Abby's and Daniel's reminders
When Abby's MRI scan was clear in January he didn't quite understand that we could change our prayers from "make Abby's cancer go away" to "please keep Abby's cancer away". However, after a month of reminders from Josiah and Abby, he seemed to realize that God had, indeed, cured Abby. This morning he asked why Josiah was praying for Abby's cancer to go away. "God maked it go away, right?" he questioned me. Abby then responded, "Yes, He did, but then He allowed it to come back so we could share more about Jesus at the hospitals". I told Daniel that we could pray again that Abby's cancer would go away. He put down his breakfast food and said, "I will pray that right now". And he did.
May I always remember that nothing we are experiencing is beyond God's power. And, He is always ready to listen to our prayers. So often I think to myself, "I will pray for that tomorrow morning." May I be in constant communication with Jesus. He delights in our relationship!
Schedule for stereotactic radiosurgery
We have to check in at Banner Good Samaritan on Monday at 5:30 am. Dr. Sapozink anticipates being done by 2 pm. Again, their plan is to perform radiosurgery on the two areas that appear to be recurrent tumor which were too deep to remove with traditional surgery. They will also radiate any area(s) of concern that appear on her MRI that day. After Abby has recovered from the anesthesia, they will transport her via ambulance to Phoenix Children's Hospital where she will stay the night for observation. She is looking forward to the ambulance ride, but her brothers are going to be quite jealous as this will be her 6th ambulance ride :)
Thanks to those of you who have been praying for scheduling issues to be resolved quickly so Abby's treatment isn't delayed. There are so many people involved in her care that scheduling can be a nightmare, but things are proceeding smoothly.
Please pray for our doctors, Dr. Sapozink and Dr. Shafron as they carry out the radiosurgery on Monday. You can also pray for a clean spinal tap which they will perform while Abby is asleep. One of the areas they are going to radiate is near a ventricle. Basically, that means that if it moves much further, it will invade the spinal fluid and can travel to other areas besides the brain. The spinal tap will show that Abby's spine is still clear.
I spoke with Dr. Graham in Tucson and he is still leaning strongly toward 2 rounds of chemo, but isn't sure whether or not we will be able to have the first round here at Banner. We should know by the end of the week. It sounds like her first round of chemo will begin on Monday, May 9 or Tuesday, May 10.
This passage from 2 Corinthians 1: 3-4 (New Living Translation) encouraged me this week.
All praise to the God and Father of our Lord Jesus Christ. He is the source of every mercy and the God who comforts us. He comforts us in all our troubles so that we can comfort others. When others are troubled, we will be able to give them the same comfort God has given us.
Would you all please pray for us to be an encouragement to others as we travel this road. I so often meet other families and wonder if they have the same hope and peace that we are blessed with. I still shed many tears and struggle with worrying about the future, but God has given me so many moments of comfort, peace and joy and I want others facing trials to share in that comfort.
Thank you again for your faithful and fervent prayers!
MRI and Stereotactic Radiosurgery
Unfortunately the MRI confirms that there are two more areas of suspected recurrence that were deeper than Dr. Shafron wanted to go.
We are going to try to obliterate these areas with stereotactic radiosurgery, which does not require an actual incision, but works by focusing several weak beams of radiation on a central spot. Then we will followup with either 2 or 3 more rounds of chemotherapy like we discussed before.
Please pray that we can get everything scheduled for the SR posthaste. Dr. Graham is worried that we will end up delaying treatment like we did before. There are a lot of little "parts" to the SR procedure that need to come together.
Through all the stress, pain, frustration, and panic God remains. He has been like a blanket over us, covering us and "lifting our heads" when there seems to be no hope. We of course have no idea why he wants us to walk this path, there are certainly many reasons, but we like to think God's glory has been demonstrated in Abby and ourselves.
For those of you in the valley, Abby will be representing Make-a-Wish at the Cold Stone location at 2960 S. Alma School Suite 3 in Chandler. It is on the NW corner of Alma School and Queen Creek. Maybe we'll see you there!
(these are both "before" and "after"--see if you can tell which is which!)
Our tenative plan now is to first explore if stereotactic radiosurgery is really warranted--that means having another MRI, and maybe a second PET scan. This will happen in the next few days. It would be ideal to do the SR prior to starting chemo, but if we can't pull things together, we could do it in-between chemo cycles.
Secondly, Abby will have three more cycles of chemotherapy followed by infusion of her stem cells. We have cells left over from her previous collection. This is the actual "bone marrow transplant" process--these cycles will kill off all her bone marrow and the stem cells will recover it. The cycles will consist of different drugs at higher doses than she had first time around, so her recovery time will be longer from each.
The first two cycles will be similar to what we had before, just with different drugs. We hope to do this at BDMC--both Dr. Graham and Dr. Abella have said that they would work to this end to minimize the amount of time we have to be traveling. Like before she will be inpatient for 4 days each cycle, then we go to Tucson for her stem cell infusion, then we watch her for the next 10-14 days while she recovers from being neutropenic, and it is likely she will need units of packed red cells and/or platelets.
The last cycle will consist of busulfan and melphalan at very high doses. For this cycle, Abby will be inpatient at UMC for about a month. Dr. Graham made no secret of the fact that this cycle would be unpleasant.
After a quick exam, we were back in the car to run to Amy's parents' to eat dinner and pick up Elizabeth, and then we were on the road and home by 7:30. Whew.
We're going to try to start the treatment as soon as possible, so please pray that we can get all the red tape out of the way. Please also pray that we can get some definitive direction regarding the SR radiation therapy, we have conflicting information now.
On a happier note, we were able to remove Abby's incision dressing this evening. Dr. Shafron had said it needed to come off on Wednesday, but we had no idea where we would be today, so he had Dr. Ha give me a set of skin staple removers and a quick lesson in surgery. (I'm exaggerating, obviously) Abby was very nervous (she had poor experiences with the removal of staples from surgery #2), but I had her scrub up and put gloves on so she could help by taking the staples from me when I was done. She laid her head on my lap and all 6 staples came out with absolutely no problem except the last--it was a little stubborn, and made her cry, but she quickly got over it when she realized we were done. The dressing itself came off without sticking too badly; Abby reveled in being able to scratch all the little tiny itches on the perimeter of the site where her hair is already growing back after the surgery.
If Abby is available, she will be representing Make-A-Wish at one of the Cold Stone locations here in Chandler.
Abby is feeling great. She felt well enough to go to her dance class tonight much to everyone's surprise. It is good for her to get back into a normal routine somewhat. She is already asking if she can go to her homeschool enrichment program on Friday.
Pray for a safe trip for the day on Wednesday and that C.R. and I will ask all the necessary questions. Please also pray for the dealings with the insurance company. They have already assigned us a case manager so we are encouraged that they will be as cooperative as before.
In Her Own Bed
The whole family (including Grandpa and Grandma and Shelly and Haley) came for playground time and lunch. She was overjoyed to see everyone, and by the end of lunch she was worn out. She's napping now.
I also talked to Dr. Graham today and he is setting in motion the things that will need to happen for our consult with him next week. Please pray for us as we weigh the risks and benefits. Steve and Amy reminded us that we still have a *choice* about this. From reading the abstract of Dr. Graham's study on treating recurrent brain tumors with bone marrow transplants, it appears that the event-free survival rate is somewhat encouraging. That study is 7 years old, so Dr. Graham has had lots of experience since then. We will see what he has to say next week.
She is now completely off the IV fluids, and is taking all her meds oral except for her antibiotic, which is being administered through her port with a portable IV pump much like the ones we have used in the past to do IV meds at home.
She also had a quick MRI today just to check for abnormalities post-surgery (bleeding, post-operative shifting, etc), and it looks good.
Dr. Shafron was off this weekend (originally to attend a meeting in New Orleans, cancelled it because he didn't really want to go, and promptly got sick himself), but left us in the capable hands of Dr. Ha (yes, that really is his name) a very kind young neurosurgeon who is now working in Dr. Shafron's practice.
Amy and I were also blessed in many ways today, not the least of which were 1) Abby declared Aunt Shelly could stay with her tonight, so we got to come home together and are spared the tag-team thing for a little while, and 2) Steve and Amy Glover came to visit us at our request on very short notice. We spent a solid two hours or so just processing together, as Amy and I begin to try to grasp what we are getting into with respect to the bone marrow transplant process. What a gift from God they are to us.
I guess there is a small (very tiny) chance that Abby will come home tomorrow. Monday is a more likely day depending on how tomorrow goes.
Before I left, she did ask if we had results about the tumor. We told her that what Dr. Shafron removed was tumor and that we would be talking about what kind of treatment we would need to do next. She looked disappointed, but said simply, "The chemo makes me sick." And then turned back to her popsicle. Lord, help me learn to accept the disappointments of life with that kind of acceptance.
Praise the Lord for allowing everything to work out so smoothly today. And, praise the Lord for answering our prayers about being at a new hospital. We felt very well cared for today even though we miss our friends at Banner. We learned that one of the Child Life interns from Banner who knows Abby is now the weekend Child Life specialist at Phoenix Children's. Abby will enjoy seeing a familiar face tomorrow.
Thanks for your faithful prayers!
She has 3 IV sites, one in her neck, and one in each arm. The right arm is an arterial IV, through which they are measuring her blood pressure.
She is eating ice chips right now. In another 15 minutes, if her stomach is still settled, she can have water, then we will move on to popsicles and juice.
As of now, we're just waiting for them to finish the cleanup from surgery and then we can go in to see her.
Whoops! False start
Off to Sleep
God is good
Psalm 103 (New Living Translation)
Praise the LORD, I tell myself; with my whole heart, I will praise his holy name. Praise the LORD, I tell myself, and never forget the good things he does for me. He forgives all my sins and heals all my diseases. He ransoms me from death and surrounds me with love and tender mercies. He fills my life with good things. My youth is renewed like the eagle's!
The LORD gives righteousness and justice to all who are treated unfairly. He revealed his character to Moses and his deeds to the people of Israel. The LORD is merciful and gracious; he is slow to get angry and full of unfailing love. He will not constantly accuse us, nor remain angry forever. He has not punished us for all our sins, nor does he deal with us as we deserve. For his unfailing love toward those who fear him is as great as the height of the heavens above the earth. He has removed our rebellious acts as far away from us as the east is from the west. The LORD is like a father to his children, tender and compassionate to those who fear him. For he understands how weak we are; he knows we are only dust. Our days on earth are like grass; like wildflowers, we bloom and die. The wind blows, and we are gone – as though we had never been here. But the love of the LORD remains forever with those who fear him. His salvation extends to the children's children of those who are faithful to his covenant, of those who obey his commandments!
The LORD has made the heavens his throne; from there he rules over everything. Praise the LORD, you angels of his, you mighty creatures who carry out his plans, listening for each of his commands. Yes, praise the LORD, you armies of angels who serve him and do his will! Praise the LORD, everything he has created, everywhere in his kingdom. As for me – I, too, will praise the LORD.
GOD IS GOOD! He has been so faithful and He hasn't ever left us. Honestly, I don't feel ready to walk this road again, but we take great comfort in knowing that He promises to be here with us.
This morning we will take the kids out to the zoo and this afternoon we will take Abby to Phoenix Children's Hospital to have some labwork done and to tour their PICU. Please pray for C.R. and I to know when to advocate for Abby and when to abide by the policies of the hospital. I feel a little anxious about learning how they do things at a new hospital. Pray even now for ways we all can show the love of Christ to everyone we encounter at the hospital.
Please also pray for all our children to be at peace. Daniel is much more aware of the seriousness of the situation than he was last year. He is pulling out all his best smiles and charms trying desperately to make everyone happy :) Elizabeth is hanging on to me more than usual-she knows something is happening. And, Josiah is worried and learning to take his concerns to the Lord. It's beautiful to see.
Pray for our families who will be caring for the children while we are at the hospital. They have the hardest job...I know...I do it every day :)
Thank you, thank you, and thank you. We can't say it enough...you all are such an encouragement to us. We so appreciate your prayers on our behalf, your words of encouragement and offers of help.
God Bless you all!
We have a plan
The general consensus is that what we see on the MRI and PET scans is probably recurrent tumor. There is still a chance that it is radiation necrosis, but at this point the only way to be sure is to do surgery. If Dr. Shafron discovers it is not tumor then we know for sure. If it is tumor, it needs to come out anyway.
The surprise came from Dr. Abella, who said there is still a possiblity that we can get rid of the cancer if we do a full bone marrow transplant. Her chemotherapy previously did not kill off all of her bone marrow. It would be an autologous transplant, because we have enough of her own stem cells left from her previous treatments.
There's a lot more to write about all the possible transplant details--as those become clear in the next few days we will keep you posted.
So as of right now she is scheduled for surgery on Friday at 9:00 AM. It will be at Phoenix Children's Hospital. That's a new wrinkle, due to scheduling issues. If we did it at BDMC we would have to wait at least a week, and we didn't want to wait.
So there's lots to pray for--pray her surgery will go at least as well as it has gone in the past. PLEASE pray we will discover that this is just radiation necrosis, and not new tumor growth. Pray for all the little details (being at a different facility, insurance company issues, me juggling work again, etc.) And pray for our other kids. Josiah knows the whole story, and Daniel and Elizabeth have caught on that something is wrong. They need God's peace as much as the rest of us.
He is hoping that he can get a different radiologist to look at the PET tomorrow, comparing it side-by-side with the MRI, and also looking at it himself.
Our goal right now is to get that second read on the PET, and also get Dr. Shafron, our oncologist (Dr. Abella), and possibly our radiation oncologist Dr. Sapozink all together for a meeting on Wednesday so we can decide what to do next. Our options appear to be: 1) Do nothing, because the enhanced area is due to the radiation therapy and is not tumor, 2) Undergo a third surgery, because the enhancing area is adjacent to the original tumor bed, and thus is operable (but with the same risks we had before), 3) Undergo another round of chemotherapy, or 4) some combination of 2 and 3. We are unsure right now if another course of radiation therapy is an option.
Like we have written before, we still ask God "why?"--we don't know what His purpose or intent might be. We can only trust that Scripture has not changed, and that what it told us yesterday is the same as what it says today. That promise is clear, He is the same yesterday, today, and tomorrow. His plan for us remains perfect.
But that doesn't mean it doesn't hurt sometimes.
PET Scan Next
The best way at this point to know what's up is to have a PET scan. Abby had one before, just before her second surgery to help us tell if she really needed the second surgery. If the PET scan shows that those areas are NOT metabolically active then it's nothing to worry about. So that's how we are going to pray.
Abby still feels great, has plenty of energy and is cheerful. Thanks so much for praying!
The second event of our weekend was having to bring Abby to the hospital ER. On Saturday morning, our family attended Josiah's flag football game and went out to lunch afterwards. At the restaurant, she claimed she felt dizzy, had a headache and felt sick to her stomach. She basically lost her whole lunch and continued to vomit on our way home. The thing that concerned us most was that her reactions became almost slow motion and she got a "glazed" look in her eyes. She responded to our questions, but everything took a great deal of time. We called our oncologist who said we needed to bring her in. We spent almost 12 hours in the ER. She had labwork, a CT scan and they gave her fluids with an anti-nausea medication. Neither the labs nor the CT showed anything alarming (preliminarily)...praise God. They need to get her archived CT scans to compare them this week.
Today she is pretty normal, with good appetite, plenty of energy, and cheery smiles. She had a mild headache that dissipated by the end of the day. At the suggestion of the ER physican we're starting her back on the Keppra. Tomorrow we will navigate the medical maze, trying to figure out which of her many doctors we need to consult with next.