Thursday, October 9, 2008

More Information?!?!?!

So we had the opportunity to meet with our Home Health Care Nurse. She seems to be very knowledgeable. I was surprised when she brought in a box full of medical items all for our little girl. I couldn't believe everything that she pulled out of it (it reminded me of Mary Poppins bag) she just kept bringing more and more out of it and I couldn't believe that all of it fit inside that box. So we are headed for an extreme lifestyle change. I am not one to stay at home very many days of the week. As our little one begins her treatments we will be spending all of our time at home with her (either her dad or I will have to be here)or at the hospital. We enjoy a clean house, but were told that there is more that we must do to protect or baby from being introduced to other types of germs that could put her life at risk. I am about to look online and see if I can purchase any of the hospital's moisturizing hand sanitizer (it must be better than regular store bought brand). I was told to keep some at every sink in my house as well as in every car and in her diaper bag. My other children must come in and wash their hands then sanitize and change their clothing after coming home from school and church. We are to post a sign outside our house similar to the ones you see at the hospital or on the nursery doors at church warning people that have been coughing, sneezing, had a cold, diarrhea, vomiting, sore throat or been exposed to any communicable diseases within the past month to please call us instead of knocking on our door. The Nurse also explained that all those that will come in contact with her must have had a flu shot as well. Does this all seem like too much? Well I guess that I must ask myself to what extremes will I go to prevent any other types of harm to come to my daughter that might further risk her life. I was also prepped on proper care of her Broviak line and emergency care of it also. I will be making emergency kits to put in her diaper bag, the car, upstairs in our house and also on the main floor. Basically anywhere she is there must be an emergency kit handy. The nurse kept insisting that you can never be too prepared or too cautious. (has your mouth dropped open yet?) We have her cell phone number and the oncologist number handy at all times (yes that means in the cell phone and also memorized) She also made sure that we knew when we would need to forgo calling either of those and call 911 directly. (have I scared you yet?) and the list goes on and on but I won't spend anymore time on that. I also recieved a call from the oncologist so let me update you on what we know. Our little girl has a Germ Cell Tumor (now they are running further testing to determine what type of Germ Cell Tumor it is). She will be going up to the hospital to have her hearing tested so that the oncologists can have a base line of her hearing because they said that the type of treatments they will be using on her tumor could effect her hearing. The dr. thought that maybe she had a form of cancer called Rhabdomyosarcoma or the Germ cell my husband and I asked which of the two would be worse to have and she had simply stated both of them have things that are better and worse than the other. With that said today when the oncologist called she said that the good news is that this type of cancer may not need radiation treatment, but that the bad news is that she will have to undergo a more severe chemotherapy treatment and it will be very harsh on her little body. So we start our chemotherapy treatments one week from today and will most likely spend 5 days at the hospital. I am not sure what to expect when we come home, but am very nervous and distraught at the thought of having to watch my little angel go through these types of treatments. More than anything I wish that I could do it for her myself. No parents want their children to suffer. I hope and pray that her burden will be lifted even a little and that she might be spared some of the pain and discomfort that is coming her way. Please keep our little one in your thoughts and prayers......Please!


Julie said...

We just wanted to let you know that we love you and your family so very much and are here for you at any time. You are in our thoughts and prayers and we will do anything to help you get through this huge trial. We appreciate the blog that you started and want to let you know how grateful that we are for the gospel. We truly can turn to our Father in Heaven at times such as this and know that he will bless us. Love always, The Hatfields

okerlund family said...

Wow, you sound already like a medical professional. I'm sure that is exactly what you never wanted to become, especially with your own children. I just want you to know you are very much in my thoughts and my prayers. Thank you for your sharing your blog with us. I really wish I would have taken the time to sit down and jot my thoughts with our little one's illness. There were so many times when we felt so much strength and comfort, and being able to go back and read them through the more trialsome, and almost hopeless times would have done so much good for us--and others too. I would be able to go back now and see how far we've come in the past 2 1/2 years. YOu both will grow so much with your family as you get through the struggles ahead. Just like you said, it would be so much better if we could go through the pain, trials and discomfort for our children. I am so sorry you have to see your little one struggle so. I know your road will be a difficult one and if there is every anything I can help out with, please call!!! I would love to help out in any way. Love, mary

The Johnsons said...

I can't think of anything to say that could be helpful, because your blog covers it all. Even though it's difficult, you have the right attitude, and your insights as to what needs to be done are right on. While we of course will be praying for sweet Alyssa, we will also be praying for you, to be continually uplifted, and to have the strength you will need to call on, that will be more than you've ever needed.

I will add one more thing to your list. Make sure you take care of yourself. You are going to be giving a lot of yourself for your family. Don't let your well go dry. You have a lot of family and friends that would dearly love to help in any way possible. Let us help you, you will need some time for yourself, so you don't burn out. Don't try to do it all yourself, we are supposed to serve each other, sometimes you have to be willing to be the recipient of service, instead of being the one to give it. There are seasons for everything. Please, please let your needs be known.
Thank you for this blog. We want to be able to pray specifically for Alyssa, and your family, and to know what's going on.
You're going into this with a great attitude and spirit.
We love you.

Angela Baird said...

I can't believe what you must be trying to process right now! I am still working through some of the details of every day life for you... with the changing clothes (in mom's terms, Laundry), sanitizing, emergency kits, memorized phone numbers, etc. you said, my jaw has dropped.
As you said earlier, though, you can do it...if anyone has the love, patience, faith and stamina to pull through this and help your husband and kids, it would be you. Our prayers are with you, always...

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