Kate is having a bone marrow biopsy today. Apparently this is routine and her doctors want to check her actual marrow against her blood counts. They will also run an engraftment study on her marrow to make sure the blood tests have been accurate. I am so nervous about Kate leaving the unit for the first time. Hospitals are filled with germy kids as is the day surgery unit. I'm praying she doesn't catch anything and get sick while venturing off the 8th floor.
We spend the weekend working in oral medication and Kate is finally doing great!
I'm sure my new readers won't remember but Kate struggled with several GI issues as a newborn. One of her issues was delayed gastric emptying.
After days of excessive vomiting, Kate's doctors and I put our heads together and tried to figure out what was causing the stomach issues. We all came to the conclusion that her delayed gastric emptying could be "acting up" again since her stomach hasn't had anything in it in such a long time. We started the same medication that was successful almost a year ago and have seen a huge improvement in regards to the vomiting and stomach issues! Kate is even taking 6-8 ounces of fluids by mouth daily!
Since Kate is mastering the oral meds, she was able to enjoy some time away from her IV pole this weekend! She spent about 8 hours free of her lines and enjoyed every minute of her freedom!
We are getting so close to going home! I am so ready to be done with the hospital so we start reestablishing some type of schedule/ routine with Kate! I'm also hoping that routine and home help Kate with eating. She will come home on TPN as she has no interest in eating at all.
Well, they are all amazing and positive and just what we've needed to hear!
So, let me explain...
Last week we sent off a blood test to determine what percentage of donor cells were occupying Kate's body. Well, the results came back and we are so excited that 99.2% of Kate's cells are from her amazing donor! Kate's team of doctors believe that she will reach 100% when she finally engrafts.
Speaking of engraftment, Kate's ANC was 2,420 today!!! I was absolutely shocked when I got her lab work. I didn't expect such a huge jump. It was 450 yesterday so today starts the count to engraftment!
If Kate's ANC stays above 500 for two more days, she will be officially engrafted by Thursday!
We are stopping the cell boosting medication (GCSF) and expect to see a significant drop in her ANC since her body will be doing all of the work. But, Kate's numbers are high enough that it would take a pretty drastic fall for her to drop below 500!
To say we are excited about such positive news is an understatement.
Alex and I are feeling extremely blessed to have some wonderful evidence that this process, this long, stressful, hard process is curing our sweet daughter!
God is good! Thank you so much for your thoughts and prayers that have carried us to this point. We still have a long road ahead of us and Kate has many, many months, possibly years, until she is able to function like a normal child, but we are one huge step closer to living life like a regular family with a healthy baby girl!
This process is such a roller coaster. Good days. Bad days. Good hours. Bad hours. Ups. Downs.
It is exhausting.
I feel like the second we receive positive news, we are bombarded with triple the amount of bad/negative news.
On top of all of the ups and downs, I am currently caught in the horrible hell known as comparing. Comparing Kate against other BMT kids. Comparing Kate against other kids in the unit, that had transplants after her. Comparing Kate to BMT stories on the Internet.
I need to stop. Every time I compare, the only realization I come it is that Kate is on the slow end of things. She will not be someone that goes home by day 25. Hell, she might not even be home by day 35.
The exciting news of Kate's increasing ANC was instantly shattered by more issues with her line due to the incompetent nurse. Then her ANC plummeted yet again.
Over the past several days, Kate's line has been repaired (which involved cutting the line and patching it due to the clot never dissolving properly), she's started an ANC booster medication because she can't seem to increase her counts on her own, we've started continuous lasix as well as other diuretics because she can't pee, she's dealing with breathing/ oxygen saturation issues due to excessive fluid, and she is back down to a low ANC.
One step forward. A million steps back.
I'm just ready to know this transplant worked and that Kate is actually getting better.
We had a very stressful day yesterday. A brief overview:
Platelets, blood transfusion, incompetent nurse that didn't flush Kate's lines post blood transfusion, clotted central line, furious momma, miracle in room 47 that lead to central line becoming partially unclotted, new intelligent nurse, more platelets, fussy baby, long night.
But, everything about yesterday was erased when we found out about Kate's ANC this morning!
It is 100 (or 0.10 same thing)!!!!
We obviously still have a long road ahead and need to see consistent increases but, at this point, any increase in her counts is a huge victory in my eyes!!
So, prayers that Kate's counts continue to increase! We are ready to bust out of the hospital but need to be engrafted first!
The past 4 days have been HARD. Kate tested positive for a virus and was placed back on isolation. It is nearly impossible to keep her occupied/entertained in her room. She wants to walk the halls and see people!
We've also been battling extremely low platelets and a shortage of Kate's specific platelet needs at the blood bank. Due to the shortage, Kate was unable to receive platelets Thursday which resulted in her levels completely tanking. We've been playing catch up since then which has led to daily platelet transfusions this week. Kate is covered in bruises - deep, dark bruises. We've been very careful to avoid falls/ tripping but, the littlest things cause bruising since her levels are nonexistent. Simple things like leaning over her toy bucket to pick something out results in deep bruises.
Kate's morphine has been upped yet again due to signs of discomfort. It seems to be helping as she is finally napping now after a marathon day yesterday that consisted of 12 straight hours of awake time. Thank goodness it was Sunday as Alex and I were able to deal with Kate together!
Today has been another stressful day.
Kate's ANC is still zero, her platelets were 5 before receiving a transfusion, and she spiked a fever. We still have no signs of engraftment.
There is some talk in the BMT community that fever, illness, and an overall blah feeling can be a reaction to the body ramping up for engraftment. But, it could also mean Kate is just sick because her counts are so low.
I'm trying to stay positive but, if I'm being totally honest, it's getting harder and harder every day. I never expected Kate's ANC to still be sitting at zero on day +12. I thought we would have seen some upward movement by now. Maybe my expectations were unrealistic but, I'm feeling defeated by her counts.
I know I need to trust in God's plan, keep the faith, and stop worrying. But, that is so hard to do as I sit and watch Kate feel so miserable.
I cannot believe we are a week post transplant! The days seem so very slow but the weeks are flying by!
If y'all remember, Kate's friend Caleb went home on Day +20. That means Kate could be home in as little as two weeks. We aren't getting are hopes up but, it's nice knowing we are making progress towards discharge.
Kate has had three very good days in a row! I think it is a combination of her starting to feel better and the fact that we finally have her pain under control. Whatever it is, we are happy to see glimpses of our old Kate filling the halls of Texas Children's!
Kate spends the majority of her days walking the halls of the BMT unit, begging random people to pick her up (she seriously has no stranger anxiety at all - we will have to work on this as she gets older), and playing in the play room! Her endurance is building back up and she is literally running in the halls these days!
Counts still remain low (her ANC is at 0.02) and Kate continues to eat through platelets like crazy (she's getting platelet transfusions every other day) but she is on the road to recovery!
Our next goal is to have her ANC start increasing. Engraftment (defined as an ANC >500 for 3 consecutive days) doesn't normally occur until 2-4 weeks post transplant which means we should see small increases in her levels soon.
I know I sound like a broken record but, thank you so much for your thoughts and prayers! They are working!!
For those who have asked for specific prayer requests, I have two right now! The first is prayers for engrafting and signs of Kate's ANC increasing.
The second is that Kate engrafts at 100% donor cells. CAMT (Kate's genetic condition) comes with a very high risk of leukemia. If any of Kate's cells remain in her body, she will be at risk for developing leukemia. We need Kate to be filled with 100% of her donors cells so that we can eliminate this risk. We won't know engraftment percentages until something like 30 days past transplant when her first engraftment study is done. So all prayers in regards to this are much appreciated!!
A random side note. You may notice that Kate looks tan in the picture above. Your eyes are not fooling you! One of the side effects of the first chemo drug Kate was on is temporary changes in skin pigmentation. So despite not seeing the sun for over 3 weeks, Kate is sporting a nice busulfan tan!
I feel so bad that I haven't updated in so long but things have been busy.
Kate has officially been diagnosed with mucositis. The majority of BMT patients have mucositis to some degree so we are not shocked by this at all. Kate was on such an intense chemo regimen that it would be nearly impossible to avoid it.
Basically, mucositis is the inflammation and breakdown if the cells lining the GI tract. This means Kate's mouth is swollen and starting to develop lots of painful sores as are the rest of her GI organs. Currently, the underpart of Kate's tongue is completely raw and the insides of her cheeks are so swollen (which is causing her to bite them and create more sores). She also has pretty bad diarrhea and the skin on her bottom is breaking down as well.
The doctors decided to start her on a continuous morphine drip today after a really hard night last night. Kate's body is producing tons of thick mucous/ saliva as a defense mechanism to the sores. The mucous pools in her mouth/throat causing her to cough, choke, gag, and vomit. Since she isn't eating (due to the pain and some lingering nausea from chemo) her vomit is very acidic and extremely painful given the open sores in her mouth.
We've notice an improvement in her demeanor with the increased morphine dose and have the ability to push a button to send an extra bolus of meds before diaper changes and after vomiting.
Typically, mucositis is at its worst on days 8-10 post transplant and then gradually gets better. It totally relates to her white blood cell and ANC counts. The lower the number, the worse the symptoms. Kate's WBC and ANC are at zero now and it will be several days/weeks before they start to increase.
Another sad (but expected) thing is Kate's hair. She is starting to get bald spots and I would expect she loses it all by Monday. I honestly think the anticipation of it falling out will be harder than the day most of it comes out.
On a positive note, Kate is walking again! It makes me so happy to watch her walk all over the unit! I think she is trying to fill Caleb's shoes as the unit socialite since he was discharged Thursday! She's also taken a liking to being pushed around on a pink bike. Caleb was always riding a bike in the unit so I'm guessing Kate is trying to be just like him!
Hopefully I will catch up on pictures soon! I have a few cute ones from this week/weekend.
Alex and I continue to be amazed by the support our family is receiving. We are so blessed to have so many people thinking about and praying for Kate!