A great Monday (finally!)

Monday, June 13th

Today marks 45 weeks into treatment.

I am super tired today so this post is gonna sound all discombobulated...

We were scheduled for spinal today so Grayson was cut off of all food n liquids late last night and all this morning. I pictured a horrendous morning seeing as it feels like mos ago we had to do this ritual. It was only the first week of April but still. I lost the hang of it all lately.

Grayson was great about it tho. Actually, he was so cool about it that he had me worried all morning. He was TOO chill but still his goofy self-all from the comfy spot of the couch. It was a little wierd. Not that I wanted a tantrum but I got no refusals and that is odd for a non-stop eating machine lately. Just got us wondering since he was chill and halted that enormous appetite of his after 2 pm yesterday. So the kid had nothing in his belly since 7 pm last night. Then before he went to bed he was given a full tab dose of Mercaptopurine. He slept well and was in a good mood this morning.

So, even though I was wondering if anything was brewing in him we took off to clinic in good spirits. I kept trying to steal kisses from Triston and Caden while Grayson was the one telling me to "let's go see dahcter Dell!".

When we arrived he actually wanted to be carried. Odd again. He usually is trotting along in full speed, happy to be out in the world even if it is LGH world. He is not a picky guy!

We walked into clinic to a few surprises! We had Dr. Goodell again! Princess Jennie is back! And Aerum was in! She didn't think she would be in clinic last we spoke but wallah, there she was peeking around the corner. And then Jennie ran to G for great big hugs! It was SO great to have her back. And the pics of her daughter are gorgeous! When G n I slipped away to go pee before "poke on the back" (spinal) began we returned to Areum knowing our boy! The portable tv was set up w Thomas ready to go. She is THAT good!

By the time G was accessed and draws were complete he fell asleep in my lap. He was out to the point we didnt use as much sedative as usual bc he was on his own auto-sedate mode. He was never aware of beginning or completion he was that tired. It was such a quickie spinal w/out our usual roles of reading books and telling jokes ( injection into the spinal fluid of Methotrexate and draw of spinal fluid). Goodell and I even snuck in a nice conversation together. I have really enjoyed the last few weeks with him. I love Kwon but again, they each are perfect in their own ways. And these past few weeks I have needed Goodell's humor, sarcasm and easy breezy explanations of things. It has helped make that tornado feeling a little less dizzying.

When it came to get him waking for final vitals and check for stability he was hard to wake. By then his counts came in and we had our mystery culprit-low glucose. Not dangerously low but enough to not be aroused easily. I couldnt even shake him awake w tickles. The plan was to try and get some juice into him but we were afraid he'd choke on it. So they hooked him up to some dextrose via port and within 15 minutes he was fluttering those eyelashes asking for food. His low blood sugar may have accounted for the crabbies and chill mood the second half of yesterday-who knows? Could have also been the week catching up to him? Who the hell knows anymore!

Regardless, he woke perky. He was goofy, thirsty and hungry. He asked for all of his gals while we got ready to head out. Areum helped him pick a toy from the treasure chest. He was feeling great! I was feeling great! It was so wonderful to have a back to normal clinic visit w out the latest fever, rash, pox and virus talk. It was to the schedule, just the way I like it.

Counts were great!

Hgb rose after leaving the hospital a 12 days ago at a 7.4 = today 9.4. All on its own w out a transfusion

WBC 3.95

Platelets 357

ANC 1, 960

And we are back to our normal everyday 100% medication schedule! I know it sounds silly to be excited over such a thing but it's anything to get us closer to the end.

Prednisone 2x day for the next 5 days

Mercaptopurine every night (1/2 tab M-R, 1 tab F, Sat, Sun)

Bactrim M and T

Methotrexate (oral) every Monday

Grayson weighed in at 22.5 pounds and 33 3/4 inches. He has grown half an inch since late 2010.

He was in such a good mood after downing a whole apple juice and some yogurt raisins that we decided to venture out after clinic. It was almost 1 pm and we dropped by Trader Joes. I asked him if he wanted to go shopping and he squeeled YES. We had fun. I was on a mission to find healthier items to boost this boy up. As long as he has been eating almost anything in front of him and steroids were back on the menu this week I had the green light. I had a great discussion w Barb the dietician about some options and Trader Joes was my inspiration. I found some awesome goodies! Including the Bob's Red Mill Whole Ground Flax Seed. I am about to get sneaky!

It was all fun and games until I smelled somthing. I noticed G leaning forward in the cart. "G are you going poop?" I asked. "No...I mean yes" he responded. WHAT?! Stupid me forgetting all about the dangers of post spinal diarrhea! I had vomit on the brain not diarrhea. We raced to the bathroom, cleaned him up and got home as soon possible. He has been going every 2 hours since but it is no longer a watery consistency. And now that I think about it, he had some loose stools yesterday, too.

He remains in a great mood even now (7:30 pm). We played in the yard before dinner. It was a nice end to a hectic day.

Triston was sent to bed early for bad decision-making (like locking me out of the house and thankfully letting me in as soon as I yelled at him to do so). Caden bumped his lip on the sidewalk trying to chase Triston. He also mastered entering and exiting the fort toy on two feet all by himself and absolutely loves the slide! G continued to give me some mini heart attacks while insisting on climbing the walls of the fort (and gracefully I might add). It brought back of memories of him first accomplishing that skill weeks before diagnosis.

It was a happy Monday. A happy Chemo Monday. How many people can say that?!

The many faces of Grayson

Botanic Gardens Mothers Day weekend and LGH (of course)

A tornado

That is truly what it has felt like the past two mos. Pretty obvious by the lack of posts, huh? Upon many requests (and the fact I am finally up to blogging in the first place again) here is a catch up. The bullet point version....this ones for my wonderful Najette!

• the last time I blogged was about our hospital stay the first week of April. We ended up there w a fever that resulted in a bacterial infection (of the strep nature). Remember the pics of the Ceftriaxone med we had to administer at home thru his port? Home Health nurse visits? Jogging your memory now? A whole week after that Grayson remained on the Ceftriaxone while we got things back to normal at home (ha, normal? still sounds fake to say, even when I say it in my head). I had report card conferences and IEP conferences to deal with (I just love telling parents their child is not succeeding as well as could be and here's why: autism, neurologicial disorder, TMH, learning disability, ADHD. Insert sarcasm here_______).
• What I can recall from rest of April-I attended a field trip w Triston to the Kohl Childrens Museum. Enjoyed 2 weeks off for spring break (thank you Track E) and attended a Flashes of Hope photo shoot w the boys thanks to the hospital (blog about that one once I scan pics).
• we made it through ok, even through my spring break, with no issues UNTIL Easter Sunday, April 24- By 1 am G had a fever. He def did not feel himself. He was whiny and clingy. I brought him down to the already decorated living room (Easter Bunny arrived minutes before he made it downstairs-picture me like a chicken w her head cut off! Rushing around setting things up so that at least T would have a somewhat typical Easter morning while trying to update the hospital bag w G's latest toy, book n food favs). We were in the ER by 4 am. We went thru the usual. Chest xray, blood draws, blood cultures, RSV rapid, and RSV panel. Shortly after he woke w the fever his breathes were short and deep so we covered all the bases.
• By 9 am we were up in tower. within 30 min we started the Cefepime (antbiotic that covers a wide-range of respiratory viruses). That was given every 8 hours over a 30 min period. We played the fever game, Tylenol game and ANC game. It was sitting at 600 (yuk).
• By MOnday his Hgb dropped near 7 so we hooked him up for a transfusion. By that evening (more than 24 hours since admission) we had our culprits. Rhino-Enterovirus (aka the common cold) and Metapneumovirus (a cold of the respiratory nature). COLDS! annoying! Infectious Diseases got involved again. But thank god or whichever scientist for antibiotics fit for immune-compromised kiddos! Once again (and since diagnosis and so far in all of his life) we avoided pneumonia! We were also fever free since late Sunday night.
• By Tuesday the usual day 2 or 3 bloody nose began a couple of times but platelets were fine. His ANC jumped up to over 1, 000. We were discharged and most importantly, given permission for him to attend his benefit that Friday evening. THAT EVENING deserves its own post-unbelievable! Coming soon.
• We went onto May with the hopes that it would be a calm month.
• T received some mailings from Supersibs which he always enjoys. I also received a huge package of goodies (cartooon videos story-telling blood cancers, kiddie books and parent readings) from the American Center for Childhood Cancers. There is so much free goodies n resources out there that I am just NOW opening my mind to. I even went through the pile on my dresser that has been there since the week of diagnosis (July, people!!) of packets n pamphlets that were tossed at us in a blur. I am getting there. I am getting past the basic info that got us through the initial shock and the foundational definitions as each stage of treatment passed . But more on that in another post (the to do list is HUGE so bear w me, ahem, Najette n AC!)
• That brings us to May. The month that was supposed to be CALM!! CURSE YOU PERRY THE PLATYPUS!
• Monday, May 9th Caden had his 9 mos checkup. It went great. As I filled out the developmental milestone checklist I almost cried at the end. Too often we just go w the day to day chaos n I have to admit...I do not reflect on Caden as often as I probably should. I mean it is not like he causes me much concern. The kid is SO DAMN happy all the time. I wish I could read his mind. But when I filled it out (a checklist I know how to rate/grade myself thanks to my fun-filled job....more sarcasm...and know there are many red flags for autism hidden in there, not that I lie on the thing) there was an eye opening moment as to how well Caden is doing. Above the scales in fact. And the tears wanted to flow from a sad n happy place. Thrilled that he is thriving so well but feeling like I did little to contribute to it. Just days prior he began walking w his toy push walker. Not by my motivational actions either. Triston's!!! T is such a paternal figure to him. Calling me at the hospital to inform me he is taking good care of him. It is so sweet. The attachment he has formed w him is beyond brotherly love. I truly believe it is his way of coping w all of this as well. It distracts him while ensuring himself that he is helping mommy out, too. He will often tell me "I have it all under control, mom". If the kid knew the ratio of formula to water he'd be making Cadens bottles! And he aint no dummy, there is no convincing him of diaper duty! But I shared this with Belmonte and in true Belmonte style he made it all make guilt-free- mommy-sense. He reminded me of the days when I only had T n G to compare each other to. How G did and didnt do certain things bc of older sibling presence. The lack of interest in baby toys, the rush to walk n talk n keep up w big bro. It is just what happens w more than one child. He is right-as always! It was a great visit. We will continue to monitor his weight n height that are sitting at the cusp but otherwise Caden is fantastic!
• May 9th also marked 40 weeks into chemo. Imagine that? In the time it takes to foster the life of a child in utero my Sushi has been poked, prodded, and survived a hell of a fight. We have seen unimaginable ups and downs in him and in the lives of so many friends and family that we love dearly. Not only can one second, one sentence change your life forever so can the lessons we have learned in those 40 weeks. How ironic that it also happened to be on my littlest 9 mos checkup day.
• Tuesday, May 10th T attended his buddy Jack's bday party ( a good friend from Farnsworth). Even though I just dropped him off ( a mom I trust to the moon and back) it was nice to be out w Grayson n Caden. I intended to go back home and rest w them but it was so nice out and they actually fell asleep on me in the van. I knew as soon as I tried to get them into the house they would wake so I became a stalker like mom and sat outside Jack's house and waited for T. Don't worry! I wasn't bored. I cleaned out the nasty nooks n crannies of the van, listened to some music, caught up on emails n FB and even sat in silence. It may not have been a pleasure island but it was OUT!
• Sunday, May 15th T ' s class performed at Sunday mass. I missed it but Charito and Lula attended. I stayed behind w G n Caden. Before he left he sang me his song "This is the Day". This is the day, this is the day, this is the day that the Lord has made. Let us rejoice and be glad in him...and so forth. I cried after he left bc it was such a sweet song. He did great (according to daddy)! I figured he could go that since I attended the Talent Show.
• Since everyone was feeling good for about 2 weeks now I plugged away at homework n mommy duties like getting all of T's exams in for K registration. I made my phone calls for the physical to be sent to the house (since he had his 5 yr in Dec and was not getting one again til Dec 2011) and scheduled his vision and dental. We were set up for a vision exam on Tuesday, May 17th.
• Tuesday, May 17-Thanks to some school buddies I found an optometrist right down the street at Central n Higgins. Loved them!! I brought all 3 boys thinking the place couldnt be that busy. And also thinking we would be in and out. Yeah, not so much. Charito intended to meet me there after his attendance at his mothers oncology aptmt (good news actually). So glad he did. They allowed me to be near T while he went thru the exam. I heard him whipping through the typical black n white letter screening and then when they switched to the other eye I heard T pause. HUH? I overheard him ask "what does that one say?" I leaned over the his assistant and whispered, "He's been reading for over a yr n a half now. Something is not right". Go figure. Charito arrived minutes after my concerned brain went into wondering. Did I miss something? Have there been gaps that I have missed during hospital stays? Am I a good mother? Blah blah. Dr explained things simply n clearly. Triston has a minor refractive error. An astigmatism and hyperopia (far-sidedness). Conditions he assured me I would not have noticed any odd behaviors or strain on Triston's part, especially since he has been reading for so long and never complained of discomfort. Wheeh! That was a relief. In fact they are so minor that we are attempting a corrective strategy first before determining whether the use of glasses will be permanent. To be honest, I was more nervous of the fact I missed some sign as a mommy and not the use of glasses. I cant explain it. I have always felt someday T would need glasses (like 3rd or 4th grade). I pictured it down the line. Or G bc of chemo related effects. But not this soon. But in the big picture this was nothing. I could tell Charito was like-seriously! What the hell else you bringing? Things not going smoothly or uneventful was the name of the game we unknowingly signed up for in April I guess. I stayed behind and helped T pick out his glasses. Actually, while the dr gave Charito n I the low down T hung w the assistant (awesome lady) and narrowed down his choices. The plan is to wear them for 30 days n see if the left eye changes in anyway. If it doesnt seem to then we will patch the right eye (the good one) for a bit so the left eye can balance out. The good news was that both eyes are def working together to compensate the errors. If the above mentioned do not pan out then he will just wear glasses for rest of his life. No biggie. Seriously, this was not much for me. Whatever needed to be done for my big guy. In the end T narrowed down his choice w the awesome help of the assistant. He clearly took to her quickly bc he went by her opinion n not mine. He asked me what I thought but valued hers instead. It didnt bother me tho. He was so mature about it. No fears or refusals. And he looked amazing in them. Obviously it was going to be an adjustment but still. It fit him, his studious and nerdy persona. He decided on a pair w surfer waves on the side. And now that hes been wearing them for several weeks now it is hard for me to picture him w out them. And as much as I worried about school reactions (bc I know how cruel they can be even at 5!) he had such a old man response when we talked it over the night before. He told me he was just tell them what he told me when he put on the perfect pair,"Well, I like them!" And he did. And I did. Yeah, it was our first event in T's world that indicated he was not perfect, but who is. I probably would have been crushed if leukemia wasnt in our lives. I will never forget reading my friend Becky's post about Jack's surprise-I-need-glasses-day. I cried for her. Her son and T are so alike in many ways and I felt her mommy pain. It is not the end of the world but it is change and who actually welcomes change w a huge party each and everytime?! And in case you are wondering...his first day at school w them was great. He seemed so proud of himself. And I think having a the spotlight of change on him was rather empowering in a sense. He is the only w glasses in his class and his peers thought it was pretty cool. T even remembered exactly what specific friends said to him and it was all positive stuff. My worries flushed away. He even remembered the glasses rules-take them off for gym n recess and place them away safely. We go back the end of this month to evaluate our next step but I wont mind if they continue to be a part of him bc it truly does suit him well. I keep trying to upload a pic of him here n it isnt working!!!!!!!!!!!
• Wednesday, May 18-So after coming home for a suprise-T-needs-glasses- Tuesday evening we all went to bed early. Then Caden woke w a fever in the middle of the night Wed. Now a couple days prior (Sunday to be exact) I noticed 3 small red dots above his penis right at the abdomen top of the diaper line. They were not raised and appeared to be irritant rash related. We had changed diapers that weekend thanks to sales and I chalked it up to that. He did not seem irritated by them at all. Charito and I decided unless he got a fever or more of them we were not going to make a big deal. Well the fever changed everything. We wondered what could have been brewing and what we could be exposing G to. The fever was gone by the time I left for work, but as soon as I arrived there I made an aptmt for Caden afterschool. I did not expect to arrive home from work at 2 pm and see what exploded all over him.

I couldnt believe it. We walked into our 3:30 aptmt only to be told it looked like Varicella (chicken pox). Who the hell gets this anymore?! We dont go anywhere or see anyone!!! I know Caden had not recvd his first vaccine (get it at 1 yr) but really! In a matter of 6 hours many of the vesicles (spots) had already morphed into the various stages of chicken pox. We were sent up to lab to confirm it. We also needed to notify Goodell n Kwon. Clinic was right next door. After Caden had a blood draw I walked all 3 boys over to clinic to see if anyone was still around. It was near 4:30 pm and if anything I was going to leave a message about our past hour's events and await a phone call tomorrow. As soon as I mentioned things to the receptionist she went back to see if anyone was around. In walked Goodell informing us we were not headed home anytime soon. He looked over Caden and G. He then explained that he may be able to track down an injection via a research lab he is affiliated w that would take care of protecting G from getting it. There was already a good chance that he still had some antibodies against chicken pox from his 1 yr vaccine but we still needed to cushion him considering he is an immune compromised patient. He tried his best but no luck. This meant we needed to protect him using plan B. An IVIG (immunoglobulin via his port-intravenous immunoglobulin). It's like pumping him w the antibodies he may not have. It was going to take place that evening, as soon as I cancelled T's dentist aptmt (one that I have had to cancel 3 times now thx to hospital stays) and Charito arrived to take T and Caden home. We could not bring Caden onto the peds floor (or any place) n infect anyone. So I headed downstairs and met Charito at admissions while we did the swap. I had nothing w me. But it was to only be an overnite stay so so what if I wore the same clothes n didnt brush my teeth. But I had to leave my sick baby while he suffered through chicken pox. So far he was not phased at all but I knew it was coming. I hugged my men and headed upstairs. My G-well, he ran upstairs! We did our IVIG thing and god bless there was no fevers or anyother hangups while we were there. We were outta there by Thursday afternoon. When I arrived so many more vesicles had gone thru their phases-raised heads, tear drops next to roses (you learn the descriptive lingo while your at it), crusted heads and scab overs. By Friday. May 20th Caden looked like this. Friday and Saturday were his miserable days but I honestly pictured him to act worst. He handled it like a pro and it seemed to phase thru very quickly considering. It was the scabs dropping off that took the longest time.

• I was scheduled to take Friday anyway to be with T for his end of the year school picnic. I kept it that way. It had been quite the week and I needed time alone w him. We had such good time. It was only a couple of hours (just enuf to not be away from Caden n G too long) and right down the street. I couldnt help but reflect on the school yr and how lucky he has been to be surrounded by so many people that care so much for him. I love that I can speak that away about a school, a parish and a community.
• Early Monday, May 23rd G had clinic. By then we were told that he did in fact have some antibodies available to fight off the varicella. So we were really cushioned! We had antibodies and IVIG on our side. G was in the clear. We also had a followup aptmt for Caden that Monday night. Belmonte confirmed the varicella and told us he sure didnt want to see us anytime soon! Me either! We couldnt help but laugh over all this.
• May 27th was Family Fun Day at school and I came home exhausted but full of heart happy feelings. I love doing for and celebrating w our families of students w and w out special needs. The day is ALOT of work but so worth it.
• May 28th I took T to Ayden's bday party. It is still wierd to picture my nephew as a 5 yr old. I love him so. But by 7 pm G had a fever. He was super irritable most of the day. His levels of activity and rest alternated every 90 minutes. We called Goodell and say to try some Tylenol. We joked that no way this was varicella creeping up. The irritability continued on Sunday morning even though he woke with no fever. After a 3 hour nap ( afix we hoped would rid of the crabbies n our fears of something else abrewin') he was still the not so usual self. By 1 pm Sunday, May 29, he all of a sudden had 4 red spots on his scalp and one on his arm. I noticed them as he walked toward the table to drink some milk. What the hell! They were not raised but def looked like the first stage of varicella. I loaded up and called Goodell on the way to the ER. It was 2 pm.
• We refused to believe it was chicken pox but it was the most recent thing G had been exposed to. It was not morphing like Caden's had so it did make me wonder what if. We did the usuals once again in the ER-chest xray (bc again his cough n cold were present, and btw he is soooo good during these xrays. He has the motions memorized and just sequences the requests one right after the other. It is so cute seeing this tiny body velcroed into a tall wooden chair half naked reciting to me "arms up, look this way, now turn"), CBC, blood cultures, and a culture swab of one of the red spots on his head. It started to form a slight head on it so they poked at it until they broke skin in order to get a good swab. yeah, he was less than pleased. And to top it off-in the rush of getting to the ER I forgot to EMLA (magic cream) his port so that was a first and most unpleasant experience for him! I felt like the worst mama ever!
• By 5 pm we were in our room. The plan of action was Acyclovir. An antiviral medication specifially targeting varicella and any other herpes related virus. Infectious Diseases was once again involved. And bc of how contagious he was we were placed in a negative pressure isolation room. This way any air/heat/ac vented into and out of our room was not shared w the rest of the hospital. Picture two sets of glass sliding doors 4 feet apart from the main hallway. Upon entry a person must close the one before opening the next. All entrants were to gown up and wear airborne masks. The precautions were more than necessary. Once Inf Diseases visited me again I understood why. This time I met w the 2nd dr of that team. Both are great to deal with so far. And by now they remember us!
• On Monday, May 30th -She explained that bc of G's immune compromised state the simple chicken pox virus can spread and attack elsewhere, housing itself in the brain, lungs or liver in a short period of time. The herpes virus will go haywire in him if not managed can manifest into hepatitis, encephalitis, liver inflammation, meningitis, strep and pneumonia. Scary! Not to mention the fact that the virus remains in his system longer and travels EVERYWHERE, and since the lungs are on the list of fav places to hide the virus becomes an airborne version w Grayson. That is why he was considered so contagious. Just breathing on someone he is infecting them. But after delivering that oh so scary list of possibilities she also said this-he looked great (which he did. Great mood w/ in hours of our arrival, eating and drinking great, and he would most likely get a mild case of this pox due to the existing anitbodies n IVIG. We just needed to monitor urine output, keep on the Acyclovir every 8 hours and watch for new lesions. Alrighty then! Sounds so simple, huh?
• The rest of Monday, Tuesday and Wednesday were uneventful. We monitored him closely. He was in such great moods. I attempted to get homework done (with report cards n IEPs coming up again) but I could not concentrate. I kept thinking of how every 2-2.5 weeks since April 1 we ended up here. It was draining, exhausting and frustrating. I didnt think Maintenance was supposed to be like this. All these viruses n such G was catching were the behaviors and warnings we were prepped to experience during the intense phases of treatment and here we were. Believe me! I was so grateful we were not in for dangerously ill reasons but c'mon! And what added to the frustrations is that I was locked up to. I could not leave the room and infect others. And I had no cell phone reception. And the internet signal was inconsistent. So, I dove into some books and finally gave into some relaxation. Wierd place to relax, huh? Not to mention that Thursday was some end of the year graduation thingy for T. None of the notes leading up to that day gave the impression it was graduation sort of thing. It was to be a luncheon. Very relaxed and celebratory. And yet each time I spoke to T he was so excited about "graduation". When did this become a graduation thingy!? I began to accept there was a chance I was not going to make it to it. The drs didnt even recommend someone else coming to sit w G while I left to attend it. He was highly contagious. But before I could worry too much about it it was Wednesday and we were being discharged. The lack of new lesions and fever were to our benefit. There was no reason to stick around. In fact, he had such a mild case that every culture swab of a lesion came up negative. We could not prove it was varicella even though the visible stage looked like it. The IVIG n present antibodies halted the progression of the virus to the point that even tho he had some that came to a head they never pussed up. They just melted away. G was still considered contagious and an antiviral med was to be administered at home but at least we were outta there. We went home on Valtrex, an oral version of the Acyclovir. When I was told I had to pick up at the hospital pharmacy downstairs I was ready to skip down the halls! It was my first time outside those doors since Sunday afternoon! G remained on the Valtrex for 5-7 more days. It was still to be given every 8 hours so it meant waking him at midnite each nite to give. We also still had reason to worry about T getting the pox. He had been exposed to two outbreaks. Even tho he has had 2 vaccines it was a possibillity. The onset was still a week away since Caden's outbreak and 2-3 from Grayson's. But to add to the illness boat I also had to worry about strep and Fifths disease since during the week leading up to this hospital stay T rcvd those exposure notes in his school backpack. It was never ending! But there was a plus side to these pox and everything else he had been thru since April. The good news was that he was catching kiddie viruses. None of these hospital stays were chemo (or chemo-damage related). If leukemia weren't in our life he may have caught them at some point anyway. And while he is compromised, catching these viruses does build up his immunity (I never would have thought that!). And even tho we tried to avoid the pox all together, at least we tried! And in the end those preventive measures allowed it to be a very mild case. Can't complain about that. I got two of my kids done w pox and each had a not so horrendous version. Caden really did look worst than he felt. He had two bad days overall. And it was better for him to get it at this age bc it was so easy to just confine him to one of three places-his crib, exersaucer, and high chair. And he doesnt have the fine dexxterity of a two yr old to scratch away so that decreased infection sites. And most of Grayson's melted away and lived on his head for a couple of days. He only became itchy when he sweat after sleeping. see how I was forced to find the positive in all this crap?! I am not always like this but it seriously got to that point where I just threw my hands up in the air and decided there had to be some other way to look at this bc you can only laugh for so long until you get pissed off!
• So here we are a week and a half later and everyone is feeling good. Caden's evidence of pox exists primarily on his nose, cheek and legs. All other areas have cleared up very well. G is an ACTIVE animal driving me insane w injurious possibilities. He has some scabs on his head from when they had to rip open lesions for cultures but other than that no scars. He only had about 10 lesions total anyway. T is done with school (the graduation luncheon was so emotionally wonderful) and I am awaiting my freedom on June 21st. Who is up for a cocktail then?!

Below are some shots from these recent hospital stays. I hope to not be there the rest of June!!!

Eating"sushi" (tofu in chix broth n splash of soy). I was SO lucky I packed that up seeing as I had no idea we would be in a neg press isolation room. I had to ask nurses to bring us the littlest of things-spoons, cereals, drinks, microwave this n that. They were more than great about it tho! They even brought us a fridge so I could at least house some of G's never fail food items since there is no counting on what he will actually eat there. It changes every time!

Showing Areum how to navigate the games on my phone. They taught each other some skills! I cannot even tell you how excited he was to see her!!! We even had visits from Jenn n Shell! Each entering w a WT ____ look on their faces! IKR, this is literally a comedic life at this point!

Tomorrow, May 13th, we return to clinic after our KEEP AWAY 15 DAYS orders so as not to infect other immuno-compromised kiddos. He is scheduled for a spinal and the beginning of Cycle 2A of Maintenance (if all counts cooperate). He has not had a spinal since the beg of April so we shall see how he feels in the days to follow. Glorious steroids will for sure play a monumental part in that oh so fun list of mood altering behaviors!

More April moments

Field trip-with our matching Lunchable lunches

Guess who INSISTS on climbing over things now. He actually looks for larger items on the floor to crawl over! I raise nutsos!

Grayson

An even smaller butt with no diaper for padding. At least the diaper gave the impression of some meat on him! I think he looks like Grampa with a buddha belly and old man butt.

Twisted Triston

Crazy Caden

Don't you just wanna kiss him all over?! He is too cute for his own good!

It's the NEW way to Connect Four ! He had to wait 30 minutes following the spinal before he could sit up. Areum and her creative ways thought of a new game! He just kept telling her more, more.

What a silly game, Areum!

I love the way he looks at her! He thinks she's better than sushi!

Sedated eyes! I asked him if we were on an island together during his spinal tap. I also asked him how many drinks I had in my hands!

So while Areum tooke the time shifting all the possible boyish toys and some of Grayson's fav characters to the top of the treasure chest to be ready for his choosing...she still dug to the bottom of the chest and pulled out a girlie item. We laughed about it! I explained to her my boys like princesses and kitchens and girlie things. And so he proudly carried his mixer for his play kitchen through the halls and into our van! He has cooked everyday since...mostly peas!

April Antics-all in the life of a mommy

Well, I am happy to say Grayson made it through his first month of Maintenance (March) without any hangups! Yeah, we had too many funerals to mention, stomach viruses for Triston and Caden and other typical family junk BUT G made it unscathed.

Then April hit. Literally, the first day of April!

Friday, April 1st

G woke with a fever. A yucky one. 38.6 C. His spirits were good and he ate and drank before I left for work but I called many times in the first few hours. MamaC and TitaMel were with he and Caden and I was at work dealing with report cards, IEPs and prepping for conferences for the following week. Each phone call revealed the temp was not budging. I called clinic for advice for our next step. We had not had a fever episode lasting more than 2 hours since Halloween. I knew it wasnt good. They asked us to come in and at least check his counts. I left work by 11 and was there by noon. I was so glad I called to go in and see them. When I walked in the door it was VERY clear he was not up to par. His energy level had changed since I left at 7 am. I JUST KNEW something was brewin in him. The day before we were blessed to have Nurse Jenn (the one from the hospital's marathon Nurses for Change video) babysitt for him and he had slept most of the day. No fever tho. We both hoped it was just chemo tireds but Friday said otherwise.

When we arrived they drew his blood for counts and a blood culture. He was soooo tired and yuckos. He just layed in my lap whiney and tired. He still had some perky moments, silly interjections toward Nurses Meghan and Noelle. He even fought off Dr Kwon pretty well, too. We were given permission to give him Tylenol (they gave it to him there. If you recall-we cannot give him ANYTHING without their permission) and sent home. If he got any worst we were to call immediately. The blood culture results would arrive in 24 hours.

Home we went. I picked up Mcds (our usual routine after any "Dahtor Twon" visit) and by the time we got home he was passed out. He slept for 4 hours and woke a different kiddo. His energy and appetite were back. We figured he was past up whatever it was.

Saturday, April 2nd

He did wake in the middle of the night and ask for milk. Then we cuddled and shared some ticklish moments all while trying not to wake the rest of the house. I was convinced he was fine.

Our morning went on as a usual Saturday am-MCds breakfast, Phineas and Ferb and reading books and the paper. G was in a fantastic mood with an appetite to match. Charito did some errands, then I did some errands (we didn't want to take G out just in case) and by the time we were all home together again in the afternoon we decided to go for a walk. Then the phone rang. It was near 4 pm. I noticed the caller id and it was Dr Kwon. I thought maybe he was checking in on G. He asked how he was. I reported all good news and he turned my smile upside down when he said, "Well, I am glad he's good but he has to come in. The blood culture came back positive. Something is in his bloodstream. We have to start him on antibiotics." Alrighty then. "How long will we be there?" I asked. He responded by saying 2-3 days the least. It all depended on test results. Here's the lowdown - a positive blood culture means that some type of bacteria grew over time in the blood sample they took. What type of bacteria is unknown til more blood cultures are drawn and longer growth takes place. It is all comes down to time and what specifically grows in the lab.

G heard me tell Charito and he asked for his shoes! He was ready! I thought of Triston. We obviously werent headed for a walk now. I sat him on my lap and told him there was a germ growing in Grayson's blood that Dr Kwon has to get out. He said it before I did, "So you are gonna be in the hospital for a few days? But it's ok, mom. You will call me and tell me when you are coming home, right?" Right-o buddy. I love that kid. He hugged me and told me he would miss me.

G and I were sitting in our room by 6 pm. Luckily we got Tower (the new section of the hospital) with the roomy, hotel-ish feeling space. I don't feel as claustrophobic in Tower. I had a bag packed from the day before just in case so it did not take long to get out the door. We had another one of our fav nurses, Diane that night. We settled into our usual routines and got him started on a Vancomycin (aka Vanco-a general IV antibiotic) until further specific test results arrived. There was no time awastin'! G was still in a great mood and eating well. It seemed as though there was no reason for us to be there from the looks of him. But again, that is the story of our cancer life. Chaos on the inside of his body and a generally happy boy on the outside.

We both slept really well that night. I couldnt believe how well I had slept actually. Considering the day before I had literally walked away from my computer, a pile of work, report cards and notes and stress to rush him to clinic and there was still sooo much to get done. But that is almost (almost-I am still learning how to let go of the other stressors with ease and aint nothing like my work staff to help me along the way) the reality of it all. None of it matters (or should ) when it comes to your children. But I had TOO many deadlines looming in my head. But sleep must have been what we both needed bc it was THAT easy that night.

Sunday, April 3rd

We woke feeling good. I ordered us our omelette, cinnamon rolls, and cream of wheat. Anytime the nurse was in (another fav that day) I ran across the hall for more coffee. This was my "field trip" all day long bc I had to get thru the day w some caffeine. I tried all day long to get work done any chance I got. I was lucky that my IEP and report card websites were accessible from there. I was worried that wouldnt be the case. I know had tons of help from work simply waiting for my request but I wanted to try my best to get what I could done. He continued to get the Vanco every 8 hours thru his IV port over a 30 min period. By 8 am we had his 6 am lab draws. His Hgb dropped to from 7.8 Friday afternoon to 6.9. Below 7 is a def transfusion. He was hooked up to "new blood" by 10 am. They ran it through him over a 3 hour period. It was nice to know his body could handle that rate bc he usually is transfused over a 4 hour period. Now we know for the future.

I continued to plug away at work stuff but my head just wasnt in it. By noon I had a chance to talk to Dr Kwon. He was pleased with G's behaviors, mood and appetite. It was all about waiting for the type of bacteria to be determined. It wasnt until I was talking with him that more info (bc tons is always tossed at us from so many diff people) started to click with me. This was NOT a virus. A fever can mean a virus but this was not. That was why we were there. This was an infection. A bacteria is somewhere and we needed to locate it. If this were a virus we could have attempted to fight it out at home. He explained this was one of two things. A contaminant or a bacterial infection. Test results later that day or the next morning would determine which. A contaminant could have been any lil germ that entered his body most likely during port access on Friday. Like a cough, sneeze, brush of a sleeve/toy/you name it germ near his port area or an airborne germ touching the open hole during that split second the nurse pops that needle into his chest. It can be anything! Any germ you or I breathe in and out on a daily basis (and are easily able to tolerate or even be completely unaware it is swimming in our bodies somewhere) may have entered his bloodstream at some point causing the blood culture to come out positive. OR it is a bacterial infection of any number of types that entered his bloodstream at some point. The hows kept tugging at me. I wanted a why. A how. But just like w his diagnosis-there is alot of unknowns.

My nurse let me talk it through with her further once I thought I had a handle on the explanations. It was like studying for a quiz. Trying to get all the bullet points and make sense of it all. Yes, it could have been a simple contaminant. But either way "an alien" is running around his bloodstream and there was no possible way his already compromised blood system was gonna be able to fight it off on his own. A bacterial infection was the more serious option. With the hopes that no other bodily systems would be impacted. And once it was confirmed to be a bacterial infection we had to find out what type of antibiotic it was most sensitive to to rid of it. That was another reason why blood cultures continued to be drawn so they could find the perfect antibiotic to treat as quickly as possible. The Vanco was not going to be enuf for a bacterial infection.

But what was clear-his blood was going haywire trying to fight this off and the antibiotic (even the general one-Vanco) for now was doing something right. Every blood culture since Friday's during clinic (blood cultures take 24+ hours to obtain results from which is why we got a call Saturday) was coming up negative. The antibiotic was working. But it was still to be determined what that antibiotic was actually fighting off-a contaminant or bacterial infection. She let me know that sometimes up to 3 negative blood cultures lead to a discharge with followups in two days. We still didnt know. And by the way-if any of G's nurses are reading this (or any other nurse for that matter)-if I mess up on any descriptors and amateur explanations please correct me so I can get it right! I am trying my best at this nursing stuff.

But the good side of the coin-his platelets and WBC and ANC were holding up pretty decent. ANC dropped from 4, 000+ to 1, 000+ but at least he wasnt neutropenic. Now we just had to wait for more results. We played some music, reaad books and surfed the net together playing nickjr and disney games. Even tho we were in the hospital we had each other for some bonding time and good laughs. In fact, most of the day Charito and the other boys hung with us. They spent about 6 hours with us. Triston took a trip up to the cafeteria with daddy for whatever he wanted. He brought back all sorts of goodies for each of us (he put so much thought into it all, so sweet). Caden was an angel as usual. He was so content being held, eating in the stroller and watching the parade of adults in and out of our room. The kid loves attention and boy did he get it. T spent some time on the computer while G watched from aside. When we weren't eating, we were playing, watching TV or just being chill. It was nice. Nice that no matter where we were we got to spend time together.

Saturday evening-fantastic mood, loving all the mommy solo time

Sunday -gotta love cafeteria food

This kid would think a parade of ants is exciting!

Monday, April 4th

Another decent night sleep with my bed hog. For a lil guy he takes up a lot of room. And bc that first ever night in the hosptital I couldnt bear to leave him in some metal cage looking crib, I have slept with him ever since. I just sign a waiver each hospital visit that allows us to get a bed and not a crib. He and I fit perfectly in it. I wouldnt have it any other way. He had the usual checkins for vitals and draws at midnite and 4 am. I dont mind the 4 am one and he typically doesnt know its even going on. The earlier we get that first morning blood draw the sooner we have counts and possible test results. Hospital time-drs usually check in w u by 10 am. Dr Kwon is an early bird so we usually see him around 8. He walked in and surprised me with his first sentence. "He sleep good? Wanna go home today?" HUH????? What???? It proceeded to explain it ended up being a bacterial infection. It was a strain of Strep. We could go home on an antibiotic. There were a couple of options of which type would be effective. He asked if we were comfortable with at home IV administration and I said of course. I had done it so many times w AraC in the past. And if it was a oral drug he was to go home with we have not struggled with him to take any drugs since that first week home in August-so either way I was cool with. I just had to speak to Infectious Diseases to make that decision together.

So I waited. I didnt know whether to feel relieved or scared. So much MORE info was tossed at me so early in the day that I now had to sort thru. And more was to be discussed once I met this new dr of a department unfamiliar to me.

And when I immediately met her, during and after-my stomach felt so heavy. It was a whole other chapter to our everyday game of cancer. It was our first TRUE REALITY to the everyday germs we fear and try our best to protect him from.

I will refer to her as Dr D (D for the disease in her title-Infectious Diseases). I will say upfront I did not appreciate her delivery. Her exit left my mind spinning and crushed any confident feelings I had of having some sense of hold over our past couple of cancer months. It was not entirely her fault. It was the raw reality of how fragile he is. She was just stating facts. As I said before, this was our first experience w one of many complications he faces everyday. Just like Halloween was our first hospital stay for a reason other than chemo-causing. She explained it like this:

He had a strain of Strep (one of many of types). This strain usually houses itself in the ears, nose, throat and sticks around for a bit causing any other kid a simple runny nose. For G it went further. This bacteria entered his bloodstream at one of these body parts (like a tiny cut or hole) or from his hands in his mouth possibly while eating or a cut on his hands or a hangnail or well, anywhere. It was prob the tiniest cut or knick somewhere that obviously didnt hurt him enough to complain about or was microscopically small enuf for us to bypass. INSANE! The point was it got into his bloodstream and infected him. STILL INSANE! Something I most likely could have done nothing about invaded my boy. A germ that any other kid could fluff off made him sicker. I know you have heard me talk of these fears for mos (re: our bubblicious life) and here it was. SO FRUSTRATING!

She checked his mouth, ears, nose and throat for any sores or cuts to be sure. And it didnt matter if the "hole" was found or not. It was in him and needed to be exterminated. She wanted to be sure the bacteria did not go further and infect his lungs so she ordered a chest xray. Pneumonia could have been the next step for this infection, easily. She also did not want pneumonia to interfere with the antibiotic of choice.

Chest xray was clear. Her next questions were about what I was comfortable administering at home and I said whatever they felt was necessary. The good news was that there were a couple of antibiotics sensitive to this strain. We had a few options. I asked if one in particular would knock it out of his system quicker, for good, etc. She stated the best option to really rid of this bacteria was an antibiotic thru his port called Ceftriaxone. I agreed I was comfortable giving it to him at home and she said she would then set up Home Health for a tutor session. He would need the antibiotic for 7 days. We would be discharged today and follow up with Dr Kwon next Monday.

Right after she left I met with a Home Health coordinator. This is a setup in the hospital for which any meds or care (unfortunately, there are young patients that are home-bound for their health care needs) are set up in the home by a nurse who then follows you through your needs at whatever point during treatments. Typically the one you are assigned to initially is the nurse who sticks with you for the long run which is nice. The coordinator described the makeup of the antibiotic and how it is administered. This was important bc it was all about timing with this drug. While we were speaking he was getting his first dose while napping. That was at 2 pm. This drug needed to be given at the same time everyday and it would take 30 minutes to complete. That was already a problem for me bc I have to get Triston from school at 3pm. She told me we could push it back 30 minutes or so starting tomorrow. Wheh!

Once Grayson woke from his nap we were ready to be discharged. We were home before bed time. His counts were good then-

ANC 1, 100

Hgb 8.5 (thanks to the transfusion)

Platelets 199

He went home accessed-needle and IV tube in his port ("tubeys in"). This was the longest he was going to be home in access mode-7 days. In the past it was a Mon-Thurs and I deaccessed him Thursday nites. This was going to be interesting. Especially if he was going to act like a "normal" 2 yr old-jumping on the couch, climbing, running all the while making me a wreck. I dont mind it when he is in chill mode but when is feeling GOOD he has me on pins and needles with any fall and the thought that needle shifting. I did not want to relive that moment when I accidently stepped on his tubey in the hospital in November and tore out his needle. No way!

We were to go home and continue to give him his usually scheduled oral chemo meds and wait for the antibiotic to be delivered to our home that evening.

Needless to say, I was happy to be home. G walked in like he returned from a vacation. All cool and relaxed. Barely phased but happy to see Triston (for a bit-and hours later he was beating up on him, same old G. I swear T is gonna need therapy for little brother abuse issues). But it REALLY was nice to be home. I got those kiddos to bed and tried to get more homework done. How was I gonna be ready for conferences Wednesday?!

Once I got in the groove to working, I got a call from Melissa, our Home Health nurse. She called to set up a time to meet up Tuesday. We would meet at 2:30 giving us time to have the drug started in him a little after 3 (a better time frame for us so I could get T). I knew I would like her, she sounded very nice on the phone. Then the meds arrived. I was to place them in the fridge as soon as possible. Everything was labeled very clearly. Everything had his name on it and clear directions. The Ceftriaxone specifically labeled that is was to be refrigerated and was light sensitive. It was sealed in a dark brown ziploc bag to shield from light. I added an additional towel around it and placed it in the fridge. The information packet was grand. I fiddled through it a bit and decided Melissa would talk me through the rest tomorrow. My brain was officially fried and I was off to bed. I decided there was no way I was going to make it into work bc I knew the exhaustion would set in in the morning and I wanted to monitor Grayson closely. And I was concerned that last minute the nurse visit would need to be changed and I needed to be ready for that. I def did not sleep well that night. So much going thru my mind, sorting through the last few days and what still needed to be done.

Tuesday, April 5th

G slept great that night. Everyone seemed well rested but me. It was even hard to get T going and off to school he was so comfy in his bed. I was tempted to keep him home and snuggle w him but I needed all hands on deck for G. It's not like I was sending him off to a dungeon. He loves school.

G was pretty chill all day. I did our usual numerous checks of temps, stools and urine. Monitoring his every move. When Melissa arrived she also had her supervisor with her. That was helpful for me. This whole allow a strange nurse into your home bit was a little nerving but I was ready. I was eager to see how different this antibiotic would be to the IV chemo drugs I had done in the past. I remembered the coordinator mentioned to take the med out a couple of hours before Go time. Rememer-anything given to him thru his port hits his heart first so imagine ice cold fluid hitting that tiny heart and blood vessels all in one quick shot-OUCH! Melissa walked me thru the steps. I liked her alot. It was also nice to talk to other adults familiar with this day in and day out. We chatted about his diagnosis and how we are managing as a family. I needed it. Often when I dont even realize I am due for it.

Rather than the 30 minutes we were told it would take, it took an hour to finish up. From hookup to empty exactly an hour. SOOO glad we pushed it back a bit! G was sleeping when they arrived so of course it upset him to wake with strangers in our house no matter how many times I told him she was our friend Nurse Melissa. Luckily I had someone else bringing T home for me.

He eventually calmed down and just sat and watched TV during the whole thing. When T got home he thought the whole concept was pretty cool.

Prepped set up:

Ball of Ceftriaxone "Ball Medicine"

2 saline flushes "washes" or we pretend his tubey is drinking/thirsty and make swallowing noises

1 Heparin flush "closer"

gloves and alcohol swabs

Medicine ball before:

-we untangle the tube and hook it up to the tube hanging from his chest
The ball part rests on a couch/table/beside him while he does whatever he wants. As long as he carries it with him or puts it in his pocket. I even gave him a purse to carry it in if he wanted to

Medicine ball during:

as soon as it is hooked up air takes affect and the ball deflates as the medicine enters his system

We knew it was done when the bar in middle was rock hard and we couldnt feel any bubbles of liquid remaining.

Silly boy! Making raspberries at me!

The plan was that Melissa would be there Tuesday to tutor and come back the next day to watch me do it. Once she talked through the steps I asked if I could do it and she intervene when necessary. She was comfortable with my experience and agreed. She jumped in when I needed her. She was great.She was a great teacher. The procedure was not much different from what I had done before. And really as soon as he is hooked up you are just waiting that hour before unhooking him. But her next day visit was gonna be perfect bc that way Charito would be home to see it and do it with Melissa. I had parent teacher conferences and even though I was going to run home during my break I would not be there in time for the start time. So that was the plan. It worked out great. An actual nurse would be there to show daddy what to do. Up until this point he had never done any of his IV meds. It was just too difficult for him and I respected that. But he told me he was ready, and really he had no choice. There was no guarantee that I could sprint home during my break. But I could tell the thought of a nurse there in case he did something wrong comforted him. We went with it.

She left reminding us if we had ANY issues to call her cell number at anytime. VERY VERY COMFORTING

Wednesday, April 6th
I worked late into Tuesday night but got it all done. We woke with a rather relaxed kinda morning, much needed. We did Mcds (again) and made sure to stock up on my coffee. I made it to work by 11:30 am (with 2 tall cups of hot caramel mochas in my hand). Conferences started at noon. My wonderful staff had things prepped for me that I still thought I had to squeeze in-printed my report cards, organized n stuffed folders and left remaining notes for me to complete that day ( I had missed some important conferences during my absences in past week and I had to finish up the legal stuff that day for their deadlines). I love them all! And I have to say-in my 11 years of teaching-these conferences went so smooth. Smoothest I have had in years. No drama. Any "bad news" I had to deliver went well(which is difficult enough bc their child already has a disability and usually by April conferences I have additional "notes" I have to share). Maybe it was the zombie-like aura I had about me?! But seriously, I needed that. Even though I was exhausted I was effective and to the point all the while still understanding and open to their needs. I was damn proud of myself for not being there for half a school year and having such a handle on my group in such a short amount of time. I really didn't think it was possible. Believe me, I have my days-where I think I am horrible teacher and feel useless. But even through all the muddle I had to share with the parents there was still time for some compliments toward me and that felt good.

I made it to the house during my break. Charito was doing great. It was nice to see Melissa again. She said she would have to come back on Friday and replace his needle. Typically a needle is good for no more than a week. I was little concerned how that was going to work. G was to continue the antibiotic thru Monday. Deaccessing him and reaccessing him were not mentioned before we were discharged. Melissa and I discussed that would mean deaccessing him. Waiting a bit, applying magic cream, waiting an hour for that numbing to take affect and then reaccessing him. She would be here almost 3 hours or so. We came up with a plan. I told her I had been shown and told what to look for around his port if there was an irritant, infection, or anything not right about it. I check him many times throughout the day. Was it possible to leave it in for the additional two days as long as the port site looked well and his dressings were intact. I have applied extra tape to the Tegaderm/dressing area in the past for reinforcement and was willing to do so this time if need be. She decided it sounded like an attempted plan but she would call our clinic and talk to our staff for what was best. Clinic agreed that as long as the site was fine we could keep the original needle in and just bring in last dose of Ceftriaxone Monday to clinic. We would give it to him then, that way I wasnt spending the day at clinic for those procedures Monday and then meeting Melissa at our house for more. Perfect plan!

So that was our last visit with Melissa. Kudos to the Home Health Program and the wonderful assistance. I made arrangements with her that following Monday to have the program pick up the leftover medical supplies. Even the delivery persons were kind. We really are lucky to have the support we do. It truly makes this whole battle easier.

Thursday-Sunday, April 7th-10th were pretty chill around here. We remained on lockdown. We did not want to expose G to anything or vice versa until this infection was out of his system. He went nowhere-surprise, surprise. We are getting really good at what we call "Drive Thru Field Trips". Taking G with for pickup of drive thru meals, getting gas, dropping off recycables-anything that consists of him remaining in the car. And of course he enjoys them. Why? Bc he doesnt really understand what he is missing out on. Bittersweet thought, huh?

I took T out for a movie and he ran many errands with either Charito or myself. Grayson was in good moods and great appetites. He tolerated his ball medicine very well. He and Triston became our checkers. Periodically during that hour of medicine ball we would hear them yell to us "It's almost done! It's getting smaller! It's shrinking! It 's getting hard! (insert joke here). We cannot complain right? I mean, the fact they are so tolerable of these foreign objects in our home, a part of the process, interested in learning of them and fully aware of why and how and what they do-I better have some doctor sons in my future! I could use the retirement fund!

But even though we were managing G, rest of life still went on. Wednesday Triston went to Awana (thanks to Dave and Najette bringing him). Then Friday night was his Talent show at school. And my spring break began!!!!!!!!!!!!!!! Two weeks baby-boy did I need after what April laid out for us already!!! His class put on a song performance. He was so excited. He saw the whole show that day for the afternoon performance during school hours and he couldnt wait to tell me all about the other performances. He kept singing the song the K class put on and it was hilarious. I brought Caden with to get him out of the house. As we drove over to school and I dropped T off at his classroom for his makeup and costume preps I realized ---Caden has been to Target a handful of times in his 8 mos of life, the grocery store maybe twice and really nowhere else. I prided myself in years past, having my boys out in the world at 2-3 weeks old. Getting them used to the sensory world, tolerating restaurants and raising well-behaved public outing type of kids. And here was Caden with such a limited exposure. Now I know the winter months dont really count much, so I have that on my side but still. It bothered me and I know there was not much I could do about it now, but with warmer months ahead I was going to take advantage of every opportunity I could to "mold" him.

And I have to say, Caden did great in the crowd! So alert and curious. I had the chance to sit by Dave and Najette and Eileen. Triston's class was adorable up there. T was an alligator and they sang a rock type song. Too cute. And it was to all of our benefit sitting together bc right after T's performance I was to pick him up in the hallway and I was able to leave Caden with them. They all got their little man fix-being his godparents and all it was soooo worth it! Even Eileen fed him his bottle. We stuck around for a couple more shows and headed out at intermission. T was pretty tired by then and getting whiney. Bedtime was calling!

checking out the program during the Talent Show

Caden had an adventurous week though, there was more than just attending a talent show-he has begun to boycott some purees (even tho I make them as thick as wallpaper paste. He WANTS big boy food. April has been a big month for him-chomping on cheerios, yogurt drops, honey smacks, rice, bananas, avocado and cooked carrots. We also graduated him to the bigboy car seat. We picked up a new booster for Triston, moved Grayson to the Recaro and gave Caden the Britax. Everyone seems content with their new seating arrangements (at least there are no complaints so far!).

But for Charito and I, we were anxious for Monday's clinic visit. He was most likely not going to go through his spinal that day. But we wanted to know what was next. Counts were def on our mind. We hoped this was all under control and we could get back to our "normal" medical routines.

Monday, April 11th

I prepped G for spinal procedure just in case-magic cream on his spine and port. We was in a good mood, even upon arriving to clinic, considering he wasnt allowed to eat past 10 pm. He was actually excited to be back and see his favs. Princess Jennie is still on maternity leave but he has really taken a liking to Meghan.

I hooked him up to his last dose of Ceftriaxone while we waited for counts from the lab.

Yucko----

ANC 420 Yikes!! it was over 1, 000 when we left the hospital exactly a week prior

Hgb holding strong at 8.5 still

Platelets dropped to 133 from 199

Not so good! Talk about living in the bubble for another week til counts were taken again. His ANC had not been that low in MONTHS! No procedures took place that day. But, G was in a great mood, tired when he should have been, eating well-happy notes for Dr Kwon. We left after the hour of Ceftriaxone and were told to return the following Monday with an attempt to take care of the spinal tap and injection. And bc his counts were so low we took him off all oral chemo drugs until we could assess his counts the next Monday. He still got his Bactrim for the week.

The rest of the week had its ups and downs. Steroid mood swings kicked in-Jeckyl and Hyde made his random appearances:

Turn it on.........

as he tells me " I sad, Mommy!" Boo hoo, buddy!

At this point I am ignoring him with no comments and he is yelling out to Bryley (the dog!) that he is sad and obviously deserves some attention.

And Turn it off.....

This is where he sits when he wants to pout-on any container of pop or drink we have sitting on the not so organized kitchen floor! Wierdo!!

His other steroid-line ( or typical 2 yr old line-take your pick) this month is..."it doesn't work! Wahhhhhh (insert kicks and screams and pounds here)" And if you dont notice he is crying bc you are intentionally using the planned ignoring strategy, he comes to find you and tell you "I kying, you see? You hear me?"

Steroid taste buds this month-
spicy nacho doritos

salsa
avocado

fresh veggies

ground beef-any type of meatball or burger patty

canned green beans
Grammy Sammy organic cocoa yogurt bars

cereal bars

some smoothies

Tuesday, April 12th-Sunday, April 17th

Remember way back when I complained of not having normal family dinners at the dining room table? Well, G must have read it and decided to help his mama out a bit. The past few weeks he has chosen, CHOSEN to sit at the dining room table. Calling everyone else to the table like a town crier to eat. He wants to sit in the adult chair like the rest of us. He wants to be like us. I love it. Grant it, it only lasts about 20 min but it is a step forward. After a while he mosies on back to the kiddie table and grazes through his meal between play exchanges but whatever. It is something, and even better-he initiated it! So now when it does happen, I get to be like other moms and yell at the boys for touching each other and doing this and that instead of eating. I got what I asked for, huh? Love it!

Other silly moments:

It started out cute but then he just looked at me with his SAVE ME eyes and I finally put the camera down!

Helping me put things in the cart

I also brought him with to get my hair done (AC got her Caden fix!) and then we went shopping. Just the two of us to Buy Buy Baby. It was wonderful just my littlest and I. This was his first time sitting in a cart all by himself. Was ready weeks ago and we never made it out til now. It felt like I only had one kiddo! Until I would see something I wanted to buy for the other two. But it was still lots of fun (see how relative fun is these days-HA! I am not hard to please, really!!!) I love their greater variety of Plum Organic and Earths Best foods. I even managed to snatch up more table food items for him. I got to check out the latest gadgets for new moms. Something I had not done since right before Caden was born. It was refreshing!

Playing with my niece Charley's first Elmo that Caden and I bought for her. I havent had the chance to give it to her yet-BC I HAVENT SEEN HER YET!

Yummy rice husks!
I introduced the sippy cup to the big boy and he took to it well! He did it all on his own Monday and Tuesday but then one of his top teeth started to cut and he preferred the bottle. We will go back to after those two cut thru.

We got some cleaning done....

Ticked off that Caden is moving in on his duties. He was soo mad! He is actually hitting Caden when he can. Another behavior I am trying to extinguish! Along with his recent omission of please and replacement with the word NOW! Stinker!

Ayden and lil sis Charley

And we even made it outside for the boys to ride their bikes. I bought a lower trike w an adjustable seat that would prevent G from falling from such a taller height or exerting too much strength. Go figure even with the seat at its shortest setting he is still too short. But, I modified it. For now I used a towel to cushion that boney butt of his and add padding behind him to push him up a bit. Even though he couldnt turn the pedals on his own he did keep his feet on them while we pushed him along. What a back killer! But he had fun and beleived he was doing it all by himself so it was worth it.

On Wednesday, April 13th I chaperoned Triston's field trip to Kohl Childrens Museum. I cannot begin to describe his excitement over this, my attendance! For 24 hours straight, any chance he got to tell anyone he did-"my mom is coming to school with me tomorrow!". We had alot of fun. And ironically I was grouped with his fav female student, S. They talk of each other often and it was so nice to spend time with such a sweet girl. It was the perfect group. And so nice to get out.

Thursday, April 14th

MARK IT ON THE CALENDAR-I OFFICIALLY LOST MY MARBLES, DECIDED TO ADD ANOTHER STRESSOR TO MY LIFE (BY CHOICE IN FACT) AND TOOK ON ......

POTTY TRAINING GRAYSON!

I figured what did I have to lose? I am on spring break-the best timing to give it a shot. We intended to face this mountain August 2nd, 2010 but leukemia put a halt on that. This was the kid sitting on the toilet at 15 mos copying big bro, actually going thru the motions. And then by 20 months it was clear he was ready but I was not about to try it on my last month of prego and w a wedding and other family events jam-packed into that July. Then as chemo months passed and increased urine output, diarrhea days and hospital stays set in I put it all on hold. But with Maintenance we have a nice schedule going. Fewer visits and drugs we are familiar with by now.

It was worth a try.

I thought it all through-I had to consider the times when getting up and down the stairs may not be easy for him due to steroids (which he is on for the next 3 yrs) or times when he does have diarrhea and needs to be close to the bathroom (we dont have one on our first floor-which did not prove to be an issue until Mamac 's cancer treatment drugs n surgery recovery). So, even though Triston wanted nothing to do with a potty seat bc he insisted on being just like daddy I bought one for him. I couldn't even find the one I had tried with T. I prob gave it away seeing how much easier it was to just do it w an adult toilet and not mess with the tiny one. Hind sight lessons. But, this potty could not be some plain jane. That was surely decided upon when Caden and I stumbled upon the Toy Story potty seat during our shopping spree. It has a handle that you "flush" and all the characters rejoice in "Yay!". It was perfect!

When I brought it out he thought it was pretty cool!

And believe me-even if he did an okay job over my spring break and then lost it all when I went back to work so what-at least it was baby steps.

BUT, can I tell you how amazing this boy is!? He has floored me!!! Read this:

Day one, Thursday-only two accidents. I am a throw them in undies or walk around naked potty training kinda mama. I pulled out his Thomas underwear and placed them on him that morning. He has to get used that wet uncomfy feeling and decide for himself it was nothing he wanted a part of. I set the timer on my iphone alarm clock for every hour (I didnt need anything less than that bc he actually pees every 3-4 hours on a typical day). By the middle of the day he was running to the potty each time he heard the chimes. He called it the "bell for trying pee pees". He got M&Ms each time he went. He was 80% successful that day. I did not get my hopes up though.

Friday, day 2-no accidents. By the end of the day he didn't even care for the candy reinforcer (Triston didnt want candy or toys. He was all about stickers!). I, the trainer, didnt even get to fade out the reinforcer bc he was doing it for me! Huh? Who duped who?

Saturday n Sunday-no accidents! And he continued to tell us "pee, pees" when he neeed to go pee or poop.

Monday, April 18th-chemo day was a true test. He continued to wake up dry (another sign he was ready for over a yr now). Our rule is if we are upstairs we go pee on the toilet ndn if we are downstairs we can go on the Toy Story one. As soon as he wakes we try. Then we get dressed for the day and put on our underwear. Sunday night I set him up with his own drawer like Triston's for his socks and underwear. We made a game of it-sorting through the bin in Caden's room that housed he and Gs. Triston and Grayson took turns running back and forth-sorting and filling G's underwear drawer (we use those collapsible fabric bins as a drawer system). G even noticed itw as the same color as Triston's. So when he woke Monday morning and peed on the toilet he ran right to his drawer to pick out of the Thomas or Elmo character underwear for the day. Then he quickly found daddy to tell him he "did it!". I saw he was most excited about the drawer and not so much about going pee-that thrill was so yesterday I suppose!

On our way to clinic he told me, "I tell Dahter Twon I go pee pees. And Meghan. And Areum and Dahter Dell." I love when he rattles off all their names! I love how he included them in his accomplishments. I was excited, too.

The kid I thought this would be the most difficult to accomplish with...did it in two days.The little boys faced with so much out of his control, took control of 2 yr old-hood and owns it! Big time! Each time I think of it my jaw mentally drops and my heart glows with pride. He just keeps amazing me with every step. This boy is gonna do great things, make people happy in his life for years to come. There is so much in him right now and so much more to come. I just know it!

Just watch-Caden will torture me during his potty training phase! That's it-I am starting him off in a few months just to play it safe. Yeah, right!

As soon as he walked into the main hallway he ran to Meghan to give her a hug. Then he turned and ran to Kwon and did the same. It was another one of those precious moments.

I really think it touched Kwon deep down. Remember he is a pretty serious character but G nabbed him that day. Anytime Kwon was in our room he smiled at G, joked with him and complimented him. He even asked G about his baby brother seeing as I had Caden with.

His counts were a bit better but still low. We drew for a blood culture as well to be sure this bacterial infection was outta there. He was able to get his spinal done and Methotrexate spinal injection as well. Counts are slowly rising.

He even allowed Nurse Noelle to access him. She is the third nurse floating around clinic and she would pop in here and there but now with Jennie on leave it all Meghan n Noelle at it. I was glad she did. He needed to get used to her, too. And she is another awesome nurse. I love her spunk.

In the end, he took a visit to the treasure chest with Areum. We were allowed to go back on oral chemo drugs but only at 50%. We will reassess doses next Monday when new counts come in. He wieghed a whopping 22.7 pounds (thank you, steroids). He did another fine job at clinic and made us all proud.

Tuesday (the day I am finally finishing up this post) was a lazy day for us. Naps and lots of TV. Tomorrow another mother and I are hosting Triston's Easter party at school. I sent the kids to bed early so I could finish up the last minute details. We have 3 different projects lined up. I am excited to do this for him and his class. It is the least I can do for his stupendous teachers and all the hard work they put into each day with him.

Other plans for my spring break?

SEE MY NIECE! Visit my Katie and her new baby boy. And try my best to catch up on laundry and other house stuff. Nothing exciting for obvious reasons. But I really am okay with it. I am home with the boys. That really, truly is all I want in my life right now. To be home with them and focus on them ALL the time. I wish, I wish. But at least I can officially say-I potty trained my two yr old over spring break. Exciting times at the Carper household. We know how to live it up! Thomas style. Up until the undies came out, Grayson and Caden wore the same size 4 diapers! Ridiculous. Two down, one to go! My little rice, you better watch out-mommy is watching you!