I've never been much of a runner. I would much rather go for a long walk, do aerobics classes or lift weights. Haven't done much of any of the above in the past year or so (or 3). However, my 4th year of medical school, Brian and I ran a half-marathon with some of our friends. I thought I was going to die at first. Couldn't go half a mile without stopping. By the end, I could easily run 4 miles and 8 miles felt pretty good. I developed a knee injury about a week before the race and wasn't able to run my best. The last mile, though I knew the end was in sight, was painful. I hobbled part of the way there but managed to run across the finish line.
Brian ran a full marathon a few years before that. Part of the race required him to run out and back so that you could see others who were 3-4 miles in front of you getting close to the end. I think this was mile 20 or 21. This is where many hit the wall and feel like there is no way they can go another 5 or 6 miles to the finish. This was the most difficult part of the race for him. When he made it across the finish line, he nearly collapsed. I congratulated him and made sure he didn't sit down because I knew there was no way I could get him back up if he did...But I digress..
This process with Reese has been a marathon. A long intense marathon...though many have battled cancer much much longer. We started with a 9 hour surgery, followed by an 8 day ICU stay, numerous complications, other surgeries, etc followed by 5 cycles of inpatient chemo lasting around 3 weeks each. Now the stem cell transplant cycle. Reese has spent more of her months fighting cancer than not. Brian and I have spent more nights in the hospital with her than at home...and Charlotte and Philip have spent many hours away from us.
During the other cycles, I was always worried that something (infection, complications, etc) was going to prevent her from moving onto the next step (the next cycle for instance) in a timely manner. You have to keep pounding cancer so it doesn't have time to figure out how to fight back. It's time sensitive. This cycle feels different because there is no cycle to follow it. There is no next treatment (planned). Don't get me wrong. We could still have issues after discharge. Reese's immune system will be very weak and we could be readmitted for fever or other issues. She will need transfusions for awhile, etc. But there is something encouraging to know that everything we do from here on out will be to make her get better and feel better (no more dropping her counts and supporting her until she recovers). I'm very tired and my legs feel like limp noodles. My bum knee is really hurting. I hear the crowds cheering me on and it doesn't energize me sometimes. But we are past mile 20/21 and there is an end in sight. So in some ways, though Reese feels like absolute poo today, this is easier than some of her past cycles when it felt like we would never finish.
The hardest thing about the race is that the finish line could move back. We could have to do more for her. Right now, I try not to think about that. I need to focus on our goal and be excited about the tangible victories. The end of this treatment phase is going to be my mental "treatment marathon." We are about to enter "recovery phase marathon" where we work on getting her immune system back in shape, milestones, eating, and getting rid of central lines and gtubes.
There are several families that I follow on blogs or caring bridge etc who have done or are doing battle with cancer. I read about their journeys and pray for them. I have met some families here but not really gone too deep with any of them. It's a little too much for me because it would be too hard to ride the emotional roller coaster with them. I have to stay focused on Reese right now. I do pray for the others though. Last night, as Reese was waking up so frequently, I checked one of the blogs I read in the middle of the night while I was waiting to see if Reese was going to settle down. This little girl who has been battling leukemia for 2.5 years is very sick in the ICU. She has had a difficult, hard fight and last night had to be resuscitated. I remember Reese going to the ICU during her first cycle and how it felt to stand in the hallway and watch them wheel my baby by me on the way to a stat CT scan. And how God held us up when we wanted to sink into the floor. This mom described a similar scenario of God's peace in the midst of these circumstances. I was so thankful that I woke up and read the blog because I was able to cry for her and pray for her in the middle of the night last night when I'm sure she needed it most. From the comments on her blog, it sounds like lots of people were also up last night doing the same thing. Praying so hard for this vivacious girl named Piper!
So I'm tired but I feel like we are at the 23rd mile. I'm a little nervous because we are still in the thick of things with cycle 6. Something could still go wrong. Reese still feels miserable but we are still hobbling/running to the finish of "treatment marathon." It will feel good to finish but I know that if I sit down, I may not get up again....so we push ahead and don't give ourselves that option.
Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart. Hebrews 12:1-3
But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matthew 6:33-34
Friday, March 30, 2012
Wednesday, March 28, 2012
Kids are awesome
I wish I could adequately describe the range of emotions I have felt in the last 24 hours. They ranged from anxiety, fear, sadness, nostalgia to joy, exhilaration, light-heartedness. For a fairly even-keel (if only on the outside) person, I was pretty much exhausted from sheer emotion by the end of the day. I was not on my "take-a-photo-and-document-everything" A-game yesterday and missed my opportunity to photograph the 20mL syringe of cells that is going to repopulate my daughter's bone marrow. Why? Because I was too busy propping myself/lying across Reese's bed trying to make sure she didn't budge so that not one drop of cells would get lost. My heart was pounding the whole time. I was watching the monitor. I was watching her. I was watching the clock. I was watching the other people in the room to make sure they weren't concerned about anything I might have missed (ha, like that's possible...) I was keeping myself steady so I didn't hit the ground. I kept tearing up and fighting it back. Kept not looking at Brian so I wouldn't start bawling my eyes out. (I'm sure the medical staff would have thought that I was nuts because they do this ALL the time) When something has to be done for your child or your family, you just DO it, no matter how hard. The mama bear (or papa) comes out and it's ALL about protecting and caring for your child. Though we aren't DONE yet fighting for Reese, yesterday was definitely a milestone and I was able to breathe a small sigh of relief (briefly) before we start this next period of challenge.
After Reese woke up (no anesthesia was given but she decided to take a nap through the whole thing), she stretched and looked up at us with a smile. She doesn't really understand how difficult her life has been the past 7 months. She is one of the happiest babies I have ever seen. She is great at soothing herself and smiles ALL the time. She smiles more now than she did before her diagnosis. I can't help but think that God did that for her crazy, worn-out mommy. One of those, "thank you God for hearing my prayers and knowing what I really need" moments. Everyone notices her smile, from the nurses/docs caring for her to the technician who came to fix her monitor today. His quote: "We need to put a smile meter on this monitor but then yours would always be going off."
Charlotte and Philip have handled this time incredibly well considering. Per report of our awesome babysitter, Charlotte was at home this morning getting her baby doll "Reese" ready to go to the hospital. She consistently talks about Reese and asks about her and tells others that her baby sister is "so sick and sore" in the hospital. Philip is walking most of the time and climbing on EVERYTHING. He is a good sleeper and an expert eater (this with only 2 teeth and 2 more peeking through).
It is really fun to see Charlotte and Philip interact. They love each other and rough each other up (Charlotte does more damage for the time being but I expect this will change within a year or two). They laugh at each other and want to do what the other is doing. Sometimes when I see them doing things together, I get sad because Reese has missed out on a lot of the "firsts" with Philip. He sat, crawled, walked, ate, took a bath in the big tub, played at the children's museum, etc without her. When I dreamed of what life with my twins would look like, I didn't picture separation. However, Charlotte and Philip have forged a deep bond and I'm extremely thankful that Philip was there with Charlotte (instead of her being the only child left at home while mommy and daddy are away). Charlotte, who is not always gentle and has a bit of a tornado-like personality, is incredibly sweet and caring for Reese. When adults are timid to touch/interact with Reese because of her apparent fragility, Charlotte runs right up to her when she cries, sings her a song, gives her a toy or just touches her hand. It's amazing.
It has been a long 7 months and Reese still has to go through this engraftment period and recover counts. She still has to be on isolation and we still have to get our house into pristine condition/keep it there while her immune system recovers. We still have to do MRIs every 3 months or more to make sure that there is no tumor growing back. We may have to do battle with it again (but I PRAY not). We will always worry if Reese has a headache or loses her balance...or any other number of things that could signal a problem. We still have to do rehab so that she can catch up on all her milestones that have been stunted while lying in a hospital bed or feeling sick or having major brain surgery.
What makes me cry more than anything? The vision of all 3 of my kids playing together. The vision of Reese and Philip's first day of kindergarten together. The vision of poor Philip surviving with two sisters to push him around. The vision of Reese with hair (though she is pretty cute without it ;). The vision of Reese wearing cute dresses like her big sister (instead of sleepers with buttons so that we can hide her lines from her). The vision of Reese taking a bath with the other 2. The vision of "normalcy" for us all.
The doctors have explained that Reese may have long-term issues from what she has endured. She may not do as well in school. She may not hear as well. She may have attention-deficit. Her permanent teeth may be malformed or not come in at all. She may not be able to have children. I know that these things can/will be difficult to explain to her later, but then I remind myself that if I am explaining these things...We have WON because she is with us.
I have read lots of things from cancer survivors or families who have survived (some with and sadly some without the cancer patient) the war with cancer. A consistent theme is that the cancer made them see and appreciate the small things in life, the things that you take for granted. Raising 3 kids so close in age is HARD work and I'm thankful for some perspective to appreciate what I've been given.
I'm praying that I will be crying A LOT (happy, deep JOYFUL crying) in the next year as I watch Reese return home, recover and do all those things above and MORE. I pray that God would use our lives to glorify Him. He has certainly been tender to us in the midst of our circumstances.
"Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God's love has been poured out into our hearts through the Holy Spirit, who has been given to us." Romans 5:3-5
After Reese woke up (no anesthesia was given but she decided to take a nap through the whole thing), she stretched and looked up at us with a smile. She doesn't really understand how difficult her life has been the past 7 months. She is one of the happiest babies I have ever seen. She is great at soothing herself and smiles ALL the time. She smiles more now than she did before her diagnosis. I can't help but think that God did that for her crazy, worn-out mommy. One of those, "thank you God for hearing my prayers and knowing what I really need" moments. Everyone notices her smile, from the nurses/docs caring for her to the technician who came to fix her monitor today. His quote: "We need to put a smile meter on this monitor but then yours would always be going off."
Charlotte and Philip have handled this time incredibly well considering. Per report of our awesome babysitter, Charlotte was at home this morning getting her baby doll "Reese" ready to go to the hospital. She consistently talks about Reese and asks about her and tells others that her baby sister is "so sick and sore" in the hospital. Philip is walking most of the time and climbing on EVERYTHING. He is a good sleeper and an expert eater (this with only 2 teeth and 2 more peeking through).
It is really fun to see Charlotte and Philip interact. They love each other and rough each other up (Charlotte does more damage for the time being but I expect this will change within a year or two). They laugh at each other and want to do what the other is doing. Sometimes when I see them doing things together, I get sad because Reese has missed out on a lot of the "firsts" with Philip. He sat, crawled, walked, ate, took a bath in the big tub, played at the children's museum, etc without her. When I dreamed of what life with my twins would look like, I didn't picture separation. However, Charlotte and Philip have forged a deep bond and I'm extremely thankful that Philip was there with Charlotte (instead of her being the only child left at home while mommy and daddy are away). Charlotte, who is not always gentle and has a bit of a tornado-like personality, is incredibly sweet and caring for Reese. When adults are timid to touch/interact with Reese because of her apparent fragility, Charlotte runs right up to her when she cries, sings her a song, gives her a toy or just touches her hand. It's amazing.
It has been a long 7 months and Reese still has to go through this engraftment period and recover counts. She still has to be on isolation and we still have to get our house into pristine condition/keep it there while her immune system recovers. We still have to do MRIs every 3 months or more to make sure that there is no tumor growing back. We may have to do battle with it again (but I PRAY not). We will always worry if Reese has a headache or loses her balance...or any other number of things that could signal a problem. We still have to do rehab so that she can catch up on all her milestones that have been stunted while lying in a hospital bed or feeling sick or having major brain surgery.
What makes me cry more than anything? The vision of all 3 of my kids playing together. The vision of Reese and Philip's first day of kindergarten together. The vision of poor Philip surviving with two sisters to push him around. The vision of Reese with hair (though she is pretty cute without it ;). The vision of Reese wearing cute dresses like her big sister (instead of sleepers with buttons so that we can hide her lines from her). The vision of Reese taking a bath with the other 2. The vision of "normalcy" for us all.
The doctors have explained that Reese may have long-term issues from what she has endured. She may not do as well in school. She may not hear as well. She may have attention-deficit. Her permanent teeth may be malformed or not come in at all. She may not be able to have children. I know that these things can/will be difficult to explain to her later, but then I remind myself that if I am explaining these things...We have WON because she is with us.
I have read lots of things from cancer survivors or families who have survived (some with and sadly some without the cancer patient) the war with cancer. A consistent theme is that the cancer made them see and appreciate the small things in life, the things that you take for granted. Raising 3 kids so close in age is HARD work and I'm thankful for some perspective to appreciate what I've been given.
I'm praying that I will be crying A LOT (happy, deep JOYFUL crying) in the next year as I watch Reese return home, recover and do all those things above and MORE. I pray that God would use our lives to glorify Him. He has certainly been tender to us in the midst of our circumstances.
"Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God's love has been poured out into our hearts through the Holy Spirit, who has been given to us." Romans 5:3-5
Monday, March 26, 2012
Transplant Day
Tomorrow is TRANSPLANT DAY. From what I hear, it is a little anti-climactic. Your child gets all this heavy duty chemo that can cause all kinds of issues and then they get a transplant of their own cells back. Apparently, it is just a little IV push of some cells that takes less than an hour. Nonetheless, I'm nervous because I want to make sure everything happens correctly and that Reese feels fine and that the cells are vibrant, ready to find the bone marrow and start producing cells again!
I realized a few days ago that Reese's stem cell transplant day is March 27...which is exactly 7 months to the day after her diagnosis on August 27, 2011. It's really mind-boggling to think of all that Reese (and the rest of us) have been through over the past 7 months. I am thankful today that we are in as good of a place as I could have hoped 7 months ago. Reese has to get through this immediate transplant period in the hospital, then the first critical 3 months, then the 6-9 month period of decreased immunity, etc etc but she has been SUCH a champ through it all to this point. Nearly 7 months ago, I just wanted my baby to smile again. A few short weeks after her surgery on August 30, she gave me her first post-surgery smirk. I have been blessed with many, many sweet smiles, squeals and giggles since then. Can't beat that! There are so many other things that we (and many many others) have prayed specifically for that God has given so graciously to us....even down to the mild winter we had... My sister has been keeping a document with all of my Facebook posts over this time period because I want to be able to look back and see specifically how God has answered our prayers and carried us through this.
Today, I am praying that the chemo that Reese has received has whipped the proverbial tail of any remaining cancer cells in her body. I pray that nothing will EVER grow back, that all of the possible longterm side effects would be minimal if at all and that we can move forward from here as a family and rehabilitate her body that has been beaten up by cancer, surgery and chemotherapy. I'm ready to see Reese take a bath with her sibs (can't because of her dressings right now), crawl, eat by mouth, toddle around and yes, even climb on top of everything like all the Stansfield children do. I'm ready to be done with lines and wires and tubes and masks. A family vacation would be nice too :)
I do pray that we are done with treatment and done with cancer. I pray that we don't have any more brain surgeries or radiation in our future. (She will be having an MRI 30 days post transplant and every 3-4 months.) BUT I do know that God has been with us every step of the way...and that He has carried us through the most difficult season we have ever experienced. We aren't out of the woods yet but the meadow is much closer than it has been in 7 months.
I do know one thing from all of this. I will never be the same again. We have been and are going through a fiery trial...but we have been sustained by God's hand. God has done more in my heart in 7 months of suffering than in 7 years of ease and comfort. And I trust Him.
We have done the treatment, tomorrow we "rescue" her with her stem cells, then we pray and wait and trust. "The Lord will fight for you; you need only to be still" Exodus 14:14
I realized a few days ago that Reese's stem cell transplant day is March 27...which is exactly 7 months to the day after her diagnosis on August 27, 2011. It's really mind-boggling to think of all that Reese (and the rest of us) have been through over the past 7 months. I am thankful today that we are in as good of a place as I could have hoped 7 months ago. Reese has to get through this immediate transplant period in the hospital, then the first critical 3 months, then the 6-9 month period of decreased immunity, etc etc but she has been SUCH a champ through it all to this point. Nearly 7 months ago, I just wanted my baby to smile again. A few short weeks after her surgery on August 30, she gave me her first post-surgery smirk. I have been blessed with many, many sweet smiles, squeals and giggles since then. Can't beat that! There are so many other things that we (and many many others) have prayed specifically for that God has given so graciously to us....even down to the mild winter we had... My sister has been keeping a document with all of my Facebook posts over this time period because I want to be able to look back and see specifically how God has answered our prayers and carried us through this.
Today, I am praying that the chemo that Reese has received has whipped the proverbial tail of any remaining cancer cells in her body. I pray that nothing will EVER grow back, that all of the possible longterm side effects would be minimal if at all and that we can move forward from here as a family and rehabilitate her body that has been beaten up by cancer, surgery and chemotherapy. I'm ready to see Reese take a bath with her sibs (can't because of her dressings right now), crawl, eat by mouth, toddle around and yes, even climb on top of everything like all the Stansfield children do. I'm ready to be done with lines and wires and tubes and masks. A family vacation would be nice too :)
I do pray that we are done with treatment and done with cancer. I pray that we don't have any more brain surgeries or radiation in our future. (She will be having an MRI 30 days post transplant and every 3-4 months.) BUT I do know that God has been with us every step of the way...and that He has carried us through the most difficult season we have ever experienced. We aren't out of the woods yet but the meadow is much closer than it has been in 7 months.
I do know one thing from all of this. I will never be the same again. We have been and are going through a fiery trial...but we have been sustained by God's hand. God has done more in my heart in 7 months of suffering than in 7 years of ease and comfort. And I trust Him.
We have done the treatment, tomorrow we "rescue" her with her stem cells, then we pray and wait and trust. "The Lord will fight for you; you need only to be still" Exodus 14:14
Writing is so weird to me. I love it and I hate it. I love it because it can be such a release...and I hate it because I want it to be perfect and it drives me crazy when it isn't. Sooo, I'm gonna try to enjoy this... :)
Yesterday was Valentine's Day and I wasn't really focused on the traditional lovey-dovey stuff. I WAS very thankful for my husband and my children though. There is something about the hard stuff that makes you appreciate the good stuff. We don't have a perfect marriage and our children aren't perfect angels but we have such a rich life, full of blessings. I don't see it everyday. I don't appreciate it every day but yesterday I teared up multiple times thinking about my precious little family....and my precious bigger family...and my precious friends...and my precious community...
We got to go to church last Sunday night and the sermon covered Philippians 4:10-19 and contentment. After that, I read a friend's blogpost about contentment. (Ok, so I should pay attention, I guess since I've now heard this twice ;) As I heard and read these things, I thought to myself...I feel more content now than I did before this happened with Reese. There is something about the hard stuff that makes you appreciate the good stuff. In the middle of the passage is a phrase perhaps misused in Christianity (I can do all things through Christ who strengthens me). It can be mis-used when people apply it in a "prosperity gospel" type of fashion...meaning, "If I believe enough or am good enough, God is going to give me a million dollars and make all my dreams come true. I'll win the big game, etc etc" This verse instead is right after Paul is talking about being content in his circumstances (which at the time was prison, hunger, want).
Sometimes you just see things more clearly. Other times, it's hard to muddle through it all and you just have to remember back to the time that it was clear and it made sense.
Subscribe to:
Posts (Atom)