I'm completely exhausted! Actually - I think both Gabby and I are exhausted! I don't know how people can work and go through an event like - but I feel like I'm running on fumes now! The worse thing is that we are coming up to a major milestone in which we will go though two months of 'hell' or put a softer way - two months of extreme pressure and stress.
Jonathan is still in the hospital - having gone in on Sunday for F&N (fever and neutropenia). He still has fever (at various times throughout the day) and he is still very weak (at times). From my conversation with Gabby this morning it seems that his platelets and hemoglobin levels are starting to drop again. I'm not sure if he will be getting another platelet transfusion today - but if he does - he would have had two platelet transfusion and two blood transfusion in the space of a week. Also, with his white blood count (WBC) still not climbing it means the healing cannot begin and his sores in his mouth, throat and digestive system will continue to be there and prevent him from eating. Jonathan hasn't eaten for more than a week - and has only been getting IV fluids so he is still to lose weight again. I'm hoping that his counts would start going up over the weekend but we're not sure.
To top it off - we had our consult with the BMT (bone marrow transplant) team yesterday (Thursday afternoon). It's the BMT team that will be responsible for Jonathan's stem cell transplant. Let me tell you - I am not looking forward to his stem cell transplant because if I think my son is suffering now - he will be suffering worse during this procedure. On the day he is admitted he goes through 4 days of intense chemotherapy treatment to wipe out his bone marrow / immune system. He is going on three anti-cancer drugs at levels extremely higher than he has ever experienced before - so all the potential side effects will be exacerbated because of these high levels.
The BMT attending (doctor in charge) also went through the different risks (both short and long term) and it's the long term risks which is scary. At the end of this treatment Jonathan will probably be infertile, have a weaker heart and lungs and would have hearing loss at higher frequencies. When I think about all of this - my mind goes back to the quality of life issues we've read that parents of cancer patients have had to face and I think it is something I need to keep in the back of my mind. I'm not saying that we have to consider quality of life issues as yet - but I don't think I can have Jonathan go through this if he ever has a regression, i.e. the cancer comes back. It's just too much pain and suffering. As the parents of the neuroblastoma (NB) e-mail list puts it - when a NB patient dies they have earned their angel wings. I find it is such a nice way to refer of death - gaining their angel wings.
I have a meeting with my boss this morning because I don't think I can work 5 days a weeks during the month of August. I know for the first week that Jonathan is admitted - I want to spend the entire week with him just to be on top of things. Gabby found I was too harsh or boarding on being rude when I was interacting with the BMT team yesterday but I've learnt that if you want anything done - you have to be willing to 'rock the boat'. As my therapist puts it - if everything I've spoken at 2 decibels, then 4, then 6, and then 8 - and I only get a reaction at 8 decibels, then what is the point at speaking at below 8 decibels anymore? The bad thing is that for doctor's that I've never met, who may be quite nice, pleasant and competent - they would not see the very nice and pleasant side of me - but given the stage we're in - I have no energy.
On the good side - if there ever was a good side - I've been spending more time with Arielle and being more considerate and caring about her feelings. Over the last couple of weeks she has become a mommy's girl and didn't want to interact with daddy - probably because she doesn't see me because I'm either staying at the hospital or I leave home before she wakes up in the morning (to go to work) and reach in very late. This morning as I was getting ready to go out the door (I decided to leave late), she started to cry and said she didn't want me to go! So I turned back around and gave her a hug and kiss and distracted her with the TV - the ever loving Disney channel in the morning - and left again. I know she is traumatized with the entire experience especially when Jonathan goes into the hospital. She and Jonathan are so closed that it is unbelievable. There is pain all around - I wonder when and if it is going to end.
I've come to realize that I'm not good at articulating my words in person anymore. My journaling is by far way easier and allows me to be as descriptive and detailed as I want - which otherwise I wouldn't be able to do vocally. Even interacting with my parents are somewhat limiting - because I'm either too tired or just don't want to talk about it. I guess I'm kind of reverting back to the beginning stages where my journaling was a sense of comfort and I didn't like talking or repeating things. Once tough too is that I suspect that Gabby needs me like I was a couple weeks ago - but I only have energy to ensure the medical team stays on top of things, energy to make the 'almighty' dollar and nothing else. What we desperately need is a timeout - but now is not the time to get it.
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