Update for 7/20
I signed on to send a quick update nnd thanks, but see my wonderful friend, Kristina, already did.
I am so overwhelmed with the love we feel from this group. Thank you all so much for praying us through these last 11 weeks. I feel in such awe of your love and support to my family. You have all surely prayed us through this.
Words do not even come close to expressing my feelings toward you all. Thank you! Your gifts of friendsip, sacrifices of prayers and finances for our benefit are overwhelming and I cannot thank you enough.
Samuel has a dye study requiring a lumbar puncture and a bone marrow check scheduled for today. It will be a long day for him. We will again know if he is in remission from the leukemia today. They will also acess the flow from the
spinal cord to the brain for chemo purposes. This study will take two days
They are planning our discharge tenatively for Thrusday assuming he continues to improve. I don't know what I will do at home, I haven't seen my house in well over a month. Samuel will be a full time job and thanks to you all, we will be
able to continue to stay home and care for him. When I look back at the last 11 weeks, I know we were able to not work and do the balancing act of caring for him and the other kids with your help, love and support and most of all prayers.
Samuel has a long road ahead of him. The oncologists are giving him low dose chemo to keep him in remission for about two months or so, long enough for him to rehibilitate. Then we have six months of hard chemo again and then 2-3 years of maintenance. We will continue our treatment in Seattle from here on. The staff here is fantastic and the oncologists I feel, really care about Samuel and us. He is completely off all monitors and off TPN for the first time in ten
weeks or so. I wonder if he will remember home.
I have so much to say and a lot of update to put on my site when I have a computer able to do so. It has been a long hard last few months. At one point, Mark said, if we can get through this, we can get through anything. Thank you
to all of you! I feel so lucky to have had such a wonderful group find us and care about Samuel. As you all cry tears of joy for us, we cry tears of gratitude to you. We could not have gotten this far without your love and care for us.
Most of all, Praise GOD! Prayers work, God is faithful. Samuel is God's child and will be a mighty man of God one day with a wondeerful testimony of God's faithfulness and the kindness and wonder of all of you who helped him along this
journey. I look forward to getting home and sending lots of notes to you in thanks privately.
We will continue to keep you updated and post pictures of his homecoming. Please continue to keep him in your prayers as we go home praying to NEVER be hospitalized again.
Dear Lord, please bless ALL of the people who I do not know who have been faithful in prayer, love, gifts, financial support, friendship and faith toward our family. Thank you, God for keeping us going. Please bless all these lovely
people a hundred fold in their loves. Please touch those who may not know you as lord to reach out to your love and hope. We thank you that you are our hope and strength. Thank you for bringing all these faithful prayer warriors, and
loving people to a place to know our needs and care for us. Please bless them, each and every one.
In Jesus Name, Amen.
With love and hugs, and tears,
Jen
Update for 7/19 written by Kristina on our behalf....
The cat scan showed that the fluid build up in Samuel's brain is going down! Praise Jesus!! He said night night to Anna last night and said, "Okay, okay" today. His legs are gaining a little more control and HE IS EATING! When Jen gives him anything, he shoves it in his mouth like he is starving and freaks out if she tries to take some away in an effort to make him slow down!
Are you ready for this next piece of info?
They are shooting to go home Thursday.
Are you FREAKING OUT??????? Because this little desert girl here is TOTALLY FREAKING OUT!!!!!!!!!!!!!!! WAAAAAAAAAAA WHOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!
Update for 7/17 written by Kristina on our behalf....
Mark says Samuel is a happy man today. They did a swallow test yesterday which he passed with flying colors, so he is now eating soft solids like pudding, etc. He does have a fever so they did a chest xray, lots of blood work, etc. but hopefully that is just a minor thing. Jen asks that you please pray specifically for that.
For anyone trying to reach Jen at the hotel, the room number has been changed to 207.
Jessica - Jen remembered your name!! It took her a while, but she absolutely did. Folks, this kind woman has offered to provide some type of catering to the family. WAAAA WHOOOOOOOOOO!! Won't that be nice!!!!! YEA! Jen says, bring it on! They're hungry!
Jen wanted me to tell you how Samuel has reverted to some baby habits (this is normal, given his circumstances). He is currently chewing on and mouthing all of Anna D's teething toys. She thinks this is WAY cute.
Melanie and Jonah in CA - THANKS!! These two sent a Blue's Clues blanket that is satiny on one side and then embroidered God Bless Samuel on it. Isn't that SO sweet!! Jen has been trying to find him a Blue's Clues blanket so she really liked this gift.
Kristen KM - Thanks so much!
Mark is going home again soon so Jen is excited to see what other surprises might be awaiting them! This has really perked her up. Her voice is so animated when she talks about all of the lovins she's been getting in the mail, or brought to her at the hospital. Thanks from the bottom of my heart, guys.
The computer angel wrote today to let me know the computer was shipped yesterday!! Jen is so eager to be able to communicate with you guys daily herself! That will be so stinkin' fun for her!
Update for 7/15
Samuel is in surgery, again....
This is seven surgeries in seven weeks, seven is God's number. Pray for his
complete recovery today. It was a very hard thing for me to send him again.
Ugh! I refused to sign the consent form as an act of my displeasure so it is a good thing they did not need two signitures...
Will update later through me or Kristina after he comes back.
Thank yuo to all who support us through gifts, prayer and friendship. As I told
Kristina, who always comments on how she has sent us nothing, sometimes just being a GOOD FRIEND means so much more than any gift. I am sure it is hard for her to hear what Samuel goes through day to day but we keep calling, talking, crying and laughing together. A good friend is worth more than gold, gifts or any worldly item. I am very thankful to have a friend like this, thank you, Kristina.
Thank you to all my GOOD friends here.
Later update for 7/15 from Kristina....
He didn't have to go to ICU, he is back in his room. He looks like a "sad man" according to Jen, and she is just so glad it is over. The docs said that as far as they can tell, everything looks good. We just have to trust that it will work this time.
Update for 7/14 by Mark
Jen is glowing!!!! Samuel just ate some pudding for the first time in 8wks.Today is his best day yet. The surgeons are planinng Surgery for him tomorrow, they want to place another shunt (programmable this time) because hes been leaking fluid out the top of his head.. :( We're not thrilled because of all the improvement we've seen this week. the 3rd ventriculostomy they did have a 20-50% failure rate in the first month. They just did another cat-scan, and hopefully
they will see huge improvement and not want to do the surgery. Jennifer is currently fighting some type of cold that hit her fast and hard(perfect timing).Thankyou you all for your generous gifts and prayers.......they keep us going...
Respectfully, Mark
Update for 7/12 by Kristina on our behalf....
Samuel's surgery was not a success. He can't walk, talk, sit, etc. Last night fluid started leaking from his brain, and they have determined that the third ventricle that they were draining into isn't absorbing the excess fluid from the two huge ventricles. They want to put another shunt in with it draining into his abdomen. As you may recall, the last time they did this (the original shunt) an abcess developed at the drainage point secondary to all of the scarring in his gut from the chemo drugs and resultant removal of most of his intestines. They docs tell her that they may be able to position the drain in a better, less damaged part of his gut, but... as you can imagine, Jen is freaking out. This is the straw that appears to have her questioning the Lord. I didn't know what to tell her. I said, "I know the Lord is there and I know that he loves you, but I can't explain to you why this is happening." She just doesn't know how she can do it. She is in the hotel room right now, separated from Mark, Anna is crying, the kids are bored and mildly naughty and her son is possibly dying. She is just hanging on by her fingernails. She is living life in five minute increments. She is not ready to give up, but the thought of him going through surgery again is just about to give her a stroke. Speaking of strokes, Mark's dad had his second mild stroke in a month last night. As if there wasn't enough going on.
On the up side, the older kids are doing better this week after spending lots of time with mom. That is really the only positive thing right now, it seems.
She really feels she cannot go on. I told her that I ABSOLUTELY KNOW SHE CAN! I told her that if that means she has to watch him writhe around in agony after another surgery or another, she can do that. I told her if that means that someday she holds him close as she lets him go, she can do that. I CAN SAY WITH TRUE CONVICTION THAT SHE IS THE STRONGEST WOMAN I KNOW. She can do anything her baby boy needs her to do. I have so much faith in that - I have so much faith in her. I just love her so much... and Mark - wow... he is so sweet he just about flatters me to death every time I talk to him. Sometimes when I am talking to her, I just pray that the Holy Spirit tells me what to say... tells me how to comfort her. Lots of times I just murmur, "I know... I know, sweetie". Often I think of all of you guys. Faceless names that I feel so connected to in this strange medium we communicate through. I draw strength from you guys. I feel you and I know you are there and so does she. You guys are so important to her. You must not ever feel insignificant. When she asks me a question that is impossible to answer, when she breaks my heart with the aching in her voice, I really do think of you guys and what you might say..., how you might respond. Dawn, I wish I were as eloquent as you - so many of you others are so passionate. I feel so bumbling sometimes, but I must serve a need, because she keeps gracing me with her phone calls. Pray for me - pray that the Holy Spirit is SUPER active in me to guide my words and actions. Pray for me that as I pray with her on the phone that I will say the right words to touch her heart and dissolve her anger. Just pray.
Update 7/10 by Mark
After 2 days being monitered in horrible ICU , We were moved downstairs today.... It appears that the 3rd ventriculostomy is working. It kinda started working slow and hopefully by Mon will be good enough that they will pull his drain tube and we'll be done with this terrible part of our ordeal.We are restarting his feeds AGAIN, and hope to have him off of the IV food soon. Samuel looks pretty good considering........Jen had a hard 2 days not being able to stay with him for very long. Sam gives hugs and tries to give kisses, his motor skills are gonna need alot of work :(
Thankyou everyone for the gifts and prayers, it keeps us going, things are horribly expensive in the city. Glad I'm a country boy :) Gotta run Kaysha and Daniel are STARVING again .....
Update for 7/9
Samuel jsst had his 6th surgery in six weeks yesterday. Now he has a third ventriculostomy. We are all praying that this will solve the hydrocephalus and he will not need to be shunted. Please PLEASE pray for a miracle here. If this
does not work, they will shunt him again into the abdomen where it did not absorb last time. This will start a horrible circle of surgeries again if the 3rd ventric does not work. He looks tired and DONE with surgery now. I cannot
take anymoer, and I don't possibly know how he can either but he keeps trucking along nevertheless. Please please pray tonight. The neurosurgeons make a decision tomorrow. We are in ICU again. We hate it. Anna cannot stay.
I have little to no access to a puter now and am using my time with Samuel to send this. Our website is not currently letting us update our software so we cannot post upddates there. I cannot get home to solve the computer issue which
I bel;ieve is on our end. We are trying to see if we can find a used laptop puter or if my mom can find a local company to donate one to us for the interim.
Thanks to those who sent packages to us. I do not have time to thank you individually so please forgive me. It would be helpful if those who send things send a phone # as it is easier for me to give you a quick call rather than a
note. I would love to thank you personally, of course. Stacie L, I know you are on this list THANK YOU! MOre than you know.
Kristina will hopefully send a more detailed update later. I am off to love Samuel for now.
Thank so much for your continued prayers and love. Please intercede on our behalf tonight.
Update for 7/9 written by Kristina on our behalf....
To explain Samuel's surgery, you have these large spaces in the center of your brain called ventricles. They are always filled with a normal amount of fluid, but two of Samuel's are too full and that makes them expand, which puts pressure on his brain, which causes him to zone out to no-man's land and stop talking, reacting, etc. What the doc did was to put a drain from the two overfilled ventricles into a third ventricle in the hopes that the excess fluid would drain into this third ventricle and would then be absorbed. If this works, he will never need a shunt. If it doesn't, he has to have another brain surgery where they put a tube (shunt) into the overfilled ventricles, snake it down the side of his neck (under his skin) and into his abdomen. This did not work last time and he would have it for life so you can see why Jen is hoping against hope that this works. This was a MAJOR brain surgery he had yesterday.
As Jen said, when you send things to her, please include your phone number if you are comfortable with that because it makes her feel so bad that she doesn't have time to write acknowledgements/thank you's to people, whereas she has time for a quick phone call (FYI - a phone card would be a good gift). She was rambling/gushing about some of the nice gifts she has received lately. Here is some of what she said:
-Someone she doesn't know personally came to the hospital gift shop and picked out stuff for them (she loved the magazines) to then send to their room. She was very moved by that.
-Someone sent a duckie book and rattle and squeezy toy and Samuel somehow found the strength to hold that book with both hands for a minute or two - it interested him that much!
-Someone sent a Veggie Tales movie - S C O R E!!!!!!!
-Someone sent a cool shirt for Samuel.
-Someone won an auction at Equanimity Baby (Stacee, forgive me if I spelled that wrong) and then donated her item to Jen! So now Jen gets to get a back carrier Mai Tai sling from this awesome place! She is so excited because she really needs to carry Anna on her back so she can lean over the bed and take care of Samuel. She is so very thrilled and CAN'T WAIT to receive it!!
Again, those are just some of her comments. SHE knows who sent what, forgive me that I couldn't keep track as she was just gushing on and on and on. You guys are really making her feel special and are giving light to her days with your thoughtfulness. Hmmm... I still haven't sent her a thing... you guys are making me look bad! Just teasing.
The hotel arrangement has been working out so well!! She has been taking time to give attention to the other kids, which is awesome. The were able to go out to dinner last night at AZTECA (thanks so much to whoever provided that!). Can you imagine how nice it must have been to go out to a restaurant and have a nice meal together? Everyone except Samuel was there.
More from me on 7/9
Just a quick note tonight. I got on the hotel computer for a bit. I miss you all, BTW. I am feeling very lonely without reading your notes daily and even updating my site. Living so far from home in a hotel or hospital is not much
fun. But we are together.
Anyway, I forgot to mention that those who know they are receiving pouches, these shipped today. I literally had to have Mark bring out the machine from home to finish up. Melissa J, your pouch shipped too. I hope you will love it.
The proceeds were sent to Levi's Mom, April Dawn, I only wish I could do more for them.
Thanks for sending the update to the group about Live, I read this tonight and now know what to pray for him.
After sending the note earlier, I went into see Samuel and his pressure looked better than it had earlier. Our new Onc, whom I acutally LIKE, came in. I asked him if he had any news and he said he was just coming in as a concerned
friend. My Mom and I prayed that if while we were at Mary Bridge, it was not the right polace, that we would be moved and now we are here in Seattle and I have such peace now. It was truly a God move as evidenced by the hotel that is
being paid for by my insurance. We all know that that is a miracle in itself as normally insurance does not cover your accomodations. The hotel is paid for another week. I dare not even ponder that we might go home by then, just does
not seem possible. At times it seems like we will never get home. You all keep saying we will. Thank you for that. I am usually a positive person but I feel that my joy is gone at times, it is hard to be optimistic though I don't feel so
much like the other shoe is going to drop here. The nurses have been great though I do miss some of the nurses from MB and the social workders as well. Several have called to check on us. We are hanging in there though I feel so guilty taking a swim and play with the kids while Samuel lays in his bed miserable. Our Onc mentioned the thrid ventricle being thickened and pondered aloud that maybe Samuel had Meningitis some time ago as well. Then mumbled something about neurological changes that were not reversible and I cannot even fathom him not talking again so I rebuke that now and pray that he will go home and talk a lot.
He loved the gifts from you ladies, many of whom I do not know. Thanks to the one who came to the hospital and shopped for us there, introduce yourself next time, okay? The book sent to me is awesome! Kaysha and Daniel are thrilled to get their gifts as well, thank you! Also, big thanks to those who sent letters and cards. I keep them with me at all times and read them often, I cherish them and the time you spent doing them. Thank you, God bless you. You are all
wonderful, I miss being able to write and tell you that you are all THE BEST. Much love to you who pray for us, for Samuel. You warm my heart, bring joy to a boy who just had surgery again and got to get some new things to make him try to smile, or laugh. Just to be happy for a minute is a joy to me. I would give anything, all the money in the world,just to get my boy back.
The staff at this hospital have shown us great favor, and are so sympathetic to our situation that I am in disbelief. We are where we needed to be. Thank you to you all, I just don't know what more to say. You are the best. Please keep
praying for Samuel and I will pray that God bless each and all of you.
Much love to you and yours, kiss your babies, cherish them tonight.
Update for 7/7 written by Kristina on our behalf....
Jen would like us to pray that Samuel does not need a shunt. Please concentrate your efforts in prayer on that today.
He is doing a tad better, as is the whole family.
For those of you wanting to mail stuff, I will find out today what she wants us to do and will let you know tonight.
Update for 7/3 written by Kristina on our behalf...
The Bakkus' are settled in at the new digs. Turns out, the State of Washington is putting them up in a nice hotel a mile and a half away from the hospital! PLUS they have free shuttle service back and forth. Can you believe it? Wow. Anyway, the kids are up there with them and yesterday Jen was going to take a break and go swim with the kids for a couple of hours. Cool, huh?!
She is still trying to arrange short term, every now and then, child care so she and Mark can be together at Samuel's bedside sometimes. Let us know if you can help.
Samuel is holding his own. He gave Jen a couple of "huggies" yesterday and made her day.
Update for 6/30 written by Kristina on our behalf....
The Backus's are in Seattle!! Samuel is currently in surgery. They are removing the shunt and will be placing a temporary one just at the top of his head that they can drain from at any time. They are not sure he even needs a permanent shunt. Basically, Jen feels good... REALLY good... like they are going to find the problem, fix it and get that Q-T better. She's just laughin' and sounds so relieved!! It was such a pleasure to hear that in her voice. Currently they are planning to move the whole family down to Seattle and stay there together (YEA). They are planning to rent a hotel room week to week which will be expensive and they also do not receive meal vouchers at this hospital. If ANYONE has a guest house or knows someone in that area with such a house (there are 6 of them altogether), please let us know ASAP. They do not qualify for the Ronald McDonald House because they live less than 60 miles away from this hospital. Even though Jen is legally blind and can't drive, they won't make an exception. So we are hoping for some kind of close by house/apartment or even better, an RV that they can park on-site at the hospital. Do any of you have P.R. skills that can call and tell our story to some RV rental place there? Know what I mean? I am grasping at straws, I know... but you never know, right? I think the name of the hospital is Seattle Children's. I don't know yet how we would mail food gift certs to them, but I will work on that.
UPDATE 6-30
We did another shunt-o-gram yesterday to once again check the flow of sam's shunt, it is working but evidently not as well as the surgeon thinks it should. We are transfering to Childrens Hospital (Seattle) today.
Both Jen and I think this is a good thing, our doctors are standing around like larry, curly and mo. The only bad part about this move is that we have no idea if there is available space in the Ronald McDonld housing there, Its also 3 times as far to drive. Just so you all know Sam DOES continue to SLOWLY improve, but at this rate we will be here at x-mas time. Childrens has alot more neurosurgeons and pediatricians and we think a bunch of new eyes looking at Sam will be a great thing. If any of you are near Seattle and might want to visit/ help us, please send a note, Jen loves to chat :) makes her feel better and less alone.
Laters,
Mark
Update 6/28 by Kristina on our behalf
Samuel's hydrocephalus is not resolving and his CAT scans are worsening so the Mary Bridge folks (the current hospital) have thrown up their hands. They don't know what is going on and they don't know how to fix Samuel, so tomorrow morning the Bakkus family is moving to a hospital in Seattle, about an hour away from where they are now. If any of you in the Seattle area are able to help Jen out, please let me know. All six of them are going up there and they need help with child care. There also may be a delay in getting them into the Ronald McDonald House there (hopefully not). There is RV parking available at the hospital so if anyone has an extra RV lying around gathering dust (LOL) and the Bakkus' could borrow it for a while, that would be a dream come true. Any little thing you could think of would be so very very appreciated. I will let you guys know how they are settling in after I talk to Jen tomorrow, or it may even be Thursday morning before I get to talk to her (that's gonna drive me crazy).
I am encouraged (and Jen is too) about this move. New docs, new ideas...
Update 6-25
Hi! After reveiwing Sam's cat-scan that was done yesterday our neuro-surgeon could find little imrpovement in Sama's head. He came in this morning and tapped Sam's shunt to check cranial pressure (A-OK) , It seems funny to me that their looking for a huge improvement when we've been told that it could take months to get back to normal ( doctors!!!!!) Sam looks good and is doing well, his coughing is stronger, when upset his unhappiness is LOUDER :), He's still not talking but personally I think it not likely he'll have much to say til he gets home. He had an echo-cardiogram today to check his 2 lines going into his heart, they saw a small shadow that may be a small clot forming, or perhaps a sheath forming as his body tries to seal off the foreign matter. So as a result he's going to get another anti-coagulant in addition to the one he's already on, only this one will given as a series of shots 1 a day for the next three days. Jennifer is not happy about poking Sam but we have no choice, the only other way is a drip that must be given and monitered in the ICU! I won;t even tell you what Jen's opinion of that was.......(turns red :)
On Monday we have another cat-scan, to recheck his head. If everthing is good we will start our next phase of chemo :(
On Tues we start a 3 day flow test of Sam's spinal fluid. We are also tapering off his IV feeding and increasing his food through the NG tube. His morphine is also being tapered off at this time. There's whispers that possibly we may get to go home soon it will depend on the next few days ,we're being cautiously optimistic but are not going to rush it at this point.
Peace
Mark
Update 6/22
First the good news, Samuel's bone marrow is in remission. Praise God! A clinical remission only but that is good and will buy him a little more time to get better before chemo. The shunt was placed into his atrium with the port-a-cath and he came through like a champ. He came back from surgery looking like he had never left other than the new band aids and netting and cloths on his head. He is amazingly strong. Thankfully he is because I bawled about the entire time he was in surgery, either outwardly or inwardly, but it was there. I was done with surgeries after the shunt was placed the FIRST time. Now I just feel done with the whole process. Sending him to surgery for the 4th time in less than a month is getting to me in a bad way.
We went over and over shunt placement with the doctors and the Infection Specialist and after tossing around all the options, unfortunately the heart was the only likely place it can go. Mark told one doc, we fought it out but in the end "they won". We will pray for it to always work and never become infected. If it does, they will pull the shunt, pull the port and add a few more surgeries onto our list. We reminded them that once chemo begins we will not be able to just go in and out of surgery at any whim. So I do pray they got it right this time. Samuel looked great, I mean great after he came back. We had Debi today and Trina tonight so he had GREAT nurses. Best of all, he will most likely go back down to the regular floor tomorrow. They are still saving our suite for us. As I type this, I just talked to Trina to find out how he is doing and she says he is doing great, sleeping, good BP and only fusses when she messes with him. I want to kiss him and hug him but I cannot.
We did have the meeting today. Our Onc had not spoken with the Dr from NY until toward the end of the meeting. Interestingly enough the NY doc had never had a patient with a shunt, or as many problems as Samuel has. He made some treatment recommendations for him that should help our chances for less future problems. Apparently no one is really sure how long chemo stays in the CSF so the shunt may or may not be an issue, it will remain to be seen. But the doses given there will not affect the blood toxicity as they are small in comparison to what would be given IV vs a spinal tap. Apparently spinal taps are okay once it is determined that the shunt works. Another CT will be done later in the week to determine if the fluid is down, and the pressure is off. The NY doc is very interested in our case and wants our doc to keep him informed. But as far as the shunt goes, he was of no real help. He did offer a hypothesis that the steroids were what ruined his colon vs. the vincristine. We will never know. Other theories have been thrown out regarding the hydrocephalus as well including meningitis that went undiagnosed due to the vast quantities of antibiotics he was on and an NG tube. Who knows. We may never know.
We wanted to know our prognosis at this point and our Onc felt it was like 60-70% cure rate. If he can survive the chemo from here on and not have any other problems, he felt as if Samuel has a great chance to beat this. He is strong, no doubt about that. All the problems he has had would have beaten down an adult in the same position. We stressed the fact that we would like to take him home. So after the shunt is determined to be working, they are going to get Home Health Care on it so we can get Samuel home when he is considered stable enough to go. Our Onc hopes that that would be in the next 7-10 days or so, but as he states, "he is an optimist." I still feel fearful that the chemo will be hard but heard God's voice today saying "trust in me, not them." Boy ain't that the truth!!
We are going with the flow for now feeling like if our Onc will consult with this other doc for awhile, we will try to make it work here. No one wants to leave home, the kids are so done leaving home now. We just want to bring Samuel home and never leave the house for a year or so. We will play it by ear for now. If more problems arise, we will certainly be making some noise, but at this point, we can't take him anywhere until he is stable enough to come home. More soul searching will have to take place on this topic and I am too tired for that right now. But we have options.
Honestly, I came home feeling a bit blah even though I am franticly tying up loose ends planning to go in to the hospital and stay again until he comes home. I got on the computer and read an overwhelming amount of notes of prayers, support, offers of a place to stay should we come to NY, love affection, from most who we do not know, and a lot whome we do. All of a sudden, I felt better, really better. I cried tears of joy, rather than pain for once today, thank you! You all are so special. You touch my heart and life in so many ways you don't even understand.
A lot have asked how to help me today. Please pray, just pray that we can get Samuel home. Continue to pray for a miracle. God is hearing. Samuel's marrow is in remission. That is great! Sadly we have to continue to treat the ALL, but this is a gift right now. I need to see my little boy, happy again, sleeping in our bed with us, not traveling to see him. I don't want to leave him alone ever again. I don't want him to look at me with sad puppy dog eyes. I don't want to hear Daniel cry when he hears a song on the radio that makes him think Samuel will die. I want him to be able to play with him, and for Kaysha to be able to help comfort him when he feels yucky which I know she will want to do. I want to see Samuel love them, and love Anna too like he used to. I want to see my baby, to hear him speak again, not whimper and look sad all day. I want to see real smiles, real laughter. Pray for his body to restore itself to health today and all the craziness to stop once and for all. He needs a healing to his gut, his head and his body but most of all his heart.
Hugs to everyone who cares, writes, shares their stories, helps us financially. Words will NEVER express my gratitude. Your notes helped me so much tonight. Thank you. I would like to write more, but it is late, and I am exhausted and I will be up early tomorrow to do it all over again.
UPDATE 6/21
Today was more hopeful though did not start out that way. Anna was sick over the weekend so I stayed home and worked and spent time with Kaysha and Daniel while Mark stayed with Samuel. He is burnt out, to put it nicely. He really wanted a day to be home but did not get it. I called Memorial Sloan-Kettering Cancer Center to inquire about a second opinion and it just so happened that the doc I wanted to do it was on call so I was transferred to his office. Lo and behold, the person answering the phone acutally took my info and seemed interested in Samuel. I also inquired about going there and got the number for their insurance specialist. They asked that our Onc send a fax with a brief summary of treatment and problems. After this, we called Mark's parents to see if they can take the kids today and find out that his Dad was eating food and going blind in one eye. They thought it was related to diabetes but apparently it was found out later that that was a minor stoke and a prelude to a big one. Thankfully they caught it in time to take steps to avoid one. Oh, how awful. Now they will be doing hospital trips now as well so childcare there is out. We took them in with us today not knowing what to do with them. No one else could take them on short notice. So we thought Mark would just drop me off with Anna and go home and pick me up later. This seemed dumb and annoyed me. Anna is still coughing/sneezing a bit here and there and I really wanted BOTH of us to be there today. I just wonder what they would do if we never showed up to be with him. Someone has to help make decisions, ask questions, dig their heels lin the ground like a mule ( that would be me ). Anyway, Mark thought Samuel looked good. I think he looks improved from last week but was disappointed that he is not jumping out of bed, unreasonable I know. We are all praying for a miracle and I just am expecting to see a change, not marginal improvement, but a real difference. Anyway, he leaves and then there is just a steady flow of people in and out. Anna starts whining and I feed her and get her to sleep in the middle of it. I was pretty angry for awhile and poor Monika called me right in the middle of it and got to hear all my steam for the morning. I could not do this without Monika and Kristina who call me EVERY day though I know it is hard for them to hear sometimes. I told her about the 2nd opinion with Memorial Sloan Kettering and she was happy. Our Onc still had not been told.
I remembered to call my insurance to see if the 2nd opinion was covered or if I would need to pay it out of pocket. She told me she would call me back. When she did call, she told me that our insurance is having a meeting about Samuel's case tomorrow. Apparently 7 weeks there is growing too expensive. They want to know what the deal is so I laid it all out. I also asked about leaving the state if there was a provision for it, at first they said no, but then they said yes possibly. So we shall see.
Meanwhile, while taking this phone call, Memorial Sloan Kettering called on the cell phone which incidentally was supposed to be OFF in ICU but somehow we forgot. The lady I spoke with earlier relayed that she told her doc all the info and he wanted our Onc to call him directly, rather than fax. This seemed great news! Course our Doc still had no clue yet. One of the top Leukemia Docs, a top researcher and developer of many protocols, highly respected in the field is interested in Samuel's case.
THANK YOU TO ALL WHO RECOMMENDED THEM~!!!!!!!!!!!
THANK YOU TO THOSE STILL HELPING US FIND PEOPLE WHO WILL BE INTERESTED IN SAMUEL! THANK YOU FOR ALL THE RECOMMENDATIONS!
Monika was thrilled about this news! I admit I am excited but cautiously so. I can do angry really well, if you need someone told off, I am your girl. I can do sad really well too, if you need someone to cry at the drop of a hat, I can do that too. But if you need excited, I am NOT your girl. While I am trying to be excited, I guess I am like Mark says he is, cautiously optimistic. We don't know anything yet but at least have a straw to grasp onto.
Anyway, the social workers came in and we let them know we wanted a second opinion and that our Doc was to call, not write. A social worker we refer to as Polly, NOT HER REAL NAME, called him to let him know. He says he knows this doc in NY. He will e-mail him tonight and call in the morning. We made sure he knows we want to know that this other doc says BEFORE the meeting tomorrow.
Meanwhile the shunt operation is on the book for tomorrow, news to us. Remember I mention what would they do if we were NOT there? So the jury is still out on where the shunt will go. We do NOT want to place it in the heart. It would be next to the port-a-cath, two things going into the atrium. I don't think so. No one is thrilled. We discussed putting it in the heart and moving the port. We discussed the bladder again as a temporary solution just to get through chemo. Then move it. It will have to be moved or modified as he grows anyway so moving it later should not matter. We talked about chemo to the CSF, whether it would be effective enough, what will it do if it goes into the heart? Would it be better in the bladder, just pee it out? Many many questions. Food for thought for the Onc tonight. I think he was surprised by the barrage he encountered tonight. While he may spend a few minutes a day thinking about Samuel, we think of him all day, all night, constantly second guessing them. I hope that he comes in tomorrow with answers. Our meeting is at 9am. Pray. Samuel will most likely have his surgery tomorrow if everyone can agree on placement. We want it back in, just in the right area. Then we can get out of ICU once again. This will be Four surgeries in 3.5 weeks. Pray for my baby to endure. His lungs are still junky, and now he is puking up the small feedings that are being given through an NG because his tummy does not want to work yet. He lays in his bed and looks at you with puppy dog eyes.
I held him today. Mark sat him up to show me that his tummy does not hurt anymore! That is so awesome to see. He can hold his head up with help but tires quickly. I got to sit in the rocker and hold him, sing to him, make him to the dance moves to a favorite Wiggles show with his arms. He smiled a bit betore we left and kind of laughed at Mark making all the toy ducks fart. LIttle moments......... Mark does this for all the doctors and nurses to see as well. Most of them laugh but I think a few don't quite know what to say about the ducks farting, LOL! And Anna has gotten in on the pranks as well. All last week while I would hold her, the docs would come though, say hi to her and she would burp in their faces. This is definitely my child, showing her disgust. Delma would be proud. And once the Onc was in and she not only burped in his face but almost puked on his feet. Even better, one day the Onc is checking Samuel out and I am standing right beside him with Anna, she starts pooping, I don't know how he missed the sound, but he starts sniffing the air.....He tells Samuel that he smells like spinach, asks him if he was eating spinach. I had to keep myslef from ROFL!!! So at least there is some comic relief in this madness. I hope you laughed in reading that. I will try to remember the funnies here and there so we will all be okay at some point in reading this. Most people there think Mark and I are funny anyway so they come visit for comic relief. One day we almost got kicked out of the ICU for laughing too loudly with some of the STAFF! Gasp. They tell us to be quiet, yet there are some nurses who are way too loud when they are doing patient care routinely. I had to ask one in particular to talk quietly when entering the room because her voice scared Samuel.
I gave Samuel tons of kisses and hugs to make up for the days I missed.
I thought I would feel better going in to see Samuel today after feeling helpless all weekend, but I think that going into the ICU just made it worse today. It is so much nicer to go to the regular floor. Mark was there over the weekend when a girl coded in ICU. Everyone went running to save her life. Today, she is down on the regular floor. I met another mom whose daughter was run over, they had been there a week, and were leaving. One night while downstairs, the day Samuel got into the tub, I went out to the nurses desk at 11:30pm to find out if they were planning to hook up his TPN since it was over 2 hours late. I just wanted to go to bed and someone hooking up new IV's wakes Samuel and then me. They said they would be in soon. Upon returning to my room, I heard the child next door say, "mommy, I don't want to puke anymore..." and then vomited. I felt immediately guilty, because I knew I was going to sleep that night and they were not. I got up one other time to see what was going on with the TPN, though did not ask again, and realized my other neighbor was also puking that night. Ugh!!!!!!!!!!! That is so horrible. As I felt badly for these children and prayed and asked God why, and to please help them,, I wondered if this is what we have to look forward to as well. And topping that all off, those people got well the next day, they WENT HOME. WE are still there. This roller coaster ride has GOT TO END.
We left Samuel again tonight. As I go to bed tonight, I pray that the doc in NY has some answers.
I am contunually thankful to you, thank you for caring, praying, stretching your resources to help us. May God bless you all.
With love........
Update for 6/19
Samuel is a lot better now after externalizing the shunt. On Thursday, after feeling so totally down, I went in and miraculously felt hopeful again. Something about seeing improvement does that I guess. Mark is there today alone. He went in yesterday alone. I am literally tying up loose ends around here. Now Anna has a bit of a cough/sneeze issue and I pray it is not a cold, but just allergies since she has not been home in so long.
I spent all yesterday making calls trying to figure out what we will do. We have grown unsatisfied with the care he has been given and now with the amount of things he has had go wrong, our providers are scratching their heads. Our Onc does not feel confident in treating the CNS now because if the pressures are off in the brain, a spinal tap will kill him instantly. And with the shunt, any chemo admisistered will simply go right back out in to the body and not be effective. Further, if the shunt is placed in the heart, the chemo will go back into the blood raising the toxicity there which Samuel has already proven his body cannot handle. They cannot put the shunt into the bladder as he will just pee the fluid out and need to take in an extra liter a day to compensate which I can foresee issues with since he cannot keep much down yet. Plus he has no colon to help compensate for the fluid loss so would end up severely dehydrated. We are running out of options. I don't have a clue what the treatment plan or prognosis is at this point and neither does our Onc, which is really scary. We are planning another Care Conference on Tuesday but at this point, with our caregivers guessing, we need to do something else. If the CNS cannot be effectively treated, there is about a 65% chance of CNS relapse. Thanks again to Pam C. for the book you sent me, it has educated me beyond belief.
I spent yesterday calling St. Jude, Seattle Childrens Hospital, Fred Hutch, American Cancer Society, Seattle Cancer Care Alliance, NCI, and more to try to find someone who could give me a recommendation of how to proceed. I came up dry. Basically our Onc has to call to co-ordinate the care or ask for a transfer of care but I will have NO clue if the care will be any better/worse. I cannot talk to a Dr. personally apparently though a few people took pity on me and personally e-mailed some docs to see if we can get any answers. I would like to find an Onc who has seen this kind of difficult case and will be CONFIDENT enough to make me feel like he still has a chance to beat this. Right now, I have nothing. My baby lays in a bed trusting us, or maybe not anymore, and his life literally hangs in the balance. I can find no one who can give me any answers as to how the chemo will affect the CNS if it goes right back out into the body. I don't think that the chemo will help fight against CNS relapse if it does not stay put. They cannot block the shunt or they could kill him instantly. Further, his body has already proven it cannot tolerate chemo without destroying itself. Do I want to continue doing this to him? He is absolutely MISERABLE. We all are. It is not fair. I cannot believe that in 8 weeks time, he can go from a seemingly healthy normal boy to totally incapacitated. He cannot sit by himself, he can barely hold his head up. He is not talking again other than to cry for "momma" occasionally if someone scares him. He is so weak, he can barely cough up what is in his lungs. He is so weak he can barely get the puke up that his body is forcing. I am having Mark sit him up and try to get his head working and his body stronger. He has been bed ridden now for over 6 weeks. He is like dead weight.
Last week I got into the tub with him at the hospital. I thought it would help, give him some Mommy time, some human contact. He could not sit, did not even try to move, simply went to sleep in my lap as I washed four weeks of dead skin off him. I have held him in the chair this week but he just cries or goes to sleep. His body has had it. I keep trying to figure out how he could get so sick.
When we came home after the surgery since again, we cannot stay in the ICU, it seemed like a horrible cruel joke when at midnight, we were so exhausted and Anna was a happy little clam who kept us up until after 1am because she refused to sleep. We had to be up at 7am to do it all over again. This is a total nightmare. Anna makes it 100 times harder. Not to mention a little known fact that I am legally blind so I cannot drive myself to the hospital. This is little known because I don't feel sorry for myself, I don't feel handicapped by it until a situation like this arises, and normally people do not realize that I am legally blind until I either tell them or they watch me read. That condition makes this an even bigger mountain as I cannot drive. So, I am either stranded at home, or stranded there. If I want to go without Mark, my mom or someone else has to pick me up, thus going out of their way to take me. I cannot leave at the drop of a hat. Else, we would just do shifts. One could come home in the day and one could go at night and I could pump for Anna and it would be a bit easier. If we go to Seattle Childrens, I can stay in the ICU, but Anna can't. It is 1.5 hour drive one way for us so Mark would not be able to come daily. Anna would be home, on formula with Dad. Even when Samuel could go the the regular floor, Anna could not stay. So if we go there, I want to KNOW that I will be getting better care or it is not worth it. I would be stranded there, Mark would be here and not able to help support me, Samuel or the kids either. If we go to St. Jude, four of us could stay there. Or Mark and Sam could go and we stay home. But I would then be stranded here too. If Anna and Sam and I go, it would be the same mess we already have but worth it if they can be confident in curing him, or at least letting us know he has a chance. Fortunately at the hospital we are at, they realize that we have very extenuating circumstances and accomodate us by breaking their own rules and letting Anna stay both in the ICU in the day and on the regular floor at night. My kids get dad time, on the regular floor, they can come in and stay for the day and have some sort of family time. We have so much favor at this hospital with the staff that when we went to the ICU, they let us keep our "executive suite" in the hopes that they won't need it and when Samuel comes down, he can have that room since it is so much more convenient for us. At this point, if we go to St. Jude, it will have to be as a family because I cannot care for my family alone here. I cannot be away from Samuel when he needs me more than anyone. I don't want to make any of these decisions without KNOWING the care is worth it, or getting a doc who has seen enough difficult cases that he is not phased by Samuel's condition. But of course, I cannot talk to any Dr's anywhere else, my Onc has to. I think I would be better served by beating my head against a wall.
At this point, I would like to cry to you for help. We need a miracle from God. When I sit and think of Samuel's future, it does not look hopeful. Our hope is in God at this point. There is no one else who can help. If you read this and cry, I have been reading a book about miracles from God and read that we can cry all we want, but God cannot help us. BUT, if when you are crying, you CRY OUT TO GOD FOR A MIRACLE, He will hear. I have been crying out to God all week, but apparently my cry is NOT enough. If you are reading this now, will you please cry out to God for a miracle in our behalf. We don't care if it is medical, just getting a doc who is knowledgable, or a complete healing at this point,. God gave me Samuel when I was not expecting a child. He was a persistant little boy who was conceived by the "withdrawl method". Not because someone forgot to withdraw, but because he was a VERY persistant sperm. We successfull used this form of BC for three years. God gave me Samuel. After he was born, I loved him so much. My MW told me that God knows what we need and he was given to me at the right time. I needed him, just did not know it. My business was founded and created because of him. If not for him, we would not have even thought of a WAHM biz. We would not have made all the wonderful friends we have now who are fervently praying us through. I don't see how God can NOT hear our prayers at this time. Samuel is suffering, the word around the ICU is that he is VERY sick. What more can he go through? But still his vitals remain strong. We have not treated the Leukemia for over 4 weeks and still there is no sign of relapse. Somehow we feel that the cancer is like a ticking time bomb looming though. Please spread the word to any fervently praying group and please please don't just cry for us, cry out to GOD today. We need His hand and answers as to how to pursue his treatment, or the peace of just bringing him home and not treating him at all. Decisions I DO NOT want to make. We are feeling incredibly desperate.
I know that many doctors are following Sam's story. If you know ANYONE who will talk to me personally, or anyone who has experience with difficult cases, please please help. We need an unbiased honest opinion as to whether to pursue treatment, and if we need to leave this state to do it.
Last, thanks so much again to all the fundraisers keeping us going. Thanks to those who sent care packages to Samuel, and cash to us. You have done so much for us, I am in awe of your generosity to us, your care for us and pray to seomeday return the favor to you or someone else who is in need. Samuel's last week has been brightened by many duckies and some new Blue's Clues items as well. I don't know what I would do without you all, your notes, well wishes, stories of miracles, prayers, love and support. Thank you, much love to you all.
Diandra's funeral is today. Pray for Joyce. Pray for me, as I rebuke the lingering thought in the back of my mind that I could be in her situation.
Samuel will LIVE in the name of Jesus. I will meditate on that today. He will be healed according to God's word and be a testimony to others. He is a blessing to all who cross his path. God hear us today.
Update for 6/17
While we hoped and prayed that the shunt would work and Samuel would not have to go through another surgery, unfortunately it did not. We knew something was wrong Sunday night when all of his progress went backwards. His abdomen started swelling up again similar to the ileus and he was in more and moer pain over the next few days. We first assumed it was from the ostomy and his bowels starting to work again. However, on Tuesday it was obvious that it was more. An x-ray showed that his abdomen looked "perfect" but a heart echo showed that there was a pocket of fluid over his liver. Yesterday, Wednesday, a CT scan showed that the fluid was most likely from the shunt, just pooling up and making a huge sore spot for Samuel. His head did not look much improved so another neuro surgeon pediatric specialist was called in to determine what to do. Meanwhile, Samuel was again left to suffer ALL DAY while people attempted to get organized. Meanwhile we were beyond frustrated. Of course, Anna is seeming to become dissatisfied with the situation as well and is becoming more and more fussy as the days pass. Today is day 44 of this stay.
The surgeon decided to externalize the shunt. This surgery happened last night at 9:30pm. Now yet another tube is coming out of his abdomen and filling another bag. Because this is a direct line to his brain, we are back in ICU again. For those who need to know, we are back in 794 thanks to Tammy who continues to work her magic on our behaf. Someone there realizes that we do have a baby in addition to Samuel who also needs a mommy to sustain her life.
Samuel came through the surgery well and we again had to leave him. He has Patty today which could not make me happier because I know he will get the best possible care. We are off to go there now. I hope and pray that this is the end of the nightmare which seems to continue. Mark likened this to the movie "Groundhog Day". We keep waking up in the same miserable scenario and no matter what we do, things hardly change. Now his lungs are getting full of mucus again.
I am feeling rather hopeless there at times. A beautiful girl whom I had the pleasure of meeting died on Monday. Her name was Diandra. Her mom is the most lovely lady I had the pleasure of meeting. Diandra wanted to meet Samuel and make him happy. After a 4 year battle with a blood disorder, she died of a heart attack. No one was expecting it. It hit me SO hard. This was a lovely girl who would give you her clothing to make you smile. We were fortunate enough to spend some time with her. Pray for her mother Joyce who is trying to cope.
Pray for us today as we try to battle the spirit of hopelessness that seems to lume there. Pray for Samuel who has yet another surgery to recover from as well as pray his lungs clear. He has so many things wrong right now, we need a miracle from God.
Thanks so much to all who write, pray and are doing benefit auctions on our behalf. Thanks to those who sent special care packages to us this week. Samuel loves his duckies.
Much love.
Update 6/16 by Kristina on our behalf
They think the fluid on the liver is from the shunt that's in his head. They have the top neurosurgeon in the area coming in to do surgery tonight or tomorrow to reposition the shunt and possibly have it drain outside his body into a bag. That was actually good news to me because if it is the shunt that is the problem, that can be fixed rather than if it was some mystery ailment.
Things have gotten bad, fluid on liver, CAT scans today whole body minus legs. Jen freaking out. Her friend's daughter died of heart attack, found out yesterday - 15 years old - leukemia kid in remission. Jen distraught - feel hopeless, like he's never getting out of there.
6/12
I headed in to the hospital today knowing that Samuel was scheduled for surgery...again
His shunt is working but not as well as the neuro-surgeon would like. Jennifer called me 3 times on the way in to tell me that he was doing things we have not seen for over 4 weeks, including saying "MaMa" , asking the nurse for medicine and laughing. YEAH!
Once I reached the hospital, it did not take Jen and I long to decide that Sam was NOT having surgery today.We showed and explained his improvements to his primary doctor, and explained that unless they could prove that surgery was immediately necessary for his health they needed to wait and watch. At 2:00 the neuro-surgeon showed up and said they'd decided to wait and watch (snicker) good decision doc!
Sam had a great day and it helped Jen and I alot to see the happy boy we love so much.He was able to be completely unhooked from his machines and rode around the hallways for about an hour in the wagon. He then got to spend some quality time with mom in the rocking chair.
Special thanks to everyone who cares, It means alot to us.
Warmest Regards,
Mark
6/11
Samuel is not as good as the neuro surgeon hoped he would be and the MRI from yesterday and the CT from Tuesday show no new improvement. He is crying, but still not talking and moving his head. His heartrate is still in the 160's and higher and he is febrile constantly. They are doing a dye scan through the shunt today to see if it is blocked, slow or just NOT working. If any of these are the case, he will most likely be back in surgery AGAIN to correct the issue. UGH! My kids were here yesterday which was nice but when they left, I felt as if I had not time with Mark and was thoroughly depressed. If the surgery happens again today, we will be looking at another week to two, or MORE before leaving. I made a few friends here who went home now so am feeling very lonely when Mark leaves. Now the weekend is upon us and we have grown to hate those. Please keep us in your prayers today. We would prefer Samuel NOT go back to surgery but the shunt needs to be working properly. This will be three surgeries in 14 days. I wish I could take his place because I am so stubborn and hate hospitals so much that I know I would be able to fight without ceasing just to go home. I touch him and pray that my strength will be transferred to his mind and body. I know he has a lot to say and wants to talk to us, but simply cannot. Pray Blessings on the staff here who continue to care for Samuel and break the rules occasionally to see that we are cared for properly.
Special thanks to those doing the fundraiser auctions this week. Wow! I am in tears of joy to know that I can stay here without worry about the bills this week. Thank you. You are all amazing wonderful women whom I hope to get to know better once life resumes at home. Hugs to those who continue to spread the word and pray.
Update 6/12 by Kristina on our behalf
PRAYERS ANSWERED!! Today the big boy started acting like himself again! Hmmm, let me think... what are some things I can tell you? When Jen sat him up for a sec he held his own head up. Then he asked her to give him some medicine. Did you hear that? HE ASKED HER TO GIVE HIM SOME MEDICINE! He actually talked to her. Then she was letting AD (Anna Delma) look at his bear and he didn't like it and asked for it back. The first thing he did at 4 in the morning was scream, MAMA when a nurse came in to bug him. These are things he hasn't done in FIVE WEEKS!!!!!! So when the docs came in and wanted to take him to surgery today, she said NO (do you guys know how obstinate she is?). She told them that because he was so much improved she wanted to wait and see how he does for a day or two. She feels (as is SO true) that our prayers to the ALMIGHTY COOL FATHER THAT LOVES LOVES LOVES THAT BOY have been answered! So the docs have backed off and she and Mark are taking him on a wagon ride to the play room later to give him some fun!!
He still has a fever and a high heart rate and she asks that you guys specifically pray for healing for those things STRONGLY today and through the weekend.
Update for 6/11 by Kristina on our hehalf
Samuel has gone down to have his shunt checked. If it isn't working they will do surgery today (possibly tomorrow) to fix it.
6/9
Just a quick update. There is no leukemia in Samuel's CNS. Praise God! Thank you to those who prayed for us so fervently. We could not be more thankful as we know that Samuel still has a chance at a normal life. Another piece of news is that there is no trace of brain damage according to the levels checked in the CNS. He is better today but it will take a few days to regain normal functions. Our Onc is unsure of the cause of his ondition as the levels are
normal and there is no bacteria in the fluid. But if you ask me, we got a miracle from God. Most miracles hapen and leave all doctors baffled. I believe we got a miracle today. We will be going back to the regular floor and even getting our Executive Suite back as well. We are thrilled, overjoyed and thankful to God. Thank you all, more than you know for your renewed efforts in prayer and intercession for us. Please continue to keep Samuel in your prayers. We want NO MORE trips to surgery or ICU>Love and hugs to all.
UPDATE 6/8
I called to check on Samuel this morning. He slept well last night and was currently watching the Wiggles. Lynne said he was still crying when she came in and looking all around. She did not think he was moving his head or neck yet though. Hopefully he will when we arrive. There is still no test results back from the fluid, either that or she did not want to tell me. THey usually are good about telling you lots of things though so I don't think this is the case. I am off to see my precious baby with the hope that we will leave ICU again so I may stay with him. When we were down on the regular floor, I told him I would not have to leave him again. I hope he doesn't remember that or surely he will think me a liar. When we get home, I am writing letters to the people who can maybe enact some changes in the policies there regarding parents staying.
Thanks so much to all who keep the faith, and pray for Samuel daily. I hope to see a shred of my baby today. Just a little hint of the old Samuel will keep me going today.
UPDATE 6/7
Ugh, how I wish I were typing this with Samuel home. I am so tired right now but wanted to post an update and thanks to all who are praying fervently for Samuel. Thanks to those who signed the guestbook for us and him leaving permanent tracings of your visit to his page. When he comes home, I will read him each and every entry. He always liked to sit on my lap and look at the pictures on the computer.
Today has been another rough day. I feel as if I just got up from being kicked in the stomach just to be kicked again. I am out of breath. I am so thankful to you who stand in the gap for Samuel and my family as I again, take an emotional day here.
While I was in the hospital, I learned of Levi from Kim at Montana's Diaper Store. I feel so out of the loop in the happenings of the WAHM diaper world. Please consider helping this WAHM today. This family faces some huge obstacles today. Our thoughts and prayers are with them as well. As I continue to realize, tragedy is all around us, we just did not know it. Pray for the sick today. Many many children are suffering in horrible ways tonight. Tomorrow, will be 5 weeks for this current hospital stay for Samuel. Somehow it feels like six months.
Over the weekend, Samuel was being weaned off the morphine from his prior surgery. They gave him methadone to compensate. We noticed some peculiar side effects and wondered if it was the methadone. God bless Kim, our nurse who tried to get someone to look at Samuel over the weekend, but no one did. I was incredibly livid and sick last night as I was talked into giving him the methadone which was making him more sick but told that it would be worse on him if he did not get it. This is making the long story really short here. He stopped talking, crying, or getting upset on Friday night. He went literally mute. On Sunday, he would stare at the wall and not look anywhere else. I tried holding him but only hurt him instead. I sat him upright and it was like he had vertigo, he got nauseated, starting trying to throw up from the stomach, but ended up pooping mucus in his pants, filling up his ostomy (poop bag) with gas and almost popping it and finally after several attempts, puked. It was horrible. Kim called several docs to see if ANYONE would come look at him. No one would. She desperately thought we were missing something.
Today, I had a huge list of "issues" to present our Onc. However, after seeing Samuel's condition, he agreed that Samuel was not Samuel. He tried moving his head to see if his eyes would move anywhere but to the left and they did not. He tried to get him to talk, cry, anything but he did not. He did this is such a way that I wanted to yell at him and hit him over the head. My baby's head was thrust all over the place and we don't even know if he was hurting him or not. A dr. from ICU was there to do a sedation/chemo but I had told him upon entry to my room that THAT was NOT happening today until they figure out what is wrong with Samuel. They immediately threw out stroke as a possibility and my heart sank. I told them that these symptoms occured when he started on the Methadone but the ICU doc said he had never seen that with Methadone. This was the day I picked to have Kaysha and Daniel visit since we had been moved down to the regular floor a few days before. They rushed Samuel off to a CAT scan. Mark came back to say it was not good, he had fluid on his brain, but it was not a stroke. THANK GOD! Thank you who pray for him. He was spared that. Our Onc could only think that the leukemia had spread to his CNS at that point and told us that the Neurosurgeon would put in a shunt to drain it off through his stomach somewhere. Apparently that will be a permanent addition to Samuel's body now as well. I am still taking this in.
We had to get the kids over to Aunt Ilyanna's for the afternoon. Daniel was crying, he did not want to go. I needed them out of there so we could make some decisions and they could not go into ICU anyway. Mark took them to lunch and over to Ilyanna's. I packed up our things from our "executive suite" as we called our new double room on the regular floor. Samuel was taken up to ICU shortly thereafter. I had Karla as a nurse today and am so thankful for her. She was so kind to us.
Our Onc told us that if the fluid on Samuel's brain was from a Leukemia relapse, then the chemo protocol would be the most intense and they would also want to do radiation to the head. They did not want to do it on a baby until they were 3 due to brain damage issues. I called my mom and Kristina to get the word out to pray that it would NOT be leukemia. As I write this, I don't know. If you read this tonight, please pray it is NOT.
He went to surgery at 4pm. We went to the waiting room. Our social workers were wonderful to us again today. Samuel is getting to everyone at the hospital. I was able to keep it together until we got to the surgery waiting and lost it. Mark and I talked about quality of life issues. What if we go through this and he is miserable and then does not live? All the while I prayed he would not have leukemia cells, that the surgery would be successful. We agreed that we will NOT allow radiation. Radiation will do damage that will not be restored. Samuel could be brain damaged, have growth issues, or a pluther of other horrible things. He would not thank us for saving his life to grow up like this. And even then we would not have a guarentee he would not relapse again. How much misery should one make a child go through? We will not do it. It was a highly emotional hour there.
The surgeon arrived and told us that it went very well, Samuel was doing good and the fluid was clear with is VERY hopeful. Another Onc was consulted about his case and felt that there was no way he should have relapsed this soon with CNS leukemia. So we are hopeful that something else caused it, just NOT something worse than what we are dealing with now.
Samuel came out of surgery and up to ICU rather than recovery. Abby was his nurse, thankfully. She is so great to us and him. He came up on a ventilator and then they came to flush it or whatever they do, he bit down on the tubing so they could not put it in. The surgeons commented that he actually fought the anesthesia which they took to be a good sign. The neurosurgeon told us that by tomorrow he should be doing well and back to his old self again. We stayed with him unt
