Today we went to the oncologist for a followup to check her counts--she is neutropenic now, but her hemoglobin and platelets look OK, thanks to the transfusion she got earlier this week.
Late this afternoon though she started to get warm, and by 7:00 PM or so she had a real fever of about 103. A page to Dr. Abella was returned and we were to bring her in.
Thank God a bed opened up in Peds at BDMC, otherwise she might have had to spend the night in the ER.
Abby was not happy that a return trip to the hospital was imminent. Interestingly enough she took a lot of comfort when we reminded her that God doesn't do things by accident--maybe her visit to the hospital is because He has someone that needs to meet her to learn about Jesus?
We're praying that this visit will be like the others, with her temp returning to normal in just a couple of days. She is already on Cefepime, and is having blood cultures done to make sure she doesn't have an infection in her port itself.
So far.....no fever, so no visits to the hospital! Thanks for praying. You can continue to pray that Abby will stay as healthy as possible while she is neutropenic.
We will keep you posted about her counts and also when her follow-up MRI is scheduled.
"The Lord rules over the floodwaters. The Lord reigns as king forever.
The Lord gives his people strength. The Lord blesses them with peace."
Our relationship with Christ has brought us through the past 8 months. It has also taught us the beginning of what God really means when he discusses Joy in His word. I can't even begin to do justice to the meat of that lesson from Him, but our pastors at our church have talked several times about this over the past few months, the most recent of which was on December 12th by Pastor Nathan (http://faithchurchaz.org/audio/2004-12-12.mp3). We may not know what is in store for us in the future, but we are confident that God will be with us through the joyful and the difficult times.
We will be thanking God for all of you this weekend and we pray that your celebrations will be memorable.
God bless you all!
Amy (for all of us)
Our oncologist isn't concerned about her counts today, though her pattern has been that each day after her chemo her hemoglobin count drops a full point. This puts us in scary territory by Monday, our next oncologist appointment. If she needs blood on Saturday or Sunday the only option is a trip to the ER. We'd sure like to avoid that.
The Child Life staff is throwing her a "Yea Party" at noon today to celebrate being done. It will be good for her. Her spirits are a little low today...she is very homesick and I am certain that she knows that although her chemo is done, this isn't really the end. She is not looking forward to being neutropenic and her neupogen shots. So, pray that we will be able to turn her focus off of her fears and onto God. He has never left us and we are confident He will continue to carry us through the rest of this.
We'll post from Tucson after her stem cell infusion.
Hanging in there
Keep praying that Abby will have a decent appetite and that she will be protected from any virus/bacteria she might encounter at the hospital.
4 of 4 Started
So far she is doing well, other than acute nausea brought on by the decadron dose they give her just before they start the first chemo drug. We hope and pray that will be the only emesis episode this time around.
Now that the holiday season is really upon us, we hope you and yours will have wonderful opportunities to share, give, laugh, and love as this year draws to a close. Thank you again, as always, for praying for us. It has made all the difference.
Thanks for praying! God Bless you all as you prepare for this wonderful season.
On her way back up
Abby will probably start her final round of chemo on December 19. We think we know her pattern enough to predict when she will end up in the hospital so we're praying that starting her chemo right before Christmas will ensure that we aren't in the hospital ON Christmas. Please pray for that...actually, we're praying for no hospitalizations this last time (although we are enjoying the opportunities to make connections with people).
Have a great weekend!
Abby is Home
Abby is now neutropenic. We will continue the IV antibiotics from home and go to the oncologist Thursday to check her counts.
Sunday at about 10 AM we took her temp and it was over 102 F, prompting us to page our oncologist. He was already on the floor at BDMC, and told us to come in right away.
Her labs revealed a neutrophil count of 0, and extremely low hemoglobin and hematacrit levels, as well as low platelet count. Dr. P immediately ordered 2 units pf packed red cells as well as platelets. Her pulse had been really high and thready, indicating her poor little heart was working really hard pushing around what little blood she had left.
Amy and I had decided she would take Abby in and I would join her later. When I arrived at about 4:30 PM one of our favorite nurses on the unit surprised me by saying "your little girl looks SO much better--I couldn't believe how pale she was when she came in!" It's embarrassing, but when you are with your kids all the time you sometimes don't notice gradual changes like what happens when counts fall off after chemo. I knew she didn't look "right", but also didn't want to create an unnecessary trip to the hospital. Next time I think we will err more on the side of caution.
She's already had one unit of the red cells and is working on the platelets now, and is taking a Benadryl-induced nap (they often give Benadryl with transfusions in case of allergic reaction to things in someone else's blood).
Dr. P is optimistic that this might be only a 2 or 3 day stay, depending on how she responds to the antibiotics.
Please pray for us. Specifically pray this will be a short hospital stay and Abby will tolerate all the blood products she is getting. Please pray for me as well--my job has the potential to be very stressful this week.
Falling behind on Thanks!
Only one left!
We are glad to be home again and looking forward to celebrating Thanksgiving together. We have so much to be thankful for!
Please pray for Abby's neutropenia to be short and that she will develop no fevers this time that will require a hospitalization.
Happy Thanksgiving to each of you!
Discharge with a special treat
We're on our way this afternoon so she can get stem cells tomorrow.
Thanks to everyone who has been so faithful to pray. We continue to feel covered.
Amy wrote earlier about the "thankfulness tree" in Abby's hospital room. Anyone who came in to the room had to write what they were thankful for on a leaf and stick it to the tree. We ended up with 25 leaves on the tree!
Speaking of Abby's room-that is an answer to an unspoken prayer. This time Abby was placed in what I believe to be the best room in the whole oncology pod. There are no folding walls between our room and the others and there are actually two sets of doors leading into her room so it is very quiet. I slept with interruptions but I was able to fall back to sleep right away. Thank God for taking care of us!
Abby's counts are fine so tomorrow we go in for chemo # 3. We'll be posting during the weekend. Thanks for praying!
Since she is still neutropenic we just enjoyed a quiet weekend. C.R. and I got away for a quick overnight in town while the kids enjoyed some special time with their Aunt Shelly.
Abby will go have her counts checked on Tuesday and she is scheduled to start chemo # 3 on November 17.
C.R. stayed with Abby at the hospital Saturday night and was ready Sunday at noon for me to trade places with him. We wanted to avoid driving Josiah, Daniel and Elizabeth back and forth to the hospital and also wanted to preserve a much-needed nap time for Daniel and Elizabeth. So, I was calling around looking for someone to come to the house to watch the kids while we traded places. I wasn't having any luck when I talked to C.R. an hour later and he suggested I try to find someone to go to the hospital to sit with Abby instead of finding someone to watch the rest of the kids at our house. I made a call to my friend, Marilyn and spoke with her husband. I was surprised to hear that she wasn't at home, but that she was on her way to the hospital to see us. She had read our post that Abby was back in the hospital and thought we could use some encouraging so she got in the car and headed out. Wow!
Maybe God allowed Abby to be in the hospital just so we could see that glimpse of His hand in our lives.
This morning her counts came back showing that she is now neutropenic so we'll be watching to see when they go back up again. We're obviously praying that will happen quickly.
Everyone is in good spirits and despite being tired we're doing well. Thanks again for your faithful prayers!
They will probably culture her blood to check for bacterial infections and give her IV antibiotics. Then, starting tomorrow I will annoy the doctors daily until they let us take Abby home to administer IV antibiotics from here :)
You can pray that Abby's fever will stay low and that the Lord will lift her spirits. She cried and said, "I don't want to go to the hospital, I want to sleep in my own bed". She is getting soooo tired of being hospitalized and this time she won't even get to go to the playroom since she is probably neutropenic. I'll really push for having them let her walk out to the patio with her mask on. She desperately needs to have a change of scenery sometimes. You can also pray for the rest of us. C.R. and I haven't recovered physically and emotionally from the chemo hospitalization yet. Also, poor Josiah was sobbing when Abby left (Daniel joined him when he started to feel left out).
We're certain God is still in control, but now is one of those times we want to ask, "why?". May He continue to do His work in our lives and in our circumstances.
2 down, 2 to go
Right now we are in Tucson for her to receive her stem cells and she is feeling much better than last time. She never got a headache (we think her headache last time was due to the sinus infection).
We'll head back to Chandler tonight and she'll have labs 2-3 times a week so we can monitor her counts. Please pray that she won't develop a fever this time and end up in the hospital while her counts are low. You can also pray that her counts will go back up as quickly as last time and that Abby will handle her neupogen injections as well as she did last time.
Abby had a great birthday. She had a fun party painting pottery with a few friends and then had dinner at Rubios.
On Sunday morning the hospital had her bed ready by 9 so off we went. Abby has been working really hard recently on dealing with her "pokes" without screaming and her port access Sunday was an amazing experience. We had been praying that her "poke angels" would help her be brave and she likes the idea that they were celebrating with her on Sunday. She barely whimpered when they accessed her port.
She started her treatment with fluids and then received her first 2 chemo drugs. She felt fine. Her first night went well. We decided to give her the anti-nausea drug, Ativan right before bed this time since night was when she got sick with her first treatment. So far, that plan has worked both nights. Not only has it kept her from vomiting, but since she is asleep, she doesn't notice the side effect of dizziness. She was a little tired on Monday during the day, but only vomited once. So far today her appetite is gone and she has been sleeping a lot, but again, no vomiting. Also, they have been giving her magnesium and potassium with her fluids to keep those levels normal. She dropped quite low with her last treatment.
So, our prayer is that she will continue to respond well to everything and regain her appetite quickly once the drugs are flushed out of her system. We should be discharged sometime tomorrow and will head to Tucson for her stem cell infusion on Thursday.
Thanks again for your fervent prayers. He is listening and answering! Praise God!
Praise God with us that her counts look good as we begin. Also, praise God that we have a great primary care pediatrition. They have been incredibly helpful in getting our kids on the priority list for a flu vaccine.
You can pray for decent sleep for Abby and mom in the hospital...especially that we'll be able to keep her vomiting under control and also keep her magnesium and potassium levels good.
She gets a whole week off and doesn't need to be back in the office until next Thursday. Yeah!
Counts are Up!
Of course, when we left today I arranged everything and packed lots of stuff to keep Abby busy anticipating a trip to the POTC for a platelet infusion, but that was unnecessary. I won't complain, though.
Abby is scheduled for round 2 of her chemo to begin on October 24. Keep praying for her to build up her strength in preparation for that.
First, Abby is now quite the pro about her self-injected shot. She just goes at it without a whimper and chants, "go away" until the neupogen is injected. She is telling the needle to "go away" instead of screaming :)
Second, as C.R. posted last, she was declared neutropenic on Monday (meaning her counts were below 500...actually they were at zero). However, by Wednesday her counts were almost to 300 already. Now, we don't know how typical this is as every chemo protocol is different and every patient responds differently. However, we do know that the average of the patients who receive this identical protocol from the research study were neutropenic for about 2 weeks.
So, we're home for the time being and enjoying it greatly. Abby was thrilled to enjoy a sleepover with her best friend tonight. She brightens up like a sunbeam when she gets to be a regular kid. Thank God for simple blessings!
Long day became a long week
I talked to Amy a little while ago and it looks like Abby will be released today. Her counts are on the way up again, though she might require some more platelets on Monday. She is going to continue the IV Cefepime at home via home health.
It will be so nice to have her home.
Her labs also indicated a need for blood and platelets so she was sent over to the Pediatric Outpatient Treatment Center at the hospital (which we will probably be visiting often so I'll start referring to it as the POTC). They returned home at 6:30 and we discovered after dinner that the low grade fever she has been manifesting the past 2 days had gone up to 102 degrees. So, the oncologist ordered her back to the hospital (fortunately they got to go straight to the Oncology Pod on the Pediatric floor).
My guess is that they will start her on fluids and IV antibiotics as well as culture her blood looking for infections.
You can pray that her hospital stay will be short, that they will find and treat the source of the infection quickly and that our family will survive being pulled in different directions once again.
Also, her headaches have ceased, Praise God. Thanks for praying for that. Her appetite is picking up a little. So, we're not as concerned, but do keep praying for that.
We will visit the oncologist on Monday to check her counts to see if they have "bottomed out" yet (meaning she has fallen below a certain number of white blood cells and other infection-fighting cells). Please pray that once that happens, her stem cells that we infused will do their job and start building up her immune system again.
A reason for headaches
We're so proud of Abby. She is having to swallow about 8 pills a day in addition to drinking her regular medication (and they aren't tiny pills). I can't believe she is actually able to swallow it, but as much as she hates it, she does it anyway. In addition, she also has to have an injection of neupogen every day for 14 days following each chemo treatment. She has decided that she wants to learn to do it to herself.
Abby's appetite isn't very good, but it's hard to tell if it's a result of her chemo or her congestion. Please pray that her appetite will pick up and that she will become interested in some favorite foods again.
Now, she is starting to complain about her mouth hurting. One side-effect of one of the drugs is jaw pain so we are guessing that is the case. I'll talk to the oncologist tomorrow.
She will need to be seen by them about 3 times a week right now so they can monitor her counts closely. They should drop in 7-10 days and then we pray they will recover quickly (ideally within 14 days). The stem cells should help the recovery process move along quickly.
Abby is glad to be home and we are thankful to be together as a family again. I think sleeping all night long in her own bed is going to do her a world of good. It was a long 5 days, but we praise God for getting us through it. Thanks again for all of your prayers.
Thanks for praying
So, now she is finishing up her post-chemo fluids and medications and then we are off to Tucson.
You all can continue to pray for her headache to subside. Dr. Abella says it should let up no later than Wednesday, but we have pain medication to use until then.
They are delaying today's chemo treatment until her electrolytes look better. She was to begin that at 11 am and it will be delayed about 4 hours.
I was comforted this morning by a reminder from the Lord that the angels who were ministering to Abby during her radiation treatment are also with her in the hospital. Please continue to pray that we will feel God's presence. He is our strength.
Another interesting symptom Abby has been suffering from (which the nurses insist isn't a result of the chemo) is that she has had hiccups 5 times so far today and they have lasted up to 30 minutes each time! If that is the worst of her symptoms then, we praise God!
Keep praying for her kidneys and bladder to be protected from damage. They are giving her preventative medications to help that. You can also pray for an ability for Abby, C.R. and I to fall back to sleep easily. They have to check Abby's urine every 2 hours day and night so we are interrupted OFTEN!
Thanks for keeping us covered!
So here we are again at Banner Children's Hospital (they just got permission to change the name of the Children's Center), admitted this time like clockwork. She is being pre-hydrated now and will start the first of the three chemo drugs, Cisplatin, as soon as they think she has enough fluid on board.
One of Cisplatin's side effects is possible hearing problems in the upper registers. We had her hearing tested just a few days ago so we would have a baseline to compare with. Please pray for this issue, as well as for good tolerance on her part against all the other myriad side effects these drugs bring. The other two drugs are Vincristine and Cytoxan.
The chemo regimen will last about 3 days, we will have a day of post-hydration, then we go to Tucson to infuse stem cells.
MRI Preliminary Report
No chemo yet.
The MRI took about 45 minutes, and we went for lunch and to A & P's office to check her blood counts in preparation for tomorrow's chemo.
However, Dr. Abella surprised us by expressing some concern about the mild cold Abby had caught. He felt it would be wiser to have her recover from it over the weekend and start her treatment next Thursday, rather than run the risk that chemo-induced neutropenia would cause the cold to develop into something much worse.
I can see God's hand in this--as Amy wrote earlier she has been fighting a nasty infection herself, and as I am writing this we are in *her* doctor's office for a followup appointment. We were not looking forward to trying to manage Abby's chemo if Amy could not be at the hospital.
Dr. Abella took a quick look at Abby's MRI and thinks it looks promising--though there a couple of areas of enhancement, they could be from radiation. We await the official radiologist's report tomorrow and may go for a PET scan to ensure the enhancement is not active tumor.
Thank you all for praying, especially for Deb and Irene from my office for organizing the round-the-clock prayer vigil that went on yesterday and today. What an honor that 63 people from over 10 states, some of whom we don't even know would take a half-hour out of their day (and night!) to pray for us.
As for me, my cold will not give up. In fact I felt my ears close up on Tuesday and took that as a signal to get over to my doctor. She confirmed my suspicions that I had developed an ear infection and gave me some antibiotics. They seem to be helping a little but my ears are still closed up. I had a similar infection about 10 years ago when I was teaching and they finally had to give me some steroids to reduce the swelling. Please pray that this will work its way out soon and that I will be up for what's in store for us this weekend. I would feel terrible to not be able to help out at the hospital.
We're scheduled for the MRI at 10 am tomorrow. Dr. Shafron isn't available to go over the results with us so they will be giving us a disc and our oncologist can call the radiologist and get the report later in the day. If you don't get an update from us tomorrow with the results you can assume that for some reason we couldn't get them. If we know something, we'll post it.
Then, Friday we wait for a call from the hospital to tell us when a bed is ready for Abby and her chemo will begin. We feel comfortable following the protocol designed for the neural tumors (which matches the ATRT diagnosis and the PNET with Astrocytoma Differentiation diagnosis). So that is the one we will go with.
Thank you for praying with us. We know you all are covering us and that will help us endure all the waiting and trials to come. God Bless!
Back to normal
You can be praying that I will be able to shake a nasty cold that Daniel and Elizabeth gave me and that Abby will not get it at all or at least not as bad.
We are so grateful for all your prayers and words of encouragement.
A little better
We also now have the chemo schedule. Abby is scheduled for a start date of September 17 when she will be admitted to the hospital for 4 days and we will go to Tucson on Tuesday, September 21 for her stem cell infusion. We'll keep you posted on that timeline if anything changes.
Thanks for praying!
We celebrated our Fall birthdays, watched the last days of the Olympics, and just played.
Before we went to the hotel Amy and I noticed Abby running a fluctuating but low-grade fever. She also seemed unusually tired, but snapped out of it while we were at the Pointe, though she did nap. Yesterday and today, however, she has slept a great deal more than is normal for her.
Dr. Sapozink (our radiation doctor) warned us that we might see this behavior, but we didn't think it would happen this long after she stopped radiation therapy. She has no other symptoms really. You might recall that this was one of the precursors to her first seizure--the two mornings prior to the seizure she slept unusually long. Now she is on Keppra, so we are worried that the tumors may have returned but the Keppra is suppressing the seizures (as it should).
Amy and I had picked today to fast until evening and pray for God's guidance surrounding if we should have another opinion, or proceed with the chemotherapy. So please pray with us--I am taking Abby to the oncologist this afternoon to see if we can figure out what is going on.
We plan to pray about what to do next and consult with our oncologists, Dr. Packer, and others. We may seek yet another opinion or try to get the different pathologists to possibly have a phone conference to achieve some sort of consensus. We may also proceed with the chemotherapy protocol and stem cell infusion which was the original plan. The treatment for the ATRT and for the PNET type of tumors are the same.
So, please continue to ask God to guide all those involved in Abby's case. Also, pray that we will come to a timely conclusion. She has an MRI scheduled for September 16 and her first chemo treatment will be about 2 weeks after that.
In the meantime, we're all enjoying being a normal family again free from the chicken pox!
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.
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.
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.
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.
Better every day
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.
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.
Abby's Uncle Roy - update
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.
Half way point
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.
Fun Fourth and Port Placement
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.
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!
Catheter to be removed today
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.
Bacteria are back
We are disappointed, but I do have a sense from God that like everything else there is a good reason for this. It still is hard to take--to explain again to Abby that she is going to have to have two more (minor) surgeries--one to remove this catheter, and another to insert a new catheter or port sometime closer to chemo starting.
Praise God that her bloodwork since leaving the hospital has produced NO signs of infection. Please continue to pray for the infections to stay away!
Finally, a few pictures
God's mercy and providence is evident in His selection of Debbie to work with us. She is also a believer and goes to a large church up in north Mesa just a couple of minutes from where we used to live. This has made all the difference for us because we share the same world view and belief system. I think it makes it easier for her to deal with us too.
I can't imagine what it must be like for her to work with so many cancer kids. She likes to say she has the best job in the world because they pay her to play with kids.
Last Thursday Dr. Shafron made good on his promise and came to Abby's radiation treatment to remove her staples while she was sedated. It was such a relief not to have to put Abby through that trauma, even though removing staples really doesn't hurt (usually). It just pinches a little. Abby is so happy to have the staples out. Since then her incision has cleaned up very nicely and Amy has been able to rearrange her hair so you can't even tell she had surgery.
I promised a long time ago that I would post the famous fiducial picture as well as a picture of Dr. Shafron, and so here they are.
Radiation continues to go well, though Debbie told me today that kids get more tired as the treatment wears on. Amy and Josiah will go with her tomorrow to her treatment, and then out to breakfast and to Dr. Panchoosingh/Dr. Abella's office for a followup appointment to do a blood draw and check to make sure the catheter infection is still at bay.
It feels good to have actually reached the point where we feel like we are doing something that will make a difference in the long term for Abby. She is tolerating the radiation well so far, so we are optimistic for the first of the two major components of treatment. Knowing that God has brought, and continues to bring, loved ones like all of you makes it possible for us to see the long road ahead with far less discouragement than we would have if we walked it alone. Thank you for allowing God to use you.
Home, Sweet Home!
Radiation treatment # 3 is done and things are still going smoothly there. Thanks for your prayers on our behalf.
So far so good
And, so far today the Red line is showing no signs of bacteria growing. They drew that blood early this morning so the further away from that time we get, the better off we are. Unfortunately, it can take up to 5 days to start growing. The lab will phone the nurses station immediately if the culture starts to produce bacteria so in this case no news is good news.
Optimistically, if nothing grows by tomorrow, we may be able to bring Abby home and continue antibiotic treatment ourselves.
Radiation treatment # 2 went well this morning. I'll let C.R. report on that since he was the one to go with Abby today.
Another block and Dr. Packer
Also, I spoke with Dr. Packer in DC this morning. He just returned from the research symposium where he heard about the most recent studies. He was pleased to hear that Abby's 2nd surgery went well and that we started radiation. He says that the protocol we are following (which is the same one his team uses as well as St. Judes in Tennessee) is showing the most promising results.
I'm off to the hospital shortly to change shifts with C.R. so he can go to work. It was nice to sleep in a room free of IV pole beeps and at a temperature that doesn't require 7 layers of clothing. :)
Blue line clear/Red line still infected
This treatment session lasted an hour, but it will usually last 20-25 minutes. They needed to do some imaging for the first part of the session. Abby woke up from the sedative smiling and talking, drifting in and out of sleep.
Upon our return, we found that they had moved her from one room in the regular PEDS floor to another room in the oncology pod (we didn't mention that she was moved out of ICU yesterday afternoon and onto the regular PEDS floor.) Her new room has a nice view of the "Froggy Playground/Garden" which brought a smile to her face.
Another Pediatric Infectious Diseases doctor came to see us today and informed us that the infection in the blue line of her catheter is looking clear from her blood work today, but the red line is still infected. They are still giving her broad spectrum antibiotics and we're praying that the red line will clear up. The Great Healer doesn't need antibiotics, but He can certainly help them along, right? It sounds like they will want to remove the Phoresis if the infection doesn't clear up in the next few days. We don't know what that means as far as delays in her radiation treatment. We'll know more tomorrow.
Dr. Panchoosingh also informed us today that her hemoglobin was low (7.7) so he ordered a transfusion for her. She had that done this afternoon. The doctor said that considering her surgeries, he is not concerned about her being low.
Abby was very disappointed to have missed the Holy Moses performance and still chooses her Holy Moses CD every time she listens to music. However, our family ended up not being represented at all. We received a call 20 minutes before the show was to start saying that Josiah had a fever and a sore throat (probably the same thing Elizabeth had). So far, C.R., Daniel and I have been spared. Please pray it will stay that way!
Abby is having some pretty down times. She looks so sad sometimes and says things like, "Mommy, I don't want my hair to fall out". Somehow, "I know, honey" sounds so trite...it's very hard to imagine what a 5 year old needs to hear. But, thankfully, she still giggles at Tom & Jerry cartoons and smiles when she hides her can of cheesy Pringles from Daddy. And, last night her only prayer was that her brother, Josiah would get well soon. What a blessing!
Radiation Therapy to Proceed
This is good news, finally we will be able to start adjuvant therapy.
Gram negative rods
Because late last night the first blood culture had yielded some results they had already started IV antibiotics. If she continues to tolerate them well there is a chance we can beat this infection without needing the catheter removed.
But what about radiation therapy? The intensivist tells us that the infection is too serious to start the therapy tomorrow, and in fact she may be in the hospital at least 3-5 more days. We're worried about tumor progression since the new nodule had grown so much before we got to the second surgery. Please pray that again we will have wisdom about her care, that we would be starting radiation at exactly the right time, and that we can cure the infection without needing to remove the catheter.
The CT scans were not alarming, praise God. There was some concern about meningitis and talk of another spinal tap to see if that was the case. However, when Dr. Moss (Dr. Shafron's partner who is on call this weekend) saw the CT scans and the ICU intensivist examined Abby, they thought that meningitis was unlikely. The ER doctor and the ICU intensivist also examined Abby's throat and neither saw any inflamation of her tonsils.
A urine sample was collected in the ER and the analysis from that seemed to indicate a problem. They decided to collect a sterile sample with a catheter (which Abby did NOT appreciate) to get an accurate analysis. We are waiting for the results of that sample.
Abby is settled in with Daddy in her new room (we've now had ICU rooms 9, 7 and currently 5...nice pattern for working on a math lesson with Abby!). Our prayer is that they will be able to isolate the source of her infection and be able to get her going on the right antibiotic asap. She REALLY wants to at least attend the performance of Holy Moses tomorrow night. She has had such a fun time at choir camp and she has worked so hard learning the songs and the moves, so we are praying she'll at least be able to watch the performance in person.
As always, thanks for your prayers!
This morning after we got up, however, Taryn called us again saying that Abby's fever was over 104, and even had spiked to 105 when she had taken it one time. We decided not to take any further risks, and had the family call 911.
So we're in the ER at Banner Desert right now waiting for the ambulance. We're not sure what they will do--probably order a CT scan to check for bleeding and swelling in her brain, and maybe start her on IV fluids to make sure she does not dehydrate.
Please pray that this visit will be brief, and that Abby will be able to handle the IV they put in her arm. We learned that typically EMTs don't mess with catheters, they always want to put a fresh IV in. Abby doesn't appreciate IV's very much anymore. :-)
No Drano Needed
Another immediate prayer request we have is that one of Abby's catheter lines is clogged. I discovered this when I was trying to do the nightly heparin flush. She is going in to see Dr. Abella (the oncologist) today and he has some ideas for unclogging it. Please pray that we can remove or dissolve whatever is causing the line to be stuck.
Drain removed and released to floor status
First, praise God that the MRI people allowed both C.R. and I to go in the room with Abby on Friday. Despite the fact that she had a hard time part way through, they got all the scans necessary for the surgery! Also, our Child Life Specialist, Debbie, did an awesome job keeping us on track for everything we needed to do that morning (having blood drawn, paperwork in admitting, pre-op stuff including the fiducial placement, MRI, and back to pre-op). She made phone calls and arrangements that would have been impossible for us to take care of. We also got to know her a little better and learned that she lives about 10 minutes from our current house and goes to a church near where we used to live in Mesa.
I have a lighter side-note about the fiducial placement process you might enjoy hearing about. The same person ran the stealth guided imaging equipment for Abby's first surgery and this one. We call him Mr. Tim. Last time he offered to give Abby a fiducial for her bear. This time she chose Daddy to be the honorary recipient of her extra fiducial. Mr. Tim let Abby choose where to put it. She placed it on Daddy's neck under his right ear. C.R. received a number of strange looks, questions and comments about it during the surgery. However, it was most amusing when Dr. Shafron came out of surgery to give us his report. He was in the middle of a very detailed description of the surgery and he paused, stared at C.R. for a minute and said, "Did you know you have a fiducial on your neck?". Abby has since declared that C.R. cannot remove it until she comes home. I think he'll be begging Dr. Shafron to release Abby for his sake. She is appreciating Daddy's willingness to share a little in her trials.
Last night was much better than the first night as far as our sleep. Abby woke up on her own about 2 or 3 times and the nurses just used those times to check her vitals etc. It was great to have longer stretches of sleep.
Today, we saw Dr. Abella. He said he had spoken to Dr. Graham about Abby's platelet counts. Dr. Graham said it is quite normal for her counts to be down for about 5 days after the 2 stem cell collections. I believe he said this is because they can't prevent pulling out platelets as well during the process. In any case, her platelet count is now at about 145,000 and they like it to be at about 150,000 for a child Abby's age. So, that's no longer a concern.
We also saw Dr. Shafron. He came in to remove Abby's drain. They gave her a sedative and she was great for the whole process. She did cry, but she sat perfectly still. We decided to take advantage of the effects of the sedative and remove her wrist IV. C.R. used the good old adhesive removal pads (which are becoming our good friends) to get rid of the nasty tape. This was quite a traumatic experience for her. But, soon it was done and she was rid of yet another attachment.
Dr. Shafron said she looks great and he released her to floor status (meaning they no longer had to monitor her vitals constantly and she could go to the regular PEDS floor if a room was available). He also said that he would come by tomorrow and if she still looks good, he'll change her dressing and discharge her!
We ended the day with a visit to the playroom where Abby read some books with Daddy, painted a picture and played on the computer. Then, we took her to the cafeteria for dinner with Grandma, Grandpa, Josiah, Daniel, Elizabeth and C.R.'s sister, Adrianne who flew down from California to help out. Finally, she got to enjoy a quick trip to the Froggy Playground with everyone. It was great to see her walking around and "climbing the rocks" (with help). We realized that it just took her one extra day to bounce back this time. It still amazes me how quickly she is wanting to be up and around.
Thank you for your constant prayers. We are continually grateful to all of you and we praise God for his goodness throughout our trial.
Up and Around
Today was a pretty good day. It started off rocky, Abby was quite unhappy in the morning. Everything seemed to hurt, or wasn't right, or was uncomfortable.
As the day wore on we began to get a better handle on when she needed pain meds. She got the Foley out (boy she didn't like that), and we saw Dr. Shafron in the early afternoon. He said she was doing very well. He checked her left side and her peripheral vision and both look really good. Thank God! That is such a huge praise for us, given the amount of brain tissue she had removed. Further assessment will reveal if she has any greater impairment than that from the first surgery, but God has clearly blessed us greatly.
Dr. Shafron gave her permission to get up, so in no time we had her out of bed. She used the bathroom, and we gave her a sponge bath in the chair next to her bed. We even took a walk around the unit down to the little galley they have at the end of the hall for a "treat" (saltine crackers). Her balance is a little off, but we had to ask her to slow down!
Dr. Shafron says tomorrow he will remove the drain. Please pray for that procedure. They will provide some sedation but she will not be asleep. He needs to remove one stitch, then remove the drain, then stitch the drain insertion point back up with one or two stitches.
If the drain removal happens early enough in the day we will try to gather the rest of the family up and take them to visit Abby either at the froggy playground or in the pediatric playroom at the hospital. It is touching how much all the kids miss each other when she is in the hospital. Abby is particularly missing Josiah. She told Amy tonight that she was sad because everybody was home and she was not.
Dr. Shafron also wants Abby to have another MRI on Monday. He is going to ask the MRI techs if they can just do the one scan sequence that gives him what he needs. If they can do just that sequence then it should only take 10 or 15 minutes and she should be able to be awake. Please pray for her in that, she was quite apprehensive about doing another MRI without being "asleep" after her claustrophobia episode yesterday.
Thanks again for all the prayers. We're optimistic we can get home soon.
Nighty Night, Sleep Tight
She is definitely not recovering as quickly this time as last time. She was finally perking up a little bit when I left, and was drinking water. She needed almost a full unit of blood, and they went ahead and finished the unit after she returned from surgery, and also gave her some red cells.
An odd wrinkle that came up was that her platelet count was low when we went in for surgery. Nobody's sure why this is yet--could be something to do with the line placement, or could be related to the cancer if it had spread to her bone marrow. They think the spread to the bone marrow is extremely unlikely--nobody has seen an ATRT or PNET-style tumor spread to the bone marrow. This was one reason she needed so much blood, in addition to replacing what she lost in surgery.
Thank God she is moving extremities on her left side (arm, hand, fingers, toes). This is a good sign. We'll see about peripheral visual field issues tomorrow.
She has staples now instead of sutures, and he needed to install a drain which can come out in a day or so. We're waiting for them to let us into her room.
Dr. Shafron could not give us a good idea when he would be done. He needs to resect a larger area than last time, and he warned us that some area is infiltrating tumor, so it takes longer to take out (he has to be a lot more careful not to get healthy tissue).
It's about 5:20 now and we have had one update from the OR. She had no trouble with the anesthesia, but still no word on when they will be done.
Stem Cell Collection Done, and Surgery #2
The collection time takes about 3.5 - 4 hours including setup and teardown.
Like last time, she did great, and was a little tired at the end. The nurse told me that they actually collected almost everything they needed on Monday (she said they collected a "7", which is "very good"). Today they got the rest.
Tammy the nurse and hemo tech was very compassionate and professional, she took such good care of Abby. She never left the room during the whole procedure, and watched her closely for signs of reaction to the transfused blood. It was so nice to have her for both sessions. Abby is starting to have trouble with new faces, she has seen so many of them, and she never knows if a new face is going to be associated with something painful. So having Tammy both times was quite special.
Near the end of the collection Amy called me to tell me the results of the PET scan were back, and they show high activity at the new lesion site and "medium" activity at the original site. Dr. Shafron now says that a second surgery is "warranted." We are scheduled for Friday at 10 AM.
One wrinkle is that there is no anesthesiologist available for the pre-surgery MRI that they use to place the fiducials (the little buttons that help build the map for Dr. Shafron to use during the surgery). Abby has not yet had a non-sedated MRI. It's only supposed to last 20 minutes, but we cannot be with her, she must be completely still, and it is VERY loud in the MRI chamber.
Besides prayer for the surgery itself, we would appreciate prayer for what to do about the MRI. If she cannot be sedated, should we still attempt it? If we insist on sedation, then they will probably have to reschedule the entire surgery for later next week, which further delays her adjuvant therapy. Our oncologists are already somewhat frustrated with us (or just with the timing, we can't really tell) that it has taken so long to get to the radio/chemotherapy part of her treatment.
As for the surgery--Amy and I are just sick over having to send her to once again have someone poke around in her brain. We have a huge amount of trust in Dr. Shafron, he has been so good to us. Every time he resects, however, there is a greater chance of impairment. This is very scary. Again, we know God is in control, He has reasons for all of this we know.
I would like to believe that the second surgery is the result of our trip to DC--as we said before, if we had not gone to DC we never would have had the latest MRI, and the second lesion would have remained unfound until it grew much larger and she manifested other symptoms or we did another MRI two months into the radiotherapy.
As I write this, Amy has also posted her own update, so today you get both viewpoints. :-)
As we have both told everyone often, your prayers mean the most to us in all of this--knowing that all of you are interceding for us before the Throne is so comforting.
Stem cell collection and second surgery
Dr. Shafron called today with the results of Abby's PET scan. He said that he and Dr. Kaplan agree that there is enough activity around the original tumor bed and in the new nodule to warrant a second surgery. Unfortunately, he also said that there isn't enough research to give any indication whether this resection will change the outcome of her treatment. He said the risks of post-surgical motor weakness and peripheral vision loss are greater this time (30-50%), but this varies with each patient. Her recovery in the hospital could be up to a week.
As far as prayer requests... Please pray for Abby to have peace about another surgery and extended time in the hospital. She shouldn't have to have any pokes while she is awake as far as we know since she has the central line. But, I'm sure there will be other things she is anxious about. Also, Abby will have to do the pre-surgery MRI (the guided imaging mapping with the fiducials) without anesthesia (there is no one available). I spoke to the Child Life Specialist today and she is arranging for someone to be with Abby during the fiducial MRI and into the pre-op room. I asked about one or both of us being able to go into the MRI and Marci said she would advocate for that on our behalf.
Pray that God will use us all to be a light to everyone we'll come in contact with at the hospital. Hopefully, we'll see some familiar faces and meet some new people as well. We know God has His hand guiding our path and he has us going back to the hospital for a reason.
Pray that Dr. Shafron will have wisdom and skill in the surgery and also pray for everyone who will be working with him.
Official Spinal Tap Report
Good collection and Dr. Kaplan
Our meeting with Dr. Kaplan went well. Dr. Shafron wasn't able to join us in person, but the two doctors had met earlier in the day to review Abby's case and the MRI's. Dr. Kaplan spoke very, very, very highly of Dr. Packer (both as a friend and colleague). Dr. Kaplan is the "link" between our Arizona team and Dr. Packer in DC that we have been praying for. He is the head of the neurology department at Phoenix Children's Hospital and he knows Dr. Packer very well.
So, our next step today is to do a PET (C.R. will have to tell you what it stands for) scan. We will go to Good Samaritan this afternoon. We were glad to tell Abby that it is a "no poke, no sleepy medicine" way of taking more pictures of her brain and we get to be with her the whole time. We are told the machine is similar to the CT scan equipment and it doesn't make noise. She has to lie still for about 20 minutes with her eyes closed. (I'm glad we're asking Abby and not Daniel to accomplish this!) This scan will make it very clear whether another resection of the original tumor bed is necessary and if so, how much. It will also give more information about the new nodule. We are praying that God would choose to show His power by having the new nodule be gone or smaller and the original tumor bed be inactive (no signs of residual tumor). However, we're praying more for His will in this. We know that His plans are much greater than ours and He has a reason for everything that is happening. May He be glorified in everything that happens today.
This morning Josiah and Abby are off to choir camp to practice Holy Moses! They are so excited. Abby knows she will have limited participation, but she is still thrilled to be going today.
We had a good conversation with Abby and Josiah about the radiation side-effects. Thank you all for your prayers. I will post a more detailed report on this soon.
Further thoughts on surgery
However, Dr. Shafron offered to come up and discuss this again with us during our neurologist appointment at Phoenix Children's Hospital tomorrow afternoon. So it will be good to have both our neurologist and our neurosurgeon in the same room to continue to hash through this. This is definitely a prayer point for us tomorrow.
During my quiet time today God brought me again to James 1:5, which says "But if any of you lacks wisdom, let him ask of God, who gives to all generously and without reproach, and it will be given to him." (NASB) What a great and glorious promise, especially for us at this particular time. We certainly have asked repeatedly, and with the faith that is required and mentioned in the following verses.
We are still on track for the first stem cell collection tomorrow at 8:00 AM.
On a lighter note, Abby was invited to a Mary Kay party today. Her favorite Mary Kay product of the day was "Satin Lips" (see attached picture). She had lots of fun being a lady with the rest of the women, though the promise of watching "Tom and Jerry" (her favorite cartoon right now) did eventually lure her away. :-)
The second dose of Nupogen was given by a home health care nurse at my parents' house. She trained C. R., Abby and I how to administer the 7 syringes of flush and medication to her lines. Abby is already getting to be an old pro. She insisted on being the one to plunge the syringe on everything she was permitted to. We may have a future nurse here!
Phoresis Catheter Installation
Once the initial paperwork was complete we were ushered back to ambulatory surgery pre-op, where we met Dr. O'Connor, a jovial woman with a great attitude. She was to install the catheter. She told me a lot about the device (a "Phoresis Catheter"). It is a "large" catheter. This was conjuring images in my head of 3/4 inch PVC pipe sticking out of her chest. Those of you that are aware of my ordeals surrounding the sprinkler system in our first house can imagine how this made me feel. (Short story: we installed it ourselves and about half the joints did not end up with PVC cement on them, so I had to replace most of the connectors in the first 2 or three weeks. I dug up that yard so many times I felt like a coal miner.)
Further inquiry revealed that the exposed part consists of two tubes not much larger than a #2 pencil.
The spinal tap was not on the schedule, we expressed this to the staff, and they promised to contact Dr. Graham about that.
Moments later, they announced they were ready for her, and took her back to surgery.
Surgery took about 2 hours. About halfway through Dr. Michael Graham visited us in the waiting room. Another example of God's providence for us--he brought the consent paperwork for the spinal tap out personally for us to sign. Even in the midst of an emergency on the floor he made time to do the tap himself. We should have preliminary results this afternoon.
We also met Ana Villela, who works with Dr. Graham in the pediatric bone marrow clinic (PBMC). She has been scheduling all our appointments here at UMC. Ana is a petite, cheerful Latina, who I think we will be seeing a lot over the next week.
We are scheduled to visit the PBMC in a couple of hours to do the first dose of Nupogen (delivered via the new catheter, it takes between 20 and 45 minutes). They will also instruct us in caring for the catheter and the site surrounding it. We're also going to get an infusion pump because we will need to administer the Nupogen twice a day for the next week.
Abby is awake now recovering from the anesthesia. As usual, she is hungry. Funny how good that makes a parent feel, when your child says "can I eat now?"
We're planning on staying the weekend in Tucson, doing the first stem cell harvest Monday morning at 8:00 AM, and trying to make our neurologist appointment at 2:00 PM in Phoenix.
Thanks for praying.
Radiation Therapy "Fitting"
They needed to sedate her to make sure she was completely still while they made the body mold and mask. These items are created just for her to make sure that during the treatment they irradiate the exact same areas each time. They also gave her little tattoos on her back to help them line her up during the treatments. You really have to look to find them, they are very small and probably over time will fade. Amy and I always told each other we would never let our kids have tattoos. Oh well. :-)
The fitting took about 90 minutes. We promised her that if she did well she could choose a restaurant to eat at afterward (she needed to fast because of the anesthesia), and true to form, she picked McDonald's, because she wanted fries. Our daughter the gourmet!
We were done by lunchtime.
Later in the day we had communications from Dr. Graham (stem cell expert at UMC in Tucson) and Dr. Panchoosingh. Praise God, the approval for the stem cell therapy came through from the insurance company. We actually have a new case manager with Cigna, our case is now in a new cost bracket, so they transferred the management to another person. Please pray that we will have as good a relationship with her (Monette) as we did with the old one (Susan). Susan has offered to be a resource should we need further help.
Thank God that Cigna has been so easy to deal with so far.
One other wrinkle that has appeared is it seems that the decision for a second surgery is now at least somewhat our responsibility. Dr. Panchoosingh and Dr. Shafron want our opinions on what we should do. It's kind of frightening that they are asking us what we want to do.
The new lesion is in the right occipital lobe of her brain. As of the last MRI it is not very large (1 cm in diameter), but it was not on any of the pre-operative, or post-operative MRIs so it seems safe to assume that it has appeared in the last three weeks. Our first take is to try to control it with the radiation therapy, which will start a week from this coming Monday. Our radiation oncologist, Dr. Sapozink, is also ordering a PET scan (Positron Emission Tomography). PET scans show metabolically active cells. Since cancer cells grow quickly, they are metabolically active, and this will give us more information about the nature of the new lesion.
We also have yet to do the spinal tap to test her spinal fluid for malignant cells.
So far she has not been symptomatic, and has maintained her normal, cheerful self.
So please pray that we will know what is the right thing to do regarding surgery. Like I wrote before, God made it so easy for us to get to Washington DC to see Dr. Packer. Had we not gone there, we would have remained under the assumption that there was no more tumor, and Dr. Shafron would not have ordered the last MRI revealing the new lesion.
The radiation therapy will consist of a course whole-brain, whole-spine treatment with focal boosts to the original tumor bed and the new lesion site. Dr. Sapozink is optimistic about the effectiveness of radiation on these types of tumors--maybe the radiation will stop the growth of the new lesion?
We remain optimistic as well. We know God is in control. Some of our prayer and worship times have been so intense, with the Spirit just washing over Amy and me, giving us great peace. These times are punctuated by times of intense fear and sadness. So far the peace outweighs the fear. We keep trying to remember all the verses where God says "do not fear. I AM with you." (Gen 15:1, Ps 112, Jn 4:14, and so many others). He continues to sustain us.
Comments & Email Addresses
We've also had lots of people ask about emailing us. Our email addresses are not readily visible on the site because spam harvesters troll the 'net looking for "good" email addresses. However, if you login to the site you can get a list of site members from the main page at http://family.ncbt.org/. You can find our email addresses there.
Tucson and beyond
Late tomorrow we will head down to Tucson. On Friday morning she is scheduled to have her catheters placed and over the weekend she will receive doses of Nupogen (this stimulates the stem cells to move into the blood stream). Then on Monday she will have her first collection followed by our return to Phoenix for a 2:00 appointment with our new neurologist. Dr. Shafron's office set us up with a great neurologist, Dr. Kaplan, for a very timely appointment. We are eager to get in to see him to get Abby off the Dilantin (anticonvulsant) since she has been on the Keppra (anticonvulsant) since before we left the hospital. Abby will need to return to Tucson on Wednesday and possibly Friday for 2 more sessions before they have all they need. You can pray for safe travels as we make the Phoenix - Tucson round trips (and lower gas prices too!)
You can also pray for some closure on the issue of the necessity of a second surgery. Dr. Packer in DC did speak with Dr. Shafron yesterday but we haven't spoken with Dr. Shafron about whether or not they came to an understanding. Please pray that the direction will be very clear.
We will be talking with Josiah and Abby tomorrow night and over the weekend about Abby's radiation therapy and the more visible side-effects. You can pray that God will give us the words to say and wisdom to answer their questions.
Finally, you can pray for our relationship with our insurance company to continue to be smooth. Our Phoenix case manager has been incredibly efficient and helpful so far. So, we were a little saddened to hear that Abby's case got "too expensive" and was transferred to a regional case manager in California.
I'll close with a funny story from our hospital stay that I've shared with a few people and they all insist I need to post it so you all can appreciate it. We had brought a CD to the hospital with us which has the music for the Children's Choir Camp that Josiah and Abby are to be involved with this month at our church. The musical is called Holy Moses. Well, you know about the seizure Abby had in the hospital a few days after surgery. It was a mild seizure, but she was unable to communicate for quite a while afterwards. She was conscious and attempting to talk, but none of us could understand what she was trying to say. Our oncologist happened to be in the room at the time and he was asking her questions trying to measure the extent of the seizure. She mumbled for a few minutes and he smiled and nodded to her. Then, he leaned in closer to her probably to hear her better. She sat up, looked right at him and declared, "Holy Moses!!" as clear as anything. I'm not sure what he was thinking at that point, but he stopped asking her questions :)
Well, that's all to report for now. Thank you for your continued prayers and encouragement. We know our path ahead will be challenging, but we also know that God will be with us throughout and that there will be many people lifting us up in prayer.
God Bless you all!
Praise God! We did finally get a Dilantin level back from the doctor, and we were right, it was high. That was such a relief. So Dr. Shafron dictated new dosages for it over the phone to Amy late last week and as of today Abby has had no more dizzy spells.
In fact Dr. Shafron even gave Abby clearance to swim, so we went to the Torlas' yearly Memorial Day swim party. We had a great time. The kids all swam their hearts out, we had hamburgers and hot dogs, Elizabeth even experienced her first summer swim. She normally likes taking baths anyway, so being in that gigantic "bathtub" was lots of fun for her!
We appreciate your prayers so much, please keep praying as we think we are going to Tucson this week for the catheter and stem cell collection, and possibly might have our initial meetings with the radiotherapist.
Well, we had a good conversation with Dr. Graham. I'm sure CR absorbed a lot more of the details than I did so I'll let him post his version later. But, basically, Dr. Graham is willing to provide the stem cell collection and infusion (collection before Radiation Therapy and infusion after Chemotherapy treatments) portion of Abby's treatment. He is familiar with the St. Jude's study and believes we could accomplish the same thing locally.
At this point, Abby will have a catheter surgically inserted next Thursday or Friday at UMC in Tucson. They will begin the collection probably Monday, the 7th. They like to do 3 separate sessions with a day between each session. It sounds like each session is complete within an hour or two. The catheter can also be used for the Chemotherapy treatments.
She would then begin her Radiation Therapy at the end of the week at Good Samaritan Hospital. This would last about 6 weeks. Following the Radiation Therapy, she would receive 4, monthly Chemotherapy treatments I believe at Banner Desert Hospital. It sounds like our local oncologists would handle the specific protocol for the Chemotherapy. We are optimistic that they would be willing to consult with Dr. Packer in DC about what he has found out at his seminar.
So, praise God that things seem to be falling into place. Also, praise God that Dr. Shafron (our surgeon) is so concerned that Abby is taken care of. I really feel like he sincerely cares about her. We were having some trouble working with our neurologist getting orders for a blood draw to check her medication levels (we believe high levels of Dilantin to be the cause of her dizzy spells). He made a few phone calls yesterday and took care of something that we had been trying to do since we were in DC on Wednesday. Then, he called our house last night just to find out what transpired in our meeting with the oncologist. Finally, he called today to give us the results of the blood draw (which did indeed indicate that her Dilantin levels were too high), calculated her reduced dose and talked me through how to adjust her dose. He also offered to contact a very popular neurologist that we are interested in working with who also works at Phoenix Children's Hospital to get us an appointment. Why is this man who must have a million other things to do (I was told by his office staff that he was scheduled to be in surgery all afternoon today) willing to take the time to do all this for us? He is a very kind-hearted man, but I have to think that God has moved his heart in our favor as well.
Well, it's 3:06 and Elizabeth is still asleep. Another thing to praise God for! She took a really short nap this morning after waking up at 5:20 so by the time afternoon nap time came around she was one cranky baby! You can also pray that I will have wisdom about how to get us back into as much of a routine as is necessary and possible now that we have a plan. We all could use a little predictability :)
God's blessings to all of you prayer warriors! We love all of you!
Hopefully, a plan
Well, we'll know more details tomorrow, but we think we have the beginning of a treatment plan. God seems to be leading us to a doctor in Tucson who might be willing to do a part of Abby's treatment which will include harvesting stem cells. This will allow her to receive higher doses of chemo (after a 6 week round of radiation therapy). The stem cells would be given back to her to help her body recover more quickly from the chemo.
Please pray for our 1:00 pm phone conference with Dr. Michael Graham in Tucson tomorrow. Pray that he will be willing to work with us to receive most of the treatment here in Phoenix, that we will ask the questions that we need to ask and that he would be willing to converse with Dr. Packer (the Washington DC doctor who is willing to share the latest information he is receiving the next two days at a conference).
We'll update you more tomorrow.
Abby's Uncle Roy
More from the UK
I wanted to post this earlier but just didn't have time. This message is from the friend of Taryn's who ran in the Cancer run in the UK:
Right at this very moment I am extremely proud of myself, a rare occasion, but I have just completed my first Race for Life, in aid of Cancer Research. It was the most trying and deliberating physical event I have ever had to face and overcome.
It was in Leeds today at 11am, and the sun was high, bright and hot (a first for English Weather). There were over 3,500 participants, all women, racing in Aid of Cancer Research…all I can say is I was overcome by emotion, pride and love. At the beginning of the race as we (all 3,500) lined up, including some local celebs, we all stood strong and proud, families, spectators and event organisers stood cheering and we all just got caught up in a enthusiasm that came from deep within, each had a story, each had lost…it was like a united family…and for the first time in a long time I saw people I could relate to, and..well…I was very emotional as the horns blew…
I was stopped after the first km to interview for Calander news, after getting to know and interviewed prior to the race. After 2 km I felt like I couldn’t go on…I can’t describe the pain I felt in my heart, my chest and my shoulder, but it hurt...A LOT... The sun was relentless beating down upon us and I was starting to lose my drive, but something kept me going, something more profound than anything…My mum, and Abby… It sounds odd, but in my weakest moments, when I wanted to quit (I had a thousand reasons already in my head why it would be OK if I didn’t finish) but I repeated ‘mum’ and ‘Abby’ over and over again…I looked around and saw the inspiring image of hundreds of people running with such determination I knew I couldn’t quit, and I didn’t. I slowed down, however kept pace and determination right through to the finish line, where I was greeted by cheering crowds (felt quite special lol) and the TV crew again, who once again asked me how I was feeling. They had to stop filming at one point because I was so overwhelmed with pride and emotion, of knowing I had just completed such a difficult task for myself, for my mum, for Abby, and everyone else out there...I helped give hope…that helps me a great deal...
The crew were great, they took care of me, as I was racing alone, they were surprised but impressed, so I kinda got a big head...lol...
We went to Phoenix Children's Hospital early this morning for Abby's MRI which was done outpatient. She made it through without any trouble, and was even able to get her IV inserted after they had started the sedation, so she didn't need to worry about another needle stick.
After the MRI was done we proceeded to Dr. Shafron's office and met with him. They gave us the results of the MRI on disk instead of as films. He read them, and they reveal that there is a new "area in question" in a different spot in the right side of her brain. It is far enough away from the original tumor site that Shafron would not have seen it in the surgery. It was not on any of the pre or postoperative scans, which implies that it is new. It is not very big.
Along with this came the news that there is a possiblity that St. Jude's hospital in Tennessee might have a trial open that we could participate in. Shafron said the initial results from this trial are better than any he has seen, and our hemocs are also very interested in this. Abby would have to go to Tennessee to participate--she could not do it here. We're still not sure if she qualifies for this.
The question that remains there is whether or not she needs a second surgery, and if that affects her qualifications for the trial and the timing.
We meet with our hemocs late this afternoon. Please pray for this meeting. Thanks.
Sightseeing and Flight Home
Boy were we tired. Abby and Josiah slept almost 12 hours last night, we weren't out of bed until about 9:00 AM (DC time). Abby was quite perky this morning, so we decided to attempt sightseeing, even though we had some time constraints.
We caught the bus to the Metro, and got off at the Arlington National Cemetery stop, where we picked up a Tourmobile. This proved to be a nice way to get a good view of lots of places in DC there, though we didn't have time to ride the whole tour. Abby and Josiah got a big kick out of Mr. Lincoln's statue. I was once again struck by Lincoln's second Inaugural address, it is such a poigniant message. He clearly was a man of God, understanding that God's ways are not man's ways. We also got to walk through the Vietnam Veterans' Memorial. Boy was it crowded--I shudder to think of how busy it will be in the next few days.
We picked up the Tourmobile again and took it to just outside the White House Visitor's Center. It was hard not to go in, but our time was running short so we proceeded to the Federal Triangle Metro station and rode back to Georgetown.
When we got to the airport I called the doctor's office to confirm our appointments tomorrow. Abby has an MRI scheduled early (we have to be there at 6:30 AM), and then we will meet with Dr. Shafron again. Please pray that the MRI will clearly show if there is tumor that needs to be removed. Pray specifically also for the radiologist that will be reviewing the films. We are quite concerned that such a large component could have been missed the first time around--like I mentioned before, had we not gone to DC we would have never considered that there was any left.
If I haven't mentioned lately, thank you also so much for your prayers. They mean more to us than you can imagine.
Meeting with Dr. Packer
This was a day full of ups and downs, just like a rollercoaster, only this one we can't get off when we want to.
We caught a cab this morning to the hospital. After waiting in the lobby for a little while we were met by Heather (Dr. Packer's nurse practitioner) and Dr. Packer himself. Dr. Packer examined Abby, doing all the neural-type tests (hold your hands out, squeeze my finger, retrieve this toy, etc.) Abby did well for him.
Packer promised to have his pathologist and radiologist look at all our data. He does have a treatment protocol that he would recommend to us involving radiation and chemotherapy. He discussed Abby's condition with us at length, never making us feel rushed at all.
He also told us that the information we had been reading about ATRTs being very hard to treat probably referred mostly to tumors in very young children. ATRTs are a "new" tumor, meaning that they have only recently begun to separate them out and catalogue them separately from other PNETs. Since new data has been coming in, he said he is optimistic that treatment protocols similar to his can yield good results in kids Abby's age. Of course, with cancer, there are no absolutes or 100% certainty. God is good, though.
He expressed some concern over her postoperative MRI scans, and promised to have his radiologist look at them and he would get back to us later in the day. He also asked that we see if we could have a block of tissue sent to another specialist in Philadelphia to confirm the tumor's ATRT status, since the slides we brought with us did not have all the proper stains.
We started to leave the hospital when Abby began complaining of some dizziness, and then she tried to throw up. This, of course, is quite frightening to us now, since dizziness and nausea is one of the key indicators of a seizure. She didn't lose consciousness, though, but just wanted to sleep. Our nurse here at CNMC didn't seem concerned, especially when we explained how tired we all were, we had had the stomach flu, etc.
We decided to return to the hotel and let Abby nap for a while, then eat some lunch and try some sightseeing.
The first wrinkle there was that the shuttle to the Metro doesn't run during the day. Oops, I misread the sign. So we got to catch the bus, which worked fine, and the kids were all excited about that. We took the Metro from Tinley Park to the Metro Center station, and changed trains there to the Blue line to reach the Smithsonian Metro stop. Upon our exit, we discovered quite a todo on the Mall--the new World War II memorial is being dedicated on Memorial Day (boy have we been out of it), and the whole Mall area is in a tizzy. Barricades and portapotties everywhere!
A 15 or 20 minute walk later and we were at the National Air and Space Museum. Wow! We really wanted to do this for Josiah. He has been so patient and kind to Abby, and other than a few spats between the two of them it has been great to have him with us.
We enjoyed the museum greatly but unfortunately, Abby's dizzy spell seemed to come and go. She has complained of tiredness often. Amy and I carried her for much of the walk to NASM and also inside the museum some.
The worst part of the day, though, came when Dr. Packer called to wrap up his analysis of our data. He believes that we have not resected the entire tumor, and that there is still a significant amount left in Abby's brain. This was quite a shock to us, because Dr. Shafron was very happy with the surgery and was almost certain he got it all out. Packer recommends a second surgery before we begin treatment.
So instead of clarifying things, this trip has really muddied the waters. On the one hand, we have a good, tested (somewhat) protocol that we could use for treatment. The protocol is not without dangers, but it gives us a good chance. On the other hand, now we must consider a second surgery, and this one is almost certain to have some neurological aftereffects that will require therapy for Abby to overcome, if they even can be.
Our next step is to have another MRI done to see if what Packer and his radiologist sees on Abby's post-op MRI is more tumor. That MRI might not really tell us anything. I started to arrange appointments for an MRI and with Shafron for Thursday.
And Abby's dizzy spells? What about that? I called her neurologist tonight, and it might just be that her meds are out of whack. She seems to be recovering from each one well. They don't have the symptoms of a full seizure. So it seems best to just come home tomorrow and not to try to get her admitted to CNMC to be checked our more thoroughly.
So ends our day. It's hard to see God in what's going on. If we hadn't come, we would never have even considered a second surgery. But Paul says "keep the faith", and so we are trying. Please continue to pray for us about these things, and pray for a successful trip home tomorrow.
On a lighter note: Josiah's favorite part of the day? "The trains." Abby's favorite part of the day? "The butterfly." (see photo) What a reminder and a lesson for us. They live in the moment so much, appreciating exactly what they see and experience right now.
We made it safely to DC after a hair-raising experience at the airport--we arrived about 2 hours before our flight and stopped for breakfast after checkin. After finishing the meal we proceeded to security and discovered a line with probably 300 people in it. The line was not moving. Fortunately an astute TSA person waved us to the other concourse, saying there was no line at security there (not for long, of course a good 50-100 people sprinted down the concourse after he said this). We waited another 20 or so minutes with the concourse B line inching along and finally completed the security check with about 12 minutes to spare before our flight.
I'm really telling this story because it is an example of how God is faithful even in the small things. As we left the checkpoint, a skycap in an electric cart wheeled up and asked us if we needed a ride. He really came out of nowhere, or at least as far as I could see since I was panicked and certain that we could not make the flight. He bundled us on the cart and trucked us right to the gate, where the ticket agent waved us in. They were in the process of closing the aircraft doors. We were the last people to board the flight, with 5 minutes to spare.
We've had a nice evening here in DC, meeting Michael's dad and stepmom. They came to pick us up at the airport, took us to our hotel, then out to dinner, then back to their house to examine cicadas since the 17-year cicada cycle is going on right now. Boy did Josiah get a kick out of that! Abby didn't mind handling the molted shells, but drew the line at having these gentle insects crawl on her hand.
It's almost 10:00 PM, which should feel like 7:00 PM to us, but for some reason seems more like midnight.
We had calls from the hospital today confirming our appointment and moving it up a half-hour. We'll catch a cab to the hospital tomorrow morning.
Run in England
God is continually working
I just wanted to share a bit of good news I learned today. Some of you know that I have been taking classes from University of Phoenix Online so I can renew my certificate. I had until October 12 of this year to complete my last 6 hours of class (which I had planned to do this summer). I corresponded with someone from the Department of Education and found out that I can let my certificate lapse until October of 2005 and renew without having to meet the current certification requirements. So, God may allow me to keep my certification after all.
Also, I was reading in the Word the other day and these verses touched my heart. Maybe they'll encourage you all today.
Psalm 111 (NLT)
1 Praise the LORD! I will thank the LORD with all my heart as I meet with his godly people. 2 How amazing are the deeds of the LORD! All who delight in him should ponder them. 3 Everything he does reveals his glory and majesty. His righteousness never fails. 4 Who can forget the wonders he performs? How gracious and merciful is our LORD! 5 He gives food to those who trust him; he always remembers his covenant.
6 He has shown his great power to his people by giving them the lands of other nations. 7 All he does is just and good, and all his commandments are trustworthy. 8 They are forever true, to be obeyed faithfully and with integrity. 9 He has paid a full ransom for his people. He has guaranteed his covenant with them forever. What a holy, awe-inspiring name he has! 10 Reverence for the LORD is the foundation of true wisdom. The rewards of wisdom come to all who obey him. Praise his name forever!
Wow! EVERYTHING He does reveals His glory and majesty...His righteousness NEVER fails...He ALWAYS remembers His covenant...ALL He does is just and good, and ALL His commandments are trustworthy...
God is good. It looks like our flights are going to be covered by an organization called Mercy Medical. We are leaving at about 9:00 AM from Phoenix and getting in to DC about 3:45 PM on Monday, and departing DC at about 4:30 PM Wednesday, landing at about 6:45 PM.
These flights are perfect for us, allowing us plenty of time to see the doctor, and also take Josiah and Abby to see a couple of DC sights.
We will be staying at a hotel in Georgetown.
Off to DC [www.soc-neuro-onc.org]
God seems to be leading us in the direction of Washington DC. We received a call from Dr. Roger Packer's office. He is at the Children's National Hospital in Washington DC. I found some information about him online (see above link). He comes highly recommended from several sources.
Our appointment is at 8:30 on Tuesday morning. We will be seeing him in person (sometimes these guys have you see one of their research team members). He will examine Abby, then have his radiologist and oncologist look at her MRI's, CT scans and pathology slides. They will not have the ATRT diagnosis before they look at the evidence so it will be a true "blind" second opinion. Then, he will meet with us and tell us his diagnosis and treatment recommendations. I get the impression the meeting will not last long.
God has been so great with this part of our journey. First, when I spoke with Heather (Dr. Packer's Nurse Practitioner) she said the soonest we might get in to see him is June 1. After I expressed concern about waiting, she put me on hold for about 5 minutes. She came back on and said she cleared a spot for us on Tuesday before he leaves town on Wednesday. Second, our case manager with Cigna said that Dr. Packer is on their approved list so insurance will cover the appointment. Third, Children's National Hospital has a concierge service that helps arrange accomodations and transportation for out of town patients. Our social worker at Banner Desert Hospital here is also helping with that. We have been told that an organization called Mercy Medical will handle our transportation for free. They are also finding us accomodations within walking distance of the hospital.
We are so thankful for the way God has worked out this situation. Thank you for your prayers. You can pray specifically for a safe trip. We think we'll be leaving Monday and returning Wednesday. You can also pray that Abby will continue to recover quickly. She caught a cold so she's a little more worn out since she's fighting that off. We will be taking Josiah with us. Our Child Life Specialist at the hospital said that families dealing with cancer seem to do better when the well siblings are included in the care of the sick one. Pray that our time together will be a special time for the 4 of us. Pray for my parents and any other family and friends who will be caring for Daniel and Elizabeth while we are away. Pray that Daniel and Elizabeth will stay healthy...Elizabeth is VERY crabby today :)
On a lighter note...we haven't said much about Daniel through all of this. He is our 2 1/2 year old. You never know how much toddlers absorb what's going on around them, but he showed us this morning that he knows the importance of prayer. Josiah prayed at breakfast thanking God for the day and the food etc. When he was done, Daniel looked at Josiah with a very stern look and said, "Josiah, you forgot to pray for Abby!!!" Thanks to you all for being like the persistent widow asking God continually to heal our Abby. Here are some words from a dear friend of ours. May they be an encouragement to you all as you pray on our behalf.....
"On the spiritual battlefront, the scripture that keeps coming to mind is the parable of the persistent widow. She goes to the king over and over and over again until the king gives her what she asks. Jesus uses this to illustrate a point. God wants us to come to him persistently with our requests, not because somehow we change His will, but because He takes great pleasure when we seek him with great persistence, recognizing He is exceedingly generous to those who ask. I want you to know that Jennie and I take this attribute of God very seriously, and will be presenting our requests(and have already started) with a persistence that would make most people do anything just to keep us from coming back. Praise God He takes pleasure in this! Abby is going to be presented to the King with all she means to us and all that we know she means to Him, that we so much want her fully restored to health. Also that we fully believe if God is willing she will be made well. God already knows how much we want her here with us, but know for sure, He is going to hear it a lot more very soon. "
Some encouraging news
Rhabdoid Kids Site [www.geocities.com]
What a day. Praises and prayer requests abound.
First, the praises. We came home. What a great praise. Thank God we are home.
On the drive home from the hospital, I asked Abby what she missed most about being home. She said "I miss Josiah, Daniel, and Elizabeth." What joy that brought to my heart. Thank you God.
She also said she was glad she didn't have to pick her menus anymore. So I told her "no problem, we'll just tell you 'here's what's for dinner!'" :-)
Third praise: the bone scan is negative. That's a lesson for me from God I am sure. Scripture says not to borrow trouble, each day has enough trouble of its own. (Matt 6:34) This is a good memory verse for me.
Now the prayer requests: We met with Dr. Panchoosingh and Dr. Abella (I'm starting to think of them as A&P :-) ). The diagnosis came back as an Atypical Teratoid/Rhabdoid Tumor, or ATRT. This is an extremely rare type of tumor, highly aggressive, and resistant to treatment. There are survivors of this type of cancer. If it does not respond to treatment, however, Dr. Abella's words were "12 to 18 months is a good run."
So please, please keep praying. We already have so much to give God the glory for. What a wonderful testimony it would be to His power if He would heal Abby of this.
Still no results on Bone Scan or Pathology
Originally, the Banner Desert pathologists were not able to reach a consensus about the tumor. They thought it was probably a PNET, but decided that they needed to send it out. It went to Dr. Michael Hart at the University of Wisconsin. That was last Wednesday, I think. He has sent some results to the hemocs, but not a final diagnosis yet.
I know that Scripture says so many times to not be afraid, but I've been so scared today. Nobody seems to want to talk to us about the bone scan. They have kept saying "wait until we can all get together."
Pastor Mark came to chat pray with me today while Abby was taking her afternoon nap. It was good to pray with him.
One of Amy's friends who is a cancer survivor wrote to us the other day that what often appears to be a setback is just God rerouting your direction because He is working out His plans. That has definitely turned out to be the case with Abby's extended hospital stay. We've been able to get two things done here that would have required outpatient work otherwise--the balancing of her meds, and a bone scan.
We went for the bone scan today. It was the easiest of all the tests we have done so far. Abby was only scared for the injection of the radioactive dye that they use for the scan, and it didn't even hurt since she still had the IV access in her arm.
Hopefully we will have the results soon.
Abby had some of her friends come and play with her today at the "Froggy Playground" at Banner Desert. It was a much needed relief for her, and us too.
Well, we have what we think is a timeframe for Abby's stay in the hospital. We saw both her neurosurgeon (Dr. Shafron) and her neurologist (Dr. Hadden) today. Dr. Shafron still believes that the seizure Abby experienced yesterday was her brain reacting to the surgery. He says the CT scan they did late yesterday looks quite normal with some swelling and little bleeding. As far as he is concerned, Abby can go home anytime.
Dr. Hadden looked at the EEG (reads brain activity) and said it looked like a brain in a post surgery state. He wants to keep her in the hospital probably until next Wednesday. This will allow them to increase her dose of Keppra (the long-term anti-seizure medication) to what it needs to be and pull her off the Dilantin (the current anti-seizure medication). Keppra tends to cause drowsiness (which supposedly goes away eventually) so they can't increase the dosage too quickly.
Abby took the news pretty well. She wasn't as sad as she was last night. We can all pray that everything will get balanced out sooner than Wednesday and she will be surprised to go home early.
In the meantime, we'll be settling in for a few days. She is supposed to be moved to a regular pediatric room tomorrow if one is available. At that time she will be able to have visitors of all ages.
I am tentatively planning to check in at work on Monday for part of the day. You can pray that I will be able to stay focused and have wisdom about what to try to tackle. You can also pray that we'll be able to balance our family needs until Abby comes home. Finally, you can pray for clear guidance for Amy and I as we sift through all the information coming at us and make decisions about treatment.
I can't tell you all how God has ministered to our hearts through your words. Getting home at night and reading your verses and words of encouragement has been so refreshing to me. Thank you for taking the time to pray, asking others to pray, and sending us frequent emails. God has been hearing you all and we praise Him for all that He has done so far.
They have to keep her a little longer
Last I wrote, we thought Abby was going home on Friday or Saturday. On Thursday, while returning from one of several CAT scans, she had another seizure. This one was not as violent as the others, but still caused her to enter that unresponsive state, and finally just to go to sleep. They sent her for another CAT scan to make sure there was not bleeding at the removal site, that came back good. So currently the surgeeon, neurologist, and oncologist think this is just "normal" after surgery. Obviously the brain does not like being disturbed, and this is one of the ways that it responds.
The good part about this is that since it happened in the hospital, it gives us the opportunity to tune her anticonvulsant drugs under observation. The bad part is that means 3 to 5 more days in the hospital.
Followup MRI is done
Our hearts are a little lighter today, praise God. Abby had her follow up MRI today. It took 3 hours so they could reexamine the tumor location to be sure there is none left and also check her spine. The "unofficial" report from Dr. Shafron is that there is no tumor left-he got it all out and that her spine is clear. The official report should be ready tomorrow.
The oncologist spoke to us today briefly. He said they hope to have enough information tomorrow between 1 and 3, but it may also be the next day. He said additional treatment could range anywhere from nothing to a year of chemo and radiation. He couldn't narrow down the recommendation any more without the analysis from the lab. He did say that her treatment wouldn't require any additional time in the hospital beyond her recovery from the surgery.
Abby, our superkid, is bouncing back beautifully. She was prescribed up to 2 miligrams of morphine every 2 hours for pain. She has only had a total of 1.5 miligrams in all since the surgery. We even got to take her for a walk this evening. She walked herself for about 5 minutes and then rode in the wagon a while. I turned to CR and said, "Our daughter had brain surgery yesterday and we're taking her for a walk!!!" Praise God :)
She was a little disappointed to hear that the egg and hash brown breakfast she requested for this morning was going to have to wait till after the MRI (no food or drink because she was sedated). But, she gave us all a little smile. The anesthesiologist started giving her the sleepy medicine and slowly her little eyes drooped, but she kept popping them open again. He kept adding to the dose and finally he said, "I think she's out". They picked her up to take her to the MRI and she popped her eyes open again and said, "Can I eat now?" Ahh, God is good!
If things continue to go well, she'll be released to the regular floor tomorrow and then maybe one more day and she can go home.
Please continue to pray for recovery for Abby, decisions for us and also for strength. God has shown Himself so wonderfully to us this past week and we praise Him. Also, Abby is asking us all to pray for the babies in ICU-that they will get to go home soon. It is so neat to see that in the middle of all this, she is focused on others.
Surgery is done
First, let me say thank you so much for the prayers, offers of help, and good wishes. We have heard from so many people, it has been very comforting.
Abby came through the surgery extremely well. We even took her out for a walk yesterday afternoon. We are so amazed that less than 48 hours ago someone was inside her skull removing stuff that shouldn't be there. The surgeon also did an awesome job with her hair, shaving only a strip about 3/4 x 4 inches diagonally across the back of her head.
Her post surgical MRI is very good, unofficially (since the radiologist has not "signed off" on the review yet) showing no sign of further tumors either at the removal site or in her spine, which is where blue cell tumors also like to set up shop.
Our next step is with the hemotologist/oncologist, whom we hope to see today after he hears from the pathologist about the exact nature of the tumor. He did use the word "malignant" to describe the tumor. However, Dr. Shafron told us earlier that the brain is different than the other body organs--in other places in the body when you have a benign tumor removed you are done--it never comes back. Not true in the brain. There, doctors don't like benign tumors because they have much more trouble treating them. Conversely, they know how to treat malignant tumors. Further treatment will not be done during this hospital stay.
Abby could go home from the hospital tomorrow or Friday. All the drugs she is currently on (anti-seizure, steroid to control inflammation, and Tagamet to help with stomach irritation caused by the other two) can be taken orally. She had all her IV's except one removed this mornning and she is eating well. God has taken such good care of us.
They also just moved us out of Pediatric ICU to the regular pediatric unit.
I am so thankful to God. He has blessed us so much.
The Start of Abby's Journey
Abby is our beautiful 5 year old daughter, blonde hair, brown eyes, and cheerful spunky spirit.
We have been blessed with health for all 4 of our kids over the course of our almost 8 years of parenting. Except for minor respiratory issues for Daniel, our 2 year old, we had just dealt with the flu, childhood ear infections, and the inevitable winter cold season.
Thursday morning (5/6) Amy (my wife) went upstairs to find Abby in the kids' bathroom apparently "awake" but completely unresponsive. She would not answer questions or even turn her head to look at you when you were speaking to her. After calling a neighbor for help with the kids and calling me at work, 911 was called and the paramedics arrived. They told Amy that Abby's state was what you would expect to find after someone has had a seizure. Her blood sugar, however, was normal (low blood sugar is a common cause of seizures).
Abby's never had seizures of any kind.
The paramedics transported Abby to Banner Desert hospital (formerly Desert Samaritan), and I met them there. Abby was just beginning to come around, but really only recognized Amy. They drew blood for a full workup to see if she had an electrolyte imbalance, an infection, or something else.
Her coherence improved steadily in the next hour or so until she was talking and recognizing people fairly regularly. They sent us for a CAT scan. When the results came back the pediatric ER doctor took us aside and told us they had discovered a lesion in the right side of her brain. This, as you can imagine, was quite a shock to us, since neither Amy or I have any history of this kind of thing whatsoever anywhere in our families.
The ER doctor had already summoned a pediatric neurosurgeon, who had asked for the films immediately. They moved Abby to pediatric ICU (PICU). As we arrived in the unit, she had a second seizure (something I don't really ever want to experience again). They medicated her as soon as it was safe, and the seizure subsided. As part of diagnostics, they time seizures--hers lasted 11 minutes, which was quite long, they told me.
She recovered much quicker the second time (we never saw the first one), however.
Just two short hours later (at the time it seemed like forever) we met Dr. David Shafron, who is our pediatric neurosurgeon. He showed us the CAT scans and explained what we were dealing with. The lesion is about 2.5 cm in diameter, at the surface of the right rear quarter of her brain (the right parietal lobe). This is the area that handles motor control of the left side of the body in right-handed patients (we had noticed earlier that most of the second seizure happened on the left side of Abby's body).
Unfortunately CAT scans cannot tell what the area is, only that it is not normal. So at 4:00 PM that day we went for an MRI to get some more information. After those results came back, Dr. Shafron (after consulting with his partners and some other pathologists) was fairly certain it was a tumor, not an infection or a naturally occurring mass of blood vessels.
The only way to be sure what the growth is is to biopsy it. However, since (Shafron told us) there are almost no situations where you would leave the tumors in, especially in children, he recommended surgery to remove it. After they take it out they will be able to analyze it and recommend what our next course of action is (further treatment if cancerous or malignant, for example).
We've got a lot going for us. The area in question is near the surface and is not really very large. Patients often recover very well from having this area disturbed by surgery. Shafron tells us that the best indicator of how a patient does after surgery is how they are doing when they enter surgery, and Abby has been doing very well. In fact, you really can't tell she has anything wrong with her right now. Dr. Shafron is also quite well known as being very good at what he does. His practice specializes in this kind of thing.
Surgery is currently scheduled for noon tomorrow. It will last between 4 and 6 hours including all the preparation associated. Recovery time is surprisingly short--she could go home as soon as 48-72 hours after the surgery if she is walking and eating well, and if she requires no further treatment like radiation therapy.
Thanks for keeping us in your thoughts and prayers. I'll be in touch whenever possible tomorrow to keep everyone posted.