Abby's Journey Archive

Dr. Panchoosingh, our oncologist, dropped in today to check up on Abby at the hospital and let us know that based on the progression of the chicken pox he thought she could go home on Sunday. That was in line with our original thinking, but Amy wisely observed that there weren't really any reasons why she needed to stay in the hospital--her blood counts looked good, she was tolerating the acyclovir well, and she had not manifested any other symptoms that would indicate that the chickenpox had caused problems with her internal organs. She has only four more days of the medication. Plus, we were already experienced with delivering IV medications at home, so why shouldn't we just go home?

Dr. Panchoosingh thought for several minutes, and then surprisingly said..."You're right. Let me see if we can get the paperwork together." So we are just ecstatic that we get to have our weekend back!

What a wonderful blessing from God, and we know it is because there are so many people that have been so faithful to pray for us. We thank you, and also thank God for you.

We got home at about 7:00 PM. An hour and a half later our nice home health nurse came and gave us the overview of administering the acyclovir. The home health version of the drug doesn't even require a pump, it comes in a pressurized disposable sphere that delivers the medication at the correct rate for one hour. How wonderful! No syringe, no pump.

Our radiation group informs us that they would prefer that we not come back for the remaining four days of radiation until all of the pox have scabbed over and Abby is no longer contagious. That will probably be early next week. If it's God's will that means we might be able to still complete her radiation therapy next week.

We also had a long talk with Dr. Panchoosingh and Jane about Abby's diagnoses and our planned chemo regimen. That will have to wait for our next post--there's lots of detail and I want to make sure I get it right.

Well, as we are learning time and again, nothing is predictable. Today we discovered that the "bug bites" that were slowly multiplying on Abby's body were actually chicken pox. It's a long story that I don't have time to write about right now, but basically the bottom line is that Abby is back in the hospital again.

They are delivering antiviral medications to prevent her from getting a secondary internal infection from the pox. She is feeling fine...not really complaining about itching or anything. They want to observe her at least through Saturday. Right now the plan is to resume radiation on Monday (which means she will finish on Thursday instead of Tuesday of next week).

We did meet with our oncologist about the separate diagnosis today (which is another long story that I can't write about now). However, the two doctors didn't reach a consensus on the diagnosis so among other things, we will be getting a third opinion about the diagnosis.

Sorry to be so brief, but I have to get Abby's stuff together to bring to the hospital. Thank you for your prayers. We are certain that God is continuing to direct us where we need to be and your prayers are a great comfort to us.

We're down to 5 days left of radiation. It's hard to believe we're at this point. We thank God for giving us all the help and support from our family and friends during these past weeks.

Abby weaned herself off the Versed throughout the week last week so by Thursday, she was doing her treatments without any medication. Everyone is quite excited for her.

We meet with our oncologists tomorrow. Please pray that we will ask all the necessary questions and that all the information we need will be available.

We heard from our oncologist today. He received the pathology back from Dr. Rorke at Philadelphia Childrens Hospital. We sent Abby's sample to her at Dr. Packer's recommendation because she is the doctor who discovered the ATRT. Dr. Rorke believes Abby's tumor was actually an Anaplastic Astrocytoma (in the glioma category of pediatric brain tumors).

Dr. Rorke's diagnosis is being sent to Dr. Hart in Wisconson to see if the 2 of them can come to a consensus. Her radiation will remain the same, but the chemotherapy will depend on what the final consensus is.

Please pray that all the doctors involved will get the information they need in a timely manner so they can recommend the best course of treatment for Abby. We intend to meet with the oncologist a week from Wednesday to discuss this.

Today Abby had oral Versed (it's a mild sedative that makes you "feel good", but doesn't put you to sleep). She's been getting IV Versed for all her treatments, but we wanted to leave her port unaccessed so we tried out the oral stuff.

Abby was incredibly at peace today. She even decided to ham it up a little. Abby and I gave our ends of the yarn a little tug between 2 doses of radiation and then she shot her hand up in the air and gave us all a little princess wave to the camera. Everyone in the booth with me got quite a kick out of it. Her anesthesiologist (the "smiley doctor" who gives her an ink smiley face anywhere she wants each day he is there) was so excited about how well she is doing that he got on the phone and told his scheduling office that they needed to set him up to come back on Monday. He wants to bring his camera and take pictures to show to other patients who are going through radiation so they can see that it isn't so bad.

Abby was quite thrilled to be able to pull the needle out of her port today. She was even more thrilled at the thought of not having to access it again for quite a while. We feel so blessed by God this week. We have really felt His presence. Thank you for your continued prayers.

Her treatment today went 90% better! God has definitely given Abby an abundance of peace with all your prayers. She whimpered a little when they put her mask on (we'll try to post a picture of her mask when we have a chance so you know what we mean). Then, she whimpered again when we had to leave, but other than that she was great! She held still and didn't cry at all. It is great that we can talk to her with a microphone, watch her on a TV monitor and (at the advice of our Child Life Specialist) "hold her hand" by putting one end of a ball of yarn in her hand and one end in our hand running the yarn out the door of the radiation room and into the operating room where we stand. After each of the 7 series of radiation doses we give the yarn a tug while she does the same thing.

Abby is quite delighted with the thought of all the angels that were in her treatment room. She continues to imagine where they are sitting (she says there are at least 100 of them in there). She giggled and said that there was one on top of her mask. Thank God for giving her the comfort of His presence and the ability to trust Him.

She did it. It was hard and she said she didn't like how tight the mask was, but she did it anyway. The anesthesiologist will be on call the rest of the week until we're sure she can do without. Keep praying!

Here's some information I received from my sister about Abby's Uncle Roy. Thanks for keeping him in your prayers.

Roy is looking and feeling good. He has gone back to work half days and enjoys getting out of the house and back into something productive. Since being released from the hospital, he has lost another twenty pounds and continues to be diligent with his diet, monitoring and medications. It's a new and exciting lifestyle for all of us. Life is good - God is so good! Thank you all for your prayers, support and concern.

Abby is half done with her radiation treatment. She is finished with her full cranial and her spinal dose. They started the focal treatments for the tumor sites about 3 days ago, so she was face-down for half of the time and then turned face-up. Since they are done with her spinal treatment, she will be face-up for the remaining 3 weeks.

Abby would like to try her treatment without sedation tomorrow since she can be face-up. She is still pretty hesitant about having the tight mask on, but we are encouraging her to do her best. She likes the idea of being able to eat before her treatments and not experiencing dizziness due to the sedation. Please pray for her to have peace as she tries this out tomorrow. I really believe that if she would just give it a try she will find it's not so bad.

Abby's hair is down to a few wisps now. It started falling out in clumps on July 5th and by the 8th it was off her head and all over our couches, cars and carpets. She dealt surprisingly well with it. She mentioned a few times that she was sad, but she was also able to take it in stride. She would make comments like, "I better put on a hat to go outside to cover my BALD head." She collected a lot of it in a baggie that she labeled, "Abby's Hair" (in case we weren't sure whose it was). She would also pull out clumps and tickle Josiah's nose with it.

Abby's "Hip-Hat" arrived in the mail yesterday. It's a wig-alternative. Essentially, it's a cotton cap with hair stitched to the edge. She wears one of her own hats over the top. We ordered a blonde, 12", straight one. She was quite thrilled with her instant long hair. She has worn it quite often since it came...rotating hats about every 2 hours. We're glad she has this small thing to make her treatment time more bearable.

We'll post another update with more about her chemo schedule after we get more information from our oncologist. Thanks for keeping us in your prayers.

We're home from the hospital. Abby's port placement went great. The surgeon and anesthesiologist were both extrememly accomodating to the number of special requests we had. Abby is beginning to show signs of great anxiety about being taken away from us while she is still awake. So, she got to fall asleep on my lap. Also, they accessed her new port and removed the IV from her hand while she was still asleep. So, she'll not have any "pokes" until next Monday. Her port will remain accessed through Friday for her daily sedation at radiation. Then, they'll pull the needle and she will be free from anything external for the weekend! And this time we checked to see that all the monitoring patches were pulled off before she woke up also. Now, we need to get her off to bed.

Praise God we're still home-no call back to the hospital so far. We had a great 4th of July weekend. Our family enjoyed the neighborhood celebration on Saturday. We slid down a giant water slide, ate a picnic lunch and snow cones, decorated our wagon for a patriotic parade, played water games and listened to a band while socializing with friends. On Sunday we were able to watch the fireworks from our back yard playset. Today Abby got a break from her radiation so we're all going to the circus.

Tomorrow Abby is scheduled to have her port placed at 4:45 pm. This is an outpatient surgery so we hope to be home well before bed.

Abby's line removal went without any problems today. She was only sedated for about a total of 20 minutes and they had no difficulties. They did discover a clot in the red line which they sent for testing. If that comes back positive, she'll have to return to the hospital for more antibiotics. So, we're hoping NOT to hear from anyone in the next 5 days! At this point, we are done delivering antibiotics.

We had a laugh in the recovery room with Abby today. She was enjoying her post-procedure popcicle and she reached down to scratch her side. She looked at us with a disgusted look and said, "Good grief, another patch!" The post-op nurse had missed removing one of the sticky round patches they use for monitoring purposes. Poor Abby has probably ripped about 20 of those off her chest over the past 2 months and they are sooooo sticky! What I appreciate about Abby is that when I explained why her comment made me laugh, she cracked a little smile.

The plan is for a new line to be placed sometime next week. We are leaning towards a port which is a line with a disc that sits right under the skin. This is accessed with a needle every time it is needed. The port has a lower infection rate because there is nothing protruding from the body. The other advantage to a port is that it allows Abby to do things like swim, run and bathe with her little sister :) Abby likes that idea.

We are off to bed now minus our nursing duties...no IV pump, antibiotic syringes, saline and heparin flushes and alcohol preps....just washing faces and brushing teeth....how pleasantly normal!

Abby is scheduled to have her catheter removed today at 2:00 PM MST--we have to be at the hospital by 12:00 noon. The procedure is very short, though she will still be asleep because it can be somewhat traumatizing.

We're still trusting that God has a good reason for this, though it is at times frustrating, especially since tomorrow (Friday) she still has radiation scheduled. She has been sedated for every radiation treatment so far. With no catheter in place, she will have to have an IV started to receive the Propofol, and that means a needle stick.

Amy worked with her a little bit this morning on laying face down in the mask in the treatment room without the top half of the mask in place. She cried the whole time, but Amy could tell she was trying hard and making efforts, and not just fussing because she didn't feel like it. She is genuinely scared, though they tell us the radiation treatments don't make noise and don't hurt.

She has 8 more face down treatments, and then she can flip over and lie face up.

Please pray that Abby will really experience the peace of the God surrounding her treatments. We very much want her to be able to turn to God to quell her fear, especially because of all the statements in Scripture that state "do not fear for I am with you." Thanks for your prayers.