New to Childhood Cancer Tips: Helpful items

I thought I'd assemble a list of the things I wish I knew we needed straight away when Grace was first diagnosed. At least for our family, these things worked well for us.

List of Helpful Items:

• Oversized hand sanitizers, the alcohol type only, one in every room and near every door
• Signs around the house reminding me to sanitize and wash hands. Also in the car
• Waterproof mattress protector sheets, two or more. I did Grace's bed potty-training style. First the waterproof sheet, then a fitted sheet. Then another waterproof sheet, then another fitted mattress. That way if she vomited all over her bed in the middle of the night, I could peel off one sheet and have a dry, clean sheet underneath. You may also want to get a waterproof pillow protector to under the pillowcase. We also had extra pillows, blankets, and pjs at the ready.
• A fold out mattress, the camping type, for me to sleep on her floor when needed
• A baby monitor in her bedroom and one in the bathroom. The bedroom is obvious, but sometimes in the night Grace would be too weak to climb off the potty by herself and would get stuck. The bathroom monitor made it easier to make sure she got help if needed in the night. We got the really cheap ones
• Flushable wipes and "butt paste." The chemo can burn on the way out, so the butt paste helped with that and the flushable wipes helped make sure each bottom wiping was thorough. Costco and Target both sell their own brand of flushable and/or toddler wipes
• Pull-Ups. Even though Grace is potty trained, when we had overnight stays at the hospital she was getting fluids 24/7. Sometimes she couldn't get to the potty quick enough in the night. We had her wear them at night just for extra protection
• Pre-packed suitcase, kept in the car for emergency trips to the hospital
• A backpack for mom. I kept mine loaded with laptop, books, toys and snacks for hospital days
• A good supply of craft kits, coloring books, a snuggles blanket and movies for bringing on hospital day
• Lunchbox packed with food for hospital days. When Grace was on steroids her appetite was amazing and we didn't always have quick access to food when at the hospital
• Dog-poop bags in dispenser. These make great barf-bags and can clip onto the backpack for quick access. 
• Also mini hand sanitizer that clip onto the backpack
• Extra phone chargers. I had an extra to keep in my backpack and one for the car. Also extra chargers for the laptop/ipad
• A umbrella stroller, for kids under 50lbs. They fold to be very compact and are great for when the kids are weak from steroids. Overall our doctor encouraged us to let Grace walk, but for even across the hospital, it was too far for her
• A notebook. Each week we printed out a list of her meds for each day (a morning list and evening list) so we could cross them off and note when, how much, pain experienced, etc. It kept life much more manageable and the notes were really helpful when talking with her doctor on how the week went
• Clorox wipes and Lysol spray
• A "Seal-Tight Cast Guard" for the bathtub. This one works wonders! It has a rubber insert for the arm that worked better than anything else we tried. My mom found it at a medical supply store for $20 but it's also available on Amazon. Now that Grace is getting a port tomorrow, we won't need ours anymore
• PICC covers, made from girly leg warmers
• Separate toothbrush holder so Grace's toothbrush doesn't accidentally touch her brother's. We also bought a few extras, in case one of hers fell on the ground, we'd have a clean one ready. Dirty toothbrushes were sanitized in the dishwasher
• Extra bath towels. I was paranoid about bacteria growing on her damp towel so I bought enough to have a clean, dry towel for every day between washes

New to Childhood Cancer Tips: How Others Can Help

When we were first diagnosed everyone and their mom (literally) asked how they could help us. We were so overwhelmed with Grace's new diagnose we really had no idea. We didn't know what we needed at the moment, what we would need, or how often we'd need it. So for the family new to cancer, I thought I'd list some things I wish I had thought of then. This page from City of Hope on how Others Can Help was also very helpful.

We found it really hard to accept help at first. It's a painful reminder every time someone helps that your child having cancer is not a dream and its tempting to try to pretend it isn't happening and that you don't need help. But without help you won't make it. Having more help than I really even need has allowed me to play with my kids more, and that helps me bring the pendulum of normalcy back in their favor. Plus there's a lot more to do than I expected beyond the time spent at the hospital. I clean more, sanitize more, do laundry more. I avoid as much as possible going to high-germ places like Target and drug stores where sick people flock to. I have less time to grocery shop or do things like oil changes or get haircuts.

As far as watching Grace's brother, we've relied mostly on family. We've had tons of offers for people to babysit him, but he's two. So we try to keep him in familiar environments with familiar people as much as possible. All the same, he needs to get out too! So we sometimes ask that people pick him up from my mom's house and take him to the park for an hour. And to come over and play with him for a bit so I can get chores done while he still gets play time. As hard as cancer is on Grace, it's a huge strain on her brother too, and his needs are as legitimate as hers.

Overall I feel like people have been miracles in our lives. They've blessed us in so many ways. I feel like the reason we're still in one piece right now is directly due to all the ways people have been loving us and blessing us.

Here's my list of how others can help:

• Giftcards to Costco, grocery store and favorite restaurants 
• A few frozen meals are great to have handy 
• House cleaning and/or funds to hire a housekeeper
• Pet cleaning and care such as bathing cat, cleaning dog poop, feeding fish, etc.
• Itunes and Amazon giftcards to download movies
• Coloring books and travel-type craft kits
• As far as toys go, Grace received tons and Luke, her brother, some. It's really great when every kid in your family gets a gift when your CC (cancer child) is sick, because it's a hard toll on the siblings as well. I promise, they need some cheering up too.
• Gas cards, parking cash
• Target and grocery store runs. I found it best if someone could schedule these weekly, or to just call when they're on their way to the store 
• Lawn and pool maintenance
• Car maintenance and filling up car with gas
• Help with laundry
• Funds to help purchase an ipad and/or laptop
• Blood drive organizer
• Watching siblings or taking them out to the park and other "outside" activities
• Designated contact person who updates facebook posts, calls the great-Grandmas without Internet skills and generally fields calls so we don't have to
• Meals set up and scheduled. MealTrain worked really well for us, and my sister-in-law set it up and remained the contact person for it. We realized every-other day was more than sufficient as people tended to bring tons of food each night. We asked people to text us the day they were due to bring food so we could confirm we'd be home to receive it
• Ask someone to help set up a fundraising option, but be wary of fundraising sites online. I found a lot of them took up to 10% of donations, one even took 100%, so be sure you know what you're singing up for. We set up a fund through our church's benevolence fund. Then people who donated could even get a tax write-off and we weren't taxed either. Another option is for people to pay your bills directly, which also shelters people from gift taxes, but talk to your tax person to see what's really best
• Design help for "Team Grace" logo, shirts and help to make printed postcards from Costco that have Grace's photo and a "thanks for helping us" message that can be handed out easily 
• Someone to research grants, and cancer society and support groups for you
• A designated address to receive cards and gifts, especially from strangers. We used our church address and phone number
• A designated team of neighbors that you can call in emergency to watch siblings, even in the middle of the night, if you should have to rush your CC to the hospital

I've also assembled a list of items you will probably need here

New to Childhood Cancer Tips: Daniel Tiger's Neighborhood

I thought if other parents of cancer kids found this blog, that perhaps they'd appreciate some tips from us having been there. So now and then you'll find these types of entries.

Tip: Get PBS' Daniel Tiger's Neighborhood "Visit to the Doctor," and "Daniel Gets a Shot"downloaded onto your smart phone, ipad or laptop. I'd recommend having it readily available. Also, watch it with your child in advance, and be prepared to sing the songs out loud with your kids during the shot/treatment, no matter how off-key you sing. I really like this sweet little show, and I'd recommend it for kids age two to six.

Keeping Afloat

Today started out so hard. Grace was up at midnight vomiting. She was so miserable. It's in moments like these that my faith starts to falter and I ask, "why would God allow this?" I started to think of all the suffering people in the world, of all the parents who lose their children to simple but serious maladies like diarrhea and malnutrition. Then I remeber that we serve a God who goes through our suffering with us, and I'm certain that he feels our pain in a deeper and more real way than anything we will ever understand. It's true he doesn't magically rescue us out of all of our suffering, but he will not leave us alone in the fight. His presence becomes our refuge.

This is the video that Chad loves that he watches when we start to feel abandoned.

(I personally think his whispering is a little creepy sounding, but overall I give it a two thumbs up.)

The good news is after Grace took another dose of nausea medicine this morning she didn't immediately vomit it up again and it actually started to help her. She took a bath and enjoyed it. Grandma came over so I could do some shopping and Grace and Luke happily watched a movie and munched goldfish with Grandma.

After lunch, Noni (Grandma2) and Auntie Bren and Uncle Will and "The Cousins" came to play. Grace was feeling so well she got up and actually played for the first time in two days. She has a new love for food and cooking. I love that she's seeking out new things to do and be excited about instead of be sad about what she can't do anymore. She's become my number one helper and cooker and cooked in her play kitchen and with Noni all afternoon.

She was so excited for her giant card from her preschool.  Our friend who dropped off dinner tonight also packed Grace a coveted Bento box lunch for tomorrow with rice pandas and quail eggs. Amazing. Grace has been talking about her little friend's rice pandas for months. Now I know why.

She fell asleep early on the couch this evening before dinner, ate a little, brushed her teeth and eagerly climbed into bed. Her prayer tonights was, "Dear God, please help me feel better quickly. Please help my medicine heal me like ninjas fighting cancer. Amen."

Can't wrap my brain around it

This is Grace on her 4th birthday this last January.

Chad and I were both talking last night that we remember the morning after we were married. We woke up, looked at each other and both said, "I'm still me....what happened?" We were both absolutely expecting to be transformed into a "Married Person," and we were so surprised to find ourselves still ourselves...plus married.

That's how leukemia felt until today. It was this vague, general concept that was more a theory than fact. It is a layer on top of our lives, but we're still so ourselves that it's startling at times. I had no way to grasp it. We still have so many unknowns and really, it didn't seem to be effecting Grace much. Yes, she was in the hospital but she was still our playful, fun little girl. I kept expecting the doctors to say, "We made a mistake. Grace is totally fine, go home to your lives."

Today was different. I saw cancer today, I felt it. Our active girl was so tired she was on the couch most of the day. She didn't want to dance or run from zombie mommy or play hide and seek.

Today I saw the fatigue in her eyes and it hurt me. My heart had a cold, achy, emptiness. Thankfully my mother-in-law came over today and I ran to the store just so I could be by myself. I sat in the locked car and cried there for some time.

A friend called me tonight saying, "it isn't fair." And it's not. Those of you who know us we didn't do anything to deserve this. Later Chad and I had some worship time and sang the song, "Lord I need you" and no words rang from heaven. But as I focused on the words I started to remember that he made his promise in blood when He said He would "never leave or forsake us." His cross is the promise. In all my fear and anger and despair, the cross is still there. I started to say things I know to be true, that He is close to the brokenhearted. And what Satan has come to steal, kill and destroy, He has come to give life and life abundantly. That He has plans to prosper us and not to harm us, to give us hope and a future. Slowly the ache melted and I felt a warmth in me. Over the years I have come to recognize that warmth and I know the feeling of my Jesus's hand on my heart.

Overall it was a very hard day for me. And God has not promised me that He will not take Grace from us. But He has promised us himself. That He will walk this path with us and he will carry us and not let us go. Please keep us in prayer that we will stay strong enough to keep standing in faith...but even should we fall, I know we can fall on His grace.

(The kids really enjoyed a bike ride today. I think the bike will be our key to the outdoor world)

First Day Home

Today was our first day back...and it was hard, I'm not going to lie. It was so great to have my family all in one place but I think (I know) that each kid has been getting the only-child-with-special-gloves treatment the last week and they were both shocked and angry to find out mommy loves them both best. I think it'll take a day or two to return to regular. I hope.

Today was also a day of sorting and organizing. I made a kit for everything. My backpack kit (to be with me at all times) includes a thermometer to check Grace's temperature at any time, clamps should her picc line break, gauze and tape for the same reason and a mask. My medicine kit includes all of Grace's daily meds put into her dispenser...Oh crap....

I forgot to give Grace her nighttime dose. Thank God I was writing that or I would have forgotten. I've also forgotten to wash my hands so many times today- when we come in, when I touch her medicine, if any of us touch our eyes or nose or mouth.

Anyhow the third kit has Grace's picc supplies set up into daily baggies to help me keep that organized. I set up hand washing and hand sanitizing stations all around the house with reminders on every door. I called people to set up emergency babysitters for Luke since our roommate is back in India for a month. I packed overnight bags for each of us in case we have to rush off to the hospital again. I put reminders on my phone, calender and on the fridge. I have a thank you list, a Target-run list and a journal of every detail of Grace's daily life from what she ate to pain she complained of. My mother-in-law bleached every toy she could, she even disinfected the outside bikes and toys. My parents bought us a new HEPA filter vacuum and we bought an air purifier and a juicer, just in case the claims of the magic of beet and carrot juice are true.

In the end, it's possible that none of our preventive measures will really matter that much. The doctor told us that it's the bacteria in Grace's body that is the real enemy. According to my understanding of it, the chemo will lower her white blood cells. This will likely cause ulcers in her mouth, stomach and elsewhere. These ulcers will allow bacteria that exists in her body to enter her blood stream. Apparently, that's where the real danger lurks as her white blood cells are also her fighting agents and because they won't exist, there won't be much of a fight without serious antibiotics. But keeping germs and viruses away will keep her body focused on what it needs to fight the most, the cancer. (Hopefully all my doctor friends aren't cringing at my best-understanding synopsis.)

Needless to say, I'm beat. I hoping that having all these procedures in place will help the next days go smoother and my nervousness will go down. I don't really care in the end if it helps or not. To not do it is not an options for us. But I agree with my mom as I was going over the paperwork listing out all the symptoms to watch for and she said, "can we go back to the hospital now?"

Also too, for all of you who have signed Grace's change.org petition to ask Mattel for more "Ella" Chemotherapy barbies...thank you. There's not much I can do to make Grace's cancer go away but seeing everyone sign that has really lifted my spirits and helped me to not feel so helpless.

A Strange Bubble

We're praying that we get to go home tomorrow. I'm so excited and terrified at the same time. I can't wait to be home with Luke and Grace in the same room. I've been so ready to have my family all back together, I miss Luke every day...that's been very hard for me. I'm looking forward to not being woken by nurses six times a night, and using my own shampoos and sleeping in my own bed. I'm looking forward to meals that I'm used to and smells that I actually enjoy instead of disinfectants.

I'm terrified too. I wish we could pack one of these nurses into our suitcase (zuitcase, Grace calls them) and smuggle her home. It's so scary to think that Grace's primary medical care will now be in our own untrained hands.We have to watch for small symptoms, like a shiver when flushing her picc line every morning. That shiver could mean that bacteria was flushed into her heart and we'd be on our way to the ER minutes after. Or a fever could mean we'd be back in the hospital for another week. We'll need to keep tabs on how much she eats, drinks, poops and how she takes her medicine. We'll need to limit her germ exposure while still trying to provide a "normal" life for her.

I think I'm also scared of the emotional impact it'll have when we get home. Strange enough...I like it here. I like that Grace has nurses who know exactly what to do. Doctors who can get her medicine to feel better in minutes. The hospital is bright and colorful and in it's way it has been a happy bubble. Now we'll be home and we'll have to face the reality that our new reality means Grace has leukemia. I know it seems like being here would be the biggest impact, but coming home and her still having it is much more real and much more scary.

But being home and then having to come back to the hospital might be harder still.

Here it's been so busy. We've spent the hours getting tests done, talking to nurses, taking medicine, visiting with family, entertaining Grace, talking to doctors, and holding Grace when she feels sick. Writing these last few nights has been my only time to process and I don't feel I can fully because there's nowhere for me to go and cry for as loud and as long as I need. So I don't think I've allowed myself to really let it sink in yet. It's more been do this, do that, keep busy. I know I need to process, I know I'll get that time and space and home, and I also don't want to.

And I've been so blessed by so, so, so many people reaching out to us in love. And I feel terrible that I feel like I shut down a little instead of taking it with arms open. Just to tell our story again and again is painful. Sometimes to share updates hurts because it puts the truth in writing and then we can't take it back. I love the love and yet it makes our situation real, so I find myself hiding from even good friends. I find myself with my fists up emotionally. If I've done that to anyone reading this, please know I plan on it being temporary and I love you still. I hope you can deal with this side of me until I'm a little more functional.

I pray to God that tonight is our last night in this strange bubble, at least for a while. And I pray even more that his presence is what will make our home feel and be safe for Grace. And I thank him so much for this hospital, for all the staff and doctors and nurses and I even thank him for the rich old ladies who left all their money in their wills so this hospital could be built. And I thank him for all the love and support, and for my family, and for my kids. And most of all, for him.