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!