Baby Nikolas: Hasn't he been through enough?

I hate writing this post.

I am mad and frustrated that I have to write about this.

On Wednesday, August 29th, Nick went in to clinic to start his next round of chemo. The nurse accessed him, no problems there. She sent his blood off and started his pentamadine while we waited for the labs to come back because his chemo was count dependent, meaning they have to be over a certain number for him to get the drugs.

His count was 7100. Perfect, let's order the chemo drugs. So we waited for those to be brought up from the pharmacy. Nicky was slightly agitated but I think it was still withdrawal from weaning the methadone and ativan.

The dactinomyacin and vincristine arrived just after we met with the nutritionist to go over Nick's diet. Nicky's oncologist came in next to go over a few things and the nurse got ready to infuse the chemo drugs.

The procedure is to pull back the syringe to make sure there is good blood return and she says she did so she began infusing the dactinomyacin. Nicky was still agitated but became more so and was flailing his arms around as she was infusing and I'm trying to talk to the doctor and somehow keep an eye on Nikolas. Dactinomyacin is just a 1 ml push over 1 minute so it can be manually pushed or setup to run on the IV machine. I remember it happened so fast, the nurse pushed the chemo so quickly, no where near a full minute. And next, saline must be pushed through the line to make sure the chemo drugs do not have direct contact. So the nurse pushed the saline through his line.

Suddenly, the nurse looks down and says something, I'm not sure exactly what. But the side of Nicky's chest is as big as a baseball. Literally, things had happened so fast but suddenly they were going in almost slow motion.

Oh no, oh no. I don't think it really hit me right away or maybe I just didn't realize how bad this was.

The doctor asks her which drug he just got. Thankfully, and the only thing good about this, it was not vincrisitine. Vincristine infiltration is usually fatal. But his doctor went to check the protocol if dactinomycin is infiltrated. The nurse left too.

So Maya, our home heath nurse that day (and good friend), sits next to Nicky and starts to squeeze as much fluid as she can back out of the injection site and quite a bit is coming out, which is good. It seemed like the doctor and nurse were gone forever.

Finally, the nurse and doctor come back and the nurse states that she doesn't think the chemo drug was infiltrated because she had good return just before infusing the drug. The doctor agrees and the protocol just states using ice packs 3-4 times a day for 15 minutes each time for 3-4 days.

Well um, ok. There really is nothing else we can do. Except wait, watch and wait.

Maya quickly looks up the drugs facts for dactinomyacin. It is highly toxic, she tells me the literature states:

Dactinomycin is extremely corrosive to soft tissue. If extravasation occurs during intravenous use, severe damage to soft tissues will occur.

I was not too alarmed at first. Honestly, I didn't really know what happened or how severe things would become. I am a very optimistic person so I always hope for the best and I think in my mind I was really hoping and praying that no chemo drug got under his skin.

They reaccessed his port and gave him the vincristine. They gave us an ice pack to use before we left and then we were sent home....and our horror story begins.

The next day the area around his port looked fine. But after about 36 hours the area became a little pinkish. And it continued to look worse and worse every day.

By Monday the 3rd the area looked like it was getting an infection and it was warm to the touch. We called the doctor on call and they told us to take him to the ER. He was admitted and monitored for the next 24 hours and started on IV Clindamyacin for what looked like cellulitis. They did an ultrasound but didn't find anything significant. But since they really didn't know what to expect they really didn't know what to do or if things would get better or worse. By the next morning he seemed to be doing better so they sent us home.

By Wednesday evening the swelling around the port and on the whole right half of his chest was getting significantly worse, the swelling was spreading to his back. He was also having trouble breathing. I put the pulse oximeter (pulse ox) on and he was satting about 85. Not good and he was miserable. He didn't want anyone touching him or that area. We called the doctor on call and again they told us to take him to the ER or call an ambulance.

We quickly took him to the hospital again. Again, they didn't really know what to do or what to think except switch him back to IV clindamycin and give him oxygen. He was also on his highest dose of pain medicine, Oxycodone.

By the next morning the swelling was worse and the whole right side of his face had started to swell too, his eye was almost swollen shut. They quickly did an ultrasound to make sure he didn't have a blood clot somewhere. Thank the Lord he did not! But we were still not quite sure why his face was swelling.

He looked so miserable and it was breaking my heart because we could do nothing else but watch in horror as this terrible toxin wreaked havoc on our little boy.

So long story short (because this is getting pretty long) the doctors started him on DMSO or dimethyl sulfoxide. It is sometimes used for extravastation to help with swelling. It is not used very often and is not FDA approved for many uses.

But it helped. By the next day, the swelling in his face had significantly decreased and Nick continued to do better otherwise as well. They determined that the respiratory issues he had were a secondary virus and they continued to get better as well.

Nick was able to go home that Saturday. So overnight the first visit and 4 days the second visit. That's enough for us!

Unfortunately, our horror story doesn't end there.

Through our own research and questioning a former sales representative (he used to sell these types of ports) we could not determine without a doubt that his port was not damaged somehow and that it would be 100% safe to use the port again. The sales rep informed us that the dactinomycin could not damage the port itself but it is possible it could damage the catheter.

So we had to figure out some other way to give Nicky his remaining 4 treatments of chemotherapy. Our options were a PICC line, just like a port except it's peripheral and it isn't completely under the skin or give the chemo through a regular IV. His doctor felt that we could possibly use his port still, after further testing, but we really did not feel comfortable with using it again. And putting another port in was a last resort, at least that's what we were told.

We didn't like either of the options but we went with a PICC line because it's safer and it can be kept in as long as it's needed. And because chemo drugs are extremely corrosive, there is a much higher chance that his little veins could not handle it and he would get infiltrated again.

He had his PICC line placed on September 24th. He was having a broncoscopy and micro-laryngoscopy that day already so we had them place the line while he was, hopefully, still somewhat sedated. They weren't able to get it in right away and we had to have IR (interventional radiology) get it in but we still got it in that day.

He had his next round of chemo on the 26th. It was somewhat nerve wracking to watch them push the chemo drugs in again knowing the potential damage it can cause but thankfully, everything went well that day.

Unfortunately only 4 days after his PICC was placed it broke. Literally, a piece of it just fell off. It was clamped so it was still considered sterile but we had to take him back in the have it replaced. They were able to use the same vein but it took 3-4 tries, and 4 X-rays, to get the catheter in the right place just above his heart.

And his port had to be removed. The longer it's left in the higher risk of developing a blood clot.

So Nick had his port removed and had a CT of his kidney's on October 3rd. Everything went smoothly except for having to wait an extra 2 hours on top of the 4 normal hours before a CT is done. Waiting is not fun and I have slowly lost overall patience as I've dealt with the hospital staff more and more. Plus Carsen always makes things seem to take much longer than they do :o)

So this is what we have been up to for the past month or so. It's been very hard. Emotionally and physically, especially for Nick. I have been extremely frustrated and hurt by some of the staff at the hospital, especially for their carelessness. Nikolas should not have had to go through this. No child should have to deal with cancer, but to be hurt by the people that are supposed to be helping him is appalling.

We are taking steps to hopefully prevent this from happening to any child ever again.

But I'll leave that part to another post.

Oh and I did want to post a picture of this beautiful quilt make for Nikolas by Barbara....its so amazing and cute!! Thank you Barb!