First the good news – Rachel got a visit from a furry friend today at the hospital.

The bad news – Rachel’s had a pretty miserable couple of days. She had the halo traction device put in place yesterday in the OR (under sedation to make her sleep, not general anesthesia.) Her head has been a lot of pain since then. She was already not tolerating the pain well this morning, even with pain meds, and then they tightened the screws and added more weight to the traction, making it unbearable. She hasn’t been able to eat much of anything because her head hurts too much when she eats. The pain meds and lack of food has also made her nauseous and she’s thrown up twice. They put her on IV fluids tonight so she doesn’t get dehydrated. They also tried a different anti-nausea med that also helps headaches and both her head and her nausea are a little better after that.

For those who don’t know what halo traction is (which is probably most of you, since they rarely use it anymore), it involves inserting 4 pins/screws directly into the bones in your skull. The pins are in a round device that goes around your head like a halo, which is then attached to a rope and pulley system that’s weighted down with weights. They started with 10 pounds of weight and then added 4 more pounds this morning. Mind you, she only weighs about 90 pounds. This traction is to attempt to get the T3 vertebra that’s pushed out of alignment back into place prior to Thursday’s surgery. Here are some pictures of the halo device and the rope and weights:

Rachel’s surgeon stopped by this afternoon. She will be first on the schedule on Thursday, though the ORs start a little later on Thursdays; it’ll probably be around 10am. The surgery should take around 4 hours, depending on how much the traction has helped beforehand, so this will be about half as long as her last surgery in September. They will use the halo traction during surgery to finish aligning her spine prior to replacing the supporting hardware and then the halo will be removed (or 98% sure it’ll be removed, the surgeon said and that he can’t envision a scenario where it won’t be removed.) The same plastic surgeon as last time will be in the OR to do the close as well.

They aren’t supposed to be tightening the screws or adding any more weight tomorrow and the surgeon’s fellow said that the pain should calm down a bit after she gets used to the added weight, so hopefully tomorrow will be slightly better.

 

We heard from Rachel’s surgeon’s office this morning. They are admitting her to Mass General on June 4 to put her in the halo traction prior to surgery, which is scheduled for June 7.

We have secured housing across the street from the hospital again, so at least we don’t have to worry about that while worrying about everything else.

Rachel had an appointment with her surgeon in Boston on Friday morning and she needs surgery as soon as possible. The supporting screws are loosening and the ones at the top of her resection area have pulled completely out of the bone and her spine is out of alignment (sublaxation) and there is narrowing of the space between the vertebrae (stenosis.) This puts her spinal cord at risk of injury.

This is not her actual scan but it is pretty similar to what we saw on hers, though hers is a few vertebra below the one in the scan. Notice the C4 vertebra is not aligned with C5 in the photo on the left:

This certainly explains why her pain keeps getting worse; this has probably been gradually happening since late November when her recovery from surgery started feeling worse instead of better.

The doctor sent her for a standing X-Ray and put in orders for a spine CT that she can have done here in Maine and sent her home with a cervical-thoracic brace to try to protect her spinal cord from injury. The brace looks like this one (not Rachel in the photos):

As you might imagine, this is very uncomfortable to wear and makes eating and drinking very difficult.

Since her spine is out of alignment, her surgery will be complex, since it involves moving it back into alignment, which also means moving the spinal cord back into alignment. They will be replacing the carbon fiber rods and screws (we weren’t even aware there were any rods – they only told us there were 4 screws) with titanium and ones that are supposed to fit into the bone better. Unfortunately, this also means future imaging scans will be harder to read, which is why they went with the carbon fiber hardware to begin with. Her recovery time will be about the same as her surgery back in September, or maybe a little longer. The surgeon said they would be putting her head/neck in traction during surgery to try to gently pull it back into alignment and that they might want to admit her to the hospital a few days before surgery and put her in traction beforehand, while she’s awake and able to inform them if she’s having problems with numbness or other symptoms. If her spine can be better aligned before surgery, it will make the surgery safer and less complex and probably make the recovery easier. However, it’ll be a really uncomfortable few days for Rachel, as it would involve being immobilized with 4 pins that will be directly inserted into the bones of her head (2 near her temples and 2 in the back) and attached to wires and a device that will slowly and gently try to pull her neck back into alignment.

They currently have her surgery scheduled for June 7 and we are waiting for the surgeon to confer with his colleagues as to whether or not to use the traction before surgery. If they do, she’ll probably be admitted to the hospital to start that around June 3 or 4.

Caitlyn’s high school graduation is June 10, so Rachel will miss that. I’ll leave Rachel and head home to see Caitlyn graduate and then rush back to Boston.

Rachel’s Make A Wish trip to Scotland was supposed to be June 25, so we have to reschedule that. The surgeon recommended no earlier than early August and suggested waiting until next year would be better (since she’s goes off to college at the end of August.)

As you can imagine, this is pretty discouraging for all of us and just serves to emphasize that a battle against cancer never ends.

Rachel had another set of 3-month follow-up scans this past week (chest CT and spinal MRI.) Those were both clear – no evidence of disease. ❤

The MRI showed that the supporting hardware (carbon fiber screws) in her spine is loosening and shifting and her spine is curving. Her oncologist here is sending copies of the scans and also pictures of her back to her surgeon down in Boston. We are sure she’s going to need another surgery to correct the problem; her back pain is getting worse and one of the screws looks like it’s about ready to come through her skin. We just want to make sure she can have the surgery and recover in time for college this fall, since she’s already had to defer a year for treatments. Stay tuned for more updates.

Also – Scotland flights are booked!

The passports have been applied for – so exciting!

Rachel was surprised by a visit from her wish granters from Make A Wish tonight. They arrived bearing balloons, a gift bag of Scottish treats, and Rachel’s official wish proclamation that her wish to go to Scotland has been approved. ❤

Our next step is to apply for passports for Rachel, Alyssa, and Caitlyn, and then the Make A Wish people can start booking our travel. We are aiming for the trip to be around the end of June.

Rachel had her first 3-month follow-up MRI along with an EKG and echocardiogram last Tuesday, February 6. She had an appointment with her oncologist today to get the results. Everything looked good, still no evidence of disease (NED), fluid build-up is stable (hasn’t shrunk, but hasn’t grown either), heart looks good. ❤

Rachel’s back has been feeling a bit better this week. We discussed an action plan to get her more active to get her back stronger (she prefers to try on her own first and do physical therapy only if necessary.)

The oncologist is going to consult with the doctors in Boston to see if they want any other scans or anything. If not, the next tests will be another hearing test check as soon as I can get it scheduled and then the next 3-month MRIs of her spine and CTs of her chest will be in May and August (right before going off to Simmons College this fall!)

Since it is well past time that I posted some updates, I figured I should take advantage of this long weekend and get to it.

Rachel had the surgery to remove her port on November 29, as scheduled. Everything went smoothly; she was only in the operating room for about 45 minutes. In the pre-op area one of the nurses gave her a stuffed bear, complete with a surgical cap. In post-op, another nurse brought her a “Freedom Cake” to celebrate having her port removed. ❤

About a week before Thanksgiving, Rachel started having more pain in her back again (it never completely went away after surgery, but started to get worse.) On December 3 she noticed a fairly large squishy lump on her back, at the bottom of her scar. She saw her oncologist here in Portland on December 5, who indicated that it felt like fluid, which is what we had thought, and that it was probably related to the same fluid buildup that showed on her last scans. He suggested an X-Ray of her spine and an ultrasound of the area and said that he would inform her doctors in Boston. We heard from her surgeon’s office (in Boston) the next day, saying that he wanted to see her in Boston and have an MRI down there, which was scheduled for December 14. A few days later we got a call from her radiation oncologist, who wanted to rule out the fluid being in her lungs, so she ordered a chest X-Ray for when we went to Boston.

The chest X-Ray was clear and the MRI showed the same fluid build-up from right after surgery. Both the surgeon and the oncologist thought that the fluid amount appeared to have increased. The surgeon said that it was likely that she was leaking spinal fluid, but since her symptoms (occasional headaches and the back) didn’t indicate an emergency situation and wanted to take a wait-and-see approach. It was possible to do another surgery to repair the tear in the dura around the spinal cord, but that in itself would come with the risk of another tear. Plus it would again require a plastic surgeon to make sure the area was covered well, just like the last surgery. He said that the fluid would likely continue to leak until it filled the space and then it would be stable. Draining the fluid would only serve to clear out the space so that it would leak more, causing more headaches and other symptoms. He wasn’t sure what exactly was causing the increased pain, since it seemed to be below the area where they removed portions of her spine and all. The official MRI results were ready the next day (after we went home) and the radiologist seemed to think the fluid was only slightly increased (the report said “no interval increase” or something like that.) There was no evidence of disease (NED)/no cancer recurrence on the MRI.

On December 28 Rachel had a routine “post-treatment” CT scan of her chest, ordered by her oncologist here in Portland. Scan was clear – no cancer evident.

Rachel reports that for the past week her back has seemed to feel slightly better, so hopefully she is finally on the mend.

And now for fun stuff: since my last blog post, we have celebrated Christmas, Rachel’s 19th birthday (not in the hospital this year!) and New Year’s, and visited Garden’s Aglow at the Coastal Maine Botanical Gardens.

In honor of #GivingTuesday, I wanted to highlight a few worthy causes that have helped Rachel during her treatments.

1. Donate blood or platelets. This is so important for cancer patients; I had no idea how much chemo affects a person’s blood counts. I lost count of how many blood and platelet transfusions Rachel had along the way. Visit http://www.redcrossblood.org/ to make an appointment or find a blood drive near you.
2. Make-A-Wish: Every 38 minutes Make-A-Wish® grants the wish of a child diagnosed with a life-threatening medical condition in the United States and its territories and every five days, it is the wish of a Maine child. Rachel is currently awaiting the final approval for a trip to Scotland for her wish. Visit http://maine.wish.org/ for the Maine chapter or http://wish.org/ for those of you outside the state of Maine.
3. Maine Children’s Cancer Program: This is the home of Rachel’s wonderful team of doctors, nurses, and social workers here in the Portland area. https://fundraising.mmc.org/mccp_home
4. Barbara Bush Children’s Hospital at Maine Medical Center: The nurses and child life specialists really know how to make an awful hospital stay bearable. Rachel hasn’t had to have a hospital stay here since her last chemo treatment in early August and we all miss the staff there. https://mainehealth.org/barbara-bush-childrens-hospital/fundraising-donations/ways-to-give
5. Grahamtastic: Providing free laptops, tablets, robots and internet access to seriously ill children, allowing them to continue their education uninterrupted despite their medical condition or financial limitation. Rachel received a laptop from this great organization, allowing her to more easily complete her schoolwork as well as stay connected to friends and be distracted by video games during her hospital stays. Leslie Morissette founded Grahamtastic Connection in honor of her son Graham who sadly lost his battle to cancer in 1997 at age 8. While spending many hours with Graham at the hospital, Leslie became keenly aware of a great need for children and families to access the internet. It was this need that inspired her to create Grahamtastic Connection. In 1998 Grahamtastic supported 10 children in Maine. The program has grown to provide computers to more than 150 recipients a year. http://www.grahamtastic.org/home.html
6. Next Step: Providing retreats, workshops, campferences, and other year-long programs for young adults ages 16-24 with cancer, HIV/AIDS, and other serious illnesses in the Boston area. Rachel had a great time attending one of their campferences for cancer patients this past summer and visited their office in Cambridge when we were there in October for her final radiation treatments. There are so few resources for this age group; Next Step serves a great need. http://www.nextstepnet.org/
7. Christopher’s Haven: Providing temporary, low-cost, apartment-style housing for pediatric cancer patients and their families while receiving treatments away from their homes at Boston hospitals. Conveniently located right across the street from Mass General, Christopher’s Haven was our home away from home during Rachel’s first radiation treatments and following her surgery in September. http://christophershaven.org/
8. Family Reach: Dedicated to alleviating the financial burden of cancer. Working with more than 200 hospitals and cancer centers nationwide, Family Reach provides immediate financial assistance, education and navigation to families before they hit critical breaking points. Family Reach made it possible for us to stay at Christopher’s Haven during Rachel’s treatments. http://familyreach.org/
9. Ronald McDonald House at Boston Harbor: Providing free apartment-style temporary housing for pediatric patients and their families during their treatments at Boston-area hospitals. Located in the beautiful Charlestown Navy Yard and close to one of the hospital (free) shuttle stops. We stayed here during the last of Rachel’s radiation treatments. https://www.rmhbostonharbor.org/
10. Love Your Melon: We learned about this organization during one of Rachel’s stays at Barbara Bush Children’s Hospital, when she received one of their hats. Love Your Melon is an apparel brand dedicated to giving a hat to every child battling cancer in America as well as supporting nonprofit organizations who lead the fight against pediatric cancer. https://www.loveyourmelon.com/
11. Massachusetts General Hospital: Rachel had an amazing team at MGH – the pediatric oncologist, nurses, music and art therapists, radiation oncologists, the orthopedic oncologist who performed her surgery, the plastic surgeon needed to make sure her spine would be covered properly: she was definitely in the very best hands. http://www.massgeneral.org/about/giving.aspx

Wow – writing this all down really makes me realize just how much help we’ve received in the past year. We are so thankful to everyone who has supported us along the way – the aforementioned organizations as well as everyone who has sent us cards and gifts and helped to make this past year just a little bit less awful. ❤

And now for the update: Rachel met with her local oncologist a week and a half ago. She got another IV antibiotic treatment (to prevent a certain type of pneumonia) while she was there and we learned that it will be the last one of those that she will need (they were once a month.) Yay! They also checked her blood counts to see where those are at now. Her white counts are pretty much in the normal range now, red blood cells are almost normal, platelets are still a little on the low side (nothing to worry about, just not back up to normal non-chemo range.) Her doctor is going to schedule her for post-treatment ekg/echocardiogram, chest CT scan, and MRI (or maybe just CT – not quite sure.) AND…Rachel is scheduled to have the surgery to remove her IV port removed this coming Wednesday, November 29 – the official final step for the end of treatment. ❤

This post is a bit overdue – Rachel and I got home from Boston Tuesday night. Her last radiation treatment was on Monday afternoon. Due to the wind/rain storm and all the power outages, we decided to stay in Boston an extra night. Here is a gif file of Rachel “ringing the bell”, signifying the end of her radiation treatments on Monday (can’t seem to get the actual video file to look right on here):

Everything went well with Rachel’s treatments. The first week the pain from her September surgery got quite a bit worse with the radiation treatments making it harder for her body to heal. We feared this would get worse as the treatments went on, but thankfully, the second week the pain was better.

On Saturday, October 21, we attended a Bruins game; tickets were generously donated to families staying at the Ronald McDonald House and were for one of the executive suites. It was a great game – right up until the Bruins lost in overtime. We had a fantastic time anyway.

Rachel and I kept ourselves busy enjoying Boston as much as we could: visiting the aquarium again and taking in one of their IMAX movies; visiting the Museum of Science; having dinner at an Italian restaurant in the North End (a must when you visit Boston!), near the Paul Revere statue; and enjoying the Harborwalk Trail near our apartment. We also enjoyed some “dog therapy” one night at the Ronald McDonald House.

Rachel is now done with treatments, as far as we know. Her next step will be to have outpatient surgery to remove her IV port, which should be relatively soon. The information we’ve received from her oncologists thus far is that they’re leaving it up to Rachel as to when she wants to have it removed. Once that is complete, she can focus on recovering from all the treatments and surgery. She will need to have follow-up scans every 3 months to check for recurrence, but as of now she is cancer-free. ❤