Monday, 30 December 2013

Update on Mary: Change Time

We hope that you all had a wonderful Christmas! We really enjoyed our time together celebrating the birth of our savior and, of course, eatings tons of food and opening a huge pile of presents. Mom was blessed to have her break over Christmas, and that was great. She has been feeling worse lately, both having more pain and dealing with bouts of nausea, so she has decided that it's time to begin the next step of her treatment.

Tomorrow Mom will begin a new chemotherapy drug, which will be added to the drug she is currently taking. Since she has been struggling with her white counts, she will have to go in for shots for three days following the chemo, and she is not looking forward to that. Please pray that she will have minimal side effects (this drug is typically very well tolerated, but you never know), and that this new treatment will be effective in holding back the cancer's progress.

Also, while you are praying, would you mind including Nicolas? His bone marrow is probably generating new red blood cells by now, but there is a chance that it might not be yet. Please pray that it is and that his iron levels remain high enough to avoid another trip to the ER and another transfusion.

Thank you all so much for your prayers! We really appreciate them.

Thursday, 26 December 2013

Merry California Christmas

Tuesday, 24 December 2013

Sixth Christmas


Friday, 20 December 2013

Tennis, etc.








Thursday, 19 December 2013

Good Blood (and some cute pictures)

On Monday Nic, Kenny, and I spent the morning in the hospital for Nic's first blood transfusion. It was a little scary moving forward with it, since it was his first, but I have been amazed at how much he improved since getting that new blood. The process wasn't any worse than a blood draw or IV, it just took much much longer. The nurses in the peds specialty unit took great care of all of us, and as usual the Ronald McDonald room volunteers made our day a little easier and a lot more fun. We are very hopeful that this blood will be enough for Nic, as his body should have enough time to recover from the parvovirus before the effects of the new blood wear off, however there is an outside chance that he will need another transfusion if his marrow is slow to make those new cells he needs. For now we are grateful that he has perked up so much and that we were able to travel to be with our families for Christmas.

Before we left we had a chance to celebrate Christmas and have the kids open their gifts from us. The pictures of Tommy opening up the Nerf gun that he has been longing (and begging) for are so priceless that we had to post them. The other kids enjoyed their presents too, but Tommy was over the moon with happiness.





And here is a perked-up Nicolas showing off his new Spiderman baseball set.

Sunday, 15 December 2013

And we're home, for now.

Yesterday morning's post was based on information from the infectious disease doctor, who came into Nic's room, told me his blood looked much improved, that he wasn't neutropenic anymore and that he was therefore taking Nic off antibiotics and clearing us to go home. About four hours later our hematologist came in, told us Nic's blood looked much worse, and we needed to talk transfusion, and then we could go home because there wasn't anything more they could do at the hospital and given the number of kids with nasty illnesses roaming the halls it would be safest to get Nic home.

I was confused, to say the least.

Apparently, it is all about perspective. Nic's white counts and absolute neutrophil count were up, and while his hemoglobin was down to 7.5 (the lowest it has ever been), to a doctor unfamiliar with Nic's usual numbers his blood probably did look pretty good. After all, many people with sickle cell have a baseline/normal hemoglobin of 7.5. To our hemqtologist, the numbers looked poor, especially because his retic was zero, which means his marrow is not producing any new blood cells now because it has been shut down by parvovirus.

Without getting into the entire long debate, we were able to leave, but he has to go back as an outpatient on Monday, and he is scheduled for a transfusion. If his hemoglobin and retic have miraculously improved by Monday than he avoids the transfusion. If not, well they have a bag of true universal donor blood (negative for any antibodies, even the ones you don't usually hear about) that literally has his name on it.

We are so happy to be home and have our family together, and our furnace has been fixed so we are toasty warm.

Please continue to pray for Nic's blood to improve, for his heart (as it is getting quite a workout due to his anemia and has a very loud murmur), that he would avoid a secondary infection since his immune system is still not great, and that he would recover mentally/emotionally from his stay. He was a bit of a grump yesterday afternoon.

Thank you all for your support through this! It has been quite a wild week, and we are glad we didn't have to shoulder the weight of this alone.

Saturday, 14 December 2013

Reverse!

We have seen an incredible turnaround since my last post. Nic's fever broke and has stayed down, his bacterial cultures are negative, and he is no longer neutropenic (in danger of getting sick from the bacteria in his body already). His blood has a long long way to go to reach his normal, but it is moving in the right direction. Praise God and thank you for all of your prayers! Please continue to pray that his blood counts would improve and that his body would effectively fight off any germs it encounters.

I was so excited to call Jeff and tell him the news that we might be able to come home today or tomorrow, and when I told him he started laughing and let me know that our furnace is broken, it is fifty four degrees and falling in our house, and that he was waiting for the repairman to call back. When it rains it pours. If you wouldn't mind, would you pray for this situation? Nic's immune system is still low, and so he really needs a home to come back to, not a germy hotel. If our pipes burst we are going to be in a world of trouble. Just what we needed for Christmas.

Friday, 13 December 2013

Confirmation

Nic has parvovirus, aka, fifth disease. It has knocked out his body's ability to make new blood cells, which is why his blood counts continue to be so poor. This will reverse as his body fights off the virus. Unfortunately his immune system is functioning poorly right now, because the immune system needs the blood cells Nic's body isn't making to fight off the virus and anything else that may be coming at him. His doctors (and there are many) are now concerned that his ongoing high fever is due to the beginning of a secondary bacterial infection. They started blood cultures this morning and will continue treating him with antibiotics.

Nic is tired and worn out. His morning blood draws are making him mad, really, really mad. It is so hard to watch.

Please keep those prayers coming. We had travel plans this weekend that we will not be able to make. Please pray the the airline would be easy to work with, that they will allow us to change all of our tickets, that they wouldn't charge us to do so (in situations like this they usually don't), and that we could get seats on a new flight when Nic is well. Thank you all for your prayers!

Thursday, 12 December 2013

Day Three

I am officially losing all track of time and day and weather and am waiting for cabin fever to set in. Nic announced last night after a particularly aggressive nose swab that he was DONE. He instructed me too tell everyone he did not want any more ouchies. If only...

Nic's health remains about the same, but since he is stable he is off PICU status which is making it much easier for him to move around a little and play a bit. The play therapist brought him a bin of toy trains, many of which were engines he had never seen before, so he had a great time with those. We also got to play memory and a Mickey chutes and ladders game and read a lot of Curious George. It has been wonderful to see him a bit more perky.

His hemoglobin was up a bit today, so he avoided transfusion. However his overall blood numbers were down, his immune function is very low, and the infectious disease doctor things things will likely get worse before they get better. His fever is unrelenting.

Please pray for peace for Nic. He is getting rather crabby (understandably). Also, please pray for Tommy and Kenny, they have been in good hands, but it is hard on them too. Thank you all for your prayers and messages. We are so blessed to be loved and supported by such a wonderful community both near and far.

How are you?

Practically the first words out the mouths of every doctor who has walked through Nic's door today (and there have been many).

How are you?

The question that's been repeated by every caller, visitor, and friend who has emailed or messaged me to check in on Nic.

I can't tell you how many times today I've answered that question with, "Well we're in a hospital," because, frankly, I'm not entirely sure how I am.

In the past thirty-six hours I've gone from thinking Nic was well on his way to a full recovery from a little cold, to watching him hooked up to countless monitors and machines that are tracking his overworked heart and discussing plans for a transfusion with his hematologist. His body is not working right now. It isn't producing blood, it isn't generating life, and as I see him slowly drifting and fading I know that it is only a matter of time until he endures more pain and more pokes and more discomfort so that his fluids and cells and levels and rates can all be restored. But I feel comforted that his life can be restored because, well, we're in a hospital.

And we aren't in just any hospital, we are in a very nice hospital. Our hemotalogist works for a top research institution, we have an excellent hospitalist, an infectious disease doctor, and an ICU physician following Nic. They have all visited, they have poked and prodded, they have ordered many tests and they have collaborated and come to a conclusion and drawn up a plan.

While this all may be run of the mill for sickle cell disease, and standard procedure for treating parvovirus and so on and so forth, that is only true because we are in a hospital, in the developed world, and in a country with fantastic health care.

This is all Nic's reality now, praise God, but it wasn't the reality he was born into. Nic was born in one of the poorest countries on earth. His early access to medical care was so limited that no one even knew he had sickle cell disease. Even if his disease had been discovered, and it likely would not have, he would need money for treatment and someone with the ability to get him there. If he made it to a hospital or clinic, the care he would receive falls so drastically short of our standards (due to lack of equipment and medicine and electricity) that it's difficult for me to even think about the vast disparity, because I know there are other Nics, and I know that this is the reason that so many children living in developing countries die of sickle cell disease before their fifth birthday. And Nic might have been one of that number. He so easily could have been one of that number.

So, how am I?

I'm in a hospital.

On the one hand, I'd rather not be here. I'd rather be lighting our advent candle, and eating all those Christmas cookies I just made, and snuggling my kids in front of a fire, and packing for a trip to see my family.

On the other hand, I'd rather be here than anywhere else.

Wednesday, 11 December 2013

Nic update

This morning we got the results from most of yesterday's tests, including his late night, wake-up-the-pediatric-cardiologist-to-read-it-echocardigram. It never feels good when they don't think they can wait until morning. Everything looks OK. His heart has a loud murmur and is enlarged, probably because Nic's anemia is severe compared to his norm. For an SS patient it still isn't terrible(7.7), but it is a steep enough drop from his typical 10.6-11 that his heart is really working overtime and therefore having trouble. This is reversible, so once he stabilizes his heart should return to normal, although long term damage can occur if this happens too often. They are watching him very closely to monitor how his heart is withstanding all the extra pressure. He is hooked up to more monitors than usual and is completely bed-bound.

The suspicion is that he has parvovirus aka Fifth's disease and that this is causing his body to stop making new blood cells. Thus since Saturday his HB has dropped from a low ten(his typical sick count), down to 9.2 yesterday and 7.7 today. In addition his retic is well below one and dropping, so while we are waiting on the blood test to confirm parvovirus, it seems the most likely culprit at this point. This means that Nic will need a blood transfusion, so they are doing his secondary typing right now and hopefully his HB will stay above six long enough for them to get that done (please pray), because when out drops he will require blood and they will have to do a poorly matched emergency transfusion if the information isn't available.

Nic is in mostly good spirits and has watched Monsters University at least five times. He isn't allowed to go to the play room, so there isn't much for him to do. We've read a ton of books and are hoping for a visit from the therapy dog this afternoon, because he really enjoyed yesterday's visit.

While I would much rather be at home, we have a great hospital and they and the staff of the Ronald McDonald family room are taking great care of us.

Please continue to pray for Nic's recovery and treatment. Also, pray for Kenny and Tommy as this really throws them off as well. The little boys and I had planned to travel to CA very soon.. Please pray that Nic would either recover in time for us to make our flight or that we would be able to find alternate arrangements easily.

Tuesday, 10 December 2013

Nic

I am writing this in Nic's hospital room. It has been a long week for poor Nic.He has been under the weather since Saturday evening and has ended up here. They aren't quite sure what is going on, but something is wrong with his heart, and since his hemoglobin isn't particularly low they are trying to figure out why. It is after ten and he still has more tests to sit through before he can sleep. We've been here since two, so we are both wiped out. He is on PICU status right now, which never makes me feel comfortable...but then for as many times as I have heard the phrase "heart failure" today I was probably going to be unsettled either way. Please pray for answers and a good course of treatment. We area so thankful for the many excellent doctors who are consulting about his care.

Sunday, 1 December 2013

Star of the Week

Usually I check Tommy's bag very carefully every day after school. He has a special folder that always has communications from the school (there are so many flyers) and his completed work. The only days that I sometimes forget are Fridays, especially when we have something else going on directly after school, and we have been inundated with birthday parties of late. So, imagine my surprise when Sunday at 3pm Tommy announces, "Hey Mom and Dad, I'm the star of the week."

Ugh. Mad scramble to create a poster. Thank goodness for Walgreen's one hour photo.

We set Tommy to work coloring and illustrating the "all about me tee" he had to have for Monday, and it turned out pretty well considering the last minute nature of his efforts.

Here he is on Monday, eating his favorite breakfast on the "Special Day" plate.


And with his poster. He chose his favorite pictures of himself and of our family to share with his class.


He also got to bring in a toy from home one day to share, and he chose to bring his green monkey and his baseball mitt, he brought the book The Pirate Cruncher to for the day he got to choose what they read, and he generally enjoyed being the star...not that this comes as a surprise.