Engraftment!

Last Tuesday we had a fairly routine appointment. We got set up to draw her blood and they had three tubes on the desk. I asked if they were pulling her engraftment studies today. We had to wait for almost 15 minutes for them to track down Ellen to ask. But sure enough the nurse came back with a whole stack of new orders. They pulled out 9 vials. Yikes! Oh but wait, Selene is amazing and sat there while he filled them all. She kept asking Mr. Pete to move so she could see Sesame Street over his shoulder.

We had another round of crying for cake while waiting for Dr. Olson. I still have no idea why this became a "thing." But I can't blame her.

In any case, everything at the appointment was fine and we just had to wait for all of the results.  This afternoon I got an email from Ellen saying that all of her cell lines came back at 100%!! That means that all of the cells circulating in Selene's blood originated from Ainsley.

Her B cells and IgG were both in the normal range and while her T cells are still a little low this is all good news. From my understanding T cells take the longest to come back, so that should continue to go up.

Her liver numbers were half what they had been, down to 250 from 500. But the top of normal is 50, so we still have a long way to go. At this point we are staying the course with the monthly antibiotic.  

We've been venturing out a little bit but we've become a little more cautious again after our sleepover.  That being said we were given the ok to spend a long weekend at the shore at the end of September! They said the 6 month mark loosens some restrictions and since we'll be staying a house owned by family and not swimming that it is fine. I'm so excited!

Other than that we are enjoying the summer, though spending way more time hiding from 95 degree days than I'd like. Kalina is growing and proving to be the most amazing little addition to our family. 

Also, a friend of mine through the Neutropenia group has just started her son's transplant at MOTT. They had to move into an apartment in Michigan to be near the hospital and will remain there for months after he is released for the follow up care. Today was day two of chemotherapy. Obviously your prayers helped Selene soar through so send them up for this brave and strong boy! 

Much love!

Would you expect anything else?

Dr. Selene

  

                                        

                                                      I cried when I looked at this list of 100%!

Freebird

Pug love

10 weeks!

Clinic last week!

Giving her pug stickers

2 months

Strong!

cooling off

"Look at my married dress!"

 

"I had fun today!"

No joke, those were the words Selene said to me as we drove out of the hospital parking garage. Who is this kid??

I was really hoping we were going to have a clean record. No fevers, no hospital stays, just a kid defying the odds and rocking transplant.

I'm not going to lie, it's a little overwhelming to see a fever pop up (102.9) where you would normally give some tylenol and put your child to bed and everything would probably be fine. Or maybe you head in to see your pediatrician for an ear check. But nope, panic immediately sets in and you fumble through dialing the Oncology Clinic Nurse line, a number you memorized AND put in your phone for such occasions but then blank on when your heart starts racing.

When the nurse answered and I said "This is Jennifer Bell and my post transplant child has a fever." She replied "Oh no! Is it Selene!? This is Colleen." What a relief to know the person on the other line, we see her weekly/biweekly in clinic. She has the best teal watch that always matches her pretty teal nails. And of course she said what I was expecting, you need to come in and pack a bag, you'll be admitted.

The house was a mess and I was just about to start dinner. I dashed around getting the girls ready and packing bags for Selene and Dan. We were going to meet in Oreland for a hand off.

As soon as I dropped her with Daddy and got back in my car I burst into tears. The wave of adrenaline was gone and emotion took over. Ainsley was confused and asked why I was crying. It's so hard explaining truthfully without scaring her.

When we got home I had told her we would clean up together and then she could have a treat and then we'd go to bed. After battling her about cleaning (our constant daily battle), she lost it. I was so frustrated and angry that she was being difficult when I had so much to do. Then she screamed "I want Selene!" It broke my heart that I didn't realize she was also scared.

After I got her to sleep I ran around preparing milk for the baby, cleaning up and leaving information for the next day. I guess a blessing to Kalina taking a bottle (ok, only bottles, we still haven't gotten that fixed yet) is I didn't have to worry at all about her. I have a couple hundred ounces in the freezer and the fridge was full of fresh milk. A huge relief compared to having to leave the first two girls when they were little.

The next morning Nana came up to stay with the girls and after driving through Starbucks, I made my way down. I almost burst into tears as I walked into the Bone Marrow Transplant unit. It was home only for 5 weeks but it will always be a huge part of our lives.

It was nice to be there with no masks or diet and food restrictions. I was so excited for a full menu! Until I kept trying to order her food that they don't give to her age range. No fajitas, no salad, no stirfry...just cheeseburgers and chicken fingers. What the heck do they think 2.5 year olds eat?! Thank goodness it was just one day, I couldn't go back to the unhealthy food with no options.

She of course was amazing, other than some crankiness from lack of sleep and a little boredom. They put us on precautions since she had a cold last week and a fever. She kept asking to go ride in the car, but we can't get all those other precious kiddos sick!

On the bright side we got to see some of our favorite nurses! She was so happy when Deb came in to visit.

Selene napped from 4:30-7 and woke up starving. So while she gobbled up some spaghetti the nurse prepared our paper work. Selene packed up her "Punzle" backback and kept asking to go home. She was singing a song about loving her sisters. She makes me swoon sometimes.

It was quite the experience, but one I hope not to repeat. Our next visit to the BMT unit better be after a clinic appointment!

Thank you for all of the prayers! She's doing well today, no fever, and eating and playing up a storm.  Now if only she and Ainsley would nap!!

Coloring

She kept telling me "I have one hand, and this!" Holding up her IV arm.

Fun glowing snowflakes from Chris!

She was reading the menu for lunch, all of which she isn't allowed to have. Apparently they don't realize 2 year olds have a mouth full of teeth?

This was sweet relief, when coloring Miss Kitty the wrong color ends up with a 5 minute cry fest, it's nap time.

Happy girls picnicking at home with Nana!

Sweet girl

Eating left handed is hard!

So excited to go home!

Ainsley's present for Selene! (it's not Tieks, she just kept my box and keeps putting "presents" in it)

Love to all!

Finally didn't beat the odds at something!

Kalina was cleared this week!  We had her tested while at Selene's routine appointment and her neutrophils were normal. Of course nothing can ever be easy and he said her eosinophils, which are related to allergies, were high but that's a non issue right now and he said since they don't handle a lot of 7 week olds that could be something that might fluctuate and not be a sign of anything wrong.

Kalina was also a champ when giving blood. I was really nervous. I'm a fairly tough Mom who does what I need to do to take care of my kids, but taking blood from a 7 week old's arm had me a little teary. But once again CHOP proves they are amazing. They hit her vein and had the blood out in 20 seconds. No tears from me and the second I pulled Kalina up to my chest she was done crying. On the other bright side I've been eager to know what she weighs, 11.5 lbs! Up 2 lbs in the last month.

Selene was in rare form and while usually a delight she spent the entire time that Dr. Olson was with us screaming for cake. I have no idea where that came from, we never have cake and certainly not down at the hospital. Oh two year olds.

I will say they totally messed up the flow of our appointment. They weren't sure whether they wanted Selene to have another course of IV antibiotics so they were going to make us wait to be seen. But after we waited awhile they decided we would get the IV, so the nurse did it then made us wait to see Dr. Olson in a room instead of sending us to the day hospital, getting the IV started, and having him see us there. So it ended up being a super long day. Thank goodness for tv, comfy chairs and a giant muffin that Nana found in the cafeteria (as well as all the snacks they provide in the Day hospital :-) ).

Her counts looked great, her ANC was 3770, the highest it's ever been. And her white count is going up too, which hopefully means T cells (antibodies!) are finally being produced.  Her liver numbers were down a smidge but still way high (in the 500s when normal is below 50). So we are still keeping an eye on that and thus need to go back in two weeks. At that point they will also run the 4 month testing.  Hopefully everything will look amazing and we can go to every month.

Aside from hospital life, real life has been lots of fun!

I took Ainsley and Kalina to my brother's where my whole family gathered for the fourth of July. And Dan took Selene to Nana's for her first sleepover since February!

The awesome Super Ainsley outfit from a dear friend!

Her super girl pose! Can't wait to get them in their outfits side by side!

Aunt Merlann surrounded by her great nieces and nephew!

And pre fourth of July sleepover! Selene was super excited to go, she got all packed up!  The fact that she can now visit Nana's house has been huge for her :-)

And since the fourth is one of my favorite days, we went to the park on Friday before all splitting up.  Ainsley is obsessed with catching butterflies so she raced around the fields after we managed a few family photos. It's not the same as my brother taking them on the beach at sunset, but they'll do for this year!

Selene is trying to make her shoulder look like Ainsley's ;-)

Sisters <3