6.29.2012

Overwhelmed

Two reasons for the title of this post...


First, the golf outing for Becca this past Sunday at Shaker Run Golf Club was terrific!  Beautiful weather, a great turnout, and so much fun... how could we ask for more?  A mountain of thanks to all of the wonderful people and companies who provided prizes for the auction, contributed their own time to work at the event in various capacities, paid registration fees to golf or to attend the dinner, and even donated extra funds to aid our family.  We are, yet again, so touched by the generosity of so many individuals, and amazed at how blessed we are to have such a fabulous support system.  Thank you!

Second, we met with the bone marrow doctor (Dr. Grimley) on Monday to sign "consents" and have some of our questions about Becca's upcoming bone marrow transplant process answered.  Honestly, I didn't have too many questions ready, because our care coordinator had answered most of my questions last week.  As Dr. Grimley started giving us some of the specifics of what is going to happen in mid-July, though, I suddenly found it hard to breathe.  My baby, who is not even six years old yet, is going to be put on loads of meds, some of which she might be on for a year, some maybe for life.  She will get extremely sick pretty quickly, and this is intentional and expected.  This is to kill her marrow.  Unfortunately, killing her marrow also takes away her body's immune system, so she can contract a viral infection, bacterial infection, or fungal infection much more easily.  Becca will be given rabbit or horse serum to prevent GVHD (graft versus host disease - when the donor's marrow attacks the "host's" body), which will lower her immunity even more.  She will have fevers.  The doctors will do scopes (of both ends) to find the source of the fevers.  She may end up on dialysis, as many kids do (some temporarily, and some longer term) and her kidneys are already struggling.  She will be admitted for neutropenia or fevers after she goes home post-BMT.  She could end up in the ICU again for a variety of reasons.  She will be given an anti-seizure medication.  An endocrinologist will be following Becca closely because she will develop hormone-related issues.  She will have mucositis which will make it painful to eat and drink, so she will probably end up with a feeding tube in her nose.  She might be able to return to school six months post-transplant, but wait... that's in the middle of cold/flu season... no, maybe after spring break.  When is she going to have the chance to develop relationships with friends and have a "normal" life?!  Many more details were shared, and rather than scare you with the nitty gritty, let's just leave it at the fact that we are overwhelmed...  

On a positive note, our family friend Katie Dickert is a senior at Mt. Notre Dame High School (my alma mater, by the way). As seniors, the girls were asked to take on a leadership role in their community. To honor Becca, Katie decided to make pillowcases for the children and teens at Cincinnati Children’s Hospital Medical Center (CCHMC). Her project is called Pillows of Hope, and her goal is to see that each child and teen receives a pillowcase of his/her own to bring comfort and hope. As she collects them, Katie will take them down to CCHMC to distribute. She is in the process of getting permission for Becca to be able to pass some out to the children in her area. Katie is asking for people to sew and donate homemade pillowcases, donate 100% cotton fabric, or be a sponsor by donating $7.00 per pillowcase.  You can find more information at www.facebook.com/pillowsofhope. Please think about helping! You can make a difference and brighten a child’s day. The more people that go to her page and “like” it then add it to their page, the better chance she has of reaching others to help her.   


Please continue the prayers for our brave little Becca, but I also humbly request that you add in some prayers of strength for the rest of our family... we can really use them.
TK

6.23.2012

Home again, home again!

The biggest news is that we are all home!

To catch you up...

Last Monday, while finally fever-free, Becca's ANC went up to 10.  Though that isn't a lot, when it has been zero for several weeks, we got pretty excited.  Traditionally, when her counts have started coming in, they have taken off like a rocket... needless to say, we were expecting that again.  Tuesday, her ANC went up to 200, but then it dropped to 80 on Wednesday.  We were quite crestfallen, as we wanted to get out of the hospital on Thursday.  Luckily on Thursday, she hit 320, and Friday, she was at 620, so we were able to head home.

In more ways than just her counts, it was an up and down kind of a week.  Becca was still confined to her hospital room for the first part of the week, as some of her test results were pending, but once she was able to leave her room, she went everywhere possible... PT, OT, the cafeteria and gift shop, the kitchen to get ice/food, and the playroom.  After being imprisoned for a week due to fevers, she had severe cabin fever. We are worried that Becca's upcoming extended stay in the bone marrow transplant (BMT) unit is going to be quite a challenge, as she will not be able to leave her room for over a month.  Now that she's had a taste of what is "out there," she doesn't want to go back.  While still inpatient and waiting for Becca's counts to come in, we wanted to take care of as many of the tests that are needed pre-BMT before we were discharged so that we wouldn't need to come back during our hiatus.  The pre-BMT tests she completed last week included an EKG, echocardiogram, GFR (poke in the hand with radioactive dye injected, then labs drawn every 30 minutes for two hours to measure her kidney function), a chest x-ray, and some special lab draws.  Thanks again to those of you who provided bribes - many were used last week!  

Speaking of the bone marrow transplant, we were able to talk more with our wonderful BMT care coordinator Sarah this past week, and she had some more info and dates for us.  From all of the perfect HLA matches and KIR mismatches they found, several "prime cut" matches have been lined up for Becca, and the docs are quite pleased about this.  Sarah described these prime cut matches as young men or women who haven't had children yet, so their bone marrow isn't as old or crotchety, and it isn't resistant about moving into a new "home."  The metaphors that the bone marrow people frequently use is pretty humorous, but it helps us to make sense out of some things we never thought we would need to understand.

The tentative plan is that Becca will be admitted to the BMT unit on July 16, and her course of really mean chemo will begin that day.  The time when she is receiving chemo is likened to tilling the ground and preparing the soil, in that the chemo will actually kill all of her current bone marrow in preparation for the donor's marrow.  This will be followed by one day of rest, then the stem cell infusion (planting the seeds that will grow) will take place on July 26.  We have heard that the infusion itself is pretty anti-climatic... it just looks like a blood transfusion for Becca (not a painful surgery).  The stem cells are very smart, and they know to go to the large cavities of her bones and start growing.  The next four to eight weeks (engraftment) will be a waiting game when the docs keep a close eye on how the marrow is doing to see if it is resuming its job of producing normal blood cells.  Becca's body will be really susceptible to bleeding and infection during this time, as her immune system has been crippled by the chemotherapy.  She will likely be receiving lots of antibiotics to prevent infection, platelets to prevent bleeding, and medications to control graft-versus-host-disease.  As you can understand, we will really limit visitors during this time.      

On Monday, Ethan and I will head to Children's to sign "consents" with Dr. Grimley, who is our new BMT doctor (we know, it's a very unfortunate name).  Becca will have a lumbar puncture and bone marrow aspiration on Wednesday morning, as well as a full body CT (face, head, neck, chest, and pelvis) with contrast (peripheral IV required) in the afternoon.  Thursday, we will go to the day hospital for a Busulfan PK study, which is a 10-hour long test where she receives a tiny dose of the chemo she will receive pre-BMT, and then they draw labs every half hour to see how her body metabolizes it.  Becca didn't score well on the GFR she did on Thursday last week, meaning that her kidneys aren't happy.  She is currently receiving fluids at night while we are at home, so hopefully her kidneys will bounce back.  The doctors wanted to repeat the GFR this week, but since we are already heading to the hospital three days on our "break," we asked if the repeat test could be done the week before we come back instead.

The plan is to go north to the UP on Friday, 6/29, for a week to ten days of fresh air, nature, and time away from the hospital.  Becca has been dying to go, as have the rest of us, and it has been the light in the middle of the tunnel that we have been moving toward these last few weeks.  We hope to recharge our batteries in preparation for what lies ahead in mid-July.  

Until then, we are just enjoying all four of us being together under the same roof.  Many of you probably take that for granted, but I tell you, I never will again...
TK

6.16.2012

FEVER! in the Mornin

Fevers are not a good thing any time, more so when you have no immunity and are surrounded by folks that like to order tests. We had one nasty night when the fevers started, Becca's oxygen saturation dropped, as did her blood pressure. It was far too similar to when we were sent to the ICU in April. Since that night last week, we have been increasingly stable but still spiking some fevers. Becca has gotten an X-ray and a partial CT (aka by Becca as the "doughnut test"), there is currently talk of an ultra-sound ("slimey test"), and a potential broncoscopy (no cute names; we just don't talk about it). The "bronc" has been sidelined by her current attending, but the attendings change on Monday. Next week's attending doc is a brilliant man who is also known for ordering an avalanche of tests and procedures. If he asks for one, we will be insistent that he defends the decision to our satisfaction that it is diagnostically necessary before we allow it. The last bronc Becca got was one of the factors in her ending up in the ICU.///

There are still many slots available in Becca's golf outing next Sunday at Shaker Run Golf Club. Non golfers are also encouraged to come out during the day and to join us for dinner. Golfers need to call the Professional Shop to make a reservation at 513.727.0007. You may even have a chance to meet Glen Barber of Shirley Temple fame.

P.S. Photo shoot at the hospital today, so Becca was able to leave her room for the first time in six days, and she loved it.  Though not a "professional" pic from the session, thought you'd enjoy this amateur shot of the girls...


6.10.2012

Blood products...

 Becca's new friend Elizabeth made the trip back to the hospital a little better!

 Sisters enjoying playtime together - don't you love the bee hat?!

 Becca and I found a cool courtyard outside on a morning excursion Saturday.  
So nice to get fresh air...

Another little courtyard with huge statues of Alvin, Simon, and Becca's favorite, Theodore


Not much to report tonight except that Becca's counts have fallen, so now it's a waiting game to see when they will rebound.  She is finished with chemo until next month when we come in for the bone marrow transplant.  Becca received packed red blood cells yesterday, since her hemoglobin was low, and platelets today.  They were planning on waiting to give platelets until she went a bit lower, but she ended up with a pretty massive nosebleed today.  Let me just say that the weekend was a bit traumatic for Becca.  She doesn't like the word "blood," doesn't like to see blood or blood products (especially going into or out of her body), she thinks platelets are chemo that makes her bones hurt, and she feels ill looking at where her central line goes into her body.  Our weekend revolved around all of those things.  She needed a dressing change Friday night, blood transfusion on Saturday, and platelets on Sunday due to low platelet count and nosebleed.  As a bonus, when Lily was there with us tonight, Becca vomited as a result of taking a really gross medication, and Lily has trouble handling it when Becca throws up.  She jumped up from Becca's bed quick as a flash and ran to the corner of the room behind the recliner, crying until Becca stopped. 

Want to write more (happier things) tonight, but I'm wiped and keep falling asleep.  Ethan or I will update again soon...

P.S. Again, a HUGE thanks to all of you blood and/or platelet donors out there!  You are saving lives every day... I know I appreciate you!

TK  

6.07.2012

Golf Outing

Wow, what a difference a day or so makes! Becca is feeling great and well over her Dex rage. She is pretty vocal about "I want to get the heck out of here." Other than getting a bit stir crazed, she is doing quite well. We are so glad that ugly episode is over. On Sunday, June 24th, there will be a golf outing in Becca's honor at Shaker Run Golf Club. The entry fee is $75, which includes 18-holes with a cart, lunch and dinner at Shaker Run. Lunch is served at noon with a shotgun start at 1:00 pm. Dinner will be served at about 6:00pm; those interested in attending the dinner but not golfing can do so for $25. For dinner and golf reservations call 513.727.0007. I will be playing, and hopefully Trisha will be able to be there as well. There will be several games on the course to take part in, typical of an outing of this nature. I believe that the event is also kid friendly with some activities available. Thanks to the Lambert Family and Shaker Run Golf Club for putting this on for Becca. I hope to see many of you there, and you are able to beat the pro. EK

6.04.2012

Roid Rage

Wow! before before I go into the nasty details of what Becca has been going through the past couple of days, I should tell you why it occured...(visible swirling indicating a flashback)...after her first couple of doses of heavy Ara-C, she was very ill with Ara-C Syndrome but began her first chemo treatments with some underlying respiratory issues and likely a bit of a bug in general. That combination of illness and huge doses of chemo is what put us into the ICU...(swirls again back to the present)... in an effort to prevent Ara-C Syndrome again, the docs put her on pretty large doses of dexamethasone a.k.a "dex." It is widely known by cancer families that dex is demon spawn that also has some clinical benefits which are quickly forgotten in the maelstrom of mood altering side effects that follow its use in high doses.

Trisha spent Friday and Saturday with her and was at her wits end with the minuscule attention span and arguing and general displeasure with everything around her. I was at home with Lily and felt helpless, wanting to rush in and save the day. Sunday, I went to relieve Trisha and began my stay with our normally sweet child. Trisha left a bit before noon. Following mommy leaving, I expected some pretty rough emotional patches, but nothing prepared me for the rage and psychotic breakdown of our baby. She lost all control and was screaming, clawing, biting, hitting, threatening murder, babbling, unhooking her lines, and trying to climb out of bed to chase me and nursing staff with promises of violence. She was given a dose of Ativan that just made her feel more out of her mind. An hour later she was given a larger dose of Ativan but still fought it as best she could.

Over the weekend they had begun to give a modest dose of Zyprexa (anti-psychotic). I was able to manipulate her into to drinking a cup of water laced with an additional dose of Zyprexa, but that was not going to cut it quickly enough, and so she was given a touch of Fentanyl. She finally fell asleep, ending a seamless 3 hour rage. I am pretty certain that something like this would have happened even if Trisha had not left; Becca would have discovered a different reason to get agitated. Over night she was as sweet as butterd honey and only needed a small dose of Ativan to help with some gut pain and slight agitation. They have cut off her dex and are hopeful that she will not become symptomatic. The dex should be out of her system tonight or tomorrow morning and she should return to her normal happy sassy self. EK

6.01.2012

Back in the box

Well we knew that we were going back but that knowledge did not make it much easier.  We returned to the hospital this morning and jumped right back into the fire.  Becca began her day in the O.R. with a lumbar puncture with cytarabine and will be getting more chemo later today.  This round, her chemo is over 8 days as opposed to the previous 10 day cycle but we will be in for about 4 weeks as she recovers.  Rarely have we seen the expected admission shorter than anticipated but certainly have seen it extended.  Becca is feeling great and we are not in contact isolation currently which means that we are able to go the playroom and wander around more than our last stay.

One thing that I took for granted from the start of this is that we would find a match.  A couple of weeks ago I was told that we did indeed find several.  This is without a doubt great news, and although I am hugely grateful I was not all that surprised based on what we told by the BMT folks in the beginning.  All good right?...well I had neglected to tell Trisha because I unconsciously assumed that she had the same feeling about the likelihood of finding a 10/10 match with the KIR mismatch.  So Trisha was kind enough to take some time out of her morning to punch me in the gut a few times between repetitions of, "I can't believe you didn't tell me."  This was all done with love and humor...I think.

One new thing for us here at the hospital is our Hospitalist.  This role appears to be mostly focused on taking some of the duties from the attendings and fellows.  If I were Ambrose Bierce I would describe this position as a doctor that is most noteworthy as an additional line on a itemized bill.  No matter, it is really just monopoly money anyway.  We received a statement last week that covered a 5-day segment of our stay with a bottom number of  $195,000  I told them to have it sent to 1600 Pennsylvania Ave. EK

On the way to our "last supper" as a family at home