Sunday, April 1, 2012

The beginning of a long road....

We got home from the hospital on Friday. Nick started chemo on Thursday after they put in a central line on Wednesday.
They did not do a biopsy on the tumors because this type of cancer seeds very easily. Meaning if they went in to just remove a small piece it would be very likely to spread. Instead they do chemotherapy for 6 weeks and if the tumors shrink significantly they are assured that it is Wilms tumors with favorable histology and they will remove as much tumor at that point that they can, and continue with chemo for 13 more weeks. If If they do not shrink, or only shrink a small amount, they would at that point go and remove a piece for biopsy. Either way he will continue with the chemotherapy for at least 19 weeks, longer if it doesn't react the way we need it to.

The left tumor is quite large, a little bigger than a grapefruit and the right one is much smaller but starting to grow quickly as well. The left tumor (on the right in the picture) is the semi-round object that is pushing everything around (the dotted line is going through it at the top). Hope that makes's the largest object in the picture. Yeah, pretty scary.

We have to go to the clinic weekly to get the chemo. Each week he will either get 1 or 3 different chemo drugs. Two of them will lower his blood counts and when his platelet and neutrophil counts are the lowest is when we have to be extremely careful that he is not around anyone that is sick. They tell us to not live in a bubble but honestly, that is kind of what we are going to have to do. I cannot imagine Nick getting sick going through all of this. It's the last thing he needs. We are sterilizing and washing things like crazy. Especially the other kids hands, those are probably the worst sometimes.

Nick is having a very hard time with nausea. He is on Zofran but that doesn't help much. are being very careful with what we feed him as everything needs to be as clean and sterile as possible. He is still on some formula with his diet and for whatever reason Children's Mercy does not 'believe' in the blended diet. They would rather a child live off of a synthetic version of food. That makes staying in the hospital even harder, they only give him formula, none of his regular diet which normally includes fresh fruits and veggies and oatmeal or rice cereal. But now that we are home we will work closely with his dietician from Infant Toddler and work on something that he can handle. And who wants milk when they don't feel good? They usually say to stay away from dairy products during chemo but that's all they want Nick to have?? Craziness.  I have been giving him some expressed breast milk though. With all the amazing things breast milk has in it and I am sure it will help with his immune system.

Finding these tumors was a huge surprise. We went to see a KU GI doctor on Friday morning and he felt a mass in his stomach, he thought it could be his spleen. He wanted us to get an ultrasound right away but we were actually already scheduled for an annual ultrasound on Nick's kidney's later that afternoon at Children's. So he gave us orders for that area of his stomach hoping to have them add it on while doing the kidney ultrasound. While doing the ultrasound the technician called the radiologist down to look at the scanning. He seemed very concerned but didn't tell us anything at this point. We were asked to go back to the waiting room while the doctor tried to get ahold of Nick's nephrologist. They finally came out into the waiting room and told us that Nick needed to be admitted and they were going to get a consult from hem-onc (hematology/oncology). They were concerned about the masses he had on both his kidney's but they weren't telling us much else than that. When I heard those words, 'hem-onc', my heart started to fall apart. 'This can't be happening. It can't be cancer, they are probably just the cysts that Nick has always had on his kidney's, they have to be wrong, Nick doesn't deserve this...why Lord?' My dad later reminded me that God is in control, He has Nick in His hands, nothing happens that He doesn't allow. Because my mind and heart had lost it's faith in the last couple of hours somehow. But my dad helped me realize, everything will be OK, God did not forget about Nick.

The crazy thing is, we had just seen Nick's nephrologist a month before and he either didn't feel the masses or missed them AND we had just seen his pediatrician the week prior and he missed them too! My faith in doctors is steadily going down. It was easy to be upset at first, how had these doctors missed something so obvious? Joe was infuriated. (I am just glad that when his nephrologist, who had been out of the country in India, stopped by the room that Joe was in the shower and there wasn't a confrontation!) But I felt that the Holy Spirt was telling me that this was God's timing. God did not want us to know the month before because it was 1 week before Carsen would be born. He didn't want us to be going through this before Carsen got here, so we could enjoy our time with our new baby and not be worrying about everything. God's hand is over the situation, but it's very easy to forget that.

Thank you all for your prayers and kind words. Each one is truly appreciated. We are so blessed to have so much comfort and support. I will continue to update as I have time. Please pray that Nick can get comfortable and that these chemotherapy drugs' side effects don't last long, he is having a rough time.

A happy picture-taken in February.


  1. I haven't visited in a while. Wanted to see a pic of the new addition. Who by the way is ADORABLE! CONGRATS!! The news about Nick is just awful. Praying so very hard for your family. I wish I could help..


  2. I am so sorry you and Nick are enduring this :(. Thoughts ad prayers for your family.

  3. Laura and Joe, We are so sad for little Nick and for all this baby has endured. I also believe in God's timing and know He has an incredibly huge love for Nick and He will be with him every moment as He will be with you and Joe too. I can not imagine how hard this all this is and with a new baby to care for on top. My girls and I are praying for you and would be glad to come love on the kids or bring meals, help clean or run errands for you, anything to help. Please let me know what and when you want us to come. We are fairly flexible with our time so please do not hesitate!!! I mean it! 913-526-5118 Meghan and girls.

  4. You are so amazing and strong. I cannot even begin to imagine what you are all going through!!! I am so sorry! I wish I was closer so I could help. I am praying for Nick and your family. Stay strong!