I’ll take it - my new tag line by Erin Gourley
I’ll Take It-My New Tag Line
I went in Sunday for my 3 days with Lucas. That’s how it’s going to be now, 3 days on with me and Brian takes over the next 3 days. Driving in Sunday, I remembered growing up I used to watch the St. Judes telethons in High School when I couldn’t sleep at night and cry watching the sweet children battling cancer. I walked in to Lucas’s room Sunday and had to take a breath and thought ‘he’s so little and linked up to so many IV’s he’s one of those children now’. I kept it together because that’s what you have to do... be strong for him. It might be hard for us living this new world, but he’s the one who’s on so many hard core medications and dealing with chemo and the pain. Yet, he still does not complain-ever.
Sunday night was a rough one -night 16. He got off chemo so we don’t want fevers to present themselves which could indicate an infection. Sunday at 1am he had a 102.7 fever. Monday am the doctors said that they needed to add Vanco to the antibiotic IV list. I knew what this meant because when Jack was in the hospital with staph they used every antibiotic known to man except Vanco. That was the big gun the last resort. We didn’t have to use it with Jack, but with Lucas there was no choice. He is at zero in terms of immunity and he can’t battle any infection without the meds. So as of Monday, he was on Vanco for the next 48 hours while we waited to see if the blood cultures grew any bacteria to suggest a staph infection. He’s also on Zosya, Bactrim and Acyclovir for bacterial infection and Ampho for potential fungal infection. They did another X-ray on his lungs and there still is ‘cloudiness’ which could suggest pre pneumonia a potential infection brewing. The fevers were still there Monday am but Tuesday am they went down and he had vomiting episodes Tuesday am and in the middle of the night. He was still a trooper. I was praying like a mad women saying prayers over him and spraying Auntie Sam’s full moon tincture over him.
The Doctors have been absolutely amazing and I felt such relief knowing they were there at night to help. The entire team is top notch. Dr. Nunez has been treating children’s leukemia for 36 years and showed me the data, Lucas’s trends and seemed to have a handle on everything. I thank God everyday he’s in the best hands possible.
Yesterday morning, he didn’t have a fever and decided to take him off Vanco. My daily line when I get ANY good news is ‘I’ll take it’. The Doctors came in and said we need his Neutrophils to start going up. The Neutrophils are the immune cells that start growing back which sync up to the white blood cells. Today’s day 19 and really praying this starts to happen. They told me he looks good and again I almost hugged them and said ‘I’ll take it!!’. He had a HBG and platelet transfusion (this is no big deal to Lucas anymore he’s had several and will continue to get more) to get his numbers up and handled that like a champ.
Lucas is fearless and I’m in awe of him. I’ve never met a stronger person in my life. We told him about finding a place until the end of the year in Houston and having his brother and sister moved down and his eyes lite up. His greatest joy is seeing Jack on FaceTime and feeling close to him. Jack being here at least in the same town I know in my heart will give him more strength. He understands that he’s going to be in the hospital for a while and his response was ‘well how will Santa and Cliffy find me’. There will be a few days he might get to come ‘home’ down the road which will need to be in Houston near the hospital. I can’t wait for those few days.
My prayers for Lucas:
- That these fevers stay away and that he does not have any lingering or new infections.
- I pray so hard that his Neutrophils start to come in quickly and keep going up to build his healthy immune cells and that his white blood cell counts come up very soon.
- That at the end of the month he will be ‘MRD negative’ meaning the chemo worked
- Hoping he doesn’t need a BMT. We find out soon. It’s 50-50 but praying he doesn’t.
- The big one which I always end with is that he beats cancer for good and all the tumor cells are forever ridden from his blood and bones.
Thanks to all of you for helping every day. You have moved mountains helping with the kids, bring food, helping us sort out this transition to Houston. Thanks team Aunties in Boston for organizing up there to help Lucas and our Austin team wow. I have no words. Thanks to all of my sister friends around the country for being our rock. Thanks Darcie and Hannah for watching Jack and Dylan this week. And thank you to the Fairbanks who are letting us use their back house in Houston and they don’t even know us. I’m amazed by the kindness of you all and your prayers I do swear they are working for Lucas!
