Posted by Scott in
Feelings, on Friday, March 30. 2007 at
Today, as our nurse told me that when kids go home like this, all of the nurses line up and blow bubbles as we leave, I really almost lost it.
I've only felt like that since about noon today. the closer we get to going home today, the stronger the feeling is. I've been thinking about why, and have come up with a few things:
I stayed at the hospital a lot over the course of this treatment, and my coping mechanism for being cooped up was to befriend or become close acquaintances with most of the staff here on the 2nd floor. What this means is that there is a good chance that I won't ever see these people again. All of them that I know by name, they know me by name, that we may joke about their kids, or my kids, or the weather, or what's wrong with the various things on the 2nd floor. I'm deep-down hoping that I never see them again as an in-patient parent with Asher, but also hope that I periodically run into some of them in the outside world. The other day, the hospital posted pictures of every nurse in the central area on the 2nd floor and it really was nice to just see everyone there and have fond, or even not-so-fond memories of things that have happened. On the board there are nurses that we wanted to have every day and there are nurses that we put on our "do not give to me again" list. In any case, all of them that I met had an impact on me in some way. I'm going to miss the chatting I did here and now need to look at how to replace that with people in my community, or at work, or elsewhere.
Over the last few hours, I've really felt, for whatever reason, that there is a finality to this. I mean, sure, we're done with Head Start... medically. We may never be done treating this disease though, so I can't understand why this feels so... final. I know there will be a hundred clinic visits, numerous MRI's, pokes, dressing changes, and everything else for the forseeable future. Every time we have left, previous to this, I always knew that we would be coming back. I could leave the bags packed, or at least leave everything in an organized put-it-back-in-the-bag place. This time, everything needs to find a place. All of the crafts that Asher has made, or had made for him - all need to find a place, or be put in a box, or gotten rid of. All of the toys that Asher has now need to find their spot in our household. Our three kids can now play together daily again, having fun, yelling, laughing, hugging, getting on our nerves, and being the ultimate joy that they really are.
I've also been "not at work" for the better part of 9 months now. I have done some good work while I've worked from home, or the hospital, or even the office. I also have more to accomplish and besides the clinic visits, I'll be going back to the office where I can resume my job the way that I enjoy doing it. Hard-core and intense. There's so much to get accomplished, especially with a new boss and some VP-shuffling going on, that I could bury myself in work for months... I know that I can't do that and probably for the first time, need to KEEP my family first as everything re-integrates itself. I'll probably need to get on a plane once a month. I'll probably be on the road 2 hours a day. I've honestly kinda liked working in this "weird way" that I have been working and for the most part, it's worked out. It's not me though, and going back "into work" will be nice. If there's one thing, that really Steph and I agree on is that you are most effective at your job when you're actually in the office. Neither of us really agrees that you can be effective working remotely and definately your relationships suffer. Being back "at work" more than I've been should allow me to build back any relationships that I've let lag and get things done that I've always intended.
Overall, I guess I really just don't know how to feel. I can't imagine anyone feeling anything after seeing your child be in the hospital for over 170 days. See you child have a 104+ degree temperature for almost a month. See your child have a 6 inch "hole" in their head. I've been able to take most of that "information" and turn into into interesting scientific stuff, all while loving Asher. There really isn't going to be any more scientific happenings to cover up the feelings now, which i think is why they are pouring out, or at least bubbling up on the surface. Those of you reading this that have some sort of technical job may know what I mean if you've also been in somewhat of a similar situation. It was easy for me to grasp onto the acronyms and big words. I enjoyed learning the medical terms and in memorizing the chemo names and what they did. I also tried to keep track of all of the blood cultures, blood counts, tests, diseases, everything that was going on. I even relished being able to pronounce stuff sometimes better than the nurses and doctors when they had never heard of something that was going on with Asher. I guess there comees a point in which you need to turn off your head because you know you just have to "do this and make it to the end" and go back to being more parent than scientist. I guess my heart finally decided to show up and poke thru to the surface today. anyway....
Going back to what Steph posted a few days ago about this really NOT being over and what people are going to be saying to me as I run into them again. "Congrats, your done.." "How's Asher, I haven't kept up.." "I can't imagine what you've been through"... Sometimes I just want to bring a sign with me that says "yes, we're done" and "yes, he's okay right now" and "I'm okay"... All of those things you say to people who really don't care and are just asking because that's what you do. I'll hold in the real comments for those of my friends who really do care. Those ones that have been reading up on the blog every day and have been sending me emails or IM's at work to check in, separate from everything else going on. There's a few people that I work with that have gone through some pretty nasty bouts of cancer-related illness too. some of them still are. I know that I'll never forget those who were there for me, and those who weren't. I still have surprise at some that stepped forward, and sadness at some that didn't. You really, realize when you go through something like this that your true friends separate themselves from your acquaintenances. And the people that truly care bubble to the top.
who knows what this all even says to this pont. ... Lots of ramblings. I'm not even going to go back and read it to correct anything because then it won't be just stream of conscienciousness writing.
From here on forward, I guess I just have the following to say/think/whatever:
I hope and pray that this treatment has done what it was intended to do... effect permanent removal of the cancer from Asher. I hope and pray that we do not ever need to do any long-term treatment of this disease again. I hope and pray that Asher will learn and grow and play and enjoy childhood as children need to do. There will always be bumps in the road of life, and I hope and pray that this speed-bump that we've hit is behind us and, for a while at least, we can pick up speed and turn on the cruise control (at least a little) as we look toward a 4th child in our life and the start of kindergarten. I am so thankful that we've had a world-class facility in the town we live in. I am thankful for the fact that I've had a loving and caring work-support-team behind me. I'm thankful that I have a strong-willed, intelligent wife who has more common sense than the average person and always sets things back into 'reality' for me. I'm thankful that we've had some really great nurses and some really great doctors. I'm thankful for everyone that has helped out with work, food, childcare, etc. I'm also thankfull that this is the year 2007 and not the year 1957, or even 1997 because of all of the significant medical advances that have allowed us to treat Asher under Head Start III that, at least right now, has done it's job in removing any visible signs of cancer from my son.
Posted by Steph in
Feelings, on Thursday, March 29. 2007 at
I took this photo 12/18/06. The wire says, "Hope."
We received two of these figures, one from Krista
and one from Ruth. They are very special to us!
My son has been cancer free since some time after his 3rd round of chemo, so end of September 2006, and it was confirmed with a MRI on 11/30/06. My son's last dose of chemo was 3/10/07, a date I will never forget. My son's chance for a cure was on 3/13/07 when he received a "stem cell rescue." Another big date I will never forget. And, within the next 4 days my son will be able to come home. After 176 days in the hospital, he will be free of long hospital stays.
Ending this treatment phase brings questions to so many people, not just me. For Asher, "What's next?" But in general, we question cancer. Where does it come from? Why does it hit some so young? Why is it cured in some but not all? We question pain and suffering. We question God, "Why the children?" We question life; how short is too short. We ask: Why me? Why my child? Why my parent, or sibling, or grandparent, or aunt/uncle? Why!
It is interesting the different relationships, the different conversations, that I have had with so many people, since telling them my son has cancer. I had an OB appointment yesterday and during our short conversation about Asher, the doctor asked me, "What are the chances the cancer will come back?" Even though I don't want to think about it, I do, and it was the first time, in a face-to-face conversation, that I have had a real honest conversation with someone. Of course, she is a doctor, and doctors know....reality. But I'll tell you, it felt good, to hear her ask me. It was finally confirmation of reality. Something real. My feelings being acknowledged without my even having to say it. It was my first day without tears in about two weeks!
I read about recurrence all the time. Since mid-March, my mind has not let go of Michael's smile.... He had a recurrence of Medulloblastoma (same cancer as Asher) back in October 2006 and had a stem cell rescue the same day as Asher (3/13)...and...he died 5 days later (3/18/07). I'll never forget Michael, even though I didn't know him personally....(links removed)
Medulloblastoma....it can come back. And, it can come back more vicious and strong. One thing I like about Asher being 4-years-old is that he doesn't have to know that it could come back. He gets the freedom, now, other than some appointments at the clinic, some blood draws and transfusions, some MRI's, to be a 4-year-old boy. To make some friends, to start school, to be and do anything he wants, to live, to hope and to dream, big!
One thing Scott and I find ourselves doing is "correcting" people who say to us, "So your son beat it!" which was a recent comment, to Scott, from a construction guy at our home last week. We usually respond, something like, "Well, we hope so. Time will tell." Most oncologists used to say five years after treatment ended that someone was "cured" if the cancer didn't come back. But, when Asher was diagnosed (end of May 2006), they told us that was changed to seven years because they found kids still recurring between 5-7 years. I think the reason Scott and I feel the need to correct people is we don't want people to stop thinking about Asher or praying for Asher's complete recovery.
I know, there are no answers, and I, and anyone else, do not know what the ultimate outcome of all of this will be. Right now I know it means I have more time with my son. How much time, I'll never know. I sure am blessed to have more time though! And, soon, I am hoping I will begin to say Asher had cancer instead of *has*. And, as we bring home Asher in the next day (or week), I know just how blessed I am to still have my son safely in my arms.
Posted by Steph in
Chemo Round 6 & Transplant, Family, Feelings, on Tuesday, February 27. 2007 at
I've decided I'm not scared. I think I'm numb. I know I am tired. I am so thankful Asher's last two rounds of chemo were EASY because I wonder what I'd be feeling if it had been different.
I'm noticing I am questioning a little bit again....is transplant the right thing, the right time....did we do all we could now to cure Asher's brain cancer now....did they take good care of his stem cells and will they thaw okay....
Yeah, I'm asking things I can't answer.
And, I'm tired.
So, if that is all my brain is coming up with, we're good.
And, I'm actually starting to look forward to knowing if our new baby is a boy or girl (hopefully we find out in 4 days) and I'm looking forward to feeling the baby move so I can stop wondering if the baby is okay. I'm looking forward to allowing myself to enjoy life again with less fear. I'm looking forward to moving out of the treatment phase and onto the "oh, please God, don't let the tumor come back" phase. I'm really looking forward to this summer.
Posted by Steph in
Chemo Round 4, Cord Blood, Feelings, on Monday, January 1. 2007 at
We have not done radiation to date. I hope to never do radiation. But, since we have not done it, it is still an option.
Transplant is not a once-in-a-lifetime thing. If Asher's tumor / cancer would come back, and another transplant was recommended, if he did not have enough of his own stem cells we could go to other sources. I've already decided we will be keeping / banking our newest baby's cord blood; baby is due in late July 2007. I'll never forget the four times my OB asked if I wanted to bank Aubree's cord blood and how I said no each time and how I wondered why she was asking so much and why she never asked with Asher or Alexa....I'm not sure how much it costs, but add it to the costs we have to save our son's life. Priceless, as far as I am concerned. The money will come from somewhere.
I think I have come to terms with everything....1 1/2 more days before we begin....till then, only one night left of 2006. A year that has brought a lot of pain, a lot of joy, a lot of miracles, and a lot of love. I am filled with tears as I let go of the 2006 pain and begin 2007 with hope.
Happy New Year to everyone reading!
Posted by Steph in
Chemo Round 4, Family, Feelings, Head Wound, on Wednesday, December 27. 2006 at
The funny part of today was telling Asher when we had to leave for the doctor. He said it was my turn and not his. He said, "I don't have a baby in my tummy." He cracks me up. At the plastic surgeon's office, at one point while the doctor was talking to him, he just turned to me with a HUGE grin on his face and said, "I love you Mommy," and touched my arm so gently. Then he turned to the doctor and said, "Mommy has a baby in her tummy," and patted my belly. He also talked to the doctor about his birthday, holding up four fingers, but again, didn't know what day it is or how long away it is.
I did discuss with the plastic surgeon about weaning Asher from the methadone, telling her he was now down to 1.2mL every 12 hours from 2.5mL that he was getting awhile back. From her point of view it didn't seem to be important for Asher to be totally off the methadone to go back to chemo, but she said going with my gut was the right thing to do. She also said he looked good and didn't look to be in pain or bothered by the weaning. She told me to ask Asher's oncologist what he thought and if it came down to it, the pain team can help wean him or take care of it once he is readmitted, especially since he will be getting the Broviac and will have some pain or discomfort from that surgery.
Schedule from today:
tomorrow, hearing test
this Friday (12/29/06), brain and spine MRI (rescheduled to 10am)
then day after New Years (1/2/07), 9am surgery to remove PICC Line and put in Broviac Line, do spinal tap while he's still under anesthesia, then go to post-op and then right to admit and start getting pumped up with fluids to begin chemo 1/3/07.
Posted by Steph in
Feelings, on Wednesday, December 20. 2006 at
Lately, Asher has spontaneously said, "I love you Mom," and then hugged me while standing or cuddling with me on the couch. He's my boy and I'm really glad I will be able to be by his side for the remainder of his treatment. I guess the nurses and doctors are just going to have to put up with my tears, because they sure do come easily these days. The Zoloft didn't dry them up completely, but it did something. My emotions miss the Zoloft a bit. But, I'm going to try to accept me for who I am. All of me, tears or no tears, extra sensitve, and sometimes crabby. Asher has seen it all and he still loves me. I'm one lucky Momma!
Posted by Steph in
Chemotherapy, Family, Feelings, on Friday, December 8. 2006 at
There's a new life growing inside me. One that I didn't plan. One that I never, honestly, thought was in my future. Scott and I have always had to "try" to have a baby (won't go into details) and what happens? Asher is released from a long hospital stay, and our family is once again complete, at home, under ONE roof....and wa-la. I get pregnant. My baby is 5 1/2 months old. I feel like I'm reliving my days when Asher was 5 1/2 months old, but my life is different now....
I have to admit, though, the day before Thankgiving when I had pregnancy symptoms, I was EXCITED. And, after our Thanksgiving Day feast (cooked and delivered by my AZ moms group friends) when I took a test and saw a faint line, I was EXCITED. And with every test I took, every two days, the darker the line got, the more I got EXCITED. I LOVE children. I LOVE babies. I LOVE being a mom. I know I have always lived with an open heart, open to receive a child from God for any amount of time, for any reason, to nurture and to love, but....isn't this too much? Why did God send me another baby right now? How much nurturing do I have in me? I'm scared about having two sets of children 14 months apart. What's happening? I didn't ask God for another baby right now. Did He not know my prayer request for another baby expired when I gave birth to Aubree and found out Asher had cancer 6 days later? I'm sure God has a reason for this new life. I'm sure this baby has a plan and reason for joining our family. I'm sure I'll figure it out, I'll understand, but not without worry.... Even though I am only six weeks along, I already want nothing to happen to my baby....
I was on Zoloft since Asher started round 3 of chemo. So, almost three months. I had just started to feel better. I still cried but it was okay. I was mellow. I wasn't so angry. I didn't have much anxiety. I slept well. I didn't have nightmares. Well, I quit the Zoloft the day after Thanksgiving, after realizing I was pregnant. Withdrawal wasn't easy for the first 9 days. The joint pain, dizziness, and sadness were the worst, but it is okay now. Except, I am my 'old self', my 'old pregnant self'....moody and irritable and have too much anxiety and having major sleep issues. Scott said last night I just couldn't stop thinking and talking and all he wanted to do was close his eyes and go to sleep. I couldn't. I stay up late 11pm-1am now and wake up early (although that's starting to change where I can't wake up in the morning). I am tired. But, the Zoloft issue is closed and done (for now, for the next 9 months at least). I know it helped, but I can't take anything while pregnant....I just can't take a chance it could hurt my baby.
The issue of chemotherapy....Asher will most likely start up chemo again in 3 weeks. I have worries. Is it airborne? Would I be exposed to it while staying at the hospital 24-7 with Asher? Would it hurt my baby? What if I handle vomit or sweat or diapers....do I have to be wearing blue gloves and gowns the whole time? Can I cuddle by little boy? I've been Googling....searching for articles on the Internet. I'll be talking to Asher's oncologist about it as well when we meet and discuss continuation of Asher's treatment.
Anyway, this is Asher's blog. This is probably the only post you'll see about my pregnancy. I started thinking that maybe someone reading this blog could email me or post comments or something if they know someone or something about being pregnant and being around chemo.... I know the pregnant nurses at PCH are not allowed to hang chemo....but what about pregnant moms of cancer kids? Any advice, thoughts, ? Let me know.
Posted by Steph in
Family, Feelings, Home during Treatment, on Monday, December 4. 2006 at
Posted by Steph in
Chemotherapy, Feelings, Scans, on Thursday, November 30. 2006 at
Posted by Steph in
Feelings, Thank Yous, on Thursday, November 23. 2006 at
Being thankful....it is a feeling in the heart and soul, one that is hard to put into words. Saying "Thank you" doesn't even begin to touch on the feeling in the heart and soul.
My son has cancer and has struggled more in the last six months than I have seen anyone struggle in my 33 years. Yet I am not angry, and, for the most part, I live free of fear. I don't waste a second....I love him and don't take anything for granted.
I am thankful for my son. He has brought so much to my life. Joy, excitement, love, challenge, and more.
I am SO thankful this year!
I am thankful for those that have supported me and reached out to me these last six months. Those that have understood or tried to understand. Those that have read the blog and those that have sent us encouragement through comments and the guestbook. Those that have prayed and offered special masses at their places of worship. Those that have sent cards, stickers, toys, crafts, and stuffed animals to brighten my son's 123 days in the hospital. Those that donated to the yard care fund. Those that have watched my girls when Scott or I couldn't. Those that have brought a meal. Those that have been so generous in sending us cash to help with the hospital bills for now and in the years to come. Those that used their talent to design digital scrapbooking elements and kits to raise funds for Asher. Those that took on part of Scott's work load at Schwab while he was on a six month leave. Those that have been a part of Asher's medical care and treatment, whose talent, expertise, knowledge, diligent care, and compassion have Asher walking and playing in his front yard last night and sleeping in his bed at home right now. Those that have donated to the National Brain Tumor Foundation in Asher's name for hope for the future. Those that have wiped my tears away by listening....THANK YOU!
THANK YOU SO MUCH!
Happy Thanksgiving to you and to your entire family!
Posted by Steph in
Feelings, Home during Treatment, Surgery, on Monday, November 20. 2006 at
Yesterday Asher went with Daddy on an errand, to pick up my Rx med and exchange a gift at Walmart. Before he left he said, "I gotta go get Mommy. [running to me in the other room] Come on Mommy. Let's go. We gotta go to the hospital." He said it with a smile, even some excitement. How could my little boy be happy about going to the hospital....even when he didn't have to go?
Asher played outside again yesterday afternoon (photos of Saturday's playing outside are in the photo journal). When he came in at 6pm it was pretty dark already and he said, "The sun went down. I can't play anymore." So, before he got settled in to playing inside I did his PICC Line dressing change and then his head dressing change. The PICC Line dressing change was a bit challenging. The last three weeks it was always done by someone at the hospital when Asher was still out from profonal. So, this was my first one done at home. He kept waving his arm in the air while I tried to get the tape off. It wasn't even really that stuck anymore and the adhesive remover did a good job too, but he HATES the tape. He yelled and cried a bucket full of tears. Then he sat perfectly still while I washed the Line and put the new tape on. And, he sat so well for his head dressing change, with his chin down to his chest and everything. The most difficult part of taking the gauze off is the top part, it seems to dry the fastest, I suppose gravity is the reason for that.
So, off to clinic here soon. They open at 9am and I go without an appointment (just going to be "fit" in).
Posted by Steph in
Digital Scrapbooking, Feelings, Thank Yous, on Friday, November 3. 2006 at
Through all the pain of Asher's diagnosis and treatment, people have touched our lives in ways that you can't know unless you have been through something like this. The love and prayers....emails, cards, and toys....the emotional support, a place to vent (here in this blog) and know I'll get an encouraging note in return....supporting our walk for the National Brain Tumor Foundation....fundraising to help pay for hospital bills.... It means a lot to me knowing that what I share in this blog means I share my son with you. I have heard some people have stopped reading the blog because they cry too much, but I have also received a few notes saying Asher is an inspiration. I love that Asher can touch lives, all over the world. Some day, I know Asher is going to understand what it means to reach out to others from the example you have shown to him. You are all an inspiration. I am so thankful to you, for being here with us during this difficult journey.
Anyway, enough with the emotional outpouring and on to two thank yous that I wanted to make public:
I want to say THANK YOU, here, to each of the moms in my AZ moms group (AMU) who are planning to share a dish for a Thanksgiving feast for us. We aren't sure if Asher will be back in the hospital or still at home, but my friends are already planning the meal and will bring it to us whereever we may be. We are so lucky to have you as supporters, and as you know, we have a lot to be thankful for this year! THANK YOU for thinking of us and including us in your Thanksgiving!
I also want to say THANK YOU, to Sara Carling and her Creative Team. Sara is an amazing digital designer, designing kits for digital scrapbookers at Scrapbookgraphics. She and her team have adopted Asher for Christmas! So generous of her!! Her 2006 Christmas Kit is called "Share in the Season" ("share" is an anagram of "Asher") and is beautiful!! Check out these layouts using the "Share in the Season" kit. THANK YOU, again, Sara! I know many new people will be praying for Asher this holiday season.
Posted by Steph in
Development, Family, Feelings, Head Wound, Hospital Stay, on Wednesday, October 25. 2006 at
As for being at the hospital as much as I have....it is OK. I miss the girls, a lot, but my heart tells me I need to physically be here with my little boy right now. Even after being here almost three weeks straight, I'm still getting the comments, "Oh, Scott gets a break today" and "Oh, I didn't expect to see you; I usually see Dad," but I am also starting to receive some support here, from other moms, from nurses, from seeing the smiles of other kids, from seeing how the kids fight and live... Asher's nurse that was here the night I heard "life threatening" and was crying in his room while waiting for him to come back from surgery, has always given me a little side-hug when she sees me now. When I walk the halls with Asher, everyone says "HI" to him, even a Dad of a little girl that was just diagnosed with bone cancer last Thursday. Tonight, in the hall by the cafeteria, a grandma of a little girl with leukemia stopped me with, "How's Asher?" Her granddaughter found a match for her bone marrow transplant, which will be 11/3. I've been keeping to myself a lot, because somehow I think that will keep me safer, safer from hurt or something, who knows, but now I know I need to break through that more. I still cry. I cry about the pain my child is in, cry from fear, cry at seeing other children going through pain, but I know somewhere inside I'm growing and it will all mean more to me someday. Ah, I'm rambling, now, as I do most of the time (see my long posts every day), but I just wanted to record my thoughts today to see how they change in time, as I already know they have changed a lot because before I didn't want to talk to anyone about anything while I was at the hospital and now I'm okay talking to some people....
Posted by Steph in
Chemo Round 3, Family, Feelings, on Sunday, September 24. 2006 at
Posted by Scott in
Chemo Round 3, Feelings, Hospital Stay, Infection, on Saturday, September 23. 2006 at
We have a new nurse tonight. Not really a "Newly-crowned" Nurse, but an I-just-arrived-at-PCH-2-days-ago nurse... A Traveller. He's a nice enough guy, quite a talker. But, I'm not sure I trust him.
Every other paragraph that he speaks appears to contain the phrase "I've been doing this a long time", but it appears as though he doesn't know how to pronounce any of the drug names of any of the stuff that he's hanging for Asher tonight and appears to have difficulty putting in syringes of drugs in a syringe pump and getting them clamped in appropriately.
(Not that it matters that you can pronounce these drug names, but you'd think that if "you'd been doing this a long time" that you'd pronounce it like everyone else, whether right or not.)
Maybe it bothers me that he's really taking his time doing things. He reads, then re-reads the pharmacy directions on how long the drug runs, normally says it aloud, and then pauses while he appears to try and figure out which button to push, or which dial to spin. Maybe he's just ultra-careful, and if so, that's good.
Tonight, Asher is getting a new fungal antibiotic Amphocil, which contains Amphotericin, which has been known to cause fever while it's being given over 2-4 hours. I've read that it can also give you shaking chills. I'm not sure that I trust such a new med to a nurse who's been in the oncology ward for 2 days. Even though the charge nurse is helping along the new guy when she can, he's still in charge.
I think I'll just stay up and watch how Asher reacts myself.
UPDATE: 03:30 - Asher's reacting well to the new medicine. fever holding steady at 38C and not going up, which is good. The new guy is pretty good. My first impression turns out to be mostly wrong. He seems very competent, but "new" to the surroundings which appears to have caused his early jitters/reactions to what was going on. Hopefully the med will go in the rest of the way okay and we'll have an event free night. time to sleep