Therapy

Today we took Finn to his first therapy session.  He has been exhibiting violent behavior such as bitting and hitting.  He has also been "peeing" out of his pull up at night every night since the news of Elan having cancer.  He was to the point of almost getting rid of them before the cancer.

So the therapist was great - really didn't talk with him much but gave us great ideas.  Finn basically is a great kid in her opinion but acting out as we had gathered :).  Specifically giving a reward for good behavior to mold the behavior we want him to do.  When he is starting to exhibit biting etc we should say positive things to someone else such as Elan.  Of course we have heard and tried in past similar things but she explained he is so bad because of being scared and frightened not because he wants to be bad.  Been doing it for 3 hrs and a full turn around!

We chatted for over an hour with Jessica Bell today too.  Nice to have the time to ask questions again even if on the phone - so much easier than bringing Elan in.  She was pretty frank in that since he didn't have a full resection the likelihood is low.  She also said low that Indiana will take Elan based on his resection. Good to have the information,  she did say that Dr. Heafner did better than we could have expected because it was pretty tangled up as she put it.  Not an easy resection by any means.  All information we had talked about but needed to go over again for our sakes.  Hard but good conversation... she is so good at what she does!  She did say MGH is so focused on a cure regardless of the child's outcome.  She said the kids they have sent basically came home for end of life care where MGH would say they were successful - all we already knew.

She provided me therapy today too.  I talked about how I went on Facebook and friended people who have kids a few years out with no sign of disease and how one said that the only side effect was basically tiredness.  She said if only that was the case!  It is the worst level of chemo they administer and kids are in an out of the hospital for at least a year.  She went on to talk about the other cases the hospital has seen and the outcome and quality of life they have/had.  Really helped us confirm we are making the best choices for our family.

All is riding on the next MRI tomorrow - but pretty low odds of getting into Indiana.  She said no studies on Proton Beam curing the cancer but will buy us time.  I am still not convinced it wouldn't get rid of the cancer all together.  We really really pray Indiana will take him.  Supply and demand.  Demand high and supply low.  Stinks!

MGH

So yesterday we received news from Jessica Bell, our oncologist that MGH most likely won't take Elan unless he did protocol.  We knew this would be the most likely answer... main reason is that they are doing a clinical trial and with Dana Farber (part of MGH) and Elan would fit the profile if he did do the high dose.  Dr. Yock at MGH did talk with Jessica yesterday and we are yet to find out how that final conversation went.  Poor Jessica had a head cold and lost her voice so may have taken yesterday off as she said she may.  Another Dr. may have done the final conversation but we still have to wait for his MRI on Tues to know the final final from MGH.

We are OK with it as still could go to other places and they are more eager anyway.  For some reason we both had a feeling MGH wouldn't work out but feel that Indiana will... not that it means anything but the feeling we get from the conversations with drs ect.

Yesterday was also a rollercoster for his eye.  We went to the Optimologist for his scratch who had given me cruddy news last Friday at the follow-up that something more serious was going on.  Last week I took Finn too since it was the only appointment that i thought would be low stress - of course it was about as stressful as the first ER visit!  Poor Finn saw me crying etc.  I wasn't able to ask any questions since he was there so for a week super stressed.

 So needless to say Erik came too.  We get there - see him then take Elan to do a photo (awful - guy doing it hadn't done anyone under 3 before).  Then the Retina specialist comes in and says "oh, no big deal, just like a freckle and not cancer related".  So for a week walking around having been told most likely cancer related and had spread to his eyes and then the other guy comes in and in 5 seconds says no big deal and just hereditarily normal.  Thanks!

Erik talked with our pediatrician last night - Dr. Lye - the best btw.  He called us Friday at 6 pm to give us his recommendations for Finn for counseling.  So Erik told him briefly what happened and said "yeah the med school joke is if bad bedside manner go into Optimology".  Really sad how the doctor knowingly put us through it.  Dr. Lye said he had the same thing - of course he would!  he was also born on Sept. 7th :).

So yesterday Elan got his MicKey!!!!  He did great!  It basically is just a little zip drive size thing and NO cord!!!!  So great!  We just attach the cord to feed him but detaches the rest of the time.  He acted so normal after his nap - which he needed to get the drugs out of him.

We did a normal thing last night - measured the boys.  So fun!  You can see how well Elan has been standing in the photos.  He grew an entire inch since March 5th!  He also went from 9 Kg to 9.1 since being out of the hospital.

He really is a normal boy now and acts like it!  Today he basically wanted to walk and kept on reaching for me to just barely help.  So great!  Jennifer (PT) was thrilled as it had been 2 weeks since she had seen him since she had pink eye last week.  He was stepping up on his stool etc.  such progress!

Memorial

Forgot to post about the Memorial. Erik, Finn, Elan a I stayed in Hilton Head a few more days just the 4 of us. We went to the Memorial in Hilton Head. It was actually in a country club. Of course since it didn't look like a typical hall Finn didn't act like he was a meeting. We got there late - had a hard time figuring out where it was exactly located. So sat in the back - oh well. The brothers were adorable who were attendants. Some even were wearing saddle shoes! I sooo have to get Erik a bow tie!

Here is the photo - such uncooperative boys!

Standing On His Own!!!

Yesterday late afternoon the boys and I were in the back driveway. Guess what??? Elan stood up all by himself! He was sitting then did his squat and stood up! Sooo proud of him!

Other exciting news -- we were told that Mass General will at least look over our stuff at the review board! This is one step closer to Proton Beam Therapy. I talked with our Kid's Path nurse Stephanie today and she was so kind. She was really positive about how we are going our own way and taking control of Elan's health. She said so many just go with what the doctors tell them. It is so true that the medical community has one way and just says "here is the treatment - any questions?". We really feel so blessed to have our faith. If we didn't who knows where Elan would be. SO many issues come out from the high dose chemo. It really is so experimental at the level he needs, quite scary. Hopefully a low dose option with PBT will do the trick!

Typical Sunday

So Elan woke up around 6, i illegally nursed him and then he slept until 9:30. Made me realize he did this before we found out he had AT/RT. Now nervous that it has grown back as big again. We still haven't heard about Proton. Want to be doing something proactive - esp. since it has been proved to do something!

We went to special talk today - Adam did a great job. Everyone in our congregation kind and sweet. Tough to see some as difficult for them to know what to say. I just wish they would just come up and say "hi" just rather awkward. One sister just looks at me with pity. I don't need pity, just love!

I still have this gut feeling that things will be OK. I know it won't last, just nice to have. We had so many awful things out of our control happen for 3 1/2 weeks at the hospital. Overdrive adrenaline. I seriously felt it would never end - nurses in and out every 2 to 4 hours for 3 1/2 weeks was really life altering. 

Hilton Head

This post is a true stream of consiousness about the past week or so - please forgive!

So we are in the car driving home from a week at Hilton Head. It really as the perfect time. Elan did so well! He had so much fun in the waves and sand. We rode bikes daily and he of course was all smiles. Mom and Dad plus Seth and Jenny, Delia and Caleb all came. We rented an awesome house 1 block from the beach. It was in the Sea Pines area so quite and family oriented.

Finn had "superman" ice cream at Salty Dog Cafe in South Beach He said he wanted "batman" which they made instead :). We went a few nights for drinks there with Seth and Jenny after kids asleep - nice. Just hung out and didn't leave Sea Pines. We will do it again this summer for sure just the 4 of us.

One day we ran into a special ed teacher and 2 girls she watch who are twins. The one has Autism and Cystic Fibrosis so special needs. The teacher named Amanda said she actually knew someone with an AT/RT baby several years ago. How amazing is that?

We also had a crazy thing happen. Erik and I went to Publix when the boys were sleeping one of the first days and ran into the PA who was in the ER the night we took Elan in. It was an amazing experience. Her mother was with her who had breast cancer and is a 6 year survivor. The mother said she had been praying for us since she heard about us after her daughter's shift. The PA said she had been praying and thinking about us a lot. The ER had been following Elan and all are impressed with how we kept our integrity about not wanting to transfuse blood for Elan. She was quite happy that we had a good feeling and experience. She was actually surprised that we found everyone to bee accommodating.

It was really nice to have so many strangers around Elan again. He is back to himself in so many ways and doesn't look sickly anymore. Many said "what a cute baby" in passing - not to me but to each other. SO great to hear that again. There was one little boy at Salty Dog Cafe that pointed at Elan to his mother but didn't really bother me. He has plump legs and makes happy noises. His newest thing is humming the Thomas song. So adorable! His vocalization is getting louder too! He is waking up happy too!

His wet diapers are so strong from the vitamins - so funny! Speaking of bodily funtions... Finn had BLUE poop from the food coloring in the ice cream at Salty Dog the day before! Good thing our kids don't eat stuff like that regularly!  I know the AT/RT has nothing to do with how we feed our kids but it does upset me that we have been so careful about their environment and food that we end up getting the short straw with the cancer where so many parents feed their kids a diet of McDonalds regularly! Sucks!

I did look most nights online about AT/RT. Found several long term survivors - all had some form of chemo and radiation. I am getting a bit of hope from it. The fact Elan had a no additional growth means we are doing at least something right! We still haven't heard about the Proton Beam. Erik's phone got wet a few days back so he hasn't had cell access. I was able to get it to work for a minute but then it went off again - hopeful we can get it to work though!

Other good things about the trip:

- seeing dolphins all the time. Literally 10 ft from shore. Super amazing moment!
- walking up the lighthouse. Just a nice time with all of us happy. We took Delia up too.
- seeing Finn and Delia have relationship - boy was it a love hate thing. Finn was so mean to her! Really trying to "get her goat".
- taking family pictures. Just nice to have the whole family looking nice. I really like having all look nice! Makes me feel more in control.

Speaking of control - boy to I feel FAT! I have had alcohol every night since we have been out of the hospital. This week tons of BEER - so bad! Tons of carbs etc. We are starting on a full on veganish diet starting Sunday. Tonight we are headed to Red Hot CHili Peppers... we bought tickets before all of this. Having Kenya watch the boys since mom and dad headed to DBQ to pack today. They will be gone a week to get their stuff.

Boy do i have a ton of thank you cards to write! I feel that at this point just the phot0 card and a line is what i can do. Sorry it isn't more! At the beginning it was too emotionally draining and now just overwhelmed! I feel guilt about not writing them. Just whenever we have the time I would rather be researching things for Elan!

Normal Day

Today quite normal. Took Elan to Dr. Fogel, the chiropractor/ acupuncturist who sells Standard Process Vitamins. She gave us 13 different new vitamins and looked over our current ones to let us know which ones are synthetic vs natural. Quite shocking!

Elan went down to nap by asking. He is making up for the last several nights of waking up with a wet diaper. Such a sweet boy today! Nice to just spend time the two of us.

Finn asked for the lobster dip from Costco we bought for the beach. He calls is claw steer dip. Too adorable. Right now Finn is fighting about bedtime... i hate the time change! he went to sleep so well before all of this bright lights!

Parents moved in on Sunday. Stuff in garage and waiting on hearing on Proton Beam Therapy. I spent some time while on a conference call on Facebook - bad idea... reading a message from a mother I reached out to a while back that has a girl with no signs of disease  and asked if any alternatives. She basically texted I must do the high dosed chemo and only way for my child to survive and her daughter didn't have any issues but "tired"... i find that hard to believe. I am having my oncologist check into her protocol. She also had a stint in her head from having the chemo put through the barrier... interesting.