This is an image that we hung in Mayleigh's hospital room to help her "grow flowers, not weeds"! We have needed to keep this in mind...especial over the last few weeks. Since Mayleigh had a very bad reaction one of the drugs (PEG+Asparaginase); she needed a different drug to replace this one in the protocol. As previously mentioned, the alternative drug is one that makes an intense protocol even more crazy as for every one dose of the PEG...we now need 6 intramuscular injections visits (done every other day) with 3 injections at each visit to replace the PEG. This also requires 6 extra trips 2+ hours each way to get to each appointment in order to get these injections. Determined to do EVERYTHING...we of course were ready to just keep driving and surviving no matter the the size of the hurtle that we keep having to face. Unfortunately the manufacturers of this drug Erwinase, had their own hurtles to jump. This is a rarely used drug worldwide and therefore the need is great but the demand is not. We were informed that she would be one of only 24 or less patients in the entire USA to need this drug. When it came time to order it, we and the doctors were ready with the pre-authorization from our insurance for the $19,000 per injection drug (unreal I know) and the research I requested on combining this drug with other chemo drugs (which in my research had shown a possible concern) had also been looked into. The pharmacists & doctors at OHSU reassured us that this combination of drugs should not have a negative reaction. However, we did not anticipate the doctors to call us saying "we cannot get this drug and we don't know when we will"! The manufacture of the drug has had to start over with production and approval from the FDA as it had an issue with the last batch manufactured. We don't know what it means for Mayleigh's cancer as the protocol with these drugs has proven to be quite successful but there is no research known for not having this drug available. Doctors cannot tell us what NOT giving this drug in a timely fashion will be for her. I wouldn't want to give Mayleigh a batch of drug that isn't up to FDA inspection of course but I hated not have this for her as we don't want the cancer to creep back in as we wait. Chemotherapy does reminds me of trying to grow a garden (non organically) as you treat it with horrible chemicals to KILL the WEEDS (cancer) but yet you want your veggies (or flowers) to grow and thrive in this same soil in the future. I would prefer treating the soil with nutrients it needs and pulling out the weeds but since the weeds in Mayleighs garden grew out of control... chemically killing them all is necessary and we will replenish her soil with the nutrients it will need once the weeds are manageable. Since I don't want weeds growing in her mind or ours, we will not help any weeds grow by giving them water (thinking the worst). We will envision her garden flowering with beautiful, healthy blooms of every color and water it only with the intentions to grow flowers. If "weeds" continue to grow...we will pull them up or continue killing them as they sprout knowing we'll see her garden bloom someday!
On Monday we learned that we would again have some "weed control"...the Erwinase was release from the FDA and Mayleigh was one of the first to get this new batch. We drove to Eugene immediately and Mayleigh did very well with the first injection. She is traveling again today to get the second batch plus multiple other chemo drugs to kill all the weeds in her garden! We are behind protocol by several weeks but the doctors feel like we do...that Mayleigh will still "BLOOM"! Thank you again to everyone for your continued thoughts, well wishes and prayers. We are grateful to have so many people ready to help us water Mayleighs garden!!
On Monday we learned that we would again have some "weed control"...the Erwinase was release from the FDA and Mayleigh was one of the first to get this new batch. We drove to Eugene immediately and Mayleigh did very well with the first injection. She is traveling again today to get the second batch plus multiple other chemo drugs to kill all the weeds in her garden! We are behind protocol by several weeks but the doctors feel like we do...that Mayleigh will still "BLOOM"! Thank you again to everyone for your continued thoughts, well wishes and prayers. We are grateful to have so many people ready to help us water Mayleighs garden!!
