Wednesday, September 10, 2014

A Confession

Today I was really bugged. I was bugged about what I wrote last night. Not that any of it wasn't true, but I think I like to come off more spiritual, peaceful and collected than I actually am, at least not all the time. Truthfully, I have some hard days inside my head. It's not that Chad and I weren't talking about the joys of being used by God yesterday, we did, but it was a small part of my day. And overall yesterday was pretty good anyhow.

Today I took the kids to the beach and I almost had one panic attack and nearly two tearful meltdowns. Overall we had a great time. It's just Grace got a sand rash and at first I couldn't tell if it was a bruise. I first had to decide if it was bruising called petechiae. And as I was trying to wipe off all the sand and make the assessment, I had to prepare myself mentally to pack quickly, leave the beach with two dirty kids and go straight to CHLA for a platelet transfusion.

Thankfully it was just the rash. But then I twice second guessed myself and tried to make sure I hadn't taken Grace to an unsafe environment and that was when I almost broke down crying. Sometimes the thinking is too much for me. I didn't cry and that makes me a strong person or a calloused one. Somedays I can't tell which.

Anyhow, I need to be more truthful for my own sake. Some days are good days. Some days are bad days. I don't want to stretch the truth by exaggerating or by omission because then I cheat myself on experiencing the day for what it was, and if God has each day planned then I need to go through it, body and mind. I'm also working hard to avoid depression, and that for me means being real with myself and allowing myself to fail, and to feel.

Anyhow. I feel much better now that I've made that confession. It's something I'll have to continue to work on. It's good to be positive. And I'm good at it. But being accepted as the real me is something I'm learning to value in my relationships with people and with God.

(the rest of the day at the beach was fantastic. We had such a good time that I didn't even bother to take photos. No time! We found seashells, seven purple urchins and played a ton in the water. It was great!)

Tuesday, September 9, 2014

Playing Hops-pital

Today Grace and I had playtime as Luke was at preschool. She wanted to play mermaids who needed to be in the "hopspital." I really liked that she tucked her mermaid into a hospital bed that inclined, and that she had the mommy mermaid stay with her in bed the whole time. She said the mermaid didn't kick so the mermaid mommy would sleep with her. (As soon as Grace wasn't in pain I started sleeping on the parent pullout bed because she kicks so much. Apparently she misses that.)

She wanted to give her mermaid a special name, so she named her "A-B-C" I tried to convince her to call her "mousey" or even "A-B-C-mouse," but no, the ".com" was required. Grace gave her mermaid a thorough checkup with blood pressure and temperature as well as an xray, blood transfusion and a port access. She was visited by the "art thera-bus," aka art therapist as well as three kitty pet therapists.

Her mermaid stayed in her hospital bed most of the time. She said the mermaid was sad she couldn't go home and see her daddy. She said she missed her sisters (though Grace only has Luke, but only had other girl mermaid characters to play). She said she wanted to go home but she had to stay as long as Grace's longest stay, so the mermaid stayed for seven and a half weeks in her block hospital.

The good news is that the storyline cheered up considerably when the bad guys came. Ursula and Malificent invaded the hospital to try to make all the kids sad and scared. But brave saved the day! She captured the bad guys and tricked them so that their evil plan was thwarted. Then all the kids could be happy and get better and they gave the little mermaid high-fives and big hugs.

Tonight, as Chad and I were talking, we mentioned the satisfaction that comes from being used by God. That when we care for others, help them, pray for them, and love them, that life is full of joy even in our hard circumstance. Not that we're doing much right now, but even sharing smiles at the hospital with other kids and moms goes far there. We've had several opportunities to pray with other moms and Grace has shown several kids how she stays brave when she gets her port access. Chad brought his coworkers donuts today, just to be kind.

Not that any of that is noteworthy, the reason I'm sharing is because it's simple things that we can all do. It's simple ways that God uses us that makes life exciting and worth living. Part of the reason why we're not being drug under from the weight of what's going on is that we see this as something God can use to make our lives purposeful. Grace defeating Ursula to save the other toys may seem just like play, but it's insight to how she's coping with all of this. Grace knows her life is purposeful and that she still sees herself as strong, even when at the hospital.

Anyone who's read my earlier posts know what a struggle it's been for me to accept that. I didn't want to be used God when Grace was diagnosed. I was repulsed at the thought that God would allow this to happen for any reason and I didn't care what good He brought out of it. I still don't believe He caused the cancer, but I accept now that He is able to do good. And as I'm starting to look for ways to be used by God, He is using us (in tiny, tiny ways).

We've also been shaped by the people around us. Chad and I have both been deeply touched by all of our friends and family who have shared our burden. The examples given to us on how to love (meals, cards, finances, people shopping for us, homemade blankets and hats, giving blood, sending Grace and Luke toys, doing housework and gardening, taking care of Luke- the list goes on and on), people have been so generous to us through this time and it has really encouraged us to want to grow. We want to learn more about how to love others.

I feel like life is not all loss for us. That the balance is being swayed into the positive again as we see God working in the lives of those around us, and as we see people reaching into our lives and helping us.

And the happy ending- Grace's mermaid spent a long time in the hospital, but she did a good job taking her medicine and was finally able to go back home.

Friday, September 5, 2014

God isn't a soccer mom

I don't think God is a soccer mom, but I think we want him to be. I met a nurse here who told me that her eighteen year old son lost or broke his iPhone three times last year and she replaced it every time for him. She convinced him to become an engineer at a bigger college, even though he dreamed of being a video game developer and starting at a local school. She seems to be the mom who does his laundry, cooks his favorite meals every night, does all the boring chores herself, buys him an expensive first car. I think one day his wife will hate her. And if his marriage falls apart, perhaps he might come to resent his mom for it.

I think that's what we Americans want God to be for us. A soccer mom. To make all the important decisions, to fix our carelessness, to make our favorite sandwiches while we sit on the couch and play video games.

I've been thinking about Heaven. I wonder if when we get to the pearly gates that we might be shocked if we find that we're still ourselves. That death didn't kill things like anger, unforgiveness, pride, selfishness and that we will have to work through them somehow in heaven. Maybe God won't magically wipe our bottoms of the things we need to change. It turns out there are only a few things God can't do. He can't make us change our hearts or minds to forgive, to learn to love, to be humble. It has to be us, so I'm thinking that even in Heaven it'll have to be our choice to change.

Not that He wouldn't help us. He helps us heal and grow here on Earth, so I'd imagine we'd have His help in Heaven too. But many people choose to not heal, even with God's help, so I wonder how things will go if they would choose not to heal in Heaven too. No, I just don't see God doing all of the hard work for us like a soccer mom. It just never seems to actually benefit anyone anyhow.

I also think we've imagined heaven to be "the great retirement in the sky," with endless golf and sangria and nothing else. If that's heaven, count me out. I hate sangria. And golf. I bet in heaven we'll still face challenges. Trust seems to be one of God's favorite aspects of his relationship with us. I'd be surprised if we got to heaven and everything was done for us with nothing to do but for us to get fat and lazy. I just don't think it'll be like that.

I think God built into us something of his own heart- something that loves challenges, loves taking risks and loves seeing the impossible come into reality with his help. Trust is only built in risky environments. And as eternity is much longer than anytime here on Earth, doesn't it seem like God wouldn't limit trust building with Him to a single earth-lifetime?

Through all we Bumsteads have been through, though it's been at times intensely painful, I have to say I feel God's presence more now than ever before. I trust Him more than I ever have. I've invited Him to participate in every part of our lives like I never did before. I've asked him to help me change my heart in ways I was never willing to before.

I do know that in Heaven there won't be the fear of death. Maybe risks and challenges and changes in heaven will be exciting because death will have been conquered. Maybe we will find that God loves us enough to accept us as ourselves and that He will continue to be perfect even if we take a bit longer in Heaven.  Maybe we will look forward to what crazy thing God has planned next. Because in heaven we will have unlimited access to Jesus to hold our hand through anything He puts our way.

It turns out, that's pretty true of our life here on Earth too.

Saturday, August 23, 2014

Scooters and Beach not allowed

Tonight Grace was riding her scooter as fast as she could. I had to tell her to stop as I have high suspicions that her platelets are low again. It's just too dangerous, so she's playing the iPad instead. She's happy about it, but my heart is sad a little.

We were going to visit with friends at the beach this Monday but I had to cancel. Not only is her ANC very, very low (which means she's nuetropenic), but her port has to heal for 24 hours before it can get wet, and we're not taking the bumble bee out until Sunday night. So Monday is a no-go.

It's hard to get her out- between nuetropenia and low platelets, there aren't many places she can go. Outside parks are fairly germ free, but falling off play equipment is too dangerous. Indoor play centers aren't dangerous, but house too many germy kids. Friend and family houses tend to work, but we've been at the hospital so much that it's hard to go visit.

These last three weeks have been exhausting. We've been at the hospital three times a week for the last three weeks, for a total something near seventy-two hours. She's been nuetropenic most of that whole time, which is why she was rejected for the lumbar puncture so many times. It also is why we've had to be very careful to not be around the general public again. Which makes grocery shopping and Target very challenging.

Thankfully she should start to recover in the next two weeks, and then she'll be on a low dose of chemo for a month. It should be our "vacation" from cancer, if all goes well. Then she'll start this same two-month cycle that we're finishing up this week. There won't be any more inpatient hospital stays as long as she stays fever free, but we'll be back to two or three times going to the hospital for some hard-hitting chemo rounds.

I'm really not looking forward to it. In fact, we'll probably need help in a lot of ways for October and November, if anyone wants to volunteer.

But how thankful I am for friends and family who've carried us through these last three weeks. How we needed it! And how thankful I am that we'll have a few weeks of peace before heading back in to what we pray will be Grace's last cycle of rough-chemo treatment.

How thankful I am that cancer is not forever.

Thursday, August 21, 2014

Waiting for LP

We were told that our journey would be a roller coaster, and I think I may have whiplash. Not that there's anything wrong at the moment. We're here at the 7th floor surgery center waiting to see if she will make counts today. It's likely she will...she's been off chemo for nearly two weeks and she had two blood transfusions this week. But if she doesn't make counts then I'm concerned only because I don't know what it means. Sometimes the unknown is the hardest part.

We can spend days and even weeks being perfectly happy but then the next day we're back dealing with the realities of cancer. On good days cancer lurks quietly, instead of like today where it is front and present. The emotional toll of back and forth is hard for me, it's very tiring. I think I'm just tired in general, if nothing else, from the traffic.

When I'm tired I get cranky. Especially when I want coffee and I know it's there, brewing seven floors below me. Unfortunately it it took us nearly two hours to get here today so we didn't have time to stop by the coffee stand. In fact, we ran up to the surgery check-in so we could use the restroom and get her name started in the que since we were nearly half-an-hour late.

And when I'm cranky I start the "just" game. If I could just have coffee, I'd feel better. Why can't Grace just sit and watch cartoons instead of jump around the waiting room? If we could just come to the hospital less then I'd be happier. I decided to cut my "just-list" short.

This is the path God has for us today, and whining about it won't change it. So I prayed that he would provide the peace I needed. I asked for his presence to be with us today in the hospital room. I asked for his patience and an abundance of grace for Grace. And he did.

I wish he had sent coffee too...

Monday, August 18, 2014

Many Miracles

I've been thinking about miracles and answers to prayer, and I think I've had it all wrong.

I talked to my wise brother-in-law and his lovely wife and they think we see very few miracles in America because we expect so much. We expect to own a house in our lifetime. We expect a car, a job, access to clean water, enough food, a good education. We expect to live in a land that is ruled with justice and freedom. We absolutely expect to be well in body, to the point that we are offended when we are ill. Many people in the rest of the world would consider it a miracle to have even a few of these things in their lives. We have all of them, or most of them, almost every day and we're still unimpressed with God.

We've been having miracles in the Bumstead house, since day one. But most people would deny them to be miracles. Because they seem too small. Too regular. Angels didn't trumpet them, the voice of God didn't shake our house.  But to us they are real, tangible miracles that remind us that God is part of our struggle and that He's protecting us constantly and answering our prayers.

This weekend I absolutely expected Grace to be inpatient. Last Thursday showed Grace's ANC and white counts were low, and as she's been taking three hour naps daily and has been bruising, I was expecting a fever to happen for sure. And fevers always mean a three night minimum stay at the hospital.

Today her counts are even lower. The doctors were even surprised that things haven't improved. But instead of running fevers, she's running circles. She's swimming and laughing and playing. That is a miracle. Maybe not to some, but to us it is.

Twice in this ordeal Grace has started fevers. Twice we prayed and the fevers went down to normal within an hour or so. And of course there have been many times we prayed against fevers and they took days instead of hours to resolve, but those two times were there to remind me that God is still active and listening.

And those times it took days and weeks for her to heal, and it took the assistance of a boatload of medicine, we still find it a miracle that she healed. Personally I believe medicine is a miracle. I believe it is a miraculous that God has given us the ability to create medicine from the elements in our own environment. There is also no part of medicine that isn't "natural," as even the derivatives and compounds created in labs still originate from the atoms God created at the beginning. That's miraculous.

As Grace still has very low counts a fever could come anytime. Infections are so common at this phase, and even a simple infection can be life threatening. But I have total peace right now. I know that God has brought us this far and His promises to never leave us or forsake us are true. I know that in life and in death He has kept us in the palm of his hands. He has been our very real help in time of need.

And peace that is stronger than the fear of death is a miracle.

Saturday, August 9, 2014

Carrying On

Yesterday I was going through photos. It was the first time I've looked at inpatient photos since we got home. 

The photo of Grace, pale and hooked up to the "Christmas tree" tower, was almost too painful to see. I wondered to myself, how were we able to survive the agony of seeing Gracie suffer? How did it seem bearable at the time? 

If the presence of God hadn't been with us, we would not have survived it. Or if had we survived it, we would have at least come out broken and wounded in heart and mind. But here we are, still batteling cancer, and we are whole, full of peace, joy, and holding onto Jesus more than ever. 

Gracie is not cancer or chemo free yet, even though she's done chemo bombing. We still go to the hospital once to twice a week. Actually, it's very similar to the schedule and treatment Gracie got when she was first diagnosed. It's even called "re-induction."

Similar to when she was first diagnosed she's currently getting chemo at least once a week at the hospital, as well as blood transfusions. She's also getting chemo via pills at night and I also give her a transfusion of chemo at home four days a week through her port. Because she has to stay accessed we're banned from swimming. Because her counts are getting low I'm back to being cautious about outside activities, though better this the paranoid me before.  She's vommitting occasionally and losing weight rapidly- she just doesn't want to eat. But overall she has tons of energy and has been enjoying life to the fullest. 

I have moments of fear but i know that the God who came beside us when we needed him the most will never leave us, no matter what the future or cancer brings.