Hello, It has been quite a long time since I have updated. I finally found a quiet time I could sit down and write. Because we missed all the Holidays last year due to Chase being in patient we are trying to really take in every beautiful moment this year. Halloween was wonderful, after changing his mind about 50 times, Chase decided to go trick or treating as a ninja and Emma went as a Oriental Princess. Marc and I were so happy to see the kids running hand and hand to each house with such excitement. For those of you who have seen Chase at his most excited moments, you will be familiar with the little hop he does when he is excited. He is not even aware he does it, he just hops and hops in excitement. As he approached every house the special “Chase Hop” would come out and Marc and I could not help but smile. He wanted to walk the neighborhood and not ride in his stroller and as we expected he tuckered out rather quickly. Emma was very aware of him wearing out and never complained about leaving the festivities early so we could get Chase back to the car. In November we decided we would SPARK the Christmas festivities early and decorate the house. Yup, we decorated in November and it was awesome! Chase would say over and over that he could not be at home last year because he was in the hospital and was he was so excited to be a part of all the Christmas fun this year. Right after Thanksgiving we headed to Disneyland with the kids to soak up the Disneyland Holiday season. It was so bitter sweet for Marc and I... the last time we had been to Disney was right after Chase had relapsed. We were in California seeing multiple doctors at CHLA and in the midst of it all we wanted the kids to have a nice memory. Both kids were blissfully unaware of what was to come. Marc and I were very aware of ever hard decision we had to make, we knew that when we got home we would be kissing our boy while he drifted off to sleep for what would be described to us as a “trickier brain surgery than the first”. Those memories came back while we were in Disney this year, Marc and I talked about it....hard to believe it has already been over a year since our lives were turned upside down for a second time. My memories of treatment the second time were so much worse, it was truly a nightmare...and here we were in such a sweet spot with both of our beautiful babies. Chase has been doing well, he is doing really well in school. He excels above grade level in math, he is beginning to read and he is such a bright boy. This fact warms my heart and is reason to celebrate. Marc and I were aware that the host of treatments and surgeries could affect him neuro cognitively and we did not want Chase to struggle any more than he has already had to. The fact that he is so bright is beautiful...and oddly scary...both Marc and I say he is so smart, he has such an amazing personality...we desperately want to watch him grow old and see what he accomplishes. Yet, we are also aware that cancer does not take into account how bright he is, how full of life and potential he is....and most importantly just how much he is loved. Chase nor, any child with cancer deserves the horrendous hardship they endure..the countless amount of tears shed by a child who does not understand why this is happening, why they are sick, why they must live in a hospital...yet that is there reality. I struggle with how to explain this to others. Many say trust in God for his healing...when I worry it would seem as though I doubt. Yet, I remain strong in saying that my faith is strong. I speak with God every day, talk to him about the great parts of the day, yet I also cry out to him in pain and ask for his strength. Prior to having a child with cancer I would have said the same thing, “trust in God that he has already healed your son”. Yet through this journey I have learned that the realities of life and death, cancer and so many things I never wished to ponder are also a part of this journey. To say they are never there would mean I am not being honest with myself. The only way I can explain it to others is that when you LOVE someone so much...more than you ever think humanly possible, fear is real...not because you dont trust God but because we are human and our LOVE here on earth is all we know right now. My children are my world, they are my light, they are my LOVE and that is what makes the hurt and worry for them real. I begin my prayers ever night saying, “Lord I love them so much”. I have seen so many families with strong faith lose their children to this horrible disease, do I believe that God chose not to save them...no. There is a peace that has come with the knowledge that there is so much I will not understand and will not understand until I am standing in front of the Lord in heaven...maybe then I can ask him. After this long rigorous treatment with Chase I live with fears. Yes, I wish I could say that they are gone but they are a part of the pain that came from watching my son suffer and see him in moments that I never wish to remember...yet they are there. I beg God that this cancer will never come back, that it would NEVER again hurt one little hair on Chase’s head. I pray daily for for Gods mercy and grace. Now I also have fear with my sweet Emma, I watch her sleep at night and I beg God not to take me away from her again. I am just starting to mend my relationship with her, we are finally turning corners and healing.... I cant leave her again. This holiday season has been AMAZING, and sometimes when you are the highest is when you can fall the hardest...over the seemingly small things. I was Christmas shopping and I received a call from the oncology clinic to schedule Chase’s January scan. Yes, I knew he would have a scan in January...but the words made it a reality. I want to stay in our peaceful bubble of Holidays and smiles and the mere call broke me. I got off the phone and began to weep in the middle of the store. I called Marc and he is the only one who will truly understand how I feel when it comes to Chase and the reality that our peaceful 3 months of no scans is coming to an end and we will soon be right back in the thick of things. He understood my hurt and allowed me to cry on the phone and simply said, “I understand”. Sadly, Chase has been sick since Thanksgiving. He is not getting better he just has a constant cold. It is hard to watch, I wait every day hoping he will be a bit better than the day before but the cold just seems to go from kinda bad, to bad to worse. Right now he is pretty sick. He began to loose his voice and the virus seems to have traveled to his chest. Today, Marc and I talked about the pros and cons of going ahead and taking him to the hospital worried that it may be turning into pneumonia. Taking him in could also expose him to all the various yucky viruses that are in the Emergency room and that comes with its own set of risks. We have decided to allow him to rest and hope he starts to get better soon. As of now his MRI is scheduled for the 20th of January. Please pray for Chase and our sweet pea Emma. Pray that God continues to hold Chase in his healing hands and that his cancer will never return. Pray for his healing from this virus so that he is able to do his MRI. My love and blessings to you all.
Posted on: Tue, 23 Dec 2014 22:36:05 +0000
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