ONE YEAR LATER...

One year ago today my life was completely turned upside down. At an x-ray appointment to check for constipation our doctor called us with news NO parents wants to hear. Before we had a chance to leave the parking lot we heard the words that would forever change our life.

"Your son has a huge mass growing out of his kidney..." "HUH? Is a mass a tumor" "I am not sure but you need to get to Upland and have another test done right away..."

While at SACH I was still in shock about what the other doctor said... maybe they confused his slide with someone else? Maybe they THOUGHT they saw something and it isn't really there. In the middle of the ultrasound the tech came in and confirmed what our doctor had told us.

"Your son has a huge mass/tumor growing out of his right kidney. Here is the CD you need to take with you to Loma Linda." "HUH!?" "Go home and pack for the Children’s Hospital"

Once we got to Loma Linda we were admitted to the cancer ward… Ryan and I were both confused as to why they hadn’t put us in the normal ICU/PICU units. Once the nurse came in I asked her

“Does he have cancer?”

She obviously couldn’t say yes or no, but if it was a tumor then probably yes. That night we did our first sedation CT-scan and saw the results… let’s just say Ryan and I were speechless! The tumor was huge pushing all of his organs over and causing him to have trouble breathing. We were given several options, the top 2 being A- we start chemo and shrink the tumor to a smaller size then remove it, then continue chemo OR B- get the tumor out and start chemo. Well, considering Ryan and I didn’t go to medical school we asked a million questions and thank GOD for our surgeon and his confidence. He told us if it was his kid he would take it out and he was 100% positive he would get it out without damaging any other important organs/veins/arteries etc. So we went in on a Tuesday (June 14^th) and Dominick had his operation Friday (June 17^th.) The days in between were filled with test and more test to make sure the tumor was not attached to anything but the kidney. On June 17^th Dominick went in to surgery around 10:30am and we got to see him around 7:30pm. That was probably the worst and longest day of my life. When we got the text that we could go see him the surgeon came down to get us and showed us pictures of the tumor. It was much larger than they had imagined. It was 6 inches and 2.5lbs… in a little 5 month old body! It was 10% of his body weight! They had to remove the right kidney but thankfully everything else was not attached. From that point on we waited on the results. They were thinking it was a stage 2 Wilms Tumor… when the reports came back it was a little worse. It was a stage 3 Wims Tumor. From there we got our roadmap for his recovery process. 6 months of Chemotherapy was in this little guys future. Before starting chemo, they do a standard test on the kids to make sure their body can handle it, and one test came back that his heart was not functioning well enough to start chemo. We were sent to the Cardiac ICU to start receiving medicine there and started seeing a cardiologist. Because the tumor was so large, it had been pushing on his heart, causing his heart to be enlarged and not pump as well as it should at 5 months old. His nephrologists had him already on blood pressure medicine so that was all we could do. His heart was considered a “secondary problem” which I was told would heal itself once the “primary problem” (tumor) was taken care of. Once his heart was a little stronger he was able to start chemo and was sent home right before the 4^th of July. He starting losing his hair the beginning of August so Ryan and I made up our minds that we would shave it. We only shaved it that once and it never came back until recently. It was hard, but what was harder was seeing him loose his eye browns and eye lashes. We got use to seeing him like this though, and when he started to get hair, eye lashes, and eye brows we thought he looked silly! Now looking back at his pictures it makes me sad because he did look like a sick kid.

The whole 3 weeks were filled with MANY tears from Ryan and I, our family and our friends. Nobody could believe this was happening. NOBODY! Ryan and I would be fine and able to talk to everyone, then would have massive breakdowns when it was just us, looking at our baby having to go through so much. We were sent to classes on how to live with a Cancer Kid and all the things we needed to know. I was also sent to a class to learn how to give him shots at home and how to take his blood pressure. We still talk about these 3 weeks and what a nightmare it was… it was almost too horrible to be true. Many marriages are ruined in the hospital because of the stress and emotional burden it causes on a couple to have a ‘special needs’ child. I am so glad that was not our case. Ryan and I grew closer because of this and couldn’t be happier with our support system that stood behind us through everything. Ryan had friends that lived nearby that opened their home to us to shower and sleep in. We had friends that would bring us lunch and come visit, and we also had more love on FB than we could have ever imagined. I don’t know what we would have done without everyone’s support and love for Ryan and I and mostly Dominick.

People say “I don’t know how you guys did it” and “Dominick is a lucky kid to have such amazing parents” well I say “we are the lucky ones.”

Dominick has blessed our lives in more ways than I can express. I think his courage and fight has inspired many others, including Ryan and I. He has never lost his smile and charm and continues to be such a happy baby. I don’t know many babies that will hug their doctors and give high-fives to nurses who just poked him with a needle. I don’t know many babies that will run to you when you yell “medicine time” in the AM and PM and open their mouth as though it is a treat. I also don’t know many little ones that would look as cute as he did with no hair~

Even though June 14^th was such a terrible day, filled with more emotions that I thought I had, it was a day that changed mine and Ryan’s life. However, today I look at my little (big) kid and you would never be able to tell what he has been through. He has finally caught up to his age group and is running and climbing like a champ. His once “chicks dig scars” scar is also healing and fading away. He is one amazing kid and we can’t imagine our life without him!

One last thing then I swear I am done… I just want to say thank you gain to everyone who has just showered us in love this past year. Whether it was visiting us, sending us a sweet message on FB, sending a quote to go in my jar I read constantly etc. It means more to Ryan and I than I could ever write down. Thanks for always keeping us on your mind and loving our little one so much!

Here are a few pictures from this past year

 (June 14th at Loma Linda, June 17th the day of his surgery, July 2nd his first chemo, and July 3rd coming home!
at the chemo clinic, our baby at home, starting to get hair, and our normal looking kid!)

an update... finally!!!

So let me say it again LOUD AND CLEAR... "I OFFICIALLY SUCK AT BEING A BLOGGER!!!" ha ha ha I use to be able to use the computer in front of my little guy, but for the last few months he is a crazy boy terror and if I were to try to blog with him next to me my blogs might look a lot like this... aksdjfgaklsudflsebf;aiusydfgiuabshdgkjasydfiuasdfiuahskjdl;fh 

SOOOO this has led me to not be a good blog host! lol!

 Today I find myself thinking about all the support we had and how I suck at keeping everyone updated on Dominick's progress! So here it goes, as far as cancer- he is done with Chemo hopefully for good! He has had 2 CT-Scans come back good and will (I think) just get an ultrasound done every 6 or so months for the next few years. When we "officially" get to this part he will get his line (port) taken out of his chest because it is more of a worry to have it in if it is not being used vs just taking it out. So at this point we are at the "yellow light" (one of the nurses called it a yellow light and I thought it was cute!)  He is not under the title "cancer free" but is not showing any signs of "cancer" in his test! His recovery is 3 years so at age 4 he will get his title "cancer free!" Ryan and I just hope in these 3 years he continues to do well on his tests... we don't want to be negative but there is a reason there is a 3 year "yellow light" period. Until we get the official CANCER FREE words coming out of the doctors mouth we will always have that concern in us! As far as his kidney/heart they are doing ok. His kidney should measure a little larger than it is measuring but she is not to concerned. It needs to be larger than normal but not too large. We do urine test every 6 months or so and get kidney measurements when the oncologist orders his test (every 6 months.) His heart is now being watched by his nephrologist who is doing an test on it once a heart until she is 100% confident it is good to go! He is now only on 2 meds in the AM and 2 in the PM. He is actually amazing at taking them. I just say "medicine time" and he walks over, opens his mouth, and I pour them in! (what a kid right!?) 

Since ending Chemo earlier this year we have seen eye brows, eye lashes and hair! It is amazing to see and we all just talk about his hair like it is the best thing ever!!! It has come back way lighter than it was before, but we all just love the fact he has hair blond or black! The only thing now is that when I see pictures of him with NO hair, eye lashes, or eye brows, it makes my stomach turn. I don't think I (or anyone) realized how "sick" he looked. At the time, that was the way Dominick looked. But now, looking back, he 100% looked like he had cancer. I know that sounds silly because I looked at him everyday but the comparison is what makes it more real I think! It just seems like a crazy horrible dream at this point... almost unreal! When I tell the story it is almost like I am telling someone else story. Anyways, he is the happiest little boy in the world! Here are some pictures of him with hair and with his bestie Benny!!!

As far as baby #2... We are only 7 weeks away from meeting our new bundle of joy! We are not finding out the sex and just want a healthy baby! (I know people say that but we really mean it! ha ha ha) I have started going every other week which makes it more real!!! We are excited for our family to grow and I know Dominick is going to be an amazing big brother! Lately I just want to spend as much time with Dominick as I can because I know these are the last few weeks he will be my only love bug and only child! We took some family pictures earlier this week and I will post some when I get them!

Baby #2 is still little in this picture but he/she is there!

Clearly I will NOT be making a living being a blogger anytime soon :)

A lot has happened since Halloween… DUH… but I don’t have time at this very minute to do a long update because we are back in the hospital L Baby Dominick has been having bad diarrhea since last Sunday and by the time Thursday rolled around I noticed he wasn’t peeing, which is NO GOOD when you only have 1 kidney… well I guess it is NO GOOD when you have 2 kidneys as well. So we went in to the clinic and after a full day of fluids he still was going #2 quit frequently and had still not gone pee. So, the inevitable happened and we were admitted to Loma Linda Thursday night. They were concerned for his 1 kidney because  (bear with me my nurse friends while I probably make NO sense out of what I was told) I guess when you get sick some of your not as important organs can shut down to put all of your energy in to the important ones like your heart, brain etc. So they were certain this is what happened but they wanted to monitor him to make sure his kidney started to work again. It is an understatement to say I was freaking out at the thought of his kidney not working!!! So you can imagine the sight of the first pee Friday was the most excited I will probably ever be to see pee!!!

Yesterday (Friday) he started to pee a lot and was pumped with lots of fluid to help with his dehydration caused by the diarrhea. We thought this morning was a for sure “go home” day since he had not gone #2 since yesterday morning-ish, but sure enough I was woken up at 3:45AM to the sound of Mr. Dominick going to the bathroom :/ By the time the doctor did his rounds he had already gone 4 times… keep in mind rounds are done usually around 11AM! This now has been going on for a week and the most frustrating part is that all of the tests they have run are coming back negative. Every time he goes they are running more test, but I guess as far as infection and bacteria test go there are millions (slight exaggeration) so they are narrowing them down from common to least common as far as what test to do. We are keeping our fingers crossed we get to go home Monday and that his diarrhea comes to a stop within the next 12 hours or so. I can’t imagine how he must be feeling after going so many times a day for a week now!

FUN NEWS- Today we utilized the playroom here on the oncology ward! Ryan was so excited he went straight to the tools and played there for what felt like all day. He loves tool sets and Ryan cannot wait for the day he starts to help him with ”blue” work around the house. Maybe their 1^st project will be to build me a really nice shoe rack to organize my shoes J ALSO,  Baby Dominick has learned how to “give kisses” and loves nothing more than to kiss dada and all his stuffed animals… little did we know he is kind of obsessed with himself as well! I took this video today and thought I would share J I am kind of bias but he is pretty much the cutest thing in the world!!!

Hope you enjoy and hope everyone has a great weekend ;)