Nico was able to come home this past Sunday which we were very excited about! We just aren’t used to being apart from each other so these hospital stays are hard on us. By Sunday morning, his ANC counts had bounced way back up so the oncologist was pretty sure the fever was due to his levels having dropped to 0. The cultures were negative for bacterial infections and although he still had a slight fever she was fine sending him home because the fever was coming down and his levels were good.
Monday was a rough day. Lack of sleep, being overwhelmed with the news of radiation, physical pain and frustrations with breastfeeding, all converged and my hormones must have pushed me over the edge because I literally started crying that afternoon and could not stop. Praise the Lord, Mom and Vanessa were here to care for Nico and V while I holed up with Nali and tried to rest and compose myself. I needed that release. At first I worried about the boys seeing me cry but it became a good learning opportunity. The boys would come in to check on me periodically. I explained to them that sometimes mommas feel sad after they have their babies and I felt sad that day but I would hopefully feel better tomorrow. They held my hands and prayed for me and my heart felt it would burst. I cried some more but those tears were less sorrowful and more thankful. And I did feel a lot better the next day and the rest of the week. Apparently, I was overdue for a really good, ugly cry.
Nick had been out running errands that day and when he got home Vanessa informed him that Nico’s temperature had been going back up. Sure enough he and Nico made a trip back to the ER that evening but he didn’t have to stay because his fever had come down to normal an hour or so after they got to there. Perhaps it was all the water Nick got Nico to drink earlier in the attempt to bring it down and save a trip to the hospital. Oh well.
Breastfeeding has been challenging still. I had wanted to meet with an Lactation Consultant in person to help us rule out a tongue tie and know how to stop the pain but I wasn’t getting any call backs. My very resourceful sister got us an appointment at the Vancouver Breastfeeding Center on Thursday during Nico’s chemo appointment at BCCH. It worked out well and the doctor was able to rule out a tongue tie. She said that Nali’s lower jaw is recessed back but we can work around it and it will get better as she gets older. So far I still have some pain on one side but we have been able to power through. Nico’s chemo yesterday went well. He finally was able to go and play in the play room! He has had the corona virus, and Influenza B virus and a continuation of the flu virus which placed him on isolation and made him unable to be in the common areas such as the play room since probably January. Yay for the little victories!
Last Friday Nick received a phone call from Nico’s radiation oncologist informing him that they had determined proton radiation would be best for Nico’s situation. Canada does not currently have any proton radiation centers and so they send patients to receive this treatment in the States where it is available. Mayo Clinic in Scottsdale, Arizona offers proton radiation and that is where Nico will be receiving his radiation beginning mid April. He is scheduled to have his planning CT scan and to meet the radiation oncologist at Mayo on April 10. So we will be flying in a few days before that. The radiation will begin a couple weeks after the planning scan and it will last for 28 week days. There are still lots of details we need to work out. Where will we stay? We plan to stay with Nick’s mom for the first little bit but her tiny two bedroom condo may not be conducive to good mental health for our entire 8 week stay. Will we be able to find an affordable rental car while there? And of course the worries about how Nico will respond to the treatment are also real. How will Nico respond to being sedated every weekday for 28 days? Not to mention any short term side effects of the radiation- skin irritation/burn, mouth sores, who knows what else! I’ve had to step back, take a deep breathe and have faith that God is in the details. I keep coming back to this quote lately:
“In the darkest days, when appearances seem most forbidding, have faith in God. He is working out His will, doing all things well in behalf of His people. The strength of those who love and serve Him will be renewed day by day. He is able and willing to bestow upon His servants all the help they need. He will give them the wisdom which their varied necessities demand.” Ministry of Healing pg. 482.
The blessings associated with radiation in Arizona is that we lived there for almost 9 years before we moved to British Columbia last year. It is very familiar to us and we have friends and some family there. It will be a vacation in some ways because we will get to enjoy lots of sunshine and beautiful sunsets which we’ve been missing since moving to BC. And hopefully see some of our friends!!!
Please keep us in prayer as all the details and finances come together for our time in Arizona. Also, Nico has a very busy week of scans (MRI this Tuesday and PET scan on Wednesday) and 5 days of chemo starting on Thursday. Poor kid is becoming increasingly weary of the hospital and it’s not going to get easier with radiation just a few weeks away. Please pray for us all to have renewed strength and courage in the weeks to come. Much love to all who are on this journey with us! ❤