Archive for February 2011

February 28th, 2011   18 comments

Tonight is a hard post to write.  This marks the end of our little vacation in our own semi-regular lives.  Tomorrow we say “Good-bye” to our dear little Molly for the better part of two months.  Tomorrow we leave the comfort of our Columbus house to head to the protection of the 4th floor at AFCH.

We know Molly will be in good hands.  The very best.  And we cannot thank our parents enough for taking her in while Amy and I concentrate on making Charlotte whole again.  We love you Moms and Dads.  We couldn’t have made it this far without your love and support.

We know that we have done the best we could have with Charlotte over the last 5 weeks.  We have tried to keep her healthy.  We have tried to keep her happy.  She still doesn’t know anything is wrong with her.  She still doesn’t know that this isn’t how two year olds grow up.  For her, a part hospital/part home life has been the norm for 6 months.  And we are so proud of her for being so happy no matter where she happens to be.  She really gives us hope that we are doing the right thing.

 

We hope to arrive tomorrow by noon.  We will find our room in the little secluded transplant hallway and move our stuff in.  Charlotte won’t start chemo until Wed so hopefully tomorrow will just be a good chance for her to get reunited with the feel of the hospital room without all the bustle that is likely to follow in the next couple of months.  Starting tomorrow, we will all be under strict transplant rules.  Amy and I won’t be able to use the bathroom or shower in Charlotte’s room at all.  Neither of us will be able to eat anything in her room.  Charlotte will have to stay in her room for the large majority of the day.  She will be allowed to leave her room for one hour periods only three times a day.  Even when she is out of her room,  she will need to stay within the transplant hallway which is only about 50 feet long.  The play room and anything in it is off limits.  She used to spend hours playing with the little pieces of board games in the family room, but she won’t be able to now.  And once she becomes neutropenic, she won’t be allowed to leave her room until her ANC is above 500 for two consecutive days.  That could take weeks.  She won’t be allowed any food that is not prepared by the hospital kitchen or straight out of the single serve box/can.  This means she won’t have her beloved chicken wings for a long time.  Or her favorite Chinese chicken or McDonalds hamburger and fries.  Any toys we bring to the hospital must be either brand new or thoroughly washed and cleaned.  Amy spent a good couple of hours picking out CJ’s favorite toys and cleaning them today.

It is going to be a very different and difficult two months.  But we know Charlotte will be up to the challenge.  And Amy and I need to keep her comforted when she needs it, and entertained when she doesn’t.  We also need to keep each other strong and thinking positive.  She has done great.  She is doing great.  The odds are in her favor.  This will be her cure.

Please keep your prayers coming for Charlotte and her upcoming journey as well as for the continued recovery of Alexis.  She has had a long transplant.  She has fought hard and neither she nor her parents have ever given up.  Her family is an inspiration to Amy and me as we take our first steps into transplant.

Please also pray for Amy’s cousin, Alison.  She is continuing the wicked rounds of chemo of her own.  She needs continued prayers and positive vibes this week as she undergoes testing to confirm the chemo is doing its job of ridding her body of cancer.  She is one strong woman and we are so proud of her!

Posted February 28, 2011 by L. Elske in Uncategorized

February 25th, 2011   11 comments

Charlotte has still been doing great.  She has developed some little bumps on her shoulder and wrist.  They happen to be located right where we tape up her arm when she has a bath so it is most likely a reaction to the tape or adhesive remove we use.  But to be safe, Amy emailed the doctors and they aren’t concerned.  It hasn’t spread and she has not had other symptoms like a fever that would lead them to think virus.

Amy and I are trying to get our packing list together for the admission on Tuesday.  We really don’t want to leave.  We have had 5 awesome weeks at home with our girls.  Life has felt about as close to normal as we could get except for the fact that we have had another pretty huge step waiting all along.  We are also not looking forward to saying goodbye to Molly.  We know she will be in the best of hands as Grandma E and W can’t wait to watch her.  But it reminds us of how serious this step is and that we need to concentrate on Charlotte’s needs for the next couple of months.

Posted February 25, 2011 by L. Elske in Uncategorized

February 23rd, 2011   6 comments

So far so good.  Charlotte is still doing well at home.  She hasn’t showed any more signs of being sick so we are pretty happy about that right now.  Molly has developed an eye infection likely caused by a plugged tear duct and Mommy was right on it, contacting the doctor, getting some antibiotics and that has already gotten better.  And she has told Charlotte not to get too close to her head or touch her eye area so we are all being careful.  But Charlotte is having fun at home.  Nothing else has changed with her.  She is still active and feisty.  She is driving Mommy crazy being cooped up in the house all day.  She fails to listen to Mommy and Daddy’s requests some of the time, just like any other two year old would do.  She throws her food when she is done eating and sometimes when she is not done with it, just like any other two year old would do.  She also does really cute stuff, like saying “I love you too Mommy”, just like any two year would do.

Amy and I are just trying our best to deal with the huge range of emotions that we have.  We love the fact that she seems better.  We hate the fact that, without any further treatment, she is very likely to not stay that way.  We love the fact that a bone marrow transplant could very well be her final treatment and cure.  But we hate that we need to make her so sick in the process and are very worried about the large risks associated with it.  And we love the fact that her transplant admission date is finally coming up, less than a week now, but hate that her transplant admission date is less than a week now…

So Amy and I argue a lot.  We cry a lot.  We spend a lot of time trying to support each other and remind each other that Charlotte needs us to be strong.  Her attitude hasn’t let us down and we need to be there for her.  We try to only concentrate on the positive aspects of the transplant, but there are too many side effects and risks to not worry about bad things happening.  It’s going to be a tough yet rewarding journey.

Posted February 23, 2011 by L. Elske in Uncategorized

February 21st, 2011   8 comments

Sorry for the late post.

Things are still going well at home.  Amy and I have both noticed either an extreme reduction in our cold symptoms or a complete absence of them.  We know we are on the mend.  So far Charlotte has stayed healthy through it all as well!  She hasn’t had much of a cough in the morning since Sunday-and even then, that was all she was showing.  Any sign of cold or discomfort was early in the morning and the rest of the day nothing would bother her.  She still has more energy than either Amy or I and she is using it well by keeping us moving around the house.  She likes to chase us and have us chase her.  She is still eating pretty good and over the past week Amy has gotten her to start drinking milk again.  She used to just love her milk and drank several cups a day.  During the last round of chemo she started drinking water and really didn’t want her milk too much.  So this is another good sign that she is feeling like a normal kid!

We are getting very nervous as the transplant is now a week away.  We both wish we could fast forward two or three months and not have to live through what is coming up.  But we know it is an important step in CJ’s fight against this deadly disease and we are willing to take as many of those steps as we can.

Posted February 22, 2011 by L. Elske in Uncategorized

February 19th, 2011   1 comment

Starting yesterday morning, Charlotte started showing signs of having caught our cold.  She wakes up and coughs a few times in the first few hours during the day.  She sounds pretty congested but is soon done with the coughs and is on with her day.  She has not had a fever, and she doesn’t sneeze and her nose is not runny.  Otherwise she is fine in every other way.  She continues to have tons of energy and doesn’t stop playing and running around.

Amy and I are still feeling the effects of the cold.  We are still coughing a little bit throughout the day and we have drippy noses (you wanted to know that didn’t you?).  So we are still trying to wear masks around the house whenever possible.

Amy emailed Dr Diamond as Dr DeSantes-the head of the transplant team-is out of the office for a few days.  We mainly wanted to know if there is anything we can do to prevent Charlotte from getting this and wonder how it will affect her transplant. Dr Diamond just said it is very likely viral, and there is nothing that can be done to treat it besides fluid and rest.  She does think that it shouldn’t be bad for transplant unless she is experiencing frequent symptoms a week from now.  If that is the case then Dr DeSantes may order a viral swab and delay the transplant.  We are praying this passes very quickly and she is not ill for long.  I don’t think we can mentally process another delay.  We also want her to just stay healthy and strong before she gets admitted.

G&G Wags came over today to watch Charlotte while Amy and I went shopping and took Molly to have her 3 month pictures done.  They brought Broadway over and we were so happy to see him!  They said they had a great time with Charlotte, and I know she loved spending time with them.

Posted February 19, 2011 by L. Elske in Uncategorized

February 17th, 2011   6 comments

The long break between chemo rounds has allowed CJ’s hair to start growing back (see picture on the right).  She will certainly lose it again during transplant, but it is cute to see her with a little peach fuzz.  She did not have her first haircut before she was diagnosed and now Amy thinks that she and Molly might both have their first haircuts at the same time in the future.

She has been great every day this week.  She is happy, healthy, energetic and full of life.  Again, this makes us pretty sad because we know what is coming up in another week.  But her laugh and smiles make it easy to come back to the present and make us thankful for what we have now.

Unfortunately Amy and I both have been experiencing cold symptoms over the last couple of days.  We both have sore throats and some nasal congestion.  We are trying to be careful around CJ, even though her numbers are probably high enough to handle any lesser infections.  But we are concerned because transplant is so close now and we need to keep her healthy.  Amy is even wearing a mask around the house all day!  She emailed Dr Diamond and she didn’t sound too concerned about it-probably because of her higher numbers.  We also wonder if this is what caused her fever on Sunday so maybe she has already been exposed to it.

She still loves her bath times though it gets to be quite a hassle to wrap and protect her PICC line.  We warn her that she needs to keep her arm dry and she is so good playing and having fun with only her right arm.  It looks awkward but she really has gotten used to it, as she has done with so many things over the last 6 months.  We are so proud of her.  She has impressed us since the first time we brought her in.  We really love the hell out of that little kid!

 

 

Posted February 17, 2011 by L. Elske in Uncategorized

February 15th, 2011   3 comments

Charlotte again was fever-free today.  She played all day happily.  The four of us took a walk this morning around the block and Charlotte loved it.  The wind was a little cold, but she still had a good time.

Grandma E came over while Charlotte napped so Amy and I could go to the bone marrow transplant consent meetings this afternoon.  We heard an awful lot of information we already knew, but also some stuff we didn’t.  We now know that for a period of time after the transplant, they would like us to have Charlotte in an “isolation” state.  No crowds, no sick children, no busy stores or other places where she might catch something.  We also found out that during that time, she won’t be allowed any of her favorite berries.  Strawberries, blueberries and raspberries and grapes are her very favorite, and since they cannot be scrubbed clean they pose a greater threat to her getting sick from them.  She won’t be able to go swimming or play in sand or dirt or jump into piles of leaves for this time.  She might have to wear a mask while outside if it is windy or if grass is being cut.  She will still need to have immuno-suppressant medications this whole time.  Once the various tests show that her new immune system is developing nicely and her numbers continue to stay at a healthy level, the “isolation” state could end.  This period usually lasts until 6-12 months after the transplant.

We asked the doctor why Charlotte was asked to have a bone marrow transplant versus a peripheral blood stem cell transplant or use stem cells from cord blood.  He said that with AML,  the survival rate for bone marrow transplants vs peripheral blood stem cell transplants is higher.  He also mentioned that using a cord blood donor is a one time use thing.  If Charlotte does relapse, we might have other treatment options from the original donor.  We could use a leukocyte transfusion from the donor and that could help fight the leukemia.  The Dr knows of at least one person where this process saved his life.  Also we could use peripheral stem cells from the original donor to try another “mini” transplant if the cancer comes back.  If we used cord blood, there would be no options for getting anything further from the original donor.

All things considered, it is still a very risky procedure.  There is still a 20-30% chance that she might not even make it through the transplant because of infections, engraftment failure, or serious side effects.  There is still a 20% chance that the leukemia could come back, even after a successful transplant.  None of these things make us feel good.  None of these numbers give us any peace that we are making the right decision, especially when she is very healthy and very happy and very leukemia free at this point in her life.  It kills both of us inside to think that once she gets nice and healthy and used to life back at home,  we need to subject her to this.  But the rarity of her AML subtype, and more importantly-the complex cytogenetics of her leukemia cells, lead all of the doctors involved to believe that she is at a huge risk of relapse with just chemotherapy.

But there is good news in this whole thing.  He said that all of her pre-transplant evaluations looked good.  They gave him no reason to think that she would be in any more danger of any of the more rare, more serious side effects.  The donor is a perfect HLA-type match with a “better” classification of NK cells.  The donor is a woman, has never been pregnant, and is the same blood type.  All of these are usually indications of a slightly lesser chance of the more serious acute graft vs host disease.  Charlotte is in first remission and has not had years of chemo doing damage to her organs.  She is also still growing.  And all the new tissue her body produces as she gets bigger and her organs mature, has not been subjected to chemotherapy.  So hopefully, her body will actually heal itself as she grows.  She has already lived the transplant life so to speak with her first four rounds.  She has had no infections while her numbers were down, and she has rebounded nicely and stayed healthy between rounds.  She is also getting a good break at home now, keeping her numbers up and her body is rebuilding its strength.  Dr DeSantes still believes that she has a better chance of this being her cure than not.  I wish her survival odds were somewhere in the 99.99994% range, but we will take anything in her favor right now.

So we are trying to concentrate on the good points of the conversation and we hope we don’t have to worry about some of the bad ones.  We believe this is the right thing for her, and we have faith in the staff at AFCH.  We know the Lord has a plan for her and that is why He is allowing us to love her more and more every day.

Posted February 15, 2011 by L. Elske in Uncategorized