There and Back Again

Before I get started, I just wanted to say I know it has been a while since I have updated the blog. We have had a busy last few weeks of summer and Zoë has had her ups and downs with her chemo. After the break from Carboplatin her nausea seemed to subside. She did not have Carboplatin for a total of 3 weeks. After the 3 week break, she was given a full treatment. She seemed to handle it pretty well. She was slightly sick the first couple of days as expected but had recovered by Monday. The following Friday she was again given a full dose of chemo. Again, she did pretty well handling the treatment. Nana and Papaw Tim came down to see us that weekend and we have a fantastic time with them. Zoë, Nana, and I had a great time having a “girl’s day out”. We had lunch at a swanky bistro and then headed to the mall for a little retail therapy. Zoë had been complaining that her hair was beginning to bother her. It had been falling out in small clumps and she was tired of the hair being on everything and everywhere she went. To my surprise, she asked me if she could get a haircut and have it all cut off. By this point, she already had a substantial bald spot on the left side of her head because she likes to twirl her hair. When she realized that she could twirl it, give a little tug and pull it out, she would show everyone. That Sunday, Nana and I took her to get her hair cut at JC Penneys. We had them cut it very short, like a pixie cut. WE DID NOT HAVE HER HEAD SHAVED!!! I will try to post a couple of pics so that everyone can see her with her new ‘do! Nana and Papaw left that evening and we settled down for the rest of the week. She had a good week. When we went to doctor day, her blood counts were very low. They decided to hold off on the Carboplatin as giving it to her would cause her counts to drop even further. She was limited the following week to the house. If she was to get sick or run a fever she would have been hospitalized for a minimum of two days. We made it through the week without any problems or hospital stays! On her doctor day two weeks ago, she had a physical therapy appointment before her chemo. She had a great time “playing” with the therapist and popping bubbles with her feet. We grabbed some lunch from the hospital cafeteria (which is actually good food) and headed to her chemo appointment. Her counts were back up so the decision was made to give her a full dose of chemo. As before, she had a great week. No nausea or vomiting throughout the week. Last Friday, she was very excited to go to doctor day. Gigi and Gabby were coming with us!!! We had a good time (well, as good as it gets when receiving chemotherapy). That weekend we had a blast. We took everyone to Shoal Creek just south of Joplin to float down the creek in our tubes. Zoë took a nap while the water was calm and had a blast going over the rougher areas toward the end of our trip. While she had a great weekend, Zoë’s condition declined throughout the week. We were back to the nausea and vomiting we had seen at the beginning of June. We have tried to make her as comfortable as possible with the medicines we have but her belly still seems to always hurt. Yesterday Zoë had an ophthalmology (eye) appointment as well as chemo. She did very well at the ophthalmology appointment. The doctor said her vision is 20/20 in her right eye and 20/30 in her left. He didn’t feel the need to correct her vision at this point as it is probably due to her tumor. Her left optic nerve is a little pale. I was informed this is more than likely due to her tumor and its location. We will keep an eye on it and go back in 3 months to see if there are any changes. After lunch, Zoë was tired and didn’t feel well. She has continued to lose weight, a concern for both me and her doctors. Zoë is obviously not handling the Carboplatin very well. She has a three week break from chemo and during this time we are hoping she can start feeling better. When we return, we will discuss other possible treatment plans. Her birthday is August 4th so we are hoping she is feeling much better by then. She will have home health come out this coming Thursday to draw labs so we don’t have to go back to Kansas City just for that. If her blood counts are good then she will not have to have labs taken again until we go back to the doctor on August 12th. I know everyone is wondering when she will have another MRI done to see if the chemo is working. I am happy to say she will have one done on August 10th at noon. We are looking forward to the next few weeks of not having to go to Kansas City and Zoë is looking forward to starting back to school soon.

Switching it up!

The past couple of weeks have been hard on Zoë. She has not been responding to the side effects of her chemotherapy as expected. With Zoë’s chemotherapy we expected some nausea and vomiting the first couple of days after she goes for her treatment. We did not, however, anticipate it continuing all week until the next scheduled treatment. The side effects from her chemo have been difficult to say the least. When she started her treatment she was given Zofran for nausea. This medication usually works great for chemo patients but not for Zoë. Her oncologist, Dr. August, thought switching her to a different anti-nausea regimen would help to curb her nausea and vomiting. We have been giving her three different medications with this new regimen with the hope she would feel better. Needless to say it has not helped. Zoë has lost a little over 5.5 lbs. Although it does not sound like much, it is over 10% of her total body weight. This week we changed up her medications for nausea and vomiting again and Dr. August thought it would be prudent to withhold Carboplatin (one of the two chemo drugs she is given at the hospital). She is scheduled to not have it the next two weeks anyway. Hopefully this break will allow her to feel better and recover some of her lost body weight. In three weeks we will re-introduce Carboplatin. The hope is for the side effects to be less severe when it is resumed. She seems to be feeling slightly better this weekend. We are hopeful her tumor is shrinking as she has made slight progress with the use of her right hand.

Treatment #2

Zoë had her second chemotherapy treatment on Friday, May 27th. While the appointment at the oncology clinic went great, this past weekend has been very hard on her. She has been nauseated and throwing up since Friday night. We have been trying to combat the nausea with Zofran but it has not been working. I called the oncology clinic yesterday to see if there was anything else I could do for her since she had not been able to keep anything down since Friday. I was instructed to alternate Benadryl and Zofran every 3 hours. I was really hoping this would help her but nearly every time she swallowed anything it would come right back up, including her medicine. Worried she may be getting dehydrated, I took her to the ER in Joplin (the one that wasn’t blown away by the tornado last Sunday). They admitted her very quickly since our doctor’s office had called ahead and told them we were on our way. I guess it’s kinda like call ahead seating at Texas Roadhouse. Anyway, it was comforting to know she would not have to be around anyone that was sick. Her blood counts are still good at this point but I didn’t want to take any chances. After we were admitted, we were placed in a room where we waited for the nurse to come in and access Zoë’s port. The ER did not have the right sized needle for the job. Lucky for us Children’s Mercy Hospital had given us a kit to take with us in case we had to go to the ER with all of the materials needed to access her port. Once they accessed her port they were able to take blood samples and start her on some fluids. The ER doctor said her throat was inflamed from her throwing up so much but other than that physically she looked well. All of her blood counts came back good and we were given a prescription for Phenergan and sent home. Once we got home she was feeling queasy again. While she was in the bathroom, I noticed a small lock of hair that had fallen out and was on lying on her shoulder. It is the time she has lost any of her hair. She has still been a little sick since we have been home but I am hoping for the best. She could use some peaceful rest.

The First Treatment!

Zoë has made it through her first chemo treatment!

After searching seven different pharmacies for Lidocaine cream and none of them having it in stock, we decided to go to the appointment about an hour early (it takes that long to take full effect) to see if we could get some from the hospital. After we applied it to the area around her port, we decided to get some lunch from the hospital cafeteria. Zoë had never been to the 50’s themed diner and was excited to see it for the first time.

Once we finished lunch we headed back up to the Hemotology/Oncology office. Her vitals were taken and we were escorted to an exam room. Lidicaine is a WONDERFUL thing. Zoë has never liked being poked and is always anxious when she knows it’s coming. The nurse told her she was going to count to three and then give her a little poke. Zoë was a squirming a little when the nurse said “three” and Zoë didn’t realize that the needle was in and she was done being poked. The nurse drew blood for labs (which took about an hour to come back). All of her blood counts were very good. We expect her counts to rapidly decline in the first 7-14 days and will go up and down throughout her chemo.

After some anti-nausea medication and Benadryl, Zoë received her first chemo medicine (Vincristine). Next up was Carboplatin. This medication is given over a period of about an hour. All in all, we were at the doctor’s office for about four hours. Zoe seemed to have fun while she was getting her medication. We played CandyLand, played on the iPad and watched Lilo and Stitch 2. She drifted off to sleep while watching Lilo and Stitch 2 just after it started. She was still sleeping when it was time to take the iv out of her port and although she was irritated that we had to wake her up she did very well when the nurse took it out. Once we got to the car and started on the way home Zoë said she was hungry. We stopped at Taco Bueno and got her a chicken quesadilla. I think it may soon become something we do every “Doctor Day” on the way home. We don’t have one in Joplin and it’s one of my favorite fast food places.

Zoë has had extremely mild nausea. Her anti-nausea medication (Zofran) is working well for her. I hope her nausea continues to be kept at bay and she can enjoy the weekends. She is also taking an antibiotic during the weeks to prevent a certain type of pneumonia. Most of her medications are on an as needed basis so she won’t be taking them every day. Zoë has been looking forward to “Doctor Day” every week and I hope her excitement for Fridays to come will continue.

Bandage off

Well, Kasi just took the bandage off of Zoë and gave her, her first bath in three days.  I walked in and asked Zoë if taking the bandage off hurt.  She said, with a smile, that it did not.  Kasi thinks that she may have scars, but right now I don’t think Zoë knows or cares.  Zoës strength, up to now, is the one thing has kept me from completely freaking out.  Every time she goes to the hospital or has tests done; she only seems to care about the “fun” part or “friends” she met.  Even after dealing with “pokes” and medicine, she will just smile and tell you how much she loves you or missed you.  With the hard part coming up, I can only hope she continues to be strong. 

Port Placement

Zoë is at home and doing well after her port placement today. Her port will greatly reduce the amount of “pokies” she has to endure. She will still have to be “poked” when accessing her port but the nurses will not have to worry about finding a good vein to draw blood or insert an IV. We will also be given a numbing cream to apply to the area around her port so that the “pokie” will not hurt her as bad.

Zoë has two small incisions where they have placed her port. One is about an inch long and the other is very small. Both have dissolvable sutures and medical glue to help the wounds heal with the least amount of scarring. She has a dressing covering both that will be left on for three days. She may be sore at the point of the port insertion but that discomfort should only last for a maximum of two to three weeks. She has not complained of anything hurting as of yet.

Zoë was very apprehensive about her procedure today but we were able to make it through. She was given Versed to calm her before they even attempted the IV (thank you Memaw for the suggestion). Although it only seemed to help calm her fears slightly, I was relieved when she told me later that she did not even remember getting that “pokie” from the nurse with the blue hair. Everything with the surgery went splendid. The port was tested while she was asleep and worked as it should. As soon as they were finished, we were called back to be with her in the recovery room when she woke up from the anesthesia. Her throat was a little sore after having the breathing tube during surgery but she was able to take a few small sips of apple juice. Once the nurse made sure she was able to keep the juice down we were allowed to be discharged and head home. She slept most of the way home but as soon as she woke up she was hungry. She, of course, was asking if we could go to McDonalds.

The Plan

Zoë had three appointments on Thursday. The first appointment was for a second, more in depth, occupational therapy evaluation. We were given several exercises we can do at home so we will not have to drive to Kansas City as much. She likes these appointments and has fun going to them, so we are going to try to work a few of them in when she goes for treatment. The second appointment was for a physical therapy evaluation. She has a few issues with the strength in her right ankle but nothing to be overly concerned about. We were given a band we can use to help strengthen her ankle at home. Physical therapy is not really needed at this time. She would get a small benefit from it, but with everything else going on we have decided to concentrate on her treatment for her tumor and occupational therapy.
Zoë’s third appointment was with her oncologist, Dr. August. I did not realize she had never met him until we were on the way to his office. She was hoping for a girl doctor and was slightly disappointed that her doctor was a boy. She had a great time at her appointment and even got to pick a prize from the prize closet (she picked suncatchers).
Dr. August has obtained several second opinions on Zoë’s diagnosis. He sent her scans to other pediatric oncologists and to a team at St. Judes Childrens Hospital. They have all agreed with his preliminary diagnosis of a low grade optic pathway glioma. Because everyone agrees on the diagnosis, we are not going to do a biopsy. It is too risky and will probably only tell the doctors what they already know. She will also not be having surgery to remove her tumor. We feel the risks are too great at her age for surgery. She will also not be doing radiation. Again we feel that the risks are just too great at her age. We have decided on chemotherapy as the treatment option we are going with for Zoë. She will be going through chemotherapy for approximately one year. This coming Friday she will have a semi-permanent IV, called a port, placed in her chest. Each time she has chemotherapy or needs blood drawn it will be done by accessing her port. This will greatly reduce the number of times she will have to be “poked”. She will begin weekly treatments the following Friday (May 20th). Her chemotherapy will consist of mainly two medications, Vincristine and Carboplatin, given through an IV. Vincristin works by interrupting cell division. Carboplatin works by attacking rapidly dividing cells. She will begin weekly treatments until the end of July. She will continue to have treatment after the end of July but will have a few weeks off here and there. When she does not go to the clinic, she will have a home health nurse come and draw labs for Dr. August. It will be crucial to know her blood counts every week even though she may not be going to the clinic.
Zoë will still be able to begin Kindergarten in the fall. She is excited about going to the “bulldog school” (as she calls it). She is such a charismatic little girl we know she will have no problem making new friends.
For those of you that would like more information, please go to www.curesearch.org

Rescheduling

Just a small update on Zoë'. Her oncologist, Dr. August, called today to let me know that he is sending her scans to St. Judes so that their specialists can look at them. If she has to have a biopsy or any other surgery that is probably where they will send her. Her oncology appointment has been rescheduled for May 5th. She also has two other appointments that day. One is an occupational therapy evaluation (a continuation of her appointment from last Monday) and one for a physical therapy evaluation.

Upon our discharge from the hospital Thursday night, we were given a short summary of events and what was found. I have copied this summary and posted it below. Zoë was admitted from the Children’s Mercy Hospital Neurology Clinic for right sided weakness. An MRI of her brain was obtained which showed a brain tumor originating from her optic nerve. We consulted several of our subspecialists, including Neurosurgery, Hematology/Oncology, Endocrinology, and Ophthalmology. Neurosurgery felt that no surgical intervention was warranted at this time. Endocrinology asked for several labs to evaluate for hormonal abnormalities that can be seen with this type of tumor. This workup was negative. Ophthalmology performed a dilated eye exam and found no abnormalities. We tested for neurofibromatosis which is a genetic condition that can have optic glioma as a finding. These results will not return for about 6-8 weeks. An MRI of her spine was obtained and was normal. Zoe did not have any neurologic problems during her admission, and had no signs of increased pressure in her skull. She did not require any medications. Zoë will have several follow up appointments in the near future. She will see her oncologist, Dr. August, on Friday. After our consultation with him, we will have a more definite answer on when she will be fitted with a semi permanent iv and when she will begin chemotherapy.

Thank you Ore City Elementary for all of the gifts and Get Well cards!!!

Homeward Bound?

At the moment, it looks like we may be able to go home late tonight.  This would make Zoë really happy.  She has been asking when she could go home all day.  We sat down with the Oncologist and discussed the possible treatments for Zoë.  A piece of good news is that Zoë may not have to have a biopsy done.  The doctors believe that this still could be a low grade optic pathway glioma.  They are sending out Zoë’s scans to get opinions from different doctors across the country.  At Zoë’s age, the treatments for this type of brain tumor are limited.  Complete removal of the tumor is not really even an option.  Trying to remove the tumor, due to its location, would most likely cause blindness and could even make things worse.  Radiation would be a better choice for Zoë, if she was not so young.  The collateral damage caused by the radiation, could cause other long term issues for her.  The doctors believe that chemotherapy would be the most effective treatment with the least amount of permanent damage.  If Zoë starts chemotherapy, it will be a process that lasts approximately a year.  They will also need to put in a more permanent IV in her chest for the duration of the chemotherapy.   After she has completed chemotherapy, they will then do another MRI to see if the size of the glioma has changed.  Low grade gliomas usually respond to chemotherapy about 60% of the time.   If her glioma does not respond then they will look more closely at the option of radiation and possible surgery to remove part of it.    

Zoë’s tumor is not likely to ever “go away” completely.   The doctors are hoping to stop the growth and reduce the size.  She has been told she has something in her brain that is not supposed to be there and we are going to do all we can to fix it.  .  She is not prohibited from doing anything.  She can still do everything she has always done.  Zoë is still that same spunky little five year old we all have fallen in love with.  She has not changed in the slightest. 

Day Three

Today has started out a little ruff for Zoë.  Before she was able to eat breakfast, she had to have more blood drawn.  They had to use a vein in her foot because her arms were too bruised from lab work over the past couple of days.  All of her lab work has come back normal except for her cortisol level.  The reason they think it may have come back abnormal was due to the time it was taken.  This was the reason for the “early stick” this morning.  The MRI on her spine has been moved from this morning to 3:00 this afternoon.  She had a consultation with several ophthalmologists yesterday afternoon.  They dilated her eyes, checked her vision and optic pathways, growth, etc. and said her vision has not be affected by the tumor.   Her doctors were worried about her vision and hormone levels because of the location of the tumor but everything is coming back normal.   We still do not have an exact time on when they are going to do the biopsy of the tumor but we know it will probably be within the next two weeks.  On the bright side of things, Zoë has become a favorite among the doctors and nurses attending her.  She has visited the playroom on her floor, made a crown with rhinestones and feathers at arts and crafts, and even made a volcano explode at the science corner.  We have played several games of Candy Land with the nurses and always seems to win by a landslide.  She is picking up on many of things the doctors and nurses do, making them do it for her when she is finished doing it for them.  A couple of these things include keeping your head still while following her finger, and squeezing her finger with each hand.  She also likes listening to her heart beat (and everyone else’s) through the stethoscope.  Zoë is getting restless and wants to go to the playroom so I’ll stop here for now.  She would like everyone to know she misses them and thinks the hospital is GREAT!

MRI in the morning

Zoë will have another MRI in the morning, this time on her spine.  They are just going to make sure that the rest of her nervous system is ok.  We are not sure what time she will go in for the MRI, but we know she will be groggy for a while after it is over.  She will also have more blood drawn in the morning so the endocrinologist will have a better sample.  These two things are Zoës least favorite, due to all the “straws” (needles) they put in her arm.  Hopefully, this part of the day will pass without too much trouble for Zoë so she can relax as much as possible before the next big step.

What we know.

As most family members may know, Zoë’s right hand has been getting weaker over the past year.  At first we thought this may be due to her being extremely left handed (as Zoë seems to take everything to a level of her own.)  Recently though, we have found out that this problem was due to a large mass growing in her brain.  The doctors gave her an early diagnosis of “Optic Nerve Glioma.”  We have recently found out that the first diagnosis could possibly be incorrect.  As far as we know, there is not any family history to suggest Optic Nerve Glioma, and Zoë is not showing the common signs that would help support the first diagnosis.  What we are left with is  some other form of tumor that may need to be treated differently.  A standard Optic Nerve Glioma would be treated with radiation and chemotherapy, as trying to remove the tumor could cause permanent loss of sight in the affected eye.  Due to the uncertainty, Zoë will have to undergo surgery to have a biopsy done on the tumor.  With this information the doctors will get a better idea of what they are dealing with and how to further Zoë’s treatment. 

Currently, Zoë is feeling fine and entertaining the hospital staff in her special Zoë way.  Kasi and I will try to keep this blog updated with any new information about Zoë.  We appreciate all the prayers and kind wishes.