Treatment Plan and Other Things

In my head I have sat down to write this a ton of times. The hospital is a weird place. Time can slip through your fingers quickly, and sometimes you are willing the clock to go faster when your child is in pain, or you are waiting for test results. We start with rounds in the morning and figure out the game plan for the day with the Doctors. We were given Austin's treatment plan. He will receiving  chemo on a 16-21 day cycle. Day one starts on the first day of chemo and the actual giving of chemo lasts a week, and then so many days till the next dose needs to be given and a chance for his blood counts to go back up. Each day of that week has different drugs at different times given. We have 4 cycles of chemo in the hospital including  a total of 8 lumbar punctures putting the chemo into his spine. What usually happens is a person's blood count goes down and they get a fever from having a low white count (neutropenic fever). Since he has a port whenever he has a fever we have to bring him in to the hospital for antibiotics to be sure that it is not an infection of any sorts. They culture it, which takes two days to get results. If his fever subsides and his blood count looks good they will keep us in the hospital for the next round of chemo. It will be a lot of in and out of the hospital. He will probably have a few days at a time at home in between treatments. The doctors hope that this will be it after this treatment, they are hopeful for a cure. According to the doctors this treatment is no walk in park.

It has been no walk in the park emotionally. How does one look a problem like this in the eye and come out the other side still functioning? How does one have the strength to fight knowing there might be suffering and not the outcome one hopes for? It is hard. For some reason, with exclusion to the initial news at UCLA, I have been by myself with Ben on the phone when we have received news. Can I tell you how hard that is? Standing alone in the hallway crying while the fellow (a doctor just starting to train in their field of specialty)  pats me awkwardly on the back. There is a reason I have lost weight and don't have much of an appetite (not a diet I recommend, too much emotional baggage, ha!).  I have been trying to become closer to Heavenly Father through all of this since I know that we cannot do this on our own. I didn't know though what to pray for. Healing? Comfort? To know that Austin would be ok? I would get up in the middle of the night most nights and bare my soul to Him, not knowing what I should be asking for. Then I figured it out. I asked for increased Faith. Faith that Heavenly Father could cure him. To have no doubt, and no fear, to trust Him. This is a tricky thing since I still feel like I need an eternal perspective, to accept Heavenly Father's will no matter what it is. A question that I have been grappling with is how does one have hope and faith while maintaining a balance of an eternal perspective? I have yet to master this and I hope one day to be able to wake up without a pit in my stomach. I think it will come in time. It has already become a little easier. Maybe that is what it will be like, maybe it will get a little easier everyday. There have been times that I have felt desperate for relief, and after much prayer I have received it. I know that a loving Heavenly Father is there for us, there is no doubt about that. I feel like I am in a battle with myself to allow Him to comfort me and help me. It will take time to find my footing and figure out how to transverse this new landscape.

Now after all that writing about doom and gloom I do not want anyone of you to feel sorry for me. This blog is a great way to reach out to those that want to know what is going on but it is also very therapeutic. Henry has been great through all of this. But Emma is struggling. Would anyone want to write to her to tell her you are thinking about her? I think it would make her day. If you want to send anything to her she loves Hello Kitty, Pokemon cards, make up, Legos, whales, dolphins, cats, crafty stuff, horses, and her favorite color is green. She will be attending a group for siblings of cancer patients. We will find her a counselor and I am trying to find her some friends. I think she needs some cheering up as she misses the familiar (her town, school, house), her friends, even her things as the moving truck has not arrived yet. She misses her parents being together, and her brother. She is trying to stay strong, but it's a lot for an 8 year old. Henry likes cars, emergency vehicles, and duplos. Our address is:

221 Ball St
Northorough, Ma 01532

Our email is:
benandcortney@gmail.com

Thank you for all the lovely messages of support and love! It really does brighten my day. Sometimes I feel paralyzed with fear, anxiety or sadness and then I receive a phone call, text message, or email from one of you. It helps me get out of my funk. It forces me to stop looking inward and to look to something brighter and happier. Austin loves the videos you are all posting. He is in good spirits most of the time. We are so blessed to have him in our lives. He is a ray of sunshine through it all. He cheers me up. If he can have a great attitude then why shouldn't I? His laugh is infectious, and his smile is amazing. He endures more and has endured more than most people ever do or should. He really amazes me, and embodies the saying: I can either laugh or cry through this, and I would much rather laugh.

Our ward has been amazing. They are bringing dinner 3x a week for the foreseeable future until we can find our footing. We already have volunteers signed up till part way through June. They have cleaned our house, had us over to dinner, ran errands for us, built a bunk bed, and offered help with anything. My Step-Mom has flown over and will be staying with us to switch on and off at the hospital, and so Ben can go back to work. I am very grateful! She is always a great help. Now I can have a chance to see my husband and other kids too. We can attempt to be normal once in a while (ha!). My cousin Jared will come and then my Mother-in-law will come to help us get through the rest of the month. We hope to have help for a big chunk of the 4 months we will be in and out of the hospital.  We were blessed to have Ben's company come furnish our house yesterday while we wait for the movers to come with our things. They are also sending a maid service to come and un-pack the house and take away all the boxes. I am so grateful for this. To have a clean orderly space makes it so much easier to deal with everything else.

I want you know that God is good and we are blessed even in this chaotic, crazy, sometimes disheartening time. Heavenly Father desires to bless everyone of us. All we have to do ask and try our best to be close to Him. He will lead the way, and give us what we need. It might always be what we think the need but what we actually need. The following really has comforted me:

"We can’t see the future. That’s what makes the unknown so scary.  Sometimes sticking with what we know, what we’re comfortable with, what we can see, feels like the safest bet in life. But that’s not how God intends for us to grow. Sometimes life requires us to take a leap of faith, especially when it comes to overcoming our fears.

“The natural man and the natural woman says there is no way I’m taking this step. There is no way I’m moving into the darkness until the light moves and I can see where I’m going,” taught Elder David A. Bednar in the video “Being an Agent to Act.”

But the requirement for faith is that we act first.

“Most of the time we think, ‘Well, give me the power and then I’ll act,’” said Elder Bednar. “But the Savior’s gospel teaches that first we act and then the power comes. We don’t know where to go. We don’t know what to do, but my trust in Him enables me to act.”

As we act, Jesus Christ blesses us with His power. Our faith in Him grows, our confidence increases, and we can then navigate the most difficult circumstances in life knowing that we will never be alone and we will always have His help.

Overcoming fear requires a divine power, and we gain that power as we choose to act first in faith."- Why It Will All Work Out

- Cortney