June 10, 2014…And at the end of each day we still have hope

Well here it goes…so much to update and so very much to say. Not sure where I should begin so I will just pick up where we left off. As you all know Bailey was doing well on the irinotecan/temodar chemo with little side effects or so we thought…that was until it was time to scan. Then there it was again, like a punch in the gut…more progression. My precious baby girl was lying on that MIBG table, as I was staring at the screen that was lighting up everywhere in her little body. I wanted to cry (sob really), scream, punch something, throw that monitor across the room, stomp around like a 2 year old throwing a tantrum…but instead I sang to her…because that is what she wants me to do when she is in scans…sing or read or make up some fairytale story about fairys or mermaids, so that is what I did. After scans were over, Dr.Bob came to get me from clinic to discuss the news… he could see it on my face…I already knew what he was going to say. I already knew that this freaking cancer was spreading like wild fire all over my sweet girl’s fragile body. I had already prepared myself for the “it’s probably time to call Hospice and enjoy the rest of this time with her” speech that I received last scans, but much to my surprise that was not the conversation that took place. In fact, the conversation that happened was exactly what I had been praying for since January, when we first received the news of progression….a conversation that says maybe it’s possible…we don’t know for sure and I can’t make any guarantees but maybe there is some hope…we will try!

So after a lengthy discussion, Dr. Bob agreed to try a new approach. This new approach would involve more chemo and alot of unknowns, but at the end of the day it still gave us hope…hope that it might work…hope that we might get more time with her. Just plain HOPE! The chemo he was willing to try on her is a combination of Doxyrubicin and Velcade. The catch with these two chemos is firstly, velcade isn’t a chemo that is used for neuroblastoma and secondly, doxyrubicin has a lifetime max amount a person can get and Bailey is so very close to that amount…. so this would take some creativity on his part to formulate just the right dosage amount to safely administer an amount that would be effective. Thankfully, we pray for God’s guidance in everything where Bailey is concerned and Dr. Bob was able to come up with a great plan that will carry us over until the new T-Cell trial in Houston (that we are praying Bailey gets a spot on) opens up this summer…but remember, this is only IF it works.

So Bailey started the first cycle of this new chemo combination and all went great! She handled the chemo like a rockstar and there were very little side effects. She was able to get 1-1/2 weeks break in between cycles before having to start the second cycle. The second cycle went great as well and was seeming to go exactly like the first one until…the horrific pain started. Bailey started complaining that her left leg was hurting…the pain was gradually increasing as each day passed. At first we were thinking it was a side effect from the chemo, Velcade, as it is known to cause horrible neuropathy (nerve pain). We increased her gabapentin (nerve medicine) as well as put her on pain meds…but the pain only got worse. Needless to say, the pain was at an all time high last week and then a fever. Of course, anytime a fever happens it gets us a trip to the ER. Any other time a trip to the ER would be no big deal but this trip happened on Tuesday morning, as we were getting ready to travel to New Orleans for scans. So here we were all packed up and ready for a two day stay in New Orleans but instead I was rushing my sweet girl to the ER at 5am. Let’s just say my nerves were shot…I knew she needed to get to the ER so we could address the fever and of course the pain but I also knew this meant she would probably not be able to get scans that we so desparately needed to know if the new chemo was working. Upon arriving at the ER it was determined that the horrific pain and the unusual looking rash that appeared only days before was probably SHINGLES!!! Yes, on top of everything else my poor baby has had to endure, now she is fighting shingles! So after several phone calls to her oncologist, it was decided she should probably be admitted inpatient to make sure the fever stayed away and to make sure the rash was definitely shingles. Thankfully, her oncologist knows how I am regarding her care and allowed me to drive her to Ochsner’s in New Orleans, as oppposed to being sent by an ambulance. After two IV antibiotics and a quick stop to pick up Mimi and Ellie, we were on our way to New Orleans.

Upon arriving to New Orleans, we were informed that Bailey would indeed be able to get the scans! Praise GOD, another answered prayer! So off we went…rushing Bailey to get her MIBG injection before bringing her to the inpatient floor on the 4th floor of the hospital, all the while trying to keep Ellie occupied, fed, etc and checking into the hotel that is connected to the hospital so Mimi and I would be able to switch out between the girls. Yes, it was a crazy day to say the least…but as always we made it work and all went well! Bailey was able to get her scans, as well as a biopsy, that proved she did have shingles. Thankfully she only had to stay one night in the hospital before they let her out…we agreed to stay an extra night in New Orleans just to make sure the fevers would stay away and so she could receive another dose of IV antibiotics.

So back to the scan part! As she was getting scans, I kept praying (as I always do) and reading all my scripture verses I keep on hand… as it helps me from letting my mind wander to places it doesn’t need to and helps me to focus on God’s promises as I should…because that is where our focus needs to be…on God’s promises in HIS word and not on reports of man (ie scans). Well, as I am reading and wrestling with trying not to analyze the monitor showing all the places where the disease is, I came across one of my favorite verses in Matthew 8:13 “as you have believed so let it be done for you”. At that very moment a peace came across me as I decided to look at the monitor. For once I didn’t feel anxiety, fear or panic…I felt true peace that can only come from God. My heart was at peace in knowing that God hears our prayers and knows the every desire of our hearts…He knows we believe in her healing..no matter what!

After scans were over we discussed results…and results were “Disease is stable”!!! Praise God praise GOD!!! Stable is great news…stable means the new chemo is working…it is keeping this awful disease from progressing even more. We are so very thankful for all the prayers because we know it is not chemo alone that is stopping this disease…we know it is prayers and it is GOD! Of course we would have loved to see clear scans, but we also know that is not how God works…HE doesn’t always give us want we want when we want it…but he does give us what we need when we need it…and that is where we put our faith. Our faith is in HIS promises that “by HIS stripes she is healed”…and at the end of the day I do not need clear scans to prove this. I need patience to wait on God to reveal her miracle in His timing. Until then we will be thankful in everything, every situation and for every blessing…because we are blessed! Hard times will come but during those times is when our faith is put to the test and when we are taught to trust and keep that faith alive. We will never give up…we will never lose faith! We believe in her healing and we believe NOTHING IS IMPOSSIBLE!!!

Psalms 39:7 “But now Lord what do I look for? My hope is in you”