Haylie Update - Sept 9
I haven’t given an update in about a week. Haylie had another spinal tap on Thursday with another infusion of chemo. She has done remarkably well these past few weeks, but the chemo is catching up to her again and she started to get very nauseous, tired and feeling just yucky the last few days. She has really missed her friends and we were so happy to have 2 good friends visit her on Thursday.
I’ve been debating about whether to post this or not. I’ve always tried to post pictures of Haylie smiling and be positive, but the truth is, there are some really tough days. Because September is national childhood cancer awareness month, I thought I would share some pictures of the tough stuff too. There are so many kids that are suffering from cancer and many more will be diagnosed each year. I pray that we can find a cure so that no child and no family will have to go through this battle. Sadly, only 4% of cancer funding goes to childhood cancer research. I believe our kids are worth a lot more than 4%. Last year, I had no idea September was childhood cancer awareness month and now we are becoming experts on things I never dreamed about.
It is difficult to watch your child have to endure so much. It was super tough to watch her long, beautiful hair fall out and I couldn’t do anything about it. I never thought I would know so much about blood and transfusions. I never thought I would need to be trained on how to give my own child chemo shots at home. I never thought I would know how to read blood test results and know the names of all the chemo drugs she has to take and their awful side effects. It’s not fun to have to hold her hand while she throws up for the 5th time that day. It’s sad to watch her struggle to walk and not even have the strength to climb the stairs to her bedroom. It’s hard to tell her she won’t be able to get in lake water for another 3 years for risk of infection. It was difficult to cancel our cruise and all of our vacation plans and instead spend the summer in the hospital. It’s hard to miss out on normal life while she has to be home bound because she isn’t well enough to attend public school. I ask that you pray for the many many children and families that are all going through this battle right now.
Through this battle, I’ve always told Haylie to find something positive, so I also want to share some encouragement. I also never knew how strong Haylie could be. I never knew how amazing people around us would be and how they would reach out and offer to help. We have been blessed by so many prayers and so much support. People we don’t even know have sent gifts and told us they pray for Haylie daily. We are forever grateful for all the love and support people have showed to us.
It’s been tough but I know there are many people out there that have it much worse than we do. We still have so much to be thankful for. God continues to go before us and is our strength. There is much more to Haylie’s story that is yet to be written. He can make beauty from the ashes.
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| Picture where her hair started falling out in big chunks. |
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| Taking it like a champ |
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| Love this girl. |
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| The port access they insert in her chest each week. |
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| Just finished another spinal tap |
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| Giving herself heparin after an infusion |
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| Getting ready for another spinal tap |
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| Getting a shot of chemo at home. |
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| Just got out of surgery to get her port placed. |
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