January 29th Update
Tuesday, January 29th, 2008Well 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.