Well first and foremost I need to start this post by saying Happy Birthday to two very special little boys, our twins…Seth and Aidan! Today we celebrate them turning 10!!! So hard to believe how big they are getting and how fast they are growing up. They are such a joy and blessing to our family. Two little boys so very much alike and yet so very different, in so many ways. Our family is constantly entertained with these two and they are very much like there daddy in more ways than one! They are so loving, kind, protective and just all around great kiddos! We are so blessed to watch them grow up into the little men they are becoming! So once again HAPPY BIRTHDAY SETH AND AIDAN!!!! WE LOVE YOU TO THE MOON AND BACK!!!
So as you all know Bailey had great response to the new chemo combo. Unfortunately she received the last round of that combo she can get two weeks ago. She has now reached her lifetime max of the doxyrubicin and has to be taken off of that chemo…even though it was working. If she exceeds more than the lifetime max she is even more at risk of developing secondary issues such as heart failure, etc…so off she goes. We are now in “unchartered waters” as Dr. Bob calls it because we have decided to put her on the ALK inhibitor, Crizotinib. Usually the patient must be tested for a specific gene in order to be approved for this chemo but as usual God opened doors and things just fell into place. We were thinking even if the insurance did let the medicine go through I would probably be responsible for paying the entire medication out of pocket since she did not have the proper testing. The cost of the medicine would be approximately $10,000 for a 30 day supply…..eeesh right! ( And people wonder why more cures aren’t found….pharmaceutical companies are making too much money off of these drugs!!! But that is another discussion for another day). Thankfully God was working behind the scenes…I was in clinic discussing all these things with her oncologist and all of a sudden my phone rings. On the other end of the phone is none other than the specialty pharmacy calling to arrange delivery and to collect payment. Of course I was expecting to have to explain how I was going to get $10,000 to them in order for them to deliver this medicine she so desperately needed to start, but much to my surprise not only was the medicine being delivered in 4 shorts days but my co-pay was only a mere $25..talk about make a few jaws drop as I repeated this information while I was still on the phone with them!!!! Let’s just say I wasn’t the only one that thought God had a hand in this…one of the other doctors on Bailey’s team of doctors passes by the door, as Dr. Bob is letting everyone know the news I just received, and says God is definitely working on your behalf, everything will be ok. So good to get reminders every now and again to let you know HE IS ALWAY IN CONTROL!
So my sweet girl started the new chemo this week and so far so good. It is an oral pill that she takes twice a day at home. She has had a little nausea but nothing too bad. We are believing this will work to keep her stable or improved until the trail in Houston is open. She is still on the waiting list for the T-Cell trial at Texas Children’s Hospital but there have been a few delays so until then we have to figure out how to keep this stupid disease from taking over. I received an email the other day saying the trial is now set to open sometime in August but no definite dates just yet….until then we pray! All prayers believing with us would be greatly appreciated 🙂
Now on to why July is such a hard month…Let’s just say this month has always brought craziness and complete heart break in the past few years. Last year at this time Bailey was on the Nifurtimox trial in Michigan and was experiencing several seizures. I will never in my life forget how I felt watching her go through that. It is something I pray God will erase from my memory over time…it was devastating! She was severly underweight from the medicine making her so sick and things just weren’t good…she was not in a good place. July also marks the month that we lost our dear little friend Henley. How I wish I could turn back the hands of time for the Romines…if you ever had the chance to meet this precious little girl you would understand just how special she was. So hard to believe that July 19th will make 1 year that Henley left this Earth…so heartbreaking. Hearing the devastating news of children passing away from this awful disease is always hard but it really hits home when the family is so dear to your heart. Only one short month before Henley passed we were in Michigan at the same time her family was. We went eat dinner, played cards in their room until very late at night…we were all together just going through all this cancer crap together but it didn’t matter because our kids were there and we were all fighting this together. We are so thankful we had that time with her and we were able to make those memories with the Romines. Please keep the Grant, Lynsey and Cooper Romine in your prayers over the next few weeks but especially on July 19th….my heart aches for them and although I understand many of the struggles they had to face in Henley’s 4 short years on Earth, I can’t imagine this hurt…I am so grateful that even though things are not the best for us and this disease has spiraled out of control…I am not in their shoes and because of this I remember to thank GOD everyday for each day I get to spend with Bailey. Some days are harder than others but at the end of the day she is here with me and that is all that matters.
As always, thank you for the prayers and support…NOTHING IS IMPOSSIBLE!!!!