Beginning skin breakdown

After

Warning: Graphic

I was admitted to O'Connor's treatment early am last Weds after a days of struggling. Admitted is strong. I'm giving it time. I was/am in rough shape. I still am. I knew if I didn't get to NY for treatment I may not survive. I was too weak. The swollen ankles are from lymphadenopathy or swollen lymphode. The swollen cancerous nodes in my thighs were found by doppler. My abdomen, which is distended beyond belief, has improved. The rest, well, it's there. These are the only sites of known disease.

The whole picture

Below the GW Bridge in the am, the bridge that crosses from the Bronx to Manhattan. As long as I remember, I always loved the silhouette of the skyline driving past as the sun rises or falls with it. It always seemed full of new possibilities, a whole new life, like entering a whole new world. Over the years the connotations and dreams have passed, grown, somehow changed, but the feelings have remained the same: the awestruck pattern of possibility ahead. It still exists. But I never thought I'd be a patient. Now, I am. I was admitted via ambulance after having a "near syncopal" episode (almost passing out) at my appt. With Dr. O tues. It was the clinic's first day with seeing patients. I made an impression for sure at the brand new lymphatic center on 60th and 5th. Gorgeous place but in the process of the moving, All records were being moved. It is Chinese New Year today. Canal st is having dragon dancers. I know x would love it. I had only come to nyc for a check up. I packed up three sets of hospital outfits. I had jewelry pieces, my hobbies. I kept obsessing over small hobbies to keep me busy. These are things I never do. Then I slept, a comatose sleep. I barely woke up to call NHPR regarding "obamacare," and what would happen if the ACA was federally overturned during my treatment, taking away the 2 million stipend for me to continue my care? The professional answer: they don't know.

Candi

10:30 chine uniRick santorum, mitt romney, newt gingrcish
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Smiling Still at 8:30!

After a very long day of more diagnostic testing, evaluating where my sites of cancerous dx are and how all my co-morbidities are affecting my healing I'm still smiling. My family is here: dad (since tues) now my mom, jon, and x. All safe, smiling and happy. College friends are caring for me! This is what I needed: a fresh pair of eyes from professionals who had no idea what I'd suffered through. All updates will be here now to conserve energy. Showing up with no piece of my 1000+ page chart made catching up difficult, but everything happens for a reason. I'm exactly where I'm supposed to be. Those prayers, novenas, thoughts absolutely helped. It couldn't have come at a better time. Now, I have to publish the prayer. Anybody who knows St,judes novena, send it to my comments section.

The George Washington Bridge as a patient!

It's hard to believe The GW was a starting point, a landmark in life. Senior year in community nursing our these assignment at The College of New Rochelle was to identify needs based upon socio-economic area. "Morningside height," which has columbia-pres on its south boundary and Harlem hospital by St.Nick's Park to the North. There is no other place in America like it where disproprortionate care based upon insurance, income, race, etc is so prevalent. Survival rates vary from low-mid 30s at Harlem to 80s at columbia. It's amazing, but I'm at columbia, ready to nap.

View from colum-pres. Hospital room

I will only be updating my blog due my severe illness. Nothing personal. My room only has me in it for the moment. Here is the view. Mom (nancy) is coming today. She is staying with J and X at the Marriot in New rochelle, 5 to 10 miles from here. I went to college in New Rochelle. We have vacationed here in happy times. I hope my freinds with kids X's age and good memories will help the anxiety. Vic (dAd who drove me down for my appt. Mon. With super brave explorer Denis B.) Has been at vigil, staying at a HoJo's near yankee stadium (the scary hood) to be close via cab. The fam is all moving to The marriot suite in westchester, which is easy and convenient with one bed (king?), A pull out bed, kitchenette. We use marriot points, a discount code, but $$ is daunting. The marriot was where j and I would stay when we were courting. There are restuarants galore, glow bowling, an arcade, Whatever gives the fam piece of mind. Hopefully, my health will give that piece. Fr. Stan is saying a special bereaverary mass for me today. Pray for my health, my strength and survival so I may continue to recover and do the important work, exposing health care flaws, offering cost-effective options to improve it by looking outside the box. The good days are coming. My family and I just need a lot of love and support now. You can contact me here via comments. I love you all for the support. I'm being carried by your strength and that's a boundless blessing.

Lower extremity swelling

This started last Fri, I think, from having my right kidney stent replaced due to its failure from dehydration. My extreme diarrhea/restrictions since early Dec had allowed it to get filled with "gunk," and my idneys were failing. There is some improvement from the 3+pitting edema on the right. Its very painful. Now on all updates will be on here or guided through facebook. I'm too sick for personal updates. I'm in the hulstein building at colum-pres in Man. On 168th st getting a complete work up. Novenas, prayers. Please send them. I need many

The truth

I realized today it's been a month since Christmas, 6 wks since the terrible odysseys began with... Who the hell knows? I sugar coated the extent of my issues. There were so many to list beyond the insidiously growing cancer. On Christmas, I had been running to the bathroom each 30 min. For a stool. I had been an in-patient. I was fighting, and it had been a MONTh! I was too weak to live for myself. Everytime I prayed, I could only ask for help for loved ones who I couldn't help. I couldn't focus on me just the love I'd leave. I knew I was dying. I felt helpless, but I couldn't get what I needed: someone to look at me holistically, not as a bowel, GVHD, kidney. I knew my GVHD needed fixing first and along with it the extreme pain, with electrolyte imbalances leading to passing out, failure to thrive (I've lost 20 Lbs. Etcs). But Nobody was consulting to give me answers. No one was putting the pieces together. I was falling apart. All I wanted was to lie down and be told what to do to feel better, and I couldn't get a reliable phone call or opinion. I kept getting asked by attendings, specialists, my past geniuses what "I wanted to do?" For problems beyond me. I felt come hell, high water I needed to get to Dr.O. I'd die without treatment. I was passing out each time I moved bc each night I'd have diarrhea that would clean out my bowel and my nutrition. I couldn't get up from a sitting position due to thigh muscle wasting from steroids: couldn't climb stairs, step in or out of cars. People would follow me around to catch. My kidneys began to fail due to dehydration. The stent did fail and was replaced. My liver is failing. My heart is trying to follow. Long story short: we ran to NYC Tues through the icy-rain, scared, sliding. Me comatose. Dad with lifelong friend Denis B. For support drove for my first appt. With Dr. O at the new lymphatic center on 60th st. Dr. O's NP, Ellen, saw me first and nonchalantly asked about admission. I accepted. When I'm thrown a lifeline, I'm grabbing. While at the clinic the staff was organizing my bed and transfer via car/ambuelette service, no lights, or fanfare, I got bored. I stood up to grab my back pack, then everything went black. I passed out. Dad caught me and tried to lower me in a chair. I saw him through the fog. He was horrified, paralyzed. I realized he had never prepared or imagined this moment where I could die in his arms. That couldn't happen. I managed to scream help through gibberish, then dad yelled. When in doubt, call for help, especially in hospitals, clinics, the street near PD or FDNY. My doc called "911" as I lay flaccid and a real ambulance, which we begged, but didn't have to since the medics were great, to drive past good "911" hospitals to Colum-PRes where dr. O's team had a plan. So instead of the horse ride through the zoo at central park I've been dreaming of, which X would love, I got an ambulance ride, my first as a patient. I have been admitted to columbia-presbytarian hospital in NYC on 168th due to my illness. Mon. x thought I had an appt tues. and would be home. He now knows I'm sick in NYC but I don't know what else. He's prob going to have a bad week until we decide what to do with the fam, likely stay in school until Fri. At least. I have multiorgan failure, but will hopefully recover. Please inform anybody who can help and give my family extra TLC. Denis B, down for anything for as long I can remember, waited patiently, supporting Dad. He chased the ambulance over 100 blocks north from Manhattan to Harlem trying to decide where to sleep or stay safely. Denis took the car and drove home, leaving vic and I here. Dad slept in the rm with me first. We got to the rm at 3am after being in a NY ER, which he'd never experienced. He slept in the lounge staying vigil. But after one day of serious care where I saw specialist after specialist that made recommendations, that Dr. O had called in from CA, giving my immed. Family his cell phone number! I was treated by the doctor/pulitzer prize winning author of "Emperor of all Maladies: a history and treatment of Cancer.". Whatever they're doing, I think it's working. I could eat a little. I stand without passing out. I'm not crying in pain, but I'll have a game plan. That's the update. There's too much, and yet, to say except thanks for everybody's commitment to praying and boosting our family. Much love, Hillary
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Bitter or better

This was the quote a super mom left off with from the NBC nightly news. Her son is undergoing standard treatment for refractory lymphoma, aka a stem cell transplant. Her daughter, who had to accept traditional care for a separate cancer has recovered, but they are in financial distress now labeled insuranceless, as a self pay, which believe it or not is more expensive than having insurance. No group protection. Mom is trying to raffle off her sick 3 year old's paintings on facebook for cash. Sound familiar? And I'm the one finally feeling bitter. I'm entitled. It's been a long fight, and still, mom's have to raffle their kid's energy for treatment. Even "dying" I must have a job for piece of mind. Also on the news were state plans for universal health care and exchanges. It said NH has not done anything, but VT has created a single payer system. Don't believe everything you hear. I know NH has a catastrophic illness exchange created. I know they have innovative ideas to make care delivery safer. Its one of the things I'm proudest of, and of course, it's being threatened. I need to write that piece but I've been distracted with duties. I think its time to do some hard core complaining first. I'm feeling bitter, not better. Who knew a stomach virus could cause adrenal insufficiency when I felt my best? Who knew I'd re-ocur, the insurance would deny the awful chemo to make me better at $10000 a daily pill? Who knew my graft vs host would flare up in early dec., IN THE BOWEL rendering me useless, sleeping constantly, unable to eat or drink? Who knew itd be the first time I really suspected I could die, that itd be so painful I'd beg for relief, and worse, after over half a decade of fighting, I wouldn't be able to get ahold of my primary NP or doc for guidance? To top it off, who knew I'd consult my expert teams only to have home team blow it off for the easy answer. I've fought off worse. I won't let this be my downfall. But I've become so weak. I can only eat a few very healthy things or surrender myself to wrenching in the bathroom.
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Whoa, cankle

Whoa, check out the +2 pitting edema, or major swelling that sticks in place when I push it, on my right ankle, only my right. Swelling can signify heart failure but my left side is fine. I haven't peed out all the fluids from my stent replacement Friday. I have no other symptoms other than my kidney still hurts, I can't pee much and I have to do it often. I'm relieved to see Dr. O tomorrow bc I don't know where to fix myself from here. When I don't know where to go, just call tenacious Dr. O!

Contagious Joy: Spread the wealth

It's a truth I thought I could change: unless you've walked in a person's shoes, carried their cross or lived over and over their trials, you just can't understand what their journey is about. Nobody can. You can't substitute your life experience for another's. People need to learn for themselves. Maybe, that's part of life. Studies show we have very poor insight into our own behavior. We have even less insight into what motivates our own, though I can take a guess: my motivation is a healthy, happy life dedicated to serving and informing others. How do you think I'm doing? Transparency has been key but has it been enough? Has it been too much? Am i just sharing and not caring? I have found an overall philosophy for my time here and that is to leave all those I've encountered better somehow, happier/smarter/more enlightened than when we met. If I stand alone before my maker and am asked, "did I bring joy, ease or happiness to the lives of each person I encountered?" And the answer is yes, then maybe, I can count my life a success.
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Treatmennt/ Physical Update

Ugh, housing is just something new to research again. With med travel anywhere, transportation and housing is the most daunting and stressful. How am I going to get there? Who is going to drive and what will we do when we get there? How much will gas cost? Can I afford it? Will they be able to care for me among so many? The options are limitless but limiting. First, I always find a point of making a hospital employee assist, sometimes in writing by email. This could be the nurse, a msw, a housing liasion or a volunteer you're lucky to have found. At least this person has an official title. Its them I ask about tried and true methods: are there hotel endowments? Is there an opening somewhere like Hope Lodge? Where do I park and how much is that? Do u think these options will be available when I'm on study? I always try to think ahead. I prepare for the worst and hope for the best. Meanwhile, I have the sounds of bank registers ching chinging in the background of my mind while reality sets in. Will I stay night to night in whatever is cheapest on hotwire like a hobo? Will I make an arrangement with a good college friend and take over the in-lawsuite that I'll furnish? Do I stay in manhattan or West Chester County? Either way, any decision, this is started when I don't even have a therapeutic schedule. I put God in charge and try not to cope with the stress. Stress is immunocompromising, who knew? I guess we'll see the travel involved then. I'll be in NYC the 24th. I'm lucky I have experience of living and choosing these places previously for fun. I can't say relocation. Traveling/moving during the worst feelings of your life makes it almost impossilbe. Whatever the problem is: My bowel is still inflamed. Packing, above and beyond the travel, you need a pharmacopious amount of meds. I'm on 60mg pred with 9 mg enterocort and taking immodium around the clock, which limits me to 1 or 2 watery stools, or none if I stick to a strict diet: no sugar or carbs. I'm getting hydration 3x weekly finally. At home, which should limit my passing out. Keep a list of your current medications wth you always. At the top have your primary and srcondary diagnosis and any health history to go with it. After that, have all your allergies in red large block print and pay. This small amount of organization. On top of this, Im having my right kidney stent replaced tomorrow. Urology, and I, feel its clogged or compromised. Being on treatment "hiatus" we scheduled. Revlomid comes in today soo. I'm cleared but do not plan to take it until speaking with Dr. O on Tues. I'm hoping to heal and go to trial if possible. My GVHD specialist said revlomid is known to make GVHD worse. Look forward to seeing you. If there's anything you need, let me know. Hill
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Choosing Happy: An Emotional return

Returning to health means also feeling and processing emotions after battling for your life and limb, which is no easy accomplishment. I chose a long time ago not to reminisce or relive the worst times. It's better this way. Processing would only bring me back to those moments of fear. It could cause flashbacks and a whole lot of emotional pain I'd prefer not to experience, again, ever. I need to live in right now. I need to live my best life. I try to skip to the best feelings: to the elation, to the Gratitude that makes me feel better. I want joy and laughter back, quickly. I want fun among the pain. Its easy to miss those feelings amidst the disease. Its probably even easier to fall prey to feelings of "why me" and see what other people take for granted. It's even harder to witness others whining and complaining about their losses. Forgetting the bad, moving on quickly, enjoying the moment is against our automatic reaction. It's a choice, a choice that brings love and strength where there could be anger and pain. But not everybody works this way or has to. I dare say few people actively try to skip the misery. Lots that do are dying and understand how trivial the small things are. We just don't have the time for petty. I want the best out of life now, it takes effort, but just ask and you will receive back. Put yourself out first. The common reaction to illness or stress is to get angry and allow the post traumatic feelings to take over. Life gets difficult, but studies show taking out your anger on others, lashing out at unsuspecting targets like your co-worker, barista or bf, only makes you feel worse. It spreads the mirth, the pain, and probably to where it is all ready. Adverse studies show that faking a little fun and happiness goes a long way. It's all about choice. I didn't choose to be ill, to spend my 20s touring hospitals, fighting to find a cure, but that's what I'm doing. I only get to choose so little. I can't change it, so I focus on what can change. If you can't do what you want then want and enjoy something else. It's all in the attitude, hospital trips can make loving memories, happiness and gratitude can be found among the dying, as long as that's how you choose to approach it, as long as that is your choice.
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We're all in this together

With the acute pain, suffering, and danger seemingly out of the way, I'm now open to feel emotions. And it's good. It really takes losing something to truly appreciate it. Fri. I'd accepted the order to increase my pred. Dose to 120mg despite feeling it would decrease my quality of life with the swelling, bloating, GERD, and hot flash side effects while probably decreasing my life span with further weakening my immune system, causing bone wasting and muscle wasting. With no other options, I felt lost. I kept hoping I could postpone and get better. I made a last ditch call to Dr. A who put the few stools I was having at night after testing food into perspective: it wasn't that bad. I could suck it up, take immodium or anything else to plug me up, and eat only "safe" foods. That's what I needed. That's what I chose. I'm taking some cramping and debilitating pain. My diet is nuts (literally), nutella, apples, oranges, juice drinks, chicken with tabouli, and deli turkey. Pudding works and shockingly, these skinny cow fudge bars. I'm hungry more than not but I can move! There was an unfortunate experiment with chicken and pesto. The pesto tasted so good with its cheeses.... Damn them. I took my immodium first. I'd given the food the 2hr time frame so it could stick me to the toilet if that would happen. Or so I thought. At 2:30 the cramps and gas hit sending me doubled over to the toilet, emptying my bowel. Meanwhile, x gets out of school at 2:45. I can't leave the toilet to get the phone at 2:35. Somehow I work a toilet hiatus and call J while running back to the other Jon, thanking God along the way that our house is in the middle of X's school and J's work, which are only 5 min. Apart themselves. I dragged J out of his meeting to bring x to me, and luckily, it was just an episode. The bad pain, the suffering, just comes in semi-controllable episodes now. I finally got IV hydration set up, which shouldn't have been a stress I needed to request, but I did. I was passing out. My BUN was 150. My creatanine 1.5. These kidney function tests insinuates severe dehydration with starting kidney failure. Now palliative care will come to my home three times weekly to keep those kidneys working. I saw my urologist, Dr. Pais, before Anna. My right kidney has been hurting more. I can barely pee. Even though my stent is metal, should be able to stay for a year, and possibly unbendable, mine may be clogged. Since I am technically on treatment hiatus and labs look good, the stent is getting replaced Fri. Yes, in two days. I have revlomid if I need to take chemo. I've been financially approved, but I don't want to. I am meeting with Dr. O on Jan. 24th (next Tues) to discuss signing me up for a trial, all of which had ended in Jan. And had not been available. There is so much going on. This bout of illness has effected x, especially, severely. X doesn't want me driving due to my passing out. He doesn't want me alone. He follows me around ready to catch. He's had anxiety attacks, but he is talking openly about his fears. He's afraid I'm going to die, And this time, we all shared in our fears, honestly, together. We're all in this together.
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Contagious Happiness: Life's little moments

I'd been excited since scheduling bridal shopping with Steph about the trip even though I knew people were apprehensive about "dragging me out of bed.". The automatic inclination is to let the sick rest, a common thought meant to look out for the best interest. When I was healthy, I wondered too why the terminally ill still had degrees, careers, even kids. Now, I get it. I understand that I'm fighting a battle and that battle isn't to just exist. It is to exist and participate, especially in life's big moments and even if it means some discomfort. So S scheduled her fitting at David's Bridal and I started getting giddy about the "traditional bride experience" I thought she'd love. I wanted it to be full of "this is your day," "you're the queen," and "all eyes on you.". Showing up at the store with S, Aunt L, my mom and I, s got a little culture shock as we flew open the doors, grabbed chairs so I didn't pass out, ran smack into faux victorian desks with consultants trying to organize gaggles of girls, 6 other groups of brides with wedding parties, and immediately got a lecture from a pushy sales woman on the presence of her drink around the dresses, her lack of a date for Sept, etc. It was my job to blow passed that crap to the good stuff: playing dress up and finding a gown. Luckily S got through the gauntlet in good spirits despite the estrogen shock, and we got hooked up with the corner room besides the shoe room for lots of handicapped space. Having the dress options come, picking a gorgeous pair of shoes to "just try the dresses on" then buying them bc they look like jimmy choos, taking pictures and awwing was great, but you never know when a major life moment is lurking around the corner. I felt it in the air before I saw it. I'd stepped away to take my medicine when I saw S out of the corner of my eye, prancing and glowing. My mom rushed to get me back to see. She'd found "the dress!" The perfect one that made her feel regal, like the queen of her castle, a dress she could have dreamed about her whole life, a dress that could start a lifetime. I didn't really believe in moments like that, you know, love at first sight.... With a dress, but it changed the entire atmosphere of the store. Suddenly, all the staff, consultants, managers, district manager, seamstress (and all hands were on deck for the hundreds of women) were lined up and fawning over S. They were at her feet tailoring, bustling and saying she was gorgeous. The other parties were all looking. Everyone knew it was perfect and paid homage. It was contagious happiness. We even got teary. S rang and bell and got a wish before saying, "I finally feel like a bride." The happiness was deeper than I'd felt it in a long time, maybe even different than before, and it was being shared mutually by what had turned out to be a perfect group for the day. How could I ever miss that? Living with plans for the future, shopping for weddings, picturing better days ahead of vacations, even when the next hour is not guaranteed, makes life, and the pain, worth living. I've never regretted participating in what I thought was important. I have regretted missing sports, school events, even parties, especially when I get an infection anyway. I have lived without looking towards the future, and it felt dismal. Its fun to plan for better days even if they may be dreams. Nobody will ever tell you to miss a major life event, but you have to make yourself present and available. Friends, remember, we still want to support you. We're still us. Your lives are important, more than you realize. If you find yourself thinking of omitting someone due to their debilitating illness, talk to them. You maybe surprised being together heals more than hurts.
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It takes a lot of loss to truly appreciate the "small" things in life, and realize how nothing is ever "small.". I thought I had gratitude for my needs and activities of everyday living, like eating, breathing, and moving pain free. I knew I was lucky before I got sick, but these were "small," inconsequential occurences that my body took care of naturally. Well, now my body doesn't eat and digest naturally, breathe easily, or survive without pain. The temporary relief I receive when the medications are correct are the best in my life. I feel like I'm in heaven, floating on air, But I rarely get there. The floating could be from the mind altering meds too. I don't care how the feeling of "almost normal" happens. Good news is, I think I'm rounding the bend. I'll be getting the elation of survival sometime. Just keep saying those prayers. Fri. Jan. 13 was the Feast of St. Hilary. A favorite day of mine, Fr. Stan had a special mass for me that day planned without the knowledge of my feast day. St. Hilary was a writer, exiled, he wrote to promote the church and has the first known published catholic text in the Americas, at least I think. Wouldn't want to lie about a saint, but how cool is that?
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Dress shopping with Steph

Evidence I'm alive and looking well with my cousin Steph, who's getting married! Going to David's checking out dresses!

I found the energy for a revival "hillary fit." I'm holding off on Prednisone. I feel ignored by my MD, not receiving his finest. These are bad times happening at Dartmouth. The secretary got sick :( The budget is affecting care but I'm not losing my life over it. I called Boston to Dr. Ted Alyea, who called me back after not seeing me in over a year while in the car on the way home from the airport! He said hold off on the pred. Take immodium around the clock. Try to plug up the one or two emptying stools and he'll try to consult again. At least I have some plan. My electrolytes are stable. I am dehydrated. I am still passing out. I know increasing the dose of prednisone would ultimately lower my quality of life, as well as lessen the length, and that's worth waiting for. I will get the best option.
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After all I've done, tried to do, advocated for so everybody could access care, I can't access the best opinion to save my life. I have one opinion on my bowel GVHD. I'm getting it.
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X quotables

X is growing, emotionally and physically, in leaps and bounds, but emotionally he shocks me. Weeks ago when I got a virus starting this spiral he demanded to know "Who gave me the virus?!" Was it taking care of him or was it Dad. Obviously, Dad gets the blame, but this has gone on too long. I'm in too much pain, sleeping too much too early, missing games. He knows something is different. So the tide turned, "You wouldn't have cancer if I wasn't here." X retorted yesterday, in passing of course, as he was changing out of hot tub clothes at nana's. That's always how he drops bombshells, quIck and unexpectedly. He gets it from me. "You were healthy, then I came and you got sick." He made his point. I could see the kid logic, I was diagnosed before he turned 3. All he remembers is sick me and the only thing that changed, in his mind, is him. "No way." I shot back, using the same easy, almost joking light hearted tone he was. "What are you talking about? You're why I'm here! You make me get out of bed and have fun. What would I be doing NOW if you weren't here?" I countered. This is all true. Failure to move, motivate and push yourself kills you. It is a trend I noticed before I got sick. Beyond this, X is the future I see and want to influence most. All these years I've been dreaming about what we'll do, and it's amazing to find there is always more! He's kept me alive. "You'd be with Dad." X said. "Dad is at work!" I screeched, "like everyone else. It's us bud.". With that he was dressed, done, convo over. That's what I get, but the change in him was quick. I crawled into bed, curled in ab pain, by 7:30, like every night, but I forgot my goods: water, juice, apple, meds, meds, meds. I dragged myself miserably out of bed and into the living room where both x and j scrambled to wait on me! X beat out J, walking me back to bed, refusing to hand my meds over until I was where I belonged. Then, he left..... Coming back with ice water and an apple (one of a handful of things I can eat)! My heart breaks that my family has to suffer this with me, but I'm so lucky. J has been amazing, taking over as a parent doing homework nightly, especially spelling and reading, meetings, coaching, even making play dates! Life is absolutely different than we envisioned, but it doesn't have to be awful. Staying up past a bed time, not always eating at the table, letting X play video games I wouldn't for longer than I want, maybe, is all part of life and compromising with a partner, not just being sick. Change is of necessity. We're more flexible. It's how I've stayed alive so far medically. We know our priorities, and hopefully, going with the flow, addressing whatever comes our way, is the best way to cope.
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X quotables

X is growing, emotionally and physically, in leaps and bounds, but emotionally he shocks me. Weeks ago when I got a virus starting this spiral he demanded to know "Who gave me the virus?!" Was it taking care of him or was it Dad. Obviously, Dad gets the blame, but this has gone on too long. I'm in too much pain, sleeping too much too early, missing games. He knows something is different. So the tide turned, "You wouldn't have cancer if I wasn't here." X retorted yesterday, in passing of course, as he was changing out of hot tub clothes at nana's. That's always how he drops bombshells, quIck and unexpectedly. He gets it from me. "You were healthy, then I came and you got sick." He made his point. I could see the kid logic, I was diagnosed before he turned 3. All he remembers is sick me and the only thing that changed, in his mind, is him. "No way." I shot back, using the same easy, almost joking light hearted tone he was. "What are you talking about? You're why I'm here! You make me get out of bed and have fun. What would I be doing NOW if you weren't here?" I countered. This is all true. Failure to move, motivate and push yourself kills you. It is a trend I noticed before I got sick. Beyond this, X is the future I see and want to influence most. All these years I've been dreaming about what we'll do, and it's amazing to find there is always more! He's kept me alive. "You'd be with Dad." X said. "Dad is at work!" I screeched, "like everyone else. It's us bud.". With that he was dressed, done, convo over. That's what I get, but the change in him was quick. I crawled into bed, curled in ab pain, by 7:30, like every night, but I forgot my goods: water, juice, apple, meds, meds, meds. I dragged myself miserably out of bed and into the living room where both x and j scrambled to wait on me! X beat out J, walking me back to bed, refusing to hand my meds over until I was where I belonged. Then, he left..... Coming back with ice water and an apple (one of a handful of things I can eat)! My heart breaks that my family has to suffer this with me, but I'm so lucky. J has been amazing, taking over as a parent doing homework nightly, especially spelling and reading, meetings, coaching, even making play dates! Life is absolutely different than we envisioned, but it doesn't have to be awful. Staying up past a bed time, not always eating at the table, letting X play video games I wouldn't for longer than I want, maybe, is all part of life and compromising with a partner, not just being sick. Change is of necessity. We're more flexible. It's how I've stayed alive so far medically. We know our priorities, and hopefully, going with the flow, addressing whatever comes our way, is the best way to cope.
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X quotables

X is growing, emotionally and physically, in leaps and bounds, but emotionally he shocks me. Weeks ago when I got a virus starting this spiral he demanded to know "Who gave me the virus?!" Was it taking care of him or was it Dad. Obviously, Dad gets the blame, but this has gone on too long. I'm in too much pain, sleeping too much too early, missing games. He knows something is different. So the tide turned, "You wouldn't have cancer if I wasn't here." X retorted yesterday, in passing of course, as he was changing out of hot tub clothes at nana's. That's always how he drops bombshells, quIck and unexpectedly. He gets it from me. "You were healthy, then I came and you got sick." He made his point. I could see the kid logic, I was diagnosed before he turned 3. All he remembers is sick me and the only thing that changed, in his mind, is him. "No way." I shot back, using the same easy, almost joking light hearted tone he was. "What are you talking about? You're why I'm here! You make me get out of bed and have fun. What would I be doing NOW if you weren't here?" I countered. This is all true. Failure to move, motivate and push yourself kills you. It is a trend I noticed before I got sick. Beyond this, X is the future I see and want to influence most. All these years I've been dreaming about what we'll do, and it's amazing to find there is always more! He's kept me alive. "You'd be with Dad." X said. "Dad is at work!" I screeched, "like everyone else. It's us bud.". With that he was dressed, done, convo over. That's what I get, but the change in him was quick. I crawled into bed, curled in ab pain, by 7:30, like every night, but I forgot my goods: water, juice, apple, meds, meds, meds. I dragged myself miserably out of bed and into the living room where both x and j scrambled to wait on me! X beat out J, walking me back to bed, refusing to hand my meds over until I was where I belonged. Then, he left..... Coming back with ice water and an apple (one of a handful of things I can eat)! My heart breaks that my family has to suffer this with me, but I'm so lucky. J has been amazing, taking over as a parent doing homework nightly, especially spelling and reading, meetings, coaching, even making play dates! Life is absolutely different than we envisioned, but it doesn't have to be awful. Staying up past a bed time, not always eating at the table, letting X play video games I wouldn't for longer than I want, maybe, is all part of life and compromising with a partner, not just being sick. Change is of necessity. We're more flexible. It's how I've stayed alive so far medically. We know our priorities, and hopefully, going with the flow, addressing whatever comes our way, is the best way to cope.
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Getting healthy again

Getting healthy again after a life threatening illness brings relief, joy and elation like no other event in life brings. Everything is easier and sweeter. Breathing, walking, talking feels airy and freeing. I haven't made it there yet. I'm still tired and having abdominal side effects. I am eating. Good things. I'm thinking. I have energy. I just don't have the extreme prednisone side effects I should have. I'm scared of going on 120 mg of pred. Even though Dr. Alyea (melissa of course) has promised me they're looking into all other possibilities. Dr. A just needs to be updated by Dr. G regarding the last 1.5 years to make his decision more effective. I'm supposed to have an idea of a possible treatment, at least an appointment, by tomorrow. If not, by Friday, I may give up and resort to the prednisone. I'm fortunate a friend of mine has offered quarantine space in her home in E. Hampton. I could be a posh New Yorker while sick.
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Dad-date

I usually get a copy of my dad's update but this one didn't come my way. Hmmm, maybe it had something to do with his tone. What Dad doesn't know is I love reading his perspective (even if he over exaggerates). This "healthy Hillary" list could have been a government trial in information dissemination. What started out as an update to friends and family in 2006 took on a life of its own with more and more people asking to get on the list in the past 6 years, then those people forwarding it to others who have followed my battle, then maybe so on and so forth. I have no idea who we've touched and if or how this has helped, but I know it's blessed me with a blanket of support and love that I know I always have with me. It's a huge part of why I keep fighting. I'm so blessed. Hi to all. Happy New year to all.. My last update was almost a month ago now and I apologize for taking so long. The holidays are always hectic and this year was even more so. So the good news first. 2011 was probably Hillary's best year as far as being sick from her Cancer in the last 5 years. She only spent a couple of stays in the hospital. The miracle of 34th street was only a dream. The cancer has come back and she is now off of that trial drug. I believe this is the 14th time that the Hodgkin disease has mutated and returned. She is trying to get on a different drug until a new trial drug study is started in February. Dr O has moved from NYU to Columbia University as of Jan 2. So she will need to be the miracle of 151st st in NY. Over the holiday she went more than 3 weeks without being able to hold down any food. I don't know how she did it! As you know when she gets sick I get very nervous, don't sleep well. But this time I thought I should just eat what Hillary could not. Yes I pigged out with lots of good food. I wake up in the middle of the night and instead of writing all of you and update I ate Cookies!! Hillary told me tonight that the steroids she is on do not make her grow like Barry Bonds. Those are a different type. She has an appointment tomorrow because she has actually lost 3" in height! They have not checked her Bone density in 2 years. Tomorrow is that painful day. If it keeps going Xander at 8 years old will be taller than his mother! There is only 4" difference now!  Last week all the new medications started to work and she would get cravings and we would go out to where ever to eat. Her energy has come back a little. Her spirit is still strong but her physical being is weak. So as we all start a new Year -- 2012 lets hope we can all get and stay healthy. Enjoy the year ahead and make all your dreams come true. The world is not perfect but worrying does not make it better. Live life to the fullest and enjoy what you have. I just enjoy all my friends as they all care about Hillary. Lots of love Vic Nancy, Patrick and Grace, Preston, Pierce, Allen, Heather, Jon, Xander, and especially Hillary.-

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Step by step

Today, Mon, X is in school. I'm determined to get myself on a healthy schedule. At 6:30 I wake up to ease the pain and nausea and get the adrenaline I need with meds. They'll kick in at 7 a, when x wakes. Then I've scheduled to take more: my pred, entorcort, etc. I try to take by priority but they're all important. I get some juice and an apple to eat. By 8 am or so maybe I'll have stomached them while getting x off to school. It was $500 for a remote car starter so I think I'm going to train X to turn on the car and heat. He's been scrapping it since he was 6. I've made Dr. Calls. I spoke with both Alyea's and O'Connor's office. Alyea will control my GVHD. Now it's Tues. And I haven't heard back from Mel and Alyea. Marc and anna are talking about putting me on 120 mg of pred. If the 60mg of pred, 30 mg of enterocort, and 1 mg of flurinef doesn't work by Fri. I'll take it too, again, as a life and death decision with hopes of a reasonable taper before the symptoms drive me, or my fam, crazy. My aunt b has come to the rescue with our bills. Aunt P has rescued me, taking me to appts, making them fun, and making sure I eat the best. She's extra mothering me, and I wish she could feel how wonderful it is. I was grieving today about the future plans I had that will now probably never come to fruition. I mourned the worse over the side story: not be able to open my house like an orphanage or to be able to care for all the people in their need that helped me grow and evolve to be who I am. Life really is about the journey. It's a marathon not a sprint. The plan was in motion by 21. The family, cape in place. My career coming along quickly to supplement this utopia I had created in my mind in part with my dad where we could develop a sustainable community where people could gather and fish, stay safely with assistance into old age or raise a well rounded family in nature among other great neighbors. Before cancer, the plan was all about logstics, money. How we were going to do it. Now I just wish we could. I had the right idea. Good intentions. I don't understand why me when so many people have no intentions or bad intentions, but its hard enough to consider "what could have been." I definately stay far away from the "why mes?" I'll focus on awesome aunt P, J, X everybody that lifts me up. You're my miracle.
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DHMC Receives ACO Award (finish, needs picture)

In a letter dated Tuesday, December 20, 2011 from Dartmouth Pres. Jim Weinstein to the Dartmouth-Hitchcock community, DH is one of 32 sites in the country picked by the Centers for Medicare and Medicaid Services (CMS) to participate in the Pioneer Accountable Care Organization (ACO) project. Receiving the ACO is significant, because these awards were only given to organizations with the experience and readiness to effectively implement innovative new models according to CMS.
 
The awards were announced Dec. 19th by the Secretary of Health and Human Services, Kathleen Sebelius, in Washington, DC. Drs. Barbara Walters and John Butterly were in attendance to represent DH.
 
The Pioneer ACO model aims to improve care and lower costs by bringing together physicians, hospitals, and other health care providers to coordinate care for individual patients. The project expands on the very successful Physician Group Practice demonstration project that was implemented in community group practices previously.  
Through the Pioneer ACO Model, Dartmouth-Hitchcock will work with CMS to provide Medicare beneficiaries with higher quality care, while reducing growth in Medicare expenditures through enhanced care coordination.
"Providing the highest quality health care for the patients of our region, while driving cost out of the system, is critical to our goal of creating a sustainable health system" said Dartmouth-Hitchcock CEO and President James N. Weinstein, DO, MS. "The Pioneer project will allow us to continue and expand on the work we have already been doing in developing and implementing new care and payment models. We are delighted to be one of the organizations selected by CMS to participate in the Pioneer ACO Model."
Dartmouth-Hitchcock was chosen specifically by the Innovation Center to test the effectiveness of several models of payment in helping organizations make a rapid transition to higher quality care at a lower cost to Medicare.
"These Pioneer ACOs represent our nation's leaders in health systems innovation, providing highly coordinated care for patients at lower costs," said Tavenner, a Representative of CMS. "Dartmouth-Hitchcock has demonstrated significant experience in providing high quality, coordinated care, and we are excited to partner with them," Tavenner said.
Under the Pioneer ACO Model, CMS will provide incentives for participating health care providers who form an organization to coordinate care for patients. Providers who band together through this model will be required to meet quality standards based upon, among other measures, patient outcomes and care coordination among the provider team.
CMS will use robust quality measures and other criteria to reward ACOs for providing beneficiaries with a positive patient experience and better health outcomes, while also rewarding Dartmouth-Hitchcock for reducing growth in Medicare expenditures for the same patient population.
Unlike a managed care plan, Medicare beneficiaries will not be locked into a restricted panel of providers. The Pioneer ACO Model is not a health plan or managed care plan. Under the Pioneer ACO Model, beneficiaries seeing doctors participating in an ACO will maintain the ability to see any doctor or healthcare provider, as well as the full benefits associated with traditional Medicare.
  Congratulations and thanks to the many people who worked on the application for this award. Dartmouth-Hitchcock can indeed lead the nation in providing new, effective models of care delivery as part of a sustainable health system, and through their acceptance and participation in The ACO are taking strives towards more efficient, cost effective care for patients.
 For more information about the Pioneer ACO Model, visit the Pioneer ACO website at
http://www.innovations.cms.gov/areas-of-focus/seamless-and-coordinated-care-models/pioneer-aco/ or
http://www.innovations.cms.gov/areas-of-focus/seamless-and-coordinated-care-models/pioneer-aco/
The Pioneer ACO Model is one of several initiatives underway at CMS designed to encourage the formation of ACOs. For more information, visit
http://www.cms.gov/acoFor more information about the Innovation Center, visit
http://innovations.cms.gov 

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The good news is....

It's past midnight, and I can't sleep. I have insomnia! That's one of the very first signs of prednisone side effects. What else am I doing? I'm eating! I couldn't sleep bc I was thinking about eating! I woke up and cooked myself some adobe chicken on the foreman. I think I can handle protein. I've narrowed down foods I can eat: apples, tangerines, or fruits and veggies, deli turkey slices, and nuts. Still, this is a good sign. I was able to organize my meds today so I can function efficiently. I also called the doc team: Dr. O now at columbia pres. With his nurse Ellen and Dr. Alyea with his NP Melissa at Dana Farber in Boston. Alyea will manage my GVHD, somehow, maybe by finding me a genius specialist. O'Connor is the treatment guy, except the revlomid which is the chemo I may take until feb may make gvhd worse. I can't even take therapy until I heal and gain strength. I think I'm headed straight to trial at columbia in Feb. It's only two weeks away. Its two weeks to stabilize myself. Funny thing is, when I feel the worst, I'm always told I look so great. I get the comment from my specialists, "Wow, you look great for what you've been through, so much different than I pictured you.". I wonder, how did they picture me? Blue in a box seems to be the consensus so I guess somewhere barely above there. Thank you for the comments. Your support is my inspiration. Any questions, ask. I'm here to serve and honestly answer.
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The good news is....

It's past midnight, and I can't sleep. I have insomnia! That's one of the very first signs of prednisone side effects. What else am I doing? I'm eating! I couldn't sleep bc I was thinking about eating! I woke up and cooked myself some adobe chicken on the foreman. I think I can handle protein. I've narrowed down foods I can eat: apples, tangerines, or fruits and veggies, deli turkey slices, and nuts. Still, this is a good sign. I was able to organize my meds today so I can function efficiently. I also called the doc team: Dr. O now at columbia pres. With his nurse Ellen and Dr. Alyea with his NP Melissa at Dana Farber in Boston. Alyea will manage my GVHD, somehow, maybe by finding me a genius specialist. O'Connor is the treatment guy, except the revlomid which is the chemo I may take until feb may make gvhd worse. I can't even take therapy until I heal and gain strength. I think I'm headed straight to trial at columbia in Feb. It's only two weeks away. Its two weeks to stabilize myself. Funny thing is, when I feel the worst, I'm always told I look so great. I get the comment from my specialists, "Wow, you look great for what you've been through, so much different than I pictured you.". I wonder, how did they picture me? Blue in a box seems to be the consensus so I guess somewhere barely above there. Thank you for the comments. Your support is my inspiration. Any questions, ask. I'm here to serve and honestly answer.
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Falling

I did it. The first time ever, really. I fell. I stood up quickly from the couch. I made it to the island. I hollered for help but all I heard was j holler back. I didn't sense help was coming, though obviously it was, so instead of sitting myself safely on the floor and lying down, which would have been an admission of my body being in control, I somehow, don't remember, got my coconut h20 to take my meds before flinging myself into my bedroom where everything is soft and safe. But its not. I passed out. Hit my shin on the bedframe. Now I'm in bed. Maybe I need to be admitted to get over this hurdle. I haven't gotten any supportive care like fluids. I'm taking supplements, but its all pills. I need to get my strength before considering chemo. Tomorrow I'm calling my local doc, maybe dr A about my GVHD. I should have a specialist. That's how I've conquered gvhd so far, mb that needs to happen again.
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Falling

I did it. The first time ever, really. I fell. I stood up quickly from the couch. I made it to the island. I hollered for help but all I heard was j holler back. I didn't sense help was coming, though obviously it was, so instead of sitting myself safely on the floor and lying down, which would have been an admission of my body being in control, I somehow, don't remember, got my coconut h20 to take my meds before flinging myself into my bedroom where everything is soft and safe. But its not. I passed out. Hit my shin on the bedframe. Now I'm in bed. Maybe I need to be admitted to get over this hurdle. I haven't gotten any supportive care like fluids. I'm taking supplements, but its all pills. I need to get my strength before considering chemo. Tomorrow I'm calling my local doc, maybe dr A about my GVHD. I should have a specialist. That's how I've conquered gvhd so far, mb that needs to happen again.
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A Day for Novenas

It's time to pray novenas: prayers special to StJude and Mary that are used in desperate situations, to heal me. I keep thinking about them, praying, then I fall asleep from the weakness, fatigue and exhaustion caused by malnutrition and cancer. I feel like I'm dying. It's painful. Each am I try to take the right cocktail of meds at the right time so I can function for more than an hour. Yesterday I finally went a day without diarrhea. I ate carefully: tangerines, an apple and added another steroid. If this doesn't work by the end of the week I need a GI Specialist for GVHD or else I won't survive the combination of attacks: viruses, addison's, GVHD, kidney issues, cancer and malnutrition. I'm all ready so weak. I put myself in God's hands again. Please remember to pray the novenas for my miracle. This is what it is: Traditionally, the novena prayer is said for 9 days.  The 9 days signifies the 9 days the early Apostles prayed together during the time between the Ascension of Jesus, and Pentecost, when they experienced the powerful presence of the Holy Spirit. 

What prayers should I say? How do I say them?
 Your prayer can be as simple as "St. Jude, please help me with (insert your request)", You should then follow your St. Jude prayer by saying 3 Our Father, 3 Hail Mary, and 3 Gloria prayers.   Meditating and/or some type of fasting during the 9 days provides extra comfort and strength when saying the prayers. Here is one special for the sick. What's most important is you think of me, believe and have faith that I will return to health: St. Jude, you witnessed the healing power of our Lord Jesus. You saw his compassion for the sick and dying. You yourself touched the sick, shared the sorrows of the mournful, and encouraged the despairing. You received this authority and healing power to work wonders, to cure the incurable, to make people whole. We ask you to intercede with our brother, Jesus, to send his saving grace to heal the sickness and suffering of _________________________________, to uplift his/her despondent spirits, and to instill hope in his/her hearts. Amen.". Thank you for your faith and support.
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GVHD OF The Bowel

This has been the first time, in a long time, that I've sat at my computer to write anything.
I haven't had the strength to think and sit simultaneously. I always wondered who those commercials were taking about when they advised you can't take a medication if you "can't sit or stand for longer than 30 min."
"Who are those people and where do they exists?" I wondered.
Now I know.
The 60 mg prednisone has not stopped the attack on my guy. All foods flow freely through the GI tract.
The heme team put their heads together to prescribe another steroid that works directly o the bowel.
If this fails, there is the option of doubling my dose to an unheard of 120mg.
I wish I would have known tinkering and not starting at the exact recommended dose of 1mg/kg could have that consequence, but I didn't.
I wish I had a GVHD specialist guiding over this. I've managed to find specialists for my lungs and eyes that has given me major comfort. I'm going to check out Boston for this.
I do feel like I'm fading away, too sick and sleepy to do much. I hope I don't, but it's been a long time since fighting has been so difficult.
 I'm awake about 4 hours daily, but it's worth it. I try to keep my routine with X, hang out with friends.
I think about the Basketball tourney's coming up. I'm so lucky that I know I can go anywhere I choose to get treated and my family will make it happen.
Hopefully it will make it happen soon enough.
My electrolytes, despite the diarrhea, are stable. Aside from feeling AWFUL, I'm looking okay.
Thank you again for all your support through the season. I wouldn't have made it through without you. Also, see those pretty lunch totes to the right? My friend Darcy is selling them on my behalf. We know a new trial in NYC is starting in Feb., and we're all ready trying to prepare for the expenses. I still have fight, and I'm so lucky for the faith and support of everybody. Thanks. Please pray this new medicine works so I can eat.
Hillary

Update

Time for an update: I'm still flat on my ass. I haven't been able to sit at a chair yet. I'm weak but gaining strength! I can now eat. Digestion is slowed, but I still lose most through loose stools hours afterwards. I think I'm getting nutrients. Drinking lots. I'm eating healthy and cautiously: fruit, veggies, nuts. Carbs and sugars don't treat me well, but I feel like I'm on the upswing. I've been out at appt. Tues. And weds. Tues. I saw Dr. G which assured me that my cancer is slow growing and I need to heal before starting the revlomid which will drop my counts. I've filled out all sorts of financial aid too for the $1000+ a pop medicine. Weds. I saw endorcine who I love. These are the people who will get me off prednisone!! I got to 7.5 mg and stopped, thinking no adrenals means steroids forever. Not so. Today is the first day of full rest, though when J comes home I just fall asleep. Today J has a colonoscopy and he'll still coach Lex and the 5th and 6th graders tonight. When it rains it pours. X has had his kidney infection but went to school yesterday. Tomorrow he has an ultrasound of his kidneys. Hopefully these infx are a fluke. I'm seeing urology sometime around next Tues when I see anna next. I'm getting the stent removed and replaced because it's time. Chemo Revlomid may come in by the end of the week. Then I'll have weekly checks at DHMC for my blood counts until I can switch to a trial medication in NY in Feb. that has less side effects. The cancer growing slowly, thank goodness. This way I can regain my strength, heal my GVHD, Gut, and addison's, then go back to kicking cancer's ass. Thank you, everybody, for your love and support. When I become this ill, it's hard to see beyond my toes. I can't even run off adrenaline, bc my adrenals are fried. I get tunnel vision and try to focus on the task at hand, one step at a time, one moment at a time. People say take the struggles day by day, but take it as slow as you need, second by second, whatever it takes.
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Revlomid: here I come

Again, I did it. I fought off high dose long term steroids for too long, since Dec. 11, made myself miseralble and finally am taking the 60mg I need to eat and digest without everything flowing out. It's a fruitless battle. I hope it's not the only fruitless battle. I hope people have gained fonts of knowledge from my experience, if nothing else. But I think I'm coming round for more: revlomid here I come.
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2012: Kidney Infxs and Extra Mom TLC

Too often my body is taken over by conflicting ailments, one illness that is bad but when put with the other makes life 100x worse. Often it's nausea, vomiting and diarrhea together that leaves me heaving into the garbage while I sit on the toilet praying that it will stop. Well, that hasn't. Instead, It got worse weeks ago with another combo. Now I have a phlegmy cough with spit that needs outing but I can't with my gvhd of the colon. The gvhd has made it impossible for me to eat anything without it passing directly through my body. Now anything like a BM is yellow like my mepron, apparently one of the only things my body is absorbing. How mean is it to make me hack and not allow me to control my bowels? It's like God is playing his own sick joke. Then, For kicks, X has a UTI, his second in a month. UTIs are rare in boys and infx 2 got him scheduled for an ultrasound to look for anatomical issues that would give him kidney infections. I'm wondering why we both have problems with kidney infections. I know mine comes from my lymphoma and the necessarily placed stent, but what's up with X? Sympathy sickness? And that pain is awful. I want him healthy and happy. So today, the first day of 2012, I spent in bed babying my baby. Wrapping him up, stroking his hair, rubbing his belly, catching his vomit and giving him medicine. I call it "extra mom tlc." Sick little ones, or sick anyones, don't heal by medicine alone. They heal and thrive by getting love, hugs, and sincere care that validates getting through the illness to grow healthily. That kind of care, the care that is given lovingly and selflessly, is the best care for all. I wish there were more people available and able to give it. I wish I were one of them.
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