One of these days I know my posts will be brighter, but for now I write the truth and the truth has been dark.
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.
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.
10 comments:
my heart hurts for all of you when i read this. what a strong little lincoln to still have happy moments while going through all of this. hang in there girl!! i would love to go for a walk with you when you go. call me if you need anything since ryan and your parents will not be around. even if it's just a trip to the store to pick you up something. i would be happy to. i'm feeling better these days...i promise!
I don't think of your posts as "dark" at all! What you write is always full of hope and always has little anecdotes that make me smile (this post it was the bit about Elmo). Your patience and grace always shines through, and you make me want to do everything I can to be a better mom.
I'm glad you and your mom had a ladies night to see Billy Elliot. What a great and inspiring story!
When you have a hard day, just remind yourself that this is not your life forever. Things will get better for all of you, especially Lincoln.
XO,
Heather
What a great idea to feed elmo. That is great. Good luck tomorrow! I'll call you on my way to and from work.
Lincoln is so lucky to have you and Ryan as parents! You guys are AMAZING!! I know that things will start to get easier as time goes on. I wish I could come hang out with you tomorrow! I'll be thinking about you! XOXO
That is great with Elmo. I know it's no where the comparison, but with Hannah's newest medicine I've let her give some to her baby and she likes that. I'm so sorry to hear that his hair is starting to fall out. That must be so hard to see. I think it's so great M&D took Sawyer and it will help with your adjustment to being home. Good luck tomorrow. I'll be around all day so call if you need to. Loves.
Good luck with the results tomorrow, and with being on your own with little Lincoln! I pray that everything goes well. You and your family are all incredible people, and it sounds like you have come up with great, innovative ways to cope and help Lincoln cope as well. Keep your head up, Cheryl! And as always, thanks for keeping everyone updated, even with how sad and hard the updates are... You are such a strong mama. Lots of prayers and love are being sent your way!
I had a dream last night that everything was over for you all and that Lincoln was completely healed. We had a party! I hope this dream comes true for you soon. You are (obviously) on my mind.
I am Amy Meldau and Katy Cumming's Mom and a pediatric hematology oncology nurse practitioner. Amy told me about your blog. I always tell my patients' families that the first month of treatment for ALL is the worst. Your child is fighting the cancer and the side effects of some heavy duty chemo in addition to steroids. Soon, he will be in remission and you will primarily be dealing with the side effects of the medicine, but the cancer will be undetectable.It will be better, honest. You are at a great facility, and that helps a lot.
In one of the posts you wrote about being worried that you were sounding too down. Sometimes it is hard to be positive when you feel down. It is a natural emotion. This is your blog and you should be able to write it how you are feeling it. We all love you and support you in your emotions both negative and positive. I wish I were closer to give you a hug. As a parent, I have wondered how you know when your child has something going on that is abnormal. How did you know that something was wrong with Lincoln? We will definitely continue to keep you all in our prayers.
Love ya,
Jess
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