Sept was filled with the ups and downs of the teachers strike leaving each morning up in the air of where I would be picketing, how far would I be away from home, who is taking kids to school and who can watch them that early in the morning if need be. Stressful.
Sept 18th-Grayson was not feeling himself. It was our anniversary and even though we had hopes for a family dinner at Cheesecake Factory that idea was out the window. My allergies were in high gear days before leaving my bday pretty uneventful. We did manage to meet my parents for lunch tho that weekend. We ordered in dinner and decided to do a impromptu trip to the new Mariano's for a maple bacon donut. It was the day of their grand opening and the whole neighborhood was talking. We wanted to see what the hype was about. It was worth it!
Sept 19th-G had a fine day at school but within an hour of being home afterschool he is screaming (and I mean screaming!) that his ear hurts. For a kid that NEVER complains even during chemo I knew something was wrong. I called the pediatrician several times insisting on an aptmt and finally got in at 7 pm. I get so stressed when any symptom that can clearly point to something -like duh its an ear infection. I worry about how fast it will spread from a "simple" ear infection to something more serious for our guy with a damaged immune system. By 8 pm and again at 2 am bc I was damn sure I was gonna get it under control he had two doses of amoxicillin in him and he was his old self but we were concerned his counts may have dropped while fighting it so we kept him home that Thursday and Friday.
End of September we are informed that bc of the strike we are making up our strike days during my first week of fall break (I would have had two weeks off to breathe). This school year has been beyond stressful without my trusty co-worker (luv you Becky!) so I needed the break. Thank you Rahm and Brizard. And that my spring break has been moved up a week meaning for the first time I WOULD HAVE HAD the same week off as the kids. NOT NO MORE! Thank you again, Rahm n Brizard-----*%*@!! Not that we would have gone anywhere but its nice to know that the family time with no other interruptions and work schedules would have been omitted. Family time is VERY precious to us. So yeah, I am pissed.
We also filled Sept with lots of boy scout stuff. It was pretty overwhelming. I alongside my buddy Krista and our pal Ed are the leaders and us gals know nothing of this scout world. There was alot to digest these past few weeks and
October 1st-Grayson has chemo. Easy breezy vincristine and counts. Labs indicated great counts which made us feel good about the colds that were going around in Sept in his classroom and a good chance he was protected as best as best can be during those past couple weeks. He was also due for a flu shot that day. We didnt lie to him. we let him know that this poke in his arm was going to hurt. He immediately became anxious and Nurse Maghan and I looked at each other like let's get this over fast. Well, poor guy was so anxious that he pulled away at the very end and the last bit of the vaccine dripped onto the floor. What now? We do it again, today or next month. I wanted him protected at school so as long as he was crying lets just get the whammies over with. So there he was getting another painful poke in the other arm. He was so upset that other staff members were coming into our room asking what the hell happened bc they never hear G crying. He simply stated the truth, "Maghan hurt my arms!". What a whammy to her spirits as well! That cutie pie earned sorry points with her though-two Mcds gift cards!
Oh crap! We realized G's bday is coming up fast! It flew up on us . We havent had to plan for his own bday since he was 1 yrs old so we were out of touch. He finally had class friends so I rush to get a invite put together thru Walgreens and get it into his friends' backpacks the next day. Whew!
Oct 2nd-Charito wakes to get up out of bed and I hear him collapse to the floor. He was absolutely fine when he went to bed. He cant move his foot, cant point upward or any motion that involved the movement necessary to walk. He is literally scooting to the bathroom n down the stairs on his butt bc I could not hold him up. We call his mom to bring his dad's crutches w her. I call a friend last minute to take kids to school while I rush to get them ready and be late to work myself. I call him mid day and he is moaning in pain. My mind is all over the place. His dad suffers from gout all the time but it is not his toe affected. It is the top of his foot. He is in major pain just to slip a sock on! My momcologist /honorary nurse mind is brainstorming-rheumatoid arthritis? Autoimmune disease? At mid-day I decide without caring what he thinks that he needs to see dr. He is NOT going to ride this out for a few days and hope it gets better. He couldn't even go to work and neither of us are ever in a situation to eat away days when we need our days for hospital stays. By 3 pm I am wheelchair-wheeling him into dr office. 3 doctors take a look and are baffled. Charito's verbal description matches gout diagnosis but odd and rare location. X rays say no breakages. We leave w prednisone to cut down on the inflammation and are ordered to return on Thursday for blood work results.
Oct 3rd-C stays home. I go to work worrying.
Oct 4th-G had his first field trip to the Peggy Notebarte museum. He was partnered up with his pal Mikayla and her mom and I couldn't have been happier. I unfortunately missed it bc I had an IEP scheduled that day. he did great and the mommy took such memorable shots for me.
Later at the drs it is confirmed to be gout. High uric acid levels said so. Funky location but it is what it is. But that is not what really worried them. There's always a "but" in our lives isnt there? As soon as she says your blood work had some red flags... I interrupt with "was it his red blood cells by any chance?". She nods yes. I explain how Caden was diagnosed with thalassemia in Aug and through that we are told Grayson has had it too. News to us actually but I can understand why it never came up. Leukemia is a MUCH bigger deal don't you think? (this is it's own stressful story in itself but let me just sum it up by saying-the referral for Caden was to see Grayson's drs. Yes we were worried but we would have been a SUPER mess if it was an entirely different team of drs we were to meet up with. At least it was a team that knew and watched Caden grow since 5 days old and take such amazing care of our Grayson. But I would be lying if we said we weren't worried. What comforted us? Knowing it couldn't be any worst than cancer, right?) Charito's dr says what we already knew is that it runs in mediterranean and asian blood. She suggests a smear test to confirm her thoughts. I get tested too to rule me out just in case. If I was affected I would have to inform my siblings as soon as possible. As we left we were also able to get our flu shots to protect G. Alot was discussed and marinated during that one and half hour visit!
Oct 6th-Triston had a soccer game and Charito is able to hobble around finally without crutches. We are thinking the flare up is subsiding and now we just wait for the next one which could honestly be a whole yr from now. No telling.
Somewhere in between all of this my fatherinlaw is in and out of the ER with heart issues (which causes so much worry on my ma in law and hate to see her like that. She is a cancer patient herself and I never want anything destroying her positive spirit and yet she still insists on being here w the boys to help us out, our boys continue to be her best chemotherapy) and my grandmother is rushed by ambulance with congestive heart failure. She is still in the nursing home.
Oct 7th- T goes off to a party for a good friend that is moving in a year. It was so sweet and he had a blast. He needed something fun and distracting among the chaos.
Oct 8th-Kids are home from school on Columbus day (not me thx again *&%$##). All three of them home to drive the lulas nutso had me worried but they were great. Not even an hour after I got home from work G is begging me for a nap. I try and stall him with no luck. It was evident his body needed it. He wakes crying hysterically that his ear hurts. WTH. I call peds to see if I can get in since they have late nights on Mondays. No luck. But they get us in earliest Tuesday at 10 am. The nurse mentions to give him tylenol but I hate to in case we mask some other symptom that his oncologists then need their own phone call in for. But after 40 min of him unable to calm down I give in. He is absolutely fine within an hour. I think we are in the clear. Stupid me. Right before dinner Triston throws up out of nowhere. At 1 am he wakes with the same pain. I give him tylenol. Good news-no fever accompanied with it. Old ear infection never cured? New one? Same ear. IDK.
Oct 9th- We did not send the boys to school just in case.I leave for work Tuesday morning to get a few hours in and leave to take G in. I bring Caden with just in case he has a "quiet ear infection" bc of his better immune system. I am even wondering at this point if he is the carrier and only G is getting slammed with it. When I come to pick them up at 9:30 I observe all this runny dried up wax caked on the outside of Gs ear. Drainage. Possible perforated ear drum is my thought. The awesome Dr Belmonte tells us that it appears to have been one but at least there's no hole remaining decreasing infection. Other good news-although he was uncomfy the past 18 hours his body handled this all on its own. Screw you leukemia. I am given a script for a stronger antibiotic, Cefdinir, to administer if he complains of ear ache again. Til then we are to administer ear drops to clear out any remaining bacteria. I drop them off and go back to work. The rest of the day he is fine. He is fine to return to school according to dr. By dinner time he has loose stools. No fever. I hope it isnt like that in the am.
Oct 10th-G's bday. The big 4. He his hard to wake. He says he wants to go to school but begs for "a wittle bit more time to sleep". Not a good sign. We give him 15 more min and he falls back to sleep. I call in the early am from work and he is on the couch and too chill for my liking. Not lethargic but not my G. I run to Marianos to pick up the Thomas cake he had his eye on at the grand opening. As I am handing my credit card to the cashier the tears flow. I know to never expect a perfect day. But I had hoped after that ear clear up nearly 24 hours before that he would at least be able to share his bday at school w his friends. Now with how he was feeling we had to cancel my family coming over that evening. No fair to put him in the position to force himself to run and play if he is not up for it. Or to pass something unknown onto the nieces and nephew. Especially my new niece that I haven't even me yet thx to cold/flu season. So here I was purchasing a big ol cake for only the 5 of us. I come home during my break to check on him and he's on the couch sleeping. He runs to me and I show him his cake. He loves it and thanks me over and over again. Then he asks when his family is coming over. I have to break the news. He is bummed. Me too. I give him his ear drops and try to leave. Try! By now it is clear he is not feeling well and he just wants his mommy. He is begging me to stay and hold him. I hold him tight as I fight back more tears. I have to go.
By the time I get home he is running around playing all over the place. Great mood and eager for his cake. he gets plenty of phone calls from family wishing him on his big day. I am feeling good about his behaviors but still bummed that he is not getting his little party. The 5 of us eat pizza and sing and dive into the yummy cake. G seemed so content with the turn out of his evening. He just reminds me that he is a boy that does not take much to please. Oh and did I mention that the favors for his party arrived from Oriental after I had to rush shipping w a $32 fee and 1/4 of my items were missing! When I called them at 7pm the one thing I needed the most was out of stock. yup, I cannot make this shit up!
Oct 11th- Since midnight he had a restless night. That makes 3 in a row for me. I barely slept listening for any sounds of hurling or breathing issues or anything. We were so deflated as a family emotionally that we just wanted to feel our love so much that all kids slept with us. T got comfy on his sleeping bag on the floor and Caden would nuzzle for a bit until he decided his bed was much more spacious. G always sleeps w us when he is not himself. By one am G woke with "my ear is starting to hurt a little bit". Of course it is! I get in the car and head to CVS by 1:15 am. I am not &%$## around with this damn ear anymore and filling that prescription. But why would that go smooth?! There was a typo on the script and they had to contact the dr in the morning before filling it. Of course, when I want to get a dose in him as soon as possible I cant! He hadn't complained at all since Tuesday! And every hour that passed meant the possibility of pain. Right now it was just an observation to him, an annoyance. I did not want the loud screaming and crying again. I did not want an ear problem to evolve into some ENT respiratory issue within hours! I do NOT want or have time for a hospital stay! But nothing I could do. By the time I got home he was asleep again. He woke to loose stools once again. His mood is fine, appetite great. But I felt this deep need to monitor him (and honestly was exhausted by now. No sleep and worry wart for 1.5 weeks for all 4 of my boys and I was spent. Charito has been unable to do anything with his foot. We thought it was getting better and on Tues and Wed it was bad again. He cant do laundry,wash dishes, take out garbage nothing. He goes to work and comes home to put his foot up. I am beat. I stayed home from work today). We have avoided dairy since T's vomit episode Monday and yet he was still having loose stools. If he had any other major symptoms I would have called oncologists. By now I am convinced that the stools are a sign of whatever type of infection he is fighting. Overall his body is doing a damn good job if there is no fever yet.
But boy was I glad I stayed home. I was able to take T to school and have face time with his teacher, get to the bank, and do other errands I was unable to accomplish w all these dr aptmts. And the best part was that by 8:30 am CVS called w the antibiotic issue all cleared up and ready to be picked up. And I was home to catch the phone call from Charito's dr and issue my complaint that he was still unable to walk like he used to and we arranged a new script for him to get this under control. When I got back at 9:30 am G was ready for a nap. He usually does not nap at home and his body read give me a nap! Gave him a dose of Cefidrin by 10 am hoping we can kick this thing. He woke whiney and said his head hurt. The stools remained loose. He is still a bit up and down, the kind you get when you arent up to par and just want your mommy. He needed me today and I got lots of cuddles in. Even Caden was happy to spend the day with mommy (he woke w a runny nose again so he needed mommy too).
We don't like the off and on needies he had today and the stools. There was even a point today that I thought a fever was creeping but we didnt reach the dreaded 38 celsius. We are keeping home again tomorrow. His big party is Sunday and we want him as best as he can be for it. We know there is a chance that he may not be well enough for it. The party will most likely go on without him. We will cross that bridge in the next couple days. Things have been so hectic that I realized in the car today that he never even opened his presents. Only Caden had a chance to pick something out for him. T and I never got a chance to go shopping, nor daddy and I. G never even asked for anything on Wednesday. That cake was the highlight of his day. I finally brought them in today and it kept them busy working together as good brothers should.
I will keep you all posted on his this bug we seem to be dealing with.If it continues much longer we are going into clinic to check counts. All I ask is that you send us some prayers for him to be well enough to attend his party on Sunday. He adores school and is so fond of his classmates that I really dont want him to miss it. This boy deserves this party! Thank you!
4 big boy candles-2 yellow representing 2 yrs of his precious life fighting leukemia and two representing (dare I say it?!) our fav character Thomas. Oy veh!
