Monday, July 22, 2013

WATCH OUT EVERYBODY, I'm writing another blog and it hasn't been a year :) 

OK, getting serious, today I had a moment of reflexion as Dominick and I were at the oncologist. Today, as we sat in a PACKED waiting room, I was looking around at all the children that were waiting to go back. Lots of them had lost their hair, some looked like Dominick (normal) making me wonder if they were "new" or just there for a check-up. The kids that always make the trip tough are the sick ones. Of course my heart breaks looking at the kids that are sick, but now as a mom, I can't help but look at the mothers of these innocent children and my heart breaks just as much (if not more.) One mom was holding a throw-up bucket for her daughter and another mom was holding her upset baby. I offered to help the mom with the barf bucket and grabbed a nurse who could assist her better than I could. There is nothing worse than seeing a mom with a hurting child. You can see the pain in the mom's eyes and you know any mom would trade places in a heart beat if it was doable. Sitting in this room made me hug Dominick a little tighter as we were waiting. It made me realize I am lucky that he is doing so well, but above all else it made me remember those horrible feelings. I hated seeing my child so sick and knowing there was NOTHING I could do to fix it. So many times I wished I could have just taken all of his pain away and if not that at least taken some of his pain away. It is the worse to just sit back and watch. I don't know why, but today was just a little emotional for me. Maybe the little girl that just died (the Cover Girl) made it more real of what he went through? Or throwing an amazing fun first birthday for my healthy baby made me realize Dominick didn't have the same first birthday? Who knows, maybe I will always have sudden burst of sadness.

Time for some good news people!!! My child is a year and a half cancer free!!! What does this mean? Welp, he needs to be cancer free for 5 years to be "cured" so we are 1 1/2 years down :) He is having all of his usual test done again next month (every 3 months) and I am positive they will keep coming back great :) 

We also had a BIG KID moment today... that took me by complete shock!!! When we got called back to do his blood pressure and all that fun stuff he told me he didn't want me to sit with him!!! (He usually sits in my lap) He said "MOM, NO SIT!!!" I said "You don't want to sit on my lap?" He said "NO MOM" and pointed for me to wait over on the other side of the room!!! WHAT!?!?!? So, there I stood and just watched from a distant! When did he grow up?

(of course I got a picture, what kind of mother would I be if I didn't snap a quick picture of this!!!) 
 AND since he was so good with his labs and such a good boy for the nurses we went and saw dada on the way home :) He loved playing "work" and reminded Ryan many times he was "working" if Ryan tried talking to him :)


After we got home from seeing Ryan we got ready and Kendall went to her one year appointment :) She did really good and hardly cried when she got her shots! 


Today was overall a great day with my little love bugs...
Now off to make dinner :)

Friday, June 14, 2013

Its that time... time for a sappy post!!!


Two years ago this was my Facebook status:

"On our way to Loma Linda to admit Dominick. They are running test on a tumor we found in his kidney. He will more than likely have surgery tonight or tomorrow. Whoever you pray to, please send one up for our little man. Hug your loved ones extra tight and don't sweat the small stuff in life... love to you all!"

I look at this post and think "I clearly had no idea what was going on and was not ready for what happened after!" This person, who wrote this, was not the person who was prepared for what was about to happen. This person drove to Loma Linda thinking they would remove a cyst from her sons stomach and they would go home in a few days... I look at this and my heart just stops beating thinking of what actually followed this "vague" post.

For some June is a time summer begins. June means longer daylight, beaches, pools, schools out, vacations etc. For me, June takes me back to this horrible day in my life. The beginning of June puts a knot in my stomach, remembering what June represented 2 short years ago. June 14th to be exact is an emotional day for me. June 14th was the day my life changed forever. June 14th was the day I heard the words "We think your baby has cancer..." 

No parent should ever have to hear these heart wrenching, stomach dropping words. I remember just sitting there not really understanding what people were saying. It was almost like a huge blur when doctors or nurses were talking to me. Every morning waking up thinking I was stuck in a horrible nightmare. I really had trouble grasping this new reality of mine. After so many tears you really do hit a spot of "My kids has cancer" without a tear or look of sadness on your face. Some people don't understand this, but once you just take your reality for what it is, you get over it. Yup, my kid has cancer and that's that. 

I became so numb to my reality, chemo every week and frequent hospital stays, averaging around 5 days every 4-5 weeks, I just got "use to it." Friends and family knew the food we liked for all three meals and my amazing mom would hear the call "they are admitting Dominick again" and she knew what bags and what clothes to throw together. I started becoming friends with the nurses and would look forward to catching up with them and hearing all their gossip. A few nurses would even bring me breakfast on their way in if they knew I wouldn't have any visitors until night :) I started getting to know my fellow cancer kid mamas and became comfortable walking around the hospital in sweats and no bra (and would smile at the cute new moms that would do their hair and make-up everyday!) Us moms would get coffee for one another and take turns making meal runs. It almost became like a sorority camp... and I say camp because all parents used ONE bathroom!!! I learned to make a fold-up seat bed pretty comfortable, and got use to the wires that were attached to my child. Looking back I honestly don't know how I did it. But I guess when it's your baby, parents learn to deal with any and every situation that comes their way.  

Here we are 2 years later... Ryan and I speak of this event a lot. We always can't believe it happened to us and both feel like it was a horrible dream. We both feel extremely blessed Dominick has remained cancer-free since his last chemo in Jan 2012. All of his test are showing no signs of anything which is still amazing to hear and will never get old :) His kidney is hanging in there. It has had a few hiccups in its short road, but nothing medicine hasn't been able to fix. As of now, we see Oncology every 3 months, Nephrology every 3-6 months (depending on test results), we do ECHOs once a year, chest x-rays, ultrasounds and blood work every 3 months and he is still on some medicine to control blood pressure and help with his kidney function. 

In the privacy of my home (and car) I still sometimes get emotional when I think of what my baby boy has been through. I still have a little part in my soul that won't rest until I hear that he is "cured" which means there is practically no way it will come back. I will hopefully hear the words shortly after he turns 6. Until then, I still have a tiny lump in my throat that is always prepared for the worse. I get scared for his future and his one kidney. I know it is common to have one kidney, but as a mom it is just another thing to worry about. I pray it stays strong and can take on the work of 2 kidneys, but only time will help heel this worry wart mama :)

Thanks again to all of our amazing friends and family for the love and support over the last 2 years. It means more than anyone will ever know... 

XOXO



Tuesday, June 11, 2013

Guess who's back?!

MMMMEEEEEEEEEEE!!!!!!!

Man oh Man I suck at being a "blogger" but what can I say, I didn't have a computer, then I had a second baby, then I just never really felt like it (and if I did have an urge to vent, I did so in some private groups I belong to on Facebook!) 

Speaking of, we had a second bambino!!!
Kendall Rylie 
Born July 18th (of last year!)
When they said "Its a girl" we were thrilled!!! (and scared all at the same time)



Now we are a fambam of 4!!!!!!!! Things have changed a little, and Dominick is now use to his big brother role, but it was an adjustment to say the least :)





So here we are a year after my last post... Kendall was born, Dominick had surgery (port removed=YAY!), we moved, spent our first Christmas as a family of 4 in our own home, I personally have made some new amazing mommy friends, lots of my friends have become first time moms, and best of all
RYAN WAS PROMOTED AT WORK!!! 
Ryan is now in his dream role that he has been working hard towards since I met him in '08- I am so proud of him and what he has accomplished in his profession. As far as me, I am still "working inside the home" ha ha ha (I heard someone say that once and it made Ryan and myself laugh!) But hey, keeping stuff clean, teaching a toddler, dealing with a baby is tough work... so is watching housewives and other reality TV while the kids sleep :) I am blessed beyond words and can never thank Ryan enough for allowing me to raise these kiddos!!! (even though somedays are a little much to handle!) 

I plan on being better at these blog post, that is my goal!!! Wish me luck!!!

Thursday, June 14, 2012

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 14th) and Dominick had his operation Friday (June 17th.) 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 17th 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 4th 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 14th 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!)


Friday, June 1, 2012

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!

Saturday, January 28, 2012

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 1st 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 ;)

Saturday, November 19, 2011

WOW it has been forever!

My last post was kind of depressing so I promise to keep this one happy- Since my last post lots has happened. My little guy had his first Halloween!!! We went to the pumpkin patch, a few parties and spent Halloween day in the chemo clinic getting chemo… some might say “how sad” but the kids who had a short chemo were crying when they had to leave! All the nurses were dressed up and they had SOOO much candy for the kids- Even the kids who didn’t need chemo that day came by to trick-or-treat :)  Here are some pictures from the pumpkin patch and party and then at the clinic.



HOWEVER, with happy news must come some frustrating news… while in his 5 day chemo he got sick before day #3 of chemo. We took our little guy home Tuesday night and woke up around 3:30 to find him with a fever :/ it was 101 and we are not allowed to give him medicine at home to stop a fever and have always been told to call if he spikes a fever at home. I called and they told us to come in. But like the “broken car” you take in, this guy had NO fever when we got there- However, since he had a fever they have to keep him for 24 hours. At first Ryan and I were upset that we even took him, and hated that he was back in the hospital for no reason… UNTIL he spiked a fever of 102.5! They said they wanted to let it go to see if it would get higher. Well, it didn’t get higher but dropped back to the low 100. Then a few hours later shot up to 104.9! I was a mess!!! My poor little baby was shaking out of control and they call in many RNs and NPs to help with the situation. I have not been that scared since he went in to surgery- They gave him so much medicine, did test, and put him in isolation. His doctor said he had to go 24 hours with NO fever before they could finish out the rest of his chemo (we had 3 days left!) He had no fever Thursday-Friday so they were able to do chemo Friday, Saturday and Sunday night and we came home Monday. This was a scary hiccup in the road, but like the doctors said there was nothing Ryan or I could have done to prevent this from happening. It was bound to happen and the fact he hasn’t been back in so long was a miracle- So we are back on track for chemo this Monday November 21- While on the topic, just want to say for the millionth time thank you to everyone for the sweet comments, texts, messages etc. They really do help when we are going through a difficult time- I didn't take as many pictures as I usually do but I had this one I thought I would share, this guy is seriously so happy!