will be in town to have an estate sale in anticipation of the closing of the sale of Melissa’s house. Friends will be sitting with Melissa in Marin County. It’s all just such a blur. But it’s what we must do right now. All of this, of course, centers on the needs of both West and Melissa. Brian has had to make some tough decisions about all of these things. We support him fully.
Melissa is doing well. Lawanna and Brian were able to persuade Kentfield to keep Melissa for what will turn out to be at least the rest of October and most of November. She has been responding to treatments generally, gaining a bit more control over some of her body’s movements, and she is trying really hard. She and Brian listened to the podcast of my interview, mentioned above and in previous FB posts, and he reported that she smiled and that her body was much more active than normal during interview. That was nice to hear. The interview was in her honor and for her and Brian, so that was gratifying.
West continues to thrive in spite of the chaos. Of course, he only knows this kind of life, but we are keen to give him as much stability as possible. It’s a blast being an active grandparent, but it’s also a reminder that raising kids is for the young. ☺ Seriously, we never imagined it would be like this, and we love it, but it can be tough. (I wanted to sleep some more this morning, but he did not. Guess who won that one).
We will continue to do our best to keep everyone posted. The next few weeks will be a bit challenging in that regard, at least until we get settled in. But know that things are good right now, if odd and new.
As another month begins to unfold, our dynamic story continues to unfold. Most important, Melissa is re-attaining some of her early progress. Her clots have subsided. Infections seem to be leaving her alone. She has had a successful botox injection, which should loosen up her right arm and neck in a few weeks. And she is showing signs of communication and wakefulness we have not seen for a couple months. All of this is great news.
The family is soon splitting up. Having lived in a donated apartment in San Francisco for the last 6 months, it’s time to move. Melissa too will be moving soon, probably in the next month. But since we don’t know exactly where or when or for how long, we have decided to have West go with grandparents to Fresno. Brian and John will split time near Melissa, living in a motorhome. All of this will be unfolding in the next few weeks. October will be very busy. Hopefully Melissa will be allowed a bed in another facility, a sub-acute rehab, and we won’t have to bounce around too much. We’ll just have to see.
The next few months – six or so – will likely be even more challenging than the previous, primarily because it will be difficult to have the family together. Please keep us in your thoughts and prayers.
Grace, Peace, and Love
Brian (Melissa’s husband and West’s father) and John (Melissa’s dad)
The last month since our last update (August 24) has been a full one. Melissa’s return to UCSF was effective. Studies there determined her body allows the anti-coagulants to keep clots at bay. We just found out two days ago that almost all of her clots are resolved. This is very good news. She has also been basically infection-free for the last two weeks, a luxury she, and we, have not had for a while. If we can keep her free of serious infection and clots, she can have a chance to improve neurologically. She does still have hydrocephalus, a build up of spinal fluid in her brain, which is hampering her neurological improvement. It cannot be resolved now with a shunt, unfortunately, for about six months or so because she must be free of the anti-coagulants for a long time before they can replace her bone flap (in her skull, taken out to remove her tumor six months ago) and insert the shunt. They fear bleeding, which the anticoagulants might cause. So, her medical problems, while somewhat stabilized right now, are still serious and persistent.
All of this is countered by the fact that as she has improved medically we have been able to wean her of her pain medications, which has allowed her to be more awake. That is a real plus. Even so, she is not awake much and not able right now to communicate consistently around much other than pain. She has however, been out in her wheelchair just about everyday for the past 2 weeks. The staff here has been able to up her intensity of physical therapy, which should produce gains neurologically. We continue to be positive, with a certain amount of hesitancy.
As always, thank you for considering contributing to Team Melissa. In the months ahead, we will have to begin tapping the funds raised on this site and elsewhere, and rest assured that they will be used responsibly. And if there are other ways you might like to contribute, please contact us.
Melissa has been in UCSF for the last several days. She has been having so many clotting problems we believed, as did her doctors, she needed to be looked at more closely by hematologist specialists. We have done that, and several tests have shown that Melissa is, indeed, able to utilize the anti-coagulants they have been using on her. The clots are still serious, but the treatments are also making a good difference. It takes months for these clots to go away, but at least we can have some peace of mind about the strategies being employed.
The last few days have been good ones for Melissa and the family. She has been a bit more alert than she has been in the last several weeks. More importantly, she is also free of infection for the first time in weeks. Our hope is that when she returns to her rehab facility tomorrow, we can see her take another leap in improvement.
We continue to be thankful for every contribution of any kind to Team Melissa. We have seen our team continue to grow and expand. Thank you. We'll keep you updated. Follow us on Facebook at Support Melissa Carleton
Grace, Peace, and Love
John Farrell (Melissa's dad), for Brian, West, Melissa, Lawanna (Melissa's Mom), and the rest of our two families
The five-month anniversary of Melissa's seizure, brought on by the large benign tumor in her right frontal lobe, passed this week almost without us thinking about it. The tumor, of course, was removed also five months ago. Almost three moths ago Melissa and Brian's beautiful baby boy, West, made his arrival. The combination of taking care of both of them in a city that's not our home is both a blessing and a challenge.
West is doing just fine. He's growing and changing and entertaining us everyday. He is a great joy and gift. Of course, he does not know just how great he is yet, but we are doing our best to bathe him in love and nurture so that he internalizes even without being told just how magnificent he is. Honestly, I think we're doing a great job. He does not understand at this point the loss of not having his mother caring for him everyday, but he will someday know just how hard she worked, and just how diligent we were in trying to get her healthy.
But that, to be honest, is why anniversaries pass without our realization. Seemingly every week something new comes up that gets in the way of Melissa's progress. The neurological side of the equation is most important, and that's why she is in a rehabilitation facility in Marin County, CA. But the medical side of the equation is making it consistenly difficult for her to rehab. In ten weeks here, she has had numerous infections and blood clots, and now she is dealing with a very painful right arm from yet another blood clot. As complicated as Melissa's neurological condition is, her medical condition is just as persistently problematic. And once you're dealing with blood clots, you're talking potentially life and death. As it is, she will be returning to UCSF for at least a week in the next week or so. Hopefully, we can get these medical issues solved so she can resume what is, when she can engage in it, meaningful and effective therapeutic rehab.
We continue to be thankful for every contribution of any kind to Team Melissa. We have seen our team continue to grow and expand. Thank you. We'll keep you updated. Follow us on Facebook at Support Melissa Carleton
Grace, Peace, and Love
John Farrell (Melissa's dad), for Brian, West, Melissa, Lawanna (Melissa's Mom), and the rest of our two families
July 27 was Brian’s and Melissa’s 1st wedding anniversary. Our family trip to Norway last summer for the wedding – one of the absolute highlights of our family history – almost seems a distant memory. Almost. So much has happened since then, and since early March 2014 when our trauma began. Their marriage has been so fruitful, in spite of the last five months.
We all knew that Brian’s staging of an anniversary party for Melissa would be bittersweet. It was, but it was also beautiful, indeed, befitting their love story. Melissa was beautiful, her makeup done by her sister. She had on a beautiful dress. Several musicians from around the Bay Area performed for them and us. The cake was delicious. A professional photographer came, making it somewhat like the wedding. Family was present. And, of course, so was West, in his nautical themed outfit, pacifier in mouth, smiling away on Mommy’s tummy. Brian was the doting husband and father. It was such a beautiful day.
Melissa continues to work hard to improve. Various therapies are being used to help her become more awake and to help her develop greater control over her body. She is making progress. There are also occasional setbacks. For instance, she recently contracted a stomach condition that requires us to keep the baby and her separated. That should pass soon. It’s been two steps forward, one step back, one step forward, one step back. We are all beginning to realize that the “long haul” we have expected is going to be even longer than we thought, and harder than we thought. But our ambivalence is not only holding sadness, but also hope.
You can see some of the photos of the day at Support Melissa Carleton on Facebook. We encourage all who are interested to “follow” us there, and to “share” our page with others. Thank you for any and all help you might give. We are humbled by it all.
Grace, Peace, and Love
John Farrell (Melissa’s dad), for Melissa, Brian, West, and the rest of the family
It’s been a bit of a slow week at Support Melissa Carleton, at least if measured by posts. I have actually been away from San Francisco for almost a week. I make sure to come home to Fresno a couple days every three weeks, to get in some tennis with “the boys,” but also to see my therapist. This week I made a special trip, after doing both of those things on Sunday and Monday, to Los Angeles. Though I have not said so, long ago I began working on a book about our trauma, and about Melissa before it, and I had the great fortune this week of interviewing four of Melissa’s dearest friends who, like Melissa are therapists, and who have known her, worked and trained with her, and loved her, deeply, for about a decade and a half. Who better, I thought, to interview “for the book,” than people who in many ways not only knew her best, but who also had come to know and love her, not as family, but as people with whom her path crossed at some point and who, like us, simply could not let her go? I went “for the book,” and it turned out to have been really for me instead.
One of the immediate realizations I had in the earliest days of this horrible tragedy was about what you want for your children when they are young. You want them to grow up and build a wonderful life filled with good friends and a deep and rich support network. Of course, you want to be involved, but you also know that you won’t be. Well, immediately upon this happening, on gofundme and elsewhere, Melissa (and Brian’s) friends and colleagues jumped into action. And out of nowhere, it seemed, help, significant help, was coming from all directions. And as I said early on to Barbara Anderson, A Fresno Bee reporter, when you surround yourself in goodness, goodness returns to you. And indeed, goodness has followed Melissa in all of this, but for a reason: she surrounded herself with goodness. And so, this week, I had the rare privilege of spending two days in the presence of goodness. But it wasn’t just the goodness of these four wonderful and loving friends – who, by the way, could be multiplied by many, many others she had built up over the years. I also got to taste, to hear stories about, to see tears shed over, to witness to the deepest grief about what the loss – if only temporarily – of a dear friend like Melissa. And what I got to hear about was the vacuum created in the center of this loving circle of friendship by the loss (again, if only temporary) of this beautiful, loving, and gracious soul. It turned out to be a father’s delight, actually, to be able to witness how deeply she is embraced, and how deeply and meaningfully she embraced them, and how painful is the absence of this dear one.
This tragedy is certainly expansive and huge. But one of the hardest things in all of this for me has been witnessing what Melissa has been reduced to. And I don’t really mean her “physical” state, although that has been just excruciating at times. What I mean, and what I want to rectify with posts here and with a book, is that in many ways Melissa has been reduced to a trope – “California Mom in Coma.” And there are all kinds of forces that produce such a thing that are both interesting and frustrating, and will be addressed at some point. But what hurts me the most is that, though you all have come to “know” Brian, and me, and “the family,” and even West, Melissa remains elusive.
We all appreciate our decision to live out our experience largely transparently, not only on FB, but also with our friends “in person.” And we all appreciate the way that we have been embraced, and so generously supported. And honestly, we are gratified that so many people who are paying attention are benefitted and uplifted by our sharing. We are grateful that even in our tragedy, people are encouraged, and that we have been given the opportunity to encourage through our tragedy, or better, with how we have handled it, and shared it. But the one person whose voice has not been heard, the one person who, frankly, is better at what we are doing to support one another than any of us are, cannot be heard. As a loving father who everyday is increasingly more impressed with her and the life she built, I want you to know just what you are missing out on. And so I will be sharing that.
The Melissa that emerged in my experiencing of her with her friends – note the way I put that – was of a truly wonderful, loving, and courageous woman. They spoke of her fearlessness in getting to know herself in therapy and in training. They spoke of her ability to withhold judgment of others so she could not only get to know them, but be there to help them. They spoke, to a person, in tears, of just how big the hole is in their lives and hearts because she is not “there” for them right now, but also of her presence in their lives, as though she were in the room them. They spoke of memories of her, which were almost not memories, because she is so close to them, of places she had sat, and where they had held one another. They spoke of her courage in escaping a fire in Big Sur that might well have killed three of them, as she focused on the problem at hand – getting through the flames. What a metaphor for our Melissa. They spoke of her brilliance, the way she could assimilate theory and apply it in sessions. They spoke of her scrupulous devotion to the privacy and dignity of her clients and patients. They spoke of her wit, and how funny she is. They spoke of her leadership as a part of her community, and the way she committed herself to making sure that the friends got together regularly so they could, in fact, love one another.
There is much more to say, and it will be said, but I wanted to share with you what a privilege it was to me to experience afresh through the eyes of others, through the eyes of her chosen ones, some of her best friends, what we always knew, but also did not know. It may well be that had all of this not happened, I never would have heard from Steve, Abby, Monte, and Julie about any of this. And what a shame, what a horrible shame that would have been FOR ME. Not for them, or for Melissa, because they clearly “have” one another. And now I have something of her, through them, that I might not have had. It’s an argument, parents, to get to know the people in the lives of your adult children if you can, in part so you can appreciate just how wonderful your children are. I’m so thankful I was given the gift of being able to sit with these wonderful people and get to know my wonderful daughter more, and then begin sharing a little bit more with you just how big the hole has been, but also how full her life and friends’ lives have been because of her character.
Grace, Peace, and Love
Papichka (For Brian, West, and the rest of the family)
Melissa has been doing much better since last week's clot scare. Although treating Melissa's clot does not directly impact her recovery from the coma, the treatment does create a healthier place for her to work on recovering. Melissa's vitals have stabilized, her skin color is back to normal, and she generally looks more calm and comfortable. While I can't heal my wife's brain injuries, it is gratifying that at least I can make her more comfortable. In fact she she has been smiling and even smirking the past few days when I have been talking or joking with her. Better yet, when Melissa reached up today with her right hand and rubbed her right eye (a first in four months event), I gave her two thumbs up. In response she gave me a single thumbs up.
Melissa still is unable to reliably communicate with the doctors, our family, or myself. As I have mentioned in previous posts, one of the obstacles to Melissa leaving the category of being in a coma is the need to be able to reliably produce communicative gestures or words. We aren't there yet. But what I have seen in the last few days, and indeed what other family members and now hospital staff are seeing, is Melissa's ability to begin "turn taking." "Turn taking" just refers to the fact that when people converse or interact they can't do everything simultaneously. To have an intelligible conversation means that you have to take turns speaking. I go, then you go, and then I go, and so forth, otherwise we would talk over each other and nothing would be heard.
Melissa has begun moving, in-step, with what people are saying, whether it be questions, instructions, etc. Melissa's movements are necessarily coherent gestures but they are "timed" in a way that has given almost everyone, including her doctors the sense that there is a give and take, even if it is without words or gestures. Melissa has also seemed easier to roust to a place of eyes open. What once required a physical therapist to apply a sternum rub to wake Melissa now just requires someone to say, "Hey Melissa, it's time to wake up." As one of Melissa's doctors put it, "she seems lighter."
I imagine that some of what we are seeing is the result of treating Melissa's clot and especially the infection that had made the clot septic. Melissa is a different woman when she does not have a fever. Indeed, even a small temperature rise (e.g. being in the 99 degree range) can obliterate Melissa's wakefulness and ability to exert effort. But Melissa is also being supported by some drug therapies that work on her brain's dopamine networks. But the problem with trying to figure out what is happening with Melissa is that time can always also be the explanation. Brains heal with time and so it is always difficult to explain changes in Melissa's state of consciousness by pinning them to this or that drug or this or that therapy. I think what generally happens is that if a treatment does not "hurt" or impair Melissa and she continues to have small improvements, then it suggests that the treatment is at least consistent with Melissa's trajectory.
I have also turned to technology for some help here. As you may recall, some months ago, Melissa's physical therapy had been de-escalated because according the the measures used at UCSF, Melissa was not improving or "participating" in her therapy. I argued, forcibly, that this was not the case and that the "bedside" measures that therapists and doctors were using where not sensitive enough to measure Melissa's changes. Initially we got push back that I and other family members were not being objective.
Fortunately, I have been lucky to have something of two careers in my life. In addition to be a deputy sheriff working uniformed patrol, I also have a PhD in sociology from UC Berkeley. By good fortune I also specialized in social psychology. By sheer luck, I spent two years on hiatus from being a deputy sheriff to work in the Defense Department on how to measure behavior using remote and wearable sensors. This all came together to mean that I could advocate for Melissa in an unusual way—through affordable, non-invasive, but cutting edge technology.
So I turned to two companies for help: ADPM and Sociometeric Solutions. ADPM makes small wearable sensors about the size of a wrist watch. These sensors track movement (amplitude, frequency, axis etc.). Ben Waber, an MIT researcher who also is president of a company called Sociometeric Solutions, volunteered to help analyze the data. Although Ben is still putting the final touches on some purpose built software for monitoring Melissa's movements, he was able to analyze the ADPM monitor data and produce some very quick results to show that what we were seeing was, in fact, supported by objective and continuous measurement. The data also could show when Melissa was most "awake" and most "asleep" and therefore could be used to guide when neurologists or therapists can do their assessments against an objective understanding of Melissa's "waxing and waning" wakefulness.
The initial results that we had, as far back as May, was compelling enough that Business Week featured Ben's analysis of the data in a piece on how wearable sensors may shape the future of hospital care.
Please take a look at the article and share it. Keep in mind that the data is not "current," but from nearly two months ago, but it is positive. We have much more data now and there is every reason to think it will show that Melissa's trajectory has continued to improve, often with clear cut transitions.
My other hope is that other patients and families can benefit form leveraging similar affordable technology. All that would be required is a small amount of further clinical research to help validate the clinical implication of the measure and that tested the techniques alongside standard bedside assessments.
Data, tech, and science aside, the real story, today, for my family, was that we got to watch Melissa touch her lips, rub her eyes, scratch her chin all in the same day and with both hands. It is an incredible feeling for me to witness these steps forward. While far from portending Melissa's full recovery, it was a tangible sign that Melissa has had some recovery.
I love you sleepy wife. Keep up the hard work so you, West, and I can go home together soon!
The last week has been eventful – very, and very sad and scary. The central drama surrounded the discovery of one dangerously large blood clot in Melissichka’s pelvic area. She likely had it for a long time, perhaps several weeks. She had to make a trip back to UCSF from her rehab facility. Our fears were multiple. To say the least, the clot was life-threatening. We were all very concerned. Thankfully, the doctors at UCSF yesterday easily inserted a filter in the vein above the clot to catch any smaller clots that might break off from the larger one and threaten Melissa’s life. As it turned out, we spent more time trying to get her transferred than the amount of time she spent out of rehab. Basically, she lost a few days of rehab, rather than weeks, and that’s good. Our fears that she would lose weeks of rehab did not materialize, and for that we are thankful. More importantly, our fears we might lose her also did not materialize. But we continue to wonder about the eventual extent of her improvement, something that only time will reveal.
And what all of this means is that the long haul has really set in. The excitement surrounding lil’ peanut’s (West Nathaniel -- see picture, in Melissa's arms) arrival has now given way after six weeks to the normal “work” (not without boatloads of enjoyment) of taking care of him – colic, feedings, taking him to see his mom, up through the night with his colic, etc. And our normal day also includes traveling back and forth to be with Melissa.
As the weeks after West’s birth and Melissa’s move into rehab mode become months and probably years, the expenses will continue to add up. We are so thankful for all the generosity that gofundme has allowed. And thank you again to each of you who have contributed, and who will in the future. People who suffer from things like Melissa is dealing with require so very much money, even after all the insurance funding has been exhausted. We will do everything in our power to keep Melissa at home with us after her rehab is exhausted, should she not improve as much as we would like in the next several months. It will be a privilege that your generosity will have enabled, and, again, for that opportunity we are thankful to the almost 1,300 gofundme contributors, many of whom are friends, but many of whom are strangers. Regardless, you are all “angels,” and we have so much love in our hearts for you.
We will keep you posted on gofundme more regularly from now on now that our lives have evolved into a bit more “normal” routine.
Please continue to follow us on Facebook (Support Melissa Carleton), “like” and “share” those posts on FB and in emails, and please do the same with this site as well.
Grace, Peace, and Love
Papichka (John Farrell, Melissa’s father), for Brian, West, Lawanna (Melissa’s mom), and the rest of Melissa’s family
Katie Utehs, a reporter from KTVU 2 in San Francisco, came and spent the morning with West, John (Papichka) and I at Melissa's hospital. I very much appreciated that Katie spent time trying to understand the complexity of Melissa's care and recovery. Katie also committed a significant amount of her time to sort through the confusion surrounding disorders of consciousness, which have come to replace more popular notions of what defines a coma.
Katie was easy for us to share time with. She was very good humored about West's active participation in the interviews. At one point I ran short on hands while trying to juggle West and Melissa's care and Katie unhesitatingly jumped in to lend me a hand.
Thank you Katie and KTVU for sticking with us and continuing to believe that Melissa's condition and struggle is important to share.
Please share this piece and the Support Melissa Carleton page with your friends.
A lot has happened in the last month. As you know from earlier posts, baby West made his long-awaited appearance and brought even more joy than we expected. He is one of the two focuses of our lives right now. The other is his mother, Brian’s “sleepy wife,” as he calls her affectionately, West’s mom, and our lovely and beautiful daughter. She has moved from the hospital she was in to a new rehab facility where the doctors are trying to awake her fully from her coma. The family is living near her, but far from home, and Brian and I and other family members are doing everything we can to provide West with a home filled with nurturing and love, and at the same time provide Melissa with as much support and nurturing and love as she needs too. This means regular visits with West, but also important treatment and therapy, and rest. As exciting and scary and sad as the last four months have been, we are now settling in to what will be a very long haul, a very long and difficult road, lasting months for sure, and possibly years. We just can’t know.
What we do know is that we continue to be overwhelmed with your goodness. Thank you, from the absolute bottom of our hearts.
And please follow the family story on Facebook, at “Support Melissa Carleton.” Please “like” the page and share it as much as you feel the urge.
For Brian and the family -- John Farrell (Papichka), Melissa’s dad
We want to share what’s been going on. As you know, Melissa moved into her new rehab facility, beginning the long haul to recovery after West’s birth. The family has been shuttling back and forth daily, being introduced to her new regime under the care of the best medical team we could find. Brian continues to be at Melissa’s side, daily, as do Papichka (M’s dad), Lawanna (M’s mom), with some exceptions noted below, and West. Other family have been coming and going, helping with feedings, and diaper changes, as have a few friends. Basically, the “new normal,” at least for the next couple of months, is becoming our normal. But this is a family and friends (love) affair with Melissa and West and, as you might imagine, as Brian is able to stay in San Francisco because of the generosity of others and to be by his beloved and beautiful wife’s side and begin the arduous task of raising his son, others on Team Melissa have some “mundane” things to do.
The ripple effects of a tragedy like this go far. For example, Melissa’s baby brother graduates from high school Tuesday. He will do so without his greatest supporter, Melissichka, there to share in the rite of passage. She would be sad because of this. For his part, Spenser is being very mature, knowing that his sister loves him, and supports him, and would want to be there, and to take him out to dinner, just to talk. Mama Bear, unlike me and Brian, has to continue working, back in Fresno. She is so very torn, wanting to be in SF everyday to be with West and Melissa and Brian, but she has to keep working. I, a university professor, am taking family medical leave, adding to the benefit of having “summers off,” and will not have to return to work until at least January. Lawanna and I have had to leave Melissa’s little brothers at home and be in SF as much as possible. They are having to “grow up” fast, and we are “turning them loose” earlier than we would have wanted to, but sometimes these things must be done.
As you can see from the pictures with this post and the video from ABC 30, Team Melissa is growing all the time. Words cannot express how thankful we are for our friends. In this case, it was over 200 tennis players with whom Lawanna and I have shared great times over the past several years, coming out to play tennis is 104 degree heat to support a good cause. It’s a great heartwarming story of friendship and mutual respect. Some of my tennis playing friends got together and decided that they wanted to do something to help our family and they proceeded to put together the Melissa Carleton Doubles Challenge, a fundraiser that would charge $25 per player per court all day long to donate to Melissa’s family. Just short of 200 spots were filled by people who love us and love Melissa, and they and others contributed even more. I played in 6 matches for Mellissichka, being on the court for over 10 hours. The picture of the 6 shirts that I wore and sweat in throughout the day represent my foray into trying to survive the heat for Melissa. Others of my friends played in as many as 4 or 5 matches. We had music blaring – not your typical tennis thing – and people were having so much fun. They put together their own foursomes, so some scores were being settled. It was so much fun. More importantly, it raised just under $9,700 to go toward Melissichka’s future medical expenses. What a blessing to have generous friends like this. Played at Fig Garden Swim and Racquet Club in Fresno, with members from other clubs like Sierra Swim and Racquet Club and Copper River, and friends from public tennis clubs as well, it was just the best of days – in the worst of times.
There were moments when, during play, I would think of Melissa. No generosity can fill the void of a daughter or wife who is “lost” to you, if just for the moment. But the gratification I felt, and feel, for my friends who would do this for us is one of life’s great pleasures. Short of a loving family, I can’t think of anything more important than being surrounded with great friends. To the committee who organized it (Pete and Chris Nunez, Paul Jelmini, Kathy Villareal, Lori Mascarenes, Nghi Dang, Doris Harpain, Kathy Gorman, and Gil and Mary Beth Cabrera) I/we will be forever thankful. Dane Clegg, Maureen McKenna Solomon, and Sarah Sigg of Fig Garden Swim and Racquet were instrumental also. Go Team Melissa. The picture of the people on the bench in front of the pictures and placards that illustrate the beauty and the substance of our lovely daughter’s life are these wonderful, caring friends. I love you, guys.
So, counting the contributors to the Gofundme site (1,256 so far), Melissa’s friends at Soup, all the people who have purchased things on the baby registries, people who have purchased and/or delivered meals, her incredible medical personnel, Team Melissa is now in the thousands of “angels.” Add to that all the people who are praying for Melissa at churches and synagogues, and others who are sending their positive energy, and I’m confident we are up into possible hundreds of thousands of supporters and members of Team Melissa.
Very early on in this tragedy, I said to a Fresno Bee reporter that when you surround yourself with goodness, goodness will come back to you. In Melissichka’s and Brian’s case it has. Beginning with Melissa and Brian’s friends, family, and co-workers, and then branching out in a myriad of other directions, we continue to be touched in our tragedy.
But ours is not the only tragedy. It’s happening all around us. Others are suffering too. It’s an argument for thankfulness and goodness and love. We are not entitled to the goodness of others, but we continue to receive it. Melissa would want to say thank you, and thank you again, so we do. But not only for that. We do it because we are truly appreciative of all those who support Team Melissa. And Melissa would want us to keep our eyes open to the suffering of others, and so we do.
Come on, Melissa!!! We are your biggest fans. Keep working hard, honey bunny. You are the best.
(Note: This post is lengthy. I may not be able to post again for days since I am exhausted and overwhelmed.)
My son, West Nathaniel Lande, made it to us. I have him laying next to me, swaddled up on a pillow. With West's arrival so much of what has become familiar has disappeared. The world looks brand new again. When Melissa slipped into her coma, I felt like I had lost everything important to me—my wife, our home, even our dogs, Henry and Padget. West's arrival is the beginning of a fresh start for Melissa and I. My life, rather, our lives, are still going to be hard. But with how unsettled and unmoored our lives had become we are, ironically, now unencumbered by our past. And West, my boy, you are the eraser that leaves us with a clean sheet of paper to start sketching a new, very different picture of our lives.
As my father in-law has written, Melissa has come back a bit to us since Thursday. Just hours before West was born, I was with Melissa and telling her how much I love her and trying to allay what I could best discern as her anxiety. Melissa's eyes were wide open, she was chaotically moving both her hands. But then Melissa reacher her right hand up to my face, for the fist time in 10 weeks, touched my check and pulled me close. I psychologically was not able to take in that this had happened until later, several hours after West was born, and Lawanna and Melba (Melissa's grandmother) ratified that they had watched Melissa's deliberate effort. Last night, after West had breastfeed with his mother, I stayed with Melissa to talk with her while West went to the nursery. I told Melissa how much I missed her and how much her empathic touch had meant to me. Melissa opened her eyes again, looked at me and puckered for a kiss. I could not help but kiss her and cry.
Since Thursday, Melissa has persisted in maintaining a higher level of wakefulness and movement. This is encouraging but also comes with difficulty. Melissa also, unequivocally, experiences much more pain and discomfort now. She is seems much more confused and terrified by what is happening to her body as she recovers from giving birth. More than ever, I think she needs emotional and psychological support. Of course her family and I try to provide the best comfort we can. I don't know what, professionally, can be done to support her psychological well being, but if she continues to recover I feel that this must be attended to as much as her physical therapy.
West, my boy, he is so healthy and strong. He sleeps, he eats, and gives me diapers to change and a little guy to swaddle. He does skin-to-skin time with me several times a day. What a pleasure it is to feel him. The UCSF staff, Melissa's family, and I, work hard to give Melissa the opportunity to nourish West. This is a challenge, but one we, and Melissa are up to. I ask that people respect our privacy on this matter and understand the medical and logistical complexity of helping Melissa be a mother. What we and Melissa can safely do changes daily and ultimately, Melissa and West are the final arbiters of what we can do. That said, watching West get "blissed out" after a session with mom is the high point of my day. I could spend hours watching West look so peaceful and content, with a full belly, and his cheek on his mother's chest.
Of course, I am relieved West joined me as a healthy little guy. While that abates my worries about his being ill, it does not change the fact that now life is much harder and complicated. I have to care for two loved ones instead of just Melissa. I hate having to "choose" how to spend my time with Melissa and West. It is profoundly unfair and painful.
Yesterday, one of the pediatricians asked me, "How is it that you still have a smile on your face everyday?" The past 10 weeks have been terrible, and I have missed Melissa so much, and I have lost so much sleep worrying about whether or not West would live or come to me gravely disabled. But with all that said, I have been happy the past 10 weeks. I have been happy that I was injured at work to the to the point of being placed on medical leave. This has meant that I could take care of Melissa every day. Taking care of Melissa, advocating for her, soothing her, and above all, loving her gives me not greater satisfaction. At the end of every day I go to sleep (when I can) knowing that I have done everything I can for Melissa and my then unborn son, and as competently as I can. I try to love her well. I am happy because as difficult as my life has become, I get to share the daily struggle with John and Lawanna who have shown me not only what the unconditional love of a parent looks like, but have shown me what amazing family, friends, and roommates they are. I enjoy the relationship I have with John and Lawanna. They are fun, humorous, emotional, strong, fearless, and responsive. I am thrilled to have my little brother Kevin by my side so much of the time. His humor is much appreciated and his tenderness with his nephew is a reward in and of itself. I miss my family and now, because of this tragedy, have them much more fully in my life and now, as I had always hoped, in West's life. How could I not be happy about this?
And maybe, being deputy sheriff has had a protective effect by giving me perspective. In my daily work I see so many individuals and families in the midst of personal and emotional crisis. I have bee blessed and cursed to see families that have lost everything. But this background just thrusts to the foreground how lucky I am for my family and the support I have received form others.
I also am just so relieved and so happy to have my boy West with me. I get to love him now too. And part of the love, so much of why these past days I smile, that is because I get to be the one to share West with his amazing mother and to introduce West to a wondrous, complex, and changing world. I am not religious, but to borrow from Carl Sagan, "For small creatures such as we the vastness is bearable only through love."
West, my boy, I am your dad, and I love you. We live in a magical world where, somewhere, something incredible is waiting to be known. And I am so happy to share this world with you... Let's go exploring!
Brian (Melissa's husband and West's father)
Helping One Woman (HOW) San Francisco is honored to announce our May 2014 recipient: Melissa Carleton!
We are so excited to have you all join us at Izzy's Steaks and Chops at 6:30pm-Monday, May 19 2014, in SF for an unforgettable night! Please bring friends, family, co-workers, ANYONE!!!
$40.00 cost for a delish dinner, a $10.00 minimum suggested gift donation to Melissa, and an opportunity to win wonderful items in our opportunity prize drawing: Items from Two Skirts, Laline, Izzy's, selective wines, handcrafted jewelry, artwork, and much more! See you there!
Hi everyone! So baby is coming on Thursday. Along with the usual new-baby craziness Brian will have a lot of logistical issues making sure baby is at the hospital with Melissa as much as possible. If anyone is interested in sending him a meal once the baby arrives, the Take Me A Meal site is active ( http://www.takethemameal.com/meals.php?t=TWRB5424) and you can sign up for a day. This works if you are local or not (you can sign up to have takeout delivered). Instructions are in link or you can email or comment if you have questions!
In 6 days, on Thursday, May 22nd, Melissa is scheduled to give birth to our son. Two months ago our doctors and I were struggling to ensure that our son would survive and hopefully stay in the womb until he reached 28 weeks old. We had been extremely worried that baby boy had been injured by Melissa's brain event. I am so fortunate to now be expecting our baby boy to be full term. By all indications our son is active and healthy and I have no more reason to worry about my son's health than any other parent.
I am very excited to meet our little guy. It seems that Melissa may also be able to meet our son. Melissa has continued to have incremental improvements, especially in her ability to be aware of the world around her. Melissa has made some gains in her level of wakefulness but these improvemetns are episodic and typically short in duration. With the hard work of Melissa's speech/physical/occupational therapists we have also seen Melissa's ability to communicate, when wakeful, become more reliable and unequivocal. Melissa also has demonstrated visual competency when in a wakeful state. She can track objects and faces, look toward sounds and even objects that are put on her skin. While none of these improvements in and of themselves is decisive for Melissa's recovery, they have allowed us to connect with Melissa, enough, to be able to determine that she is aware that she is pregnant, that she will be giving birth soon, and that the baby is alright. I am optimistic that Melissa will be able to have an experience of our son and to know him.
Just as our lives are about to change for the better next Thursday, our lives will also become more complicated. All my heart has been poured into taking care of Melissa. Soon I will be giving that same love to our son. Trying to balance the needs of Melissa and our son will be challenging, especially once we take our baby boy home and begin to prepare Melissa to discharge to another hospital to begin what we hope will be a successful journey to recovery.
Juggling Melissa's care, finding ways to keep Melissa and our son together, childcare, work, and even treating my own work injuries is daunting. I am not alone in this. I have my sister and Melissa's sister to support me. I also am so lucky to have John and Lawanna in my corner and being so willing to radically change their lives to help care for their grandson and their daughter.
My sister, Kate, sent Melissa a blue bird cake topper to join the wedding cake toppers from our wedding. I explained the bird to Melissa and put the topper in Melissa's hand so that she could see it and feel it. She clutched it in her hands and manipulated it with her fingers. It was amazing to watch.
I can't wait for next week to arrive so that I can start our new adventure. Can't wait to meet you son!
The staff at UCSF has cared not only for Melissa's medical needs but also worked to ensure that Melissa has special memories of her time carrying our son. Nano Visser took these maternity photos of Melissa and her beautiful baby bump about 10 days ago.
While all the past 7 weeks have been full of emotional ups and downs, this week had a couple of big sad moments and happy anticipations. I returned to our home in Fresno for the first time in 7 weeks. Each room in our home is loaded with so many happy memories. It was painful to see our beautiful home packed up to move. The rooms no longer look lived in and the rooms echo with emptiness. We had started turning one of the rooms into a nursery for Baby Boy and knowing that we won't be able bring our son home to "our" home is crushing. The other side of this is that the packed up rooms in some ways made it easier to be home. If all of Melissa's papers, books, and belongings had still been where I last saw them, I think I would have felt like she might come strolling out of the bedroom to sit with me in the kitchen. That tangible feeling of Melissa's presence would have made being home too painful. But seeing our house packed and emptied made concrete that we are moving on to a new life with new plans, new hopes, and, somewhere, a new place to build a home.
The high point of being home was being able to steal a few hours with our dogs, Henry and Padget. I was able to take them for a walk, hang out like normal, and even have the dogs hang out with me while I dinner over at Papichka's and Mamma Bear's house. I love our dogs and wish they could still be part of our daily lives. When the dogs were dropped off at the house, Henry came and gave me his usual greeting and then began his search for Melissa. He checked every room in the house and when he couldn't find her he came back and whined. I know how you feel buddy boy.
I also found some knick-knacks that I wanted to take with me, like some Norwegian troll sculptures that Melissa had brought back from Norway, our wedding cake toppers, and pictures of Melissa.
The other happy anticipations involve Baby Boy. Baby Boy made it to 34 weeks! When Melissa first arrived at UCSF, we were expecting to loose either Melissa or the baby. That has not happened. Once the doctors realized we were going to be able to keep both Melissa and Baby Boy, they had hoped to get Baby Boy to 32 or 34 weeks. Well 34 weeks has come and, on Tuesday, we met with all of Melissa's doctors. Melissa's doctors told us that they want to try and get Baby Boy to full term. In fact, today I was given confirmation that Baby Boy now has a due date, May 21st, and he is expected to be born at 37 weeks - full term.
There were also many tender moments during the past week. I watched Papichka, who is a large burley guy, help gently wash and comb Melissa's hair. Melissa also had a musician come and play songs for her. But best of all, Melissa was able to participate in a baby shower. Melissa's friends and mother had been planning a shower for Melissa that had to be canceled. The nurses felt that it was not fair that Melissa miss out on such an important part of expecting to become a mother.
It is 19 days until Baby Boy is scheduled to arrive. Family is coming to town to begin the preparations for Baby Boy. I am also preparing to be Baby Boys father... very very soon.
See you soon little man! I love you sleepy wife!
Brian Lande, (Melissa's Husband and Baby Boy's soon to be father).
Baby Boy has met another Milestone. On 4/17/14, Baby Boy made it to 32 weeks! This means that Baby Boy's chances of facing challenges if he is born are very low and typically very manageable by the neonatal specialists. Baby Boy has also grown substantially and is well over three pounds.
Baby Boy and Melissa also have new type of relationship. Although Melissa is still generally not "awake," she is even more sensitive and responsive to the Baby's movements, which are often quite dramatic. Baby Boy is also big enough that we can actually feel his hiccups through Melissa's baby bump.
My goal, as Baby Boy's father, is to support Melissa's health and well being so that Baby Boy can stay in the womb for another month or so, until 36 or 37 weeks. At that point, it is unlikely that the OBs will let Baby Boy stay in the womb any longer, but, Baby Boy will likely need very little support once he is born. This means that Baby Boy may need very little or no respiratory support and have a very brief stay in the NICU.
My sleepy wife, remains deep in her slumber. But, Melissa continues to gain strength. During her recent physical therapy sessions, Melissa has begun being able to support her own head while being held in a sitting position at the edge of her bed. The durations during which Melissa can hold her own head up is still small, but it has increased from 7 seconds all they way up to 20 seconds over three PT sessions.
Today, Melissa was able to reach up with her left arm towards her face and, with her index finger, wipe saliva off of her lip. She did this twice and it is probably the most purposive and functional movements we have seen.
One of the challenges Melissa faces, and that we as her family face, is discovering the level of her ability to interact and communicate. Over the past few days we have begun trying to reorient ourselves to what aspects of the body and world Melissa has control over. Since Melissa's strength, wakefulness, and coordination varies "” often independently of each other"” it is not so easy to establish what is and is not purposive and under Melissa's control. Sussing out how to best connect with Melissa is probably our next big hurtle while we wait for Baby Boy to arrive.
For Melissa I sense that she suffers through these changes. I am increasingly confident that Melissa hears and comprehends what is going on around her. Further, she seems to be able to fixate on faces, and possibly see. But I fear that she is able to understand much more than she is able to control her body to act. I can only imagine that, for Melissa, she experiences an enormous amount of frustration at not being able to control herself or the world around her. I hope that I am wrong. I only want peace and happiness for my sweet Melissa, but I understand that this may be a period of suffering and struggle for Melissa, even if only a transitory state.
We have other hurdles to face as well. Melissa and I are not the only people effected by Melissa's condition. Melissa's parents, John and Lawanna, have had to re-organize their lives around supporting Melissa, Baby Boy and I. This in turn effects Melissa's brothers, Zack and Spenser, who have to contend with a new family dynamic. When Baby Boy arrives, and I need help raising our son, things will change even more, and the complexity of juggling housing, work, Melissa's care, and child care will only compound for all of us.
I thank everyone again for hanging in there with us. We have many months of struggle to go with no certainty as to the outcome of our efforts. We will be tenacious in our care for Melissa and we look forward to the perseverance of your support.
Hey there baby boy! This photo of your profile was your birthday gift to your mom on her 39th birthday!
It is hard to believe that a one month ago Melissa fell into her coma. Since then, she has still be a great mom to Baby Boy. To my eyes, she is getting stronger every day, even if she has not yet awoken.
Melissa's had a small but sweet birthday party in the Neuro ICU. Present with her were her mother, Lawanna, her sister Sarah, her friend Carrie, and a large number of ICU nurses, physical therapists, and occupational therapists. We read Melissa the birthday cards she had received and opened her presents for her.
The highlight of the birthday was the Physical Therapists and Occupational Therapists moving Melissa into a special wheelchair so that she could sit in front of a large window that overlooks the Golden Gate Bridge. I don't know how much Melissa could see, but she did seem better able to fix her gaze on faces and objects. Melissa's head rested on a "police car" blanket that Sarah made for Baby Boy and one of the ICU nurses put a flower in Melissa's hat.
I hope that at next year's birthday, Melissa is able to blow out her own candles and open up her own gifts.
Yesterday Melissa's friends threw her a benefit concert in Oakland, featuring one of Melissa's favorite bands, Hot Buttered Rum.
Melissa would have balked at having so much attention focused on her. At the same time, I know that Melissa would have been the first person to organize such an event if misfortune had struck one of her friends. I hope that Melissa will one day awaken so that she can overcome her modesty and accept the good intentions and care that well over a hundred supporters to her and Baby Boy.
So many people love Melissa and showed up to support her. It is one thing to know that people care for Melissa and quite another to see and feel that love directly.
I realized yesterday that even though I cannot connect with my wife in the way I want, and that I should be able to, that I nonetheless was able to recapture some semblance of Melissa's presence just by being at the gathering and immersed in her friends.
So many people, most of whom I did not know, where able to share with me their Melissa stories. These small islands of connection to Melissa gave me a palpable sense of Melissa's presence. Melissa has touched so many people that it has given me a new sense of her. And those hundred small reveals gave me a sense of an evolving relationship with Melissa, as if she were still walking side by side with me. What a surprising gift!
I don't get to feel "good" much of the time these days. So I cannot express how pleasurable it was just to feel "good," laugh, and discover new friends.
Thanks to all who showed up to support Melissa and our baby, and to all of Melissa's amazing friends who took the initiative to make this benefit concert a sucess.
With love and gratitude,
Brian Lande, Melissa's husband
Today the Fresno Bee ran a story about my families situation. I want to thank the Fresno Bee, especially Barbara Anderson for writing a very sweet and considerate article about Melissa, Baby Boy and I. Tracey Correa also did an amazing job of reaching out to the local press on my families behalf and I thank her for taking the initiative in trying to share Melissa with the world.
Melissa and I have always been very private people. Partly that is just how we are predisposed and partly because we both have careers that require privacy and modesty. It is not easy to have our lives so exposed when I feel that we, as a family, are so utterly vulnerable.
I am grateful that in addition to the support we have been receiving, that friends, family, strangers, and even journalists have been gentle with my family and and have respected some very necessary personal boundaries.
Melissa has strong roots in Fresno and is deeply embedded in the community here. I am much newer to Fresno and have not been able to get to know Fresno as much as I would like because of having to work outside the county. I am very proud to belong to a community, like Fresno, that is caring so well for my family.
Melissa's parents have left town as has my little brother. This is my first evening alone in San Francisco in nearly three weeks. I am spending the night sitting with Melissa, talking to her about getting ready for Baby Boy and listening to rhythmic sound of the little guys heart beat. I am also a front row spectator to Melissa's small achievements. The past few days I watched my Melissa begin coughing on her own, meaning that she is beginning to protect her own airway. Melissa also has become more active, with her hands crossing her midline and occasionally, even reaching up to touch her own beautiful face. Melissa's muscle tone is also beginning to relax and Melissa is looking more peaceful and comfortable.
Tonight I am joined by Melissa's excellent night nurses, Deborah and her student Tori. The nurses here engage Melissa at every opportunity, talking with her, moving her limbs and carefully watching her heal and change. One of Melissa's dotting nurses, Dorte, even has taken up maintenance of Melissa's voluminous, thick and beautiful hair. Melissa now has a gorgeous braid reminiscent of Dorothy from the Wizard of Oz.
My sister had reposted this photo that her husband, Steve, had taken of Melissa and I a couple of years ago. We had been dating for just a year and Melissa and I went to Las Vegas to meet my sister Katherine and her husband Steve for the first time. We had a great time and it was the beginning of our two families blending together.
Not much new information to share. Melissa is largely the same but with some new muscle movements and a lot more coherent global body movements. We are hoping that slow and steady will win this race. Baby is still strong and active and Melissa definitely is aware of his presence and responds to his movements.
Some of you have noticed that the updates we have been posting on the Support Melissa Carleton Facebook page are not posting to this web site. I am working on figuring out how to remedy this. In the mean time, here is are most recent update from 3/20/14.
Much has happened in the last two days. We have been trying to focus on ourselves and to manage our emotions, which have been all over the place, for a million reasons. Every little thing seems to matter as each day unfolds.
Yesterday we met with a team of remarkable doctors. They helped us understand what happened, what it all means, and that each day could and would change things. Indeed, although Melissa remains in a coma, much has changed in Melissa's condition in the last two days -- for the good. She is responding still to some commands. She is opening her eyes too. This is important because it has to do with waking and sleeping. She occasionally moves a thumb according to command. Today we watched with great excitement as about 5 nurses helped Melissa sit up at the bedside. While that was going on, we think she might have moved her tongue some by command. It was very exciting.
Importantly, yesterday, we learned that the doctors from Neurosurgery, Neurology, Obstetrics, Intensive Care, and Neonatology believe that Melissa's brain event did not, likely, harm Baby Boy. This has been a huge relief. Baby Boy is not out of the woods yet since he may still come to us premature and a lot depends on Melissa's continued stable and slowly improving health. But he did make the 28 week mark today!
Without getting into private and technical details, Melissa's trajectory of improvement is slow, steady, and and gently upward. The doctors will not and could not make a prognosis about Melissa's condition. They reiterated that they just don't see many patients like her and they cannot extrapolate from their large clinical pool of traumatic brain injury, seizure, and stroke patients. However, as long as Melissa's trend continues, it's all good but incremental. It will just be many weeks or months before we have any certainty about Melissa's condition. Hang in there with us.
Many of Melissa's supporters have been asking for an update. I appreciate your patience. As you can imagine, I have been very busy trying to cope with what has happened and trying to begin to slowly and cautiously reconstruct our lives.
At this time Melissa remains in coma. However, Melissa's vitals have stabilized and she has recovered from a significant lung injury related to her brain event. Melissa is proving to be a great momma even in her current state. Melissa's healthy and recovering body is providing a safe and nurturing environment for our baby boy. Baby boy, himself, appears to be developing normally and is still hitting his growth benchmarks, and the obstetricians are slowly growing more confident that baby boy may be born without complications. A high point for baby boy was an ultrasound where, for the first time, I was able to see an image of his face. Baby boy has Melissa's nose. Now that the sedation has worn off, the little man likes to spend his time moving about the womb and causing the OB nurses to run in to readjust the fetal heart rate monitors.
I thank all of you who have asked about how I am doing. Although I am feeling a great amount of grief and sadness, and in no way can I say I am doing "okay," I can confidently say that I have a lot to fight for. I am constantly with Melissa, her family, her nurses, and doctors while we try to give her and baby boy the best care we can.
Thank you all for you love, good wishes, and support.
Brian Lande "” at UCSF Benioff Children's Hospital.
Wow!!! Day 2 and we've reached our goal, Lets try and double it!! Brian got to sleep by Melissa's side last night, and today her body is beginning to show movement. We will continue to pray Melissa wakes up soon. Keep the positive thoughts and prayers coming! Go team Melissa! You all are so awesome!
I am extremely thankful and overjoyed by the overwhelming response. Team Melissa is going strong!! Donations are rolling in and with each one Brian and his family feel the love and support as their financial burdens lessen. It's amazing what a group of people with so much love and generosity can achieve. Thank you all so very much, lets keep this going and spread the word. Go Melissa!
Brian and Melissa are a match made in heaven. Brian is a deputy sheriff and Melissa is a Licensed Clinical Social Worker who does family, couple's and children's therapy. Not long after their fairy tale wedding in July 2013 these two had great news. They were expecting a baby boy in June 2014. Melissa's pregnancy started well enough, but eventually became problematic, and after a few months of headaches their world came crumbling down when she was diagnosed with a brain tumor. Before the tumor could be removed, on March 11, 2014, she had what would turn out to be a debilitating seizure. She was rushed in for emergency surgery, but she slipped into a coma, in which she remains. For 10 weeks Melissa, in a coma, struggled to keep herself and her unborn child alive. On May 22nd, 2014, against all odds, Melissa, still in a coma, gave birth to a healthy 37 week old and 5lb 9oz boy, West Nathaniel Lande. Melissa has fortunately been able to move to a rehab hospital, where she is fighting to wake up. Brian and Melissa's family remains daily devoted to Melissa and West. They know that getting Brian's wife, and West's mother, home and healthy is far in their future. Your entire donation will go to the family and will be spent on Melissa's care, present and future. With your help we can keep Team Melissa going strong. Along with you, we say, Go Melissa!!
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