Here is Kolby getting her vital signs. Kolby is up to 92 pounds. She had a weight gain of 4 pounds in the last two weeks. That's great! She was able to eat normal and keep it down. She was also off chemo and steroids for the last two weeks. Overall she felt so much better. We wish it would last longer.....
Kolby has a port implanted underneath her left breast. It is a thin, soft, plastic tube that was inserted into her vein in her chest. This allows medicine to be given into the vein or blood to be taken from the vein. The port is accessed by inserting a special needle called a Huber needle. It is then pushed into the skin and into the port. This is where they take her blood and check her blood levels and also where she receives her chemo. An hour before Kolby goes to the doctor, there is a special cream we rub on it to make it numb. She does not feel the needle go in, but we still close our eyes and cringe each time the nurse accesses her port.
In this picture Kolby is having her Spinal Tap. This takes about a half an hour for the whole procedure. She is put to sleep, then a long needle is inserted into the base of her spine. Spinal fluid is then drained and checked to see if there are any malignant cells. Then they inject chemo into her spine to make sure no cancer has entered into her spine. This does not hurt Kolby. But she is very tired and sore when she wakes up.
Kolby is receiving her chemo in this picture. This is the dreaded Doxorubicin. This type of chemo is the worse. The side effects are horrible. We do not look forward to the next week. But she will not have to have chemo again for 21 days. For the next seven days she will take a different type of steroid (more pills). So, for the next 7 days she will be taking over 30 pills a day. Yes, she is not a happy camper. But like we tell her, these are saving your life, and she knows it. It is just hard, especially if she gets those horrible blisters in her throat. The pills do make her sick, and that is what is so hard. They save her life, but make her sick.
When we were at the doctors office there were two other kids getting spinal taps. One little boy was 5 years old and he was just diagnosed with Leukemia. The other boy was 18 years old and he also had Leukemia. His name was David. David has had leukemia for 8 months, and he has to have chemo for 3 years. During their treatments us moms sat and talked for a couple hours. It was so nice to visit and share our experiences and feelings. Kolby woke up before David and she visited with his mom too. It was very nice to talk to someone else who is going through the same experience. It helps to know you are not alone. I am definitely going to check out some of the support groups for families. At first we were not interested, but the more we go for treatment and the more we meet other families I realize how important it is to have that additional support and friendships. Candlelighters offers so many programs and activities for kids with cancer. Kolby isn't a very social kind of girl, but I really think socializing with other cancer kids will really help.
Today Kolby's blood levels were pretty low. She was one point away from having a blood transfusion. Her red blood cell count and hemoglobin were extremely low. We will have to watch her closely this week, and if she gets headaches, shortness of breath and low energy we will need to take her in for a transfusion.
So far today she is feeling pretty good. She has had a very long day, and she is pretty tired. We sure hope and pray for smooth sailing these next few days. Next week she will only need to have her blood levels checked. No Spinal taps, just blood work. Then in two and a half weeks she will have to have another CAT and PET Scan. While her cancer has reduced, the doctors need to measure the total reduction to determine her next step in her treatment.
Today is the first day of her 21 day cycle. It's a first and we are not sure what to expect. All we can do is hope and pray for the best. We are so thankful that Kolby's body is responding to the chemo. We hope and pray that she continues to improve and by her next scans her tumors will even be smaller.
I am so glad you got to talk with other cancer patients/parents. I think that with such a unique tramatic experience, it would be helpful to talk with other going through the same gunk. We are so hoping and praying that Kolby will take these 21-day rounds a little better. Much love...
ReplyDeleteWe are praying that Kolby doesn't have as much discomfort from this round of chemo. It is so good for you to talk with other parents going through the same trial. I pray that she does not have to go through a blood transfusion. I pray for your family everyday. Please, if you need anything call upon me my friend. Love you guys!!!!
ReplyDeleteWhen I finished reading this, I let out a big deep breath and caught myself doing it. I just can't believe all that she has to go through. Ya it's saving her life and for that it's worth it (very very very worth it), but DANG!!!! I just feel so bad she has to go through all of this.
ReplyDeleteI really hope you don't get the blisters. Everytime I read about the blisters (in past posts) I just couldn't believe it...it seemed HORRIBLE! Kolby stay strong and get some rest after a long and laboring day. Lots of love and prayers! Your Heavenly Father is mindful of you always even when you feel like he has forgotten you! You're amazing and strong!
30 pills a day? That's crazy! I appreciated this post with all of its pictures and details. I have a clearer image now of what those doctor's visits entail.
ReplyDeleteWell, I suppose the next few days might be a little hairy after the dreaded chemo treatment. But hopefully, you'll get to enjoy some better days before the next cycle begins. And hooray for the weight gain! Keep eatin' girl! Wish somebody would tell me that... :)