The Six Weeks
To be honest, I do not have the emotional energy to really go in depth tonight. Looking back just really hurts, but it also helps to let it out.
Typical Week - Mon -Fri Radiation/Anesthia & Sun - Sun Chemo
Radiation - The sun has not risen yet. I still see the big dipper in the moonlight sky. It is 5:00 AM and I have to give Josiah his anti nausea medicine called, Zofran. As I walk in his room, I see how peacefully he sleeps. I stare at his little face and grieve. I feel so sad that he has to walk down a path that I would have never ever chosen for him to walk through. At times I feel so much pain that I start to hyperventalate. After I gather myself, I proceed to wake him. I say "Hey buddy, good morning, it's time to go get your sleepy medicine (which is the anesthia), so take your Zofran (this medicine prevents him from vomiting due to the radiation). Josiah wakes up and he takes his pill without any hesitation. Once he finishes he gets out of bed and tells me "Mom I am ready for my sleepy medicine." So, he walks to the living room and waits patiently for Dan and I to get ready.
We leave the house at 6:15 AM so we can be at Bayfront Hospital for his radiation by 7:00 AM. Radiation goes like this: It is waves that destroy or "burn" cancer cells as well as healthy cells. Because Josiah has to lay perfectly still at all times, the doctor puts him under anesthia every time he gets radiation. Once he lays on the "bed" thing, his little face is covered with a hole covered mask that marks where the radiation is to go. The procedure only takes about 5 minutes, but because of the anesthia there is a pre and post process. Dan and I go to the waiting area and we just talk or sit quietly. When the procedure is finished, Josiah is taken out of the room and back to his normal hospital bed. There the nurse and the sleepy medicine doctor wait for him to wake up. When Josiah comes out of the anesthia he gets out of it very mad. So, they staff always makes sure Dan and I are in the room before Josiah wakes up.
Steroids - Well the steroids made Josiah gain 21 pounds which is a huge deal for a little kid. He went from 39 lbs to 60 lbs. His little face was perfectly round and his stomach was big. Even though these steroids have such awful side effects, it is a blessing in disguise. This medicine prevents his brain from swelling. You see, the tumor puts pressure on the surrounding areas and the brain has no room to swell at all. Anyway because of the weight gain Josiah could not move around much. I had to treat him almost like a baby. Giving him a bath I would lay a towel in the bath tub and gently lay him on it. I would have to sponge bath him because his port could not get wet (port is a device they put in his heart so they can give him any IV meds, transfusions, or just be able to take blood. It has two tubes that go in the arteries and the tubes are connected to a ball like device that is just under the skin. That is where the nurses insert the needles, which are connected to an outside tube, where the meds go through, to get into his body.) This port was high maintnance, you could not get that area wet, period! Not only was the weight a hard issue but his mood swings were terrible. He would be so angry and he would scream and scream with anger. I had to tell myself "it's just the meds". To be honest those fits really got the best of me. I would just cry and cry.
Okay, I can't finish this, but I will go ahead and post it anyway. It hurts remembering all this.
Typical Week - Mon -Fri Radiation/Anesthia & Sun - Sun Chemo
Radiation - The sun has not risen yet. I still see the big dipper in the moonlight sky. It is 5:00 AM and I have to give Josiah his anti nausea medicine called, Zofran. As I walk in his room, I see how peacefully he sleeps. I stare at his little face and grieve. I feel so sad that he has to walk down a path that I would have never ever chosen for him to walk through. At times I feel so much pain that I start to hyperventalate. After I gather myself, I proceed to wake him. I say "Hey buddy, good morning, it's time to go get your sleepy medicine (which is the anesthia), so take your Zofran (this medicine prevents him from vomiting due to the radiation). Josiah wakes up and he takes his pill without any hesitation. Once he finishes he gets out of bed and tells me "Mom I am ready for my sleepy medicine." So, he walks to the living room and waits patiently for Dan and I to get ready.
We leave the house at 6:15 AM so we can be at Bayfront Hospital for his radiation by 7:00 AM. Radiation goes like this: It is waves that destroy or "burn" cancer cells as well as healthy cells. Because Josiah has to lay perfectly still at all times, the doctor puts him under anesthia every time he gets radiation. Once he lays on the "bed" thing, his little face is covered with a hole covered mask that marks where the radiation is to go. The procedure only takes about 5 minutes, but because of the anesthia there is a pre and post process. Dan and I go to the waiting area and we just talk or sit quietly. When the procedure is finished, Josiah is taken out of the room and back to his normal hospital bed. There the nurse and the sleepy medicine doctor wait for him to wake up. When Josiah comes out of the anesthia he gets out of it very mad. So, they staff always makes sure Dan and I are in the room before Josiah wakes up.
Steroids - Well the steroids made Josiah gain 21 pounds which is a huge deal for a little kid. He went from 39 lbs to 60 lbs. His little face was perfectly round and his stomach was big. Even though these steroids have such awful side effects, it is a blessing in disguise. This medicine prevents his brain from swelling. You see, the tumor puts pressure on the surrounding areas and the brain has no room to swell at all. Anyway because of the weight gain Josiah could not move around much. I had to treat him almost like a baby. Giving him a bath I would lay a towel in the bath tub and gently lay him on it. I would have to sponge bath him because his port could not get wet (port is a device they put in his heart so they can give him any IV meds, transfusions, or just be able to take blood. It has two tubes that go in the arteries and the tubes are connected to a ball like device that is just under the skin. That is where the nurses insert the needles, which are connected to an outside tube, where the meds go through, to get into his body.) This port was high maintnance, you could not get that area wet, period! Not only was the weight a hard issue but his mood swings were terrible. He would be so angry and he would scream and scream with anger. I had to tell myself "it's just the meds". To be honest those fits really got the best of me. I would just cry and cry.
Okay, I can't finish this, but I will go ahead and post it anyway. It hurts remembering all this.
posted by Maria | 8:54 AM
4 Comments:
Please be encouraged, Maria. You are a 'woman of noble character.' I cannot imagine the hell you have gone through, and my prayers are with you now.
I would also like to encourage you... from a mother's perspective. Have you considered writing a book (sort of what you are doing now?). I imagine it would help other mother's in similar circumstances. Just a thought. Your writing is so raw and clear (even people like me who don't understand all the termonlogy can get their minds around it). It may be an avenue to explore to help raise funds for research??
Marie, I hope that by sharing your hurts and pain that there is a little bit more room in your heart for the peace of God to reach you. It must be an everyday struggle but we all believe with you & pray that your faithfulness will be rewarded soon. We believe!! Thanks for sharing.
Maria!My heart is so full after reading your post but at the same time my heart aches and I am in tears as well for you and your baby. I can't fathom what you are going thru.
I was thinking the same thing that Jamie wrote about you writing a book just like your post. The way you express yourself puts the reader right beside you.
You are an amazing Woman and an inspiration to all of us. I love you so much. I am also in agreement with Tiffani in her comment. My prayers are continuously with you.
I agree with everyone. As difficult as it is to write all this stuff. I believe it would be a healing for you, if for nothing else, to write a book.
You are so precious.
Even though, I'm miles away, I'm still by your side always.
I love you chica!
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