Robin Bock's Journal
New MRI results to come this week
Written Jun 30, 2013 8:58am
Next week is going to be a big week for Robin so please put Tuesday, July 2nd on your prayer list for us. Not only will Robin be resuming chemo after a LOVELY two week hiatus, but she is having an MRI done in the morning before chemo that is supposed to show if we're on the right path.
It's going to be a stressful day for many reasons. Robin will not be having her port accessed in the usual place, which is the hematology/oncology clinic, but right in the Radiology department before her MRI. They do this instead of using an IV to put in whatever stuff is needed during the MRI and this is a good thing as Robin really hates IVs. I have been assured that the nurses there are more than capable of doing this procedure well, but it will be a little nerve-wracking considering Robin's past experiences. I have to be sure to tell them she needs a one inch needle, remind them that they need take blood for the CBC and make sure that they know to leave her accessed so that she can go and get chemo after.
Robin is not going to be pleased to be wandering around afterward with her port accessed...but it is what it is. She already going to be a little bit of a wreck from all of this and then, if there is a wait in between the MRI and chemo, we'll just have to get a little lunch or something...oy. Then her shunt will need to be readjusted and that person won't be available until 12:30, so I'm hoping that the swelling at her right temple doesn't increase too much in the meantime. The shunt readjustment is just a matter of putting some kind of device on the place at the back of her head where the shunt was placed and turning a little dial. Last time it was practically painless, so I don't think Robin will too nervous about that. Then they will start the chemo, which will actually be a soothing experience at this point, knowing that everything else is behind her.
But we will still need to get the MRI results. I've tried to pin down the doctor as to when, but it all depends on what radiologist in on that day, etc. Dale was going to join us that afternoon for the results...but I really don't know if we'll be hearing anything at that time. Her chemo is only an hour once it gets going, so if all goes according to plan, we will be ready to leave by 2 p.m. and Robin will want to leave immediately. So I'm not sure that we will hear the results before we have to leave. I think what I might do is tell the doctor that if the MRI shows exactly what they were looking for and they have the results back before we leave, just tell Robin and I. BUT if the results are not what they were looking for then they should call Dale and talk to him so that he can hear that news and ask all the questions that I never think of asking. If the results are anything but what we're expecting, I would like to be able to talk to Robin privately anyway.
The MRI may be inconclusive at this point. I mean, it's a 15 month process and this is just the first three months. We've basically been told that they are just looking for no new growth. However, I am PRAYING for more, as you all know. So if you would just lift us up here, in ALL of these various areas, I would be so grateful.
Otherwise, Robin has been doing well. It's a quiet summer, for sure, but she has been very calm and peaceful for the most part. After a couple of attempts at Bible studies that didn't click, I found a teen edition of THE STORY at Treasured Times and she is loving it! It's really great because she's been wanting to read the real Bible instead of a children's version, but we just hadn't found the right one. This is really clicking with her and it's positive experience on more than one level because she's also been having trouble reading since the surgery. Not really sure what has been up with that, but she's had a hard time focusing on reading. But she started reading this one and it's going pretty smoothly...she's making good progress and, besides loving the material, of course, it's building her confidence about the fact that she WILL be able to read again with pleasure. :)
Oh, one more thing, on Monday, July 1st, we are also going back to the ophthalmologist for a field of vision test. The regular eye exam was very positive...20/20 in the unaffected eye and 20/30 in the eye with the tumor ..great news! However, they said that in most cases that means that the field of vision is going to be compromised. They haven't found any evidence of that in the little tests they can do with little flashlights, etc, but this test will involve a machine that will be more conclusive. I am praying that this test will also have the most positive result!
In looking for a scripture to help me deal with all of these prayers, I was led to 1 Corinthians 12:18...LITERALLY led...I asked for a scripture, opened a devotional and there it was..."God has placed the parts, each one of them, in the body just as He wanted." Praise HIM! His will be done.
So everything is going pretty well! Thank you, as always, for all of your love, prayers and support. We couldn't do this without you. We love you all!
"SpellingbeechampRobin" finishes 8th Grade
Written May 18, 2013 11:18am
Robin just completed her 6th chemo treatment yesterday. This week and last week, she only had one chemo drug vs. two and this is the one with more limited side effects, so she has felt better this past week and a half. What a blessing that this could hit on the final two weeks of school! She is looking forward to the launch tomorrow and we are still having her end-of-school-year party Friday afternoon, just as we did last year. We are very grateful.
Robin finished the school year with a bang, being one of 9 students in her grade to receive an award yesterday for maintaining a 4.0 all school year. She was the last student to receive the award, and her amazing, supportive school gave her a standing ovation. We love you, Marshall Schools!
We have adjusted to traveling to the cities every week and now have a routine down. Robin was saying to me in the car yesterday that she is feeling so much more at peace these days. One of the reasons is that the headaches that started around Christmas time and gradually became worse and worse are totally gone. The shunt is obviously doing its job getting rid of the fluid that was building up and causing her so much pain.
The swelling at her right temple has decreased significantly. The surgery sites have also continued to heal. The shunt area was particularly sensitive. This past week was the first time that Robin was able to wash her entire head without discomfort. Small gifts of healing and, once again, we are so grateful.
We have had many people comment on how well she looks and it IS hard to believe... being still less than 2 months out of brain surgery. Her energy level is still no where near what it once was and I honestly do not know how much that will improve until she is finally done with chemo. But we will see.
Her spirits are excellent. Robin has really felt the comfort and strength coming from God through the prayers of family and friends. Yesterday, while waiting for me outside the bathroom at the clinic, a nurse came to talk to a mom and daughter who were waiting in a room across the hall. First the nurse apologized for keeping them waiting, but then said, "I have excellent news. The MRI shows that the tumor is gone!" The mom proceeded to cry and hug her daughter. Robin really felt that she was witnessing this scene for a reason...to let her know that she and I and her dad will also have that same day in the future. Robin's tumor will never be gone, but it will shrink down to nothingness and will be dormant. That will be a great day.
Thank you so much...all of you for all your love and support. So many of you have stopped to talk to me and give encouragement and I know that you have done the same with Robin. We cannot express our gratitude deeply enough.
Chemo is Underway
Written Apr 10, 2013 4:46pm
This week saw Robin and her parents traveling to the cities again. Monday they met with Robin's medical team, and Tuesday surgery was done to install a portacath in Robin's chest for chemotherapy. She came through surgery very well, and had her first chemo treatment the same day. When I (her sister Katie) last heard from Robin, she was not having any bad side effects. We are glad to be one step closer to Well Again.
It is likely that Robin will have chemo for the next fifteen months. This will involve once-weekly trips to Minneapolis. Hopefully this week will be one of the last snowy drives for a bit! Mom & Robin have indeed made it home from the cities today, despite a bit of winter weather.
Robin also has a diagnosis now, as we've received biopsy results from St. Jude: Juvenile Pilocytic Astrocytoma. http://children.webmd.com/juvenile-pilocytic-astrocytomaThis is what doctors suspected after the first surgery, so it doesn't change our approach to healing.
Last but not least: the Marshall Independent published a very nice article on our robin bird this past weekend. See a link to it below!
Perhaps the next update here will be from the girl herself. Till then, please know that the whole Bock family is grateful for your concern & support.