Sorry I have been a little MIA, if I get a few minutes to myself now a days it usually means I am running over to the Ronald McDonald house to do laundry, shower and maybe even sneak in a quick bite to eat. So if this post seems a little long or all over the place I am Sorry!
For the past two weeks we have been sailing on rough water, but I am happy to say that this past weekend I think we have weathered ONE storm and are smooth sailing for now 🙂
It has been 27 days since AJ has been admitted to MED4. That means it has been 27 days since he felt the wind blowing, smelled the crisp spring air, played in dirt, had a scraped knee, played with his friends, jumped in puddles and the list goes on. I try very hard not to think of what he is missing out on. Once in awhile I see a Facebook post of another child doing “normal” activities and it stirs up my emotions. Those emotions start to bring me to a place where I do not want to be. Sometimes I think AJ forgot what his “old” life was like. The questions about what day it is, what his friends are doing and his regular questions about life outside the hospital are starting to dwindle away. He still asks about his good friends and loves to see pictures and videos of them, but afterwards I think its makes him a little upset. Some days that pep in his step, that twinkle in his eye, that “life is good” personality fades away and is replaced by a frustrated little boy. The hardest part of this whole situation is to see my “baby” not be himself. As much “fun” we have here I can not change the way he is feels. At times he just frustrated and upset. I have to learn to accept those emotions and understand that I may not always be able to cheer him up…and that is ok! Before being here I would always see the ST.Jude Commercials along with other pediatric cancer fundraiser pictures and I would see the children smiling and having a “good time”. I thought that inside these walls magical stuff happened 24/7. I thought children had “fun” all day long…well reality struck and that is not the case at all. There are magical moments that happen and when they do ,it is amazing but then reality slaps you in the face again.
A lot has happened since my last post. AJ’s body took a “good” hit from the chemo. His counts were low for long time which made him weak and uncomfortable. During this time he has to get Neupogen shots to increase his white blood cell count(ANC level). These shots stir up your bone marrow and your body feels very achy. On top of that Aj was scheduled for a Stem Cell Harvest, so they had to double his dose of Neupogen. He hates this shot and It is something that causes him a lot of anxiety. He made up a “pinch” plan for this and he does a great job of calming himself down and pushing through it.
A day before the stem cell harvest I noticed that his mood was starting to change and he was becoming easily irritated and just cranky. It didn’t help that he also had a small asthma attack so he had to put on steroids and albuterol. I was happy that he sat through the harvest without many complaints. That night AJ’s mood headed south and he had a really rough night. Nothing was calming him down and I was concerned that something was going on medically with him. Since the 1st time we entered the hospital AJ always went to bed by 8:30/9 and without any complaints. We always kept our normal bedtime routine and he never gave me any issues. Something was different this night! He became very confused, angry, upset, etc…by 2am he was still up and still going through this little “episode”. At 3am he went in for a CT scan to make sure his change in mood was not caused by a shift or something else in his brain. The CT scan came out good and he finally knocked out for the night. He woke up the next morning not remembering one thing from the night before. No one knows the real reason for his little episode. We all think it was a combination of everything. After a few days he started to come back around! His Aunt Bonnie from florida came to visit and that brought a smile to his face. He still was not eating a lot, but at least he was taking small bites of something. Earlier in the week he went 4 days without taking a single bite of any food. That would make anyone go nutty!
On Friday(may 16th) he was scheduled to start his 2nd round of Chemo, but his kidneys are not cooperating…GRR!! His creatinine levels are still high which indicates that they had some damage from the 1st round of chemo. Usually your kidneys will recover by themselves. So the doctors want to give his body a few extra days to see if they will recover. If not then we will have to adjust his Chemo or look into other alternatives. We are also waiting for all his doctors to review his MRI that he received yesterday(May 19th). Crossing our fingers that they see some shrinkage or at least a stable tumor!
Some Highlights from the past two weeks!
Darryl Strawberry came to visit and I think the nurses were more excited then the kids!
He took pictures and autographed pictures for all the patients, which was really cool.
I wish AJ understood how much of a legend Darryl Strawberry is. Instead of asking him questions about baseball, AJ asked him “is your last name Strawberry because you really love strawberries? Do you ever pick them?” Leave it up to my son to ask those questions!!!
AJ also had a yoga lesson with his Aunt and her good friend Tracey. This was pretty cool and I like to believe it calmed the wild beast down! I Also am bringing in an additional art therapist, music teacher and a few extra special people for him. He is such an active kid, physically and mentally. If his muscles are not moving and grooving and if his brain is not being put to work trouble will start to brew.
His big cousin John came from Boston to visit. Technically since john is not a sibling or over 18 he is not allowed on the floor, but with some help from the amazing staff on MED4 that visit happened 🙂
Well the little superhero is requesting my services in the playroom, so his friends and him can make Spidey Webs! I swear all the children know I am in the education field. Somehow I always get roped into planning activities for all of them! Luckily they are an awesome group of boys 🙂
We hope everyone is enjoying spring so far. For those who graduated or graduating…CONGRATS! Thank you again for everyone’s support, prayers and well wishes!
I am going to post a link to something I read that really shows my outlook on life, hopefully it can help someone else who is having an “off” day!…http://www.lifebuzz.com/8-things/#!O1qGZ