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.