Well, I'll make this blog more concise and less garbled than the last! Even I lost myself reading the lost one back recently! Guess it just illustrates my frustrations, the complexity of the various systems we deal with and with it the many people!
Well last week Harry had platelets on Tuesday, the community nurse came early on the Monday to take his bloods, so we avoided clinic that day after all! In fact the nurse who took Harry's bloods on Monday is our new lead nurse, who seems lovely, empathetic, understanding and most of all sensible! Yay! Just wish she worked more than 2 days a week, but feel got some stuff straightened out! At last!
So Harry had platelets Tuesday, then went to school for the last hour! He then did a 3/4 day on the Wednesday, so we thought lets go for the whole day on Thursday! Well it's a plan, so inevitable not to be! Harry has had a terrible cold and he had catarrh on his stomach as well as his feed. I gave him his medicines, but he was complaining of tummy ache and feeling sick, when I gave him his anti sickness, which I had started to wean him off, he was sick as soon as it hit his stomach, thus immediate vomiting and yep, his tube comes out! daddy's day off and you guessed it, daddy's turn to take Harry to LGI to have it refitted. Who'd have thought snotty noses have their bonuses, well cos he needed isolating and I don't think there was anywhere for him to go, his tube was changed immediately! Thus getting home for lunch time and with a charismatic Harry back on form, school it was to be for the afternoon!
So our achievement last week was that Harry did actually attend school for some part of every day!
We saw my sister, her husband and baby Olivia at the weekend, as well as having a pre christmas family gathering on the Saturday. The boys love their only cousin!
I wasn't sure how the boys wold be at the family meal, but they actually managed very well! A bag of toys to entertain them helped too!
So onto this week, Harry's bloods were taken at home on Monday, before school. the results showed that Harry's red blood (HB) was fine, but his platelets were 25, so having had a discussion with the nurse in clinic it seemed perfect to join a visit to LGI on Thursday with a visit to the clinic to test Harry's bloods again, but really assuming a platelet transfusion will be needed. Since May harry's platelet scores have not maintained themselves, a typical side effect of all the treatment Harry has had and as a result 9 days has been the greatest length between transfusions, so very fare to expect Thursday to be another transfusion day!
We write off Thursday in preparation for a day at LGI and tell school that Harry won't be in.
We arrive in clinic prior to Harry having his dentist appointment and his bloods are tested via pricking his thumb and squeezing a thimble of blood out. The results are ready when Harry returns from the dentist, whereby he had a tooth sealed. He was brilliant and very entertaining in the dentist's chair! Anyway, the blood results said that his platelets were 28! It also said that his neutrophils which were 0.85 on Monday had jumped to 3.4! Well I read them in disbelief and really believe that they are another child's results! We go from knowing Harry has a cold and with his neutrophils dropping again, we fear an infection could be on the horizon, to seeing figures, which are great for Harry! 28 is still low for a platelet count, but transfusion levels are below 10! I expected them to be about 11 in which case they would have given him a transfusion.
So completely flawed regarding the results it's the other way round to 2 weeks ago. Harry had woken in the night and seemed to be symptomatic of needing platelets, but the scores said not. 2 weeks ago, I had been sure he'd not need a red blood transfusion, but the scores said yes! So I don't know where I am any more! However, this time the scores are a very good sign of progress! I discuss the results with the nurse and since Harry's port did need to be accessed for a liver functioning test, they agree to retest his bloods! This is just to affirm to me that there had been no mix up! We await some medicines from pharmacy, but even these are made up and dispensed promptly! Not wishing to spend the day in LGI, I just had to replan our day, but in a good way! Home by 2! Harry has lunch and the decision made to skip the last hour of school in exchange for making buns for the school Christmas fair and making Christmas cards for friends. With Callum in nursery, it was actually lovely to spend time just with Harry!
At 5 pm, I contact clinic to get the results of the second blood test, the scores are slightly lower, but still indicating that no transfusions are currently needed! Progress, Harry's platelets are at last holding up for longer, next weeks treatment will shatter them again, but hope it gives for the end of treatment, that they will recover albeit slowly!
So we hope everything holds out till Monday, when Harry returns for his 3rd immunotherapy treatment over 5 days.