Thursday, April 24, 2014

Test results are still on our side

We Went for Another one of our walks to the hospital yesterday, and both the weather, and the test results were on our side...Neutrophils are almost up to where they should be, 1.6 this time, and his total White blood cell Count was up to 6.5, which translates to 1600, and 6500 if I remember correctly. In other Words, there is nothing that indicates any delays when it comes to treatment on Monday. I still wish we could keep hand sanitizer in our carry-on bag, especially since he woke up vomiting again 2 Days ago, and no one else was sick this time around either...there's just no way to keep him entirely safe...I know all kids get sick...It's just that it creates a world of difficulties and worries when one has to travel to the hospital all the time.

Thankfully, this stomach bug was gone with in a few hours, but the only Place we take him where he could have picked that up is the playground, and fortunately, or unfortunately, depending on how you want to look at it, he almost never plays with other Children over there.

That part about this whole thing hasn't bothered me that much before, but he's to the age now where he should be making little friends his own age, and he has been curious about other little ones for a long time now. It's just that preschool is one of the best places to take him if we wish him to get sick...

Even when we weren't doing chemo, he needed laser or cryotherapy almost every time, and a weeks delay can make a bit of a difference in how much the tumor grows. Last year it had time to send out seeds all over the retina and into the vitreous in 3 weeks time, and just recently he got that ear infection that delayed treatment with a week, and it was the difference between the tumor being available for laser, or not. I just don't know how to give him a "normal" Life in the midst of all this.

Wednesday, April 16, 2014

Ramblings prier to follow-up examination

We're back at the hotel again, and as usual I'm spending most of the night staying true to my ordinary sleepless self. Chances are that hotels will Always be asociated with worrying once we're done with this, but it is definitely a lot better than staying in the hospital.

Earlier today I called and got the rsults of that birthmark I removed about a month ago, and it turned out to be the beginning stages of skin cancer, or I suppose more like a stage Before it actually becomes malignant. The nurse I talked to was very hesitant to give me the results because she said that she "didn't want to scare me", but this is more or less what I gathered from her answer. I'll get a letter eventually with Everything explained, but she said that I could rest assured that everything had been removed with a good margin, so I'll just thank the stars above that I didn't back down when the first doctor didn't want to refer me.

Actually, she was right and I was wrong, cause the birthmarks I originally worried about turned out to be nothing, and the one that I had to remove was one that I didn't even know I had. It's not exactly practical to be blind while screening for melanoma. Oh the joys of the Rb1 gene! Never the less, without that referral, the doctor would never had spotted that other birthmark.

Now I just gotta find someone who can go over all my birthmarks regularely, that is to say every other month...hmm. No problem what so ever with a Child that potentially could become neutropenic, and with all this traveling for treatments and follow up examinations.

Oh well, I shouldn't complain, his Counts have been behaving excelently thus far. Neutrophils were down to 1.3 2 Days ago, and platelets had gone down to 160, but it's really no reason for concern what so ever. His White blood cell Count was still 4.8, and his hemoglobine had actually gone up to 132. It's great not to have to worry as much about his immune system, or lack there of, while traveling this time.

This time however, we were rather busy worrying about the weather instead, but in spite of a landing that took 10 years off my life, We made it here safe and sound. The next time it's windy out there, I'll take the train thank you very much!

Joshua on the other hand was rather enjoying himself, and I have a feeling this kid is going to love roller coasters when he gets older. Even my little superhero had his doubts towards the end though, and said that he wanted the plane to "park and be still."

Joshua didn't have a nap on the plane for obvious reasons, so he fell asleep as soon as we got to the hotel. At that Point it was almost 5 in the afternoon, which in it's turn made for a very late evening here - he didn't fall asleep again until 11 o'clock. We'll be checking in a Little bit later than usual tomorrow though, so he'll get a bit of extra sleep in the morning. It's impossible to keep him on a good routine with all this traveling.

Our Little guy is third on the list in the morning, so we may be in for another long day tomorrow. This time we're actually hoping for treatment though - there's a first time for Everything. It's doubtful that the tumor will be small enough for laser however, but I'm not impossible, I'll settle for continued signs that he's responding to the Intra-arterial, or even no tumor growth, and no seeding.

Tuesday, April 8, 2014

Good test results

New week, new tests. We're 11 Days out from the treatment, and Joshua's Counts are about the same as they were 4 Days
ago. His neutrophils are actually up somewhat.

  • White blood cell Count: 4.8
  • Hemoglobine: 118
  • Platelets: 275
  • Neutrophils: 1.8

Hoping for the best, and enjoying it while we can.

Thursday, April 3, 2014

Back to the blood count routine

Yep, here we go with this routine again - checking blood Counts every week. As Always, Joshua doesn't even seem to notice, even though his nurse Always has to prick his tow twice to be able to fill those test tubes.

He was actually talking to her today, that's a first. Most of the time he' won't utter so much as a sound the whole time we're over there. Kind of strange since he gladly gives other nurses instructions on how to do stuff correctly. I guess he figures she doesn't need any...

His blood work was excelent today considering the circumstances. Hemoglobin and platelets were fine. His White bloodcell Count has started to come down a little, but the neutrophils which are doing most of the job when protecting the body against infections were still at 1.5 (1500. A Little bit on the low side, but still under Control. They should be at 2.0 (2000) or above, but Trust me, when one has experienced that they've been so low that they couldn't even be messured,this is nothing to worry about.

We're already avoiding public transit when possible of course, but a bit of extra exercise from Walking never hurt anyone. Hoping for that Lovely spring weather to return soon however, it would make the walks to and from the hospital so much nicer.

We saw the dietitian today as well, as Joshua is still not eating good. He was down to 13.1 kg this morning, and keep in mind that his weight was 14.8 when we checked in at the pediatric oncology ward a week and a half ago.

The dietition said that we'll start him on nutritional drinks and shakes on Monday if he's not doing better by then, but for now she suggested that we give him Cold foods to eat, as the smell of hot food often is what triggers the nausea. We'll try that, and hope that he comes around Before he disappears altogether.

Wednesday, April 2, 2014

Small effects of IAC noted

Joshua was first on the list for his EUA this time, and since the tumor is still too big to be lasered, it was a very Quick thing. We were back in the playroom shortly after 10.

The tumor had grown a Little bit since his EUA 3 weeks ago, but that was to be expected, since they couldn't treat it at all that time, and he only received chemo last Thursday. It did on the other hand appear to be a bit more inactive than last time, which of course is good news, and hopefully proof of that the treatment is beginning to work already.

 He will need more intra-arterial in the near future, probably 2 more rounds at least, and the Dr wants to look at him again in 2 weeks time just to make sure that the effects are closely monitored.

Joshua has been angry as a Little bee off and on since the treatment last week, probably in part because he's still not eating much, and this here did not improve his mood. He didn't want to go on the plane yesterday, he didn't want to go to the hospital this morning, and then, at last, he didn't want to go back home either...and he let the whole World know about it at 10000 Decibel.but who can blame him? Sometimes I wish I could lay down on the ground and just scream as well.


We will take him in for blood work in the morning, but he didn't mind that, at least not when we talked about it, he just wanted reassurance that he wouldn't have to lay on any beds over there, and that he wouldn't have to go to sleep. We'll see how it goes. Hopefully he's not neutropenic this time. There's enough to worry about as it is now that we have to travel so often.