Quick update from Springfield, we are in the McDonald's parking lot getting ready to hit the highway for the long trek home. We stayed in the Ronald McDonald House the last two nights, so we thought it was appropriate to have Mickey D's for breakfast! :)
The oncologist called yesterday, they won't have the final pathology reports until Friday...stay tuned.
Our meeting with the specialist here in Illinois didn't go as we had hoped. Izzy has "moderate" OMS (out of a scale of 1-5 for severity it would be a 3). She will need a lot of treatment, Dr. Pranzatelli said to plan on two years of treatments. He is hopeful that it was caught early enough, so hopefully she won't have irreversible brain damage. We have a long road ahead, we are doing our best to accept it all right now. The goal is to have her symptoms in remission within 2 months...she is still having problems with her balance (ataxia) and sporadic eye movements (opsoclonus), as well as some tremors (myocolonus). Dr. Pranzatelli thinks these symptoms should be completely gone after a couple more rounds of steroids, IVIG treatments and a drug called Rituximab. When she is in remission the goal will be to prevent relapses, which can be triggered by infections in the body, even a minor cold can cause a relapse. So this is going to mean some pretty big lifestyle changes for us...we will need to do everything possible to avoid contagious sicknesses because her immune system is going to be very weak from the medications.
If you are interested in learning more about what OMS is, this website has everything you could possibly want to know and then some...www.omsusa.org
I'm trying to keep things in perspective, I met some families at the children's hospital who have a much heavier cross to bear. It's just so awful to see kids suffer, it's a parent's worst nightmare. Thanks for keeping us in your prayers, we need them!
This verse has been impressed on my heart since yesterday...
"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light." Matthew 11:28-30
We have a long snowy drive ahead of us today, so please pray for our safety. We are so excited to see our babies at home, we are missing them like crazy!
With love,
Kare & Tom
The oncologist called yesterday, they won't have the final pathology reports until Friday...stay tuned.
Our meeting with the specialist here in Illinois didn't go as we had hoped. Izzy has "moderate" OMS (out of a scale of 1-5 for severity it would be a 3). She will need a lot of treatment, Dr. Pranzatelli said to plan on two years of treatments. He is hopeful that it was caught early enough, so hopefully she won't have irreversible brain damage. We have a long road ahead, we are doing our best to accept it all right now. The goal is to have her symptoms in remission within 2 months...she is still having problems with her balance (ataxia) and sporadic eye movements (opsoclonus), as well as some tremors (myocolonus). Dr. Pranzatelli thinks these symptoms should be completely gone after a couple more rounds of steroids, IVIG treatments and a drug called Rituximab. When she is in remission the goal will be to prevent relapses, which can be triggered by infections in the body, even a minor cold can cause a relapse. So this is going to mean some pretty big lifestyle changes for us...we will need to do everything possible to avoid contagious sicknesses because her immune system is going to be very weak from the medications.
If you are interested in learning more about what OMS is, this website has everything you could possibly want to know and then some...www.omsusa.org
I'm trying to keep things in perspective, I met some families at the children's hospital who have a much heavier cross to bear. It's just so awful to see kids suffer, it's a parent's worst nightmare. Thanks for keeping us in your prayers, we need them!
This verse has been impressed on my heart since yesterday...
"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light." Matthew 11:28-30
We have a long snowy drive ahead of us today, so please pray for our safety. We are so excited to see our babies at home, we are missing them like crazy!
With love,
Kare & Tom
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