Update 11/3/04
As always, it is nice to be home. I was so thankful that we were all in our own beds last night. Thanks for your continued prayers.
The short story is that things went very well on Monday/Tuesday. Samuels counts looked great on Monday which made me happy as we go back to chemo. His WBC was 9.2, platelets were 700K, HCT 37.5, Hemoglobin was 13.5. His ANC was 5700. All liver function tests were normal which is very good news. Our Onc is not even sure how chemo will affect his counts because his marrow is in such good shape. We got some really good news while there which was a surprose to us all. Samuel had his CT scan done on his head to check the ventricles and the hydrocephalus status. We did not get it done at the six week mark of the VA shunt being placed. It was read and marked NORMAL! No enlarged, not smaller than the last, not bigger, but NORMAL. We have been told over and over that his bentricles will never be normal after being as big as they were but they are NORMAL! Okay, I am a little excited. This does not mean that the shunt can go away, however, it simply means that it is working. Shunts are usually in for life as there is no way of knowing if they are no longer needed without externalizing them and letting the CSF drip into a bag as Samuel's did for almost three weeks. But the CT is good news and explains Samuel's complete recovery from the hydrocephalus. Our Onc says he sees Dr. Avellino weekly in the halls and gives him the thumbs up about Samuel's shunt still working. We are going on two months! Another good thing was that Samuel now weighs 15.3kg or 33.5 pounds! That is quite an accomplishment fur us. Back in August/September he had dropped to 13.8kg or about 29 pounds so he has gained well in the last months.
None of us were looking forward to Monday. On the drive in, we talked about all the events of the past chemo. Mark commented that we had our share of complications and several other people's as well. Hopefully that will be all the suffering Samuel will endure. We went over all the positive things that we did not have going for us at MB. We went over the plan again with the Onc. Labs will be drawn again next Monday because that is when Samuel's counts would be expected to drop way down and need transfusions. We shall see. I am hopeful and praying that while they may fall, the marrow will just keep cranking good cells out and covering the poisoned ones. Samuel went in for his spinal tap and he apparently remembered the room because he started crying. That always makes me sad too. But the people were really good about remembering him and what toys he likes so he was smiling quickly. One anesthesiologist remembered him and commented on how much he talks and how easy he was to understand, etc. I didn't remember that anesthesiologist though. He gave Samuel his proprfol and he seemed to not be as out of it as usual to me. His eyes rolled up into his head but they did not close. That made me wonder if he was really out or not. We went out to wait and within ten minutes they came to tell us he was done and up. Usually he sleeps awhile. We came in to find him naming all his body parts with the Anesthesiologtist. The man thanked us for letting him work with our boy. It is always nice when someone tells you it was their pleasure to help your child. I still hate the proceedure though. It will be the last tap for two months. Good news there as well.
Samuel woke up in good spirits and we went down to the yucky cafeteria to eat. He was pretty happy. He was admitted to the Onc Unit at around 2pm but not before we went to visit our friends on the Surgical Unit where we have spent so much time. We were happy to see that Julie was there and even more pleasantly surprised that she has been keeping up on Samuel and knew we were going to be there that day. It is nice when the people we care for so much also care for us outside the job. Mark was saying as we were going to that side of the hospital that it would be like old home week if we were staying on that floor. Julie was very thrilled to see Samuel walking, talking and playing in the halls. He looked into one of the many of his "old rooms" and asked to watch a show. Julie was happy that he actually liked her this visit. I know a few nurses on this floor who gave report to the next nurse and commented that "by the way, Samuel hates us." Samuel is getting much more personable with people now. It is nice to see that loving side of him again. He never knew a stranger before getting so sick. We will be back at Children's next Monday through Thursday so we will try to swing back through the G3 unit again....hint hint...Julie. (let us know when you are there.) We love you!
We were admitted into a three bed room on the Onc side. We were thankfully the only ones there. The first think I noticed was no window in the room. I felt claustrophobic in there and was glad to be not staying longer than the night. Of course we did our usual 20 questions about when we would get out of there. How early can we be released? Our paperwork was filled out for release the day we arrived and basically just had to be gone over by the RN in the morning and signed. We got a really nice nurse, Sandy, whom Samuel instantly loved for some reason. Taking his vitals was NO problem. I fed Anna one last time and Mark left for home around 3:00pm. Samuel was hooked up to IV fluids which were pushed for several hours before Cyclophosphamide. It was supposed to be going by 5pm but did not happen until 7pm due to it not being ready. I could have put it off all night. He got his antinausea first and then the chemo ran in over 30 minutes. He had not had a nap all day and became more fussy then. My adrenaline was already pumping in anticipation of the other shoe dropping. But he got happy again and did fine. After the first one, they came back with the Cytarabine and again, no real difference. After that, they gave him Lasix to make him pee it all out and he peed well into the night. I pumped him 8oz of my milk before he went to bed. He ended up being up until nearly 11pm. I was glad to not have Anna because being with him in the hospital this time was like an entirely different kid. He could actually sit in his bed, rather than lie pitifully. So we colored LOTS of pictures. I packed mostly toys and there were not enough. We watched some shows but he really wanted to get up and play. Some boy kept coming around the hallways with a push popper and Samuel was ticked because he wanted it. I finally shut the door so he wouldn't see it. I ran into our favorite transporter, Mangesh in the hall and told him to come visit us and see Samuel. Samuel was not walking last time we say Mangesh. As it happened, he came in to get us for the CT. For the first time, Samuel WALKED to CT. He was attached to his IV pole, but he walked. Mangesh helped him puch the buttons for the doors and elevators and talked to him the whole way. He was thrilled and amazed at the difference. When we got to CT, they were not ready for him yet and we had to wait which thoroughly ticked Samuel off and he threw one big fit in the hall. Loud enough that Mangesh decided we should walk some more. We got about halfway down the hall and Mangesh sharted laughing and asked Samuel what happened to his diaper. "You can't be flashing everybody like that!" I looked down and his diaper was around his knees and he never even noticed. We laughed so hard, it was so funny. At that point, which was before chemo, I was feeling relaxed about the whole thing, like I was at home, in a way. We had one of our usual CT ladies who could not believe Samuel walking and talking either. He threw another big fit on the CT table that was bad enough for all to agree that he needed to be tied down to get the job done. I told her that he probably always felt this way, but for months could not say it or act it out.
Samuel did not allow me to do much but entertain him while we were there. I think I got a hundred hugs and kisses. All the nurses commented on how loving he was. He was afraid I might leave him though because every time I would get up and walk away, he would say "momma, momma, sit, sit sit." and point to the chair. So I did not leave the room until he went to bed which was late. I finally told him enough was enough, go to bed. He was like the Energizer Bunny. I finally got linens for the lovely bed chair at about 11pm. I pulled it out and boy did it remind me of MB. Especially in the first weeks when the chair was right next to the bed. You pulled it out and you could not walk by the bed, you had to crawl in the chair. So I could just reach up and touch Samuel without getting up and walking across the room. I liked that. I also remembered putting Anna in the chair above my head at night for weeks at MB when she was still small enough to fit. Seemed strange without her, but I could have never handled both...and had any sanity. Just watching chemo makes you want to lose what sanity you have. These are the times I wish Mark was there. He is calm, cool and collected, I am the one who wants to freak out. I called him to chat a little after the first one was started. Not the same as in person. Anna was doing fine and had went to bed at 8pm. She drank a whole bottle of my milk with no problems. She slept fine until 3am and then was a pain until morning. But they made it.
Our night nurse came in to say hi about 11:20pm. I was in bed, but not sleeping. I was listening and accounting for every breath Samuel took. Analyzing every cough, sniff, or lack of a sound. She remembered his name from way back in July when we were on the surgical unit and they got his chemo ready there and then brought it over. I asked who the charge nurse was but it was not one I knew. She came in to do vitals at 12am and 4am. I kind of heard her come in at midnight but did not really come to until she (I think) scared the crap out of Samuel. He sat right up in his bed and cried unconsolably for a few minutes. I don't know if she uncovered him or what. But he was pissed. She mentioned she wanted to get a BP but I told her that after that, she was not going to get one. His BP's were normal all night! The apple cider vinegar works magic! And his temp was on the cool side as well which is now his norm but made them all look twice. The Onc told us that one of the chemos can cause flu like symptons including fever. He ways this like it is NO big deal. Well, he did not watch his child have constant fevers for MONTHS! It is a big deal and something I don't want to experience again...ever. Samuel is still doing well tonight.
We went back to bed after midnight vitals without issue and I woke again at 3:40am, probably in anticipation of her coming back. She had asked earlier about changing Samuel's diapers, etc. I told her that I will do it all and she commented that most parents are not used to getting up several times a night to do diapers when they push fluids. I laughed and told her of the many poop explosions and incidents with the food pump beeping. If I ever sleep through the night again, something will be wrong, not right. Interestingly enough, no one in that unti had seen an ileostomy and wanted to be shre that WE would care for it. Go figure. Here our Onc tells us that Samuel's problems are not unique. I will be sure to ask him about the fact that none of the RN's on that unit know what it is. One asked if that is where he poops...and does he still pee?
Samuel's 4am vitals went fine, he never woke up and I changed his diaper too. I chatted with the nurse for awhile because I was UP. I don't know how long I was up after she left, but it was awhile. Thinking, worrying, remembering MB thanks to the crappy bed chair. One RN at MB told me that going from there to Children's would be a lateral move. Well, it was anything but. After being admitted for chemo, we were immediately assigned a Nurse Practicioner who stayed on our case the entire night and a new one in the morning. That was different. And they actually check name tags and chemo drugs and doses with YOU the parent before giving them. Just felt more orgonized and definitely like we were in better hands. While the things that happened at MB are now water under the bridge, I think I will be haunted long after this ordeal ends. I read a journal page where the mom commented that the longer you are in the hosptial, the more they find wrong with you. I believe that the longer you are there, the more things go wrong for sure. But how much is human error? We are already a statistic. We know the human error factor. At MB, one of Samuel's transfusions was thought to have been contaminated with bacteria....of course we did not find this out until after we were in the PICU...with a bacteria. Stupid things..lots of human error. I still feel today like I felt then, if we can just stay out of the hospital, we will fare well. I may have a false sense of security by being home, but I am in control here. There, it is so easy for things to get out of hand. Everyone will agree, Samuel has suffered enough. Even the new nurses and doctors we met Monday and Tuesday could not believe the amount of things we have dealt with.
Samuel woke me up at 7:30am. I would not have know it was morning...no window. I called Mark to be sure he hit the road early since they were planning on us getting out by 9am. I pumped Samuel 20 ounces of my milk after talking to Mark. This filled up his food bag and was my accomplishment for the day.....very cool! Mark arrived by 9:30 and of course we had to wait on staff to get out. Samuel was overjoyed to see his family come. At one point in the morning he cried out for A.D. He missed Anna. I knew he would. Everyone played happily. He got his second dose of Cytarabine before we left.
We were all tired...all day. I got the babies to bed and went to bed too. It was so nice to be back in my bed. It is always nice to drive over the bridge and leave the University District because I know we are going home. Pretty much got nothing done yesterday. Just rested. I did unpack though, that is a first. I check Samuel every time I go near him for a fever. He has none. He is doing great. I am thankful for the NG tube. I can give him my milk, or good food and he is hydrated and getting the toxins out. I pray this continues. He got his third dose of Cytarabine today. Tomorrow is the last for this week. Then next week, four more over four days.
Thanks so much to those who prayed us through on Monday and Tuesday and contineu to do so. I could feel your prayers the entire day. God provided lots of comic relief as well as nice people to help us get through. Seeing Samuel a whole different child made it easier on us. His body is strong and his will to live is as well. Please keep him covered in prayer as the toxicity of the drugs is cumulative. He did great in the first week and a half of the first round of chemo and then we were bombarded with crap. That is my biggest fear. When Samuel was so sick and stopped talking, I used to pray over him at night, out loud. I would talk to him and tell him that Jesus was with him and to think in his head the he was "healed in the name of Jesus." I talked to him about that a few days before going back to chemo. I told him he was healed in the name of Jesus and he got so happy and gave me the biggest hug. It was like he remembered it all. Every surgery he went to, I always told him that Jesus was with him. He says "yeah momma, Jesus." he knows. This journey has taught me so much about the human mind. While he may have blocked out the bad, he remembers everything I did, Mark did, and that people who were trying to help him did. Tonight, I found the old Burts Bees lotion that someone sent us way back when Samuel was in the MB ICU. I put some on and smelled it. It totally reminded me of his skin peeling off on his hand and feet and the countless hours we massaged them. I thought of him picking layer after layer of skin off his lip because that was all he could do. He does not even think of touching his lips now. I asked Mark to smell the lotion and see if he knew what it was. He thought it was familliar and when I told him what it was, he remembered the same thing as I did. It also reminds me of the parent apartments at MB and having to leave Samuel every night he was in ICU. I am so thankful I could stay with him at Childrens. He needs me and I need him. We had some very quality time alone together. And I am more thankful I don't have to leave home to see him.
Just need to get through tomorrow and then hope for a restful weekend. We came home early enough today to get some school stuff done. Need to do some catching up over the weekend. I used to think I was busy but now I know what busy really is.
Our thanks to you friends, both near and dear and unknown who pray us through. With love!
Update 11/2/04
We are home and it is finally Tuesday. All went well and we thank you for your notes and prayers. Please keep Samuel in your prayers as the effects of chemo are cumulative. We did not start seeing toxicity from his initial treatment until day 13. More later, hopefully after a nap for me since we got very little sleep last night.
Update 11/1/04am
Standing on the edge of the cliff looking down into the deep murky sea below, I don't know what is down there, but know I have to go. I feel the adrenaline rush and the moment where time seems to stop as I take the biggest breath I can, hold it, and dive in not knowing when I will be able to get another breath of fresh air. Here we go again.
Update 10/31/04
As I was making Samuel's food for the next two days, I could hear my 8th grade Spanish teacher asking, "Are you ready for this?" She always asked this prior to a test she gave. No one ever volunteered a yes, perhaps just a sarcastic giggle or a groan. I was always ready, always prepared, no groans from me then. Now, I groan. I growl. I feel sick, sad and mad. I feel sorry because Samuel does not even know what is about to come. I can in no way prepare him. It seems like a cruel sick joke. I cannot prepare his mind, I can only prepare his body as best I can. So he got a very nice meal via NG tonight. He gets food until 4:30am and then clears until 8:30am. Then is cannot have anything until after his spainal tap which will probably be around 1-1:30pm. Supposedly they are admiting him immediately after the tap. Tomorrow he will get Methotrexate by spinal tap, which he has already had several times. He will take Mercaptopurine by mouth which he has been for the last few months. He will get Cyclophosphamide IV and Cytarabine IV. We are inpatient for the Cyclophosphamide so they can push extra fluids but don't think I won't be doing the same. The Cytarabine will be IV for four days. Check out the Chemo Drugs here....
Reading through those would make anyone sick, much less thinking of giving them to your child. Bottom line, I am NOT ready. Mentally anyway.
I felt depressed today so did some "work" stuff to put my emotions into product. I always thought I did the best work when I was emotionally wrought. Passed the time, occupied my mind. Carrie was able to come visit today which was nice. The kids played with her boy while we visited. She was able to see Samuel running and playing. He would not give her a hug or kiss yet but he did blow her some kisses. He doesn't get too far away from me.
Samuel's food is made, I am bringing food for us both to eat since their food sucks. I have pumped Anna 24 ounces of milk and will pump another 8 or so before going to bed for the trip home with Dad. This will be her first time away from me, and me away from her. And Samuel away from her too now that he can remember and talk. He will be sad. But it will be so much easier on us for me to give him one on one attention. Anna still sleeps horribly and getting up four times a night with her is not something I want to do. She is near walking! I have not packed my suitcase yet....really don't want to. So I will spare that misery for tomorrow.
The kids went to Halloween festivities at the mall as planned. However, it was packed fuller than as if it was Christmas so it was not very fun for us. They did not mind. Thanks to whomever left the goodies on the porch! We discovered we had a flat tire at the mall and will need to get it fixed tomorrow. We are dropping Kaysha and Daniel off at Mark's Mom and Dad's since we don't know how long we will have to wait to get a room. So it will be a busy morning. We will probably be late getting there but they have all day to get us in and I am in NO rush. Did I mention I don't want to go? Still wishing it was Tuesday.
Will update when possible....
Please keep us in your prayers today. No weapon formed against us shall prosper. Enjoy the day for us today. Thank you for your love and prayers! With love and hugs from us here........
Update 10/29/04
Our visit to the ND went well yesterday. He told me that because Samuel's counts have been so stable the last few months, he feels Samuel will do very well for the remainder of treatment. He said that though the pendelum may swing back and forth, that the valleys and mountains should not be as difficult as the past. Mark and I talked about him coming in with counts that were almost death, then adding chemo to that, then taking a protocol and making alterations to it was fated for disaster. I remember asking our former Onc if the cure was worse than the disease and him telling me that it wasn't. Well, I have news for you, it wasn't the leukemia that caused all the pitfall of disasters, it was the chemo/poison and low counts that did. The ND invited me to go to any meetings that he goes to even if the public are not invited, I could go anyway. He is going to NY to do a conference on integrating Mainstream and Natural Medicine and that sparked the conversation. Unfortunately, I don't live close enough and could not drive there even if I did. It was a nice thought anyway. We got some a lot of advice of when to use what and when to stop what which will help me to make his formula just right for the next two months. I did leave with hope that he will do well and while there may be a bump in the road or two, they won't be sinkholes like in the past.
Of course, it was raining yesterday so we did not do anything fun in Seattle. Samuel was ready for a nap by the time we were done at the ND's and by the time we got home I was a major grouch. On all these trips, the kids sleep the whole way home and are ready to play when we arrive. Meanwhile I am pooped out when we get home and don't want to do anything. So we just had a lazy afternoon. In fact, I came home and changed into my pj's. But I think I got about five hours sleep that night interupted at 2 and then 3am.
Mark and I talked today about what a bittersweet milestone it is to be where we are. We really got everything we wanted as far as Samuel's recovery. He is walking, talking, playing, enjoying life and happy again. He is healthy enough to start treatment again and is 6 months older than when we began. His language has exploded in the last months and he communicates very well, especially when something hurts. He learns new words daily. He has regained his personality and love for most people who don't look like medical staff anyway. He has taken all his new body parts in stride. BTW, did I mention that he is now running? His shunt is working, he is actually trying to eat more new foods daily and drinking lots of water as well. His marrow is really healthy as is his body and is is in a lot better place number wise than most kids just coming out of induction. The bittersweet part is that we are on the threshhold of starting the very treatment that caused all the problems in the first place and it is scary. The nightmare from earlier this year haunts me and probably will until we get him to long term maintenance. I feel hopeful that things will be different this time and as Mark says, "he could just breeze through it." Certainly he has paid his dues with complications. But it is like stage fright, you feel horrible and nervous and anxious until you get up there and do it. Hopefully my sense of things going right and things going wrong will be on target. It was last time, I just didn't listen to it and rather trusted the doctors. Monday looms and draws nearer. I resent Monday. I wish it was Tuesday already. We would be coming home, not thinking of packing to go in. Tuesday I will know how it all went, not wonder if some unheard of thing will happen again.
Enough dwelling on that for now.
The highlight of my week was the raffle done for a pouch. The winner lived about 20 minutes away from us so we were able to deliver the pouch personally. That was awesome and very very fun. I get notes all the time from people who get their pouch and love it, love the color, etc. But seeing someone get it in person was awesome in it's own respect. I told Mark it reminded me of when I used to do Home Interiors....we would take a day and deliver all the merchandise and people would think of you as Santa as you brought it in. They were loving the products and thankful to you for bringing them in almost as if you made them yourself. The big difference today was that I did make it myself and the pride in that is a wonderful feeling. It is nice to make something that people truly enjoy using and looking at. So, that was fun and the pouch went to a wonderful lady who looked smashing in it. It is the little joys that get you through the rough spots, right? I am thankful we were able to do some of the things we love for the last few weeks.
We also went to Mary Bridge today to visit some of the people we missed on our last run through. I took some pictures which are above. Everyone was thrilled to see Samuel. He was pretty happy too until we went up to the PICU. Then he was sad. We missed seeing Karla and Patti on our last jaunt through so it was great to see them if even for a few minutes. We also saw Anna who we missed the last time as well. Samuel seemed to have no recollection of anyone. I was at least able to thank and hug the people who helped us so much while we were there. As we were driving up, Mark commented that he say my room, then rooms. Ugh, a little sick feeling. I asked him if any of the sills were as trashed as mine used to be. No, he says. Well, hopefully that means that no one has been there that long. Going in and upstairs did not bother me. I am sure if I went into any of our "old rooms" I would have felt sick but I was mostly thankful that Samuel was with us. Glad we don't have to leave the house to see our child. Our stay was shortened by a blow out of the "air bag." So we did not get to see everyone we wanted to or get as many pics as I would have liked since everyone was supposedly working while we were visiting. Oh, well, hopefully the check out the site once in awhile and if so, sign the guestbook so I can send you a personal e-mail. We did not run into our former Onc, probably a good thing...........
The kids did their pumpkins today. Samuel has been hugging and kissing his since he got it. He is feeling great and a happy happy man. I put him to bed tonight and dreaded Monday night when I will be putting him to bed in the hospital with poison running into his veins. Yep, I really wish it was Tuesday and we were back HOME.
Tomorrow is a day for cleaning up and gearing up. Shaye is here tonight to play but will be leaving early in the morning. I want the house in order before I leave. No one wants to clean when we go back and forth. Sounds thrilling doesn't it? Mark says all we do is clean...well, duh? All we do is make messes!! I think we will take the kids to the mall for Halloween so Samuel can see lots of kids dressed up and I can attempt to shop. I don't think I have seen a mall since last Christmas. So much for all the plans I had to get so many things done.
Well, my brain is scattered, time for bed. Please keep us in prayer and know that we love you and appreciate your support and friendship. Thank you for loving Samuel.
Update 10/27/04
Just wanted to share some words from the wise. I don't want these lost in my e-mail!
"Samuel is looking sooooo great in the pictures!
Jen, just think - you are starting from a much better place than the first
round of chemo. Samuel was very, very sick then. And what the onc did,
well, it made a powerful protocal an unbearable one. Samuel is so strong!!!
He came through all of that - it would have felled any of us! And he will
come through again - but in much better shape this time. Your onc will not
take such risks as the last one did - he wouldn't dare (and not only that,
but it wouldn't make sense for him to do so). And Samuel is in a much
better hospital - they seem to monitor reactions much more closely. And you
and I both know that is key in a treatment such as this.
That dream you had is your greatest fear surfacing. You won't let it come
out when you are awake, so it has to when you are alseep. You have to
acknowledge it in order to be able to deal with it and let it go. It is
every mother's worst nightmare, and, on some level, I think it is a fear
buried deep inside every mother's heart. It seems that when you have a
child, when you love someone, your heart leaves the protection of your
ribcage, and sits out on your chest, exposed and unprotected. It is the
scariest thing ever. That's what it felt like when Tallulah was born.
Jen, Samuel will do well - I feel it deep in my bones and every fibre of my
being.
Let me know your hospital coordinates on Monday."
Monika
Monika is ALWAYS wise, and a ray of hope to me constantly. Don't know what I would do without her. Thank you for being my friend and hangin in there with us through everything.
"Samuel looked so cute and rosey cheeked. his cheeks looked fat, too. so nice to see non steroid-induced plumpness on that boy! i was trying to imagine the sick feeling in the pit of your stomach and trying to remember times when i had that feeling. the closest thing i can come up with was right around when the girls were born and for their first two years before i moved home from kansas city. quite a story. i'll share it with you sometime while we are bored at Pooper's high-school football practice. anyway... even my awful feelings at that time weren't because my child might die. not that i think he is, but you were sharing about your dream, etc. i can't even fathom that feeling. you always say you want to grab him and run away. that's how i would feel too. you may actually puke when the time comes. i'm really making you feel better, aren't i. i should try to be more of a rah rah friend, huh. no, i'm the friend that says... "hey, you might just feel so crappy when they start the treatment that you actually DO puke" what is helpful about that? what is my problem? well, what I do is think and feel and try to put myself in your heart and your body so i can ATTEMPT to understand and be a support to you. in a twisted sort of way, that's how i love on you. hmmm... sometimes i think i just shouldn't write to you. but it seems totally fake and STUPID to talk about regular crap and blah blah blah and stupid crap blah blah blah when something potentially REALLY bad could be happening. This whole pot of unknown soup crap is driving me crazy. he could be just fine or... not. here i go helping you again. i'm going to shut up and go now that i have been such a wonderful supportive friend to you (extreme sarcasm here).
p.s. don't waste any of your happy time writing me back a supportive letter. i know that is what your fingers are itching to do. i know you love me and that somehow the way i am helps you in some weird way. now go read a rah rah letter from another friend to get pumped back up.
I love you and I am thinking about you and praying for you and trying to take away some of the yucky."
Kristina
Kristina SHOULD be my sister, we think a lot alike. There is nothing I like more than blunt honesty because she can write what I think and still make me laugh. Thank you for being my friend. Thank you for making me laugh and knowing my thoughts.
"Hi Jen! I have been so happy reading your updates lately. Praise God for His mercies that are new every morning! Samuel and you seem to be doing so great. We will be praying for you as we always do for the LONG haul ahead, if the Lord be not come. Wouldn't that be wonderful! No more sickness, crying, or chemo.... Ahhhhh! "
Wendy M.
Wendy took my thoughts this past week and wrote them down for me. If only the rapture happened. No more tears, no more sorrow, no more chemo, no more death, suffering. Thank you, Wendy!
As we head into the holiday weekend, please pray for the children who won't be having a Halloween because they are too sick, or stuck in a small hospital bed peering out the window at others enjoying the festivities. I have been on that side of the glass, looking down at life going on around me and wondering if we would ever get out there again. Weekends are usually awful times with nothing really going on at the hospitals as well so please pray for these children.
We are SO thankful to be home tonight. We are so thankful for you friends who hand in there with us as we continue along. Thanks to the many many prayer warriors we have. We love you.
Samuel is the light of my life, my Twinkling Star. He unites us all in ways we could have never imagined. He is love, he is forgiveness, he is hope, he is strong, he is a fighter, he is courageous and he has already defeated the odds. He is a child of God, he is a mighty Warrior.
Update 10/26/04
Things are going very well but wow how time flies. Less than a week of down time left and the rest of the week will be a busy one.
We had Kaysha's birthday party over the weekend and I have added some pics above. Samuel wanted to go to the party until he walked out and saw how many people were there. It was only family but apparently too many. He ended up playing in his room with cousin Shaye for awhile until he got used to the people here and came out to visit. He even ate cake! In fact, over the last few days he has started to eat three meals a day, small, but something. This is great. We can really tell that the effects of the last chemos have worn off for the most part. He also started really walking well today. He was walking around slowly with a slight limp but suddenly he is moving really well. And Anna is doing her best to keep up. Today I caught her half way up the stairs.
Everyone has spent some time the last few days doing what they love. Mark finished up his gun building for the most part. I have made a few pouches with help from Samuel who usually finds me dying them in the bathtub and crawls up on my back like I am his personal horsey and yells out the name of whatever color I am currently doing. Kaysha got a new homeschool art video which is giving her new ideas for drawing, etc. So she wants to do that everyday. She gets that talent from her Dad. I cannot draw to save me life. Daniel tries but he gets his drawing talent from me I am afriad and he gets frustrated easily. He has spent time playing with Anna and Samuel as well as playing some games he likes, working very hard on his math and writing and doing extremely well. Samuel does whatever he wants but mostly he wants to play, or show you he is walking and ask you to walk with him. He likes to go places again and is getting a lot more friendly with people he meets. Anna is into everything, pulling up and walking. We wondered if she would walk before Samuel but I guess he beat her to it. She is not far behind and will definitely be our earliest walker. Between all this, I am quite busy. I gues trying to keep my mind occupied so as not to dwell on next week so much. Not really denial but sort of a laa laa land. Life here has been good and if we could just forget about chemo, it would be great. It is nice with everyone home, we can switch gears at the drop of a hat because we don't have to be anywhere at any set time and don't have to do more than we want to. I wanted to work a little and get a little cash saved up for next month when we will be driving to Seattle 4-5 days a week and eating out several meals a day with six of us. That will eat up the cash and while we have a little set aside in savings, I really want to keep that for an emergency at this point and do what we can to get by without dipping into it. I feel like we are walking to the edge of a cliff ready to jump off into unknown territory. We all know it is coming, can't stop it so trying to pray for the best and prepare for the worst.
People ask what we need. Our main need is prayer. Please keep us in your prayers and especailly Samuel. Pray that he will do well with the remainder of treatment and that our doctors will know what to do for him should something come up. Pray that we never spend more than the required time inpatient. Pray for my children as they are dragged back and forth daily. Samuel loves them so much and it is important that they be there for him. He will always remember that we were a family supporting him. My children are being forced to grow up fast, pray that they can still have fun but be helpful to us as well. Pray specially for us as we start on Monday, November 1st. Samuel will get a lot of chemos all on one day and then for several days thereafter. These drugs are supposed to drop his counts to zero and leave him at risk for infections and complications. Pray God's wisdom over Mark and I to know what to do. Pray for comfort for us all as we prepare to go through this. We thank you for all your continued prayers, notes, love and support. I don't know why but I dreamed Samuel died last night. Something happened at the hospital and he died without me present. It was the most horrible dream ever. We cannot imagine life without him. We don't want to imagine life without him. I found a link from another site written by those who cam before us about how friends can help. It was very well written and I included the link above. If you know someone going through this, it is a great read. Probably applies to any tragic situation though. What can friends do?
For the rest of the week we plan to have a little fun. Tomorrow, just hanging around, probably stock up on groceries and easy to make dinner ideas since no one will want to cook anything that takes more than 10-15 minutes when we get home from Seattle. School projects, etc for the kids. Mabye hit the pumpkin patch too and carve pumpkins. Thursday we go to Seattle to confer with the ND regarding the protocol and get adjunct therapies for the new drugs that will be given. This place made me feel hopeful last time so hopefully the same will hold true. If the weather is good, we will do something in Seattle. I am still puching for the ferry boat ride but we shall see. The Seattle Science Center if it is raining. Friday we are going to visit Karla at Mary Bridge and hopefully some of the other lovely staff whom we missed at our last visit. Karla last saw Samuel when he looked really bad. She won't even believe it. She will always have a special place in my heart so I can't wait to see her. i asked cousin Sheye to come spend the night on Friday and spend time with the kids because that will be the last time for awhile and everyone loves Shaye. Mark's Mom commented that you know how everyone loves Raymond? Well everyone loves Shaye. Samuel sure does. I wanted to get together with my friend Carrie too but they were sick last weekend and unable to make it to Kaysha's party. Hopefully a day will free up for her. Nothing really solid for Saturday. Probably rest from the previous two days and finish up loose ends biz wise. Sunday, Halloween festivities. The kids can't wait. We were too late to get Samuel a Quack Quack costume so he got a clown outift instead. He is a clown these day so it fits. I realized that daylight savings time ends on Saturday night so we get an extra hour to be home at least. Every minute counts. Pack up Sunday night for Monday's overnight hospital stay. I type that and feel sick. Do you ever wish you could just stop the clock when you are in a happy time? I wish we could just stop time from ticking away from us.
Well, it is late, and I still have some things to do so I will close this with love and hugs to you all.
Update 10/22/04
Just wanted to post some quick thank you's. Sorry these are not personal notes, my time is not my own, so much to do, so little time.....
Thanks to those who sent gifts and birthday wishes to Kaysha.
Thank you Kerri for your continued kindness to our family. Your gifts were awesome, well loved and the bubbles a big hit with Samuel. Kaysha loved the bead maker and especially the online card. Hugs and love to you and your. May God bless you.
Thanks to Keila for your gifts to Kaysha, she loves them and the Trixie books bring back memories for usre. Thank you for your kind note, your friendship and the offer to stay. We would love to, but cannot do it at this time. Hugs and love to you and your family expecially the new little one. Hope you are feeling great! God is blessing you.
Thanks to Amy S. for the kind note and offer to stay. Again, we would love to, but can't at this time. We WILL meet though, no doubt about that. I have always felt a special bond to you. Love and hugs to you and yours.
Special thanks to those who continue to write me and to whom I never answer. I want to, I just don't have the time. My special friends, Shelby P, Jen G. Lois B. Jami X. Michele M. Michele B. several other Michelle's who write me a lot. Your thoughts, prayers and friendship mean a lot. I regret that I cannot be a better friend to you too. Much love to you.
Thanks to Sandy D. Means more than you know. Hope you au!re enjoying a babymoon. I think of you often. Much love to you!
Thanks to those people here in WA who have shown us extra favor, kindness and who continue to support us in many ways. Special thanks to Mrs. Butterworth in Bonney Lake for your kindness when we come eat. We are overwhelmed with the kindness shown by the community. Thank you for making Samuel feel special.
Special thanks to Samuel's Angel, Sheree! You are a blessing to our family. Thank you for all your notes and love and prayers.
All our love! Hope to update later tonight, in my spare time between 2 and 3am, LOL!
Update 10/20/04
Happy Birthday to Kaysha!
Samuel is walking all over the place now! Kind of another good day/bad day for him.
Another busy day. I have been so swamped taking care of household things and children that I have not been able to thank people properly for their kindness. So I thought I would let Samuel say thanks to you himself. Check out the video at the top of the page. More videos here...
Update 10/19/04
The last few days have been up and down. For the last few nights, Samuel has woke up with a tummy ache that usually turned into puking. We think he might have had a blockage in his intestines from something he ate because he had a bit of diarhea (more than usual) for a few days. This cleared up nicely after a good vomiting session. Then a day of bliss for him (yesterday). Then this morning at about 4am he had another tummy ache that I was able to nip in the bud before it turned into puking. He just does not like puking anymore at all. Not that anyone does, but for awhile there, he never really seemed to mind it. Now he screams bloody murder. So I was up late the last few nights, or in the case of last night, I was up from about 4-5am. And he did not go to bed until Midnight last night because he took a late nap. Topping that off, I had a breast infection that started yesterday morning and is now finally going away that made me feel fluish all day. I am sure it does not help that no one sleeps here much. It is 10:30pm and I just now got everyone to bed. I should go to bed too but I need a few minutes to myself.
I finally unpacked all three of my suitcases today. These were the ones I had packed for that emergency trip to the hospital we were taking every few days. I decided that I don't need them as of now. I know I will be repacking them in less than two weeks. But it was nice to free up the space in my closet and most of Anna's clothes that were packed do not fit anymore or are for the wrong season. I found a lot of Samuel's blankets that he received as gifts and he was happy to be reunited with them. I ended up throwing away most of my clothing that was packed. Getting them out just reminded me too much of the hopelessness and despair of the spring/summer and all the suffering Samuel went through. Thinking of the many nights that things went wrong made me feel ill. I just hd to get rid of that in a symbolic way I suppose. Mark thought I should just pack them up for next season since a few were already hanging in the closet but I told him I cannot even stand to see them from a distance. I won't feel differently next year. I will probably hate them more. At any rate, I associate things and wearing the clothes I wore a lot of time for more than one day in a row does not interest me. I still associate certain songs to that time as well. I won't be throwing my radio out though. I just hate Tim Mcgraw even more now.
The time seems to be ticking away already. Kaysha and Daniel go to the eye doctor tomorrow. Kaysha was not impressed to be doing this on her birthday. She can have a fun day of shopping afterward. We went to Costco yesterday and Samuel and Anna got to ride together in the cart fot the first time ever. They were so cute together. If you can imagine an almost eight month old doting over her brother, then you can picture it. She was just glued to him. He would hug her and kiss her and tell her to look at things. He was so sweet to her and just thrilled to be riding next to her where he could touch her hair. He likes her hair almost as much as he likes mine.
Samuel's ostomy bag exploded in his bed today. When he got up, I knew we had problems the minute I walked into his room, let's just say, I could "smell". It has exploded several times in the middle of the night as well. Now that he can move well, he likes to sleep on his tummy again and it does not bode well for the bag. Trying to explain this to a 2.5 year old is not worthwhile either. So has had several nighttime baths in the last few days,either from exploding vomit or poop. Even my kids now have endless conversations about Samuel's poop, what it looks like, how much is in the bag, if the bag is still on, how bad it smells, what the consistency is, etc. We had to change that bag four times again today. Our life revolves around poop it seems. It will be so nice to get him hooked back up. Too bad it is still six months off. By then, he will think that the ostomy is normal and he will wonder where the "air bag" went.
The trip I wanted to take is not going to happen. After several long discussions we decided we may take a day trip to the beach, but we won't stay given Samuel's nights. No place will have enough towels, hot water, or bedding to handle us. And we thought of taking him out of his comfort zone right now not being a good thing either. It truly sucks because I wanted to get out of here for a little while so badly. But, it would not be fair to Samuel if he felt sick. Time seems to be running out anyway on doing a whole lot.
His first day of Consolidation is November first. The appointment is already set. We have to be there at 10:30am for labs and then a spinal tap. Then he will be admitted for the night for two more chemos. Then the next three days, another chemo on top of a daily oral. Please keep us in your prayers as I know you do. The thought of this still turns my stomach. I am glad he is getting a little break for now. I was talking to a lady on the phone today and told her we will be in Seattle four days a week for awhile and she said how far it was to travel and I reminded myself out loud that as long as we come back home at night, it will be hard, but okay. There is never a day I don't cherish being home. Dragging out the memories today only drives it home moreso. I cherish every hug and kiss that Samuel gives to me, as well as the whole family. He is my most loving child bar none. He gives the sweetest kisses, soft and four or five in one sitting. There was one morning early at Mary Bridge that I will never forget. He woke up for some reason and asked me for kisses. I gave him kisses and then he grabbed my face and gave me several kisses on the cheek. After that, his heartrate dropped to 50 where it remained the majority of the day and he stopped talking other than in duress. That was around the second week we were there. I have always looked back at that liek he was saying goodbye. That was mid May. He stopped speaking other than a few words when he was crying for three months. I thought of that for all that time as the last loving thing he really did. It was like he knew something bad was going to happen and he gave me something to hold on to. I am so thankful he is still alive today, talking, walking, happy, and most of all the loving chaild I have always known he was. When he goes in for chemo in November, Anna will go home with Mark rather than stay. That will be her first time away from me.
Samuel is coughing a lot suddenly so I will end this to check on him and go to bed. Thank you to those who check on us and pray! Thanks for the many guestbook entries as well as personal notes. With love!
Update 10/18/04am
We got the news from the clinic today....
Samuel's bone marrow and CNS are still in remission!
This was expected but still great news when you see it on paper.
Praise the Lord, He is faithful.
I have been given this scripture by the Lord over the last several days and I wanted to share....
Isaiah 54:17
No weapon that is formed against thee shall prosper; and every tongue that shall rise against thee in judgment thou shalt condemn. This is the heritage of the servants of the LORD, and their righteousness is of me, saith the LORD.
This is my new anthem, what I will meditate on daily until this is long over and Samuel is living his prosperous abundant life. Amen.
Enjoy the day today.
Update 10/15/04am
Please keep Samuel in special prayers today. He is feeling icky this morning. He is sick and throwing up and miserable. Apparently the last of the chemo caught up with us. And it was given a day early as well. This is the part I hate, where he has to be miserable for NO good reason.
Thank you to "Dawn's Friend" who sent Samuel the two rainy day ducks, Mommy and Baby. They came on a great day to cheer him up while he is stuck in bed. He loves them so much. Thank you for your kindness today!
Update 10/14/04
Wow, I am tired tonight. Another long day. We ended up getting out the door for Seattle a bit late this morning...did I mention I am NOT a morning person? I can easily stay up all night though and basically did between restlessness and Anna getting up several times. We dropped Kaysha and Daniel off at Mark's parents so we could have our meeting with a few less voices. We arrived to find the hospital parking lot PACKED. We could barely park. The clinic waiting area was pretty dead but we found out later, only because almost every person who walked in the door had to be in isolation due to a chicken pox outbreak. It took forever to get labs done, vitals taken, etc. Samuel was NOT happy in the waiting room so had to be driven around the halls in the stroller to keep his screaming to a minimum. At one point, Mark saw the Onc and mimiced his name jokingly which he actually heard and turned around. He told us he was looking for us and worried that we did not make it in. We informed him we had been there for over an hour and all their rooms were full. He was apparently clueless to this and siad he was going to take care of it. We ended up in the IV therapy area and were then informed about the chicken pox issues. He asked if Samuel had had the chicken pox. He has not so hopefully we don't get them now. Chicken pox and leukemia are bad news. Our meeting was basically the Onc bringing in the proposed road map, which I already had at home, and going over the plan. Showing us the drugs Samuel has not had, showing us the ones ha has already had and leaving the option up in the air whether or not to give them at the time. No decisions were made on that today. Play it by ear. The one thing that was bargained over a bit was when to start. He suggested Monday (of course) or the following Friday. We informed him of our wishes and wanting to get some last minute things done, appointments taken care of, and having ONE holiday to be normal for. I reminded him that we were in the hospital a long time and no one had any fun, much less a holiday. I spent our Wedding Anniversary, Samuel's 2nd birthday, Mother's Day, Father's Day, Memorial Day, Mark and my most special anniversary, the 4th of July in the hospital. We had Labor Day weekend ruined by hospital stays. Enough is enough. He proposed that we start 10/29 which is a Friday. We would be inpatient for Friday night to Saturday,and then come back Sunday and Monday. Sunday being Halloween. No thank you. I suggested Monday and asked him if that would be okay and he said he understood and gee, we get 2.5 weeks OFF! He will still take on oral chemo, but we don't have to go in for 2.5 weeks!!!!! This is the best news and will give me some time to regroup mentally to accept the inevitable. We really want Samuel to walk by himself before going into this as well.
His counts are better than ever which I just find humorous for some reason. Seems that their chemo is having the opposite effect. Today his white count was 8.2, his hematocrit was 39, his Hemoglobin was 13.5 and his platlets were almost 700K. His ANC was 5100. Way up. I told Mark it was probably because he got a ton of breastmilk yesterday so that probably boosted the counts for today. At any rate, he is doing well number wise.
He had his spinal tap and bone marrow today. We don't yet know the results from the marrow but I will call tomorrow if they don't call me to check. I am sure it is fine. I think that the Onc always looks at it before pathology does anyway and if it was questionable, I am sure we would have heard. Especially since we don't have to go back for some time. I could tell that made him nervous. Samuel handled it well and seemed a bit more sore tonight than he did earlier. He still has a bit of a cough lingering and a runny nose from time to time. But he was happy to get home.
We stopped to look at RV's on the way home at a place my Dad suggested but found nothing in our price range. We will keep looking. We found one that would be acceptable space wise but too much $. And like Dad says, there is a car on every corner, there is an RV for sale everywhere you look. We are bound to find something. Smelling the inside of one reminded me of growing up. My parents always had a motorhome and we took many trips. We lived in CA then and took many trips here to WA, of all places. My Dad conned me into wanting to move up here by telling me that all the days were overcast. I have an albinism gene that makes my eyes very sensitive to the sun and bright light so I always hated CA because I could never see outside without crying. It wasn't until I got contacts that I could wear sunglasses and that changed everything. Anyway, my Dad failed to mention that it rains a lot here. Had he told me that, I would have said NO WAY. It doesn't seem to rain as much here these days as it did when we moved up here. But the overcast days are my favorite. Match up to my mood as of late. Gray skies, threatening rain but never really does, calm, cool easy on the eye. Anyway the RV's were fun to look at and dream of better days ahead. Or at the very least, a place to call home when we are away from home. The older kids would just think it was the coolest thing too. Samuel enjoyed looking and sitting on couches and beds. No one really bothered us while there which was also nice. Kind of like stepping into dreamland, only for a little while. Then back into the care for a dose of reality, long drive home. An RV would make that much more bearable and we could do school stuff along the way.
I really just want to have a little fun. Fun....what is that? I told Mark I was sorry we had not met earlier in life. Would have saved me lots of heartache. He had a traveling job for several months long before we met....and a stupid girlfriend who did not have a clue as to how good a man she had....probably a good thing for me, but at any rate, I told him I was sad we did not know each other then. Then he would have had someone he could trust to come home to, or to fly out to see him. Just daydreaming a different life scenario I guess. Seems like someone stopped the ride too soon for us in a lot of ways. So I suppose we will just find new ways of having fun. Samuel will be our teacher. He can have fun even in pain. Even though he has to go through miserable things. He can smile, laugh, hug and kiss. He can love, he enjoys the little things. I read the handout the Onc gave me today and the figure an ALL patient gets 30-40 spinal taps throughout the course of treatment and 4 or more bone marrow aspirates. Samuel has had 6 spinal taps thus far and 3, or is it 4 bone marrows? I have forgotten. He has a long way to go. This treatment plan specifies that he will have a 3 year maintenance phase of chemo after the six months left of intense chemo. So for 3.5 years, this is it. And after that, for the first year off treatment, he will have to go in once a month for check ups. The next year, he will have to go in every three months. Kind of starts beating into your head that amount of time we will spend traveling back and forth, etc. Assuming everything stays on track this time, he will be to Long Term Maintenance sometime late April/early May. Then when he is 6 years old, he will finally be done. We need to think about having his guts hooked back up in May so that will be a major surgery in which they anticipate he will need several weeks to recover from. That will be a milestone and an awful thing at the same time. After all his past surgeries, I will leave that thought on the back burner. In a few years, he will need to have his shunt revised to be longer as he grows. Another surgery. Any port issues will be resolved with a surgery. I think they figure they last a year or so so every year a replacement. More surgery. At some point he will be old enough to ask why, to know ahead of time, to feel fear. I told Mark I was surprised that he does not see the Children's sign and remember the big driveway and start crying knowing what is next. But he does not seem to care. He is usually a happy little clam until someone messes with him. He even laughed and tryed to play with the Onc today. So maybe he will be fine as he grows up. Just accept a life of torture as my Dad says. Tonight I looked at his back with the two bandaids on it and I told Mark I felt badly. Mark told Samuel to tell Mama it was okay. Samuel got up and hugged and kissed me several times. So while he did not say it was okay, he knew what his Daddy wanted him to do. He told me he was scared today while the Onc was laying out the plan so I know he understands that all the talk is about him, and not good. I want to take it away, but I cannot.
So we shall have a lot of living to get done in the next weeks. A lot of things to get done as well. I have some things that I want to do sewing wise just to feel "normal" for a little while. Mark is building a gun. The kids have a lot of schooling to do to catch up from last years spring break that turned into summer. Samuel has a lot of laughing and smiling to do. Anna just wants to eat all the time. I want to take them to a corn maze, on a ferry boat ride, on a mini trip somewhere they can ride their bikes. I want to wake up somehwere that does not remind me of this nightmare if only for a little while. I need to remember that these people filling him with poison are doing what they think will cure him and they are not the "bad guys".
Please pray that God's Will will be done in our lives this week and next. We have some things we need to do, buy, and find and we need the Lord's hand upon our loves to get it done both time wise and financially. Pray that my children enjoy life, that we all do. Thanks so much for the lovely notes you have sent me! Our love to you all!
Update 10/13/04
Today everyone got the dentist out of the way for the rest of this year. We wanted to get Samuel's teeth checked and treated before he starts the intense chemo again. Samuel still has one two year molar that has not come in. I thin khe got the previous three over the summer with the help of morphine. The dentist said his teeth looked great but the next time he comes in for any dental work, even just a cleaning, he will have to be on antibiotics because of his VA shunt. Apparently any line to the heart can be affected by dental work, etc. Kaysha's teeth were great, Daniel has one little cavity in between two back molars. All the kids were very good and did really well. Samuel had a huge fit when they looked into his mouth but that was expected and screaming only helped to open his mouth wider so they got a very good look. Anna does not have any teeth yet, thankfully, because she bites already.
It has been a busy week even just being home. I thought I would get so much more done. But with schooling the children, that is a full time job in itself. Samuel's ileostomy bags continue to cause problems. We had to replace the bag FOUR times today. FOUR!!!!! That is ridiculous. They keep popping loose in the same area and nothing we do seems to help keep them on. Taking the bags off invoove ripping them off which is not fun for anyone. I usually put him in the tub as that loosens the paste enough that it isn't as awful to get them off. His skin is looking much better though. The rash is going away which is good news for everyone. We have been putting Rescue Remedy on the skin and letting it soak in really well. Then cleaning any residue off and for awhile we were using EMLA cream on it because the rash was so bad that the minute the paste touched it, Samuel would scream bloody murder, which only pisses me off to the entire situation and how unfair it is. We will be dealing with the ileostomy for at least another six months and changing the bag four times a day is going to drive me insane. Even the NP at the hospital agreed it is ridiculous but no solutions she offered have worked for us. Samuel just needs to start walking again, no more crawling or leap frogging. That would help. Each bag change ends up being an hour long simply because of the bath, dry time, soaking the cream in, cleaning it off, letting it air out and then getting the new bag on. One did not last ten minutes after he got up out of bed. He will cry when he notices if is off and say his "air bag" hurts. We call it the Air Bag since it is always full of air and is the perfect canned fart. Open it up and kill the whole room. Then it travels around the house. You can smell it upstairs within minutes of opening it.
Tomorrow is Samuel's last spinal tap of the four in four weeks. This will hopefully be the last time he gets this many in four weeks time. He has been feeling yucky the last few days again. Just like last week. He had some sad days starting around Monday and perking up by the time it was time for the next tap. He has a nagging cough that we hope is not Mark's cold. Daniel is still coughing and his sounds like whooping cough. I would be concerned if he did not always sound like he has whooping cough every time he gets a cold with a cough. We are having our meeting with the Onc tomorrow to discuss the future. Mark and I talked today about what we feel is best for the next few weeks and as always, the conversation was short because 99% of the time we are in complete agreement. We think alike and about the same thing at the same time a lot. I am told by him frequestly to "get out of his head".
The Onc was talking about how to keep the Leukemia out of his marrow and what to do about that treatment wise. That is the plan of the conversation tomorrow. I guess after four spinal taps, he feels pretty safe that the CSF is treated. Our feelings about the next few weeks are that Samuel needs to have at least one fun holiday. Kaysha's birthday is next week. Daniel has to go back to the dentist next week. Both children have eye doctor appointments next week. Mark has a very special appointment he wants to get into the equation before we basically live in Seattle again. And Halloween is coming up and I know a little boy who wants to be a Quack Quack. He has had nothing fun to do since early April. My other children have had no real holidays with all of us home either and they all want to get pumpkins on the farm, have Dad carve them, light candles, take pictures, pick out costimes and do SOMETHING! I think we deserve that. The children always have their pumpkins faces resemble their own emotions. Kaysha usually has a devilish grin. Daniel's is usually frowning or yelling. Samuel's is always happy. I think ANna will have her own this year too, maybe a toothless grinning one. This is something we have always done and enjoyed. I don't want Samuel sick for this. I don't want to be in Seattle for this either. Going there for the day and coming home is not the same as being home. A short trip up there is an eight hour day in which everyone's schedule is off and no one can get anything done after getting home. Tomorrow will be another day like that. May as well not plan on doing anything. I want a little more time to figure out what we will do with Anna when Samuel is inpatient. I am giong to try to wean her to a cup at night since she still thinks getting up to eat is necessary. Maybe she will give up that idea and start sleeping through the night again. If she will take a cup, that is half the battle. Then Mark can feed her. Speaking of sleeping through the night, Samuel is now sleeping through the night. What an accomplishment! This is nice. Just in the last few nights I have realized I was not going in there repeatedly. The only thing I go in for now is to fix the pump if the tube becomes clogged.
I want two weeks at least to try to work out some of the last details of life. And I want to enjoy Samuel, love hime and savor these days as if they are the last. Kristina always told me that if her baby was sick and she decided to take them out of treatment, of it she thought they might die, she would hold them all the time, take lots of pictures/videos, etc. While I don't think Samuel will die from this, I do want to spend some time doing these things. Kind of like stopping the world and getting off in our own land for a little while. Things are not okay and may not be for awhile but for right now, he is thriving, happy, loving and he needs me. He asks me to hug and kiss him all the time. If he is not with me he is not far behind. If he does not know where I am, he is looking. And I would swear he appreciates all we have done for him thus far. He forgives the four bag changes, he thanks us for fixing it, changing his diaper, feeding him, giving him water, helping him to walk and for hugs and kisses. It is obvious that even while he seemed to be a vegetable, he remembers everything that we did for him, with him, or asked him to do. All the hugs and kisses are making up for lost time. I would ask him if he wanted a "huggie" when he was so out of it and he just never even responded. I would give him one anyway because I knew the answer but I was just hoping and praying for a response. Not one day passes I don't realize we have a miracle. But in looking ahead, the future is uncertain and I don't want to look back someday and regret that I did not slow down long enough to have a little piece of heaven, as good as it can be right now, on earth. Many of my loved ones are in heaven and while I know Samuel would be well loved there, he belongs with me and I just want to savor every moment of his life today, here, now.
Mark and I talked about getting two weeks into treatment and having some weird complication happen and what we would do then. We both believe that with Samuel's diet, his current vitality, the healthy marrow we know he has, his obvious desire to live, his love for us, our knowledge, the better hospital and more competent staff and the ND now on the case that he will have a much better chance of getting through this. Pairing that with you prayer warriors, my personal friends and God, how could we NOT beat the odds? At this point, even if we started the intense phase of chemo tomorrow, we are looking at Thanksgiving and Chirstmas pretty much being shut in at home because we have agreed that we will isoloate our family when Samuel's counts are low. We will not take the chance of getting him sick. So our last trips as a family out and about in public places will be limited to now as well. I can't go anywhere by myself and I couldn't anyway because I can never get too far away from Samuel so I am trying to enjoy the shopping trips to the market, etc because soon Mark will be going it alone again. Let's just say we had a major wake up call and we don't want to be stupid. I really would still like to take a small trip to the beach or something while the weather is still nice here. I don't know if we can make that happen. Still up in the air on the RV as well. I talked to my Dad about what to buy, where to buy it, etc and we may try to do some looking soon. Now is the time to buy at least. And it would be a nice thing to have packed and ready to go at a moments notice.
A lot to do, so little time. My head feels cloudy, scatterbrained. Please pray that we get some good answers from our meeting tomorrow, that we are all in agreement on the terms we will bring to the table. Please pray that Anna will remember how to sleep through the night. That would make life so much easier right now. Please pray for Samuel as he has yet another proceedure tomorrow. I don't know if they are still planning on the bone marrow as well. We will ask tomorrow. Pray for us to have just a little more peace. I realized just the other day that we have actually NOT been inpatient at the hospital now for over a month! Seems like a world record. Not looking forward to the uncertainty of going back.
I spend a lot of time lately checking out other's Caringbridge Pages, praying for these families and trying to add names to my site. Please check out the two lined above. These families could really use your prayers, words of kindness and encouragement. A lot of times God speaks through you to others. If you feel led to send a note, sign a guestbook, please do. It helps a lot to know we are not forgotten. Especailly in Leukemia cases where the treatment is 2-3 years. Sometimes it is hard to see others living "normal" lives when I feel like mine will never be normal again. You can start to feel lost from society when you no longer do "normal" things. Kaysha was asking me tonight who old Samuel will be when she is 12. Doing the math is easy, stomping out the hidden thought in the back of my mind that wonders if he will be alive then is another feat entirely. It is hard to answer the question honestly.
I will be adding more links to other's pages on Samuel's main page to help raise awareness and lengthen the prayer chain for families who need support. I want to help them if I can even if it is just by pray. Never underestimate the power of prayer. We thank you for caring for us and checking on Samuel. Thank you for your prayers. Special thanks to Samuel's Angel, Sheree. We look forward to getting to know you and yours as we travel down the windy road we are headed down. All our love!
Update 10/10/04
I started an update a few nights ago but was rudely interupted by Daniel throwing up all over his room. I thought we were over the fluish crap. He and Mark are still coughing with similar colds. Kaysha, Anna, Samuel and I are all fine.
I have a lot to say and I am sure I will forget some......
The days seem to get busier rather than slower. Again, I feel that rushy feeling to get things done. And at the same time I want to savor every minute with Samuel as well as the rest of the family.
Our Friday Onc visit was quite interesting. First we arrived to a very busy waiting room. We were actually on time for our appointment even. I had been reading the appointment info that the scheduler sent incorrectly so we were always showing up 45-60 minutes late. These people don't bother to consult us when making the times, they just send them out without asking about preferrences of convenience. So we just show up when we feel like it. Some things they do at Childrens are really good, while other things are lacking. One is definitely the scheduler.
Anyway, since Mark and Daniel were still having cold symptoms, Mark took the kids and went to the playroom while Samuel and I waited for his appointment. I don't know if it was the fact that I was alone or what but people seemed to come out of the woodwork to visit with us. A little Mexican girl came over to the table where the train is to play with Samuel. She looked to be about 3-4 years old. She had the same feeding tube as Samuel taped to the same side of her face even. They played so cute together although the little girl said nothing the whole time. Her dad finally called her away and Samuel was sad. She did wave bye bye to him though. I think she was probably on heavy doses of steroids because she had a mustache and extremely hairy arms. She was so cute though! Most everyone who talked to me assumed that Samuel had a brain tumor. It seemed strange to give them the short version of his story.
We got called back for the port to be accessed and it always draws slow at frist. This day was no exception. Other than crying here, Samuel never really cried the entire time. He was so happy go lucky with the children, the staff and even the Onc. We commented on the way in that he had been feeling droopy all week and now that he was feeling better it was time to do it all over again. Sad. But then I think of how he was at MB, when he was able to do nothing at all and they just seemed to not be able to wait to begin poisoning him in that condition. So, at least now, he can talk, move and play and be happy.
Mark and the kids arrived in time to go back to a room to wait on the Onc to come in. At least there we were isolated. We ran into the dietician on the way in, you know, the one who could not bother to call or consult with us.... Well she commented on how great he looked, etc. I agreed and walked on by her. The Onc came in to see Samuel and was again, beside himself in disbelief of how well he is doing. Just thrilled. We talked about next week being his last spinal tap and at that point we were going to visit about where to go from there. Whether to give him more recovery time, or start intense treatment again. He still wants to go with the more intense protocol, etc. But then concedes that he does not want to see him go backwards either after such an amazing recovery. So we go back for that on Thursday of this week and will be making some of those hard choices again. At some point in our visit with the Onc, the dietician popped in the door again and he told her to come back. Seems that they got word of Samuel's diet change and NOW they are interested. The Onc asked me about the formula change, etc and I told him that the ND was supposed to fax them the info next week. Just gave him the brief run down of what I was feeding, which varies from day to day anyway. And it really annoys me that now they are interested because they don't think I am following their orders. Little do they know that I have not been doing their crap for months. Samuel is thriving, no doubt about that. The only one who even had a clue what to do for Samuel given his GI tract issues was the ND. He told me what the output should look like, gave me stuff to make it happen, told me he figured that Samuel was not absorbing all his nutrients, gave me something for that, helped balance his minerals so that he would want to eat something other than salty things, etc. It pisses me off that I would ask for help several times from the Staff at Childrens and get nothing and NOW they are interested. The Onc wants to know if he is peeing well, if his ostomy output is okay, etc.....who is the one who is responsible for all these parts working right-right now? Not them. On their diet, Samuel never peed and was miserable and puked ALL the time. The Onc asked if he was still on any pain meds or Zofran (anti nausea) and I said, "No, isn't that awesome?" He agreed.
He went back for his tap which did not kill me inside as badly as it had in the past. It still gives me a horrible feeling in the pit of my gut when they show me the vial of poison with his name on it but I also know that God is keeping him safe. I got his labs while I was waiting for him to be done. The absolute best news of the whole visit is that his liver function values are NORMAL for the first time since July. I was thrilled, glowing, overjoyed. I have only been working on this for months now! The values show damage to the liver from toxins and his liver is now fine again! What a relief! I have been trying to fine tune his diet to get these down and while they had come down quite a bit, they never quite hit normal until now. And another interesting note were the rest of his counts. His white count was 6.7 or so, so down a little from last week but still in the normal healthy zone. His platelets were almost 700K, so up from last week. His hematocrit was 41.4 so way up, on the high side. Guess his iron levels are good. And his Hemoglobin was 14.5 so also high. Seems that the chmo is having the opposite effect on his counts. His ANC remains at 3700. I never saw the Onc after getting these so I wonder what he thought......He did comment that he felt that Samuel's marrow was very healthy and that would be a benefit going back into chemo.
While waiting for Samuel, guess who came out to visit with me in the waiting room. That dietician. She wanted to know if I could talk to her while nursing Anna. PLEASE!!!!!!! If I can nurse Anna in a crowded lobby, I can talk. This is a hospital that supposedly advocated breastfeeding yet they are all uncomfortable with seeing it. And I am discreet BTW. No booby hanging out for the world to see. I told her I did not know the name of the formula that I was given by the ND, which was the truth, I had only just gotten it the day before, and told her I would fax the info to them. But oops, I forgot, like they forgot to call me, all those times. I suppose I will have to do that tomorrow, but figured they will have no clue what the stuff is anyway so they can wait. Am I pissy? Yes. This woman annoys me and she doesn't seem that intelligent. But once they have the info, when we are inpatient again, no one will want to mess with his feedings because they won't have the food supplies.
The Onc gave us the brief outline of the beginning of the next phase of treatment. He will be inpatient the first night for a chemo in the mustard gas family. Then the next few days we come to clinic for IV infusions. Then the weekend off, then back the next week for four days of IV infusions. Then after that is when they expect his counts to bottom out. "If he will get an infection, ti will happen then," says the Onc. I am firmly of the opinion that all Oncs need to try their own medicine. They need to have their counts dropped to near zero and see how they feel. Maybe then they will feel a bit more sympathetic. We expressed our concerns about Samuel's skin around the stoma being rashy at times and when his white count is zero, it won't heal, and will get worse. Also if his shunt malfunctions, what then??? He told us that Samuel's problems will not be any different than anyone elses. Really? Just last week, we were the most complicated thing to walk in the door. The Onc was asking about what Samuel actually eats, vs. in the tube and I told him that he will ask for things, we will give him what he wants, and then for whatever reason, it is wrong and he wants nothing to do with it. He stated that some people say their tastes are off while on chemo. Again, another reason they need to test their own meds. I hate talking to a professional who tries to give me second hand information. I get better info on chemo from Monika, bless her heart.
I really feel in my heart that Samuel will do fine. But I know that we will also be a lot more careful this time around knowing what we know. I hope that he will start walking soon because if he keeps crawling/leap frogging around, the skin on his knees will become open sores when he has no white count. I will never forget the pressure ulcers on his head from just laying flat once his hair was gone. And that is another thing. His newly grown hair will all fall out again. Then people will really think he has a brain tumor. I am going to start making a conscious effort to increase my milk supply so I can pump him as much as possible as soon as possible to help give him good antibodies as well as take all the supplements that he cannot once his white count is below 2K so he will still get them through me but in an already filtered way.
