Tuesday, January 31, 2012
Oh blessid sleep...will I ever get you back? For eleven nights Ryan or I slept next to Lincoln in the hospital. The first night back he went to bed in crib like the old days and I was so revealed. Then, two hours later he was up screaming for us and we ended up on the couch. He hasn't slept in his crib since then. So, he falls asleep on the couch...with one of us next to him or at least in the room. We either move him to his crib only to have him wake up screaming a few hours later or sleep with him on the couch. We try and take turns, but the past two nights he's woken up demanding me and is only consoled when I arrive. I am grateful that I operate as well as I do with little, low quality sleep.
They warned me about the steroids.
In some ways I'm glad I have a drug to blame his behavior on...because it is bad. He is demanding and cranky and cries hysterically when things aren't exactly how he wants them. And he's starving all the time. He's gained 3 pounds in 2 weeks. Only weighing 27 pounds that's a lot. For example, yesterday morning I had snuck back to my bed around 3 am and at 5:15 he woke up screaming "want a grilled cheese sandwich!" I got up and started making it. As soon as I did he was screaming "mommy hold you! (meaning hold me)" So I sat down and held him. Then it was back to the grilled cheese. So I ended up holding him on one hip making a grilled cheese with the other hand. Five bites into it he wanted scrambled eggs. At 5:15 in the morning. So I blame the drugs and the situation and the cancer. I pray I'm not creating a total spoiled brat by catering to his every whim. But how can I not?
I still can't believe they just dropped their lives and rushed across the country at a moments notice. Actually I can. They are amazing like that. What an example of love and sacrifice. My mom quit her job that she loves. Just having them here everything seems so much more bearable. They are constantly telling us how proud they are of Ryan and I and how awesome we are doing. They are my cheerleaders. When Ryan and I grow up I hope we are parents just like them.
He went back to work yesterday. So the world continues to turn I guess. Life goes on. Lincoln's immune system is wiped out right now so obviously hand washing and cleanliness is crucial. Ryan has taken this very seriously. Every night he deep cleans the house. Last night he did it wearing hot pink cleaning gloves. I love him.
When I think about all the people praying for us and Lincoln I am overcome with gratitude. His name is one dozens of temple prayer roles, including the prayer role that the first presidency of our church prays over. A friend who comes to classes I teach at the gym is a physician who travels the world on medical service missions helping people in 3rd world countries. I received an email from him that he'd asked "His holiness, the little boy, The Chosen One" of Bhutan to pray for Lincoln. I myself have never prayed so often and so fervently. Lots of prayers all around the world are being offered up to the Lord. I know he hears them.
Today home care is coming to get a blood draw by doing a finger prick. Lincoln is going to hate it.
I should never make brownies again. He wanted the whole pan and screamed relentlessly for an hour, literally, when I wouldn't let him have them all.
Sawyer sleeps through everything - it's remarkable and another tender mercy.
There is a fine balance between too much mirilax and not enough to keep Lincoln's bowels regular on all these meds and it is a constant issue.
It's ironic that he wants me all the time when I'm the one who causes him the most frustration shoving meds down him. I am his greatest source of comfort and distress.
I feel like a big complainer all the time :( Sometimes it's not all so bad. Things could be a lot worse. Everything is relative and relatively I know I still have things really, really good. It just seems when I sit down to blog all my frustrations spill out.
Saturday, January 28, 2012
We came home yesterday afternoon. I was so happy for Lincoln. The past 11 days have been filled with one traumatizing experience after another and every day he asked to go home. It feels good to be back, but it's also scary being away from the medical staff. I'm so glad my parents are still here. It's making the transition much easier with all their help and support.
How he's Feeling.
At times Lincoln seems like he feels okay, but most of the past 24 hours he's been pretty lethargic and very clingy to me. I want to hold and carry him if that's what makes him happy but it's also so exhausting. Sometimes he winces and says "feel sick". It's so frustrating not knowing exactly what symptoms he's experiencing.
His Prognosis So Far.
I felt like we had a huge set back yesterday. Medically and emotionally...but mostly emotionally. He had a bone marrow biopsy yesterday morning before we left the hospital. They were hoping to find less than 5% cancerous white blood cells in his bone marrow. If that was the case he wouldn't have to have another biopsy and spinal tap for two weeks. It would have meant his body was responding quickly to the chemotherapy. The quicker your body responds in the first month the more likely the patient is to achieve complete remission. It would have been such wonderful news. Instead the doctor called and told us he still has 56% cancerous white blood cells. The new hit me hard and I had panicked and had meltdown. The doctor said it doesn't change any plans for treatment yet, it just means we have to do another spinal tap and bone biopsy next Friday and then again in two weeks and if it isn't under 5% at that point treatment will become much more aggressive...and his chances of complete remission go down. So now we wait. It's going to be so hard to relax and not think about it for the next two weeks.
The nasty Meds - steroids in specific
This morning we got his steroid medication in pill form and instead of crushing it we split it into three pieces. Then we put it in a lump of mashed potatoes. He swallowed the whole thing in one bite. I don't think he could taste it at all. We did the same thing tonight. I am so grateful it worked and we had one less battle. So very grateful. The other meds he still has to take in liquid form and we still battle and force them down him. But they are less crucial so when he spits them out it's not such a big deal.
Another note on the steroids.
The main side effects of the steroids are increased appetite, irritability and mood swings. We are definitely seeing these in Lincoln. Last night he woke up in the middle of the night and ate two huge bowls of cereal. He's probably eating three times what he used to. And he's cranky.
My little Sawyer has been such a trooper through all this. He's adjusted so well to being watched by my parents. I really miss him and am glad to be home and seeing him more often. He just makes me smile all the time. I should do a whole separate post just on him and how fun he is right now.
Teaching at the Gym
Currently I teach six classes a week at four different gyms. I haven't given any of them up yet because I just don't know what my life is going to be like and don't want to make any rash decisions. I taught a dance class last Tuesday and a yoga class this morning. It felt weird both times. It was nice to break away, but I felt guilty being gone. I'm pretty sure I'll have to give some classes up. And that's okay. It's sad though. Lincoln loved going to the gym child care.
Gifts, cards and Notes.
Thank you all so much. I can't say it enough. I mentioned this before, but texts, emails, cards and gifts seem to arrive at just the right times. I am overcome by your love. Yesterday during my melt down after I talked to the doctor I received a bracelet in the mail from a dear friend in Virgina. Inscribed on it are the words "Brave Girl". It made me cry really hard because I was so touched by the gift but also because I realized that was exactly the opposite of how I feel. I'm terrified. But it helps to think she already thinks of me as brave. So from now on "Brave girl" is who I will try to be.
Here are some pictures from our eleven day stay at UPMC children’s hospital. Best hospital on earth if you ask me. They are in no particular order. Note the beauty that is Lincoln’s hair. It better come back exactly the same!!!! The two random boys are Garrison and Stevie. Garrison is the little black boy. He was released and is doing well. Stevie is wearing the mask and was very sick when we left Friday and will be there for a long time. Love those two boys. Pray from them too…especially Stevie.
Tuesday, January 24, 2012
Chemotherapy is chemical therapy that consists of a cocktail of several drugs given at different times throughout treatment. They all have side effects. So far almost everything has been given to him through his port directly into his body. When we go home I will have to continue to give him drugs by mouth. One of which is steroid called Decadron. Because I have to give it to him at home they started having us practice giving it to him by mouth here. We started last night. We crushed the pill and put it in a spoonful of pudding. He took it great and we were thrilled. This morning Ryan gave it to him and I wasn't here but he said he only fought it for about a minute but was easily bribed. Tonight was a different story.
He has caught on to the fact that the pill makes the pudding disgusting. We started trying at 8. We bribed him with candy. We tried reasoning with him. We pleaded with him. He absolutely refused to eat it and screamed and cried at the suggestion. We took away his blanket. We took away his pacifier. We wouldn't give him his drink. I threatened to leave and then I left. That was devastating for him. I sat outside the hospital room and listening to him cry and beg for mommy to come back. Finally, at 10 pm after two hours of exhaustion for all three of us, Ryan physically forced it down Lincoln's mouth and throat. That drug is administered twice a day for the next 3 weeks. It's not fair that we have to be so mean to him and make him eat awful, horrible pills. I can't believe we have to do that again in ten hours. I hate it. But he is quick to forgive. So quick to forgive.
Ryan is amazing. This whole time he has been so strong and level headed. He has been at Lincoln's side as much as I have. He has been so patient. He has been so loving, so encouraging. I don't know what I would have done without him tonight. I really don't. I'm so glad we're in this together.
Monday, January 23, 2012
Feeling the weight of all of it.
When I was first told that for Lincoln it would be a total of about a 3 year process before it was completely over that was a lot. Then I accepted it and told myself that would be it and we would get through it and we would be done forever. Then yesterday afternoon we were visiting with Lauren's grandma. Lauren is a sweet little girl who's been here for a while. I assumed it was her first time around but learned from her grandma that Lauren was initially diagnosed as a baby at 17 months. She'd been in remission for 5 years....but now, at nine years old they are back. She had a relapse. Her hair is gone again. That hit me like a ton of bricks. Maybe this won't be gone forever after three years. Maybe this will haunt us forever. When I think about that it's hard to breath.
Lincoln's First Steps
The first few days Lincoln was really sore and had some legitimate pain from his bone marrow biopsy and spinal tap. It hurt to walk and stand so we carried and held him for a couple days. On the 5th night however I knew he was feeling better and could walk. He was crawling all around and kicking his legs when we'd change his diaper but every time we tried to stand him up on his feet he tucked his knees to his chest and refused. He'd completely reverted physiologically and was convinced it hurt to walk. Eventually we got him to try and I don't think I'll ever forget his little face. It was like he was walking for the first time. He started out slowly shuffling along but with in minutes he picked up speed and his shaky little legs remembered what to do and his face beamed with pride and excitement. He spent the next half hour walking up and down the hallway in his diaper and T-shirt, IV pole rolling along beside him - happy as could be.
Gifts at exactly the right time
Everyone has been so incredible and we have felt so loved and supported this week. Several people have sent or dropped off little gifts and they seem to arrive at exactly the right time. Lincoln hates it when I leave the hospital but sometimes I have to come home and shower and see Sawyer and have a tiny, little break. Today he had a rough morning. They introduced a new drug as a part of the chemo therapy. He couldn't leave his room for a couple hours and they had to take his vital signs every 15 minutes so he was particularly grumpy and clingy. I needed to leave but was feeling extra nervous about it. Before I left the primary president arrived with some gifts. Lincoln got engaged in making the little puppets she dropped off and I was able to slip away without him even noticing. Those little tender mercies mean so much to me.
Family and Friend Fast
Yesterday so many friends and family and my entire ward fasted for Lincoln and our family. Through out the day I stopped multiple times to think about all the people who were thinking of us, praying for us, and fasting for us and felt overwhelmingly loved. Thank you.
Saturday, January 21, 2012
Last night he slept through most the night. Although for the 3rd night in a row he didn't fall asleep until after 11 - so late for him. He's still asleep now. He woke up once while they were taking his vitals and was in pain. His little body tensed up and I could tell it hurt when I moved him. He asked to "give mommy hugs" which means to hold him chest to chest bear hug style, but when I picked him up he was so rigid and stiff and couldn't relax. I called for more pain meds. I asked him where it hurt and all he said was "mommy kiss it better". He's said that a lot the past few days. That has been the hardest part for me.
The Port -
I hate it and I love it. I hate it because I hate that there is this permanant (three years seems permanent to me) forgien thing in his body that will be a site of possible of infection and soreness and a reminder of his illness. I love it because it's helping him get better. It's an amazing blessing of modern medicine. I haven't even really seen it yet. It's covered with mounds of bandaging.
The IV pole - Hate it
I wish they would just let me silece it when it beeps so loudly so often especially in the night. It makes my blood boil. Espicially when it wakes up my baby. I have silenced it a few times but it just goes off again after a few minutes until I can track down a nurse. Also, it's so annoying dragging it around with him and constantly making sure he's not getting wrapped up in it or that it's pulling at is chest. And I just hate the idea that he's hooked up to a machine 24/7....but again, love it because I know it's helping him.
The staff - Awesome.
The social workers - Awesome. Especially the one who found me when I was folded up outside Lincoln's room on the floor sobbing uncontrolably two mornings ago when I couldn't let him eat. I and needed a break and finally turned Lincoln over to Ryan after 12 hours of holding him. She kindly took me in a room and listened to me cry and vent. It's funny doing that to a complete stranger. But I knew that's what she was there for and I was grateful.
The dogs that come visit the patients - Awesome. Especially the ones with painted toesnails who wear sunglasses.
The other patients - Not even a word for how awesome they are. Especially Stevie and Garrison. They are 9 and 10 and have taken a liking to Lincoln. They hang out in our room a lot and answer all my questions about what it's like to have Luekemia and remind me that kids with cancer can still be happy.
My parents. - Best in the world. Drove 30 plus hours practically non-stop to be here.
He just woke up. More later.
Thursday, January 19, 2012
Lincoln has ALL. Acute Lymphoblastic Leukemia. I don't know too much about the disease other than it is changing our world drastically and it's breaking my heart. The good news is that 85 to 90 percent of kids survive and he is in excellent hands. The bad news is that he is in for a whole lot of pain, discomfort and suffering over the next 2 to 3 years.
Right now he's not doing so well. He's suffering from pain from bone marrow biopsy and Lumbar puncture. At the moment we're waiting for him to go down and get a port inserted into his chest that he'll receive treatment through instead of the IV from now on. He's so hungry and thirsty and keeps asking me for food and milk but he can't eat until after the procedure and it kills me that I can't give him anything. They are taking forever!!!! Try distracting your 2 year old from food and drink for 7 hours after waking up. And after not haven eaten since the morning before.
Last night was bad too. He was in obvious pain and couldn't get comfortable and just wanted to be held. I'm trying to stay strong for him but it's close to impossible to hold my tears in when his are flowing so regularly. He's just so perfect and sweet and innocent and I hate that he has to go through this and I can't explain to him why.
All that sob story being said...we have a lot we are grateful for including a close, wonderful hospital filled with wonderful doctors and nurses, and an amazing support system of incredible friends and family. Thank you all for the many emails and well wishes and offers to help. My parents are driving from Utah now to stay with us indefinitely which we're so grateful for. We definitely recognize these blessings but the fact of the matter is that all those things help Ryan and I and don't take anything away from Lincoln's suffering which is the only thing I want to fix.
Thank you so much for you're continued thoughts and prayers. I'll try and keep people posted on his progress.
Thursday, January 5, 2012
2011 ended pretty darn well for us this year. We had a really fun December. Here’s a little re-cap with lots of pictures. The boys loved having our Christmas tree up. Lincoln cried when I took it down.We went and saw ten million lights at Hartwood Acrs. This started out great and ended back. It was a long time in the car and a long, tearful ride home. Note to self….don’t let your boys sit in the front seat of the car with you for the lights and then expect them to happily go back to their car seats for the drive home.We trekked down to DC to spend Christmas weekend with Wendy and company and had a jolly good time. We checked out some awesome toy trains.Wendy and I got our bake on. Lincoln opened some sweet Christmas Pajamas from Grammy. “He Thinks I’m Sleeping” :)
Saywer opened some sweet Christmas jammers from Grammy.“Define Naughty”….couldn’t be more appropriate for this little troublemaker. Anderson and Max got Jammys too.We made cookies and set out Carrots for Santa and the reindeer. But the naughtys at the carrots….I know weird that they didn’t touch the cookies.
We ate a delicious traditional Weiler Christmas breakfast of sausage egg casserole, grapefruit and cinnamon rolls that helped Wendy and I not feel so homesick.We loved watching the boys open there fun gifts. Anders was thrilled about his remote control car.Wendy was trilled about her bowl.I was surprised with a swanky, high-tech, dermatologist recommended face washer and Ryan was stoked about his popcorn kit.Finally we met up with some wonderful longtime friends the Mudricks for a quick catch up over lunch.Merry Christmas and Happy New Year!