4 days later and we are all still reeling from the days events at the "No One Fights Alone" Family Fundraiser held by Active Health Associates in Cambridge. After being cooped up in either the hospital or our house for the entire summer, this was the first time that we allowed Nevan to leave the house and be among the public. We were very nervous and anxious about having Nevan there as his counts had fallen to quite a low level. His Neutrophils were previously at an all time high of 5.8 and had fallen to 1.0 before his surgery. No doubt, even more were used up to help his incisions heal. If Nevan got a fever we would end up right back in the hospital for at least 48 hours full of tests and antibiotics. We talked about it and as we watched Nevan talk about "his party" non-stop, we decided it was worth the risk.
Adding to the fun of the day for Nevan was his new found ability to use his right arm! The surgery to have his port inserted went extremely well and it took no time at all for Nevan to start gaining mobility back in that arm. The skin on his poor arm has a long way to go to be completely healed, but there is no dressing on it and he doesn't seem to be bothered by it. Currently it looks like he is healing from a severe burn, but with time, it will look normal again. Now we are working on gaining weight and taking meds orally and we can also get rid of the NG tube.
The morning of the Fundraiser, Nana and Nanima came over to watch the kids while Craig and I went over to set up with Grandma, Grandpa and the rest of our family and friends. The time passed so quicky and before we knew it, people were showing up to enjoy the days events. We rushed home to get the kids and as we drove up the first excitement trigger was the Bouncy Castle, set up eye-catchingly at the edge of the parking lot. We drove up with two smiling kids and those smiles did not waver for the entire 4 hours. Nevan and Nylah rode horses, jumped in the bouncy castle, helped themselves to burgers and hotdogs, danced to the music, ate spiderman cookies and sat in a Fire Truck. They had the time of their lives! Finally they were allowed to be normal kids for the first time in months and we got to watch it happen... None of us realized how much we missed it. Our worries of Nevan catching a cold or having a reaction to the sun faded instantly as he and Nylah smiled, laughed and danced the day away.
Craig and I enjoyed the day equally as much, but for different reasons (even though I did quite enjoy the bouncy castle!). We were awed and humbled over and over again as we met up with old friends and were introduced to so many new ones. Everyone was filled with so much love and support filled words for us. We were touched to learn that so many have come to know us by reading our blog. In a situation where it is so easy to feel desparate and alone, time and time again family, friends and strangers are coming together to remind us that alone should not even be part of our vocabulary. Up until this point, Craig and I were the ones to give. We used to give to charities on a regular basis and haven't once passed up a box of girl guide cookies or chocolate covered almonds brought to our front door. The humane society has gotten many cans of kitten food and our old belongings get donated rather than sold or tossed. We help in any way we can, when ever we can and have always been happy to do so.... but to now be on the other side of it is heart wrenching. I don't think the amount of appreciation we have for this help can even be measured. Sometimes we worry that we have trouble finding the words, but then we realize that there just are no words meaningful enough.
I think we have all learned many important lessons throughout this adventure, but I think the best one is that we all realize that truly 'No One Fights Alone".
Cute Story of the Day:
I just finished reading Nevan a bedtime story and was getting ready to tuck him in when Peanut came up on the bed.
Me: "Nevan, you know how old Peanut is?"
Nevan: "How old??"
Me: "He is almost 9 years old! I had him before I even met daddy!"
Nevan: "Was he in your tummy?"
Me (giggling): " No Nevan, a mommy cat"
Nevan: "You had a mommy cat in your tummy?!?!"
Me (laughing so hard): "No, No... a Mommy Cat had Peanut in her tummy. Mommy only had you and Nylah in her tummy"
Nevan: "Oh... no cats?"
Me: "No Nevan... No cats!"
Is 4 too young for the "birds and the bees" talk? ;)
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