Abby's Journey Archive

We got Abby home at 2:00 this afternoon. The report from Dr. P this morning was exciting. Abby is no longer neutropenic so she doesn't need to take any antibiotics or IV nutrition from home. She also doesn't need to see the doctor until Tuesday. Needless to say, we are quite happy. Abby is very glad to be home. She hasn't needed anything but Tylenol today. She has spent the afternoon taking short rests, helping Elizabeth and Daniel play and cuddling with various family members on the couch. It's great to be home! Thanks for your prayers.

We have a tentative plan to go home tomorrow!!! After we saw Dr. P this morning the "team" (nurses, nutritionist, social worker etc.) mobilized and started working out the details. There is a lot more that needs to happen to make this discharge work. First, Abby will switch off the morphine pump to an oral morphine medication. Second, Abby needs to take in about 300 calories today to ensure that she is actually capable of eating/drinking something. Right now she's working on a Banner Food & Nutrition department smoothie. She's doing well, even though it's not Jamba Juice :) Also, the Home Health people need to put together all the necessary medications as well as IV nutrition (until Abby is able to take in all her calories by mouth). Finally, the hospital needs to wade through all the necessary red tape so we can bring her in on Sunday and Monday to be examined and to check her labs (our oncology office isn't open on the weekends).

God Bless you for your faithful, fervent prayers! Her ANC (absolute neutrophil count) is 100 today compared to 30 yesterday and 8 the day before. We're moving up! Keep praying that we will see no infections while she is still neutropenic and that those counts will keep climbing up. Also, pray for all the details to work out for our departure tomorrow.

Abby's white blood cell count is up to .5 so she's steadily climbing. She's been a sleepy-head this morning so I don't yet know how she feels. I'm guessing she's about ready for another red cell transfusion. She usually gets kind of sleepy when her red cell count goes down.

Abby is still sleeping, but her labs are already back. Her white blood cell count is at .4 instead of .2 and .3 (where it has been all week) and she has a few "bands" (types of cells they look for to see if her body is recovering). Hurray!

Abby had a really good night. She slept well and seemed to push her morphine button less often. This morning she got up and around to play on the computer, assemble a marble run toy from the playroom and play a game with me. This is a definite improvement from the past few days. Her counts are still at zero so keep praying they will start to recover soon.

Abby looked much better when I arrived today. She seems to be in pain, but in better spirits. C.R. made her walk to the playroom to get her video to watch today and she even ate some of an ice cream bar I brought her today. We're still praying that her counts will start going up and the sores will then start healing over.

We'll be in for a while. Abby still needs the morphine and isn't able to eat or drink much. There is still no sign of infection, but her fever keeps rising a few times a day.

Right now we're praying that her body will start to recover. Her counts are at zero. We are told that as soon as her counts start to rise, the mucocitis (mouth and throat sores) will start to heal and she'll feel lots better.

On a lighter note, we're in the "hair collecting" stage again. Abby realized her hair was starting to fall out yesterday and requested a baggie to hold it. She was sad, but said, "at least now I don't have to wash it".

Abby is now getting morphine from a pump in the hopes that she will be able to tolerate eating/drinking something. Please pray that she will be able to start healing and eating soon.

She hasn't had a fever since this morning, and there is still no sign of infection. We do not have a release day yet.

We had a pretty good night. Abby was able to tolerate her pain with Tylenol. She says the mouth sores aren't too bothersome, but the throat sores are making it impossible for her to eat anything but liquids. She asked for Tylenol with Codine this morning so my guess is that the throat pain is pretty bad (Abby has an incredibly high pain tolerance). She received platelets last night and is receiving red cells right now.

So far, there is no sign of any infection, praise God. Keep praying it stays that way!

Abby developed a fever this afternoon that brought us to the office to check her counts. The doctors decided to admit her and start a stronger IV antibiotic. Dr. Graham had prescribed a prophylactic antibiotic which we were delivering at home. They are checking her new line as well as her port for any infections. If her fever stays down and none of her lines show infections, Abby will be discharged in 24 to 48 hours. It looks like she is ready to get her platelet transfusion and is very close to needing red cells. So, my gues is this is her body's typical way of saying, "I'm going to need some blood".

You can praise God with us that her fever developed during the day which saved us from a visit to the ER. You can also praise God that the new oncology unit here is so quiet and peaceful. We will certainly get some good rest.

Abby's stem cell infusion went well yesterday. Praise God her red cell count stayed stable all weekend and still seems to be holding on. Dr. Graham told us that the drugs that she received this round aren't as hard on the red cells as the Vincristine she had last time.

Abby is now neutropenic and experiencing some pretty nasty mouth and throat sores. This is a new and unpleasant symptom, but she seems to be handling it as well as possible. She couldn't eat anything this morning, and swallowing her medications was quite painful. We will be stocking up on popsicles for a while now.

Tomorrow we are due to take her in for a platelet transfusion. Next Monday we will begin injecting neupogen into her line. Praise God she doesn't have to give herself the shots anymore! Then we will just monitor her counts and see when she recovers.

Sorry for the late update, but we had a very busy day yesterday. I arrived at the hospital at 9 am and found the nurse preparing to disconnect Abby's IV. She was discharged at 10:00! We gave Abby the option of going home or to school since she will certainly miss her last day of school next Friday because of low neutrophil counts. She wanted to go to school and have me go with her. By the end of the day she was pretty tired, but glad she went.

We have our weekend free and she'll go to Tucson Monday for her stem cells. You can pray that she will not have a need for any red cell or platelet transfusions before Monday. The only way we can give her a transfusion here is to admit her to the hospital.

Thanks again for covering us during this part of Abby's treatment.

Dr. Williams came by this morning and said that we will aim for discharge at noon tomorrow. Her last chemo is scheduled for midnight tonight. She continues to tolerate the Topotecan with none of the expected side-effects.

Yesterday and last night were great for Abby. In the afternoon, she was energized by a visit from her friend, Lindsay. They invited 2 other patients into her room for a very noisy and giggle-filled play time of Barbies. Daniel also came to the hospital with me and gave Abby her dose of giggles and grins for the morning. She was so glad to tell him all about the Spider Man and Rescue Heroes car awaiting him in the playroom. It always amazes me how Abby is able to think of anyone but herself when she is enduring her treatment. Isn't it beautiful how having a relationship with Christ allows even a 6 year old to look beyond her current trials? Now, Abby IS also human. She does have her selfish moments, just like the rest of us, but it brings us great joy to see Christ doing His work in her just like the rest of us.

Many people have asked how much Abby knows about her situation. C.R. and I have always intended to allow Abby to ask questions as she felt comfortable. We often ask her if there is anything she wants to ask or if she is worried about anything. Abby knows that her cancer is very aggressive and that people can die from cancer. In fact, she asked me a few weeks ago if she would be homesick in heaven or if she would miss people. It is quite clear that she understands much more than I would have expected. However, she also has an incredible peace about her future. We may not know what our earthly future holds, but we do know that ultimately we will be in heaven worshipping around the throne of Jesus because we have made Him Lord of our lives. Abby had the opportunity to write in the chapel journal at Give Kids the World when we took our wish trip. I told her that she could write anything she wanted to for the staff, volunteers and other wish families who may read it. She decided to write John 3:16. For God so loved the world that he gave his only Son, so that everyone who believes in him will not perish but have eternal life. What a wonderful promise we have for a future free from cancer and all the other ugliness of this world!

As always, thank you for your faithful prayers.

Abby slept most of the morning, but by 1:00 she perked up and started eating. She seemed to tolerate the Topotecan dose today. She said it didn't make her as sick.

Despite the fact that she was so sick all night last night, her spirits remained surprisingly peaceful. She reminded herself often that her angels were with her and once she said they were singing praise songs :) Thank you for your prayers. God is ever faithful.

The cytoxan really got to Abby last night--around 7:00 PM she started to feel pretty sick, and threw up every hour to hour and a half all night until about 5:00 AM. During her last treatment we used Ativan to help control the emesis, but it was not effective this time. She's sleeping now. We switch drugs today to the Topotecan, we pray it won't be as harsh.

Thank you all for praying.

Abby's new central line is in and is looking great. She's been admitted to the pediatric hematology/oncology unit at Banner Desert, and is just waiting for a few tests before she starts her chemotherapy. The cycle will last 3-4 days, she'll be in a day for hydration, and then they will discharge her. We will wait a day or two to make sure the Topotecan is out of her system and then travel to Tucson for stem cells.

The new unit at BDMC is beautiful. It is so pleasant--lots of light, large rooms, (almost) real beds for parents to sleep in, showers in the bathrooms.

Please, please pray that the chemo will be effective and that she will tolerate it at least as well as she did last time. We'll keep everyone posted.

We rousted Abby out of bed at 6:00 this morning, but she proved to be most cheerful and smiley. We loaded up and were off to our "home away from home." After check-in Debbie from Child Life came to see us and we had a lively chat just catching up.

I had a first today--they actually let me back in the OR when Abby went to sleep. She did great for the anesthetic.

And before we knew it, Dr. Janik was coming to get us. She needed a little Demerol post surgery but it immediately improved her disposition.. The new line is not in the middle of her chest like before, its off to the right side, and she is very happy with that.

We're just waiting for her to be released from recovery and we will be heading down to the new oncology unit.

Another reason to praise God...Abby's spinal tap from Monday is clear. This means the tumors have not invaded her spine.

Abby got discharged at about 11:00 AM today and we came home. She has recovered nicely from the procedure--Dr. Sapozink said he had not anticipated any acute side-effects, though we may see some symptoms 6 to 18 months from now. That's just how radiation therapy affects people. He also told us that the areas irradiated did not appear to have changed substantially from the previous MRI.

We also have some more details regarding her next phase of treatment. We have a week off; next Monday she will go to Banner Desert to have a phoresis catheter put in, and also to start her chemotherapy, which will primarily consist of 4 days of cytoxan and topotican. The cytoxan will be delivered at higher doses than before. Then, unlike before, we will wait through the weekend and go to Tucson the following Monday to get her stem cells infused. This is because the topotican has to be out of her system completely before she can get her cells back.

We've also heard back on the pathology from Lucy Roarke at Children's Hospital of Philadelphia. She is sticking by her diagnosis of an anaplastic astrocytoma. You might recall that this is a very different tumor from a PNET, and the first time we had her look at it she said the same thing. We're going to get another opinion from a well-respected pathologist at St. Joseph's here in Phoenix. Either way, it doesn't change our treatment plan, according to Dr. Graham. It still would be nice to get some kind of consensus on the pathology.

So we have a week of peace, to some extent. Please pray she will tolerate the new chemotherapy at least as well as she did last time around. And pray for Abby's brothers and sister--they are figuring out that we are really starting this all over again.

Believe it or not, we just now got finished. Apparently the treatment plan was far more complicated that they originally estimated. A two hour estimate turned into almost five hours. Dr. Loomis told us that she did great being under for that long. She's waking up now, and some of the first words out of her mouth were "when can I eat?"

We haven't heard an official report yet from anyone. We'll write more after we get debriefed.

She's under observation for about an hour, and then she gets a short ambulance ride to Phoenix Children's, where she gets to spend the night.

We were up bright and early this morning--3:45 AM to be exact. We had to leave the house by 4:30 to make sure we made it to Good Sam by our 5:30 AM check-in time. All went fine, Abby was even cheerful despite being awakened at this hour.

We were met by Dr. Loomis, one of Abby's favorite anesthesiologists. He accessed her port, and she pushed her sleepy medicine just like always.

The Stereotactic Radiosurgery process needs an MRI and a CT scan, then the two images are electronically fused together and used to create a treatment plan. A rigid frame is also attached to her head during this time to provide a fixed point of reference for the delivery of the radiation.

The planning process takes 2 to 3 hours. Abby's done with all the scanning right now, but she will still be sleeping throughout. We're just waiting for them to come and tell us the planning process is done, and then we will move down to radiation oncology.