A year ago and a lifetime away May 30, 2012

It’s hard to believe it has been a year since Kai was diagnosed.   In some ways I feel like this year flew by but at other times I can take myself back to that day like it was yesterday.

At this point it is hard to remember life before brain tumor and I now know it is  unrealistic to imagine a life after brain tumor.

July, 2011:

“The first chemo day was really hard on me.  Well the day itself went fine, he actually did great, but leading up to it was hard.  I guess this was the final step hat made it all real for me.  This is now our life for the next year and a half.  Chemotherapy is the best option we have to help him, which still seems so wrong. How can this be good for him? How can this be our life? How are we going to do this, week after week bring him in knowing it is going to make him sicker and sicker, hoping in the end it makes him better???

People tell me you get used to it and this all eventually just becomes routine, our new normal.  We have a long road ahead and I guess what they say is true, we just have to hope for the best and  take it one day at a time.”

We continue to live one day at a time, hoping for and working towards a better tomorrow.

We had another ‘stable’ MRI last week and Kai has continued  to tolerate the new protocol fairly well.  These little blessings, while not as grand as we hope, are the things I try to keep in the front of my mind.  TODAY Kai is doing OK.  

But with all the good we try to pick out of this situation day to day, it is a hard sell when you look back a year….

Kai standing with dadda

Kai takes a bite, and can sit up in bumbo chair

Kai holding on with TWO hands

Curious Kai- first day of chemo

first day out of the hospital after surgery/diagnosis

family pic before surgery

the last picture of Kai before shunt surgery

The truth is, in MANY ways Kai’s life continues to get harder each day.

I wish I could say a year later he is doing great, or even better than before, but in most ways he is not.

I am thankful that he is not in the pain he suffered with the first 8 months of his life.  I am thankful we at least now know what was going on.  I am thankful that we have so many wonderful people supporting and helping us.  I am thankful that we are doing all we can to help him, but it is so sad that all this help and love and support really still isn’t enough.

A year ago Kai could ‘stand’ with the help of his dad.  Kai would bite a pice of watermelon.  Kai could drink from a sippy cup.

He could sit in a high chair and not fall over.  He could hold his head up when on his belly and even roll over one way.  He could sit up on his own on the floor.

He would hold on when I carried him.  He would cry if he was hurt.  He could see.

It has been a long year.

EEG May 17, 2012

Having chemo every other week really feels like we have some time to live a little bit of a normal life.

…but since we still spent 4 days at children’s hospital in the past two weeks I don’t think our definition of normal life is very normal….

What makes the greatest difference is that Kai has not been as sick from this chemo!

No matter how many days we  spend at doctors appointments, which is totally NOT a normal amount, he is still smiling every day. This is a huge improvement from a few months ago!

Last week we spent 3 days in a row Boston attending appointments.  Kai had his regular, 6 week, ophthalmology appointment and his eyes seem to be stable.  We were pretty concerned that his vision was continuing to worsen, and it likely will eventually, but for now he tested exactly the same.  Hopefully this means the tumor is also staying stable, he has another MRI this week to find out.

He also had his first Electroencephalography (EEG), to check for seizure activity.  The test was similar to the sleep study we did over the summer, only a lot shorter.  They glue a bunch of electrodes to his head, try to get him to sleep for 20 minutes and monitor his brain waves.

He tolerated this test better than I expected (remember we ended up in the ER during the first sleep study!).

We were instructed to come to the test  sleep deprived ( oh, you mean like every other day!) so he will be able to fall asleep for the test.  Since we live an hour away and he ALWAYS sleeps in the car, I decided to get there a  few hours early (because I love nothing more than spending my entire day CHB)  and I walked him around outside trying to keep him awake.  Thankfully it actually worked!  Once they put the electrodes on, he snuggled up to mom, stuck his left hand down my shirt (as always) and fell asleep!  He was not happy when they woke him up 20 mins. later and he was really not happy when they then stuck him in front of a flashing strobe light!  He really reacted to those lights, crying and squirming all around trying to get away from it.  Of course I had to hold him there and force him to look at the lights, which felt like a true torture tactic.  Thankfully that was the end of the test and we were almost out of there, just as soon as they removed the electrodes…which ended up being the worst part of all.

EEG

(To learn more about what it is like to have an EEG check out this article:  http://www.wonderbaby.org/articles/eeg)

I have not seen the written report yet but one of his doctors told me the test came back negative for seizure activity.  They are still concerned and are now talking about doing a two day at home EEG test sometime in the next few months, which is exactly what I predicted would happen…. so off we go to the next appointment.

Sleepy Chemo Baby

Wednesday he had his second dose of the new chemo and I am very happy to report that it went much better than the first time.  After the reaction he had the first week his team decided to try a different does of pre-meds (anti-nausea: zofran, raglan, and benadryl) which was much better for him.  He did vomit one time before leaving but that was it.  We made it home without incident and he recovered in a few short days.

Now we are enjoying another week ‘off’, except for the three days of at home therapy and the one appointment in Boston on wednesday, ha!

Yay I got to see Addie!

And we got a visit with our other best friend at the clinic Declan!!!

Early Intervention conference May 10, 2012

Last week I had the opportunity to attend the Massachusetts Early Intervention Consortium.
http://www.maeic.net/index.html

I was invited by our local EI and Regional Consultation Program, who funded the two day conference, meals and hotel stay.
It was another great learning experience, the best of which was spending a few days with some amazing super moms (and dads!)
There we’re probably 40 families in attendance, some of whom also presented at different workshops. The consortium provided a special family dinner, family hospitality room, and leadership project meeting, allowing the parents to get to know each other….and of course some of us parents also found our way to the bar at the end of the night!
It was amazing to be able to talk so freely and concisely, without having to explain every little thing. We compared notes on different doctor, tests, and treatments. We talked about diagnosis, or lack there of for some. We talked about the effects on siblings and the fears and hopes of having another child after having a special needs baby. We talked about traveling, getting a night off, keeping your extended family involved…we talked for hours about all the things you just can’t say (or don’t want to say) to the rest of the world. The things you sometimes feel guilty for thinking in your head. The truths that bot everyone wants to hear. But most of all we talked about how precious and cute and full of potential our little wonders are. How lucky we are to have found each other and how excited we are to get all the kids together!
It was another great experience in this crazy world of being a special needs mom and I am so thankful to have made some new friends. all o the moms I hung out with are also involved with Perkins, so I’m sure we will be seeing each other again.
Kai spent a few days visiting Gigi and her friends. I’m glad she has her own little village to come by and hang out and help out when she has Kai for a day. He’s a lot for any one person to keep up with, and he can never get enough cuddles and snuggles!

We had a nice mothers day visiting with my mom in western mass on Sunday. It was a beautiful day put and we had a small relaxing gathering, which was just perfect for us.
There is a picture on my moms fridge from last mothers day, my first mothers day, of my brother holding Kai. The pictures from that day are the last ones I have before Kai was diagnosed. It was a hard day for me last year. I was completely exhausted and certain by this time that something was wrong, but we still laughed and loved and shared the morning with some of my favorite moms. I will always love and cherish those pictures and memories. Life will never be like that again.
It is hard to believe A year has pasted since that day. So much has happened in such a short amount of time. It really is true, once you have a baby the years just start flying by!
They keep you pretty busy!
Keeping up with Kai this week:
Monday- opt-homology at children’s
Tuesday-complex care at children’s then opthomology at Perkins
Wednesday- back to chemo for round 2

Feeling better May 4, 2012

Kai still slept a lot today but e was defiantly feeling better! He barely needed any meds and ate and drank pretty well. He even had enough energy to try to tackle the spoon himself!

Thank you for all your thoughts and messages, we really appreciate it xoxo

Day one, again May 3, 2012

Well I’v said it before and I’m sure I’ll say it again, I hate chemo!
I hate that I know so much about it, I hate that so many other people have to knows so much about it. I hate having to pick which one my baby should get and I really hate watching him get sick right before my eyes as it drips into his veins. I hate that this is the best shot we have to help him. I hate everything about it.

Kai was bright and smily and interactive when we got to the clinic. Everyone was happy to see him doing so well and by the time we left he was a different baby.

I feel like I’m back at the beginning again, questioning everything. Wondering how this can possibly be the right thing to do..but here we are starting all over again. New drugs, new side effects, back into the unknown.

Between labs, pre-meds, and chemo we were at the clinic for over 7 hours. He tolerated the Avastin well but once the Irinotecan began things started to go down hill. About 15 mins. in he was visibly uncomfortable, gaging from nausea, miserable laying down but to tired to sit up. He kept cycling in and out of hot and cold sweats.

It was so hard to watch but really, it was nothing compared to what we would deal with once we got home.

I will admit was pretty nervous leaving with Kai once the infusion was done. He wasn’t looking good and it was just after 5:00. I was worried he’d be sick and we’d be stuck in rush hour traffic on the Mass Pike. As always, our wonderful infusion nurse made sure we were comfortable taking him and set us up with everything we needed just in case he were to get sick on our drive home. She gave him an IV does of Ativan (anti-anxiety/nausea) and sent us on our way with disposable chucks, a puke bucket, gloves, and liquid Imodium, just in case he had the explosive diarrhea or vomiting that often comes with the Irinotecan.

I am happy to say the ride home was a breeze! Unbelievably there was no traffic. We flew home and Kai slept the whole way. What a relief!

As usual, as soon as the car pulled into the driveway his little eyes popped right open. He began to wiggle and whine so I scooped him up, wrapped him in his blanket and carried him in. By the time we got in the house I knew he was not doing well. He was shivering and moaning and making just the saddest little face you have ever seen. I decided to change him into some clean, warm Pj’s and that’s when he really lost it. As I pulled his shirt over his head he began screaming and crying hysterically, tears streaming down his face and there was nothing I could do to console him. It was like his whole body hurt even just from being held. I don’t know if the chemo made him hyper sensitive or if it was the combination of all the drugs he had that day, but he just reacted and could not stop. Eventually I laid him down he took one sip of his bottle and drifted off to sleep. For a mom there is no feeling worse in the world than feeling your own touch is hurting your baby. All I wanted to do was kiss him and hold him, and tell him how sorry I was that he has to feel this way, but what he really needed was for me to put him down and walk away…it was completely heartbreaking.

Thankfully he slept well all night, waking at his usual 3 am. He was a little better by then but still obviously uncomfortable. He spent most of today in and out of sleep as well.

He enjoyed a lot of time in his crib, which is very unusual for him, but I am so thankful he found some relief in the quiet dark comfort of this own bed.

He did eat his usual waffle for breakfast and peanut butter sandwich for lunch. He’s had lots of snuggles and love. By the end of dinner he finally perked up a bit but it didn’t last long before he was off to bed. I got a few good smiles of him at the end of the day, so I will go to bed tonight with hope that tomorrow will be a better day.

Yucky chemo :(

Momma snuggles

Sleepy day

Perkins Early Connections Conference April 29, 2012

We have been to Perkins School for the Blind a few times now but only for Ophthalmology appointments. The first time we went I was stunned at the size and beauty of the campus, but we are usually there after school hours and very few people are around. The place was still a bit of a mystery to me, what kinds of kids come here? Do people live here? How many students do they have? Will Kai go here someday?
This weekend we attended their Early Connections Conference. Of course my mom came and Ashley also joined us.
As I sit here writing this I am still amazed at what a great experience we all had! My first challenge of the day was actually dropping Kai off to the day care they provided. I will admit there was some hesitation, I would even go so far as to say resistance, on my part…but I quickly convinced myself if I can leave him anywhere it should here. They deal with a variety of special needs kids everyday and they were very well staffed, so we dropped him off and walked away. Of course he did great and they all LOVED him. It was actually an amazing feeling being able to leave him and know that they get it. I told them he has a shunt and he doesn’t sit up, the vision loss was a given, and I didn’t have to go into any further explanation; ‘his shunt is programmable so he can’t be around magnets, and he needs help holding his bottle, and he has a g-tube but he also eats by mouth.’ I didn’t have to say any of that. They scooped him up and there he was jut like every other different kid. I could write a whole post just on this one tiny part of the day, and I was only there for drop off and pick up! Dropping him off my eyes welled, as they did many times that day and as they are right now. I instantly felt at home. This was going to be a big day!
So we were off to the conference. There were so many choices we decided to divide and conquer, Ashley stayed with me and my mom went off to sit in on a different workshop, then we would join at the end and discuss. The workshops were amazing. We sat there in a room full of parents, grandparents, siblings, and professionals all who have children special needs, and specifically kids with vision loss.
The past year since Kai’s diagnosis we have been so wrapped up in chemo and tumor and MRI’s that we are only now starting to really process and deal with all the rest. Kai is a special needs kid. He has global developmental delay, that we hope to work on but will most certainly be a part of the rest of our lives. He is blind.  Oh, and he has an inoperable brain tumor.
Sitting in that room with all of those other parents, knowing these facts of Kai’s life suddenly all felt ok.

We are not just ‘treating this tumor to preserve his vision’ we can not continue to just survive and keep him alive, he also needs to be able to LIVE!
Wow! It was a lot!

It was encouraging, and inspiring, and hopeful, but is was also still a little sad and VERY overwhelming!

I learned so much and have a lot of work to do to help Kai live his best life.   Once I figure it all out I will share some of the wonderful information, tips, tricks and ideas that we walked away with, but today I am still riding the wave of feeling at home. Knowing there is a place out there where being a little different is the norm and where there are  so many wonderful people willing to help. People who have dedicated thier lives to making life better for our families.
It’s crazy how we experience these days in life that just change things forever, your wedding day, the birth of a baby, the day you find out that baby has a brain tumor, the day you learn that the chemo you’ve been pumping into that baby isn’t working and he is now legally blind, then the day day you find yourself in a room full of families learning how to help their children live without their vision.
I’v had a lot of these life changing days in the past year. Many have been difficult, some have been terrible, this one was really really wonderful.

To learn more about Perkins and all they do visit:

http://www.perkins.org/

http://www.wonderbaby.org/

Avastin/Irinotecan April 25, 2012

So a decision has been made.

Next week Kai will start on Avastin/Irinotecan.

This protocol will be an IV infusion every two weeks at the clinic.

It is disappointing to be starting all over again, but tonight I am relieved that the decision has been made.  I went into today still not knowing which way to go and really they made it pretty clear that there is no right answer and we will end up trying most of these options at some point.  I guess I better get used to this.

While there is not statistical evidence that this treatment is any better than the rest, I have spoken to many optic glioma families who have had good results from this protocol.  I have been told their kids had very few side effects while on this and had good shrinkage and stability.  They also warned me that when they come off the drugs the tumor does tend to come back fairly quickly and sometimes even more aggressively than before.  At most we can hope that his will buy us some time, we can wish for shrinkage which will hopefully allow for some developmental gains, but we also have to be prepared for what treatment comes next.

This protocol is 1 year, but many people stay on it for up to two years if they are getting good results.  After that we are on to the next one.

The technical side: 

Avastin works differently than most chemo drugs, in-fact it is technically not a chemotherapy at all.  Typically chemotherapy drugs work to disrupt DNA replication at different points, causing rapidly dividing  cells to die.

How does this drug work?

Bevacizumab (avastin) is a type of targeted therapy known as a monoclonal antibody. A monoclonal antibody is a man-made version of an immune system protein that fits like a lock and key with a certain protein in the body.

Bevacizumab attaches to a protein called vascular endothelial growth factor (VEGF), which is required by the body to grow blood vessels. It is thought that by doing this, the drug stops tumors from being able to create new blood vessels to feed the tumor. This limits the tumors’ supply of nutrients, which in turn may slow or stop their growth. For this reason, bevacizumab is sometimes referred to as an anti-angiogenic drug. Another theory is that it may help by making tumor blood vessels (which are usually leaky) more stable, allowing chemotherapy to get into cancer cells more effectively.

http://www.cancer.org/Treatment/TreatmentsandSideEffects/GuidetoCancerDrugs/bevacizumab

I am hoping that because this drug works in a completely different way than the ones we previously tried, we will see better results…

The ‘common’ side effects of this Avastin are similar to what we have already been dealing with (and again anecdotally I have heard many kids have little to no side effects on this treatment)

• high blood pressure* (this is a new one for us, and will be treated with medication if it does occur)
• headache
• mouth sores
• diarrhea
• loss of appetite
• feeling tired
• feeling weak
• ovarian failure (when given with chemotherapy)*

The Irinotecan is a more traditional chemotherapy and will be given along with the Avastin.

How does this drug work?

Irinotecan is a chemotherapy drug made from a type of plant alkaloid known as a topoisomerase I inhibitor. It is thought to work by blocking the action of an enzyme in cells called topoisomerase I. Cells need this enzyme to keep their DNA in the proper shape when they are dividing into 2 cells. Blocking this enzyme leads to breaks in the DNA, which leads to cell death. Because cancer cells divide faster than normal cells, they are more likely than normal cells to be affected by irinotecan.

http://www.cancer.org/Treatment/TreatmentsandSideEffects/GuidetoCancerDrugs/irinotecan

There are many terrible and frightening side effects to this drug, but Kai is most likely to face loosing his hair, having lowered blood counts, and reacting with severe diarrhea; which will then be treated by yet another drug.

• diarrhea*
• nausea/vomiting*
• lowered white blood cell count with increased risk of infection*
• hair thinning or loss, including face and body hair*
• abdominal (belly) pain
• loss of appetite
• feeling weak

Now that the decision has been made, we will be doing our best to enjoy this week before having to start up again.

 We plan to spend lots of time watching Kai’s hair blowing in the wind, while we still have it!  While loosing his hair is the least worrisome of the side effects it is the one that, to the rest of the world make it undeniable HE HAS CANCER.  It will take some time for us to adjust to the new changes, but today I am hopeful that he will tolerate this well, have good results, and I am hoping beyond HOPE that we will continue to see those smiles and laughs he has been dishing out the past few weeks!

Pick your poison April 24, 2012

We are off to the clinic in the morning to Talk about what to do next with Kai.
I was given 4 protocols to decide from and I still have not made a concrete decision…. How can they expect me to make a decision like this anyway? I am not an oncologist or a doctor or nurse. It took A&P twice just to get a C. What do I know about chemo!
Thankfully I have had some time to do some research in the past week, and thankfully I have gotten some insight from other optic glioma families online. I have narrowed it down to two.

The two i eliminated were both oral chemo that would be administered at home by me…there is certainly some appeal to this, not having to travel into Boston every week, but honestly I just don’t think I’m ready to be the one giving him the poison myself. It’s hard enough brining him in there every week for someone else to give it to him, but at least then my only job is to comfort him and make him feel better as best as I can. There are also a lot of precautions I would need to follow In order to do the chemo at home and the risks seemed pretty severe. I just don’t think I am ready for all of that right now.

So that left us with the other two: avastin/cpt11 or Vinblastin
They both have their pros and cons and I am really still up In the air about it. I hope they booked a good amount of time for us tomorrow because I have a LOT of questions!

It’s official April 18, 2012

So it official Kai has failed off of his first chemo protocol.
It’s been a few weeks in the making, and not a total shock, however no less disappointing.
Over the past few days Kai had a series of vision tests, at Perkins and Children’s, and just as suspected his vision has worsened. His visual field has decreased as well as his visual acuity.
As i understand it this can mean a few things: a) prolonged pressure from the tumor/hydrocephalus is causing delayed atrophy to the optic nerve b.) the chemo itself has built up damaging levels of toxins in Kai’s body which is causing further vision loss. c.) the tumor is growing and is just not showing up on he MRI yet.
Either way what we are doing is not working so he has been pulled off this protocol.
We were sent home today, no chemo, with a list of options (and consent forms) for what to do next. We have to decide by next week.
Let the research begin.

A healthy dose of Reality April 11, 2012

This weeks clinic visit was a bit different for us. My mom was working, our nurse practitioner was on vacation and we had to be there extra early ( not that that’s anything new) for Kai’s first swallow study. Thankfully our good friend Molly came to spend the day with us and the time just flew by!

Swallow Study I had been avoiding this test for a few months now, but recently Kai really seemed to be having more trouble. He has been coughing and choking a lot and sometimes for no reason (maybe just on saliva) so I finally mentioned it. I knew they would suggest a swallow study and honestly I was pretty terrified of it. Not because it’s a difficult test, Kai was totally fine stuffing his face on an x-ray machine, but I was afraid they would tell me he could no longer eat/ drink by mouth if it came back bad. Everyone assured me that at most we would just have to ‘thicken’ his liquids, so I finally agreed to the test. Sure enough Kai was aspirating. They saw it right away with the clear liquids and he actually didn’t even cough which means its probably happening a lot more than I thought. He seemed to do just fine with his peanut butter sandwich!
The recommendation is: thicken his drinks.
He never really drinks clear liquids anyway, he mostly drinks the pediasure mixed with breastmilk or a fruit/ yogurt smoothie. They said a smoothie is fine but we should thicken the pediasure. I am taking this as motivation for less pediasure, more ‘real food’ smoothie. It’s what I always strive for anyway but they make that dam formula so convenient, and of course Kai loves it because it’s so sweet and easy to drink. Looks like wel be spending even more time with our friend and savior the vitamix! Maybe the vitamix needs a proper name of it’s own…suggestions anyone?!??
There is one other tricky little problem we ran into last night that I don’t quite know what to do about, vomiting. I woke up to Kai covered in his own vomit twice last night. He also vomited seconds after I gave him his medicine (through his g-tube) that was supposed to help prevent the vomiting. :/ since he sleeps on his back i have to assume he is aspirating when he vomits as well. poor kid, it was not a good night.
I usually skip his night feed on chemo nights afraid that this would happen. I would think to myself ‘An adult on chemo without a feeding tube probably wouldn’t want to eat after chemo so why should I force Kai to’ but yesterday he barely ate and I just couldn’t stand the though of all that chemo sitting in his system with nothin to flush it out. So I decided to hook him up…I guess my first instincts were right after all. No more tube feed the night after chemo!
He is pretty beat today and is taking a little nap next to me in the living room right now. His sleeping has been a bit ruff the past few weeks, even without the vomit episodes. He has decided that 3:00 am is again a good time to wake up for the day, blah! Makes for a long day. Hopefully we can break that new habit pretty quick! Maybe another sleep study is in order! Scared him straight into sleeping last time! Ha!
So yes the sleep study. I am actually anxiously waiting for it to be scheduled now. I know I said I’d never do it again but Kai IS having trouble breathing and it scares me to think he may not be getting enough oxygen at night. I find myself going to check on him more and more and each time I have this second of terror before I open he door…
He also had a pretty bad ‘staring’ spell he other day when his OT was here. His eyes were locked in a downward gaze to the right for what was probably 30 seconds or so. I was talking to him, touching him, even moving his head but he would not come out of it. It has always been questioned weather he was having seizures and I never thought he was, until now. It was pretty scary.
So bring on the sleep study! I’d rather live with the reality than be living with increasing fear of what could be happening.
Speaking of reality, we got one more healthy dose of reality yesterday when I asked to see Kai’s MRI again. I had been trying to look at the MRI at home but wasn’t able to see a clear image of the tumor (I guess I need to start studying radiology) so I asked to see them again. As we were looking at it Kai’s doc. Showed me he part on the scan that shows the measurement of the tumor. I have asked many different doctors countless times how big Kai’s tumor is and no one would ever give me a clear answer. They would always just say ‘ it is quite large’ or Kai’s tumor is big for an optic glioma’ or ‘kai’s tumor is larger than most, but not the biggest we’v seen’
This always left me wondering, especially when other optic glioma people would talk about he size of their children’s tumors. so finally there it was in black and white on the screen… 7.8 cm side to side and 4.4 cm front to back.
LARGE. And that measurement is just the largest part of the mass. This does not account for the beginning of he optic tracts before the chiasm or the evidence in the brain stem. They also could not get a good measurement from top to bottom. But either way a mass over 7cm is considered to be large. Now we know…
Despite all of this the reality is Kai has been soon well. He has been happier and getting stronger. He is smiling everyday, making new noises and is laughing a lot. He is more content and a lot easier to deal with these days. Finally some improvement! I am a little apprehensive about getting to excited because I know he is only doing this well because we took him off the vincristine. I am happy to keep him off of it and his team agrees but that also leave room for me to be worried that without it the tumor wil start to grow again…as always I am trying to just enjoy he time we have now, we can worry about tumor growth in another three months at his next scan.