Interim Maintenance

Friday morning I awoke once again with the birds, Ezra and I headed over to the hospital to have another PICC line put in. I was really upset to find out that because he was out patient he wouldn’t be receiving any sedation, not even conscious sedation (versed).

We waited for an hour while some numbing cream sat on his arm. Then I had to take him back to what looked like an operating room, and leave him there, with a bunch of strangers. I felt like I had been punched in the stomach. Every other time he has been taken away from me he has at least been on some sort of mild sedation. I just kept thinking about how scary it must have been for him. I really hope he forgives me for all of this some day.

They were able to place the PICC line in and we headed home.

Later in the afternoon we went back to clinic to receive chemo. After another hour wait, they finally just decided to give Ezra his chemo, we were waiting for a seat in the infusion room, and a seat never opened up.

Ezra started Interim Maintenance on Friday. It is 56 days long and will consist of the following.

Vincristine, & Methotrexate (chemo) through his IV on days 1, 11, 21, 31, & 41.  Then another lumbar puncture with Intrathecal Methotrexate on day 31.

So we at least get a break from lumbar punctures. He also is only taking one medicine orally and only 3 times a week. Which I know he is grateful for.

Side affects for this phase are mostly lowered ANC, mouth sores, and nausea. He is too young to receive the anti-nausea medicine they typically give to older kids. Something about it causing seizures in babies. So lets hope he doesn’t get nauseous!

PICC this

Well we went and saw the surgeon today, and he thought that the wound would be healed enough in another 2 weeks or so. Then they would put another port in. They are just being super cautious with the second port, so we don’t have to have a repeat port infection.

Tomorrow, bright and early I have to bring Ezra into the hospital to get another PICC line put in. They don’t want to delay his chemo incase his wound ends up taking longer to heal than they think.

Assuming the PICC placement goes well, Ezra is also scheduled to receive his first rounds of chemo in his next phase, Interim Maintenance.  I will explain that more in detail tomorrow.

I can’t wait for this week to be over. I am sure Ezra feels the same.

PICC line is out

Over the night last night Ezra somehow managed to pull his PICC line out. Lovely. So we went in to clinic today to have them look at it. I was not sure if it was pulled completely out….it was.

They sent us over to get blood drawn, they wanted to check his counts, and to get certain levels for the chemo he was supposed to receive tomorrow.

So after waiting for 45 minutes to get lab work done, they lost our papers. It ended in me being irate in tears, talking with the lab manager. It wouldn’t have been so bad but I had both boys, a 2 and a 4 year old….we all lost our patience after about 20 minutes of waiting.

We then went back and waited back at clinic for his lab results. Anthony came and relieved me so I could at least get Rowan out of there.

Tomorrow we have an appointment to meet with a pediatric surgeon. He is going to look at Ezra’s wound and decide whether or not it is safe to put another port in. If so he would probably have surgery Friday for that. If not, we may put off his chemo for a week and then put a port in the following week. If the surgeon thinks its going to be longer then 2 weeks to heal, he will have to get another PICC line put in.

Ezra’s counts are great right now, so it would be an ideal time for him to get another port put in. We hate the PICC line with a passion, and really do not want another one.

I will update tomorrow after our appointment with the surgeon.

What’s In a Number?

Our next three years will revolve around a number. The number is called an ANC (absolute neutrophil count). ANC is a measure of how many neutrophils are present in your blood.

So by now you are probably wondering what the heck is a neutrophil? A neutrophil is a type of white blood cell that help fight infection.

The chemotherapy Ezra is receiving will often lower his ANC, drastically so sometimes.

A normal healthy persons ANC is usually between 1500-2000. Let’s say you get sick though and are fighting an infection, then your ANC would climb higher.

Ezra’s ANC has at 4,000 at one point when he was fighting off his port infection. However, a really high ANC can also be a sign of relapse.

This number will dictate our lives. Right now Ezra’s blood is tested weekly. Last week his ANC was 1600, a very good number. With a number that good, I feel comfortable taking him out to places like the grocery store, outdoor parks, etc. 

During Induction (the 1st phase of Ezra’s treatment) his ANC dropped to 300. It was during that time that he caught that blood infection. There was just nothing there to help him fight it off.

An ANC below 500 is called neutropenia. During neutropenia Ezra’s system is greatly compromised, there is little to no infection fighting cells present.   If he does have to leave the house, he has to wear a mask. The only reason he would go out during those times would be for a Dr.s appt.

I fully expect Ezra to be neutropenic again, I am just enjoying the time that he isn’t! Just another look into what our lives have become.

Silly baby

 

Chemo has made Ezra crazy! Its just great to see that it isn’t slowing him down. Sorry the video is sideways…I was holding the camera the wrong way, and I have no idea how to fix that….just tilt your head :) But in the future I will hold it the right way!

Lumbar Punctures

Tomorrow we are going in early for Ezra to have a lumbar puncture (aka a spinal tap). Usually when doctors perform LP’s they are only going in to collect a cerebrospinal fluid (CSF) sample. With Ezra they not only collect a sample but also inject chemo in the form of Intrathecal Methotrexate. It is given to prevent leukemia cells from entering into the brain and spine. At Ezra’s diagnosis he did not yet have any leukemia cells in his brain or spine…a very good thing.

This is what the needles look like that go in to Ezra’s spine…scary, I know. The needle is inserted between the lumbar vertebrae L3/L4 or L4/L5 and pushed in until there is a "give" that indicates the needle is past the dura mater. Like this.

Ezra has had at least 4-5 of these done already, and he will have many more to come. We go in and they give him a drug called Versed which makes him all silly. Then they wheel him away and he is put under for the procedure because of his age, for adults you just get a local anesthetic.

They come and get me after he is out, and still has not yet woken from the anesthesia. He wakes up pissed off, hungry , and thirsty (not allowed to eat or drink before hand). So I come armed with snacks, and juice. Once they are sure he is awake and well, we are sent on our happy way.

It doesn’t get any easier seeing your child lying there unconscious and  helpless….

All in the day of a kid with Cancer.

Update

We have really been enjoying our time at home. Especially Ezra and Rowan. Its interesting to watch how the relationship between the two of them has changed.  Children are so much wiser than we give them credit for.

Rowan has taken up caring for Ezra, he will bring him snacks, and juice, and help hold his medicine ball when Ezra walks around. They really love each other.

Ezra has been so busy playing. The stiffness in his legs has gone away and he is getting around great, there is still a little limp, but it is drastically better. Him and his brother spend hours playing , its so great to see. They both needed a detox from all the TV they  watched over the last month.

As for the medical aspect to it all, he is still taking a ton of drugs. We are now in the phase of his treatment that they call “Consolidation”. We have to give him antibiotics 4 times a day, 3 of which are on 8 hour intervals. These are the little medicine balls we hook Ezra’s PICC line up to. We will be giving him those until they think his wound has healed up enough.

On top of the antibiotics he receives oral medication as well. He gets oral chemo (6MP) every day, different dose depending on the day, he gets Septra (another antibiotic) on Friday, Saturday, and Sunday. He also takes an antifungal daily to prevent yeast from growing, from the antibiotics , I think. He really hates taking all of these oral meds, but we get them in there.

My husband is also changing the dressing on Ezra’s wound (from his incision) every day, from where they removed the port. That is probably the worst part of Ezra’s day. It is really gross looking, since the infection was inside of him, they want the wound to heal from the inside, out. So they basically left it open. Its about the size of a quarter, which Anthony has to put packing tape in to every day. As soon as it heals shut I think he will get another port put back in.

 

He is losing more of his hair and his chubbiness daily, he doesn’t seem to care though.

This picture was taken just a few days after the one above, and you can see his face slimmed down some from then, and more hair fell out.

I can’t even put into words how great it is to be out of the hospital, and back to a semi-normal routine and life. Its almost easy to forget about the cancerous elephant standing in the room.

You can read about our 4th of July here.