Posted on October 3, 2015
Posted on October 3, 2015It's been four weeks since Steve's death. I miss him so much. In eleven years, there was rarely a day that went by without talking to each other or seeing each other. I mean, it's so hard to grasp...where did he go?
Things are sort of getting back to a new "normal", and it is nice not to be a vibrating stress ball every single second of every day. But slowing down inevitably comes with it's own set of consequences too. I'm learning the differences between the grief I experienced in the past three years when Lila was really sick, and then when he was dying, and the grief now since Steve died. For one, there is no real lasting comfort. I can't turn to him and tell him I love him anymore and see him smiling back at me or squeeze his hand, which always made me feel better in those moments. Another difference is the tidal waves of grief that strike with no warning, or sometimes it's more like a tsunami that there's no running from. It hurts more and more each day away from him and his life, and I find myself trying to sidestep this big gaping hole where this gregariously funny, loving, devoted, hardworking/hardwired, manic, and sometimes very sick and sad person use to be. This person who knew me better than anyone else in the universe besides myself. The only other person here besides myself who knew what it was like to take care of a medically complex child under such a unique set of circumstances. We shared the burdens and responsibilities for over a decade, and now well...it all falls on me.
I took my love, and I took it down
I climbed a mountain and I turned around
And I saw my reflection in the snow-covered hills
Till the Landslide brought me down
Oh, mirror in the sky what is love?
Can the child within my heart rise above?
Can I sail through the changing ocean tides?
Can I handle the seasons of my life?
I don't know...
Well I've been afraid of changing cause I
Built my life around you
But time makes you bolder
Children get older
I'm getting older too...
- Landslide/Fleetwood Mac
In the past few weeks, I have been drifting to our old neighborhood (Ravenswood/Lincoln Square) when I had the chance, eating and walking my way through as if in a trance. It seems I have a memory on every corner, and walking every inch of that area feels like my way of saying goodbye to our old life together. That area is so different from where we live now, and I miss it so much.
Lila is so happy, healing, and learning new things all the time, which lately only makes me sad again that her daddy will never have the chance to experience her as a well child. She is grieving too, and sometimes signs for her daddy and looks at me with this very confused lost expression. And so we look at pictures of daddy or I give her kisses "that daddy left for her" which makes her beam with happiness again, of course, and she flashes what her hospital nurse Marilyn use to call her "twenty-five thousand kilowatt smile". She's going to be TWO! And boy, she is ALL toddler. She has accomplished more in her first two years than I did in my last ten! Soooo much like her daddy, that one. She is showing signs that she wants to play with other kids, and I'm not really sure yet how to accomplish that. But I will figure something out because Lila will demand it sooner or later - of that I'm sure :)
I'm still drawing on for support the wonderful posts, texts/calls, story posts, and memories of the memorial service. I'm so grateful to have the support of not only my family and friends but Steve's friends and coworkers as well. It's been such a gift.
Thanks to all for your generosity during this time. I hope you take the time to forgive a grieveance today, or show someone who means the world to you that you care.
Posted on July 25, 2015
Posted on July 25, 2015Yesterday was Lila's one year NICU follow-up. It was so emotional...earlier this week, I received the early intervention evaluation for Lila. She is delayed for sure, but I was surprised how much. She has severe impairment in a few areas, like motor skills, which made me sad and discouraged. At the NICU follow-up, they all gushed at how WELL she was doing, and the neonatologist was crying and said Lila was a bonafide miracle. You could say that gave me the perspective I needed to have after that :)
I spoke with the doctor for a long time about all those nights so long ago. The heroic measures that were taken. Lila should not have survived all that she went through, let alone be so active, intelligent, and alert and happy. One by one, they all came in to tell me how when they have an especially tough case now, they think of Lila and how she survived everything she did - and is doing WELL by normal standards! Doing extremely well by preemie standards! She's on all of the growth charts in all areas for her adjusted age, and in some for her actual age...amazing. I think about all the nights we sat with her then, and how I was struck by her determination and sheer will to live as fully as she could. She was always good-natured about everything then, and she still is even as a feisty toddler. All of her doctor's and therapists think that this is a great spot for therapy intervention, and she will respond quickly to it. She had a few sessions already and I have noticed improvements in only a week. She definitely wants to learn and grow. Our feisty toddler - at HOME!
As I write this, Steve is in the hospital again - but hopefully coming home today. He has been getting so many drugs and treatments, his body is overloaded. He needed to get blood again and IV fluids, and they are giving him a drug to lower his calcium levels. The last time they gave him this was during his last hospital stay, and it worked wonders on his pain level - which is why I suggested it again. He is again doing immunotherapy (a different drug), and he's again having similar side effects. Only this time the effects happened faster, which worries me. He's so tired.
The oral drugs have been shrinking dozens of tumors, which is great, but there is also new growth...which obviously is not great. There is a large mass on his pancreas now. I fear it will be a race between the pancreas and the brain mets...Right now the brain mets are super small. But given his reaction to the immunotherapy drug which was suppose to treat his new tumor growth, I don't know if the new treatment is going to work at all. Last time it almost killed him. I don't know how he's able to function, but he is. Thank God we have this new doctor to keep a close eye on him. Let's keep this poor man out of the hospital!
I'm trying to keep it together, but it's really hard. Lila doesn't have a lot of nursing help, so most days I am trying to keep up with all of her medications, therapies, treatments, feeds, and several doctor's appointments all on my own. Lately, she has been requiring more around the clock care too, which means even less sleep for me :) She is having issues with her GI tract, and is currently on antibiotics which is helping. And her breathing has been affected by something brewing in her trach area, which she seems to be fighting off ok. But good ol' Lila is still smiling and happy and playing as much as possible! So if I don't respond to your email or text or seem distant - it's not you it's me!
I love all of my friends and family, and those of you who are our biggest supporters. We thank you from the bottom of our hearts.
Posted on April 27, 2015
Posted on April 27, 2015It has been another tough month for Steve. Shortly before his urgent back surgery in March, he was experiencing a lot of pain all over and seemed to slow down quite a bit. He was having trouble remembering things too. After trying to control the pain at home and some very frustrating conversations with all of his doctors, we decided to admit him into the hospital where he stayed for almost three weeks - the longest hospital stay to date. Finally, in the second week and after some sharp words to the docs from Steve's favorite advocate (me) and trying a litany of drugs his pain started to improve. We also needed to clean up and close the wound that wasn't properly healing from his back surgery. Unfortunately for Steve, this whole process took longer than we wanted because between the palliative, general, and surgical doctors (notice no oncologists were involved) could either not agree on what to treat first or did not communicate well enough where to start. We decided to have plastic surgery close his back wound and go from there. After that procedure, I insisted they take a brain MRI to assess those tumors. Sadly, the scan showed inflammation - which explained the confusion he had been experiencing for awhile - and also that there were 5 tumors that they could now clearly see. We were finally referred to a new Melanoma specialist who also is an expert in pain/palliative care, who explained that this latest scan means there are likely more tumors that can't be seen yet in the brain. We also decided to rescan the rest of him, and it was no surprise to find more large tumors under his skin and in more bones. There are a few visible lesions in his lungs and one in his liver, though those are small. She talked with the radiologist at Northwestern, and they recommended 10 treatments of whole brain radiation followed by drug therapy. The drugs are the oral kind he was taking before December of last year, and they are targeted for the type of mutation for his cancer. This is the only drug combo that has worked so far to shrink the tumors, and so we really hope it works again. We stopped it so that we could try an immuno drug infusion therapy before Christmas, which probably contributed to a lot of inflammation and pain all over. Her prognosis for Steve is grim. They soon put him on steroids to control the brain swelling, and they also helped control the intense pain he had been in. So for the time being, Steve is feeling much better and was discharged last week. He is half-way through the radiation treatments. There is one brain tumor they cannot radiate, as it is in the same field that was previously radiated last year. We hope that tumor behaves itself. Overall this is not encouraging news, but Steve has proved to be as resilent as his daughter. Though we left the Block Center, Steve is taking what he learned there and from other cancer survivors to heart. He continues his special diet and supplemental plan, which we hope will keep him from getting any other secondary infections or illnesses. He's well enough to visit Lila again, which is the best medicine!
Meanwhile, at Lila's hospital we have been very busy planning her discharge!! There's so much training and planning to be done that it is absolutely maddening at times - but worth it! For the past few months, I have been working with the wonderful nursing coordinator to socialize Lila - from having people taking her to play group, to having a flood of volunteers everyday. Lila's therapists have also been working hard with her, and she is sitting up unassisted at times. She's also acting like a typical toddler - throwing her toys from her high chair waiting for her adoring fans to pick them up. At this point, everyone knows Lila's smiling face and she loves all the attention.
From a heart and lung perspective, Lila has been ready to come home for months and has been incredibly stable. The real hold-ups have been the issues around feeding/eating that all stem from the infection she got (NEC) at one month old. A little over a week ago, they were finally able to turn off the TPN (the artificial nutrition given IV) after a year and a half! Her labs and electrolytes are a little, er, wobbly right now while she's adjusting to just getting food and supplements in her Gtube. They told us to expect a weight loss, but so far she's holding steady - that's our girl! They would like her to show them she can gain steadily before they release her to our care. The feeding with Lila is a very slow deliberate process because she is given breast milk, formula, salt, baking soda, and pectin which is precisely measured. And they have been slowing adding things and increasing the continuous feeds for the past 11 months. At some point soon they hope to reach the magic number in volume so they can start to back off the number of hours they feed her by tube. But again, we will likely continue this process at home in one to two weeks - yay!
And so while Steve was in the hospital, I have been trying to gather and do everything she needs for a proper homecoming. Yes, that includes a crib and a dresser and a glider, a changing table...also in her case that includes: confirming 24 hour nursing care, supplies, equipment, emergency training, flushing and maintaining a central line, feeding pump management, and so on and so forth. MY BABY IS COMING HOME!!! Eighteen long months, and she is finally on her way. I really hope we can do this.
I want to thank all of our wonderful friends and family who have been amazingly supportive through this whole process, especially the last three months. There is NO WAY we could do any of this without all of you pitching in. Some of you have given your time, your money, your advice...all of it is cherished. I am so grateful to be surrounded by so many smart, talented, and giving people. The times we have been drowning, there is always someone waiting with a life vest. Thanks.
I also want to add that there are some amazing people at Lurie's Children's hospital. In the NICU and in the TCU, many new friends have supported my efforts to advocate on my daughter's behalf and have shown incredible dedication and compassion and influence. I'm humbled by the courage and strength I have withnessed, and their support has kept me going when I wanted to give in or give up. Those people care deeply about those kids, and about the families. And the good ones will go out of their way to support a frustrated but dedicated mom who is just trying to do what's right for her family. Thanks.