A New Stage

September 7-12

The day we went to the Arboretum we noticed some mouth sores on G's inside lower lip. I had skipped a few doses of Nystatin (to treat and prevent mouth sores) and it bit us! Dr. Kwon had mentioned that if he didn't have any at end of Induction stage then we really didnt have to do it everyday. So I skipped Tuesday, Wednesday and Thursday but realized on Friday I made a stupid move. Yeah, he wasn't getting Prednisone anymore for some time to come and I made an errror in eliminating any meds at all. We created a routine w meds and to take a break and then take back up again during Consolidation phase could cause a huge fight (bigger than the struggles we already had during med time at home). That Friday I gave him a dose of Nystatin but it was to late as evident Saturday morning. I went back to the three doses a day and by Sunday morning they were gone. The good thing was they didnt seem to bother him at all. They just looked uncomfy to us!

Tuesday was to be a big day. Nurse Jenny told us to be prepared for a long one. 8 am to 4:30 pm. We were scheduled for Methatrexate (injected into his spine which he has had several times already (which also meant another morning of no food or drink due to sedatives), Ara-C, and Cytoxin (both injected into his port). We were told to bring alot of diapers. The Cytoxin drug he would be administered compromises the bladder and he would be pumped w fluids all day. The last time he was given fluids all day in the hospital I remember changing his near explosive diaper every 30 minutes! I brought a brand new pack (the size 4 he didnt fit into all that well anymore bc I didnt care if those were wasted thru in one day).

We were met by our fav Nurse Jenny. She came in with a huge smile and said, "Good news! Pause We are in remission!" I didn't know what to do. I know my jaw dropped and I felt a rush of tears but something told me to not bother celebrating w those tears. I remember locking eyes w Charito. Our eyes smiled but hearts said something else. It was like there was guilt for feeling happy about it. But it was the "IT" we didn't understand. What did this mean? And before I knew it we asked that question simultaneously. She explained it meant that there was an absence of leukemic cells in his bone marrow, generally speaking(I could get all scientific and explain the percentage that they look for in relation to body mass and blood conditions and the number of cells, etc and what percentage we were at in dr terms but really its all junk). Fantastic news. That means everything that was being to done to this point did exactly what it was supposed to do. We were on a great track. She gave us this glimmer in her eyes that told us it was ok to be happy for this. We still had to go thru the timeline as described weeks ago but this was all great news.

The day moved on. She washed (sterilized) his port, put a pillow on it (gauze), wiped it w a blanket (more gauze) and poked on the count of 3 -our usual routine for port access. The needle is in and he is all hooked up for meds and/or sedatives. The only difference w port access this week is that he would go home in access mode. I had a chemo drug (the Ara-C) I was to administer thru his port the next 3 nights.

It is too funny...he cries and whines thru it all but asks thru tears to help her. He still wants to hold the tubes that collect the blood for the lab results that give us those blood numbers 20 min later. See how he has the purple tube in his left hand. He even says "otay" after each step (okay). She just smiles thru it all. Other nurses come in to watch bc she just brags about him. She wants to show him off to the 8-13 yr olds who whine during port access and spinals bc G does a better job than they! One day he won't cry about it! You just wait and see!

On a tired day during sedation (if he had a rough night w little sleep he takes a little nap after procedures)

When he wakes or during sedation he looks this giddy! Happy sleepy drugs will do that to anyone! He is watching TV.

His numbers when we walked in:

Weight-20.2 lbs

Hemoglobin-7.8 (below 8-not good)

Platelets-236 (went down but well over 20-so good)

ANC-1, 160 (Went down but still not nuetropenic. Surprised us!)

As soon as I heard that Hemoglobin number I knew we were in for a transfusion. I automatically assumed it could be taken care of there in clinic (I mean, we were going to be there all day long!). NOPE! Transfusions are handled in PICU or PEDS ( I guess they are working on getting the rules changed for clinic allowance but it still has not happened. It's been a two yr work in progress according to Regina our clinic pharmacist, another sweet lady). Megan (another nurse of the dynamic trio that is slowly introducing herself to G when Jenny cannot be there for G) asked us if we wanted to take care of the transfusion that day or Wednesday. Seeing as it needed to be taken care of in hospital if we did it that day we would leave clinic at 4:30 and then walk to PEDS and do the transfusion and be home around midnight. Um, no thanks! I wanted to see Triston and Caden at some point later in the day! It was bad enuf we had a rough morning getting our butts in gear (G did not help-since he had no food or drink and was his usualy crabby self he really fought me to put his EMLA on (magic cream. I have to apply it to his port and injection sites-spine or hip bones right before we leave each treatment day so it has time to numb him. Then I struggle w a Tegaderm patch or now super cheap Press and Seal as a bandage over it so it doesnt ooze all over him and keeps it in the right area. Who knew the many uses for Glad Press and Seal-it's not just for your kitchen/food duties moms!). It made for an entirely crabby household. I think Charito and I had tense vibes clicking thru the house which added to the chaos. We were nervous. We did not know what the day held for us and it was an uneasy feeling. Our routine of Induction phase was ending. The drugs and reactions and knowledge we had of that stage was over. Something new to tackle was before us and it scared us. I just wanted to see my boy and end the day on a good note with them. A celebratory hug, perhaps?

So we decided to take care of the transfusion the next day seeing as a hemoglobin tranfusion is 3-4 hours in length.

It's ironic how in retrospect (after the description of our new Consolidation phase) we now look at those 5 weeks of Induction with a bit of ease ( okay-a tadbit). It was not as hellish as it was supposed to be? Maybe? Once we got past the shock of that first week and into battle mode, I guess. It was more emotionally draining. Draining of us the worry of so much unknown. Most of what we prepared ourselves for had not occurred yet. But G pulled through and "made it work". We were blessed with :

• more than 2 weeks of great mood and energy


• walking w assistance vs the weeks he lied on the couch w barely any physical energy but some giggles escaping once in a while


• only two episodes of vomit (one bc of morphine and not chemo drugs and another bc we pushed fluids to much and too fast and upset that lil belly)
  

• smiles and laughs


• mood swings as we were warned about which I didn't mind so much bc it meant he was in his old stubborn self


• great appetite


• brotherly and mama's boy moments


• daddy's boy silly moments


• Bryley cuddles


• tapping Caden's "nosey"moments


• and a couple outdoor field trips


• no colds or infections (of the sick type or at his injection sites) for any of us!


• visitors


• Great meals and prayers and cards from family and friends


• and so much more I know I am forgetting

The spinal injection took place and then the Cytoxin was injected into his port. Then we moved down the hall to the Day Room to hang out w fluids rather than
occupying a private treatment room. G was awake and talking up a storm. And ruling over us w his position as dictator as usual (his new title since the hospital stay). This is where he sits there all hooked up and dishes out directions to us. Which movie, what to eat or drink or what toys he wants. Anything to make his stay more comfy is how we see it. Daddy took a break around lunchtime and walked over to Portillos. G was content w his cheese fries. We watched a few movies and read a few books. By 2 pm Charito left to get T from school. I waited w G. The most important thing during this day was his urination count. W/ each diaper they weighed his output. He needed to reach a certain amount of output before we could leave. At 4 pm the Ara-C arrived and Jenny demonstrated to me how to administer it. It seemed eezy peezy. She reminded me how to remove the needle on the final day as well. Right when we were ready to go home she noticed he had not given enuf urine diapers. We were shy. The office closed at 5 pm. I did NOT want to get sent to PEDS to wait for a pee! She went to talk to Dr. Kwon. He told her to give him a shot of a med (dont remember the name right now) that would make him urinate in minutes just to be sure there was a decent amount of urine available in his next release. It worked fast! She weighed the diaper, tested the cotton balls I had been inserting (they saturate them to determine if there is blood in his urine) into his diaper and sent us on our way. It was now 5 pm. I left with my bag of "homework"-the supplies necessary to do his intravenous meds. I did not get home til almost 6 pm. It was a draining day.

This is what he looks like in access mode as opposed to just the "button"/port on his chest. I had to tape up his "tubies" so they didnt dangle past his belly button (we learned fast when it got caught under a Geotrax train track).

My homework. Gloves, alcohol wipes, 2 sodium chlorides, 1 Ara-C and 1 Heparin. I sterilize the access tube w/ alcohol, flush (clean) with sodium chloride, inject the Ara-C, flush again with sodium chloride and then close with heparin to prevent clotting. This was to take place 4 days in a row at 4 or more different sessions during the 56 days of this Consolidation treatment phase.

EVERYONE went to bed early that evening. I made it home again without any vomit in the van or for the rest of the night for that matter. I had to rest up for the transfusion the next day.

Wednesday

When I arrived in the lot I was uloading the car and who approaches me? Dr. Belmonte. He was headed out somewhere and walked over to say hi. I was able to tell him we were in remission! It was so nice to give him the news. He hugged us and told me, "Yes, this is gonna be a good story to tell in the end. I just know it. I am so happy for you guys. Keep it up" Just running into him unexpectedly made my day!
Nurse Jenny prepped everything so that all I really needed to do was walk into PICU and have the blood sent up. She cross-matched his type before I left and even sent the papers electronically for all necessary staff to be prepared for the next morning. I was told to arrive at 9. I dropped T off at school and arrived a few minutes late. I then sat at admissions for 20 minutes. Then had to wait for everyone else to get their act together in our PICU room. Even though we had our blood type match bands on and all of OUR paperwork in order someone else down the chain did not. The transfusion did not begin til 11 am. I was so upset. I was under the impression the day before I would be out of there by 1 pm the latest. Now I would be lucky to be home by 4 pm. I had made no other arrangements for T to be picked up (I usually do on Mondays just in case but, again, I didnt think today would be an issue). That morning T had such crabbies. I had the crabbies. We was so whiney and well, annoying. Hanging on me at the school doorway and whining about junk. It was one of those mornings I never wanted to have, the kind where you cant wait to get them thru that school door and off you. I was THAT mom that morning. I hated myself for it! And NOW bc of some moronic unkown hospital staff member I was not going to be able to pick him up and make it all better. I sobbed before I could compose myself enuf to think of a plan. G was sleeping soundly. He usually does during a transfusion (especially the 4 hour ones) bc of the benadryl. I know it probably seems like What's the Big Deal, Sara? Just call in your typical back up people you have ready on Mondays. But it wasnt that at all! It was the way T and I left each other that morning. I WANTED to be there and now I couldnt. It made my stomach turn. I texted Charito crying. I hated that I had no control, ONCE AGAIN. The nurse on duty offered to have one of the volunteers sit w G while I went to get Caden. I was not about ready to let some stranger sit w my boy for an hour bc of traffic and risk him waking w/out me there. He calmly walked into PICU and PEDS in recent weeks and I was not going to jeopordize that happy feeling, especially when its as if he knew he had fans on this floor! I called Mamac to let her know that my neighbor would walk over and sit w C while she walked to school to get T. After I hung up I cried some more. The situation was taken care of but it still hurt.

When G woke at 2 pm he was hungry. He fell asleep within minutes of the benadryl at 11 am. I blogged and read during that time. I just couldnt nap. I was too upset and restless. Good thing I thought ahead and ordered him pizza from food services. They have really good mini pizzas! He ate half! I ate the other. Here he is enjoying every bite while watching Cloudy w a Chance of Meatballs.

We were home around 5 pm that day. I was pure mush. I couldnt think about anything. I was on emotional edge as well. I wanted to cry at every little thing. I for sure cried when I saw T and C and hugged them tight.

We ate dinner, pumped G with the homework meds (he took it well considering it was mommy's first time. He played w the Ipad while I did it. I have to say...it felt empowering. Here I was playing nurse again and juicing up my boy with the chemo drugs that are going to fix him. An odd feeling but a good feeling), ate some chips and watched some tv before bedtime. The end to another day, a new kinda routine and pretty much a taste of the next 50+ days at the Carper household.

We noticed by the second night the nit-pickiness of these new round of drugs. The Ara-c can be given anytime during the day if we wanted but it was recommended to do it at night (so they sleep thru the nausea. It gets kids VERY nauseous. And so does the Mercaptopurine (Ha, Jenny told me the parents call it More Crap To Put In! So, I am just gonna call it "More Crap" or Mercap during blog). But in addition, the More Crap needs to be taken on an empty stomach and no less than 30 min before Zofran (anti-nausea) and no less than an hour before or after any dairy consumption or it will not absorb into the body. Not to mention the time it takes for me to setup the homework meds for clean administering and gauge his mood for ease. So, we knew we had to get the Zofran in sometime after dinner then watch him close to see when he stopped grazing on food or drink. You see, he rarely sits long enough to eat a family meal. None of us do these days. It is too difficult. The best times it happens is on weekends and def during breakfast on the weekends. Otherwise we just give in to the grazing of meals and snacks and drinks bc G doesnt really know when he is gonna want to eat. I take what I can get. The drugs really mess w appetite and control. Often he eats whenever he sees T doing it OR when he passes by some food and it catches his fancy, so I just leave plates of food out for G to pick at. It is MORE important to us that he eats and drinks and digests than fighting a family meal into the schedule that he is gonna throw a fit over anyway. He sat on a couch for days and now that he has his energy back and movement he does not want to stop. We dont want him to stop. So this is our compromise. It just means watching him closely all day to determine when he took a sip of milk or not. I pull items when I can, when hes not looking or engaged in something else. So you see that bc of this meal frenzy that occurs after Charito gets home I can't have a set time I administer the IV drug, Ara-C. Makes for hectic nights with tons of observations. But we manage. At least most nights Charito and I get to sit down together bc the kids already ate (T is very tired these days w full day school and often chill by 6 pm. I am not quite back to my 6-7 pm bedtimes like before diagnosis but I WILL get there!).

By Thursday we noticed G had a cough and runny nose. I called on Friday and Jenny told me that as long as he wasnt coughing anything up, vomiting or had a fever it was all part of the reactions to this round of drugs. A constant cold or flu. It continued through Monday at our next treatment and Dr Kwon was not too worried about it. So far it was all normal.

We also noticed that week that G started to lose some hair. We would find these single loose hairs on his pillow at night but I guess denial kept telling us they were Bryley hairs (oh yeah, on a good nite (being sarcatic here) we have all 3 kids cuddling plus the dog). I still joke that "I found another Bry hair!" Although we knew this would be a possibility I didnt know how his hair would go about falling out. Clumps? Patches? But so far it is lose hairs like he's shedding that I notice on his pillow, blanket or changing table pad. I dont think it's all that bad right now. It just looks like he has a messy crew cut with a shaved back. We shall see if there is more to come or if it will stay this way. Today (Sept 18) it hasnt changed much from the photos below. Kinda like he has a mohawk on top bc his crown and middle are still full.

Guess who snuck in?!

He is still a cutie. And boy has his old personality kicked in full force. I have realized that even tho the sibling fighting and arguing can get at the mommy nerves I would rather hear it than never again. I find myself grinning when I hear it in the other room. The same episodes and reasons I used to write about G in my other blog before leukemia-him pushing T to the limit, antagonizing til I intervene or just plain exercising his right to well, anything he wants. It is mulitplied by a thousand these days. He has little patience, control and emotional regulation. I even got a few glimpses of old tantrums-full out on the floor w a pat of the head onto the floor in baby frustration. The drugs do this to him. It is hard to watch but I keep that in mind. He has so much out of his control that he is trying to control it all. A lil guy with a humongous sorcerer's complex! I cant imagine how trapped he must feel at times. And yet, to just go w the flow and not really understand it all. I guess he just knows that as long as I have 'mommy, daddy, Tis Tis, my baby (Caden), and Bwywee' it is gonna be alright. A lesson learned-I need to think that way some days!

Some Freedom, Some Forget and Tons of Grateful

Aug 29-Sept 6
The hopes for another good week were successful! This week was as busy as we are allowed these days and it felt so good! You know I like to feel that hustle and bustle running thru my veins!


We fit in an impromptu family photo (thanks to daddy's tripod) for T's class. Even Bryley joined in if you look at the bottom of the pic. It's cute-she has a variety of picture frames all over the classroom, one for each family, for the students to view whenever they want. It looks great! Might have to steal that idea for my class one day.


Grayson continued to don those chubby steroid cheeks and sport them with pride! I love them!

He mastered his NEW pout face! We noticed he caters his head tilt to the left-the same side his IV connects to near his collar bone. I remember asking Nurse Jenny about that in that 2nd week of outpatient clinic when we noticed he cocked his head to the left as he walked around. She described it as how some kids just baby the side of the port, "nurse it like a broken wing". Interesting. Well, now he does this:

Hard for us not to laugh at in the middle of any emotional upset.

He continued to eat like a champion. He was still consuming anything and everything every 40 minutes or so and drinking milk as if we would be suffering from some type of cow depletion in a matter of days! His tastes that week included: mac n cheese, hot dogs, crackers, cheese cubes, sunships, green beans, spaghetti, pizza, meatballs, adobo, popcorn (pirate booty bc I was afraid to give him the real stuff he's used to in case his gag reflex was a little more sensitive), and all of sudden some SWEETS like applesauce, plums and strawberries. Fresh fruits get more complicated for me time wise bc he cannot eat the skin of any fresh fruit of veggie. The airborne chemicals and touchy feely germs of those who "tested" the produce are harmful to his immunity. Do you know how tedious it is to cut the skin/seeds from strawberries and then convince him it is the exact same thing T has? But in the end we were pleased he was chowing down, pooping and peeing-all we need to be sure the pipes are working!

That Monday we were scheduled for a bone marrow and spinal. Another morning in which he could not eat or drink anything from 4 am on due to the fact we would receive morphine and versed (Versed/Midazolam is given to children before medical procedures or before anesthesia for surgery to cause drowsiness, relieve anxiety, and prevent any memory of the event. Midazolam is in a class of medications called benzodiazepines. It works by slowing activity in the brain to allow relaxation and sleep). This makes for a very crabby G in the morning while still trying to get T ready for school and feed C...and still get ourselves ready.

Charito and I met at the hospital. We walked in completing our usual routine. As soon as G enters the parking lot or lobby he tells/whines to me, "No medicine. No Dr Kwon. I want McDonalds". We have to carry him into the exam room bc he would much rather be elsewhere. He asks for Mcds bc that is our treat after session. He still will not choose a gift from the treasure box so Mcds coupons it is. We were met by our fav Nurse Jenny. She came in with a huge smile and said, "Good news! Pause We are in remission!" I didn't know what to do. I know my jaw dropped and I felt a rush of tears but something told me to not bother celebrating w those tears. I remember locking eyes w Charito. Our eyes smiled but hearts said something else. It was like there was guilt for feeling happy about it. But it was the "IT" we didn't understand. What did this mean? And before I knew it we asked that question simultaneously. She explained it meant that there was an absence of leukemic cells in his bone marrow, generally speaking(I could get all scientific and explain the percentage that they look for in relation to body mass and blood conditions and the number of cells, etc and what percentage we were at in dr terms but really its all junk). Fantastic news. That means everything that was being to done to this point did exactly what it was supposed to do. We were on a great track. She gave us this glimmer in her eyes that told us it was ok to be happy for this. We still had to go thru the timeline as described weeks ago but this was all great news.

My error-Remission news occurred on September 7th! But you get the point!

SO remember this paragraph you just read for the next post bc I for some reason can't copy and paste it like I want to-mentally place it there when I mention it...that's your homework people!

Dr. Kwon entered and exclaimed we were done with induction. No more steroids. I was confused for a bit and realized it had been over a week since I looked at our timetable. It happened so fast. The induction stage was over that day and we began stage 2-Consolidation next week. 29 days gone and went. No more steroids for awhile. He went over the drugs that we would be introduced to, new timeline and warned us it would be intense. The drugs and Grayson's reactions to them, that is. I took a deep breathe. Feeling stupid deep down. And I thought the past few weeks were difficult? Alrighty then!

He left the room and Jenny could tell we were trying to take it all in. She is great like that. She dumbed it down for us. Her one liner sums it up pretty well-"it is gonna kick his little butt". She was being honest. She sees hundreds of kids and knows what is around the corner. But in my lil guy's defense-she reminded us that all the side effects he was supposed to display during induction he barely did. He wow-ed them. So he could do the same wow-ing this time around but we should be prepared. Consolidation was going to be like he had the flu for 56 days straight. Achey, nauseous and constant low grade fever is to be expected but to immediately call if it even tapped at 100.4. Huh, and I was already checking his temp 3 times a day for habit and never a one. She also told us there would be chemo drugs we would be administering at home thru his port for several weeks. Okay?! And this was in addition to the oral drugs he was to receive. She told me should would teach me how and it was no biggie. And he just started walking again with support. Would the achiness take that away from us again? I still didn't know what to expect. So they handed us the new timeline for stage 2 of treatments-56 days. A new set of routines, drugs and reactions. Yippee!

We finished up treatment with the usual bone marrow and spinal. This time the research coordinator remained in the room to receive the handoff of samples herself. I couldnt help but think, "Yeah, that's right...you take those leukemic free tubes and go help my baby get cured as well as many other kiddos!" I helped hold him in his C-shape as Dr Kwon did his thing. I still like to watch the procedure. It is amazing to me. And my lil baby does so well. He doesnt even know what is going on behind him. And under these light sedatives he is awake and silly. He is lovey dovey with tons of "I love you"s. He also gets the cutest hiccups and giggles. Once again he did great. After 30 minutes he is allowed to sit up and eat and drink and duck out. It was a nice early day. As we got our stuff together he chose a Target gift card. I joked that we could go shopping at midnight when no one was around! Jenny realized then she did not give us our lab results earlier. She joked back with a comment about more good news. And it was-we were not neutropenic! Neutrophils (ANC) went from 290 to 1,410. OVER 1, 00!! Hemoglobin was over 8 (down from last week but still safe) and platelets were 268 (up from last week). We could actually enter a store! Yup, it was a good Monday. And to top it off-he did not throw up from the morphine that day like he had last week. He was actually in a great mood all day long. Wondering what ol' chubby cheeks weighed that week? 19.1 pounds. He had been teetering 18.2 and 19.4 the past 5 weeks. He was in the safe zone.

Tuesday-You know what we did!!! Went to Target. It was awesome! It was the first time G had been anywhere else other than a doctor office or drive thru in 5 weeks! I was so giddy. I had my shopping buddy back. We were probably there for almost 3 hours. Every corner we turned he squealed and narrated to what we saw, should buy, what was on my list, etc. The smiles and laughs were priceless. Mommy, I see a table, lamp, milk, cheese, bandaids and on and on . He pretended to drive the cart and made vrooom sounds as I pretended to make sharp turns and drive fast. He was so tickled pink and thought everything was silly. I was finally out doing what I had always pictured I could do while T was in school- a stay at home mommy kinda thing. I was silly and tickled pink as well. We took our sweet time and bought the place out. And yes, there were plenty of toys in the cart for him and one for T, too. He even remembered how he used to help me out by placing our items behind him in the bigger section of the cart. Only this time the towel I had him sitting on to soften that boney butt of his and his lack of arm strength these days turned that job into more of a toss! I didnt care. He was thrilled to help mommy.

More train playing with his new Target purchased trains to add to the collection!

It was great normal kinda day!

Wednesday we had visitors!

Auntie Katie came to hang out and boy have I missed her! That is G and her daughter Addie. Isnt she beautiful! She dwarfs G and she is only 2 mos older than he! We had a blast just catching up. The adult distraction/conversation was so overdue for me!

We called grandma and grandpa alot!

We snuggled a plenty! The hospital brought on some changes for G. Now he likes blankets and pillows and cuddly things. Nemo was been on our movie hitlist for weeks and when he found T's Nemo he asked to bring it to bed with him (our bed of course. Even tho he had been feeling really good the past 2 weeks the first two nights after treatments he sleeps with us. The other nights I felt comfy enuf for him to sleep in his own room). He even likes to cuddle with us now. That was never the case before.

This evening he was retelling the Nemo movie to me.

Pausing for Nemo kisses.

Thursday

G was still feeling really good. No nausea and eating well. Nice energy level and great mood. Still not walking on his own but that is what I have a stroller for! Caden had his 6 week appointment that day. Since G was feeling good I took him with so Belmonte could see him, too. G doesn't get to see him anymore and my kids adore the man, as do I. Both G and Belmonte lit up when they saw each other. Belmonte was so pleased to see him in such a good mood and so talkative. I gave him the brief on G and T and then we moved onto Caden. We had a great talk. I told him how grateful I was to have him meet us at the door and break the news to us. He said he would have had no other way. He asked how Charito and I were doing. I told him he has a fan club consisting of our family and friends that will one day take him out for a drink. He slid in the comment that THAT weekend he needed a drink. I cannot tell you how much that serious type joke meant to me. It got to him like it did us. That IS a good man, a GREAT man that I am blessed to have in my life, OUR LIFE. He asked about Caden's personality. I responded with a chill and go with the flow kinda baby, a good baby, a happy baby and a great sleeper. He was like an angel. Belmonte joked that he kinda had to be, right? I agreed. I blessing in disguise to be such an easy baby in all this.

And then that GREAT man gave me some good mommy news I needed in my life. All the stats were fine w Caden (he and I were pleased) but his motor skills were off the charts. My 6 week old had the motor skills of a 4 mos old! I mean I knew the way this kid held his head up amazed me from day one. More so than T and G ever did. But I watched my lil guy literally prop himself up on his elbows and forearms and raise that head higher than I had seen him do w me in recent days. Then he turned left and right as he had been doing at home. Then kicked up those feet and scooted those legs attempting to push forward. Belmonte declared him to be an early crawler one day and a 4 mos old. I loved it. I didnt feel an ounce of guilt for not giving him his tummy time in who knew how many days. I usually know that stuff. When and how often I do what w my babies. But poor Caden wasn't getting it daily. I couldnt pull it off. My baby boy was taking care of his own. As if to say "dont worry mom, I know you got your hands full. I got this one!" I soooo needed that moment that day. To know that Caden wasnt suffering in all this. He was AOK. And seriously people-if you want to see my lil freak of nature do his thing-stop on by. It is adorable!

Before we left the office Belmonte hugged me and told me if I ever needed to talk he was there to listen. Yup, I have the best pediatrician ever! Hands off! He is mine!

Friday, Saturday, Sunday and Monday (Labor Day)

His appetite decreased a bit but nothing that alarmed us. After all, he had not been given any steroids in a week at that point. His mood continued to be great and there was so much of old G for us to enjoy. It was a wonderful week. We have learned to get past his mood swings as best we can. He cannot control them. He is impatient and eager and stubborn more than ever. The drugs do that to him. We cannot get upset over every little thing. This lil man has no control over anything that he is going thru and all he wants to do is control the things he can. Like the movie of the hour, toy of choice and anything else going thru that mind of his. I have learned to pick our battles. He cannot have everything he wants all of the time. Always was our rule and still is. I will not let cancer change his entire personality if I can help it. I have two other boys with wants and wishes, too and G needs to still see that in his life. As much as our lives are directed by his needs I try my best to alter the directions slightly in order to shape our family, our morals and our decisions. I am trying. No one can be left in the dust while another is ahead of the crowd. It is just not the way Charito and I have done or will do things. We just have to try (that is my promise to T and C).

Saturday

This was a day forever in our hearts. We headed out to Morton Arboretum. Charito had never been. And it was still a safe place germ-wise to visit. The weather was gorgeous and well, my kids love nature so it seemed perfect. Our first family outing in 5 weeks! Hooray. It was glorious.

Words cannot express the emotions, laughter, smiles and freedom EVERY ONE OF US felt (okay, maybe Caden not so much but like I said he goes w the flow in this family! Happy camper always). The freedom to forget for awhile what we had been thru the past 5 weeks. The freedom to let the air in. The freedom to forget the bad for a bit and remember the some of the strength that had come of all this so far, no matter how little it may seem some days. I truly didnt realize how tired I was, drained til that day. A day I had the chance to step outside of the "new normal"of meds and my mommy nursing degree, T at school all day, the life of a newborn and oh yeah, everything else in between like cleaning, shopping and laundry. And not to forget the gratitude for a day like this. Gratitude toward the people that helped us get to a day like this. To be around others even if they were strangers. That feeling I had at Botanic Gardens...I could see it in Charito now. We just kept catching each other with our eyes/ our secret language and it said it all. Every moment we watched the kids take part in we felt the same way w each reaction. We didn't have to speak. Just those glances were enuf.

There was also something about that place...are moods...nature...god...I am not sure, but G was motivated! Motivated to move. He ACTUALLY wanted out of the stroller. New to us! He wanted to experience what T was taking part in, just like the good ol' days. Such strength and awe beamed thru his big brown eyes. He was so ready. As long as mommy or daddy were there to hold his hand he wanted to do it all. Even though his gait was wide and full of so much effort, he did it all w a smile. I wasn't going to be picky just thrilled he wasnt lying on a couch w little energy. He was out n about!!

Again, I cant begin to express how this day felt but these pics should say it all....

During this shot I really wondered what he was thinking about...pondering...

I loved the sense of rushed exploration in his body movements during this shot. You just couldn't find the pause button on that mind of his!

At one moment I glanced over at Charito and he seemed intent to capture this shot. At the time I didnt know what it was. As he left the area I walked over to check it out. My breath paused for a second. I knew then that this day was meant to be. It was for us. As much as I was missing my family and wishing my mom and dad could see us 5 capturing our day of freedom I knew they were with me. My mother loves butterflies and anytime, ANYTIME, I am thinking of her in a moment I need her most a butterfly has appeared. This was our moment. I love you, mom. This pic is for you! Surprise! From your G!

He was so excited to go on the slide. Because he couldnt climb the slide access himself I had to walk up the wall and dump him at a halfway point onto the slide. He thought he was doing the whole length of the slide. It was quite the workout.

Sitting up high looking for 'Tis Tis' (Triston)

After the first fort that T went on n G watched, he would NOT go back into the stroller. He was so content leading daddy around.

I love the way he looks up at daddy in this one!
I want to enlarge it in black and white!

Look at that face! I want to kiss it all over!

G saw some boys climbing on these rocks that were nestled in a stream. He told us he wanted to go there. I led him over. He indicated he wanted to make it to the other side. It required long steps and rocky ground to do so. He insisted. I held onto his waist and off he went. He kept going. Heading to the rougher rocks and wider, larger stones. I was nervous I wouldn't keep my balance. He grunted and screamed for more. The whole while I thought nothing of comparing these little rocks (to me)/huge rocks (to him) as his mountains. The mountains he needed to conquer in these upcoming months/years and those he had already surpassed. Those tiny toes, feet and skinny legs still had a long way to go. I want his determination to remain the way I saw it on that rocky stream. My warrior. My conqueror. It was another moment I wanted to cry for him and how he keeps me going each and everyday. Look at him go! I will be enlarging this one in black n white, also.

Looking up at daddy,"I did it!", for the perfect shot!

Me and my boys!

We had so much fun. The Morton Arboretum left such a wonderful place in our hearts that we purchased a membership there (which works at Botanic, too). We figured if places like that can make us feel that good we are in! Therapy anytime! Besides, they are also great places to go when G is neutropenic and we have to avoid those crowds. At least we know the flowers and nature and god won't scare us away. And better yet, fall is coming and it is my fav! I can't wait to return for Autumn Reveal...with my boys in tow!

August 23-29

It is Monday, September 8th. I am writing the next two weeks' posts "in the past". I know I am behind in keeping everyone updated but I just had to soak up these past two weeks and all the goodness that came with them. I apologize for any confusion of my tenses in the next two posts. Here goes...

I hate this pic of him. This is the look I referred to in past post. This is what he looked like that week +. But when I think about his skin and bones this is what comes to mind. He was so upset bc I made him walk to the hamper to put his clothes in. You can see the weight loss in his face.. The protruding cheek bones and skinny nose. Horrible. Can you see why we were so concerned about his weight now?! And to add that he was barely walking at this point made us nervous.

We asked the doctor about his weight on that Monday and he had actually gained half a pound ina week's time. They explained that what we were seeing was loss in fat tissue. Not muscle atrophy. NOW that made sense. That was exactly what was missing. I just felt so bad for him. It could not have been comfy to sit on anything other than a soft cushion bc his butt bones protruded so much. It looked so uncomfortable and achey. No wonder he didnt want to sit on the floor without a blanket. Not only is he constantly achey body all over but not he has not meat to cushion everyday movements. Ahhh.


That Monday treatment day we had some good news thrown our way. On Aug 16th there was a total of 10% of blasts (leukemic cells) found in his bone marrow (cant remember if I stated that in past post and remember we were at 85% near diagnosis time). As of Aug 23 he had 3% visible blasts in his bone marrow. Isnt that ridiculous how quickly these drugs do their thang!? In the meantime messing with other numbers. His numbers were "good" but we were still neutropenic (ANC neutrophils at 290 dropping from the previous week-they want over 1,000 to be in the safe zone). I asked if a place like Botanic Gardens would be good place for an outing (if he was up to it) and they said it would be perfect.

We also brought a visitor that day to clinic with us. Big bro Triston. He had been asking me over the weekend where I go and what we do when I take G to see Dr Kwon on Mondays. I knew this treatment day was only chemo drugs thru the IV/port so it was an easy one for T to observe. He was familiar w what was planned for that day bc we had been reading CHEMO TO THE RESCUE off and on. T loved this book and I told him he could see the pictures come to life at clinic. He seemed interested. He was excited that day to be going out w us n G. It had been weeks since the 4 of us had been in a car together. I was excited, too. I miss T n C so much on those treatment days. Too many hours away from them.

I told myself that whatever T got out of this experience was fine w me. Who knew if once there he would be ancey? Not want to look at the nurse access his port and such? So I stayed open to it all.

It went as I figured. I narrated as Nurse Jenny did her thing and used the same terms from the book. It wasnt hard bc Jenny uses them as well. T would peek here and there but was not super engaged. It reminded me that generally T does not like to look at G's port. He will glance at it once in awhile and make comments stating the facts of it usage as explained to him but to stare at it forget it. I heard him mention what next steps were while Jenny did things but that was about it. Then I remembered that the Child Life Specialist, Ahrem, had told me about a doll that she could show T when he visited that allows him to see and touch a port and access it like the nurses do. She went to get it for me (she is typically at all of our appointments during the first few minutes. She blows bubbles and puts on Thomas movies for G to welcome him and distract him from the poking. She is wonderful).

Ahrem walked T thru the stages of port access and why, like she was quizzing him. It was cute and he was so engaged. He kept telling me he was pretending to be a doctor. They poked the needle and the "tubey" thru the doll's port and then pushed water (pretend blood medicine) into the syringes and tubes. Our little scientist enjoyed all that stuff.



We ate some snacks together, watched Thomas and played some games. Before we knew it it was time to go home. As is our tradition-we picked up Mcds on the way home (G still wont chose a toy from the treasure chest after each visit so they continue to reward him w Mcds gift certificates and boy does it make him a happy camper).



That night I attended Parent Orientation at T's new school. By the time I got home at 8 I was exhausted!

Tuesday

This was our lazy day at home. I needed to catch up on laundry and school stuff for T. We had orientation together the next day and I still needed to get some things together for his class.


Boy did his appetite pick up that day and sailed thru the rest of the week. It was official! The unquenchable steroid appetite they warned us about had begun! For most of that week he actually sat at the dinner table w us. That was a lil sense of "normal" we cling to these days.

Wednesday





That morning Auntie Amy watched G n C while I headed to the hour long orientation w T (are you getting a feel for how limited I leave G w others? It s so difficult for me). It was nice to have all that time w T tho. He was ecstatic to be with me. I kept telling me how much he loved me on the way there. We went thru a mini version of a typical school day and met a couple of his friends. I was so happy to hear that a couple of boys from his Tball team were in his class. What a relief. And even better-his teacher classroom assistant is a friend of ours from the neighborhood and close friends. A guardian angel in disguise and such a sweet person. I as a mom was sooooo lucky! Place my HUGE sigh of relief right here******.


After orientation Amy and I made a day of it. It was technically T's last day of summer and we wanted to make it special. None of us had been out of the house in so long. She agreed to tackle the chore of an outing w me. We headed to Botanic Gardens. I figured it was a safe place to be- no big crowds, no gross toys or contraptions to touch and worry too much about germs. And I remembered there was a train exhibit the boys loved. I could not contain myself. It was both a mental and a physical feat. Getting all our stuff together, phone numbers in case something happened w G, the thermometer, meds, plenty of fluids all the while packing up for T and C as I usually did. Then remembering to check G's lips for paleness (indicative of a drop in numbers and need for transfusion), urine output, and his energy level. Not pushing him was the key. He already wasnt walking but I truly felt the outdoors would be some sort of motivation for him for a new found energy. Not to walk but just to keep it up and in good spirits.


I could tell G loved having a car full again. He listened as T n Ayden goofed off in the back. He also reminded me when "my baby crying" (how he tells me to attend to C!) and snacked away. Upon our arrival, we headed to the train exhibit first. (G's love of trains has increased dramatically since diagnosis. Movies and trains comfort him. And his favor over Thomas-well, I cannot deny it. We watched so many of those movies provided by Child Life in the hospital. So many that by now any room we are receiving treatment in-the staff knows him and had a tv set up w a Thomas movie in it already even tho we bring our own stash of movies back n forth! And as you all know I despise the Thomas cult but for my guy now/these days...anything. I swallow my Thomas annoyances and have given in to learning those stupid trains names. ALL 1, 286 of them!) I got a lil nervous when I was told I couldnt take the stroller in. G wasnt walking and was not very comfy being carried bc it hurt his butt bones. But we had no choice. I was able to get him to take a few steps but he was totally content in Auntie Mimi's arms (Amy). Needless to say the big boys had a blast running back and forth catching every train in sight. G had a blast watching them be their goofy selves!


I cant even tell you how wonderful it was to see the smiles on all of the boys' faces. It was "normal" feeling. The way G's face lit up when he saw those trains was priceless. So many times I stood back and watched them just be themselves and I had to fight back tears. The combination of all my fav boys giggling away and that sunshine enveloping me at every turn was all I needed. All we needed to re-energize. To keep up the fight. To be out in public. How wierd it was that as I teared up so often not one stranger beside me knew the depth of tears. The importance of this big day. It may have been an everyday type of outing to the person next to me (even to my Triston) but such a monumental day for us Cacals. I was also so grateful to be sharing it w my fav sister and my Ayden. The only person missing was daddy. I sent him pics and texts all day long. I hated knowing he was thinking of us constantly, worried sick the outing would go well, and of course missing us tremendously. That thought alone also made me tear up a few times.





After trains we headed to find a quiet spot for lunch. I could tell G was looking tired and needed something to perk him up. All this time he had been snacking off n on but we needed a meal. I had packed up some Lunchables for the kids. We found a quaint "end of the road" square-like haven inside the garden labyrinth. It was all for our taking and it remained all ours throughout our lunch.

This spot will continue to be my escape place each time I visit. It is forever etched in my mind. There was something about its being. The textures and layers told my story. Pointy, rough, dry leaves (MY PAIN, MY CHAOS, MY CONSTANT CONFUSION, SCRAMBLED MAMA BRAIN, MY INJURIES UNKOWN TO HEALING AT THIS POINT). A pillowy soft grass covering cradling the rough exterior of the agave plant (THE HUGS, CUDDLES, SMILES AND LAUGHTER I CHERISH IN MY BOYS THAT KEEPS ME GOING; MY TEAMMATE AND HUSBAND AND OUR QUIET GLANCES AND EMBRACES THAT SAY IT ALL-WE ARE GONNA MAKE IT THRU; THE SOFTNESS OF G'S BABY SKIN THAT I CARESS ANY CHANCE I GET; THE HUGS I WISH I COULD HAVE FROM MY PARENTS ON A DAILY BASIS)

The 3 boys dug into their meals and baby C got his bottle fixin'. One of my (and Amy's too) memorable moments of the day was when the big boys made silly faces w their lunchmeat.






And guess who copied them? Laughing all the while he created the best pirate pic ever. This pic is my inspiration forever, in memory of that wonderful day!

Isn't it fantabulous?!

Other great pics of the day....


Then I attempted a mama n boys pic...yeah, right! G was so done by that time (as you can tell!)

Hey, at least I tried!


His steroid appetite kicked in big time that week. He was eating something/anything in sight every 45 minutes! The steroids brought on these need for sodium. He was unstoppable. Hot dogs at 3 am, crackers and tortilla chips, cheese, fries and chicken nuggets. The only healthy thing I could get him to eat was green beans bc they were salty! And he drank milk like crazy! It was awesome!

The rest of the week was full of walks and outdoor yard time. T headed to school for half days on Thursday and Friday. There were tears. I fought mine back. He just kept saying "I just want to be with you, Mom. I dont want to be lonely". He was so emotional. I had not seen him like that in a long time. I just reassured him that I would be there to pick him up and it would all be ok. And each time I picked him up he told me he only "cried a little" and he would "be braver tomorrow". But he also told me how much fun he had and dictated each and every event of his day. I knew it was the initial separation that was hanging him up and I couldnt blame him. We have seen him regress emotionally since the diagnosis. Yet, it never crossed my mind he would be upset at arrival time those first few days. He was so confident at his last school. But, again I had to remind myself that mommy and daddy were not the only ones going thru something. It was going to hit him in phases, too. School and all the emotions and changes that come with it were the perfect breeding ground for his anxiety and insecurities. It broke my heart beyond words. If it wasnt for walking back home with Najette that day I would have balled my eyes out the whole walk home. She kept me occupied. I was so heart broken over T all morning that I had Najette watch the boys as they napped and I ran to Jewel and bought T tons of books n toys and a gigantic cookie pie w Sesame Street characters and a school bus on it. It said "School is Fun". The kid had my heart strings HARD and I wanted to make it all go away for him. I spoiled him like crazy. I couldnt help myself. The past month's of chaos and utter emotional mayhem in our home was poking at my lil guy on a day that was supposed to be exciting and that made me so mad. I hated cancer so much that day! Hated what it was doing to our T. Hate that that is how I will remember is first day of school!
By the following Monday there were no tears. I could see he wanted to cry but held it back nice and strong, even tho I told him it is okay to be upset. I told him I miss him everyday, too. I told him I get happy when I know I am going to see him at the end of the day. But he was brave just like he said he would be. I just had to watch that hesitant little body leave my hugs and walk toward his teacher. He found his own strength and that made me ever so proud of him! I even got several thumbs up my way (his lil way of saying-I got this Mom!).
Anyway...
G was soooooo talkative and silly that week. So many glimpses of his old self, reminding us that he was still in there. Continuing to wow and amaze us. That's my sushi!
It was such a good week and we were crossing our fingers for another one! But blood numbers always tell the story these days.