Kait: After my last post, Jake continued to be in pain from the mucositis so I called his nurse to see if we could take him to a hospital closer to home and get his blood counts checked. I took him first thing on Wednesday morning and the results were what we suspected- very low. So low that he actually needed to get a transfusion rather than get chemo the next day. I must have called his nurse, Nan, 6 times throughout the day trying to figure out if I should take him that day instead of waiting until Thursday, but, in the end decided to wait it out. Once again our plans were being changed and we had to roll with it because there is no other choice. I was disappointed that he wouldn't be able to stay on track for his chemo and worried that he wouldn't be able to go to the Big Apple Circus on the 10th. We had bought tickets and were hoping to surprise the kids. I keep telling myself to go with the flow, but as I had told Randy, I wasn't feeling very good, kind of down. I was tired of Jake not feeling good. I had spent every minute trying to do what the doctors and nurses told me to do to prevent mucositis, which is to keep him hydrated and try to get him to eat. The more he eats the faster his counts recover, and the more hydrated he is the better his G.I. tract will feel. As I type it out it doesn't seem like it would be that emotionally exhausting, but it really is. It is just awful to have your child be in pain and you are helpless to fix it.
Even though his counts were low, I thought he might be recovering because he said he was hungry and was asking for food. Arby's roast beef, specifically. Our nearest Arby's is about 15 minutes away but I am always willing to get him what he wants. Especially when he hasn't been eating much. I got the sandwich and was on the way to Sonic for a slush drink when he started screaming about it hurting to eat it. Before I could pull over he had balled up the sandwich and shaken it back and forth before throwing it on the floor. We have an old minivan with bench seats and I can promise you that there are pieces of bread and beef in every square inch of it now. Although I am not a fan of cleaning up food crumbs all over the car, I am glad that this incident happened. I finally realized that Jake was not just in pain, but he was angry. He was hungry and wanted to eat that sandwich and he couldn't. He was mad. Once I asked him if he was mad he calmed down. His emotion was understood and validated and I think it made him feel a little better. After that we worked together- me breaking off little pieces of food and him placing them on his tongue. This allowed him to avoid having to bite into it and hurt his gums. It makes me sad that he is having to spend this year of his life learning about himself and growing up while fighting cancer. He has been transitioning from toddler to kid for a while now. It just sucks that he learns how to vocalize anger from these experiences rather than something normal like having a toy taken from him at school.
I took him the next morning, his scheduled chemo day, to get the blood his body needed to feel better quicker. The low counts were making his heart work harder and made him feel tired and week. The nurse took a blood sample to check his counts and went ahead and accessed his port. He is getting so much better with that, it is amazing. Now I don't have to hold him down at all. He still cries and screams but he knows to hold still. He has recently told us that he doesn't like to be held down when getting his daily shot and afterwards he tells us that he is very brave and that he did a great job. His blood count results came back and we were shocked to see that they had gone from 900 to over 4000 overnight. It is incredible what medicine, prayer, and the miracle of the human body can accomplish. Instead of all of our schedules being turned upside down we were back on track for chemo and to be admitted that day. He did still need a transfusion but that didn't effect the parts of his blood that are count specific for receiving chemo. Jake has spent the past few days at the hospital getting his daily chemo and doing an excellent job eating and playing. He had an echocardiogram which showed that his heart is doing great. He is scheduled for a PET/CT scan tomorrow morning and we will pray for it to be clear once again. Tomorrow night the Wendy's in Grayson is having a fundraiser for our family and we are excited to be able to be there to see friends and meet new ones.
I wanted to end this post with a request for you to look through this website: https://www.1million4anna.org/ or at least watch this video about Anna:
I have been aware that funding for pediatric cancer research is very low since we found out that Jake has cancer. Until reading through Anna's page I had never been angry about it. Now I am. I am angry that these beautiful children are suffering, fighting, and in a lot of cases, dying because the scientists are not receiving the funding that they need to find better treatments. I don't know why, but Anna has touched me and made me understand that nothing will change if we don't step up and make it happen. The Basso family has lost their daughter and are still helping the world and I am so inspired by them. We have to do something about this.
:) xoxoxoxoxoxo
ReplyDeleteAnna's story changed my life. I stumbled across it when I found out my cousin went to school with Anna's older sister Patrice. I was given the opportunity to meet them and was so humbled and in awe of these wonderful people. They brought me to your family's story, and I am praying for you every single night. They help so many people and you are really great for spreading their story as well. Sending loving vibes your way
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