June 27, 2012…. FAITH and HOPE and PRAYERS

Well as you know the scans from last week did not bring the news we were hopeful for. Despite this setback we are NOT giving up. We will continue fighting with every ounce of our being until my little girl is restored to complete health. Of course this is devastating but we must continue to be thankful in all things and give thanks for how far we have come. The reality is harsh but believe me when I say this is the best possible worst news we could have gotten. Relapse is scary and it is not anything we wanted to experience again, but believe me when I say we will be ok…everything will be ok! The spots are small and the doctors are very hopeful with this new plan (which I will explain further in a bit).

So after receiving such news and being hit by this unexpected blow, unfortunately the hard part wasn’t over with. As a mother hearing your child’s cancer is back for the 3rd time, well to be frank, it feels like the first time. The overwhelming feeling of what your reality is…let’s just say it SUCKS and it will scare the living daylights out of the strongest of people. So on to the hardest part of all of this…telling my little girl. I received the call at work, thankfully, as it allowed me time to have my moment of fear without these big blue eyes looking to me for strength when I needed a moment of weakness. After work, on my long drive home (1 hour), I had much time to think of all the things I would say, and to come up with all the possible scenarios of how she would handle this. As always she amazed me yet again! I was sitting in her room with her and Mimi explaining what the scans showed and what this means, and Bailey just looks at me and says “Mom it’s ok, I am ok and everything will be ok. I know you will find something for me and I know that God loves me more than you do…so everything will be fine. Do you want to play school with me now?”  Wow ok where does this little 9 year old girl find all this faith!!!! She then looks at me later on that night and says “Mom I could tell you were really trying not to cry earlier when we were talking about the new spots, but I just want you to know it’s ok if you need to cry but don’t cry because you are scared for me…I really will be ok you know. I just want to find something that works and gets me better soon because I don’t want this to get worse and I don’t want to die. I need to be here with you and I know you need me to and sometimes this is hard but everything always works out, we just need to pray harder ok.” Again, wow…this made me so happy and so sad all at the same time. I am overwhlemingly happy that my little girl has such big faith and really understands the reality of it all but at the same time I am sad. I am sad that I even have to have a discussion with my 9 year old that unfortunately despite our best efforts the treatments just didn’t work. I am sad that she has to think about the reality that she could very well die from this if we don’t find her miracle. My little girl should not have to think about these things and I should not have to explain such adult issues with her at this age…it is NOT FAIR! I want her to be innocent again like she was 2-1/2 years ago when we saw the commercials on tv about kids with cancer and we sent off our donation to help them and said a prayer of thanks that we were healthy. I want to remember what it is like to be bored with “normal” life! I want my biggest fear of her getting a fever to be how long she will be out of school and do I have enough children’s tylenol to last us the night, not the reality of does this mean she has infection and I have 20 minutes to rush her to the nearest ER so they can figure out what is going on before her fever spikes to a dangerouly high number! I just want my little girl to be a little girl again…I don’t want her childhood memories to revolve around what hospital in what different state we were at this time. I know I am whinning and I know that we have so much to be thankful for, but unfortunately every once in awhile I feel this way…I am human and I am her mommie!

So enough of that, my few mintues of whinning that I allow myself every now and again is over and it is back to reality 🙂 So thankfully we have an awesome GOD that hears EVERY SINGLE ONE of our prayers! Our little setback has opened so many doors and options that I was quickly seeing how this might just be a blessing in disguise! So as I mentioned in precvious posts, we really didn’t have any maintenance options for Bailey because she was clear and unfotunately there were no trials accepting NED patients. Well let’s just say these two new spots could possibly be the “foot in the door” we needed! Immediately I began emailing all the hospitals I had been contacting over the past several months and updating them on our news. I wanted to jump on this as quickly as we could. Thankfully our oncologist, Dr. Kanter, had the same idea 🙂 That woman is a GOD send! So needless to say we had alot of options to consider and I had alot of decisions to make! Well after several emails, another scan on Monday to prove what we thought we saw in the scans last week was actually what was there, countless prayers, etc etc….we have a PLAN!!!!!!

The PLAN: We will be leaving for Philadelphia as previously planned, July 10 – 12. We will be consulting with CHOP ( Children’s Hosptial of Philadelphia) and enrolling in their MIBG/Vorinostat trial to begin at the end of July. We do not have the specifics of those dates yet but we will find out more when we go on July 11th. With that being said, the oncologist from all three hospitals (Tulane, Michigan and Philadelphia) are very hopeful that this trial will clear Bailey again and we will be able to enroll her in a long term plan to keep her clear…all which can be done at home!!!! We will have to be at CHOP in Philadelphia for about 5 days when she is getting the MIBG treatment but will be able to come back home immediately once the treatment is finished and she will get to recooperate here for about 6-8 weeks before having to start the next step. To say we are happy with this plan is a huge understatement. This treatment will not be one that will make her sick or will cause pain…another blessing we are so grateful for.

With all that being said I will ask for lots of prayers as we embark on this next step. Please pray that the two spots stay the same until Bailey can receive treatment. Pray that the doctors will have a brilliant plan once this treatment is finished and Bailey will be able to continue having alot of time at home. Pray she will continue to look and feel as great as she has been. Pray for strength and comfort for our moments of weakness when reality hits…we know that GOD is on our side. I know HE will heal my little girl because HE has such great things in store for her. Thank you for your support and prayers as we continue along on this journey of life….NOTHING IS IMPOSSIBLE!!!!

 

One thought on “June 27, 2012…. FAITH and HOPE and PRAYERS

  1. The faith that the two of you have is AMAZING! God is so good. Praying for you.

    Love,
    Kellie

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