Randoms

Started on Wednesday, Nov 10


Thoughts that have been roaming for weeks or just the past few days...

• Odd to think we practice his colors, letters and numbers in the hospital as well as home. He is good! He is into crayons, markers, stickers and aquadoodles.



• As much as he has been thru, Charito and I just discussed last week how his speech continues to grow. Longer sentences, clarity (other than the typical articulation sounds at this age) and humor. We can't seem to find the mute button at times. Even the hospital staff comments how talkative he is and cannot believe he just turned two. Comments like that make me feel good. It is not until I hear a comment that I am reminded that he is still plugging along at 2 yr old pace. No regression so far. Always a concern in the back of our heads.



• It's like straight out of a Halloween movie, a cartoon-the neon green goop or poison. Yup, that is Methotrexate for us-this phase's "poison" of choice. Check it out. So wierd to watch it pump through him for 24 hours straight. Now we monitor the levels remaining in his body to be sure it is be flushed out in his urine and stools. His level as of this morning is 69.19. He will receive the Leucovorin in the next hour.




• He had a fever of 100.6 as of 4 am this morning. That led to urinalysis, blood culture and CBC. Annoying blood cultures take a minimum of 24 hours and a max of 48 hours if they dont like what they see at the 24 hour presentation.



• His chest and lungs keep going back and forth between congestive and clear. They explained that since we are pumping him with fluids his lungs will expand. But they are pretty sure this is his asthma acting up. He does much better after a nebuelizer treatment and I think I'll be looking into treatments at home. I think this is something we will be battling all of winter.



• I hate that I have been unable to take advantage of the gorgeous weather. There were so many in October and pneumonia had us down. And now this week we are stuck in the hospital. No fair. No Morton Arboretum. No Botanic Gardens.



• Will I ever get back to my original blog? The "happier" one. The one I started when G was born. Still trying to find the right post to return to it with.



• What will G be like when he starts preschool? Healthier? Restrictions? To what extent?



• Will T need therapy one day? I know he's a strong boy but you never know what this is all going to do to him no matter how hard Charito and I are trying.



• I tell myself everyday that are situation could be worst off. And I REALLY mean it and believe it. There are so many "ifs" and "lack of" that do not apply to us. I am so thankful.



• Amy reminded me of how good a patient G really is. She jokingly called me to say I should be thankful G is as calm and oriented and familiar with all he endures at clinic and the hospital bc she and Neal BOTH had to hold Ayden down for a flu shot. I had to laugh! What a perspective.



• My mom always told me it took someone special to teach "special" children. I have held onto that phrase with each new student that entered my life (especially with the difficult ones!). I am grateful that I have taken my teaching strategies and used them with my own children. Not bc I wanted to turn them into students. But bc I really dont know how to turn the structure/expectations/prompts/cues "off ". Aerum brought his up to me the other night. She was complimenting the way Charito and I handle all of this. How we haven't backed down in our parenting style and still keep up with the rules and expectations that existed for G before cancer. I thanked her and explained how I do not know how to "turn it off". And besides-it works! It is bc of these strategies I have polite, productive, well-behaved children. All it is is my teacher mode with a consistent mommy touch. I know there are people out there who think we are tough on our boys but they dont live in our footsteps daily. We do what works for us and them. If we saw our kids struggling or hurting bc of our parenting methods we would have changed things long ago. And I know I am doing something right when I can spend as much time as I do in a place that most see as "doom and gloom" and both familiar faces and perfect strangers compliment us. It makes me smile from the inside out.



• I hope no one thinks I brag too much about what my boys have mastered on these posts. It's just me documenting all the positive. The things that keep us going. Those things are moving along the way they should be and don't have us worry all the time. It helps to be able to check this or that off the worry list.



• Grayson is so familiar with this place that I just mention our 2 yr old medical phrases and he knows what to expect. Like-"we have to go and see the blue birds" means we have to stay in the hospital on the second floor. Then I mention a few of our fav nurse's names and he asks if we go this way or this way (left or right) when we get off the elevator; "We are going to see Nurse Jennie" means clinic; "We need red blood" means a transfusion. A bracelet to G is his ID tag that he prefers to wear on his ankle ( I guess it's an anklet then, huh?). He has all the nurses wrapped around his finger that they allow him to access their handheld scanners and press the start button for his ID matches for meds. They gave him his own REAL stethoscope today! He tells them where to put his blood pressure cuff and heart monitor as soon as he sees a nurse pull them out. No complaints (unless he's sleeping then he is ticked off). So cooperative. When I say "We are going to give Elmo a hi-five" that means we have a long walk to the other side of the hospital (we walk past the gift shop w a huge Elmo balloon that he hi-fives every time). He knows when I say "Your tubey is not long enough" he needs to freeze bc his IV is hooked up to the pole and I have to catch up with him to give it some slack. We use words like "pokes";"listen, listen" for stethoscope use; "check ears" for otoscope use; "beep, beep ears" for thermometer use or he tells them he wants it taken under his arm if his ears irritate him; "take a picture of your heart" means a chest xray; he knows only Dr Kwon or Goodell can say when it is okay to eat following a spinal; and I prep the discharge nurse to say "1,2,3 Time to go Home" as our cue that he can actually walk out the door with no interruptions. These phrases make this process so much easier.



• Today Triston sang a song to me over the phone. I loved it!



• Grayson asked about Bryley and Triston today...he must be missing home.



• I had a great visit from a friend today and it was so nice to take that break. I don't do it enough. Thank you, "Speech Amy"-as Triston refers to you!



• I haven't showered since Monday morning and I don't stink like mad, yet. Do I, Amy?



• Charito had to email me Triston's hot lunch menu for me to yay or nay the list. So wierd to communicate that way so we could complete the order for the month of Dec.



• I may not be home til Friday or Saturday.



• I don't know what our plans are for any of the upcoming holidays and to be honest-we can't even wrap our heads around it. We have ideas for the boys and look forward to being "Santa" but I can't even look past next week in order to think about when the tree will go up and when we will shop. But I am excited to do this with my hubby...we are fun Santas. I learned the sneakies from the best-my parents. We use wrapping paper with Santas on it specifically for those gifts from Santa. I even write the gift tag w my left hand for Santa's signature. I love doing it! Charito thinks I am nutso sometimes.



• Today (Thursday) he needs a hemoglobin transfusion. He is sleeping soundly and we are hoping the creeping fever we have been watching all day does not reach the "official" temperature mark. He has not had one since Monday.That would stink-home later.



• I called to check on the baby just now and he was babbling up a storm so loudly! I miss him.



• Earlier today G had the chance to play bowling w Sam the dog ( one of many therapy dogs here).




• I kinow it may sound odd but I actually prefer not to leave the hospital room. There are so many volunteers and people stopping by asking if I need a break. If I want to head upstairs for a bit. First off, I know if you are a volunteer in a hospital, especially PEDS, you are a kind-hearted soul but I am sorry-I cannot leave my baby boy with a stranger. I usually wait til a nurse is in the room or Aerum or Alana from Child Life are here in order for me to run upstairs and get food. Otherwise, I just get sneaky with G's orders and leave some food for myself. There are refreshment down the hall 24-7 that I tap into as well. Leaving the room reminds me of where I am. I smell that hospital stench. I see other children suffering of one illness or another. I am reminded of the lines and waiting for elevators and other "normal" stuff outside this room and it is depressing. I would much rather remain in our room, take care of what needs to be taken care of and get home. I am in a better mood when I can stay here thinking and caring for our business. Don't get me wrong-I do get G out and about. There are so many opportunities for him. Child Life hosts so many activities. Pizza parties, art centers, play rooms, bringing toys to our room and offering play buddies. It just isn't as easy as you would think to walk outside the room and into those hallways.



• I miss taking Triston to school. I miss picking him up. I haven't seen him since Monday morning. He and I have a date for this weekend that is for sure!



• I miss the hugs and smooches from Charito. At least I got to see him tonite (Thursday). He brought us Portillos and hung out a bit-Thx to Auntie Najette for playing mommy to my other two boys for the evening.



• Sometimes I wish (even though I miss my home) that I could snap my fingers and find ourselves in a new home with a new beginning. Our dream house.


• It is Friday now and we are not going home until maybe tomorrow. That toxic level of 69.19 dropped to 1.6 by Thursday morning but then hung out at 1.1 all day. This morning it is 0.4 and they will discharge us at .1 or .2, it concerns them that the level seems to plateau at points and this is one drug they dont want hanging out in his system longer than it needs to. We will see if after more flushing and Leucovorin if it drops to that magic number by tomorrow morning. This is ridiculous but it is what it is. I just hope this is just a path the Methotrexate takes bc this is our first "batch" in this phase. It would be a very long phase the next two months if this is the pattern his body takes on with each "batch" every two weeks. We have already been here 6 days and that pattern would take quite a toll on all of us every two weeks. I know it is for a good reason before we are discharged but it sure complicates things at home, me feeling so far away.


• I have been crying off and on all day. T had a rough week at school and I cannot even express my pain, ache and tears for him. It was bound to happen. I know it could be worst but it still hurts. None of this is fair to him. HE is the one who is going to remember all of this. The scars this will leave on him. As much as Charito and I can plan, predict, prepare him for what the next steps are we cant protect him from the unknown. Like all of a sudden my being here what should have been 3-4 days but has turned longer bc of the unknown way G's body excretes the drug. Who knew? My poor to-be-5-yr-old hit his own emotional, frustrated, worrisome wall this week and I HATE that. He is hurting and I want to make it all go away for him! I HATE a lot of things right now!


• On the flip side T's teachers are great. We have been back and forth over emails since last night and she is brainstorming right along with me. She truly cares for him and understands the whats and whys of our situation. She is fully capable of walking my baby boy through this and I just hope it goes as smooth as he deserves it to be.


• I just had to ask my mom if it is normal for my hair to fall out everytime I run my hands through it IF I haven't washed it in 5 days! Apparently, it is. Good to know bc I thought I was going crazy.


• If it is not a fever we are hoping doesn't show up it's his asthma flair ups. He woke from his nap a bit ago sounding coarse. This environment does not help. Just got a nebuelizer treatment. We also receieved his nebuelizer for home today. A home-health assistant tutored me on it and off he went. It is a modern, compact contraption. I think I am gonna like it!


• G ate really well today considering he preferred Pediasure over most foods yesterday. He even ate quesadillas today. That's a first.


• Talk about irony and need-T's day was better today but we still have lots to conquer. I was struggling with this all day. Out of the blue Alysa offers to take him for a playdate today afterschool. He has missed his friend Jackson so much and vice versa. They have been buddies since Farnsworth. I was torn on what to do. Would it seem like a reward to T after the impulsive actions he displayed at school. But then it hit me. This offer from Alysa was for a reason. He needed this. An old friend. A piece of his past, before leukemia. And I was so glad I agreed to it. I guess he and Jackson continued to tell each other how much fun they were having with each other. He even told Alysa he misses her. Not only were T n Jackson pals at Farnsworth but Alysa drove T home everyday and set up playdates. He has always adored Alysa and had this bond with her. That mommy thing I could trust in. They are amazing! The irony-Charito later tells me this evening that this morning on the way to school T asked who was watching him afterschool. Charito told him Lula. T told Charito that Lula should go home to rest and Alysa should come and watch him. It was meant to be! He tapped into a time when things were not confusing, frightening, unpredictable, etc and shared that with Charito. So, Alysa and I brainstormed that whenever G has to be in the hospital during this phase (bc it will be so frequent) we will set up times for T to get out of the house and see them. That way he has some predictability, comfort, something to look forward to. I wish I could have given that to him this week. The unexpected setup of our arrival on Monday didnt allow us to plan anything. We scrambled around all week trying to get things covered. At least we an anticipate our next hospital stays with the hopes of no fevers or serious complications that change that timetable. We NEED to do that for Caden and Triston.


• I am trying to get G to relax now and he is wide awake. I am so tired. Another day of no nap due to so many interrruptions, my mini-meltdowns and thankfully Child Life Specialist "friends" to hear me out. There really is alot of support here that I can depend on.


• Til tomorrow (Saturday) for more ramblings... and hopes that toxicity level is at .1!!!!!!!!!!!! I have to adorable boys waiting for me at home, oh and a big brown boy too.
• We get to go home today! It is Saturday now and not without any drama. Hours before I was to hear what that magic number was Grayson developed a bloody nose. That led to him rubbing his lip in frustration and that began to bleed. Before I knew it he started throwing up blood. I yelled out to Nurse Christina. She saw the sheets covered in blood and yelled for a nurse to get his platelets numner to her NOW. We needed to know how long this might go on. If that number was low he was not going to clot quick enough. After about 8 minutes it stopped but each time he cried it started up again. By the time Dr Melanie (a PED resident that we are now in love thanks to this week's stay!) showed up it stopped and we were just dealing w a sad, scared G sitting in my lap, trying to calm him down. We hypothesized that when I used the suction on his nose when he woke this morning it probably loosened up dry, bloody boogers that had been sitting there for the past couple hours in his sleep. And once I nabbed thick, dry boogers from the front of the nose the blood started pooling and built up in his throat resulting in throw up. It had to have been building awhile bc he threw up blood and some brown stuff, most likely dried up blood. This explanation made sense bc his platelets number was good and his chest was clear as of 6 am. And all of the nebuelizer treatment have a tendency to mess with the flow of blood vessels in his nose, so we irritated things a bit. This all hit at 9 am. Then by 10 am when Dr. Kwon waked in to give me the final say on whether we could go home (the toxic number dropped to 0.03, finally under 1) G's nose began to bleed again. Dr. Kwon showed me the more comfy, quick fix way to stop the bleeding and wallah! It stopped and he gave us the green light to go home. I should be home close to lunch time.
• So, I am pleased to end the ramblings of the past few days of this hospital stay. We return to clinic on Monday for a simple blood count and then we are back here the following Monday to do this all over again. Even Dr. Kwon said he hopes "he does better next time" meaning that he hopes the toxicity level of the methotrexate does not take so long to leave his system as this week proved. I hope so, too! Cheers to no hangups before Monday morning or through the week.

Keeping Busy

Before I forget as a note to myself-this hospital stay G is drinking tons of milk on top of getting fluids like nutso. I am changing his diaper every 40 min. There was a trace of blood in his urine earlier today but it has not shown up since. He probably had a tough poop and that prompted some strain. He is eating bread with mayo and ketchup, pancakes w the same dips, rice, and fiber one bars. But not much overall. Sleep is all over the place with so many interruptions to monitor him.

But we did have a playful day!

Doctor in our future? He gets to take this one home! T is gonna love it. I can just see it now-he will be checking our vitals every 4 hours!

Made sock puppets

Painted

Practiced wearing our masks-and making silly faces underneath! (we are under droplet and contact watch again so we don the masks n gowns n gloves)

Fun Moments

Back in late September/ early October...

They love that hand-me-down castle from Grace and KC!

Grayson has been imitating T during homework time since the beginning of the school year. He is really into "colors" lately. My OT friends-take a look at that nice grasp! So happy to see it everytime considering these chemo drugs affect joint and muscle control as well.

Then one night during family movie nite Charito was working out in the living room. Grayson got on the floor to imitate. He is still perfecting his crunches!

We have also been trying our best to keep up with photos at home. Grayson wanted a hold of my camera and it is so fun watching him decide what he is gonna shoot. He walks around the room, looks around and says, "There it is!" before he takes the pic. I think this day he had boobs on the brain. He just kept following me!

The Good, The Bad and the Ugly

The Good

We arrived to clinic today thinking it would be an uneventful day and surprise, surprise-GREAT numbers. Now mind you-his numbers arent those of a "typical" child but I think by now you have figured out that these descriptors I use are "loose" and fit G. In fact we thought for sure given his INCREASED irritability this weekend he would need a transfusion today. But numbers were so good that we were given the ok to move ahead to next phase-Interim Maintenance. His ANC when we left the hospital last Wednesday was 200. We were able to get discharged once it moved beyond 100. Today it is 6, 410. WBC last week 200, today 10, 190. Hgb last week 7.7, today 8.7. I am done trying to guess around the numbers game. It is a waste of my time. No one thought his numbers would be like that today. Proof that his body is working at this. We are fooling that bone marrow!

No more delays like last week's "infection". We are a go!

By the way-this week marks WEEK 14 of treatment. It is going by pretty fast and yet so often I feel like our lives are moving in slow motion.

The Bad

No we return to inconveniences and nuisances. There was a miscommunication issue when this phase was described to us weeks ago. We were handed the time table depicting the "conventional" method of handling this phase of treatment. Drugs we were familiar with and a phase of 56 days. And yet it was not until this morning that the conversation related to the more preferred/recommended method was discussed with me via Dr. Kwon. It was quite the "frozen" kinda moment.

Weeks ago I think I mentioned we had good news and bad news to share. That news came from Dr. Goodell. I cant even remember if I shared it yet or not. If so, here goes again bc it's on my mind alot this evening. Goodell explained that typically with an older child we would administer radiation during Interim Maintenance. Now, we were under the impression that if the blasts had rested in his testes then we would be candidates for radiation. So, you can imagine how that word RADIATION scared us to even hear. We hadn't even heard that word muttered since Aug 2 when we asked about it as a treatment option. We were told no. But considering the next phase in treatment and as intense as it should be and his high risk characteristics with the ridiculous white blood count he had the day of diagnosis they had concerns. But after Goodell n Kwon discussed the pros and cons they determined that although radiation would better rid of the leukemia and its chances of returning it was NOT the option for G. He is too young. They did not want to take their chances. It was too risky for him. At this age (the big 2!) there is so much that is still developing inside him. Particularly his brain cells. They have found that radiation in a child this young can drop IQs up to 20 points. They can suffer from organ damage and other complications (not that we aren't at risk for that stuff from the chemo anyway).And often children this young suffer from developmental delays resulting in special education services and other therapies to assist their educational performance. During this conversation with Goodell Charito and I looked at each other and feared those possibilities. Yes, I'm a special education teacher but never does any parent want their child to be "imperfect".We were already fearful of the challenges chemo presented to him and radiation only increased those scars. Without saying a word to each other I knew we were thinking the same thoughts. We appreciated how they thought all this through. They considered his future, our future as parents. That was a relief.

But with that relieving thought came dread. Goodell mentioned that without the radiation there is a 15% chance the leukemia will return-and with a vengeance. It just does-worst than when it originally entered our lives. And on top of that-even if it (leukemic blasts) were never present in his spinal fluid that is typically where it is found when it does return. For the record, blasts have not been found in his spinal fluid to date (thus not impacting his central nervous system and brain function). This is what research has discovered over time. Now every cancer patient has the chance of it returning at some point. It is the daily fear. They give you a target year depending on the type of cancer and from what I have witnessed from friends and family you pray until that "safe year" hits and hope that you are still "safe" each year after that. So, we are left to pray that we are not that 15%. That it never returns after our current years of treatment. That the decision to avoid radiation pays off. In the end of that conversation, Charito and I were comfortable with that decision entirely. The alternative plan-an increase in Methatrexate dosages, the chemo drug administered into his spine. That was our plan.

So as much as I recall that conversation it was this morning's conversation that was not had by us previously. Dr. Kwon walked in with another form laying out the details of this new phase. It was titled Interim Maintenance but was not the one I had in my possession. He began to explain that considering we are not doing radiation he recommends another route for Interim Maintenance. The "high dose" method. This includes high doses of Methatrexate in both his port and spine. Along with other chemo drugs of course. The doses of Methatrexate are rather intense and therefore a drug called Leucovorin (new to us) is necessary (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000652). He would also be receiving Vincristine and Mercaptopurine ("more crap to pour in", you know that drug that is a pain in the butt to give bc he cant have dairy an hour before or after-It's baaaaack!). It is our best shot at protecting the central nervous system and spinal fluid,especially knowing how "fragile" G's numbers were when we entered this cancer world. He said most patients do well, as intense as it is, as long as they eat and remain hydrated throughout. It sounded like a no-brainer but I wanted to discuss it with Charito. Then the freeze came...the first dose of this treatment meant a 3-4 day hospital stay. And every two weeks thereafter. Whenever we were ready they would get a bed for us. Bed for us? That's code for being admitted, a hospital stay. I questioned what he meant and he further explained that the intense doses of Methatrexate were administered thru his port over a 24 hour period. Then G was to be flushed with fluids for days after to ensure his kidneys and bladder were excreting the toxins properly and we were given the Leucovorin as needed to counteract the effects of the Methatrexate. That meant I was to decide if we started today or next Monday. I had no idea that there was a possibility I would not be home for 4 days when I left this morning!

I called Charito right away. Deep down we knew it was good news to be able to move onto the next phase after last week's delay. We knew this was a lucky moment. I had overheard some stories of other kids in clinic near G's age and older that were due to start this phase near the same time as us and they were stricken with tons of "hiccups" and delays over the past few weeks, those much more troublesome than ours. It was a no brainer but as Charito and I think alike we drifted to the calendar and thought of the holidays. If we started today that would mean the following bi-weekly hospital stays would fall days before Thanksgiving and Christmas (of course, as always those tentative dates are dependent on his numbers and the progress of the phase -no "hiccups". Leaving us to wonder that even if we returned home the day before Thanx and Xmas-what condition would G be in? I asked Nurse Jennie for her honest opinion. Should we wait til next Monday? 1. For preparation sake 2. For the timing of the holidays. Her quiet pause immediately following my question made it very clear. Start today. She said not to worry about the holidays. Doctors are lenient when it comes to holidays. Take advantage of the good numbers today. It is a good start to a new phase-it's like having advantage points!

The Ugly

That was our weekend. The first SUPER crabby weekend for us all in 14 weeks. It really was unbearable. For the first time I could not tolerate G's whining and impatience. I really had to walk away from it before I yelled at him in mean way. It was the first time I couldn't reason with the "it's not his fault he feels this way" excuse. I blamed it all on terrible twos, got upset and shut down. The impatience he displayed was out of control. I actually started brainstorming ideas from my Spec Ed mental file to help him get thru this. Some type of visual cue is needed to remind him he has to wait. Wait for milk while I feed Caden rather than screaming the whole time. Wait for this or that rather than throwing himself on the hardwood floor and injuring himself. I hate what these drugs do to him. Our home dynamic.

Everyone of us felt like we hit a wall. Everyone was irritable, short, and tired. It was like we couldn't recover from the blahs of October and we were finally seeing it in our kids. I had a date night planned w Triston that I had to cancel ( luckily he didnt know about it)
bc I just couldn't function. I didn't feel well and knew I wouldn't enjoy it like I had been wanting to all these weeks. I was going to force it on two crabby people. Not fair to him or I. So it became family movie nites all weekend. Early bedtimes, too. It was the first time in a while Charito felt the need to go for a ride to clear his head of all the whining (all 3 kids-even Caden ! His schedule was all out of sync while I was away last week. I spent all nite Wed and day Thursday getting him back on track. By Thursday nite he was sleeping thru the nite again! Mommy fixed it. Then stupid time change messed him up again. And now I am away again and his schedule was off once again last nite. I'll have to fix that when I return later this week). I felt the need to escape into our bedroom and fold mountains of clothes just to get away from the noise. It was one of those weekends.

And here Charito and I were looking forward to a low key weekend to wipe the weekend away. Instead another stay at hospital. It was the unexpected, unknown, surprise aspect of it all that bogged us down yesterday. No time to prep. Arrange babysitters. Mamac and Titamel are staying overnite, taking shifts, etc with the help of Papac and his drop off and pickup service. But the last minute gave no time for anything. It is going to be a long couple days for all of us. Mamac and Titamel are working everyday this week (nights). So, they sit at our house then have to go to work. Drop this one off at this time, get that person there at that time. Charito taking one or the other home at 10/11 at night she can rest up. Not to mention my lack of prep for all the things I like to micro-manage.

But here's the wierd thing-on top of my crabby mood all weekend I couldn't shake this gut feeling. It wasn't a good feeling-motherly instict kinda thing. Like something was settling well. I had some downtime Sunday and prepped all of T's snacks for school thru Friday. I made his lunch for Tuesday and Wednesday (days I didnt purchase a hot lunch). He had no school Monday for Veteran's day. I felt this urge, as annoying as it was to walk up 2 flights of stairs mulitple times, to put away all the clean clothes, sheets and towels that had built up over the past 3 weeks. It was like I was nesting! I still had the gut feeling as I walked into clinic yesterday. This stay and the protocol of this phase explains it all.

The UGLY truth is how hard this has been in recent weeks. Pneumonia set a tone we are struggling with. It brought some mean thoughts to the surface. A tone that reminds us that cancer isnt enuf. It doesn't stop there. Every one of us is still vulnerable to other illnesses, accidents ( Like the one before we left for clinic, a great beginning to a Monday morning -G tripped over a train bridge while throwing a fit and down he went-face flat onto the hardwood floor busted lip and all. I was scared it would not stop bleeding but it clotted rather quickly and what better place to be headed to than the hospital anyway. It was just nerve wracking bc it took me a while to determine where the bleeding was coming from and how bad it was. His bottom teeth went right thru his upper lip. No stitches tho. But that is how I left T that morning. I yelled at him after leaving his trains in a walkway area which we constantly remind him not to do. It is still a living room after all. I yelled and threw the bridge and then later found out I wasnt coming home to him that night. That thought amongst others made me cry right then and there in clinic. I felt like the worst mom ever. That fear of abandonment I may have left him with upset me so much. I ached down to my bones ), etc. Life still goes on. We weren't handed the cancer ticket and told "don't worry about all the other negative stuff that life hands you-you got enuf on your plate-you get a free pass on all the other crap". We still deal w the frustrations of flat tires, broken light fixtures, a 5 yr old's fever, an infant's eye infection, the death of a dear friend's father, and other family dramas. We don't get to push the pause button on all of that. And cancer sure doesn't care about what else you have going on at the time. It's diagnosis and drama hit at any and all times. It is never convenient for anyone. No one deserves it. Whether it's crushing the most recent awe over the goo goo gah gahs of your new addition to the family, the emotional spirit of your 5 yr old, the twinkle in your husband's eye or ignoring your holidays-cancer is not kind. Yes, it pushes you to be more positive than ever about the future and what NEEDS to happen daily in order to get there, but in the mean time you find yourself crawling instead of sprinting thru life. I ulitmately can't describe it's depth and hold on us. I guess you just have to live it and I don't wish this on any of you.

The Biggest Bro

This pic was taken back in Feb/March. The bond then was unbelievable to watch unfold and NOW it is truly priceless.

I just had to share what the biggest bro, T , mentions these days when he is not feeling well-

"Mom, I think my white blood cells are not doing their job! I am not feeling well today". He really understand the science of Leukemia-the book knowledge of it all. I just wish I could protect him from the emotional swings it takes on him. Wave my magic wand and make it all go away. Anyone out there finds one can you pass it our way please!

Home w some bumps

How wierd-my pics have never loaded up like that before! See stories below.

Thanks to one of our many awesome nurses, Nurse Christina, we were discharged rather quickly yesterday. That makes our total length of stay -afternoon on Sunday(October 31) to Wednesday afternoon (Nov 3). She asked me at noon what time Triston gets out of school and when I told her 3, she promised me she would have me out of there in time to meet him at the door! She is one my favs bc she is so informative and tells it like it is...and sneaks me goodies like xtra diapers n gloves n toothettes n thermometers to take home. She even dressed him while I got our bags packed up!

We were ready to walk out by 1:30pm. I am so glad she offered to walk down with us bc it was a far walk. I had left my car at the ER lot all that time. When we arrived to the van my key fob was not working. I then noticed the front doors were unlocked from my view of the windows. I thought someone broke in! Well, no...I got closer and noticed an interior light on and realized I had a dead battery. Turned the key and there it was...no turn over. I was SOOO RELIEVED she was with me. I would have dropped to my knees and cried in pure exhaustion had she not been there w suggestions. I couldnt even think clearly. She mentioned that public safety would jump the car enuf to get me home. We walked back to the building. She held onto G while I communicated and worked w the officer. It started right away! Sigh of relief. I hugged Christina and loaded G in the car. I headed home-praying there would be no more hangups1

I arrived minutes before T was to return from school. His buddy's dad was taking care of dropoff for us this week so I met T out front. The smile and screech for MOMMY was the best! He was excited to me as I was to see him. For the next couple of hours every 30 min or so he would hug me and kiss me and tell me he loved me or missed me. I said it right back to him, along with how proud of him I was that he was brave and well-behaved and took care of his baby bro while I was gone. He loved hearing that. I loved saying it.

T also returned home to another surprise-a package from Grandpa. The Arkansas packages are usually labeled with Grandma touches but this one was all Grandpa's doing. Grandpa saw it and thought of T right away. T was so touched it was all his. Something with the right timing that he needed this lil surprise. A wooden baby dinosaur peeking out of an egg. His response-"Grandpa sends the coolest packages! But,Grandma sends clothes and candy". I could tell his wheels were still spinning. Then he adds, "My room is not special enough. Not everyone will see it. I will put it here!", as he placed it on our dining room buffet. It looks great there!

Shortly after T arrived home Mamac had to leave to get to work. I didnt get a chance to shower! It had been 3 days! Yuk. Then Caden woke up. I couldn't wait to see his expression when he saw my face. I got the biggest smile. I unswaddled him and found the above pics. He was wearing an 18 mos old onesie! I couldnt understand upon first glance what he was sucking on. Then I saw the long sleeves and knew there was NO way he grew that much on me in a few days. He IS NOT ALLOWED to. He didnt seem to mind it though-look at those smiles and then in the second pic he is laughing bc I was teasing him about his clothes.

Then T n G fell into usual afterschool routine (on our stay at home days-which are def the case until further notice Monday bc w Gs ridiculously low ANC he cannot be exposed to the "outside world"). G stumbled across T's halloween treat bag and dragged it everywhere and for the next few hours all I heard was G asking me to "open, please" (he ate so much candy, I didnt even care! He deserved it), G bossing T and Bryley around, and T yelling "Mom, he's doing it again" as he antagonized every inch of T (G missed him so much he just wouldnt leave him alone). At one point I heard T scream to G "will you just use your patience and let me do my homework! I have things to do you know!" I just giggled to myself. I missed it all.

I know many of you think I'm lying when I say that but I really mean it. I very rarely yell. It's not what I want in our house. The only times I have been raising that get-out-of-the-way-mommy's-mad-voice is at bed time. It is a very frustrating time. All of June and July these two slept in the same room. Lights out and go to sleep on your own. I didnt care if they read books for a bit but they were not allowed to come out. Ironically T fell asleep first and it was G that would push it to the limits and play at the train table. But he would not yell to come out or attempt to escape. He felt fine knowing T was there and when that tired bug finally hit he would crawl into his bed and fall asleep w whatever toy in hand. By the end of the first week T was out within minutes and G was lasting about half an hour before playtime ended on his own.

Since diagnosis T lost his room buddy bc practically all of Aug and most of Sept G slept in our bed. We just did not feel comfy with him out our sight. Most of October he slept in his own bed other than the nights his respiratory infection left us in monitor mode. But bedtime is tricky. Now they feed off each other and will not settle down if we attempt the same room bit. Its a funny kinda feed but when we are so exhausted its gets irritating after an hour. They tickle and laugh and tease n read n joke and so forth. It is great brotherly business but they truly need their sleep. Mommy n daddy need their sleep! So we separate them. We cant just close the door on G anymore and walk away. Too many fears of injuries while he is playing around and such, and if he does fall and injure himself we need to be able to say what happened. By the end of each week we do not know what his blood numbers are and that is nerve-wracking. A bruise freaks us out. A bump even more. And blood-well, that's another issue with his clotting factors. Yes, it's an edgey life we live now and not the Aerosmith kind. So these days T gets sent to his room to go to sleep on his own . But sometimes he wants to cuddle with us as much as G gets to. He has nights he cries that he feels lonely. Charito takes one and I take the other. We play it be ear. There are nights T is so tired that he is off to bed and out so quickly. Then there are nights he's so wired that he needs quiet time with an adult to fall asleep. It is so inconsistent. Since Grayson was 3 mos old he and T went to bed at 6:30pm and slept til 6/7am. It went on for years and I miss it. Now we are trying our best to get to some kind of schedule but it is constantly interrupted. Depending on the meds G is on affect his bedtime, our bedtime. And it is not fair to send T off to bed when G gets to stay up playing bc he needs one more hour of awake time before we can administer this or that med. It's about keeping an even playing field for both of them and not hurting T along the way. He is way to aware, intelligent and compassionate for that. So needless to say, bedtime is rough. On a tough night each adult takes a kid. On an easy night T is so tired he puts himself to sleep and G just happened to not have a nap earlier or his platelets and hemoglobin are so low he falls asleep really quickly. But that is the other thing. He is so used to sleeping in our bed now bc of all those nights we keep an eye on him that he prefers it. So if he is having a difficult time falling asleep we let him pass out in our bed and then move him to his bed(if it is a bit "safer" of an evening to do so). I sure won't leave him in our bed to fall out! Other nights he starts off in his bed and we lie next to him and cuddle or rub his head or back or whatver he demands until he falls asleep. And then there are those nights when I want both boys in my bed with me. Family night.

I don't even know where this post is going anymore! Lost track. This is what happens when I cant get it done in one sitting (started it on Wednesday or Thursday and now it is Friday)and I'm already feeling cloudy to begin with.

But our return home left me with mommy stuff to catch up on. Baths! Oh my-Caden hadn't had one in maybe two weeks! I was afraid to look at his scalp. All that hair has left him an oily kid. Each one of my guys has had a bit of cradle cap and without a bath Caden's was gross. Not the worst case out there but for a clean freak it was enough. That baby boy sat under that running faucet in our bathroom sink while I combed like crazy. I couldn't believe how long he tolerated it. I got him all fixed up. T needed nails trimmed. G needed nails trimmed. My mother-in-law got alot of laundry done. I still had tidbits to do. It was as if as soon I walked in the doors I had to put that Mommy Hat back on and get to it. I felt so disorganized.

But at least I got some work done during the downtime of Grayson's naps during the hospital stay. I was able to return to the interrupted business of planning a site for Triston and Grayson's combo bday party in December. I found a place newly remodeled. And even better-the supervisor granted us the space to ourselves at a cheaper rate. I had mentioned I was in the hospital with my 2 yr old and that led to G's story and then before I knew it she was more than accomodating. It was such a blessed act of kindness from a total stranger. I cried over the phone with her. I couldn't believe it. She insisted that G's five yr old brother should have the bday experience he deserves and the safer accomodations for his 2 yr old brother to be able to attend. It was amazing! It was a feel good kinda moment to make for a full day of feel good kinda vibes. On Thursday when I had to run to the site and pay the deposit I brought that supervisor flowers. It was the least I can do! She just called me to thank me for them. I explained to her that if she was one person I could show gratitude toward I wanted to. Even if I hadn't met her yet. Maybe one day I will. But up until this point our friends and family will not take anything from us return and if I could give back to one person I was going to. It meant so much to us. Then following that phone call via hospital room I was able to confirm Caden's baptism details and approve a spectacular design for his invitations thanks to Uncle Joel. It was an accomplishing day for Mommy/secretary.

I don't remember what else I wanted to include in this post.

Well, regardless of what my house looked like, fridge, dirty kids under the microscopic eye of a mommy and they feeling that I lost control of the house (what little I have of it these days) all were well fed, loved, held and cared for thanks to many people. It was the best thing I could ask for under these circumstances. Now to make sure Charito and I stay healthy and wish for happy holidays...the older boys are in Santa mode already!!

The big reveal....

Caden Jay Cacal---------July 26, 2010------------7 # 8 oz------------Hairy and White!

It is about time!!

Isn't that onesie adorable! An awesome present from the Becky and her crew!

Normal delivery. Healthy and Happy. I think about 19 hours total labor. He was slow going. Then you would think the third would be easiest delivery-ha! Lots of pushes, I asked for epidural to be turned off bc I could not feel contractions and it made things so much more difficult. Great doctor once again as in the past. Caden made me work for him and that was fine in my book! YET, no one warned me of post-partum contractions. Apparently they appear with additional pregnancies down the line. Did not have them w T n G. They were horrible!! Worst than delivery and I am not exaggerating. Vomiting, tremors, contractions. I was superwoman during delivery and a sissy during this stage. I was so embarrassed to be in tears at that point but it was horrendous. After 3 hours of that it finally subsided and I was able to hold enjoy the baby ooohhhs and aaahhs.

This was the outfit Caden was SUPPOSED to come home in...we were in such a hurry to get home to the boys (we both missed them so much and were tired of the hospital-we were there late Sunday nite to Wednesday afternoon). I threw bags at Charito to take to car and didn't even realize til too late (and far away parking) that in one of them was this outfit! So C came home in the yucky green hospital onesie pieces. Talk about bad parenting already! We met everyone in the yard at home-Amy watched the boys at our place. It was a wonderful homecoming. Rushed and blurry but memorable. Grayson was so mesmerized by the baby! He kept touching my belly and looking confused. He still calls it my baby belly and lies on it (thanks to my battle field and scars). He is the only person in the world that I dont feel offended by with that comment! So, the next day Caden wore his "already home" outfit. We picked this outfit bc it was so fitting-it was so hard for us to picture G as a big bro! He's still a baby in our eyes at times.

I took this pic on Aug 3. I headed to Roselle that night to see T n C after 3 long days at the hospital w G. I remember wondering if Caden would even know who I was after missing my presence for several days. The way he nuzzled toward me once I picked him up left no doubt in my mind-I had another mama's boy! And damn proud of it!

Any pics of his first 5 days before the day of diagnosis are on Charito's camera. I have one of the 3 of them the night before diagnosis I will upload when I get home.

His second bath-Mom gave him his first while I was w G.

I tried to slick that crazy hair down-it needed some taming! He looks totally different!
His toy from Uncle Joel!

Look how much he was changing so quickly! Still looking like me tho! Finally got one to resemble me. Funny how each boy came out with more and more hair and paler skin down the line!

August:

Triston is so proud to this day to help out. He was the same way with Grayson. I tell him almost everyday his is an outstanding big bro.

September:

And the smiles begin.

I know there alot of pics of here of him smiling but seriously that is all this kid does. And anytime you try to get a serious pic you often can't. As soon as he sees anyone's face he just smiles. There is no stopping him. And lately everything is funny. I will have to post that video of him laughing weeks ago. Too funny. I have told Belmonte he truly is so happy. Upset when he needs to be and that's that. It's as if each one of my kids came out happier and happier along the way. We are blessed.

At two months old and already in the 4 month old prone position. Belmonte declares him an early crawler soon. He really is a nosey rosey! He just can't help himself! It's his nature. I see the wheels spinning already. I will place him at the changing table and I watch his eyes track the order in which I grab materials from their locations even before I have finished the current step. He has it figured out, memorized and keeps his tabs on me. Another dictator in our midst?! He is now 14 weeks old and earlier than his 2 mos aptmt he was able to escape any swaddle. And yet way back then we found we still have to swaddle bc I was finding him on his stomach. Yup, he was rolling over and freaking me out!

Amy and I joke all the time that it's like he is one age living in another's body. It is so wierd to hold him and feel all the physical activity is trying to accomplish and yet the rest of him isnt ready for it. You seriously want to just plop him down on the floor to sit and grab the phone bc he sits in your lap w barely any support. Time to get out that Bumbo.

October:
He woke at 4 am one morning screaming. I went in there to witness all these bloody scratches on his nose. I determined he was fighting off the cancer ghosts in his sleep and left the battle with a few scars. Well done lil bro!

Loves this dolphin toy-that's my boy!
So thrilled he reached the rings all on his own!

Daddy sent this to me when I was out getting my hair done last weekend. The boys were so good for him and I was so happy that one of the few times daddy was alone w all 3 it went well. As Ive mentioned before-Charito will admit that his patience is all over the charts when it comes to the infant stage (and unfortunately during the infant stage all my boys really prefer mommy over anyone else. I dont mind at all!), Grayson's mood swings which are like watching a horror flick, and T -he just runs along his self-sufficient ways and acts up when he PMS's like mommy n daddy. Yay for daddy! I was so relieved he had a good day with them-the last few the kids were not so cooperative.

I am truly convinced that I was sent an angel when Caden was born. His personality and aura is more than we could have asked for in our situation. Whenever I am upset or ready to yell at some typical mommy thing I walk over to him and breathe. In August he was sleeping 10 pm-3 am. By September he was sleeping 7/8 pm -4 am. Each week leading up to the end of Sept. he stretched that to 5 am. And the grand ta da happened during October with the perfected timing of our pneumonia outbreak in which he slept til 6/7 am. Another great sleeper like G! I cant tell you what a difference it made to at least know I was going to rest up during the night even if I didn't get a nap while recovering.

It is my blog and my place to brag-Caden you are perfect! All my boys are - in their special and unique ways. I can tell you are going to be compassionate, smart, goofy and down to earth. You are a loud mouth we need to be and that is a good thing. A little guy like you needs to be heard in that chaos we call home. You do your thing and we will follow right along with you bc that is your personality-go with the flow and tackle the punches as they come. You may not remember any of this rollercoaster but we will make sure you know how much you were loved even when we felt buried deep in it all. You are a true wonder! A lucky star! And the best thing that could have entered our lives at any time bc you are that amazing! You just keep on taking in all that surrounds and putting it to use. Keep listening and babbling and watching. Keep looking at T n G with such admiration bc they really are good to you. I look forward to all you have waiting for you in the years to come. Our promise to you-we will make as wonderful as we possibly can bc that is what you deserve! I love you my little grain of rice-oodles and a google!