As you can guess by today’s blog title we are home!!! We have actually been home since Saturday, October 8th. We had a pretty rough week following treatment as Bailey had to adjust to not being able to take pain medication as she did the week of treatment which meant her body had to adjust to feeling “normal” again instead of numb from all the medication. Needless to say it took us almost a full week to wean off of the pain medications as well as to get her back to normal from all the lovely side effects those pain medications bring….inlcuding moodiness, residual pain, severe constipation, no desire to eat, irregular sleep patterns, sensitivity to hot/cold, nausea, etc, etc… Definitely was not a very fun week for any of us but as always she pulled through and is just fine. She is actually back in school and we are back into our home routine We have been making the most of our time at home. We enjoyed a weekend at the beach to celebrate Granny Carla’s birthday (Cody’s mom), gone to the movies, eaten at Bailey and the boys favorite restaurant (or the fire grill as Seth and Aidan would say), had movie night at home, etc. etc. There is definitely no place like home!
Thankfully her next treatment doesn’t start until November 7th which means we will get to celebrate her birthday at home before we leave. So hard to believe my little girl will be 9 years old. Funny how the time flies…seems like only yesterday I was a very scared 21 year old taking home my sweet little innocent girl wondering how in the world I was going to raise this little girl on my own. It simply amazes me each and every day how fast life can change and how the plans you made never really go according to plan but where life leads you is so much better than you ever could have imagined. I am so very blessed to know that I will get to watch my little girl turn 9 years old, when I was told that she had a 30% chance of making it only 1-1/2 years ago. The power of prayer and faith is a wonderful thing!
Let me first begin by saying our time at home was absolutely the best…Cody and I got married on Sept.24th and I must say it was PERFECT! Everything was beautiful and we had the time of our lives. Our little family is now one and it feels wonderful. I never would have thought last July when we started dating…me and Bay in the middle of this crazy thing called living life with cancer with the craziest schedule ever and Cody right in the middle of a nasty divorce that I really wanted to be no part of but despite my better judgment decided to start dating him anyways because I knew in my heart of hearts what a great guy he was ….that a year and a half later things would have somehow worked out and we would be united in marriage…I guess God’s timing is everything! Anyways I will post pictures soon so you all can see how perfect our day was…and our kids were absolutely adorable!!!!
So now to the part I have been dreading to talk about….treatment week!!!! So we flew up here on Sunday and got settled in ready to start her treatments at 8am on Monday. Monday gets here before we know it and of course the doctors prepare us for the worst week possible because she is getting high dose 3f8 and it has much more side effects than the regular dose we are used to her getting. Well little did we know how bad things would actually be. For starters Monday’s treatment was absolutely horrifying…at one point Bailey was screaming at the top of her lungs that she felt like she was dying and for me not to leave her side. I cannot explain to you how I felt in that moment to hear my 8 year old daughter tell me this. If that wasn’t bad enough the nurse comes in to the room with a look on her face that told me something wasn’t right…sure enough Bailey’s blood pressure was dropping and her heart rate had doubled. The nurse then began trying to get a manual blood pressure and could only hear a faint pulse…so at that moment my heart sank into my toes. As we stood there watching three nurses trying to get Bailey to respond and trying to get her blood pressure to come back up the seconds felt like hours. Needless to say after several bags of fluid and stopping all pain medicines her blood pressure starting coming up and her heart rate steadied….ok so yes a very rough day. That first night wasn’t so bad with her only waking about three times during the night for pain medicine…the next day however was a different story.
So Tuesday we went to clinic so she could receive her treatment and of course the nurses were ready for her after experiencing such a scary day on Monday. Much to our surprise the treatment went ok. Blood pressures stayed stable and heart rate stabilized in record timing. We left the day hospital around 6:30pm and headed back to the Ronald McDonald house hoping for a good night. Let’s just say that is when the flood gates opened so to speak…Bailey was in so much pain she couldn’t sleep and despite me giving her pain medicine around the clock it wouldn’t even dull the pain she was feeling. That night seemed to last forever and none of us slept at all.
Wednesday in clinic was pretty much a repeat of Tuesday with treatment going fairly smoothly but once again our night was horrific. By 9:30 last night I couldn’t take seeing her in that much pain. I decided to put a call in to the pediatric team at the hospital to see if there was something more I could do to lessen her pain. She would literally curl in a ball and scream at the top of her lungs the most heart wrenching cry you never ever want to experience your child crying. Her cries would lessen for about 5-10 minutes and just when I thought she was falling asleep it would start again….I tried holding her, putting hot packs on every inch of her body, singing her favorite songs to her, sitting her on my lap like I used to do when she was a baby…you name it and I tried it…NOTHING was working. Finally I received a call back and the doctor told me to up her dose of dilaudid (morphine) to 6mg every three hours. As you might already know this is a very high dose, especially for a child but she needed something. So our night went with me giving her pain meds every three hours, followed by benadryl and hydroxizine rotated every two hours. I can honestly say this is the week from HELL.
We are in the day hospital again today getting her treatment and the doctors informed me that they are putting her on a pain patch to try to help give her some relief from the pain. So in addition to me giving her 6mg of dilaudid every three hours, she will have this pain patch that releases constant pain medicine in small increments throughout the day. This patch is good for 72 hours which will be very helpful considering we are flying home on Saturday and the doctors said that with high dose 3f8 she can experience this pain until several days after treatment ends. I will also have to wean her off of the pain medicines gradually because she is getting so much and there is a high chance she will experience withdrawals including vomitting, sweats, shakes, etc etc….
I am so very thankful tomorrow is the last day of treatment as I really do not know how much longer I can watch her suffer like she is. This week she has experienced more pain than she has in the past 1-1/2 years. As her mother, I know this is a necessary part in her process to staying cancer free but it does not make watching her in such severe pain any easier. No one should have to experience this type of pain…especially my 8 year old daughter. I hate this….I hate seeing her like this and I especially hate knowing there is nothing I can do to take it away…..no matter how hard I pray I cannot fix this…and as much faith I have and as much as I believe in prayer…it still freaking sucks!!!!!
She is a precious little girl who should be playing dress up with her friends and fussing not to go to school…not laying in this stupid hospital bed fighting for her life for something she does not deserve…It is not fair….We can put people on the moon but cannot find a freaking cure for cancer…it makes no sense to me!
Ok now that I have said how I am feeling (although I made sure to tame it down because if I said how I really feel you might all think I was going to lose it at any minute)…I will once again ask that you keep her in your prayers now more than ever. Pray that this horrible pain goes away…pray she gets rest…pray that this treatment works and she can go back to being my spoiled little girl.
***On a positive note I met with the radiation oncologist today. Bailey does have to undergo 14 more cycles of radiation to treat the site near the liver where where she relapsed but they have agreed to wait until after the holidays to start this….I can say that made our day…I promised my little girl she would not miss any more holidays with our family if I can help it and I will do everything in my power to keep that promise…it’s the least I can do! Thanks again for all your prayers