Sunday, February 17, 2008

Sunday starts another week of getting poked for Kevin

Today Kevin has his Spinal MRI to see if there are any tumors on his spine. He will be put to sleep for the test because it takes 2 hours. Please pray that the test results are clear for the doctors to read and that they are negative for more cancer growth. Kevin’s lumbar puncture was suppose to be on Friday but I luckily learned on Thursday that they were hoping for an opening at 9:30am this past Friday, there wasn’t really actually an appointment. So it is now set for Tuesday. Hopefully this one is for real.

I am trying to pull Kevin’s medical records from CHM to get a couple of second opinions because as I like to say, its not like Kevin just has the flu. But for some odd reason CHM has not updated his file at all since Feb. 4th. So his last CT scan is missing, there is no operative report for his operation on Thursday Feb. 7th. Which is odd, because when I went to pull his records on Feb. 4th I was able to get his operation reports and everything else. I can see difficulty ahead.

I was really concerned and quite honestly upset with our pediatrician when Kevin was first admitted to the hospital. I felt that they weren’t interested in handling Kevin as a patient. I really felt that they had abandoned me to navigate all of this medical crisis alone. But the doctor who owns the practice has really recently step up and given me the most reassurance that it will be me, not any doctor, who will know what is best for my son. I really appreciate the Saturday afternoon phone calls she made to help me try to get Kevin’s records and talk about getting second opinions.

A couple of moms, from around the country, who’s children were also diagnosed with medullo have contacted me and are helping me understand the different treatment options and filling me in with their experience (and also a local friend who attended Medical school - thank you Abi!). It is helping me emotional get a grip and keep things moving forward for Kevin. As I have learned the hard way no one else will be a better advocate for Kevin but his own parents, and moms are good at becoming experts when their childs life is at stake. The more educated we are the better decisions we can make. Radiation is the scary thing because it can reduce a childs IQ as much as 25% but it is the only thing proven so far to kill off the cancer for good. If this cancer that has invaded Kevin’s body comes back, from what I understand, it will most certainly be lethal. Right now, hopefully we have a chance of saving him.


Michael said...

Hi Rachel,

It sounds like you are doing an AMAZING job and I hope you take some time to feel good about yourself. Your confidence in your self will keep you strong for Kevin. I am quite happy to hear that you have great support through this. With such wonderful parents and support, I am confident Kevin will have what it takes for his new "adventure".

Medical records are a pain to retrieve to put it lightly. There is sometimes a delay before the record is put in the chart. Then, there is always a delay before these records are made official and sent to the medical records dept. for you to retrieve. You obviously don't have time to wait right now so I recommend you complete a records release form and "sweet talk" one of the nurses or Drs. to make a photocopy of specific records from the chart such as MRI reports, surgical reports, labs, and medical notes (I don't know the correct term) for Tumor board mtgs and Dr. notations. This can add up so maybe start with a few at a time. Also, go to the radiology dept. to get copies of the scans (MRI/CT) on CD or if necessary on film and the MRI/CT reports if you still need them. Finally, to prepare for 2nd opinions request a microscope "slide" of the tumor specimen the pathology dept. They will often send it directly to the other hospital for you. Obviously see what the other hospital needs, but usually the most important things you will need for a 2nd opinion will be the pre and post surgery MRIs/reports, the pathology slide, and the labs. The surgical and other reports are nice too but often not as critical for the 2nd opinion.

And yes it is maddening how alone you can be navigating your way through this especially when 2nd opinions are involved. The medical establishment is limited in providing personal advice so do your best to get off-the-record opinions from Drs and of course continue to tap your network of other patients and caregivers.

You are certainly are doing the right things and I really am amazed how well you as caregiver/decision maker are doing. You ARE doing all that you can and Kevin will be served well by your tremendous physical and emotional support. With this support, Kevin will succeed on his journey through cancer.

With continued prayers and love,

Mike DeGuire and family

NaKee' Natural said...

I have been following your updates. You are doing a great job! You are right about parents being our children's best advocates. I have had to step up many times for Jonathan when I felt things weren't quite right. It is not the most comfortable place to be, that's for sure, but we have to do it. If you ever need to call, please feel you can. I hope some of the info I have given has been helpful.

I would encourage your friends and family to put together a benefit or fundraiser for your family if you are ok with it. You may or may not think you need it now, but even with good insurance, "cancer" is very expensive. There are so many more expenses than just the medical bills. It was a hard thing for us to accept at first, but really helped! Money, gas cards, and food gifts are most wonderful too!

Your family is in my thoughts and prayers!

Candy, Jonathan's mom name:jonryan78
also NaKee' Natural