I want to clarify that I've thrown plenty of pity parties, which quite honestly can be healthy as life truly sometimes is just plain hard. The distinction is an "eternal" pity party, feeling sorry for ourselves being where we land and constantly hang out.
Last Thursday I thought that today Jax would be recovering from having his eye removed, instead today Jax finished his second round of chemo. A month ago I thought that on today Jax would be recovering from inter-artery chemo, instead Jax is today recovering from systemic chemo. Two months ago I really was hoping that today Jax would be completely cancer free, instead we have just begun the process of fighting for his life. Three weeks ago my baby could see everything and loved exploring the world with his eyes, today he can't see anything. Life can change at any given time. There are no guarantees.
The last couple of days have proven to be the same, Jax can feel good one moment and a literal moment later he feels horrible. Today was a rough day for my jewel, it however ending with about an hour of my jewel feeling like himself. Yeah!!! They added an additional nausea medicine and it seems to be helping.
We were also told pretty clearly by the doctors to expect Jax to be hospitalized by potentially this time next week, for sure by Sunday next week 😔. Our Doctor many times said to expect Jax to need a blood transfusion. I have no idea how to prepare my heart for this, nor quite honestly do I feel competent.
We are supposed to be discharged this Saturday at which point we can go HOME to my other jewels and hubby and stay until Wednesday morning. From Wednesday onward, until a few days after the next round of chemo, we have to stay within an hour of Children's.
Chemo is "scheduled" for every three weeks, for four rounds. Yet the doctor has clearly said to expect for things to not go as planned, chemo being delayed if Jax is not healthy. At the end of the four rounds, Jax will have two "blood stem cells" treatments. In addition, in about a month or so we will again talk about whether to remove Jax's eye or not, Jax needing a couple of weeks to heal before he can start another round of chemo.
To me, that sounds like a tentative plan with so many unknowns. We are on the waiting list for the Ronald McDonald house but for now will stay at a hotel next Wednesday that is covered by our insurance. We are looking for a place that we all could live at for July and August, and places that we all could rent for weekend trips. I have to say that it's really difficult for me to project forward a week, never mind a month and a
half. Not sure how it will all work out. I have confidence in that my God knows how it will work out.
I'm still processing being on the cancer floor ... Yet at the same time it's hard for me to comprehend anything that's going on outside of the cancer floor. I keep getting reports of crazy and excessive financial and tangible giving towards our family!! I'm so blown away, I honestly don't understand it. It all just seems so incredible surreal. Be still my heart!! Thank you to all if you who are giving to our family!!! Thank you to the dear friends who are advocating and coordinating on our behalf!!! Wow God!!
The thing that does seem very real though is that so many of you are praying for Jax. I feel your prayer covering and protection. And honestly I'm counting on your prayers. I'm relying on them. I know that neither Jax, nor any of us will make it through without the very real PRAYER force that is on their knees for our family!!
Jax desparately needs your prayers. I desparately need your prayers. My family desparately needs your prayers.
So as I lay in this hospital bed beside this amazing gift of a jewel, who just finished his second day of systemic chemo, I can confidently and boldly declare from the mountain top that I serve a good good Father who gives me so many good gifts right in the midst of my unbearable hard. All I have to do is look to my left and I see one of my Father's sacred gifts, JAX!!!
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