Jinxed's blog: "Pray for Jessie"

Why cant anything just go right?So Jess is doing her home injections and I got a little worried about some side effects.They are the same side effects I brought to their attention when she went through the initial 30day IV phase.Her eyes were bothering her and she was getting headaches.As I read the insert in the box of her injection it sayd prior to taking the interfuron the patient should have an eye exam and if any eye problems occur during treatment to seek advice immediatly.So I called and wanted an appointment asap.Keep in mind that we told them bout eye problems before and they said it wa normal.So we go in to the doctor on 2-2-09 and of course the doctor doesnt even see her,he sends his assistant who I dont like anyway.She is the type that when you are talking she talks over you and has a way to make you feel 2 feet tall.Well she says she is worried and want Jess to STOP her interfuron until she sees an opthomologist and gets an MRI.So she goes and gets a card and had a dr's name and number on it and says they will be expecting my call the next morning at 7:30.I also told the dcs assistant that my other daughter is sick,do I need to worry about Jess getting sick. She said no virus would try and enter Jess with all the meds she has in her. So I call that number on the dot the next morning and they tell me hey will see her that day but they dont take my insurance. They said they take checks though.Like I have thousands of dollars to pay for an MRI when I can go to someone who takes my insurance.I called Jessie's dr back and told them to refer me elsewhere.They got me an appt for the eye dr but were looking for who would do the MRI. Today I get a call from a doctor at 7am saying they can do the MRI this morning and I told them I needed more notice and I would call back to schedule.I dont sleep right so I take a sedative to sleep.There was no way I woulda been able to drive after having the meds in my system and sleeping 1 hr be4 that call.Jessie's doctors know I work nights and I told them from the door mornings were no problem as long as I knew beforehand.I would just stay up and sleep after the appointments. So the dr assistant calls me today and proceeds to tell me she is disappointed that I would not take my daughter to the appointment.I told her I work nights and have another sick kid.She had the nerve to tell me I shoulda found a sitter or left her here!Everytime I tried to speak she spoke over top of me.So I told her in no uncertain terms to never call me again and that the Dr better call me.None of this would be happeneing now if they had done they eye exam be4 the treatments and had listened to me prior to now.She told me she wasnt going to get into medical concerns with me!!! Its MY daughter! ok im done ranting for now cuz my blood pressure is through the roof!!

Ok so Jess finally finished her first 30 days of treatment.This consisted of treatment everyday infused through her PICC line.Once the first 30 days were up they remove the PICC line and she takes he treatment via a pen shot on Mon,Wed,and Fridays. Soooo,we go in today for the treatment center to teach us about the home injections and to have her PICC line removed and as the IV team is removing it she says "well no wonder that was so easy,it's only a mid-line and not a PICC".I askd her what she meant and she said that a mid-line is not nearly as long as a PICC.When I told her Jess was to have a PICC she seemed concerned and was asking what Jess was having infused.Now I know sometimes I can overreact especially when it comes to my children,but I also know that I saw something by the expression on that womans face. Then her Dr and the treatment team came in with a cake and a certificate congradulating Jess on her first month being done(which I thought was very sweet).When her dr asked how it felt to have her PICC line out,I said she didn't have a PICC,she had a mid-line.The main nurse that Jess deals with said "yeah so I just heard but we ordered a PICC". I aslo had questioned the nurses repeatedly through her first month because she wasn't getting ANY of the side effects they were determined she would get.Never did she get a fever or the flu-like symptoms.And when they asked daily about how she wa feeling she told them she was just tired alot.A nurse told me today that Jess is the only patient she has EVER seen that didn't get a fever especially the first night of treatment. And I also said something to our treatment nurse about the mid-line and she said she was shocked to hear about it.Then she said it's a good thing that she is receiving Interfuron because a different type of drug could have caused serious damage.Well the team that put Jessie's PICC line in a month ago didn't know what she was going to be receiving,only that she would have the PICC line for one month for cancer treatment.Atleast they didn't ask ME what she would be getting. So now I am wondering if the past month of treatment was for nothing? Maybe this is the reason Jess isn't having any side effects and why her white blood count,red blood count,platelets,along wih everything else is going down instead of up!!And the doctors just look at each other and whisper as they leave the room! Now Jess of course is telling me not to worry or be mad because because nothing happened.Well there are to many "what-if's" going around and like I tell her,I am entrusting these doctors with her life. Now I am beyond worried.I have a meeting planned with her doctor this week and I plan on going without her their so they don't try and sugar coat this.I didn't even find out until last week after nearly 5 months of surgeries and treatments that she is stage 3 Melanoma.What else aren't they telling me??

Well we started treatments last Monday.They told me Monday's will be the long days because they do the blood work every Monday to keep track and see how well the Interfuron is working.They told me this first month would be the hardest since she gets the Interfuron 5 days a week.Mainly the side effects are high fever,shakes,fatigue.Well out of the main side effects,Jess only had the fatigue and really bad headaches.Never did she get a temp above 100 and the doctors thought I was lying because the guarenteed me she would have the fever lol.I am thinking things are looking way better than expected.Til today! Today they did the lab work to compare it to last weeks base line.I can't type it all out but the results showed her white blood cells and platelets and about 5 other tests are wayyyyy below level.Now her immune system isn't working anywhere near what it should.When the nurse saw the results she said she was gonna have the doctor come and talk to us and that they would probably postpone her treatments a day or two and redo labs. I guess the doctor didn't agree because she gave the treatment anyways which makes Jessie's immune system even weaker!They are gonna run more lab work on Wed. and said if they drop anymore they will have to hospitalize her! On Christmas Eve?!?!?!?!?!?! Well I will keep updating and please keep Jess in your thoughts!!

So we went to Hillman Cancer Center today and the doctors say Jess will need to be on interfuron,a different type of chemo,for a year. With the interfuron there are less side effects.She wont lose her hair but she will have flu-like symptoms for a year.The symptoms will be at there worst for the first month. They will be surgically inserting a port sometime this week so they can start treaments on monday the 8th.I then have to take her to Hillman mon-fri to have the interfuron injected through the port. However after 30 days of this they remove the port and she will be able to have the injections 3 times a week at home for the next 11 months.This is actually the best way to go and Hillman is the best from what I have heard! Her doctor did also say that so far she is already 60% cured and that the interfuron will take that up to 85% cured Thanks again to all my friends who have kept her in their thoughts and prayers!!

Out of the 23 Lymph nodes removed on 10-29-08 the biopsy results showed the cancer hadnt travelled through them all!!!!!!! Jess will still need some chemo but this is great news!!! thanks for all the prayers and i will update more when they remove the drain tube next monday!

So this surgery was to remove all the lymph nodes under Jessie's right arm.Jessie's appt. was for 1:30 but we had to be there 2 hrs early for prep.She wasnt allowed to eat or drink after midnight the night be4.So she made sure she ate around 9 the previous night. We arrived at Magee where the surgery was taking place at 11 am.At around 1 pm Jess is getting pissed cuz she is hungry and the other people in the waiting room re bringing in food to eat while they wait for their family.They still hadnt taken her back to pre-op.At 2:30 not only is Jess pissed but so am I. They still hadnt called us back and I understand the Dr could have got held up but nobody informed us of anything.I went to the reception desk and complained and the woman called the pre-op and said,and I quote,"you need to come get this patient as her mother is being a bitch"! Pre-op did come and get us and I could hear the nurses bitcing about it.The nurse comes in around 3 to start an IV and collapsed to of Jessie's veins due to her being dehydrated.Mind you she hadnt eaten or had a drink in 18 hrs.So the nurse says that she would have anethesia do the IV and they would be in. At 4 I asked where the dr was and the nurse says I told you he would be in I just didnt tell u when.By now Im fuming.Finally the Dr comes in around 4:15.He actually asked me if he had me sign the permission slip in the previous surgeries or if Jess signed them.She is 13!!! The surgery took about 30 min. and the Dr came and told me all went well and I would be able to see her in about 30 minutes.This was 5pm.At 6:15 I got worried.I still hadnt seen her and nobody was telling me anything.Finally they called me back at 6:30.As I am sitting with her my cell rings and it is the nurses telling me I can go see Jess.When I said I was sitting with her she says"oh we came and got you already"?WTF is up with that? Finally at 7:15 we are getting ready to leave.The nurse then tries to explain the discharge instructions to my daughter instead of me.I said she is a minor and you speak to me not her!!! Another thing I noticed was there was only one child there to be operated on and that was Jess.She needed nurses who deal with kids not adults! And finally the worst part was on my way home! My cell phone rings and it is the hospital.The nurse wants to know which room Jess is in and where I am at.When I tell her Jess is in my car and I am on my way home the nurse asked...Oh we did her surgery already?...Are you serious!!! No communication whatsoever!!! I told her Dr that we would never be back to that hospital and we would be going directly through Hillman in the future!!

My beautiful 13 yr old daughter was diagnosed with Cancer today and would appreciate for her to be in everyones prayers.I wont really find out much until she sees the specialist on Friday and I will update this then.PLEASE keep her in your hearts. The appt. went well today.Atleast this dr wa able to give me some information unlike the dr. who removed the moles.Jessie does have a rare form of Melanoma that isn't usually found in children.On Tuesday Sept. 2nd we will start going through the Hillman Cancer Center which is widely known for the best of the best. Jessie will have to have more of her back cut out and skin from her leg to cover the wound.She will also have a Lymph Node biopsy to see if it has spread.I will update this more when I know more. Please keep Jessie in your prayers! 9-24-08 Well yesterday Jessie had the dye test to determine which lymph node was going to be removed to see if the Melanoma had spread.They discovered the Lymph was being equally distributed to 2 nodes. One under her arm and one in her neck.Today they removed both nodes and cut out more of her back.She will have a drain tube in her back for 2 weeks:( and hopefully the results of the node biopsy will be here in 7-10 days with good results. Ty to all my friends who have kept Jessie in their thoughts and prayers and please continue to do so!! 9-30-08 Well today we got the results of the Lymph Node biopsy and it confirmedthat the Melanoma spread to the node under her arm.Nothing was detected in the node removed from her neck.Unfortunatly this means that Jess will have to go through more surgery in about 3 weeks and have all Lymph nodes under her arm removed.Then we will "explore" other options after that as her doctor said. 10-21-08 Had a meeting with the doctor today to discuss some things about the upcoming procedure that he didnt inform me of in the beginning.I was worried after reading some of the side effects of removing all the nodes which include her arm filling with fluid and having to wear a compression device for the rest of her life.So my question was ...is the absolutly needed or is there something else i can do without her possibly having a lifelong deformity. The answer i received was horrible.If she does not have this done she will die!. Needless to say surgery is scheduled for Oct.29th.:(