15 yr. old daughter had a rough week, just an update

[bmcd]

Ashley had a rough week last week. Super Bowl Sunday, Ashley spiked a fever 102.5. There was a heavy snow storm that day (Buffalo, NY)and there was no way of getting her to her hospital. Ambulances refused to transfer her due to the storm. I had to take her to a small hospital close by (not very good with handling cancer patients). They found her to be nutrapenic with a white count of 1.2. Her red count was also low. This was 9 days after her second treatment. They gave her injections to stimulate blood cell production. One of the side effects (which they neglected to tell me) was bone pain. She developed a paralyzing back ache (said it was the worst pain she ever felt including the several surgeries that she has had) and had to be treated with morphine. The morphine mad her sick so I order zofran for her and that helped. She spent 6 days in the hospital due to the fever.  Finally got her out late on Saturday. The fever (as predicted by her hospital) was a drug fever. A day after no treatments (as ordered by her hospital)the fever disappeared. Unfortunately she has to go back to the hospital on Tuesday for her next treatment and won't be released until late Friday. All this and my wife went into the hospital to have a stent put in her kidney to drain, then this thursday goes in forlaser blasting the stones. She is upset because she won't be at the hospital with Ash. I hope everyone is as well as can be.
Take care, Bob

[bmcd]

My daughter was diagnosed with a grade 3 stage 3 immature teratoma of the rt. ovary. She had her ovary removed and the pernieal lining around her abdomin where the cancer had also spread. All of the lymph nodes in her back and pelvis were also removed and were clean. Right now she is currently having her third round of BEP. She is scheduled for 4 rounds. Her last will be March 6. The chemo she recieves lasts for 3 1/2 hours per day for 3 straight days with two weeks of recovery inbetween treatments. She also had a 4 mm mature teratoma removed from her left ovary. I worry about the future of her remaining ovary. She continues to develope cysts on the remaining ovary. Docs say they are normal but I'm really afraid for this ovary's future. She is doing pretty well with treatment this time but she has only had one day of treatment out of the 3 days for this round. I have been going through this for 3 months and I am not really new to it anymore so if anyone has any questions I may be able to help with feel free to ask and I will help in anyway that I can. And as always, any input that anyone can give me would be greatly appreciated.
Take care and best to all
Bob

[Amaris]

I am so very sorry for what your family has gone through. I completely understand the stress of it all & the constant worry. Your daughter had Ovarian cancer correct? I am so very sorry that she is having to go through all of this at such a young age. The only positive thing I guess that can come out of all this is the fact that after this battle your daughter will be able to take on the world. She will be able to handle just about anything life throws her way. I will pray for God to give her the Strength she needs to complete these treatments & survive this fight. May God bless your family always.
Amaris

[bmcd]

With children, they just wait for their own bodies to bring up the counts. If they have to pospone treatment, then they do. They then treat as soon as counts are up. As for the snow, Perrysburg is south of Orchard Park in what is called "ski country". We currently have 3 1/2 feet of snow on the ground with another 12 inches expected Tuesday night into Wednesday night and I'm sure it's not over. Lake Erie has finally frozen over, which will limit the amount of "lake effect" snow that we get for the rest of winter. That should help out some, but I expect that the snow will continue to pile up well into March. It is currently 8 degrees out with a wind chill of -20 degress. Bitter cold and no snow melt will insure that the snow will be around for two or three months yet. It usually does not completly melt away until early May.
Best wishes to all,
Bob

[freshair]

Sounds like a beautiful area. Thank God for that. I read your previous post that Ashley was not supposed to get the injections--now I have learned that younger patients don't get them. Is there any other way to raise the WBC when it's so low.

How awful--that doctor tells you that you don't understand how sick your daughter really is. I don't think he understands "HOW SICK HE IS" for saying that to a Dad that's been through everything you've been through.

P.S. How much snow do you have up there? Whew you don't need it now!

Be well. My very best to Ashley and your wife--  
Helen

[bmcd]

We live in a suburb of Buffalo called Perrysburg. Very country setting outside of Gowanda about 30 min. from Orchard Park. Have a farm style house with a large barn and 18 acres of land with a creek. Very nice, quiet, and peaceful. Plus not alot of boys in the area to worry about lol.

[freshair]

How sad. Your daughter, unfortunately needed those neupogen injections with a WBC like that since she had developed a fever which is VERY risky for infection.
So sorry to hear you had trouble with your daughter and the snow and your wife. Just make sure your daughter is ready for the next treatment. I am sorry about the pain, realizing with Becky that the younger you are the worse it must be. I didn't know that. My heart goes out to your family. Now you have to stay well! My prayers are with your daughter and wife. And everyone else on this site!!
Helen

P.S. Do you live in the Buffalo area? My niece lives up there in Orchard Park.

[bmcd]

Her doctors at her cancer hospital said that they normally do not give the shots to children. They were supposed to be consulted about treatments this hospital was doing. Appearently they were not consulted on everything. The floor doctor at this small hospital, who examined her for about 3 min. kept saying the fever is probably due to her tumors. At this time Ashley is asking about what tumors. I explained to the doc. that she has no tumors, they took it out when they removed her ovary. He didn't seem to hear me. He insisted that she had tumors because of immature blood cells they were finding. Had to get Ashley's hospital on the phone and they explained there are no tumors and the immature blood cells were due to the shots making her body produce cells when it wasn't ready. Getting her hospital involved really made this doctor made, because Ashley's hospital was now giving the orders and supported Ashley's discharge. The doctor told me that I didn't understand how sick my daughter really was. Wrong answer jerk. We will not be visiting that hospital in the future. The constipation thing worked out with a script from her hospital. When she told me she had gone I did the happy dance. Not sure if I was happier when she was potty trained or when she finally went that time. It's close. I was very happy because I knew she would end up in the hospital if she didn't go. Well as it turned out she ended up there anyway for something different. Oh well, just another bump in a long and winding road.
Take care,
Bob

[Tybear]

Oh my, I'm so sorry to hear Ashley is not doing well. The bone pain I can relate to - It's the worst pain I've ever felt and I actually did not complete my chemo treatment of Taxol because I couldn't handle it. My Dr said it's because of my blood cells trying to regenerate too quickly - I can't imagine what the pain would feel like if I had to have those shots. I'm surprised that they would order those shots with her WBC count at 1.2 - mine went lower than that once, and they just watched and waited - it came back up in a few days on it's own. Thank god - I can't afford those shots and they aren't all covered by insurance. My Dr said the pain is worse the younger you are, because your cells regenerate more quickly - I truly feel for your daughter. I just had surgery two weeks ago to have a stent taken out and the other one changed - your wife will be fine, but it must break her heart to not be able to be there with her daughter. Did Ashley manage to find something to help alleivate the constipation? I can't imagine all the morphine helped much, plus the Zofran - you have to do whatever it takes though, to make her feel better. You just take care of her and update us whenever you can - I know these must be some trying times for you and your family right now.
Take care,
Becky