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

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

Well we just got home from the hospital.  The news is not very different from what Gary and I expected.  The three spots are still remaining on her spine, the great news is they did not grow at all.  Because we have received all the chemo and radiation that Kelly’s body can handle, we are scheduled Thursday for a spinal tap to determine what those spots are.  The Dr.’s will be looking for cancer cells in her spinal fluid.  Although they do not feel they will find any cancer cells in her spinal fluid, this needs to be done in order to proceed with a biopsy of the spots on her spine.  If there are cells in her spinal fluid then we can call the spots disease, but Kelly did not have cancer cells in her spinal fluid when this all started so I feel this is just a formality. 

The biopsy will be scheduled for some time early next week.  I pray at that point we will be able to put some closure on this when the biopsy comes back as scar tissue.  If they do not come back as scar tissue, well I do not want to go there so let’s just pray for scar tissue.  I feel very confident about this biopsy, Kelly has been doing so well lately, it’s like she has returned to my daughter again. The little girl that I have so missed this past year. I should probably prepare myself for something, but everything in me just tells me Kelly will be fine and that the spots are scar tissue and this biopsy is just a formality to confirm what I already know.  I feel the challenge will come with her rehabilitation after we rule out disease. 

We have started back at PT two times a week, we need to build up her endurance, she tires very easily.  The amount of radiation she received on her brain, we may have some challenges with comprehension.  Her left side is still weaker then her right side, all things we can work on and that I am happy to work on. She has started eating again after 9 months of tube feeding.  I can’t keep her fulfilled.  She is eating me out of house and home.  Her tube feedings have been cut off completely and she is just receiving hydration in the evenings.  This is remarkable considering we are only 25 days post chemo.  Some children have a difficult time transitioning back to solid food after being fed through the veins for so long and it can take months for them to transition back.  Kelly started eating about three days post chemo, out of no where she said mom I want some chicken fried rice and has not stopped from there. When I asked her what her favorite food was she said mom, I love everything.  Music to my ears.  She wants pancakes at 9 pm, I’m making her pancakes at 9pm, and if she wants something I do not have in the house, I’m running out to the grocery store to pick it up even if it’s 9pm at night.  My girls actually sit at the kitchen table and eat breakfast in the morning together, they have not done this since the surgery last March.  All of us really have not sat down as a family and ate any meals together because we did not know if we were coming or going and had no schedule to our lives.  Everything revolved around Kelly and her treatment and last minute runs down to the hospital for blood transfusion, infections and so on.  After her surgery in March last year her weight dropped down to 32 lbs.  She weighed today at 52.5 lbs.  20 lbs in 10 months all while going through an extremely difficult chemo/radiation treatment. 

 When I say she is truly an amazing child, I mean she truly is an amazing child.  We are far from being out of the woods and still need to get through this biopsy next week so I ask that everyone continue to pray for Kelly.  I am very optimistic about this new today, but I need to be in order to get through the day and keep Kelly in good spirits, we are still dealing with a very terrifying disease. 

If anyone is interested in donating blood, there is a blood drive scheduled in Kelly’s name on Saturday Feb. 9th. in Willow Springs.  This is a replenishment drive so you do not have to be a specific blood type.  All blood donated will be turned over to the hospital “Donated in the name of Kelly Malecki”  I can sign you up for an appt time so you do not have to wait, so let me know if your interested.

I will keep you updated after the biopsy.  Thanks again to everyone for their continued support and please continue to pray.

Ellen

 I will let the pictures speak for themselves.  We will still go down to the hospital 2-3x a week for the next month or two for blood and platlett transfusions.  Kelly did so well and I could not be prouder of her.  The nurses had a special “party” for her on Thursday and presented her with a purple heart for completing her chemo treatment.  Kelly’s MRI is scheduled for January 29th.  This is it guys, we need it to be clear, no more chemo or radiation.  Please pray.

Love,
Ellen