Giving Up Cakes For A While...please Pray For Our Family!
Lounge By messy_chef Updated 26 Feb 2010 , 4:42pm by pastryqueen9
I am just now seeing this thread. You can add me to the prayer chain too.
How old is Eve? As someone said earlier, you guys are in great hands there at Duke.
God still works miracles every day and I pray that he'll remove this cancer from her. He is well able to supply all your family needs and I believe He'll do just that.
Eve is two years old. We also have a 3 and 4 year old, so it's been doubly tough being away from them while we try to figure everything out.
We spoke with the oncologists this evening and finally got some answers as to what course of action they recommend taking with Eve.
The MRI revealed some uncertainty as to what the spots on her kidneys really are. The doctors still believe that the right kidney has a large Wilms tumor in the upper portion, but the lesions in the lower part may be nephroblastomatoses that should, in theory, rapidly respond to chemotherapy. The left kidney may indeed have small Wilms tumors. We will not know for certain what these spots are until they are removed and sent to pathology.
The kidney is in a shell, which means the tumors are contained. The doctors do not want to take a biopsy because there is a chance of spilling contaminated cells into the abdomen, which would raise the stage of the cancer. They recommend we treat with an agressive therapy plan before removing the tumors.
This plan was developed by a Wilms expert in D.C. who runs a clinical trial in which the patient is given 3 (rather than the standard 2) drugs during therapy. Evidence suggests that the extra drug in combination with the standard two may help get rid of the tumor cells while saving the largest amount of normal kidney tissue. He weighed in on Eve's case and recommended we act as if the Wilms is bilateral, which is to treat aggresively. In the trial, 13 out of 14 children showed a favorable response to the treatment.
The treatment would consist of two consecutive 3-week cycles of chemotherapy. Eve will receive Vincristine (weeks 1-6), Dactinomycin (weeks 1 & 4), and Doxorubicin (weeks 1 & 4). There are certainly side effects, some very serious, but the doctors feel that the risks are worth taking. One of the more serious side effects is damage to both the heart and liver. These will be monitored throughout therapy.
After the chemotherapy is complete, Eve will have an MRI to evaluate any changes. If the chemotherapy has the desired effect, she will go on to have surgery to remove the affected parts of the kidneys. After the surgery, the tumors will be sent to pathology to determine what exactly they are, and then the next form of therapy (chemotherapy and/or radiation) will be decided upon then.
As of tonight, the doctors are going to try to get her into the O.R. tomorrow to have the port put in. We hope to have her first treatment this Friday.
Thank you all again for your support and well wishes. We are extremely blessed to have so many wonderful people in our lives. Even though we haven't been able to respond to messages, we have read each one and your thoughtfulness is truly appreciated.
you obviously have an excellent understanding of your daughter's condition which is the most positive thing you can do for her.
i admire your strength, courage and resolve.
you are in my thoughts.
Today was another eventful day for Eve. She got an EKG to get a baseline of her heart, so we can compare what the Doxorubicin might do to it down the road. She was very cooperative. Her heart looks good, although there is a small hole in the right ventricle that allows blood to flow into the left. A cardiologist will come and speak with us tomorrow, although one of Eve's doctors said there is no need for concern because of the direction of the flow. (If the flow were reversed, there would be a murmur.) He said he isn't worried about it because it is not uncommon and we would never have known if she hadn't had the EKG.
Eve also had her surgery today to put in the port. I am truly shocked by how quickly kids recover. She was bouncing around the room shortly after she woke up! The port will remain accessed while we are in the hospital so Eve's blood can be taken for labs. She does not appear to be in any pain.
Eve was visited by opthamologists today who dilated her eyes and studied them per request of the genetics team. Her eyes are perfectly fine, although her pupils were so big that she looked like she jumped out of an anime cartoon.
We spoke with a nurse from Support Services who began to talk to us about all the expected side-effects of the drugs Eve will receive. We have quite a lot of reading to do in the book that she gave us, but I'm sure we will be experts in a few weeks. I certainly know a lot more than I did four days ago.
Lastly, we signed the consent forms for the chemotherapy. Eve will start tomorrow while her port is still accessed. Our plan is to get her into Friday's clinic. Tomorrow's chemo will be inpatient, but the remaining treatments will be outpatient at the clinic.
As it has been explained to us, she will arrive and have her blood taken to test her white and red blood cell and platelet counts. If they are high enough to continue, she will then be given the drugs, which are administered fairly quickly (two of them take 1 minute and the third will take 15). The biggest part of the visit will be waiting for the lab results, as the lab usually gets backed up. If we come during peak hours (10-10:30 am) we can expect to be at the clinic until 3 or 4 pm. Our goal is to arrive early so we can get her labs back and start chemo as soon as possible.
Eve is apparently well-known throughout the country's oncology community now, and her doctors here are fighting over who will get to treat her. She hasn't let this situation get her down and is still as sweet as ever.
We will be discharged either tomorrow or Thursday, depending on how chemotherapy goes tomorrow. Tonight is the last night the tumors have left to grow!
i really appreciate your keeping us updated as i know we are all thinking about your family.
you are all handling it with such strength and grace.
peace be with you.
Messy_Chef,
Eve, you, and the rest of your family are in my prayers.
So sorry...I truly understand what you are going through....
Many prayers are with you and your family and you will get through this..you might wonder sometimes...but you will....just remember this...I have been told that God only gives to us what we can handle. Duke is a wonderful hospital. My thoughts and prayers go out to you and your family.
I can't believe just five days ago I had never even heard the word "Wilms" and now I am on my way to an honorary doctorate in the subject.
I misspoke yesterday when I said Eve had an EKG...she had an echocardiogram. This morning she got an EKG, which proved her heart is working very well.
Dermatologists came in to check on a curious rash that turned out to be something called lichen striatus. It should go away on its own in a year or so. There goes my theory about this strange, linear rash being related to anything that is going on right now. (I guess not everything HAS to be related to cancer.)
Matt and I both had our blood drawn so the genetics team can compare our blood to Eve's (see first update). There was a miscommunication about my birth year and Matt got some funny looks from his phlebotomist as she thought I was born in 1991. I guess cradle robbers freak out people in the pediatric wing.
We spoke with a clinical social worker who put into words some of the feelings we have been having. It's hard to hear, but helpful at the same time. I am not a cryer, but this week has been emotionally exhausting. I don't think I have felt this drained before.
The nurse from supportive care came up to educate us about all the nitty-gritty stuff. We talked about medicines. We talked about fevers. We talked about who to call at 3 a.m. There was a ton of information. She sent Matt to the pharmacy to pick up the seven prescriptions we will need here at home. The bag he came back with looked like it contained a Bojangles tailgate special inside. There are three anti-nausea medications, one baby laxative, one blood pressure medication, one antibiotic (to prevent pneumonia), and a numbing cream to put on her port before it is accessed for chemotherapy.
Eve got her first round of chemo this evening. She did great...stayed still for the most part. One of the medications (Doxorubicin) is red in color, so 30 minutes after the chemo, her diaper was red. Thankfully, we were told to expect this, or else I would have frantically been hitting the nurse call button. We are supposed to wear gloves when we change her from now on since the drugs are secreted in the urine.
The last order of business at the hospital was her H1N1 vaccine. This poor child has been covered head to toe in band aids, but she takes them like a champ!
The nurse removed the needle from the port and we set off for home, only to find I-40 went from 4 lanes to 1. After a seemingly long journey back, Eve ran inside and put on Natalie's ballet tutu and danced around the house. We finally put her down a little while ago in our room and hope that she can make it through the night without too much nausea.
1 down, 5 to go.
Matt and I have been overwhelmed with the support we have been receiving. With flu season underway, this is a particularly hard time to be immuno-compromised. We will miss visiting with people but know that it is in Eve's best interest to be extra-vigilant and keep her healthy while she goes through this treatment.
Thank you for keeping our family in your thoughts. We are so happy to be back home tonight and can't wait to wake up in the morning to be surrounded by all of our children! (It would be nice if they slept in a bit, though.)
I can't imagine what you're going through with this! I am praying for your family.
I sit here with tears in my eyes. All I want to do is hug you and your family. In times like these you draw strength from your faith in God, the knowledge and skill of the physicians and your friends and family. There is no way you can do it alone.
God bless you and your family during this difficult time. You will remain in my prayers.
I'm happy to have nothing to report today. Eve appeared to make it through last night and today without any nausea! She will go to her pediatrician on Monday to have her blood pressure checked and then to the Duke clinic next Friday for chemotherapy and an appointment with the nephrologists.
It is good for Eve to be home. I think Natalie and Daniel help distract her from any discomfort she might have. In fact, she's so wound up that I can't get to bed because she keeps talking to me! Tomorrow night it's back to her room. I hope you all have a great weekend!
I will be praying for your daughter and family. The doctors thought my 16 year old had testicular cancer when he was 12. I have never been so scared and felt so alone even with my family around me. I will definitely be keeping your family in my prayers
You and your family and little Eve are in my prayers also. As a mother, I can't imagine what you and your husband are going through. I am praying to God for healing for Eve and strength for you.
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