The definition of brave is this: ready to face and endure danger or pain; showing courage. People often tell Morgan she is brave although she says she doesn’t really feel brave. Worried, concerned, inconvenienced, those are words she’d use when it comes to cancer. But she doesn’t spend her time thinking of that.
The last few months have been fun! We have packed as many activities as we could into our summer days and made lots of memories around 2 cycles of antibody+chemo. The treatment itself is painful but tolerable and we hoped to continue with it every other month through Morgan’s first year of high school. Neuroblastoma had other plans.
Scans this week showed no improvement and even a few new bony lesions of cancer. Not the news we wanted to hear. This has been a long road, almost nine years and Morgan is tired and stressed about things no 14 year old should even know about. Our girl is staying true to her character and is determined and wants to keep aggressively attacking this disease.
The plan is called mibg therapy. We’ve never tried it and hope it provides the knock out punch we need. Hopefully she’ll be done with the first round and back to start school with her friends.
We could use all the prayers, good wishes and positive thoughts you could send our way! Thank you for caring and checking in on our girl!
Chemo, a trip home and then a trip back to NYC. Morgan recovered from low dose chemo in March and we discussed how to move forward. She decided on a drug that has recently become approved for kids with nb- it’s an antibody that in her case is given with low dose chemo. There has been great response for some kids with refractory (won’t go away) or recurring (keeps coming back) disease. Before we could start this new drug it became clear that Morgan needed a mediport. A mediport is a small box surgically placed under the skin with a catheter going into major vessel for all iv infusions and blood draws. We decided to have Dr Laquaglia place the port while we were in NY for repeat scans. This was hard for me to stomach as the memory of septicemia is vivid in my mind from just two short years ago. Having a port brings a much greater risk of blood infection. It was not a decision taken lightly, but one that became clear would be the right one. Her poor veins are tired and need a break.
We came to the decision to try this drug because it is aggressive and is shown to have a good response but also because for Morgan chemo typically clears her bones of cancer while antibody (3f8) clears her marrows of cancer. We can’t combine 3f8 with chemo but we can combine ch14.18 with chemo.
So, we are trying something new.
We have been in St Pete inpatient all week, praying and wishing and hoping this is the thing that does it for her. She wants so badly to have a break from treatment but she wants to get rid of her cancer even more. And here we are. It has been a mild week compared to 3f8 although she does have pain with each antibody infusion. And nausea with the chemo and all the other issues that come with cancer treatment. Unlike 3f8, this antibody is given over 10 hours each day for four days, along with an hour of chemo each day for five days. It is given inpatient and includes a morphine drip along with a slew of other heavy duty drugs to combat nausea and allergic reactions. Tonight is our last night. As she sleeps, the last of the chemo drips into her veins to help kill whatever cancer is in her sweet body. Please let this work.
She will do this again in a month or so then we will scan and see if this is working. On our off weeks, we are going to finish up school and get our summer started.
Thanks for the support, we have been overwhelmed with so many giving hearts while Clint is out of work from surgery. It has been a trying few months but we will get through this. We truly could not keep going without our community. Thank you!
Morgan celebrated number 14 this week in NYC. She had a great weekend leading up to her big day with cake and rides at the Florida Strawberry Festival, a shopping trip to the mall with some b-day gift cards and a family shrimp boil dinner with friends. Before 3f8 treatment Monday, the hospital childlife staff brought cake and presents and after treatment we finished her special day with her favorite dinner at our favorite pizza place, spaghetti and meatballs from Delizias.
Tuesday morning we trekked through sleet and snowy, icy sidewalks to get to clinic for her mibg scan.
We don’t have final results yet but it was clear to me in the pictures and clear to the doctors at Sloan that Morgan has had a progression of her disease. This comes as a surprise, like it always does, but moreso because her bone marrow biopsies from last month were negative for disease. From the scan I could see spots in her shoulder, spine and hip.
So, the hu3f8 that she has been receiving since January cleared her marrows but can’t keep other disease at bay.
She is upset but remains calm and peaceful. We discussed options ans she has decided to start chemo again. We will stay here through Saturday to complete 2 days of IV chemo and then go home and rest for a few weeks.
Please pray, send positive vibes our way, we’re going to need them. She is tired but determined and we will continue to take our cues from our Sparklyflower.
Snow storm Niko came through Manhattan while we were there for the next cycle of Morgan’s treatment. It was beautiful to watch but not fun to navigate on the days following!
Morgan had a tough time this cycle, the antibody treatment made her tired, gave her headaches and an overall sick feeling all week. The Ronald McDonald House was full so we stayed at a nearby hotel. Even 5 blocks was too far for Morgan to walk to the hospital. She was in a bed or a wheelchair most of the week.
We did get to see a few friends while we were there and that always lifts our spirits and brings us comfort. As difficult as it is to be far from home, our family separated, we have a NYC neighborhood that we feel we can call our own.
On Monday Morgan had bone marrow biopsies. We should get the results from those early next week.
During the last eight years we have me some incredible people. Many of them kids with cancer and their siblings but also parents, doctors and friends. The love and support we have received has been instrumental in keeping Morgan in good spirits and nurtured with love. We have been able to focus on our daughter’s care and well being because of the kindness of others. We are so very lucky to have her here with us and we appreciate every message and prayer and good thoughts sent our way.
A few years ago, I decided to try and share with other cancer families the support we received when Morgan was first diagnosed. It is an impossible time where nothing makes sense and all you have are questions – a time when parents (and kids) need to focus on themselves, completely. We started raising money through the Heart of Gold Gala and we have helped more than 50 families over the last three years with more than $40,000 given. This year’s gala is Saturday and we hope, as a family we can continue this good work.
If you feel that you can give by attending or making a donation, please go to this webpage:
We hope you all had a Merry Christmas! Morgan started hu3f8 anyibody therapy this week. She has received a lot of antibody therapy in the past. 45 weeks total, although on different trials and at different times during the past 8 years. This hu3f8 is the same that she received in 2013 and 2014, however the dose she is receiving now is much higher than previous doses. We are hoping once again that this will clear her bone marrow disease and the spot still on her spine. She asked for this treatment specifically, since it is more aggressive and also allows her body to thrive, blood counts recover and continue to climb and she can overall feel better without the tough effects of chemo.
It is more painful because of the higher dose and there are more sever allergic reactions. Yesterday’s treatment was not the worst we’ve ever seen regarding pain/allergic reactions, also not the easiest. I think we were all happy just to get through the day with no major issues. She loses time this week, with pain meds and antihistamines, sleeing a lot. We are making the best of it and spending some of her Christmas goft cards today.
We’ll be in NYC for a while, then will return monthly for treatment as long as her scans and marrows improve or remain stable.
Please remember all the kids fighting cancer this year. There are so many. A few years ago it was estimated 40,000 in the US alone.
Please also remember those families who have lost a child to this horrible disease. We have many friends with an empty chair this holiday season and want to send them all our love, healing wishes and prayers.
We hope everyone has a wonderful Christmas and New Year season!
Fortunately, Morgan will be able to spend Christmas at home. She completed two cycles of chemo over the last two months. We hoped that would be enough to clear her of disease. Scans from this week show the MIBG is stable (still disease but no new disease) and her bone marrows show some disease.
Morgan has decided she does not want to do chemo but she does want to keep on some kind of treatment. She will start humanized 3f8 after Christmas. It is a much stronger dose than she has received before and has proven to clear bone marrow disease.
Lots of emotions are running as we passed the eight year anniversary of her cancer diagnosis in November. She has been fighting cancer for longer than she hasn’t yet she always tells me she wants to keep fighting.
Thanks for your prayers, well wishes and support.
Morgan had scans last week: the MIBG scans looks better-still disease but less; bone marrow biopsies are No Evidence of Disease!
Not sure what our next steps will be. Looking at all the options.
In the mean time- we’re celebrating our victories!
Thanks for the prayers and well wishes!