The past couple of weeks have been tiring to say the least. Between daily trips to Dallas for radiation, a sick baby and Ryan working a TON---we are all beat.
We got home from Round 11 of chemo on Thursday the 30th and we go back to be admitted for Round 12 next Monday. Jackson has been doing really well with this chemo so far. He only got sick once in the hospital and he hasn't been sick since we got home. His energy is great and his appetite has actually increased!
Last Wednesday we went to clinic after radiation. His counts were 130. So very close to zero. We kind of expected that but it was still surprising...his counts haven't been that low since June. So we are locked down...excluding radiation of course. We are very lucky that Jack hasn't gotten sick, considering the number of people that have to have their hands on him every day.
Wednesday evening, I put the boys in our wagon and took them on a ride on our street. It lasted about eight and a half minutes. I looked down and Jack had two huge mosquito bites on his face and they were lookin fierce already. We ended up going back to clinic Friday morning after radiation because his cheek was so very swollen. The doctors were concerned since his counts were so low, but thankfully they did not admit us and we were able to treat it at home.
Ryan thinks the mosquito probably died right away because of the chemo. HA!
Our weekend was very low-key. The house does start to close in on us after awhile, especially when it's just me and the boys, so we made up some errands that would get us out of the house but not out of the car :) It helps break up the day.
Today was Day 10 of radiation...we are now halfway done!! Jackson is doing so well. He does have breakdowns, and accessing his port on Mondays has become rough (ever since his hospital stay he has a hard time letting anyone get close), but overall he handles it AMAZINGLY well.
Sometimes when I talk (or write) about Jackson's story, I pretend it's not mine to tell. I am somehow able to convince myself that--in that moment--I'm just talking about someone I know.
Not someone from my own body.
Not someone I would trade places with in a nanosecond.
Not someone who holds onto me so tight when I have to let him go.
Everyday we walk our little boy back to a big room, filled with strange machines and strange people. And we have to let him go and leave him there. All alone.
This is not normal.
But it's a weird thing, how you can do something so not normal over and over again and it becomes your new normal. Routine. Maybe even a little easier.
But hard as hell at the same time.
People stare at us when we are waiting for him to be called back for his radiation, trying to figure out our situation.
And then they look at us with sorrow in their eyes when they put the pieces together.
I AM TIRED OF THAT.
Please, please, please. Do not be sorry for us.
We are fighting for our sweet Jackson.
There are so many people whose fight is over. Ours is not! We are happy, elated, overjoyed to still be fighting.
I hope to fight his fight the rest of my life.
This is hard, and it is getting harder. During the summer, we really thought we would be done with all of this by now. Being locked down is essential to Jackson staying well, and I would do it for years on end if we had to. It still stinks. I want to take the boys to a pumpkin patch or trick-or-treating. A life changing situation makes you appreciate things more, makes you want to take advantage of every rainy day. It's frustrating to say the least to feel that way but not be able to actually do anything.
But I know, I just KNOW, this season of our lives will pass. I will have to go back and read this blog to remember how it felt to be so trapped, so isolated.
I can't wait for the day that I can re-introduce the boys the outside world. I have a mental list of things I can't wait to do with my little family of four.
This has been my mantra lately...
I will not complain.
I will not have a heavy heart.
I will fight.Granted, sometimes I do complain (ask Ryan) or have a heavy heart. But I always, ALWAYS, fight.
We are trying so hard to not let our fight affect our marriage. We are strong and united, but it's still tough on us as a couple.
The two of us are the only ones that really, really know everything. That hear every word that the doctors say, see our baby at his weakest most vulnerable moments. That share the same concerns and fears.
I am so very thankful to have such a wonderful, caring, kind husband. He is truly invaluable to me. The boys think he hung the moon and then put the stars in the sky. I truly could not do any of this without him right beside me. He works tirelessly, driving back and forth from work and the hospital when we are admitted for chemo, never complaining. He will act completely crazy just to make Jack laugh when he doesn't want to.
I love him for all of that and so much more.
Here are some pictures from the past couple of weeks.
{Favorite picture from the boys' birthday party!}
{Before church the day before being admitted for chemo. We were so happy we got to go! And Jack did put on some pants.}
{Talkin' to Daddy while he was at work.}
{All of the books and toys we collected at the boys' birthday party to donate to the pediatric floor.}
{Waiting for radiation.}
{A boy and his Buzz!}
{Snuggles with Daddy.}
{Music time at the hospital.}
{Leaving the hospital after completing Round 11.}
{Music time at home.}
{Brayden is my mischievous child.}
{The next baseball great!}
{Brayden has places to go and things to hammer!}
{Jack feeding his
Chemo Duck in between radiation and our clinic visit.}
Please cover Jack in prayers every morning at 9:10 as he receives his radiation treatment. We will be admitted Monday morning after radiation for Round 12 of chemo. We appreciate all of your love, support and prayers so very much!
