What's More Important?

Halloween 2009 - Annie theme

 

Ever been asked the question “what’s more important?” when making a decision? In most cases it’s a pretty simple answer, right? Heck, in almost all cases, when it boils down to it, it’s damn easy. Your children. Family. Friends. The people in your life.  The people make the difference, the memories, the miracles; they are the pieces and parts that matter. 

So, when the question is raised, “what is more important?” it’s a no-brainer. Except the mere fact that we are adults. With responsibilities. And nothing could be more complicated. There are bills to pay, jobs to report to, meals to plan, and child-care to attend to. As grown-ups, we must pay attention to the economy of today and make plans for tomorrow. We dutifully shoulder the burden of our elders, while caring for our young. Responsibly, we watch the news, ads, & listen to NPR in hopes the best candidate will present themselves to run the country so laden with complications and distress it sometimes seems irreparable, hopeless, and beyond a shadow of hope for even the best man to fix, let alone the lesser of the two running evils. A wise friend of mine once said, “life is hard,” and we certainly know the answer to the question above just ain’t easy. Certainly not as easy as we’d like it to be. So, what is more important couldn’t possibly be easy to answer in every situation of our lives and we certainly cannot do it all.

Thus, when the question reared its ugly head in my brain days before Maddy’s next dosage increase, I had to consider it. Not only did I contemplate, in fact, what is more important, but also why I continue to beat myself up over the response. The real one. The way I needed to respond anyway. 

Days before returning to work – heading back to the classroom after my amazing summer off with my family & friends, I considered my options and it weighed heavy on my mind. I went into my classroom to get a head start organizing, moving & rearranging. I met with other teachers for curriculum planning and in an attempt to really jump the gun did some scheduling and other prep work from home. My head swarmed, as the days approached. Like most teachers, most people, really, I was under pressure - I had a considerable amount to do, little time to do it, and our big debut, was nearing – the first day of school! Professional development day one & Maddy’s appointment day merged this time and it was approaching, even though I knew what I needed to do, I wavered - how I could manage it all? 

The dose.

The fact was, however, I knew what had to be done -  I had to be at work. I didn’t have a choice. My emotional state went right out the window when my professional obligations trumped personal preferences. In this case, in particular - this day - Maddy didn’t need me there, even if my Mommy Drive tugged at my heart strings until my insides ached with hurt and regret. Aside from a tummy upset the last visit, she had been doing well with the increases. At this visit, Maddy would actually increase her dose to one with a more concentrated solution. In reality, it was a simple double of her dose as she’d done a number of times, but on the dosing sheet, it looked like a large jump – making my heart jump with anticipation & expectancy all evening I was away from that office and her. We had prepared better this time around - planned a better lunch, snacks and even extra applesauce. Jason could do this without me and had the added support of part of her “entourage,” Grandma and Nanny (his mom and his godmother, our child-care God-sends!). 

The bellyache & applesauce.

When preparing for work that morning, my eyes filled with tears as I thought about the fact that I wouldn’t be at Dr. Mayer’s office  to see Maddy increase her dose, there if she reacted, to be the one she tells, “Mommy, my tummy hurts.” To be her go-to person that day. I considered my good friend who would be making arrangements to get to her son’s Kindergarten Open House the next day, running from work, to the Open House, and back to work. I empathized with another friend who would be going to her daughter’s second day of school in order to be at our first day of school instead. My heart went out to a friend just returning to work from maternity leave, pumping on lunch breaks, running from one meeting to the next, answering e-mails while eating – doing everything maternally possible to make it out the door in time to get the baby home in time for dinner, bath and a little quality giggle time before bed. All women, parents, in the same boat, thinking the same question, agreeing to disagree in their minds, but living the lie anyway… what’s more important?  

Friends make life easier!

The question has come up time and time again for me in recent years. When cancer touches your life, though, people give you a free “you need to be with your family right now” pass. But For some reason when we aren’t going through hardships, or when you haven’t gone through them yet life gets harried, in the way and we tend to forget to prioritize. We become over scheduled, over booked, and lose ourselves. Sometimes, we allow other people to demand our time and energy. We forget where it is more important to spend our time or sometimes just can't find a balance between work and home. We don’t forget what is more important, we KNOW. It’s not that black and white. It is a question that can’t be answered simply.

 If the choice were mine, if I could be involved 100% in the most important aspects of my  family’s lives, I’d never miss one of my husband’s oncology appointments – including PET scans  or Avastin infusion treatments. If “what’s more important?” were the true determining factor in our days’ choice, I’d call in sick for myself once in a while or simply take a break. If the importance factor played a role every day, I would be able to attend every one of Maddy’s school party’s without keeping my phone on my hip for fear of the dreaded call with news of anaphylaxis, need for the epi-pen, or that the ambulance is on its way to the school. The truth of the matter is the choice isn’t always mine no matter how important it is – work, money, obligation. Requirement. So, why beat ourselves up, why push ourselves to do it all? 

Dosing hour is u

Jason and Co. were great to me that evening, sending me pictures, and texts, step by step throughout the evening. If I hadn’t been hosting my Middle School Open House, I probably would have been Face - Timing Dr. Mayer and watching it live! She did have a bit of a belly ache so snagged another applesauce from Nurse Amy by flashing her sweet smile  - more plans were made to avoid those stomach pains in the future and to prep for school, earaches and impending illness, but really, “what’s more important?”… continuing as scheduled with Maddy’s next dose and moving forward toward freedom from peanuts, or me having to be there for every second in her life? I survived, and thanks to all who are helping us, she will, too!

Back to School with Peanut Allergies

It is a busy time of year for us - sale signs adorn store entryways, deal flyers stuff our mailboxes, and the Target ads get funnier and funnier. Maddy’s birthday usually marks for us a silent countdown until those dreaded words are uttered in our house… "almost time to go back to school.” I don’t know who says the words first, certainly never me, though I may be the one who begins the lists in my head. In the home of those suffering from food allergy, back to school does not only mean an uptick in the good ol’ budget due to extra pudding packs, lunch meat, and Ziploc bags. Unfortunately, to parents of children with food allergies, back to school is a time of high apprehension and concern, no matter how many times you’ve been there, done that. 

Peanut desensitization holds many new promises!

Each day, our baby leaves our arms and is welcomed into those of the cold building called school where every child is supposed to feel belonging and welcome. I must trust they will take care of her for the day – feeding her snacks and lunch; wholeheartedly I need to have faith in a system that tells me that if an emergency occurs they will take the same care I would. Every day. Since the beginning of our desensitization journey, this thought has loomed. It came up at almost each conversation with Dr. Mayer and often with others, obviously it worried me. School. How would desensitization affect Maddy at school? Better yet, how much more was I going to have to worry about her being at school than I already worry about her with just a regular ol’ peanut allergy? The truth for food allergy families is that it is hard work. It is hard work to make sure your child feels safe, healthy, and happy. 

If you have a child with a disability, going back to school means reiterating your situation again and again... and again.  It means constant communication and being proactive with any and everybody that will listen, come in contact with your child or anything your child might touch. It is meetings with school nurses, teachers, and parents. It means 504 meetings, accommodations, and explanations. My checklist does not consist of just pencils, markers & crayons, but food allergy action plans, doctor’s signatures, and epi-pens. It asks questions like, “Who on your staff has been trained with an epi-pen and understand what anaphylaxis looks like?” and “Does your school have an epi-pen in the building, it's own prescription?” and also “Who will carry her epi-pen when there is a field trip?” even as far as “What type of sanitizing product do you use and what will you use to clean the tables?” Questions that make me nervous, squeamish, and teary-eyed, but necessary nonetheless. Interestingly, this is not a checklist that was handed out at Kindergarten round-up, Open House, or even at our first 504. This checklist is one made up along the way, as I’ve learned, listened to others, and experienced the hard way. This checklist is ever changing and growing. 

1st day of kindergarten.

We had always had great experiences with Madeline and managing her peanut allergy for a number of years even. She didn’t attend daycare, we had grandparents and a family friend that helped with that. We attended a cooperative preschool where I was tremendously involved on the executive board and the school opted to go entirely nut free for Madeline and another student with a tree nut allergy. We were involved in the community. We didn’t have just great luck, but had great love for these people, our bubble. That is until our bubble needed to become just a little bigger. 

Excited for school!

In kindergarten, Maddy was in a peanut/tree nut free half-day classroom. Since she wasn’t eating lunch there, and the teacher was a parent of a child with nut allergies, I felt comfortable with policies she had put in place – no peanut/nut items for snacks, no bakery items for birthdays and if any of these came in they were not to be used. Sounded good. I spoke to the teacher well in advance and she came recommended. Getting better! We went in at open house, spoke even more, I donated wipes, extra snacks, talked to the aide about her allergy, about the cancer situation at home. All was great!

Wrong! Slowly, the truth started to come out. Policies weren’t being followed. “Just in case’ snacks quickly ran out, which told me Maddy wasn’t comfortable with what was being served or her teacher knew she shouldn’t have what the parents provided. Parents weren’t being educated about how to read labels, although the teacher sent weekly newsletters about classroom events like “Lucky the Leprechaun,” Reading Buddies, or Quotes of the Week home. The teacher wasn’t holding up her end of the deal and I was certain Maddy wasn’t letting us in on the truth about her feelings about it all just yet. She loved her teacher and didn't want to say anything bad.

Finally, Maddy told us in tears that a substitute teacher told her she had to eat the snack provided or not have a snack at all, I finally snapped like the salty pretzels being served that day. The pretzels were bagged in separate Ziplocs with no ingredients provided – again, against the initial policy – not only do we not know what could be in the pretzels that could make Maddy or the other peanut/tree nut child react, but what cross contaminants could be lurking on the hands or counter of the person’s hands that bagged those pretzels? Yuck! So, I walked in prepared to calmly discuss this with her. I also knew that this wasn’t the first time the snack had been okay’d against the policy this teacher had set forth. She needed to figure something out here. Policy wasn’t being followed, Maddy felt terrible… she’d see the problem. Wrong again! In my emotional state, Jason on chemo, my baby being mistreated & just starting kindergarten, and all this while I was working full time - I was pretty well a wreck. 

The girls at the office all getting their dose near the same time.

Her reaction was not what I expected. Rather than apologize, she went on the defensive, pulled Maddy in, asked Maddy what she should have done. Even at five years old, my daughter knew what to do and she did the right thing. She had asked for a different snack. This just made me cry (like I said, I was not in my top emotional state). This teacher was on a a power trip. Rather than do the right thing, she chose to mess with the wrong mama! It was on!

The rest of the year only went downhill. At one point I learned that Maddy and the other student with food allergies had been asked to leave the room so the other kids could have birthday treats from a bakery. There was even one celebration when the children were a part of a celebration where two very famous letters of the alphabet get married (I’ll give a clue… you very rarely see them apart, like in the words queen, quill, and quart). Everyone was invited – parents were told at the beginning of the year, children were given roles in the wedding, and a real wedding cake was ordered. The kids were excited. Maddy talked about that cake and how she hoped it was okay for her. Not one time did the teacher contact me in advance about what I could to help in preparing Maddy, or to help make a cake, find a cake, or help at all. Mind you, I was a helper. I did many things, donated, provided extras for other students. The wedding cake was not okay for Maddy to eat. Let me repeat. The wedding cake was not okay for Maddy to eat. It was the first thing we did when we arrived – look at that cake. By that time in the year, the teacher and the aide in the classroom were avoiding us, it was that bad. They knew. They knew they did not do right by my daughter. It was a sad state of affairs really.

Even as I write this I am fighting back tears. I am a mother and a teacher. It breaks my heart to think that my daughter was treated like a second class citizen in a classroom because of her allergy, a disability, something she has no control over, never asked for, and for even a split second was made to feel unhappy because she couldn’t eat a cupcake. That is exactly what happened. She told us that it made her sad that she couldn’t have the same snack as everyone else. My back to school list really includes a wish, really. I bet you can imagine what it is.

Just waiting for the day when peanuts aren't an issue at all!

Luckily, we are past that kindergarten year, and have moved on to a school and a plan with a much more responsive system in place. I thought about this as Dr. Mayer, Nurse Amy and Nurse Lety, worked with Maddy this time around. She increased her dose with very little problems - a mild tummy ache, but nothing serious and no hives this time – amazing!!! As they handed me the food allergy action plan (which Dr. Mayer said next year we will not need – seriously?!?!?), I still prepped myself to educate, advocate, and explain, explain, explain! As parents, no matter what the situation, no matter how great the school, the educator, or administrator, we will always be our child’s first line of defense. Always.

This One Goes Out To the Ladies

Before the dose, vital check.

I’ll be honest; my daughter’s peanut allergy has become one of my own defining characteristics, a part of me. “Hi, my name is Sara, I am the mother of a child with a peanut allergy,” I feel I need to preface every conversation with this explanation... or join a support group. It is amazing how often it enters into conversation. When making plans, talking to friends & before beginning the lengthy explanation at any outing, vacation, or any new adventure in our life, it is obviously important for it to be in the forefront of the convo.  I live, eat, and breathe making sure her life is more comfortable, safe, and free of danger. The peanut allergy is our reality, but doesn’t need to define us as individuals or as a family and we work toward that, but sometimes it is a relief when others “just get it.”

That is not to say our family & friends don’t try, they absolutely do! Close people in our life, the ones we call family and friends – we couldn’t ask for any better, we really couldn’t. They have supported us in ways Jason and I couldn't imagined. When I consider the level of support, the outpouring of prayers, love, and affection my family receives, I am blown away. So, when the question comes from family, friends and co-workers - “How is Maddy’s peanut therapy going?” My response is much like when people ask about Jason & his treatments - optimistic, somewhat quick & to the point while showing them my true appreciation for their thoughts & prayers. “Great! Smooth sailing! She is doing so well with it! Thanks for asking.” I don’t want to show my anxiety about giving her the peanut solution, how difficult it was to leave her the first time with other people after giving the dose, how hard it is to allow anyone else (yep, even my husband) to pull the dose to give it to her, or how scary it all is in the very pit of my gut at times. If people ask for more, I’ll give it to them – like how amazing this process is, how she is more likely to react if she exercises, or what the dose looks like now and what it will look like later.  Sometimes those I am talking to will share with me something about their own allergies or about a family member or friend who has allergies, but not many have the time for more, or even know what to ask. And that’s fine. Bottom line – Maddy’s fine, she is doing well with it and the plan is working, it is really working!!! 

Maddy's OIT support group.

Maddy is not the only one the plan is working for. She is one of nine patients participating in peanut OIT with Dr. Mayer and for this dose increase appointment Nurse Amy made the appointment intentionally with “the girls.” As I know them on Facebook, “the girls” are Ella, Livvie, and Isabella- three bold and beautiful little girls who’d begun desensitization in varying degrees prior to Maddy. I’d been in contact with their mothers via a Facebook group for months. MONTHS! In my research of Oral immunotherapy, I’d come across a number of groups - these women and their stories were among them. They shared stories, links, resources, questions, and more. I’d bared my soul to them in somewhat anonymity up till this point. These same women also shared a similar identity as me – we had a connection to peanuts that brought us together in fear, anxiety, and desperation. These were some of the very people that brought me to Dr. Mayer and desensitization. In actuality, these same women moved me toward taking the first steps by showing their own valor and tenacity and by forging ahead in the allergy world and most importantly - no longer allowing peanuts to rule their lives. 

The OIT girls goofing around - not a side effect!

The afternoon at Dr. Mayer's office was amazing! Maddy had very few concerns with her dose increase and the girls clicked immediately! They instantly hit it off and played together (more like ruled the play room, allowing no boys at all!) while the parents observed intently. We all tried to play it cool, all while keenly observing for signs of a reaction, especially those of us new to this. Jason was even able to chat it up with another attending father, while I met the moms. In my mind, these moms and these girls were heroic. They’ve paved the way for so many of us behind them and are successful; they are achieving the impossible – beating peanuts! These amazing women are amazing models for their daughters, and mine. 

In my life, I am lucky to have strong and beautiful women by my side – my mom, my mother – in – law, my sister & sisters-in-law, my own Godmother & also my husband’s, my pastor, my daily confidantes & great friends and my co-workers. It’s funny, as a young woman, I had few girlfriends, surrounding myself with mostly men, well boys. I seemed at ease with them, no problem to be “one of the guys.” As I have aged, or matured, rather, I find women bring strength and balance to my life. They understand life when the honeymoon is over. They get it when seven months into pregnancy and all you need is someone to tie your shoes, do your laundry, and cook your dinner. They feel you when seven months after pregnancy you still want someone to do your laundry & cook your dinner, and you've given up shoes that tie because they add too much to your getting ready routine. They completely get you when your night out is a night in with the girls and you come home entirely sober, smiling like a drunk, and happy as a clam that you got to have some adult conversation, your own meal, and one night all to yourself, a bit different from men. Women complete me. The women at Dr.Mayer’s office are another facet, a cluster where I belong & need to speak freely about my obstacles with peanuts & allergies - where they get me, whether I see them in the office or "like" their comments, posts & pictures on Facebook, another group I can come home to. Thanks, ladies, all of you.

Helping check vitals after dosing hour is up.

Next!

Maddy's turn!

Doing the Best I Can

The weeks that followed Maddy’s Rush Day were a test in this mother’s patience, faith and nerve. Only a fraught mother of a child with a severe food allergy could feed her child poison two times a day for the sake of protecting her “in the long run.” I believe in Dr. Mayer’s plan, have confidence in his staff & in the end product, and trust that we are doing the right thing, nonetheless each time I drew the medicine out of the bottle, placed it in Maddy’s mouth & waited with her, I second guessed myself just a tiny bit. When I give her Tylenol, Motrin, or other medicine I check and recheck the dosage. Imagine my unease in the case of peanut protein and my peanut allergic baby. Best case scenario – I was doing it right. Worst case scenario – I had the epi-pen handy. Just as anytime she’d taken a bite at a new restaurant, a new food, or when I’d seen the school’s phone number flash across my cell, I held my breath for the worst. 

That first day of home dosing was the worst… for me. I planned nothing. She & I did nothing. Fortunately we are in the stage of our summer where we are okay with pj’s, coffee and terrible TV all morning if we darn well please, thank you very much! This gets us into trouble later when school starts, but for this particular morning it was perfect. However, I watched her like a hawk, nervous as could be. The rest of Maddy’s weeks with this dose went truly well. She took the 1 ML of Solution C with great confidence every day, reminding me each morning and night of the time if she thought I forgot - yea right! And letting me know of every single itch on every spot on her body for the following two weeks… and we looked at every itch, tickle, or bother that she couldn’t see to be certain that there were no hives taking over her body, but by day four they were none. She did have a few hives the first few days, small bumps that if I didn’t know any better I would not have even thought were hives, but they were gone a few days in. That was it – her body was becoming desensitized to the amount of peanut protein in the solution. How cool!

1 ML of Solution C, 12 hours apart daily.

Physically, she has been taking the dose great. Emotionally, it took a bit of time to stick, I think. Maddy is much like both her dad and myself when it comes to showing real emotion. She is funny, of course and uses her humor to deflect any pain or upset that she may be feeling. Sometimes, she may not even know what or how things may be affecting her when they are. This started young and I’ll never forget when I realized it. Her daddy was going through his first round of chemotherapy after being diagnosed with colon cancer and having colon resection surgery at age 32. We thought she was just fine, even though she was just four years old, we had all powered on around her making her life as normal as we could. She attended a great cooperative preschool that helped us so much, we remained very positive and we had that amazing network of family & friends we hold in our bubble surrounding us. Jason even shaved his head in preparation for the treatments in September and for Halloween that year, Maddy went as Annie, he as Daddy Warbucks, and I got to be Miss Hannigan – fun times! Through the pain there was laughter and much fun, but of course there were tears and, at times, distress. I remember this time in particular because it made me think twice about how I treat my emotions in front of her. I had my moments, my meltdowns – making the bed, making dinner, laundry, taking a shower, when I simply needed to sit down and cry. Maddy found me in my moments every so often. Rather than tell her what I was upset about my line was, “Mommy’s just really tired,” then picked myself up & got back to my mommy business. Mommy was tired, but that wasn’t the whole truth – I mean come on, I was crying about all of the other things – cancer, chemo, and the other unspoken possibilities that come with “The Big C.” 

So, when Maddy melted, she had a “I just need to cry because life is getting to be too much for me at the moment and everyone keeps telling me my Daddy is sick and what the heck does that mean because sometimes I get sick and does that mean I’m going to have cancer and have to get chemotherapy and what is chemotherapy I know you told me but I don’t really get it and I saw kids at the hospital with cancer and they were really sick and am I going to have to go to the hospital and it was really sad when dad was in the hospital and I don’t want him to go to the hospital again because” meltdown, but she only said, “I’m just really tired.” I hugged her and we both cried. I knew what she couldn’t verbalize. Just as I couldn’t always, but when she said that to me, I started to tell her more of what I was sad or mad about. I started to tell her that Mommy was sad that Daddy was sick from the surgery that took the cancer out, or that he was sick with the medicine that they gave him to make sure no cancer would come back. I wanted to give her more words. She may have been just four, but she was dealing with so much. We all were. 

Maddy doesn't always let you in on any worries.

So, when a few days into desensitization Maddy shakily whispered, “Mom, I don’t know why, but I feel like I want to cry.” I knew the pressure of this was getting to her. As a dad, Jason wanted some answers, rightfully so. He wanted, “Did something happen to you? Did somebody say something to you?” answers. But as a mom, I just knew, this was my baby telling me she was just tired; one of those moments. Pressure was building. She needed mom to help her put it into words, give her some consoling, and hug it out. I learned a lot about myself as Jason has gone through cancer and treatments, too, that I can’t do all of this alone, that I need other people to help me, to walk through this with me. I have reached out in the last few years to people I had never considered that I even needed – church, co-workers, Facebook support groups, friends and family; and in ways I never knew I needed – organizations, creatively in projects, writing this blog, pouring myself into work, by sometimes taking a break, and by simply just crying. In what ways do kids have to work out their emotions? They don’t know how yet. It is my job to help her figure that out in safe and caring ways. I hope and pray that I am doing it right.

“Sometimes the biggest act of courage is a small one.”

Happy Birthday, Maddy! Seven years old and one of the most brave people I have ever known. 

Maddy’s birthday was celebrated with light sabers, Darth Vader masks and good friends in our back yard. Nine pals came bounding into our house - swim suits, towels, and flip-flops - dripping with optimism that the rain clouds would clear and fun would be had. The spread – Tie Fighter Ties, Vader Veggies & Sarlacc Pit Dip was ready. Yoda Sodas were poured, the piñata was hung and Pin the Saber on Vader was prepped - and the party had started. 

In fact, the whole weekend was a party. Our weekend was jam-packed with family & friends as we celebrated Madeline’s seventh birthday. Finally, July 30^th, after cake, ice cream & gifts, we said ‘see you later,’ whispered, ‘good-night’ to each other and hunkered down in bed in preparation for the following day – the first day of desensitization. You know that old saying – “Tomorrow is the first day of the rest of your life.” For us it held new meaning. We - Jason, Madeline, and I, were anxious, excited, nervous, not quite scared… just yet. 

Our morning was much like you might think when you are on a tight schedule and in a hurry – late and hectic. Slept right through that stupid alarm & since Jason couldn’t go with us, I was uneasy with the drive so wanted to get a good start. Rushed, unshowerd, uncoffeed, and with sleep in our eyes – we marched on toward West Bloomfield & Dr. Mayer’s office, somehow making up time enjoying the scenic route to avoid construction. 

As we entered the doors, Dr. Mayer’s staff ushered us toward the back wasting no time getting started. Lety, the nurse, gave us a customized plan for Maddy detailing her dosage plan – a blueprint for her entire desensitization program, really. It was encouraging and even hopeful. Dr. Mayer explained the strategy for the day – nobody would ask Maddy any specific questions. No, “Is your throat scratchy?” or “How’s your tummy?” These questions are too psychologically powerful and might sway her into feeling nonexistent itches, bumps or bellyaches.  More general questions like, “how are you doing?” would more likely get honest answers, or as it turned out, sometimes none at all as she zoned out in front of her DVD. 

Within minutes of these explanations, Lety checked vitals & was in with the first dose – peanut flour (dust, really) in a liquid solution. She showed it to me – illustrated its position within the list on the sheet. Madeline maintained complete composure in her presence, took the peanut solution in her mouth, turned to me, waited for the nurse to leave, and crumbled. Great big tears welled up in her eyes, her legs trembled, and she whispered, “my stomach already hurts, mom, it already hurts.” My stomach dropped to my knees. What was I doing to my child? How could I put her through this on purpose? How long will this take and am I cut out for this? Is she? It took every ounce of strength I had to not pick her up, grab our things and leave. Walk out the door and say forget it, we know how to live with a peanut allergy, we can handle that. What we can’t handle is deliberately feeding my peanut allergic baby poison … right? Right? 

Instead, I held her, rubbed her back & helped her calm down, all the while holding my own tears back. Was this the right decision? To make my child feel such anxiety and fear? My heart ached as I decided to stay. Words of encouragement came from family & friends through e-mail, texts & Facebook even if they didn’t know what had actually occurred.  As I spoke to her and held her, she calmed down, turned her attention to the television, she realized nothing was happening & slowly understood she not only could do this, but wanted to do it. She was not anaphylactic, she was not having a reaction, even a slight hive, stomach ache, or wheeze. 

In this entire process – every 15 minutes more peanut solution with an increase in the concentration of peanut protein every other time or so – Maddy just became more comfortable with the process.  I continued to update Jason, close family & even FB. I joked that with every dose increase, she was doing fine, but I was getting a tummy-ache & hives! I knew we were on the right track, though when I asked her how she was feeling and she said “Not good. Great!”  

After a few more doses, though, a mosquito bite-sized hive on her belly told us it was time to stop for the day. We’d been there from about 9:30; she reacted just after 2:00. Fearlessly, she’d said, “I think that is just a mosquito bite from Saturday,” she was ready for more.  Lety swooped in with Benadryl, Dr. Mayer, checked her vitals again and then we just had to hurry up and wait to see if other symptoms arose for an hour.  We were leaving with a smaller dose than expected, but it didn’t matter. We’d started peanut desensitization, we were moving ahead. Maddy and I were both excited about it. Dosage instructions were given, questions answered… it seemed so simple. 

In the hours I waited with Maddy, I only figuratively bit my nails & paced the floor. I poured myself into a creative outlet, and drank more coffee than I needed in one day, but I really just sat and waited with Maddy.  Dr. Mayer actually commented on the fact that I was fairly calm… inside I was a jittery, explosive, mess lying in wait for the reaction that was inevitable. I’ve had much training in being calm for those I love and for Maddy I have always tried to model keeping my composure while remaining open & responsive, especially in times where it could be difficult for her. Prior to the appointment there’d been chats about this being scary, tough, or any other emotions this could cause, but that day, I was cool as a cucumber.  Maddy has been through a lot in her seven short years, this whole family has. And she has always been stronger than I could imagine a child could be. She is the bravest little girl I know.

First dose down the hatch.

Growl Tiger goes everywhere with us.

Dr. Mayer checks vitals after the reaction.

“Sometimes the biggest act of courage is a small one.”

         ~Lauren Raffo

Two Thumbs Up

Every day Madeline faces a threat that many of us will never know. Can you imagine – ingesting food that could make you sick, or even kill you? She does. She knows that threat. She trusts adults she knows to check her food labels for what she considers “poison.” Daily we come across food that is not okay for her to eat – it contains peanuts or peanut butter, it's "manufactured on the same equipment or in a facility as peanuts," or it "may contain" the offender. Allergen statements thankfully labeled for her protection, in reality close calls when only the one that informs us of the actual ingredient of peanuts must be listed. Seriously – close calls, especially as her world and her life become larger, we must have faith, trust, and have confidence in the world around us.

Yet, somehow, my baby girl is amazingly courageous. She’s also outgoing, fun-loving, friendly, bold, even a bit daring. Maddy is clever and loves school - even in the summer she misses math! She has so many friends and always finds the best in people, even the bullies! She loves her BFF’s – Conley and Aubrey and will tell you she ‘hearts’ all of our friends and family and is always asking to get together with this family or that friend, go to Grandma Tyna’s house or just down the road to Grandma, Nanny & Papa’s house. She has an affinity for roller coasters, swimming pools, lakes, and puppy dogs. She has even recently grown to love fishing and got an awesome new tackle box from her aunt, uncle & cousins for her birthday. She has two dogs and two cats that she plays with regularly even if the cats make her itchy. Best of all, Maddy would do anything for any one of you. She is loving, giving and has the biggest heart that reaches well beyond her little body. 

Maybe Maddy’s immense heart is why it seems the ‘bubble’ we do put her in to keep her safe has seemed colossal. Maybe, just maybe, the reality is that the networks of support that care for us and Maddy have been amazing people that have been touched by Maddy’s heart, and ours.  Our support system, our friends, family, and church group have been there for us through thick and thin – and in the last few years that has been tremendous! We've strived for Maddy to have a normal childhood and life even with a peanut allergy. We have learned that we must remain positive, involved, and one step ahead to advocate & educate – ourselves and others as well as we can.  

The threat of anaphylaxis killing our child, though, is what led us to do something more. It led us to Chad Mayer, DO, of the Comprehensive Food Allergy Clinic in West Bloomfield, Michigan. In my quest for education, I’d read about possible treatments, therapies, and the most current research all along. I’d joined the The Food Allergy & Anaphylaxis Network, which has the latest & greatest information in food allergy information. I’d checked out the site numerous times, joined Facebook groups, and did my own research on food allergies. Over the years, I armed myself with information – knowledge is power!

When the possibility of desensitization, or Oral Immunotherapy, came to town, we had an appointment with an allergist in our area that had come very highly recommended by a number of people. I spoke with him for his opinion. He didn’t recommended OIT, stating the long term benefits were not yet known, referencing an article (which I’d read), by Dr. Sampson (Hugh A Sampson, MD, Mount Sinai School of Medicine; Jaffe Food Allergy Institute; http://www.asthmaallergieschildren.com/2012/05/11/oral-immunotherapy-for-food-allergy-not-ready-for-prime-time/) that suggests desensitization is just not ready for the masses. So I went home, somewhat deflated, and listened to our new allergist, whom I’d just met. I put aside all the research I’d done, all the articles I’d read, the FB groups I’d “met” in the process of completing OIT with their children - children with peanut allergies who had anaphylactic reactions when they walked into rooms with peanuts now eating eight peanuts a day. I convinced myself this was the best, that we’d do something when there was a more widely available “cure,” even though that meant  more years of 504 agreements at school, panic at the thought of school parties, birthday parties  and explanations & education to parents about the allergy. Granted we have been lucky in more ways than one with Maddy’s allergy, but as school was approaching I knew another year meant more challenges. It was for the best, right?

At the end of June, we were packing for a baseball game. Imagine my anxiety. I had already called the ballpark and they assured me as much as they could about what she could eat, but of course the park food service manager also added, “We can’t guarantee she will be 100% safe. We do serve peanuts on grounds. You need to exercise extreme caution.” Of course, but we had set out to not make her live in a bubble, to not be anxious about daily life, to cautiously approach activities rather than avoid them, so we were going. Earlier that same day though, her dad and I had been speaking about letting her grandparents take her on vacation for a few days. My anxiety piqued – vacation food was dining out, ice cream - spontaneous eating experiences. I felt the same way when my own mother wanted her for a few days. As she gets older, I’d realized - we have kept her safe, she has gotten comfortable in taking risks and she wants to live life unrestricted - why should I get in her way? So, that day, we made a decision to make a consultation appointment for OIT. Again, our entire family and our friends were supportive, even excited. Weight already began to lift from my shoulders.

Maddy’s excitement didn’t come, however, until we spoke with Dr. Mayer. Jason and Maddy both got the run-down of OIT when we visited the office in July and I learned that Dr. Mayer has the exact same protocol as Dr. Wasserman, a leader in OIT in Dallas. Again, I am no expert, but I’d done much research, followed many parents with children in different programs and had really watched this work! Dr. Mayer spoke with us directly about many different happenings in food allergy research and made us feel at ease with the process. It was exciting to see how she would start, the amount of peanut protein (dust really) and how many peanuts she will eat in the office (24) to “graduate” the program to begin the maintenance process at home. Also extremely encouraging to us was the fact that Dr. Mayer is in no hurry. He let us know that his particular protocol is particularly conservative, so if/when she reacts, her dosages will be adjusted accordingly.  This was going to happen!

Maddy was nervous even as Dr. Mayer walked in, even when he spoke to her. We had tried telling her about the process; her grandma spoke to her about the process. She humored us as we went & said she’d listen but didn’t want to do it. We made the appointment for the first day, Rush Day, the day that peanuts are first introduced into the peanut allergic child’s system. As we headed out the door into the bright sunlight of the day, Jason said to her, “Well, Maddy what do you think?” She turned around at him and smiled her gorgeous smile and put her thumb in the air then said, “No, I mean… two thumbs up.” In her book, Dr. Mayer and desensitization were in!