Back to Treatment

We just finished up a glorious 2 weeks at home with Asher. It didn’t take long for him to adjust to being out of the hospital. He likes sleeping in his own bed and loves being able to play with Charlotte whenever he wants. I think he misses being able to order whatever food he is craving any time of the day. Some of his new favorite snacks include string cheese, large green olives and cottage cheese. I guess the chemo is really making him crave salty foods. He ate a plain waffle and 3 olives for breakfast a few mornings ago. Sound yummy to anyone else?

Dave and I became proficient at flushing his PICC line twice a day and the home care nurses visited regularly for various reasons, but other than that we relaxed as much as possible. We put up the Christmas tree and Freddie the elf is back in action. Oh, and we were able to find out as a family that our newest edition will be another little girl. Yay for Felicity Grace <3

We arrived back at Children’s this morning for a clinic visit, surgery to place a port, and more chemo. Blech, it’s been a long day but Asher did really well. He wasn’t allowed to eat until after surgery, which ended up starting at 3:50pm. Keeping him distracted was easy until about 1pm. By 2:30 he fell asleep on my lap and stayed out until they were ready to take him in – thank goodness! So, instead of having something dangling out of him arm that can’t get wet he has a small port that looks like a lump on the right side of his chest. As long as they aren’t “plugged in” and using the port he can get baths and go swimming because it is totally covered by skin. It’s kind of weird, but a good alternative for the long term. Again we were told that he would be sore when he woke up…and nothing. He must seriously have high pain tolerance because he hasn’t needed pain meds. He said “what’s this?” and pointed to it. We told him it was a new spot to get medicine and pointed out that his PICC was gone. He said “okay, can I watch Bubble Guppies?” Ha. He also impressed all of the nurses by swallowing his first oral dose of chemo in pill form. We had practiced swallowing whole M&Ms with the child life specialists during our last inpatient stay and he did well so we gave the pill a try tonight (knowing that the liquid tastes really bad). He put in in his mouth and grabbed his Gatorade and just swallowed. Everyone jumped and cheered and gave him high fives…and he looked at us like we were nuts. He must have been thinking “Are you kidding me? That wasn’t hard.” Anyhow, looks like pill swallowing will not be an issue.

It’s midnight and we just finished chemo and he is finally settling down to sleep. I am so very happy we go home tomorrow. One night doesn’t seem too bad.



A little fun in the snow

It's another girl!!

Rockin' his new port and some chocolate pudding

Home!!

We’re home!!! Asher was had a lumbar puncture and bone marrow aspirate performed yesterday morning. The results look great as expected. After a visit from the home health nurse, a pharmacist and his care manager we were FINALLY released around 4:30pm. We arrived home to a beautifully decorated yard and Mr. Redlegs. Asher was very excited to be home and then quickly became shy.

We had a great first night home as a family! Thank you for all of the continued support <3

All dressed and waiting to break out.

Happy Thanksgiving

Today we are thankful for a 4 hour pass to go home and enjoy our Thanksgiving meal!!! Asher’s ANC numbers stayed above 200 which allowed out to break out for the afternoon.

We enjoyed a delicious home cooked dinner, thanks to our friend Mary. All of it was so yummy.

Sparkling grape juice

A favorite in our house, A Charlie Brown Thanksgiving (couldn't find the DVD, so we resorted to YouTube)

Charlotte and Asher's favorite thing...watching Daddy play Mario Brothers. Serioulsy, I don't know why they find it so amusing.

And finally a little fun in the snow <3

Yup, I'd say we have a lot to be thankful for.

Update, mostly pictures!

Nothing big to report except Charlotte likes to rub Asher’s newly trimmed hair. Also, Asher got his last dose of chemo for this stay! I thought he would be tired today because of the treatment yesterday…not so much. He went strong all day. He was even unhooked from his fluids so he was free to run around without the worry of being tangled or tripped.

Happy Thanksgiving!!!

Giving his head a little rub <3

Last chemo (for now)

Wild man, playing with Daddy today

Haircut Day

The countdown begins, 8 days until discharge (unless we have a setback)!!! On Monday December 2nd Asher will get another lumbar puncture and some chemo in his spinal fluid and then we will go home. Dave and I can’t wait and I know he and Charlotte will be thrilled.

I am happy to report that Asher’s ANC count began to rise the very next day after it fell to 320. Yesterday was 520 and today is 780. Woot! It’s still below normal but we are thrilled that it didn’t bottom out.

In other news, Asher’s hair began to fall out last night. Not a lot, just some stray hairs here and there. I had already planned on trimming up his wild mop but we went with a super short buzz cut this morning. He didn’t much mind because this past summer I would put him out on the back deck and buzz his hair regularly. He even pretended to help me with the clippers once I was done. The nurse brought in a bag to save some of his locks to be placed under his pillow tonight. The tooth fairy’s cousin, Miss Hair Fairy, will be visiting. Let’s hope Asher doesn’t think the Hair Fairy will start visiting after every haircut, hehe.

Before

Half way there!

Helping out

Such a stud. You can tell he has Dave's eyebrows in this shot <3

Writing his name on the bag of hair so the Hair Fairy knows who to give a gift to.

Smiley Asher

Today is day 22 of induction chemotherapy. Asher continues to tolerate the treatment well. Two days ago he receieved an antibody transfusion to build his immune system for fighting viruses. He was given Tylenol and Benadryl before the infusion started because there was a good chance that he would have a reaction. The nurses watched closely for trouble breathing, fever, hives and chills. Of course the little guy breezed right through it with no trouble at all. It is scary when the medical staff feels the need to be so close by, but they always assure us that they can handle any reaction with ease. I am just happy that treatment is over.

His ANC numbers have finally started dropping. It is an expected side effect of the chemo but Asher’s numbers stayed high for so long it was kind of a bummer to see them drop. The numbers are checked daily and his went from 3,500 to 950 to 510 and this morning they are 320. Anything under 500 is considered “neutropenic” and means he is at a high risk for getting sick with an infection/fever. I will know more about what this means after the doctors round this morning. I assume there will be more restrictions on where he can go, so we’ll see if he is still allowed in the playroom. His numbers could go to zero before rebounding, eeek. We would appreciate some prayers that they start rising again ASAP.

We are more than half way through this stay and looking forward to our estimated discharge date of December 2nd!!!

A much happier Asher post steroids.

Biking riding for OT/PT (the only way we can get him to wear clothes)