Thursday, January 22, 2009

We Have Been Blessed

We came home last night from surgery and she is doing great. I can't help but feel a bit of relief after having her Broviac Tube removed and seeing her running around and feeling good. I have been in tears off and on since last night. I feel so blessed! We are not in the clear, but we are well on our way.
I have a good friend that lives here in my neighborhood that I have found as such a comfort while my family has been going through this difficult time. She used to work up at the Children's Hospital in the oncology ICS unit. I have been able to get some wonderful tips and ideas from her, Thank You! She gave me the idea of having my daughters pictures taken before her hair starts to grow back. She gave me the name of a very good photographer that is a part of "The Littlest Heroes Project". You should look up their website to see what they do, people are so wonderful: (
I called up the photographer and she graciously squeezed us into her schedule very quickly. So on Monday I headed up to her studio for a photo shoot of my little hero. You can look at a couple of her photos on her blog, the pictures are absolutely darling: ( I am compelled to again thank all of our many angels that we have encounter during this journey we have been on. I have felt the spirit so strongly over the last couple of days realizing how much love my Heavenly Father has for me and my family. No matter how difficult life has gotten we have always been blessed with the ability to recognize the spirit giving us strength during this time. We are all sons and daughters of our Heavenly Father and I know that his love for us is constant. No matter what stage of life we are in, no matter what struggles we are going through, no matter what mistakes we have made, no matter the challenges we encounter, his love is always there for us! I wish I could give everyone the opportunity to feel what I am feeling in my heart, and understand what I am understanding right now. But, there is no way for me to do that other than writing it down and having you read it. I pray that you will feel the spirit of love that I am at this time and know how much our Heavenly Father loves each one of us, regardless! I know what I have written is true and I am so grateful for that understanding........ My family and I are so blessed.

Sunday, January 18, 2009

We've Decided....

So.... we along with our Oncologist decided the best thing for our daughter, considering all of the options, would be to just watch her lymph nodes that are enlarged. So here is a brief look into the next couple of years for us. This Wednesday we will be taking her back up to the Children's Hospital for same day surgery to have her Broviac Tube removed. We are so glad that she had this line in place during all of her blood draws and treatments. It has saved her from getting poked several times a week. We are also glad to have it removed because, this means no more bandage changes, cap changes or line flushes (I am very good at it though and would be more than willing to walk anyone through the process if they ever needed to care for a line). It also means that we will be able to resume regular bathing, I think she will be just as excited about that as we will be. She begs to get in the tub whenever one of her siblings is taking a bath. For the next year, we will take her in for blood draws monthly and every three months she will have another MRI and chest X-ray along with an Oncology Exam. The second year she will resume blood draws every three months and MRI and chest X-rays every six months. Following the second year she will continue to have Oncology exam regularly. Everything the Oncologist said after the two year mark gets a little hard to remember, we were just trying remember what the next two years holds! I do remember her saying that once she passes the two year mark they stop worrying so much about the cancer itself, and start focusing on the damage done to her body from the cancer treatment process instead. Let me first say that I am so thankful for the medicine that was used to treat her cancer and its effectiveness on the shrinking of her tumor, however I pray that in the near future they will be able to find a different type of treatment that is just as effective or more effective and will not be as harmful to the patients being treated. Again, thank you everyone for your constant words of comfort and prayers for our family. We will continue to give updates on her progress!

Tuesday, January 13, 2009

Wonderful News

I apologize that it took so long to put an update on our blog. We were waiting for a call back from the Oncologist today to get a few question and miss understandings cleared up before we spread the word. We have wonderful news: We have all been anticipating the past couple of days, waiting to find out what the last three months of chemotherapy has done to the tumor in our babies body. Well the MRI scan has shown that there are no visible signs of the tumor in her uterus. That means that with the MRI they were not able to see any of the tumor itself. It also means that without any further actual testing of her uterus where the tumor was they are unable to tell whether all of the living cancer cells are completely gone or not. At this point it is not in her best interest to test the uterus because of her age and size. The Oncologist told us that she was concerned with two abnormal lymph nodes detected by the MRI. Because of the size and location she is fairly confident that the abnormality in the lymph nodes is caused by cancer cells, but she's not sure whether the tissue inside the lymph nodes is living cancer cells or dead cancer cells. The good news is that her AFP levels (hormone secreted by her cancer) are at a healthy level right now. The Oncologist seems to think that the lymph nodes should have shrunk just like the tumor did, so they are perplexed with the differing results. With lymph nodes the best way to tell whether there is living cancerous tissue inside is by surgically removing it and looking at the tissue under a microscope. The Oncologist feels that this would be an extreme measure at this time. Her Lymph nodes in question are sitting near her back and are underneath a lot of her internal organs, the less they mess with internally the better. Although, at the same time it could be beneficial as it would provide definite results fairly quickly. A second option is have a PET scan which can detect some cancerous lymph nodes. Unfortunately germ cell tumors have not been study enough with a PET scanner to know whether or not the results are accurate with that type of cancer. PET scan also exposes her to more radiation (and we all know the least amount of radiation possible is best). So there are pros and cons to having the scan. Another way to monitor the change in cancerous tumors is by checking the tumor marker or hormone secreted by her type of cancer. When her blood draw is done a test of the AFP level can tell whether the germ cell tumor hormone is decreasing, rising, or staying level. This is a good way to monitor whether her tumor is coming back or not (it would do the same for the two lymph nodes as well). We have a few nights to think about what we would like to do and then we will call the Oncologist and together we will decide what to do with the enlarged lymph nodes. Thankfully we will have time to do a little research of our own and study it out in our minds and then pray for guidance concerning this decision. We can also back up our feelings with the medical knowledge and expertise of our Oncologist. Thank you all for the many thoughts and prayers in her behalf, we feel very blessed and fortunate with the results of the MRI scan and are thankful to be able to move on to the next stage of our daughters cancer treatment. I think we will celebrate this weekend the wonderful progress our daughters cancer has made this far!

Friday, January 9, 2009

We're All Excited!

We are all excited for this next week to come. On Monday we will be heading up to the Children's Hospital for our daughters MRI and CT scan. We made it through the first block of treatments! The tests done on Monday will tell us what the past three months of treatments has done to her tumor. We are very anxious to see how her tumor has responded to the Chemotherapy. On Tuesday we will have an Audiogram done on her ears and then we will head to the Oncology Clinic to have a consultation with her Oncologists. We know that she is in your thoughts and prayers, but an extra prayer or two would be wonderful. The results on Monday and Tuesday will determine what happens next for her. We are hopeful that her tumor has responded well and that we might be able to start a new phase in her treatment.

Tuesday, January 6, 2009

Just A Small Update

Our little one is doing well. She has finally stopped throwing up. It seems that this time post-treatment she threw up more than before. I don't know why, but I wonder if it has something to do with the fact that she started her last round of Chemotherapy with a cold and her system was already run down. She has had her blood drawn three times since we came home. Her levels should be at their low right now, but they are actually pretty good. They're a little low, but not enough to need a blood transfusion. Her ANC is up high enough that we were able to give her her last Neupogen shot last night, HOORAY! She will be glad to be done with her shots, I think she has finally caught on to what happens when we take the syringe and needle out of the package. She starts to wiggle, hold her legs and fuss. Hopefully this won't have lasting effects on her for shots she will need in the future. We have noticed that her appetite is coming back. Not back to normal, but she is eating three small meals a day. This is good since she usually will eat only one good meal a day and pick at her food the other two meals. It also takes her almost two and a half weeks before she actually eats three meals again. Her energy level seems to be back as well. We feel really good about her progress. Our other children keep asking us when their sister is going to be better, since we don't know for sure, we just keep telling them that when her Broviac tube is removed then she will be better. Now every time they say their prayers we hear, "Please bless Alyssa to get her tube out so she can be better." I guess we need to explain it a little different so they don't think that the tube is the thing that is making her sick. Our oldest daughter understands but I am not so sure about the middle two children. Speaking of prayers, we are so thankful for all of the prayers being said for our family. We know that we are being very blessed because of the faith and prayers of all of our friends and family, Thank You!