Update 6/22/05
This time last year, Samuel had his third shunt surgery, and the first VA shunt placed today. Ugh, what a horrible mess that all was. He has a VA shunt today, but it did not come to pass until after 4 more surgeries to attempt to drain the CSF. Not to mention 5 drainage surgeries to his abdomen since it just pooled up there. We also found out today, last year, that his leukemia was in remission i n the bone marrow. This was the first time they bothered to check it. Last year we were wondering how the treatment was ever going to cure his leukemia when it seemed things happened over and over to ruin any chances of the chemo to work. I just wrote a paradox. Sadly, last year we were relying on chemo for the cure. This year, I rely on God because I know chemo doesn't work without a price. And even then, it is not a 100% guarentee of cure, just a game of Russian Roulette with body parts, organs and life. In the pit of my soul, I feel we are done with cancer. I know we are done with chemo other than minimal doses.
Today, Samuel looks like he did back in February when they finally allowed him to get a blood transfusion. He is rosey red, glowing and the portrait of health. I know his marrow has bounced back and is probably over producting at this point by looking at his face. He finally kicked his little cold and has been feeling fine ever since. Hard to believe how far we have come and still, I am so thankful to be home, not in a hospital prison scared to find out what the new day has in store. Thankfully none of Samuel's shunts worked at our previous hospital and we moved to Childrens. WE wanted to get out of there anyway, but that pretty much forced our hand. We both feel that he would have died if we had stayed put.
Our weekend trip was a nice getaway though a two hour drive is almost more than four kids can handle. Our friends place was beautiful and once we got halfway there, we found ourselves looking at the lay of the land, and the homes, and dreaming of getting out of here. When we arrived at her house, we did not want to leave it. It was so peaceful, with room to roam for all. It really kicked our butts into gear and we started looking to see what was available and prices, etc. If our house was ready for sale, we could easily step into someplace like we are dreaming of in that area. And the funny thing is that we would not be much farther from the hospital going an hour south because we are so far off the main drag. Well, as Mark says, it just takes money. Yes, and time. Coming back home after staying the day there sucked. We just have to get out of here, and soon.
On Father's Day, I called and thanked my Dad for all the help, support and encouragement he has given me especially in the last year. My Dad called me every day for months. This is remarkable since we usually never talk and only in th elast couple years have attempted to have a relationship. Mark took the Kaysha and Daniel out shooting and hiking which they all enjoy.
Well, the day is begun and I need to get busy. We go back to the clinic Friday for yet another spinal tap and to see our Onc. Then the next week we visit with Surgery. It seems now, about every third air bag we get to stay on for 24 hours. I guess that is a little better.
Enjoy the day! Much love.
Update 6/17/05 #2
Samuel's ANC is 1400. Hmm, that sucks! No wonder he is having a hard time getting back to 100% well again.
Update 6/17/05
Samuel's counts....
WBC 4100
ANC???
HCT 37.5
PLT 569K
Samuel's counts are "good" according to the NP. His HCT is great and reflective of all the greens he has been getting. However, based on Samuel's "normal" they are still low as far as I am concerned. We did not get an ANC and they were supposed to call yesterday, but apparently forgot. No wonder he is still battling a cold. Ha and A.D. were better yesterday though. We were quarentined as soon as we arrived which made Samuel angry for the remainder of the visit since they had a new toy in the waiting room he did not get to play with. And then some idiot doc wanted to get his nose cultured so they had to shoot saline in it and then suction it out. He thought they were going to put an NG tube down and came unglued. His nose wasnot running until he has his port accessed. After that, he basically creid and his nose ran very nicely. By the time we saw the NP, we were all ready to leave. She spent about two times as much time with us as our Onc usually does, which was nice. I liked her quite a bit and she actually seems genuine, though does not know our history well enough. I guess our Onc gave her fair warning about me since she pretty much already knew what to expect fromme. We mutually agreed that starting Methotrexate and 6mp at half doses was a good compromise for LTM. No steroids, and no Vincristine, as it???? But apparently our Onc said he is still trying to talk me into it. Persistant isn't he? We were supposed to wait to get Samuel's ANC before starting chemo, and no one called.....oh, my heart does not break over that.
So we go in next week, Friday for his spinal tap, and to see our own Onc. At that point, we will look at labs again to be sure that chemo is not making them drop becuase when we get a surgery day, I don't want that holding us up. Then the following week, on the 30th, we meet with the surgeon. I realized on the way home from Seattle yesterday that we are going up there to meet the surgeon on the very same day that last year we transferred from our former hospital. Now that is a vivid memory. Very bittersweet in a lot of ways.
Tomorrow we are taking the day to go visit a friend and have a play day down south. A much needed break. The sewing contractor I have hired brought me over some beautiful wraps last night and it is just so incredibly liberating to be able to drop off raw fabric and have it come back ready to dye. My load is lighter for that. It has been really hard to sneak a day off around here but it makes it easier knowing that someone else is now helping us out in a major way. My mind and body need a day off.
Well, the day has begun here and Samuel already needs an air bag. I have lots to do if I am going to leave tomorrow, so off I go. Enjoy the weekend, with our love!
Update 6/15/05
Well the air bag that lasted 30 hours was a fluke. Yesterday we went through four and the new stash never arrived. This morning we got up and he needed three changed before noon. I called the supplier at 10am who assured me that they were coming UPS. We were down to the last one and it was on him. The next thing that would happen was that he would just be in the tub for the rest of the day if we ran out. I explained this to the person assigned to our account. Well, apparently, he did not give me the full story during my first phone call to him because at the very same time I was cutting open our box from UPS, he called and was going to tell me that it had been lost in the UPS system. I guess he checked the tracking and no one could find it. He told me he was about to get into his car and drive down here with some so was very VERY relieved that they had come, as were we. Our insurance is literally playing games with them and still refusing to allow payment. It is beyond ridiculous.
Our surgery time was never scheduled and as I stated in my previous post, I had to call and do it myself. Interesting that I could get the appt set the very day I called and Oncology couldn't get it done for over two weeks. I guess I should have just done it in the first place. So we go to a meet and greet with our surgeon on the 30th. Our favorite NP in surgery is scrounging up a box of bags for Samuel and we are picking them up tomorrow at the Onc clinic.
I tried to get out of the clinic visit this week. Samuel is getting sicker, not better. It is not a horrible cold, just nagging runny noses and a cough that comes and goes. A.D. still has it too. The rest of us are fine thus far. Between the garlic and my milk, I would think he would be bulletproof so his counts must not be that great yet.
We are going into the clinic tomorrow to check counts and see our NP in Onc since our Onc is not there. I did get him out of the spinal tap for this week at least. We have to go back next week for that now. ANd to see our Onc then. I don't even know why we are going in tomorrow honestly. Other than to get the bags, it is a complete waste of time. They "think" we are starting Long Term Maintenance then, but I have other plans. We are not doing anything until we talk to surgery. I don't want chemo holding us up at this point with Samuel's gut being hooked back up. These people don't have to deal with bag changes, insurances that refust to pay for them, and oh yes, my floor which is now beyond ruined. Our next house is going to have hard wood floors! I am glad we opted for the green carpet but still! A gracious friend of Mark's was kind enough to give us her carpet cleaner last year and it helps, but there is only so much you can do.
After the fourth bag, we got a keeper. Samuel's skin and stoma are looking ragged again and he screams bloody murder now when a new bag is pasted on becuase the skin is starting to break down. I was starting to think we were not going anywhere if we cannot keep a bag on. Changing bags at the clinic sucks.
We have spent a lot of time outside the past few days. I thought tonight as I was swinging and watching the four of them play, that they are finally learning how to play with each other. It was a delightful sight. Anna likes to play with Tucker, the pit bull. She is the only one he will allow to take something out of his mouth when they are outside. He lays and chews bones and she pulls them out of his mouth and then gives them back. He follows her around and looks like he is watching out for her. When we came home from the hospital last summer, she was deathly afraid of Tucker. She would literally jump out of her skin and shreik if he came near. Later, she would sit at the top of the stairs about five feet away from him and stare at him, but if he moved at all, the shreiking started again. These days, she calls his name all the time and looks for him. Kaysha, Daniel, and Samuel like to play hide and seek or swing together. Or dig in the dirt. Today, the were playing on a tarp in the yard and rolling and sliding on it down the hill. I took a deep breath and realized that I have four kids, wow! Not that I haven't known it for the past 16 months, mind you, but we never really had a chance to adjust to life as a normal family. It was nice.
I watched them and longed for the day to come when we can leave this house. Maybe have a few acres for them to play hide and seek on, 20 would be better, Or even more. We dream of the day when Samuel can have ducks on OUR land, a garden, my horse, another dog, the kids want kittens. Several people havfe encouraged us to apply for Extreme Home Makeover and while it is tempting, this is not where we want to stay and it would be foolish to have someone redo this house. We live on a tenth of an acre. There is no room for expansion here. When we moved to this house, there was no Samuel or A.D. It was a major stop up, but our intention was to fix it up and move within a few years. Now five years later, we are still here. Probably be here another year at least. I don't want to write that it could be two, becuase I hope it is not. Our house would qualify for the show, because it needs help, it is too small, etc, and I pretty much hate it. But the reason why I don't want to be here really struck me tonight as I watched the kids play. We have always known we would not stay here because we both long for land, and the things I listed above, but it wasn't until last year that I really felt the urge to not be here anymore. Up until Samuel's diagnosis, I thought we could all come home, close the windows, the doors and be safe. With no one outside our home, driving, working, there were no chances of accidents, etc. We were safe. You know, when all the kids are safely in bed and you are having some quiet time. It feels safe. Like nothing can touch you. I guess I foolishly thought we were safe here. But we were not. Samuel would have died here had we not taken him in on the day we did. And several times after we came home, the condition of his body when the CSF was not being absorbed, I literally watched him suffer one night ant thought he could die if it was not stopped. Then all through the winter. The amount of suffering he had to endure, here. You might change the house, but my mind will always remember. And even worse, for 100 days last year, we had to leave this hosue to see him. Or I just did not live here. I made the house payment on a house I did not see for months. When I did come home, when Samuel did not, it was the most awful horrible feeling ever. I wouldn't even go into his room. I did not look at his clothes. I walked around here aimlessly yearning to go back to the hospital to be with him, yet I did not want to go back there to "live". And even worse, I could come home and do normal things, like cook, clean, etc and almost pretent for a minute or two that life was normal. I felt a hope that was shattered every time I walked into the hospital. When Samuel went from Tacoma, to Seattle, I never came back here until he did. I did not see the house for a month. It took months after getting here to feel normal, to trust my own feelings about life and what it has to offer us. I will never forget what it was like to come home and leave my baby in a hospital. I will never forget what this house felt like without him. This house represents a life I want to leave behind. Our life was not meant to be lived here and we knew it from the day we moved in. But everyone has to start somewhere. The day we leave will strangely feel like we are leaving the cancer here and starting a new life. I long for that day and pray that God makes a way for us to get out of here. For those who want to see us recieve something special such as a makeover, please just pray that God get us out of here. Please know how touched we are that you would think of us.
Well, it is late, and we have to leave early. Of course, I am not even tired, but will be tomorrow. Yuck! But for those who cannot wait to know Samuel's labs, (Kristina) stay tuned!
Much love!
Update 6/13/05
Mark read my last entry and said it made him feel sick. Apparently his memory of the events is not as vivid as mine and he wants to keep it that way. But he figures I am purging it out of me, and I guess I am. It is just really hard to look back and remember without wondering how we ever survived it all.
Lately, our lives have been "Revenge of the Air Bag". It has been ridiculous. And we cannot seem to get supplies. Once again, I am down to two bags. We might have found a solution by trying some older style bags that did not work for us previously. We were having bags fall off after only a few hours and the other brand actually stayed on 30 hours! So I reordered those and cross my fingers that they do the trick. It will be so nice to not have to do that every day, or FOUR TIMES a day. They aren't that bad when they stay on, but when they don't it is miserable. I can't see well enough to put them on so Mark mainly does it. I have done it in cases where he was not there and I have to get within an inch of the stoma, which is like a volcano ready to erupt so you might imagine how fun that is. Thankfully these days, it does not fire like a squirt gun.
Somehow Samuel and A.D. have gotten some little cold or something. Don't know where they got it, but she had a runny nose and he did too, and was coughing. He doesn't act overly sick but you can hear it in his voice. His face looks like color is coming back and he is eating well. He looks like he has gained all his weight back and then some. He seems to have energy spurts but tires quickly. He doesn't know he is tired and so stays up and gets even more tired. Then more grouchy. This last poison session has really taken it's toll. I can see that any subsequent one would be worse and worse. Glad we are done with the main crap.
Last year at this time, we were just starting the roller coaster of bad news, surgery, one thing afteer the next and this year we are looking forward to some freedom, and normalcy. The clinic "thinks" we are coming in on Thursday for labs and a spinal tap. Supposedly starting Long Term Maintenance. We were supposed to go to the surgery clinic too, but no big surprise, they have never called to schedule it. So that will probably be put off another two weeks. Our clinic was supposed to be handling it and God knows I have had enough to do. But if you want something done right, you have to do it yourself so I guess I will have to do that too. Else we will be living Revenge of the Air Bag another month. So close and yet so far away. It has been really nice to be away from Seattle and not have to think of going in. I don't know if I want to keep our appt this week but only due to the time they made it for. I need to think about it. We haven't seen labs in almost two weeks now so I might be nice to do so. If I never went back it would be too soon.
Samuel has been walking around the house with the stethescpoe in his ears saying, "I'm Dr. Pooper and I want to listen to your heart." It is the most adorable thing. I came into his room the other night to check on him and found him listening to A.D.'s heart. Priceless. Can you imagine Dr. Pooper? IRL. Wouldn't that be interesting? My hope would be that he would raise the bar for the docs we see today. He could only be a doctor of Natural Medicine. Mark says that the only problem with the food I feed him is that he has so much energy he rarely tires out. Even when it is obvious he is totally pooped, he keeps going. He has spent a lot of time outside the past week. This was something I missed so much when we were inpatient last year. The healing sun. The kids all played hide and seek in the yard tonight. I had to help A.D. play too and everyone had a lot of fun. It is fun to see them all play together. Just wish our yard was bigger...someday.
I have been working really hard on the website this past weekend. Our wraps are available and will be stocked this week for those asking about them. Hopefully these will do well. We hope to take a day or two off toward the end of the week to visit a friend and her family down south as long as the weather holds and Samuel is better. It will be a nice retreat and a much needed break for everyone. We will have to go find some ducks for Samuel to play with again soon too.
Just wanted to send a special thanks to Brooke and Kristen who did some shopping for Kaysha and Daniel and sent huge packages to them. They really needed the clothes/shoes and loved them. These lades just went above and beyond when picking out things for them and got them things that right now, I could never afford. Please know how much your sacrifice means to us. I know you have families of your own. God bless you both! Kaysha and Daniel are always happy when someone remembers them. I know they have had to have felt neglected the past year. They love their new things.
Also, thanks to Kari M, for your faithfulness to us. Your gifts help more than you know. May the Lord bless you always.
Thanks to Dawn T for your offer to help me personally. It means more than you know!
Thanks to you friends who continue to pray for us, write to me and keep me going. As things that happened in the past year sink in a little more each day, I am constantly overwhelmed by your graciousness, love and continued concern for us. Much love to you all!
Update 6/6/05
Samuel improves and gets a little happier, more energetic each day. He is eating more and things are moving through and are almost normal again. But the saga of the air bag continues. In the last week, I swear he has needed three or more bag changes per day! Everytime I turn around that thing is leaking, half off and once he got the clamp stuck on a knitted blanket, tore it off and we had a nice puddle. I guess the closer we get to the end of this, the more hassle it must become. And to make matters worse, our insurance will only pay for 15 bags a month. We need about 45-60. The boxes of 15 are $96.60, or over $6 per bag! Talk about a rip off, or taking advantage of someone who is so unfortunate! So we have been going back and forth trying to get an authorization for more and meanwhile, I call the su;;ier every week to remind them that we are down to a few and we can't just hook up a ziplock. Today we have three left, which cuold be less than a day supply so I hope they understand that they need to send some asap. And of course, about the time the insurance approves the bags, we will most likely be getting it reattached. Is this not Murphy's Law? Thankfully this skin around the stoma has not broken down which is amazing. I think it has something to do with low counts because we had nothing but problems with it the last time his counts fell too. Maybe the skin surface or oils change because usually it is not this big a pain. We were averaging one to maybe two changes a day. Four is ridiculous. Can you imagine having a bag glued to the side of your body that you poop nonstop in all day? Then imagine it falling off every few hours ruining your clothes and whatever else it leaks on. Then try explaining that to a three year old. You know, he handles it very well.
I have been meaning to update for the last few nights but have been working like crazy because I know I will not be able to for a few weeks later in the month. I feel like my head is in a fog running overtime. I swear I pour myself a glass of water, take it somewhere, do something, and lose it. Then I pour another and do the same thing. By the end of the day I have 4-5 glassses all over the house! Our weather has been hit or miss but I hope we can get another day away to hit the trails we missed Memorial weekend.
I have spent some major time updating the website and came across this guestbook entry and it really kicked me in the gut.
Mary Lee Tuesday, 6/8/04, 1:39 PM
I have the priveledge of knowing Sam, his mom and dad and siblings. Sam is so full of courage and his mom and dad are unbelievably strong. Please continue your prayers for this family, they are having a very rough time and need all the support any of you can offer.
I never saw this because it was on the diapering page. When I created the site a few years back, I did not realize that each guestbook was seperate from the next. I thought you make one, it does the whole site. So as I was looking at this guestbook deciding if I needed it anymore, I about hit the floor when I saw this. Mary Lee was our favorite social worker at our former hospital. She was our friend. She visited us every day, and was down to earth, and honest about everything, about cancer, about what happened to Samuel, everything. We miss her a lot.
I have been thinking of this weekend last year a lot and looking at the date of her entry, it was posted the day after Samuel's first shunt was placed. It was another low. A pretty horrible weekend and a pretty horrible week before, and many many weeks after. We would have never made it through with sanity without Mary, Tammy and our favorite nurses, Kim, Karla and Abbey.
Samuel spent six days in the ICU after the loss of his colon. We came down to the regular floor on a Thursday afternoon. And then again, I promised him that I would never have to leave him again, I could stay with him at night, etc. And once again, I brought all my stuff over from the apartment. By that time, Tammy just let us keep the apartment though technically you were supposed to give it up when you left ICU. No one else needed it at that time. Our former Onc's plan was to start Consolidation chemo, another major phase, the one we just finished now, on Friday. Well, I just did not feel Samuel was ready. I could not put my finger on it, but he just was not normal. Once his stoma started producing poop, he was given the okay to eat "whatever he wanted." We joked and said we would feed him a steak. Well, he did not eat. If you showed him food, he gagged and immediately started gagging. No water either. Would not touch anything. Our Onc came in daily and asked, "did he eat today?"
I remember this day vividly because my Mom was there on a Thursday, not Mark. I cannot remember why. But when our Onc came in, I told him that I wanted to hold chemo until Monday because I did not feel Samuel was ready. We did not know it then, but in my book that was the first time I listened to my gut and it literally saved his life. Our Onc was not hard to convince. He was a pushover in my opinion and he agreed to hold off until Monday. I remember the great relief I felt. At that time, everyone was pushing chemo because he was surely going to relapse, remember he is a "ticking time bomb!"
Samuel never talked after his bowel surgery. He would cry when agitated and said my name if he was crying but other than that, nothing. He wasn't interested in anything but glueing himself to the TV. I used to just leave it on all night so if he woke up, he would see something familliar. I asked them to do this in the ICU but they never did. Well, some did, but most did not. Friday it was decided to wean Samuel off the morphine. This would be the first of many unsuccessful attempts to do this. They prescribed methadone. So we started giving it every six hours. Suddenly, he stopped moving and crying. He started vomiting all the time. Except that he had nothing to puke. So he would dry heave or puke up little amounts of liquid. Just enough to ruin everything in his bed. He could not sit by then so he would just puke all over himself. And because he could no longer make noise, I did not notice it at first other than he was wet. Finally I realized he was puking. This was Friday, the day he was supposed to start chemo. Chemo being a spinal tap. At that point, a spinal tap would have killed him. He would have died and they would have probably never known why. That is the day we saved his life.
Satruday, this comatose condition continued and I was getting pretty frantic about it. The night IV team who by then knew Samuel well commented that they liked him better when he cried and I could tell everyone was concerned. But no one had an explanation and the on call Onc was not ours and basically unhelpful. So Satruday, Samuel lay in his bed, not moving, no longer crying, he did nothing. That night, I woke up in the middle of the night to his music playing. He has one of those ocean acquariums that plays music with the bubbles. It is forever on Twinkle Twinkle and no other song will do. Well, it was at the end of his bed and it was about 2am. NIght shift usually comes in around 12 and 4 so I did not know what was up. I got up and walked over to find Samuel awake and very hot. I called the RN in and asked if they had come in previously. No one had. So I assumed that somehow Samuel had woke up and kicked the music box on. Had he not done that, I would have never woke up because he did not cry anymore. He just looked at me. I felt really scared and sad because I would have never even known he was up or hurting, or with fever other than that. The distance from his feet to the music box was a lot farther than he should have been able to reach and no nurse had been in there. Somehow....I don't know. I never really went back to sleep after that because I thought I would miss something more. The next day I had RN Kim. We talked all day about Samuel, something being wrong. No one knowing what. She asked if a few docs would come in and look at him but because our Onc had not formally asked them, they could not. That Sunday was my Mom's usual day to come in. Mark's usual day to stay home with the kids. She could tell something was wrong too. But she saw something I could not. She saw fear in his eyes. He was scared to death. If I was changing his diaper and ANYONE came in the room, he would pee everywhere. LIke a scared animal peeing. And when he did this, my Mom said his eyes grew wide and she could see he was terriibly rrightened. It was so obvious something was wrong and no one but us, and RN Kim would acknowledge it. That Sunday, the hospital was opening a new surgery wing and doing an Open House of sorts. Samuel went to sleep and we decided to go over to check it out. I put Anna in the pouch and we went. That area of the hospital was directly across from my room view and I watched them turn off their lights one by one each night. So I thought it might be nice to see what I was looking at. But the minute I got over there, and it wasn't that far, I felt sick. LIke I needed to get back. And I never left the room normally. Everyone brought me food, I never left unless Mark was there and Samuel was asleep. I knew RN Kim was the best but I did not want him waking up without me and being scared. So just as we were about to step on the elevator for a tour, I ducked out. Anna was getting agitated anyway. I hurried back with my heart racing fearing something terrible and when I came in, Kim was doing vitals but NOT happy. She told me she had now taken three blood pressures and they were like 60/15, 45/10, in that area. Samuel was awake and the next one she got was in a more normal range. I asked her what she was planning to do if it did not go up and she said they would have to call somebody. Great, another thing to worry about. I managed to get Anna to sleep and asked Kim to help me get Samuel up so I could hold him. I wondered if that would help. Well, he just puked all over me because by then, his hydrocephalus was so acute that vertigo had set in. Only we did not know it yet. I held him until my Mom came back from the tour and about that time Kim was off for the day. Then I ended up with the haggiest RN ever. We actually had her the first night of this inpatient stay. She was the one who thought I was taking Anna home at 2am.
I had gotten out my book about leukemia and drugs to look up Methadone. I did not have access to a computer at that time. We did not have a laptop until Sara sent me one in July of last year. Bless her! But in the book, the side effects were extreme sedation, vomiting, depression, and dizziness just to name a few. My Mom and I thought we have figured out the problem and I called this hag nurse in to tell her we weren't giving it anymore and this is why. Well, she had a fit, called the charge nurse, and the pharmacy. They all told me I could not just STOP this madication without him going through withdrawls. Note, he was still getting morphine too. Now I was told not only did he have a morphine addiction, but a methadone one too? Well, I flat out refused. The charge nurse spent over 45 minutes with me talking it over and I continued to disagree. Again, the first of many refusals to follow orders. We had to start somewhere. They asked if I wanted the pharmacy to call me direct, but oh yeah, it is a weekend and no pediatric pharmacists were there. Well they freaked out and I did not give it. It was another long night but in the morning RN Karla came in birght and cheerful at 7am. "You get me today," she says. I hugged her. I wanted to cry. But I knew everything was okay. By then, everyone had gotten the memo that I was not only refusing methadone, but also chemo set for Monday. Again, the spinal tap would have killed him. Karla said she would tell our Onc the minute she saw him. She noticed that Samuel acted funny too but only after I pointed it out. On Monday, his eyes were pinned to the left and did not move. Nor did his head which was also pinned to the left. I tried to turn it but it would not go. I tried pleading with him to talk, give us a clue, anything, but nothing. Somehow I missed our Onc's morning visit. I must have been in the bathroom. He always tried to avoid me anyway and Anna had this great habit of puking on their shoes or burping in their faces so I always made sure to hold her really close to them when they came through. I had had several talks with Kristina and Monika throughout the weekend. Monika was adamantly against the methadone and Kristina told me to ask them to do a CT or MRI of his head TODAY. And if they refuse, make them give me a good reason why not. About 10am, I still haven't seen the Onc and I remember sitting on the floor with Anna, trying to entertain her. A very familliar ICU doc came in. I thought he had been called to look at Samuel but instead, he was there to do the sedation for a spinal tap. When he asked if we were doing it today, I said absolutely not. He asked why and I pointed to Samuel. "Look at him, YOU need to figure out what is wrong with him." About that time, our Onc came in. He talked with me, stating he did not see me earlier when he came in but found it strange that Samuel did not do his usual cry. Samuel hated EVERYONE there at that time. For him to NOT cry when they came in was beyond strange. Our former Onc then did something I will never soon forget. He and the ICU Doc noticed his head and eyss pinned and wondered aloud if he had had a STROKE!!!!!! Okay, I was so done with them at that point. Not only did we know something was up all weekend but now they are saying he has had a stroke! And we have been sitting on this for days!~ Then he picks Samuel's head up with both hands and rolls it around like it is a ball and talks to him trying to elicit a response! I wanted to kill him at that point. Or at least grab his head and do some rolling of my own. A stat CT was ordered and about that time Mark came in WITH Kaysha and Daniel. I wanted him to bring them thinking we might get a response from Samuel. Well, it was incredibly awful timing. . I told him the news, what they thought and just cried. I asked Karla what she thought and she did not believe it was a stroke. She told me she has seen many strokes and this did not look like one. They came to take Samuel to his first CT, the first of hundreds I am sure. He has had a lot. Karla came in and took Kaysha and Daniel out to pick out blankets for Samuel's bed that she was going to change while he was gone. She asked what they thought Samuel should have and I answered something nice and soft. I tried to keep it together for the kids. When they left, I called Kristina and told her. We BOTH cried. She prayed with me, like she has done so many times on the phone and then she got off the phone quickly because she wanted to be a pillar of strength to me and felt she wasn't at that time. The kids came back at that time and fixed Samuel's bed. He ended up with two new knitted blankets that were really soft. I wanted him to come back to something nice and comforting and he did. Mark came back with him but knew nothing. Child Life's Anna came in and took Kaysha and Daniel to the playroom so we could be alone. A bit later our Onc came back in to tell us it wasn't a stroke but rather hydrocephalus. He drew us a picture of what his ventricles now looked like, and what normal ones look like. Then he explained a shunt and how it worked. Basically, he was going to have emergency brain surgery and after that going back to the ICU. And topping that note off, our Onc was thinking that his leukemia had relapsed in the CNS. As if the stroke thing was not bad enough, now we were talking about something that meant sure death at that point. I called Kristina back and she was relieved that he had NOT had a stroke and told me, "Your boy is still in there." Comforting, yes, but not much. We made arrangements to drop the kids off at Mark's sister's house. She lived a few miles from that hospital. Then we waited. Samuel was moved to the ICU prior to surgery so again, we packed up everything and moved it upstairs or to the apartment. By then I had accumulated a lot of stuff. Abbey was our RN and she just could not believe it. When we got there, guess what? The Methadone was taken off the orders. And guess what else, he never had a reaction. So all the bad things they warned me about never happened. Methadone was removed because they did not want him to drift into a COMA!!!! Well, the charge RN from the night before apologized to me at a later date. I told him he ought to listen to a Mother's instinct next time. It might just save the child's life. Samuel did not go into surgery until 3pm that day. It was a long long day. We met with the surgeons who explained that they were going to literally drill a hold in Samuel's skull and put in a drain system into his abdomen. It was just sickening. I asked Tammy if there was a quiet place we could wait during his surgery since the surgery waiting room was always a madhouse. She got us a private room and Mark and I hashed everything out. All the what if's. What are we going to do's. I cried and couldn't stop. It was so hard to wait. If literally felt as if we were planning Samuel's funeral that day. It hurt SO bad. Words do not even explain how much I wanted ti die inside that day. Tammy came in and checked in on us. Mary just could not believe it. And the thing was, these ladies would leave for the weekend and Samuel would seem fine. Then on Monday, they would come back and all these awful things had happened over the weekend. This was pretty bad. It seemed like forever but the surgeon came in and said that it was done, it went well and that the spinal fluid was clear. Clear, meaning transparent. No lab results for leukemia would be back until the next day. Everyone assured me that these operations usually showed results by the next day because the pressure to the brain was relieved. We came back to the room where Samuel was going to be brought back and waited. They brought him in and becasue the room was so tiny, they asked ME to leave while they got him situatied. I was beyond mad. Then I get cornered as I try to leave the unit by our Onc who sees Anna and tells me that I should probably not have her in there as there was meningitis, whooping cough, flu and other crap in there. I was LIVID!!!!!!!! I cried again, for the five millionth time that day. When they finally decided we could go back in to see OUR boy, I told Abbey about that conversation and asked her opinion. She agreed that it would be bad for Anna to get sick. I asked why then was Samuel up there since if Anna got sick, she would recover. If he did, he might not. But of course, no one could answer that. Just a side note, to this day, Anna has never been vaccinated and Anna has never gotten anything at all from a hospital where we have been. Ode to the power of breastmilk. Anyway, we came in to care for Samuel who was still intubated. They did not tie him up there like they did in Seattle where I had a complete fit back in August. He was laying on his side and we held his hands and kissed him. I tried not to cry. The minute he started gagging on the tube they took it out and he cried. Oh, it was a joyful noise! We stayed until 8pm. Anna decided to be just horrible! She always did whenever something bad was going on. When Samuel needed me most, she was also very needy. We needed to leave to pick up the kids from Mark's sister's. She was not used to having loud older kids for that long a time. It was SO incredibly hard to leave but I knew I could not stay. They had made me feel so unwelcome with Anna and I just could not bear the apartment. We had Lynne as a RN for the night, another well trusted Rn. I called when we got home and was told he was watching BLues Clues. he was still not talking but would cry when she changed his diaper. Same report the next day. I talked to Abbey on the phone prior to geting in and told ehr that if ANYONE even mentioned Anna being there, I was going to let them have it. No one did. No one mentioned it again.
Tuesday morning, Samuel was a bit better. But not moving much and not talking. They wanted us to see if we could gethim to move his head and neck. I did, but he was in a lot of pain. Pain, fever, morphine, the usual. They did a CT and we were okayed to leave the ICU and go back downstairs. I was glad because by then I hated the ICU with a passion. The later afternoon report confirmed that there was NO leukemia in his CSF. Thank GOD! At that point, it seemed like the roller coaster ride was over. Just a matter of recovering from the surgery and eating, getting off morphine and going home. But of course, it could not be that simple. Future CT scans showed Samuel's head looking not better but worse. Days after the surgery, he still was not talking. More talk about more surgery and I could just see the vicious cycle it could turn into. Everyone was concerned the shunt did not work properly. We were told this might happen. It obviously did. Shunt studies showed it wasn't draining, but going backwards instead. At that point, and for the next month and a half, he did not talk, play, move nothing. They stopped asking if he was eating today and started asking if he was talking yet. It looked BAD and no one had any answers.
Anyway, seeing Mary's entry just really struck me because it was posted a year ago at about this time. Boy am I happy to be home tonight. My boy is in bed. he talks, he walks, he can eat and he has defied all logic. He is a miracle.
A word to the wise, if your child is ever hospitalized, DO NOT leave them. Ever. Those people do not know your child and well meaning doctors could make a decision that kills your child. When you walk out of your child's room, you are literally leaving their life hanging in the balance. I say that because we saw many MANY kids left alone. And even more babies left to fend for themselves. I wanted to comfort so many of them and I could not leave me own.
Always trust your gut. No one knows your child better than you. Samuel is alive today because I did just that. It is not easy, but let me just say that it does get easier with time. Well, it is second nature now. I have always had to keep the defiant side of my nature in check anyway.
Reliving that just makes me so thankful for ALL the prayers that were offered up for us, for Samuel. Thank you so much to those who continue to follow Samuel today. Thank you to those who would have given us the shirt off their backs. Thanks to my dear friends who helped bear the burden of pain, sorrow and frustration. Much love to you tonight!
Update 6/2/05
Clinic today. Samuel's labs remain virtually unchanged from a week ago surprisingly enough.
WBC 2700
ANC 1188
HCT 27.4
PLT 350K
His weight is up just a smidge. He actually improved yesterday. This was the first significant improvement that we have seen in the last three weeks. He actually had real poop that came out in a more timely manner. Today, he was better yet. He ran around the clinic like a madman with A.D. trailing behind battling to keep up. We feel like his counts are on the upward swing now and are surprised they are not higher. Probably reflects the diet of his past week, which has been mostly clears. Hopefully now we can get back on track. It is hard to comprehend that we are on the uphill swing of things not seeing the counts higher. But the good news is that everyone is happy enough with Samuel's counts that we do not have to go back for TWO WEEKS! And then they are going to try to co-ordinate a visit with the surgery clinic at the same time to discuss a date to hook up Samuel's gut. Still can't wrap my mind around that. I guess it might sink in when we actually set a date. Maybe not even then. Maybe when I pack the bag to stay for it. I talked to Samuel about his air bag going bye bye for good but he diesn't understand it.
Well, we had another interesting visit with the Onc today. Our visit always consists of him examining Samuel, just the basics, like a well check at a Ped's office really. The blood draw and labs are done prior to seeing the Onc. Then he will go over the "plan" or the protocol, as if I don't already know what is up. But mabye they have a lot of uninformed patients so they just do it JIC. So, we went over Samuel;s gut issue and how it only just got better yesterday but still wasn't back to normal yet and he again mentions Vincristine. Mentions that with his gut issue, obviously they won't be giving it now, or next week, etc. And then in two weeks he is due to start Long Term Maintenance and would be due for Vincristine and steroids for five days. But it would be stupid to give both at the same time so he wants to just try steroids first and then add Vin later. And he goes through this big spiel and it usually pisses me off but today I just sat and entertained Samuel and never said a word. He got done and I did not respond. So he asked, "What do you think about that?" I looked up from playing with Samuel and said, "You already know what I think. I don't even know why you continue to bring it up. We are not doing Vincristine, we will never do it again. I am sorry he got the doses he did. Either he is cured or he is not and if he relapses, it won't be because he did not get Vincristine. It will be because our first month of "treatment" was screwed and because chemo is not 100% effective in all cases. Vincristine is not going to be a part of Samuel's cure, not now, not ever. You cannot convince me that it's importance outweighs the pain and suffering he has to endure. Right now we are at the three week mark of suffering caused by drugs that aren't even known for doing such. Here I thought that Samuel would be fine during this and now he isn't. So there is no way." Well, he kind of reniged then and said that he knew it would always be a tough sell and that if he really felt it was necessary he would push. But the conversation continued and I said, "I tell you what, when you decide Samuel needs Vincristine again, YOU take the first dose. If you do okay, then I will consider it." He just laughed and said that there were a "NUMBER of reasons he would not want to try Vincristine." I said that there were a number of reasons why we don't want to "try" it either. Samuel has paid his dues, I have put in all the hospital time I want to. It just can't happen. He said that he would not be a "good" doctor if he did not bring it up as an option and discuss it, or argue for it. I told him that he picked a good match for an argument because I was up for it. It was all a pleasant conversation and I was actually glad to get it all out, everything I have thought, written in this journal and did it in a way that was non offensive to him. Oh, I am sure he will continue to bring it up and that is fine, I will remind him that the first dose is his. The steroids will be hard enough to give at this point. He knows that as well. OUr visit did not include our other kids or Mark today because they were all being pretty good in the waiting room so did not have to be quarentined to solitary confinement. Mark came in at the tail end of the conversation and our Onc said he was just having a very LONG conversation about the treatment with me. Mark laughed. At this point, the two chemos that our Onc feels are most important for Long Term Maintenance are Methotrexate and 6MP. Samuel had these both previously with no complications and while I had issue with them last fall, I am not as uptight about them now because I understand the dosing and they are the safety net against any stray cells that might activate. That and what we do for him nutritionally and with supplements not to mention my milk should be fine. At that point, we are looking at going in once a month for a spinal tap and visit to check labs.
The rest of the chemo, the bad stuff is now in our past. It will remain there. This treatment is barbaric and inhumane and at some point I will have to come to terms with the fact that I knew this and still allowed it to happen. My prayer is that I never have cuase to question the decisions we did make because Samuel will forever be cancer free. It has come to my attention that St. Jude is researching ways to enhance the body's OWN Natrual Killer cells to battle Leukemia. Check this out.
What a concept! Actually doing something that is NOT toxic and empowering the body to fight the cells itself. Definitely a step in the right direction. We do this every day simply with diet but not to the magnitude that they are. I pray that they succeed. I pray that we don't ever have to contact them regarding our child. Donations to St. Jude for cancer care and research are not in vain. That is a hospital that is not solely run for profit, that is for sure.
So I told Mark that if we intend to give Samuel steroids, then we should all take them just so we can sympathize. I don't think doctors should prescribe drugs that they are unwilling to take themselves. Says a lot about the poison doesn't it?
Well, it has been a long day and I had to take a nap upon arriving home because I have been burning the candle at both ends lately. Thanks so much to those of you who read the last update and prayed for Samuel to feel better. God heard, He answered. We will play it safe around here for the next week or so until I see good color in Samuel's face and am sure his counts are up. Then I hope to never be stuck home again. I want to be free, I want Samuel to be free to see the world and enjoy. It is time to have a life. Much love!
Update 5/31/05
Things are pretty much the same around here. Samuel feels like crap. That pretty much sums it up. I don't remember him feeling this badly last November but maybe that was because he had only just begun walking and was never fully healed from all the different problems then. Since he had a few months where he has been really well, and really happy, it is quite noticible. His gut remains slow. The carrot juice I gave him for naptime yesterday is just now coming through. He is generally miserable and restless. I am sure it has fully everything to do with his gut not functioning. I cannot remember which nurse we had who told me about old folks who are consumed with being constipated all the time, you know those in rest homes and the like. Then she said whe had one bout of constipation and it pretty much consumed her until relief came. I think Samuel does not know what is wrong with him, meaning he cannot tell us what he is feeling, but if I had to guess, I would guess his slow gut is making him miserable. He has happy moments, and he plays, but they are very short lived. He will go into his room and shut the door and spend time alone. Little things that would not matter have become large annoyances to him. Right now, he just needs to go to bed since he was unable to take his afternoon nap. I am thankful that I can work from home because I would never be able to leave him like this. I am doubly thankful that Mark is home because nothing would ever get done around here witout both of us. I feel really sad about Samuel right now. I just want to kick myself for allowing him to be poisoned this time. We have discussed when we think this will work itself out of his system and figure we probably have at least another week if not longer. I guess that the ultimate step of faith is saying that we are done with chemo, for good. I hope we both get to that point.
OUr trip to the mountains was nice. It was actually a short drive from the house to the lake. We have a seven day pass and hope to get back there for a few more trails we found after everyone went to bed in the car. Samuel had a ball walking the trails and there was even snow on the ground. He is quite the trailsman and got his Dad's sense of balance. Not that I am a clutz, but being half blind takes a toll on uneven surfaces. Between Samuel and I, we were slow going. Mark says he is going to make me a walking stick and that it might help me. I really want to spend more time outdoors and walking trails so I hope it does. Else we will have to stay on more well groomed trails from now on. That sucks because some of the better spots are where no one else goes. If it was Mark and I alone, it would be no problem, he could hold my hand. But he needs to hold Samuel;s hand so poor Kaysha had to help Mama down the hill! Oh, well, it makes for some good comedy! All in all, it was a nice day trip. Samuel pooped out but was unwilling to admit it. Reminds me of someone I know! I wore A.D. in the wrap and can tell she has some equestrian in her because every time we stopped, she would start kicking! I miss the trails a lot, on horseback. Took all the eyesight trouble right out of the picture.
Thursday is clinic day for us. Just to check counts. I hope they are going up. Samuel has been physically well other than his slow gut so that is good. His G-tube site is still not healed up though so I know his WBC's are not back.
Please continue to pray that Samuel get better. Thanks for checking in on us!
My little sweetheart went to bed tonight and while sleeping I snuck in to kiss him and he started sucking his thumb. Never even woke up. Breaks my heart tonight.
Update 5/29/05
Samuel woke up happy today. Actually, it is a rarity when he isn't happy in the morning. It is the afternoon nap you have to be weary of. He has been a bit grumpy over the last weeks...not that I wonder why. But sadly, he takes out his frustrations on A.D. A.D. is a touch girl though and she can take it. Samuel's personaltiy and vocabulary seem to have exploded again. Every few months there seems to be a boost. He speaks in complete sentences rather than three word ones. He refers to himself in the third person such as "Pooper wants to eat." A person at the clinic asked if Pooper was the dogs name. Hmm. He understands different emotions that others may experience and will ask if you are sad, if you are okay, and play the "happy and sad" game with me. He says happy, you smile, he says sad, you poke your bottom lip out. Then he either says happy again really fast so you smile, or he hugs you and tries to comfort you. So currently he is dancing, jumping on the couch and singing. He sings a lot now. Mostly nursery rhyme songs but he knows quite a few. He also says his prayers at night now. A.D. can also sing twinkle twinkle and the little bunny song. Of course, she has heard Twinkle Twinkle since birth but learned the Little Bunny at the pool at the hotel last year. Samuel's gut is still slow today.
Now that it is getting hot, when we pass the hotel it almost seems like we are getting dropped off there. The hotel was nice, but would have been funn if Samuel had been with us. Last year today, Mark and I drug ourselves out of bed on what seemed a most defeated day. We had to leave to see Samuel at the hospital. We came in and realized we had the absolute WORST RN ever and were unimpressed. Samuel ran a fever all day but slept well. He had come back from surgery the day before with a catheter, an ng suction BUT they were able to remove his oxygen tube the day before. The ICU docs said he came out better looking than he went in. This day last year was the first time I was able to hold him in my lap, in a rocker. I sat with him for almost two hours. My butt was numb by the time I got up but it felt SO good. He was very sore when we picked him up and I remember it being a major deal to try to manipulate all the IV's and tubes. He actually rested comfortably for the first time in weeks on this day last year. It was nice given the torture he had to endure for the weeks previously. When I think back to LEAVING him there, I feel sick. At least in Seattle most surgery is not an ICU stay and IF you are stuck there, you CAN stay at the bedside. Samuel spent a lot of nights alone there at a time when he was unable to speak or voice any opinion. All he did was cry which they pretty much just ignored. We had a handful of RN's in the ICU who were trustworthy and thankfully we had Patty for his Post Op day following the surgery. She was the BEST and came in and dimmed the lights, shut the door, made sure his bed was absolutely clean, and made his sign which I still have for this day that says, "I am sleeping, please do not disturb me, love Sam." She taped that to the door and I have kept it since then. Someone understood. We turned him on his Baby Neptune DVD with the ducks he loves and left the volume really low. I am so thankful as I wake today that I don't have to leave the house to see Samuel. While things are not perfect, we are not there.
In thinking of getting his gut hooked back up, it is both scary and thrilling. Of course, we would all like to see the air bag go away. We changed that thing three times yesterday, which is amazing considering he is not pooping much. I am sure Samuel will be happy to stop getting it ripped off daily, or more. It is a horrible pain. But on the other hand, it will be the biggest leap of faith we will ever make. We will be hooking him up and that will end any more intense chemo. We have said no to all the chmo whick can do more damage to his gut. If he relapses, chemo is not an option at that point. We would have to go back and have ANOTHER ileostomy done first, then give all the chemo that ruined his gut in the first place. I cannot even imagine that. Don't even want to. Seems that closing up the stoma is shutting the door on this chapter of our lives and I hope opening the door to better things. I pray and say that Samuel is healed of cancer and we will never have to make the choices I wrote about above.
Well, the day is begun and I must get ready to go. Fun awaits in the hills with "Pooper the Explorer."
Update 5/28/05
Samuel lost his colon, cecum and appendix on this day last year. It was the most horrible day we had experienced other than perhaps his diagnosis. In fact, this weekend last year was the most awful slow weekend we spent at our previous hospital. Between the scraping the barrel for staff, Samuel being post op, and depression, it was just devastating. The knowledge that his colon was destroyed and leaking poop into his body for probably weeks before almost killed each one of us who tried to swallow that information. No wonder he was so sick. he had stopped talking long before this anyway, but it just kills me that he was unable to tell us something was wrong. I will never forget the shock on the surgeon's face as he entered the room during our meeting with our former Onc to give us the news. Everyone else was shocked as well. I pretty much just tried to hold back tears. There were times when I was glad to have Anna to hug and that was one of them. We were surrounded with staff members whom we considered friends, Patty, Tammy, Mary. My Mom was there and of courswe the fool Onc. They wheeled Samuel by us as we were discussing the quality of life issues, and I just got up and left to be by his side. At least there I could cry with less of an audience. I will never forget Mark being the rock that day. He managed to keep it together for my sake because if he had lost it, I would have just wanted to die. I wanted to kie anyway. Die to pain, sorrow and suffering. I thought that on that day, that we had hit rock botton and could only go up from there. That day was PALE in comparison to being told your child has had a stroke, his leukemia is back and they will want to radiate his head, and he has to have emergency brain surgery. That day happened 9 days after this one.
It was a horrible day, today, last year. And I am trying not to dwell on it though typing that last paragraph has the tears flowing. That day was the first in the life altering changes to Samuel in the name of "cure." Because of that, his gut will never be the same. Because of that, he continues to suffer today. His gut is still slow, very slow. He wants to eat and we are trying not to let him. He has spent the day begging for food. But given the amount of fluids I have ran through him and the basic NOTHING coming out of his bag, it is not good. Poop that is unable to come out regularly will sit and create bacteria and while I feel that his intestinal flora is good given the amount of protiotics I have given him, his lining is currently ruined from chemo. The "chemo poop" continues to slowly drip out. So I don't want to add more things to his body that will block the flow of things that need to exit. We do not know if his counts are still trending down, or now going up so it is concerning. I think it is safe to say they are not going up because his G-Tube skin is not healed.
I was interrupted in the midst of this update midday and spent the remainder of the day with the kids outside. Samuel is pretty happy considering everything. Take everyone outside and the whole outlook improves. I spent some special time with Samuel tonight playing with him and enjoying his life. Thanking God that he is still here with us, and happy. As Kristina says, he can improve VERY fast. I hope his gut is doing better tomorrow.
We will take a day trip to the mountain tomorrow to explore, maybe fish and picnic. I think that I enjoy being outdoors so much more now because of all the time I spent couped up in hospital rooms. I pretty much rarely left Samuel's room, much less the building in the daylight hours. So it is nice to get outside on the nice days. It cooled off significantly today thankfully! Time has really gotten away from me tonight, it is almost midnight so I will cut this short. Enjoy the weekend, much love!
Update 5/26/05
Ssamuel's counts....
WBC 2400
ANC 1100
HCT 27
PLT 304K
Well, his counts dropped significantly since just a few days ago. His weight is also down to 15.5kg from 16.1kg a week ago. Reflective of his current gut problem. His counts are expected to continue to drop over the next week so we will be very careful in being around others for awhile. I don't know why I am surprised and disappointed to see these counts, but I am.
It has been a so so week and Samuel has not been feeling too well and today was the culmination of it for sure. Today was by far the worse clinic day, travel day and well, the whole day sucked. Samuel had a spinal tap scheduled today so he was unable to eat this morning. I gave him some clear liquid before leaving the house which unfortunately leaked out his G-tube the entire way to Seattle. So he cried and screamed and his clothing was all wet by the time we arrived. That drive took a bit over an hour. He perked up when we got there, but quickly went back to being upset and screamed in thw waiting room so much that I put him in the stroller and wheeled him up and down the hall. But his tube kept leaking and he was not happy in the stroller either. I had tied on my new wrap prior to entering the hospital and had carried A.D. in with it and then had her in and out while we were there but decided to put Samuel in to see if he would feel better. He liked this for awhile because he was in the hugging position. But then he decided he did not like that either. Daniel also picked this day to be a pain in the butt and A.D. wanted to maul all the sick kids. It was of minimal relief to get a room. The bawling really never stopped after that. Samuel's tube had leaked to the point of skin breakdown around the site. One place was bleeding. Our Onc's wife came in to see Samuel since our Onc was in a meeting. Can you imagine two Onc's being married? How sad is that? Think of the conversation at the table at night. Anyway, I told ehr that I was concerned that his tummy was not empty and they were planning to sedate him. I did not want him to aspiriate. And his gut has never fully recovered, etc. I don't know why I even bother because they don't get it. She left to "talk it over" and meanwhile our kids were just awful! I went to the desk outside the door to ask for some lansinoh to put around the g-tube to try to protect the skin, what little was left, and the lady said, "are you in THAT room? No, we don't have any alcohol." It was THAT bad. And we weren't the only ones, there were a few other rooms that sounded like torture chambers today. Ugh!!!!!!!!! I hate that place! Anyway, after another 30 or maybe 45 minutes of waiting and me being ready to pack up and tell them where to go, they finally decided that he could go ahead with the spinal, they would just vent the tube, etc. We agreed to get it over with. This whole process took three hours. We left with the tube still leaking, Samuel still screaming and A.D. giving him a run for the money. Both of them konked out on the drive home until we made a stop midway and then they both woke. They proceeded to bawl the rest of the way home and of course, we hit traffic and construction at the most unlikely times and places and the drive home took TWO HOURS! We sat for construction for 15 monutes in one stop. I was so ready to get out and walk. And of course, the kids naps all being disturbed has not helped since arriving home. It is now 10:23pm and Samuel is still up. I just got A.D. to bed a bit earlier. We had record heat today and we are all dying. I thought I might sew but my sewing room has turned into the sweat shop again so I gave up on that idea. I might as well go to bed because tomorrow is another busy day. Aren't they all? I just realized that Samuel had never peed in the time we were gone today, six hours. And they forgot to order him IV fluids and of all the days he needed them, I think today was a major one. He is on clear liquids for the night to try to flush out whatever the current problem is. Our Onc's wife asked when his gut acted up again and interestingly enough, it was since the major chemo began. And our Onc even brought up the V word, and siad he won't be getting it.....REALLY? I guess he already forget that he won't EVER be getting it. Either he is cured or he is not. The Vincristine is not going to be a part of his cure at this point. What is wrong with these people? It is really frustrating to see Samuel better, just to screw it all up again. They even mentioned him being seen in the surgery clinic and I vetoed that immediately. I told the Onc, first the kids are DONE! And second, I think the problem is chemo at this point and it will most likely work itself out when the chemo does. His poop has turned to mucus again, or "chemo poop" as we call it. The kind of poop that signals low counts and the destruction of the intestinal lining. We mentioned "Chemo poop" to the Oncs who had never heard that phrase before. Well they did understand mucus just fine. I need to just end this because I am feeling REALLY grouchy.
We have a lot to look forward to and I am so glad to be where I am now. But it also seems that just when things seem like they are getting back to normal, we go to the clinic and get smacked right in the face with the reality that our lives will never be normal again. Mark visited a former work friend today on the way home who said she was so sorry about Samuel and was very sympatheitc and I told her the while there was no question that what he went through was a living hell, we are beyond it now and moving forward. I am really trying to look forward to the future, to fun things, to new things. I do, and most likely will always stop and dwell on the past, but I really want to move on. Going to the clinic and having Samuel be completely miserable can really ruin everything around you. It is just completely unfair that any child be subjected to this misery. It makes me ill.
Speaking of looking forward, I spoke with a sewing contractor recently and started to give her the gist os what I need, our situation, etc. The conversation was something like this..... "I don't have time to do all these tasks, I four kids, one of which is a one year old, and the other is udnergoing cancer treatment, has had 15 or more surgeries in the past year, and another big one coming up next month or so. My husband cannot work because we have lived in a state of emergency for the past year and I am leagally blind and cannot drive. My income is the sole income for the houselhold and I could work 24/7 and it would not be enough. But of course, I cannot work more than a few hours a day, sometimes not at all and everytime we get into a good groove, we throw a wrench into it by poisoning our baby." How do you suppose that sounds to a person who doesn't know you from Adam? I told this to Kristina last night and we both just laughed. When you look at it from someone else's point of view, it is amazing we get anything done at all. I will be meeting this lady tomorrow. I am sure it will be very interesting! Well, life is never really boring around here, I am sure you already got that drift.
Anyway, we hope to do some quiet family fishing and exploring this weekend. In a very remote location. Something fun to get out of here for a bit. Our Onc reminded us that if Samuel gets a fever, we will be coming in so please pray for God's protection for our family in the upcoming week or weeks as his counts go down, which I hate! Samuel is hopefully in bed now that it is almost 11pm and I am not far behind. I hope that tomorrow he is better.
Thanks to the special ladies who have went above and beyond in helping our family this week. Brooke and Beth, thank you! May the Lord bless you for wanting to help, and doing so.
Thanks to all who read, pray and write to me. Your support means the world. Much love.
Update 5/22/05
We did it! Everyone is breathing a sigh of relief that we are now done with this phase. There are actually two more weeks of chemo in this phase but all those drugs have been marked off Samuel's list so other than another spinal tap on Thursday, we are done for now. Most likely done for quite some time because of his surgery needing to be done. He cannot get chemo then while it heals. It is nice to get up this morning and not have to go anywhere!
This has been by far the most poopy pukey week ever. I swear the next house we move into will have hard wood floors and no carpet. Samuel has single handedly ruined our rugs downstairs. He had a good run at it already, hence his nickname, Pooper, but with the unique food combos I feed him, the carpet does net have a chance. Even worse is our vehicle. He has puked every day since we started this four day cycle. He made it Saturday until he went to bed and then puked up MY milk of all things. Yesterday, he made it to the parking garage at the hospital and then promptly puked in the car...again! As if it needed it!
His gut has really slowed down. Last night he got over 700cc's of food, more than 20oz and I would normally have to dump the air bag twice during the night to avoid explosion. But only this morning did it need it. I hope this works itself out soon and either hows us he has a kink or else goes away with the remainder of the chemo working itself out.
Samuel's counts have held this week with the only drop being his HCT which is not too surprising given his diet, and current GI issues. His ANC is actually up from last week. Still in a very normal range. This is the value that is most important in determining his level of fighting infection.
Samuel got his last poison on the inpatient floor. We sat across from a family in the waiting room that reminded me of my mom a little. The grandma was there visiting and taking lots of pictures on a Sunday. I don't know if my mom took all the pictures thinking they would be our last memories of Samuel, or that someday he would want to see them, or what. I am glad she did so we have some very solid proof of our miracle. It is still hard to believe how far he has come.
We ran into one of Mark's former co-workders who apparently did not know Samuel had hac cancer and he remarked that Samuel looked well. When you tell someone your son spent the better part of last year in the hospital, they just don't understand the magnitude of what we mean. It is hard to comprehend even for us at times because we have come full circle. Last year today, we had just spent a week in the ICU. The day we went up, Samuel cried that he wanted to go home. I broke at that point because then it looked like we were going backwards. Going from a regular floor to the ICU is the wrong direction from home. Mark spent the night with Samuel that night even though they did not let you sleep. He stayed up all night. My Mom convinced me to go home for the night. After that, A.D. and I stayed at the apartment each night. Mark would come for the day, then leave around 6pm to get the kids. I would stay with Samuel until around 11pm or when I finally got him to bed for the night. A.D. would pass out around 7-8 in her car seat so I would then have to wake her to leave. We had to go to the ER and ask for a security escort to drive us across the street since the neighborhood was so bad at night. Then they would wait for us to get into the apartment before they drove off. By then A.D. was stimulated enough to be up for another hour so I would take a bath with her and try to find some comfort. I mostly prayed Samuel would be better the next day, that I would see some marked improvement for sure. I never slept well because I was always sure I would miss a call from the ICU that Samuel needed me. Today, last year, my mom came in and Samuel was sent downstairs because it seemed that he was getting better. He had been on a drip sedative the entire week. That was stopped. He had had a catheter all week, that was removed. He was on NG suction, that was removed. I carried him in my arms downstairs and he shreiked the entire time. My mom was in disbelief that he was in that much pain. She actually could not believe they sent us down. IN fact, he spiked a temp right before we left for the regular floor. I was ready to be on a floor where I could stay with him again so I figured we would work it out there. Well, at first, he seemed okay. I went to the apartment and brought all my stuff over to the room. My Mom went to a Mexican food place and brought us back a good dinner since now we could eat in the room again. But as the hours passed, Samuel got more and more agitated. We wondered if the sedative was wearing off and he was in withdrawls. His heart rate was hitting the 170's with his respitory rate in the 60's. I finally had them come turn off the alarms on the monitors so we could get some peace. My mom left after I got Anna to bed for the night but Samuel only got worse after that. I had a wonderful RN, Debbi who was just a float nurse so not a regular there. They brought Samuel morphine, ativan, benedryl, etc this seems like the story of his life. Nothing helped. Shift change at 11pm brought me RN Barb, whom I had had before. Suddenly his oxygen sats went down and they put him on oxygen. He was so agitated that I could barely keep it on, so we opted for the blow by and I just held it. Soon, I had the charge RN, Joy in my room who said she was going up to the ICU to get the doc. Well, another hour and no one came. By then he was sating 80 on four liters of oxygen. They like it at 92 or above. I was so upset. I watned to go up to the ICU myself but was afraid to leave the kids. The charge nurse went up again and by then Barb was just sitting in my room, not leaving. I was so scared because I knew it was bad then. The ICU sent down the RT to listen to Samuel and she commented that he sounded really clogged on one side. Finally the ICU doc showed up, at 2am. They had an x-ray done and within five minutes of that, the doc was back telling me that Samuel's lung collapsed. "BUT, he looks really good and is doing very well considering!" How many times did we hear that? This has to be one of the most maddening nights ever. Anna was up about the time of the Xray so we all went upstairs. I knew that Samuel would get immediate relief at that point and was happy about that, but NOT happy with moving back up to the ICU, them missing this entirely, and not coming when we needed help. I called Mark the next day and told him I was done. After three weeks there, I went home for three days. It was the hardest thing I have ever done. I called Mark every hour and talked to Samuel on the speaker phone. Coming home was awful. I felt like I did not know what to do, who I was, anything. I hardly remembered being a mom to the older kids. They needed me and I was pretty worthless to them. That week, Samuel's other lung was tubed as well so he had two chest tubes, the cathetaer went back in, his ng suction was back, his oxygen was back and they added a double lumen line to his ankle because the port was not enough line to do everything that needed done. He still required four or five antibiotics and TPN, etc. At the time his lung collapsed, he had stopped talking again, and never really started other than when he would cry. Then he said No or Momma. Mark was heading home on a Thursday night and was called back because a CT showed an abcess in Samuel's cecum. I arranged for the kids to be picked up by Mark's parents and called Mark's sis in Tacoma to drive the 20 mintues to pick me up and drop me off at the hospital. I was so happy to see Samuel, who after the proceedure which attached another drain line into his body, was finally comfortable. He saw me and started crying a lot. I guess he had not cried at all until then. We stayed long enough to get him comfy and went to the parent apartments at 10pm. He was finally fever free for the first time in weeks. It had been almost four weeks at that point. The next morning we arrived around 7am and were immediately cornered by the surgeon who wanted to gut Samuel. Well, he did not say this at the time, but that is what happened. Samuel lost his colon on May 28, 2004. It had 1.5cm holes in it all over the place. It literally fell apart in their hands. We were originally told he would have a colostomy, but there was no colon when he was done. That was the worst day ever, at that point. I remember crying at Samuel's bedside and having my mom come up and hug me saying, that "what else could possibly happen now?" We sure did not have a clue did we?
Well, yesterday we went to the park with the ducks again to celebrate a little. I still feel like we have a secret when in public. We look normal on the outside but to see Samuel play and be happy again is just beyond any words expressing.
And when he got his chemo, the RN's mentioned his energy. Mark was with him and mentioned his good food. They wondered aloud what he was eating. Mark said that he is constantly amazed that the docs don't inquire more about what we feed him so they can help others. The difference between Samuel and most other Onc kids we see is amazing. Honestly, he is two extremes. Either he is doing a thousand percent better than all of them. He runs up and down the halls there all the time. Or he is absolutely more miserable than any of them when his gut is affected. I will take the former. I do wonder why they don't ask more about Samuel's diet and wonder if they just make more money on sick kids inpatient. Yes, that is a horrible statement, but when I was there, they do very little on the Onc side to help.
We are home until Thursday! It's a happy happy day! I spent some time working on the site yesterday. The new backgrounds on some of the pages are from pictures I have taken and places we have went. My new goal is to take lots of pics of the places we will go in the next months and add them as wall paper to my site. Hope you enjoy! Samuel's counts may still plunge at this point. Between day 14-21 they are thought to be at the lowest point. So please continue to pray he does fine. No fevers and he is definitely not sick. Our love and thanks for your prayers!
Update 6/20/05
Day two of four. We left the house late, my fault as always. I hooked Samuel up to his food on the way like I usually do to help dilute and offset the chemo he is going to receive. We did not make it ten minutes before he was puking. He also had diahrrea again. We ended up coming back home for clear liquids instead of the food he was getting and to change his clothes, get MORE towels and call the clinic to let them know we were going to be really late. After that, he was fine. I don't know what happened. Kaysha and Daniel went to Mark's parents for the day and that extra driving made for a long trip. A.D. screamed the entire drive home from Seattle and Samuel slept. I think the initial effect of ARA-C is to knock him out. Days to Seattle suck because nap times are always missed. Not that there is any scheduled time for naps, I put them to bed when they are tired which makes my life easier since I don't have to fight to get them to bed. A.D. has been pretty sad all day because she missed hers. Samuel went to bed with the added bonus of benedryl because I already know he won't sleep without it. He has been fine since the puking and while tired, played quite a bit. I am really tired tonight after staying up until after midnight the last few nights. I guess it has caught up. I think I would be bored if I did not burn the candle at both ends. I am looking forward to being done with this phase and for the poisoning to stop for awhile. I have dreaded many things in life but nothing has ever been dreaded as much as poison days are. Please continue to pray for Samuel to stay infection free and well in the next weeks. He is also still limping. We still don't know why.
Thank you so much for your love and prayers. Another long day is behind us.
Update 6/19/05pm
Samuel's counts...
WBC 3500
ANC 2200
HCT 31
PLT 349K
They are down, but not in the toilet. We were in and out of the clinic in two hours today which must have been a world record when seeing the Onc and getting chemo. It seemed really fast. Samuel is still limping today and when we asked the Onc, he could not come up with a reason for it. We talked about Samuel's gut and all agreed that while it seems improved, it is not totally better and I threw out the idea that his limping might be from his gut. Or a neuro issue from the Methotrexate spinal tap. I brought this up and no one wants to even go there. We are just not really sure why he is limping. Samuel is not complaining that anything hurts and when he first started walking last October, he limped for awhile so I don't know. It might drive me crazy. At any rate, all of his labs were within normal ranges as far as electrolytes, liver and kidney functions and we all agreed to continue with the Ara-C at this point. I asked the Onc what we are supposed to do about the ones me missed and he said we will just continue as if we did not miss them and finish. The minute he said that it was all I could do to not stand up and clap or jump up and down. The first thing that came to mind was that God just does not want Samuel to get all the chemo, he does not need it. That thought was impressed into my mind so strongly that I had Daniel go get Mark from the waiting room so I could tell him these exact thoughts. So, today was 1 of 4 Ara-C's. The next three days will find us in Seattle for the final doses and by final, I mean NO MORE. Our Onc then mentioned that he woud be due for the L-Asp that he can no longer get. It is now marked on his chart as an allergy. And he even mentioned the "V" word but said it wasn't even a subject he wanted to bring up given the gut problems have resurfaced. He mentioned that Samuel was due for another spinal tap and that they had time available tomorrow, but I declined that and put it off to the following week. He said he knew I was going to choose next week and handed me an appointment sheet with it already marked for then. Given that Samuel's counts are already pretty low, he will probably be neutropenic next week since the chemos are supposed to nadir between 10-14 days with recovery at day 21. So we will be living the hermit life for the next few weeks though I would like to take the kids back to the park on the lake with all the ducks again. The weather here has been rainy though so it may not happen. I finally remembered to ask the Onc about Samuel getting to see an eye doctor. There are some MD's at Children's and it might as well happen there since we are there so much. He asked me why and I mentioned that since I already have two kids with glasses, it made sense to check. And with the neuro problems that Samuel had last year which affected his eyes, I just wanted to be sure. Samuel's eyes seem different from everyone elses. he has hazel eyes. Kaysha and Daniel have light blue, and A.D. has one blue and one brown. Mark is certain his eyes are fine but I just want to be sure. I pray that he doesn't need glasses too although he tried on a pair of Kaysha's old glasses and looked adorable. Our Onc also mentioned getting Samuel in to the surgery clinic in three to four weeks to schedule his surgery to hook him up. I already know all this, but it is so wonderful to hear it out of his mouth for some reason. Just solidifies that we are nearing the end of the madness. After that, our clinic visits will be monthly unless there is an issue. I am so ready to be done with all this and at least onto a monthly regimen. We are all ready to say goodbye to the air bag as well. That will be cause for a party for sure. At least when Samuel is home and feeling recovered again. Our Onc asked if the G-Tube was better for keeping him hydrated than the NG, why, I don't know since they both go to the same place. But at least I could clamp off and knot the NG so it did not leak. Obviously, now after last week, if the G-Tube is leaking, we have a problem, so in a lot of ways it is better, except on clothing.
Samuel is feeling okay today. Seems better than yesterday but he always improves when we leave home. He took a big nap on the way home from Seattle. I think this is an ARA-C thing though because he always passed out for awhile after it in the past. This one can cause unexplained fevers and thus far, we have never had that happen. He played outside today but went to bed early. The next three days I pray pass quickly with no hassles. Please pray for Samuel, that God would protect his body from any infection, and surround us all as we commute back and forth.
Thanks to you friends who call, write and care. Our love to you tonight.
Update 6/19/05am
We are headed into the clinic today. Samuel has not been feeling well at all. He got up at 2am with an "air bag" explosion and then later with his tube leaking again. I pray he gets up feeling better today. I think that his chemo doese were higher this time because he is now three years old and it is hitting him. Please pray that he feels better. I hate to think about chemo again today but I think it will be on the agenda. I don't know what we will do about the missed days either. Sure be nice to skip them. I can see it is going to be another long four days of travel. Thanks for your prayers and checking in.
Update 6/17/05
Well, it seems we have dodged the bullet, for now. Samuel has been able to eat today without puking. We allowed him to eat in small quanities and he did well. His G-tube has stopped leaking which is a sign that things are moving through once again. Thank God! Thank you all for caring and praying for Samuel. It is amazing how quickly things can go downhill, and then turn again. My Dad once told me that you can get really really sick in a matter of hours, and it can take days to get better. That seems to be the case. The bad thing is that we really were under the impression that things are only going to get better. We were really taken by surprise having this happen to Samuel, now, of all times. I guess if we were to talk about scary, the scary thing is how fast things can turn south. Again, why I plan nothing. We are all breathing a cautious sigh of relief tonight and keeping fingers crossed that he is still fine tomorrow. Mark doesn't think that the car will recover from the puke episode yesterday. We need to rent the rug cleaner with the upolstry attachment it seems. Lesson to be learned, never leave home without four or five towels and several shirts. Even if things seem fine. As an old school friend told me, when you least expect it, expect it. Someone popped our balloon of security, that is for sure. I don't know why I thought nothing more could happen, or that we would be homefree. I reminded Mark today that we need to become hermits again with Samuel's WBC crashing. I need to get my act together and get my milk supply back up. I have never really recovered it after February's stay inpatient. I used to pump 10-12oz a night and now I am lucky to average 6. A RN told me she read there are 30K WBC's in an ounce of breastmilk. I don't know how accurate that is but it would only seem logical that more is better in this case.
I did not call the surgeon today and I am sure he knows my silence is good news. I did get a call from a very concerned Oncologist, however. He did not question our decisions and was first concerned that Samuel was hydrated well enough, and then about his WBC being so low. He agreed with me that the labs were concentrated and that the value of 4400 is probably high. So his WBC could be very low today. We are going in on Thursday for labs and a visit with him. If all is well, we will attempt to finish the chemo. One thing that the doc on call over the weekend told me is that by stopping midstream in treatment, we are prolonging his WBC being low. So I don't know what the plan is but I do know we will not go through with it unless Samuel is able to eat and get nutrition. The Onc actually agreed with us stopping chemo as soon as we realized a problem was at hand. How absolutely refreshing! However, I guess you could say we had our warning for the future and now know that Samuel is at a higher risk of these intestinal kinks and blockages in the future. I am just thankful we weathered this one at home, again. Now, we have noticed that Samuel is limping slightly, we don't know why. Some of the chemo suppressed the bone marrow and can cause bone pain, but he is not saying it hurts. Hopefully, it is nothing.
Thank you so much for your prayers and concern. I know God helped Samuel today. Please continue to pray that Samuel's body stay free of infection as his WBC is going down and that we all be in good health for the next month. Pray for safe travel. I pray that God bless each and every one of you who read, pray and continue to be generous in your sacrifices of love to us. Much love!
Update 5/16/05
We arrived to the ER at 10am and they did page the surgery team. The surgeon I talked to yesterday was in surgery so sent a resident. Samuel was evaluated by several people meanwhile his G-Tube opened up and leaked several times all over the floor. He was very upset because his clothing was wet and we ran out of shirts. He did not want to wear a hospital gown either. They drew labs and sent him for X-ray, for all the good it did. The surgeon came in after looking at the x-rays and labs and told us the x-rays looked normal, no blockage and the labs were also within normal ranges. This whole proceedure while captured in this small paragraph, took over three hours. I did not get a copy of th labs until we walked out and realized that Samuel's WBC was 4400. This was down from 8600 on Thursday before chemo. Even worse than that, his HCT was 39, up from 34.5 on Thursday except that he has been vomiting and had diahrrea over the last few days and nothing good to eat. This means that these numbers are concentrated. All his electrolytes were good other than sodium, again, these are concentrated values, meaning that the real numbers are lower. No one even bothered to check his creatnine, which is what bought out ticket in to the hospital the last time. I am sure that was a mistake. The surgeon glanced at labs, and said, all were okay. THen the x-ray was okay so it was decided Samuel did not have a blockage. Or if he did have one, it was resolved. Basically, same thing as what happened before. Only, now add chemo, so everyone wants to think he is sick from chemo. And they also cultured his poop for Rotovirus and C-Diff which were both negative.
We left hoping that they were right and allowed Samuel to eat some food. He puked a little in the car but it was hard to tell if he choked first. However, upon arriving home, he puked a massive amount of food up. Probably enough for a few days worth of eating. Suddenly, his diahrrea stopped and normal poop started coming out. I was happy thinking he finally puked it up and things were back to normal. He had his normal liquid diet last night and did great. He woke up happy and ran around like his usual nutty self. We allowed him to eat, thinking things were fine. Well, they aren't. He is back to puking up food. So it is obvious to us that he cannot eat FOOD. He can drink whatever he wants and that is now fine. So the good news is, that at least the nutrients are being absorbed. The bad news is that he cannot eat, and he really wants to.
The report given to the Oncs was that Samuel was fine. So I called surgery again today and told them he is not fine. I called Oncology who surprisingly enough had not contacted me yet. Our Onc is not even there today. So I left him a voice mail letting him know what happened and leaving my phone number because I am sure he will be wanting to talk it over. The surgeon told us to call him tomorrow if Samuel still cannot eat and they will order another upper GI study. He said if we were inpatient, he would do it now.
So we have had the exact same thing happen again as before. We know we have a problem, but because diagnostic tools don't find it, we are sent home. I reminded the surgeon of the "last time" and how nothing found the kink on top, which is exactly what this seems like and so we shall see what happens. If it does not resolve, it becomes a surgical issue. And worse than that, Samuel's WBC is crashing so surgery, in my mind, is not an option. And the last thing any of us want is MORE surgery especially when they are not hooking him up. The surgeon also told me that we could be dealing with these problems for years to come. YEARS. Years of twisting kinking gut, being hospitalized until it resolves and possibly more and more surgeries, causing more and more scar tissue. It looks like a vicious cycle.
As Monika says, he probably needs to be on complete and total bowel rest, which means inpatient in IV's until the problem either resolves or becomes another surgery to add to our growing list. I don't want to go in. I have totally grown to hate that place and the thought of another stay is driving me insane. At this point, we might as well all move in there ecuase if I continue to have to stay there for one or two week stints, we won't have a house to come home to soon, it is only a matter of time. I packed a bag yesterday that is still packed today. I told Mark I would just leave it packed and he mentioned I will need a bigger one since A.D. will be coming too after her last night without mommy. And if that is not enough, the kids have outgrown their pants. They seem like they are still new, but only because they were purchased last summer when time seemed to stop. I don't know what to do at this point. I want them to "fix" Samuel, but I don't want to go in to do it, I don't want him to have another surgery, and I can't afford to continue to not be able to work. My kids don't deserve this life. No one does. It would be one thing if they said, "Okay, we know you have a problem, let's all try to fix it." But instead, they pass the buck onto chemo, or something else. It is really impossible to listen to the MOTHER? Is is Groundhog Day again? Well, I am NOT playing.
I am sure tomorrow will be interesting since Oncology thinks it is all OKAY. Our Onc is probably going to want my head on a platter since we have stopped chemo once again. Not that I care, but for once, it would be nice if the diagnositc tools backed up my story. This weekend has proven to me once and for all how much I don't trust medicine, or this establishment to provide a correct diagnosis. I really hoped that it was over last night. Samuel is walking around saying he is sick right now. This is new and to be associated with puking since that is inevitably next. He did this in the car on the way to the market today, so we did not make it there today either. Mark had to go alone later on. I want to go to sleep and have it all go away. But instead, I am trying to tie up loose ends, again, just in case I am not here tomorrow, or for a few days, or a week.
Thanks for your thoughts and prayers today and through the weekend. We really appreciate your friendship and support. A few of you asked if I was scared. No, I am not scared. I KNOW what the deal is. I am pissed. Pissed that they can't figure it out, pissed about what this means for Samuel's future quality of life, and I am sure tomorrow will be even more disappointing when Oncology gets involved to tell me how bad it is to stop in the middle of the protocol. Thankfully, Samuel is not in pain, and I do thank God for that. HIs stoma is working fine so what is actually making it through, is coming out. Think of a hose that is bent and kinked. Only little drops of water make it out. That is what I think has happened to Samuel's gut. Monika agrees. It is unfortunate that she did not become a doctor.
Thanks for checking in on us. Much love!
Update 5/14/05
Our trip to Seattle was stopped midstream this morning when Samuel continued his throwing up from earlier in the morning. It was obvious that we did not bring enough clothes or towels. And he was puking food he ate several hours before so I knew we had a bigger problem. He made it through the night on clears and did fine, no puking, no uneasiness. However, after waking up starving, he ate a little food and immediately puked it back up. In the car, we got the continuation of that. So we decided that there was no way he was getting chemo in that condition and so we turned around. What a pain. I have spent half the day on the phone to the hospital because it really gets their attention when you call and say you are not coming and you are not going to the ER either. We talked about the ER briefly and decided against it since we knew that made for a ten hour day and they could not help us before, why would they be able to now. I pushed clears all day and Samuel has not puked since I stopped letting him eat food. After talking to the Onc Fellow several times, she called the Surgery Fellow whom we know well. I told her that if she mentioned our name to them, that they would probably freak and say we needed to come right in. Well, he did. But after talking to me personally, he decided that we could just come to the ER in the morning and he would meet us there. So hopefully we can wave all the BS associated with the ER. He thinks Samuel has a mechanical blockage and needs to be on IV fluids and bowel rest. However, he was impressed that I have been able to keep him hydrated today with clears so we may not have to be admitted provided things remain good with that. But he is also concerned about bacterial issues now because the output in the bag is over 24 hours old. We know this because bubbles from last night's tub are currently coming out into the bag if you can imagine that. If this does not resolve in a few days, then it becomes a surgical issue. More problems with that as Samuel now has chemo on board which will drop his counts somewhat. Not a good situation and I really don't want to go back there and live for four or five days while they figure it out. He seems better tonight and so I pray that that trend continues. We will know more tomorrow and chemo is on hold until this is resolved.
Thanks for your prayers and keeping up with Samuel tonight. Much love.
Update 5/13/05
Please pray for Samuel if you get this tonight. Either he has an intestinal blockage or he is puking his guts out from chemo. If I had to guess, I think he is blocked somewhere. He actually had a small blockage a few days back that we almost did not notice because it was so suttle. He wasn't puking then. Now he is. The problem now is that if this continues, we will be inpatient again in a matter of a day or so due to dehydration. This is not a time for this to happen because his nutrtiion is so important in helping his body eliminate the poison. He did not get sick like this with the other rounds of this particular chemo so I don't think it is from that. However, it is concerning that his gut may be acting up again.
Yesterday was a long clinic day but only because they are never on time. Our appt with the Onc, not our Onc by the way, was over an hour late. It was 5pm by the time we got into our room. I was not impressed to find out we were placed not only with another family again, but with a child who was sick and wound up puking most of the evening and the better part of this morning. I was pretty pissed off, more so for that family than us because that poor kid just wanted to sleep and Samuel was not able to be quiet. It is SO STUPID to put cancer kids together. What is this place thinking? Oh, and let me tell you how joyous it is to listen to someone else's kid puke their guts out all night and topping that off with RN staff who were not compassionate. I really think that anyone working in the Oncology field should have to test the chemo themselves first so they will know how to treat kids and families. I don't know why it is that I always get stuck with a prime example of why I hate chemo everytime I question if we should continue. It was all I could do to not walk right out of there. I am going to ask my Onc how he would feel rooming in with a kid who puked all night, I bet he would not like it. I bet he would never do it. I just wonder if anyone thinks around there! I was glad Samuel did not really notice. An older child might experience a mixture of emotions from fear to disgust. I know I experienced several strong emotions during this time. I am so glad to be home!
Mark had a two hour drive home at that hour and Anna refused to drink my milk so their night was not fun either. Mark said she got up and when he gave her the milk, she screamed, "NO!" Then proceeded to spit it all out and then screamed, "Mama." It sounds pathetic on paper but I ROFL on the way home because Mark does the impression of it so well. Poor A.D. has been traumatized again. I don't know what we will do when Samuel has his next surgery if she won't drink anything.
Samuel did not have any reaction to his chemos while inpatient. In fact, he was actually sleeping the entire time because by the time they got around to doing them, it was after 8pm and he had not had a nap all day so I asked for Benedryl knowing he would never sleep without it. He briefly got up for some chips at midnight and wanted to play but at 1am I finally turned lights out and said enough. We slept in the tiny bed together so he got the point pretty fast. We got up at 8am, woken by the anesthesia resident to make sure he had not ate recently. He was not allowed to eat until after his spinal tap which was at 11am. He pretty much begged for food all morning. Mark forgot to leavfe me money for coffee so I had nothing for the entire morning until he arrived. My head was pounding from the lack of caffine. It was probably a good thing because I am sure if I had walked in with coffee, Samuel would have wanted something too. Trying to get out of there was fun. Since we had a proceedure inpatient, we were not released first thing in the morning so we had to wait for almost another hour after the spinal. Mark had only brought Anna which was good since we had shared a room, but she was unable to stay on our side of the room making life miserable. Kaysha and Daniel went to Mark's parents to stay the night today so they at least get out of tomorrow's drive and got out of todays too. We finally walked out of there at about 1:30pm. Samuel did fine all day, slept in the care but the minute we got into the front yard, I opened the door and he let out the "cough of doom". The one that means there is a puke behind it. And sure enough, he puked all over himself, and his car seat.
After that, he got better and played, got into the tub and had to have 4 air bag changes today. Later on, he puked again. Not tonight, he is puking again. I switched him to clear fluids because what is coming out of his bag is diarrhea and that is why it is critical he stop puking. Now he is losing fluid from both ends rapidly and nothing is staying down. I wonder if it was his chips from last night. The last one was from a hot dog so we stopped letting him eat those which does not break my heart at all. However, it is very troubling to see him having problems eating food again. Not good at all. Makes me wonder if we have another kink. He will be having surgery anyway, BUT we cannot do this every three months. Well, he is coughing again and crying so I need to go check on him. Please keep him in your prayers and thanks to those who prayed for us last night. Much love!
Update 5/12/05
Monika sent this to me a few days back...
When I read your update the other day, I felt sick at the thought of
everything that Samuel has been through. Physically sick. When you stop to
think about it, you get vertigo. Can't believe that is where he has
been...!
That is what you are suffering from. Vertigo.
You are far enough way from it to examine it, but the farther you get, the
scarier it is.
Again, she hit the nail on the head. I began feeling mentally better on Monday. My ear stopped hurting on Tuesday. I think Mark is finally on the upward swing as well. But today I have the vertigo Monika speaks of again. I was up at 3am with A.D. who was apparently starving to death and could not help but shed a tear. I hate today already. I have been dreading it more and more as the days have passed but this is such a cruel fate. I feel like the bad guy because Samuel has no clue what he is in for. While they put poison in, the is so innocent and trusts me to do the right thing for him always. Here he is finally feeling well and now we go back to that again. I hate it. I called Monika last night so she could remind me why I am doing this and her answer was, "You know why." Well, I do, and I don't. It would be one thing if the treatment wasn't poison and did not destroy body parts. Or worse, it just does stuff you don't find out about until months or years later. Everyone says he "needs" this. I guess one part of me will never believe anyone "needs" this crap. I am constantly surprised at the people who just accept the bad aspects of this treatment without a problem. Even if it is for their child. For me, that would be different, at least I am consciously choosing what to put in. But for Samuel, what I choose now will determine the fate of his body forever. He has to live with the consequences. Someone sent me a note the other day from Erinn saying, "I know your doctors can't make you any promises, but it just wouldn't seem fair for a boy and his family to go through so much and have to suffer more." Doesn't that just sum it all up? I remember feeling very anxious and scared when we started this phase back in November because we had no clue what to expect. I don't feel quite the same today as I did then, but like MOnika said, being able to really examine what happened to Samuel last year is very frightening. In those first months, I said over and over, that if we could just get him OUT of the hospital and home, everything would be better. Of course by then, we weren't going anywhere. Taking him home would have meant taking him home to die. When we finally did go home, he began speaking in less than 10 days after not speaking for two months. He improved in leaps and bounds from there. I am determined to NEVER get into a position like that again, ever. Thinking of dumping all the poison in today for our no guarentee cure is driving a sword into my heart. It is so unfair what these poor children go through, and their families.
So, I have not packed yet and will leave it for the last minute since I am in no hurry to leave. We don't have to be there until 1pm thankfully. I should be home in 24 hours after that. I made his food last night and have some milk stored for A.D. and Mark. The kids are already sad that we won't be coming home. Samuel is such a trooper that I am sure he will be fine where ever he sleeps. I am thinking "yuck." I pray that this is the last time we ever stay on the Onc side of things.
Samuel's stoma has changed dramaticly in the last week or so. It has went from looking like a red lifesaver to looking like polish sausage sticking out sideways. It has a definite shape and looks healthy. Very different from ever before. Monika thinks that finally the drugs have worn off and he has a healthy gut. Just in timre for ..... Anyway, interestingly enough the stoma looks like it is coming out like a hose. I called the Ostomy RN's who said it was a prolapse of the stoma and not a problem unless it gets blocked. If he were a permanent stoma child, they would just revise it. But call if it starts looking like an elephant trunk.......oh, now that is a lovely picture. I also talked to them about his next surgery and getting things hooked back up. I guess we will make a clinic appt with the surgeon as soon as counts are good enough. Samuel's stoma was done on 5/28 of last year and unfortunately we will still have it at the anniversary date but hope to see it gone by the end of June. I wondered if he remembered pooping with his butt and got my answer the other day. He came out and told me he pooped in his pants. I laughed and humored him. I changed the diaper and found a ball of mucus from his butt. I guess he really thought he pooped. I was kind of happy at that discovery and knowing that he does in fact remember what is normal.
Well, my fabric did arrive Monday and as I spent some time sewing, I took a lot of time to think of my correspondence with Pastor Louise and how it relates to Mark asking me why I keep up on so many other kids and read about tragedy everywhere I look. One of the things she wrote to me was, "We do not always see or understand why God does what He does. I know He responds to prayers. If no one was praying, He couldn't intervene. " This is a bit out of context in regard to my questions to her but applies to why I follow these kids and pray for them, or request prayers for them. We live in a world controlled by Satan. As Louise says, if NO ONE is praying, God can't intervene. I have no doubt that it was the incredible amount of prayers offered up for Samuel that got us where we are today. I don't think one can ever have TOO much prayers on their behalf. All these kids deserve to live. No parent wants to bury their child. No parent wants to watch their child suffer. I want to pray for these kids because I want God to help them. I ask you to pray for people sometimes ones you don't even know names for. The beauty of God is that while you may not know who you pray for, HE knows my heart and He knows who I meant. One of the very first things we asked for when Samuel was diagnosed was prayer. Mostly because the things of this world were no comfort to us. There was really no joy at that time. Nothing helped. My Dad once asked if I wanted him to come up from CA to be with us. I told him to stay home because there was nothing he could do. No need for more people to suffer and feel helpless alongside us. We could do that all alone. So many people wanted to help by DOING something tangible but the truth is that tangible things mattered least at that time. We just wanted what we have today, Samuel, home, healthy, happy and enjoying life. Being a boy who has fun, laughs and says it is a happy happy day. All the money in the world would not buy that, could not buy that. While part of his cure did come from doctors, the majority of it came from prayers and God. Any medical professional will look at his chart, all of his problems and tell you that they cannot explain why he is normal today. he should not be in their opinion. Miracles do happen for those who believe, cry out and pray to God to change things. Maybe we are just not praying the right things as far as cancer cures go in general. Maybe we need to cry out to God to show man the miracle cure that does not involve poison and more hurt than help. I cannot get past the Bible saying that the body is a temple and not to destroy it, yet that is what we will be doing today. I don't believe that chemo is Biblical medicine and never will. I don't think this was God's plan. The more I learn about nutrition, and life before the 1900's, the more I believe in the things we have done for Samuel to keep him cured. These things that give his body life in spite of poison. I pray that I have armed him physically enough to make it through this bout continuing to amaze the docs with his strength and resilliance. If I am going to allow him to go through this it will not be without every armor possible. I am so thankful that I still have my milk to give him the WBC's that are stolen by chemo. That is God's gift to us right now. Who knows, maybe MY WBC'S have killed his leukemia and not their poison. We will never know for sure. At any rate, we will press on with his diet of live food, vs dead filler food. I guess I need to think about what to take along for ME to eat while there because the hospital menu would keep anyone sick and stuck there. In some small way, I am a bit excited to see what new miracle God will do for Samuel in spite of this treatment. Louise's note to me reminds me that we need to ask for prayers, and the more the better.
My spirit is in a state of unrest right now because of this treatment starting and also because I feel like I am not doing what I need to be doing to fulfill God's plan in MY life. I feel like there is something more for me to do that will actually help others and I am praying that God show me the path I should be on so that I can be of more use to others in the future.
I need to close this and get ready for this day. Please cover us in prayer, not just today but everytime you think of it in the next weeks, months and beyond. Just as God is not done with us, neither is Satan and for whatever reason, I feel that very strongly today. My gut has never been wrong about the future events when it comes to Samuel. I think a lot of people stop praying when things are good, but that is when we should pray the most.
My heart continues to ache for a family who has lost a newborn baby, please say a prayer for them. This really has me on my knees. God knows who they are, some of you do too.
Our thanks to you all who have gotten us to this point, your friendship, prayers, notes of encouragement mean so much. Much love.
Update 5/9/2005
I haven't updated in a few days because I have been trying to shake some awful feelings, attitudes and worries. This seems to be only affecting me, thankfully. Everyone else is fine other than Kaysha got sick and it spread to Mark and Samuel and I also have a little touch of it as well. Pretty much my ear is the only thing affected and I really wish I was deaf because then I would not hear things I would like to block out. I always joke with Kristina about the benefits of being blind, such as not being able to see what I look like in the back view of a mirror. Or being able to sing in front of a ton of people, but I don't see them all so it only seems like a few. Right now, I wish I could have that benefit in looking at things in my heart, but unfortunately I do not. What is worse is that I know I should be feeling better, things are well with Samuel, and I could kick myself because I take now as an opportunity to feel depressed.
I called Kristina to "dump" all my issues in her lap and she immeidately pointed out that I was under Spiritual attack. I guess I just did not put it together but between taking to her and talking to Pastor Louise, it is obvious. It seems like everything that could go wrong did last week and I hope the trend is not going to continue into this week. One day when Samuel was not feeling well, he was outside and I looked at his skin and began questioning Mark about if he looked pale, meaning his hematocrit was dropping, leading the the R word. Okay, that was not a good feeling. And no one felt like doing much of anything the last few days being sick so we did not accomplish much here. My freight was lost in the Fed Ex system last Tuesday so I have been unable to work because we are completely out of fabric. I see it has scanned on a truck this morning so I hope it actually does come today. I guess I did not realize how much time my mind is occupied when I work because since I have not been able to, wow, my mind has me doubled over.
The personal tragedies of others that have occured in the last weeks has really got me on my knees.. Mark asked me why I even bother to check on others, as if "we" don't have enough problems. I can't really answer that. I guess I feel like we got our "happy ending" so to speak, or at least, thus far and I want to be able to pray for others in need. I thought I could help in that way, but instead, I wind up in awe of how much tragedy there is in the world and how one split second can change your life forever. And maybe it is worse for me to read this stuff because I KNOW what that moment feels like. And I KNOW how long it takes to recover from it. Seeing as how I have not obviously fully recovered from our moment, I just hate to see anyone go through it. While the situations are not comparable, knowing the burden of the pain they will experience is killing me. Sharing a little of the pain, crying tears for others whom I do not know, have never met makes me know now how others felt when we were going through everything last year. I know what it is like to be kicked in the stomach and watch every part of life as you know it drain out. Then once you recover from that, you get kicked again, and again and again and it seemed like we would never get out of that vicous cycle. I just hate seeing people go through that kind of pain. The good thing for most people is that they will never experience such horrific things, but that is also the bad thing because the majority will not know how to respond to it. This is something we have witnessed first hand. Something that was mentioned to me when we knew Samuel was going to come home in July of last year was that a local church wanted to have a party for us. All we wanted at that point was to get our baby home and have some privacy. We had spent three months with no privacy, at the mercy of others. Plus Samuel did not walk, talk, and could hardly move without pain. He was terribly afraid of people. To us, it was not a time to celebrate. Our baby was home, yes, but he was far from recovered. At that point, we did not know if he would ever recover. The church mentioned cake and I literally wanted to be sick. I had my mom handle it, telling them about Samuel's condition. One of these people had actually come to the hospital and seen Samuel's condition first hand but I guess it just did not register. Maybe they thought when we came home that he was fully recovered, I don't know. So at that point, I am sure we seemed rude to people who only wanted to help and share the joy of us coming home. Since then, we have never heard from them again. It is all about timing, and knowing who to contact in regard to needs. It is a very delicate time and everything makes an impression, either good or bad. At any rate, my heart is broken for these people and I pray that their hearts are healed and that God send the right people into their lives who can help without hurting.
I hoped I could write something glowing and lovely for Mother's Day but I just could not. I guess Mother's Day for me is not, and has never been about the gifts. Gifts mean nothing in the grand scheme of things. Had we felt better, we would have taken the kids somewhere fun to play and enjoyed them enjoying life. Nothing makes me happier than seeing them go somewhere fun and play, especially outside. Watching them discover new things and seeing everyone get along. Hopefully we can get out this week one day to do this before Thursday. Samuel colored me a buch of scribble pictures and gave them proudly to me for Mother's Day. He was so adorable. Anna has been climbing onto the kitchen table and dancing, much to our dismay. Kaysha and Daniel also showed their appreciation but around here, they do that every day.
Last Mother's Day I was in the hospital with Samuel. My Mom came in to spend the day so Mark could stay home with the kids. I did not even see them. A friend brought me a "Mother's Prayer" book which I have cherished and used to pray over Samuel for the past year. This day last year, was the last time Samuel ate food for almost three months. It was the beginning of what seemed like the end and we did not even know it. So even though I have felt heavily depressed about some things this last few days, our Mother's Day was heaven in comparison.
Please pray for families living in personal tragedy today and every day. Pray that those around them know what to do to help them and that they would always understand that even as time passes, the hurt and despair lingers on and obviously can strike at any time. Pray that those around them never become weary of doing good and are not easily offended because that is the key. Knowing that you are all praying as you read this helps my heart a lot today.
Please pray for me. I need to get my act together before Thursday when Samuel will be inpatient for four different chemos. He will have a spinal tap on Friday which will again, determine remission status. Pray that every poison only kill cells that are bad, and that the Lord protect his good cells. Protect us in our travel and give us the means to keep going. While we are hopefully getting to the end of this drama, the mountain of the next few months seems enoumously large suddenly. Thinking of poisoning my baby again is suddenly driving me nuts.
Happy Belated Mother's Day, friends. We love you!
Update 5/4/2005
Samuel has been playing and spending a lot of time outside the past few days. Our weather has been lovely and nice enough to wear shorts. Yesterday, we took him to a nearby park and he was able to go down a slide for the first time alone. He also was able to climb the ladder up by himself so he was really excited. He probably hit that thing about 50 times not to mention took several laps around the park. Anna had a lot of fun running around too although she was easily sidetracked. Kaysha and Daniel have spent a lot of time riding their bikes. I swear the last time I watched them ride bikes they both had training wheels. Our trip was the first time I have seen them both ride without. Now, they ahve outgrown their bikes and will need bigger ones. Today we spent some time out on a nice paved trail that runs between several local towns. It runs by a creek, lots of horse pastures and the hiway. Lots of bridges and hills, things to excite small minds. Everyone had a nice time. Samuel walked a lot and looked at an ant hill among everything else. Anna "stopped and looked at everything that was shiny, just like a woman..." says Mark. The older kids once again rode their bikes. I looked at all the places with land and livestock and dreamed. It has been nice to get away from the house, get some exercize and think.
This ends the update on Samuel, the rest of this is my personal ranting which many enjoy reading.
Our start of chemo has been rescheduled for the 12th. After looking at the big picture, there was no way we could do it today. I called the clinic Monday and the scheduler's first comment was, "Oh, he is going to be mad." I asked why he would be mad. It is not HIS kid. That irritated me and I told her that if he was mad, have him call me personally. I am sure that these doctors have not a clue about households that operate off a WAHM income because the dad cannot get a job because he is the only one who can drive to Seattle on every whim they come up with. We have tried to figure out how or when Mark could work again, or what he can do at this point. Who wants to hire someone who needs the better part of this month off, possibly the better part of the next month off. And needs to be able to take a day off with ten minutes notice. It really makes my head spin right now trying to figure out how this is all supposed to play out. I am going to say this for the record...I cannot do it all! I am going to go crazy trying. I am sure our doctor probably does not even realize fully our situation right now. The thought never occurs to them as to why we ALL come to the appts. I have really had it tonight. There are not enough hours in the day and it is probably a good thing because I would never rest. No one ever plans for their child to get cancer, or some other long term illness but you would think that hospital staff would be a little better at understanding the need to plan things out especially when you are taken by surprise. While our situation is pretty unique, I am sure there are many others in similar circumstances. I check on many other kids battling cancer daily and occasionally see vent posts about the utter lack of help from family members, friends or neighbors, etc. I don't know if people don't know how to help, don't want to help, forget you still need help, don't care anymore, or simply cannot deal with reality but the fact of the matter is that ANY help is appreciated. I have found in the last year that with certain individuals, they wanted to do this or do that, or be a certain type of friend, and when that did not happen, they opted out entirely. I guess that is the fallout that comes with a life shattering experience. I had a friend who helped me get through my brothers death who said that for most people, they go to the funeral, they mourn, they feel bad for the family, whatever, but then they leave and after that, in their mind, it is over. They go back to their lives virtually unaffected. I wonder if a similar instance holds true in a situation like ours. At diagnosis, there is a lot of support, but as the newness and shock wear off, then so do the supporters. I guess it is a hard thing for an outsider looking in to understand and it is not their fault. Maybe we, the ones going through this need to remind people that we coud still use their support. I guess, in my mind, I think people should just KNOW without my asking and if they don't then I am not going to bother to ask. Or, my other thought, people have helped enough, don't ask for more.
When I say support, that means a number of things. Support is not just financial though financial is very helpful when your kids need shoes and clothes for summer and you are trying to scrape up the house payment. I see tons of people who need help keeping their house in order, finding things for other children to do, organizing, spring cleaning, cooking, childcare or hey, how about the parents need a night together, without kids? What is wrong with dinner out? Now, in the past, I have had many online acquaintances offer to do this for us and while I appreciate it and know how sincerely you want to help, this is something that FAMILY should do. As are most of the above things I have referred to. People who are online friends are invaluable support through e-mail, phone calls and some whom you are lucky enough to meet. The notes, guestbook entries, and love from the online community has gotten me through some awful days. Some of the notes I have received have been full of the exact words I needed to hear right then, and are engraved in my mind still today. I will be forever thankful to so many of you for your support. I try not to post specifics to our personal needs or our situation because this is a public journal and you friends online have helped enough. Writing it all out feels like asking for help from people who have sacrificed a lot to us. I guess I feel that if people truly want to help, they will. And if they do, it is not because I wrote something asking. That is the blessing I feel because it was given without strings, or with the intent to gain something. I am amazed at the complete strangers who want to help, do help, and the family who could really help but don't. There are a lot of people here locally who need to step up to the plate and realize that the next few months for us are not going to be easy.
Personally, I am irritated at certain people who KNOW our situation and ignore it. I can post it here because they don't read the journal, and if they do, they pretend they don't so they can be irritated we did nto call them personally EVERY day. The whole point of the journal is so that I don't have to because I honestly don't have the time. They can just as easily pick up the phone, but obviously THEY don't have the time either. Ignore it and it will go away, right?
The rate of divorce for families with children with life-threatening diseases is 90%. Is that shocking to anyone? Probably the same for marriages where a child dies. Is is really asking TOO much to have someone offer to come stay with our kids for an hour or two se we can go out to dinner...ALONE? The last time I went out to dinner alone wth Mark was the month before Samuel was born. And, no, these kids cannot stay with a sitter. First there is not one available and second, Samuel would never allow it. Here is the sad thing, I know I am not the only one who feels this way. I read it all the time on other sites. It is a very good thing that Mark and I had such a solid relationship before this last year or we would have never survived. But, in the grand scheme of things, our marriage is important and it is pretty hard to continue to build OUR relationship when we are Mommy and Daddy 24/7.
Right now, I am looking at the next few months and I honestly don't know how we will make it. All planning aside, I will have to work my butt off and the fact is that I am really tired. I am emotionally burnt out over our situation, the situations of others and the continued tragedy all over the world. I think I wait until things are good to have an emotional breakdown because I recall doing it before when things were decent around here. I don't have anyone to fight right now, so all guard is off I guess. I know I am all over the road in this post and well, it is late, and I needed to get this out so I can go on and figure out what I need to do to get through tonight, and tomorrow. Can't even think about the next day because there is way too much going on in my head.
I realized yesterday, that last year yesterday was Samuel's last day home. Today, last year, we made the decision in about ten minutes time to pack up and take him to the hospital. He started out the day kind of miserable but went from bad to worse. I had put him down for a nap on my bed and later came in to check on him and found him awake, staring at me, but not talking. I knew immediately something was wrong because he always cried, or talked or watned to get up. This time, nothing. I felt him and he was burning up with fever. We called the clinic and no one answered the phone. I left a message. I could not believe that during a normal clinic day, no one answered. I called several more times, only to have no one answer. We packed up and hit the road. Samuel had gotten into the tub that morning but was pretty listless. It was his last bath for over a month. We finally got our call returned within five minutes of the hospital and I madly informed them that we were almost there and they better be ready fur us. It was determined that Samuel had pnemonia and his WBC was 600, ANC was 24. He had NO way to fight it. I was giving him my milk at the time but he pretty much had given up on eating and drinking by then. He hurt too much. And when he hurt, he stopped talking so trying to figure out what hurt was very hard. He was admitted and Anna and I prepared for the night. One of our RN's helpfully told me that Anna should be picked up and taken home around 2 in the morning. We were pretty much up all night because this was the start of them not being able to manage Samuel's pain.
I never thought that today would bother me so much but it has been an awful thorn in my side for the past two days now. Suddenly, I remember it like yesterday. I am so thankful to be home, with Samuel happy, but I guess the what if's have set in. Trying to figure out what the last nail in the coffin was. It is driving me insane because thinking of it is so awful. At that time, I was just trying to cope from minute to mintue. Now, I see the grand scheme of things and know so much mure about the effects of each drug, etc.
Our former Onc came in the next day ready to give chemo. Chemo EVEN THOUGH he was so sick. But he assured us that Vincristine would not affect his counts but would kill leukemia and so we agreed. As I sat and looked at Samuel's labs from that time, I see that the Vincristine did affect his counts each time it was given. HIs WBC started to recover and he did start to eat and drink my milk and his ANC even hit 500, then 1000. But then the poison set in and killed it all. We went in on a Tuesday. He got Vincristine on a Wednesday. He was miserable all week, but rarely talked. Everyone told us that with pnemonia, it hurt too much to talk. I accepted that. He did not want to be held. Again, everyone told me that he would be really sore, I accepted that too. I spent Mother's Day with my Mother at the hospital. Mark stayed home with the kids. Samuel had had a rough week. The following Monday after Mother's Day, Samuel woke me up at 5am asking for kisses. It seemed strange but I was so happy to hear him talk and ask for kisses that I gave him lots of kisses. He held my face and kissed me five or six times. After that, he was mostly silent for almost three months. That was the last affection he showed me. After that, by 8am, his heart rate fell to 50 while he was awake. The monitor started beeping constantly. A RN came in to manually check if it was right and confirmed it was. I began to freak out and demanded someone come and see what was going on. Another RN came in to give Samuel his steroids and I refused to allow it. About five mintues later, I got a call from our former Onc who was not happy I refused. I told him he better figure out what was wrong NOW. He said he was not able to come over and sent the PICU doc in. She did not come in for another hour or so and said she was not concerned about the rate while he was at reast, but when he was awake it was not picking up and that was concerning. I literally wondered if his heart was going to stop at any moment. I spent that entire morning in tears because I did not know what was wrong and no one else seemed to think it a big deal. Later, his HR picked up into a more normal range of the 100's. I was relieved. And EKG was done and everything looked normal so everyone figured it was just a fluke. Well, the next day it happened again. That was Tuesday. Still no one could explain it. On Monday it was discovered that Samuel's bowels were really quiet and we realized he had not pooped in four days. I did not think much about it because he had not really eaten since getting so sick but he was started on a stool softener. This worked within the day and for the next 24 hours he pooped so much that it literally burned out his anus. Of course, we know that now, we did not realize it then though we knew it was not good. Well, Wednesday rolled around and our Onc came in and I was determined to NOT allow chemo on that day. He said he was going to hold chemo. Well apparently he did not get around to putting it on the orders and the chemo was given. I was asleep at the time. Mark was there but assumed that the Onc changed his mind. When I found out, I cried for the rest of the afternoon. Our baby was this sick and they still poisoned him anyway. Someone brought his stool softener in that day and I refused it because I figured he could not possibly have any poop left and his butt was so sore that it was unbelieveable. That was the last time he pooped with his butt. After that, there was either nothing, or mucus, or mucus mixed with a drop of blood or poop. But NO stool. It was later learned that mucus is a sign of bowel injury, Monika told me this. All the signs were there and no one noticed them. Well, Samuel had also stopped eating on that Monday he kissed me and his HR slowed. He refused to eat after that. We managed to get droppers full of my milk into him but other than that, that was it. Our Onc was concerned that he wasn't eating or talking but his WBC was recovering on Friday and his temps were subsiding and the pnemonia was going away so discharge papers were written with the stipulation that his WBC be up the next day and no fevers. We all figured that Samuel was just depressed with the hospital and his condition and being so sick and having so many people messing with him all the time, and he would talk and eat when he got home. I will never forget the Infectious Disease Doc learning he got Vincristine that week and saying, "well that will set you back a bit..." Yes, try three months at the very least. Early Saturday morning, about 1am, Samuel woke me up and actually said he wanted water. I was amazed to hear something come out of his mouth. I got him some water and then he said he wanted to watch a show. I was not impressed because of the hour, but turning on the TV. I was just happy to see him feeling like talking and thought it was a good sign. Well, not too long after that the alarm on the monitor started goin off like crazy and I walked over to see it and saw Samuel's heart rate was now in the 180's. I could not believe it. Our RN came in and asked if he had been playing or jumping when she saw we were all up. I said no, we were just watching TV. She immediately did his vitals including his temp and found he was running a fever of 102F. I could not believe it. They brought tylenol which did not help anything and he could not get ibuprofen due to low platelets. So he was again, miserable all night. I called my Mom at 2am to have her pray with me. We could not believe it. Samuel's heart rate did drop to the 160's but I ended up getting him out of his bed and laying in the bed chair with me to see if I could help him at all. He cried for his bed so it did not last. We ended up being up all the night. I called Mark about 7am to let him know we were not going home. He arrived around 9ish and we noticed that Samuel had stopped peeing. His abdomen had also started growing and he was in considerable pain. Everyone just thought he was constipated and the stool softener was given again. But nothing helped, nothing worked. He suffered all day. Around 11pm that night, he started puking up bile. Green liquid. He also got so agitated that he tried to rip off all his leads to the monitor, the oxygen and his port. Our RN came in and was the same from the night before and told me they needed to call the doc right away. They came back in to ask if I was okay with an NG suction to be dropped. I asked if he would stop puking and they said most likely. So they gave him ativan and dropped the tube. It started sucking out all kinds of sick crap, and I mean crap literally. I asked how long they thought it would talke to get him relief and she figured that by morning it would be better. Well, by the morning it was not better even after taking over 20oz of crap out. The Onc on call was not ours, but told us he had an ileus and stopped all drugs which slowed the gut. So bye bye to his pain relief. He got tylenol, which did NOTHING. He was miserable. They ordered TPN which came on Sunday, the Sunday after Mother's Day. He had starved himself the entire week before. We were glad to see him get something to eat at that point. Too little too late. He was on TPN for about two months after that. He had stopped talking other than an occasional word under diress, or to cry. Usually "Momma" or he just would cry. Other than that, nothing. Monday rolled around and it was determined that Samuel had a major problem and needed to be in the PICU. He had too many antibiotics and needed blood products every day. He did not have enough IV lines to get it all in and now with TPN that runs 24/7 it was not enough. As our RN said, "he is too busy." So we moved up that afternoon after a CT scan showed he had several abdominal issues. They injected his growing abdomen and took out what looked like urine from his stomach. It was cultured and grew a bacteria called pseudomonus. A particularly bad one according to the Infectious Disease Doc. He was on 5 different antibiotics by then and we were still left with inadequate pain relief. Of course, by then, I found out that I was not going to be able to stay in the ICU with him at night. I cried all night. I had never left him before and now that he was in such pain and only spoke one word, "Momma" I could not even be there. It was all too much.
I am going to stop there because it is really late and the story only gets worse from there as we all know. I will finish it up as time goes on. Our updates from last year are scattered because we did not have access to our computer and then my site software crashed. It is all in my mind like yesterday I will write it out for Samuel to read and marvel at what a miracle he is. But tonight, I just sit and wonder about all the chemo, the steroids, and if any of this would have been different had they been stopped. All the mistakes, all the bad info that we believed at the time. Thinking about today last year being the beginning, I just want to go back and yell STOP as loud as I can to see if anyone can hear me. Would it make a difference? Guess it makes no difference now. It is just awful to think about. I am so glad we did not start the poison today.
Please keep us in your prayers as the next months will not be easy. Even with an end in sight, we all know, it could jsut be another beginning to something else. Hopefully a good something, but in thinking of the next month, with poison on board, you just never know what you will get. Please pray for Samuel, for him to stay strong. He has a touch of a cold today and has had one for the last few days. Kaysha brought it home once again and he actually got it. Another good reason to have not started today. Please pray for him to get better soon. Please pray that God lighten my personal load and show others around me how they can help more. Much love and thanks for your continued support.
Update 4/30/05
It has been such a busy weel and yet I feel like we got nothing done. While we were on our trip, the Onc Clinic called to give me the time of the conference and I had to call them back to tell them it wasn't going to work. I really love that they just call and say show up on such and such day at such and such time....this particular time was 9am....I wonder what other people who actually work outside the home do about this. It annoys me no end and the person calling is "new" to us and I think may have finally figured out it is just better to call as ask about times, then to just set them and then have to change them three times. . It ended up being put off until May 6th but I knew somehow that was going to get changed. I even tried to make it a phone consult because of the time factor but that did not work. Supposedly our Onc was booked solid all week. Interestingly enough, once he found out we were not coming in for another ten days, he suddenly had Thursday open and we could "pick" our time. Course that was Kaysha's SAT day so we had to juggle kids and pick up drop offs then. I pretty much dropped everything to get ready for the meeting since as it ended up, I found out Tuesday about the meeting Thursday. I always did my best research papers in college the night before in a single draft so it was really not unusual to be scrambling at the last minute. Maybe the last few days are just the anticlimaxx and the rest I needed, I don't know.
Thursday was a wash for getting anything done here. Both yesterday and today, the family seems to be high needs and I have felt a bit poorly due to the return of af. YUCK! It has been awhile. We are kind of scrambling trying to figure out if the timing of starting intense treatment Wed is going to work for us. Looking at my pile of orders and our finances, there is no possible way we can make that date work. I am sure our Onc will be less them impressed that we continue to put him off but I will never get done by then given the last few days being a wash work wise Most likely I will not be able to work much the weeks we drive up either. . I will never get done with orders in four days. Tha gas use for the four day in a row trips will be ridiculous not to mention food and time wasted to drive up there for a ten minute visit. We were not expecting to start this particular phase now, I need to get some other things figured out. This is one of those times when staying at the Ronald McD house would be great, but of course, we are only 50 mapquest miles away from there. Doesn't matter that we are a 1.5+ hour commute. Oh, well, I am sure God has it all figured out. I certainly don't and feel the stress. Seems best to put the whole thing off until the following week at this point so I can officially tie up loose ends and have a plan of attack for the rest of the stuff. I am sure I won't feel so stressed when my body feels better. or I get something accomplished..hopefully tomorrow. This is why I don't promise anyone anything, or commit to much, because the days are unpredictable here.
Samuel has been doing great. Playing like crazy. I had he and Anna on a similar nap schedule but the last two days they have been staggered again leaving me no time for myself. Today I managed to get my hair cut finally! Seems like I have waited forever to get in with my fav hairdresser who again would not charge me for svc. She is asesome, but I feel bad. She did Kaysha free too. I swear I only see her twice a year and the rest of the time I cut my hair myself and Kaysha's. But the last times I was in the hospital for any amount of time, the first thing that I noticed was that I had not had my hair cut recently and it was really annoying. So at least that is done. She invited me to go hiking with them Monday morn, early..I agreed, but may renig on that since I am so pleasant in the morning...NOT.
Today, last year, Samuel had his port placed. That was the first of many horrible experiences we had at our former hospital. Horrible, meaning poor planning on their part, Samuel miserable, starving and traumatized. Mark even said that that would probably be the worst thing we ever went through, but it was only the beginning. I am not sure how he can keep it together when I totally lose it. I had to hand Samuel off to strangers not once but twice that day, and he was screaming and I was sobbing. Mark just hugged me and took me away. Getting the port placed was the simgle best thing we have done in the long run, but we sure got a glimpse of the future that day. It was a particularly hard day because the reality of what was going on set in. We were having a catheter placed so the poisoning could begin. Our son had cancer. Our son might die. The road looked really long at that point. I am so glad to be here now, home, with my baby in his bed sleeping, happy, healthy and with family. This journal has now been kept for a year now, not just by me, but also by Kristina who kept the list informed when we had no access to a computer. I am so thankful to Sara for sending us the laptop. But I am also thankful to Kristina for taking the time to write it all out, in her own special way, which always made me laugh, at least at something, no matter how small. She knew me well enough then to know what to write to make me smile. And the funny thing is that while we had been online friends since the beginning of Mom and Me in 2002, we did not really "know" each other that well at that point. In the last 365 days, we have probably talked on the phone at least 250 of them. That is a lot! She has spent a lot of time advising me, helping me understand the medical terms, and gave me countless advice and questions to ask which probably saved Samuel's life and definitely made his life easier.
Someone mentioned to me that in looking at the start of our journal there was not a lot of updating done so I took the time today to go back and add Kristina's updates to the archive. I reread that first page today, along with the new entries and foudn there were some things I actually forgot. So I am glad she remembered. She has always been a rock, a stronghold and very rarely emotional during my turmoil. If she was, she would hang up and call me when she was composed. But there were the rare times when we both just sobbed and one in particular was when Samuel's ventricles filled up with fluid and we were told he had a stroke. Then were told he had to have relapsed in the CNS. I have always appreciated her being a rock, but the few times when we were able to experience the same emotion will always be special. This is a person I have never met IRL. A person who has never met Samuel, crying with me, bearing the burden of the grief. Whose heart would that NOT touch. her entries to this journal are very special to me as is her friendship. Now it seems we have been friends since childhood. Kristina, thank you for taking the time to be a friend not just me but to everyone last year. I look forward to a lot more joyful calls this year! Especially come the 15th...and YKWIM...ROFL!
Just rambling tonight trying to navigate the next mountain. I just need to go to bed and wake up ready to go. It will be nice when we can just plan to be home for awhile again. Maybe in July. Much love to you all!
