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Baby Nicholas has been much better in the last few days. His counts on Thursday ANC 910, platelets 150 and Hgb (red blood) 10.4 so tonight is his last dose of cycle 5 chemo. I have such a sense of relief when I get to throw away bio hazard bags that once held chemo. He will have a week off of chemo for counts to recover and then we enter into our last cycle of chemo. I can't believe how quickly the last 5 months have gone by ..... this time of year gives me anxiety ..... I lost my most wonderful grandmother 2 years ago today and I miss her so very much. She and I shared a beautiful relationship and I will cherish my memories of her always.
It been an interesting week. Some of you may have seen the video I created below. Mr. John Rich contacted ALSAC, which is St Judes fund raising department and asked if he could legally use my video. How crazy is that, but what a blessing !!!! So he had to remove it from his site until all the parents give approval for him and St Jude to use it. Crazy I can see I was just a vehicle in Gods plan for it to get into the hands of someone that will reach far more people than I ever could.
So we were blessed today "AGAIN" by someone who has really followed us through our journey .... who has gone so out of her way so many times .... thank you so much Kim for sending these adorable baskets for the boys. Christian used his for the egg hunt at church and God willing, next year Nicholas will use his too! They were thoughtful and precious.... thank you for your friendship and for caring so very much. Even your kindness has changed me ... I just wanted to thank you again.... it has meant so much. It puts so many things in perspective. Thank you.
This was Baby Nicholas Easter Sunday outside, for a moment my heart was happy taking him outside and then I realized it was so bright he needed a hat. I went in and grabbed a hat, the hate made me stop and fall to the ground .... it was a gift given to us from the Bailey Family (Rykens Family) I couldn't stopt thinking about all my friends that lost their children. Another holiday for families I love to "GET THROUGH", its wrong .. and we need cures... it was hard to be happy when I realized this.
My week got worse, the following day a precious 2 yrs old in Miami that was on my protocol is on hospice and I found myself begging God to help ..... not even 24 hours later .... a mother from my group emailed me on Easter and I told her to call me ... she's ready to give up and today her meeting with Neuro - Oncology left her posting only that they are too going on hospice .... this is a child under 5 ....my mind is spinning and God is protecting me from getting upset over Nicholas .... but I am in prayer and I ask you to be in prayer for John and Euji ..... I don't understand how many babies I have watched fallinto the grips of cancer and MOST do not win .... the statistics are just not accurate ... too many children are dying and so many people will read this and say I will help ... leave the page open and do NOTHING .... maybe the next time I post we lost anyone precious baby you might, just maybe donate. This is not intended for the ones that do, but people I love haven't taken two minutes to undestand this .... Its upsetting .... I just want these chidlren to have a chance and I will advocate for the rest of my life .... please people the word HOSPICE and babies it so wrong ....
God,
Grant my friends the wisdom to make choices no parent should make .... please father have mercy and if you will provide miracles .... we know you are ABLE.... please Father .... please watch over these families.