Archive for the ‘The Fabric of Life’ Category

Jenna, our 2-year-old, has had a feeding tube for over half her life now. When she first had it put in, I never expected more than a year later she would still need it or that we would have made so little progress with her eating. Between this and the looming probability of her needing a liver transplant, I sometimes find myself feeling discouraged, thinking “This is never going to end.” The transplant isn’t scheduled. She can’t even be put on the list until she’s finished with chemo next year, and we have no idea how long she will have the feeding tube.

A short break from the feeding tube

A short break from the feeding tube

This elusive future has been difficult for me to deal with because I am one of those people who enjoys generating to-do lists and relishes checking things off. I will, in fact, add something to my to-do list that I have already completed just so I can then check it off. My work has always revolved around Plans of Attack (POAs), deadlines, and ETAs. I’ve had control of the outcome and when things happened. But very little of that applies now to the work of caring for my daughter.

All the POAs, deadlines and ETAs in my work now with Jenna are vague and soft in nature, living in the realm of “watch and wait” and “do the best you can.” There is little to check off as finished except the day-to-day routine of medications and feeding schedule.

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Jenna may get a liver transplant next year, or in 2 years, maybe 5 years or, perhaps, never. No one knows for sure. Her liver function is monitored closely by her doctors and she has been stable for several months. While they plan to submit her to the transplant committee next Spring, assuming she is placed on the transplant list, it could be years before she actually gets a transplant. Whether she gets on the list or not, the kind of liver disease she has can develop very slowly so she could live with it for many years without being much sicker, yet never fully recover either.

As for her feeding tube, typically in cases of long-lasting food aversions or eating issues, they’d replace the feeding tube (NG) with something more long-term, less conspicuous and easier to maintain. But because of Jenna’s particular liver disease, it is too risky for her to get that. And no one can make her eat, nor would we want to. We aren’t even sure why she won’t eat.

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So I’ve been working on how to live freely with all this uncertainty. I can tell this will be an ongoing process…

What I’ve noticed in my quest so far is that actually looking for certainty in our lives is the beginning to finding freedom. This is a lot easier to do if I’m not thinking too far ahead or too far back. For example, if I think of only today, there is a lot I am certain about. Jenna will need her morning meds, chemo and evening meds. She will need a certain amount of formula pumped through her feeding tube today and all that involves. She may or may not sign “eat” during the day, but if she does (and even if she doesn’t), we will offer her food. Whether she eats it or not we cannot be certain of, but we will keep trying.

In a week I can be certain of the same things, plus a couple more like blood draws and doctor appointments. Occasionally, I take glimpses ahead 2, 3, 4 weeks, but I usually stop at a week. Any further out than that and there are too many unknowns. In fact, I rarely plan or think further out than a week and often say in my defense (mostly to my son), “That’s too far ahead to think about.”

Girl on the go, wearing an apron I made for her

Girl on the go, wearing an apron I made for her

Going the other direction, if I think too far back, evaluating how long Jenna has had the feeding tube or how many times we’ve gone to ER, etc., or comparing our past experiences with the present, there again I can get trapped and feel discouraged and insufficient, thinking things should be different from how they are or that I should have done something differently. So it’s just better all around to stay focused on short amounts of time in the present.

Another thing I’ve noticed is the importance of celebrating the successes, big and small. Like the week Jenna ate two raspberries and a blueberry. Or when her bilirubin blood test result was below 3 for the first time (normal range is 0.1 to 1.0). Or when she learned to walk. I might even be able to celebrate that it’s been over 3 months since we’ve made a trip to ER if I’m careful not to evaluate anything about that. When I am looking for success and progress in our daily and weekly lives, instead of shortcomings and “failures,” life looks better, the future tolerable, if not bright.

The other thing I’ve noticed is when I don’t get a break, away from the house, from Jenna, it does feel like it never ends because, well, it doesn’t. Pretty much 24/7 I am Mom/nurse. Getting away is something I’ve always struggled with. I’m a “home body” at heart. But it really is imperative that I get out without my kids once in a while, ideally on a regular weekly basis. Funny this feels like it will be the most difficult to do.

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I don’t feel I’ve found all the answers yet. This path we are on with Jenna is certainly an uncertain one and learning to move freely along its twists and turns is imperative. So much of it is out of our control, and the sooner we can allow ourselves to meander with ease, the better. Sometimes when I am looking at Jenna I think she has all the answers, all the wisdom. She doesn’t get discouraged or feel overwhelmed by her life. She doesn’t worry about what might happen in the future. She doesn’t seem to realize she is sick or even that something is wrong. She just takes it as it comes. Perhaps the answer isn’t “out there” somewhere, but is and has always been right in front of me.

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When I found out my son and I had a gluten intolerance, especially to oats, I started experimenting with favorite recipes. Peach Crisp is one of the many I’ve worked on and though our family really enjoys it, even my husband who isn’t gluten intolerant, I’ve never shared it with anyone else. So if you end up trying this, let me know how you like it!

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Tiffiny’s Gluten-Free Peach Crisp

Peach ingredients:

2-3 sliced fresh peaches (or more if you like)

1 Tbsp butter

1/2 cup pure maple syrup

2 tsp lemon juice

1/4 tsp cinnamon

 

Topping ingredients:

1/3 cup brown sugar

1/2 cup softened butter

1/2 cup sweetened almond butter (use crunchy style for more texture)

1/4 tsp gluten-free vanilla extract

1-1/4 cup brown rice flour

3/4 tsp baking soda

1/4 tsp salt

1/2 tsp cinnamon

1/2 cup walnuts (optional, for more texture)

 

Preheat oven to 375 degrees.

Placed sliced peaches in a baking dish (9×9 or 8×8 or comparable). Combine the maple syrup, lemon juice and cinnamon and pour over the peaches. Dot with the 1 Tbsp of butter. Set aside.

Mix all the topping ingredients together until well mixed. Then dot small bits of the topping onto the peaches until the peaches are covered. (You may have extra topping leftover.)

Bake for 25-40 minutes, until peaches are bubbly and topping is browned. A shorter cooking time will make your topping more cookie-like, while a longer cooking time will make it crisper.

Let cool until firm, and serve warm. Yummmmm!

(If you use unsweetened almond butter, you may want to increase the brown sugar.)

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This will be my last peach recipe this season. I was going to do peach pie next but why? There are a million peach pie recipes out there so what’s the point. I’m not doing anything new or even trying to make a gluten-free pie. Nope, just using the recipe straight out of my 1956 Betty Crocker Picture Cookbook.

Also I’ve realized since my daughter’s condition has been stable and she’s in remission, instead of trying to find a new normal, I’ve tried to go back to the old normal, which is basically impossible. I’m not sure if I’ve been in my usual overachiever mode or if I’m in denial. Maybe both. Either way, I’ve been really stressed and need to back off on some of the things I’ve been doing. Extra cooking, extra blogging, extra anything, I’m cutting back on. So I may not be blogging as much but I’ll still be here, so don’t give up on me… = )

Until next time, Happy Peach Season!

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One of my favorite peach dessert recipes from childhood is Peach Cobbler, eating it fresh out of the oven on a brisk fall night… Never mind that the evening I made it this week it was still in the 90s, it was still delicious in our air-conditioned house, though not quite the same ambience as I remember.

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Taken from my 1950s Betty Crocker cookbook handed down from my maternal grandmother to my mom to me, and held together, yes, by duct tape, I converted the original recipe to gluten-free and updated it a bit (like using butter instead of shortening.)

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Gluten Free Peach Cobbler

(original recipe from 1956 Betty Crocker Picture Cookbook, Revised and Enlarged)

 

2/3 c. plus 1 Tbsp. sugar

1 Tbsp. cornstarch

1 c. water

3 c. sliced fresh peaches (or more if you like)

1 c. all-purpose gluten-free flour (I use Bob’s Mills)

3/4 tsp. xanthum gum

1-1/2 tsp. baking powder

1/2 tsp. salt

5 Tbsp. butter, softened to room temperature

1/2 c. milk (I used almond milk)

Cinnamon

 

Preheat oven to 400 degrees.

In a saucepan, mix 2/3 cup sugar, cornstarch and water. Gradually stir in peaches. Bring to a boil and boil for 1 minute, stirring constantly. Pour into 1-1/2 quart baking dish and dot with 2 tablespoons of butter. Sprinkle with cinnamon.

Mix together flour, 1 Tbsp. sugar, baking powder, salt and xanthum gum. Cut 3 tablespoons of butter in “with pastry blender or 2 knives until mixture looks like “meal”…” Stir in milk. Drop by spoonfuls onto hot peaches. Bake 25 to 30 minutes or until golden brown. Serve warm.

Serves 4-6

(If you want to make this a non-gluten-free recipe, just substitute regular all-purpose wheat flour in the same quantity, and omit xanthum gum. Also, Betty recommends using up to 1 cup sugar mixed in with peaches. I went with the 2/3 cup myself.)

ENJOY!

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My favorite time of year is approaching. Autumn, you say? Well, I do enjoy autumn, but actually no, my favorite season is Peach Season!

I missed Peach Season last year being in the hospital with my daughter. So I’ve vowed this year to make the most of it! No peach will be left behind!

This week I made a Peach Galette, one of our many favorites. It’s based on a Nectarine Galette recipe (shown below) I found on RealSimple.com. Sugar content is relatively low which is a plus. And it doesn’t take long to make. It’s so delicious as a dessert or even breakfast. Or, let’s face it, anytime of day. We love it!

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I planned to make this in the afternoon, but the day got away from me and by 7:30 I still hadn’t made it. My husband works at night and getting everybody in bed on time by myself doesn’t always go well. Even on a good night, cooking during bedtime isn’t a good idea, but I really wanted to use the lovely peaches we’d picked up from the farmer’s stand the day before. Unfortunately, tonight wasn’t going very smoothly. At 8:30 I was no closer to getting anybody in bed than I was at 7:30 so I decided, what the heck, I’ll make the Galette now.

Preparing the crust, slicing the peaches, sprinkling the sugar were all a small escape from the chaos. I put it in the oven, happy to have something yummy to look forward to, and felt ready to conquer bedtime again.

Bedtime was getting back on track when I took the Galette out of the oven. Perfect! But when I tried to move it to a pretty platter to take a picture, it started cracking. Agh! I hadn’t cooked it long enough! It was now 9:30 and whether it needed to cook longer or not, I was done. After a brief series of expletives I took a few quick close-ups, used the wonders of photo effects to cover my errors, then sliced the Galette. I carefully scooped a slice onto a plate but it ended up a lumpy pile of peaches and crust. Oh well. Two slices later and I finally felt I could handle getting the kids to bed. Very little went as planned but, you know, sometimes life isn’t very pretty but still delicious.

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As we celebrated Jenna’s 2nd birthday this week and as the one-year anniversary of Jenna’s diagnosis approaches, I feel nothing but gratitude

I am so grateful for Jenna, for her sweet, glorious spirit, her breathtaking smile, her delight in life and for her being part of our family.

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I am so grateful for the many wonderful doctors and nurses who have cared for Jenna, at the hospital and at home… Those hospital staff members who have made her procedures, clinic visits and hospital stays go smoothly and our experiences as pleasant as possible… The oncology and transplant social workers for their empathy and kindness… The hospital volunteers and therapy dogs who went out of their way to make Jenna’s hospital stays more pleasant… The music therapists who helped us write a song for Jenna and entertained and stimulated her with music during our long stays… Our family chiropractor who has offered supportive therapies during Jenna’s chemotherapy and for our friend Holly who has done energy work to help Jenna (and our family) process and deal with the trauma and stress of the past year… For Cindy, Jenna’s occupational therapist at home and for all those who helped with horse riding therapy this summer… For the home healthcare staff… And for modern medicine and the drugs that have healed and stabilized Jenna.

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I am so grateful for my husband, Mark, who has been so loving and supportive, who has worked 2 jobs to help pay our extra expenses and make up for me not working, even when he didn’t want to, who has bent over backward to make my life easier, for being an awesome husband and father, and for being the night nurse at home… And our son, Ryan, who has been so courageous and strong through all this, who’s been so tolerant of being shuffled back and forth between home and Gramma’s so many times, who has such a compassionate, caring heart and loves his little sister so much!

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I am so grateful for my mom who is… amazing! In the face of caring for a disabled husband, she has taken Ryan overnight many times, shuffling him back and forth between school and our home and her home, came to the hospital when Jenna was admitted as often as possible to spell me off, has kept tons of people abreast of the situation. Even now she watches Jenna 3 mornings a week so I can have a break. She brings us food so I don’t have to cook. She watches the kids so we can have dates. She will do anything she can for us. She has taken care of me when I didn’t have the energy to care for myself. She is generosity personified. She is and has been amazing!

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I am so grateful for my in-laws who have been unbelievably kind and generous during all of this, visiting as often as they could, being understanding of us being unable to visit, and providing support and love from afar.

I am so grateful for my sister, Teresa, who checks in with me regularly, making sure I’m (relatively) ok, who cheerfully visited us in the hospital on many occasions bearing dinner and chocolate and laughter. And for encouraging us to let people help us financially, helping us set up a donation site, and sharing it like crazy… For my aunt Kelly who visited us during each hospital stay, kept me company on lonely nights and watched Jenna so we could take Ryan out for some family fun.

For Heidi, who insisted I go hiking with her during that first month-long hospital stay, who brought us dinners and checks in regularly to see how things are… For Stephanie, Missa, Kristina, Karen, Natasha, Melissa, Sally, Lou, Sabina, Ka and Becky who brought us delicious, nutritious dinners and hugs, and seen our family through a lot of life over the years… For Angella, a friend of Mark’s who I’d never met, who came to the hospital, brought Jenna a lovely book and read to her so I could leave the room to eat dinner… For Melinda and Craig who took me out to lunch and listened and listened and listened some more… For Katy and Erin for driving long distances to visit and bring me fancy chocolates and nutritious treats… For countless neighbors who helped clean our house, mowed our lawn, brought flowers, helped with Ryan, and been kind, generous and compassionate.

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I am so grateful for those friends who have reached out and shared their experiences of caring for family members with cancer or similar diseases, for their empathy, love and support.

I am so grateful for my husband’s business associates, most of whom I didn’t know, who have been so very generous, providing cleaning services, donations, gifts, home improvements, organizing fundraisers and for being so caring and supportive of Mark during all of this… For Marilyn who organized donations of 3 months of frozen meals from Dream Dinners for our family.

I am so grateful for my stepsisters and their in-laws, who we’ve never met, who adopted us for Christmas and made the holiday special for our family in every way.

I am so grateful for Holly, Erin and Mark P. for working on my sore muscles… And for Cindy, Stephanie and Davi who have pampered me along the way.

I am so grateful for HopeKids, for the people who organize their events and volunteer, for the businesses who generously donate and give our family fun things to look forward to other than doctor visits.

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I am so grateful for Mark’s employer, the great benefits we have through them, the support of his team members and supervisors, and the company social workers who have offered their support since this all began… For government support which we’ve been reluctant to use but are grateful to have, and for the government employees who have guided us through the process with kindness and compassion.

I am so grateful for those people who visited us in the hospital, brought or sent treats, food and gifts, followed us on Facebook, shared our story, donated money, thought of us, prayed for us, called, texted, sent cards, sent their love, sent emails, offered to help, listened, or reached out in any way to let us know we were loved and thought of. All of you made a difference for us and lightened our load.

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There were many months I wasn’t sure Jenna would get through this, when I thought, “This will never end.” And yet here we are, not at the end, or even with an end in sight, but Jenna is well, better than ever, our family is whole, intact, solid. I am overcome with gratitude. And we, with all of you loving and supportive people out there, will continue on this journey with confidence and hope. Thank you!

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If you’ve ever been through a completely insane experience, an event that turned your life completely upside down, you can probably appreciate the value of a morbid sense of humor in getting through the experience. I know we have.

Halloween last year was only a couple of weeks after Jenna’s month-long hospital stay. As my husband prepared to take the kids trick-or-treating I said, “It looks like Jenna’s dressed up as a cancer kid this year and her costume only cost us $60,000.” We both broke into peels of laughter, laughing so hard tears ran down our cheeks. We hadn’t laughed so hard in months. (Little did we know it had actually cost twice that.) As I write this, I question my sharing it because when we told others about this in later weeks, we received many unexpected reactions ranging from contempt to pity. I’m still not sure it’s a good idea. But even as I read this to my husband we are both laughing about it again.

During Jenna’s long hospital stay my husband one day mistakenly told me he’d join me “at the hotel by 8.” Hotel?! Are you kidding me?… But, then it was funny and we went with it. When Jenna was admitted for hospital stays we’d ask for a room with an ocean view. We joked about the “hotel” amenities – clean linens every day (or more), room service, housekeeping, restaurant in the lobby with some of the best salmon we’ve ever had (for only $5!), etc. It made me laugh every time.

Recently we were joking about the family member decals that people put on their rear car windows, so popular here in Utah. We were talking about how Jenna’s feeding tube and pole it’s attached to at home are like an extension of her and had an idea for our own family member decal. Here was his idea…

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And so it is this morbid sense of humor that was the inspiration for my next pillow in the 52 Pillows Project.

While Jenna’s treatment has involved a lot of blood, as in blood draws for labs and cultures, we haven’t had to deal with a lot of bleeding, aside from applying a band-aid after said blood draws. I can’t tell you how I relieved I am about this. But for this next pillow for some reason I couldn’t help thinking about blood and bleeding as the theme. We are inundated by medical supplies now, a whole closet is filled with everything from medical food (formula) to alcohol prep swabs to gauze sponges (which we use for diaper wipes) to barrier paste to feeding bags and more. An eighth of my kitchen counter space is devoted to medications and syringes. Very little of her supplies though have to do with bleeding.

While morbid, this week’s pillow is actually an expression of humor. I have thought about it for weeks and trying to shun the idea because of its morbidity. How is this creative? I asked myself. It’s icky and who would want to rest their head on a “bloody” pillow? Aah, but practicality is not the point of this project. Creativity is. And taking a bunch of medical supplies and making them into a pillow is pretty creative (and kind of funny), or so my husband tells me. With that said, here’s this week’s pillow….

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I really hope the home care supplier doesn’t see this so I don’t get lectured again on doing my part to keep healthcare costs down. Most of the supplies I used were leftovers we don’t need anymore or things we would throw in the garbage anyway.

(Oh, one last thing. We do not mean ANY disrespect to other families and children going through a cancer/chemotherapy experience. We’ve been there and done that and are still doing that with our daughter and are so aware of how difficult and heartbreaking and sickening it all is.)

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After months of intense chemotherapy and frequent hospital stays, things are calming down somewhat and Jenna is stable. Here’s a glimpse of what our “new normal” looks like, Sesame Street style…  = )

A. Albumin infusions every month or so.

B. Blood drawn weekly, sometimes even bi-weekly, instead of twice a week.

C. Giving Cyclophosphamide chemo at home each day gives me the creeps.

D. We have to don special (purple) gloves to change Jenna’s diapers and dispose of them in chemo waste containers.

E. Only one emergency room visit since March and we were able to go home after a few hours! EEEEE!

F. Fluid restriction diet is no fun.

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G. Jenna’s hair, eyebrows and eyelashes are growing and growing.

H. We’re getting out of the house more and Jenna is much happier.

I. Rebuilding Jenna’s immune system.

J. Jenna is just about 31″ tall. Judging by this, she is growing again.

K. Rekindling family relationships, friendships, hobbies and business.

L. Spending more time with the Liver doctors.

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M. Many medicines to give each day and night, but no more at midnight.

N. No longer neutropenic.

O. Jenna loves to play outside.

P. Prednisone “pulses” every 3 weeks wreak havoc.

Q. Quieter nights.

R. Doctors are 95% sure LCH is in remission. (See X)

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S. We sterilize stews of syringes.

T. Taking life a day at a time.

U. Our home “facility” is understaffed and small staff underpaid (haha). A personal chef would be useful.

V. Hospital visits are much fewer – only one day every week or so!

W. White blood cells still waning.

X. Jenna’s biopsies being tested for an LCH mutation. (Not an X-Men type of mutation.)

Y. About a year of chemotherapy left.

Z. Enjoying a few more zzzzzzzzzzzzzzs

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ABCs aside, it’s been surprisingly challenging to go from a sort of DEFCON 1 position, on full-alert 24/7 for months and months, to somewhere between DEFCON 3 and 4, still on alert with some peace, and I have finally unpacked my suitcase. We’ve gone from a long period of being in complete survival mode, living in the “cancer world”, to…… what?… We’re still trying to figure it out.

The hardest thing about finding a new normal is reintegrating with people. Even though Jenna is stable, my life still revolves around her care, her medications, tube feedings and doctor visits. And she is presumably on the path to a liver transplant. This is far from over.

So what do I talk about when I’m with “regular” people? This is my life, and, I just don’t feel like myself anymore. This journey has changed me and I’m not quite clear who I am now or how to relate to people naturally anymore. I feel lost, much like I did after my son was born, having gone through that amazing/traumatic experience of giving birth to him only to find I needed to find a new place for myself on the other side. A couple of moms I’ve met through the hospital said moving and starting over was the best way for them to find their new normal, but I don’t think that would work for me. I need to have something familiar, even if it’s the view out my windows.

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On the bright side, Jenna’s not neutropenic anymore so we can safely get out more. It’s a challenge to coordinate everything with her feeding tube and timing her medications just right, and I’m often overwhelmed by weariness, but we do get out. We go for family bike rides, we eat popsicles on the front porch, we visit the library where Jenna toddles about screeching with delight, we walk in the rain. Sometimes we go to community events. We even go grocery shopping on days when it’s busy and let Jenna sit in the cart! I know… daring! 

One of the oncologists was heard to have said — We saved your child’s life so she can live…. We’re not really doing much, but we are living life again and it sure is nice.

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