About Me
- Hope Foley
- Born in Atmore, United States
- Wife & Mommy. I have a wonderful husband who loves me deeply and three great kids. I believe in my Creator who guides me everyday. My favorite interest are stage/theatre, music/singing, antiques and art.
Wednesday, August 31, 2011
September is Childhood Awareness Month
Monday, August 29, 2011
Sum of last weeks visits
I don't really want to or have time to go into details on the specifics of our meetings last week. And most of the time when I read a blog of update, I want to get to the meat of it all, not necessarily the entire days outline of events, not to say that anyone shouldn't write what they want to on their own website.
Thursday Ivee had a GI Contrast study done (to prove the existence of her paraesophageal hernia), and boy was that fun...she said sarcastically! The radiologist did say he saw it there. The surgeons are not certain they want to do anything to repair it, being that Ivee's gastric (mic-key) button has her stomach "anchored" to her abdomen wall. They said they might want to possibly address the "heaving" with a g-j tube, which goes from her g button site to her intestine. It would depend on what the endoscopy showed on Friday.
So, Friday we prepared for the endoscopy (same freaked out little girl about having to have one more thing done). The procedure went fine. Dr. Whitington came in after to discuss his findings, that Ivee's esophagus and stomach along with her nissen fundoplication all looked fine and in tack. The hernia having nothing to do with the heaving, he says, put that aside...this means that Ivee's heaving attacks are in his opinion all do to neurological damage. Not what I wanted to hear, but relief at just having an answer. So, in other words, there is one darn thing I can do or have done for Ivee to relieve her of the heaving. It is something that we will have to continue to live with, for however long, praying that God not only heal her of cancer, but that he heal the inside of my little ones head.
Dr. W does want to try to get Ivee on a medicine to increase her appetite so that we can continue to help her want to eat by mouth and in encouraging her to do so, perhaps, we can alleviate the aversion she has to food, textures and all things that do make her have a strong gag reflex.
As for surgery, my thoughts are, if this is neurological, what good would it do? Now, if she ever looses the g button (due to the fact that she's eating), then they will probably need to fix the hernia. But, if the hernia isn't the cause or it's not putting her in danger, then I guess we won't be doing anything about it.
I'll should hear from someone in surgery this week.
Still praying for my Ivee and her friends. Today Aaron B. and Isaiah have MRIs. Praying for great results. Nicky had a good MRI report Thursday. Lucy, Allison, Justin, Ronan, Haley, and so many others are still enduring chemo and treatment. Continue to lift them up in prayer!!! And praying for continued healing for Brandon, Levi, Olivia and so many others!
Thursday Ivee had a GI Contrast study done (to prove the existence of her paraesophageal hernia), and boy was that fun...she said sarcastically! The radiologist did say he saw it there. The surgeons are not certain they want to do anything to repair it, being that Ivee's gastric (mic-key) button has her stomach "anchored" to her abdomen wall. They said they might want to possibly address the "heaving" with a g-j tube, which goes from her g button site to her intestine. It would depend on what the endoscopy showed on Friday.
So, Friday we prepared for the endoscopy (same freaked out little girl about having to have one more thing done). The procedure went fine. Dr. Whitington came in after to discuss his findings, that Ivee's esophagus and stomach along with her nissen fundoplication all looked fine and in tack. The hernia having nothing to do with the heaving, he says, put that aside...this means that Ivee's heaving attacks are in his opinion all do to neurological damage. Not what I wanted to hear, but relief at just having an answer. So, in other words, there is one darn thing I can do or have done for Ivee to relieve her of the heaving. It is something that we will have to continue to live with, for however long, praying that God not only heal her of cancer, but that he heal the inside of my little ones head.
Dr. W does want to try to get Ivee on a medicine to increase her appetite so that we can continue to help her want to eat by mouth and in encouraging her to do so, perhaps, we can alleviate the aversion she has to food, textures and all things that do make her have a strong gag reflex.
As for surgery, my thoughts are, if this is neurological, what good would it do? Now, if she ever looses the g button (due to the fact that she's eating), then they will probably need to fix the hernia. But, if the hernia isn't the cause or it's not putting her in danger, then I guess we won't be doing anything about it.
I'll should hear from someone in surgery this week.
Still praying for my Ivee and her friends. Today Aaron B. and Isaiah have MRIs. Praying for great results. Nicky had a good MRI report Thursday. Lucy, Allison, Justin, Ronan, Haley, and so many others are still enduring chemo and treatment. Continue to lift them up in prayer!!! And praying for continued healing for Brandon, Levi, Olivia and so many others!
Wednesday, August 10, 2011
Medical Update
Sorry, just now getting to sit down and give a brief update on Ivee's medical visits.
1. GI: Will do an endoscopy on Ivee in a few weeks to look at her esophagus and fundoplication (stomach rap) to see if it is too tight or okay. (hopefully we'll get to the heaving issue by process of elimination.
2. Endocrinologist: He said, yes she is small, but she was small when we brought her to St. Jude in 2007. She is in the 2 percentile. No surprise there. He said that over the last 4 years her bloodwork and test have looked good. In some cases where radiation has affected the petuatary gland, you can't necessarily tell until they are older, which is why she hasn't needed to see anyone until now. Even now, though, at this point she is looking okay, that is the thyroid, blood levels, and adrenals. As for her ovaries, thanks to chemo as well, we won't really know if they are affected until she reaches puberty (about 12).
3. Surgery consult went well. First, he needs visible proof of the paraesophageal hernia, so the GI doctor will have to run some test to confirm this. Second, in examining her stomach, he noticed the bulge above her mickey button/naval and said that she may also have an abdominal hernia. So, we are perhaps looking at two hernias. The ideal situation would be to do a laparoscopic view and see if he can repair them that way. If there is two much scar tissue from the previous surgeries in her abdomen, he would have to cut her 6 inch incision open and again to repair it that way. Of course, laparoscopic is much less evasive and faster recovery time. Third, I made a comment about her mickey button being a bit tight (in my eyes). He confirmed to me that she needed a bigger one. The one she has is usually used on 1 year olds. Ivee is the size of a big three year old, so, once again, I'm not surprised that this was somehow missed here back at home with the old doctors. I will continue to keep an eye on it from now on an make note if I ever need a surgeon at St. Jude to look at it.
4. On the way home from Memphis, we kept her appointment with her orthopedic in B'Ham. This was the only part of the trip where I felt the most positive news. She said Ivee's xray looks great, her gate is great and she heals unbelievably well! That part I already knew. She heals so well, that she had to have 4 hickman line surgeries just because her body refused them and would push them out, healing! If nothing else, I can say my baby girl has a little Wolverine in her. Now, if only it would fight off this cancer and keep that out of her body!
We'll be returning to Memphis the week of August 26th for the procedures in GI. I wanted her to get in school for at least a little while. Her next MRI is scheduled for September 27th and I believe that we will probably end that visit with a surgery to repair her stomach. Prayers and more prayers.
1. GI: Will do an endoscopy on Ivee in a few weeks to look at her esophagus and fundoplication (stomach rap) to see if it is too tight or okay. (hopefully we'll get to the heaving issue by process of elimination.
2. Endocrinologist: He said, yes she is small, but she was small when we brought her to St. Jude in 2007. She is in the 2 percentile. No surprise there. He said that over the last 4 years her bloodwork and test have looked good. In some cases where radiation has affected the petuatary gland, you can't necessarily tell until they are older, which is why she hasn't needed to see anyone until now. Even now, though, at this point she is looking okay, that is the thyroid, blood levels, and adrenals. As for her ovaries, thanks to chemo as well, we won't really know if they are affected until she reaches puberty (about 12).
3. Surgery consult went well. First, he needs visible proof of the paraesophageal hernia, so the GI doctor will have to run some test to confirm this. Second, in examining her stomach, he noticed the bulge above her mickey button/naval and said that she may also have an abdominal hernia. So, we are perhaps looking at two hernias. The ideal situation would be to do a laparoscopic view and see if he can repair them that way. If there is two much scar tissue from the previous surgeries in her abdomen, he would have to cut her 6 inch incision open and again to repair it that way. Of course, laparoscopic is much less evasive and faster recovery time. Third, I made a comment about her mickey button being a bit tight (in my eyes). He confirmed to me that she needed a bigger one. The one she has is usually used on 1 year olds. Ivee is the size of a big three year old, so, once again, I'm not surprised that this was somehow missed here back at home with the old doctors. I will continue to keep an eye on it from now on an make note if I ever need a surgeon at St. Jude to look at it.
4. On the way home from Memphis, we kept her appointment with her orthopedic in B'Ham. This was the only part of the trip where I felt the most positive news. She said Ivee's xray looks great, her gate is great and she heals unbelievably well! That part I already knew. She heals so well, that she had to have 4 hickman line surgeries just because her body refused them and would push them out, healing! If nothing else, I can say my baby girl has a little Wolverine in her. Now, if only it would fight off this cancer and keep that out of her body!
We'll be returning to Memphis the week of August 26th for the procedures in GI. I wanted her to get in school for at least a little while. Her next MRI is scheduled for September 27th and I believe that we will probably end that visit with a surgery to repair her stomach. Prayers and more prayers.
Tuesday, August 02, 2011
Prayers.....
I'm updating on the eve of our next trip to Memphis. As we are returning for issues non-cancer related, it doesn't make the trip any less important/stressful/long/hard....all those things. I know this isn't necessarily a website for my thoughts and feelings on all things in our family, but mostly that is because my "family" blog became my "what's going on with Ivee now" blog with a little bit of family thrown in. But, as I am farther along in this journey, especially more than most of my cancer friends, I have a less "busy" medical schedule and we are in our new normal. Our normal is a life with therapies thrown in, tube feedings, moments of heaving, not wanting to walk and eat and occasional doctor visits (usually once a month), but mostly kids, housework, cooking, entertaining, and finding ways to "give back" or minister. Yes, everyday I must deal with Ivee's "medical" side and the deficits of her cancer. It has been this way for 4 years, 8 months and 14 days. Life has never been put on hold for us to just stop and breathe and take it all in. Tonight I was taken back and reminded. Let me share briefly.
I leave for Memphis tomorrow. I just got home Saturday from a trip with my sister and our 6 kids to visit the other sister in Jacksonville, FL, whom we don't get to go see very often. I knew if we were going to try to get there, it would have to be before school starts on August 15th. We had a wonderful time, even took the kids to Seaworld, and Ivee had a blast...well worth the trip. On the way back Saturday, I was looking forward to seeing Emmett. 2 1/2 hours away from my sister's house in P'Cola (where I would take them back to) we got a phone call from my B-in-law, who had been in a car accident. So, getting back home wasn't all we had hoped for, with daddy standing on the front porch waiting for us to drive up, like he does many times when he misses us. Instead, he drove to P'Cola and took the BIL home for my sister. (Yes, he is okay, just a sprained knee). I told my sister, welcome to the Foley family adventures. You never know what could be coming next or make you change your plans. Well, I knew a week before Jacksonville that Memphis would have to happen the week after that trip. It is tiring to do one trip then turn around and do another, but St. Jude was able to get it all done for us and all in one day and before school starts!!! So, we go with the flow. I had planned to get the house in order and pack tonight when I got a FB message from one of our FAVORITE nurses here at home in Mobile at the children's hospital. A family was there who's 10 month old was just diagnosed with Ependymoma and had a resection (not gross total) and a shunt placement. She asked if I could call them, and yes, she had their permission. Well, I will always allow God to use me and I called. The mom was busy getting lunch and taking a quick break. I told her to call me back when convenient for her. The more I thought about it, the more I felt compelled to go up there in person. The drive over the bridge to Mobile is a familiar one, but tonight my heart was heavy and my mind was flooded with memories and my voice couldn't even utter the words to "Healer" as I listened to it on the radio and cried. Praying the words over this little one.
We stayed for about 3 hours, just talking, listening and sharing. I remember the smell of those hallways, the beeping of those monitors and the faces of the nurses who recognized us (and their relief at knowing Ivee was not in the hospital but we were just visiting). It meant so much to me to able to be there for this family at the beginning of their journey, to answer their questions and offer them advice. When we began this journey so many years ago, we were so lost and didn't have any help, for there were no other families we could talk to. No one who knew our pain. No one to tell us how to watch out for our child. They are taking their baby to St. Jude once he is able to go, and I was there to calm any fears they had about moving there for this time and trial in their lives. I was able to tell them what a WONDERFUL place it is for a child who has ependymoma.
So you see, I am living a life that for 4 years 8 months and 14 days has had many unexpected moments or "opportunities" to arise. I live everyday not having an expectations, but hoping for normalcy...our normalcy. But I can say...I don't make promises (just ask my children), because I don't ever want to be labeled a promise breaker by my children or any one else. BUT I promise that as long as God gives me the opportunity and opens the doors on this journey, one that I would not have chosen, I will do my best to be a witness and minister to those who walk the same road with us.
So, my family of prayer. I ask for prayer for Baby R (as I will call him) and his family as they begin this journey. I ask for prayer for Frederick and Anderson's families as they have lost their battle to ependymoma a few days and weeks ago. And I beg of you for continued prayers of healing for Ivee and all her cancer friends. You are our prayer warriors and we love you all!!!!!!!!
I leave for Memphis tomorrow. I just got home Saturday from a trip with my sister and our 6 kids to visit the other sister in Jacksonville, FL, whom we don't get to go see very often. I knew if we were going to try to get there, it would have to be before school starts on August 15th. We had a wonderful time, even took the kids to Seaworld, and Ivee had a blast...well worth the trip. On the way back Saturday, I was looking forward to seeing Emmett. 2 1/2 hours away from my sister's house in P'Cola (where I would take them back to) we got a phone call from my B-in-law, who had been in a car accident. So, getting back home wasn't all we had hoped for, with daddy standing on the front porch waiting for us to drive up, like he does many times when he misses us. Instead, he drove to P'Cola and took the BIL home for my sister. (Yes, he is okay, just a sprained knee). I told my sister, welcome to the Foley family adventures. You never know what could be coming next or make you change your plans. Well, I knew a week before Jacksonville that Memphis would have to happen the week after that trip. It is tiring to do one trip then turn around and do another, but St. Jude was able to get it all done for us and all in one day and before school starts!!! So, we go with the flow. I had planned to get the house in order and pack tonight when I got a FB message from one of our FAVORITE nurses here at home in Mobile at the children's hospital. A family was there who's 10 month old was just diagnosed with Ependymoma and had a resection (not gross total) and a shunt placement. She asked if I could call them, and yes, she had their permission. Well, I will always allow God to use me and I called. The mom was busy getting lunch and taking a quick break. I told her to call me back when convenient for her. The more I thought about it, the more I felt compelled to go up there in person. The drive over the bridge to Mobile is a familiar one, but tonight my heart was heavy and my mind was flooded with memories and my voice couldn't even utter the words to "Healer" as I listened to it on the radio and cried. Praying the words over this little one.
We stayed for about 3 hours, just talking, listening and sharing. I remember the smell of those hallways, the beeping of those monitors and the faces of the nurses who recognized us (and their relief at knowing Ivee was not in the hospital but we were just visiting). It meant so much to me to able to be there for this family at the beginning of their journey, to answer their questions and offer them advice. When we began this journey so many years ago, we were so lost and didn't have any help, for there were no other families we could talk to. No one who knew our pain. No one to tell us how to watch out for our child. They are taking their baby to St. Jude once he is able to go, and I was there to calm any fears they had about moving there for this time and trial in their lives. I was able to tell them what a WONDERFUL place it is for a child who has ependymoma.
So you see, I am living a life that for 4 years 8 months and 14 days has had many unexpected moments or "opportunities" to arise. I live everyday not having an expectations, but hoping for normalcy...our normalcy. But I can say...I don't make promises (just ask my children), because I don't ever want to be labeled a promise breaker by my children or any one else. BUT I promise that as long as God gives me the opportunity and opens the doors on this journey, one that I would not have chosen, I will do my best to be a witness and minister to those who walk the same road with us.
So, my family of prayer. I ask for prayer for Baby R (as I will call him) and his family as they begin this journey. I ask for prayer for Frederick and Anderson's families as they have lost their battle to ependymoma a few days and weeks ago. And I beg of you for continued prayers of healing for Ivee and all her cancer friends. You are our prayer warriors and we love you all!!!!!!!!
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