3 minutes

Madison went to the ENT today. She has had a rotting smell coming from her mouth/nose. We have been to the dentist, and had her MRI and everything there was great. However her MRI was of her spine and did not cover her head, so we were not able to see her sinus or anything in the head. Her neurosurgeon suggested we take Madison to an ENT. ENT - Dr A checked Madison out, and took a complete medical history, and said that he would feel better having a CT (glad he didn't say "to rule some things out" - those words, over 5 years later, still sting). It took insurance about an hour to approve the CT because Madison just had a scan and they felt another round of antibotics would do. With a little (or a lot) of convincing from Dr A's staff, her CT was approved and was done there in the office. Madison did great. And the results... 3 minute pause, 3 minutes of silence while Dr A scrolled thru her scans, 3 minutes is a really long time. Try it, watch your computer clock tick away 3 minutes. That is what I did. I couldn't bring my self to look at scans I know nothing about. So I watch the clock tick away 3 minutes. It felt like a lifetime. Then Dr A said NED - no evidence of disease, no tumors, no cancer. I cried happy tears. I wasn't prepared, going into this appointment, for the threat of cancer to be so prominent. I hate that this is our, wait that is selfish, this is her life. I'm so happy that the CT today and her MRI on December 8th were NED, but over 5 years later I still worry about everything. It's really hard. I want to not have to worry about one day hearing the words your daughter has cancer again. I don't want to ever worry about Madison not being a part of our life. If this is her last (fill in the blank - birthday, christmas...). She is amazing, beautiful, smart... I could go on and on, little girl. I love her so much. I want her to have a normal, beautiful, long life.    

5 years ago today

5 years ago today our baby girl had her first surgery (6 hours)
she was diagnosed with a stage 2 brain tumor June 14 2006
astrocytoma - shaped like stars
she did amazing
she is amazing
we are so lucky to have her
thank you God for the last 5 years

The tumor was in her spinal cord - literally inside
this caused her spinal cord to resemble a straw
we were told to be prepared for her to be paralized because of the
location and the nerves that had to be cut
we were told at best she would have several sever physical problems,
she would walk with a wide gait, she wouldn't be able to be potty trained...,
she wouldn't be the same baby girl we sent into surgery
and she's not
she is an amazing fighter
she has amazing spirit
and she came out stronger then ever
  

It is so hard to believe our journey with cancer started 5 years ago, that seems like a life time. Today Madison has a very minor physical issue, her thumb occasionally will go numb, tingle, drive her crazy. She was able to go to Kindergarten with the limited restrictions of no football, trampolines, wrestling, or tumbling. It reminds me to be so thankful that she doesn't have any other issues.
I love you so much Madison Rae. Thank you for teaching me to be strong, and how to fight right along with you.
  

Stupid Cancer Stuff

i love sleeping pictures - this one has her "bink" -pink blanket, "daddy bear", and "mommy cat", the 3 things that she will not sleep without.

No creative into…


Madison’s MRI has been scheduled for Monday April 4 at 8:00. She will be monitored for an hour, and then will be sedated and the scan will start at 9:00. I’m glad the scheduling department is still able to get her in early in the day; those appointments are usually reserved for the younger kids because they are not able to eat or drink anything after dinner the night before the test. I’m fully aware that Madison is a young kid but she started fighting the stupid thing when she was only 19 months old, and there are so many that are even younger. So we are lucky to not be scheduled later in the day.

I have already talked to Madison about her MRI, and “the mask” that will be used to sedate her. She still hates even thinking about the mask, so I gave her the option of having an IV started and they can use that instead of the mask. She opted for the mask, and made me promise to buy super smelly chapstick that we can use to coat the inside to help cover the stinky gas.

Madison asked why she has to have MRI’s… I briefly explained that she when she was little she was sick, that she had something called cancer, and it was in her spine, that the doctors did surgery (twice) and gave her medicine (11 months of chemo and 33 radiation treatments) to make her better (she asked if that was the applesauce with the powder in it, she was only 2 when she was on chemo, how could she possibly remember that?) and the MRI’s are to make sure it still gone. I don’t think she really understood, honestly I don’t want her to have to understand. I just didn’t want to lie or hide the truth when she asked. After our talk, I snuck off to the bathroom and sobbed. It just sucks.

So now we wait, 13 days, and I just can’t help but worry. Like for the past couple days she has had a stuffy nose and that is part of her head, which is where her brain is, that is attached to the spinal cord…. I know it’s crazy but as soon as we get the letter that it is time to schedule her scans I just get that crazy. Luckily, she has an appointment with Dr Moss, (I got permission to use his name) her neurosurgeon, April 4th as well. So we don’t have to wait to get the results (that she is all clear, and an amazing little miracle girl, that some how after having 2 C-spine surgeries is still able to hold her head up – he says this every time :), oh, and that he will see us again in 6 months).

So, we could use prayers, positive thoughts, that Madison’s scans come back clean. Also that she is safe and protected while sedated, and that she doesn’t have too difficult of a time coming out of anesthesia. And, that she is not so terrified of having the mask used.

exhale... a little

CT came back clean, not cancer. We got the results the same day Madison did the chest CT, I'm bad at updating. Madison is still coughing, but she is sick too. Her fever was 102 on Monday so she had to stay home from school. She was really upset and promised that she would cover her mouth when she coughed so she didn't get the other kids sick. I explained that this is a different kind of sick and that temps over 100 = days home with mom. We watched Barbie Fashion Fairytale 5 times, no joke. It was so nice to spend the day lounging on the couch with her. 

So back to the cough, we were told that something in her room could be causing her to cough. I had her take the 50 stuffed animals that she sleeps with out of her bed. She is down to 2 that she just can't live without. I washed her sheets (2nd time this week, this time with baby detergent). I vacuumed her mattress and under her bed. I dusted all the wood part of her bed. And... she is still coughing. Dr M (ped) said that if she is still coughing this week to bring her back and she will refer Madison to a pulmonologist. I will see how she is doing Friday.  

holding my breath



 Madison had an appointment with her pediatrician today. She has been coughing every night for over a month now, but just at night. Dr M checked her breath sounds, did several breathing tests, gave her a breathing treatment, did another test, and everything came back normal. Madison does not have drainage, bronchial asthma, or anything else that Dr M tested for. So a chest CT was ordered, "just as a precaution". Madison did great getting through all the tests and the CT, and now we wait. And I worry. Mostly because I have read that one of the first place brain cancer spreads is to the lungs. I know that is what Dr M is testing for, I told her that I read too much online and ask if she is checking for spreading. (we don't say cancer, because Madison still does not know that she had cancer) Dr M said it was just a precaution, but yes that is what the test is for. I love that she is so cautious with my daughter, but really it's just a cough, just at night.... why does everything have to be a scare?

the call

this picture has nothing to do with the post,     other then I should be worrying about teaching my Madison how to swing, not worrying about her cancer

i got the call from Dr M office
Madison's 6 month scans are scheduled
she will have to miss school
follow up appointment made
more missed school
she loves school, she loves KJ too and he is in her class ;)

and I am...
i don't know. i, as always, really think she's fine
i just hate that she has to go thru this, it's not fair
it's not fair that every 6 months J and I have to go thru this
i know that is being selfish and that Madison is the one that has done all the work and that she is amazing and strong, and that we have been very lucky.
but this time i feel like being selfish, i hate that we all have to do this.

prayers, positive thoughts are always welcome/needed.