Hello world!
2 years ago
Wednesday, February 18, 2009
Joy in the midst of chaos!
It's been a little over 2 weeks since my sister and her family have been staying at our house during Maria's treatment at CHOP. It's been quite chaotic at times....since then Maria was unexpectedly hospitalized for three days with respiratory problems after a test... My mother has been in the hospital for treatment for her cancer... My daughter Mallory has had foot surgery. There has be a lot of stress and anxiety...sleepless nights, and temper tantrums (the kids...but the grown-ups have been tempted!)
In spite of the sheer weight of the situation, we've managed to get through many tough hours and days by counting our blessings and finding humor where we can.
I can't tell you how many cartons of ice cream, trays of Stouffers Mac and Cheese, packages of Perdue Dinosaur shaped chicken nuggets, pounds of grapes, boxes of Frosted Flakes, boxes of Eggo Chocolate, Chocolate Chip Muffin Tops, and Quaker Chewy granola bars we've been through! Pretty soon Shop-Rite is going to create an express lane just for me and my sister!
With all of the craziness, there have been many moments of joy. I've gotten to spend time with my "baby sister" and my nieces and nephews and my brother in law...who is actually working from here. I've been to the movies to see "Hotel for Dogs" with Sofia and Anthony. We've gone to the Adventure Aquarium. We also went shopping at Toys-R-Us...that almost made me boo hoo as I remembered bringing my own little ones there to shop for toys and things.
Maria has figured out how to blow raspberries, she's learning to clap, she's sitting up by herself well, and today she crawled...backwards...but she was motoring! And the biggest event was that she spent an hour and half with me and Mallory tonight...whether her mommy and daddy were in the room or not! Of course, two days before she goes back to the hospital she gets used to us! The poor little girl has not wanted to be held by anyone else since she went to the ER almost a month ago.
We are finding humor in anything we can. When Mallory had foot surgery, she really couldn't walk on her own and I couldn't carry her...and she needed to use the bathroom! Vince was holding the baby because Lorraine was at ...Shop Rite of course...and Dave was at work. So...I got the old faithful little red wagon and pulled her around the house in that! We had quite the laugh as she did the beauty queen wave while I pulled her around.
We had visits with friends and family, cards, gifts, and fruit delivered to the house. People are praying across the country and the world for Maria. The love and concern that has been shown to us all has lifted us and blessed us.
Maria is having surgery on Friday..less than 48 hours from now. The doctors have told Lorraine and Vince that the tumor is almost certainly malignant. But Maria's prognosis is excellent due to her age, the location of the tumor, and that all of the tests she's had show no cancer anywhere else in her body. I'm still praying that the tumor will be benign, please pray that too. And if it is cancer, please pray that the surgery will be the only treatment she will need. Please pray for the surgery itself to go well, and for Maria's body to heal well and quickly. Pray for comfort and peace for Lorraine, Vince and the rest of the family as Maria goes into surgery.
Thank you for your prayers! Knowing others are praying for us has brought me great joy.
Saturday, February 7, 2009
Maria update
A lot has changed since my last post about Maria. She was scheduled to be at CHOP this past Wednesday for an injection of contrast dye for an MIBG scan on Thursday. Because it took 5 tries to get the line into her little arm, they decided to leave the port in and sent her back home (home meaning my house) with this little Velcro gizmo in her arm to protect it. For everything this little girl has been through, for some reason, this thing didn't bother her! It did have a scratchy edge on it, so I improvised with the tube of a sock to protect her little face after we notice she scratched herself. Here is what she looked like on Wednesday night.
Thursday, Vince and Lorraine took her back to CHOP for the test. Originally, the radiologist was going to sedate Maria for the scan, but when they realized that the tumor was pressing up against the windpipe, they decided not to do that because the sedative relaxes the muscles around the windpipe. They were concerned about too much airway constriction. Her lungs were completely clear, so they opted to give her general anesthesia. After she came out of that, she has some bronchial spasms and she was put on oxygen. That was Thursday night. The surgery was scheduled for Friday morning. In the morning, the surgeon decided it was best to push back the surgery for two weeks. Originally, he was very adamant that the surgery be ASAP, but he said that he was very comfortable waiting 2 more weeks to be sure the RSV was all cleared up, and that Maria was going to be "just fine." He hinted he had seen some preliminary test results, but said that the oncologist would be in to talk to Lorraine and Vince. They were hopeful that his change of attitude meant good news. And, praise God, all of the tests she had showed no presence of cancer anywhere else in her body. It's very likely the tumor is a neuroblastoma, but the oncologist again stressed that if all went the way she expected, the surgery would be the end of it, no other treatment would be necessary.
Unfortunately..it's now Saturday night and Maria is still there. Her respiration has been too rapid on and off since then, and she's been on and off oxygen. By this afternoon, the doctors were thinking more and more that the problem has more to do with the tumor pressing against the windpipe than anything else. They cultured Maria again for RSV and other respiratory viruses, but they don't expect to find anything because her lungs are clear and her nose is dry. The doctors say that there is no way to know if it's the tumor causing the breathing problems until it's removed and they see what happens. Tomorrow they will again re-evaluate, if her breathing is still irregular, she'll remain until Monday, at which time they will review all of the tests and the surgeon will decide if the surgery needs to be moved up again.
My poor sister has been at CHOP since Thursday with the same clothes...my brother-in-law stayed the first night, but has been back here the last two nights. They thought that both days she was coming home, so he didn't bring anything back for my sister. Tonight, she was going to come home and Vince would stay, but since it's such a critical night, she wanted to be there. So tomorrow, he's bringing Lorraine's stuff back with him...maybe it will be like bringing an umbrella and then it doesn't rain!
If Maria is discharged, my sister and her family will still stay here until the surgery so they are not two and a half hours away from CHOP. We've got plenty of room and I think everyone feels better knowing they can be close by.
I've been on "Aunt Annette" duty since Wednesday. I'm resurrecting all of my mommy skills...I've stocked up with chicken nuggets and macaroni and cheese, I'm giving baths again and kissing boo boos. We went to see "Hotel for Dogs" yesterday, and today we went to the Aquarium. My niece and nephew, who up until Thursday night, have NEVER spent the night without at least one parent in their entire lives, have been troopers. I think their parents are amazed, and I think God has a lot of angels here with Sofia and Anthony.
...And on top of this, our mom, who has cancer, went into the hospital yesterday. She's been in a lot of pain and they need to get it under control. Fortunately, my other sister and my brother were able to go see her today.
But still, there is joy because God is so good. If Maria hadn't gotten the RSV, who knows when they would have found this tumor. And she's in the best hospital in the country for children. And they can stay close even if she is discharged because I live nearby.
Your prayers are working. The test results have been good. If the tumor is malignant, it was caught in time before if became a bigger problem. And her general health is improving so she will be ready for surgery hopefully sooner than later. Thank you for your prayers. My sister knows this is out there and so many people are praying. And she believes prayer works.
Thursday, Vince and Lorraine took her back to CHOP for the test. Originally, the radiologist was going to sedate Maria for the scan, but when they realized that the tumor was pressing up against the windpipe, they decided not to do that because the sedative relaxes the muscles around the windpipe. They were concerned about too much airway constriction. Her lungs were completely clear, so they opted to give her general anesthesia. After she came out of that, she has some bronchial spasms and she was put on oxygen. That was Thursday night. The surgery was scheduled for Friday morning. In the morning, the surgeon decided it was best to push back the surgery for two weeks. Originally, he was very adamant that the surgery be ASAP, but he said that he was very comfortable waiting 2 more weeks to be sure the RSV was all cleared up, and that Maria was going to be "just fine." He hinted he had seen some preliminary test results, but said that the oncologist would be in to talk to Lorraine and Vince. They were hopeful that his change of attitude meant good news. And, praise God, all of the tests she had showed no presence of cancer anywhere else in her body. It's very likely the tumor is a neuroblastoma, but the oncologist again stressed that if all went the way she expected, the surgery would be the end of it, no other treatment would be necessary.
Unfortunately..it's now Saturday night and Maria is still there. Her respiration has been too rapid on and off since then, and she's been on and off oxygen. By this afternoon, the doctors were thinking more and more that the problem has more to do with the tumor pressing against the windpipe than anything else. They cultured Maria again for RSV and other respiratory viruses, but they don't expect to find anything because her lungs are clear and her nose is dry. The doctors say that there is no way to know if it's the tumor causing the breathing problems until it's removed and they see what happens. Tomorrow they will again re-evaluate, if her breathing is still irregular, she'll remain until Monday, at which time they will review all of the tests and the surgeon will decide if the surgery needs to be moved up again.
My poor sister has been at CHOP since Thursday with the same clothes...my brother-in-law stayed the first night, but has been back here the last two nights. They thought that both days she was coming home, so he didn't bring anything back for my sister. Tonight, she was going to come home and Vince would stay, but since it's such a critical night, she wanted to be there. So tomorrow, he's bringing Lorraine's stuff back with him...maybe it will be like bringing an umbrella and then it doesn't rain!
If Maria is discharged, my sister and her family will still stay here until the surgery so they are not two and a half hours away from CHOP. We've got plenty of room and I think everyone feels better knowing they can be close by.
I've been on "Aunt Annette" duty since Wednesday. I'm resurrecting all of my mommy skills...I've stocked up with chicken nuggets and macaroni and cheese, I'm giving baths again and kissing boo boos. We went to see "Hotel for Dogs" yesterday, and today we went to the Aquarium. My niece and nephew, who up until Thursday night, have NEVER spent the night without at least one parent in their entire lives, have been troopers. I think their parents are amazed, and I think God has a lot of angels here with Sofia and Anthony.
...And on top of this, our mom, who has cancer, went into the hospital yesterday. She's been in a lot of pain and they need to get it under control. Fortunately, my other sister and my brother were able to go see her today.
But still, there is joy because God is so good. If Maria hadn't gotten the RSV, who knows when they would have found this tumor. And she's in the best hospital in the country for children. And they can stay close even if she is discharged because I live nearby.
Your prayers are working. The test results have been good. If the tumor is malignant, it was caught in time before if became a bigger problem. And her general health is improving so she will be ready for surgery hopefully sooner than later. Thank you for your prayers. My sister knows this is out there and so many people are praying. And she believes prayer works.
Tuesday, February 3, 2009
Pray for Maria
I'm not sure how often I'm going to be posting over the next week or so, if at all. I've been asking for prayers for my niece Maria. Here's her situation. I ask you to keep her and her family in prayer.
Maria is 7 months old. The pediatrician sent her to the ER about 10 days ago because she was very sick. She was diagnosed with RSV, which is a respiratory infection common in infants. Part of the treatment in the ER was a routine chest x-ray. The next day the ER doc contacted my sister Lorraine to say there appeared to be an abnormality on the x-ray that they wanted to take a closer look at. After ultra-sound and CT scan the doctor confirmed that there was a tumor. She met with a surgeon who told her it was a"neurogenic" tumor that needed to be removed sooner than later. He could not say whether it was benign or malignant. The surgery was scheduled at a children's hospital in North Jersey and would have been today as long as Maria was well enough. The immediate concern, besides the obvious, was that the surgeon told Lorraine and her husband Vince that he would have to deflate the lung in Maria's chest in order to remove the tumor.
After much discussion within the family, Lorraine and Vince decided to seek a second opinion at Children's Hospital of Philadelphia. The appointment was set, and the scheduled surgery postponed. Because of the logistics, Vince was going to stay up in N. Jersey with the other kids, Sofia and Anthony, and Lorraine would come here so that I could take her to CHOP.
Maria's appointment was with the Surgeon in Chief of Pediatric General, Thoracic, and Fetal Surgery. (Of course Lorraine checked his credentials once she found out who the appointment was with. They are excellent.) After looking at the CT Scan, the surgeon came in and said that he was going to very upfront. He suspected a neuroblastoma, which is a malignant tumor on the neurogenic spectrum. My poor sister looked like someone dropped a piano on her head. Fortunately he very quickly went on to say that because of Maria's age and the location of the tumor, conditions for a cure were "very favorable." He explained the procedure, noted some possible affects of the surgery because the tumor is located within the "sympathetic nervous system," and answered all of her questions. Lorraine asked about Maria's lung being deflated and he told her that he saw no need to do that. It was an answered prayer. He told Lorraine that should she decide to schedule the surgery at CHOP, he would get her in immediately to see an oncologist and someone from anesthesiology. The oncologist would explain more about neuroblastoma, and possibly set up further diagnostic tests so if the tumor was malignant, everything would be in place if further treatment was necessary. The anesthesiology department would evaluate Maria's breathing and make any necessary adjustments to her breathing treatments prior to surgery. After calling Vince, they decided to go ahead and schedule at CHOP. Not only did this surgeon have much more specific information than was given at the other hospital, but they immediately addressed Maria's overall care. CHOP is the best, and why not have the best?
The surgery is scheduled for this coming Friday, as long as the anesthesiologist is satisfied that Maria's lungs are clear enough to safely anesthetize her.
The oncologist we saw was wonderful. She asked what the surgeon had told Lorraine so far, and Lorraine said that he was very sure it was a neuroblastoma. Her response was, "I'm not so sure about that." She talked about the full spectrum of neurogenic tumors, and said this could be anywhere on the scale. If it is malignant, she also said that because of Maria's age and location of the tumor, it was very possible that the surgery would resolve the whole thing. This kind of cancer in infants usually doesn't have to be treated further if the tests show it was contained in the original tumor. She went on to say that when most patients come in to see her for the initial consult, she is ready to discuss the treatment that she thinks would be best post-op. However, in this case she was very hopeful, and she saw no need to "even go there" and worry Lorraine about things that may not even need to happen. She said if Maria was 5 years old, they would be having a very different conversation. In order to get the best possible overall picture of Maria's situation, the oncologist recommended some diagnostic test before and during surgery to rule out cancer anywhere else, so that by the time the biopsy results came in 4 to 5 days after surgery, they would know everything they need to know.
There is no known cause for these tumors. The doctor says that nothing Lorraine did or was exposed to during pregnancy would have caused this. They don't even know if babies are born with these tumors, or if they develop after birth. Sometime these tumors can start out as malignant, and become benign! But no one's going to wait around to see if that happens!
Maria will have to visit CHOP on Wednesday and Thursday for tests, and hopefully surgery Friday, and about a 3 day recovery afterward. The whole family will be staying here for the duration, my sister of course will stay in the hospital from surgery until the time the baby is discharged.
I get take care of my niece and nephew, who, of course, are both anxious. But I promised them that we would have a big party and do lots of stuff the entire time we are here! I've stocked up with goodies, and planned lots of activities...so we are all good to go! In some ways, this is much easier, because I don't have to worry about Mallory's school schedule, and Dave's travel schedule, and coordinate that with being up north with the kids. We are all here, Vince will be here to tuck them into bed at night. Maria's getting the best care available. So that's all good.
Please pray for Maria. Pray for the tumor not to be malignant at all. Pray for Lorraine and Vince when they have to watch Maria wheeled out for surgery. Pray for God to bless them all with the best. We know God can do anything.
Maria is 7 months old. The pediatrician sent her to the ER about 10 days ago because she was very sick. She was diagnosed with RSV, which is a respiratory infection common in infants. Part of the treatment in the ER was a routine chest x-ray. The next day the ER doc contacted my sister Lorraine to say there appeared to be an abnormality on the x-ray that they wanted to take a closer look at. After ultra-sound and CT scan the doctor confirmed that there was a tumor. She met with a surgeon who told her it was a"neurogenic" tumor that needed to be removed sooner than later. He could not say whether it was benign or malignant. The surgery was scheduled at a children's hospital in North Jersey and would have been today as long as Maria was well enough. The immediate concern, besides the obvious, was that the surgeon told Lorraine and her husband Vince that he would have to deflate the lung in Maria's chest in order to remove the tumor.
After much discussion within the family, Lorraine and Vince decided to seek a second opinion at Children's Hospital of Philadelphia. The appointment was set, and the scheduled surgery postponed. Because of the logistics, Vince was going to stay up in N. Jersey with the other kids, Sofia and Anthony, and Lorraine would come here so that I could take her to CHOP.
Maria's appointment was with the Surgeon in Chief of Pediatric General, Thoracic, and Fetal Surgery. (Of course Lorraine checked his credentials once she found out who the appointment was with. They are excellent.) After looking at the CT Scan, the surgeon came in and said that he was going to very upfront. He suspected a neuroblastoma, which is a malignant tumor on the neurogenic spectrum. My poor sister looked like someone dropped a piano on her head. Fortunately he very quickly went on to say that because of Maria's age and the location of the tumor, conditions for a cure were "very favorable." He explained the procedure, noted some possible affects of the surgery because the tumor is located within the "sympathetic nervous system," and answered all of her questions. Lorraine asked about Maria's lung being deflated and he told her that he saw no need to do that. It was an answered prayer. He told Lorraine that should she decide to schedule the surgery at CHOP, he would get her in immediately to see an oncologist and someone from anesthesiology. The oncologist would explain more about neuroblastoma, and possibly set up further diagnostic tests so if the tumor was malignant, everything would be in place if further treatment was necessary. The anesthesiology department would evaluate Maria's breathing and make any necessary adjustments to her breathing treatments prior to surgery. After calling Vince, they decided to go ahead and schedule at CHOP. Not only did this surgeon have much more specific information than was given at the other hospital, but they immediately addressed Maria's overall care. CHOP is the best, and why not have the best?
The surgery is scheduled for this coming Friday, as long as the anesthesiologist is satisfied that Maria's lungs are clear enough to safely anesthetize her.
The oncologist we saw was wonderful. She asked what the surgeon had told Lorraine so far, and Lorraine said that he was very sure it was a neuroblastoma. Her response was, "I'm not so sure about that." She talked about the full spectrum of neurogenic tumors, and said this could be anywhere on the scale. If it is malignant, she also said that because of Maria's age and location of the tumor, it was very possible that the surgery would resolve the whole thing. This kind of cancer in infants usually doesn't have to be treated further if the tests show it was contained in the original tumor. She went on to say that when most patients come in to see her for the initial consult, she is ready to discuss the treatment that she thinks would be best post-op. However, in this case she was very hopeful, and she saw no need to "even go there" and worry Lorraine about things that may not even need to happen. She said if Maria was 5 years old, they would be having a very different conversation. In order to get the best possible overall picture of Maria's situation, the oncologist recommended some diagnostic test before and during surgery to rule out cancer anywhere else, so that by the time the biopsy results came in 4 to 5 days after surgery, they would know everything they need to know.
There is no known cause for these tumors. The doctor says that nothing Lorraine did or was exposed to during pregnancy would have caused this. They don't even know if babies are born with these tumors, or if they develop after birth. Sometime these tumors can start out as malignant, and become benign! But no one's going to wait around to see if that happens!
Maria will have to visit CHOP on Wednesday and Thursday for tests, and hopefully surgery Friday, and about a 3 day recovery afterward. The whole family will be staying here for the duration, my sister of course will stay in the hospital from surgery until the time the baby is discharged.
I get take care of my niece and nephew, who, of course, are both anxious. But I promised them that we would have a big party and do lots of stuff the entire time we are here! I've stocked up with goodies, and planned lots of activities...so we are all good to go! In some ways, this is much easier, because I don't have to worry about Mallory's school schedule, and Dave's travel schedule, and coordinate that with being up north with the kids. We are all here, Vince will be here to tuck them into bed at night. Maria's getting the best care available. So that's all good.
Please pray for Maria. Pray for the tumor not to be malignant at all. Pray for Lorraine and Vince when they have to watch Maria wheeled out for surgery. Pray for God to bless them all with the best. We know God can do anything.
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