It's been a little over two months since Jonathan's diagnosis was confirmed as neuroblastoma - a childhood cancer. It's the middle point of his chemotherapy treatment and it's great to be in the middle. It would have been much better if we were at the end - if I could have fast forward time - but that exists only on the movies.
Jonathan was admitted into the hospital on Friday night (18th March). Jonathan's chemotherapy was originally scheduled to start on Wednesday (16th March) but due to late scheduling of his tests - his admission into the hospital and starting of his treatment got postponed. During the week (15th to 18th of March), Jonathan got every test 'under the sun'. On Tuesday he got an echocardiogram and a bone marrow aspirate (a sample of bone and bone marrow was taken out by his hip bones). On Wednesday he got an ultrasound. On Thursday he got a CT scan while on Friday he got a bone scan.
On Thursday, for his CT scan, also saw Jonathan getting an NG (feeding) tube. One of the major challenges we have had with Jonathan is his continual refusal to take oral medicines. He is great with everything else - working with his catheter, changing his bio-path, etc... but giving him any oral medicines is a major issue. We know that all the kids go through these issues - and Jonathan's refusal to take his oral medicines is just his way of trying to have some sort of control in these events happening to him. Well - in order to have a CT scan - he has to drink 8 ounces of a 'contrast' solution and that is not a pleasant tasting drink - I know since I've tasted it - I'm in the habit now of tasting all or most of Jonathan's medicines. On that day we had forced about 4 ounces of the contrast and he threw it up - so we knew then that we had to get the NG tube. His tube goes through his nostril - all the way into his stomach. So we can administer either his medicines or liquid foods without having to force him or have him taste it. During the first attempt to put the NG tube - Jonathan was throwing such a tantrum that his finger got hooked on the tube and he pulled it completely out (ouch). So after trying (unsuccessfully) to give him the contrast orally - they put the NG tube down his throat a second time. This time they were successful. Would you believe it took four nurses to hold down Jonathan for this procedure? That's to tell you the amount of spunk that my son, Jonathan has in him.
I must say I was rather proud of him that day. He did the CT scan without have to go under anesthesia. He lay down on the bed and stayed still the entire time - Gabby says the scan took about 5 to 10 minutes. A rather big achievement for Jonathan - given that he can hardly stay still - unless something is wrong with him. Unfortunately, for the bone scan on Friday he had to go under anesthesia. He was doing well - until we told him he had to take off his out jersey. He was so upset - but the nurse upstairs told us he would have to take it off. Imagine our surprise when preparing for the test that we were told he could put it back on! We could have avoided upsetting the boy - but it was too late. Once Jonathan gets upset he remains in that mood for a while - so in the end we relented and he was put to sleep.
Although we were admitted on Friday night - we were a bit surprised to get in because during the day we were told that there was a waiting list with about five other patients ahead of us. Of course I (gently) reminded the nurse that Jonathan was originally supposed to start his treatment on Wednesday (hint, hint). In any regards, we were on standby for a bed on Saturday night. Imagine my surprise when we got a call around 6 pm on Friday night to let us know that a bed would be available around 8:30 pm.
I would estimate we finally got into the hospital around 10 pm and settled down by 11 pm. The entire troop (family) went - so Arielle, Gabrielle and Gabby's mom - because Gabby wanted company to drive back home - since it would have been very late and she was very tired. Jonathan's hydration started around 11 pm and continued for two hours. He started to receive his anti-cancer around 1 am on Saturday. This third round saw him getting two different anti-cancer drugs - Etoposide and Cisplatin. Fortunately these drugs go in over a 1 hour and 2 hour period respectively, unlike the previous drugs that went in over a 6 hour and 24 hour period. Fortunately, too, these drugs did not cause mouth sores, like the previous drugs, but these drugs cause more damage to his liver and causes more nausea - even lasting up to five days after the administration of the anti-cancer drugs.
I spent the first two nights with Jonathan - and those days went fairly well. Like the previous cycle - we had him on three anti-nausea medicines around the clock. Unfortunately, as each day passed - he slowed down - until on the third day he had his first episode of throwing up. By his fourth, and last day, Jonathan had threw up multiple times and was on four anti-nausea medicines. Jonathan was released from the hospital on Tuesday - the fourth day and during the drive home he threw up as well - fortunately we had a container with us so no mess in the car.
It's Wednesday - the day after the hospital - and Jonathan has thrown up multiple times during the day. He is weak, does not move, does not talk. He spends all his time lying in bed - looking around or looking at TV (if he is in the living room). We have to start back giving him his G-CSF shots and I'm not looking forward to it. I'm hoping his pain and nausea feelings go away quickly and he starts feeling better so that we can have some play time together.
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