Update on Nick 7/27/12

Nick and I were in the clinic for another round of chemo and IVIG on Wednesday, July 25.

Overall, everything went well. The only major issue we had was when the nurses had a difficult time gaining access to Nick’s port (the permanent central IV line in his chest). The problem this time was actually getting the needle in the right place. This is not a problem that we usually deal with. It’s very rare actually. Anyway, after multiple attempts, Nick’s blood pressure dropped rapidly, he broke out in a sweat, and he turned gray. The nurses and I got Nick laid down before he actually went fully unconscious. Nick immediately came back around, so the nurses and doctor all felt like the episode was a fluke. Just something that happened from the stress on Nick’s body and him holding his breath too long. His blood pressure remained fine throughout the day and there were no more problems.

It scared me. The nurses were AWESOME!! Their calm approach kept me calm. I don’t scare easily, but when it’s something Nick hasn’t EVER done before...well...it scares me.

As far as I know, Nick’s lab work was good. I do know that there is still signs that the chemo is effecting Nick’s bladder. The levels are still within the parameters of allowing treatment though.

In three weeks, Nick is scheduled for CT scans. The scans will be looking to see what the cancer is doing, if it’s spread anywhere, and also to see if there is any activity with the FAP (the genetic condition that causes intestinal polyps to grow out of control).

Normally, Nick is really good with CT scans and drinking the contrast. With this set of scans needing to look at the lining of the intestines, Nick will have to drink a different contrast. This contrast is very thick and chalky. It is very difficult for Nick to drink it, especially because of the way the chemo has affected his sense of taste and texture. Nick ALWAYS gets sick when he has to drink this stuff. I have already asked that the doctor try to find another way of seeing what he needs to see without putting Nick through this.

Please pray that either an alternative can be found or that Nick will be able to endure it without getting sick. Also pray for compassion from the radiology technicians. They tend to think that every child acts this way just because they don’t want to drink the stuff. They don’t realize that Nick isn’t putting on an act. They always seem to forget that he’s the kid that will drink whatever they tell him to without complaint 99% of the time. If he says he’s getting sick from it, he really is. It’s not some excuse to try to get out of it.

Can you tell I’m stressed already?

The oncologist also wants Nick to have a PET scan to check the molecular activity of the cancer. The last time the oncologist wanted this test done the insurance wouldn’t pay for it. The doctor feels like Nick really needs to have the PET scan done. It’s been a year since the last one was done. Please pray for that situation.

The GI doctor is also being consulted about scheduling a scoping procedure to check the FAP as well. It’s been a year since they’ve looked. It’s time. Please pray they don’t find anything.

We are trying to get everything scheduled before school starts. The CT scans are scheduled for August 15. We don’t have any information on any of the other procedures yet. I’ll let you know when I do find out.

The oncologist also agrees with the kidney specialist’s thoughts about the episodes of Nick having the balance issues. Nick has been adding more fluids most mornings. So far, so good. No problems. Praise God!

I know this is getting long, but I have one more concern that I would like you to cover in prayer.

Nick is turning 18 in less than a month. That means transitions are going to need to begin happening. Nick will be able to remain a patient at Children’s until he’s 21, because he has been a patient there for so long. The problem comes with the complexity of Nick’s health. His oncologist is going to begin the process of finding an adult oncologist to treat Nick. It will likely take most of the next three years to fully make the transition from pediatric oncology to adult oncology. I don’t understand all of the aspects, but Nick’s doctor does. He told me that it’s something that is not easily done and takes a long time. To my understanding, it’s because Nick will be an adult with a pediatric cancer and there isn’t a lot of knowledge available in that area.

The only thing I know to do is pray. God knows what Nick needs. He will lead us there.

Thank you for continuing to lift us up in prayer. Thank you for the notes of encouragement and being there for us.

Trying to remain...

In HIS Grip,

Kristy Baxley

Update on Nick from July 12, 2012 **Out of order**

Hi All!

I’ve been waiting to hear the final results on Nick’s MRI, but since I haven’t heard anything I decided to go ahead and share what I know.

The preliminary results are that the MRI is negative. The only thing noted in the radiologist’s report is a cyst in the maxillary sinus.

I use the term “preliminary” because I haven’t actually spoken with Nick’s oncologist about the MRI results at this time. I have learned from past experience not to completely rely on the radiology report until Nick’s oncologist has reviewed the scans WITH the entire team.

Since I haven’t heard anything, I am taking the “no news is good news” approach. Thank you for the thoughts and prayers. This is a huge praise.

We still don’t have an answer to what could be causing Nick’s occasional balance issues. The next steps and tests are still to be decided. An EEG is not out of the question.

Nick had his lab work, chemo, and IVIG last week before the MRI. He did very well. He didn’t have any nausea issues this time. Another huge praise. The only real post treatment issue Nick had was fatigue. He tired easily and stayed more tired for about 4 days after his chemo. That seems to be the pattern of how things are going to be with the chemo now.

Nick will have a checkup with the kidney specialist this coming Tuesday, July 17. Yes, it’s another trip down to Birmingham. It’s just becoming too complicated to see more than one specialist in one day now.

Nick’s next chemo treatment is scheduled for Wednesday, July 25. Yes, that is the week after the trip to see the kidney doc. Ugh...I am so tired of these trips.

Approximately three weeks after the July 25 visit, Nick will likely be scheduled to have GI scopes (some combination of endoscopy, colonoscopy, pill camera) done to check the progress of the genetic disease that caused Keith’s cancer and death. Nick will also be scheduled to have CT scans to check the progress of the cancer and receive his chemo and IVIG around this same time. Yes, we will likely be spending at least one night in Birmingham. It’s going to take at least two days for all of this to be done. At this time, I don’t anticipate there to be a hospital stay, unless something happens during the scoping procedure. The kids and I will likely stay in a hotel near the hospital.

There are lots of prayer requests in this email. Please pray as God leads.

Please also continue to pray for the stuff from the wreck Kacie and I were in to get settled. It’s taking a long time to get the settlement worked out. I don’t want to involve an attorney, but I may have no choice in the matter.

Our physical injuries are getting better with every passing day. Kacie’s knee is getting stronger, but she still has some soreness to deal with. I guess the same can be said about my shoulder. 

Please pray for me. I’ve been looking for a job for a few months and haven’t found one. I REALLY need more income. I am also having to look at health insurance options for Nick. His insurance and social security benefits will cancel once he graduates in May 2013.

Thank you for the continued thoughts and prayers. It’s been a long, hard road and doesn’t seem to be getting any shorter or easier.

Trying to remain...

In HIS Grip,

Kristy Baxley

Update on Nick 7/17/12

Nick had a checkup this morning with the kidney specialist at Children’s Hospital. Nick’s kidney function looks to be settling down...finally. The kidney doctor gave us a lot of very good information today about why the kidney problems only seemed to show up recently, as well as a possible answer to Nick’s balance issues.

The kidney problems have been there since Nick had the chemotherapy for the liver cancer 16 1/2 years ago. We have suspected there were problems, but each time a problem cropped up, it would go away almost as quickly.

The doctor said today that the tests that were done six months ago and the lab work in between all indicate that the kidney problems are not a new issue. It’s actually a long term issue that is now to the point of needing treatment. The reason it’s just now showing up is because the kidneys have four basic levels of function. Once the injury to the kidneys takes place, the levels of function immediately begins to decrease. The more injuries that happen (from toxic medication in Nick’s case), the more layers of function that are affected. The human body has many ways that it makes up for the loss of function, until it gets to the point that medication is needed to supplement. That’s basically what happened back in the winter with Nick’s blood pressure issues. It was a symptom that the kidneys were no longer able to handle the toxins.

The DMSA scan Nick had in February was to see how much scarring there was in the kidneys. The doctor said today that it wasn’t a question of if there was scarring. It was how much scarring. Nick’s kidney’s are functioning at 60% on one side and 40% on the other. It’s not terrible by any means. One side obviously has more scarring than the other.

With that in mind, the goal now is to protect the kidney function Nick has left. The medication that the kidney doctor put Nick on several months ago to treat the blood pressure issue is actually being used to kind of pump up the kidneys and support their functions. The doctor told us today that Nick will not ever be able to come off of this type of medication. It has officially been added to Nick’s maintenance medications. This particular medication is most effective in protecting kidney function in diabetic patients. The success rate for someone with Nick’s particular health issues is not nearly as high, but as the doctor said, “We will take what we can get.”

I asked if any of the kidney issues or medication could cause balance problems. He said actually it all can. It’s a combination of the medication and dehydration. He advised Nick to add 12 ounces of fluid –preferably no calorie Gatorade- very first thing in the morning. It makes a lot of sense to me, especially since Nick can dehydrate very quickly and without any real warning. So, we are going to try this and see if it helps.

Today was very eye-opening for me. I knew Nick’s kidneys were fragile, but I didn’t realize exactly how fragile. If Nick ever has another massive infection like the one he had in 2005 that requires major IV antibiotics, he WILL go into kidney failure again. The doctor said today that is the only guarantee he will give me about Nick. This saddens me, but it also helps me to be a better advocate for Nick. I know that the kidney doctor needs to be on call when something has the potential to go haywire...along with the other that are already in that group.

The doctor also said today that he will continue to monitor Nick from a distance, meaning he’ll keep an eye on the different labs that are done and blood pressure that is recorded each time Nick is in clinic for chemo.

That is very reassuring.

I hope all of this is somewhat clear.

Overall, it was a very good checkup with what I consider good news. Huge praises for answered prayers!!

Thank you for covering us in prayer. It was very nice to go into Children’s, see the doctor, get good news, and leave all within a couple hours!

We go back to see the kidney doctor in 6 months.

We go in for chemo and IVIG next week.

Working to remain...

In HIS Grip,

Kristy Baxley

Tomorrow

Tomorrow is July 3. It is Kacie's half birthday. I have no idea why she keeps up with it, but she does. It could be because when she mentioned it three years ago, I came up with a spur of the moment family outing to celebrate her. We had just found out that her daddy wasn't much longer for this earth, and without a miracle from God, Kacie's daddy wouldn't be here for her 10th birthday.

We went bowling. Keith cheered us on from his seat, the oxygen tank his ever present companion. We also went to Sonic for treats. This small family outing would be our last one together before Keith's death a few days later.

So, I'm sad. I miss that sweet man. It is so hard to believe that in just a few days, it will be 3 years since Keith left this earth and his very sick body.

I'm finding that even though I am moving forward with the process of living, there will always be a part of me that remains with Keith. That is something that many who have traveled a similar path have tried to explain. I am now fully beginning to understand.


I can go out on a date or meet someone new, yet still grieve the death of my husband. 




sigh...