I’ve posted on Facebook but honestly did not have the energy the last two nights to update here. We are exhausted. The good news is we are home! We are trying to navigate the new normal dragging around an IV pole for Will’s feeding tube and trying to keep him from ripping it out. He loved his nurses so much he ripped it out for a second time before we discharged so we could stay a little longer and wait on xrays.
Being home is bittersweet, I almost wish they would have sent a nurse with us or kept us at the hospital just to make sure everything was ok. If I wasn’t a helicopter mom before I sure am now.
So what’s next? Tomorrow, Thursday we go back to Cook’s for an outpatient appointment. Depending on Will’s hemoglobin levels we may have to have an outpatient blood transfusion. Next week we go back to stay for his next chemo treatment. We are currently looking at going back next Friday and staying until Monday or Tuesday.
I still do not want to accept our son has cancer. Today he is acting more himself smiling after every fart and “talking.” We even ventured into the backyard for a few minutes and he sat in his walker and let me push him into Trooper (our dog). He laughed when Trooper ran from us. The whole time he was laughing I just kept thinking everything was back to normal then I remembered it was time to change his feeding bag.
I’ve been asked what caused his cancer. Nothing. Nothing caused it. I fed him organic formula,organic baby food, and used organic wipes and diapers, you know because I didn’t want my kid to get cancer or something. Well he did and there is nothing we could have done to stop it. Hepatoblastoma happens to one in a million kids. He is literally one in a million. The plus side is that through the research Will is a part of hopefully doctors and scientist will be able to find links to this cancer and stop it from occurring to another innocent baby.
Billy’s very good friend Carl, who married us, set up a GoFundMe account for Will (which we plan to itemize here and what does not go directly to Will will be donated to hepatoblastoma research, the clinical trial, and/or Cook’s Oncology). We are overwhelmed not only with the support and generosity of this account but from the calls, text, gift cards, cards, gifts, and food. Most of all the prayers. I know God hears us. I see it every day in Will.
Last night Will had finally gone to sleep and I sat down in our hallway overcome with emotions and exhaustion when our neighbor/my cousin text and asked if we were home. She brought us dinner, which was delicious by the way. We’ve always been the “we don’t need help” type of people but y’all have to know just what we need when we had no idea. We are forever grateful for you all.
Please continue to pray and pray hard for Will.
30 days of Hope
Day 3 Exodus 15:26
26 He said, “If you listen carefully to the Lord your God and do what is right in his eyes, if you pay attention to his commands and keep all his decrees, I will not bring on you any of the diseases I brought on the Egyptians, for I am the Lord, who heals you.”
Day 4 Exodus 23:25
25 Worship the Lord your God, and his blessing will be on your food and water. I will take away sickness from among you,
Day 5 Isaiah 41:10
“So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.”