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Baby Nicholas had his repeat ABR and well - I am just sick and heartbroken over the results. We were told that he had high end hearing loss, we expected that but we were also told that he had a grade 2 hearing loss in the normal range. It's explained like this, if you say the word Dogs ... he hears it but the "S" is quieter than how we hear it. At this point it isn't bad enough to need hearing aids. What that means is that the Cisplatin (chemo) has already effected his hearing greatly. We are due for two more round of this drug and to me this hearing loss is unacceptable! I am having a hard time with it because for Baby Nicholas hearing was not a deficit after surgery and chemo is only being done to in Dr. Merchant's own words, "Buy time" because of his age and needing his brain to develop to 12 months of age.
Upon learning these results, I immediately have contacted all our team here at St. Jude, Dr. Gajjar, Dr. Wright and Dr. Merchant and addressed my concerns and told them we need to re-evaluate our plan now because Nicholas is due to start more chemo on the 13th.with them on the 12th and when we met, Dr. Gajjar could tell I was extremely upset and explained the pathology to me once again. He wants us to finish out the regiment but after speaking with audiology he agreed we needed to adjust his drugs and we are now switching from Cisplatin to Carboplatin, which is said to be fairly equal but the risk of hearing loss would not be a factor. He also said that Carboplatin is harder on the bone marrow - so recovery will be harder for Nicholas.
I of course was extremely worried about switching these drugs, I feel like I am going off their best path and doing my own path - but this happened for a reason - the hearing loss isn't terrible at this point and it can improve. God gave me the ability to understand medicine and understand what we are dealing with and He gave me the mind to research, He gave me Nicholas because He knew I would do everything I could for him and I always will. He knows my heart, my dedication to my child and the love I have for my family. So I will trust this choice to change courses for our Boy and pray God keeps him stable.
Dear Lord,
You allow changes for a reason ... I won't question that - I just pray that these changes are from you ... I am so thankful you brought me to St. hude - without them the regiment they planned to put us on back home was even stronger and longer with Cisplatin - our son would have been deaf. You have your reasons and though I am so sad over him having any hearing loss - I know you can change that and that I will trust in you today.
