Abby's Journey Archive

We got a call this morning from the oncologist's office. They had done a blood draw at yesterday's appointment and the lab work shows that the gram negative bacteria infection is back, this in spite of the Gentamycin and Cefepine we have been administering IV for the past week. They are insisting now that the catheter come out, so we are waiting for a call to determine when this surgery will be scheduled and where it should be done.

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.

We discovered this morning that the red line of Abby's catheter was once again refusing to draw back. We just had both lines injected on Friday with TPA to unblock them and when we left the office, they were both clear. Fortunately, we were already going to the oncologist's office this morning to draw blood for her weekly counts. They were able to clear the line again with the TPA, but Dr. Abella said we may have to consider removing this one and replacing it with a different type of catheter. Please pray that they will find a way to make this catheter function as it should so we can avoid the surgeries involved with replacing it.

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!

We tried for a somewhat normal weekend the past two days. We made it to church, and our wonderful Child Life specialist from the hospital, Debbie, came to talk to Abby's Sunday school classes about cancer. The kids were quite interested and Abby really surprised us by sitting right up front with Debbie, interjecting all sorts of interesting facts about what she had been going through. Amy and I were a little worried she was going to flip her dress up any minute and show everyone her catheter (and her cotton undies), but she provoked a giggle from us by demurely stating "I can't show you my catheter because I'm wearing a dress today."

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.

We have wanted for so long to send each and every one of you a note of thanks and appreciation for your prayers, notes, help, gifts and so much more. Not a day goes by that we aren’t thanking God for placing us in the thoughts and prayers of so many wonderful, giving family members, friends, friends of family members, friends of friends…the list goes on. The cards, letters and emails we have received have touched our hearts. Abby has a special hugs folder and book which was assembled by a friend of ours which contains all the cards and letters she has received. She enjoys looking through them and we are having a great time telling her who all of you are. We are so blessed to have had so many of you provide delicious meals, a well kept yard, a sparkling house, clean laundry, childcare and so much more that we could never remember it all. Abby has appreciated the generosity of every one of you. Your gifts have brought many smiles to her face (as well as to the faces of her brothers and sister). You all are a blessing and an encouragement to us and we appreciate each of you. Some day we pray we will have the opportunity to thank you all personally, but for now we thank you for accepting our thanks in a more general way.

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.

Abby was released at 3 pm today! Still no sign of bacteria in the red line. We are scheduled for a visit from a Home Health Care Nurse tonight to train us to administer Abby's IV antibiotics for the next 10 days. Our insurance continues to cover all these expenses, praise God.

Radiation treatment # 3 is done and things are still going smoothly there. Thanks for your prayers on our behalf.

Praise God the Blue line cleared up after one dose of TPA (medication to clear the line)!

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.

I spoke with C.R. this morning as they were heading off to radiation. He says they are now not able to draw back in the blue line (this means it will flush with saline, but they can't draw a blood sample from that line). This is different than what happened last week in her red line. So, please pray that it will clear up on its own.

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. :)

Abby got up bright and early this morning to be ready for transport to her first radiation treatment at Good Samaritan. We were a little late, but not too bad. The nurse and EMT in the ambulance were great with Abby.

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!

We got a visit from one of the pediatric infectious disease specialists today. He told us that from his standpoint there was really no reason why she could not start her radiation therapy, the hospital (we think) would just have to transport her to where we are having the therapy done at Good Samaritan.

This is good news, finally we will be able to start adjuvant therapy.

This morning the PICU intensivist came in to tell me that most of the blood work came back and revealed that she has a "gram negative rod" infection in her catheter. Now, I'm not a pathologist, so I'm not sure what all that means, but he did say that they were still waiting for a couple more cultures to come back so they could pin down where the infection came from (urinary tract, or the catheter itself).

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.

Abby was admitted to ICU at about 4:00 this afternoon after a CT scan and some bloodwork. Her white blood cell count was high indicating she was fighting off some sort of infection. Right after we got settled in our room, they sent her up for another CT scan, this time with contrast.

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!

Amy and I were fortunate to have her mom and dad and sister Taryn come yesterday to stay with the kids so we could get away for a night. Here in the Valley the local resorts run big specials in the summer because nobody wants to come *to* Phoenix when it's 110 out. So we went to the Buttes for the "Champagne and Roses" Romantic Getaway package. However, we weren't gone an hour when we got a call saying that Abby wasn't feeling well and had started to run a fever. I contacted Dr. Shafron a couple of times over the next two hours to get his read on what was going on, and he was quite patient and reassuring. Elizabeth had come down with tonsilitis last Wednesday, and she had run quite a high fever--I had to take her to the doctor. Our pediatrician informed me that it was most likely viral in nature, and high fevers were not uncommon. So initially we were not concerned, thinking that Abby was just suffering from tonsilitis.

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. :-)

Some of you must be praying extra hard because the oncologist's office could not find anything wrong with Abby's line this morning. It seems to be flushing and drawing fine now. God must have caused the clog to clear itself out, so hopefully it won't happen again. Please continue to pray that we will have no further problems with either of the catheter lines.

Just wanted to mention that we did finally get home last night. Dr. Shafron again was very gracious (I'll add pictures to this entry later) in getting us off. I got to take off my fiducial!!!

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.

I have been away from the computer for a few days so I''ll just back up and fill in some information and praises from surgery day till today.

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.

Abby had an OK night, she was awake about every two hours or so. She still had the Foley in, so she was not very mobile at all. The doctor didn't even want her to sit up. She was having some pain, so we got her some meds for that.

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.

I just left the hospital. We gave Abby the choice about who would stay with her, and she asked for mommy tonight, so I came home.

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.

Dr. Shafron just came out to give us the post-op report. He says the surgery went very well. There was definitely more tumor at the original site that needed to be resected, and the new nodule, in his estimation, probably had doubled in size since her MRI on May 27. So this is clearly a very aggressive little bugger. He also attempted a thorough search for infiltrated tumor, and removed some tissue based on what he found. The tumor was actually starting to come up through the dura, which is the lining in between the skull and brain.

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's intern just came out and said they are closing. She said things went well and they should be done momentarily. Abby is doing well.

Abby went into surgery about 3 hours ago. She made it through the MRI OK--she got claustrophobic after the first set of scans and had some trouble holding still. The tech stopped the scan twice to give her little breaks and adjust the restraint for her head, and in the end Dr. Shafron dropped into the MRI facility to get a first read on the scan. We were so relieved when they told us that he had what he needed. We were quite concerned that she had moved around too much.

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.

The mother of one of Abby's classmates at Eagleridge is a professional photographer. She offered to do a photo shoot of our whole family before Abby started all her adjuvant treatment. This is one of the photos that resulted. I'll post more as time goes on.

Our Child Life Specialist has arranged for one of us (she's trying for both of us) to accompany Abby into the MRI tomorrow. We can even have our hand on her foot/leg :) Thanks for praying!

We went early this morning to Tucson for our second stem cell collection. I didn't talk much about the first one, and didn't take any pictures (sorry). The "collector" is a large machine about the size of a washer that has a centrifuge in it. On the outside there is a large panel with several places to thread standard IV tubing. It kind of looks like a plumber's nightmare. One of Abby's lines becomes the "source" and the other one becomes the "return". They extract her blood very slowly, run it through all the tubing, centrifuge it and extract the stem cells from it. Then they also transfuse some "new" blood (from someone else) back to her. In adults they just give back saline, but kids can't handle losing that much blood at one time, so they transfuse back. She loses about 300 ml of blood. A standard blood donation (like at the Red Cross or UBS) is 500 ml.

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.

Abby just got back from her second and final collection. Ana said her counts today were great so they have more than enough for the infusion after her chemotherapy treatments.

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.

Thanks!

I just spoke with Ana at Dr. Graham's office. Abby's spine shows no signs of cancerous cells!!! God is great. Thanks for your prayers.

C.R. spoke to our contact at UMC and she said the first stem cell collection was a good one! They checked the numbers and say that Abby will only have to go one more time (on Wednesday morning) for collection.

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.

I had a chat with Dr. Shafron last night regarding a second surgery. He was so kind and patient with me as we went through all the risks and reasons why we would or would not do this. It seems like it boils down to the fact that you have to start adjuvant therapy sometime, and there is the possibility that if we do a second surgery, during Abby's recovery, she could develop more tumors that could require more surgery, and then you again have to decide when you are going to stop with the surgery and start with the radiation.

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. :-)

Abby's first two doses of the Nupogen went well today. The first dose was given through her new catheter in the PBMC at UMC. While we were waiting Dr. Graham checked for the preliminary report of the spinal tap. The results appear to be negative! The official report will arrive on Monday or Tuesday. The best part of that good news is that she will receive a lower dose of radiation to her spine than if her spine had shown signs of cancer cells.

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!

Late yesterday afternoon we drove the whole family to Tucson and invaded my in-laws. We were scheduled for 7:30 AM at University Medical Center. We arrived and got processed without incident.

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.

This morning we went in at 7:30 to Good Samaritan in Phoenix for the radiation therapy "fitting". They sedated Abby through the procedure. She had to have another "poke"--they inserted an IV just before the procedure, but she did great. We have been so proud of her each time she has needed an IV, she cries each time, but the most important thing is that she holds still.

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.

I had a request for an update on Abby's Uncle Roy. Roy was in surgery today to have an implantable defibrillator installed in his chest. He is out now and is doing well. He's been at the Heart Hospital in Tucson for many days now, and has made lots of progress there. We're not sure when he gets to go home yet. We'll write more later.

In case you haven't noticed, if you want to comment on any of the entries here, you can login to the site and click the "comment" link at the end of the appropriate entry. Comments are visible to everyone, including us.

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.

Today we met with Dr. Sapozink, our Radiation Oncologist. He interacted well with Abby and gave us the details on her Radiation Therapy (RT) which included the never-ending list of side effects. Her RT will likely begin on Monday, June 14 and will last about 6 1/2 weeks. She will receive whole cranial, spinal and focused area (where the tumor was as well as the surrounding area and the new 1 cm nodule that showed up on her MRI last Thursday) radiation. Tomorrow she will sleep through the set up appointment where they create her mask and "body bed" as well as take all the necessary measurements. Dr. Sapozink is also arranging a PET scan for sometime next week. He says the PET scan equipment is more sensitive than the MRI and will allow them to be more accurate with the focal radiation to the tumor locations.

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.