We are home again and because Kennedy is sleeping (thank God for Benadryl), I thought this would be a good time to update her site.
We did come home Saturday night but as you read, she went home without TPN or an NG tube and became dehydrated very quickly. Monday she was very lethargic and was only awake for a total of 2 hours, so back the clinic we went. Her liver counts were up again and she was very dehydrated so we received a bolus of fluid and went home. She was due back at day treatment on Tuesday morning so they felt okay about this decision. The insurance has been a huge pain and was the reason Kennedy went home with no nutrition despite not eating or drinking.
Tuesday she was still pretty out of it when we went to day treatment. We had to be there at 9am for blood draws and she was supposed to have physical therapy at 9:30, however she was so out of it that Amy did not think it would be helpful to try and work with her. Kennedy was scheduled to get a lumbar puncture (LP) with intrathecal (in her spinal fluid) Methotrexate, IV Methotrexate and Vincristine but when the nurse practitioner arrived to do her procedure she was very concerned about how unresponsive Kennedy was. There was some panic as she confirmed with the oncologists about what Kennedy was to receive. Kennedy’s liver counts were still high and not in the normal range and her white count was very high. Her white count is where her leukemia is so they were very concerned that she would relapse and even said that without treatment, a relapse would occur within the next week. They went ahead with the LP and intrathecal Methotrexate but held off on the rest of her chemo until they had consulted with other oncologists at hospitals such as Duke University, Children’s Hospital in Seattle, University of Minnesota, MD Anderson in Texas and Doernbecher. They continued to hydrate her in hopes that she would become more responsive. After several hours and many tears they told us that they had no choice but to give her chemo and hope for the best. At this point in the game if we give her chemo we take the risk that her recovering liver will not process it and shut down again and would be fatal, or that we do not give her chemo and her leukemia relapses and because she would not be able to withstand the extreme chemo/radiation necessary for remission/transplant it too would be fatal. All of our faith rested in the hope that Kennedy’s liver had recovered ENOUGH to process the chemotherapy and that we could give her enough chemo to stop a possible relapse. Needless to say, with Kennedy’s condition, they kept us overnight at least. It was all I could do to wait until the next morning for the blood work that would decide her fate. It was a very LONG night. Oh, not to minimize this but they also placed an NG tube onTuesday to insure that Kennedy would get nutrition and medication.
Wednesday blood tests came back very positive. Not only was her liver handling the chemo, but her white count had dropped significantly over night. What an answer to prayer! She still had more chemo to recieve and had her PEG injections later that day. She struggled with her NG tube but did so much better than last time she had one. We switched her food to Peptamen Jr from KinderCal because it is easier to absorb. It is $8 per can and when we received a 4 week supply, it was over $1300!!! And all of our formula feeding friends thought their babies’ food was expensive! At this point she is only tolerating about 1/2 of what she needs though. I personally think that it is psychological because she has no problem keeping it down when she’s asleep. We could not find a company that would allow up to have a pump though because of our insurance company. Now they have changed their story and decided not to cover anything that is under a “clinical study” despite the fact that all of her treatment is FDA approved and would not change whether she is on study or not. AALL0232 is a compariston study that is looking at which of two common steroids is better during induction therapy and whether or not it is better to give high dose Methotrexate or increasing dose Methotrexate during interim maintenance. All of this has been common practice in treating ALL for a long time. They said that her treatment does not need to change, just how it is labeled. The biggest problem with this is that through the study, they will be able to help other kids, especially those that could have the same serious complication that she did. Without this study, there will no need to keep permenant, accessible records regarding her treatment that could save the lives of other children. We are appealing their decision based on the fact that we were already on this study prior to enrollment and that all of her treatment is FDA approved. We are consulting with a national patient advocacy group and our own local insurance commission. The hospital is working to get us charity care for our ever accumulating debt and Providence Home Health is also working with us to pay for Kennedy’s nutrition needs.
After working all of this out and watching Kennedy’s numbers get better, we were able to take her home on Thursday. It has been interesting getting use to the pump but I think it’s getting better. Last night, Keith and I went to dinner at Chang’s then went and picked up a few things at Target. How nice to get out of my house and not be constantly needed. I really appreciated the rest. Then my mom and I went to Costco today and I got a frantic phone call from home. Keith was moving Kennedy and accidently pulled her NG tube out (only about 1 1/2 inches), I told him to tape it and I would be home soon. I checked her placement and it seemed to be fine so I left it alone. Kennedy could not just stop picking at the bandaide and pulled it out another 6-8 inches! I called Dr. Norwood and he said that because I could still hear air going in to the tube, that I should just push it back in and check again. I gave her Benadryl to calm her down but as I said when I started this journal-she’s out cold. I guess I’ll just leave it where it is for right now. For those of you who love talk radio (specifically conservative) I was on the Jeff Kropf show (Saturday and Sunday from 6am to 9am) on KXL (750AM) this morning. No, I did not tell anyone and the only reason my family got to hear was because I had to make the phone call from home. I really appreciate Jeff bringing Kennedy’s story to the attention of others. It helps to have so many people praying for our little girl. I will be doing periodic updates so check back for more info on that.
Please pray as Kennedy has a therapy evaluation this week because of her need for more intensive therapy. She is not hardly speaking, and when she does we can rarely understand her, she is very weak and can not bear weight. They will be determining if she needs very intensive outpatient or inpatient therapy.
Her and I will also be spending time with Russell from the Molalla Pioneer this Tuesday to talk about our journey so watch for that link soon!
Last year I was really struggling in my faith and I specifically remember asking God to show Himself in such a way that I could not possibly question His existence or His hand in my life. I had no idea then what I was really asking for but He has shown Himself to be the great I Am. Kennedy’s faith has carried us through so many times and I believe that she is closer to God than any of us could possibly fathom. I highly recommend a book called “Tuesdays with Morrie,” it was literally life changing for me and has helped me heal so much through this last month.
Continued prayer for Oliver and please pray for Gage who is having kidney problems due to chemo and Joshua who will be having surgery to correct damage done as a result of radiation therapy. Congratulations to Warren who has completed chemo and is doing awesome and to Rebekah who is heading towards her last chemo!
“It’s not the size of the dog in the fight, it’s the size of the fight in the dog.”
– Mark Twain
Thanking heaven that our Kennedy has a lot of fight and refuses to give in to statistics!
Kennedy: Gaelic “hard headed warrior”
And we worried that it was too strong of a name for a girl! 🙂
Love-Hope-Faith,
Melenie
