27 July 2008 Sunday morning:
Jennifer, on her way to early Sunday morning meetings, bent down to give Brynlee a good-bye kiss. She was startled and amazed to find a very large bump on Brynlee’s neck.
Blessing: Brynlee was given a Priesthood Blessing which continues to be a great support and benefit to her family.
28 July 2008
Brynlee sees her pediatrician
4 August 2008
Brynlee sees her pediatrician
11 August 2008
Brynlee sees a specialist
12 August 2008
Brynlee enters Primary Children’s Hospital for surgery and biopsy
14 August 2008
Brynlee re-enters Primary Children’s Hospital to begin cancer treatment
15 August 2008
Brynlee is waiting as an “add on” for the surgery center to call for her. They will put her out and take a spinal tap and a bone marrow sample and put in a shunt or a main line so as to be able to administer chemo.
16 August 2008
Brynlee was finally able to get into surgery late last night…Friday. They did the spinal tap and bone marrow test and inserted a “shunt” or a “main line”, which is a permanent (until they remove it) I.V. through which they will administer the chemo. She was not allowed to eat ANYthing yesterday due to the fact that they didn’t know exactly when they could get her into surgery. It was a LOOOOONNNNG day for Jen and Jeff but Brynlee was allowed out of quarantine to play in the playroom and that helped. She is a real trooper which actually makes me sadder for her….she is so good. Jeff said even the nurses were impressed at how well she got along yesterday without food in a strange place.
When she came out of surgery and recovery they finally were able to give her some juice which she immediately threw back up….so they just let her sleep it off and at 9:00 this morning she was still sleeping. Today she will have CT scans to determine if and where there might be more tumors. Her type of tumor usually starts in the stomach so they want to be sure they know what they’re dealing with. After the CT scans they will start the chemo. The type of chemo she’s getting is supposed to be gentle on her and tough on the cancer….meaning that it should not make her too sick.
This cancer is fast growing, but also fast dying. That’s good, but they have to be sure that the dead and dying cancer cells don’t “clog” her kidneys and liver. So, they will keep her very hydrated and check her blood constantly. When they are home a home health nurse will come to take blood samples from the “main line”. They will have to return to the hospital for 3 days each time she gets more chemo.
That’s about all I know at the present time. I’m going to deliver some things to Jen today, so I may learn more then. I’ll try to post what and when I learn something.
17 August 2008
I visited with Jen, Jeff and Brynlee yesterday. Brynlee was being her very cute self and except for the IV inserted into her newly implanted ‘central line’ and the dark circles around her eyes, she was our sweet Brynlee. Jen told me later in the evening that she has begun to complain about pain in her legs. The nurses…who are wonderful and love Brynlee…told Jen and Jeff that the chemo can give her aches and pains. They gave her some morphine for the pain. They had lots of visitors, being Saturday and all. Brynlee’s siblings got to come for a visit so they could see where she is and get a sense of what’s going on. I will take Sadie for the week and Linda, Jeff’s mother, will see that the other children get to school and home again and take charge of them at their own home before and after school. Jeff plans to be at home from Sunday evening until they all get home from their first day of the new school year. It seemed at first that this whole timing thing was bad, but having the children start school will probably be a great distraction for them all and give them some “order” to their day.
The best news of the day is Brynlee had her spinal tap and bone marrow tests and her CT scans. She was a real trooper for her CT scans and didn’t have to be sedated. The spinal tap came back CLEAR….YIPPEE! The other test results are not in as far as I know right now, but the doctors expect them to be good also. If they are, it will mean a lot easier road for Brynlee and her family.
I just talked with Jen today, Sunday 17 August 2008, and she said the CT scan results came back this afternoon. They found something suspicious on one of her kidneys and some “spots” on one of her ovaries and her lymph nodes in her abdomen are enlarged. It’s not great news but it doesn’t really change anything. They will continue with the planned treatment and it should get rid of all the tumors. Future CT scans will let them know how it’s going.
Jen learned that after Brynlee’s second round of chemo, the treatments will be no closer than 3 weeks apart. That will help give some “normalcy” to their lives if that’s possible. The first 2 treatments, the one she had yesterday and the one she’ll probably get next week, are actually partial treatments. They start slowly to see how she’ll do then when she graduates to full treatments, they will be only every 3 weeks and possibly further apart depending on her blood count, etc. Each treatment will require 3 days in Primary Children’s Hospital.
19 August 2008
YIPPEE, Brynlee (and parents) are on their way home. They will be at home, as long as things go well, until Monday. Then, it’s back to Primary Children’s Hospital for 5 or 6 days for the second half of her first treatment. They learned today to expect 5 or 6 days for each of the following 4 times Brynlee will need treatments. They expect that the next 6 months will be in and out of the hospital but by then, Brynlee should be well on her way to full recovery.
25 August 2008
Brynlee and her parents went back to Primary Children’s Hospital today, Monday. She had a spinal tap and a check of some sort of her heart and then they started the chemo treatments. They have to make sure she goes to the bathroom every 2 hours around the clock….so, even during the night they have to get her up and be sure she goes. This will keep her system flushed and assure that the dead cells are leaving her body and not causing her kidneys and liver problems.
26 August 2008
Jen says “Brynlee has been a grouch today, but so have I”. I guess this is getting old already. I told her, “This is only Tuesday”. There are so many different treatments that have to be administered so many hours apart or together, ect. that they will have to be there until Friday. They did get word this afternoon that Brynlee’s “exiting” spinal tap is scheduled for noon on Friday. That’s the last thing they should have to do at the end of each chemo “trip” so they are hopeful they will be home sometime Friday afternoon. Then they will have 3 days home and then Jen goes to American Fork Hospital to deliver Kade on Tuesday, September 2nd. If all goes as planned, I think they will go back to Primary Children’s on Monday, September 15th. That time, they will take Brynlee’s little brother with them :o)
27 August 2008
Jen says they had a much better day today. Brynlee has slept or been very “lazy” all day long. That’s a little sad because it’s not like Brynlee but her body IS working hard to get well so rest is a good thing. It let’s Jen and Jeff get a little bit of a break…whatever that means when you’re taking care of your child in a hospital. The medicine they give Brynlee for nausea also makes her sleepy and the nurses said it’s probably why she’s so mellow today.
29 August 2008
Brynlee came home today. She finished this round of chemo, had her spinal tap and came home. Along the way, she threw up which is common for coming out of the anesthesia which they have to give her for the spinal tap. She’s mostly just tired and rests a lot. Jen is sooooo ready to have the baby and feel better. Her ligaments and joints and entire body is sore and tired.
30 August 2008
Jen’s R.S. sisters cleaned her house and are bringing in dinner so Jen is getting her wash caught up, her bills paid and taking it easy. Brynlee took her clear bandage off that covers her central line so they had to clean and replace that….then, as Jen was thinking that they should give her some of her nausea medicine, she threw up. So, I guess the chemo is making her nauseated, and the meds are helping. They just need to keep them in her. Thank goodness for that medicine. She wanted to go outside but Jeff wasn’t home and Jen can’t walk well enough to take her out so Jen put a movie on for her to watch and she promptly fell asleep. She is so tired, poor thing. When Jeff comes home, he may take her for a walk in the stroller and keep her away from other people. She can’t be in the sun too long, though. Something about the chemo making her burn easier and we don’t want that.
2 September 2008
Jen and Jeff dropped off Sadie and Brynlee on their way to the American Fork Hospital to have their baby boy, Kade August Card. Brynlee and Sadie played well together and Brynlee was acting fairly normal. She wanted to go outside and the weather was nice so we spent some time in the backyard out of the sun looking for the bunnies that live in our yard.
Kade was born at 4:30PM and weighed 7 lbs 7 oz and was 19 inches tall. Mother and baby and Daddy doing well.
Brynlee and Sadie had a little “cat fight” before bed….so all is normal here.
3 September 2008
Jeff came to the house to clear Brynlee’s central line and take the girls to see Jen and their new baby brother. I went later to the hospital to see them and bring the girls back home. Brynlee has bad sores in her mouth from the chemo treatments. The chemo kills all fast growing cells…thus there will be mouth and throat sores and most likely hair loss. I gave her some of her pain medicine when we returned home around 11:30 AM. Around noon she ate a pretty good lunch considering her mouth sores. Then she and Sadie lay down on my bed to watch a Winnie the Pooh movie and have quiet time. Brynlee fell asleep for about 2 hours. When she awoke, she was GROUTCHY. She didn’t want anything or anyone. I left her alone for awhile but stayed in the room with her. I began thinking she wasn’t looking good….possibly even feverish. If her temperature gets over 100, we have to call the doctor. So, I took her temperature twice and both times it was 102.5. I called Jen and Jeff at the AF Hospital. They called their doctor and he had us take her to the AF Hospital emergency room. Jeff met me there and they tested Brynlee’s white blood cell count. It was zero….not good. They gave her a vile of antibiotics through her central line and sent her with Jeff to Primary Children’s Hospital. I went upstairs to be with a very anxious Jen. I stayed with Jen for a few hours and it seemed to help her to have someone to talk with. Jeff called as soon as he had some information from Primary Children’s Medical Center (PCMC). They will keep Brynlee (and Jeff) and watch her. They suspect her body will begin replacing the white blood cells on its own. They have medicine to help if it’s needed. They will try not to give her a transfusion but allow her body to do the work. She will stay at PCMC until her count is over 500 and she has no other symptoms ie fever, etc. for 24 hours.
This, unfortunately, is “normal” for this disease/treatment. We, hopefully, were planning on NOT having any hiccups in the schedule, but it looks like the doctors and nurses knew what they were talking about when they “warned” Jeff and Jen. Right now, Brynlee is in the best possible place for her. She is where there is filtered air and no or very little contamination. She is where the doctors and nurses can watch and care for her. Jen is concerned that she cannot be with Brynlee, but Jen knows that God is in control. He knows their situation and all things work together for them that love God…..AND, Jeff is completely capable of caring for Brynlee.
Jen had a decent night’s rest as she let the nursery take Kade between feedings and she took a sleeping pill. Jeff reports that he and Brynlee slept fairly well also. Jeff will stay with Brynlee at PCMC and I will take Jen home sometime later today or tomorrow morning. She’s planning on this evening if all goes well.