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 until 8pm and had to leave to get the kids. That was horrible to leave him alone. He had not woke up completely from the surgery yet. He did hold Makr's hand and mine. But Anna was whining most of the time so I could not stay by myself.
I just called Lynne, who is another awesome nurse in ICU to check on him. He is up, off the ventilator and watching Blue's Clues. She said he cried when she changed his diaper. He has not cried in two days so that is a great sign. His eyes are moving again and were when we left. I know I will not sleep well tonight and am anxious to get back tomorrow.
Apparently, the ICU floor has a bunch of infectious disease on it. Chicken Pox, Meningitis, Pertusis and Pnemonia. Please say special prayer that Samuel is cared for especially carefully tonight and tomorrow. And that we all stay healthy, especially Anna as we return tomorrow. There was talk of him going back down to the regular floor again if he is doing well, but after going down and then going back to ICU twice now, I don't think they will be so quick to release us. I hope they do. Leaving him tears me up tonight.
Thank you, thank you to all who wrote me such lovely notes of prayer and support tonight. God is with Samuel. I don't understand why we are on this roller coaster ride but God will be glorified as He turns this tragedy into healing and health. Please pray that God continue to keep Samuel close to Him, and free from seizures and any permanent damage from this pressure build up. Pray that the cause of the pressure be some easy thing to deal with, and NOT cancer.
With love and thanks to all....
Updatre for 6/7 by Kristina on our behalf
Samuel has fluid on his brain. He started yesterday thrashing around on the bed and became non-responsive. The neurosurgeon is taking him down ASAP to do a spinal tap. If the fluid is without leukemia cells, they will put a drain (shunt) in to get the fluid off. If it has leukemia cells in it Samuel's chances at beating this thing decrease DRAMATICALLY. They will still put the shunt in to drain the fluid, but they will then have to step up the chemo a ton and start radiation on his brain. They never to radiation on kids under two and he is just barely two. It will be pretty devastating to him and Jen says they will only do the radiation as a last ditch effort.
UPDATE for 6/4
We are out of ICU. Back into the executive suite, as we so fondly call the double room we now reside in. They won't put anyone else in so we have a HUGE room. It is like coming home in a way since we had
this room when we first stayed here. We are happy today, which seems odd, but it is nice to be down on the regular floor and have the nurses fight over who cares for Sam today.
This computer sucks so this is short. I cannot access my AOL mail at all today. We are in room 693 bed two for those who need to know.
Sam is doing well. They stopped one antibiotic and took out the NG tube yesterday. He is also okay to start drinking and foods again, though I doubt he will. But the option is there. Pray for a continued speedy recovery.
Thanks to all, our love to you and yours...today is surely a happy day.
UPDATE for 6/1
Sunday was a rough day for Samuel. Two days after having his colon, cecum and appendix removed, he had a lot of pain. After Saturday I was so hoping he would be better on Sunday but was disappointed. My mom came in that day to give Mark a day at home with the kids. We ended up staying until after 8pm to be sure he was sleeping and that we got a good nurse. We ended up with Tineal who was there for me the night his lung collapsed so I felt he was in good hands.
Monday he had a better day, which was so SO nice. FInally, the fevers disappeared and I got to hold him for an hour and a half. He was so used to hurting that I think he braced himself for more pain but when he was in my arms, he slept very comfortably. The holiday weekend passed by SLOWLY. All our favorite staff members were off and time just seemed to drag.
Today was a really good day for Samuel. We came in and his vital signs were the best I have seen in four weeks of being there. We have now spent 16 days our of 28 in the ICU. We asked when we can go down to the regular floor and were told possibly tomorrow if he continues to do so well. His blood counts are approaching normal levels now and the fevers have been gone for almost 48 hours so all are hopeful that he is on the way to recovery from all these ailmesnts that have kept us here on this roller coaster. I know his lungs are clear because when I held him previously to this week, I could feel fluid going through his back when he would breathe. Now I only felt air. What a relief. His last chest tube was removed yesterday and he is doing very well today. The ICU doc did not want him to leave too early since he is a hard child to predict and has thrown some "curve balls" their way. I certainly don't want to go back downstairs just to turn around at 3am and come back up. But ICU is a pain. There is no bathroom on the ward that parents can use so you have to leave the ward to go, and I, of course have to go A LOT! You also cannot eat in the room, also a pain since we never want to leave Samuel alone. Worst of all, you cannot stay with them overnight, well, you can...but they don't make it comfortable. There is no bed/chair like daowstairs. And some staff we have encountered seem to frown on the parents being there at night period. ICU is also a very sad place to be. You see the worst of the worst kids coming in. Everyone is ciritcal and a lot of times it seems like the kids/babies take turns crying and being miserable. I always ask staff if there is a mother in with that baby who is screaming. Another sad trend I see is many small babies being left alone all day with NO parental attention. There is an 8 month old boy next to Samuel who is on a ventilator. I wonder what his parents did this holiday weekend since they did not bother to visit him. Our nice nurse Patty got him up one day last week and put him in his swing, played with him and turned him on a TV show to watch. Other than that, no one bothered. What a shame. I want to go cuddle him, but of course, I cannot. Pray for this little boy as you read this, pray his mother realize that her place is with her child.
I got one letter in the last day or so from someone who knew a lady who was cured of Leukemia. It was sad to me because this child's mother did not hang around long after the diagnosis. Apparently she could not handle it, had other issues, whatever. The girl is now a lady and is cancer free and doing great. I am so glad to know this. But, I can tall you from my experience, babies of ANY age need Mama. They don't want Dad a lot of times and they don't care about anyone else except Mom. Samuel wanted nothing to do with his Dad for the first four weeks of our diagnosis. This is why I never left him at the hospital. Just in the last two weeks did he accept his dad as comfort and then and only then did I agree to go home and take a break. This would be so much easier if I did not have TWO babies who need comfort solely from Mom. A lot of the time I was alone and had to comfort them both together, which was not easy. Please remember this Moms, your babies need you, your children need you when they are afraid for their lives. Dad, brother and sister do not cut it, grandparents do not cut it. It kills me to leave my child in the care of another right now. It makes me sick. I wake up with a headache that vanishes when I get to his bedside. I cannot imagine leaving my child there for days and trusting these people to his care. Thanks so much to those who have donated to us to make this possible. That helps so much, but I would stay regardless.
We hope to go downstairs tomorrow assuming the night and morning go well, he continues to improve. I pray we go down because he notices us gone now and I hate it. Seems like the concensus is that we would stay on the regular floor another week after getting there. Could we be home in a week or so? That seems like such a dream, could this actually happen? Samuel still is hardly talking, just wimpering. I hope to see signs of his old self soon. I pray he is not so traumatized by this that he reverts inward. It is so hard to be the one he trusts and feel like I am failing him.
We learned how to change the poop bag today. No big deal really. His incision is about five inches so is huge. He will have several scars that he will grow up and not know how they came about I am sure. Marked talked with Dr. Holland, the surgeon today. He told Mark that the Pathologist looked at the cecum and colon and said it was the absolute worst case of Typhlitis he had ever seen and wondered what the heck happened. The Infection Specialist told us that the culture of the abcess grew Sudomonus as did the fluid in the abdomen that was cultured two weeks earlier and he felt that the colon actually ruptured more than two weeks ago and possibly closed up or something. So the problems they found could have been going on for much longer than two weeks. Ugh! At least the doc in ICU this week realizes how much he has suffered. These people still describe him as remarkable.
Our Onc is already talking of starting Chemo again Friday. Still draggin his feet on the Vincristine. I don't think it will be an issue for Friday but it is part of the treatment and we will have to decide soon. We have not set anything in stone as of yet though. It is like walking the tightrope again. We don't know for sure if he is in remission, but if he is, don't want to jepordize it by waiting too long to resume treatment. At the same time, I want my son back, healthy and strong. As it is now, he went into the hospital crawling, and may not even be able to crawl when he comes home. He has lost over 6 pounds, a lot of muscle mass and chemo gives them severe joint pains so he probably won't want to walk. I just want a normal 2 year old, is that too much to ask? Even for just a day?
When I hear the word happy, I think of Samuel. We always called him a "happy happy boy". Please pray he will return to that and not be so traumatized that this personality triat is gone. Pray for Kaysha and Daniel, they are so done with traveling again and if Samuel goes back downstairs, I will stay with him until he comes home, which could be at least a week. I pray he continue to be remarkable and get out sooner.
Thanks to all for their enormous hearts. I will be sending thanks to you special people tonight. I got some wonderful notes of hope and inspiration tonight and I want to share. Thank you to those who continue to write, call and care, but most of all pray. God hears. Special thanks to those who are in our local area doing charity drives on our behalf. I pray God bless you each and every one reading this now. Thank you. I received this prayer from a customer/friend, I pray if for all who read this now...
"Father, I ask You to bless my friends, relatives and email buddies reading this right now. Show them a new revelation of Your love and power. Holy Spirit, I ask You to minister to their spirit at this very moment. Where there is pain, give them Your peace and mercy. Where there is self-doubt, release a renewed confidence through Your grace. Bless their homes, families, finances, their goings and their comings. In Jesus' precious name. Amen."
"God had His hand in me reading your website this morning, and I am praying for Samuel,for you and your family.
I will bring my husband back to also read with me when he gets home from work, and pray and ask God if there is anything we can do to help you. I just want you to know God is bringing seemingly complete strangers to pray for this child He loves so much. "
"I think if the world was fair,
Mommies and Daddies who have to go through this would get all their
expenses paid for the duration of the illness, and the child who had to
endure the illness would get free ice cream forever, free college, and
a very nice house to live in when he grows up!"
I wish the above was the case for ALL the sick kids I have encountered. I don't think I can say it enough, please pray for sick children today. There is SO much suffering. Thank you to those who continue to remember Samuel and check in on us daily. I prepare myself tonight to go back to live at the hospital until Smauel comes home. I pray that my next update be a huge praise report and we can all celebrate his homecoming. You have all touched my heart in so many ways tonight. Thank you. With love....
Update for 5/29AM
Getting ready to go back in. Talked to Jesus today. He said Samuel had a good night and was resting comfortably this morning. Laying in his bed like the picture above, crossing his leg and covering his eyes with his arm. We do NOT feel better today. Thanks to Kristina for her quick call and prayers and reassurance. I will stay at the apartment tonight so Mark can have Sunday at home with the kids.
Thanks to all of you who share your childhood memories of tramatic illness and remind me that you only remember loving care, no pain and suffering. I am sure to need counseling for the suffering I have had to witness both for my son and others who continue to suffer in the hospital. Pray for the sick today.
UPDATE THIS PM
Notes from some today below, thank you.
"Father, You are the God of LIFE and Samuel is struggling with death. Even as we speak, parts of his body are dying. Lord, I pray that you will restore life to him. I humbly ask that You would restore his health and allow him to be healed. Whether by miracle, by medicine, or by his own body learning to fight off the infections, Lord, I ask for healing and I give YOU alone all the glory. "
"Today is about surviving. Focus on that. And soon enough, your thoughts will grow into thriving instead of just surving. Throw away the whys and how comes and why nots because answers won't make any of this easier to overcome. Put all your energy into hope, not despair. Believe in God's power to heal, not only the body, but the heart and the soul."
"Please know that Samuel is still a perfect little boy. God has made him in his honor and makes nothing less than perfect."
Thanks to those whose notes were so timely today. Samuel had a very restful day. In fact, I don't even know if he knew we were there. We were both very relieved to know he had a good night, did not toss and turn as he has previously. He slept today with minimal pain control which continues to surprise the docs. Another doc came in to be surprised he was not on a ventilator. He is still running a fever but the blood cultures from yesterday were all negative for new bacteria. Hopefully the fevers will subside. He got more packed red blood cells today to just give him a boost. His WBC was 57k and his platelets were over 155k so these looked great. We picked him up to change his bed after taking care of his bum rash and he hardly wimpered and did not beg to be put back down as he has previously. We pray he will just recover now, no new infections, no other surprises. The other shoe has dropped, so to speak, the surgeon looked at all the other organs and said they were fine. His liver, kidney and bladder functions continue to be normal. HIs bum looks a lot better today now that he is not pooping acidy mucus. Now he just needs to sleep it off. He appeared comfortable for the most part considering what he has been through. I ended up coming home. We both felt beat all day but improved as the day wore on and he continued to be comfortable. I could not bear to stay alone again. I need to sleep in my own bed. I don't even think he will notice we left.
SInce today was such a quiet day, I spent it reading through a book sent to me by Pam C, thank you! I may get a firm grasp on reality yet. Or maybe I will NOT want to kill my Onc, okay, I really don't want to kill him exactly but I just have a hard time understanding why one would knowingly go into a practice where you poison people and call it cure. This is not a fair thing to say, Mark keeps reminding me he wants to save lives, not kill people, but it is so hard to remember that sometimes when you are dealing with side effects. They get to go home every night. They are not suffering. Our social worders left last night and said they felt guilty leaving us for the long weekend. Anyway, the book Pam C. sent me is about the pioneers of Leukemia treatment. These were the ones who were passionate about giving these kids a chance to live. Apparently, back in the 1950's if your child got Leukemia, they would just put a sign on your hospital room door and NOT return because your child was going to die, no question. You were not even told unless a nurse told you. Your child just died, painfully. One of the first poineers would see the signs and go in to tell the families and offer a blood transfusion and morphine to the child, which gave the family a day or so say goodbye and allowd the child to die with minimal suffering. At least we are NOT there. That would be horrible. It actually struck a chord with me because when Anna was hospitalized, someone just stuck a quarentine sign on the door but never bothered to let us know what was wrong. We were left to wonder for 18 hours. The only reason we found anything out was because we got irate with the staff. This pioneer went on to treat a lot of childhood cancers even though others told him to stop because it was useless and he would just go to the poorhouse. That gave me some perspective today. Samuel would be DEAD today without the chemo meds he received. They saved his life. That is SO unbelievably hard to understand right now. It is one thing to write down on paper, one thing to tell someone, but it is so overwhelming to know that in a few short days of his diagnosis, he would have died without treatments. Still, it is my hope that my Dr. will be a pioneer enough to NEVER have another patient lose his entire colon. Pray he pays a bit more attention to details of each patient as a person, not a protocol. Adjust treatments as needed. Let my child be the last to suffer that. Pray he remembers that we are more than just a number. We are people who stay long after they go home to their plush homes, fancy cars, etc. We are still suffering while they play all weekend. I told one of our nurses that if I had to spend any more holidays here I would scream. She told me that once we got Samuel home, that every day would be a holiday. Ain't that the truth.
Our loads are heavy. When we sleep we dream of beeping IV alarms, and our son in torment. We want him home, healthy, happy, smiling for the camera. I feel badly for all the children who suffered greatly and died in the name of a cure for Leukemia today. Many many had to die to give our children a chance to live today. It is all so heartbreaking to think of. God bless the families today living without these precious children. Comfort them.
Thanks to those who comfort us today in words, prayers and financially so that we can go to bed tonight with a little less of a load to bear. Thank you to all who care for Samuel tonight, who cry with us, who pray for us, who bear the load we bear, who are mothers and fathers and know that this could very easily be them. We thank you. God bless you.
Update from 5/28
We are so tired, so hurt, so down today. Samuel lost his colon, his cecum and his appendix today. They drained his abscess last night but our surgeon, Dr. Holland, whom we really like was in early today to let us know that surgery was our only option at this point. Unfortunately with the chemo that is to come, they feared that he would only have a 10% chance of the puncture in the cecum clearing up. We do not have weeks and weeks to wait because the Leukemia may come back and then we would have that to deal with as well. We were initially told he would go in and look and we would probably end up with an ileoscopy and 5 months of a poop bag (for lack of a better word) off his abdomen. We were NOT happy but resolved to this. Samuel has holes and tubes from every orfice right now so it was so hard to see him off again to surgery for a bigger wound that will take forever to heal. Meanwhile, we called for a meeting with our Oncologist to find out what the plan is at this point since we have had every possible complication and are now off the chemo protocol. I am NOT happy, did I mention that? I could throw up as I write this. Kristina reminds me I need to be happy he is alive and all I can think is that he was PERFECT at birth, now he is missing organs permantly damaged by chemo. Anyway, during the meeting, Dr. Holland came in to give report about the surgery. He told us that the colon was so bad that it was all removed as well as the cecum and the appendix. The meeting consisted of Mark and I, my mom, three of our social workers and our Onc Dr. The whole room was stunned. Our doctor commented that he had never had a patent whose entire colon was removed. The meeting was basically over for me then. Anna napped all day and woke up just in time for the meeting so was fussing the whole time. I was between mad and bawling most of it. Pretty much all that came out of it was that while Samuel was still considered high risk, they were going to switch to the low risk protocol. I don't know if he will ever get Vincristine again since we all believe that that drug ruined his colon. Dr. Holland told us it literally fell apart in his hands as he was removing it. We are lucky we had this done. If it had ruptured in his body, it would have been very very bad. So for the last two weeks, again, he has suffered. I am sick. I thought I was low the other day, but I am beyond that even. Dr. Holland assured us that his quality of life will still be good, though there will be things we will have to do differently. The poop bag will be there at least 6 months. I hope and pray that this is the end of his suffering and he can now get better. Draining the abscess gave him instant relief last night and he slept better than he has ever in the ICU and his fevers disappeared. One of the ICU docs came in after the surgery was done and asked when he was going. He was astounded to know that he was done. He (again) could not believe how good he looked and that he was not on a ventilator. In fact, Samuel's O2 was removed entirely before we left for the night. Jesus was with him as his RN so I knew he was in good hands though it was SO HARD to go again. But I feel sick, and I did not want to be alone tonight. My Dad says save his life and worry about the rest on the downslide but that is so hard to do when you are losing organs in the first month.
Mark is so tired today. He was so stunned at the news as we all were yet tried to comfort me while he was dying inside too. Trying to see the bright side tonight is just incredibly hard. Every decision we make is similar to trying to decide whether to jump off a cliff or slit your throat. Staying at the hospital makes you feel hopeless, like you will never get home. Coming home makes you hopeful you will someday make it. If i had to go through this without Mark, I would be in a very bad place right now.
I want to thank everyone who responded to our new page for Samuel. Your notes of encouragement were incredible! We are so thankful for each and every note, and all the prayers being offered up on our behalf. Thank you. We also want to thank you for your donations to us at this time. You are all incredible and I hope you who gave to us will read this and know we are so very thankful and pray God's blessing on you. I don't have time to write you all personally, and I am sorry for that. Please know that any notes, thoughts and prayers, and financial support are so much appreciated right now.
Many thanks to my mom for being there agonizing, praying and keeping the faith, reminding me to do so as well. Pray she is able to make it financially as she has missed a lot of work to be with us.
Special thanks to Kristina for being my support even though hearing from me is not easy some days. She is golden, a true gem of a friend, I could not do this without your prayers and encouragement and honesty. Your knowledge of the medical field is keeping me going, preparing me for the next day. Thanks for being up when I am down.
Special thanks to Monika for sharing her own battle with cancer and knowledge with me today. Helping me to realize that people live without their colons and are okay. Taking time from her day to help a stranger means so very much. Thank you for caring.
Thanks to all who sent notes that they will pray and not forget Samuel. I took a break from prayer today to be emotional instead knowing that you are bearing the burden of prayer for me. Thank you.
Thank you to General Surgeon Shannon who took time from her day to write me today and share some knowledge as well as offer future support. That means more than you know.
Thanks to my new friend Kasey, your prayers work. Pray I feel better tomorrow.
Thanks to Keila for knowing what to get Samuel. He actually played for 20 minutes today, the first time in 3.5 weeks. This was very very emotional. Thanks, more than you know. You are an incredible friend I want to get to know more.
Thanks to RT Jodi, for caring about Sam today and taking the time to come up to visit. Thanks to IVT Sharon for telling me God has a plan for Sam and praying for him daily. Telling me that by the time he is 15, he will probably be able to get a colon transplant if he needs one. Sharon saved Sam's original PICC line when it clogged up so that he would not have to be poked again. Thanks to our social workers/Child Life Specialists, Mary and Tammy for your help today. It helps to know we are more than just a number with you all.
Thanks to those who are rallying efforts to help us in any way they can.
We have had some incredible staff at the hospital. In PICU, Patty, Mike, Abbey and Jesus are awesome. Pray a special blessing on them as you read this. These people apologize to me before leaving if they did not feel they made Samuel comfortable enough. These are the people who helped him the most. We have Jesus tonight but do not know who will care for Sam tomorrow. Pray it be someone good. When we are downstairs on the regular Onc floor, we love Katie, Karla, Olimpia, Barb, Kim, Mary, and Kathy. These ladies are superb, treat you like family, come to find us in ICU to see how we are and daily commiserate with us. Pray special blessings on these ladies. Thanks to Jody, floor supervisor who treats us like gold. Thanks to the charge nurse whose name I forgot, who took care of us the night Samuel's lung collapsed. This lady is the best, and loved on Anna at 2am as well.
Okay, I feel a little better being thankful to others. I am sure there are more, I just forgot.
Praying tomorrow is a better day for us all. I can live with this knowing it will help him. I am not patient, I need to see immediate good. I want my boy back, home, fat, happy and talking and playing like he used to. Not suffering day in day out and all I can do is nothing.
2nd Update 5/28 by Kristina on our hehalf
Samuel didn't go into surgery until 1:00 PM today. The surgeon was shocked at what he saw. His large intestine was decimated. They had to remove almost the entire thing. They were able to leave a small portion and that means he won't have to have the bag forever. This is the reason he has had all of these fevers and sepsis and problems. He has been getting good care, he just wasn't showing the typical symptoms of such a severe problem. Since he was so close to death when he was first diagnosed, they put him in the high risk category and had to give him MASSIVE amounts of chemo to save his life. Well, they did save his life, but they destroyed his gut. So when you look at it that way, it sucks... but he is alive. The other good thing is that his pain (other than the incisional pain for the first day or two post-op) will be GONE! What it boils down to is that this kid was handling his pain so well that they didn't suspect he had this much going on in his tummy. Shows ya what kind of kid he is. He is one of those kids that will play football and be able to get hit and not flinch. I mean, THIS KID CAN TAKE SOME PAIN! It will be fun to watch him grow up and take spills and cuts and knocks that would floor other kids, and he will probably just dust himself off and keep playing.
So I sound pretty upbeat, but that's because it's not MY baby with the big hole in his abdomen. Jen doesn't sound at all peppy. She is actually rather overwhelmed and emotional as you can imagine. If a nurse she trusts comes in for the night shift, she will go home. I think when she goes in tomorrow morning, she'll see the old Samuel. Or at least more of the old Samuel.
Keila, she wanted me to tell you (and she was weepy as she told me) that when Samuel opened the toy you sent, he actually got excited and played with it for 20 MINUTES! That is HUGE! Special thanks to you.
I don't know Daniel and Kaysha's sizes, but I would guess his to be 8 - 10 and hers to be the same. You know how it doesn't matter if kids t-shirts are a little too big. Now, for a fitted shirt, I would probably get Kaysha a 7. Jen might be home tonight, and if so, she can of course give you a better estimate of their sizes. I have never met this family, so I am just guessing from ages and pictures.
Update for 5/28 by Kristina on our behalf
The surgery Jen mentioned is to go into his abdomen and try to drain a part of his intestine that has a large, pussy area that is causing him a great deal of pain, and is very infected. The surgery was last night. If they weren't able to drain it, they would have to remove that section of intestine and give Samuel a colostomy. That means they would make a permanent opening in his abdominal wall and you would attach a bag to it on the outside, and he would poop into the bag. He would have that for at least 5 months while his intestines heal and rest. It sounds bad, but if he gets through the surgery okay, he will feel so much better and his gut will get to rest. I haven't talked to her yet this morning, but will update you guys as to his condition after I do.
Staci, the reason they can't give him breast milk through the tube is because the nutrition he gets goes right into his vein, not into his digestive system. He has a permanent port under the wall of his chest that they poke the needle in and the stuff flows into a vein near his heart.
Update for 5/27
Mark just called to LMK that they found an abscess in Samuel's cecum. They are wheeling him down to try to drain it now. If that is unsuccessful, they will surgically remove it. Please pray it will drain. This is possibly the cause of his fevers and pain today. Surgery is not a good option for him in his condition right now. However the abscess has to go one way or the other. Mark is exhausted. Pray for his strength.
I am leaving. Taking the orders that are done and will ship from the hospital instead.
Thanks to all. Much love. Until I am home again, I will be thinking of you all...........
Update for 5/26
Samuel had another good night, meaning he slept comfortably and there were no new problems to add to the existing ones. Mark arrived at the hospital around 8am and he was sleeping comfortably.
Yesterday Samuel had a busy day with the new chest tube, and then a blood transfusion which resulted in the IV line being pulled since it started bleeding everywhere. We have been adamant about him not being further traumatized so he was put under light sedation and had a new PICC line done in his leg. They actually put in a double line there. We had lots of trouble with the PICC in the arm before but since this is not our main line, it was okay for now. These "should" last a few months and not need removed like a traditional IV which have to be redone every few days give or take. The new PICC is working fine. I don't know if he got new blood or not. The transfusion in process went bad and had to be tossed. They also reaccessed his port line while he was sedated and added back the ng tube to drain his tummy again since they felt it was getting hard again. There is a new PICU dr. on this week and she is the first one who actually looked at his horrible diaper rash and decided to have another specialist come look to determine if anything could be done. Now he is getting sitz baths a few times a day to soak it. It is really bad. It looks like a raspberry. He had a chest Xray and it looked good. He also had an abdominal xray and it showed improvement in his intestines.
Today, the Infection Specialist came in on his day off to check Samuel. His stomach is softer which is really good, AND he heard actually bowel sounds. This is really really good. He even mentioned that perhaps we are on the downhill slide.
I had Mark talk to our Oncologist for awhile yesterday since so many diagnosises have been passed around to find out what we actually have. Apparently the Sepsis is gone now. Another really good thing. But we are still dealing with the Ileus and Typhlitis. Ileus is where the guts shut down and I am not sure where they came up with Typhlitis so will be talking with the dr further. They are holding off on the chemo for the next week, maybe two. Gee, isn't that nice? (sarcasm for those who don't know me well enough to get it) Seems they have killed everything off including trying to kill off my baby so it is nice of them to finally back off. Our Onc feels 95% sure that his Leukemia is in remission based on his blood counts climbing and no evidence of Leukemia cells. I believe they are going to clamp off the chest tubes today and see how that goes.
But for now, Samuel is actually comfortably sleeping and that is a blessing to us all.
Praise God that prayers are being answered today. Thanks to those who keep us in prayer.
Some have wondered if I am mad at God right now or feel like I should be, or are surprised that I am not. Let us all remember that good things come from God and bad things come from the devil. How could I be angry at my only hope right now? God is our hope, our strength. I know that His medicine causes no side effects and is perfect. I pray only good, no bad. I believe in only a good outcome. I pray all our Dr's and nurses be led by God whether they know it or not. God continues to amaze our dr's through Samuel and they know we are trusting in Him. Let us all continue to pray these things in agreement today and praise Him as He continues to keep Samuel in His grip. God has a great plan for Samuel's life, maybe to find out why this horrible disease strikes little children and babies. Please pray for the sick today, many of whom you don't know. Being in the hospital has shown me a new world I never knew existed. When you donate $ or items to your local hospital, please do not think that these things go unappreciated by the recipients. We received many gifts at the hospital that were donated by people whom we will never know and were incredibly touched. Seeing your baby get lego's, a toy truck, a teddy bear and a quilt with a birthday card made by the staff on his birthday touched me in a way that I cannot even describe. Seeing him get excited about these things and actually want to sit up and play with them for a little while did my soul good. If you want to do something for us today, please consider a tangible donation to your local childrens hospital.
Thank you to you all, so much more than words can express.
UPDATE 5/25
I am feeling a bit better today after resting overnight. I was operating on 3 hours sleep yesterday so sleeping has made an improvement on my attitude.
Samuel had a good night, meaning, he slept without a lot of tossing and turning and crying. Apparently some ICU nurses let him have nights of restlessness which really made me mad. I would arrive at 7am to him crying and feel horrible and yet they would not allow you to stay. Mark just called me to say that they are putting another tube in his left lung, so now he will have both sides draining. The left was the side with the pneumonia previously. They are planning to clamp off the right to see how it does today. He actually seems more comfortable with the lungs draining so that is nice to see after many days of total misery.
His blood count is good today. He is actually making platelets for the first time since this started which is really good. We were having transfusions daily and now they went from a count of 120k after transfusion to 60k the next day to 90k the day after that to 141k today so that is just incredible. His white blood is 50k so his immune system is in fight mode. His red blood is still a bit low but is the last thing to come back according to dr's. These are all really good things to be thankful for.
His sepses, or organ infections are seeming to slowly resolve and he is still doing small poops. His ng tube to drain his tummy has been gone for two days now and he is not vomiting so that is great as well. We have incredible nursing staff today, which figures since I am not there but is good for Samuel and Mark.
Our dr's still say that he should be a lot worse off considering his many problems now but that he looks "really good considering". I know that is due to all the fervent prayers going up in his behalf. Thank you. Please continue to pray that his body repair and rebuild itself and that all medicines be sanctified to do only good in his body. We believe it is God's will that we be healed and live abundantly and claim that over Samuel today. Samuel is continuing to surprise the staff with his resilience in coping with all issues facing him at present. I guess even though to us he looks so awful and is feeling so badly, to them, he should be looking and feeling a lot worse.
I am off to do something now, who knows what.
UPDATE 5/24
I am at a loss for words as I write this, which for me, is really strange. Thanks so much for all the dipes that keep coming in. You are have really gone above and beyond for us right now. I am thankful that a trip to the store for dipes is not among my list of things to do. Some have sent $ and we are thankful for that as well. Mark and I have not worked for 33 days now. Yes we are counting the days. We would not be able to stay with Samuel if not for your help. As we have seen at the hospital, a lot of parents don't make it a priority to stay with their babies, so so sad. Thank you to all for your gifts to my children and continued prayers. Thanks for not forgetting Samuel. He is so very sick right now. I can hardly bear to be here and call Mark every hour. Anna is done with the hospital and being in ICU is just too hard to keep her quiet, keep Samuel consoled and keep my sanity at this point. My children do not want to leave home to go to so and so's house anymore. So a few days of me here will be good for them I hope. Anna can cry freely here as can we all. I am going to cut this short for now because I am just at an all time low I think. I feel so helpless here, so helpless there too. My heart is so touched by all your kindness to us. Thanks so much to all who are praying, please keep it up. If I had a dollar for everytime the dr's come in and tell me about what is wrong with Samuel and then say that for everything he has wrong, he still looks really good, I would be rich. Without your prayers, I am sure we would not be getting these words which I guess they feel are encouraging. To say that this has been hard is such an understatement. If you are familiar with Shania Twain's song, "It Only Hurts When I Breathe" then you will understand how I am at this moment. I hold on to the hope that God must have an awesome plan for Samuel's life or the devil would not be trying so hard to spoil it. Thank you to all who sent me notes to come home to. As far as what I want/need.........I can't even think right now, I am sorry to say. Everything sent to us has been a blessing and appreciated more than you know. I guess I just revert back to prayers as the main need now. I want Samuel to be Mr. Pooper again, the boy he was before Leukemia.
Love and thanks from us here.......
Update 5/24 by Kristina on our behalf
He's back in the ICU, this time one of his lungs filled with fluid and he had to get a chest tube put in. 2 or 3 days in the ICU at least. Jen has finally reached her limit and has agreed to go home for 2 or 3 days. After 3 weeks there, she needs it. Mark will stay at Samuel's bedside in Jen's absence. She could use all of our encouraging words about why she shouldn't feel guilty about leaving and spending time with the other kids. Let's have some messages on her computer for her when she gets home, okay guys!
She wanted me to say that anyone who wants to come over to her house and bring food, please just show up whenever. You don't need to call first or anything, just COME! She will be stranded without transportation for a while and would love to have something good to eat for her and the kids. I guess several of you live near enough to do that and have offered in the past. She says, "BRING IT ON!" You know the girl LOVES to eat!
She will send a note out herself when she gets home and I will fade out until she goes back in to the hospital in a few days.
Update 5/24 by Kristina on our behalf
Friday evening Jen and I prayed for Samuel over the phone while she laid her hands on him and I stretched out my hand northwest towards Washington. That, coupled with all the other prayers from you guys have HELPED!! Yesterday, Samuel started pooping!!! I didn't get a chance to tell you, but the docs said Friday evening that part of his intestine looked like it had died, and that was why he was so swollen and not pooping. It looked like they were probably going to have to do major surgery to remove that part of his intestine, and give him a colostomy (an opening in his abdominal wall with a changeable plastic bag attached that he would poop in)! Jen was naturally freaking out! He wouldn't have done well in surgery AND if things would have gone O.K., he would have had to wear the thing for 5 months and then have more surgery to fix it. So when I say he started pooping yesterday (I mean REALLY pooping, living up to his nickname), you can see why that is such a cause to celebrate!! Praise JESUS and prayers answered in His name!! †So now his stomach is nice and soft instead of hard and the little guy is in such less pain! His white blood cell count (that indicates his leukemia status) is growing and growing, and even his red blood cells and some other blood components are doing awesome! Jen thinks they may get out of the ICU Monday!
She just received a TON of diapers! She is SO thrilled! He is going through them so fast it is just a huge blessing for her to know she is not going to run out anytime soon and you know how hard it is to plop down money for those things. She wanted to express her sincere thanks to all of you who are keeping super man stocked up on "butts" (as you know, that's what this weirdo family calls diapers).
She wanted me to thank Kristen for the Burts Bees (forgive me if I have the product name wrong, you know product recognition isn't my strong suit) baby lotion and baby wipes. After describing the whole pooping thing to you, you can see why the wipes were such a timely gift. The lotion is awesome because she said his skin is just raw. Morphine makes you itchy and he gets a lot of it and his skin is just a mess.
Also thanks to Heidi. She sent a box with stuff for Samuel but what was cool was that she sent stuff for the other kids. They FREAKED out! Kaysha and Daniel are really having a hard time. It was so cool for them to get something special. And she wanted me to tell you the outfit for Anna fit her perfectly.
She didn't have time to individually thank all of the diaper senders, but you know who you are and so does she, and it means the world to her.
She wanted me to specifically thank you guys for your prayers for her baby. She got to hold him yesterday. Smell him, feel him up close, murmur to him. It's hard because he hurts so much he didn't want her to hold him, but she managed to give him some lovins just for a minute or two and she was just awash with gratitude for all of you who devote so much of your precious time praying for her son. She asks that you keep it up, please.
This comes from me - please pray for her patience with the hospital staff. Some of these people drive her crazy. If you know Jen at all, you know how hard it is for her to deal with people who are incompetent. She needs to be that way, and that is how she is assuring that Samuel is getting the best care. But I worry about her blood pressure, ya know?! She'll laugh at me when she gets around to reading this.
Have a good Sunday. I am off to church to sing some worship songs and praise Him for the work he has done for this little guy. Jen is amazing in that she is not questioning God or whe this is happening to her guy. She just praises Him for the good things and prays for understanding for the bad things. She surprises me. She sets an example of faith I don't know if I would be so good at following. I would hope I would be so full of faith, but when I imagine Corina in that bed writhing around...
Hopefully nothing bad happened overnight and I will only have more good news to give to you guys in my next update.
Later that night, Samuel is OUT of the ICU
Update 5/21 by Kristina on our behalf
Samuel is still in ICU. He has sepsis, which is an all-over infection of basically every system of the body. He isn't pooping, and it is his gut/digestive system which seem to be the most affected. They keep doing Cat Scans, ultrasounds, and they even tapped some of the fluid off of his abdomen with a needle and syringe for testing, but nothing too conclusive. He is WAY blocked up and they can't give him an enema or a suppository because he is prone to bleeding with his leukemia (his body has to have it's blood clotting component replaced to his blood nearly every day or so - they are giving him platelets). If they cause any trauma there, it would be very bad. They are, however thinking of doing laproscopic abdominal surgery where they make three small (1/2 inch) incisions in the abdomen and stick a camera in there to see what is going on. He is also having heart rate and blood pressure problems. They did a cardiac ultrasound to look at his heart and the cardiologist said his heart is perfect, which made Jen feel great. He is still being fed through the IV and is on four different antibiotics. He is on constant sedation through a drip into his IV so he is pretty snowed. They also give him morphine from time to time when he needs it. He hurts a whole lot. His stomach is HUGELY swollen, as are his little privates and his legs and arms are like sticks. His white blood cell count is rising better than ever before, his heart is looking strong, so that and the fact that his lungs are holding up and he is not on a ventilator (breathing machine) are the great things. Basically, it looks like his leukemia is possibly getting under control, but this body-wide infection has him in a pretty scary position. He will be in the ICU at least until early next week (if he improves) and then when he moves to the floor, it will mean 2 or 3 weeks up there.
All Jen needs is money and prayers. I don't have any money for her (I've never even sent her a penny), and I know most of you don't either, so just keep praying. Right now Mark is with Jen at the hospital from 10 to 7 every day to give her a break, help with Anna and keep Jen company and love her, and then he goes home with the two older ones each night and tries to love them enough for dad AND mom overnight. Jen can't keep Anna in the ICU to sleep over night, so she is forced to leave Samuel alone from about 11 or 12 at night when he is good and snowed (hospital talk for drugged), while she and Anna are driven over to an apartment provided to them free from the hospital. Sometimes during the day when Mark is there, Jen and Anna go nap at that apartment which helps a lot (four hours yesterday - a miracle!).
Update 5/17 by Kristina on our behalf
O.K. guys, it doesn't look good. I don't know what's going on for sure... I talked to Jen yesterday and they didn't get to go home - instead, Samuel's kidneys stopped working and he started puking. They put an NG tube up his nose and into his stomach to drain his gut, and he had some relief from that. She said he was VERY swollen because he was retaining water because his kidneys weren't making urine. So I have been calling off and on all day and have been getting no answer so finally I called the nurses station and found out they had moved him to the ICU. Definately not good. I left a message and if I hear from her I will let you know. Pray, pray, pray. Pray that he is not suffering, that he has good pain control. Pray for Jen and Mark that they continue to be a support for each other and don't take their frustrations out on each other. Pray whatever you want to, just pray.
UPDATE 5/15
Just a quick update and thanks from me. We are still at the hospital. We were set to go home today but Samuel spiked a fever last night, again, and now has a very high resting heart rate of 160-170's. I have been up since 2am and wanted to send out a prayer request and take a little break from beeping machines not that Mark is here.
We are not sure what the problem is and I am VERY disappointed as today is day 11 for us here. We think he may be constipated, poor baby but have not seen our dr as of yet. Please pray for him today. His numbers are up and had this NOT have happened we would be going home. I pray it is just something simple/dumb such as constipation and will be resolved soon. It is such an emotional nightmare. Thanks to all who keep us in prayers and have sent gifts and dipes for Samuel. Thanks to all who have done the auctions and sent donations. We could not both be here if not for you. Mark has not worked for over 3 weeks now. Again, thanks for the prayers, I am sure I would be crazy without them and knowing you all care so much.
Hug your little ones today for you never know what tomorrow brings. There are so many sick kids here it just breaks my heart. I walk down the hall and pray for each child behind the door when I am able.
Love and hugs from us here.
Update 5/11PM by Kristina on our hehalf
Hi for the third time today! Well, things look a lot brighter this evening than this morning. It is so up and down, up and down. Turns out he enjoyed his shower. Jen took him in there and he finally let her hold him for a while. It felt so good to her to have him close to her for a little while. She said she even stood him up for a sec with support. Mark laid him down in a wagon and he enjoyed being pulled around for a whole hour! Yea! AND he actually smiled a time or two when Mark bonked him into walls, furniture, etc., to be funny. Jen says he looks very funny bald. His heart rate has come up and this afternoon's x-ray looks better. He drank 4 oz of breast milk today too. Jen hopes they can go home soon and she thinks he will be more likely to eat in his own, familiar environment.
Update 5/11AM by Kristina on our behalf
Samuel is not improving. He is having trouble keeping his heart rate up and Jen is really worried about that, although the staff doesn't appear to be. The steroids have caused his abdomen to swell so much that his belly button is now an 'outie'. He has lost a lot of weight and has not eaten or had anything to drink for two days. He is refusing even his chocolate breast milk. He hasn't walked or even sat up since they have been in the hospital. Jen is despairing because they have been in for so long and he is not getting better. I prayed with her this morning via phone, but she needs all of you to pray fervently for her and her precious, hurting boy from wherever you are across the country.
Today they are changing out his lines (his IV stuff) and she and Mark are going to take that opportunity to shave his head (his hair falls out unevenly, in chunks) and get him in the shower. This will be very uncomfortable for him, but he will feel better when it is all over.
She needs more diapers. She really likes the 7th Heaven brand, size extra large. Baby Anna is using cloth and Jen wants to continue with that. Jen says, "Samuel is burning through his butts." Translation: Samuel is using a lot of diapers. She says "butts" instead of diapers. If he needs a clean one, she says, "Hey, somebody bring me a new butt for Samuel." She's such a nut.
Update 5/8 by Kristina on our behalf
Jen asked me to update y'all on Samuel's progress. He is doing better! His neutraphils (a blood component) are up to half of their normal level. That is quite a big deal. Most kids with leukemia don't have a rise in neutraphils until after the first month of chemo. The doctors aren't sure why this has happened for him but are wondering if the breast milk that Jen is pumping for him is the reason. They hypothesize that the power punch she is providing him with the 8 to 16 oz. he is drinking a day is giving him the boost he needs. Also, since Jen was exposed to his pneumonia, but did not GET the pneumonia, she has antibodies to it and she is giving those antibodies to Samuel through her breast milk. So, as you can imagine, she is WAY fired up about that. It makes her feel so great to be able to do something that is benefiting him in such a HUGE way. The docs told her to keep on doing what she is doing, because he is definitely improving. They even said that it is possible that they may be sent home to finish the antibiotics on Monday. However, he is still heavily dependent on his oxygen, so that may not happen.
Samuel still won't let Jen hold or touch him but she did get him in a wagon yesterday for a trip down to x-ray and she said that he smiled a time or two. This morning he is really grouchy. I could hear him in the background being a big 'ol grump. I much preferred hearing that to what I heard from him last night which was painful moaning.
Pain control is still a bit of a problem, but Jen is on top of it and although they have not restarted the morphine, ibuprofen is helping more than the Tylenol did - and she is cool with that.
She bought a new breast pump yesterday that is really powerful. She said, "I can squeeze out 8 ounces really quick with no problem."
She is really comforted by all that is being done for Samuel by you guys, both by prayer and financial support - diapers, etc. Mark has not worked this last week. The friend that was staying with her to help her had to go home and the older kids have been having a hard time this week without their mama (especially Daniel). The kids got to come see them at the hospital this week and that helped. Let's remember to pray for the older kids who really are just babies themselves in the grand scheme of things and are really suffering without mom around. Let's pray that Mark continues to do a terrific job handling all the mom and dad roles in the family and lift him up for that and for continued patience and support with his sweet wife. The two of them are really doing great through all of this as far as supporting each other. Every time I talk to him or talk to Jen while he is there, they are laughing or teasing each other and giving each other a hard time. That's awesome, isn't it!!!
Update 5/6 by Kristina on our behalf
Samuel now has a staph infection in his blood. Yesterday's x-ray showed his pneumonia had worsened and after they found the infection in his blood, that explained why. Hopefully his x-ray today will be better. They have started a specific antibiotic for this blood infection which should help him feel better. He is having a load of pain, though. He doesn't want Jen to pick him up and hold him, and he doesn't even want her to touch him. They finally started giving him morphine yesterday and he got some peaceful sleep and pain relief from that. Jen was so grateful to see him sleep without hurting. The docs said they could be in the hospital for 10 days to two weeks. They might consider letting them go home and finishing up the antibiotics there with Mark administering them. He doesn't know if he is up to that, but they will think about it when Samuel gets to the point that he is well enough to go home.
In spite of all of this, she was laughing from time to time on the phone. She was excited because her new labels with the new logo on them had arrived and Mark brought them to her to see. She also had some pouches they were readying for shipment and that made her feel good to get that accomplished.
She needs us guys. Don't ever feel like prayers are not enough. That's all she gets from me, too. Don't discount the power of the Lord, Jesus Christ.
Blessings to you all - you guys ROCK!!!!!
P.S.
I just talked to her right now (update) and they have stopped the morphine and she is MAD because his pain is uncontrolled again. He has had a fever all night of 102 and she is pretty freaked out right now.
UPDATE 5/4
Just a quick note to LYK that we are back at Mary Bridge again. Samuel had a rough night and some alarming symptoms have brought us back to Mary Bridge to stay. He has pnemonia and is very sick, lathargic even. Please keep us in prayers. Mark is leaving soon for home. April is here staying with my children so they are fine. Anna is with me and will stay until we are released. We will be here a few days minimum to a week or so. I got tons done biz wise last night and Mark will finish up snapping pouches and we will address and ship them from here tomorrow as time permits.
Please pray for us tonight.
Hugs and love....
Jen and family.
UPDATE 5/3
Just a quick note to you tonight.
Several things have arrived in my PO box and/or doorstep. I want to send you individual thank you's and have done a lot tonight but time does not permit a lot of e-mails so I am sending another group thanks here. To those who sent auction $, bid on auctions, or just sent $, thank you. To those who sent Samuel lots of diapers, his bottom and I thank you. To those of you whom I do not know who send gifts of support in to us, thank you, more than you know.
To say that things are rough here does not even cover it. This is without a doubt the most horrible experience I have had to endure. I am so thankful to all of you for your prayers and gifts to us. I am absolutely humbled and tearful. I have walked around aimlessly for the last few days that we have been home trying to come to some sort of terms with leukemia but I have just decided it is like the grieving process. Samuel is very sick and it is so extremely difficult to be positive when I see him crawling, not walking because he hurts. I cannot get more than five feet away from him and he is screaming for me. All he wants to do is hold my hair and have me sing Twinkle Twinkle Little Star to him. To those who continue to send me notes of encouragement, thank you. I don't think there can be too many. I may not always have time to respond but I do read them and really appreciate your friendship and support more than you know. Thanks to all who continue to pray for us.
I have finally got into the sewing room to finish up some loose ends. Lots of my auction packages will ship mid week. Mark has lots of snapping to do tomorrow and Wed. Then we are back to regular orders which I hope to bang out quickly. Thanks to all for their patience as we work through this. Please check the OrderStatus page for your name if you have a current order. I have updated it and think I have everyone there. If you are not there, please e-mail me asap.
With hugs to all from us here....
UPDATE 5/1
Just a quick note of thanks to all the "raving fans" out there who sent us tons of diapers. THANK YOU ALL! Just so you know, while we like anonymous gifts, we would love to thank you personally, so fess up, LOL!
Thanks to those who remembered us in prayers yesterday. Samuel did have surgery but many things happened that delayed it. Yesterday was such a horrible day for us that today it just seems like a nightmare I don't want to remember. I think I will need some serious counseling if I have to endure more days like that. Mark promises me that that will be the last horrible day but I am not so sure. My emotions really play off of Samuel's and let's just say that yesterday was a really sad day. Thank you to those who continue to pray for us. The surgery was a success and all in all, the dr's say that Samuel is a high risk patient but is responding to treatment like they would expect a low risk patient to do. That is good news. I keep praying that they will say it is all a mistake but that seems unlikely. Anyway he is resting now and I will try to do something around here now.
THANKS FROM 4/29
To all who are participating in these, thank you so much! I am amazed and humbled to see how many have participated, and many of you I don't know so I hope you are on this list getting this message. I must admit I feel a bit overwhelmed and I guess undeserving for lack of a better word, of such an outpouring of support. Words do not express my gratitude in this matter. I pray that God blesses you all a hundred fold, those who are bidding as well as those who are taking the time to make/offer these items. I know how precious time is and appreciate those who stay up late at night to do something extra when they should be sleeping. I can tell you from personal experience, when I have needed cash fast in the past, I always just started giving things away, or offering steal of a deals to customers in need and have always been rewarded with 10 folds of people paying full price for items. I pray the same happens to you who have taken the time and effort or are spending hard earned $ on these.
Thank you, thank you, thank you!
UPDATE FROM 4/28
Again, thanks so much for your well wishes and prayers. Samuel slept very well last night and woke up happy today. His treatment went well though I was terribly grouchy/emotional. I was so glad to have brought my pouch along. He was able to be in my pouch and receive all the IV meds. He had a spinal tap today as well which just about broke my heart though he did not suffer. They have a great sedation medication now that is fast acting but it is still heart wrenching. Thanks so much to those of you praying for my strength. It took all I had to take him in today and not run as far as I could from the center. Looks like we will be home today and tomorrow but will go in early Friday for the surgery. He is resting now. I snapped a pic of him in the hammock for the homepage so people will know who they are praying for. So far so good with the chemo and I prayed the entire time I watched them drain that poison into his body. Thank you all for your prayers as well, I know they are making all the difference.
UPDATE 4/27
Just wanted to take a moment to write to you. We are home now. I have not been home in a week and as you can imagine my mailbox is full of well wishes and prayers, not to mention my snail mail box, and some wonderful ladies who came to see us at Mary Bridge. I have not even went through it all yet but will as the day goes on. I don't know if I can express my gratitude and thanks to all of you for your prayers, thoughts and generosity to our family at this time. Thanks just does not seem to cover it. As I read through your messages, it just brings more tears but joyful ones at least. How does a person say thanks so that you all really feel it in an e-mail? It just is not possible. As I have always said, you are all so wonderful, I know I have the best customers/friends that a WAHM can have. We are so touched by your outpouring of support to us, I cannot express it. If you were here, I would just hug you all since gestures say so much more than words. This has been a very emotional week as you might expect.
Samuel was diagnosed with Leukemia on the 20th, our 8th wedding anniversary. He had his second birthday in the hospital on the 21st. It was very emotional for us. If we had not have taken him in when we did he would not be alive today. The process of getting him admitted and blood tested, etc was very traumatic to us and him. My once happy loving baby is now very fearful of strangers. That is unless you were one of the ladies who came to visit him with baby in tow. His blood was literally bleeding inside his body. He was admitted in critical condition with a white blood cell count of 265,000. Normal is 10,000 or so. There were a barrage of things that could have happened to him and they were very fearful of many many things that did not happen due to your constant prayers. They first told us we would be there a month. Then after two days they said minimum two weeks. In the last few days the main cancer specialist has been dumbfounded with his progress and response to treatment. They could not find a reason to keep us past today. We know that this is because you all have prayed for him and spread the word to others to pray as well. I honestly pray that they will come in and tell us that the diagnosis is a mistake and he does not have cancer and we will not have to put him through three years of chemo treatment. He is coping very well considering and again the dr's are scratching their heads in disbelief. The hospital staff was phenomenal and treated us like royalty. On Samuel's birthday they brought him gifts and made him a card. I could not be more impressed with that and as you can imagine, after Anna's ordeal, our expectations were very low.
May I just say that I did read some posts from people feeling helpless. Please don't. What we honestly need more than anything you can send or give is your prayer support for our family and especially for Samuel. People ask what we need/want. It is so hard for me to say because I know that we are all moms who pinch our pennies and I don't want to be a burden on you or in your minds. I guess it is just hard to ask for things and hard to accept things....maybe I am still in denial of our situation. If I can ask you for something it would be your prayers. Your prayers are working. The dr's are calling him their very special boy. Please do not stop praying. For those who ask what we need, I would say prayer. Prayer works. If we have to go through this illness, I would like it to be with a child that proves that miracles do happen. I believe that all things work together for good and God would not have us go though this unless it was to help someone else in the process. I hold onto that as I cry now. Samuel does have some pain issues but has had many happy moments in the last few days which make it easier to swallow. If I could ask you to pray that the chemo treatments will be effective with NO side effects for Samuel, that is what I would ask. I don't want to see my baby have to be sick from the so called cure for cancer. I have very mixed feelings about putting toxins into my baby to cure his disease. It goes against everything that screams sensible to me. May we all pray that God will sanctify these toxins that they would not harm him while ridding his body of the cancer. I know that God is hearing all your prayers so if we can come into agreement on this that would be the best thing you can do for our family now. My older children are coping well and don't really realize the magnitude of the illness. Anna was a very good baby who was allowed to stay with me even though it was against all the hospital policies. Even when Samuel was in the ICU she was allowed to stay.
This is getting longer than I wanted it to so I will close for now as I have much to do. I will unpack tonight and clean up a few loose ends. We are off very early in the morn for another chemo/spinal tap and the like. Then home again until Thursday when I will be packing up again as he will probably be admitted to the hospital for another blood transfusion and then surgery for a port to be installed into his chest on Friday morning. This will help his life at home to be more normal. Right now he has a PICC line hanging out of his arm which has been nothing but misery for us all so he cannot take a bath or do other things that for us are normal. Please keep him in your prayers for these things to come. He is so traumatized by this whole thing and as his mother who is supposed to protect him from all evil, it is very hard to allow people to poke and prod him.
Please love on your children tonight. You never know what tomorrow may bring. Often times children appear healthy when they are not. We were very lucky to see some external symptoms on Samuel's body that screamed take him in or we would have lost him.
It seems silly to say thanks to you all again but thanks! I hope you can feel it in your hearts. With hugs and love from us here.
