It's a week to the day that we have been in the hospital. I'm amazed that after only one week - we could feel so drained, so tired, so exhausted. I'm shudder to think what it would be like after four to six weeks - when Jonathan has his stem cell transplant in the next 6 or so odd months. I don't know how other parents do it, much less single parent families, but I have a profound respect for those parents. My only wish is that we could have the strength to continue on as other families before us have done and continue to do.
I've been thinking about the how this experience affects my family life. I had a conversation with someone yesterday and I remember saying that Gabby and I have not slept (together) in the same bed for almost 1.5 weeks! I know this does not seem significant - but with all that is going on - we have been apart during this entire experience - since one of us have to be by Jonathan's bedside - there is no way for us to spend the night together.
One of the things that they encourage at Stanford is for the parents to be actively involved in their child's care. One of the reasons is that this is a long road - his active care lasting about 12 months - and it is important that each procedure be made as comfortable as possible. For example, Jonathan does not like to take his medication orally - and three times during his stay we have had to work with the nurses to force him to take it. Forcing him is quite traumatic and involves holding him down - arms, legs and head, and (if necessary) plugging his nose to force him to swallow. The problem with this strategy is that we cannot continue to force him to take oral medicine for the next 12 months - so the hospital staff works with us to try and encourage him to take it willingly.
Another example is that Jonathan requires a shot every day - even when he is home. Every day! Could you believe it? This shot is for the drug G-CSF to help promote the re-building of his immune system that was partial destroyed during chemotherapy. I don't even know how we will tackle this issue of having him not fuss to get his shot at home - but the first thing I did on finding out that he needs this shot - is to request a specialist from child life services to come and talk to us. Child life services are experts on helping kids (and teaching parents how to help kids) become more at ease with the various procedures and they do this using a variety of methods - including medical play using dolls, etc...
Besides giving Jonathan the shot every day - there are a whole host of other things we have to do while we are at home. His catheter (central line that goes into his chest) has to be flushed every day. His catheter has to 'lines' so both lines must be flushed. Every four days we have to change a portion of the catheter and once a week we have to change the patch protecting the entry of the catheter into his body. The challenging thing with all of this is that there are a lot of procedures we have to follow to make sure we don't get any portion of his catheter infected with germs, etc...
The good thing is that I got my first practice run this afternoon ... and although I thought I knew most of it ... it was amazing how many additional steps I missed out to ensure I maintain a clean integrity with his catheter. I was kidding with the nurse that soon I'll be a nurse myself - the amount of things we have to do - giving shots, giving medicines, injecting heparin, cleaning - wow! She joking replied that we are like nurses - just without the pay (smile).
One of the things I've noticed that has kept me going throughout all of this is my humor. I'm not saying my jokes are always funny - but it's amazing how the nurses and staff here are so accommodating. I cannot imagine how many times I have had to ask the same question over and over. I've resorted to writing things down - because I don't trust my mind to remember things correctly. The good thing is that I've been told that this is all normal. The frightening thing is that when you think things are getting better - or you think you have digested the majority of the information - there is always more information.
I remember on Day 0 (Sunday) thinking that Jonathan was going very well and that things seem to be proceeding far better than I envisioned. But I have to keep reminding myself that we have to celebrate for today and not for tomorrow or for all time.
On Day 1 (today) of his first induction cycle - Jonathan got his second rounds of both sets of anti-cancer drugs - cyclophosphamide and the combination of vincristine and doxorubicin. Just like the previous night - Jonathan slept through the night - and so did I (thank God). In the morning he threw up three times but the two anti-nausea drugs eventually kicked-in and got everything under control. He also had two bouts of fever - one in the afternoon and another later this evening. Initially I was very concern because I know he already has his bacterial infection that we have to treat once he is finished taking the anti-cancer drugs but with the fever I was wondering if he was getting an infection - especially since the anti-cancer drugs reduces his ability to fight infections.
The thought from the medical team is that the fever might be due to the anti-cancer drugs - especially since it is a low grade fever - but he'll be monitored so if his vitals change, e.g. higher fevers, more lethargic, etc... Tonight is Day 2 and he has one more set of anti-cancer drugs to get - vincristine and doxorubicin. I'm hoping tomorrow is a better day for him because cyclophosphamide is the nastier of the two sets and he is finished with that for now. We are also trying to get him off of the pain medication as well. His dosage was reduced by half tonight, and depending on how it goes, we'll try reducing it even more tomorrow. The hope is that Jonathan might be released either Wednesday or Thursday - but it all depends on whether he starts eating and drinking on his own, and reducing his pain medication to a much smaller amount. My hope is that the tumor has started to shrink somewhat and thus the amount of pain caused by the tumors would be reduced.
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