My mom’s Birthday was on Saturday and we had such a great day celebrating. I asked her what she wanted to do for her Birthday and was really hoping to spoil her with something fun since she’s done nothing but serve me and my family for the past 6 weeks. All she wanted was to go to the fabric store so I could pick out fabric so she could re upholster my kitchen chairs. So, that’s what we did. We spent her Birthday looking for an awesome gift for me. That’s how amazing she is. Before we did that she played play dough with Lincoln while I was teaching a yoga class. I came home to this masterpiece. Then we made a real cake and the boys loved playing with the candles and singing Happy Birthday. We finished off the night watching the last few episodes of “Parenthood” one of our favorite shows. I love my mom so much and really don’t know what I’d do without her.Lincoln was supposed to start the next phase of treatment tomorrow, but they came and tested his blood on Thursday and his counts weren’t high enough. He has to have an absolute neutrophil count of over 750 and his was only at 45. So now they’ll test his blood this Thursday and hopefully start Consolidation on Monday the 5th. While this is disappointing because it prolongs everything a week and I want this whole thing to be over as soon as possible, it’s kind of nice to have no medications for a whole week. Lincoln will feel good all week and we don’t have to fight giving him any meds. It should be a really good week. So that is what I will embrace. I’m going to try not to think about Consolidation and the challenges and sickness it will bring and just enjoy Lincoln while he’s feeling good. I just wish we could have friends over and go places. At least we have grammy here for a little while longer. Cheers to that.
Sunday, February 26, 2012
Thursday, February 23, 2012
Lincoln’s final results from his last biopsy came back and they are negative! He has no more cancer in his body and he is officially in remission. He went from 93% cancerous cells in his blood to zero in 29 days. That’s pretty awesome. We are so glad this is working and he is on his way back to total health. Doesn’t he look good!?
Even though the cancer is gone, he still has treatments for the next three years to ensure that it won’t come back. Induction is now over and he starts Consolidation phase on Monday. This phase is 57 days and looks pretty rough. He has four spinal taps during this phase, the first one this Monday. He gets chemotherapy through his port Monday through Thursday for the next two weeks, then has a two week break (although I still give him oral drugs during that time) and then he gets chemo Monday through Thursday through his port for two more weeks. Ugh. Not excited. He’s getting a few new drugs he hasn’t had yet and I hope he handles them well. He will have his port “accessed” Monday through Thursday, meaning he will have tubs hanging out of his chest for four days each time. I worry he’ll be annoyed with them and try to pull them out. We are going to have to be so careful.
In other news, we came home from his unplanned 3 night stay at the hospital due to a fever on Monday and he has had a great week since then. His blood counts are up and rising….just in time to knock ‘em back down starting Monday, but I’m learning to just really enjoy the good days and not think about the upcoming bad ones. He had a good time with Stevie at the hospital. We love him. He is a really good friend to Lincoln.
Remember that other little boy I have? The forgotten child? He’ll be 18 months next week. I fully intend on doing a photo shoot and blog post all about him. When Lincoln came back on Monday we kept him and Sawyer isolated from each other for a few days because Sawyer still had a runny nose and cough. Sawyer lived in the basement and Lincoln lived upstairs. It wasn’t ideal, but it worked. Today we reintegrated them and it’s been nice to have my boys together again. Love you Soy bean.
Friday, February 17, 2012
Well, we came in this morning for Lincoln's biopsy and now we'll be here for at least 48 hours because Lincoln has a fever. We started noticing a little runny nose on Monday. Tuesday and Wednesday it got worse and he started coughing. By yesterday he was complaining that his ear hurt too. He never had a fever until this morning. When kids with cancer get fevers it's serious and they get admitted. So, here we are. They still did the bone marrow biopsy and spinal tap they had scheduled for today, but we won't get the final results from the biopsy until next Friday. We are hoping for and expecting to see no cancerous cells. If that's the case, or even if it's less than 1% he will be considered in remission and we'll start the next phase of treatment - consolidation. If not, we intensify current treatment and stay in Induction phase.
Mom, Dad, and Sawyer came back
My parents and Sawyer came back to town on Tuesday. We knew they had mild colds, but decided to bring them back anyway and just be really careful. So who knows who Lincoln got sick from. I had a slight cold that started Sunday so it could have been from me, Sawyer, my mom or dad. It was probably me or Sawyer. My dad's cold was the worst and so we isolated him to the basement for the most part and he flew home on Tuesday. It was sad to see him go but he'll come back when he's better to help my mom drive their car home. He left us a dozen red roses. He's the best. My mom is staying indefinitely for now...we're just taking it one day at a time. We have been so lucky to have their help.
I think Sawyer was a little mad at me when he first came home. He wouldn't look at me for a while, but he forgave me soon enough, and now if I'm in the room he'll only let me hold him. Good thing I have two arms and only two babies. I'm so glad to have him home.
Dad shaved his head.
During the less than 24 hours my dad was here he decided he wanted to shave his head like Linclon's. When he showed Lincoln that their heads matched, Lincoln thought that was pretty cool.
I asked Lincoln the other day what happened to all of his hair and he said "daddy pulled it out". Which is true, Ryan did pull a lot of it out by constantly running his fingers through it. He doesn't seem to be bothered by his missing hair and has definitely seen himself in the mirror now.
About a week ago a wonderful friend brought over a quilt she made for Lincoln. She had all the primary kids from Church and some leaders write little messages, draw pictures and trace their hands for Lincoln. I love it. When I look and it and wrap it around us I feel the warmth from the blanket and the strength, support, and love from those who made it. Thank you Susan and those who contributed.
No showed at the Gym
I had the worst night Monday night. My parents had just come back into town around 6 pm and at 7 I got a call from the fitness director at Urban Active. She asked me if I was supposed to be teaching a class right now. I gasped and apologized and told her I'd be right there. I had totally forgotten that I agreed to sub a pilates class that started at 6:45. Over 40 people were waiting for a me. I have never in 8 years of teaching just forgotten about a class. I.felt.awful. I can't even tell you how awful I felt and still feel about it. It was totally unacceptable and inexcusable. By the time I arrived at 7:15 two people were still there waiting. The director was pretty forgiving but I still feel so bad and can't believe I did that. Ryan's asked me to stop subbing classes. He keeps reminding me that we should be trying to simply our lives, not complicate them. I think he's probably right. Luckily I was able to get together with some of my girlfriends for some good old "Bachelor" watching later that night to lift my spirits. Thanks ladies.
A few days ago Sawyer and I were on the air mattress downstairs. He was being his usual rowdy self and decided to dive, full force with his scull right into my cheek. I can't believe a 25 pound body was able to cause me such pain. I thought he broke my cheek. I totally started bawling and Lincoln and Sawyer just stared at me. Now I have a nice big black eye. It's actually looks better than it did.
Lincoln has a really pretty good week until he got a cold. He had chemotherapy last Friday and I was anticipating a horrible weekend, but he really didn't seem to have to many side effects bothering him. It was so good to see him happy. One night he even slept 7 hours straight without me having to go and console him. Since he's had a cold he's been cranky and irritable and super clingy. We haven't slept much the past few nights. He still sleeps on the couch only.
Hope you all have a great holiday weekend. Thanks for all the continuing love and support. You all don't even know how helpful you've been through this. You make me want to be a better friend and person to others experiencing hard times. Thank you, thank you, thank you.
Sunday, February 12, 2012
Lincoln fell asleep on the couch and Ryan sat and ran his fingers through his hair for about a half hour. The second picture below is how much hair he got out.February 9th his hair looked much thinner, but he still had a pretty full head of beautiful auburn hair.Three days later, today, February 12th…..here he is. I pray his beautiful hair will come back the same way it was because I loved it so much. I can’t believe how fast it all came out in only 4 days. I thought maybe he was going to be some miracle child who never really lost his hair since it’d been 3 weeks and he hadn’t lost much at all.
This morning he was coming into our room and I think he got a glimpse of himself in the mirror because he just stood at our bed not moving like he was upset about something but not enough to cry over it. I’m grateful he’s young enough to not know or care much about self-image. Ryan begged him to take out the pacifier for the pictures but he wouldn’t and as you can see he’s completely reverted back to that habit both day and night. I must say though, he is still pretty beautiful even with the passy and without the hair.
Thursday, February 9, 2012
I was a little scared to be home alone with Lincoln all day all week. Ryan went back to work and my parents took Sawyer and went to DC to visit my sister. It's been okay though. I'm positive if my parents would have left Sawyer here I would be completely overwhelmed and unable to manage. Lincoln is really high maintenance. And I don't blame him. The doctors said that coming off of steroids can be as bad as being on them as far as irritability, but Ryan and I are starting to worry that this is just how he is right now. He's been of the steroids since Friday and he's still so cranky and volital. Everything sets him off...the big things like forcing him to take his medicines and the little things like changing his diaper or clothes, brushing his teeth, taking a bath, wiping his hands...those things he used to handle fine. Now he cries and fights at everything. His voice is totally gone from all the streaming. So, if Sawyer were here it would be too much. I sure miss the little guy though. The forgotten child. That's what it feels like.
Home Care Finger Pricks
Eric is our home care nurse. He comes once a week to take blood samples. The first week he came went well because Lincoln had no idea what was coming when Eric pricked his finger. Then he of course cried but got over it quickly. On Tuesday when Eric came for the second time I geared up for a big battle since Lincoln might remember the last visit. To my amazement he did great! He held out his finger, Eric pricked it and Lincoln didn't cry at all. I couldn't believe it. Eric put the bandage on and was gone. About ten minutes later Lincoln took his band aid off and started bleeding all over. His platelet levels (platelets clot your blood) are very low so his blood was thin and coming out fast. Also, any cut can be a potential source of infection so I got really nervous and tried to put a new band aid on him. Then came the battle. He was furious and did not want a band aid on. My friend was over and we had to pin him down and hold his hands apart for several minutes so he wouldn't rip it off with him screaming and flayling the whole time. When we let go he ripped the bandaid off but luckily it didn't bleed anymore.
I feel like this week would have been so much better if he didn't have his blasted mouth sores. They are a reaction to his chemo therapy and to treat them we give him a medicine FOUR times a day. So on top of his mouth hurting making him grumpy we have to do the medicine thing all day. It seems he's just recovering over the trauma of the last dose when it's time for the next. Fighting the medicines is one of the worst parts.
Good News from the Biopsy
On Monday we found out the results from his Friday biopsy. They couldn't see any cancerous cells in his bone marrow! I can't tell you how wonderful that was to hear. I guess the goal is to kill all the cancer with in the first 30 days so he is right on track. Then the next 3 years are spent keeping it from coming back. The doctor was very careful to remind me that he is not yet in remission, but that this is good news for now. A week from Friday, on the 17th they'll do another bone biopsy that is much more detailed, sensitive, thorough and accurate. If they don't see any in that one then he'll be in remission. In other words, just because they didn't see any in the less expensive, less accurate test last Friday doesn't mean there aren't any...but it's still a really good sign. And I'll take any good signs I can get. After such a bad weekend I was so glad to hear that all of this seems to be working.
Sunday, February 5, 2012
The Past couple Days
Thursday night was awful. We knew Lincoln would have to go under anesthesia for his biopsy Friday morning and couldn't eat past midnight. So we woke him up at 11:45 to try and feed him. He was so mad at being woken up that he only ate half a bowl of cereal and went back to sleep. Two hours later he was up screaming for food. For an hour and a half he begged and cried to eat. Ryan, my parents and I all tried to distract and console him but he was hysterical. Finally I asked my dad to give him a blessing. He blessed him to relax and be calm. Shortly after Lincoln fell asleep on my lap. I thought it was over. An hour later he was up screaming for food again. After another hour of hysterics he feel asleep again, and then woke up again crying at 6:30. I decided we just needed to go to the hospital early to get out of the house and maybe that would calm him down. He cried off and on until they finally put him under at 10 am. He hated the process of accessing his port, although I don't think he could feel it with the numbing cream. He just didn't want people touching him. Everything is so out of his control and so traumatizing. The procedure went fine and then they gave him the chemo. We should have gone home around noon but his hemoglobin was too low so he had a three hour blood transfusion and we left the hospital at 5. After literally no sleep the night before I was exhausted.
Friday night was bad, but not as bad as Thursday. Fragmented sleep for us all, but at least we could feed him. Then last night might have been as bad as Thursday. He was over-tired and felt crummy from the effects of the chemo. He woke up every hour crying hysterically. He would scream "mommy hold you", so I held him. But then he'd hit me in the face and didn't want to be held. He lost his voice he screamed so long and hard. At 4 am after sleeping and waking so many times we gave him a small dose of benadryl to try and deepen his sleep. It worked and he slept until 7:30. He's off the steroids now so I'm holding on to the hope that the nights to come will be better.
Side effects of the Drugs
In general I think he feels pretty bad. On Friday they gave him Vincristine and Doxorubicin. The common side effects include constipation, stomach pain, hair loss, irritation of nerves: numbness and tingling of fingers and toes, muscle weakness, nausea, vomiting and mouth sores. There are less common side effects including jaw pain, seizures, double vision, drooping eyelids, and heart damage. I'm certain he's experiencing the muscles weakness because he's barely walked since then and when he does he's shaky and unsteady. He also definitely has mouth sores. This is part of the problem with his sleeping because he wants to suck on his pacifier but it hurts his mouth. The rest of the common ones I think he's probably feeling but not sure. His hair is starting to fall out.
My Parents Took Sawyer
Friday night my parents took Sawyer and drove to visit my sister Wendy and her family in DC. My dad had gotten a cold and we felt like he shouldn't be around Lincoln, plus it was the plan all along for them to visit her at some point. They took Sawyer with them. It was kind of a last minute decision. While I'm absolutely positive it was the right decision, I really miss him. Ryan and I have our hands so full with Lincoln and it would be so much harder with Sawyer to take care of too. He is having a great time with his cousins. So much more fun than he'd have here with us. They will all come back in about a week.
Giving Elmo Medicine
We have a new medicine for Lincoln's mouth sores we're supposed to give him FOUR times a day. Yesterday we made a little progress. We let Lincoln give the "medicine" (water) through the same syringe to his Elmo doll. He thought that was great and it made him smile. Ryan did his high pitched Elmo voice and Elmo validated to Lincoln that is was kind of yucky but not so bad and over fast. That time Lincoln took the medicine with out a fight.
Tomorrow Ryan goes to work and my parents are gone. Just me and Lincoln. Maybe it will be warm and I can take him on a walk. We should also get the results from his bone marrow biopsy tomorrow. Please let all these treatments be working.
Thursday, February 2, 2012
Before all this crazy nightmare started my parents already had a trip planned out to visit us from February 2nd until the 10th. My mom and I bought tickets to see "Billy Elliot" at the Benedum Theater downtown and were both really excited. After everything that's happened we debated if we should still go. We decided that we would. My dad and Ryan would be home with the boys and we figured it'd be good to try and forget about things for a while. It was good, and I'm glad we went. I forgot about my troubles periodically throughout the performance. During one tender scene between Billy and his deceased mom my mom and I were both in tears and part of me wished we'd stayed home, but overall glad we got out.
I am dreading tomorrow. We go in at 8:30 for another bone biopsy and his first chemotherapy treatments through his port. I'm so scared he's going to freak out when we drive up to the hospital. He was so happy to leave and it's his first time back after being there for 11 days straight.
I'm afraid the whole thing is going to be a disaster. He's going to wake up starving and we're not going to be able to give him any food or drink because he's going under anesthesia. He's going to cry for food the whole time and not understand. It's going to be worse because of the steroids. He's not going to want to take off his shirt, or get cleaned or hold still while they access his port for the first time.
The truth is I don't really know what to except after that. I hope they just give him the chemo while he's out after they do the biopsy. I hope they don't drag it out into two separate procedures, but for some reason I think they will.
Mostly I'm so afraid of the biopsy results. I'm afraid if the percentage of cancerous cells in his bone marrow haven't dropped significantly I won't be able to take it. Thinking about it makes me nauseous. I have to remind myself to inhale and exhale.
I guess this is when I remember I have to be brave. For him.