Wednesday, August 20, 2014

All Grown Up

My Little boy is not so little anymore, and he isn't called Super Joshua for nothing! He had a hearing test this morning, and when the audiologist asked him if he wanted to sit on mommy's or daddy's lap during the test, he simply declared that he could sit in his own chair because he is 3 years old. Then he bravely marched on up there and Went through about 15 minutes of testing all by himself...
We're not seeing the doctor until next week, and she will be the one to discuss the results with us, but the audiologist said that he did very well over all. She did have to turn the volume up a Little bit for him to hear the higher frequencies, but she didn't seem any too concerned about that, since he did well on his hearing test last year. I'm not overly worried about it either. The test does require a lot of focus, and though Joshua seemed to be trying really hard, he has been tired all day today. It's easy for a 3-year-old to get sidetracked anyway, but even more so if one stayed up late the night Before because one's Little cousin had a birthday party... We'll just wait and see what the Dr Thinks about it all next week...
For now, I'm just going to keep being proud of my independent little man, and enjoy the fact that he was 14.9 kg (32.85lb) on the scale today, and had grown to 100 cm (39.4 in) exactly.

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.