6 years, 77 new adult cancer drugs.
77 years, 3 new childhood cancer drugs!
Our Hearts Ache
Just another day in the life of Leukemia
Just another day in the life of Leukemia. High Temp means ER. Doctor calls ahead and we head right back when we get there with mask on face. Fielding all the questions of medications, when the last clinic visit was, so on and so on. From there, it is time to get port accessed. This never gets easier. How can you get used to a one inch needle on the end of a butterfly coming at your chest? How do you even get used to a port in your chest all the time? It just becomes your new normal but sometimes it just is plain scary. Restraining a child is not something you get used to.
Once port is accessed it is time to flush the port and take blood sample. Waiting on pins and needles for the ANC counts. Are they high enough to fight an illness? Or, will we be admitted? Then you have to wait days to find out if the port is infected. Oh how traumatic that would be. Once counts are confirmed good we move into treatment. Tylenol and antibiotics, the slow drip begins. The good news, we get to come home after all this is complete.
What now? Do we home school from here? We certainly do not want to put her in situations where she has germs. Protect her too much, she does not have the chance to build immunity. The count down is on, only six months left. We are not alone though. With every week that goes by we feed new families from Hearts for Hadley. It is a constant reminder that, not only are we not alone, others are just beginning the journey. It is just another day in the life of Leukemia.
Hospital Shuffle
Hadley’s ANC number dropped to 50… She will be in the hospital for a few days. She is in the best place possible and we are so thankful for East Tennessee Children’s Hospital, the nurses and doctors. They are monitoring her and hopefully her immune system will bounce back. This is just the reality of Leukemia. There are so many children that are far less fortunate for these hospital stays are more commonplace. We are not only in good hands at ETCH but we are also in the hands of God. Together, much is possible.
Update December 7th
ANC is 55. Hadley is fighting this virus but we need her white blood cell count to go up. Until then, she lives in the hospital. It is a dose of reality when you go from healthy one day, to not the next. While it is a waiting game, we have the joy of family, friends and church around us. We must be thankful for that, some are not so fortunate. This is the foundation of what Hearts for Hadley stands for. To carry forward these people that are around us and surround others that are not so fortunate.
It is tough going through back surgery and while recovering to deal with this. Not be able to spend the night with your child. To leave the hospital at night. But, we have so many around us and we choose to make the best out of any situation. Go out today and find joy, be kind, love more, be forgiving and give everyone a chance. You never know, something good can be waiting right around the corner.
Golf Tournament Coming
With the Hearts for Hadley golf tournament coming up it has got me thinking. Thinking more and more about the families we feed. Not just feeding them but the years of treatment after we feed them. Beki and I have been tremendously blessed in so many ways. Leukemia has not stopped Hadley, she is strong and she is unstoppable. This is not the reality of some. Some of the families we feed continue to struggle in so many ways. Children that do not deal with treatment well. Children that struggle, that cannot be children.
We must forge ahead and feed the families but we must also continue to pray for those families we feed. The need is not over after we feed them.
Our hearts go out to all the families we feed and we commit to continued prayer for those families.
Stop and listen because when you do, you might just find something beautiful.
Jonathan Brooks
Missing school today
Well, after a big weekend in Greenville and school this week we are blessed. You are always going to have the sick days due to medication and this is one of those days. Throwing up and no sleep means no school today for Hadley. She has been a trooper though.
We pray that next week when they check her numbers that they remain high enough to stay in school after increasing her dosage of chemo.
Love for Luki
To all of our praying friends… I ask that you cover this family in prayers the way you have for us. This is a local family facing quite a battle. You can read their story here. Blood donations can be made in his name (Lucas Jones) at Medic. And, a Go Fund Me account has been set up to help with the medical expenses. My heart breaks for them as the memories come flooding back. LoveforLuki
None of us are immune
Well, this Halloween was better than the last. Hadley made it an hour at the church “Trunk or Treat” but just could not do the next day for Halloween. When you miss school and Halloween, we know she just does not feel good. This is not just about one little girl, this is also about all the other children who miss Halloween because of Leukemia. We hope and pray that everyone had a great Halloween and we know that next Halloween will be a great one.
None of us are immune to a child getting sick. It is never easy for any parent to watch a child throw up and be scared. We all deal with this being a parent. It is one of those weeks for Hadley, she just is having a rough week. Chemo, steroids, antibiotics and the list goes on. What do you do when a little girl says “my brain hurts mommy, my body hurts? But, this is not just about Hadley…. We pray for Hadley but we also pray for all the children that are dealing with any sickness (big or small). We also pray for the parents that are at the side of the children. It takes a village but it also takes faith. God gave us so much but all he asks for is faith.
1 John 5:13
I write these things to you who believe in the name of the Son of God so that you may know that you have eternal life.