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!

"Tears are not a sign of weakness. They're a sign that you've been strong for too long"

Just realized I have not "blogged" since my birthday :/ (I know!!!) My birthday weekend was a relaxing one. The day of my birthday I went to a 2nd bday, went to church, gave blood, and went to see 50/50. The next day (Sunday) I stayed in PJ's until I had to get ready for dinner at 4 (yes kind of embarrassing but everyone is entitled to a few good PJ days!) I have to say the movie hit home!!! I don't know if it was the best "date-night" movie, but at least he lived so it wasn't as sad as it could have been. (sorry if I just gave away the ending, I do that a lot! Whoops!) It put a funny spin on a serious condition. The part that got my tears followin' was when they rolled him in to surgery!!!!!!!!! That moment, those few seconds, was the WORST moment so far in my life- Having your child seriously ripped away from you, thinking "this could be the last time I hold him, kiss him etc." is HORRIBLE! Watching the guy and mom in the movie before surgery made those crazy emotions come flying back :/ But, I have to say it was a great movie and everyone should go see it :)

Then came Monday....... you know, regular kidney check-up for the baby. Usually the heart and kidney docs say the same thing. "everything is looking good, we will keep an eye on it." So naturally I am thinking "no big deal." WRONG WRONG WRONG! OK, well nothing horrible is wrong, I think this doctor just brought me back to reality. Lately I have been so excited we are on our FINAL stretch with Chemo and the light at the end of this twisted tunnel is getting bright and more clear- I always say "we are almost done with this whole thing!" I think I completely forgot about him only having 1 kidney. I think everyone forgets- Everyone always says "when is chemo done, when are you guys going to be done with everything?" Well the answer to that is NEVER! Him having 1 kidney is and isn't a big deal. He has to be closely followed by the kidney Dr and have regular test done to make sure the kidney is bigger than normal (to pump for 2) but not too big (over working itself)- This is also a crucial time to see if it will do its job while he grows so fast the next few years. So my obvious assumption is we are in the clear after that- NOPE, the next crucial phase will be when he goes through puberty- PUBERTY! Do you know how far away that is? I know I am so blessed that this is the only thing I have to worry about, it just puts a damper in your day/week when you didn't really think about it- 

So, Ryan and I always said we will have baby #2 when Dominick is healthy and I can have enough emotional energy to be pregnant. Well, going to this appointment made me think baby #2 should not even be a thought until D is 18! :/ OK, so obviously I am not going to have another baby in 18 years, but it was just something else we never thought about- I guess with this kind of situation, you just live your life and what happens will happen, and with that comes the possibility of being pregnant while living in a hospital and/or dragging your newborn to all kinds of doctors appointments for his/her big brother- We do say it would be hard, but who's life is easy?

OK, now that I feel emotionally exhausted from just writing this, let me have my vent... or this is your time to stop reading :) This past week I have just felt so depressed- I think I have this stress thing figured out, when you are in a stressful situation you go in survival mode- There are seriously weeks I don't cry or shed a tear. I just know everything will be fine and he is fine and nothing is wrong and we are a normal family, taking your kid to chemo is normal, medicine all the time are normal etc. Then all of the sudden, the reality smack hits ya! NO SARAH, this much medicine is not normal, your baby takes more medicine than your father with heart problems, your baby goes to CHEMO, ... chemotherapy for cancer, CHEMO like the kind you see on movies and older people get, your baby has no hair because the poison in his body made it fall out, carrying a thermometer in your diaper bag and checking his temp when he feels a little hot is not normal, venturing to another city and wondering if something happens where is the nearest hospital is not normal etc. These thoughts just fill my head so fast I have moments of complete breakdown! Everyone thinks I am fine, which most of the time I am, but I am human and I am a mother, so of course I have horrible panic attacks and cry out of nowhere! Just for some reason reality hit hard these last few weeks. With these attacks of reality comes the guilt all over again. I look at pictures when he was 5ish months and seriously think "what kind of mother thinks he looks normal? What kind of horrible mom doesn't realize he looks so uncomfortable? What kind of mother thinks it is OK to look so swollen?" These thoughts go on and on. Sometimes I just think it is unfair to him that I" If there is anything I can share now is as a mother, if you have that gut feeling that something is wrong, that you know it is but because your not a doctor you don't fight for what you truly believe, what I learned is you do fight for your kid. You are the voice for your child- So, all you moms, dads, whoever, if you think it you are probably right!

Anyways, I know this whole thing is not my fault, it is just hard sometimes to still believe it- OK, enough of the crying for me... just thought I would vent and let the world know I am not as strong as most of you think- I do have many weak moments and these past few weeks have been tough on me- Thank you all for the continuous support and love through everything~

One of my favorite pictures :)

reflection of my life thus far...

So today I have done a lot of reflecting of my life since tomorrow is my birthday. I thought about how fast time has FLOWN by and all that I have done. Ten years ago I was about to turn the BIG “18” and threatened my mom “if you don’t take me to get my belly button pierced I can legally go tomorrow.” My mom took me because she wanted to sign for something for the last time! I remember the day like it was yesterday! We went and Brenna met us after she got off work at “The Deli.” (side note, that place is amazing!) Like everyone else that turns 18, you think you know everything and that you have life figured out! Well Blog flowerers this could not be more UN-true! You are still a baby at 18! Anyways, I turned 18 at the beginning of my senior year. No clubbing for me because I was one of the first ones so nothing really changed in my life- I LOVED my senior year and was sad to leave Etiwanda. I remember thinking when I left “how is Etiwanda going to function without me and my friends?” ha ha ha Senior year was filled with boy drama, parties, girl drama, parties, and sometimes (mom look away) forging my mom’s signature for an off campus pass… don’t judge I still managed to graduate people! I always think “how did everyone always know about house parties before myspace and facebook?” O ya, PAGERS! Ha ha ha I can proudly say MY generation invented the text messaging via pager code 43770!!!!! (ok so the number text has changed in the past 10 years but if you were legit you will figure it out!) I didn’t take it all in at the time, but that was one of the best times of my life-

To sum up the next 9 years after, I went to college, lived with friends, joined AXO, graduated college, got a teaching credential etc. In between all of those was a DAMN good time! Then I met a certain guy named Ryan Gonzales. He changed my life forever! NOTHING could have prepared me for who I was going to meet on my “man-hunt” that night- He was such an amazing person from the second we met- He is so thoughtful and showed me how I was suppose to be treated. You could say we were attached at the hip since we met and got engaged 9 months later! “and between me and you, him owning a boat might have helped seal the deal!” ha ha ha just kidding… kinda… J  I feel in love, got married a year and a half later, had a baby a year and a half after that and could not be more blessed with my life-  I remember thinking when I turned 18, and again when I graduated HS, about the next 10 years and what my life would be like. It is not the image I imagined but whose is. I didn’t think I would marry after such a short time of knowing someone and I definitely didn’t think I would meet him in a bar, I didn’t think I wouldn’t have an amazing job by now, I thought I would have more kids by now, and I for sure NEVER thought I would be facing the challenges of being a parent of a child with cancer! HOWEVER, I WOULD NOT CHANGE ANYTHING IN MY LIFE FOR ANYTHING IN THIS WORLD… Ok let’s be honest it would be nice to go back and try a little harder and get better grades (yes I said it mom & dad!) J  Let me just say this, I am blessed not to have a major career right now (clearly), I am beyond blessed Ryan wanted to marry me and even more blessed for my precious baby boy-Ryan made my life complete and the baby was a bonus. They are truly the 2 loves of my life and safe to say the best 2 things to enter my life these past 10 years- Many people say to me “Dominick is so lucky and blessed to have parents like you.” Ryan will say “Dominick is so lucky to have you with him all day every day.”  To both of those I say I am the lucky one. I am so lucky he is MY son, I am so lucky I am able to stay home with him and I think of myself as the lucky one. This little baby has taught me to love life and not take it for granted. He has taught me to love stronger, hug tighter, and to really live life to the fullest.

 I think now at 18 +10 (my computer just can’t write that # :/)  I have figured out the secret to life. It is all about LOVE! I am beyond blessed for my family and I think the older you get, the more you realize how much they mean to you-  I really do have an amazing family! And not to mention how fun it is to have Benny and Dominick grow up together J I also have amazing friends I can always count on. I met new ones, lost good ones, and held on to the old ones- As sad as losing a best friend can be, finding who the true ones are is so rewarding- And above all else, I have the best husband and son anyone could ask for! Ryan is my rock and keeps me grounded and both of my boys happiness gives me a reason to smile everyday-

To wrap it up, I can’t believe how amazing these past ten years have been. Even though I miss the HELL out of High School and the fun times of college , living with friends and in the sorority house ( and to be honest doing my hair and make-up every day), I wouldn’t trade my ‘wearing PJs all day, stay at home date nights with the hubs’ for anything. Ryan and I have been on a crazy ride the past 3 years since we met and I can’t imagine having to do any of it without him. He is my rock and my better half. If history repeats itself our life will only get crazier… but I wouldn’t have it any other way… if the next 10 is as good as this last 10 I say “BRING ON THE NEXT TEN YEARS!!!”

Here are some random pictures from the last ten years J enjoy!

my life in HS

Graduated with these people...

Turned 21 with Brenny :)

Lived with her...

then her... 

 Joined with them...

then lived here... (sorry its blurry!)

did some crazy things and went to some crazy parties

 fell in love with this guy

married him...

 still having fun with these girls

Had a baby

My new "Friday/Saturday" night plans :)

 My world :)

This week...

So, as many of you know and some of your don't, this week we did a 5 day chemotherapy through the clinic. What does this mean most of you say? Let me break it down :) This certain chemo is given over 5 days and anywhere from 6-8 hours. Last time we had a 5 day in a row chemotherapy we went to the hospital because I didn't know if I could do it in the clinic. What's a clinic? The clinic is where Dominick sees the doctor every week and gets his weekly fast chemo. In the clinic they have rooms for kids that get other things done and they have a transfusion room. It looks just like the one my grandma sat it. It is a huge room with big chairs that you sit in with your machine next to you. They have a playroom, the wii, games, TV etc, the only thing with Dominick is he is to young to use any of the "fun" things at chemo. This is what it looks like...

We started Monday with lots of anxiety but it wasn't as bad as we thought. There are so many wonderful families that come in and out, and the staff is amazing. It is funny, because you can relate to all of these parents, and they kind of become your friends. All the kids start to get to know each other and I must say all the little girls love them some Dominick :) There was one little girl crying one day before she had to get accessed and all she wanted was to "Say hi to baby Dominick first." So, sure enough, the nurse let her come over and say hi, then she let them stick her with the needle! It was pretty cute- So our typical day went like this, Ryan came with me bright and early and my mom would come around 12:30, bring me lunch, and stay with us until we were done. We would leave anywhere from 2-3:30. HOWEVER, on Friday we didn't leave until 4:45 because little D needed a blood transfusion and those take 3 hours! Not only does it take forever, but blood scares me. I had to sign forms that would make any normal mother a panicked wreck! It is one of those things where you know they need it, but it is still hard to sign and go through with it... kind of how this whole process has been! Friday I would have to say my mom gets the gold star :) She sat with me ALL day. She had planned on leaving but when she saw I was going to loose my mind with the blood situation she said she would stay. What an amazing mother I have! Even though the situation was not normal, I still took some pictures because this is still his baby memories and what will be in his baby book :) Here are a few!

Just my FamBam hanging out in a chemo clinic... totally normal right?

After the crazy week, and the even harder day I came home to NO HUBBY!!! He said he had to go back to work :( Then he pulled up in this pretty thang...

 

We have been talking about trading in 2, out of the 3, cars we own and getting a new (new to us) car that would carry a baby (and baby #2 when we have one) and could also tow a boat. Right now we have a car JUST for the baby and one JUST for the boat. Yes, this sounds pretty simple, but we still just have not done it. Behind my back, this guy had been on Carmax's web everyday and calling around to find deals. Every time he found one and would nonchalantly run it by me, the car would be gone! So he found one, liked it, and made it my early birthday present! I was only asking for a necklace, but it is safe to say the car is better than any necklace :) This was an amazing ending to a hard week!

Does this look like a baby in CHEMO???

My happy little buddy today.... pretty much laughing for no reason :) Next week we start another round of 5 day/ 6 hour a day chemo :(  I am going to try going to the clinic where we get his other chemo treatments, because this way ryan can still see us with his work. It is a hard decision, but I am going to try and tough it out for Ryan- So hopefully he stays crazy and happy for mama and dada- Anyways, here is my little CHEMO WARRIOR :)

seriously how cute is this guy!!!!!!

This weekend...

This past weekend was so much fun! On Saturday we went to a birthday party, which I LOVE birthdays, and it was one of the best decorated ones I have been too- Mama Mallory was such a good host... pizza, beer, and cake-pops... umm, hello that always equals a good time :) She also had the BEST "goody bags" for the kiddos, meaning they were so age appropriate. Dominick's bag (because I don't know if they were different) had bubbles, a baby book, and best of all baby food- I mean, seriously perfect bag for a 8month old...... and not to mention the bag itself is now one of Dominick's toys, don't know if that was done on purpose, but it is an adorable bag!

I didn't take any pictures :( but here is the lady-bug bag, with each kids name on front!

Then later that night, Bethy, Folkert and Bennys came out! We all decided to jump in the pool. Since Dominick hadn’t had Chemotherapy for 2 weeks, he was able to get in the pool, and LOVED IT!!!! It was so fun to see how much he loves the water. I know he LOVED the bath, but this took it to a WHOLE new level. He is my little swimmer for sure! Also, since he hadn’t had Chemotherapy in so long we decided to do “Bathy Time” with the boys… SOOOOO CUTE! I can’t wait until they are able to play with each other in the tub-  We ended the night with amazing burgers and hot dogs courtesy of my husband’s remarkable BBQing skills- YUM-O!

POOL TIME- 1st fam bam picture in the pool and then one of the boys!
"Bathy Time" then play time for the cousins

Then came Sunday... Let me just say this… Ryan and I were, and still are, overwhelmed with how many people came out. We knew it would be a little crowded but O MY GOSH we had no idea that many people would come. It was incredible to see so many faces; family from all over CA, old friends, new friends, FB friends etc J We can’t say thank you enough for everyone spending their Sunday with us. Just when you think the world is a crazy place, you are quickly reminded there are still many good people out there. I was amazed with how generous people were, and on top of it people who didn’t even know us but came because they heard. When I turned around, and would see a little gold bracelet on so many people’s wrist, it would seriously take my breath away. I think sometimes I forget this whole ordeal is happening to me, but when I sit down and think about it, it is scary the road we have ahead, but then I remember all the people that are behind us to help us with anything we may need and it eases my anxiety and nerves. Thanks again for all the support and love, thanks for the texts, emails, facebook messages, cards etc. None of that will ever get old to my little family and I can’t express how much the kind words lift our spirits when we have our down days. Thanks again seriously over and over to everyone who came………….. and a special shout out thank you to my parents, Ryan’s mom, Robert and Larry, the whole Abriel Family, and everyone who donated something for us to use Sunday. Everything got used and many people left with amazing gifts-  

"tougher than I look" Our little hero :)



Us before... and CLEARLY us after!

Such a GOOD Day!

Today so many amazing things went well for Dominick. We were in the car so much today and not a peep from him. I think he is starting to like his new big boy car seat (thank goodness because the screaming every time we get in the car was getting a little old! :) Then we had him on the floor and FINALLY he is starting to go back and forth on his right side. Since his operation (on his right side) he has only rolled to the left... but not today friends, he is going both ways, front to back and back to front! For those of you that don't have kids I know this sounds super LAME, but it is really exciting I swear! Then for dinner my battle with baby food continued... until he actually ate some! I battle my child every morning and night, but since they say it is mostly bottle still, I don't bug him too much because I feel like I bug him enough trying to give him his meds! I simply insist on one small bite in the morning and one at night. This is my theory with food: I just keep offering, letting it be known it is not just going to leave, and my plan is hopefully he will just come around to liking it. And by the grace of the baby food god he actually had more than he has ever had :) Another amazing thing is today he didn't spit out ANY of his medicine! I think he is starting to accept the fact that no matter how much he throws himself around, I have back-up to help me, and I will win. (hopefully this is a lesson he learns now and NEVER forgets! ha ha ha) lastly he is sound asleep while I wait up for Ryan to get home. Maybe with such an amazing day we will all get a good nights sleep..... HA HA HA wishful thinking people!!!

In his cute new hat (from auntie Amanda), Dominicks 1st sucker at the doctors,
1st time in his big boy car set, and Dominicks favorite toy (don't mind the boxes, it helps him run around!)

just for fun

I always post about the baby updates and ever thought there is nothing wrong with that, today thanks to Nicole and her CONSTANT updates and fun thoughts I thought I would do a fun blog entry-

So today is about……. Ummm, today J My hubby and brother have been working on a BBQ for the back of my parents house. It is HUGE and I can’t wait to use it. Hopefully it will be done by Labor day and we will break it in and BBQ some meat and poor some beer. Ooo, sorry I said BBQ I meant an outside bar! This thing is HUGE with a 3 handle tap. It will be amazing when and if it is ever done J We also went to home depot and tried picking out tile. Home depot gives me anxiety and it is so expensive everything I like cost so much that it is pointless for me to be involved in any decision making for house hold items. HOWEVER, even though it is not my favorite place, I went with the baby and we hung out while the rest of the family discussed “tile.”  The longer the baby and I did laps, the more I started to enjoy the store. The only problem is I am an impulse shopper and find things I “can’t live without!” I feel like if I had a lot of money I would re-do my house all the time! How do you make a decision on tile! Or paint? It was like picking baby names all over again… so walking away on laps the baby and I went J

When we got home we had lunch and someone was sooooo fussy! Yet, Ryan had a lot of work to do so he pushed through an started working J Then my other baby got fussy so it was the fight of the day “nap-time.” I started reflecting on how much work I go through to get this guy to take a nap. As I was walking, bouncing, swaying, singing etc, I thought how nice that would be if someone tried that hard to get me to sleep every night! Ha ha ha Can you imagine? It would be amazing J Anyways, this is what my fam bam did today and I thought I would share our not-so-fun fun day~

Thought I would share a 4th of July pic... not the best one of the fam bam but I had to show-case our matchy outfits :) (poor ryan for always having to wear such "themed" things for me!)

I'm too cute for my hair!

Chemo messed with the WRONG baby!!! So after an emotional day yesterday with hand fulls of hair coming out, we decided this morning to go ahead and shave it. We decided it would be on OUR terms and not cancers terms. I think it was so emotional because I think we have been in a little bit of denial and with a bald baby, it is more of a reality about what is going on. HOWEVER, he is adorable with no hair :) After talking with many friends they told me they had no hair until 2-3 years old so he actually wont be that different than some of my baldy toddler friends were :) I was hesitant about sharing a picture of him because I am still skeptical of how people are with my "open" story. Then I figured, don't go to my blog if you don't want my story right? ha ha ha And many babies (non-cancer babies) on my FB are baldies too and their mamas are posting away :) So here is my "too cool for hair" love munchkin!



an amazing note...

Sometime when I have bad days I read what people have written me... I have been having a hard day and a certain someone wrote me this a few weeks ago and I found myself reading it and thought I would share. This letter did make me feel better and when I think "why is this happening..." I think of the things she says, and maybe she is right... Maybe because of this more people will hug their babies more, or value life in a different way... Today was a hard day because I noticed hair coming out of baby D. I knew this was going to happen, but it was different when it actually did! The ONLY positive is that many babies his age still have no hair, and he is already stared at in public (because he is the cutest baby alive) so he wont get a complex about being different. Anyways, here is the kind message I wanted to share...

 "I wanted to share that we are all so inspired by your courage and strength and you have more people than you know praying for you and sending love and positivity your way. I'm sure that there are countless others who are experiencing what I've heard called "the miracles we don't see" which are, in effect, the miracles that you'll never get to see attributed to your actions, but were definitely sparked by your kindness, caring, selfless love which is and has been so obvious through this whole ordeal. Whether it's that you've made hundreds of people say extra "i love you's" or go see a doctor more regularly, it's the small things that are the big things, and you, my friend, are making small things happen in very big ways. It's no wonder you have such a happy, smiley baby who adores you. I hope this time brings you and Ryan closer together in your marriage and closer to God, and I hope you know and feel how loved and how important you are."

baby update...

I just realized I have not done an update in awhile... So we went to the hospital for 6 days and he did AMAZING on the chemo. This sounds crazy, but the hospital is turning in to a 2nd home. I am starting to know some other moms and LOVE the nurses, so it is always nice to see people you know. I have to admit, this last trip was so much better and easier than the first. I felt more prepared and knew what I was in for.

While we were in the hospital I was taught how to give Dominick a shot!!!!! I was told I had to give him a shot once a day and I was freaking out! I was taught Monday and I didnt have to give him a shot until Thursday so it is safe to say I lost my temper and the stress was too much to handle. After the first day I became a pro and I felt so comfortable doing it. It also helps that the baby doesn't cry :)

We went today for chemo and his blood counts were SOOOOOO GOOD! So we are done with the shots for now :) We added a med to the list to help with his blood pressure and we will see the heart doctor next Wed before his next chemo. We also have to follow up with the kidney doctor one day next week as well. Thankfully we see Dominicks old doctor in Fontana to do the blood pressure (saves us a few drives a week!)

As for baby, he is doing amazing! Today he got a little fussy but I think it is teething and I think he is starting to feel the chemo and has not wanted to eat :( Even thought we have our rough days, cancer baby or not, all little ones have their days! thanks again for the love and support from everyone :)

Play time with Benny boo :)

Plans have changed again... there is a heart problem

So, we went in Monday the 18th to see the kidney doctor and to get an Echo done on Dominicks heart. The kidney doctor said his kidney is doing better and they will just keep a close eye on it to make sure it can handle all the work. We have to do another heart test to make sure Dominick was strong enough for the next phase of chemo... well it isn't. I do not really understand what the numbers mean, but he was around a 16 when we went the first time, and he needed to be a 27 to start this phase of chemo. Before we left the hospital on July 2nd he was a 26 so everyone was positive it was going to improve to be a 27 by Friday July 22nd. Well we got the results and he is back down to around a 18. This causes 2 things... 1- he can't have the Chemo he was mapped out to have. So now he is being admitted back to Lomda Linda Friday the 22nd to have a 5 day/6 hours a day chemo. This is a more intense chemo but wont hurt his heart so as for now this is our best bet. 2- the fact his heart is not better is making the doctors think something is also wrong with his heart. While we are at Lomda Linda for the 5 days a peds cardiologist will come see us and do some test to see why his heart is not getting better. We are just praying it is something that can be fixed with meds and praying that he does not have anything seriously wrong.

I am just lately at a lost for words... I don't understand why all the bad luck and/or what ryan or I did to deserve this. I just feel like Ryan and I have been through enough, give us a freaking break! I could go on and on about how upset I am, but the truth of the matter is "it is what it is" so I have to deal with it. The only positive still is that this little champ is still so happy and amazing! I swear everytime they give us more bad news I think they are reading another baby's chart, because this one is too happy to have so many things wrong!

I do have positives to being in a hospital... you don't have to wear make-up! (the first few days last time I did, then started looking around at the other moms and thought what am I doing!) next, you can stay in PJs all day :) my favorite is the throw away bottles and the endless supply of formula and water you get when you ring your red button :) No washing bottles and no worrys about running out of water or formula! LAST in the middle of the night they come in and help you with whatever you need :) I did almost 3 weeks last time, 5 days wont be to bad :)

thanks again for all the support and love

Thought I would throw up my new favorite family picture :)

radiation

Monday we went in to talk to a Dr that does radiation and to hear what she has to say about the pros and cons. All of Dominicks doctors wanted Ryan and I to make the final decision if we want it or not... This was so hard Monday because no matter what we could not get on the same page and get all the answers we wanted. After a stressful week and lots of lashing out at one another, we went in today (friday) and finally feel like we understand the pros and cons of getting radiation and not. We finally made up our mind and we are more than likely not going to do radiation. To Ryan and I the cons out weight the pros so we are leaning towards not doing it. If he was a little older we would want  give it a try, but since he is so young it is just to risky and scary. It just seems like all the doctors are saying it is risking because of his age, and since we live in a crazy world where a doctor can't FULLY give you their advice, we feel they are secretly telling us not to do it. So, from here on out he will just be closely watched by his cancer doctor for any re-growth of the tumor. We are feeling so much pressure lifted from us with this decision being made and not weighting us down. Even though much of the tough part is over, we still have our moments and thank God they have been at different tiems so the other one is able to be there for support. We still have such a long road ahead with this whole process and it gets draining when we sit and really think about it! The only thing that is such a blessing is the fact this baby is taking everything in like a champ! We started baby food and he is doing so well with it. Today he got his 3 round of Chemo and still NOTHING as far as side effects! He truely is such a strong baby and is teaching Ryan and I so much about strength.

coming home July 2nd

We got to come home Saturday and we were super excited. It was like bringing him home for the first time :) and like the first time he had a themed shirt ready to wear for the special day. We had his room ready and everything cleaned and perfect! The only thing scary was giving all the meds and watching out for any signs that would get us back in the hospital. Being in the hospital is having a nurse around 24/7. I have to say I got kind of spoiled being there and them bringing me any and everything I needed. The only hard part is giving meds becasue at 6 months he has learned how to refuse them and spit it out or hold his mouth shut! ha ha ha

Back to reality however, is easier than we thought. He is super happy still and is having NO signs of the chemo. We know this will not last and there will be hard rounds, but the first few are easy and babies handle them well. For the first 72 hours after chemo we have to change him with gloves and be careful with the pee and poop because the chemo comes out and it is toxic to the rest of us. He is starting to try and roll again (he has been only on his back for a month so he is re-learning tummy-time and everything) and is doing amazing. We also today, July 4th, started baby food :) He did really well and I think he will be a good eater. We can only feed him on good days and not days he is sick so the process might be a little longer than ususal.

The diagnosis and plan

After waiting for what felt like years, we were told June 22 what they found and what we were going to do about it. They removed a 6inch, 2.5lb tumor growing out of his right kidney. Obviously his right kidney was also removed in the surgery. It was a Wlims’ tumor. It was/is a stage 3 cancerous tumor that will need chemotherapy and a little radiation. The plan is 25-28 weeks of chemotherapy and the radiation will be determined when we get there. This is not anything a parent wants their baby to go through, but if you could pick a cancer, this is the best one to have, and the kidney is the best organ to attack because you can live with one.  Ryan and I took classes on how to live with a chemo baby, and we were very overwhelmed with the 90-something page book we had to use as a reference. It is a lot of information and it is safe to say I have never felt more helpless and stupid in my life! It is like being in school all over again, but knowing if you don’t know something you could potentially harm your child… Our plan from here, was to test the heart on the 27^th, and if it is ready, start chemo… unfortunately, we did 2 test  Monday (27^th) and he is not ready for Chemo… Now, the plan is to re-test the heart Friday, and if it is ready, we will start chemo and HOPEFULLY go home!

This is a picture of Dominick sleeping after surgery and his cool new scar! As they say, “chicks dig scars!” This kid is a CHAMP!

heart problem?

After a Friday surgery we were anxiously awaiting the doctors to give us the OK to start chemotherapy that coming up Monday. Monday came and we were ready to do a “standard heart test” that will test the heart to make sure it is ready for chemo. We were told it was nothing to stress about because it is a standard test that 99% of the kids pass and they just do it as a precaution. THANK GOD THEY DO BECAUSE THIS KID FAILED! They came in shortly after and told us his heart was at a 16 and needed to be at a 27! I lost it a little because I finally felt that there was a light at the end of the tunnel and BAM light gone, knocked back down on our butt. I guess because of the tumor, his heart had been over working and the left side was swollen. I asked multiple times if this was a heart problem where he would need surgery, transplant, or additional maintenance and there were positive it was just from the tumor and it would be something that we could control with medicine and eventually wean off the medicine and he would have a normal heart. They rushed him to the cardiac ICU and started heart medicine that can only be administered through that unit. We stay there until the 23 and were happy to be moved back down to our home, the cancer ward. I guess they stabilized his heart enough that he could just go back on a basic heart/blood pressure medicine that the cancer nurses could give him.  

June 17 surgery day

Knowing your child need an operation is one thing, having to go through with it is another. I think there are many positives to having a baby in this situation verse a toddler or someone who can talk back and ask questions. The only bad part is not being able to communicate to the baby about what is going on and reminding them it will all be ok. His surgery was scheduled at noon, with a chance of going in early. We had to start fasting at midnight and anyone that has a baby knows that is also hard! Around 10:30 we were told they would be taking him within the hour. That is when I started to freak out. It became more real and even scarier than I thought. This risk of anesthesia and just the risk of operating on a 5 month old became so overwhelming and almost unreal.

They came in to get us, and both grandmas, Aunt Shawn, Alyssa and Alexis kissed Dominick and said bye. Ryan and I asked to walk with him to the pre-op room and to go as far as we could before letting him go. We sat in the room with many others waiting to go into surgery, met lots of the team that would be in the operating room and anxiously awaited them coming to take him back. Lucky for us, we feel in love with the surgeon and the anesthesiologist. We met the nurse that would be with him in the PICU if he needed to go, and we were also prepped as to what he might look like coming out of surgery. The time came to say good bye and I lost it. I was holding myself together pretty well, but when someone asks you to leave your crying baby it is a terrible feeling. I said I wanted to seriously walk until I could not walk with him anymore. They let us walk right up to the door and they asked us again to say good bye. There are honestly no words in the English language to how this moment made me realize how much I was in love with my son. Ryan hugged and kissed him and I did the same. Right as I handed him over to the team of professionals and doctors, I felt as though I was having an out of body experience. I lost myself in that moment. It was in that moment I cried harder than I have ever cried in my life. Nothing could have prepared me for the emotions I was going to feel. I was crying so hard I actually could not speak, could barely walk, and it is safe to say I had trouble breathing. We had to give our phone number to the front desk to get update texts on how the surgery was going, and Ryan had to talk because I just was gasping for air. I went out side, put my hands over my head, and tried taking deep breaths to calm down. Once I got myself together, Ryan and I headed to a near-by friends house and showered and rested. We went to Chili’s with friends and family and tried having a peaceful day since we knew we were in for the journey of our life. Once we got back to the hospital we sat in the waiting room for hours waiting for the final text! (Throughout the day, the hospital sent us text messages about how it was going… things like, starting surgery, port in, Dominick is doing well, working on tumor, tumor is out, Dominick is doing well, and the final one was a phone number to call because he was ready to be seen! It is amazing they can do this! Everyone said they started doing this so parents would leave the hospital, get something to eat, and not just sit around and wait by the door.)

We called the number and the surgeon answered, came and showed us the pictures of the tumor (6 inches long, 2.5lbs), then took us up to see our baby. He went in around 11:45am and we got to go see him at almost 7pm, so it is safe to say we were excited beyond words to see out baby boy. The surgeon said he rarely sees kids that don’t have to go to the PICU for a few days after an operation, but his breathing tube was out, and he was on his way back to the cancer ward and NO PICU. His scar had no bandage and was already healing! This kid was amazing and stronger than Ryan and I would have been. In the recovery room we could not stop smiling and taking pictures! We were so thrilled to see him doing so well and thriving like a grown man! Around 9pm we got to go back to our room. This has to go down in history as the longest day of my life!


 

Who is to blame for this tumor?

I think this is very important to write about and tell people about… I knew I was not to blame but I had a very hard time accepting I am not the one to blame. I asked every doctor and professional that walked in to our room. I felt as though I could have been more careful during my pregnancy, stayed away from some of the food I ate etc. I finally have the surgeon say something that made sense. He said if tumors were caused by something I did during pregnancy, it would be easy to cure. If it was from something I ate (lunch meat, yogurt etc) those food places would be closed down. I also felt bad because I stopped breastfeeding so early and people always say breastfeeding babies are healthier. All the doctors said the same thing about that too… if tumors came from non-breastfeed babies, more women would breastfeed and soo many more children would have this problem. I had professional after professional telling me there was nothing I did or could have done to make this happen.

So the next blame game victim was me again, but this time why didn’t I notice! I got over the fact it wasn’t something I ate or feed him, but WHY DID I NOT NOTCIE! Was I a bad mom? Would a day-care provider that sees children all the time have caught it sooner? And again, they said I have a big kid, so his tummy being big was kind of normal. They said if he was super skinny with a huge tummy, I would have probably noticed and brought him in sooner. Then as I started feeling his tummy the question came up, how in bathy time or baby massage time (lotion time) did I not notice one side of his tummy was larger and harder than the other side? The week we came in I was hooked to my camera and kept looking at pictures and kept asking myself, why did I think this HUGE tummy was normal? Am I stupid? Everyone made comments about how big he was and how hard he was… and I really that bad of a mom to think this is a normal size tummy? I think this is something sadly I will always feel is my fault. I do think I should have noticed sooner, and I do think it is a little my fault. I am a stay at home mom and my sole purpose is to make sure my baby is healthy.  Yes, thank God I took him in for an ear infection and the Dr agreed and did test… but it is hard to not blame yourself.

Lastly, my pediatrician. Everyone wants to point the finger at him because he is the doctor but I actually blame myself more than him… I am with him every day and this guy only sees Dominick once every 2 months. At month 4 he said he was big, but his weight and height were both in the 90 percent so it made sense to him and us. I also took him to an asthma specialist and he said the same thing, big kid, heavy weight. The thing I asked the specialist here is why wasn’t it caught and should it have been caught. They said these kind of tumors are usually caught when they are HUGE and by parents. They double in size when they grow, so when they start they get crazy big. The side effects are spitting up (normal in babies), breathing funny (also normal), big tummy (sometimes normal with allergies and constipation and big babies) and high blood pressure. The high blood pressure is the only thing the doctor would have caught. HOWEVER, they don’t check blood pressure until children are 3. All in all, Dominick’s doctor did the right thing by ordering a test and checking why his tummy was getting so big. Everyone agreed that if he said it is normal go home, and later in the week I found out it was a tumor, it would be a different story. The doctors at Loma Linda also reminded me he is a pediatrician not a cancer specialist. They said with primary doctors, they will only see ONE cancer case if any in their whole practice. Our doctor also has called and checked on us and could not be more worried about this little guy. And just for the record, Ryan and I plan on going back to him once we get released from here because he was so concerned and apologetic with us.

June 14th... the day that changed our lives....

This is the day I will always remember as the most emotional day I have ever endured. This was the day that changed my life forever…

I took Dominick to the Dr. the day before because he had been pulling on his ears. Some people say that baby’s do that when they get teeth, but my Dr always said bring them in and don’t believe “teething” rumors! While we were there I asked about his tummy being SOOO much larger than usual and he agreed and said it was probably constipation and just to get the X-ray done as soon as I can. I felt bad because we had dinner plans that night so we decided to go the next morning. The next morning, we got there around 9 and had the simple test done. Here comes what changed my life… We got to the car and Dominick’s doctor called before we left the lot. He said the hospital called and are very concerned with what they found. He said you need to come back upstairs and we need to have more test done today! I started crying and felt as if I was going to pass out! He used the word “mass” and I asked if that meant tumor… he replied yes. We went to upland to have an ultra-sound done, and the tech asked us to stay put while he got the radiologist! That is NEVER a good sign. The radiologist told us a huge tumor was growing out of his kidney. They couldn’t tell if it was attacking any other organs and to go home, pack for Loma Linda and get ready to be admitted! Ryan and I were a mess!!! I have to say, in that moment, Ryan and I realized the severity and the fact we could lose our son as an outcome. I think it came as such a shock because we truly thought we were going to have to change formulas or take meds for constipation or a food allergy.

We got to Loma Linda and they admitted us to the Cancer Ward? I was so confused because I had not really made the connection that this tumor could be cancer. Later that night, they did a CT-scan and the surgeon came in and showed us what they found and Ryan and I were SHOCKED to say the least! 90% of the picture they showed us was tumor. They explained they were going to see if he needs Chemotherapy first to shrink it or just go straight in and get it out… After lots of debate and tests, the surgeon and doctor left it up to Ryan and I. The surgeon said if it was his kid he would do the surgery because he was 100% sure he could get it all out without damaging any other organ. So, Thursday June 16 it was official and we were scheduled for surgery Friday June 17 and noon to remove this massive tumor.