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!!!!

 

June 22, 2012… Not so good news for my princess :(

Today will be short and sweet as I am struggling with the recent news we received. Bailey’s scans from last week show her cancer is back. She has two new spots which means the low dose chemo she was on to keep her clear did not work. I am reaching out to three different hospitals trying to find the best possible treatment plan for her…I will keep you all posted once I know what will happen next. She is in great spirits as always, being the strongest and bravest little girl ever. We will NOT give up and we have FAITH that God has something in store for her… He will heal her! NOTHING IS IMPOSSIBLE!

My Pretty Little Princess

My pretty little princess
she’s my heart and soul, you know.
A child so young and innocent
to face so many of life’s unkowns

Every time she smiles,
her spirit melts your heart.
Determination, strength and courage
have set her far apart.

She has so much wisdom,
she’s wise beyond her years.
She never gives up this fight for her life,

Regardless of her pain and tears

 

Her smile lights up the room,
She has this special glow.
She’s more than my pretty little princess,
She’s an angel on earth I know.

She has never met a stranger,
and by many she is loved.
She has angel friends here with her now,
and those who watch her from above.

God sent this special princess to me
to teach me many things.
To live, laugh, love, with all my heart
and how to be an angel without wings.

 I love you Bailey…Love, Mommie

June 14, 2012… Just keep swimming, just keep swimming :)

Geez Louise over a month…wowzas!!! So let me begin by saying sorry that I haven’t posted. I guess I didn’t realize how busy we have been and how much we are enjoying every second being at home! So much has happened since my last post so forgive me if this is a little lengthy. First let me begin by saying we went on our cruise and it was absolutely wonderful!!! We decided to surprise the kiddos and not tell them any of our plans. To see the excitement on their faces was priceless! We left on Saturday, May 26th out of the Port of Galveston. When we arrived at the port and the kids saw the ship, let’s just say a pair of earplugs would have come in handy about that time lol! To say they were ecstatic is an understatement…and of course we were overjoyed that we would no longer have to hear the most dreaded vacation question “Are we there yet?” lol! On our cruise we had stops at Progresso, Yucatan and Cozumel! We made the most of our trip by frequenting the pools, water slide, endless ice cream, desserts, foods, etc. We also decided that we all wanted to swim with the dolphins so at our stop in Cozumel we did just that. Needless to say not everyone was so thrilled with dolphins once we were actually in the water with them. Bailey and Seth decided that hanging on to Cody for dear life seemed like the thing to do, not at all what we expected from them but as we have learned we always expect the unexpected! They eventually stopped screaming at some point during the experience although Bailey made sure to tell me to keep that fish away from her…what an experience! Anyways if you are reading this and see her at some point, please, please, please do NOT tell her I put this on here…she would NOT be happy with me! Let’s just say when I show people the photos of us with the dophins… petting them, kissing them, dancing with them, etc…I get the look of “mom are you seriously showing the pictures with me crying the entire time and making a sour face in the background”…so while we all think it is a funny memory, Bailey and Seth are just not there yet lol! Aidan on the other hand LOVED it! Anyways we had fun and we are so thanful we were able to make this memory together as a family!

Upon returning from our vacation, I tried calling Sloan Kettering in NY to see what the plan was for Bailey. Needless to say I didn’t get a return call until Monday at 4:15pm telling me that the trial has been pushed back yet again and now the new start date is in August. With that being said, Dr. Basu suggested that she continue getting chemo every two weeks until then. As we were talking and figuring out the schedule we realized that in order to keep things on course Bailey would have needed to start chemo that day which of course was impossible since it was now 4:30pm. So I then had to start making phone calls to Dr. Kanter at Tulane to see if it was possible to get us on the schedule for the remainder of the week. Of course Dr. Kanter was accommodating as always, because she is that awesome, and Bailey was able to start on Tuesday. With that being said, the overall dosage of the chemo has to stay the same so they decided to divide the five day regiment into four days to make sure she got the full dosage….little did we know….my poor little girl was so sick last week. It has been awhile since she has been that sick and my heart was broken for her. On one of the days she kept throwing up so much that it took 4 nausea medicines and an IV dose of Benadryl to make her sleep in order to stop it. Let’s just say I was not a happy mommie that my little girl had to endure this because of poor planning on someone else’s part…of course she is better now and mommie has calmed down a bit but regardless I was in mother hen mode! Thank God Mimi is there for us every step of the way because there is no way I would be able to drive back and forth to New Orleans everyday, while still working remotely from the hospital, trying to entertain my little girl and trying to catch puke as I am driving! Mimi we love you and appreciate everything you do for us!!!! I know I tell you thank you everyday but seriously THANK YOU!!!!

So here we are again, another week of chemo down and we are on our two week stretch until the next time. We are going to New Orleans next week to get a couple of scans done just to be sure the chemo is doing it’s job and keeping my little lovebug clear. If all is clear, as I am faithfully believing it will be since God has healed her, she will continue getting more low dose chemo until August when it is time for her maintenance treatment to start. We are also heading up to Philadelphia  in mid-July to CHOP (Children’s Hospital of Philadelphia) to meet with the neuroblastoma team there to discuss second opinions,etc. I am trying my best to find any maintenance options that are promising and will allow us more time at home. So hopefully they will have good news to share with us when we go :)

As always thank you for the prayers and support. This is a relentless disease with no cure but our faith along with the faith and prayers of all our supporters will prove those statistics wrong. My little girl will surpass the 30%  five year life expectancy mark we were given back in March of 2010. There is not a doubt in my mind that God is able…He is able to heal Bailey, keep her clear and allow her to live a long and prosperous life with an amazing testimony of His love and power.

Please keep our dear friends the Romines in your prayers. Little 3 year old Henley is fighting the same cancer as Bailey. Her family recently got devastating news that every family dreads…the treatments didn’t work and there are no other options. Her family was sent home with no plan and the reality that this disease is taking over her little body. They are an amazing family and even though faced with such devastating news, they are not giving up hope that God will come through with a miracle as only He can do. They are a family that is very dear to our hearts so please say extra prayers for them and all of our special friends we have made along this journey.

Also we will be having another blood drive for Bailey in July so please keep this in mind! I do not have the dates yet as we are trying to get a building, etc but as soon as I know I will post on here so everyone can attend. We will be selling hamburgers again as well as Bailey necklaces, bracelets, t-shirts, baked goods, etc.