Monday, 12 May 2014

One day at a time..

What a roller coaster the last month has been!
We unfortunately found out the hard way that Hayden is allergic to one of the chemo drugs she was to have.  She has had this drug 2 times before.. and we knew that a reaction could happen after the 2nd, 3rd or even 4th dose of it (like an anaphylactic reaction).. but we had no signs the last few times so I surely thought this past dose would be a breeze.  Well, 15 minutes into her dose she started to get super cranky, and almost found herself getting extremely uncomfortable. She was also starting to breath really hard and her poor little lips started to get puffy. Luckily her tongue and air way were fine! They had to quickly give her a dose of benedryl and a steroid to help her. We got admitted that night for observation and she was fine for the remaining of the evening. But let me tell you, that was probably the scariest thing to witness as a mother.. especially since I could do nothing for her. Thankfully we were in the right place for her to have the reaction and the nurses and doctors acted extremely quickly, and within a few minutes of her getting the benedryl she was in a good sleep.  So, i'm sure you are all wondering what happens next if she has a reaction to a medicine that is supposed to help her in the long run.. I wondered that too! But then I remembered that our doctor told us at the beginning that she always has a back up plan should such an occasion arise. SO - our next step was to recieve a drug called Erwinia. This chemo is a sister drug to the one that Hayden had a reaction too, and chances of reactions were a lot more slim. The reason they like to do the Pegasparaginase (first chemo she reacted too) before trying the Erwinia is because the Erwinia is 6 leg pokes spread out between 2 weeks - where as the pegasparaginase is done in one shot. I knew this road wasn't going to be easy, but my heart broke when I heard that she would have to be poked 6 times in the leg muscle.  We went home that weekend and prepared for our first leg poke on monday.  Well, to our surprise when we got to the hospital on monday, they decided to do the very first Erwinia treatment done through IV in childrens hospital on Hayden! We were so greatful that the needles weren't happening, but we waited a long time for the procedure to get on its way as it had to be signed off by the co-ordinator and so on..
About 5 minutes after her treatment, Hayden started getting cranky again and I started to panic. She then started to vomit, but thankfully that was it. We realized after that she likely will need anti-nauseant meds for each dosage from that point on. She went home that night and was sick a few more times, but was relatively ok! I could tell already that I wasn't going to like this drug, but it wasn't giving her a reaction so I just sucked it up! I know chemo meds can cause nausea - but we were doing so well for so long, that you almost think when things start to go wrong.. you start to feel defeated.  But, Hayden tolerated 2 weeks of nausea and we finally got to move on from that horrible stressful time in her treatment! The unfortunate thing is that in our 4th phase she will have to get Erwinia again, but luckily we get a 2 month break from that in our current phase (3rd phase is called Inter Maintenance). Hayden had a great easter weekend (even though she wasn't feeling 100%) but we found ourselves back at the hospital about a week later with a fever. Turns out she had a cold, and was put on antibiotics for 48 hours and then we got to go home! She unluckily got a yeast infection from the antibiotics, but after a few days we got a handle on it and she was back to her normal self.  I almost wondered to myself - how on gods green earth does this all have to happen to her?? Why can't she catch a break already?!?!?!
The following weekend we got to go to Wallaceburg for the Relay for life yard sale to support Team Hayden! What a great turn out they had, and thank you to all that was able to come and support us! We truly appreciate it!!! The walk is on May 30th, and as always - we are still looking for donations! Please, if you can, donate to Team Hayden on the website. You can donate directly to the team or individual walkers! It actually looks like Hayden is going to get to walk the track that night in the "survivors lap". I'm so excited for this. I'm sure it's going to be an emotional one for me.
This past friday we went into the hospital to have Hayden's counts checked to see if we were finally good to go so we could start our 3rd phase. They were!! She had a lumbar puncture that day and then we were admitted into hospital for the weekend.  After a long long long weekend we got to go home today and we were both extremely happy! Unfortunately it was raining, so we couldn't take Hayden outside to show her the big new surprise for her in the back yard!!!
After all the hard work that Pam Carson and our friends at Solowave have done - Hayden got an extremely generous playset for the back yard!! It was delivered on Friday by TST Overland Express (big thank you to Ben, Angus, and Al for helping with the delivery!!) and Jon was told that over 16 different drivers wanted to be involved in the drop off!  They helped Jon carry it to the back yard which let me tell you doesn't sound like it would have been easy since it weighs about 420lbs. So thank you for all your help guys! I wish Hayden was here to see you all, but once she sees it I will post a picture of her playing on it so you can see how happy you have all made her!!! Jon and my father in law Remi put what needed to be put together still on saturday and once the ground gets finished off we will have it complete! Thanks grandpa for all your hard work this weekend!!!!!

Thank you again to everyone that continues to send love, support, extremely generous gifts and donations to Hayden. You have all helped us not feel so alone in this fight! On mothers day night I looked at Hayden in her hospital crib as she slept peacefully with her I.V cord in plain sight. This isn't how things were supposed to be and that wasn't how I thought i'd be spending my 3rd mothers day.. but, I got to spend it with my little girl and that's all that matters to me at this point. Taking things one day at a time sure does suck.. and not being able to plan our life for the long run definitely doesn't sit well with me, but today i'm a happy mom because I get to play, and listen too, and watch my little girl growing up.. one day at a time. I'm truly blessed for the time I have to spend with her. Being home with her over the last few months has made me appreciate and love her so much more then I ever thought possible.  Happy belated mother's day to all of the wonderful mom's out there. Whether they are near to us, far away, or even in heaven watching down on us.. they love us like no other and always will.
Have a wonderful may long weekend. Stay safe on the roads, but have loads of fun in where ever your adventures take you! xoxoxo