Courage for Kennedy – Journal

June 29, 2005

Category: Treatment – Melenie – 2:07 pm

The good news is that this week we are not doing 4 days of Ara-C. Kennedy did have chemo yesterday so she’s pretty wiped out today but at least we are home. They did a lumbar puncture with more Methotrexate into her spinal fluid. She has a silver dollar size bruise on her back which has never happened before but she is not complaining of pain. She also had Vincristine, which causes her to have “needle poking” sensations but giving her Benadryl seems to help with that. In addition to these, she had two shots of PEG, which is made from the E-coli bacteria, in her legs. These are not actually bothering her but this drug has a huge list of side effects both long and short term. One of the benefits to being on a research program is more information and the doctors are very interested in the effects and progress of her treatment. I have certainly appreciated all of the concern.

Some people have been concerned at the amount of lumbar punctures Kennedy has received (5 so far). The reason they are doing them, aside from dosing the Mx into her spinal fluid, is to check for leukemia cells in her CNS (fluid). This is a very serious possiblity and her doctors were extremely surprised that with her levels of WBC (200k) that she did not have this at the time of her diagnosis. By putting the Mx directly into her spinal fluid, they hope to prevent Leukemia cells from congregating there and reduce her chances for a relapse and need for a bone marrow transplant. This is also why she will be having radiation therapy to her brain. While they are giving her high doses of chemo drugs in her blood, these do not cross over at the same level into her spinal fluid and brain, therefore allowing leukemia cells to build up there. It seems extreme to us too, but healing Kennedy is the ultimate goal.

Kennedy is also being treated for a mild fungal infection which is the result of two weeks of very high dose antibiotics. This is worrisome to me but does not seem to be bothering her.

Oh, we purchased a racing stroller for Kennedy with some of the funds from the poker tournament. Now I can take her for walks around the property and she loves it. It is so good for her to be out in the fresh air. It also fits better in the trunk of the car and holds a lot more weight than a standard stroller. Thank you again to those of you who helped out and raised the money at the tournament. I understand everyone had a wonderful time.

Please see future entries for further information regarding fundraisers. July 16th there will a Spaghetti feed and raffle and July 30th a plant sale/car wash at Platt Electric in Gresham. Future fundraisers include a fall Spaghetti feed, bowling tournament (in which kids can also participate) and garage sale.

Please continue to pray for:
-Kennedy’s fight with leukemia
-Kennedy’s recovery and minimal effects from chemo drugs
-Austin’s emotions and dealing with the changes in our family
-Keith’s work/benefits
-Melenie emotional well being/opportunities

Thank you all for the wonderful emotional support over the last 7 weeks. We could not have done it without you.


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