Ditch the Attitude.

Staged running selfie to go along with tonight's running-life metaphor. I'm a week into training with a running coach, more on that later. Today's task was 1mi warm up/cool down with a 1mi time trial ("as fast as you can go!") in between-didn't want to do that on a treadmill. Babysitter, check! Freezing rain kept me off the roads, so I headed to our hockey rink's walking track (runners allowed). GPS wasn't working so pacing my warm up was interesting, too fast I'm sure, and I ultimately just shut off GPS and went old school with a stopwatch.

The track is wide enough for two, passing is okay, except there was one (very sweet) couple walking together so once every lap I had a pretty substantial interruption jogging in place behind them until I could scoot around them, usually an aisle in the bleachers. SARCASTIC BONUS: website says 7 laps=1 mile, posted sign says 7.75 (probably truly 7.75), so who really knows what went down today, huh? What I wanted was a clear start, a clear finish, and nothing in my way. Didn't think I needed a reminder, but I guess I did... that.is.not.how.the.world.works. All things considered, I truly believe I did the best I could, I explored a new running/walking space, had a full hour ALONE outside my own house, and I got off the treadmill! All things I wish I could do EVERY day, so I'm trying to ditch the attitude and feel good about today. Coach gave me more credit for my time than I was willing to give myself and I'll have plenty more opportunities to see what I'm made of.

Knowledge.

I've had some urges lately to spill my mind onto Instagram, which has led me to two conclusions.  One: I should be writing here more.  Two: I should spill my mind onto Instagram.  So, for the time being, I'm going to kill two birds with one stone.  I'll dump a little more there, and post the same message here.  I like to go back and read these sometimes and it's far easier to find and reflect here than on Instagram.  Though I sure do love them both.  Here are today's thoughts on my latest accidental science experiment

Word of the week: knowledge. It's my number one coping tool. With any stressful situation (deployments, parenting, dental school chaos, illness, anything), give me all the information that's out there and I can handle it. So, big shocker to no one, I've been doing a lot of reading about running and talking to people with far more experience, even following other random runners on Instagram. It's been so helpful and given me the confidence I need to push myself. But you know what information just can't be found? Information about my own body. The only way to get that is by trial and error and LISTENING to it. I've been doing everything right (shoes, strength, yoga/stretching, incredibly gradual increases, following a plan, etc.) and I still developed some shin pain in December. I'm still not convinced it was shin splints, but rather than be stubborn, I took two weeks off. When I started back, I did so very slowly. I added compression and ice to the mix, too. My runs felt great, and so did my shins afterwards. Until they didn't. I realized the only difference was skipping the ice. So, yesterday I ran again and made sure to ice afterwards. Voila - no pain. Hopefully it really is as simple as that. And if so, no amount of Googling or book reading could have told me that. Sometimes the knowledge we're seeking just isn't "out there," but we can still find it by listening. And yes, I'll still be doing everything "right" and listening in case it isn't that simple after all. PS: pretty sure the photo timer went off when I was actually walking so don't read into my form too much.

Causes: World Breastfeeding Week.

I haven't posted a Causes post in a while and hardly any of them are my own, but I have enough I can say on this topic I decided to write it myself.  This is real life breastfeeding, folks.  My experience, I would guess, falls somewhere middle of the road on the horror-to-piece of cake continuum of breastfeeding.  There are so many things that can come up and if people don't know about them or aren't determined to work through them (which is also fine), they can entirely derail breastfeeding.  My hope is that people will realize there are many benefits to breastfeeding, but it is a huge sacrifice, too.

I don't often post photos of nursing because 1) both my babies have been such fast nursers, I hardly have time to sit down and get out a camera or phone to snap a photo and 2) it's been such a normal part of life for us I haven't really thought to take many photos.  I think number 2 is kind of the point of World Breastfeeding Week, though.  People who breastfeed know there's nothing weird about it, but there are plenty of people out there who don't get it or have some pretty misguided information on it.  Plus there's the whole fallacy that "breastfeeding is awesome" is the equivalent of "formula sucks" which is so, so, so false.  To me, the goal of this week is to help the entire world see what breastfeeders have been seeing all along--that it's totally normal and not weird and just feeding your baby.  So, just like I don't really take photos of changing my kid's diaper, you're welcome, I don't take photos of nursing.  I've never had a huge emotional attachment to nursing, but it has been an important part of motherhood for me, and now I'm getting ahead of myself.

I have breastfed both of my babies because it's what my body was made to do.  It's free.  It can be easy (no measuring and mixing in the middle of the night).  I get to eat more calories and seems to be helpful in losing pregnancy weight.  It allows me to share my immune system with my babies and that really seems to help.  It's convenient (nothing to pack when we go places) and doesn't require doing extra dishes.  It reduces my risk for breast cancer.  It forces me to stop and rest for a few minutes which is actually quite hard to do with a new baby.  It reduces the risk of SIDS.  It reduces my risk of postpartum depression.  And eventually, sometimes off and on, it works for me and my baby so we keep doing it until it doesn't.  (Speaking of that, I love this post about extended breastfeeding)

But it's not all rainbows and butterflies; it is a huge sacrifice, too.  I'm so grateful to have a partner who sees that sacrifice, supports and encourages me, and even thanks me for it.  In order to breastfeed my babies, I have sacrificed sleep (only one who can feed the baby), alone time (same reason--or I could pump, but that's been difficult with the issues I have had with each kid, more below), my diet, fun stuff (again, concerts, date nights, girls nights, vacations, etc. all become difficult when pumping in advance and while you're away gets thrown into the mix), my own health and comfort (thrush, mastitis, meds you can/can't take), clothing choices (lots of my favorite shirts and dresses are not nursing friendly in the slightest), hoping your baby will actually take a bottle, oh and lactating changes your sex life.  Don't even get me started on moms who have to pump regularly, especially moms who exclusively pump.  HIGH-FIVE to you.  "Just pump and have someone give baby a bottle," PPPSSSHHHHHHHHHH.

It's also worth noting that both of my babies became very distracted nursers at a young age.  So, even though I'm perfectly comfortable nursing anytime, anywhere, I still have to go into a quiet room and close the door in my own house to nurse.  Away from home, it's a crap shoot.  If they don't eat well during the day, guess when they make up for it? zzzZZzz...ZzzzzzZZZzzz...coffee...

Nursing Myra on day one

With Myra, my breastfeeding journey was difficult from day one.  We really struggled with latch and she had jaundice.  So, besides the fact that every living thing needs to eat, she really needed to eat to get rid of the jaundice, but the jaundice made her so sleepy, she wouldn't wake up enough to eat.  In the hospital, I called for help every time we were "due" to try and feed her because hospitals like their little charts where you cross off every 2-3 hours when you attempt to feed your baby.  Anyway, we were getting no where.  It always felt pinchy.  They say it's not supposed to hurt and I believed it, but even if it was supposed to hurt a little (I'm convinced some initial nursing pain is normal, especially the first 30-60 seconds of latching with a newborn), I knew this wasn't right and I could hear that she wasn't swallowing anything.  One nurse told me maybe my nipples just need to toughen up and that one little voice of doubt that maybe I was being a wuss or exaggerating stuck with me and I just thought maybe this is what it's going to be like.  Wrong.  This is where misinformation and lack of support can get new moms into trouble.  I met with an actual lactation consultant the next morning and they came to help every time I nursed Myra.  By the 24 hour mark, we had to get her eating and had to signal my body to start making milk, so after every attempt of feeding her, I'd pump then we would syringe feed her the milk.  It went in a syringe with a tiny little tube and we would stick it in her mouth alongside our pinky and she would suck it out that way.  Then 2 hours later I would painfully try to nurse again, fail, pump, syringe feed, repeat.  24/7.  Trevor was in school and couldn't afford to miss class, so we were both extra exhausted.  We doctored an hour from home, so once we were discharged, I had to make the drive with my brand new baby for follow up lactation appointments every 2-3 days for three weeks.  Myra had to get her bilirubin (jaundice) levels checked via heel poke and we continued to work on latch and weigh her before and after feedings to see how much she was getting.  By three weeks old, she graduated lactation and was back to her birth weight.

During those first three weeks, every feeding involved the attempt/pump/syringe feed circus.  Myra was still so sleepy we would have to strip her naked, drip cold water on her, and make a bunch of noise to keep her awake long enough to eat.  As much of an accomplishment as that was (the bilirubin levels finally going down, weight finally going up, some APNO to repair my severely damaged nipples), we went right from that into something is wrong with my baby.  I can't even open that can of worms (click on the FPIES tab at the top of the page if you want the background info), but it took months to figure out that she couldn't handle dairy through my milk.  I had 300 ounces of pumped breastmilk in the freezer that got donated (to an incredibly sweet adoptive family) because it was useless to us once she became an entirely different baby without dairy.  Fast forward a few more months and repeat but with soy now.  Donated more breast milk and started my freezer supply over again.  I was struggling to maintain my own weight with my diet restrictions and Myra was still struggling, waking up 5+ times a night at 7 months old.  I refused to switch to formula until I knew it would actually help and I wouldn't know that until she was diagnosed with something.  If she couldn't have dairy or soy in my diet, she certainly couldn't have formula made from those things.  I'm happy Myra got the benefits of breastmilk for so long, and I truly don't feel guilty for "making her sick" with my milk, though that is reality.  Knowing what we knew and trusting the doctors we were seeing (and man, we saw quite a few), I have no hard feelings about it all.  I wish we could have figured it out sooner, but we didn't and I don't blame anyone for that.  I gave up a lot to do what I really believe was best for my child.  I couldn't get a break, or even sleep, because it was just too exhausting to pump--especially after purging my entire freezer stash of breast milk TWICE.

Nursing Myra at 8-9 months

I breastfed Myra until she was 10 months old, but I continued to pump around the clock for almost a month just in case the formula we were trying didn't help her.  Thankfully, I LOVE SCIENCE, it did.  I love breastfeeding and I love formula.

*****

The first time I nursed Niko.  Photo by Angie Knutson Photography.

With Niko, I was terrified of all of the above.  Today he's a week shy of 6 months old (*sniffle*) and we have had none.of.that.  Oh, but wait, it hasn't been a perfect journey either.  Everything started out great, for the most part.  He was sleepy at first, but no jaundice issues.  I know babies can take their sweet little time in those early hours, birth is exhausting-I get that.  So, I tried to nurse him sometime in the first hour I think, it wasn't awful but he just didn't really eat.  I tried again a couple hours later, same thing.  His pediatrician wasn't worried at all and neither was I.  When Niko was about 7 hours old, he had a couple of decent attempts at the breast, but still hadn't really eaten (you can tell by listening for swallowing).  The nurse I had at the time got a little excited, put some sugar water on my boob and set me up with a nipple shield.  It seriously happened so fast I was like "uh, ok, we're trying this now, ok."  Using a nipple shield is fine, but it doesn't stimulate milk production like nursing without one does, so I also had to pump after feeding him like I did with Myra.  This is to ensure a good milk supply right off the bat.  I really did not want to get sucked into that circus again.  This is where my experience with Myra and lactation consultants came in handy.  I knew he was still new enough that I didn't need to stress just yet.  I had been calling for help every time I wanted to try to feed him because I'm a huge advocate of take all the help you can get while you're in the hospital!  But, after that really bizarre experience, and knowing what Myra taught me, I decided to just give it a go myself in the peace and quiet of my little hospital room.  It took some work and position changing and fidgeting, but he seemed to be doing better each time and I didn't have the jaundice fear, so I just went with it.  I did meet with an actual lactation nurse the following day and she said he looked great.  So, as far as those early days go, everything was pretty darn great.  However, big however, at about the six week mark things started to go south.  I was expecting the opposite: a rough start, but by 4 weeks we'd be rockin and rollin.  I had severe pain, thought it was from an instance of bad latch that left me a little damaged, I would dread feeding Niko and cry while he nursed.  After a month of that (yeah, a MONTH of crying every time I fed my baby), I realized it was actually thrush (click the link if you're bored out of your mind and want to read more about that process) and it took me another month to get rid of it.

Nursing Niko at 5 months, a rare moment where he fell asleep nursing

I had a month of good, easy, pain free nursing then I got mastitis.  The week we were moving.  I swallowed raw garlic like you wouldn't believe (that actually is a great remedy), but I knew I wouldn't be able to rest like I should, so I got the antibiotics, too.  Mastitis can be really bad if you don't get it under control.  As expected, the antibiotics led to me getting thrush again.  This time, I was prepared.  I started with all my lotions and potions right away and it's been stubborn but never got even close to the amount of pain I dealt with the first time.  I think it's gone or basically gone now, but I'm still being extra cautious, using grapefruit seed extract, probiotics, and trying not to get too hot and sweaty on my chest (easier said than done).

Surprise, surprise!! That got much longer than I expected.  This started as a Facebook post with one picture from my iPod...oops.  But hey, there you have it-my real life experience with breastfeeding so far.  Like I said, I don't really feel like I have the same emotional connection to nursing as many moms do, but I am still damn proud of myself for all of this.  I'm doing what I believe to be best for my babies and that's all any of us is trying to do.  I truly believe breastfeeding isn't what is best for every baby.  When things like stress, exhaustion, health of both mom and baby, guilt, physiology, etc. are factored in, there is absolutely no one size fits all.  I was ready to switch Niko to formula in a New York minute if he showed signs of FPIES because Neocate changed our lives that much with Myra.  I was stubborn through the thrush nonsense because I knew as soon as it cleared up I would wish I had kept nursing.  It was a-w-f-u-l, but I am glad I hung in there.  Again, me being stubborn and passionate about breastfeeding is in no way a knock on formula.  I do want people who will be having children to be aware of these things, know that they are fairly common, know that there is support out there, and know that it can be done.  All that said, if anyone chooses not to or is unable to breastfeed, you are still an awesome parent and don't let anyone make you feel otherwise.

This is when I should proofread, but instead I will go take a shower.

Updated Food Trial Method.

It's been a while since Myra has had a reaction during a food trial, 10 months to be exact. When Niko was born, we chose some foods with a really high pass rate to trial so we could continue adding to her diet without setting ourselves up for failure with a newborn in the house. As we have tiptoed into some riskier foods and still been blessed to not have any reactions, we have also loosened up our trial method. I was fortunate to find another FPIES mom, Jamie V (click here for her website), who has done plenty of research and trial and error of her own and used her wisdom in figuring out which foods to trial. Now, I am using her same method for the trial itself. Originally, we could trial one new food every 14 days. With this method, we are able to trial two new foods every 20 days. The big caveat is that it only works if everything is going well. Thankfully, that has been the case for quite some time now.

Click here to see how we used to run trials.

The combination of not having a reaction for a long time, Myra having great communication skills so she can tell us if she isn't feeling well, and not having any unique circumstances lately like teething or illness is what makes us able to do a faster paced trial. As a reminder, the important aspects of a trial for us are to start slowly yet build to a full serving size, take a break, then come back to the food while starting slowly and building to a full serving size again. Many FPIES kiddos don't react to a food until they have a break from it, so that is an important part of our trial.  This is the new method that has been working well for us.

New food #1 for 5 days (working up to a full serving size by day 5)
New food #2 for 5 days (working up to a full serving size by day 5)
Back to new food #1 for 5 days (working up to a full serving size by day 5)
Back to new food #2 for 5 days (working up to a full serving size by day 5)

If all goes well by the end of the second five-day period, we consider that food a pass.  This allows us to take advantage of the break rather than just letting time pass.  If we see or even suspect a reaction, though, we can't introduce the second food during the break.  In that case, we would use the break to see if the symptom goes away or if it is unrelated (teeth, illness, seasonal allergies, etc.).  It is much easier now that Myra can tell us what is bothering her.  She was struggling with sleep for a while which was our first red flag, but now she is able to tell me that her "nose feels yucky and her eyes feel ouch" which was my indicator to get her Zyrtec refilled.

I wouldn't feel comfortable doing two risky foods in the same trial period, just to be safe.  For example, we wanted to do peanuts and wheat.  Peanuts aren't quite as risky for FPIES kids, but because it is a legume like soy, green beans, and peas (all fails for Myra) we were nervous.  Had one or the other gone bad, we wouldn't want to risk confusion between the two or derailing the whole trial, so we paired each with a less risky option.

Causes: National Marrow Awareness Month.

November is National Marrow Awareness Month.  I have personally seen the impact marrow donation can make for individuals and families alike.  This story belongs to Mary, the wonderful and strong mother of my good friend, Adam.  It seems that blood donation is common knowledge (which is great, it's important!), but marrow donation is not discussed or considered nearly as often.  I would say the impact one can make by donating bone marrow is difficult to put into words, but Mary proved me wrong.  After following Mary's story and now reading this post, she sums it up well when she says, "Cancer took things from me, but it also gave me things that I never could have expected." Thank you so much to Mary for sharing this journey.  I'm resisting the urge to go on and on in this intro and I will let Mary do the talking.

When Ali asked me to write something for her blog, my first thought was I can’t do this… but how could I say no? So, please bear with me and ignore any grammar issues :)

2011 was fast approaching; I was in the midst of changing jobs, busy with the holidays, and doing the juggle act between being a wife and mother. Life was crazy busy. January came and I was feeling run down. I found myself having to take breaks during my Zumba classes because I was so short of breath. I caught a cold, with a bad cough, head ache, and low grade fevers. After much nagging from my dear husband, Ross, I made an appointment at our family clinic. 

It was Friday, January 21^st, 4 pm appointment. I was seen by a resident, who after examining me thought it was most likely a sinus infection and gave me an antibiotic. He also asked me to have a blood sample drawn since I had been feeling run down. At 6 pm that evening I received a call from the resident. He explained that my blood sample showed some things that were a little worrisome, and they would like me to come in to the clinic the next morning to see a staff physician. The warning bells in my head went off. I have worked in the medical field since 1983, mostly in GI, but I knew enough to know that this was not good. I asked the physician, “what labs were they concerned about?” He told me my white count and platelets were very low. I remember saying "it’s not leukemia right, my white count would be high?” He reassured me it could be lots of things; they would need to do a little more testing to find out for sure what was going on. I remember hanging up the phone, and thinking I have CANCER. I found my darling husband, and told him about the call; he was in total shock as I told him I think I have cancer. I felt numb, I called my sister and told her, as I talked it was like I was talking about someone else. This really couldn't be happening to me. I am only 47, I have too much to do. I can’t have cancer. Saturday morning my husband and I sat and listened as another doctor told us that this looked like it could be a blood disorder, possibly cancer. He wanted us to have another blood draw on Monday morning and scheduled an appointment with oncology. Oncology…the cancer department. We were in total shock. I don’t even remember the ride home.

I come from a large family with 6 sisters, who are my go-to people, my rock. One phone call was all it took and within minutes the rest of family had been notified and the prayer chain and Google searches had begun. It was the longest weekend, waiting for Monday so we could get some answers. I didn’t cry, or break down even once. I had calmness about me, call it shock, or faith, but it got me though that awful waiting period. Ross was a wreck, hovering over me.  My symptoms were increasing fast. By Sunday evening Ross was calling the emergency nurse line because my fever had increased, I had uncontrollable shakes, and my heart rate was extremely high. They told him to continue to monitor me and to bring me to the ER if things progressed. We survived the night. Monday he dropped me off at work, I had my blood drawn. I went to work and started to clean up my work area, it was like I was in nesting mode, like when you are pregnant, and you start to organize everything to prepare for what is coming. I asked my new supervisor to meet with me. We sat in the cafeteria, and I told her I think I might have cancer. I might need to take some time off. I was in robot mode, checking things off the list, still not crying. By 10 am I was feeling awful, so Ross took me home and put me to bed. At 11 am my physician called and told me that I needed to be admitted to the hospital as soon as possible. The blood tests were back and it appeared to be Leukemia. More testing was needed. I was crashing fast, feeling extremely week, and nauseated, I could feel my pulse beating like a drum in my head. I vomited in the hospital lobby waiting room. The first person who saw me was a 1^st year medical resident; he was so calming, and caring. As he was getting ready to leave the room he stopped and smiled at me, and said “do not be afraid, God takes care of those who take care of his people”. I felt this peace wash over me.

The days that followed became a blur of blood test, IV’s, medication, and a bone marrow biopsy. I developed sores in my mouth and tongue, making it hard to eat or talk. The biopsy results confirmed what we feared, Acute Myeloid Leukemia, a very fast spreading blood cancer. They explained my options: chemo alone, giving me a 20-40 percent life expectancy of 5 years; Or chemotherapy, radiation, and a stem cell transplant upping my odds to 50 percent. I remember looking over at Ross and saying well I have always been average so 50 percent sounded pretty good to me.

My chemotherapy started the next day, which consisted of 24 hours a day for 7 days. My fevers soared to 105 degrees, I was hallucinating, and my body shook uncontrollably. They moved me to the intensive care unit, putting me on an ice bed to try to bring down the fevers. My family hovered in the waiting room, praying, feeling helpless. Ross was exhausted, staying with me 24/7.

The transplant doctors were so excited to hear I had 6 sisters who could possibly be a stem cell match. Siblings offer the best chance of survival, and less chance of side effects post-transplant. All of my lovely sisters stepped up to the plate and got tested. It took about 2 weeks to get all the results, we were devastated to find out not one of them was a match. There are 10 things they look for and we needed a 10 out of 10 match. Our transplant doctor, who I think of as my guardian angel, told us not to worry. He would find a match. They contacted the Be the Match Foundation and had them run their registry to see if anyone was a match. I started to lose my hair, so I asked the nurse to shave it off. This gave me a sense of control, when everything else in my life was turning upside down. I just needed to have a say in something.

Cancer is like a snake curling though your body, eating away at you. Chemotherapy is like the Marines coming in to destroy the cancer but killing all that is in its path: The good, the bad and the ugly. It leaves you weak, bald, nauseated, vomiting, anxious, and worst of all you never know what horror to expect next. Cancer took things from me, but it also gave me things that I never could have expected. It strengthened my faith in God. It pushed me to really evaluate my life. It encouraged me to talk to people in my life with whom I needed to make amends, and also with ones that I needed to ask forgiveness from. It reminded me to tell my family and friends how much I loved them. I started to read the bible, and began to build a relationship with my creator. It deepened my relationship with my husband, and children.

Throughout this nightmare I witnessed so many good things. People from all areas of my life began donating blood, platelets, and signing up to be bone marrow donors. It introduced me to so many others fighting the same disease as me; children, teens, men, and moms just like me. Each of them taught me so much about life, courage, and love. Most of all, this experience and the people that I encountered during it taught me about faith.

Fast forward a little while, and we were given the news we were waiting for. They found the PERFECT MATCH! A 24 year old girl from Germany was my match.  We were overcome with joy.

The cancer journey is a lot like the Wizard of Oz.  You’re traveling along the yellow brick road, admiring the beautiful scenery and BAM, out of nowhere you are hit with flying monkeys, a wicked witch, and a whole lot of questions. The good old doctor informed us that he had been worried about my high antibody count and had some additional tests done on my potential donor’s blood, and mine. We were eventually told that the transplant was canceled, because the donor’s and my antibodies would not do well together. The transplant would have most likely killed me.  We felt broken. What now? The search began again for another donor. Another round of chemotherapy began.

Imagine being on a crazy roller coaster ride. That best describes the ups and downs my journey. Each time we were given a little ray of hope, we celebrated. We were excited to think we were at the end of the ride, only to have it take a crazy turn that had us free falling into another nightmare. Cancer teaches you that you really don’t control of much in this life. Those things we treasure are just those…things. Like my pastor often says you don’t ever see a hearse pulling a U-hall behind them.

Late April we were once again blessed. Another donor had been found! This time it was a 20 year old female. A truly PERFECT match. Within a month the process had begun.  The transplant was scheduled for July 15^th; I would have more chemotherapy and 3 days of full body radiation prior to the transplant. This would once again kill off all my cells, and prepare me for the new stem cells. My donor would be given a growth hormone for a few days to increase her stem cell count. Once her counts were high enough they would draw the stem cells by running her blood through a machine which pulled the stem cells out, and then returned the remaining blood to her. The stem cells would be placed in an IV bag, then into a little red cooler and flown immediately to our hospital. I was feeling overwhelmed for the first time since this journey began. I worried about my donor. I kept thinking about what she had to go through.  Would I want my child to go through something like this? I worried for myself also. I was petrified of radiation. I am not really sure why, after going through chemotherapy, how bad could it be? But I was shaken; I asked everyone I knew to pray for me. Our doctor, the guardian angel, sat us down and gave us all the dirty details of the transplant. He explained that there was 25 percent rate of dying in the first 100 days. We would need to stay in a transplant house for this time period to be close to the hospital in case of an emergency. I would need 24 hour a day supervision. Ross had already been away from work since January, and his boss was putting pressure on him to come back to work.

The roller coaster of emotions was running high. My sisters rallied, and put together a list of caregivers which would allow Ross to work during the days and watch over me during the night. I felt so blessed to have such a loving group of family and friends.  At the same time I was fighting emotions of helplessness. I was always the caretaker, the server, but I had been demoted to being cared for. It was humbling.

The hospital stays, tests, medications, and not working was causing a great financial strain on my husband. Once again our friends and family rallied by putting together fundraisers to take some of the pressure off. This too was blessing, and very humbling. Over and over people stepped up to help us. Cancer has shown us there is so much good still in the world. People DO care.

We witnessed the true power of prayer. We didn't get every prayer answered with a yes, and many times we didn't understand why, but after time passed we saw that God had a better plan. This journey has taught me to trust in God’s promise that I don’t need to fear, because I will never be left alone. God will always go with me. He didn't promise life would be easy, but He did promise if I placed my faith in him He would provide me with all the strength and courage I would need to get through anything.

The evening before my first radiation treatment a peace washed over me, and I slept like a baby. Morning came; the escort wheeled me to the treatment area with my husband, son and youngest daughter in tow. As we waited, I felt so much peace.  It was as if my wheel chair was floating off the ground. I can do all things through Christ who strengthens me.

July 15^th, Transplant Day, had arrived. The skies opened, and rain poured down. The clouds were black as night, and streets began to flood. We waited, and worried the little red cooler would not be able to make the flight. My family and friends came, decorated my room with streamers and delivered a birthday cake. We waited. Around 5 pm the little red cooler arrived and the transplant began. With my husband, and 3 beautiful children present, the liquid gold was placed into me. My sisters, parents, and best friend took turns celebrating with us blowing birthday horns and singing Happy Birthday.

In June of 2012, I was blessed with the opportunity to meet my donor and her friends and family. We got a chance to thank her, and to show her what her selfless gift she had given to me and my loved ones. She had given us sweet, precious time.

I do not fear death. I believe this is earth is a stepping stone to something far greater than I can ever imagine. I am so grateful for this precious time. I have learned on this journey that in life there will always be troubles. Some are big, some are small. It is how we respond that will affect the outcomes. We each have a choice with how we react; I choose to be faithful, to live life to the fullest, and enjoy all that is given to me. I choose to make a difference on this earth with every second of time God blesses me with. I want to die with no regrets.

Here is the link to the Be The Match Foundation registry.  It only takes about 15 minutes to register. It consists of signing a consent, swabbing your mouth with a Q-tip (a kit can be sent to your home) and then having your data stored in a database. This database is used by hospitals all over to find matches for patients in need. If you are one of them, the Be the Match Foundation will contact you to see If you are willing to be a donor.  If you still are, they will schedule a set of tests to see if you qualify. If you do, you will be asked to donate stem cells or bone marrow. 75% of donations in the US are done using stem cells.  A donor is given a medication to bump up the stem cells in their blood, which can take 2-5 days. Once the magic number is reached, a clinic will harvest the stem cells. They start an IV and draw the blood which goes into a machine that pulls only the stem cells, and returns the remaining blood to the donor. This takes about 4 hours. For a bone marrow harvest, they collect the cells under anesthesia; it takes about 2-3 hours. You do not have to take the medication prior to this procedure. They insert a needle to collect the cells from your hip area. You wear a bandage for 24 hours, and may experience some aching. Overall, a small price to pay to give someone life!

Be The Match: http://www.bethematch.org/Support-the-Cause/Donate-bone-marrow/Join-the-marrow-registry/


Click here to read the other Causes series posts

Causes: Breast Cancer Awareness Month.

Breast Cancer affects many of us, whether directly or indirectly, myself included.  I have known quite a few people who have/have had it themselves or their loved ones have.  I will admit, I focus more on other causes in October, not because breast cancer isn't worthy or important, but because it's not the only one that is.  My friend, Taryn, was gracious enough to share her story and that of her family with me and now all of you.  How and when breast cancer affects people can vary a lot, just like with many other things, and this is her story.

We all know that October is Breast Cancer Awareness month.  We all see a lot of pink on a daily basis during the month but what does it mean for someone who has been personally affected by this.  I have been affected by this cancer in many ways, my maternal grandma, my paternal grandma, along with great aunts (my paternal grandma’s sisters), and countless friends.  These life touches are on top of the fact that I am a previvor, I carry the breast cancer gene and will one day most likely develop cancer.  I’m sure most people will be shocked that I say that so bluntly but it is my way to deal with it and it is also a real fact for me.  I originally wrote this blog post after Angelina Jolie came forward with the fact that she had a double radical mastectomy.  By no means am I belittling the decisions that she has made for her body but am talking about my choices and my decisions.

Before I get into the facts about BRCA I am going to go back quite a ways on why I decided to get tested and how we found out that our family had the gene (and the shock of the side that had it).

Going back to way before I was even born, my maternal grandma was diagnosed with breast cancer in about 1952.  My mom was born in 1954 my grandma passed away 12 years after my mom was born.  In Nature Outlook Journal there is a statistic listed that from 1944-54 there was just a 40% chance of survival rate to 5 years.  By 2004 that same statistic was up to 85.8%.  

 

 

My mom and her sisters always prayed that they would get passed the age of 52, the age at which their mom passed away.  Her cancer went on to spread to her bones.  They all got passed this age and had mini little parties.  We were always worried about this side of the family.

 

 

In January of 2003 my paternal grandma was diagnosed with breast cancer.  She has been cancer free from that time forward.  My grandma had 2 sisters, 1 was diagnosed with ovarian cancer and died of this at the age of 83.  The other sister was diagnosed with breast cancer at 52 and died at 72.  We do not know if these sisters had a genetic mutation as they passed away before we started the testing.

 

 

My paternal aunt decided that she would like to find out if we do carry the gene.  They started the genetic process after seeing these strong indicator of genetic possibility.  My grandma was tested and she was found to have a deleterious mutation on the BRCA2.  My aunt proceeded to get tested at this point, there was a 50-50 chance that my aunt would have it.  My aunt found out that she had this mutation also.  

 

 

My father decided that he would not be getting tested for this mutation, as what he had to change due to age didn't warrant knowing in his mind.  I decided that I wanted to have my test done.  At this point we didn't know if I would be able to be tested as the link wasn't there for me.  The genetic counselor decided that it would be a good thing for me to be tested.  I came back positive also (this was July of 2011).  At this point we were batting 100%, grandma, my aunt, my father and myself. Grandma's gene's are strong!!!

A maternal aunt of mine went and talked to a genetic counselor and they said that there was a very very small chance that that side of the family having a genetic mutation.

There are many facts and myths out there.  I am going to start with some facts and then go into the myths.

 

Facts:

With BRCA1 or BRCA2 the chance of getting breast cancer is 50%-80% (87%) depending on what statistic that one looks at, general population 7%.

With BRCA1 or BRCA2 the chance of getting ovarian cancer is 27-44%, general population <2 o:p="">

If you are male and have the BRCA1 or BRCA2 gene you have a 6% chance of getting breast cancer compared to .05% of general population.

If you are male and have the BRCA1 or BRCA2 gene you have a 20% chance of getting prostate cancer compared to 15% of general population.

If you have BRCA1 or BRCA2 you have a 2-4% chance of getting pancreatic cancer compared to <1 general="" o:p="" of="" population.="" the="">

You can not be denied insurance coverage because of the genetic testing. You can not be denied a job for having the genetic testing (thou the United States Armed Forces can deny you).

Myths:

I won't have insurance just because of this test, can't happen Congress has passed this as a law.  Fact see above.

Breast tissue is only in your breasts (what is in front).  Fact: Breast tissues goes all around to the back of the body, these are hard places to find tumors if they start there.

What can be done?

In this section I will talk about what I am doing about my positive diagnosis. I will also talk about what can be done.

I have decided to NOT get a mastectomy at this time due to using other surveillance methods.  The mastectomy would reduce my chance by about 90% but as with the fact that breast tissues goes a lot farther than can be removed with a mastectomy.

I have decided to NOT have an oophorectomy (a hysterectomy along with my ovaries) at this time due to wanting to have children. I will most likely have this completed in the next 10 years if not 15 years.

I have also decided to NOT go on any drugs to reduce my risk, drugs such as tamoxifen, my grandma took something like this for a total of 7 years, 2 year of it was tamoxifen and 5 years of another drug after her breast cancer to help keep it in remission.

I have decided that I will get semiannual testing, for myself in February I get a breast MRI, this is due to the density of young breasts.  In August I get my annual mammogram.  I have twice had to go back in for more testing, I am thankful that I have never had to have biopsy but I have had to have ultrasounds.  At my yearly female exam they do an ultra sound to check my ovaries, if anything would come back abnormal there we would get another ultrasound in 6 weeks.  At the age of 30 I will also start getting a blood test to check for ovarian cancer.

If you have made it this far you might be wondering what my hopes for October are. My hopes for October are that we no longer have to have an awareness month for breast cancer that we can stop seeing potato chip bags, lip gloss, batteries and everything else under the sun in pink for the month of October.  I hope that we will have a cure so that we can focus on other awareness’s by no means am I saying don’t buy the pink items, they do help but to be aware of why you are buying pink and to think about it all year and not just for one month. 

Please ask any questions that you have! Also please feel free to share this!

 

Note from Ali: I do not want to turn this into an entire different post, but this is one statistic I did not know about until recently.  While I clearly have no issues with formula feeding babies and toddlers (my own has been thriving on formula since she was 10 months old), this is important for women to know. From the American Cancer Society, "For every 12 months of breastfeeding (either with only 1 child, or as the total period of time for several children), the risk of breast cancer decreased by 4.3%, compared to women who did not breastfeed. Risk decreased by 3.4% for each child breastfed, compared to women who did not breastfeed.  This lower risk did not differ by women's age, race, numbers of births, age at birth of first child, family history, or country of residence."  Read more on this correlation here.

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If you have a story you'd like to share regarding a specific cause, please feel free to contact me using the contact tab above.

Causes: My Daughter has Vesicoureteral Reflux (VUR)

As part of my Causes series and in honor of Rare Disease Day, I am sharing Carlee's Vesicoureteral Reflux (VUR) story.  I found Carlee's mom, Morgan, on Instagram by searching #Neocate when we were considering switching Myra from breast milk to an amino acid based formula due to her own rare disease.  As a mom of a child with a rare health condition myself, I can completely relate to the lessons she has learned.  I loved reading their story and I am so glad Morgan was willing to share it.

Every parent says “We don’t care if it’s a boy or a girl as long as we have a healthy baby.” But what if you don’t have a healthy baby? What if from day one your precious little bundle of joy is sick? In and out of hospitals and doctors offices and you don’t have a clue what is going on? What then?

Our daughter, Carlee, was born full term and even though I ended up needing an emergency c section, she seemed to be happy and healthy. We were sent home 2 days later and everything seemed perfect. 

When she was 7 days old she became extremely lethargic, refused to eat, and had blood in her stool. Carlee spent the next 5 days of her life undergoing tests and being monitored very closely at our local Children’s Hospital. The doctors couldn’t seem to agree on what could be causing the lethargy and bloody stool. All of the tests came back fine and she seemed to be getting better. They switched her to a new formula, Nutramigen and diagnosed her with protein intolerance. We were sent home. We took her for weekly weight checks at her pediatrician’s office. She was still not gaining weight and still had blood in her stool. We were referred to a GI specialist who immediately prescribed her Neocate formula. The Neocate worked wonders and our little girl finally started gaining weight.

When she was 4 weeks old her doctor noticed that her kidneys felt a bit swollen and sent us for an ultrasound. She was diagnosed with Hydronephrosis (a backup of urine that causes the kidneys to swell) and referred to a pediatric urologist. At this point I was freaking out. I had no idea what Hydronephrosis was and what this meant for my baby. Of course I did what every nervous mom does and searched the internet for answers while we waited for her Urology appointment. I found very little and that only made me more anxious.

At 3 months old, Carlee’s Urologist sent her for a test called a VCUG (Voiding Cystourethrogram). A VGUG is an X-ray that helps determine the bladder capacity and emptying abilities. A catheter is inserted so dye can be injected. As the bladder is filling with this dye, X-rays are taken. The catheter is then removed and additional X-rays are taken while she urinated. Once the bladder is emptied, a final X-ray is taken. The entire test takes approximately one hour. – Now imagine all of that happening to your precious 3 month old who is scared out of her mind. It was awful and unfortunately it was the first of many.

The VCUG showed that Carlee had Vesicoureteral Reflux (VUR), also known as Kidney Reflux. VUR is the abnormal flow of urine from your bladder back up the tubes (ureters) that connect your kidneys to your bladder. Normally, urine flows only down from your kidneys to your bladder. She also had a duplicated ureter, which meant that she had an extra tube connecting her kidney and bladder that should not have been there.

VUR increases the risk of urinary tract infections which, if left untreated, can cause serious kidney damage. Other complications include hypertension and kidney failure. While some children outgrow this, some need surgery to cure it.  

When I heard this news I was at first relieved that we finally had an answer, a name to call it. Then, I was so upset that there was something wrong with my little girl that I couldn’t fix. I could cuddle her, love her, sing to her, feed her, change her, and none of that would fix this. I was completely dependent on what the doctors could do.

Carlee was prescribed an antibiotic to take daily to prevent possible infections. The plan was to pray that she would outgrow this as she got older. She would have tests every 3 months to monitor the condition of her kidneys and to see if the VUR got better or worse.

I am the type of mother who needed to know everything about this condition in order to get through it. I searched and searched for more information to better understand VUR and duplicated ureters. I only found medical mumbo jumbo articles that didn’t make any sense to me. I needed to know what was in store for my daughter and what we do if she doesn’t outgrow it. I finally found the support I needed in several Facebook groups for parents going through the same thing. I talked with several mothers who seemed to be experts on this and relief washed over me. My daughter was not the only one dealing with this. This was not something I would have to go through feeling we were alone in this journey. Over the next few months I learned so much about VUR from hearing other people’s stories.

Carlee was the happiest baby. Even through all of this she always had a smile on her face. She was beautiful, smart, goofy, and most of all strong.

Right after her 1^st birthday she started getting sick. Her pediatrician said it was a cold and sent us home. This was nearly 9 months after her diagnoses so I figured it probably was just a bad cold.  Tylenol and Motrin were not helping her fever. The next night her fever sky rocketed and she started shaking and staring off into space. She wouldn’t respond to us and we called an ambulance. We chose to go to our local ER because it was closer than the Children’s Hospital. The ER doctor…..how do I put this….well he was an idiot. He didn’t even know what VUR was. Told us that what definitely looked like a seizure to me was just “the chills” and sent us home. Her fever went back to normal so we went home and hoped she would rest and be better the next morning.

She wasn’t better the next morning and we took her to the Children’s Hospital. After we told them her history with VUR they immediately did a Urinalysis. Since she wasn’t potty trained being only 12 months, they had to insert a catheter to get a sample. My poor baby had to be held down because she would not be still. I felt awful because she was so scared but I knew that it needed to be done. The results came back a few hours later and she did in fact have a UTI (Urinary Tract Infection).

Now I’m freaking out (in my head of course so I don’t upset Carlee.) Does this mean that the antibiotics that she takes every single day are not working anymore? What do we do now? Why does she all of a sudden get a UTI after 9 months of having no problems? Nothing made sense.

She was put on another antibiotic for 10 days to fight the infection and sent home. She seemed to get better. Her fever was gone, she started to eat better and seemed more like herself. After she was finished with the 10 days of antibiotics we were told to put her back on what she had been taking daily to prevent infections.

One week later it all started over again. High fever, not eating or drinking, and Tylenol was not helping. We called her Urologist and were sent in to test her urine again. She had another UTI. That makes 2 in less than 20 days…

She was given yet another antibiotic and we were told to call if her fever did not go down soon. She wouldn’t eat or drink. She wouldn’t play with her toys. All she wanted to do was cuddle with mommy or daddy. She started throwing up every time we gave her the antibiotic. We called her Urologist and he said to come in right away. He wanted her admitted for IV fluids and antibiotics. She spent 2 days in the hospital confined to a crib/bed because of the IV. It was heartbreaking but I knew all I could do was be strong because that was the only option. Once she started eating and drinking again we were finally able to go home.

 

A month later she had another UTI. Her tests were moved up and a DMSA test was added to evaluate kidney function. The tests showed that her Hydronephrosis and VUR were both getting worse. Her left kidney had some scarring and her right kidney had decreased function. Now remember those support groups I was a part of? I knew the minute I heard this that she was going to need surgery. It still did not make hearing the doctor say it any easier though. We were given 3 options:

1.    Give her more time. Stay on antibiotics and keep praying that she would outgrow this on her own. (The doctor said this was very unlikely at this point but that he would give her a little more time if that’s what we truly wanted.)

2.    Deflux, a minimally invasive outpatient procedure, a gel material is injected around the ureter opening to stop urine from flowing back up. (50%-60% success rate for her grade of VUR and it was likely that she would need a second Deflux procedure)

3.    Ureteral Reimplant, open surgery where the ureters are re implanted into the bladder to correct reflux. (93%-98% success rate, 2 day hospital stay, 2-3 week recovery)

How does a parent choose? I trusted her doctor completely and knew that we couldn’t just wait and see if she outgrew this for any longer. We needed to choose between Deflux or reimplant surgery. We loved the idea of Deflux since it was an outpatient procedure but we didn’t want to have to put her through that twice. Even then the success rate was low. If it didn’t work she would need the reimplant surgery anyways.

We hated thinking about our baby girl having such a major surgery like the reimplant but it really seemed like the best choice for Carlee. It was going to be extremely hard but we knew it would be worth it in the end. She would be VUR Free and she wouldn’t be in and out of the hospital anymore. Nearly every VUR parent has to make this decision at some point and there is no right choice. Every child and situation is different.

When Carlee was 16 months old we walked through the hospital doors scared out of our minds. How were we supposed to hand our daughter over to these doctors and nurses and trust that they would bring her back to us? I know it sounds dramatic but when you are a parent in that moment that is what goes through your head. The hardest thing I’ve ever had to do is watch my little girl fall asleep under the anesthesia and then leave her.
The surgery was supposed to take 2-4 hours. It ended up taking close to 7 hours, 7 of the longest hours of my life.

 

The surgery went great and we went home 3 days later. Carlee was such a trooper. The day we got home she went right back to playing and running around. She still needed pain meds for a good 2 weeks but she bounced back faster than any of us thought she would. Kids surprise you.

On February 28^th 2013 (one year ago today) she had more testing to see how well the surgery helped. Carlee was VUR FREE!!

Right before Carlee’s 2^nd birthday she had one more ultrasound scheduled. We were not expecting to hear that while her VUR was gone, one of her kidneys had healed too tightly and was not draining completely. She needed another surgery. The doctor needed to place a stent so that her kidney would drain completely. It was a very short 10-15 minute surgery and the stent would be removed 6 weeks later. She had the surgery a week later.

We got home that afternoon and Carlee was in horrible pain. She was having bladder spasms and would not urinate because it hurt so much. We called the doctor and he prescribed something for the spasms. It did not help. Her body was completely rejecting the stent. Two days after it was placed the stent was removed. We spent another 2 days in the hospital because my sweet girl was so traumatized by the painful urinating that she refused to go. She held it for so long that the nurses had to drain her bladder with a catheter several times. The Urologist and I had a serious talk and he explained that if she kept holding it for so long it was going to continue to hurt when she released it because her bladder was being stretched. If this continued I would have to learn to use a catheter to drain her bladder at home.  We decided to take her home where she would be more comfortable and relaxed. We hoped that this would help her get back going more often. She did better after about a week.

Last month, we had more testing to see if the stent helped even though it was only in for a few days. We got the greatest news ever. Her kidneys are draining and her bad kidney has increased in function! We don’t have to take her back for more testing for an entire year. How amazing it was to hear that! After 2 years of this hell it is finally over. My little girl can finally just be a happy and healthy little girl and not go through tests all the time.

She still associates going pee with pain sometimes. We are still working with her on that. Otherwise she is a normal 2 ½ year old. She is my crazy, bossy, sweet, funny, smart, strong, loveable little girl. And I would do it all over again for her if I had to.

I have learned so much in the last 2 years.

I have learned nearly everything about a kidney condition that I didn’t even know existed before. I’ve learned that no matter how bad you think you have it, there is always someone else out there that is dealing with more than you are. So be thankful for what you have even if it’s not very much. I’ve learned that being a mother changes you completely, and being a mother to a child with health issues changes you even more.  I’ve learned how lucky we are to have so many friends and family there for us along this journey. I don’t know what I would do without them.

Thank you for reading our story and for the opportunity to share it. If your child is dealing with a kidney condition or any health problems, remember that you are not alone.
      
          “Sometimes heroes reside in the hearts of small children fighting big battles."

(Carlee with her little sister, Sophia.)

You can find Morgan on Instagram at mommyoftwo72049