Good News

Yesterday, Elias’ test results came back from his bone marrow and LP. It was clear. This is the first clear test he has had to date. It doesn’t mean he is “cured” but it is good news. The test can not measure the last 5% of blasts, which is was essentially what Minimal Residual Disease is so on that front we stand the same. I am trying to accept that it might take 5-10 years to get the “he’s in remission answer” but for now this test result is all I needed to be able to have some hope. It means that the cancer is not growing enough to be detected with the tests that technology limits them too on site. The MRD test will not ever be done again, because even if they did a test they would not know what to do with the results of it. I have to go over this “theory” again and again with other people, It is hard to understand that medicine  not having all the answers you need/want no matter how pushy you are (and I have pushed). I don’t need a definite answer (since they don’t have one for me). They do not know if they can cure Elias, but they are trying to it is a very well executed educated guess which is as good as it gets.

On May 17 Elias had an Echo Cardiogram before he is given anesthesia. This test was given to make sure his heart was healthy and functioning. Elias is given Dexamethazone (chemo) that could damage is heart, and other things that might be hindering its function (Aspariginase). They found a blood clot that was 1.9 cm in size in his right arterial chamber. This of course was bad news and the reason why I choose to stop writing. Things have been dragging along and no really progress has been marked. Being put in the hospital every other week hardly makes a story worth reading, putting large blood clot on top of the cake made of crap was hardly enough to keep me writing anything. Now with the new added issue we have to give him two shots a day to thin his blood for the next 3 months after a 4 day stay at Children’s to adjust med levels. He is not allowed to play on playground to avoid falling or bumping his head which would mean bleeding that might not stop. Also he has to get additional blood test twice a week on top of his regular chemo regiment and other weekly tests. He has another Echo in three weeks to see if the clot has gotten smaller in size or stayed the same, which would be good news. I’ll take what I can get for now.

Side Notes.

Elias is the Pedal Partner for the John Hancock Team that is riding the the Pan Mass Challenge. I will not be riding in it this year since I hardly have enough energy to walk these days.

He is going to meet with his Make-a-Wish wish granter today, and is very excited about it.

As far as Elias’ status is mentally he hates receiving the shots 2-3 times a day and is getting good at taking all his pills…. I still find it hard to believe that a 6 year old can even swallow a pill… Isaac can do it now too and does it with his vitamin gummy bears to show off.

 

More troubles

It is too bad that we just can’t seem to get good news. I wish it would come our way I feel like it would be good to have a good test. A test that came with good news attached to it. I am disappointed that it is not in the cards today. He will be hospitalized in the morning at the Children’s Hospital. I am trying to keep my head on straight about all of these things that keep getting thrown our way. I will not be writing about Elias’ on going health issues for a while, until things get better. The subject is exhausted, when I am able write something that I feel is substantially good news for Elias hopefully this is sooner rather than later. Thank you Everyone!

Getting there

A week or so ago I said to myself ” I am not going to worry about a bone marrow transplant anymore, if he needs it we are going to do it.” I have been terrified of having to go another step further to save his life. You do what you got to do. End of story. I have always been quite fond of Pro and Con list, and in this case the Pro side to worrying was quite slim, unless of course you liked stress and the after effects. I have enough in our day to day life to think about.

Long story short, my load seems lighter. Instead of planning for the worst thing that could happen we are going to plan for the best. Yes, I love to plan, in the end the world keeps spinning and I have to keep up. In the morning I am going to be a year older and for some reason this birthday means something to me, as if it was time to set some sort of new life altering goals. When I was 20 I set high goals for myself most of which didn’t turn out as planned.  Now that I look back on the last 10 years I am not sure I could fit much more in to a decade. I always gave it my all and followed my heart. Looking forward 10 years, I see that we as a family will be much happier when Elias is healthy and are home. Waiting through this treatment has been grueling and hard to keep our eyes on the prize. Only another two, I hope.

Mom’s Day

We had a busy week this past week after we were released from the hospital. Our amazing friends flew us home for a couple of days. But this trip was very busy and we had quite a bit to do. Both my mother and Aaron’s Mom watched one kids each so Aaron and I could get work done while on the island. It was nice to do things that have nothing to do with the Hospital, and be productive in a different capacity.

Elias’ New school Teachers planned a magic show at Define on Amelia Drive. The teachers and parents brought all the children’ over there so everyone could do something fun together. I wanted to keep Elias out of the school so that he would not be upset that he couldn’t go back… Last time we went to the school for the afternoon he had a hard time for a couple of weeks dealing with the fact that he was too sick to go to school. This was so much better and he has some good stories to tell me about it. These little stories are what keeps all of us going.  I am sure the Jimmy Fund missed us all week (JK). Yesterday Elias had a stomach bug, and we had little sleep last night. The apartment is quiet and he is watching a show with a head set. My mother took Isaac and I was supposed to go to CT this morning to go get him but plans have changed because now I have the stomach bug too. Oh well, I am trying to look at it as a 48 hour unplanned cleanse. Happy Mother’s day to all the Mother’s out there… Life as a Mom isn’t an easy one, but having children that love you unconditionally is quite a gift in itself. Thank you to my family for always loving me and to my children for making me into a better person.

 

Spring is here.

So life is a broken record… In and out of the hospital , in and out of the Jimmy Fund, and back and forth everywhere else. I feel like an old rubber band that is thrown away from dry rot. Poor Elias never gets a break, the decreasing in his meds/chemo didn’t do a thing he still bottoms out in his counts and end up inpatient at Children’s. I am Happy that we can be off island and live near the hospital since we spend so much time there. Nantucket I am sure is coming alive after Daffodil all the summer people opening their homes, starting their cars, and organizing for the coming warm weather. Elias misses all of his friends at school and his dog Porter ” more than anything in the world “(it is really cute and sad at the same time). He loves to talk about energy lately. We have an app called Brainpop he has been into lately that has 5 min lessons, it simply explains everything from what is nuclear energy to who is Picasso? He likes to talk about how batteries work. He has taking a liking to Duct Tape, Sky Kids Movies, and French Bread with chewy crust.

He has started to see a physical therapist. He is too weak to walk unassisted without his legs giving out under his own weight. Too much time in bed from lack of energy. It will be nice when he can play again on the monkey bars and chase his brother around the yard.

We saw an Oral surgeon, Dentist, and ENT yesterday. His mouth gets infections from the after effects of the chemo/ no white blood cells etc. The infections are incredibly painful and we are trying to get to the bottom of it.  We have been inpatient this past week because he had a high fever, I couldn’t control his pain at home, and well It was just a nightmare. In 12 weeks his cycles will change and I am crossing my fingers for some sunny skies.

Elias also lost his first tooth in the hospital this past week and he is very proud that he has somewhere to put his straw..

The Story That Never Ends

Days fly by  –especially when we are not in the hospital and flowers are blooming. I am still having trouble trying to find a “place or thing” called Rest. Being able to put your head down at night close yours eyes and drift to sleep is quite a luxury, especially when you are a worrier. Even when I feel I don’t need to worry I worry about other people. It’s a true gift!

We are always trying to just get thought the day. After our last hospital stay over a week ago. The doctors are going to reduce some of his treatment in hopes that his numbers will not plummet so hard and that it turn will hopefully make it easier for his body to recover. This is what our fellow said “Elias has had more fevers than all of my other patients combined and then some more. I want to say by reducing some of his medication that he will not be in here as much but as we both know — Elias has a ton of fevers and his body’s reactions to the drugs are quite unpredictable.”SWEET!  Music to my ears (slight sarcasm). Either way right now he is chugging along as best he can. Isaac is having some serious separation anxiety, which isn’t a stunner… since he hasn’t even been around me, Aaron, or Elias for any length of time in 6+ months.

I spoil the boys and buy them ring pops and games to try to make up for not having other freedoms like a home or being able to go to school. Which sounds pathetic…. but really at this point I gave up caring about it. Whatever. No home? Home is a luxury we can’t have. And the saying “home is where the heart is” –is crap. The people who are saying that didn’t move 8 times in one year! I am so home sick it is really just makes me mad to think we can’t go back to Nantucket. I could but then I would chance Elias not being able to get the medical help he needs… So we go to my parents house in CT so that we all can be out of the 15th floor apartment in the city for a couple of days… and I would be able to drive up there if something happened. Having the two boys with drastically different needs is a bit much for one person to handle. You can picture Elias is trying to rest watching cartoons yelling at Isaac to be quiet and Isaac racing around the couch making car sounds and jumping the couch like vaulting completion . This seems well and all but not if Elias is on all of these drugs and can’t move. Hopefully the reductions in some of the medications will reduce his fevers so the little guy can get a break and put a smile on his face.

Where are the Dull Moments?

Before Christmas Elias spoke of how Easter was his most favorite holiday. As it turns out the reason why Easter was his favorite holiday was because he thought his cousins were coming to Nantucket and that they would all have an Easter Egg hunt at his great grandparents… and everyone would be together (which happens at least once a year). It didn’t turn out that way and he was overly bummed out about it.He loved his Easter basket but couldn’t even eat the candy. After he had a chance to speak to some of the family while he was in the ER he cheered up a bit, but still really didn’t want to be there. He has been having breathing issues for the past couple days and asked us to bring him to the ER at 2pm then at 4 he spiked a fever and at 6 we were admitted to the hospital for the next couple days.

Elias is getting to be and adult at the age of six. It is so depressing to watch a six-year-old boy who knows how to work IV pumps and X-ray tables and then you realize you are looking at your own son. It is not normal and it makes me upset that he will never be “blissfully unaware” again. I hope that we get out of this mess soon for his sake and for what he has left in his childhood . Not that he won’t have a childhood left. I am sure that he will but if you listened to the way he spoke you would realize that he is grown up and in control of situations in the hospital environment. I am so sad that he is like this while my other little boy is so happy-go-lucky, goes to show the drastic difference in healthy and not. I guess we can’t all have the good cards. I would love to make it all disappear. I hope that you all had a great weekend–holiday or no holiday, with the ones that matter most. Next year I am wishing for an Easter with everyone in the family to be together and a big egg hunt where Elias can run/walk around on his own and find eggs with his cousins.

Nantucket x5

Tomorrow is our last day on Nantucket we have been here for 5 whole days. I can barely believe I am writing it out in black and white! Though Elias is not feeling very well and is quite weak we took a chance that he would be ok and “knock on wood” he’s ok thus far.I try not to avoid people and pretend that nothing ever happened but that is a futile effort because I wrote this blog. It is hard to believe that I am writing anything… I actually prefer photography but life through photos is well just a bit to visual for me and I can not deal with looking at images of Elias sick…  it makes me feel physically ill. Just by being around Elias everyday all day I start to have he same symptoms he has. He burps, I burp. He has a head ache, I have a headache. It is humorous when I catch myself falling into the deep end and I try to shake it off and function. This is what happens when you live in a bubble with the occasional visitor. It is good to break up the monotony that I hang out in waiting for it all to be over with.

Things are not that bad now that the brain radiation is over and extended hospital stays are slowing down and becoming shorter if we are admitted. Anyone that has to stay in the hospital more than 30 days is bound be a bit unstable. I eat now and Elias can get out of bed occasionally and even walks around from time to time. Though he is stronger in body but is some what depressed –the only way I can describe it. He’s extemely quiet though I make him smile and giggle on occasion he doesn’t say much of anything. Not a good sign because he is more of a chatter box than I am. He doesn’t look at me when I talk to him anymore or anyone else. Too much time in the hospital with people talking over him maybe? He could tune out 5 doctors, a nurse, and myself if Ninjago was on the television. The moment I pull out the sight words flash cards he is so so sleepy and needs to take a nap! That I guess I have to take that he is doing alright and my little boy is hiding out for while and when he feels better I will too.

Being home makes me appreciate of all things the sound of the wind to the sounds of sirens. Nantucket is the place for me… a hide away for people who still value people and hate 5 o’clock traffic.

Stuck on the Mainland

Sunday.

We were planning to go to Nantucket this past Saturday for 5 days. The longest trip planned since we came to Boston in October. This time around going home was not possible. Elias is more home sick than ever, and I think I miss home quite bit too. You always want what you can’t have I guess. The grass is always greener and all of those other sayings I can’t stand! Elias was admitted on friday because he had a fever and was neutropenic. Same old sorry different day. We were out for 2 whole weeks accept for inescapable fridays at the Jimmy Fund. Elias will hopefully be released today but needs another blood transfusion before he is released.

Isaac is home with us and he puts a little fire back in his brother. Isaac was away for a long period of time but he was well loved and entertained so he was happy to see us and doesn’t seemed to have “missed” us very much. Mostly Elias complains about his brother breaking his Lego creations and says “Isaac way too loud”. It is nice having our family together again. I have missed us.

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Monday.

Elias was released last night. His fever went away and he needs a blood transfusion before he left which was uneventful, last time he had a text book huge allergic reaction which was very scary. But no reactions this this time around. Though it looks very scary going in (the blood). He needed it badly because he was getting sick and couldn’t sit up in bed. The look of a bag of blood from an unknown person going into my sons body to make him better is odd but I am grateful… Thank you to that person for giving blood to my son.

First day back home and he is going back and forth between the bed and the couch. He just laid down for a nap and I think looks pretty good considering what he as been though.But he is still pretty weak. The doctors left it up to Aaron and I to decide if we should leave the hospital because he was clinically able to be released but really… maybe he shouldn’t have. It doesn’t really matter now. I think he is better at home without the doctors poking and prodding him.

 

Just Good News Today

Our family has been apart for weeks and today Isaac is coming back after going to Florida with some of my family for over a month. He has been having fun swimming and enjoyed not bouncing around every couple of days. It is really too much for him to go from Nantucket to Boston to Connecticut and back again all the time. It had made him very unhappy and confused and in return he was crying and getting upset often. I am glad he went with them after being in the middle of the road about our decision to send him down south with my mother and sisters family. Love is good and family is best, we are so unbelievably lucky to have all the support we do with our families, friends and community. I do not want to think where we would be without all the help.

Elias is feeling better and he has started walking around again. Though he has a hard time using stairs… all elevators in the city. He tries and falls down from time to time. Elias has been getting a little stronger everyday. It is a slow process but he is happy and that is all I care about. He smiles and all is right in my world. He had more energy more often these days and I see him coming back to life just like the daffodils blooming and buds opening on the trees, very fitting. The first week of our cycle is by far the hardest with the endless pill taking, nausea, dizziness etc but we are on the better half right now. We haven’t been to the ED in 2 weeks! Instead of ED visits I push him around the city in a stroller. Elias is happy to look around and just be out of the apartment, it has been unseasonably warm and I am glad for it.