Friday, June 19, 2015

Belated update - awesome rapho

Today Marks treatment number 17 out of 30.  It's pretty surreal to think that I have allowed my 6 year old boy to be put under general anesthesia willingly 5 days a week and driven hours to do so  - SO many times.

1 week ago I wanted nothing less but to hide under the covers and cry.  I was feeling so sorry for myself, for my son, for my husband who I take it all out on and especially for my other 2 children who feel neglected by me and literally claw at me for hours upon our return making me lose my patience when they need my affection.  It's a 24 hour a day guilt trip.  I want to do better.

This week though, there was a big shift.  My phone beeped on my ride out to the hospital on tuesday at 7am from a wonderful friend congratulating us for making it to half way mark.  When I read the text I didn't believe it, but she was so close to right (the halfway mark would of been that day if not for some technical issues which set us back a day).  My first response was a crotchety "thanks but I wish it was today".  Later that night when I took a good look at my calendar and discovered she was in fact right, the tears flooded.  Guilt, love, gratitude.  My friend is counting down the days for us.  It was a amazing feeling to suddenly see an end to this, and more importantly have it brought to my attention by someone who loves us.  So today on our 17th day these next 13 treatments don't feel nearly as daunting knowing that we've already completed more than not.

Raphael is starting to have some minimal side effects.  His eye looks swollen and sun burned and thats really the worst of it.  We were expecting possible loss of appetite but my boy has gained 2 pounds in the last 7 days.  He sleeps the car ride home and after that, nothing slows down.  He's amazing.

Me... I go from being elated and grateful for all I have to sad and pissed within minutes.  It must be hard to be my friend so if any of my friends are reading, I'm sorry if I've hurt your feelings.

Mostly I feel self conscious.  I'm unorganized in my normal life and throwing a 5 time a week 8am arrival 2 hours away which requires a 5:30am to 6:00am wakeup just makes me a total scatter brain and I hate it.

Today was Raphael and Gus's school picnic.  The plan was that Ron would give me a break from driving to the hospital to take raph so I could attend the picnic with Gus's class and Gus would feel special and not neglected.  I woke ron and raph up, sent them out, got charlie and gus dressed and fed, prepared lunch and headed to the bus with enough time to spare to get charlie to day care and chaperone Gus all the way to school and his picnic.  Well, plan was going well until I discovered we got on the wrong bus and with no other options we had to walk 18 blocks to charlie's day care with no stroller.  She's 2..  We made it there ok though I did have to carry her for 8 of those blocks only to discover that it was teacher development day and daycare was close.  "you should read your mail" I was told. yeah, thanks...  So with no diapers or snacks prepared, I had to bring charlie with me to Gus's school.  She hates crowds (like her mama) and cried her face off until I was forced to leave the picnic to put her in a swing for a hour to calm her.  Gus cried shouting "no fair mommy, you promised you'd come"  guilt followed.  Finally Ron and Raph showed up and I swapped Charlie for Raph and we joined the picnic.  It felt strange.  It's strange being in this situation - vanished from my routine than returned with my son whom everyone is hugging and has wires and bandages covering his chest..  I'm not sure if I created weirdness or if it existed but I felt awkward and self conscious and latched onto my kids in a way that probably made me appear even more awkward.

That all aside, the end is nearing and though I'm terrified of what our next mri shows, I'm trying my best to live day by day and enjoy all I've got which is tremendous.

Lastly because of my lack of organization skills, I can't thank all of my friends enough.  We have literally come home to home cooked meals daily and though we are in a haze and stretched to thin to thank everyone properly, we are grateful.  If it weren't for you guys my kids would have eaten boxed mac n cheese for 30 days (if they were lucky).  It's true.  I've only made it grocery shopping 1 time since radiation started.

I will continue to update as I can and am totally open to questions.  Don't feel weird asking.  I'd want to know and our goal thru this blog and making this public is to spread awareness to this disease.  It effects 1 in 4,000 births (Raphael's type only 1 in 40,000) but still it is very prevalent and no one has heard of it including myself 2 years ago.  I'm on a mission to change that with your help.

Lastly,  please consider making a donation to the children's tumor foundation to speed up research so raphael and the thousands of other kids afflicted with brain and nerve tumors can get into clinical trials which are our only hope at the moment.  No amount to small and every penny appreciated tremendously though my thank you note might take a year, it will come.  Here is the link.


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