Children's Hospital - A Second Home

From Elaine's CaringBridge Site

Journal entry by Laura Roberts — 7/23/2015

Last week was week 7 and Elaine had her treatment in the hospital. We were there three days. She got two new drugs (Cyclophosphamide and Doxorubicin) plus Vincristine (she has been getting Vincristine since week 1). It seems they have found the right combination of nausea medicines for Elaine because she didn't get sick once even though she was very nauseous. The Doxorubicin drug is nicknamed The Red Devil so the Nurse Practitioner tells me. This drug will most likely take the rest of her hair. The little that is left is coming out daily. These drugs also reduce the number of red and white blood cells and platelets made in the bone marrow. A low number of red blood cells can make you feel tired and weak. A low number of white blood cells can make it easier to get infections. A low number of platelets causes you to bruise and bleed more easily. This is where we have to be really cautious making sure that Elaine is not around people who are sick and being selective about where Elaine goes. Until now Elaine's numbers have been good and remained in the normal range. Now we are knocking her counts down bringing them back up and then knocking them down again. Elaine is taking a Neulasta shot to bring her counts back up once they go down. If Elaine gets a fever of 100.4 or has any bleeding we are on our way to the emergency room. If her counts are low we would have to stay in the hospital until her fever is gone and her counts come back to the normal range. Yes, we will be regulars at Children's Hospital between our stays for chemo plus having to go if she gets a fever or bleeds. Our doctor has told us Children's Hospital will be our second home for the next year.

This week we are in week 8 and Elaine got Vincristine as an outpatient on Tuesday. Her counts were low as expected even though she looked good and seemed to feel okay (relatively speaking). She got up and got herself bathed, put on her makeup and put on a cute hat. I wanted to take a picture but I wasn't fast enough. I have to take them undetected these days. Yesterday she felt very bad; much worse than Tuesday. She felt achy all day which is how we were told she would feel. When your counts get low you feel like you have the flu. She felt better today. She even made the comment that her counts must be going up because she felt better today than yesterday.

I won't lie; this is tough to watch. It has been a struggle for me the last two weeks. Elaine has asked me questions that I can't answer and it breaks my heart. She is realizing how long 54 weeks is and how tough this is going to be. She told me that normally the school year goes fast but that this year she thinks it will go very slow. I wish I could take her place in this.

School starts in a few weeks and she is going to have to push through some of her pain and discomfort to be able to do her school work. Elaine will be a homebound student. When we are in the hospital there is a teacher there to help the kids with their school work. When she is home she will have tutor to help her. I'm very anxious about how this year is going to go. I even mentioned to her about taking it slow and maybe delaying graduation until 2018. She is supposed to graduate from high school in 2017 and Alabaster is building a new high school which opens with the 2017-2018 school year. It's going to be a fancy high school but my idea of delaying graduation was shot down. This summer Elaine has gotten to just lay around and watch TV and be sick but we are getting close to having to do more than just lay around. She has got to push through and I have got to know when to push her and when to lay off. That is going to be difficult for this Type A Mama. As a sidebar have you ever really noticed how many cancer center or cancer drug commercials are on TV? Me either until Elaine pointed it out to me.

We've received lots of wonderful encouragement. I am astounded each week at how God is providing. Some days I wonder how I am going to make it through the day and before I know it the day is over. Days turn into weeks and just like that we are already at the end of week 8. I have always loved that poem Footprints. I cross-stitched that poem when I was a teenager. I am living that poem right now because this is truly the darkest thing I've had to go through in my life and I know that God is carrying me through it. I get encouragement from Him just when I need it. For instance, the devotional that I picked up one week that talked about how God only reveals our life to us in small amounts because that is all we can handle. So instead of knowing what happens next week we only get to know one day at a time as we live it because that is really all we can handle. Another example is the bible study I am doing on Habakkuk which is about Habakkuk crying out to God about what is happening around him and asking God why He is not doing anything about it. God's reply to Habakkuk was that He was behind what was going on and even if He told Habakkuk what He was doing Habakkuk wouldn't believe it. And that was exactly the reminder that I needed. God is in control and I doubt I would have believed it if God had given me a heads up about the storm that we were going to have to go through. I can't even imagine how this horror will be used but I trust God and it is not for me to know right now if ever. I'm going to do what I can do and let God do what only God can do. My part is to fight this cancer with everything that I have by keeping Elaine fighting with all that she has.

Next week we check back into the hospital for a 5-day stay. Elaine has been very anxious about going back to the hospital. She hates the smell of the hospital. She hates the food at the hospital. As you can imagine it is not too pleasant for the patient. So, we are really moving in. I'm taking our sheets, pillows and blankets so she feels more at home and doesn't have to smell hospital sheets. I'm taking scent warmers so I can get the hospital smell out of her room. I'm taking food that she likes so she doesn't have to eat the hospital food. We are showing up like we are on vacation we'll have so much stuff. Hopefully she will be comfortable enough not to dread the next stay.

Rejoice and exult in hope, be patient and steadfast in suffering and tribulation, be constant in prayer. Romans 12:12

Jesus replied, "You do not realize now what I am doing, but later you will understand." John 13:7

Look at the nations and watch and be utterly amazed, for I am going to do something in your days that you would not believe even if you were told. Habakkuk 1:5.