Tuesday, March 24, 2009

Happy to be HOME!

We are HOME!
And so happy to be here. This morning, Pablo found himself unhooked around 6:30a and came over to my sleeping spot, crawled in and snuggled up for another three hours of sleeping. We both woke when Meghan, our nurse this morning, came in with his last dose of IV Zofran. Meghan has been our nurse a few times - she's awesome - particularly good at the de-accessing of Pablo's line from his port. Last night we had sweet Danica. We do love all of our nurses, but over the past year - Danica has become so close to us. We hung out in the hall last night and recapped our first night there way back in May 08. Danica was our nurse that night, but because we were a "new diagnosis" she was only coming in every once in a while to check vitals. She remembers that P and I snuggled up in the bed, that there was a lot of crying and shell shocked looks on our faces and that Jeff stayed up all night trying to find out something about this thing we'd never heard of before: Wilms' Tumor.

I guess they bring in a chemo cake and sing a little song on the last day, but I asked Danica last night not to do that... I just didn't want to make a big deal out of this - we did the very low key cupcake celebration, which was really just a way for us to show our appreciation to the remarkable, loving nurses of 4W and to mark the night. A big thing today would have felt a bit weird - especially since we anticipate being back there next week with fever and neutropenia. So, instead of the cake and the song - we had heartfelt hugs and tears. It was really something. I love that staff!

Our friend, Adam, donated platelets this morning and came up to see us. He ended up staying until we were discharged to help us with all of our belongings. It was sweet to have him there. Jeff had swung by earlier on his way to a meeting - getting to give P a big hug for his big discharge today. We rolled out of there and decided that The Mustard Seed was the perfect place for a celebratory late breakfast. Pablo ordered a ton of food, but once it got there, he barely nibbled on it. He seemed a little bit tired and anxious to get home. Knowing that the weeks of house arrest are upon us, I offered to wear a mask with P and take him to the train at Griffith Park. He declined and said, "Maybe later with Polly." Once we got home, he decided that this is exactly where he wants to be and decided to pass on the train ride altogether.

It's been quite a road. A road that we are nowhere near the end of... just past a certain mile marker... the end of chemo. This is huge and fantastic and feels so amazing and scary and a bunch of other things, but JOY and HOPE fill our hearts. Now, Pablo's counts bottom out earlier and take longer to recover than they have with any of the past treatments. He is at a high risk for infection and we have to keep him in and everything around him as clean and germ free as possible. We do not want another infection!

Continued thoughts prayers and meditations for Pablo and all of our CHLA angels and warriors, please.

Jo Ann


Anonymous said...

Most definitely! All the thoughts, prayers, meditations - all of it, all the time! I'm happy Pablo's home and I'm wishing him a safe passage through this next week or so, that he gets no infections and that he comes through this feeling better than ever!

The Killer (That's Ms. Killer to you) said...

Welcome home, Pablo. My thoughts and prayers are with you. Always.

Anonymous said...

Congrats on the final chemo! This is a great milestone and I am rejoicing w/ you! We will continue to keep Pablo in our prayers for good health and clear scans. I have to agree... the friends (staff) at CHLA are amazing... they make miracles happen!

Travis (Corey's Dad)

MKPatrick said...

Welcome home Pablo. Over a huge hurdle and on your way toperfect health.

Unknown said...

Congratulations on reaching this milestone. Prayers and love always...

Anonymous said...

so much love and many prayers! welcome home P!!

Mary green said...

Well wishes and lots of love being sent your way from all your family back here in Milwaukee.

grandpa & kathie said...

hi pablo i am sending you a gift in the mail next week. our prayers are with you. call me when you are up to it.dont forget to root for the milwaukee brewers.lo ve and prayers always grandpa kathiejj

Dawn: said...

Sending you all the love and joy and gratitude my heart can hold for this milestone in Pablo's recovery. I love you.

AnneNonimous said...

Don't ask me how I stumbled upon this site, suffice it to say that I was moved here. I am looking without permission, so I feel a bit of an intruder to comment. But I see your son and there is something I must say: You will not lose him. The bright of life is more present in him than in many healthy children. I see a bump in the road, but his road is very long and it is a comparatively small bump. I mention this so that when it comes, you don't look back at the arduous road that has brought you to this point; don't look back and bleed for fear of retracing your steps. That part of the road is over. In time you will feel what you already anticipate: that this experience has caused you all to savor the smallest moments, and all of your lives will be enriched by this heightened awareness of those fleeting moments. But this struggle has given a gift to others as well. By Pablo's example, other children have learned. By being in his presence and seeing him in their same situation, yet full of life and able to enjoy what comes to him, these children saw a new way to live through their own pain. Of this, there is no question. He made a difference in their lives and though they may not all survive, what short time they had was made better by his presence there. So if you ever ask yourself why him, please consider that sometimes the universe must select and use people as tools in the greater scheme. Not only was your son able to share his strength with others, but you - as parents and as individuals - have shared your strength with whomever needs to find it because they will find it here on this wonderful record of the highs and the lows. Please keep this blog up indefinitely, someday it may serve as a lifesaving and intimate example of the experiences, thoughts, feelings and happenings that some parent finds in their most hopeless hour. They may stumble upon it as unintentionally as I, and like I, be moved here.