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July 22, 2013
My sweet little family spent the week of July 4th on vacation, the week before John Ryan was diagnosed with rhabdo. We had no idea there was an invader among us. We had just started to notice a swelling around his left eye, and an occasional upwards drift in his focus. We assumed he was developing a lazy eye and made an appointment with our pediatrician for when we got home. By the time we got to the appointment the swelling was much greater. The concern the doctor showed and the urgency with which he made an appointment with a specialist (we're talking same day) was alarming. 72 hours and several appointments later JR had an appointment at Duke Hospital for an MRI. You know how the story continues.
I'm not sleeping and the adrenaline has been waning so exhaustion is really starting to set in. It's making it hard to function and complete basic tasks, and it's also making me feel more depressed. I know I need to be strong and healthy for my baby, especially as a breastfeeding mother. Hopefully I will adjust soon. I think I'm still somewhat in shock and recovering from the trauma of last week. We all are.
We are gearing up for tomorrow. One of JR's doctors just called and told me to be prepared for JR to be admitted to the hospital tomorrow for the night. They are considering an alternate course of treatment than the 42 week chemo/6 week radiation and they will cover the details more extensively tomorrow. The new plan would be shorter (Hooray!).
It would be as follows:
12 weeks chemo (Duke)
6 weeks proton beam radiation (Philly)
12 weeks chemo (Duke)
This is 18 weeks less of chemotherapy treatment!
This plan would involve 4 doses of a "C" drug in addition to drugs "V" and "A" that he will get with every chemo treatment. This "C" is potent stuff and a known side effect is infertility. Years ago all chemo treatment was V-A-C. All males receiving the treatment became infertile. A study proved that using only "V" and "A" was equally effective in curing cancer, but treatment had to be for much longer. Chemotherapy is toxic to the body as it kills all cells, both unhealthy and healthy For the time that John Ryan is undergoing chemo he will be extremely susceptible to infection and infections can be very serious- all infections he contracts will result in a trip to the ER, admittance to the hospital, and a set-back in treatment. In short, less chemo is better!
A very new study (2010) showed that a shorter duration of chemo with a lower dose of "C" is as effective as a longer treatment of "V" and "A". JR would receive chemo treatments weekly of "V-A", and every four weeks he would receive "V-A-C" during the first 12 week chemo phase (4 doses of "C" total). With every "C" treatment he would be admitted to the hospital over night. Starting tomorrow.
We will sit down with a team of doctors tomorrow and have the opportunity to ask all of the questions swimming in our heads. I don't know what side effects this "low" dose of "C" may bring our infant. I wonder if this treatment has been studied on babies as young as JR. It's really overwhelming having to make such major decisions regarding the care of our sweet son.
We have been moved to tears by the outpouring of support from our loved ones, distant friends and complete strangers. God is at work and He knows how to make good in all. I am trying hard to lean on Him and trust Him.
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Lifting your sweet little JR into Jesus's powerful healing arms. May JR feel no discomfort or have side effects as Jesus holds him tightly. I pray for strength and comfort for you and your husband and divine guidance for the entire team of care givers minds and hands. Amen.