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!