Today is day 7 of our stay at COH. I am happy to report that William is doing a lot better and that all of his vitals have dramatically improved. Also, we are being discharged today!!
As you know William tested positive for Gram-Negative bacteria, yesterday we learned that the exact bacteria diagnoses is Stenotrophomonas Maltophillia, this is a rare bacteria for humans and apparently not easy to treat. I am just happy that we caught it early enough and that William responded so well to the 5 different types of antibiotics he received. Sensitivity to antibiotics is one of the items that makes this bacteria so hard to treat, thus the reason for William receiving to many, the only problem is that because William received so much, he developed C-Diff. C Diff is a serious bacterium that forms in the gut and causes all sorts of icky and smelly side effects. It is caused by antibiotics. In serious cases, C Diff can be fatal. If you want to know more, please click here Clostridium_Difficile.
Another obstacle we had to deal with during the week was Platelet Refractory. In laments terms, Platelet Refractory means that the body no longer accepts transfusions because of tolerance/immune system problems. The only way to treat this is for William to receive transfusions from a donor that is HLA (human leukocyte antigen) matched. Basically, each transfusion that William receives will need to be matched with a donor (think of it as getting a bone marrow transplant, specific criteria and biological matches are needed) As you can imagine, this has not proved to be an easy task. I got tested earlier in the week to see if I am a match, please pray that I am.During a normal treatment month, William receives around 6 transfusions. As you can imagine, this is a big concern for all involved as it may cause serious complications for upcoming the bone marrow transplant.
Since William got admitted on Friday, he has had a dry cough that has been plaguing us. An X ray from earlier week showed that William’s lungs appeared normal, ruling out any infection or fungus. The unexplained cough raised concerns that the cancer in his lungs returned; yesterday a CT scan was scheduled and performed. This morning we received the report, William’s lungs are fine. There is no presence of cancer in them. Also, the scan showed that William’s body is responding really well to the 2 cycles of chemotherapy that he received during the last 6 weeks. Two noted metastic tumors show decrease in size, and the necrotic tumors are all stable…This is AMAZING, and an answered prayer. Thank you God for healing the cancer!
Emotionally this has been one of the hardest weeks for me. The diagnoses of a bacteria rarely found in humans, and C-diff, combined with the complications of Platelet Refractory caused some serious anxiety, anger, confusion, depression and sadness. Today I can look back at the week and be grateful for the miraculous healing, creative doctors that are not afraid to think outside of the “normal treatment” procedures, and the support of my mom!
William’s birthday is on the 22nd. Some of our friends have already sent e-mails and text messages asking for our mailing address and gift ideas. Our address is listed below, as for gift ideas….anything airplane related, or a gift card to GameStop would be appreciated. Note, Gifts are nice, but the words of encouragement and love are always in need!
Mailing Address..
2201 N. Lakewood Blvd
Suite D, Box 294.
Long Beach, CA 90815.
We have a great weekend ahead of us and I am grateful that William's birthday celebration did not need to be cancelled or postponed ;)
Thank you for all of the support, love and words of encouragement! Please continue to pray for William’s healing.
This is William's journey and we will Keep on Keepin on' and Live Strong with God in our hearts and courage in our soul!
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