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Spinraza Treatment Updates

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From Kate: 

I thought blogging was going to be easy once we got to Getty’s treatments. I was hoping to jump on and post about all of the the stuff that has been happening, but man, this has been hard. There have been so many things happening and so much emotion behind it, negotiating what gets documented and what gets left out has left me in some paralysis. This is the best I can do for now. 

First of all let me just say this for the record, Getty is doing awesome! She is patient, she is calm, she a soldier that just keeps going. So far not much has really bothered her. I think she is annoyed that we have to drive and stay in the hospital.  Then there are times I think she appreciates the change of scenery, regardless if it is at the PICU. 

Spinraza is administered into the spinal cord. I can understand how that alone can give one the heeby jeebies. Essentially a spinal tap every time this drug is administered. I WISH there was another way. But there isn’t at this time and this is where we are in this journey. We discussed this in great lengths as a family and we knew this was the right thing to do, knowing that the benefits might clearly outweigh the discomfort of an injection was what we wanted to invest in.

There were some things to consider before treatment: 

-Getty would need to be admitted to the PICU for every treatment. While it is a burden (equipment, back up equipment, supplies, back up supplies, clothes, books, iPad, medication, and negotiating control), at the end of the day it made sense to us and I am glad our doctors are remaining as conservative as possible. I also appreciate their understanding that I am primary caregiver. I was not going to relinquish my responsibilities to Getty’s care to people that do not understand the nuances of SMA and Getty. The doctors and I agreed on a “drawn line” of care and we went from there. As long as Getty was stable and did not need any extra care (IV, intubation, etc.) I would remain caregiver. Deal! 

-How was Getty going to handle all of this? She has always been a extremely calm and patient little girl, but would this be the deal breaker? We have been so hesitant to explain all of the details of this procedure for fear she would have so much anxiety. But after some discussion she was good to go. I wish I had a fraction of this child’s “whateverness”. Some side effects include headaches, constipation, respiratory distress, etc. Important aspects to be very concerned about post-injection. We could definitely remedy many of them, but some we could not, so we were very hopeful that the most extreme side effects would not rear its ugly head. 

-The plan for the first injection was overnight observation. Again, not excited about having Getty remain all night. We were being housed in the PICU, where the most critical children go for care and often times that can be children with respiratory issues. Very nervous about sharing our space with the potential to pick something up. But, it made complete sense. Spinraza, while revolutionary, is still extremely new for EVERYONE. While there are side effects, we were not seeing very many of them come to fruition in the SMA community, so we were hoping we would be good to go. How on earth was I going to care for her if when we got her home immediately after injection if something did come up? I didn’t want to even put Getty into a situation like that. Thankfully after the first injection, Getty was doing so well, we were allowed to go home after the 6 hour observation regulation. The second injection on the 4th of April was also a limited observation stay and we were allowed to go home after the 6 hours. 

The staff was terrific on both procedural dates. It was collaborative and transparent. We felt like this whole process so far has put Getty first. It is clear we are all working together to make sure she is thriving and we all have her best interest at heart. 

Both injections have been done in one shot. Thankfully finding the exact spot has not been an issue. Getty has to lay on her side and remain in the fetal position throughout the few minutes of treatment. The worry as always, is her respiratory abilities to remain as comfortable as possible in a very uncomfortable position. The two doctors in charge of her care have been more that amazing. One does the injection, while the other holds Getty in place and monitors her respiratory status. So far, she has been doing amazingly. While the position is temporary, her natural position is not to have her knees into her already compromised chest cavity. So knowing she held her numbers just fine was a huge relief. Mark and I have been allowed to remain in the room while the procedure takes place. We are allowed to help get Getty into position before the treatment, which again, is a huge relief. Positioning a child with incredibly low muscle tone can be complicated and I appreciate the staff’s willingness to let us take care of her. All was taken care of in about 5 minutes (positioning and procedure). 

Getty was just fine. I wish I could be more detailed but it was just that simple to her. She didn’t even wince when the needle went into her back. As her parents, were trying to compartmentalize what we “thought” she would be feeling, but again, our attempts to shelter her from any harm was futile. She was just fine and as long as Moana kept singing in her movie, all was perfect. In fact after the second injection Getty actually giggled. 🙂 I do not have a normal child. 😉 

After the procedures we remained in the PICU room until discharge. All patients need to remain flat for several hours after the injection. Lucky for Getty, she already remains flat, so we just hung out and watched some movies, read a book, and just tried to relax as much as we could before loading everything up and driving home. 

Post-treament has been a learning curve. It seems as though the next two after the injection, we just kind of lay low. Lots of increased liquids and around the clock Tylonel. Getty has not developed any of the side effects, thankfully she has been good. She is very tired for about three days. The first injection we did not go back to school for almost a week. After the second injection, I noticed Getty was more energetic and so in my haste I thought going back to school after two days should be good. Lesson learned for sure, she wasn’t ready and so we pulled back school for the entire week like last time. After the first injection we had some pretty crazy winds that brought some allergies for Getty. I think the combination of fighting off allergies and the 2nd injection just made her feel spent. 

So the big question really at this point is what has Spinraza done so far for Getty? I think I would like to answer this in a few ways. First of all, we have no expectations. In the most positive way possible, we just want this drug to stop the progression of SMA. I cannot tell you how important that is to all of us. We have found a way to adapt this world to Getty and if we can halt this stupid disorder and let her explore in her own way without the the worry of what SMA is internally doing to her, that would be enough. Period! I have grown to learn that you can find the best diet, get the best education, best of the best for everything Getty needs to grow and thrive, but there is always SMA. SMA continues to take things from Getty and we can’t do anything about that. It is such an unsettling feeling. It isn’t fair and at times it can just feel down right shitty. However, what Spinraza brings to this equation and this journey is an ally. We finally have a medical ally that has the potential to support Getty in ways we simply can’t. This is the support we have been waiting for since July 30, 2010. 

The morning of the 22nd, the day after the first injection we were already noticing some changes. I heard some robust yelling coming from her room. Getty has always had a nice loud voice. Non-verbal, but loud. Well I can tell you that her voice has become even louder and stronger. Getty has started to move her mouth up and down. Ever so slightly, but she is moving it. Something we have not seen since she was about two years old. While laying down and her legs bent, Getty can move her bent legs in an out with and without gravity. Again, something she has not done in years. Usually if you put her legs in a bent position, both legs will just kind of “frog out” and fall to the side. Now she is holding her own legs and making her own movement. The strength in her wrists are getting stronger. Getty’s ankles have also gained movement as well. I have been filming tons of footage but there has been no time to put everything together in a video yet. I am always posting videos of Getty’s progress on our instagram account. Gettyowl is the account name. 

This has been a very emotional process so far. Watching Getty move in ways we have not seen in years is a bit surreal. By nature compartmentalizing has pretty much been the norm. When good or bad things happen, I need to keep as composed as possible. I do this for many reasons, one of which, if I truly allowed for myself to be vulnerable, I am not sure if I would be able to get out of bed. SMA is heavy for so many reasons. There are so many emotions that come with it and compartmentalizing has given me a chance to move forward in life, knowing very well Getty is also terminal. It isn’t normal and I am sure I will feel the effects of this technique at some point in my life, but for now it is serving a purpose. However, watching Getty move her jaw up and down and seeing the look on her face as she moved gave me allowance to lose it. I cried like I haven’t in years. The concept of having a drug in the world that Getty is able to be the recipient of and to watch the effects of it in front of my face has been a miracle in real time. Watching Getty move her legs in an out, by herself has been insane. We were watching Rogue One the other day and something pretty incredible happened. We are watching a fight scene and my guess was that she was feeling the intensity of the scene with movement. Kind of like when a person cringes with excitement, she was doing that with her legs. The quick movement in and out was her physical way of showing excitement. Beautiful! 

Treatments are scheduled for every two weeks. There is a total of 4 “loading doses.” After the loading doses are completed, Getty will then receive treatments every 4 months. She is a champ and she is doing so well with everything being asked of her. We are so thankful that Getty is receiving this drug. There are MANY children and adults that are currently being denied this medication. Currently many families are fighting for care. Please keep them all close in your thoughts and prayers. Everyone with SMA that wants this medication should be offered it. Red tape is so very frustrating and so incredibly damaging to those needing the medication most. 

 

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  • Colleen Aquila says:

    Thank you Kate for sharing this incredible journey! Absolutely beautiful to read…. tears are just flowing & that’s a good feeling to be reading such moment by moment of Getty’s Accomplishments as she’s able to go forward ~ moving limbs that I’m sure in her beautiful mind she has moved already.. Love you Miss Getty Love, Uncle Danny & Aunt Jama

  • Faith Dunlap says:

    This is the best thing I’ve read in a long, long time. Excellently expressed, Kate. You guys are awesome. Love and prayers. <3

  • mike king says:

    I had a bout with meningitis when I was 27. My memory is that the spinal taps were not painful. I was suffering head pain, so perhaps that pain masked the taps.
    I write this to reassure you that the taps may not hurt. Certainly if she reacts, it may be painful, but I never suffered, so I hope Getty does not either.
    I’ve heard people say things about spinal taps, so I thought you might like my perspective.
    Best wishes, Mike

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