Happy Thanksgiving!

I am thankful today to still have Emily here with us. I think about the families we know that have lost members to cancer and it makes me burn inside to bring awareness and a cure for all.

I am very thankful for having coworkers across five states that have donated to me vacation days, so I could be at all of Emily’s appointments. Emily has asked why other kids have to be alone while they fight cancer. I am also thankful for the family,friends, and THON members that constantly support us and help when we need it most. We have been blessed with some great doctors, scientists,nurses, and staff at the hospitals that are amazing at their jobs. We think of them as our hospital family. I am overwhelmed at how many great people support us and are part of Emma’s army. The prayers and well wishes sent have kept us fighting on. I am mostly honored and humbled just to be EMILY’S DAD. Emily has told both Kari and I lately that we are her heroes. I told her well we are very lucky, because all three of us get to live with and see our heroes every day.

HAPPY THANKSGIVING! WE BELIEVE!
~Tom

Recent Instagram Photos

Just sharing some photos. Most of these are from the past few weekends when we went to Ohio/Pittsburgh one weekend and Philadelphia the next weekend. Emily has been feeling OK and is still taking two antibiotics (one for c-diff and one for salmonella). If the infections persist after this round of antibiotics we aren’t sure what the plan will be. She will be on both antibiotics for another two weeks.

1: A stop at Panera on our way to Ohio (Emily loves their mac and cheese), I asked her smile nicely – this is typically the goofy look I get. 2: When daddy asks for a nice smile, she obliges. 3: Emily found a purple couch at the hotel that she wants for our living room and wants to purchase it for ours. 4: Emily with Uncle Tom and their electronic devices during our visit to Pittsburgh. 5: Emily loves to snuggle with Aunt Brenda and Uncle Tom’s two cats. 6: More cat love. 7: Future doctor/scientist? Dr. Grupp shows Emily living leukemia cells under the microscope. 8: Emily and Christine (she works with Dr. Grupp and is teaching Emily the best places to shop in Philly). 9: Emily wrote a special note to the doctors involved with the clinical trial, thanking them for her T-cells (she thought of this/wrote it totally on her own – she just asked for help spelling the doctor’s names). 10: The majority of time spent on our long car rides is spent listening to music and sleeping. 11: Halloween – Lydia the vampire kitty. 12: Emily bought a Thank You card for Tom and I just the other day, which says: Thank you for taking care of me in the hospital and when you get sick I will take care of you. 

 

WTF (What The Fudge)?!

I should know by now not to post how great things are going because it seems like almost every time I do my next post says “we are in the ER again…”. We had to make an early morning trip to the ER Sunday because Emily’s symptoms returned – abdominal pain, nausea, vomiting, diarrhea and fever. We felt certain it was salmonella again. After being on an antibiotic for a month for salmonella she had just taken the last dose on Friday. It seemed a little quick that the symptoms had returned only 36 hours after stopping the medicine. We got to the ER and went through the usual – port accessed, blood cultures drawn (from her port AND one from her arm which she wasn’t happy about), labs, fluids, nausea meds, pain meds, stool sample, IV antibiotic. Then we found out she tested positive for C-Diff. WTF?! Seriously. Tom and I just look at each other sometimes and say W…T…F. (By the way, Emily thinks WTF stands for What The Fudge?! 😯 ).  She has had C-Diff once before in 2011 when she was still on chemo. C-Diff is a “bad” bacteria that grows when the “good” bacteria is depleted from your colon (such as when you are taking antibiotics for a long period of time – which Emily was). The “good” bacteria can usually control the overgrowth of “bad” bacteria such as C-Diff. C-Diff is treated with another antibiotic but can be difficult to treat, especially in those with a suppressed immune system. We felt certain she was in for a hospital stay, but a few hours later she was feeling better and was discharged. She slept most of the afternoon and by evening was up playing and eating Pappy Rob’s lasagna.

Sunday is the day we give Emily her SCIG infusion (sub-cutaneous immunoglobulins). Emily dreads it and gets very upset when it’s time to give it to her. We hook everything up, put the needle into her belly (it is a small needle and we numb the area so she doesn’t even feel it), turn the pump on and…nothing. The medicine will not go through the tubing. After an hour of trying to figure out what was wrong we finally gave up. The tubing was defective and would not let the medicine go through. We had to take the needle out and scrap the whole thing and we didn’t have any more supplies or medicine – another dose was scheduled to be delivered on Tuesday. It’s not necessary for her to get the medicine on exactly the same day every week, so it wasn’t a huge deal that she missed it, but it’s just another day she has to be stressed about getting stuck with a needle.

The supplies and medicine came yesterday, we open them up, and they sent the wrong needles (another WTF). Emily gets her SCIG using one needle and we were sent supplies for using two needles. At this point we didn’t want to wait for more supplies, so we told Emily we would have to do the infusion anyway and use two needles. We had to stick her twice, she was very upset, but we got through it and the SCIG is done for this week. She cries during it and says “when will all of this be over with?”  We have to explain that it is something she will do until she’s much older.

Then this morning we received a call that the salmonella also grew in her culture from Sunday. AGAIN. What the fudge is going on?! Her doctors are trying to come up with a plan. We know she will be on antibiotics again in some form which we are worried will cause a vicious cycle of killing good bacteria, letting bad bacteria grow, etc. etc. It is so frustrating. Yet, in comparison to what we have been through before, we know this is something that we can get through. It doesn’t make it any less stressful or frustrating though. Especially for Emily who is tired of not feeling well, visiting the ER, taking pills 4x/day and getting stuck with more needles. She asked me the other day “I thought you told me I was done with all of this?”.

At least for now, she’s feeling OK. Hopefully she will get started on an antibiotic later today before the salmonella gets out of control again. It’s possible there could be a hospital stay if they decide to do IV antibiotics. All we want is for Emily to feel better and to spend Thanksgiving at home with our families.

(We have received many messages about having Emily take probiotics and to eat a lot of yogurt. She actually has been taking Culturelle (which was recommended at CHOP) since she started on the month long antibiotic to help add some good bacteria back into her GI tract.)

~Kari