So, this story begins on June 1 at 5:05 a.m. when Brady arrived and changed our lives forever. He was 7 lbs 5 oz and 20 1/4" at birth...and, of course, absolutely PERFECT! Mike and I have had the time of our lives in Brady's short time here already! This first sign of any problem presented itself when Brady was just 8 weeks old. One day I noticed a bruised knot on his left elbow-of course, I was worried but because he was moving the arm and didn't seem to be in pain there was nothing to be done. The following week was his 2 month well check-his pediatrician suggested that it was a hemangioma but to be sure she ordered an x-ray to rule out a fracture-this came back negative so we thought we had nothing to worry about as hemangiomas are not a big deal. 4 days later he had another "bump" on his upper left arm. Over the next weeks both marks continued to grow and turn more black & blue so we decided to get them checked out by a pediatric dermatologist. He and a surgeon immediately ruled out hemangiomas and "guessed" they were myofibromas-to be sure they ordered biopsies the next week. So on Sep 23 we brought him to Phx Children's Hos were the procedure was done-he handled it well and by bed time was back to normal Brady. The next a.m. Brady and I dropped Mike off at the airport to head to Boston-when we got home he gradually went downhill. Finally I called his pediatrician-they said to bring him immediately, thinking he was having a reaction to the anestesia from the day before. The fever he spiked when we got there made them think he had an infection from the biopsies-we were sent to a clinic-blood tests showed that he was very sick due to a high white blood cell count. The next thing we knew he was taken to Phx Child. Hos by ambulance at 10:30 that night-what a long day to start this long roller coaster ride! He was admitted into the PICU where he spent the next week. It was Friday the 26th that he was officially diagnosed with AML-Acute Myelogenous Leukemia which is a rare diagnosis for a baby as young as Brady. He was very sick when we arrived and throughout this initial week. His liver and spleen were so enlarged due to the cancer cells in them that he could hardly breathe on his own as his diaphram could not fully expand. He had a breathing tube placed to do the work for him-this was hard to see because he was so medicated in order not to feel the pain and discomfort that go along with the tube. So, for about 5 days he was "asleep"-it was a great day when I got to hold him again after those agonizing days! Once the tube was out and he was breathing ok we were moved to the oncology floor. This was a big reality check to be among others dealing with their very ill little ones as well. In other ways it is also a comfort to be here and draw strength from those around you going through similar situations. It was a couple days later that Brady started to show signs of chemo side effects, which are the WORST!! It broke our hearts to see him in such pain but he mended them with the courage and strength he displayed to get through the rough parts. The worst thing Brady went through was mucasitis-this is caused by the chemo attacking the mucas that lines the entire GI tract. This lasted for about a week and then gradually started to subside. The next bump in the road were the unexplained fevers he was getting. This is uaually a sign of infection but all of Brady's blood samples were coming back negative for any. Sooo, they did a CT scan to double check things...this showed 2 nodules on his left lung. At first, we were told that most likely this was fungus, which is not the best case scenario. However, (we are still waiting for the FINAL results) all preliminary testing are showing no fungus! The same day this biopsy was done Brady also had a Broviac catheter placed in his chest. This is a long term IV (as I think of it). Medicine can be dispensed and blood can be drawn from this device and it stays in him until after his treatment is completely finished. This prevents the risk of infection with new pokes each admission and the pain that goes along with them. As far as Brady is concerned, life is good with full function of his arms and legs to kick around again! He did spend a few days back in the PICU after the procedures were done but has recovered nicely and has been back on the floor since Saturday (Sep 19) - since then he has been a little more himself with each passing day! I think that is the beginning of this story as condensed as I can get it - oh wait, one more thing...the 'bumps' on his arms are gone! The left arm was the largest and there is some discoloration still but you would never guess those are how this whole thing got started. It is amazing to see the chemo work from the outside of his body. Once again, thank you all for everything! Mike and I hope this site helps us all stay even more closer connected as Brady progresses through the treatments ahead of him and into remission!
Sep 25, 2012 2:31am
Okay friends, let’s catch up!
Wow, I know, it’s been a long time. Way too long. I will put everyone at ease early with, yes, ‘no news is good news’. Things are good. Actually, things are great. But the ‘things’ are still …here-everywhere-abundant-overwhelming-unimaginable-consuming-relentless…sounds a lot like that cancer word we are so familiar. Wow, never really thought about that until I just saw the words. The same adjectives can be used to describe the actual disease and what it makes everything around you feel. Unbelievable.
Okay, I have a lot to say. This blog has been quiet – that is not to say there hasn’t been plenty to tell. My mind races every minute of the day to keep up with the demands that Brady faces. Not only as the 4 year old that he so is but as the fighting to live patient that he equally has to be. Soooo, let’s get going…
I left you hanging waaaaay back the beginning of May when Brady had his dental work done. That day, May 7th, is definitely one to go down as one of ‘those days’ in the midst of this journey. Maybe when I type this my stomach won’t turn upside down like it does when I say it aloud (here goes)…in the end he came out of the o.r. after 2 ½ hours with 10 less teeth. No, that is not a typo - they pulled T-E-N teeth out of his little mouth. Oh, and capped 4 others. And, ya,that made no difference…my stomach feels like I just stepped off a roller coaster. But, as bad as it sounds, it was actually not a huge ordeal for Brady. He did amazing as always. I don’t think I’ll ever get over how great he handles all the situations he is so unfairly forced into.
Anyways, that day, he mostly slept once we got home – which helped. When he was awake he was so upset about the blood draining from his mouth and didn’t really like having it all cleaned away. Thankfully, the bleeding stopped during the night and that morning’s ‘dried blood clean-up’ was the last. And just in time…the poor guy just broke down when I was cleaning him up. This is a rarity for Brady. Don’t get me wrong…he is 4 and has his share of the moments that go along with it. But, it’s not too often that he just loses it and is genuinely upset – even with everything he goes through.
Needless to say, his emotion took me by surprise. He just started crying…not the loud screaming whah! whah! whah!…the other one…the quiet, choked with emotion, tears overflowing cry. When our eyes met and he understood that I was asking what was wrong…because my mouth didn’t seem to be working. He answered, “Mama, I just really want my old, normal mouth back”.
Okay, (breathe first) let me work on that right after I attempt to collect the shattered pieces of my heart. Oh, wait…realization…I can’t ‘work on that’ because ‘this’ is another one of the many things I can’t fix for him in the horrific reality of cancer. In the normal world we, as parents, can count on and try to prepare ourselves for times like this. It’s hard to not be able to help/fix/avoid/take away anything negative. But, with that said, these are usually the times they (we all, actually) grow the most – so somehow this makes it more bearable to expect and go through together.
Cancer world reality, however, is completely unfair and too cruel for comprehension…especially the pediatric one Brady has grown up in. Not only does my baby (and so many, too many, others) have to go through and deal with all the absolute crap that goes with a cancer diagnosis - He also gets to wonder why I can’t take it all away or how I ever let it be…over and over and over again. I anguish over the same hurtful truth over and over and over and over…
Anyways, as you can imagine I didn’t really know how to answer Brady in that moment. I mean, yes the logical answer went something like this…”Oh, Baby, I know. (Actually I don’t) I’m so sorry you have to go through this. (I hope my lame apology helps in some way, yet again) It’ll be healed soon and you’ll feel so much better. And you’ll get used to the change in just a few days. (that’s what they are telling me anyways)”. My heart just hurts with answers like this. I guess it’s the whole situation. It’s not supposed to be like this. He’s supposed to fall off his bike, scrap a knee, and cry. That’s when I would get to step in as SuperMommy and get to make it all better. My words and hug alone would stop his crying and my heart would heal and forget along with his knee. Yes, our bubble was popped long ago and I don’t have a lot of experience as a mom outside this cancer world. But, strangely, I can still imagine it.
Anyways, it’s his words. How precious they are. I undoubtedly consider them to be one the greatest things I will ever experience in this life. Every single day he says the most amazing things. And as he so innocently explains about this or asks about that I struggle with emotions. I so vividly remember when this all began, I would pray to make it to the day we’d hear his voice and what he had to say. All the while, I also thanked God and took comfort that I didn’t have to explain what was going on to him and answer what I knew would be the hardest questions of my life. I watched as other parents had to have these conversations with their sick kids. I remember thinking I got off easy – sort of a temporary hall pass. And, I still, to this day, believe Brady’s infant age at diagnosis had a lot to do with how he handled all the treatments. Too young to even speak equals too young to know anything about the outside world. As long as his basic needs were met he was happy – he didn’t have all the mental obstacles to deal with. He wasn’t missing his school, friends, family, his own bed, going to the movies, a favorite restaurant ect. ect. – he just wanted and needed mommy, daddy, and the love that surrounded him.
Well, those days are over – his words are never ending and I am starting to get glimpses into his thoughts about all that he is put through. He shocked me a couple weeks ago…we were having a conversation about thumb tacks – you know, just a typical innocent 4 year old talk about a simple little object. Ya, right – not in Brady’s world. It went something like this…
Brady: ‘Mama, what’s a thumb tack?'
Me: ‘Ummmm, well, it’s a sharp needle thing you use to hold things up on a bulletin board. There’s a piece of plastic attached to it that you can push on with your thumb’. And I’m thinking, how weird, funny, and just so innocent and beautiful it is that a kid can have a completely serious conversation about anything! And then he hits me with…
Brady: ‘Ooooohhh! You mean like a needle needle – like for my port, or on a syringe, or for my shot?’ Sounded like he wanted to say, ‘why didn’t you just say so? We could have avoided all confusion if you would have just related it to my world mom!
At this point, he still mostly thinks what he does is normal – all the appointments, medicine, and procedures. In his reality, these things are Brady’s normal so he just doesn’t seem to question but rather go with it. Although he is aware that having a port, for instance, or wearing a mask on windy days are not things other kids deal with – I just don’t think it has all clicked yet. So for now the truly hard questions have yet to come. We don’t really not talk about any part of this around him – we are not trying to hide things from him. We do, however, keep things positive and try to minimalize as much as possible to keep his head and heart as young and innocent as possible. In the meantime, I have to be more prepared for his responses. The thumb tack talk was a slap across the face. He was fine and so matter of fact – and this, I think, is what hurt the most. A child should not have those thoughts or that vocabulary learned from personal experience. As his mom, it makes me sad.
So, that was the beginning of May (I promise we are going to get a lot further a lot faster…soon!). Um, okay, the next week – Saturday, the day before Mother’s Day, he potty trained himself! I am not kidding. He just decided that that was the day. He had two accidents over the following 24 hours and that was it. After 5 nights of me still being hesitant and making him wear a night time diaper he says, ‘mommy, I’ve been dry eeeev-er-y night. Please can I not wear a diaper no more?’ Ok, sure. What’s the worst that will happen? Let’s try it. I threw out every last diaper the following week!
And we concluded May with the beginning of the 3 round of treatment in New York! I turned 34 in the Big Apple while Brady, 2 days later, turned 4 in Boston! He had so many people that turned his day into many and filled them all with so much love! I think we officially celebrated a total of 5 times this year! Not to mention the day he got to wear a BDay crown his teacher made for him the day he got back to school! Needless to say, he is already looking forward to being 5! He told Nana a couple weeks after his birthday (when we came home for a few days in between infusions) that, ‘I’m almost 5 now Nana’! Oh, Brady!!! You are so silly!
The 3rd round went great! It really is like I’ve said from the beginning…the travel and being away from home is the most difficult part. The medical stuff is easy breezy for him – because of everything he’s been through this is literally like a walk in the park. And, thankfully, every time we go he does seem to be even more comfortable than the time before. Just like any normal kid he adjusts so effortlessly, even to the most un-normal things.
We got home just in time to enjoy the most intense part of the hot Arizona summer - which was extra difficult this year because of the spring weather we got to experience while we were east. Brady moved up a class at his preschool and we doubled his 2, 3 hour days to 2, 6 hour days! Big step for him…and, I won’t deny, me as well. Separation anxiety is a constant struggle, it seems, for either one or both of us at any given time. After a short 2 week honeymoon phase of being in a new exciting room it seemed to finally hit him that he was there a lot longer than before. He went through about a month of the ‘I don’t like school – crying when we got there – begging to just go home’. And then, just like that, it all just seemed to fall back in place and he is back to normal and loving the experience! Today he woke up so excited and said, ‘I can’t wait to get to school’!
This is another example of a ‘normal’ situation that is just so hard. I am fully aware that this is indeed a normal thing that most kids go through at various times. And, under this ‘normal’ umbrella, I am so overly thankful he gets to go through it as well. I am so thankful he gets this ‘normal’ experience. It’s this logical side of me that has to scream at the other side of me, the cancer mom side, to just gettheyouknowwhatouttathere! And fast, because cancer mom is freaking out!! She is thinking maybe he isn’t feeling well and that is why he is acting out of character all the sudden. She is thinking maybe she should just drive him right to clinic to get blood work to find what is most definitely the reason for all this. She is thinking that her baby maybe just needs a break. He did just finish yet another round of treatment/travel. He does everything we ask to try to make him better forever without question. She thinks she just wants, this one time, to just pick him up and be that Super Hero and just walk out the door, tears gone. Yep, these are the good times but the tricky on the heart ones too.
In addition to school, Brady’s schedule has been filled with so many other positives! He just started a soccer class that is offered through his preschool and he has been going to another sporty gym type place for the past month or so. He absolutely loves all this as you can imagine! It really is amazing to see him play sports and have so much fun! Just seeing him carefree, playing, and having the best time can mesmerize me. I see what’s going on in front of me and, at the same time, I can’t help but think about what he’s gone through to get to this day. Literally the images and thoughts of the past 4 years flood and take over my mind. And then I wonder, when the day will come that I will find myself just being there, watching, and not being overly emotional. Is that even possible after everything?
Our time off between rounds this summer we have also had the chance to finally travel a little for FUN!! This is another big step for us and we are trying to space it all out so it doesn’t become too much for him. He has a great time know matter where we go (even to NY to visit Sloan) but he misses home and Papi so much, at the same time. Getting to spend time with family and friends in their part of the world has been simply wonderful! So many carefree (as much as they can be) fun filled days and nights have turned into sweet memories for us!
Now, we find ourselves here in September. September! It’s a hard one. We are approaching the 4 year anniversary of his initial diagnosis on the 26th. It’s effortlessly the most reflective time of this journey, for me. It stirs a lot inside of me each year. And while the wounds still feel so fresh – it is amazing to me to think it was 4 whole years ago that this all started. I find myself often lost in a moment of time over the past 4 years. I will literally be mentally going through the experience of a specific memory – a scan – waiting – sleepless nights praying the sunlight sure to come would bring a better day – treatments, chemo infusions and radiation – specific conversations - the feeding tubes – the Broviacs – relapses -his initial diagnosis. This is a big one for me. For some reason, no matter how many times I find myself mentally processing and reprocessing this day and night, I can’t get past it. I know that must sound awful, right? If I haven’t even been able to get past the 1st day how am I even functioning 4 years later? I ask myself this very thing every time. But still, I go back there time and time again. My only explanation is that it, hands down, was the most shocking day of my life.
September is also Childhood Cancer Awareness Month! Yippee everyone, let’s be AWARE for 30 days! I’m sorry guys, but I just have to go there for a minute. Can I just ask how many kids have to get sick and die before pediatric cancer gets the attention that it is screaming for? Aren’t our babies that important? Arent' they the future?What if the one destined to ‘cure cancer’ has already died? Any why? Because of lack of funding and national attention? Ok, bear with me while I hit you with some really real, really disgusting stats because anyone reading Brady’s story is going to be AWARE!
In the US almost 3,000 children do not survive cancer each year.
In one month there are 2x as many deaths from childhood cancer as pediatric AIDS in an entire year.
Pediatric AIDS receives 4x the funding that childhood cancer does.
Nationally childhood cancer is 20x more prevalent than pediatric AIDS.
There are 15 children diagnosed with cancer for every 1 diagnosed with AIDS. The U.S. invests approximately $595,000 for research per pediatric AIDS victim and only $20,000 per pediatric cancer victim.
Over the past 20 years only 2 new drugs have been approved for pediatric use – 2 IN 20!!! What???!!!
Only 3% of the National Cancer Institute (NCI) budget goes toward pediatric cancer research.
In 2003 the NCI’s federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer 7% - meanwhile, ALL 12 major groups of pediatric cancers combined received LESS than 3%!
Currently there are 30-40,000 kids undergoing cancer treatment here in the U.S. alone.
Cancer in kids is often more advanced when diagnosed. 80% of kids diagnosed show that the cancer has spread to other areas when it is detected, while only 20% of adults show this to be true.
I know this is hard to imagine and, for most, hard to think about. But until people stop turning their heads away from the ugliness of childhood cancer, it will never change. It’s happening to children everywhere today and tomorrow. Outsiders have to make the decision to join the cancer world in order to make a change. Pediatric cancers are so very different than adult cancers. They need their own money, research, drugs, and cures.
This has to change! It’s here that I want to share with you all another mom’s blog. Did anyone see Stand Up to Cancer a couple weeks ago? Have you guys heard Taylor Swift’s new song, ‘Ronan’ that she debut on the show? For those who haven’t, PLEASE check it out! The song, for one, is painfully beautiful. The blog behind the song is just as painfully real, raw, and heart wrenching. I have not met Maya but have been reading her blog for over a year after hearing about it. She is a local mom here in Phoenix that lost her beautiful son, Ronan, to cancer last May. Driven by the love she and Ronan share she is going on without him here where he should be with his family. Her blogs are actually letters she writes to Ronan and the rest of the world gets to read.
Even while going through her own tremendous grief she is doing amazing things and, seemingly, starting to move the mountains from in front of childhood cancer. She has managed to gain the attention of so many – one being Taylor Swift herself. She blogged about meeting Taylor when she performed here last year and then recently Taylor called her with the news she wrote a song from Maya’s words. The song has become an instant hit and now people all over the world are talking about Ronan and childhood cancer! This is so absolutely amazing! This is so absolutely painfully sad. Why does it take a dead child to make everyone sit up and pay attention?
As a fellow cancer mom, I am so overwhelmed with emotion for everything Maya is doing and going through. I will never pretend to know or understand what losing a child feels like. But, it’s her (and others I know) daily reality that scares every thread of my being. I am all too aware of the edge we are walking and while I have learned to live in and love each moment with Brady, I constantly live in fear of falling off. I find myself extra sensitive lately. The raw emotion is just beneath the thin lining everyone sees. The happiest times with him can turn into the biggest sob fest. I’ll be so overwhelmingly happy to share simple moments with him and all the sudden I’ll think to myself ‘what if I never got to have this time with him? What if he wasn’t here to experience this? It’s all the normal day to day little things that go along with having a little boy that I can’t imagine living without. The other day I opened the silverware drawer to find a Hot Wheels car! It made my day – and, yes, unless Brady has spotted it, it is still there. Rocks are big for Brady…he just loves them and is always picking them up to bring home or move around. We have many rock piles – different collections in different spaces. What would I do if there weren’t spare rocks in the console of our truck? What would I do without him calling for me? What would I do without his car seat behind me? What would I do if I couldn’t do his laundry? What would I do if I couldn’t take care of him? What would I do without his hugs? What would I do without his love? What would I do without all of him? And just like that I am gone. The emotion is too much.
Purple was Ronan’s favorite color – hence my reason and why it’s okay (in my own crazy head) to use it for this section. I really cannot stress enough how great Maya’s blog is. If you have ever wanted to do something – to help pediatric cancer – this is where you should go! Just Google Rockstar Ronan and you’ll be able to pull up both the blog and foundation sites.
Thank you all for being so patient with me and waiting out my quiet time. What can I say; I am more and more stingy with my time and focusing it solely on Brady. I have started this post time and time again…actually thought about just pasting all the starts together and posting whatever it all was. But that wouldn’t have fit with the rest, in my mind. I hope I have managed to close the gap for everyone, for Brady, who this is ultimately all for. Thanks to everyone that continually checks in on us – to those who continually provide us with so much love and support – to those of you reading this and making the decision to just be more aware. You are all in my heart and could have a piece if Brady didn’t already have it all.
PS~ This has been a work in progress for a couple days now. But I find it difficult to post anything resembling good news right before a clinic appointment. Last week was a BIGGIE…We are approaching the 3 year mark since Brady’s 2nd transplant (October 13). And, if you remember, each year Brady’s body is put through just about everything needed to track possible late effects from previous treatments. We did all the testing in August (between all the normal we were determined to have) and results day was last Wednesday. I knew (well actually, ‘Logical Mom’ knew) going in that nothing was too seriously wrong – they would’ve called. But Cancer Mom was doing her normal thing and by the time I was walking by myself from the parking garage to the clinic building I was a mess and thankful Mike and Brady had already gone in. The closer I got the more knotted my stomach became and weaker my legs got. Every time we go I can’t help but worry if this is another one of ‘those’ days. Is everything going to come crashing down, again, when those labs come back?
It was busy and I had to deal with my own internal physical turmoil a little longer than usual. But, in the end, from start to finish it was a perfectly perfect (or as good as it gets when you are at an oncology clinic, and your son is the actual patient there) visit! For starters, his weight is up – officially! He’s been at 27 lbs. for a month now! That’s up over 2 lbs. where he was stuck for over a year and the most he has ever weighed making his lifelong weight gone 20 lbs. so far! I just have to put it all out there like that – we are absolutely celebrating as his weight/size has been an ongoing issue – it is such a reflection of everything he has and does go through.
Height, on the other hand, doesn’t seem to be different. I am holding out on this, however, until we see his endocrine doctor again and is measured on their specific scale. To be continued mid-January at his next visit there…
The blood work done for the yearly workup all looks amazing! Everything is within normal ranges. This is always good news considering everything his organs and body systems have had to endure while trying to eradicate the leukemia. His heart is showing to be strong and healthy – as are his lungs! This is another huge area of concern due to the oxygen therapy he required 2 years ago. I still don’t sleep well if I can’t first check his O2 stat after he’s asleep. I did manage, however, (with Mike’s encouragement) to leave the monitor at home when we went to Nashville as couple weeks ago. Only 5 nights, it wasn’t too bad – Ya, right! I cursed myself every night with the reality that it is just a small machine that takes up minimal space in the suitcase. I vowed to NEVER leave this security system of mine again!
With that said, ‘Logical Mom’, is saying ‘get over it!!’ and she has the doctors backing her – they decreased his daily inhaler treatment. This is the first time since he started it that they have even talked about going down in this area and I was (okay, still am) so shocked and just gripped with fear.
In addition to this decrease we are also getting ready to go to the final low dose of Interferon in the next week. Again, shock and complete fear. These 2 treatments (the inhaler and Interferon) go hand in hand with Brady. The Interferon has proven over again how effective and responsive it is towards his leukemia. However, the inhaler, and all the issues behind it, wouldn’t be at all if not for the Interferon. Was the damage permanent? No one knows that answer as of today. Are we setting him up for further pulmonary complications? Again, no one knows. Is he doing well today and showing no clinical signs of problems? YES!! Hence the reason for the decrease. If he doesn’t need it or as much as before, then we need to get him to the correct dose or no dose – I know this, believe in this, and repeat it to myself over and over as it is still so scary.
The same thing can be said for the Interferon. We have to get him off at some point and it needs to be at the earliest possible – which, is looking to be around a year from now – if all goes as planned. Every time I push another dose into his little body I pray it is not doing something terrible to him.
We are off and starting another round at Sloan next week. We are excited to be going and so relieved to start treatment again. The time off is always welcome and needed but hard. We sit here and basically nothing therapeutic is going on the entire time between rounds…this is very scary for us. Please keep Brady in your prayers as he begins this 4th round 4 years into his battle for life. We’ll be gone slightly more this time – so he’s going to need all the emotional as well as physical stamina he can get.
I hope this all makes some sense. It’s been a long time coming…too long. I tried my best to include what needed to be here. I’ll be back to update everyone as this next round gets underway. In the meantime, please be happy with the everyday things that YOUR life has to offer YOU. I know I am. XOXOXOXO
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