How I love transportation service!

Transportation service is a great thing...
It enables those of us who cannot obtain a drivers license due to bad eye sight etc, to get to certain places we otherwise wouldn't be able to go...and at a reasonable price at that...
In theory that is...
We set up our trip to the airport several days ahead of time, and due to earlier bad experiences we also called them back yesterday just to make sure that they had actually included a car seat in our booking this time, which they assured us that they had.
It's just that the driver still showed up without it.
they had in fact booked our trip with one of the vans which cannot secure a car seat correctly, and therefore obviously shouldn't transport children. The guy couldn't help us out, as much as he was willing to go over to the office and pick up one of the car seats.
He called the ones responsable for the booking, and tried to get them to send another cab over to get us, but their instructions to us was to call a regular cab and just ask for the money back later.
Except when I called the company they had instructed me to call, it turned out they do not have car seats.
It took 55 minutes before we had managed to sort out that mess and had a cab with a car seat in front of our house, and another 10 minutes or so before the driver had figured out how to secure the darn thing, which of course meant that we missed the plane...
We're just lucky that we could get tickets for another plane this evening, or I don't know what we could have done to get to the hospital in time for our little guys intra-arterial chemotherapy treatment tomorrow. But we're here after all, and our little miracle is
sleeping soundly here next to me. I guess I should try to follow his example. It has been a long day for us all.

I spoke too soon

So last time I was talking about how there had been no side effects from the treatment, and last Saturday my little one was admitted to children's with a fever, and with a low neutrophil count. I guess in all fairness we can't be sure if this was caused by the IAC, and as far as side effects go, they were still pretty mild. He has been through much worse...

He wasn't officially released until Wednesday, but we went home the next day, and all we had to do was to come back for blood work.

He's EUA was scheduled for Wednesday, and was almost canceled twice. The day before it was time to hopp on the plane and make the trip to the eye hospital, and yes, you read that right, we have been granted promision to fly instead of taking the train during the time that he will receive intra-arterial chemotherapy. There's a significant difference between the 6 hours it usually takes us to get home, and the 2 hours or so that it takes us now. The transportation service screwed up on the way home, but even with the 45 minutes extra that cost us, it was totally worth it to get home that much quicker.

Alex can unfortunately not come with us as long as we're flying, as we cannot aford his tickets, but he did alright here at home. I had dinner prepared for him, and it was really just a matter of him staying here one night on his own, so I'm thinking it will probably be good for him. I just don't like being so far away in case he needs me.

But I was talking about neutrophils weren't I...

On tuesday our little superhero's neutrophil count was 0,5, and we would not have been able to travel had it dropped any lower than that, so we did a last minute check-up on Wednesday morning just to make sure.

The Dr gave us the green light to go, as J's neutrophil count remained the same as the day before. I wasn't happy about bringing him around other people, as he was right on the edge, but had to agree with the Dr that being able to see the results of the IAC, and plan for the next treatment should one be necessary had to take priority.

The EUA was almost canceled anyway though, as the oncologist had emailed the ophthalmologist and told her that our little guys ANC was low and that he was admitted to children's with a fever. Apparently he had not received an update from the hospital here in our city, so he did not know that our prince was feeling a lot better. This kind of confusion is enevitable when 3 different hospitals have to be involved at the same time.

Once we had gotten that sorted out, we figured that everything would be on the up and up, but when we called in that afternoon to get his check-in time for next morning, his name was not on the list. This meant that we had to check in at 8 o'clock. At that point they had fixed the problem, but our little guy was number 3 on the list, and the earliest we could count on getting up to the OR was 9:30. This later turned out to be more like 10:30, as one of the kids needed an unexpected treatment, but we're getting use to playing the waiting game.

Our little prince got very upset towards the end, but he had fun for the most part while waiting, and had me push him up and down the hallways on the tricycle so many times that I lost count. I suspect that he wants one for his birthday next Saturday, but I'll put my foot down on that one. He can have one when his little feet can reach the pedals, not before.



The EUA did not turn out as we had hoped. The tumors in our little superhero's eye looked exactly the same as last time. This did of course mean that there had not been any tumor growth, but that is far from enough, and another treatment has already been scheduled for next week. So much for no treatments during the week leading up to my miracle's birthday... I'm so tired of the way cancer keeps interfereing with our lives. All I can do is hope that he will have the energy to enjoy his big day anyway.

The oncologist called me Thursday evening, and in his view the treatment had probably had more effect than we gave it credit for, as there were 3 weeks between the EUA and the IAC, and we could probably count on that things had gotten a good bit worse at that point. Especially if we consider the rapid change in the 3 weeks from the EUA were things looked semi-alright, until the one where the tumor seeding had gone viral.

I had already been thinking along those lines, but it was nice to hear it from the oncologist, and a little bit of my hope was restored with that phone call.

As of right now, we still have to wait for his Nutriphils to surpas 1,0 if the treatment is to take place, but it was 0,9 this past Thursday, so I'm hopeful that it will be back where it needs to be when we go in for tests on Monday.

Aftermath of our little guy's first intra-arterial chemotherapy for retinoblastoma

As far as aftermath of the intra-arterial chemo that was delivered to our little tough guy's right eye 8 days ago goes, I'm glad to be able to report that thus far there is none. That could change in a few days, I know, but mean while we're doing our best to enjoy our freedom by taking him to the park as often as we can. He loves everything about it, and especially the swings.

We took our little superhero in for a CBC this past Monday, and I don't think it has ever come back looking so good before. His white blood cell count was 9,2, and neutrophils were above 5; imagine that!

Yesterday it was time for another check up, as he was exactly a week out from Chemo,and as it was a holiday over here we had to go to the children's ward instead of the day time ward. We almost missed the appointment too, as B was trying to be nice, and decided to let me sleep in. He got confused about the appointment as we generally wouldn't have one when the day time ward is closed. They were taking today off as well however, and me and J's nurse made a mutual decision that it would be too long to wait until Monday.

It was Stress central here when I woke up and realized what time it was, but it worked out alright in the end. They had a lot to do over there anyway, so we had to wait when we got there just the same.

The nurse did not call back with our superhero's results yesterday, so I assumed that he was nowhere near neutropenic, but I called in this morning just to make sure. His counts are down a little bit from Monday, but he has a long way to go for them to become dangerously low. Neutrophils were 1,6, so they're still looking good. We're Breathing a sigh of relief for now, and hoping for equally good results when we bring him in for tests after the weekend. He has a little bit of a cold, so now is not the time for his ANC to dip. Thank you, as always for supporting us, and for hoping right along with us for good results. Love and light to everyone.

Starting intra-arterial chemotherapy

Our little superhero received his first round of intra-arterial chemotherapy on the second of May 2013, after the doctor had assured us that the risk of a blood clot forming a block due to the surgery was only about 0,5 percent. I had also had a talk with the ophthalmologist, and in her opinion we didn't need to worry about secondary cancers, as the dose of chemo drug spreading beyond his eye to the rest of his body would be extremely low.

The procedure took 3 hours, and was from what the doctor told us, rather uneventful. He had a little bit of trouble finding a catheter fit to enter the artery in our little guy's groin, but once that problem was solved it all went according to the book. Once it had been determined that joshua's vesels were in a suitable pattern for the treatment, the chemo drug ( in this case Melphalan) was injected at one ml per minute during 20 minutes, and hopefully it is right now killing off all the tumor cells in our little hero's eye one by one.

He got out of surgery around 3:30 PM, as they had not been ready to start until 12:15 or so. It was originally scheduled for 10 o'clock, but the doctor came and talked to us earlier that morning, so he had already prepared us for waiting at least until 11.

Our little tough guy didn't seem to mind much however, even though he didn't get any breakfast. He did complain a lot about being thursty. But the fishes in the fish tank:



the bobbycar:



The clowns who showed up to entertain all the children, and perhaps especially the baloon sword they gave him so that he could be a real superhero and win his battle:



all combined to keep his mind off of the unplesent part of it all.

He didn't get especially upset when they put the IV in either, even though he was still black and blue after our stay in the hospital the week before. They actually realized that they had forgotten to draw blood for his coagulation study and wanted to try to put in the IV without even waiting for the numbing cream to have effect, but his dad put an end to all such thoughts and had them get an anesthesiologist to do it right from the start. There was no reason for the nurse to even try when all the others had failed thus far. It proved to be a working strategy, and though he got a little bit upset when he realized what they were going to do, he quickly calmed down again when they didn't hurt him this time.

It all made for a very long day, as we spent 4 hours in the recovery unit after the surgery. They had to have a so called safe guard in place in Joshua's groin to prevent bleeding. It could be described as a bandage with a built in baloon, which allowed it to put sufficient pressure on the artery to keep it from bleeding after the catheter used to inject the chemo drug had been removed. The baloon was deflated after 2 hours, and there was no bleeding at all, but we had to leave it on for another 2 hours just in case, as it could quickly be inflated again should the need arise.

The only side effects of the chemo surgery was a rather persistent nausea, along with a few spells of cold sweats, which in the end had to be remmodied with anti-nausea medication (Zofran).

I've never seen him get sick like that. I couldn't pick him up while we were in the recovery unit, due to the "safe guard" and the risk of bleeding, so I was laying down with him on the bed so that I could hold him. The nausea seemed to hit him out of nowhere every time, and several times he barely had time to wake up. I still don't understand how I managed to get out of the way time after time. The bed was a total mess, and as we weren't allowed to move him much, they couldn't change his sheets. They just kept slipping new changing pads under him to cover up the mess. It was totally disgusting!!!

They couldn't or at least wouldn't give him any anti-nausea medication while we were in the recovery unit, and his bed was in need of some serious decontamination by the time we got back to the pediatric oncology ward. Especially since he pead on it as well for good measure, as he couldn't wear a diaper while he had the "safe guard" on.

I have to say that I'm glad that he didn't get like this during his treatment a year ago, and that it is intra-arterial, and not systemic chemo this time considering the situation. We don't know how much of the drug that escaped and got in his body fluids this time, but we can at least be sure that it was nowhere near as concentrated as it was when he received the systemic chemotherapy. Keep in mind that we were suppose to wear gloves even for changing his diapers last time.

He kept getting sick after we got back to the ward as well. We asked for medication for him right away, but it took a while for the doctor to proscribe something that he could get in his IV. There was little sense in giving him something that would come right back up again. He only needed medicine once though, and after that he slept good all night, and only woke up occasionally to ask for his milky.

we were discharged from the oncology ward the next day, and he dealt with the long trip home like a champ, even though the train was late so that we missed our connection in Lund, and had to wait over there for an hour before we could catch another train and go on home.

He had a low grade fever Saturday night, but we spoke to the oncologist on call, and were told that he should be checked by a doctor, but we could wait to take him in until morning as long as the fever didn't go up.

The next day it was gone completely, and we decided to wait until today, and take him to the day time ward instead. They wouldn't have given us any kind of priority at the ER, and as we have spent 12 hours waiting over there at times when he has had a high fever, I don't fancy our chances of getting out of there before Christmas should we come in with no fever at all.

Unfortunately we did not receive any kind of plan for the future before we left the children's hospital. All they told us was that we would have to ask the ophthalmologist. IAC is a fairly new treatment, and has not been used much, if at all here in Sweden before, so they have no routines set up for it yet.

We heard back from the eye doctor today, and she wanted to see our little guy at the eye hospital for an EUA next week. If she decides that there is need for another round of IAC, it will be scheduled with in 2 weeks from that day, as they have to give the follow up chemo with in 4 weeks from the previous treatment.

Nobody here is looking forward to making the 6 hour trip one way every other week, but you gotta do what you gotta do...For the time being, all we can do is to try to take life one day at a time...One treatment at a time.

What's the going rate for vision?

It has been an emotionally draning week, and it is with a heavy heart that I sit here and write this post. In 5 weeks, our little superhero will be turning 2 years old. We had planned on taking him to the zoo that day, as he loves animals, but at that point he will either be blind in one eye, or we will be on our way back from the hospital after his second round of intra-arterial chemotherapy (IAC).

It is not the kind of decision regarding his future we thought that we would be forced to make at this point, but perhaps there's no way of preparing for it, regardless of when it occurs.

Last time they seemed to have things under control, but this past Wednesday our little superhero's EUA showed that The activity in his right eye had exploded, and there were several new lesions, including one in the vitreous body, which is impossible to treat.

The doctor gave us 3 options:
Intra-Arterial Chemotherapy (IAC), Enucleation (removal of the eye), or external beam. Pretty much recommended to us in that order.
I don't know much about IAC, it has not been an option here in Sweden before, so there is no one to ask for advice. I have read about it being used in other countries, and I posted to RBMoms, to ask about other family's experience with this, but as always with this cancer, there is no unified answer, as it behaves differently in different children. There have been successful results in certain cases, but some of the possible side effects are just mind numbing. At the same time the doctor believes that he has pretty good vision in his eye, so it is difficult to just throw that away and go for Enucleation.
Still, I sit here and ask myself how much vision is worth. I know that all sighted people think that their life would be over if they lost their ability to see, but I'm definitely not the right person to talk to about such nonsense. Vision makes life easier, there's no doubt about that, but it is not a necessaty to live an independant, fulfilling life. Why should we put him through more painful treatments and increase the risks to his life both from possible complications, and by using a method that will increase the risk of secondary cancers even more than what's already been caused by the initial systemic chemo, and of course, by the gene mutation that caused the retinoblastoma in the first place.
There's no right or wrong decision here, since we can't know the outcome, but regardless of what we decide to do we have to act quicly now. They called from the pediatric oncology ward yesterday, and he is scheduled for the so called chemo surgery this upcoming Thursday. It seems like such a huge step in the wrong direction to head on back there when we were so sure that we had left that part of his treatment behind us. It is a place which holds few happy memories for us...