It's been 2 weeks since the eye doctor walked out of surgery and told us that she suspected our little miracle to have retinoblastoma, a rare form of rapidly growing malignant eye tumors which can also spread to the brain and bone marrow...
2 very long weeks...
I think of the day a few months back when the thought of putting our little miracle through just 1 EUA, had me terrified and, the many sleepless nights I've had since another eye doctor told me about the likelyhood of me passing on the gene mutation and, that there would have to be about 30 EUA:s done between now and his 8th birthday.
This is when I realize that it all comes down to perspective...
In the past 2 weeks he has had 2 EUA:s done:
One where first suspicion of the eye cancer was raised and, another, on Friday the 13th out of all days in the calender, which confirmed what the first eye doctor had said, just like we knew it would.
She called me 2 days after the first examination, just to make sure that the hospital in Stockholm had contacted us and, also to check on us and, to see if she could help us by refering us to counseling or the like. I asked her straight up if the changes she saw in his eyes could be anything but the Retinoblastoma. She said that she was not allowed to say, cause the second EUA done, to find any possible metastases in his brain or bone marrow. For the same reason, a bone marrow examination and, a lumbar puncture was also made.
On top of that he had a portacath, the main form of a central venous access device, inserted so as to avoid damage to the smaller blood vessels and, skin and mussel tissue during the Chemo therapy. With the portacath one is now enabled to deliver the drugs quickly and efficiently via the circulatory system.
After all this, which by the way took 4 hours to complete, he also required a blood transfusion, since his red blood cell count dipped to 70 during the surgery.
Next up he also had to have a x-ray of the lungs, to rule out that the portacath had in any way been placed so that it could injure the lung and, when the x-ray confirmed this he was all set for his first round of chemo therapy.
This was around 8:30 PM Monday night, but the doctor on call for the evening still thought that we should just go ahead and start the chemo treatment. The nurse however disagreed. She thought it'd be better to wait until morning when there would be plenty of doctors around, since it would be his first cycle of chemo therapy and, one couldn't be sure how he would react.
They asked us what we'd prefer and, we of course said that we wanted to wait until morning, but then the doctor said to just get it started anyway, which makes me wonder why they asked in the first place. There would be no chemo that night anyway though, cause wouldn't you know it, but his chemo drugs somehow came up missing, which the nurse calmly stated was "for the best"...
The chemo was administered during Tuesday and Wednesday and, little peeper didn't complain half as much as an adult with a cold. He is so brave my little miracle!!!
Through it all I must say that I have been surprisingly calm. I was more upset before we actually got to the hospital and got everything explained to us. Even when the news are terrible, it is always better to know what's going on.
That doesn't mean that I haven't cried and, I almost lost it when they had him in surgery for 4 hours, even though the nurses said that this was quite normal. But I later found out that he had been awake in between the examinations.
It makes me extremely sad to know that he was awake and, that we weren't there to comfort him. They told us that it's standard procedure not to call the parents down to the recovery ward until they are done with all that needs to be done, but I would have been there had I known.
You know that he must have cried for me and, it's unforgivable to let him lay there in need of and, calling for his mommy and, not let me answer that cry when he's waking up confused and hurting among strangers; I could kill them for that!
Still, this is the pediatric oncology ward and, we are among the lucky ones here..
Alex and B, who have been in and out of here to go to the store and such, have seen parents take their suitcases and leave without their children. There's a heartbreaking explanation to that which I can't really bear to think about right now.
This is a place where a good prognosis such as little peeper's gives new meaning to the word " gratitude"
he's got tumors in both eyes, but they are small and, far away from the optic nerve, which makes it hard for them to spread to the brain. More over, they should be easily murdered and, he will by the look of things right now, even get to keep enough eye sight to be able to drive a car some day in the future.
The MRI confirmed that there are no metastases in the brain and, no signs of Pinealoblastoma or trilateral Retinoblastoma, tumors of the pineal gland. This is extremely rare, but sometimes develops along with tumors in both eyes, bilateral Retinoblastoma.
The lumbar puncture confirmed that there are no strangely active cells in his cerebrospinal fluid.
We haven't gotten the results for the bone marrow samples that were taken from his legs yet, so as of right now, that is the darkest storm cloud hanging over us. Everything else we can deal with even though it's difficult, but the last thing he needs is complications. The battle of conquering cancer is much greater than what any baby should have to fight anyway.
The reason for me being so worried about metastases in the bone marrow is that I took him to the ER just 2 days before we left for Stockholm, because of a strange lump on his head, which has turned out to be nothing at all, but during that examination they also took some blood tests and, both his red blood cell count and his white blood cell count was too low, so it's no wonder they dropped during surgery. This could, at worst, indicate that the cancer has spread. If you pray, please do so... If you don't; please send him healing thoughts...
He has been wonderful throughout this whole ordeal. He is so incredibly patient and calm, even when they're poking him with needles, keeping him on the IV for hours and hours, so that he's not allowed to move around and play and, even now, after the 8 hours it took us to get home, during which he has refused to eat the whole time, he is super good and, has mostly just played and slept.
We didn't see our regular doctor when he was released from the hospital and, the woman who showed up instead claimed that he wouldn't be needing any medications when we got home. This is incorrect, I know that it was said that he would need medecin against nausea among other things. One of the drugs in particular, Vincristine, has really bad side effects, but the etoposide is not exactly a dream to deal with either.
Nausea, pain in the jaw, legs or arms, Blisters in the mouth, and, or, altering of flavor experience, making sugar taste bitter or salty, are just some of the things he may have to deal with.
I'm no doctor, but common sense tells me that a little baby neither can nor shall be expected to deal with such things without help...
He has eaten a little bit now, but I'll have to take him straight to the ER if he doesn't want to eat next time he wakes up. I contemplated taking him in as soon as we got to the station, but he had just had a wet diaper, so at least he's not dehydrated and, I thought just being in the calm environment of our own home could help make him feel better, but we'll see...
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