Good news?

Well Nick's oncologist called me right as we were leaving from the CT. His tumors have shrunk 50%! Praise the Lord!
But the surgeon does not feel as if he can resect the left one and leave enough good kidney tissue behind. So the plan right now is to do 6 more weeks of the same chemo medicines then do another CT.

Here's a picture of before and after:

As always, thank you for the continued prayers, they are still very much needed!

Big CT tomorrow

Nick is scheduled for the big CT tomorrow. This will be the big turning point in Nick's treatment. It will determine if we are able to do surgery to remove as much tumor tissue as possible or if we need to do 6 more weeks of chemotherapy before attempting surgery. I am not able to feel the tumor on his left side any more, definitely a good sign. We should have answers tomorrow, or at the latest Wednesday.

Nick is such a little fighter, he is so strong. He seems to run out of energy faster than ever before. He still plays with his toys and smiles and laughs as much as we can pull out of him but he drains pretty quickly and sometimes will sleep 18-20 hours a day.

He still has a little hair, not much and it's starting to look a little odd but he can't stand the sound of the hair clippers, he cries as soon as they are turned on, so we will just let it fall out slowly. A cute hat is still on my list to find.

I will update as soon as we find out the results and have an answer from the surgeon.

Please continue to keep Nick in your prayers.

Baldy

Nick started to loose his hair on Thursday. Right now it just looks like he has really thin hair, its not patchy or weird looking either. I am sure in the next few days it will be gone. Maybe we can find him some cute hats!

He did get a fever the Thursday before Easter so we had to go to the ER for a dose of antibiotics. We had an awful ER experience because they had a 'newer' nurse trying to access his port and when that didn't work they had the same nurse try to get an IV in his foot. That didn't work either and they had another nurse come in a try his wrist which didn't work either. Finally they had a nurse from the hem/onc floor come and try his port again. Finally she got it. I will never again allow a nurse that does not have a ton of experience to access his port!

He was obviously quite uncomfortable (not just from being poked so many times) so they decided to admit him. He was constantly grinding his teeth and crying out, my heart just ached for him. I didn't know what to do to help him feel better. They thought he was in pain because he was constipated because he had quite a bit of stool on the X-ray and he hadn't pooped for a couple days. So we starting giving him more Miralax. After a whole day and no action we decided to give him Magnesium Citrate, which he threw up right away, and GoLytely. Within a couple hours he was getting cleaned out very quickly, we had to change his bed twice! He was still very uncomfortable and had a slight fever but there was no reason to keep him and his blood tests all came back normal so we went home. He had been given oxycdone which seemed to be the only thing to help him but it is constipating (along with the chemo meds) so they told us to try and use it 'sparingly'! We told them we would try but when we got home he was pretty much on a schedule getting the pain meds, every four hours. If he was almost due for the pain medicine he would definitely let us know, it was heart-wrenching. You just feel so helpless watching this sweet boy in so much pain. He was sleeping a lot more because the pain medicine pretty much knocked him out, which at this point was the best thing for him if he was going to be in pain all the time.

He seems to slowly be doing better. He is still on the pain medicine but not as often. He is still grinding his teeth but he is not crying out as much. He doctor said that sometimes one of the chemo meds can cause jaw pain and it's possible that is why he is grinding his teeth but there is not much we can do besides give him the pain medicine. He also screams out when I am changing his shirt, like he is in agony. We think he might have peripheral neuropathy as well, which can cause intense pain, numbness and sensitivity to cold in extremities. But the pain meds seem to help that as well. I just hope the pain doesn't get worse again after this next does of chemo, which is all three drugs again.

Please keep praying for this sweet precious boy. And thank you for thinking of us and praying for us and for the comments, they are very appreciated.

Nick is actually smiling under the mask, he thinks they are pretty funny!

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 sense...it'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.

We need lots of prayers...

I don't have much time to post but I wanted to let everyone know that we found out on Friday through a routine kidney ultrasound that Nick has two large tumors on both his kidney's. The left is significantly larger, about the size of an orange. They believe he has Wilms' tumors. They are malignant. He will be admitted on Monday and will have a CT to find out if its spread. Then they are wanting to do chemo right away. Nick is in some pain as well, we think the mass is so large on his left side that it's causing pain in certain positions. He really likes to be laying flat and he has been sleeping a lot lately.
Please pray for us during this very difficult time.

Nick is a big brother!!

On Friday, February 24th 2012, at 9:41 a.m. we welcomed Carsen Jax Taylor Ketcham into the world!  He already has a few nicknames, including CJ and C Jax!
He is perfectly healthy and looks a lot like his older brothers. He weighed 8 lbs 2.8 oz and is 19 inches long. He is a breastfeeding champ even though he was down to 7 lbs 4 oz when we left the hospital on Monday.
Nick doesn't really like his cry, it is rather loud and ear piercing though!

We are trying to adjust to having a new little one around. Its not easy but with the help of our nurse and friend Maya, and the help of our family and friends its been a much easier transition than we expected...at least so far!
We are very blessed and praise the Lord that he is healthy and so far has no medical issues!

Long needed long post....about me

So I have been meaning to post about a few topics for awhile but it seems to always be the last thing on my list. But here it goes...
So I often get comments from people, usually family, friends or nurses, about how my hands are so full and 'wow, you handle so much!' I usually just laugh it off and just reply 'oh yes, I know.' But during the Christmas holiday I was able to sit down and speak to a few family members and discern that I really do handle a lot and what I do for my family is no small feat. (Thanks Grandpa!)

I am not bragging at all, trust me. But I just wanted to be able to write down how I am able to handle so many things and still be sane.  But first let me give you all a glimpse into my daily life and bear with me, this is long but I want to try and include lots of information for my own purposes!

So we have three, soon to be four, children.

Brianna is 6 and in 1st grade, she is the sweetest girl but can be dramatic sometimes, just like any girl! But she's my only girl and I love her to pieces. She is in 1st grade and has been in speech for a few years (but just got dismissed, yay!) and has had some trouble with reading and math-really no big deal. But it can be hard to find time to work with her and sit down and read the library books she brings home. I think I have the hardest time with that, not being able to give Brianna more time and I feel like I'm failing her in some areas. Plus there's always Brianna's 'other' family. Brianna is not Joe's biological child, even though he has helped raise her since she was 1. Her grandparents love to buy her things and take her places, but it's difficult because her father, Josh, has never really been in her life. His parents have always pushed for him to be but he just doesn't care. Recently though, he got married and had another child and it seems like his parents are again pushing for him to be around more. So they take Brianna on outings and usually Josh, his wife and son, are wherever they plan on going. It's frustrating not knowing if I'm making the right choices for Brianna regarding this situation. I know they are her family as well but it's hard not to see what they are doing as manipulative for both her and I.

Benjamin is 3 and is in preschool two half days a week. Most of my family and close friends already know this but Benjamin can be a rather difficult child. He is a very rambunctious, full of little boy energy and many times he just doesn't know where to draw the line. Many people may say 'oh, he's just being a little boy' and to a point that is true but Ben doesn't usually ever stop. Meaning, he's like the energizer bunny, without an off switch. I love my Ben very much but most of the time he is more work than Nikolas! And Ben is a little cutie and always says the funniest things, which makes putting him in time out even harder!

And of course, Nikolas, our sweet, laid back 17 month old. The one person who can take my frown away without doing or saying anything. Nick himself is really not hard to take care of. But he cannot sit up, walk or crawl, so he can't get into anything. But Nick always has seems to have a doctor appointment or a therapy class. We go to a wonderful place called the Lee Ann Britain Infant Development Center. Here, Nick goes to different therapies twice a week. Monday's we go for about an hour for speech/feeding therapy and occupational and physical therapies, then on Thursday's we go to what is called a baby class. There are about 7 other babies that are the same age as Nick, who get group therapy together. We do every type of therapy from feeding to aquatics to music. Its quite fun and I really enjoy seeing the other babies and how they are developing. Usually once a week we also have therapists come to our home through a state program called Infant Toddler Services. We have an OT and a vision specialist come out to work with Nick relating to almost every aspect of his daily life. They are always helping me figure out solutions to situations for Nick regarding sitting, sleeping, bathing, everything really! And once a month a nutritionist comes out with them to work on Nick's blended diet we have been doing for awhile. During the day I try to do different therapies with Nick, but lately with my giant belly it has been pretty hard and that does tend to ruffle my feathers, so to speak. I hate when Nick is just laying in one of his seats, or on his boppy pillow just with his pacifier and no one is interacting with him. Since he is not able to do much himself, mainly due to muscle tone and coordination issues, many times he will lay there and wait for someone to come play with him.
I hate it.
I hate that I cannot give him every second of my time. My heart breaks because I know he just wants to play or have someone interacting with him in any way. The most he can do by himself is roll around on the floor some and if you place a toy in his hand he might wave it around until he drops it but then its done, he can't pick it back up by himself. And he doesn't cry for someone to play with him, he doesn't even cry when he's hungry. He only cries if he's in pain or he might fuss a little if he's had too much stimulation or therapy. Nick does not have a lot of endurance to do much of anything but when he is awake and wanting to play I try so hard to make sure he doing something but many times I cannot play with him.
I do not think that Joe has the same mind frame when it comes to Nick. He doesn't see Nick as needing constant attention when he's awake. Joe helps a lot with Benjamin and Nick sometimes as well but many times it's Joe that will give him his pacifier and leave him there. I don't mean to make Joe sound like a bad father, he's not. I just wish he would put a lot more time and effort into helping with Nick and playing with him without me asking. Nick's care usually falls onto me, which I really prefer anyways but being 9 months pregnant and extremely tired is really starting to take it's toll on me. I admit that I sometimes do have anxiety about how I'm going to handle a newborn with everything else.
BUT recently Nick got approved for the TA (technology assistance) waiver. Basically it pays for a nurse or care person to come into your home for X hours a week. We were blessed enough to be approved for more than 40 hours a week of care. And our wonderful friend, Maya, is going to be one of the nurses that will come and help us with Nick! This is truly an answer to prayers!

Our fourth little one, Carsen, is scheduled to be born in 3 weeks! I cannot wait to meet him and add him to our wonderful family. I have had a relatively easy pregnancy so far, except I am starting to get the normal aches and pains from the last weeks weeks of pregnancy and it seems my energy level is slowly being depleted day by day. Lets just say I cannot wait to be done being pregnant!

I also am working towards my RN, ASN. I have taken all of my prerequisites except for two, Physiology and Microbiology. I am currently taking Physiology, the other I plan on taking this summer. This semester I am only taking online classes which really helps but it can be hard to plan time to make sure I don't fall behind. I am also taking a parenting class.



Okay, sorry, that wasn't supposed to be so long but I guess it is a pretty good insight into my life.

Back to juggling a handful, the first and main reason that I can handle such a full plate is that I do not do one thing by myself. God is with me every step of the way. I would not and could not do anything without His hand upon my shoulder.

I recently read a quote that I just loved-

The second reason I am able to handle a lot is I have an amazing support system of family and friends and fellow bloggers, nurses, therapists and a few doctors that make my life much easier. Our family is so blessed by almost everyone we come into contact with, even if they don't know it. I am usually able to take away something positive or helpful from every person we come in contact with. That's mainly my personality type as well though, I am a very optimistic person. My glass is always half full. God also made me a lot like my mom, with a lot of patience!

The third reason is that I don't dwell on everything I have to do. I don't stress over every little thing, even though sometimes it might seem an impossible task or chore. I just do what I have to do because I know this is the job that God has given me. God doesn't plan on me failing and neither do I. 

Love these verses:

Lastly, I am always reminding myself how blessed I am. My life is blessed in every way possible and by thanking God on a continual basis I am able to reflect on everything He has done for us and is doing for us. I know that God wants us to bring everything to Him, by praying. But after praying for something I don't continually ask and keep praying for it, I just continually thank Him for giving an answer to that prayer. Because He does have an answer and it is coming. By teaching myself to pray like this it has really helped  build my faith and remind me of my blessings. I also remind myself there are many families going through similar situations and their lives are no easier than mine, some families have much tougher situations than ours as well. I follow a few blogs and I truly admire all of the parents I read about and I get a lot of inspiration from them!

 Every tiny step that Nick accomplishes is huge to me, and I praise God each time. 

Well thanks for reading, if you've read this far! God Bless!