Estimated size at diagnosis (June): 16cm x 16cm x 13cm
Estimated after 2 rounds of chemo (July): 10cm x 13cm
Estimated after 5 rounds of chemo (Sept): 4cm x 5cm
William's immune system is recovering and his ANC is on the rise, but he needed blood and platelets yesterday so we spent a long day at the hospital and returned home around 9 PM. I had moments while sitting in the hospital room where I got frustrated that the transfusions were taking so long due to a few minor setbacks, but then realized, "We just received the best news since this journey started. I can handle a transfusion taking a few extra hours." It's hard sometimes to take the time and stop and just reflect on the blessings we receive and the good things in our lives. I am grateful that the tumor is responding well. I am grateful that although William's weight is a constant concern, he has tolerated his chemo cycles well. He hasn't been admitted to the PICU, had uncontrollable vomiting and nausea, developed infections in his Broviac, his brothers remain healthy....
It's hard literally living day by day sometimes and not knowing what tomorrow will bring. We still don't know anymore about when surgery will happen other than it will happen in the next week or two. The stress levels of Ryan and I hit the fan this afternoon--both for different reasons and from different stressors and we had to take a step back and realign our priorities.
William got the approval from the doctor to go camping tonight with our church. Ryan was planning on taking the other boys and William was just hoping his blood counts were good enough to go. (I was hoping they were still low so I could stay home with him!) Camping with 5 little boys is near the top of my list of what causes me stress. I do not enjoy it. I do not enjoy the preparation and clean up it involves. I should love it. My husband and sons love it. I do not. Put me in a nice room by the beach and that is where you'll find a happy camper. I think it mostly stems from a lack of cooperation and help that the ages of my children currently provide for such an undertaking. My sleep is still too sacred! I remain optimistic that I will find more joy in it one day. Just not today.
Because I was so stressed over camping and a few other things going on, I broke down in tears. Ryan is way overly stressed at work right now and hates trying to juggle it with our family. He does an amazing job and I love how hard he works and tries to find balance. I know, and the boys know, that we are his number one priority. He was on the verge of tears, but I beat him to it and we don't cry together. One cries and the other comforts and then we can switch. That way we keep one semi-rational person in the situation! Thankfully, in his rational state, he announced, "Let's skip the camping part and just drive up there for dinner and the campfire and then come home!" He promised to set up a tent in our backyard at some later date. He understood that we all needed to get out of the house and the boys were already looking forward to being in the mountains, but the tent and all the junk could be left at home. Brilliant! I'm embarrassed it was so obvious. My brain was so foggy that I announced "I'm moving to Australia."
We threw jackets and a bag of goldfish crackers in the car and William's mini-marshmellow shooter that his friends made for him at cub scout camp (he was anxious to use it). They had a glorious time and came home filthy and tired. I was planning on waking them and bathing them (see, still not rational), but Lisa talked some sense into me and said, "It's still camping. Let them go to bed dirty and you'll still have loads of laundry, but you'll get clean sheets out of it!" Her mother is my laundry fairy and picks it up every few days and returns it so beautifully folded and ironed! Yes, ironed! I gave up ironing unless absolutely necessary and I've been known to use my hair flat iron on my collar and front button placket and bottom edges. It works in a pinch and you can wear it while you do it!
I'm grateful for blessings, good news, smiling doctors, reality checks, cleaning fairies, friends and family and strangers who have touched our lives and had their prayers answered on our behalf. Thank you! Thank you!