Happy 3rd Birthday! :)

It has been a long time since my last post, which seems to be an ongoing theme and I am sorry for that. A lot has been going on with Alyssa and to be honest, I haven’t been wanting to think about it. It’s very emotional for me and I’m still not ready to talk about it all. I will share that it is about her lungs, and there is no clear diagnosis. I will post soon once I hopefully receive more answers from her doctors.

However, we do have good news πŸ™‚ Alyssa has been to St. Jude Children’s hospital for more visits and her chimerism results still show that she is 100% donor 2 (my cells)!!! Yay!!! Also, in 5 more days, on October 15th, we will be celebrating Alyssa being in remission for 1 year and 7 months!! Her next visit to St. Jude in Memphis will not be until the end of March for her 2 year follow up and testing. Until then, Alyssa will be followed here at McMaster and is in the process of seeing a Pulmonary Specialist at Toronto Sick Kids.

Alyssa has grown a bit taller, but still struggling to gain weight. Her speech has improved immensely and my job as a translator has now gone down to a part time position πŸ˜‰ Alyssa is mastering potty training, which she is so very proud of herself.

Alyssa has a love for animals, all animals, except for turtles and elephants which she wants nothing to do with them. Her love of cats is tremendous, I sometimes wonder if she’s part cat haha She will meow like one, she jumps into baskets and boxes, then she just relaxes in them. She will watch youtube videos of cats and kittens all day if you were to let her. She now carries around a stuffed animal kitty cat, that must sleep with her, and go wherever she goes at ALL times.

She knows that I am seriously afraid of spiders, so if you ask her what mommy says when she sees a spider she will put up her hands and scream, “Ahhh!” It’s so cute!

With everything going on with Alyssa’s health lately, we will be isolating her a lot more now, especially since flu and RSV season is upon us. This means we will probably not be taking her trick-or-treating, Thanksgiving and Christmas will be spent at home with no visitors. Unfortunately, these are the kind of precautions we need to take to make sure Alyssa’s health doesn’t decline and prevent us from being admitted into the hospital. So, maybe this year Alyssa will just go trick-or-treating inside the house, she can visit all of her stuffed animals and they will hand her some treats and goodies πŸ™‚

Today is a very special day…..Alyssa’s 3rd birthday!!! It will of course be a small celebration at home with balloons, cake, presents and love. Miss Alyssa received one early birthday present two days ago….her pink race car bed. My little girl LOVES cars and trucks. Her favourites are the big transport trucks and garbage trucks. She cheers whenever we see them while driving in the car. Monday is garbage day where we are and she gets so excited for the garbage and recycling trucks to come to our house.

So, later when big brother comes home we will be opening presents and enjoying an Elmo cake picked out by the birthday girl. It’s amazing to be celebrating 3 years of life with Alyssa. We were told so many times that we would probably never see this day. Our little girl is a true miracle, a special gift to us that we will always treasure and be grateful for.

Happy 3rd Birthday to my little peanut Alyssa, you have taught me so much….how to fight, never give up, how to find strength when you feel defeated, how to hold on to hope, and about endless love. My sweet girl you are my inspiration, my hero, my super girl. xoxoxoxo

Just incase you missed it before, Alyssa has a Facebook page, so if you want to send her a friend request it is Alyssa Riley McLintock. I post more frequent little updates and pictures on there. πŸ™‚

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Bradshaw 13th Annual Golf Tournament

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Happy One Year Sweet Alyssa xoxo

Lots to update πŸ™‚

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! πŸ™‚ 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. πŸ™‚

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.


Brighter days :)

We hope everyone had a wonderful Christmas, and happy New Year! πŸ™‚

We felt so very lucky to celebrate this past Christmas together and are so thankful for every day that comes that we get to spend with our sweet girl. Alyssa loved opening all of her presents and even helped her big brother Jake open his. It was a quiet day at home but it was one I will cherish forever.

We recently celebrated Alyssa being 300 days post transplant. Yay Alyssa!!! We are so close to her one year date, March 15th. As excited as we are, we unfortunately know that she is not out of the woods, but I will not allow myself to focus on the negatives. Each day is a celebration and every time I look at my baby girl, I am amazed at how far she has come.

Miss Alyssa is changing every day. She is now 2 inches taller, speaking more words and forming sentences. She still loves to sing and dance around the room, especially when Sesame Street is on the television. She is a wonderful helper around the house, and is such the little comedian. Her personality just shines and I absolutely adore her. She loves to give hugs, big squeezes, and pats you on the back so gently, or rubs the side of your face. If you are sad or if you hurt yourself, she is the first to say a big, “awwwwwww” and runs over to give you the biggest hug and kiss. πŸ™‚ We are just enjoying “normal” days together. They can still be a bit hectic, hospital visits, all the medications she needs to take throughout the day at certain times, her lovely temper tantrums that are brought on by the steroids, etc. It will continue to get better and get easier and I don’t take any day for granted. There are nights where I will stay up for hours, just watching her sleep beside me in bed. Some nights I cry, because I am so grateful but also so sad that she had to endure so much to get to this point. Every day I get little glimpses of the woman Alyssa is going to be when she grows up. Yes, Alyssa will grow up, and she is going to do something spectacular with her life. She is sweet, loving, caring, and gentle, but she is also feisty, strong willed, so determined with everything she does, she never gives up. Even when she is trying to tell you something, she will repeat it over, and over, and over, until you acknowledge what she is saying by saying those exact words. You can’t talk about anything else, cannot move on, until you say those words and understand her. When you do, oh my goodness, she lets out the biggest, “oooohhhhhhhh” , like you finally got it, and sways her head from side to side and laughs. She is just awesome! πŸ™‚

We are heading back to Memphis this coming weekend. Alyssa’s bloodwork has been good, her liver enzymes have also come down, one of the numbers is actually almost in normal range. That hasn’t happened in almost a year. Alyssa will be having routine bloodwork done, a visit with her doctors and a vist with the pulmonary doctor for a follow up visit.

Alyssa’s breathing has improved. She’s still breathing faster than she should be but she is better than what she was. We are hoping to continue weaning her off of her immunosuppressant and steroids. Once she is off of most of her medications, we can probably take near NG tube out of her nose. She has been living with a feeding tube ever since she was diagnosed at the age of 5 months. Almost 2 years she has lived with one, I couldn’t imagine. I can’t wait to see her beautiful face without that tube and tape on it.

Almost 2 weeks ago, Alyssa’s central line that is in her chest, developed a hole in it. Her line is how they draw blood from her, put in any IV medications and fluids. Luckily, the hole was on the outside and near the bottom where they draw the blood from. I was a nervous wreck, scared that if the tiniest piece of anything got into her line, it would go into her bloodstream and she would be at a high risk for a blood infection. Then I worried that the line would not be able to be fixed and the doctors would need to pull it out. That would not be an ideal situation since she still needs to get regular bloodwork, with her breathing issues and her liver counts still not in normal range yet. So, the next morning we went to the hospital and the surgeon there just snipped off the part that had the hole, and attached a new piece, reinforced it with some special glue and left. Seemed too easy to me, but it works and that is great! Then we received the good news that as long as Alyssa’s breathing doesn’t get worse, we can now stop going to clinic every week but start going every 2 weeks. Yay!!! I was thrilled to say the least.

So now we wait for our trip to Memphis, hoping for all good news there. Alyssa will be having her chimerism test done again, fingers crossed! Alyssa is so excited to see her special friends at St. Jude, Lane, Pam, Deborah, Rita, Katie and so many more who we can’t thank enough for making St. Jude, our home away from home, that much more special.

If you would also like to follow Alyssa on Facebook you can send a friend request to Alyssa Riley McLintock. Its easy for me to post pictures and quick little updates about Alyssa on there. πŸ™‚


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 πŸ™‚ 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! πŸ™‚

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 πŸ™‚ 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.


More Bumps in the Road

Today is Day +242 post transplant for Alyssa, and there are still many bumps in the road for her. I have not been able to update until now as we have been so busy being in and out of the hospital and many check ups with her oncologist.

Alyssa was admitted the weekend following her birthday. She was breathing very fast, short, and loud. We first called the on call oncologist, who made sure there was a room ready for us in the ER. When they checked Alyssa’s vitals, we were very shocked at the results. Her temperature was good but her O2 saturation level was only at 82%, she should be 100%, and her breathing was around 90 breaths per minute and she should be around 30 per minute. It was very scary, and they started with doing bloodwork, put her on a broad spectrum antibiotic, and gave me a little tube that blew out oxygen to hold up in front of her face to help her breathe easier. Alyssa won’t keep the nasel cannulas on her face so that was the next best thing to do.

We eventually got a room back in good old’ 3B ward, where Alyssa spent half of her treatment. Being wheeled back into there just made my heart and stomach sink and ache. Alyssa had a chest x-ray, and an ultrasound of her heart done. The x-ray seemed to be clear, but the ultrasound of her heart showed there was a mild case of fluid around her heart. It was heart wrenching to hear those results but relieved to hear that despite her breathing difficulties and the fluid, her heart is functioning normally. A big fear that the doctors had was that Alyssa’s body would tire out and so she was monitored closely and had many different visitors coming in to check on her.

They doctors decided to put Alyssa back on a therapeutic dose of her immunosupressant drug and also raise the dose of her steroid to a much higher dose. Her breathing seemed to improve, though not back to normal, there was improvement. The doctors felt that Alyssa may be suffering from GVHD of the liver as well as the lungs.

Alyssa was discharged after her things had improved and a week later we were off to St. Jude in Memphis for a check up. Alyssa had another chest x-ray, heart ultrasound, a dental check up, an eye exam, and a visit with her clinic doctors. Her bloodwork looked ok and the x-ray showed a bit of thickening of her bronchials. They believed it may be caused from something viral that she may have had, but couldn’t be sure.

A couple days after arriving home from Memphis, the plan was to start decreasing her does of steroids. A few days later, Alyssa’s breathing started to slowly increase. As the days went on, and her breathing rate increased, the decision Was made to put her steroid dose back up to where it was until further tests were done.

Alyssa was admitted early last week in order to be sedated for a CT scan of her lungs. We were lucky enough to be discharged late the following night. The results showed sporradic patches on her lungs, which the doctors at McMaster Children’s Hospital believe it to represent GVHD of the lungs. If this is the case, she would be considered to have chronic GVHD, which is much more difficult to treat. Her liver enzymes are also continuing to increase, and are once again in the critical range.

The doctors here have sent the doctors at St. Jude, the copy of Alyssa’s CT scan on a disk, so that their radiologist can have a look and give his opinion. I have done the worst thing I can do, and I have researched GVHD of the lungs online, and of course, I have come across the worst possible outcomes. I am really hoping that this will all be under control soon, Alyssa can breath easy again soon, and that there is no permanent damage to her lungs and liver, which is a very likely possibility.

We will be returning to St. Jude in Memphis, in a few weeks. We were told to stay a bit longer this time, incase tests need to be done and there is a chance of a liver biopsy to confirm GVHD of the liver.

Alyssa will be going to her clinic visit on Wednesday, here at MacMaster and I am really hoping that we will have more answers and a possible treatment plan.

After everything she has gone through, she kicked cancers butt, but now she has to suffer from the side effects of the treatment and we are not sure what the outcome is going to be. It’s so scary, she’s just not getting any better.


Happy Birthday!

10.10.10……

That’s the day my whole life would change. Miss Alyssa was called a “lucky” baby because of her birth date. I didn’t know how much that word would actually mean to us in the near future.
I took out Alyssa’s bravery beads today and all of the memories just came flooding back. Each bead represents something she has endured throughout her journey, I am in total shock to see how many there are. Here are some of her totals, and they could be higher, as we may have missed counting some during difficult times:

Pokes(for bloodwork): 129
Blood Transfusions: 74
Doses of chemo: 118
Tests(X-rays/ultrasounds): 71
Dressing changes(covers her central line): 133
Surgeries: 11
Tube insertions(NG tubes/catheters: 54
Bone Marrow Aspirates: 13
Lumbar Punctures(spinal tap): 17
Bone Marrow Biopsy: 4
Central line insertions: 9
Sedations: 33
Illness/infection(some life threatening): 18
Bone Marrow Transplants: 2
Echo/EKG tests: 11
ICU admission: 2
Endoscopy: 1
Blood thinner injections(into legs, or belly): 2x per day for 29 weeks

That is not even the whole list. Her beads will reach from one end of the house to another. My poor sweet girl. I am going to ask everyone to please consider donating blood and/or consider registering as a bone marrow donor. If it wasn’t for some amazing people who donated their blood, Alyssa would definitely not be here today. We were told on more than one occasion that there was a shortage of donated platelets. That is not good. We need more people out there donating. So please consider it. πŸ™‚

Looking at all of those totals is hard but I take comfort in knowing that Alyssa is so young that she will hopefully never remember her tough fight, but instead will get to hear the stories of how she kicked cancers butt and how strong she was doing it.

Today we celebrated Alyssa’s 2nd birthday and I am so very thankful for that. It was a small gathering but we made it as special as we could for her. There were balloons, streamers, and Sesame Street decorations all over the house. Elmo & Cookie Monster birthday cake and wonderful presents that she will enjoy for a long time.

Pictures will definitely be posted very soon of her special day, hopefully later tomorrow. πŸ™‚

We received good news from St. Jude, Alyssa’s tests results from her latest trip on Sept. 26th shows that her chimerism is still 100% donor 2 cells(my cells). Also, the doctor said that her immune function looks good with a T Helper cell count of 700, which was only around 260 the month prior. All great news πŸ™‚

Tomorrow will be Day +210 for Alyssa, almost 7 months post transplant. We will be traveling to St. Jude again this month, where she will be having bloodwork drawn, clinic visit with her doctors, and an eye and dental check up. The doctors have started to wean Alyssa off of her immunosupressant as everything seemed to be going in the right direction. Since the weaning process began, Alyssa’s liver counts are once again rising. This is so frustrating for us, I feel like we are never going to get them down within the proper range. We are waiting to hear back from the doctor as to whether or not to continue weaning her or if she will be put back up to her original dosage. Other than her liver function numbers, her other counts look great! All within “normal” range, which is wonderful!

Thank you everyone for all of the wonderful birthday wishes for Alyssa.
She had a lot of fun today!! xo

 


Yay!! Day +200!!!

Day +200….I can’t believe I’m finally saying it. Today Alyssa has been cancer free for 200 days!!! Every day is a small victory, but when we finally reach big numbers like this, well…you do what I do….a happy dance πŸ™‚

Last week, Jacob, Alyssa, and I flew down to Memphis for Alyssa’s monthly visit at St. Jude. All of her lab results looked great, and her liver enzymes are still on a wonderful downward trend. The doctors said that Alyssa looked amazing and we were finally given the green light to cut down our hospital visits at McMaster from twice a week, to once a week. We are still waiting for Alyssa’s chimerism test results. This test is only done when we visit St. Jude, so it’s been a whole month since her last one. Please still be 100% my cells!

While we were at St. Jude, Alyssa was scheduled to have a dental procedure done, which she had to be sedated for in the O.R. She had 2 silver caps placed for her 2 cavities. She had her two bottom eye teeth fixed and then came the phone call in the waiting room. The dentist had to pull out Alyssa’s two top eye teeth. They both had cavities inside of them and they were also malformed. They were half the size they were suppose to be. All of this was caused by all of the toxic chemotherapy Alyssa has received over the past 19 months. Also, during Alyssa’s treatment, the chemo made Alyssa very sick which caused her to vomit a lot which also caused some damage to her teeth. We are really hoping that her adult teeth are ok and healthy, but if not, that’s ok, we can fix it πŸ™‚

So poor Alyssa has lost two teeth, too early, but we were very lucky to have been able to keep them both and we are expecting a visit from the tooth fairy soon.

I still can’t believe that in 9 days, my sweet girl will be 2 years old. We feel very lucky to be able to share this day with our princess.


Pictures :)


Day +180 :)

Today is Day +180 for our sweet girl and I am so happy to say that Alyssa’s last bone marrow aspirate showed that she is still leukemia free and is once again 100% donor 2 cells(my cells). Β This coming Saturday will be a big day for Alyssa….she will be 6 months post transplant. Although there is always a chance for relapse, there is a higher chance of relapse within the first 6 months post. Alyssa relapsed only 4 short months after her first transplant last year. To know that she has come so far and watching her strength, her strong will to live, brings tears to my eyes. Tears of sadness, knowing how much pain, suffering and pure torture she has had to endure. Then, there are tears of joy. Joy that my sweet girl is still here. Watching her play, dance, laugh, and the ability to finally be herself. Enjoying life like a little girl should, well as much as she can for now, it warms my soul. Every one who knows Alyssa including the staff at St. Jude, are always commenting on how happy she is. No matter what she has to go through, she is always smiling and laughing and oh my goodness, she is known as the entertainer. She has everyone in the entire clinic gathered around her, in stitches. She makes everyone laugh and she is just a true delight. I am so lucky, and honored to have her as my little girl. I don’t know what I did to deserve such 2 amazing children, but everyday I am so thankful that I do.

Although we have been so lucky to have such wonderful news regarding her bone marrow tests, Alyssa is still having to deal with GVHD of the skin and possibly the liver. During her last procedure at St. Jude, they did a skin biopsy from Alyssa’s back to see if it was in fact a GVHD rash that covered a majority of her body, looked like a really bad sunburn on her face. Poor thing had to have a stitch in her back after the biopsy πŸ™ The test confirmed it was grade 2 GVHD. Alyssa’s liver enzymes were also very high and had reached within the critical range. So the plan was to put her on a steroid and then start her on her immunosupressant drug once again. The steroids seemed to help and her liver counts were finally on a downward trend. While in Memphis, Alyssa spiked a fever which means you are being admitted for a minimum of 48hrs. The nurses took blood cultures from her central line in her chest and she was started on 2 antibiotics right away. Alyssa’s labs showed her white cells doubled which means she was definitely fighting something. A couple hours later Alyssa’s fever was gone but we still needed to be admitted just incase. Her blood cultures never grew anything and her counts slowly went back to “normal”. We were lucky enough to be discharged 48hrs after being admitted and the antibiotics were discontinued. We arrived in Memphis on the Sunday and finally flew home on the Monday of the long weekend. Just in time for Jake’s first day of Grade 5 πŸ™‚
Since being home Alyssa’s counts have seemed to be ok. We started to wean her steroid, for now she is just receiving a low dose once a day. However, since the weaning of the steroid we have all noticed that her liver enzymes are starting to once again trend upwards instead of down. This is being monitored closely by the doctors.

We will once again be returning to St. Jude at the end of this month, for a check up and then Alyssa will finally be getting her teeth fixed. During her last bone marrow procedure, the dentist was able to give Alyssa a quick exam while she was sedated. He told me that Alyssa does in fact have 2 small cavities, one on each side, which they will be either filling or placing crowns on them. Also, 2 of her teeth have little enamel on them, but the rest are fine. Then he surprised me by telling me that Alyssa’s two top front teeth are loose. That was the last thing I was expecting to hear. He said it was probably caused by one of her falls, which she has had a few of during her learning to walk phase and from the natural gift of clutziness I have so lovingly passed on to both of my children. So, he will be taking care of her teeth while we are there and will also be doing an X-ray of her teeth during the procedure to check for any unseen damage that will need to be fixed. Chemo is so hard on their little bodies, especially since this is the time their bodies are growing and developing. You never know the extent of what that horrible toxic chemo has done to them. So, we are hoping for no more surprises and praying that her adult teeth are healthy.

As of yesterday, Alyssa is 23 months. One more month and my peanut will be two!! What a celebration that will be. As much as I would love to have a big party with all of our family and friends, we will have to have a small family gathering. Alyssa’s immune system is still very weak and cannot be around the general public, large crowds, and other children until she is at least a year post transplant. It may have to be a small party but we will make sure it is a lot of fun πŸ™‚

It has been some time since we have posted pictures of Alyssa, so sorry. I will be sure to post some updates pictures for you tomorrow. She has so much hair, I love it! Also, I have received a few emails from others asking for our mailing address so I will add it to our contact page on this website but I will also post it on here.

Thank you again to everyone for your continued love and support during Alyssa’s journey.

P.O. Box 72
Port Robinson
Ontario, Canada
L0S 1K0

alyssarileymc@gmail.com