Caring for Kelly Blog

Well today was the day that we met with the Dr.’s regarding Kelly’s new course of treatment.  I have to say after a weekend of letting this all set in, I am in better place then I was last Thursday.  We are still in a much more difficult place then if the biopsy came back as scar tissue and do not want to give false hope, but why would things be easy, after all I was an Eastman before I got married and had to learn everything the hard way. 

When we sat down with Dr. Jason, I had 14 studies that I wanted to go over with him - boy did he earn his money today.  He was great and went through each study and went over the pros and cons of each study and he answered every question I had for him.  He told me he felt like he was back in front of the medical board.  What amazed me is he knew almost everything about all the trials and the specific drugs that were being used in these trials.  We decided as a team what the best course of treatment would be for Kelly, that’s what I respect so much about him is that he considers us all a team.  It’s not just his decision and that’s it, he listens to what you have to say as a parent, a family member and a friend of the family. 

Kelly will not be going on any actually trials, but we will be using drugs from these trials, making it up as we go along and what Kelly’s body tells us what works and what does not work. Not all the drugs will be chemo drugs. The theory behind that is we have already hit her with very high doses of chemo and there are still active tumor cells present.  We will be treating her with a drug that will actually go to the tumor and cut off blood supply to the tumor, in theory killing off the tumor.  The other drug is a chemo drug, but Kelly will be receiving such a low amount that she really should not see many side effects that she has seen in the past and should continue with how well and strong she is feeling today. 

 We will still be doing our “Make A Wish” at the end of March and I am free to take Kelly to Kentucky to see Aunt Debbie in between treatments or anywhere else for that matter.  Her counts should not drop so low that she will be able to continue to get stronger and stronger and go places without me worrying as much about her catching something, I have my shopping partner back. She will be getting these drugs every two weeks at the day hospital (outpatient) and it will take about 4-5 hours each visit.  There is not much documented evidence on this cocktail of drugs for medulloblastoma, but it has been used in other brain tumors with some response, so I am asking everyone to pray louder and louder to God. We are in unfamiliar territory here and need to just take this day to day hour to hour.

I have come to the conclusion that we have our miracle, and her name is Kelly.  What we need to pray for is a new form of treatment for Kelly to be part of that will go down in the medical journals as a new way of curing medulloblastoma.  My mom told me God has three answers - yes, no, and not right now.  I think His “not right now” answer for us is because Kelly needs to be part of something new, something that needs to be invented so kids down the road who will be in Kelly’s situation will be able to be cured like Kelly will be.

Ellen

I am sorry to inform everyone, the biopsy has come back as disease. There are not many options for Kelly so we need to pray for a miracle.

Ellen

To update everyone with today, Kelly’s surgery went well.  She handled it like the amazing child we have all come to know she is.  Because Kelly needed to have a tube put down her throat for the anesthesia and her front tooth was loose she received a surprise when she woke up.  Her tooth fell out and the tooth fairy visited her in the operating room.  Actually the Anesthesiologist had to remove her tooth so it would not go down her throat durning the surgery, but for Kelly we will stick with the original story.  The “tooth fairy” actually left her $1.00 for her tooth for when she woke up.  I gave the Anesthesiologist a hard time and said with the type of money he makes and a house in Winnentka the “tooth fairy” could have left a little more. We have had this Anesthesiologist in the past and have a great relationship with him and he is always fun to joke around with.  That’s one thing for sure I can say about this hospital is that their staff is hands down the best.  They take care of the family, not just the patient.  Anyways, as far as the biopsy goes, it goes like everything else has on this journey.  The Dr. could only get a small sample of the tissue and did not want to waste it on a frozen biopsy on the table.  So we will not have an answer until Thursday at the earliest.  The surgeon did tell Gary and I that the tissue was very tough to cut through.  Tumor tissue is usually very soft and scar tissue is usually very tough.  Not enough information to give a medical diagnosis, but enough give Gary and I that little extra hope we will need until the final results come on Thursday.  As I write this e-mail Kelly is sitting in her bed eating pancakes and sausage drinking milk and watching Madagascar, not complaining about anything, just happy to be eating her pancakes that she waited 15 hours for.  I’ll update everyone once we receive the final results, until then please continue to pray as loud as you can and to also thank God for what has been accomplished so far.

Ellen

As I sit here and listen to Kelly singing her heart out with her headphones on to Alvin and the Chipmunks, I can’t help but have a mom moment.  Little does she know that her biopsy has been scheduled for this Tuesday, her spinal fluid is clear of any cells, but we were expecting that.  I received the call late yesterday afternoon and all I can say is that it put a huge pit in my stomach.  I spoke with Wendy, Dr. DiPottrie’s nurse practitioner.  For those of you who remember he is the Dr. who did Kelly’s first surgery and Wendy was the one who helped me through the shock of everything.  What I was surprised about is that this biopsy is more of a surgery.  It will last 3 hours with a recovery in the hospital for 3 days.  Kelly will not be happy about that.  I can’t say that I am either.  We will not be staying on the 4th. floor, with the nurses we have come to know and feel very comfortable with, but rather we will be going back to that horrible room 321.  The room we were in for 9 days after Kelly’s diagnosis.  I think talking to Wendy made alot of memories come back and again made this all so real.  We will have our answer - yes or no.  There will be no more wondering or waiting.  While that is good, it is also very scary, very definitive.  I told Dr. Jason Kelly’s oncologist, that it has to be scar tissue, we have come to far we can not go backwards we need to keep moving forward.  It has taken me almost a year to recover her from all of this and she is still not where she needs to be.  When Kelly is at home with us, there is a sense of safeness for me.  My daughter is home with us.  I play with her, I feed her, I watch her fight with her sister and we have a new “normal” that we go through daily.  I don’t feel she is a sick child, she is my daughter.  I guess in the back of my head I know what she has been through and what is possibly ahead of us but for the time we are at home, Kelly is safe with me.  When we are at the hospital, I know she is under the best care possible from the Dr’s and nurses but it’s not home with Gary and I.  I’m not sure if that makes any sense.  So again I ask for your prayers for a safe surgery, but also for a negative biopsy.  I did tell Wendy that her and Dr. DiPottre started all this last March with the horrible news, they can now finish it up with wonderful news of a clear biopsy.  Talk about going full circle.

Ellen