Dear Madeline,
It's been a few days since I've been able to writing to you. Maybe that's been a blessing; it has been a challenge for us to accept some of the developments that the last few days have brought. It is very easy to develop a sort of tunnel vision right now, but I know that these are but bumps in the long road we're travelling.
On Monday, Mom and I found out that your cancer had been re-staged and that you would need some radiation treatment on top of the chemotherapy. At least we also learned that the lead for your had been officially given over to the oncology team from the surgical team.
On Tuesday, we met with the radiation oncology staff to discuss what treatment would entail and learning that you would need any number of treatments greater than 1 left us feeling a little deflated. Later on that day, we also sat down with oncology to talk about the treatment plan (28 weeks of chemotherapy), the chemotherapy drugs, research and more. We also talked about potential side effects. I don't think I want to dwell on those. Mom and I can talk with you about them one day when you're older. These days, it's enough for us to know that all of this treatment is designed to save your life. Tuesday was a heady day, almost surreal, and I don't ever wish to experience a repeat if that day.
Showing posts with label waiting. Show all posts
Showing posts with label waiting. Show all posts
Friday, March 11, 2011
Tuesday, March 1, 2011
more waiting
Dear Madeline,
We've made a few adjustments to our expectations since you arrived in the PICU. Or, more plainly, we've done a lot of waiting. It seems that not long after the PICU nurses told us yesterday afternoon that you'd be on you way up back to the oncology wing shortly, they started having difficulty managing your pain. In their wisdom, they decided that they enjoyed your company too much to let you go back upstairs. The only problem is that they forgot to tell Mom and Dad!
Mom and I waited with excitement and anticipation for you to arrive back in your room in oncology. And we waited some more. And then more. And more. Grandma and Granpa arrived hoping to see you. Aunt Beth came by after work to check in on you. No dice. We waited for hours with no news, and naturally our concern grew.
Down to the PICU we marched, looking for answer. When we learned that you were in such pain, we agreed that they should keep you until your condition improved. But we were so disappointed, not to mention worrried that your condition was starting to backslide. At least Grandma, Grandpa and Aunt Beth were all able to put on a moonsuit and spend time with you in the PICU.
We woke up early to catch your overnight PICU nurse and your incoming dayshift nurse with hopes that you had a better night and that there were few concerns about moving you back today. Indeed you did have much better night! You slept for 6 hours consecutively... unheard of in these quarters. They were quite optimistic that you'd be shipped out almost as soon as the pediatricians completed their rounds and PICU could complete the paperwork to move you back to oncology. After a bummer of a night and dreary start to the day, our spirits were greatly lifed. They brought you up at a little before 11. And it was good.
Yet more waiting on the pathology report and official diagnosis, and on being able to hold you in our arms again, but neither should be too far into the future.
We love you, Maddie!
Love,
Daddy
Sunday, February 27, 2011
... and now we wait.
Dear Madeline,
After hours of waiting for a bed to open up in the pediatric intensive care unit (PICU) at Johns Hopkins Hospital, the wheels were finally set in motion for your surgery today. We wheeled you down one floor from the pediatric oncology unit to the operating room at about 3 PM. Your mother and I escorted you into the surgical prep area, dressed in scrubs, discussed the game plan with the anesthesiology team, and then kissed you one last time before the anesthesia went to work.
Mom and I met up with family in the general OR waiting room, and then promptly got up to go for a walk to clear our heads and talk to each other about what we were thinking. We ended up in the chapel saying some major prayers as tears streamed down our faces before collecting ourselves and rejoining our support system.
We got word at about 4:30 that surgery was finally underway after 90 minutes of prep work to implant a central line, breathing tube, and IV sites. And now we wait some more. We were advised that the surgery itself would take at least 3 hours, perhaps as many as 5-6 hours. We know you're in great hands, but you are your father's daughter, and I'm not very patient when it comes to things like this. I'm anxious to be by your side as your recover in the PICU.
Love,
Daddy
After hours of waiting for a bed to open up in the pediatric intensive care unit (PICU) at Johns Hopkins Hospital, the wheels were finally set in motion for your surgery today. We wheeled you down one floor from the pediatric oncology unit to the operating room at about 3 PM. Your mother and I escorted you into the surgical prep area, dressed in scrubs, discussed the game plan with the anesthesiology team, and then kissed you one last time before the anesthesia went to work.
Mom and I met up with family in the general OR waiting room, and then promptly got up to go for a walk to clear our heads and talk to each other about what we were thinking. We ended up in the chapel saying some major prayers as tears streamed down our faces before collecting ourselves and rejoining our support system.
We got word at about 4:30 that surgery was finally underway after 90 minutes of prep work to implant a central line, breathing tube, and IV sites. And now we wait some more. We were advised that the surgery itself would take at least 3 hours, perhaps as many as 5-6 hours. We know you're in great hands, but you are your father's daughter, and I'm not very patient when it comes to things like this. I'm anxious to be by your side as your recover in the PICU.
Love,
Daddy
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