Thursday, May 28, 2009

chemo day...

Everything went well today. Kaidan's blood counts were really good, her ANC is 2,300, so it has gone up A LOT since last week. We started her back on her oral chemos at 25% and I requested that we get her labs drawn weekly instead of every two weeks. We'll see how this goes, but hopefully it will be okay. Also, Kaidan has gained almost 2 pounds since last month!! I am very excited about that.

Porter has to get tubes put in his ears in the next week or so. He has another ear infection. :(

I'll update again soon. Thank you for all the positive thoughts and prayers.

Thursday, May 21, 2009

today's blood counts...

Kaidan's ANC is only 100 today. We cannot start her chemo back up and if she gets a fever she will have to be inpatient. This isn't what I was hoping for because her temp is still a little higher than normal. Right now it's at 99.5. I'm hoping we can make it through this holiday weekend without an ER visit!

Kaidan did go to school today, but she came home around 11 with stomach pain. She is just resting now.

Chemo is on Thursday of next week. It was Wednesday, but we changed it so Nate could come too. I really want to get some answers about Kaidan's counts. I'm worried that the chemo has done more damage to her bone marrow than they are telling us about.

I'll update again next week after chemo, unless anything changes before then.

Tuesday, May 19, 2009

no fevers!!!

So, Kaidan's temperature has just been hanging out between 99.3 and 99.8. I wouldn't even worry about it, but her counts were so low on Thursday. Her normal temp is usually between 96.9 and 97.5 or so, so even to be at 98.7 is warm for her.

I did call the clinic today and spoke with a nurse practitioner. After she called Kaidan a boy and I corrected her, she was really light hearted about it and laughing. I told her that I didn't know why she was laughing because I don't find it funny. I expect them to know that she is a girl...seriously, we've been going up there for almost 2 years now!! She tried to tell me all she had was a phone note in front of her, and it didn't have any info besides my name and Kaidan's name. I said, "So you don't have Kaidan's chart right there?" She told me she did have her chart and she was sorry. Maybe I over-reacted, but that is one thing that both Nate and I have disliked about Primary's. How can we feel like she is getting the best care possible if they don't even take the time to see who they are talking about. The should know she's a girl...PERIOD!! We wouldn't tolerate a doctor treating us that way, so why is it okay for them to treat our child that way?...IT'S NOT!!

Anyway, she said not to worry about the temp unless it gets higher or she starts feeling sick. I asked if we could have her counts drawn tomorrow instead of Thursday, just to make sure they are heading up, but she said no. She said it's better to just wait the extra day and let them get, whatever. I guess we'll wait until Thursday.

I'll update again after counts. Thanks for all the love and support and for listening to me complain.

Monday, May 18, 2009

home from school today...

Kaidan is home from school today. Last night she had a low temperature (99.7) and this morning it was 99.3. I don't feel good about sending her to school when I need to watch her temp. She feels least that is what she says. Her eyes sometimes tell a different story. Right now she's just sitting on the couch playing her DS. I've noticed lately that Kaidan has dark circles around her eyes, they seem to be getting worse. I don't know if she is having trouble sleeping or what. She has been really restless the past couple of nights, so hopefully that is all that it is.

We stopped chemo last Thursday, and she will have her blood counts checked again this Thursday. 50% chemo is not working for her, so we'll have to try 25% or possibly cut one of the meds that she takes. I have to talk to the doctor about that.

Preslee is home today also, she hurt her knee yesterday and is having trouble walking. (I'm thinking she just needs a little extra attention, so I've been giving that to her and hopefully tomorrow she'll be back in action.)

I'll update again on Thursday unless the fever becomes an issue.

Thursday, May 14, 2009

this weeks blood counts...

First of all, Kaidan is doing well. She has been having some issues lately with being tired and in a little more pain than normal, but she is doing okay. She has been going to school and feeling well for the most part.

Secondly, I got her blood results back and her ANC is back down to 300. Her other counts are okay, but that darn ANC is what keeps her from getting sick or from being admitted if she gets a fever. I haven't talked to the doctor yet, so I don't know what the plan is for her chemo. She's only on 50% right now and obviously her body can't handle that amount, so we'll see what they say.

I'll update again when I know what we will be doing.

Wednesday, May 6, 2009

swine flu vs. childhood cancer...

I copied this from another carepage. I thought it was very interesting...
**************************************************************************I sat down to blog about the swine flu in contrast to the childhood cancer crisis and found this and thought it was beautifully articulated and statistically solid.
The Swine Flu: A Crisis? You Decide!!!
It's all over the news. The Swine Flu has entered the U.S., and everyone is responding quickly. Here is what has happened already:
--Over 100 schools have closed.
--President Obama called on all schools with possible swine flu cases to "strongly consider temporarily closing."
--Congress approved $1.5 billion in emergency funds.
--Education Secretary Arne Duncan said that everyone involved in schools needs to "pitch in and do our part to prevent the spread of this flu virus."
--The Department of Education and the CDC have held conferences to give updates and advice for handling the crisis.
--WHO Director-General Margaret Chan has raised the alert level to phase 4.
--Shipments of the drug Tamiflu from the federal stockpile, enough to treat 11 million patients, have been distributed to several states.
--Dr. Jesse Goodman, of the Food and Drug Administration's swine flu work said,"We'reworking together at 100 miles an hour."
--Congress has asked Homeland to consider closing the Mexican border.
Here are the numbers: There have been 84 documented cases in the U.S. There has been one death, a two year old boy with underlying health issues.
Updates on the Swine Flu epidemic are all over the papers, T.V., Internet, and radio. You can't avoid it.
This is a crisis and deserves a fast response. Sick children, and the death of even one child, is a great loss. But I am a little confussed. I would like to point out some comparisons.
1) Since the outbreak in the U.S., there have been 84 cases of swine flu, and one death. Compare that to the fact that 12,600 families are told their child has cancer each year. That is 35 families every single day of the year.
2) The media tells us that the 84 cases and one death from the swine flu is a "crisis" and "epidemic". But do a google search on childhood cancer, and you will find the media consistently to childhood cancer, with 40,000 current cases and 2,500 annual deaths, as "very rare".
3) To protect yourself against the swine flu, you should wash hands, not touch your nose, and cover your mouth. You can even wear gloves and a mask. But there is no protection against childhood cancers. In fact, the cause of most childhood cancers is still unknown.
4) The swine flu produces severe flu symptoms. The effects of cancer are beyond description. So just consider this: Cancer is part of the body, so the treatment is a process of poisoning the child to the brink of death, then pulling back hoping they stabilize, then hitting them again. Over and over and over. Maybe a year, maybe 7 years. The resulting organ failures often cause more complications and deaths than the cancer itself. And then you wait and pray that it all worked. "Remission" only means they think they got. "Relapse" means they were wrong.
5) The government has opened up it's stockpile of flu drugs to fight the crisis. But there is no stockpile of cancer drugs. In fact, it has been 30 years since a new pediatric cancer drug has been developed. A 5 year study by the National Institute of Health concluded that new drugs for pediatric and adolescent cancers are not being developed because the profit margins are too slim. Therefore mega-doses of adult chemotherapy are administered to children, using a medical assembly line system called protocols. The great need for individualized care is ignored because it is not economically sustainable.
6) Congress has approved $1.5 billion in ADDITIONAL funding to fight the swine flu. With 84 infected people, that is $18 million per person. Childhood cancer received a TOTAL of $30 million over a 5 year period. That works out to $750 for each child currently fighting cancer.
So does any of this scare you more than the swine flu? It should. The emergency response to the swine flu had be great. But where is the emergency plan for childhood cancer? And where is the media attention? There is none.
Some might say these are not a fair comparisons. Well, in one way they would be correct. The $1.5 billion for the flu has been paid. The $30 million for childhood cancer was approved by the federal goverment as the Carolyn Walker Pryce Childhood Cancer Act, but has never been funded. Other issues of greater crisis keep taking priority, such as $120 million to distribute free condoms in 3rd world countries (Yes, really. It's in the stimulus package).
Some might still say my comparisons are still unfair, that I am not comparing apples to apples. But, just for the record, the U.S. apple growers got $170 million in the stimulas package.
Honestly, I am not criticizing the response to the Swine Flu. It is an appropriateresponse. I just do not understand why our children with cancer deserve less.
Please remember:
1 in 300 children will be diagnosed with cancer before the age of 20.
12,600 children are diagnosed each year.
3,000 will die of cancer each year.
Cancer is the #1 disease killer of children ages 1-19.
The cause of most childhood cancers is still unknown.
Only 3% of cancer research money goes toward childhood cancers.
There are currently 30,000-40,000 children fighting cancer in the U.S.
The number of children diagnosed with cancer has increased every year for the past 25 years.
Teenagers and young adults (ages 15-22) are the only age group that have flat or declining survival rates from cancer.
In the past 35 years ONLY ONE new cancer drug has been approved for pediatric use.
Since children can handle much more chemo than adults, most treatments are little more than mega doses of adult cancer chemotherapy treatments. The result of these high doses of chemo on children is a higher rate of secondary cancers.
For reasons not fully known, teenagers experience the highest rate of secondary cancers as a result of the high dose chemotherapy treatments.
Teenagers have the highest cancer fatality rate of any age group under 80. Their cancers tend to be much more rare, therefore lacking established treatments. Their cancers also tend to be far more advanced when diagnosed.
A 5-year study at Children's Hospital Pittsburgh of UPMC recently concluded that teenage cancer survivorship is lower due in part to a lack of access to clinical trials. They concluded: "Patients who are enrolled in clinical trials offering the most advanced cancer treatments do better than patients who receive conventional treatment. Adolescents and young adults with cancer are less likely than younger children to be enrolled in clinical trials."
I copied this entry off of the PAC2 Website
I don't know about you, but I could not believe these statistics. It's unreal and unfair!
If you haven't already signed the cancer awareness petition, please do.
Everyone is doing well around's nice! I'll update next Thursday after Kaidan has her blood drawn.

Monday, May 4, 2009

test results look great...

The doctor just called with all of Kaidan's results. Her bone marrowlooks good. It showed that her bone marrow is making red cells, white cells, and also showed that there were NO CANCER CELLS!!! Her metabolizing test came back as well, and it looked normal. She is not having trouble with the absorbtion of her chemo. That is good as well, except that we are still left wondering why her counts are having such a hard time recovering. Anyway...the doctor feels good about all of these results and thinks that most likely she has just continued to get viruses that are affecting her counts and her ability to bounce back is hindered because of the chemo. He wants to get her back up to 100% chemo as soon as possible, so we'll see what her blood shows next Wednesday when the nurse comes out to draw labs.

Kaidan is home from school again today. She had a scratchy throat this morning and she was very, very tired. I'm hoping it's just allergies because her throat looked fine and she seems to be doing better now after resting all morning.

I'll update again if anything changes, but hopefully you won't hear from us until next Wednesday. Thank you all for your thoughts and prayers as we waited for all of these tests. We are truly humbled and grateful that we have receieved so much love and support. Thank you!

Friday, May 1, 2009

May 1, 2009

I'm sorry it has taken me so long to get an update with a little more info in it. I have been busy and I think the stress of waiting for results was getting to me.

Anyway, things are going well around here. The doctor on Wednesday said that he doesn't think the metabolizing test will show that Kaidan is having trouble. Usually, I guess, we would have seen her counts struggling from the very beginning, and she started this chemo in April 2008 and we didn't have problems until November 2008. So, he feels like it's unlikely that test will come back positive. We should get those results next week sometime.

Of course, we are thrilled that the preliminary results for relapse are negative! We have been walking on pins and needles since Wednesday waiting for the results. I will be extra thrilled when we get the final test back and it's negative as well! I'm hoping by Monday I will have those results.

Kaidan isn't doing great, but she is okay. She hasn't had too much energy, and when she does get a little burst she plays hard and then crashes hard for the rest of the day. She hasn't been to school for 2 weeks. She is having a lot of aches and pains in her back, head, and stomach. She manages to get through each day with a smile (usually she's smiling, but she has been extra cranky lately) so all we can do is hope that this will pass. We did start her chemo back up at 50% yesterday, so we will check her blood again in 2 weeks and see how she does. Hopefully her counts stay good, since at this point we don't have any explanation as to why they aren't recovering.

That sums it up I think. I will update as soon as I get anymore test information, otherwise you can consider no news as good news. :)

no evidence of relapse...

We have the preliminary results back and there is NO EVIDENCE OF RELAPSE!!! I will update again later with more details...