Another hospital trip...

Well we had another trip to the hospital. But, thankfully, we are back home now.

Last friday I woke up at 7:15 a.m. to his heart rate being elevated and setting off the oximeter alarm. I thought he might be in pain so I went and gave him pain medicine. I repositioned him and I could immediately tell he had a fever, he was burning up. I took his temperature and it was 102.0! We are supposed to get him in within and hour of the temperature reaching 101.5 to get antibiotics and I had no idea how long he had this temp. He was also bright red and taking very shallow breaths.
I called the on-call nurse practitioner and she told us to go in immediately if I felt comfortable driving myself, otherwise call 911.

I made a few phone calls and his Aunt/nurse, Maya, was able to go with us. I got ready as quickly as possible and we rushed out the door. Traffic was bad but we eventually got to the ER. The nurses moved quickly when they realized that Nick was having difficulty breathing, he was retracting in his neck area. They gave him oxygen and within 15 minutes he was doing much better, just with the oxygen. His oxygen saturation never went down, which is odd, but just a little oxygen helped him a ton. They also took blood cultures, catheterized him for a urine sample and gave him a broad spectrum antibiotic.

They took a chest x-ray and compared it to the one he had about 5 days earlier and noticed some changes and decided it looked like he might be getting a little pneumonia but the antibiotic they gave him would help take care of that. But he was still working to breath so they decided to admit him.

Nick slept. He pretty much slept for the next two days.

They continued the antibiotics and we waited to see if the blood cultures grew anything.
The next day he was doing fine! It was so strange. He was still retracting a little and he still has the stridor but he really was doing so much better. But they couldn't release us until the blood cultures came back.
They came back the next day and they were negative but his urine grew pseudomonas and a strep.

So we got to go home Sunday on two antibiotics.

Nick is doing good, he is acting like himself again, well like himself on chemo. He is still very weak and is not able to hold onto his toys and play like he normally is able to.

He just seems so frail and every day it seems like he is dealing with something new. It breaks my heart to watch him fight so many different obstacles. The best I can do is hold his hand to help him through everything and pray that God will heal his little body.

Thank you so much for the kind words and for the prayers. Please continue to pray for little Nick, he is only halfway through chemotherapy and still has a lot of fighting to do.

Trying to get him to smile....

Got it!! 

Sweet face boy!

Stridor

Well there always seems to be something happening with Nick, medically speaking that is. A week and a half ago he was diagnosed with C. Diff. For those that do not know what that is, it is one of the worst things you can 'catch', in my opinion. It is terrible diarrhea that can cause severe stomach pain and cramping. It is highly infectious because the only thing that kills it is sodium hypochlorite, or bleach, at least that is what I have been told. Alcohol does not kill it and as many nurses and doctors preferred method of 'washing their hands' is using hand sanitizer, you can quickly figure out why its running rampant through hospitals and long term care facilities.

Terrible. Just wash your hands people.

Anyways, so he just finished his round of Flagyl, an antibiotic, to get rid of it. But the flagyl has many side effects as well so Nick has had bad stomach pain from that and it was causing him to throw up sometimes as well. So glad that part is over. Then almost as soon as he was done with the antibiotics he started getting stridor, which is a high pitched wheezing sound when breathing. This usually comes along with a cold, the croup or asthma but Nick had none of those, so we brought him to the ER. They gave him a breathing treatment and other steroids but they didn't seem to help at all so they knew something else was going on. They put a scope down his nose to look at his upper airway and see if they could figure out what was causing it. They took neck and chest X-rays. The resident though he saw some narrowing in Nick's airway right below his vocal cords. So they decided they needed to put him under anesthesia to figure out why he has narrowing there. As the surgeon described what they had to do he mentioned the word tracheostomy.

Oh no, not that. Please, Lord don't let him need a trach, I prayed.

So they did the scope and determined there was not any narrowing in his airway but his epiglottis was very floppy and he had two ligaments that were really tight so the surgeon cut those hoping it would help with the floppiness and the stridor. Yay, no trach for now at least! But he wasn't sure why all of a sudden his airway was becoming floppy or losing tone. But ever since a short while after Nick started chemo his tone in his legs and hands and arms started to change, he was more floppy.

Bingo! That was it, his airway must be losing tone like the rest of his body. But why was he losing tone? Hopefully, he has not had some type of neurological change.

Obviously, Nick was admitted and they consulted with neurology. We had never seen this neurologist before but he seemed extremely intelligent and he felt that Nick's decrease in tone was due to all the medicines he's on now, especially the chemotherapy drugs. And that the change in his tone would go away once the medicines are stopped and there were not any neurological changes.

Then the neurologist started putting Nick's symptoms and characteristics together and asked us if anyone ever tested Nick for any abnormalities on chromosome 11 the short arm. I told him I didn't think so. He explained that with Nick having Wilms' tumors now that the possibility of him having a deletion there or an abnormality was greatly increased and he would be surprised if that wasn't the case for Nick.

Really? Another different genetic diagnosis? I am just starting to get used to the last one! Well either way I felt that we should figure out if he's been tested for it before and if not that we would go ahead and test him for it. There were two specific syndromes that he mentioned but he had a really thick French accent so it was a little hard to understand which ones he mentioned.

So we'll meet with the genetics doctors again and see what they come up with.

Nick still has the stridor and they are not hugely concerned about it and they don't think it's going to get worse but if Nick gets any type of cold or congestion then he could have a really hard time breathing with all of the secretions. If it became severe enough he would need to be intubated. So we are really going to have to watch him and hopefully we can get his insurance to cover an oxygen saturation machine so we can monitor him at home better.

But (there's always a but) his blood levels are low, especially his hemoglobin. It was 7.2 yesterday so they did  a blood transfusion today. And they want to keep an eye on him again tonight to make sure his breathing does not get worse, then we should be able to go home tomorrow. Transfusions scare me so I'm glad they are keeping him overnight, just in case he has a reaction.

This was a little after the transfusion, his color is already perking up and he seems to feel much better!

Thank you for the prayers and thoughts. Please continue to pray for Nick, that he doesn't have a reaction to the transfusion and that he will stay well and not get sick.

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.