I feel a bit like Maizy Bird who flew away south while poor Horton the Elephant sat on her egg. But there is one difference, I never stopped thinking of the egg I left behind and wished I could be there to care for him. My self-assigned job for the week was to be a fun mom to my other four boys. Hopefully the mission was accomplished.
William is doing well. More hair continues to fall out and one spot is almost bald. It is hard for me to think I left a boy with a full head of hair and now he is almost completely bald. He no longer looks like one of the healthier kids on the hospital floor. He is just like them. It's a sobering image as I reflect on what has happened in a month. Yes, it's been 4 weeks or 30 days. But who's counting?
At the beach, the boys spent all their time in the sand and water. Our house was on the beach front and our front patio spilled onto the sand. Our lucky neighbors got to wake up to little boys already digging holes!
I slowly filled my bucket, but the reality of my life still feels a bit like a dream. The four boys headed to Utah after the reunion and are staying with my parents for 3 weeks and then it's off to Idaho and then San Diego with their Murdoock grandparents for the last 2 weeks of July. It's hard for us to not have our other children around, but we knew this would eventually be a reality at some point. While hard, it's helpful. During their absence, William will be able to complete 2 rounds of chemotherapy, have his stem cells harvested, attend oodles of doctor's appointments, have several possible unscheduled hospital stays (hopefully not), and be on the upswing from his most recent chemo dose before his brothers return just in time for school to start. But I must add, this is all subject to change and may be delayed at any moment. (I'm trying to embrace my inability to plan and control!)
Ryan and I are often asked if we stay with William all the time at the hospital and if it's required. The answer is yes, we have someone with him all the time and I'm not sure if it's required, but it's a no-brainer. We are William's advocates and we know him best. Our friend, Chrissy, who is a hospital expert with her many stays with her daughter, reminded us that we will know more than the nurses at times and it's okay to tell them NO. We've had fabulous nurses, but I have had to say no to one roommate situation. It was quickly remedied. Also, William is not supervised by hospital staff constantly. It he needs something or his I.V. is beeping, we must call the nurses. He isn't quite old enough to sometimes know if he needs something, i.e., pain meds. He does know how to call the nurse, but his assessment of needing the nurse is calling them to help him advance to the next level on a video game. Ahh, how we all have varying needs and wants!
Ryan and William made the trip to UCSF Children's Hospital yesterday (Friday) and got the run down for what will be happening with the bone marrow harvest in about 2 weeks. That will have to be a post on it's own later tonight. Right now I'm going to focus on unpacking, laundry, and errands before we head back to the hospital on Monday morning.
Thank you to my parents, brother, sisters, their spouses, aunts, uncles, cousins, nieces, and nephews for the outpouring of love and support. I love you all dearly and am so blessed to be part of your family!
William is happy and starting to eat. Although it's no much, it's a start just the same. The doctors meant what they said and they said what the meant. We're trying to be faithful, 100 percent!
Oh Julie...You are so much more than Maizy Bird. Thank you for your blogs. They have given purpose to our every prayer . . .100 percent!
ReplyDeleteit was so wonderful to be with you julie. we love you and continue to pray for all of you in every prayer!!!
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I echo Sally's thought completely. You are an amazing mama bird and have fun, little birds as proof! My love and prayers are with you and Ry, Julie! Will couldn't have a better nurse and caregiver than you! We are all blessed with gifts that don't seem like gifts always (your need to plan and well, my emotional transparency). Curse and a blessing, at least in my case. And in yours, you are a pure blessing to Will! My best and love to you. ~Rach
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