Abby's Journey Archive

Praise God, Abby hasn't been febrile since yesterday afternoon. She is still feeling a little nauseous now and then but we're able to keep that fairly well under control with medication. We are told that the worst of the Melphalan can hit a few days after the actual infusion. So, hopefully the nausea will improve.

Abby's counts are still fine, although we expect them to plummet any day. However, she is still eating a fair amount so they haven't started any IV nutrition yet. We are quite pleased about that. Please praise God for that blessing and pray that she will continue to eat for as long as possible.

Today was big brother, Josiah's 9th birthday. The whole family as well as Grandpa and Grandma crowded into Abby's room for ice cream cake. Abby even ate some cake!

It's hard to believe we are 9 days into our stay in the hospital. We continue to thank you for your prayers on our behalf. We are so grateful.

Today is Day 0, "transplant day." Today is also the first day that our whole family has been well enough to come visit Abby, and so Amy brought everyone to the hospital for about an hour so she could get hugs and see lots of smiles. Elizabeth was particularly happy to see Abby.

The stem cells went in without incident, however about an hour after the infusion was done Abby got nauseous and threw up. She hasn't thrown up since then, and has been sleeping most of the afternoon (probably due to the Benadryl they like to give pre-infusion). Her fever has been bouncing around from normal to about 101 degrees Fahrenheit.

The BMT protocol Dr. Graham uses numbers the treatment days starting from the day she gets the "transplant"--the receiving of her stem cells. That is Day 0. Today is Day -1, the day before the transplant. Abby has been having good days, continuing to impress the staff by retaining her appetite (most kids stop eating the day they get the Melphalan), and doing her 1-mile a day walks at quite an accelerated pace (sometimes she walks faster than her dad). She has developed a reputation around the unit even in the short week she has been here, and spreads cheer wherever she goes.

Surprisingly, because most of the patients on the unit hang out in their rooms and doors stay closed, it is sometimes easy to forget how many other patients are here. Abby's next door neighbor seems to be having a particularly hard time. She is about Abby's age, and definitely needs some prayer.

Late this evening I found that Abby felt warm to me; the nurse took her temp and sure enough she is running a fever. Dr. Andreansky has already started her on Vancomycin and Cefepime, our old "friends." Cultures have been drawn to check for line infections. He says this will not interfere with her transplant tomorrow. Please pray this is a simple neutropenia fever, and not something more serious.

In a more general sense, we seem to have settled in here. We've developed a schedule that seems to be working for us and the kids are adapting. We still have our bumpy spots, but I can't even begin to list the things large and small that I am thankful to God for--things like reliable broadband at our house AND in the hospital, strangers bringing us meals, the fact that our house is so close to the hospital, and yet the neighborhood is so quiet, the desert birds nesting in the mature trees and bushes around the house (their chirping and warbling is so peaceful), and the sense of peace brought by the Holy Spirit.

Abby had a very special visitor today. One of her wonderful chemo nurses from BDMC drove all the way down to Tucson today and dropped in to see Abby! Leslie brought her some fun craft supplies (stencil paints and some new markers) and some much needed feminine companionship.

Well, we made it through the rest of Abby's Busulfan chemo fairly well. After her mild seizure on Wednesday, the doctor increased her Dilantin dose (an anticonvulsant). Unfortunately, the increase was a bit too much so by Thursday poor Abby was stumbling around like a drunken sailor and complaining of dizziness and double vision. That is one of the unpleasant side-effects of the Dilantin. They quickly discontinued the Dilantin and now her levels are backing down to the normal range.

Abby continued to tolerate the chemo incredibly well. She only got sick one time and we're thinking it was very likely the high levels of Dilantin in her system.

Abby has been quite a trooper so far. We thought you might enjoy a little photo journal of Abby's Day so you can see and hear about what goes on in a BMT room at UMC. The pictures to the right may appear out of order, depending on where they were in the download order. Just look at the caption to figure out which picture goes with what.

First, and most important, a princess needs plenty of beauty rest. Abby wakes up somewhere around 7-8. Breakfast trays are delivered at around 8:30 and during the Busulfan portion of her chemo, Abby had to be done eating by 9. They wanted her to avoid eating for 1 hour before and 1 hour after taking her oral Busulfan at 10. She had 4 Busulfan doses each day at the 10's and the 4's. Yes, we had to wake her up at 10 pm and 4 am to swallow 2, large capsules. But, she was great about it!

Another important part of Abby's day is mouth care. She has to swish 3 different types of mouth rinses to take care of any bacteria that might worsen the mouth sores she will develop with her neutropenia. She does this 4 times a day. She says the worst one is the one that is salty. Blah!

Abby also has to walk a mile in the unit every day. They have paced it off so that if you walk around the unit 16 times you have completed your mile. Now, what makes the walking a little more challenging is that Abby cannot leave her room until she is gowned and masked. This takes a little extra time, but it keeps her protected from unwanted germs. We decided the best way to keep Abby going with her laps would be to walk a few laps then read a bit by the fish tank. It has been a nice time together. When Abby returns to her room from her walking she has to be sure to wash her hands really well.

Another part of Abby's day right now is taking time to snack, play, write, color watch DVD's and read. She has plenty of toys of her own and borrowed ones from the playroom. Disney was quite generous in stocking the playroom when they came for the Extreme Makeover so Abby is enjoying all the new fun toys. Daniel is also quite enthralled with the giant Buzz Lightyear with wings that pop out and 6 or 7 recorded, VERY LOUD phrases. Daddy and Mommy are pleased that Buzz lives in the playroom and not at our house.

Finally, Abby is really enjoying the princess room. Her bed faces a huge mural of Cinderella among green trees and flowers with her castle in the background. It really is a special treat for Abby. Of course, we have added some of our own personal decorations like butterflies, family pictures, bible verses and Abby's homemade praise cards to remind us of all the wonderful things about God.

We have felt the impact of all of your prayers during our first week here. Thank you so much for lifting us up. We are learning the way things work here, meeting some of the other patient's families, and getting to know our wonderful nurses and staff. Please continue to pray for our lives to be an impact on those around us.

Abby has no chemo today. Tomorrow she gets a one time IV dose of the other chemo drug, Melphalan. On Monday she rests and Tuesday she gets her stem cells. Then, we just wait.

We'll continue to keep you posted.

Last night late the UMC staff informed us that the Princess Room was clean and ready to be occupied, so around 10:00 PM Amy and Abby packed up all their stuff and moved across the hall. Abby is very excited. We'll post some pictures as soon as we have them.

You might recall us mentioning that this is one of the 6 rooms that was made-over by the Extreme Makeover team.

On a less happy note, Abby experienced a seizure this morning. This is not unexpected, the Busulfan is known to lower what they call the "seizure threshold" in patients, and Abby has a lower seizure threshold than most kids getting this treatment. Please pray that she will have no more seizures. They have increased her Dilantin dose and also have Ativan on hand to help combat this. She is on day 3 of 5 days of the Busulfan, her last dose should be at 4 PM on Friday.

Abby was expected at UMC, we arrived around 8:30 AM, and our nurse informed her she was going to be in the Dalmatians room. It is decorated in cute fashion with images from Disney's "101 Dalmatians". She has a great view of the Catalina mountains and is right next to the helipad--we'll see how well that works out. :-)

We're waiting on orders from Dr. Graham to start her chemo. She is cheerful and upbeat today.

We're mostly settled in our Tucson home. It is quite a blessing from God. The neighborhood is quaint and quiet. The house is comfortable. Also, our landlady has been most helpful, friendly and gracious.

On Friday, we managed to fill the back of my dad's pick-up truck with everything but the kitchen sink. It's amazing how much stuff a family of 6 can gather up and still have plenty left behind!

We spent the day on Friday unpacking, organizing, shopping, and child-proofing. We think our landlady is an interior designer and she has our home beautifully decorated with things like pillows with little tassles, ceramic statues and all glass lamps. Needless to say, many of the lovely decorations are a recipe for disaster for a 2 year old. So, I am hoping I can remember how to return this to a classy vacation rental when we leave!

We had a great time celebrating Josiah and Elizabeth's birthday yesterday. Josiah chose a theme that he and Elizabeth would both enjoy....The Incredibles. You'll see our "Incredikids" in the picture to the side. The kid's cousins, Amber and Cheyenne joined in on the fun too. We enjoyed dinner with my family, followed by an adventurous round of miniature golf and a few kiddie rides. As you can see from the picture, Daniel didn't especially appreciate his choice of ride once he got on (the kiddie-coaster). We ended the evening with cake and ice cream.

Today, we are celebrating Father's Day and Elizabeth's (actual) birthday. I tried to let C.R. sleep in, but the window in our room faces east and the curtains are pretty thin. So, he was content with some quiet time and time to set up the computer in the house while I took care of the kids. We got Elizabeth a water table for her birthday. All the kids had a blast in it today. Of course, the water play turned into a water fight...a great way to enjoy the day.

We are due at UMC tomorrow morning at 8. You can begin to pray that Abby will tolerate her chemo well. She will have chemo for the first week followed by a few days rest and then her stem cells. You can also pray that our other children will be able to handle the "hospital routine" the best they can. They will spend some days with us and some days with family. Please pray for strength and patience for everyone who will be caring for them. Finally, begin praying even now that God will show us how we may be a blessing to others in the hospital and bring glory to His name.

We have just about everything packed for our departure tomorrow. Abby is scheduled for her PET scan at 11 am. C.R. will take her and they will come to Tucson when she's done. In the meantime the rest of the kids and I will pack up our stuff into my father's truck and head down early to get settled in our rental.

Abby is due to admit at UMC on Monday. So, this weekend we will be celebrating Elizabeth's birthday and Father's Day (they are on the same day this year!) as well as Josiah's birthday a little early. Josiah wanted to be sure Abby was with him for his "party".

Please continue to pray that God will prepare us for what lies ahead. Pray that we will be physically, emotionally, and spiritually ready and that God will use us in any way He wants while we are in Tucson.

We will continue to post as often as we can.

Our radiation oncologist, Dr. Sapozink, was in the office (back from vacation) today. He looked at the 6/6 MRI and compared it with the treatment plan/MRI for Abby's stereotactic radiosurgery on 5/2. Apparently, the one "worrisome area" noted in the 6/6 MRI report actually HAS gotten smaller, praise God! What happened was that the 6/6 MRI scan was compared to the 4/25 scan because both of those scans were done at Banner Desert (the 5/2 scan was done at Banner Good Samaritan). However, between 4/25 and 5/2 (the day of Abby's radiosurgery), that nodule had actually grown. That nodule was radiated on 5/2 and is in the process of shrinking, but by 6/6 it wasn't smaller than it was on 4/25. So, it appears that the areas that were targeted with the stereotactic radiosurgery are indeed responding and getting smaller. From what we read, the process could take months.

The other "worrisome area" is in the thalamus. The MRI report calls it an "ill-defined area of enhancement". Dr. Sapozink believes this area is possibly radiation effect from Abby's radiation treatment. There is no way to be 100% certain if this is the case without going in surgically. Since the thalamus is an extremely sentitive area, surgery is impossible. Radiosurgery on that area is also not done due to the risks involved.

Dr. Graham in Tucson spoke to Dr. Sapozink about the results and he feels much better about continuing with the BMT. He would like to see Abby undergo a PET scan this week as well as an NMR spectroscopy (an MRI scan she has never had before). He hopes this will give us a little more information on the area in the thalamus.

So, at this point, it looks like we can possibly proceed with the BMT with a little more confidence. God willing, we are tentatively planning to arrive in Tucson on Friday the 17th and admit Abby on Monday the 20th.

Once again we are reminded how blessed we are to have so many wonderful people interceding on our behalf. We are so grateful for your prayers and words of encouragement. You all are an incredible blessing to us. God has definitely given us direction, peace and even more confidence in His ability to bring His best about for us. We are still praying that He will guide our path so that we are in the place where we can best glorify Him.

As many of you will recall, we were to go to Tucson on Monday for Abby to start the bone marrow transplant phase of her treatment. Amy wrote earlier this week about the results of her MRI this past Monday that revealed more tumor progression. Because of this, the doctors are doubting that her tumor is responding to high-dose chemotherapy (she had an MRI 4/25 that showed some tumor progression, radiosurgery 5/2, chemo starting 5/10, but the 6/6 MRI shows one completely new nodule, ergo it doesn't look like the chemo is working). If we are thinking that the tumor is not chemo-sensitive, then it doesn't seem to make any sense that we would put Abby through the BMT process, and we need to try other types of treatment. This could include more radiosurgery or a Phase I or II clinical trial of a non-traditional therapy.

It is possible we might still do the BMT process because it uses drugs she hasn't been exposed to yet.

We are needing God's guidance, it seemed like He had caused so many things to fall into place for us and had engaged us in preparation for the BMT, it doesn't seem logical for Him to steer us in a different direction. It's also hard for us to simply say we are "done" with the chemo process because it feels a little bit like we are giving up.

On the other hand we had a conversation with Dr. Packer from DC last night and he is encouraging us to seek a Phase I or II trial testing "biologic therapies." These therapies utilize new drugs that target tumor growth factors and/or other factors that can help the body recognize that the tumor is foreign.

Generally a Phase I trial is "hm, this looks interesting, let's try it and see what happens." It tests efficacy of a treatment, whether a patient can tolerate the drugs at all, toxicity levels, etc. A Phase II trial is "wow, we tried this, and some of our patients did 'better' after the treatment."

But the thing we need prayer for most is deciding whether or not to go to Tucson for the BMT process. After we decide, we would be able to pursue the other avenues if that seems like the direction we should take. We deeply desire to be where the Lord wants us to be. So, please pray for His leading in making our decision.

We'll continue to post new information as we receive it.

We received the MRI report today. There appear to be two "worrisome areas" noted by the radiologist. One is an area that appears larger than in the last scan and one is a new area. We are waiting for a radiation oncologist to view the MRI and compare it with the plan they designed for Abby's stereotactic radiosurgery. We need to know if the radiosurgery had any effect on the tumor sites they targeted. We should hear from the radiation oncologist on Friday.

Dr. Graham is willing to continue with the transplant, but is definitely concerned about the MRI results. He would like to see some other type of treatment along with the transplant such as more radiosurgery. We did speak to Dr. Shafron and he does not recommend traditional surgery at this point.

Please pray for wisdom as we process this new information and make decisions about what to do next. We know that God will lead us along the path that is His will for us. His ways are much greater than we could ever imagine and He has proven Himself incredibly faithful to us throughout our journey.

Abby had a wonderful time dancing in her recital on Saturday. She was a little apprehensive since she had missed over a month of class, so her teacher gave her 2 private lessons last week and it was a great refresher. As you can see from the pictures, she was one happy dancer.

For those of you who live in the Valley, our church is hosting a blood drive. Please consider donating on Sunday, June 19 (or at your local donation center). See http://faithchurchaz.org/index.php for more information.

Finally, we will be leaving for Tucson on Monday, June 13. We will be able to get mail at the following address: The Oldhams c/o The Wiersmas P.O. Box 65506 Tucson, AZ 85728-5506.

We do not yet have MRI results from yesterday. We'll post as soon as we have some.

Abby had a great collection today so they don't need us back in Tucson again until her admission date the week of June 13. God-willing, we will be enjoying a much needed break for the next 10 days (other than an MRI and an echocardiogram on Monday which is needed for the transplant setup). Abby is looking forward to participating in her annual dance recital on Saturday with her good friends. This will be a special event for her since you may remember that she couldn't dance in last year's recital because of her surgery.

You can pray that God will use this break to prepare us physically, spiritually and emotionally for what lies ahead. We may not know what we will face but we know who is in control and that is our greatest comfort. Also, praise God with us that the vacation rental we looked at today in Tucson will be perfect for us. He continues to take such good care of us.

Abby's counts are great right now--so good that Dr. Graham said it's time to collect more stem cells. We're getting more just in case, really. If this next round of chemo is not effective, we could possibly try again with a different set of drugs, so we want to have enough cells on hand to use in that case. So tomorrow we head to Tucson for the day.

They are also going to do some initial evaluation tests (EKG, chest X-Ray, etc).

We also hope to take a look at the property we will be staying in during Abby's treatment.