Happy One Year Sweet Alyssa xoxo

Lots to update 🙂

My last update was awhile ago, sorry. Our trip to Memphis in January was a wonderful, short visit. We received the news that Alyssa’s labs showed her chimerism to still be 100% donor 2 (my cells). Yay! 🙂 The doctors decided to continue to wean Alyssa off of her steroids but leave the immunosuppressant for now, until she is off of the steroids. They do not want her lungs to flare up.

Our next scheduled visit would be during March Break. This would be for Alyssa’s ONE YEAR post transplant visit.

Alyssa’s breathing seemed to be stable for awhile until around the end of February. She seemed to be breathing a bit faster then she had been and she was coughing more than usual. The doctors at McMaster could hear some crackling in her right lung. They ordered an X-ray to see what was going on. The results showed some inflammation around her biopsy sites and they were going to be cautious in case she had an infection brewing. So, we would return in 3 days to see how she was doing.

Over those 3 days, Alyssa’s breathing seemed to improve a bit, still fast, but she didn’t seem to be working as hard to breathe. The doctor was impressed with how she looked and said that her lungs sounded great. They believe that she may have had a virus and is now getting over it. All of her lab results looked good as well. Her liver counts are still improving, getting closer to being within normal range.

We flew to Memphis on Sunday March 10th, the flights were ok and settled in for the night at the Grizzly House. Our day of appointments on Monday started very early at 7am for labs. We would have a full day of appointments with no breaks at all. Alyssa’s appointments consisted of an echo/EKG, dental check up, Nutritionist visit, Endocrinologist visit, Pulmonary doctor visit, had her picture taken for her charts, and a visit with her doctors in clinic. I’m sure there was more but the whole day is like a blur. We were all very tired, grumpy, and hungry. Our day finally ended around 6pm, a very long day.

Our Tuesday was not as busy but Alyssa was sedated for her one year bone marrow aspirate, to see that she was still in remission. Her hearing was also tested during this sedation. After Alyssa woke up in recovery, we received the news that Alyssa’s hearing was fine. Good news. No more appointments, just lots of time for Alyssa to relax and feel better.

Wednesday was a bit hectic again for us. Alyssa was once again sedated, this time for a CT scan and MRI. This was to check her bone density and also to see how her lungs were coping with the pulmonary edema. To see if there was any progression or improvement. Due to Alyssa’s inhibited lung function, she had to be intubated for these procedures. Alyssa also had an eye exam and a new NG tube (feeding tube) inserted, during this sedation. When Alyssa woke up this time after sedation, she was very upset and nothing seemed to help her calm down. The slightest touch by a nurse would set her off again. After awhile Alyssa was able to leave and off to her next appointment which was an X-ray of her chest and hand. She was then suppose to have an X-ray done while drinking that disgusting barium swallow. I of course told them that there was no way I was going to shove it down her throat, especially with how she was feeling after just waking up from being sedated for 4 hours. The pulmonary doctor wants Alyssa to still have this test done sometime in the near future to see if she is aspirating while she is eating and drinking. Not looking forward to that test.

We saw the eye doctor and was told that there was no change in Alyssa’s eyes, which is good news. 🙂

The day ended with a visit to our B clinic doctors and nurses. They were all so impressed with how she looked and how energetic she was. Alyssa was having so much fun interacting and making everyone laugh. We were told such wonderful news…..Alyssa’s bone marrow aspirate came back clear, MRD negative. She is still in remission, one year after transplant. We were told she of course is still high risk for reoccurrence, but this is a big milestone. We’ll take it! I of course cried. Cried because I was relieved, happy and so extremely grateful.
We were told by Alyssa’s doctor that right now her lungs are only working at about 50% of what they should be. This is because only about half of her lungs are healthy and the other half show to be damaged tissue. This unfortunately will take Alyssa a long time to recover. We were told that because Alyssa is so young, her lungs are still growing, as she grows new healthy lung tissue grows as well. So, as she grows her lung function will hopefully improve. Like she has already shown us, Alyssa will have good days and then bad days. days where breathing may be a bit easier and then those days where she is breathing faster, louder, and becomes tired more quickly. She will never have normal lung function again but she will improve and breathing will eventually become easier for her. One day.

The plan is to continue weaning Alyssa’s steroids every 2 to 3 weeks. Our next visit to St. Jude will be in June, which she will be having a another CT scan of her lungs. We look forward to the days where our trips to Memphis become less and less but we are also saddened because we miss the great friends we have made there.

Our flight home was the worst traveling experience so far. We arrived at the airport in Memphis, checked our bags, and headed to security. After taking out all of Alyssa’s liquid medications, and formula, etc, one of the workers there needed to test all of her medications because we had so many liquids. This woman had something to prove right from the start. She did not like the fact that I needed to Lysol wipe the counter before she took out Alyssa’s medication. I told her it was for Alyssa’s safety as her immune function is very weak. By the way, the Lysol wipe was black when I was done wiping. After many smart ass comments by that woman, she then went on to Alyssa’s Nutren Jr., her food supplement (like Pediasure). She wanted me to open them but I told her that would be impossible considering the packaging. Once I peel back the foil opening, I cannot close it again and they would be garbage. She needs this food to eat throughout the day during our travel. So, because I “refused” to open them, I apparently needed to be patted down. I was in shock. I told her we have been flying back and forth to St. Jude every month for a year now, and never have we had to deal with this. Her response was that nobody was doing there job right then. I have never felt so humiliated as I did when she had to pat me down. A mom from St. Jude hospital being treated like some kind of terrorist in front of everyone going through the airport. Shoes off, sweater off, arms and legs out. Patting down EVERYWHERE. All because my child needs to eat during the day. Thank you Memphis International Airport.

Just when I thought the day couldn’t get any worse, after boarding our plane which was a bit delayed because they needed to switch out the planes for some reason, we were told that there was something wrong with this plane as well. The auto pilot was not working but they were going to try and fix it. After waiting for over an hour, they finally decided to have everyone get off the plane and cancel the flight. Everyone then had to find a new flight to get them home. Nice. So we found a flight, layover in New York City, and then to Buffalo. So we waited for that flight, boarded, and was eventually in the air. A bumpy ride but we arrived in NYC. Then we waited for our last flight home, a little bit delayed, we walked through the tunnel and was then told to get on a bus that would take us to our plane. It was dark, cold, and extremely windy. We were dropped off at the plane, the bus/shuttle left, and then we found out we were dropped off at the wrong plane. So we were all left stranded for a little while out there beside the plane. Poor Alyssa could barely breathe from the strong winds, so I did my best to keep her completely covered. Finally another shuttle came and brought us to the right plane. We boarded, waited about 20 minutes and we were told there would be a delay as a plane was parked behind us, not sure why, but had to wait for it to be moved before we could depart. We eventually did make it home, through all the chaos and being exposed to so many sick people on the flights. We arrived after 9pm in Buffalo, we were suppose to be home by 5pm. The saddest part of this day was that Jake had tickets to his very first ever NHL hockey game. Toronto Maple Leafs vs Pittsburg Penguins, Pittsburg being his favourite team ever of course. That’s all he talked about since we found out we were going to the game. According to our original travel plans we would have made the game. I will hopefully find a way to get him to another game, I will try my hardest. He so deserved those tickets, and I will never forget the look on his face when I had to tell him that we wouldn’t make it back in time.

When we arrived at our home, we couldn’t have been happier. Tired, hungry, and not wanting to ever travel again.

As difficult as it was, we still take away the wonderful news that after a year, Alyssa is still in remission.

On Friday March 15th, marked Alyssa’s one year post transplant day. It was a quiet day, spent playing. Just enjoying watching my children play. I wanted to donate blood that day, but due to medical reasons of my own, it will need to wait just a little bit longer. Thank you to everyone who donated in honour of Alyssa. What an amazing gift you gave to so many families.

On Sunday March 17th, St. Patrick’s day, marked 2 years since Alyssa was diagnosed. It was a day spent trying not to think back, trying to block the memories, and still loathing St Patty’s day. We did our best to focus on what we have, which we are so grateful for.

Every day I watch my two children play, Jake reading Alyssa stories, telling each other secrets, dancing and laughing with each other, or fighting like brothers and sisters do, and every time the same words come to mind…….Thank You.

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