Home from Memphis

One of Alyssa’s doctors from St Jude called and said that we needed to fly out to Memphis and a flight was booked for the following Monday. The doctors reviewed her ct scan results and were very concerned by what they saw. So much so that they wanted her back at St. Jude as soon as possible. They said that it could be GVHD of the lungs but they were not convinced and further testing would need to be done.

We arrived in Memphis on Monday and I took her straight to the Medicine room to have her sats and blood pressure checked. I was a bit worried by her rapid breathing so i wanted to ease my mind. Her sats were good but because of her latest results they did an EKG test and an xray. Everything looked good so we were able to leave and get some rest before her appointments would begin early the next morning.

Alyssa had her routine bloodwork done, clinic visit, another ct scan which she did without needing to be sedated for…what a champ 🙂 and a visit with the Pulmonary doctor. Alyssa was scheduled to have a BAL test the next day, Wednesday. A BAL test is when they insert a scope into the lungs and it injects the lungs with saline and then sucks it back out. They then test the sample for infections and viruses.

Alyssa’s BAL test went well and I was told that they were able to get a good sample. Alyssa had to be admitted overnight for observation and for a little while post procedure, she needed some extra oxygen. Another heart ultrasound was performed while we were inpatient and the results still showed there to be a bit of fluid around her heart, so no change there. The next day we were discharged and waited for the results.

All of the test results from the BAL test came back negative, so the next step was to do a lung biopsy. Everyone that spoke there kept telling me how big of a surgery this was and it just kept scaring me more and more. The surgeons told me they would be making three incisions on Alyssa’s right side and would be placing a scope/camera inside, they will find the best spot to take a sample of her lung and would leave behind titanium staples. Staples…..in her lungs….that will never be removed….I still can’t get past that. As long as everything goes well, she should only be inpatient for one night. Then came the “but”. If they cannot get a good enough sample of her lung that way, they would need to switch over to an open-lung biopsy. This would mean they would need to make a large incision underneath her bottom rib, possibly may need to break the bottom rib. She may be left with a tube coming out of it for hours after the procedure. She would take much longer to heal and would be inpatient for longer. Then came the talk about pain control. If she needed the open-lung biopsy I would need to consider consenting to an epideral to be done for her because it would be easier to control her pain that way. I wanted to cry thinking that she would be in that much pain. Then I was told that she will be intubated for the procedure that could last up to 4 hours and there may be a chance that she will come out of the surgery still intubated. That is a sight I never want to see again. The last time I saw that was when she was first diagnosed and was struggling to live.
I seriously could not wrap my head around everything the surgeons were telling me. I just kept telling myself not to worry, it has to be done, it is out of my hands and they will take great care of her here.

So, Alyssa’s “major lung surgery” was scheduled for Tuesday, the 27th, and I was so nervous that day. From the time I woke up all I wanted to do was just run away and take Alyssa home but I really knew that wasn’t an option. I just kept wondering if there was any other way besides this biopsy that we could figure out what was wrong with her. Of course, I came up with nothing. So off we went, and waited for it to be her turn to walk down the hall to the operating room. That was very difficult for me to leave her there, even though she fell asleep with me holding her, it just didn’t feel right to leave her there. The nurses were wonderful keeping me updated on how things were going. Finally, the surgery was done, everything went well. They were able to get two samples, they didn’t need to do an open-lung biopsy, and she wasn’t intubated any longer. Thank you St. Jude!

Alyssa was in a lot of pain when she woke up after the surgery. She was thrashing around and screaming, very difficult for my heart to handle. We eventually made our way to the ICU where she would need to stay for the night for observation. Again, Alyssa needed extra oxygen during the night. She was very scared of everyone that entered her room. I had to sit beside her bed in the world’s most uncomfortable and hardest chair until the next day. I had to sit on the side of the bed closest to the door so that I would be blocking her from anyone who entered. That is the only way she would feel safe enough to fall asleep. So there I sat, all night, right beside her bed, patting her back or holding her hand, just so she knew mommy was right there with her.

It was a rough night but Alyssa was discharged and we went back to the Grizzly House. Alyssa stayed in bed for the rest of the night, too sore to move. By the next morning she was like herself, you would never have known she just had major lung surgery. She truly amazes me. The next step would be to continue to wait for the biopsy results. Those seemed to take a long time but when we finally received the results, we were all happy. The doctors even said this was good news. They could not find any evidence of GVHD in her lungs. A sigh of relief….that would have been a very long road of treatment. The results…she has Pulmonary Edmea. Still scary, to me, but treatable. I asked the doctor if I should be worried and he told me that the ones I had to be worried about, came back negative. So I will take that and go with it. The doctors suspect that when Alyssa had a cold before, it ended up getting into her lungs, causing a lung infection and now this. Alyssa received an infusion of a special drug which is suppose to eventually help and she is taking an antibiotic every Monday, Wednesday, and Friday, which she will probably be on for a couple months. We also started weaning Alyssa off of her immunosupressant and steroids. Really hoping that all goes well with this. We can’t wait for her to finally breath easy and normal again.

Oh, Alyssa’s chimerism tests still show that she still has 100% donor 2 cells, my cells. Yay!!!

Despite all that she is still going through, Alyssa is still continuing to thrive. She is saying new words all the time, putting together sentences, and seriously making us laugh. She has such an amazing personality, she truly shines. While in Memphis, Alyssa found a new love of hotdogs. It would be her first word when she woke in the morning and the last word before bed. It was a long wait for lunch some days and all she would talk about to us, including the nurses, was hotdogs! 🙂

Since being home, Alyssa has discovered a new food. M&Ms! She has never gone for any sweets….until now. She is really starting to try so many new foods and we are so happy about that.

Alyssa has a follow up appointment with the doctors at Toronto Sick Kids this week. She’ll be getting bloodwork done and meeting with the transplant doctor there to see how she is doing.

We heard some very devastating news today. Alyssa’s friend Phoebe, who has fought the same fight as Alyssa, has relapsed. She just celebrated her one year remission day. Our hearts are breaking for this family and we ask that you please keep them in your thoughts and prayers as they once again need to fight. This of course puts such fear in my heart, not only for Phoebe, but for Alyssa. I will try not feed into those fears and will try to remember what the doctors have said from day one, every child is different. Every child writes their own story. I will continue to try and keep holding on to hope that Alyssa will be the exception. That she will be ok. That Phoebe is going to seriously kick this cancers butt permanently. They are going to have such amazing stories to share when they get older. You can follow Miss Phoebe at phoeberoserocks.blogspot.com

Alyssa’s other friend, Matthew, also needs lots of love and prayers. His latest MRD results have shown that the leukemia is increasing. He is the sweetest little boy with the strongest mommy I have ever met. I pray that they will have a new plan set in place to finally rid this angel of this terrible disease. This is what fuels my anger of the lack of acknowledgement there is about childrens cancers. There is lack of funding and people really don’t know anything about it. I know I had no idea about any of this before Alyssa was diagnosed. Why is there so many commercials about adult cancers, or third world countries, etc. not saying that those are not important but why do we rarely ever see anything about Childhood Cancer??? So many children are dying every day and its not right and it’s not fair. We need a change! We need awareness!!!

With everything going on I am going to continue to focus on what is happening now, and that includes my sons birthday. I can’t believe that my Jake is going to be 10. Double digits! He is so excited for that. I don’t think I could be prouder of my son. He has also had to deal with so much during our difficult journey. Even now, he still has a lot to except. When he is sick, like he was a couple days ago, he cannot stay here so I can take care of him. I have to send him to my parents until he is well again, so his sister does not get sick. He has also helped during Alyssa’s doctor appointments and even helps calm his sister down when she is in pain or is scared. I hate that he has to go through this but I am so proud of him and love him so much. He is the best son and the best big brother! A young boy, Chris West, who is fighting his own battle , has set up a page on facebook for siblings of cancer patients. It is a page that allows people from all over to send birthday cards to the siblings and put a smile on their face. Put them in the spotlight on their special day. I am so grateful to Chris and his family for putting Jake on their Facebook page, Smile for Siblings. To follow Chris’s journey you can like his Facebook pages…Chris’s Crew and Smile for Siblings. This is one incredible young man 🙂 with a big heart!

So, hoping for good lab results this week and that Alyssa will continue to improve with her breathing. Again, please keep Phoebe, Matthew, Chris, and their families in your thoughts and prayers.

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