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One Year Anniversary

It’s been a minute. Our last post about Milo was right before our third baby was born. We didn’t mean to wait so long to post, but life got crazy. Like, real crazy…. Here is a quick catch up and then onto Milo. 

We had a baby girl! Olivia Charlotte-Rey Ireland was born on June 29th. She is now about to be 6 months old and is happily enjoying foods and being entertained by her brothers. 

We moved! When Olivia was only 7 weeks old, we packed up everything in a week and settled into our new home in Fairfield CT. All of us are enjoying the extra space and the easy access to nature.

As for Milo, today is a big day. December 23rd is officially the 1 year anniversary of Milo being sent to the emergency room and PICU after having breathing issues and a scan showing a large mass on his lung. Wow, what a year it’s been for us, Milo and the world. Today was filled with a lot of emotions for us and there were definitely some hugs and tears shared. 

We have been a bit silent because, honestly, it’s been really tough.  Since our last post Milo entered his hardest chemo phase one day after Olivia was born. Remember I said we were busy? Well, it was the worst one by far. He lost the remainder of his hair, shed quite a few pounds and had to have numerous blood and platelet transfusions. It was hard, but we knew it was coming and we were prepared. Then shortly after we moved he entered his final phase - Maintenance phase. It was a time of celebration. He is not done, not even close, but things are so much better. Maintenance phase will continue for the rest of his treatment which will finish approx May 2022.  He still takes chemo daily and has clinic visits, but the drugs are mild in comparison to the gaultlet he went through. He will continue to have clinic visits for blood work every couple of weeks and IV chemo once a month. So, our hospital visits are fewer, the drugs are milder, and so far (knock on wood), we’ve stayed out of the emergency room. 

Since starting Maintenance Milo looks and seems to be more like himself. He is happy, energetic, funny, silly and growing his hair back! He has been rocking online kindergarten, scooting around our neighborhood, sledding in the snow, and being an awesome 5 year old. 

Happy holidays to you all and let’s hope 2021 is a better and brighter year!

Our new address:

273 Woodside Circle
Fairfield, CT 06825

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June 22, 2020

Hi!  It's been a bit since we last posted. Mostly because things have been going well.  After we were given permission to administer Tylenol, we did - and it worked!  Milo's temp still began to spike right on schedule, but the Tylenol kept it at bay just enough so we did not need to visit the ED.  It made such a huge difference.  Milo was able to rest and recover at home and not be kept waiting in the ED for unnecessary tests.  Poor kid has already had 5 COVID tests - those swabs really go far up there and holding a 5 year-olds head still is not fun.  Although, for what it's worth, Milo is getting better (if that's a thing) at all of his tests and prods and pokes.

Speaking of prods and pokes,  Milo had an MRI/MRV today to check on his cerebral thrombus (blood clot) and intracranial pressure.  Crossing our fingers for a good amount of blood clot shrinkage.  For those interested, an MRV is a specific type of MRI that examines the veins without the overlying tissues being visible.  They use an injected contrast called gadolinium, a rare-earth element that has some special specific magnetic properties that make is perfect for this type of contrast imaging.  Fascinating stuff.  We will know more once the imaging has been read by the radiologist.

For the past couple of weeks, we have mostly been enjoying being with our family, wrapping up school, and generally trying to be normal in this COVID world. Milo's immune system has been ok, so his risk is similar to everyone else, although still 2-3 times more likely to have complications and/or get sicker due to his condition.  Not a whole lot has changed in how we maintain safety, but our safe circle has grown to include a couple other families who are particularly extra safe.  It's been nice to have kids be a little bit kids during all of this. Dirt is fun.

Here's a strange little anecdote from this crazy time: There were four 4.5-5 year-olds sitting apart, but together, under a tree having snack.  When they were finished, without any parent intervention, they all put their own masks on and set off to play together.  A sign of the times.

It's been a nice run.  Friday starts the next phase and it doesn't look fun.  Both methotrexate (the brain toxicity drug) and peg asparaginase (the blood clot medication) are both coming back.  As well as a couple new drugs we have not encountered yet.  We are all bracing for a good amount of time in the hospital.  We will be keeping everyone posted on everything - including the arrival of our newest member of the family - which should be any day now... :-)

Stay safe and hug your people!

If you would like to donate to Milo and the Family, please visit Milo's GoFundMe Site.


June 5, 2020

It's clinic day.  We have had one treatment between the last post and now, and another ER visit at exactly 2 days post chemo.  I guess we'll see if we are in the ER on Sunday and hope for the best.  There's a possibility we might get a chance to get out of an ER visit this time as we have been given permission to administer Tylenol just before he usually gets the fever.  If after one dose, he's not febrile, we are safe! If not, we still go. Le sigh.

The kids have been pretty sheltered from seeing the newest crisis (not that it's new, just currently in the fore) mostly due to Milo's condition and not feeling safe in big crowds during a pandemic.  We're mostly staying in and doing school, playing tons of legos, trucks, trains, blocks, watching historic space launches, and creating art.  We asked Milo what he could do to make the world a better place for a school project and he said, "Put art all over the place that's beautiful." Sounds good to us.

Colin had his birthday!!  He was very excited and seemed to actually think the Zoom party was hilarious.  Lots of gifts and cake and the little man is suddenly 2. When did that happen?!

All-in, we're good. Tired, stressed, ready for the new baby to arrive, but good.  2020 has been, to say the least, a challenge. Stay safe, hug your people, and think happy thoughts when you can.  Don't forget to vote.

If you would like to donate to Milo and the Family, please visit Milo's GoFundMe Site.


May 18, 2020

Last night was another visit to the emergency room.

Milo goes to clinic for his chemo every 10 days during this phase and so far he has had two rounds.  With both, at exactly 2 days after his chemo, he spiked a fever. He woke up yesterday feeling warm and not having any interest in eating food, therefore we were on fever watch all day dreading the inevitable. At 4:30pm he went up to 101.7F (100.4 is his threshold), which led to a phone call to his oncologist team and drive up to Columbia. Once in the emergency room he was tested, once again, for COVID-19 - his fourth time! - and had blood drawn to rule out infections, anemia, and Neutropenia. Tim was super dad and begged them not to give him antibiotics right away. Last time he was given two extremely strong medications, on top of the one he already takes on the weekends, and his stomach was a mess for days. 

All of his blood-work came back negative for problems or infections so he was given some Tylenol and discharged to come home around 10:30pm. 

Today Milo woke up in great spirits and had more of an appetite. We are finding this phase of chemo definitely has a pattern, and it will be interesting to see if after his next clinic visit he spikes a fever 2 days later...again. 

On a happier note, 10 days in between visits has been really nice. He feels sick at first, but then has many days of feeling good and we don’t feel like we are constantly at the hospital. We have been enjoying lots of family time, taking drives or walks to get out of the apartment, and lots of zoom school and OT appointments. Today we drove up to our friends house who live in Ardsley, NY and while in our car we made lots of noise and wished their 5 year old a happy birthday.  Milo and their son, Theo, have been friends since they were babies and still get so excited to see each other. It was surprisingly emotional seeing friends and not getting to actually hang out, but all the same we had a lot of fun.

We'll keep you all posted on how things are progressing as time trudges on. Stay safe and hug the people you can. :-)

If you would like to donate to Milo and the Family, please visit Milo's GoFundMe Site.


May 8, 2020

Yesterday we went to the emergency room. Again. 

Milo has been feeling very tired and nauseous from his Chemo on Tuesday and even with anti-nausea medicine, he doesn’t have much of an appetite. It doesn’t help that he also has to take three different oral medications twice a day. So much gross liquid. 

Even with feeling ill he had a pretty good Thursday morning. At school he got to create a cityscape using household items such as toilet paper and paper towel rolls. He was super excited and even created a whole underground sewer system. Next was Occupational/Physical Therapy where he created an ice cream cone using construction paper, shaving cream and glue. It was messy and fun! 

However, he seemed pretty tired through it all and refused to eat. Around lunch time he was laying on the couch and while I was rubbing his head I noticed he felt warm. A quick thermometer check (a cancer patient’s most essential item) showed that he had a temperature of 100.7F. We decided to get our bags together because we knew we would be heading into the emergency room. Anything above 100.4F basically triggers it.  A check 10 minutes later showed that he went up to 101.5F so we called his DR., gathered the family, and drove to NY Presbyterian Columbia. 

At the hospital Milo was swabbed for COVID-19 again, had a blood culture to rule out infections, and took blood samples to test for neutropenia (when white blood cells go too low) or anemia. He was given two different types of antibiotics all while his temperature increased to over 102F. His blood work came back negative for everything including the neutropenia and his temperature went down after two rounds of Tylenol, so he was given the clearance to go home. Colin and I picked Milo and Tim up around 8:00pm and our exhausted family headed home for bedtime.

The doctors have no idea why he spiked a fever. With cancer patients, a fever can be caused by so many factors and all too often you are left not knowing the cause. All we can do now is be thankful that he came home, and besides being tired and nauseous, he is okay and handling it all like a champ. He gets a few days of only a few medications a day and then it’s back to the clinic for his second chemo session where they try to increase the methotrexate dose.  Good times!  Love to everyone and stay safe.

If you would like to donate to Milo and the Family, please visit Milo's GoFundMe Site.


May 5, 2020

Happy Cinco De Mayo, or as the nurses said to Milo today, "Should be Happy Cinco de Milo!" It was a good day.  A strange and wonderful day.  The type of day as a parent of a cancer patient is so odd.  You are excited;  Excited to restart poisoning your child so they don't die.  It's a very weird place to be.  All that said, it really is amazing to begin phase 3.  Milo took it like a champ.  We are watching carefully for any side-effects as he is taking Methotrexate again, but so far, he just seems a bit extra tired and a little nauseous.

This past week was pretty sweet leading up to today.  Milo was in such good spirits and a ball of energy.  We had spider web building, a baby shower, and played countless sessions of trains.  I managed to get some financial aid from the government and we looked at potential new places to live.  Milo shared his creations with his class mates and really engaged with school. Colin has been popping out words like a crazy man and is cute as ever.

We're still taking everything one day-at-time and enjoying the time together as much as we can. Milo's new phase comes in 10 day bursts, so there's a lot of time between chemo sessions. He's on a LOT of different meds due to his complications - potentially a total of 9 different medications at any one time - so there's plenty of "work" our little monster has to endure. He's showing us super strength everyday and his new cap jar is already about 1/4 full - yeesh.

Love you all and we'll keep you posted on everything.  Please enjoy Milo wearing a headband so we can actually see his face.  :-)

If you would like to donate to Milo and the Family, please visit Milo's GoFundMe Site.


April 29, 2020

Another week, another slight disappointment.  We went in on Tuesday to check Milo's blood counts in hopes he would be ready to actually start phase 3 of his chemo.  We have been delayed since April 7th due to low white blood cell count.  Tuesday, unfortunately was no different. He was still not ready. The silver lining is he is feeling pretty great and generally enjoying being a 4 year-old.  The bummer is, he's not able to continue treatment.

In between the not-so-fun and the mini letdowns, we got to enjoy some really amazing family time.  With my work basically stopped, I have been able to spend some incredible days with the boys and Calah, enjoying some of the more empty parks.  We have gone to Flushing Corona (ya, we know...) park a few times and gotten in some serious scooting and spring-like play.  The boys have really gotten to be themselves and get out some much needed energy.  We also had some serious fun doing science experiments and creating a "lava lamp" with oil, water and alka-seltzer.  Good times.

Today, we went to check in on his eyes as related to the intracranial pressure.  Milo seems to be a bit of an anomaly when it comes to side-effects so we now have a giant team of Doctors tracking everything.  The results from todays scans and retinal photos was good!  They see no problems with his optic nerve and/or visual cues or increased pressure. This is either because the Diamox is working or he has naturally dealt with the underlying issue. For the time being, we don't really know and he will continue on the Diamox and we will check in with this team in 6 weeks.  What we do know is that currently he is not at any risk of losing his sight.  We all take a breath.

The next hurdle starts Tuesday when we go to check his WBC again and see if we can begin phase 3.  Once we start, if nothing goes wrong (shrug), Milo starts the 2 year timer for the remainder of his treatment. There will certainly be twists and turns and possible delays, but it will be a huge moment for him and us.  There's so much in question right now, but a little bit of a timeframe will be a nice respite from the unknown.

On the home front all is well. Milo is continuing to do school and occupational therapy sessions through zoom. Milo also filled his cap jar! Remember the jar filled with caps from his daily shots and beads every time he takes a medication? Well he filled it and received a light up garbage truck that he has wanted for a long time! He happily shared it with his classmates this morning on zoom. We couldn't be prouder of him for all the bravery he has shown through all of this so far.

Be safe out there!

If you would like to donate to Milo and the Family, please visit Milo's GoFundMe Site.


April 20, 2020

We headed home from the hospital Sunday at about 2:20PM.  Milo was in good spirits and we were so happy to be seeing Calah and Colin again.  What a few crazy days.

The end result from everything was that the doctors were right. Milo had elevated intracranial pressure that needed to be dealt with. I learned that the measuring device for children goes to 36. As I mentioned, normal is 20-25 or so.  The Dr. who performed the LP told me that the spinal fluid went all the way up and then dribbled out the top of the device. So, ya, it was elevated - relatively dangerously elevated. Based on the visual exam, he did not have Papilledema and based on the objective pressure test, they agreed with that assessment, but medication, a fluid draw, and future LP pressure checks will be needed. This kid can’t catch a break.

With every twist and turn for Milo, we are finding that all of this sometimes seems harder on us than on him in certain ways.  He’s traumatized without a doubt, but he’s also four and a half and 10 minutes after a pretty intense and insane procedure, he’s jumping up and down on the couch laughing his face off. Meanwhile, we’re exhausted and freaking out for him while putting forth a strong face.  I guess that’s our job.

So, Milo starts a new medication, Diamox, to help alleviate the pressure in his head and behind his optic nerve.  The fear from this type of pressure is blindness and/or tunnel vision. This medication is often used for glaucoma. It’s all just so much for our little man, but he took his first dose like a champ tonight.  We meet with his doc via video tomorrow to discuss how this will impact his treatment going forward. He’s supposed to start intrathecal (LP/spinal) methotrexate injections this Friday. We are all betting this is not going to happen.

It’s a crazy time for everyone and this new wrinkle just adds a new box we need to check everyday. Milo has a “Cap Jar” where we let him add every cap from his twice daily shots (each needle has two caps) and add a bead for every medication he takes when he takes them without putting up too much of a struggle. He gets a wish toy when it’s full. It’s a pint mason jar and it’s almost full.

So, we’ll keep everyone posted on next steps and how things are progressing. In the meantime, as always, stay safe, we love you, and keep on keeping on. Hugs from us to you.

If you would like to donate to Milo and the Family, please visit Milo's GoFundMe Site.