Elaine and I have been enjoying (extreme sarcasm) the last week at The Chilton and I expect we will be here several more days. We have spent the better part of the month of January at The Chilton. This is our third stay since Christmas.
The first stay began the Sunday after Christmas. We went to the emergency room because Elaine was having extreme pain that was not able to be controlled with the pain medicine we had at home. We adjusted her pain medication for several days and were able to go home.
We stayed home for about a week and then went to a scheduled doctor's appointment and Elaine was short of breath. She had gone to a movie the night before and just getting up our stairs made her out of breath. At the doctor's office the next day just walking across the room it was noticeable that something was off. She was too out of breath for the short amount she had walked. After a chest x-ray we saw that Elaine had fluid on her lungs and that was causing her to have labored breathing and the reason she was out of breath walking short distances. We were admitted into the hospital and had surgery the next morning to place a chest tube in Elaine's lung so the fluid could be drained. The tube stays in and I drain the tube as needed to make sure the fluid stays off her lungs and she can breathe easily and is able to walk around without being exhausted. We were draining twice a day, then once a day and now every other day so we are seeing good improvement with her lungs now.
This current stay is because of pain and also a complication with the chemo she was taking. Elaine's pain got out of control and couldn't be brought under control with the oral medicine we had at home. This was January 19th. We had a doctor's appointment that day and I kept asking Elaine if she wanted to go ahead and go early but she didn't want to be there any longer than she had to so she kept saying no. Elaine is stoic and has a high tolerance for pain but it got to a point where it was too much for her and then she got scared which sent her into a panic attack which left her short of breath and what she said to me was I can't breath so I didn't know what else to do but call an ambulance so we went to Children's that day by ambulance. Luckily I had anticipated that the day was going to end up in the hospital so I had already called in to take the day off from work and cancelled appointments and such to clear the day. I say lucky but I know better. God has guided me and prepared me in many ways through all that has happened these last 7 months and after I had time to reflect that day I knew it was Him and not me. He had kept me calm while paramedics and EMTs came into my house to take my daughter out. Elaine and I took our first (and hopefully only) ambulance ride to Children's Hospital. Elaine's comment about the ride was that the ambulance smelled. Getting through the emergency department, through admission and settled in a room does take much less time when you enter by ambulance I will say. So here we are on day 9 of this hospital stay which is our longest stay to date at Children's.
In addition to the pain Elaine was experiencing she was jaundiced. This was new and I hadn't really noticed it until we got to the emergency room. When her labs returned it showed that her pancreas and liver numbers were elevated which showed something going on there so we had a CT scan of her stomach and pelvis area to try to see what was going on. The results of the CT scan showed no tumors in her stomach, liver or pancreas so it was determined that the chemo she had taken most recently was causing pancreatitis which is a known side effect of that drug. Chemo has to be stopped until these numbers get back into a normal range.
The good news in all of this is that the cancer is responding well to the radiation. So far we have radiated the right foot, left shoulder and right pelvis. All of these areas don't show up on a PET scan anymore. We then radiated the breasts and neck area and you can see a noticeable difference in those areas. Her lungs which are getting some radiation because they are behind the breasts that were being radiated are also responding well in that the fluid on her lungs has decreased. We left the hospital last time with oxygen and now she uses no oxygen; she's totally on room air. There are some places on her head that we have started radiating. We are starting soon to radiate areas on her back that are causing her a lot of pain. We aren't going to beat this cancer only with radiation but hopefully radiation can alleviate pain and kill the cancer we are able to radiate until we are able to start chemo again and find one that will kill the remaining cancer in her body.
I won't lie, this is difficult. It has been a long time since I last updated because it's just hard to write about. God has a plan for Elaine and for me and His ways are better than our ways but its hard to understand this being His plan. I know God is at work in all of this. There are two many people praying for us and too many people coming to our aid for Him not to be. Good will come out of our suffering and a miracle is not out of the question; it's His timing for a reason.
Our goal is to get home. To get home we have to have the pain controlled. What that means is that the medicine that we have at home has got to be able handle her pain. They use a pain scale to describe pain. Elaine lives with her pain at a 3 or 4 normally on pain medicine. Sometimes lower; sometimes higher. When her pain starts reaching 6,7,8 we need to get it back lower with more medicine. When we came to Children's by ambulance she rated her pain at a 10. I have to have available at home pain medicine that can handle these spikes. The medicine she is taking now is through an IV and requires a RN. We can go home with an IV that is kind of a fanny pack setup but we still are showing that we need boosts above that. We are going to keep working to try and find the right combination. We may try an arm pain patch; conversations are still taking place about how best to get home. When we get home we want to stay home for a while so having all the pain medicine necessary for the various situation is key. We will come home using the services of a home health care company.
I'll post another update when I have more to tell. Thank you for all each of you has done for us especially for your prayers and for continuing to pray. This is a marathon and not a sprint and each of you are encouraging us to keep going and not give up. Thank you!
Do not let your hearts be troubled. Trust in God; trust also in me. In my Father's house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. John 14:1-2
Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight. Proverbs 3:5-6
It does not, therefore, depend on human desire or effort, but on God's mercy. Romans 9:16