The week of the NG tube

We've been inpatient at the hospital six times in the last month. Last Thursday we went in for a fever, discharged Saturday night and readmitted by Monday afternoon. She wasn't allowed food until Wednesday, and even then it was chicken broth and jello only. Thursday her Thanksgiving feast was made of super-soft foods such as Talapia, chicken soup and jello in her hospital room. But you've never seen a child so thrilled with food.

This week was shaped by lack of real food. Grace chose her cartoons and movies based on if they showed food or not...and if food was presented, off the TV went. She was hooked up to a suction NG tube, so she spent most of this week coloring in bed and telling me how hungry she was.

I think I've been worn down just from the lack of sleep. The night normally looks like:

8:30pm Grace fights taking her meds. Finally does and goes to sleep
9:00 I resolve to go to bed early
9:30 Cleaning lady comes in and takes out the trash
11:00pm Grace has to go to the bathroom because they have her pumped with fluids and needs help
12:00am Grace gets a midnight does of oral medicine which she fights for 1/2 hour
3:00am Grace has to use the bathroom again
4:00 Nurse assistant comes to take her blood pressure and temperature
5:00am Nurse assistant comes to empty urine out of bathroom
6:00am Grace gets her morning dose of oral meds. Declares she can't go back to sleep
6:30am We're up and Grace is watching cartoons while we wait for her jello to arrive

After a week of this I just shut down...but in reality it's been more like a month of this with a few days off here and there. I'm so thankful that Chad offered to cover for me since he had time off work. I came home yesterday and played with Luke and had Thanksgiving with my family and went to bed early and took a nap today. I feel like a new mom.

It's probably just the lack of sleep that had me very emotional this week, but I think there's more to it. Thanksgiving made it glaringly obvious that our family was separated and because it's flu season, Luke couldn't even come up to her room to hug her. That was really hard on me.

Also I've felt very responsible for Grace's constipation. The doctors kept telling me to do this, and do that to help her and I assumed that I had failed since she kept getting hospitalized. We had a really nice Doctor who explained to me that GI Neuropathy isn't something that I could have fixed no matter how hard I tried and that it wasn't a failure on my part. I burst into tears and she hugged me for a while.

Later that day Grace had art therapy and her therapist talked to me about Grace maybe not expressing her needs or wants. Normally I'd say this isn't common but it worried me. I have such a hard time expressing my needs or voicing my pain. I'm always fighting to be positive and sometimes I don't allow myself to hurt. I worry that I'm forcing this on Grace too.

The therapist suggested that I also work on feeling more while at the hospital. But I can't. When I'm there, I'm "MOM."  I have to be strong because I don't want Grace to have to be the strong one. And even if I were to be scared or sad or angry or any other emotion, it doesn't change anything. Even if I'm mad enough to swear that I have to pin my daughter down for yet another NG tube, I have to still pin her down. I felt furious that I told her if she worked hard to take her laxatives she wouldn't have to do this again, but it didn't stop it. I felt like I had betrayed her. But being angry or sad or scared doesn't stop it. I still had to hold down my screaming daughter while hoping that lots of hugs after might somehow compensate.

Sometimes I want to be forcefully happy because it's the only thing I can actually control and also I want to piss off the "bad." Sometimes I want to be happy because life is continually hard lately and I'm scared I'm going to be a continually sad or angry person. Sometimes I'm scared to sad will take me over and I won't be able to escape it. Sometimes I'm scared being sad will make people not want to be around me. And most of all, I don't want Grace to see me sad and think that she's making me sad.

So I bottle it up, at least while we're in the hospital. The problem was I was so tired that it kept leaking out. And though I fight for faith in times like this, I remember all the ways He has protected us and brought us this far.

Now that I'm home the pain is still here, but bearable again. And now that I can go into my own room at night I can deal with the pain without worrying I'll wake Grace up. With some of the tears gone there's starting to be room for genuine happiness again. Luke has been providing laughs in excess. Grace's NG tube is out. That makes me very happy. Grace and Chad are on their way home makes me extremely happy. The uncertainty is hard, but I'm glad the doctors are getting better at figuring her out. I know that we can be back in the hospital again at any time. Day by day I have to trust God to get us through it.

And I think happy will be my natural state again soon and fear and sadness will be the exception.

P.S. There is a study at CHLA that is trying to see why the chemo Vincristine (the very one that started all this trouble for Grace) effects some children more than others. They have a theory that it might have a harder time exiting the body for some kids, thus making their exposure to the drug much higher. They think this may have been true with Grace as she's had SO many reactions and side effects including not being able to walk, the constipation, GI neuorpathy and possibly even the mucisatis. These kinds of studies could make a HUGE difference for children getting chemo. These are the studies that only happen with mostly private funding. If you're looking to donate to GivingTuesday, please consider childhood cancer research. Thanks.

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

Partial Remission

Remission. Its something I just breathe in and out, over and over. Of course, it's partial remission and we've yet to get her MRD (see definition below), we should have that by Wednesday. Mostly her remission means that her cancer is reacting to the chemo which is what we wanted to see. Especially because she's Ph(+), her remission is a great sign. 

Next we switch up the medicines. She gets a few days off chemo for good behavior. Friday we start new meds that will have the opposite effects of her meds right now. Her steroids have caused her to be amazingly hungry. Now they will make her extremely nauseous, with vomiting. We're to expect that to be her new normal for one month. She'll lose all the weight she put on, and probably then some. And instead of loving food, she'll probably become extremely picky and refuse most food outright. The chemo will also likely finish off what's left of her peach fuzz hair.

On Monday she'll be getting a port, which we've nicknamed "the bumble bee," because it looks like it has yellow wings and a stinger. This will replace her picc line, which is great, as her picc is already causing some issues. She'll be able to bathe, swim and keep her arm free so we're pretty excited. Actually, I'm pretty excited. She's really worried about it. 

Thank you all again for your prayers and love and cheers for Grace. We value your friendship and support more than you'll know.

Minimal residual disease (MRD) is the name given to small numbers of leukaemic cells that remain in the patient during treatment, or after treatment when the patient is inremission (no symptoms or signs of disease). It is the major cause of relapse in cancer and leukaemia. Up until a decade ago,^[when?] none of the tests used to assess or detect cancer were sensitive enough to detect MRD. Now, however, very sensitive molecular biology tests are available – based on DNA, RNA or proteins – and these can measure minute levels of cancer cells in tissue samples, sometimes as low as one cancer cell in a million normal cells.

In cancer treatment, particularly leukaemia, MRD testing has several important roles: determining whether treatment has eradicated the cancer or whether traces remain, comparing the efficacy of different treatments, monitoring patient remission status and recurrence of the leukaemia or cancer and choosing the treatment that will best meet those needs (personalization of treatment).

Wild Ride

Today has gone surprisingly well. Grace hates having her picc line dressing changed, but she did a great job even though she was very unhappy about it. Her numbers are still low, but higher than last week which made the doctor feel optimistic that the chemo is probably working. I was feeling really up. Grace has been talking today, smiling and making jokes. So far no nausea from the chemo, but last week it didn't hit until midnight, so we'll see how today ends.

Today I joined a Facebook support group for ALL. Within ten minutes I was connected to two other moms whose children also had Ph(+). One of them commented that it's been a year for them since diagnosis and a "wild ride." And in that small statement my courage collapsed.

I feel like I live in two dimensions. The real and the imagined real. Sometimes, like today, I feel unfamiliar even in my own house. It feels as if I'm shocked out of a dream and I don't know where I am for a moment. In my imagined real, my plans and schedules and disinfectant wipes are enough to cure Grace. Today I was shocked out of it by the other mom's statement and I realized my plans have no power. My schedules, while helpful, can't cure, and my wipes don't even impress Grace's doctor, compared to her medicines. And suddenly I'm back in that unfamiliar place called Leukemia. And it's real. Suddenly very real.

Sometimes I feel I don't even know how to pray for Grace. Obviously I want God to heal her completely and that this will be one day an amazing story. But I also know that not all of God's stories end that way. I want to pray for God's will to be done, but I'm so afraid to that I worry that I'm avoiding the topic too often.

Sometimes I'm so filled with peace it seems to be my only reality. When I'm afraid like today, it seems like the peace was only a hopeful dream and my fear is the only true reality. So then I turn back to God's word, to find his reality. It calms me again and helps me to breathe. This Psalm is just right for tonight.

Psalm 116

1 I love the Lord because he hears my voice
    and my prayer for mercy.
2 Because he bends down to listen,
    I will pray as long as I have breath!
3 Death wrapped its ropes around me;
    the terrors of the grave[a] overtook me.
    I saw only trouble and sorrow.
4 Then I called on the name of the Lord:
    “Please, Lord, save me!”
5 How kind the Lord is! How good he is!
    So merciful, this God of ours!
6 The Lord protects those of childlike faith;
    I was facing death, and he saved me.
7 Let my soul be at rest again,
    for the Lord has been good to me.
8 He has saved me from death,
    my eyes from tears,
    my feet from stumbling.
9 And so I walk in the Lord’s presence
    as I live here on earth!
10 I believed in you, so I said,
    “I am deeply troubled, Lord.”
11 In my anxiety I cried out to you,
    “These people are all liars!”
12 What can I offer the Lord
    for all he has done for me?
13 I will lift up the cup of salvation
    and praise the Lord’s name for saving me.
14 I will keep my promises to the Lord
    in the presence of all his people.

15 The Lord cares deeply
    when his loved ones die.
16 O Lord, I am your servant;
    yes, I am your servant, born into your household;
    you have freed me from my chains.
17 I will offer you a sacrifice of thanksgiving
    and call on the name of the Lord.
18 I will fulfill my vows to the Lord
    in the presence of all his people—
19 in the house of the Lord
    in the heart of Jerusalem.

Praise the Lord!

The Haircut

Last night Chad pulled up the Hip Hats website that CHLA had recommended to us. To be honest I had forgotten about it. I had assumed there was no way on Earth that Grace would voluntarily cut her hair before it fell out. But I had noticed the hair brush full of hair for two days. We really liked the hair halo idea as it uses her own hair.

At her age, I'm not sure how she'd field the questions from other kids in passing about her bald head. I think a wig for public outings might make her more comfortable. This morning after showing her another handful of loose hair we showed her the website and asked her what she thought. I was floored when she said she'd do it.

Later today she told me she was pulling more of her hair out. She told me she thought that if she lost all of her hair she'd feel better. Again she surprised me with how well she took the news that her hair loss means the chemo is working, not that it will necessarily make her feel better.

She voluntarily took Ella along to Bambino's Kid Hair Saloon. She was amazing. I had stored up so many anxieties for this moment and she took it like it was the most natural thing in the world. No wonder, we had lots of people praying for this. And after it was gone, my brave, beautiful was still smiling. I knew she'd be beautiful without her hair. And she is.

Angry at God

(Grace painted this for me yesterday.)

Last night was a prayer and worship service at our church, my first outing since Grace's diagnosis. I sat the entire time with two ladies from my church on each side, each with a hand on my back. They didn't say much and that is exactly what I needed.

I asked God to clear my head and all the confusion. More than anything I just wanted a word from him, to hear his voice, to feel his comfort. I was completely mixed on being there. Half of me wanted to run away and half of me refused to leave until I felt him. Luckily the refusing me won.

As I was praying, and I have no idea what I was praying, God showed me that I was carrying a burden I wasn't meant to. (Teri Reisser, my therapist, you'll be happy if/when you read this). I am by nature a people pleaser, which is why I was in therapy before Grace got sick. God showed me that I wanted good to come out of Grace being sick, which in of itself is not a bad thing. I've desired that people would be changed when they see how God is working in our lives, but the problem was that I had taken the emotional responsibility of that happening.

Also God showed me that I was not only trying to "save the world" but that I was trying to compensate for him, as if he made a mistake by letting this happen. I was trying to cover his mistake with my actions and feelings, pretending that this was really all ok with me because it was for his glory. He let me know last night that it was ok to be angry at him. And it all came out.

I am so angry at God. That he would let this happen to us, to Grace. That he would allow his people to suffer. And as we suffer I feel the world suffer. I feel connected to the sick and broken in a way I've never before, it's no longer "them" and "me."And I am angry at God for all of it. And I feel so connected to Jesus because he has allowed me to be real with him. He's made it safe for me to be angry at him and when my pretending went away, the real me was filled with his peace and presence in the way I've been longing for. And I'm still broken. And I'm still angry. And I feel peace for that.

If God brings good out of this, it will be his miracle, not mine. He showed me that my job for now is to take care of my family and keep my eyes on Him only. If others are helped or encouraged or even find salvation, it will because he did it. Not me. Only other people pleasers will be able to understand the relief that brought me and the huge weight  that has come off my shoulders.

And I can be myself around Jesus, even my worst self. What a relief. All last night during worship my repetitive hymn was, "Thank you that I can be angry at you and still be loved by you."

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."

Grace's clinical trial run down

Tomorrow we go back to the hospital for Grace to get her chemo and also to start the new clinical trial for her Ph(+) inhibitor, Dasatinib. For those of you wondering, we feel strongly that this new medicine will really help Grace, and here's a rundown on it.

Essentially Grace has a genetic mutation on two of her chromosomes within her cancer cells. They've switched places on her 8 and 22 chromosome (normally it's 9 and 22, more on this later). This translocation means that her cancer cells replicate like a kamikaze explosion, putting her into the high-risk category. It means that chemotherapy alone (even aggressive chemo) can't keep up against her genetic mutation. Back in the day, before the original inhibitor called Imatinib was created, cancer patients with this mutation were given a 20% chance of remission. After it's creation, the cure rate shot up to 80%.

The only problem with Imatinib is that patients can become immune to it. So they came up with a second generation of the medicine called Dasatinib, which is essentially the same drug as the first but will keep patients from becoming immune, therefore making cure rates even better. The FDA has not approved this drug yet, but trials on adults have been very promising. We thank God that Grace got accepted into the trial so she can have access to this medicine.

We've had a lot of recommendations for alternative therapies for Grace from friends. In order for Grace to stay in the trial we will have to limit other methods used. We're juicing and eating healthy but it's not likely that we'll be able to use herbal remedies or essential oils or food as medicine alternatives. We appreciate all the research our friends have done on these for us, but we do feel God leading us down another path for now. If that changes we'll be sure to reach out to you.

We'll see how Grace does with the meds tomorrow. Her regular chemo is starting to show it's bad side. Typical with the steroids she's taking as part of her regimen, she's swelling in her tummy and face. She's ALWAYS hungry, asking for salami, Pho soup and scrambled eggs all day long. No kidding, she eats more than me. I think that it's stretching out her tummy too quickly so she complains of her stomach hurting all day and is nauseous on top of that. She tires easily, so running, dancing, bikes and scooters are all out. She also gets legitimate mood swings and her sense of smell is heightened. Pretty much like being pregnant but without that "magical glow."

Please keep us in prayer for tomorrow, as I know you all do. We so appreciate all your love and concern and prayers. Know too, that we'll soon be doing a blood drive in honor of Grace in early March. As Grace has needed five blood transfusions in the last two weeks, we are thankful and in an eternal debt to blood and platelet donors.

When people are the miracles

I can always tell when people have been praying for us. The last post was after such a crummy, hard day. And I know it got people praying because the next day was significantly better. The prayers have meant so much to us. And people have become miracles to us. We've been blessed so much recently.

We have several meals in the freezer and fridge with the promise of more through March. My family and in-laws have been caring for Luke and helping Grace transition home, and cleaning our house for us and doing our laundry.

We've had people that we love, people we know of, and friends of people we know of, take care of us. We've been given tea and snacks and pho, handmade blankets, hats, and picc covers, toys and activity kits, hair clips and cute towels, fancy pjs and princess socks, gift cards and checks.

The love and warmth and generosity shown towards us has been unbelievable. Really. I opened unexpected cards today with gifts in them and stood there with my jaw on the floor. And what do you say in moments like that? Thanks doesn't seem to do it but it's all I have. I want to cry and laugh and hug but mostly I just stand there with my mouth open.

We also wanted to add for anyone who has been so generous to help us with medical bills- we are opening an account for this money. We hereby promise to only use it for Grace's medical bills and associated costs. Should there be any excess, we will be donating it to a children's cancer non-profit or CHLA. Just so you know.

Here are a few more highlights of how we've been cared for:

I thought you'd all love this. This eight-year old is the son of my brother-in-law's friend. He's never even met Grace but he wanted to do something to help. He had a lemon"aide" stand (in the rain) at a park and raised $118 for Grace. (video coming ASAP).

The Elizabeth Macdonald Foundation came and gave Grace a free trim to help her adjust to the concept of losing hair. Pamela Hobby and Ivan the hairstylist were the ones who helped talk Grace through the trim. I think Pamela is probably the prettiest woman I've ever seen in real life. She told Grace how she lost her hair from chemotherapy as a child.

Grace was also visited by the Dodgers (more photos on their blog) at CHLA's child life support playroom. Here she is telling Matthew Kemp that she wants to be a soccer player when she grows up. He totally went with it and told her he likes soccer too. What nice men they all were.

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.