Thursday, July 16, 2015

Lessons from Chemo

These last 18 months have been a roller coaster, mostly free falls but some highs. This week I was stuck at home (quite literally) and had some time to reflect. Here are the lessons chemo has taught me,

Chemo port surgery
- You are stronger then you can ever imagine. 
Each time our situation became worse I can clearly remember turning to my wonderful husband and saying something like, "If Emma ends up having cancer you are going to have to check me into a mental health facility." I was not joking. Then I got the call that it was cancer, cried for a few hours and put on my big girl face to fight this dragon. Each free fall it was the same, I thought there was no way I could handle more but more happened and each time I kept living.

- There comes a time when you must admit your faults and limits. 
Most people do not know this but when we were in Hawaii I was in a great deal of pain most of the time. I had extreme stomach pain and felt "off". The day we got back I went to my doctor and discovered that all this stress caused bleeding ulcers, vertigo, depression, and a heart condition. I was faced with the choice of medication or developing life altering conditions. I swallowed my pride and went to the pharmacy. Best choice I ever made.

- You realize that somehow ends will meet. 
We have been close...too close to ends not meeting at the end of the month. Somehow we always make it. I budget tighter, friends start a meal train, people do fundraisers on our behalf, random
First hair cut, half lost to chemo
packages and checks arrive unannounced with notes of well wishes. Are we still drowning in medical debt? You bet! However, we always have gas to get to appointments, a full fridge, clothes to wear, toys to play with, and love from friends and family to keep us going. It took this entire 18 months for me to realize that God will provide, He always does, and to let go.

- Always challenge, always get a second opinion, never lose hope.
 Doctors really now how to stop your heart and give you a panic attack...and they are not always right! A couple weeks ago an Oncologist told my husband to stop questioning, stop getting second opinions, and just trust in the team they have at the hospital. If I had listened Gracie would have had brain surgery by now and possibly chemo when neither are necessary, that should scare you. It frightens me to pieces. If I did not cart her off to Standford and it all ended up being overkill I could never forgive myself. I say do the opposite of what that Oncologist said, always question, always get a second opinion, only trust when you run out of options.

- Some people just do not care. 
No, it is true. Some people do not care if you have two sick kids, if one is immune compromised and must stay at home, if you had to force yourself out of bed that day knowing it was going to be a horrible chemo filled day. They just do not care. You cannot make them care. I have been baffled by people using a phrase like, "Well we all have lives out of this but..." No. No. No. They just do not get
Our friend Sophie before she passed
it. You also do not need to have them in your life. Just move along.

- As hard as it is to watch other children fight and lose to cancer you NEED to connect.
Tears, oh the tears and heartbreak. Few things are as tragic as watching a a child suffer. The first few months at chemo I tried to go with my head down, do not make eye contact, I have enough to deal with, do not see the bald children. I was alone. So alone. Then I reached out to a Chemo Mom and felt normal for the first time in this whole journey. Someone understood. When asked how I am doing and I say, "not great" they know what I mean. We all need that connection to people who understand. It will not be easy, children will die, but you need that relationship.
Make a Wish

- It is not all bad.
90% of the time life sucks. But sometimes we get a normal day, a Disney trip, a Make a Wish journey. When you get those days they mean so much more then they did before cancer. You soak it up like rain on a desert. It is heaven. 

Monday, July 6, 2015

On Our Feet

Somehow we always land on our feet. Lord knows we have had some close calls but somehow we always get by just barely. My dear husband and I have been through more in our eleven years together then most couples experience in an entire marriage. Through it all our grip on each other only tightens, "Love will keep us alive." It was our song as high school sweet hearts but now more then ever it rings true.

Sometimes I see divine timing in such a clear way that I acutally laugh. Today was that day. This weekend Brad and I spent a lot of time taking care of his car situation. He was driving a car that was unsafe and unable to transport the children so we fixed that issue. For one whole day we had two cars that could drive the kids to appointments. One, glorious, day. Today I pulled into Brad's work to drop off Gracie and take Emma to chemo. I stopped the van and transferred Gracie from one car seat to the other, gave Brad a hug, tossed Emma a snack and turned the key. Nothing. I tried again. Nothing. Awesome.

Brad and I quickly transferred Emma and Cora to his car and jump started the van praying it would make it home with him and Gracie inside. If not we had local friends on speed dial to come to the rescue. I drove along the road I drive so often contemplating the timing in all of this mess. On our first opportunity to use Brad's fixed car to transport the kids that is exactly what was needed on that day. What a testimate to God's provision for our family!

Emma's immunity numbers were low today so she is under house arrest for awhile. I am really nervous that Brad will take off tomorrow in our only working car and then Emma will need to go to the doctor but I am stranded here at home. Car mechanics seriously need to make house calls! Please say a prayer that I can figure out how to get my van fixed this week without taking Emma out of the seems an impossible task.

On an unrelated note our friends at Fitness Factor that did the car wash for Emma last year are doing one for Gracie this Saturday from 9:30-1. It is the gym on First Ave in Arcadia. A huge thank you to Kevin for organizing this for us, what a blessing! LA friends please make sure to stop by! I will give more details this week. Fitness Factor Facebook

Friday, July 3, 2015

Pride and Oncologist

"Pride cometh before a fall." Words spoken so often they are now a cliche. Why? They are true. We have been met with great and fierceful resistance by our Oncologist specifically but also by our Genetics doctor on referrals and second opinions. We were told outright last week to stop getting second opinions and trust the team they have assembled at Childrens.

The girls at Stanford

At Childrens they had Gracie as a risk for quadriplegic, brain tumor, cancerous death. The terms DIPG were tossed out along with suggestions that chemo might be in her future. We were told of brain surgeries that would remove bone that were necessary and needed to happen as soon as possible. So soon in fact that the Oncologist did not want us to leave the hospital with out talking to the surgeon on the day of the MRI.

They should know by now that I am a well educated, well informed, well connected mother. That I never do anything with out a second opinion, that I am not vague, that I will fight for my child. You do not tell me no. So I packed up the car and took my babies to the best doctor on the west coast.

Guess what. He was wrong. Gracie does not need to be rushed into surgery. She can wait and have another MRI in three months to see if there is improvement or not. She does not have a DIPG or brain tumors. She does have the same optic nerve tumors as Emma and other issues requiring therapies and tests and monitoring but she will not die or become a quadraplegic. The sky is not falling.
The American Girl store trip before appt

What if I had trusted in their team? What if I did blindly follow? Gracie would be undergoing an unneccesary and risky brain surgery. Not cool. Makes you wonder if there have been any other mistakes? Ya, us too. Stanford will be going through Emma's records and test results with a fine toothed comb. I want answers and I want them from the best.

You can bet that there will be a conversation at chemo this Monday and perhaps more.

Moving forward there will be more doctor appointments for Gracie. First to a very specialized eye doctor at Stanford to evaluate her optic nerve tumors, we are hoping she will not go blind like Emma. While we are there he will see Emma as well. Second, Gracie will begin several different therapies. Our hope is that her issues will become unnoticeable. Emma is also starting Occupational Therapy for her prematurity issues. The drive to Stanford is brutal. It took over four hours for us to get home. It will be really rough to cart the kids back and forth often but it is the best thing for the girls so it is what we will do.

To sum it up our trip to Standford was fruitful. It gave us hope, something I felt I lost several months back. For the first time in two years I feel like I have a chance of seeing all three of my children to survive to adulthood, that makes me cry happy tears. The war is not won but we have gained ground. You are going down cancer dragon. If God is with us, who can be against us?