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Uriah's Fight Uncategorized Chemos, Stem Cell Harvesting and Neutropenic Fever

Chemos, Stem Cell Harvesting and Neutropenic Fever



Broadcasting live from the hospital: Unplanned admission for fever while neutropenic (that means no immune system/white cells basically)

Ok, I’ve been bad about posting updates. I’m going to do a brief overview of what’s been going on.

Last post, we we’re prepping for chemo round 3 and birthday.

Let’s see… So, chemo round 3 got pushed back by a couple of days due to hospital logistics. Uriah’s grandfather (me, Mama’s father) had planned to come up for the birthday. He did that anyway but we ended up being in the hospital for the whole time.

In a way, that kind of worked out well. Grandpa (we call him Opa) was able to stay at Ronald McDonald house and take the aerial tram up to the hospital to come be with us. He got in while we were admitted and went home the day after Uriah’s birthday.

Valentines Day in the hospital.
Fun with paint and Opa in the wings.
Uriah told Groot “I can’t see you in there” and when we said “he’s a tree,” he touched him and said “you’re rubber.”
The handsomest little super hero!
He’s so cute!

Chemo went pretty well

Chemo wasn’t too bad in the hospital. It was a course with a particularly nauseating drug in it, so they added another anti nausea med. Uriah only threw up a couple of times in the mornings while we were at the hospital.

For the most part his spirits and energy were really high and he got to hang out with Opa a lot.

Dad got a cold while we were there so he had to leave and go stay at Ronald McDonald house and couldn’t come back. He also couldn’t come back for Uriah’s planned in-hospital birthday celebration.

So everyone knew…

Birthday Celebrations

Luckily, Uriah was doing so well that we were able to discharge early afternoon on his birthday after a quick “Happy Birthday” song and looking at the cake that was arranged to be delivered by some generous friends. That was great, because we couldn’t even do candles… and birthday cakes and songs aren’t so fun without candles when you’re a kid on chemo who doesn’t really have any interest in eating the cake. Plus, Dad couldn’t be there.

Happy 3rd Birthday!
Birthday presents!
Fun tattoos from “Hope Vs Cancer” charity.

So we packed up and headed down to Ronald McDonald house where we opened some presents and had a mini party with a friend and all family present. Uriah had a really good time.

Look at that cake and that smile!
Presents at Ronald McDonald House
Lots of The Very Hungry Caterpillar gear!

We followed that by driving over to our family in Portland’s house for another mini party, as they had also gotten Uriah a cake!

Someone got surprised with a SECOND cake!

So Uriah ended up having 3 small parties, ate no cake, and got lots of hungry caterpillar gear and kinetic sand.

Daddy made Uriah a chain saw… just like Daddy’s!

We were exhausted after that and I was beginning to feel the effects of the same cold that had gotten Dad a few days earlier. Opa left the next morning.

Everyone got sick

On top of the cold that me ad Uriah both ended up getting, the nausea really started to hit Uriah that next day out of the hospital.

Small friends
Cool dude in his eye protection, finally enjoying a warmer winter day.

It was a bit rough and we mostly hid out managing nausea and trying to get food in. Uriah ended up needing fluids for dehydration, as well has his first transfusions outpatient.

Stem Cell Harvesting

Between rounds 3 and 4 was our time to harvest Uriah’s stem cells to prep for his high dose chemotherapy and stem cell rescue after chemo round 7.

So, starting the Sunday night after we got out of hospital, we had to give him nightly injections to get his bone marrow to pump out lots of stem cells and white cells.

That was not fun for any of us. Getting the medication was a logistical fiasco that resulted in high level hospital administrators getting involved and eventually got sorted out. What a mess and medical not talking to prescription and.. well.. I’m a pharmacist and this was still utterly ridiculous.

When we finally did get the medications by mail… it came as single use injections. The dose that Uriah had to get was so small that the injector couldn’t do it on it’s own, which resulted in more madness for the hospital pharmacy to have to fix even though they weren’t involved in filling the prescription. So crazy. Such a mess. I’ve made complaints.

Anyway, Uriah, poor guy, picked up on that injections happened at bedtime and started doing whatever he could to delay going to bed. And waking up crying “no poke no poke.” So, on top of everything else, and us as parents wanting to be the people who never hurt and only comfort, this was really sad for all of us.

First Transfusions and Harvest Prep

The end of the first week after chemo 3 Uriah needed his first platelet transfusion. This was to prevent what could have turned into a bleeding emergency over the weekend if he started to get bloody nose or hurt himself (not far fetched for a 3 year old). And, he ended up have a mild allergic reaction to that.

Transfusions.

Starting Monday of the second week post chemo we we began checking counts in the clinic daily to see if we could safely harvest the stem cells. Wasn’t ready Monday. Wasn’t ready Tuesday, but did get another platelet transfusion.

The procedure to check if he was ready for stem cell harvest takes a couple hours each day. On Wednesday he was finally ready for stem cell collection.

We prepped for that and Uriah got some additional red blood cells transfused (he needed them and the machine takes so much blood out during the process that they need to give extra).

Stem cell harvest machine – attempt one (ended in failure).
Almost always in good spirits this one! Stem cell harvest prep and machine in background.

That’s where things went a bit off…

Not sure I mentioned at any point, but the central line that goes in through Uriah’s chest to deliver his chemo-therapies, take blood etc., is a bit kinked in his neck where the line snakes down to his main blood flow.

Then nurses noted right after it was placed in December that it was a bit “sluggish.” So much so, that we even got an additional set of x-rays that confirmed it was kind of bent.

No one could tell for sure if it would be a problem or not. But, since it’s been giving blood and taking chemo fine, we’ve left it alone.

We did ask when it was time to prep for stem cell collection if the kinked line was going to be a problem. We knew this machine, which is kind of like the machines that they use to harvest plasma from donors, needs a high rate of flow and you have to sit in certain positions etc. to keep the flow going.

When asked, we got kind of confused looks from the medical staff, and a “we’ll just have to see” and that was that.

Lo and behold, that kinked line WAS a problem and resulted in a string of confusion and mess. The nurses who tried to get the blood flowing through the machine collapsed the central line putting too much pressure on it and declared that it had “failed.”

Avoiding an Unnecessary Procedure

There was a flurry of activity and they informed us that Uriah would be admitted to get a temporary catheter in his neck to complete the harvest (a surgical procedure under heavy sedation). And most likely he would need to get a new central line put in too as this one had suddenly failed.

So they sent us down to interventional radiology and the radiologist couldn’t even get the contrast to inject under the fluoroscope. They were trying to determine why the line had failed… was it a clot? Something else? Depending on the problem we would know if needed surgery to correct.

The radiologist said that the line was failed due to the severe kink. We had him compare that to the images from the x-ray in December and he said that it looked exactly the same as before. This had us suspicious.

When we got up to our normal oncology unit I asked the nursing staff to see if they could get fluids in and blood out… which they could. I then demanded to talk to our medical staff, informed them the line had not FAILED… it had just failed the flow rate needed for the stem cell harvest machine. They agreed after that, that a new line was NOT needed.

Parental Advocacy

My thought here was, these lines can fail at any point and may need a new placement. And new scars and a new puncture to the chest wall. Sure, it might have been nice to get Uriah’s finicky line replaced while he was under general anesthesia, but why submit him to a currently unnecessary procedure? More pain, more healing time, etc?

So we waited the night and he went down to get that done the next morning. Immediately after waking up and getting back to the room the came up to complete the stem cell harvesting procedure. Uriah took it like a champ.

A Successful Stem Cell Harvest

Let me back up here and explain a bit more about this procedure. The plan had been for us to come in daily for 2-4 days for the harvesting. Rarely do they get it all in one day as they can only filter out so much blood and there are only so many cells produced daily.

Harvesting stem cells!
Just out of surgery and hooked to a machine and still a joy.
12 million stem cells!

They also collect enough cells to provide 3 stem cell rescues at the child’s current size… planning for the potential of future treatment relapses.

So, we were quite happy to hear that they got everything in ONE day… and they also got DOUBLE the amount of cells that they needed.

They needed to harvest 6 million stem cells from Uriah, and we got 12 million. So, enough for potentially three stem cell rescues, Uriah would get back double the amount of stem cells that he minimally needs. That’s great

Extra, Extra Hospital Days

Unfortunately, in the complex machine that is the hospital, they couldn’t get the temporary catheter taken out of Uriah’s neck that day, so we had to stay another night so they could take it out the next day.

More logistical mess ensued… they said he would just get light sedation, which means he could eat (or get his tube feeds), which he did all night. Then, the person performing the procedure the next day decided that he would need full sedation.. meaning he couldn’t eat for 8 hours.

Uriah got to wait another 8 hours (angry and hungry.. let me tell you, it is NOT fun to tell a hungry toddler getting his appetite back after chemo that he can’t eat!) to have the catheter taken out. By the time he woke up from sedation we were finally leaving, at 7:30 pm.

Sheesh.

So what we thought would be an outpatient procedure turned into being there from Wednesday at 8:30 am to Friday at 7:30 pm.

A Little Fun!

Over the weekend we had been gifted ticked to master trucks by the hospital, so we took Uriah to that. He had fun and refused to wear his earmuffs! But it was late and he was tired, so he lost interest within about 30 minutes. That was an interesting excursion. As parents, we’ve developed a pretty good case of agoraphobia due to germs and infectious risk. Being right next to a measles outbreak in Vancouver isn’t helping things.

Monster trucks!
Grave Digger skull bubble blower from Monster Jam monster trucks.
Uriah really likes his princesses.

More Chemo, Round 4

Four days later we admitted for chemo round 4 on March 5th. We seem to be keying into Uriah’s anti nausea regimen and needs. We were so glad that he didn’t have any (obvious) nausea and no vomiting during this admission. That was a first! He did pretty well outpatient for the first week too!

Some winter fun, and a little exercise.
Swings have ALWAYS been his favorite.
He makes quite the handsome Dr.
Dr. Uriah, showing off his Dr. badge.

Home At Last!

Side track to family life here: Me, Mama, got a one day a week job in Portland starting.. soon. I had to go home to get proper identification documents (it’s not like I came up to Portland expecting to need to find job and I hadn’t been home since 12/24/18). After round 4 of chemo was also what we had decided to be our “sweet spot” in finding some time to go home. Nothing big would be going on between round 4 and 5. Whereas between round 3 and 4 we had the stem cell harvest. And coming up between round 5 and 6 we have planned tumor resection surgery.

Home on our brief visit.

A week after discharge Uriah seemed pretty dang good. So we headed back to the coast after our Dr. appointment and our team cautiously giving us the ok to travel more than an hour away. The risk being, not much immune system and levels still declining after the last chemo round. But, we’d been ok so far so we decided to go for it.

It was bittersweet to be home. But I’m glad we did it. Uriah seemed SO normal for the whole day we had. And our friend who has taken the dog Hank into her home (after trialing having him at our house and having her come visit.. except Hank started to pee on the rugs).. brought Hank there so that he was already relaxed when we arrived.

Uriah was so happy to be home, and had a great time revisiting all of his toys and books. It was really sad to have to leave.

At home with a fever coming on, but nothing like your own bed.

But, I’m glad we planned to leave when we did, as Uriah was clearly a bit off that morning and slept much more than his (already a lot) usual. I checked his temperature before we finished packing up and it was 99.4.

An Emergency Room Visit… At a New Hospital

Our cutoff for going to the emergency room is 100.4. So we sped things up and got on the road. Our fear was not wanting to have to take him to a small coastal emergency room and then have to come up to Portland via ambulance.

He was sleeping more and harder than usual in the car. We checked temperature in the first coastal town we hit , it was 99.6. I alerted our oncology team that I thought something might be going on and drove a little faster than I should to the next town we pass on our drive, about another hour. When I stopped to check him there, his temp said 100.8 on my thermometer. I called our team back and we headed to that emergency room.

A dose of prophylactic antibiotics and 4 hours later, they declared us stable enough to transport Uriah ourselves, by our car, versus by ambulance the next 2 hours or so up to Portland and check back in with our oncology team.

Another Unplanned Hospital Admission

That was Thursday night. He started to get some more obvious cold symptoms by the time we arrived. So, now we think that is probably all that was going on. He had fevers up through Friday night at about 11 pm. I also think his mucositis both from chemo and the crappiness of being neutropenic (no white counts) is hitting him pretty hard. That’s causing his not eating or drinking right now. He’s just getting food and water from IV and his NG tube feeds. That’s not entirely surprising for these kids our team says.

His nasal swab was clear for influenza, and his blood cultures never returned any growth. But, we’re all still on isolation as he may be infectiuos.

Being on isolation is the worst. We can’t use the family pantry area. Uriah can’t ride his “motorcycle bike” or go to the playroom. He’s basically confined to bed or the window bench and watches a heck of a lot of TV

For us to be able to take Uriah back out of the hospital he has to be fever free for at least 4 hours and his white counts have to show that they are trending up. Having a virus could mean it takes longer for his white counts to improve.

We’re hoping to be out Monday afternoon, but we will see.

Getting Used to the Hospital Routine

We are getting pretty used to being stuck in the hospital and adapting the other aspects of life to that.

The key to coping mentally with this is to set little expectations and make few plans. Don’t think much past the next few days and even then, be ready to change on a moments notice.

Uriah Selected as a CCA Hero for 2019

I really hope he gets out early next week, as we have a plan for a small late birthday party with a few of his baby friends next weekend. And the next day, on have a photo shoot for the CCA (Children’s Cancer Association), where Uriah has been selected this year as one of the CCA heroes for 2019. Only 12 children are nominated and selected, so it was quite a surprise to us when we found out he got the honor.

4 thoughts on “Chemos, Stem Cell Harvesting and Neutropenic Fever”

  1. I hadnโ€™t seen the monster truck photo! So freaking cute. And isolation as an adult would be terrible; itโ€™s gotta be that much worse as a toddler. Ps my kiddo was riding around on that motorcycle bike all morning before we left ๐Ÿ˜‰

  2. Barb A Tanis says:

    I am so sorry that Uriah has to endure all of these procedures and that you are finding yourselves needing to confront the medical community to advocate for Uriah. I feel like that is almost disrespectful of all of you for you to have to tell them how to do what should already be part of their protocol. Putting you in that position takes away time that could be spent with Uriah. It also causes undue stress on the parents to basically fight for appropriate medical care.
    Please know that you are in our prayers and that love and healing light are streaming for all of you. We have a large extended family and distance does not stop the love that is always yours and pouring over you. May angels protect you and heal Uriah. Blessings ! Namaste

  3. Wow, this is all too familiar. Stupid neuroblastoma.

    For the stem cell transplants- really look into it. The first one isn’t too bad.
    But the second- I don’t think they need to do if you are NED. We almost lost my son during that one.

  4. Sharon Cinadr says:

    Uriah is a SUPERMAN!!!!! ๐Ÿ˜๐Ÿ˜ He is resilient and has awesome parents! We pray for all of you every single day! Canโ€™t imagine the struggles, lows and highs! Stay strong……you all will prevail this time.

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